Each week, we showcase a picture of real life from the Medical Motherhood community. Submit one! If you’d like to participate, simply reply to this email. The intent is to show YOUR experience as a medical parent, not your child. What do you want people to know about the #medicalmom life?

Subscribers, it’s time to say goodbye to the podcast version of Medical Motherhood. I’ve recorded nearly 100 episodes and learned a great deal about audio production! I would like to focus more time on producing short videos — like TikToks and Reels — and don’t seem to be able to find the time to do it all. I regret not being able to provide this format to those who prefer it. But, I have applied for Substack’s new text-to-speech function and hope it will be available soon. As always, I’m available for feedback by simply replying to this email. I hope my new videos are a helpful way to consume this content and thank you for listening for the past two years!

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From PBS News Hour: “Lawsuit accuses Catholic schools in New Orleans of discriminating against students with disabilities”

It’s homecoming season, but one 16-year-old is missing the rite of passage this year.

The sophomore, who has cerebral palsy and uses a wheelchair, is home-schooled — and not by choice.

The teen’s family has sued two local Catholic schools over what it describes as discriminatory admissions practices against students with physical, emotional, or learning disabilities. Now, it has joined a class-action lawsuit that claims that the Archdiocese of New Orleans asks illegal questions about students’ disabilities on its schools’ application forms.

The lawsuit said this kind of practice has denied students with disabilities the opportunity to go to a Catholic school run by the archdiocese.

“We’re very angry at the Catholic Church. We have not been back to church since this happened,” said her mom, who asked that she and her family not be named to protect her daughter’s identity. “The fact that the Catholic schools did this to us and no one from the Church even stepped up to make a comment, tried to help us, or offer any kind of empathy and support — it’s very disheartening.”

[…]The lawsuit claims that by asking unlawful questions about disabilities and requesting medical information of prospective students before they are enrolled, New Orleans-area Catholic schools are violating the Louisiana Human Rights Act, which does not have a religious exemption, and the Louisiana Civil Rights Act for Persons With Disabilities, which explicitly prohibits asking such questions as a matter of admissions.

The suit also alleges “widespread segregation” of prospective students with disabilities in New Orleans-area Catholic schools, accusing the Archdiocese of New Orleans of directing parents of students with disabilities to apply to a small handful of schools for “exceptional learners,” in violation of both acts.

The lawsuit, originally filed in 2022, was put on hold for close to a year by a judge overseeing the archdiocese’s bankruptcy proceedings, which now includes 500 claims of child sex abuse by priests and other clergy. This year, another judge said the outcome of the bankruptcy process would have no bearing on the discrimination case and allowed the suit to move forward.

A trial date has not been set.

[…]Louisiana has one of the highest rates of private school enrollment in the nation, in part because of the local Catholic culture. More than 518,000 of the 1.2 million people in the New Orleans area identify as Catholic, according to the archdiocese. Twenty-five percent of New Orleans-area students attend private school, more than twice the national average, according to the Cowen Institute at Tulane University, which studies the city’s public education system.

[…]The archdiocese did not return requests for comment on its admissions or enrollment practices.

E.R. and her family will miss out on many high school activities because she’s being homeschooled, but they have learned a valuable lesson on the importance of making sure kids with disabilities do not face more scrutiny than kids without them.

“Not only did it bother me about what they were doing to my kid, but how many other kids were they doing that to? It’s been going on for years and years. Nobody did anything about it,” she said. “No matter how hard it is. If you don’t stand up for your child, nobody else will. That’s the bottom line. Standing up for your disabled child is not an easy thing, but you have to do it. You may lose things but you’re also going to gain things.”

• From The Washington Post (Letters to the Editor): “Empower parents of children with disabilities”

One step forward and two steps back describe what Gov. Glenn Youngkin (R-Va.) has in mind for intellectually disabled Virginians. He committed to getting services, as covered by the developmental disability Medicaid waiver, to the most at-risk individuals. This is a big relief for the folks trying to get a waiver.

In January, he implemented new policies attempting to ensure that our children don’t live with the people who care for them. Yes, parents of the intellectually disabled can be paid between $12 and $17 per hour to take care of their children. This is care that often includes hygiene, feeding and transportation. The income, under the difficulty-of-care exemption, is not taxable. Now, Mr. Youngkin has brought on managed care agencies to hire the people who care for our individuals. There isn’t enough money to care for our folks, but there is enough to pay agencies? Apparently, Mr. Youngkin is making sure I don’t milk the clock by helping my 23-year-old daughter manage her hygiene.

Mr. Youngkin, do away with intrusive policies such as having agency staff come into our homes and decide who is going to care for our children. You talk about empowering parents. Please extend that dignity to the parents of those with intellectual disabilities.

Ann Masch, Markham

• From The New York Times: “Claudia Goldin’s Nobel-Winning Research Shows ‘Why Women Won’”

Claudia Goldin, who won the Nobel Prize in economics on [Oct. 9], has documented the journey of American women from, in her words, holding jobs to pursuing careers — working not just to support themselves, but because work is a fundamental aspect of their identity and satisfaction.

[…]Yet, her research demonstrates, women still lag behind men in various ways — in their pay, their work force participation and the share who reach the top of professions.

That’s no fault of their own, her recent work has shown. It’s because of the way work is structured. American jobs disproportionately reward long hours. The most glaring gender gaps would diminish, she has argued, if employees had more control over where and when their work got done.

[…J]ust as women who were children in the 1940s underestimated their career potential, the current cohort of working-age women may have overestimated it.

Men’s and women’s careers and pay are basically the same when they start working, but they change when children arrive. Her research shows a small dip in the share of women working in their late 30s and early 40s. Mothers are less likely than before to quit after their first baby, but slightly more likely to temporarily do so later, after “they try as hard as they can” not to, she has said.

[…]Closing these remaining gender gaps would require flexibility in where and when work gets done, her research explains. She has said in the past that such a change would require a fundamental remaking of the American workplace, “taking the whole thing down.” But more recently, she has expressed hope that the pandemic may have made that reality more feasible for white-collar workers.

“I suppose I am ever optimistic that this will lead to some reasonably good things,” she said.

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

As the days get darker and the Halloween decorations come out, I wanted to republish this piece from last year. I still think about my conversation with haunted house creator and medical mama Chrissa Paradis and how cathartic a good scream and a giggle can be.

Here’s an excerpt. Follow the link below for the real deal:

[…] As parents to kids with medical emergencies — or the isolating subset of folks who have to deal with the real possibility of child death — visceral terror is not funny or theoretical: It’s some of the most real moments of our lives.

But perhaps, even for us, recreational fear can be healthy.

“As someone with a heavy amount of stored trauma — screaming, the act of literally screaming and releasing — you feel it free some of that,” says medical mama Paradis, producer and director of guest services at ScareGrounds PDX. “It really does have a restorative nature.”

Paradis says it has also been interesting to see how her staff have benefited from creating scares. She says about half of the cast members are LGBTQ and have experienced a lot of struggle in their lives — either coming to terms with themselves or with their family and friends’ reactions.

“They all find that creating the scares and taking that control is very healthy for them,” Paradis says. “So we kind of see it on both sides of how this environment provides some very primal healing.”[…]

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From The Texas Tribune: “Disability advocates argue against school vouchers in Texas Senate hearing”

Questions about how a voucher program would — or wouldn’t — serve children with disabilities took center stage at a Texas Senate education committee hearing Tuesday to discuss the main school voucher bill on the table during the Legislature’s latest special session.

Senate Bill 1, authored by Sen. Brandon Creighton, R-Conroe, would use taxpayer dollars to create education savings accounts, a voucher-like program that would give families access to $8,000 a year to pay for private school tuition and other educational expenses.

Voucher proponents argue that education savings accounts would allow students with disabilities access to specialized schools if public schools are not meeting their needs. Opponents, however, have pointed out that private schools, unlike public schools, are not required by law to provide special education services.

Some disability advocates have raised concerns about funneling public dollars into private schools when the state’s public school system, which serves most special needs students in Texas, remains underfunded. The number of students with disabilities in Texas has increased by 200,000 in the last five years, according to Steven Aleman, policy specialist at Disability Rights Texas.

“Our public school enrollment is growing. Our special education population is growing,” Aleman testified Tuesday. “We need to focus on supporting that system first and foremost, and [education savings accounts], quite frankly, are just a luxury we cannot afford.”

[…]Mandy Drogin, campaign director of an education initiative for the conservative think tank Texas Public Policy Foundation, argued the opposite. Drogin said she recently heard from a mother whose son with Asperger’s syndrome tried to take his life after repeated bullying in public school for his disability.

“I have heard thousands of parents begging for the opportunity to speak for their child and unchain them from a school that is not serving them,” Drogin said.

[The Senate bill’s author acknowledged the potential for discrimination in private school entry but said that should be worked out as a separate bill.

[…]“Although I understand your concerns that private schools have the ability to approve or deny based on that framework within that private school, moms and dads will be much smarter than us, as senators, in choosing the school that’s best for their child,” Creighton added.[…]

• From CalMatters: “Newsom’s veto lets California counties continue taking foster kids’ money”

Gov. Gavin Newsom has vetoed a bill preventing California counties from taking benefits, such as Social Security checks, from orphaned or disabled children in their custody, to pay for their foster care. 

The veto disappointed children’s advocates who have pushed for California to instead save those benefits for children to access when they’re adults. 

It also defies a nationwide trend. Increasingly, states led by Republicans and Democrats are stopping their child welfare agencies from the decades-old practice of essentially reimbursing themselves for providing foster care by cashing in certain children’s Social Security checks. 

Recently Arizona, New Mexico and Oregon have halted the practice, which came under increased scrutiny in 2021 after NPR and The Marshall Project published an investigation. This summer the federal government encouraged states to help children save their benefits instead, or find loved ones who could receive the payments on their behalf. 

[…]But in a veto letter issued Sunday, Newsom wrote that the measure to stop the practice, AB 1512, would have cost too much, in a year he and lawmakers have to close a more than $30 billion budget shortfall.

[…]“Governor Newsom let down thousands of hopeful, disabled and orphaned foster youth by vetoing AB 1512,” [Amy Harfeld, national policy director of the Children’s Advocacy Institute at the University of San Diego,] wrote. “Budget challenges or not, picking the pockets of California’s most vulnerable foster youth to fund their care is morally and fiscally indefensible.”

[…]The state contends child welfare agencies are spending the benefits appropriately — on the children’s care — just as if they were the children’s parents. 

[…State Assembly leader and bill author Isaac] Bryan, a former foster child, described the potential costs to the state as negligible. The entire state’s overall child welfare system costs nearly $5 billion a year. 

He said he will push for state money to be included in next year’s budget to halt the practice.[…]

• From Disability Scoop: “Feds Aim To Ease Shortage Of Special Educators”

[…]The U.S. Department of Education said it is awarding over $35 million to bolster the workforce of special education teachers and administrators, related services providers, those at early intervention programs and university faculty preparing these specialists.

A significant portion of the grants will be used for scholarships and other efforts to help students cover the cost of completing programs to prepare them for jobs serving children with disabilities, officials said.

[…]“Investing in the preparation and professional development of a strong, diverse workforce to serve children with disabilities is critical, not only to the well-being of individuals with disabilities, but to improve outcomes for all children,” said Glenna Wright-Gallo, assistant secretary for the Education Department’s Office of Special Education and Rehabilitative Services.

[…A]s of the start of this school year, data shows that 42 states and Washington, D.C. had a shortage of special educators.

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

On the second Sunday of every month, we feature Where is the Manual for This?!, an editorial cartoon about the medical mom life from Lenore Eklund.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Well+Good: “Parents of Kids With Disabilities Are in Mental Health Crisis”

[…]as study after study after study shows, high levels of stress and mental health strain are incredibly common among parents of kids who have disabilities.

Talk to any parent whose child has a disability, developmental condition or delay, neurodivergence, or other unique needs, and you will find that these things are true: They love their children with an inextinguishable fierceness, they're locked in a constant struggle to secure services for their children that would help them thrive, and they often feel isolated and forgotten.

All of this can negatively affect a parent’s mental health in both the short- and long-term. "Based on my clinical experience, isolation, anxiety, depression, and burnout are common mental health issues faced by parents of kids [with disabilities]," says Tasha Oswald, PhD, a psychologist and the founder and director of Open Doors Therapy, a neurodiversity-affirming counseling group. She points to the "greater responsibilities" of parents whose children will not usually meet milestones on typical timelines, if ever: "The kids will need more help from their parents along the way. In addition, there are fewer relevant parenting resources and [more] misinformation. So, your job is harder and you’re given fewer resources. And on top of it, you likely don’t have a community who gets it."

[…]To be clear, children are not the cause of parents' mental health challenges. Instead, the stress and burnout associated with parenting a child with disabilities comes as a result of navigating a complex and ever-evolving system of care. It's the expensive evaluations, the clinical visits, the endless mountains of paperwork, appointments to schedule and reschedule, phone calls to insurance companies, and—more often than you might imagine—legal battles to secure necessary services like medicine, equipment, and education. "There's a lot of trauma that goes into parenting kids like ours," says [mom Samantha] Kilgore. "But it's not from dealing with our children's challenges—it's from negotiating our child's right to exist in a world that is not set up for them. The fact that we even have to negotiate is enraging." 

Elizabeth Hughes, PhD, BCBA, the executive clinical director at the Institute for Applied Behavior Analysis in Orange, California, says that "trauma" is indeed the appropriate word to describe what parents of kids with disabilities must navigate bureaucratically and administratively.

[…]Similarly, Jessica Miller*, whose daughter was born with hearing loss, points to red tape around access to care as being problematic. "My mental health issues are not stemming from her disability," she says. "They're from how we're having to manage everything around it that the world presents to us, whether that's education systems or trying to get supportive therapies or even going to the doctor for more hearing tests."

[…]Well-meaning people often tell burned-out parents of kids with disabilities to prioritize self care, but a spa day or therapy session can't solve what's inherently a societal and systemic problem. "I've taken advantage of therapy and medication, and I've gone to different support groups," Miller says. "Those are all really important, but they're also very individualized solutions. So I try to also keep in mind: At the same time, what can I be doing on a structural level? What does that look like?" 

[…]Another important aspect of supporting parental mental health involves addressing the isolation so common among parents of disabled children. "Finding parent communities who deeply understand your situation can be validating and help you reconnect to your inner wisdom," Dr. Oswald says. "Talking with others who don’t get your parenting challenges and who give unsolicited advice or judge you can lead you to question your parenting and disconnect from your inner wisdom. Finding a supportive community can help you feel validated, appreciated, and inspired. Finding a community where you can express your worries and speak about those things that feel shameful can release you from the shame cycle."[…]

• From 10News (Tennessee): “TN expands system providing early intervention services for young children with disabilities”

Tennessee is expanding the services available for young children with disabilities to those who are an additional year old.

According to a release, the federal government approved the state to start offering eligible families the choice to continue receiving services from the Tennessee Early Intervention System until the start of the school year following their child's fifth birthday. It's the full age range allowed for early intervention services in Part C of the Individuals with Disabilities Education Act.

TEIS is voluntary and offers therapy, as well as other services, to infants and young children with developmental delays or disabilities. It's free to families and in the fiscal year 2023, it provided services to around 17,990 children.[…]

• From We Are Iowa: “Iowa promises services to kids with severe mental and behavioral needs after lawsuit cites failures”

Iowa’s health agency will take steps to develop home and community-based services for children with severe mental and behavioral needs as part of an initial agreement with civil rights groups that filed a class action lawsuit.

The lawsuit was filed in January on behalf of three children. It alleges that Iowa has for decades failed to meet its legal obligations to Medicaid-eligible children who should have access to individualized and coordinated care plans, in-home therapy and emergency services.

The complaint includes children who have been institutionalized for services that they were previously recommended to receive — and say they were entitled to receive, given the Medicaid Act — in their communities or homes.

"There was a desperate need to build a statewide children’s health system with an effective array of services," said Catherine Johnson, executive director of Disability Rights Iowa. “The complaint that we’ve filed alleges that these services are not available in anywhere in Iowa. They just don’t exist.”

[…]Johnson is optimistic about the work over the coming months, but she added that “time is of the essence” for these children and families.

“They would like to have these services — well, they would have liked them years ago,” she said. “There is certainly an urgency to providing these services.”

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

This week, I gave testimony to an Oregon legislative committee on the importance of figuring out Medicaid billing in schools. That was the subject of the investigation I co-reported with Emily Harris for NPR:

Schools could be getting millions more from Medicaid. Why aren't they?

You can watch and read all of the testimony on the House Interim Committee on Education’s website. Here’s a link to the video that starts when the topic does. My portion starts at minute 40:00 but please listen to all of the invited testimony on the topic.

If you prefer to read it, here’s what I wrote for my speech:

Chair Neron, Vice Chair Wright and members of the committee,

My name is Shasta Kearns Moore and I’m a freelance reporter and founder of MedicalMotherhood.com

Thank you for inviting me to speak with you today about the findings of an investigation into Medicaid money in schools that I co-reported recently for NPR.

More than 42 million American children — about half of all minors — are on Medicaid. The head of Medicaid and CHIP told us he envisions a world where all of those children can get the healthcare they need at school instead of having to miss days to travel to appointments or simply not get the care until it is more costly… or too late. To meet that goal, Medicaid has streamlined its rules and processes and created a technical assistance center to aid school districts in qualifying for funding. States simply need to do their part in updating their plans and modernizing their records systems.

Schools are already providing billions of dollars in health services to K12 students. Medicaid could be a way to finally fund the underfunded mandate of the Individuals with Disabilities Education Act that affirms the civil rights of all children to a public education.

The CDC estimates that about one in six children between the ages of 3 and 17 have a developmental disability. This is the most common type of disability in childhood. These are things like autism, cerebral palsy, and other neurological disorders. As recent research into neuro plasticity has shown, the proper approach to these disabilities is a brain-based, LEARNING approach. Education and health care actually have a lot they can learn from one another when it comes to childhood-onset disabilities and mental health conditions.

Integrating the nation’s school and healthcare systems would have massive benefits for the future generations of this country. You have the opportunity to break down the barriers between different buckets of money that taxpayers would like to see going to actually benefit the qualified child — rather than getting stuck in a maze of bureaucracy.

Other states have figured this out already. Chicago Public Schools estimates it will get about $50 million in reimbursements this year. Texas got $741 million from the federal government in 2021. Oregon has already tried a pilot project from SB 111 and with its state plan amendment approved this year, there’s a potential for the funding that students with IEPs and 504s have been promised.

Thank you for looking into how students can get the health services they need in the classrooms they are already in.

Friends, I’m considering ending the podcast’s run. If an audio version is something you really need or want, will you please let me know? Orr, if you have ideas for how the podcast can be improved, let’s hear them! Thanks!

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Oregon Capital Chronicle: “Did Oregon children eligible for Medicaid lose coverage?”

[…]In Oregon, 472,000 children qualify for Oregon Health Plan benefits, including about 8,400 who lack residency documents. Oregon has extended those benefits to undocumented immigrants through a state program – Healthier Oregon Program, or HOP, that uses federal and state funds.

[…]Health authority officials were due to meet with their federal counterparts this week to find out whether Oregon had indeed dumped children from Medicaid. 

State data shows that nearly 59,000 people have lost coverage since the state started the “redetermination” process, with people getting booted at the end of the month. A data dashboard that breaks those numbers down by demographics does not include information about those 19 or younger.

Heartquist said it was premature to say what the health authority would do if children had been wrongly disenrolled.

“We will not know this until we know if there is an affected population and how large it is,” she said in a statement. […]

• From the Big Issue (U.K.): “Councils wasting millions in taxpayer cash fighting families of disabled kids – and losing”

[…Regional governments in the United Kingdom] wasted £60 million in a year on unsuccessful court disputes with parents and carers seeking support for children and young people with special educational needs and disabilities.

The money spent in 2021-2022 would have funded 10,000 places in mainstream schools for children with additional needs.

[…]A massive 96% of cases were won by families.

These figures come just days after freedom of information requests from the Big Issue revealed that the government spends tens of millions each year fighting disabled and ill people who are appealing a benefits decision – only to have the majority of those overturned in favour of the claimant.

Even those who believe benefits are over-generous have to stop and think why taxpayers’ money is spent fighting losing battles.

It is both immoral and fiscally irresponsible to expect parents who have often given up work to support their disabled children and who might be providing 24-hour waking care, to go up against council-employed barristers to make their case.

[…]England’s most senior social worker, Dame Christine Lenehan, said this week: “If you had to design a [special education] system from scratch you would have to be on mind-altering drugs to come up with what we have now.” It can take years for a child’s diagnosis, once diagnosed parents are frequently left with a leaflet explaining the condition but no suggestion of where to find help. Traumatised parents are suddenly on a completely different path than the one they imagined.

[…]This is where parents deploy the language of the battlefield to describe their scrap for services. Everything is a fight. Parents already worn down by caring are expected to plead for everything that most non-disabled families take for granted – a decent school and teaching and support that allows them to flourish.

[…]Something has to give. Government has to take the needs of our children seriously, local authorities must be properly funded and their staff trained to make the best decisions for the people at the heart of this dysfunctional system – disabled children.

• From CNN: “Hundreds of young people with disabilities are learning at a new university founded by CNN Hero of the Year Jeison Aristizábal”

When Jeison Aristizábal became the CNN Hero of the Year in 2016 – the first from Latin America – he shared a powerful message for young people with disabilities and their families.

“I want to tell you that, yes, you can. You can dream and you can achieve your dreams,” he said.

Growing up with cerebral palsy in one of the poorest areas of Cali, Colombia, Aristizábal pushed himself to defy society’s expectations. He has dedicated his life to bringing therapy, education, and support to other young people with disabilities in his community so they can realize their potential.

[…]This year, he and his foundation realized yet another big dream: Building a university. Inspired by a group of older students from the program, the organization began construction two years ago.

“Today we have the first university for young people with disabilities in Latin America,” he said.

Now in its first year, with 300 students enrolled, the university offers a range of classes, including computer programming, 3D technology, graphic design, and languages. Students can also learn skills in culinary arts, carpentry, music, and tailoring.

“It has all the equipment so that people with disabilities can study in an accessible way,” Aristizábal said. “We have ocular technology, for example. Those who can’t move their hands or feet are operating computers with their eyes.”

Aristizábal says the focus is not only to help students attain their college education but to prepare them for employment so they can join the workforce, become providers in their families, and contribute to a variety of fields.

“The foundation is changing the concept of the word ‘disability,’ understanding that they can, that they’re capable,” he said.[…]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Each week, we showcase a picture of real life from the Medical Motherhood community. If you’d like to participate, simply reply to this email. What are you seeing this week?

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From The Oklahoman: “Oklahoma lawmakers to study corporal punishment for disabled students”

The two state lawmakers who tried unsuccessfully this year to ban the use of corporal punishment for public school students with disabilities will hold a joint study on the issue in October.State Sen. Kay Floyd, a Democrat from Oklahoma City, and Rep. John Talley, a Republican from Stillwater, said their study would focus on the use and effects of corporal punishment on public school students with disabilities.Corporal punishment usually is defined as a physical punishment designed to inflict pain on an individual.During the 2023 legislative session, Floyd and Talley co-authored House Bill 1028, which would have prohibited the use of corporal punishment on students identified with significant cognitive disabilities. The measure passed the House 84-8 in March but stalled a month later in the Senate.Floyd said some lawmakers had misconceptions about the bill. She said there was a concern the corporal punishment ban would apply to all public school students.

[…]Oklahoma is one of only 19 states that still allows the use of corporal punishment. At present, more than 60 state school districts still allow corporal punishment with parental consent.Nationwide, roughly 90% of the country's schools no longer use corporal punishment. Of the schools that do, most are located in Southern states, reports show.[…]

• From the Montgomery Advertiser: “Federal lawsuits allege 'systemic discrimination' of disabled kids in Alabama facilities”

Six federal lawsuits were filed Wednesday against Alabama Department of Human Resources Commissioner Nancy Buckner and State Superintendent Eric Mackey for their agencies’ roles in committing alleged “flagrant violations of the Americans with Disabilities Act.”

Each lawsuit was filed on behalf of a former resident of a state-contracted, residential youth facility in Alabama either by a guardian or, in one case, the former resident himself. 

They all allege similar situations where a child with a disability was segregated from nondisabled children and not provided an equal quality of education.

"We have filed these lawsuits not only for our clients but for every child in the state who has been robbed of the education they deserve,” Florida attorney Caleb Cunningham said.

[…] After years of abuse allegations coming out against state-contracted mental health facilities in Alabama, the [U.S. Department of Justice] definitively found that Alabama discriminates against foster care children who have emotional and behavioral disabilities by denying them equal opportunity to basic education. 

Cavanaugh’s lawsuit and the others filed on behalf of minors utilize the DOJ report as support for their claims. 

[…]All six lawsuits are requesting that a judge finds that the defendants violated federal law and award compensatory damages, statutory damages, attorneys’ fees and costs. […]

• From WCNC (Charlotte, North Carolina): “'It's devastating': Gaston County mother says discriminatory discipline stands in the way of daughter's education”

GASTON COUNTY, N.C. — In a state where public schools rely heavily on suspending and expelling the most vulnerable children, Black students with disabilities miss out on more classroom learning than their peers, records show.

A WCNC Charlotte investigation previously found North Carolina suspends and expels students with disabilities at length more than every other state in the country, per capita. The data shows most of those kids are Black.

[…]"It's devastating. It's traumatizing. It's embarrassing. It's deflating," [mom Sharlene] Smith said of the challenges her 12-year-old daughter Sydney, diagnosed with autism and ADHD, has faced. "It's a very demeaning feeling."

[…]Records show Sydney faced 14 days of out-of-school suspension last school year. A required review concluded Sydney's disability caused her aggressive behavior. The school district, with support from Sydney's doctor, eventually sent her home for the rest of the year.

[…]Sydney's experience is representative of a larger problem. Kids with disabilities who look like her are disproportionately disciplined.

[…]The National Education Association has also made this a priority, noting years of systemic racism and unconscious bias. President Becky Pringle said the group is pushing for policies focused on restorative practices that, instead of penalizing students, aim to address the root cause of their misbehavior.

[…]"I'm literally every single solitary day in a fight for her life," Smith said. "When she does this, even at 15 and she does this at Carowinds [Amusement Park], you're going to lock her up. That's what happens to our kids."[…]

• From Mondaq (France): “France: Paid Bereavement Leave Extended, Among Other Changes”

[A] New law in France strengthens job-protected parental leave and expands paid leave to care for a child with a serious health condition or for bereavement purposes.

[…]If a child is diagnosed with a chronic disease or becomes disabled, parents are entitled to five workdays of employer-paid leave (previously two workdays) when the diagnosis or determination of disability occurs.

[…]On request, parents of sick or disabled dependent children are entitled to request to work remotely. Employers may only refuse such requests (in writing) based on objective business reasons.

[…]In the event individuals are entitled to state-paid family allowances in relation to caring for a sick or disabled child (l'allocation journalière de présence parentale), the allowances may now be payable before the state medical assessment is finalized.[…]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From The Texas Tribune: “Texas parents who care for their disabled children full time will lose money after pay raise”

Inside an Austin high-rise north of the Texas Capitol in August, tearful parents lined up for a state health commission meeting to beg agency officials not to increase caretaking wages. It would backfire, they said. They would lose their livelihoods.

In a city where state officials typically hear pleas for more funding, this group of parents — many who serve as primary caretakers for their physically and mentally disabled adult children — pushed for the opposite. Some testified in groups, with their children sitting next to them as they spoke. Raising the wage by a small amount would take away their ability to log overtime hours without making up for the difference, and they knew better than most: caretaking was never a 9-to-5 job.

One parent who attended the meeting virtually broke down while sharing that she had to quit her job to start caring for her daughter, who was in a near-fatal car accident.

“You're only one accident away from my life,” the parent, who introduced herself as Jayne Moorman, told Texas Health and Human Services Commission officials through sobs.

Many of the group’s children depend on round-the-clock care paid for through a Medicaid waiver program known as Community Living Assistance and Support Services. This year’s state budget would slightly increase base caretaking wages, which advocates initially saw as a win after fighting to achieve it amid years of shortages, chaos and crises across the state’s Medicaid programs.

But it carried an unintentional consequence: shuffling funds took money away from the overtime hours that make up a big chunk of caretaker salaries. And in this program, most of the caretakers were family members who made their sole living through it.

[…]State Rep. Donna Howard, D-Austin, said that when she pushed for minimum wage increases in the Texas House this year, no one brought forward this potential consequence. She said she originally had pushed for a $15 base wage, but $10.60 was the legislators’ compromise. Howard formerly worked as a critical care nurse.

“You try to take a step forward, and it feels like you take at least another one or two steps backwards,” Howard said. “It was unintentional due to a lack of sufficient knowledge here on the part of legislators about how we need to address this. The service that these parents are providing is not only taking care of their family, but also reducing the overall cost of the state. And for us to not recognize that is dreadful. It's irresponsible.”

Howard added she thought someone, especially the state agencies involved, should have notified legislators that this might happen.[…]

• From NPR: “These kids used to get the bill for their own foster care. Now that's changing”

To Teresa Casados, who runs the department in charge of child welfare in New Mexico, it seemed like an odd question. At a legislative hearing in July, a lawmaker asked her if the state was taking the Social Security checks of kids in foster care — the checks intended for orphans and disabled children.

"My reaction really was: That can't be right," said Casados, who in the spring took over as acting secretary of New Mexico's Children, Youth & Families Department. "That can't be a practice that we're doing."

Casados and her chief legal counsel drove back to the office. "When we got back, we looked into it and found out it was a practice that the agency had for using those benefits — and had been going on for quite some time."

A 2021 investigation by NPR and The Marshall Project found this practice was the rule across the country. The investigation led to calls for reform. Now, 15 states and cities have taken steps to preserve the money of foster youth. Several other state legislatures are considering similar laws.

And last month, the U.S. Department of Health and Human Services and the Social Security Administration sent a letter to state and local child welfare agencies to encourage these changes.

The NPR/Marshall Project investigation found that in at least 49 states and the District of Columbia,when young people go into foster care child, welfare agencies routinely look for which ones come with Social Security checks. Or, if the children are eligible, agencies sign them up for benefits. Then state agencies cash those checks — usually without telling the child or their family, the investigation found.

States claim the money as reimbursement for the costs of foster care. But governments already have an obligation to pay the costs of foster care under state and federal laws. The result is that only impoverished kids, who receive Social Security benefits because they're orphans or because they're disabled or their parents are disabled, get a bill for their own foster care.

[…]Some child welfare advocates say the letter from Washington is a good first step, but they're disappointed that it didn't do more.

"The administration missed a leadership opportunity," says Amy Harfeld of the Children's Advocacy Institute, "to clarify once and for all that it is never in a child's best interest for their money and assets to be used by a public agency without their notice for the agency's own gain."

Harfeld says change is coming "from across the political spectrum," most recently in Arizona, Oregon and New Mexico, and in major cities, including New York, Philadelphia and Washington, D.C.[…]

• From the U.S. Department of Education (press release): “U.S. Department of Education Awards Nearly $199 Million to Improve Career Opportunities for Students with Disabilities Through Partnerships”

The U.S. Department of Education’s Rehabilitation Services Administration (RSA) announced today it will fund 20 model demonstration projects focused on improving economic self-sufficiency for children and youth with disabilities by creating systemic approaches to enhance post-school outcomes.

The nearly $199 million in funding for the Pathways to Partnerships innovative model demonstration project supports collaborative partnerships between state vocational rehabilitation agencies, state and local educational agencies, and federally funded centers for independent living to help individuals with disabilities seamlessly transition to life after high school, preparing them for independent living, competitive integrated employment and community integration. Pathways to Partnerships is the largest discretionary grant ever administered by RSA.

[The five-year grants will go to 20 different states — ranging from Colorado’s $14 million grant to Maine’s $7 million one. None of the West Coast states were selected.]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

On the second Sunday of every month, we feature Where is the Manual for This?!, an editorial cartoon about the medical mom life from Lenore Eklund.

It’s been an exciting week! Oregon Public Broadcasting’s Dave Miller interviewed me on Tuesday about the NPR story I co-reported on Medicaid dollars in schools. Oregon residents in particular may want to take listen as we zeroed in on some of the changes their new state plan amendment makes possible. You can listen to the Think Out Loud episode here: Medicaid makes changes to make it easier for schools to bill for services to students with disabilities

I’ve heard it is already making the rounds in both school and nursing circles — and parents are using the information to advocate for better services. Check it out to learn more about how Medicaid wants to make it easier for schools to get reimbursed for all sorts of healthcare delivered in school.

Also this week:

If you’re a Pacific Northwest resident or planning a trip here soon, check out my itinerary for an accessible tour of the Central Oregon Coast on Travel Oregon. For three days you and your kiddos could check out the massive dunescape on an accessible buggy, get hands-on with some sea creatures at the Charleston Marine Life Center or tuck in to some grub at The Boat Fish & Chips — a real boat turned into a restaurant! The article is completely packed with more options than you probably even want to do in a single journey — but showcases how much the travel industry is changing to be accommodating and inclusive, even in rugged rural areas. (Special thanks to my dad and erstwhile travel writer step-mom who lived in that area and helped me verify the options!)

If you’re more of a spatial or visual person, be sure to check the itinerary’s Google map for all the spots that we featured. If you end up at any of those attractions, drop me a line! I’d love to see where your travels take you.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From the Des Moines Register (Iowa): “Shortage of youth mental health services in Iowa reaches crisis; families are in despair”

In Iowa and across the country, demand for programs and services for some children with mental, behavioral and intellectual disabilities has reached a crisis point, triggering a high-stakes lawsuit against the state and pleas by advocacy groups and providers for action.

Almost three years after the isolation and anxiety of the COVID-19 pandemic began to exacerbate mental health issues for children, wait lists for psychiatric medical institutions for youth, also called PMICs, have reached new highs.

Worker shortages have hamstrung care providers, and some programs are shuttering for lack of financial support. Providers say children have become more suicidal and violent, placing additional pressure on their programs and their employees.

"Definitely we are seeing a level of higher acuity post-pandemic … unlike any of us have seen in our careers," Kelly Garcia, director of Iowa's Department of Health and Human Services, told Watchdog. "This is something we're struggling with as a nation."

Programming also is missing for children placed in the state's care after being removed from their homes because of alleged neglect or abuse. Congress took dramatic steps in 2018 with passage of the Families First Preservation Services Actto shift federal child welfare money away from long-term congregate care settings for kids.

[…]From the state's 2019 fiscal year through its 2023 fiscal year, the number of group home beds for youth in the child welfare system tumbled by nearly half, to 357 from over 660. Shelter beds dropped by 55% and now number just 107 statewide, according to data obtained under Iowa’s open records law from Iowa's DHHS.

The number of licensed foster care homes available to temporarily house abused and neglected children across the state also hit a low point, dropping 20% since 2019 to 1,635.

[…Jane Day, a Des Moines mother, says she needs more help for her daughter.]

“She’s going to kill herself or be killed. That’s my constant fear,” Day said. “It’s been exhausting. Mentally and physically exhausting. I function at work, but our home life is completely chaotic. The worrying ― and just trying to make sure she gets what she needs ― is constant.”

Her daughter, who asked not to be identified because of her mental health struggles, said she experienced a constant lack of available programs while growing up, a situation made worse by the way people judge young people with depression, anxiousness, a desire to isolate and other challenges.

"It feels like people just want to push us away," she said. "It feels like they don’t understand what we go through. When we try to get the help we need, we can’t get the help we need. It’s more like people don’t care."

• From ABC 7 (New York): “Mom saves fussy baby's life after taking child to 3rd hospital despite 2 others insisting all was OK”

The mother of a 5-month-old girl knew something was wrong with her baby despite what some doctors were telling her.

Faustina Cavero said she could see the glow was gone from her baby girl's face.

"I'm like 'Oh my god.' I know something is wrong with my baby, her eyes are rolling back,'" Cavero said.

Out of nowhere, Faustina says her 5-month-old daughter Aaliyah's face turned pale serious and then she began to spasm.

"She was just crying and fussy, and I'm like 'Mom she's making these moves, but I don't know what's wrong with her,'" Cavero said.

The mother of four had never seen something like this, so she took her to a hospital where she says she was quickly dismissed.

"They had told me I was under stress because I didn't get no sleep," Cavero said.

So she got a second opinion.

"I told them I took her to this hospital and they told me I was under stress," Cavero said.

Discouraged and scared, Faustina took Aaliyah home, but the spasms didn't stop.

Faustina trusted her gut and decided to seek a third opinion at Mount Sinai on Manhattan's Upper East Side.

"when I went in there, showed her the video, and that's when she said she's getting admitted," Cavero said.

Aaliyah was admitted on that day, and a team of doctors quickly got to work.

[…]Aaliyah was treated for infantile spasms and continues to receive care and monitoring at Mount Sinai.

Fast forward about a year and a half later and Aaliyah is thriving and will soon celebrate her second birthday.

A grateful Faustina hopes her story serves as a message and a warning for every parent.

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Each week, we showcase a picture of real life from the Medical Motherhood community. Please send in your pictures! What do you want people to know about the #medicalmom life?

Thank you for all the kudos on the NPR story last week and welcome to those of you who are new subscribers! Your readership is appreciated.

Those of you who are local to the Portland area — or who want to check out the feed online — should tune in to OPB Radio this Tuesday at noon. Sometime during that hour, I’ll be speaking with host Dave Miller about the potential for Medicaid money in Oregon schools. We’ll also look at some of the local barriers that are still in place that could stymie federal efforts to get all kids on Medicaid access to medical and behavioral health care while at school.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From CNN: “An ‘obscene’ number of kids are losing Medicaid coverage”

For months, Evangelina Hernandez watched helplessly as her autistic twin sons regressed – their screaming, biting and scratching worsening. The Wichita, Kansas, resident couldn’t afford the $3,000 monthly tab for their 10 prescriptions or their doctor visits without Medicaid.

The toddlers, along with three of their sisters, lost their health insurance in May, swept up in the state’s eligibility review of all its Medicaid enrollees. Hernandez said she only received the renewal packet a day before it was due and mailed it back right away. She also called KanCare, the state’s Medicaid program, and filled out another application over the phone, certain that the kids remained eligible.

Yet, every time she inquired about the children’s coverage, she was told the renewal was still being processed. And though her partner works for an airplane manufacturer, the family can’t afford the health insurance plan offered by his employer.

“My kids are suffering. You can see it,” said Hernandez, who along with her infant daughter, remained on Medicaid thanks to coverage provisions for low-income, postpartum mothers and babies. “The medication they’re on, I can’t afford it.”

Just over a week ago, Hernandez got the call she had been waiting for: The kids’ coverage was reinstated. However, the pharmacy told her it could not immediately fill her sons’ prescriptions because it had to get their new enrollee information – and even then, she could only pick up the medication for one son because there were errors in her other son’s file.

The delays have consequences. Once they start taking the medications again, it will take about a month before their behavior starts to improve, she said.

All across the US, hundreds of thousands of children are being kicked off of Medicaid, even though experts say the vast majority continue to qualify. They are among the more than 87 million people in Medicaid and several million more in the Children’s Health Insurance Program who are having their eligibility checked and are facing possible termination of coverage for the first time since the Covid-19 pandemic began.

States regained the ability to start winnowing their Medicaid rolls of residents whom they deem no longer qualify on April 1, when a pandemic relief program expired. Since then, at least 5.4 million people have lost their benefits, according to KFF, formerly the Kaiser Family Foundation.

[…]As many as 6.7 million children are at risk of having their benefits terminated during the so-called unwinding process, according to Georgetown University’s Center for Children and Families. Roughly three-quarters of them are expected to remain eligible for Medicaid but will likely lose coverage because of administrative issues, such as their parents not submitting the necessary paperwork or errors made by state Medicaid agencies.

[…]In Kansas, where nearly 46,000 youngsters have been disenrolled so far, multiple groups are setting up tables at back-to-school events, working with school nurses and doing outreach through early childhood organizations, said Heather Braum, a health policy adviser at Kansas Action for Children.

[…]However, more should be done to improve the system and make sure eligible children maintain their coverage, Braum said.

“Kids’ medical care in so many situations can be very time sensitive – where they’re getting therapies and treatments and prescriptions,” she said. “If it gets delayed, it can have a permanent impact on their lives. Outcomes can be very different. And that’s inexcusable to me.”

• From The Washington Post (columnist Theresa Vargas): “For disabled D.C. students, an uncertain wait on school buses remains”

Elizabeth Daggett felt so skeptical that her son’s bus would show up on time for the first day of school that she took the morning off from work.

By 6:40 a.m., just in case she was wrong, she made sure her 12-year-old son, Henry, who attends a school for children and young adults with intellectual disabilities, was dressed and ready.

By 6:52, a.m., to her surprise, she watched a bus pull in front of the family’s D.C. home. In that moment, it seemed, her worry had been unwarranted.

By 7 a.m., the brief hope she held for an easy morning was gone. She watched that bus [which didn’t have the right equipment for her son] drive away, without her son on it.

[…]Not knowing when the replacement bus might arrive, Daggett decided that when her husband returned with their car after taking their other children to school, she would drive Henry to his school, St. Coletta of Greater Washington. His school day is supposed to start at 8:30 a.m. They walked into the building at 9:15.

When students arrive late, parents are expected provide a reason for their tardiness on a sign-in sheet. As Daggett signed that paper, she noticed the word “bus” appeared more than once.

Bus issues on the first day of school aren’t unusual. They happen every year in communities across the country. But in D.C., parents of disabled students spent several months during the last school year pleading with the city to fix issues that were causing buses to arrive late or not at all, leaving families facing daily uncertainties that derailed the schedules of parents, students and educators.

D.C. is responsible for providing buses to transport students with disabilities to their schools, but the unpredictability of those buses has caused parents to miss work, students to miss school, and educators who had already worked long days to stay longer. It has also caused children to arrive home late, sometimes soaked in urine.

City officials in the spring acknowledged the need for improvement. They pointed to a national bus driver shortage and staff call-outs as forcing them to make complex decisions about routes, and they said they put in place several measures to improve service. The Office of the State Superintendent of Education’s division of student transportation held a hiring fair, launched an employee attendance incentive and created a website to list which routes were running late.

When school started Monday, families weren’t sure what to expect. But what some have experienced so far has not eased their worries. I spoke with several families who said more work is needed. They said that they have seen improvements when it comes to the number of routes being covered, but daily uncertainties remain because of late or unprepared buses and a lack of communication. […]

“Having a child with special needs, you are facing roadblocks in many parts of your life,” [dad Andy McKinley] said, “and it would be nice if this part of the school system worked as it should.”

[…]“Resigned” is the word [mom Caitlin] Givens used to describe how she was feeling that day. “We’ve been dealing with this for so long. We pretty much just expect it to not function well,” she said.

[…]We live during a time when we can tell how far our food delivery is from our house. These parents shouldn’t have to put Apple AirTags on their children to know when they might get home. The city can fix these communication issues, and it should do it sooner rather than later. Already, families have waited too long.[…]

• From The Guardian: “Lego to sell bricks coded with braille to help vision-impaired children read”

Lego is to begin selling bricks coded with braille to help blind and partially sighted children learn to read the touch-based alphabet.

The Danish toymaker has been providing the specialist bricks, which were tested and developed in partnership with blind organisations around the world, free of charge to a selection of schools and services catering for vision-impaired children since 2020.

From next month, shoppers will be able to buy packs of the bricks, which have studs corresponding to the braille version of numbers and letters with a printed version of the symbol or letter below, to use at home.

Lego hopes the initiative will help parents and siblings share in learning braille, and the packs will include ideas for a range of educational games that families can play together.

[…]Lisa Taylor, mum to seven-year-old Olivia, said: “Olivia first discovered Lego braille bricks at school and they had such a big impact on her curiosity for braille. Before then, she found it hard to get started with the symbols but now she’s improving all the time.”

[…]“To have a set at home changes everything. We can play with braille together as a family and she can introduce braille to her little sister in a way they both love. Lego braille bricks are accessible for her without being really different for other kids, so she gets to play and learn just like every other child,” Taylor said.

The packs aimed at children aged six and over will be available to buy in six English-speaking countries including the UK, Ireland, the US and Australia, and five French-speaking countries including Belgium, Canada and Switzerland. Italian, German and Spanish versions are expected to launch next year.[…]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

I had a long commute in high school. Since she worked near my school, my mom would drive me the 30 or so minutes every morning, but I would have to take a 2-hour bus ride home. We could never agree on the music. She wanted to listen to Oldies or Classic Rock, but I wanted to listen to Alternative or Pop.

There was one thing we finally agreed on: National Public Radio.

I had known I wanted to be a writer since the age of 6. But after a couple of years of listening to NPR with my mom on my way to school, that was when I decided to be a journalist.

So it is with great pleasure and absolutely no attempt at playing it cool that I announce that I officially have a byline on NPR!!! I only wish my mom were still alive to see it.

I even recorded two radio thingies — one was a 50-second spot that people have told me actually played on Oregon Public Broadcasting, but I have yet to hear. The other was a 3-minute interview with Leila Fadel for the Up First podcast, but that unfortunately got bumped for breaking news.

This story and its reach would not have been possible without my friend and Medical Motherhood subscriber Emily Harris. (For those who aren’t huge public radio nerds like me, she is kind of a big deal! Now at Axios Portland, Emily hosted Think Out Loud on OPB for several years, then covered the Middle East for NPR and until recently reported in-depth pieces for Reveal.) She recognizes all of the underreported stories in this medical motherhood space and has been a huge supporter of getting them out in the world.

And that has truly been the best part about this NPR story: seeing and hearing how much it has resonated with the audience.

It was not an easy story to report. Much like the Special Needs World web of bureaucracy that ensnares parents of disabled children, even basic questions took an exceedingly long time and several rounds of back and forth to answer. Several reporting routes were simply dead ends. But, in the end — and with the able help of NPR Editor Nicole Cohen, and our patient sources — we managed to put together a report that shows the logistics, emotion and complexity in offering Medicaid funding for school-based services.

Still haven’t read it? You are in luck! NPR is giving me special permission to read the entire web story for my podcast listeners. Just scroll up and push play.

If you prefer a written version, head to this link:

Schools could be getting millions more from Medicaid. Why aren't they?

I also highly recommend listening to Emily’s 7-minute story. Just click the blue play button above the adorable picture of medical mama Jenny Eckart Hoyt and her daughter Winnie. You can also read her more Oregon-centric version on Axios.

I plan to continue expanding on this coverage. If you like that idea, your subscriptions allow me to prioritize that work.

The U.S. Department of Education is proposing a controversial idea to skip the parental consent requirement for Medicaid services in schools. Proponents say it will streamline the process and get kids access without additional paperwork for busy parents. But others worry it’s a way for the government to overstep in a child’s health decisions. In any event, it is already a hot controversy in the special education space. Follow along by subscribing to Medical Motherhood and asking your friends to subscribe as well:

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Spectrum News (New York): “Two-thirds of schools are not fully accessible to those with physical disabilities, report finds”

[…]A new report from Advocates for Children found that two-thirds of the city’s public schools are not fully accessible to people with physical disabilities.

There are more than 1,400 school buildings in [New York City], some of them housing multiple schools.

This school year:

• Only 34% of those school buildings are fully accessible

• Nearly 20% are partially accessible

• Almost 5% are not fully accessible, but are in the pipeline for improvements

• And 41% of buildings are fully or functionally inaccessible.

AFC uses the term functionally inaccessible for buildings a wheelchair user may be able to enter, but which doesn’t offer any classrooms on the first floor, meaning they’re not an educational option for those students.

A partially accessible school has classrooms a child can access, but they may be cut off from huge parts of the building.

“You might be able to get in the door, but there might be whole areas of the building that are totally off limits. So you can’t get into the science lab. You can’t take that class or you can’t participate in certain clubs. You aren’t a full member of the school community,” [Sarah Part, senior policy analyst at Advocates for Children,] said.

While the numbers are stark, they represent an improvement from 2018 — when AFC found just 19.5% of schools fully accessible. That, along with a 2015 investigation from then-U.S. Attorney Preet Bharara, spurred the city to invest $750 million in its capital plan to make improvements. […]

• From Home Health Care News: “Home-Based Care Providers Break Down ‘Unintended Consequences’ Of CMS’ Proposed Medicaid Rule”

A proposed rule from the U.S. Centers for Medicare & Medicaid Services (CMS) – which would require at least 80% of Medicaid reimbursement for home- and community-based services go toward worker compensation – received over 2,100 submissions during its public comment period.

Many of the comments included gratitude and appreciation for CMS regarding its efforts to enhance the HCBS workforce. But concerns persist over how the rule would affect HCBS providers across the country.

[…]Like many of his colleagues across the industry, [Addus HomeCare Corporation Executive Vice President Darby] Anderson wrote and reiterated what others have told Home Health Care News when the proposed rule came out: that implementing a standard minimum percentage threshold without studying the potential impacts of the 80% rule will likely result in unintended consequences.

Those consequences could include smaller providers going out of business and larger providers leaving certain markets, thus reducing access to care.

[…]More clarity on what CMS ultimately plans to do should come in the third or fourth quarter of this year.

• From The Oklahoma City Sentinel: “Accessible Smart Home technology available for Oklahomans with disabilities”

OKLAHOMA CITY — Oklahoma Human Services, in collaboration with ABLE Techand Bethany Children’s Health Center, have opened two Smart Home demonstration sites to showcase remote support and enabling technologies for families on the Developmental Disabilities Services (DDS) waitlist, as well as families already on DDS waiver services.

A Smart home allows individuals to control appliances, thermostats, lights, and other devices remotely using a smartphone or tablet connected to the internet.

[…]The home also features assistive technologies, such as wheelchair ramps, a roll-in shower and widened doorways to increase accessibility and safety.

[…]The Smart Home features enabling technologies designed for remotely controlling appliances, dispensing medications and detecting seizures, the result being increased safety and convenience for the user. From video doorbells to induction stovetops and grab bars, these technologies empower individuals with disabilities to navigate their daily routines with greater confidence.

In addition, the Smart Home offers remote support options, as well, highlighting how the increased independence afforded by these technologies allows for individuals to be supported by off-site staff rather than in-home care. […]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Psst. I’m very excited for Morning Edition this Thursday on NPR, as well as their Up First podcast. I can’t reveal too much yet, but there will be links in the next edition of Medical Motherhood! Be sure to tune in if you want to hear the results of this long-time-coming investigation.

Also, a couple of weeks ago, I told you that my feature in PDX Parent was out in the August edition of the magazine. You can now read the full piece online at this link. I’ve gotten a lot of positive feedback on the piece and hope it has impact as we move into the new school year. The second part in the series will be out in November and will focus on legislative changes in Oregon.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Arizona’s Family (News): “Arizona parents of disabled children ask for changes in proposed caregiver program”

In 2020, Arizona allowed parents of children enrolled Department of Developmental Disability (DDD) and Arizona Long Term Care System (ALTCS) to be certified and trained direct care workers (DCW) for their children.

The program, Caregiver Benefits for Parents, reimburses parents for providing care to help with the current shortage of providers. Currently, it’s set to end in September. However, the Arizona Health Care Cost Containment System (AHCCCS) has proposed to keep the program permanent but with some changes [such as a 40-hour work week].

[…Arizona mom Brandi] Coon said she’s learned a lot about what her son’s needs are. So when AHCCCS introduced this program, she knew her son would always be in good hands. “We’re really able to customize what that child needs and know that child the best to facilitate their care and their daily needs and daily activities of living,” Coon said.

Right now, 16,880 total children are living at home and receiving home and community-based services [in Arizona]. Of those, 3,469 are being served by parents as paid caregivers.[…]

• From Oregon Public Broadcasting: “Centralia School District sued after kindergartner was repeatedly isolated”

For a kindergartner with autism in Centralia, [Wash.,] a padded isolation room became a regular sight. Teachers locked him there, sometimes for nearly an hour, when they felt he disrupted class.

But school staff allegedly failed for months to tell his mother that they had been stowing him away while he was at school, according to a new complaint filed in Lewis County Superior Court.

Ashlee Fitch said she found out by accident.

[…]Fitch didn’t receive any information for months, the complaint alleges. The district reportedly mailed paperwork to an outdated address — an address that Fitch had corrected to the district on three separate occasions.

The complaint also noted that teachers had multiple in-person conversations with Fitch and never discussed restraining or isolating her son. On Dec. 10, for example, she met with the district to discuss his individualized education plan and yet “had absolutely no idea G.F. was being restrained or isolated at school.”

[…]When a staffer made an off-handed remark on Jan. 24 about Fitch’s son and the isolation room, she was “shocked and confused.”

“When she inquired for more information, she was finally informed that the district had been locking G.F. in the isolation room almost daily for the last couple months,” the complaint said.

Fitch then wrote to school officials that she was “pissed.”

“This is ABSOLUTELY RIDICULOUS to not give a 5-year-old recess and lock him up like a crazy person in a psych ward,” Fitch wrote in an email.

School staff continued to put Fitch’s son in the isolation room the next month. The practices continued when they moved to another school in the district.

In August 2022, the district transferred Fitch’s son to a school specialized for children with behavioral issues. The complaint reported that he has not had an issue since.

Dr. Lion Enns, a behavioral health specialist based in Bellevue, wrote in a report that G.F. underwent “immeasurable harm” from his treatment while attending Centralia School District. He diagnosed Fitch with post-traumatic stress disorder, attention-deficit/hyperactivity disorder and autism.[…]

• From USA Today: “Sex ed for people with disabilities is almost non-existent. Here's why that needs to change.”

[…]As sex education loses funding and becomes more restricted in scope and access, individuals with disabilities are often left out of even the most basic programs. Only five states mandate inclusive sex education for people with disabilities, and two of those are optional, while 36 states don't mention sex education for special needs at all. This lack of inclusion leaves individuals with disabilities to rely on parents and media for information, which is often incomplete, inaccurate or absent altogether.

[…]Here are the biggest things to understand:

• People with disabilities are just like the rest of us when it comes to sex: Most people with disabilities are not asexual nor are they hypersexual with uncontrollable urges. Limiting their experiences minimizes their potential for self-exploration and sexual wellbeing.

• Consent is as important as ever: Disempowering individuals with disabilities to assert their needs and desires makes them vulnerable to sexual assault and unhealthy relationships.

• For many, infantilization never ends: Guardians and support networks often treat people with disabilities as perpetual children, avoiding discussions about sex and relationships. This leaves them without a safe space to learn and explore their sexuality.

[…]These barriers to sexuality have serious consequences. Children with disabilities are four times more likely to experience sexual assault than their peers, increasing to seven times more likely as adults.  Between 40% to 70% of girls with disabilities and up to 30% of boys experience sexual assault before the age of 18.  Women with disabilities are more than twice as likely to contract sexually transmitted diseases than their peers. Loneliness and mental distress are much more prevalent among adults with disabilities due to social isolation and stigma around dating and relationships.

[…]Promoting sexual equality for people with disabilities is essential for their overall wellbeing and happiness. By breaking down barriers and having open conversations, we can create a more inclusive and supportive society for everyone.

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Whew, it has been a long dry spell since you’ve been able to see my freelance work, dear readers. That doesn’t mean I haven’t been working on stories for months, but somehow everything is coming out in August!

PDX Parent has published the first part of a two-part series on the State of Special Education in Portland. Right now you can read the whole piece on pages 14-17 of the digital version of their print edition. A link to the web story is coming soon.

EDIT (8/19/23): Here it is! https://pdxparent.com/unmet-needs-the-state-of-special-education-in-portland/

Here’s an excerpt:

At first, Neil Haigh was not that alarmed. This was early January and the Southwest Portland dad had gotten a call from school that his daughter Mattea’s feeding tube had come out, so could he please come fix it?

Mattea, a 10-year-old with blue eyes and golden hair, is nonspeaking and needs a range of medical supports, such as her gastronomy tube or “g-tube” that attaches like an earring in the wall of her stomach to provide her nutrition. 

Haigh replaced the g-tube, and suggested that  the Markham Elementary School staff receive additional training. But a staffer tipped him off that it wasn’t necessarily an adult who was responsible for the g-tube situation and when he got Mattea home, he noticed bruising on her arms. 

“It felt like a bit of a cover-up and that’s when I got more involved,” Haigh says. 

After weeks and hiring a legal team, the family finally got a copy of the incident report.

“[A student, name redacted] pulled out another student's ‘mickey button’ which is part of their feeding apparatus,” reads the report. “The button was under the student's clothing. Removing this button in this way takes significant force and it is painful to have it ripped out of the stomach.”

Mattea’s parents were shocked. Haigh started organizing with other classroom parents and discovered that the incident was just the “tip of the iceberg.” Kids were getting hurt, other parents alleged. Even worse, the classroom was struggling with a two-year-long string of teachers and support staff who had quit or left without returning, often citing a lack of support and safety.

“What happened to Mattea was awful, but it was a result of years and years of malpractice,” Haigh says. “We have no beef with (the child who removed Mattea’s g-tube). That kiddo is just a kiddo who has a lot of needs and wasn’t being adequately supported.”

There are 6,916 different experiences of special education in Oregon’s largest school district because, at last count, there are 6,916 special education students in Portland Public Schools (PPS). Guided by Individual Education Programs or IEPs — a team-designed plan for each disabled student’s particular needs — special education can be as simple as providing extra time to finish a test or as challenging as providing a one-to-one adult who can constantly, consistently, and instantly set expectations, react to changing conditions and buffer explosive behavior. 

By some metrics, PPS’ special education department is doing well. The vast majority of special education students are integrated into the general education environment at least 40% of the time, with 81.3% integrated 80% or more of their day. The graduation rate for special education students sits at 82.4%, which is higher than the state target.

“PPS can stand up and be proud that that's true,” says PPS Student Support Services Chief Jey Buno, of these statistics. “Because that's not the same case everywhere else.”

Nevertheless, many people PDX Parent talked to for this series described a crisis in the district: safety risks to children and staff, overwhelming caseloads and a lack of action at the top. […]

Read the full story for free at PDXParent.com: Unmet Needs: The State of Special Ed in Portland Pages 14-17

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Psychology Today: “Supermoms of Children With Disabilities”

[…]Since [her son’s autism] diagnosis, Cara’s days had been consumed with doctors, therapists and school authorities in charge of educational supports for Ray. Not surprisingly, she looked exhausted. “It’s a war,” she said grimly. “It’s a battle to get Ray the services he needs.”

I left the conversation with a sense of unease and anxiety about Cara and other mothers like her. After all, wars always incur costs, not only in dollars and cents but in human suffering and loss. I worry about the costs of the struggles Cara is going through, not only to her but also to her family, community and society at large.

We need to envision and create a system in which the care and support of persons with disabilities do not pit families against the bureaucracies and institutions that are supposed to be helping them.

The parents of children with ASD have exceptionally high levels of stress and mental and physical health issues. The work of advocacy, of negotiating for appropriate care and services for children, is a focal point of pressure. Along with the daily tasks of life, of making sure the rent is paid and food is on the table, the parents of children with disabilities are in a battle of advocacy—of navigating a dense and maze-like set of medical and educational institutions in order to access and coordinate appropriate services for their child.

[…]The Supermom/Good Advocate Mother is a myth that can inspire and empower mothers who are negotiating services for their child. At the same time, the myth fosters unrealistic expectations. If mothers in general are susceptible to guilt, the mothers of children with disabilities are especially prone to feeling like they are not advocating effectively enough for their child and that they are not measuring up to the ideal. The myth also sets the groundwork for blaming mothers for the unsatisfying progress of their child.

[…]The families of children with disabilities have played and continue to play a critical role in disability rights movements and initiatives. Their contributions include the development of such organizations as Special Education Parent Advisory Councils (SEPAC) and Parent Training and Information Centers that are charged with helping the families of children with special needs. These are important sources of support.

Still, when I think of Cara, I know there is more that needs to be done to support mothers like her.

Bottom line, parenting a child with disabilities shouldn’t feel like a war.

• From WTOP News (Virginia): “Va. families file complaint with AG alleging disabled students’ rights were violated”

Families of children with disabilities have filed a complaint with the Virginia attorney general’s office, calling for an investigation into state education authorities and the Fairfax County School Board for allegedly violating the rights of students with disabilities.

In the complaint filed last week, the families say the Virginia Department of Education “oversees a systemically defective educational system” that is “designed to obstruct, delay and ultimately prevent families with disabled children from receiving and vindicating their educational rights.”

[…]Trevor Chaplick, one of the parents who filed the lawsuit, said [Virginia Attorney General Jason] Miyares’ office should investigate “these many violations of students rights over the years, including the hearing officer system, in which the statistics that we’ve broken through a FOIA investigation are just scandalous. We’re just two families trying to correct and reform the system.”

The complaint filed with Miyares’ office asks the attorney general to investigate the school system under the Virginia Human Right Act [….]

[…A]ccording to the complaint, in Northern Virginia, over 80% of hearing officers have never ruled in favor of a disabled child in the last decade. Chaplick calls the discrepancy a scandal and violation of disabled [students’] parents’ civil and federal rights.

Parents, Chaplick said, “have no idea that they’re wasting their money on lawyers and experts that statistically, they have no chance, that the parent prevailing rate is less than 2% in Virginia.”[…]

The U.S. Department of Education has separately initiated several investigations into whether Virginia school systems have complied with the IDEA, and in June, Virginia’s compliance level changed from “Meets Requirements” to “Needs Assistance.” That’s expected to result in more oversight from the federal agency.

A Virginia Department of Education spokesman didn’t respond to a message seeking comment on the complaint. […]

• From Disability Scoop: “Feds Extend Lifeline To Disability Service Providers”

Federal Medicaid officials say they will extend some flexibilities for home and community-based services that emerged during the pandemic in a bid to help the beleaguered disability services sector stay afloat.

In guidance issued this week, the Centers for Medicare and Medicaid Services said that states can continue relying on changes that were adopted during the COVID-19 pandemic while they work to officially incorporate them into their waiver programs.

[...]Previously, states were told that flexibilities provided under what’s known as Appendix K would expire by Nov. 11, six months after the end of the public health emergency. Now, however, CMS says that states can act to extend that deadline.

[…]States have used regulatory flexibilities offered during the pandemic to allow family members to be paid as caregivers, to introduce remote supports and to alter services and reimbursement to address staffing issues, among other things, advocates said.

The extra wiggle room in extending these changes has been long sought by disability service providers who have struggled mightily to attract and retain direct support professionals, among other challenges, in recent years. A survey last fall found that 66% of providers were concerned that vacancy and turnover rates would increase once regulatory flexibilities and COVID-19 relief funding come to an end.

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From the Miami Herald: “In blistering order, judge tells Florida to stop blocking effort to aid medically frail kids”

The battle of wills between Florida health administrators and a federal court judge intensified Tuesday as U.S. District Judge Donald M. Middlebrooks accused the state of obstructing his efforts to free medically fragile children from segregated institutions, where many have spent their entire lives.

Late last week, the Florida Agency for Health Care Administration asked Middlebrooks to stay an injunction he signed a week earlier requiring the state to reform its system of care for 2,750 children with medical complexities. The linchpin of Middlebrooks’ plan is a requirement that the state ensure such children receive at least 90% of the at-home nursing care prescribed by their doctors.

The injunction capped a two-week trial in May — and a 12-year litigation Middlebrooks repeatedly has castigated as shameful — over claims by the U.S. Justice Department that Florida is violating the Americans with Disabilities Act by steering severely disabled children into nursing homes. Virtually all of the youngsters, Middlebrooks wrote, could be safely cared for at home with sufficient help from the state.[…]

But Florida health regulators instead have left families with little choice but to leave their children in institutions by making it extremely difficult for parents to access adequate private-duty nursing, Middlebrooks wrote.

A total of 2,750 children in Florida require constant nursing care, Middlebrooks wrote, and parents have complained bitterly for years that low reimbursement rates under Medicaid, the state’s insurer of last resort for impoverished and disabled Floridians, have made in-home care difficult to access.

[…Florida health agency] lawyers said it would be “impossible” for the state to comply with Middlebrooks’ injunction. And doing so, the state said, would force health administrators to redirect scarce health dollars from other deserving groups.

“Beyond the shadow of a doubt, the state will violate the injunction through no fault of its own, and despite its best efforts, because the provision of 90% of [private-duty nursing] hours to 2,750 children in the midst of a nursing shortage is simply impossible.” the state argued.

[…]“These children deserve better, as do those whose taxes are already paying for these services,” Middlebrooks wrote of the medically complex children at the center of the current litigation. “I caution the state against foot-dragging in complying with the injunction. This issue is too important. And for the families involved, the stakes are too high.”

As to the argument that it lacks money to provide 90% of the nursing care doctors order, Middlebrooks reminded the state that it is already paying its managed-care organizations to deliver 100% of what doctors prescribe — a contractual requirement the state has never enforced. […]

• From Disability Scoop: “Ed Department Tells States To Step Up IDEA Compliance”

Citing a pattern of failures, federal education officials are issuing new guidance pressuring states to improve their oversight of special education programs.

The 45-page document released this week by the U.S. Department of Education outlines steps that states should take to enhance their monitoring of IDEA and ensure compliance in school districts and early intervention programs.

Specifically, it indicates that states should monitor every school district and early intervention program at least once every six years and states “may not ignore credible allegations about potential noncompliance” even if they come outside of the regular visit cycle. In cases where a program is not compliant, states must issue such a finding in a timely manner, generally within three months, and they must ensure that the issue is corrected for each individual child, the guidance states.

[…]The Education Department said that it issued the guidance in response to “multiple requests from a diverse group of stakeholders for updated and consolidated guidance interpreting the general supervision requirements of states” under IDEA.

The information comes less than a month after the Education Department released its annual IDEA determination letters. The federal agency is required to evaluate each state’s performance under the law annually. For the 2021-2022 school year, just 22 states met requirements for providing special education to students with disabilities ages 3 to 21.[…]

• From The Texas Tribune: ““Scared out of my mind”: A family scrambles after their disabled 3-year-old loses Medicaid”

“Parents of medically complex children can’t afford for emotion to take over,” [mom Jodi] Whites, of New Braunfels, said. “You get into the parking lot of the ER, you wipe your tears, you get your kid and you go. You can have your breakdowns once the doctors have seen them.”

But her daughter Amelia can’t see her doctors anymore. She can’t undergo scheduled brain tests because the Medicaid coverage that provided access to all her treatment — for her six congenital heart defects, her cerebral palsy and her autism — was revoked.

Amelia is one of half a million Texans booted from Medicaid — the federal health insurance program for low-income individuals — after three years of continuous coverage during the pandemic, when federal regulations prohibited moving anyone off of the rolls. Around 5 million Texans rely on Medicaid, which mainly provides health coverage for children, but some adults with disabilities and pregnant women can also receive benefits from it.

The state intended to remove people who are now ineligible, including children who turned 18, aging them out of qualifying, and women months out of their pregnancies. But many eligible Texans have also lost coverage for reasons including procedural errors like not sending in renewal applications on time, jeopardizing their ability to access consistent care.

But according to a letter addressed this week to the executive commissioner of the state agency that manages Medicaid for Texans, the Texas Health and Human Services Commission, approximately 80,000 eligible people have “lost coverage erroneously.” The letter, obtained by The Texas Tribune, was written by HHSC employees who did not name themselves, signing off only as “Concerned Texans and Dedicated Employees.”

[…]Jodi Whites said she had believed Amelia’s coverage would continue. She said she didn’t receive any communication from the state that her renewal application was denied until two weeks before she lost coverage.

“As soon as I saw that denial, I could not breathe. I could not think. I was scared out of my mind,” she said, “because I know what a loss of coverage for Amelia means.”

[…]Medicaid covered more than [nursing] services for Amelia. It also provided regular supplies for her gastrostomy tube and oxygen, which she needed when she couldn’t breathe. A company working with Medicaid removed the supplies for providing oxygen on Thursday from the Whites’ home.

For her gastrostomy tube, Amelia needs access to syringes, special pump bags and formula. Whites paid out of pocket for a set of syringes once, but it was too expensive, and since then she’s been outsourcing to Facebook to reach families of children with similar needs. Some parents from other states have shipped her their leftover supplies. Others have asked her to pick them up, leading Whites to drive hours to different parts of the state to keep Amelia going.

“We learn to take care of one another as medically complex parents because we can’t always depend on the state for services,” Whites said. “We take care of each other and our kids.”

[…]Amelia qualifies for a Medicaid waiver program that guarantees coverage, but she’s one of 6,012 people on a waiting list, her mother said.

[…]State Rep. John Bucy III, an Austin Democrat on the House Select Committee on Health Care Reform, said his office has heard the “unwinding” has not gone well for many bureaucratic reasons that should be fixable. He said the systems used to manage Medicaid eligibility should be modernized.

“There’s no other way to say it: We’re in a crisis,” Bucy said. “This is terrible for Texans. But we’re coming back and this should not wait for the next session for the Legislature to act. This has to be dealt with now.” […]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Medical Motherhood is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.

Each week, we showcase a picture of real life from the Medical Motherhood community. If you’d like to participate, simply reply to this email. The intent is to show YOUR experience as a medical parent. What do you want people to know about the #medicalmom life?

I’m running low on submissions, so if you send a picture it just might get featured! Remember: no kids’ faces. Focus on their equipment, your hands doing procedures or even your face!

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From CBS News: “Nearly 1 in 10 U.S. children have been diagnosed with a developmental disability, CDC reports”

The share of American children who have ever been diagnosed with a developmental disability increased again in 2021, according to a new report from the Centers for Disease Control and Prevention, and now more than 1 in 10 boys have had an intellectual disability, autism spectrum disorder or another developmental delay.

Among kids ages 3 to 17 years old, 8.56% have ever been diagnosed with any developmental disability as of 2021, according to the latest results from the agency's ongoing National Health Interview Survey.

"We're interested in understanding the prevalence of these conditions in the population so that we can make sure we have adequate services available for families and children who need them," said Benjamin Zablotsky, a statistician for the CDC's National Center for Health Statistics and lead author of the new report.

[…]From 2019 to 2021, rates of intellectual disability or autism spectrum disorder did not increase by a statistically significant amount. The report found 1.65% of children had an intellectual disability and 3.05% had autism.

The only category that increased significantly was parents reporting having been told their child had an "other developmental delay"  — a grouping that can include a range of other issues, like cerebral palsy or struggles forming words. That group increased from 5.08% of kids in 2019 to 6.06% in 2021.

"A lot of times developmental delays might be temporary diagnoses that evolve into something like autism, potentially, or intellectual disability. But also a lot of times children do age out of those," said Zablotsky.

Previous questions focusing on the specific prevalence of some less common conditions, like cerebral palsy, have been dropped from the survey effort.

"When we are deciding what questions to include in the survey, if you don't get enough of a sample back, meaning the prevalence is pretty low, you can't then look at any estimates in subgroups because they're unreliable, and our center does not want to release estimates we can't stand behind," said Zablotsky.

Rates of developmental disabilities remained significantly lower in girls, at 5.31%, compared to boys, at 10.76%.

Asian children were least likely to be diagnosed with any developmental disability, at 4.85% of kids in this group. There were no significant differences between Hispanic, Black and White children. […]

• From The Washington Post: “Florida kept disabled kids in institutions. A judge is sending them home.”

[…]In his decision, United States District Court Judge Donald M. Middlebrooks called the difficulties faced by children and parents “heart wrenching,” and wrote that “any family who wants to care for their child at home should be able to do so.”

Children with disabilities typically are eligible for Medicaid services, which can be provided in a home setting or an institution. The state makes decisions about who qualifies and is responsible for paying for the services.

The cost of home health care can be cheaper than institutionalized care, but Florida has increased funding for nursing facility services while reducing funding for home- and community-based services, court documents show.

“The tragedy is that the State of Florida has programs and dedicated resources that could help these families,” Middlebrooks wrote.

The ruling, prompted by a lawsuit filed by the Department of Justice in 2013, could have sweeping implications for thousands of people across the country who need these Medicaid services to live in their homes or communities, a group that includes adults with disabilities and older people, along with disabled children and their families.

Florida is just one of many states across the country where experts say children with disabilities are being unnecessarily institutionalized rather than supported in home settings. Recently, the department has said other states, including Alaska, Maine and Nevada, also are violating the ADA in this way. […]

“In many respects, this ruling is groundbreaking,” said Kristen Clarke, the assistant attorney general for the Civil Rights Division at the U.S. Department of Justice. “Our hope is that this ruling will stand as a model for other states across the country and make clear and explain their obligations under the law.”

[…Father of one of the institutionalized children Conlan] Armour said it wasn’t until he became a witness in the lawsuit that the nursing facility finally gave him training and approved Cayden to go home. In June, Cayden started living with his father, Newton and his 18-month old sister Devi in Miramar, Fla.

Since getting home, he has become more active and is smiling and attempting to talk more, Armour said. His father hopes that this ruling will help other families.

“Whether it’s my child or somebody else’s child, we want change,” Armour said.

[Disability advocates…] believe the ruling could pressure other states to invest more in home and community based services provided through Medicaid. In 2021, 656,000 people around the country were on waiting lists to simply determine whether they qualify for these services. But even after getting approved, many people say they still can’t get this type of at-home nursing care.

[…]Eve Harris, 57, of Plantation, said she was forced to institutionalize her 16-year old grandson, Jeffery Herrion, for whom she is the legal guardian, because home caregivers increasingly didn’t show up during the pandemic. Herrion, who is blind, has cerebral palsy and other complex medical issues requiring him to use a ventilator, wheelchair and feeding pump.

“On paper, we had nursing because it was approved, but we didn’t really have nursing because nobody came,” Harris said.

While living in three different institutions Jeffery suffered from deep bed sores, smelled like urine and feces, and was hospitalized for septic shock after developing a severe skin infection. When he was admitted, Jeffery was taking five medications and breathing on his own. When he finally returned home in April, he required 18 medications and was ventilator dependent, according to both Harris and the judge’s ruling.

Harris still can’t get reliable nursing care, so she left her job and recently quit nursing school to care for Jeffery. She hopes the ruling will help her keep him home.

“He deserves that right, to be with his family members,” she said. “He deserves the right to be loved.”

• From YES! Magazine (opinion): “Children With Complex Medical Needs Belong at Home”

Children belong at home with their families. For children with complex medical needs, this is still true.

I know, because my son was institutionalized in a pediatric subacute facility for most of the first year of his life.

[…]Institutionalization is orders of magnitude more expensive than home care and developmentally harmful for children. It also disrupts the lives of parents and siblings.

[…]In order to bring our son home from the subacute, my husband and I had to demonstrate competence in the medical parts of his care. That part was difficult by any objective measure, but was easy compared to the second requirement. The facility also required us to find home nursing coverage — their initial requirement was that we have 16 hours a day of coverage, including overnight coverage, seven days a week. That requirement was insurmountable, but I spun my wheels for months trying to meet their demand. To bring him home it was my job to find home nurses, a supplier for his breathing machines, a pharmacy that could fill compounded and specialty prescriptions, and figure out all of his insurance and Medi-Cal paperwork. Institutional care provided all those things automatically, home care required me to be the ringmaster of the whole circus.

[…]I can still hear the doctor’s stern intonation when she told us, “You can never fall asleep.” She was solving the problem that she perceived — kids die when their parents fall asleep. But the solution she was providing put the blame and responsibility on the people with the least amount of power in the situation. The assumption was that the system of home care wasn’t going to be functional, and the solution was for parents to simply never sleep.

[…]Spending time in acute care hospitals may be unavoidable for these children when they receive treatments that can’t happen anywhere else. But in many situations, we could do more to allow these children to stay at home, instead of being forced to live in institutions that provide medical care. Our children and families deserve better.

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From AP News: “Families worry over the future of Medicaid caregiver payments that were expanded during the pandemic”

Nathan Hill started receiving $12.75 an hour from a state Medicaid program to help care for his severely disabled son during the pandemic, money he said allowed his family to stop using food stamps.

The program was designed to provide a continuation of care and ease a home health worker shortage that grew worse after COVID-19 hit.

But now, with the COVID-19 public health emergency over, he worries that the extra income will disappear. Some states have already stopped payments while others have yet to make them permanent.

“The success of this during the pandemic was tremendous … for the first time we were able to pay our own way,” said the Meridian, Idaho, resident. “We’re not relying on charities to help us pay our rent and utilities.”

[…] States found that being flexible with caregiver payments helped keep residents served during the pandemic, said Kate McEvoy, executive director of the National Association of Medicaid Directors. She said surveys have shown, too, that people generally like receiving care from family members.

But she also noted that there are concerns both nationally and at a state level about the potential for fraud when paying family members as opposed to an agency that may be subject to more oversight. States also want to make sure that any family caregivers are trained properly and provide quality care.

[…] “You provide better services to someone you love and care about,” said [Holly] Carmichael, whose daughter was born with a rare congenital disease. “They’re part of your life versus a job.”

Carmichael’s [financial services] firm helps people do background checks on potential caregivers and then does payroll, tax withholdings and other paperwork once they are hired.

She said it makes no sense to end payments to family caregivers.

“We have a shortage of caregivers in our country,” Carmichael said. “We need to be pulling every lever we can.”

• From Valley News (New Hampshire): “Summer camps for children with special needs in short supply”

[…] It was a Tuesday morning earlier this summer at Camp Aspire, a free, one-of-a-kind summer camp for children ages 6 to 16 with special needs run by the Special Needs Support Center (SNSC), a White River Junction-based nonprofit organization that assists families in the Upper Valley [of New Hampshire]. The Special Needs Support Center is primarily funded by grants and donations.

Within a week of opening for registration in January, the 14 slots for each week of Camp Aspire filled up, said [Emma] Woloshin, who leads Camp Aspire as part of her role as youth program services coordinator at SNSC. This year, it runs for one week in June and two weeks in August. During July, many Camp Aspire participants attend summer school programs in their home districts.

“It is a huge issue in the community and how fast our camp filled up is a testament to the need,” Woloshin said in a May phone interview. “I wish there was more we could do. We’re definitely trying, but the need is so big.”

[Mom Annie] Hoen noted that [finding a camp for her disabled son] is a stark contrast from finding camp programs for her 11-year-old [abled-bodied] daughter.

“It’s sort of alarming how when you have a child who is disabled or has extra health care needs, how narrow the options are compared with what’s already really kind of a tricky situation, trying to find care for young school-aged kids,” she said.

[…]Ideally, parents said, there would be more programs like Camp Aspire and more funding to pay for one-on-one aides at traditional camp programs. There would also be more programs that work for children with mobility devices and transportation to help campers get where they need to go.

“I would just wish that there were enough camp opportunities that every child who wants to go to camp or every family that has a need for camp in the summer could be included,” Hoen said.

• From the American Academy of Pediatrics (news release): “AAP to Create National Center for System of Services for Children With Special Health Care Needs”

ITASCA, IL — The Health Resources and Services Administration’s Maternal and Child Health Bureau has awarded the American Academy of Pediatrics (AAP) a $7.5 million cooperative agreement to form a new national center for a system of services for children and youth with special health care needs (CYSHCN). The project [started] in July.

With the five-year cooperative agreement, the AAP will establish a National Center Consortium (NCC) with Boston University, Family Voices, and The National Alliance to Advance Adolescent Health. The goal of the collaboration is to provide better care for more children and youth with special health care needs by supporting the implementation of the MCHB Blueprint for Change: Guiding Principles for a System of Services for CYSHCN.

[…]The systemic barriers facing children and youth with special health care needs and their families are long-standing and underscore the need for new approaches to advance the system of services. The AAP and its partners are committed to transforming and improving the systems of services for CYSHCN and their families through the NCC and subsequent national center.

See Medical Motherhood’s story from last year on the Blueprint for Change:

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

On the second Sunday of every month, we feature Where is the Manual for This?!, an editorial cartoon about the medical mom life from Lenore Eklund.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From the Chattanooga Times Free Press (Tennessee): “Department of Children’s Services wrestles with solutions for housing children in state custody”

Three months after the [Tennessee] Department of Children's Services announced it had ended the practice of taking abused and neglected children to state offices overnight, solutions are proving difficult to sustain.

Several faith-based shelters have closed, and some children remain in hospitals for lack of other options.

[…] Children with acute and ongoing needs — those with tracheotomies, in wheelchairs, with developmental disabilities, with mental health needs waiting on a bed in a mental health treatment facility and those with behavioral problems that include violence — are among the most difficult to care for at any point they come into state custody.

DCS has worked with the state's Department of Intellectual and Developmental Disabilities to begin transferring children with high medical needs out of hospitals and into Tennessee Strong Homes, former small residential facilities that had previously housed people transitioning out of state-run institutions that closed down nearly a decade ago.

The children being moved to those facilities are medically fragile with chronic health conditions that may confine them to wheelchairs, require feeding or breathing tubes, may have vision, hearing or communication challenges and are often developmentally disabled, according to Dr. Deborah Lowen, Deputy Commissioner of Child Health for DCS.

The homes are a temporary way station until children can be reunified with families or enter foster care, with DCS footing the bill for room and board while TennCare, the state's Medicaid program, covers the cost of medical care.

Child advocates say they're concerned about moving children to facilities staffed by professional caregivers, instead of families.

"We know children do better in families and communities," said Michele Johnson, executive director of the Tennessee Justice Center, which advocates for children's access to safety net programs, including health care. "It's taking them away from parents and any sense of normalcy ... Who is advocating for these children to grow up in communities?"

In her work trying to connect families with TennCare, Johnson said she often hears about parents' struggles to get in-home services covered for severely ill or disabled children. Some families have been encouraged to turn their children over to DCS to get them the care they need, she said. […]

• From Chalkbeat Chicago: “What education bills did Illinois lawmakers pass? Student mental health help, book ban prohibition, Native American history”

Illinois lawmakers passed a number of education bills at the end of the legislative session that will directly impact what children learn in classrooms across the state and what services they can access. 

Lawmakers dedicated more state funding to early childhood education, pushed for a plan to change how reading is taught, and passed policy aimed at increasing access to mental health services for students. The general assembly also approved a $50.6 billion budget for 2024 that touted an additional $570 million for K-12 education and more funding to help students pay for higher education. Gov. J.B. Pritzker signed the budget into law […June 7….]

[Among the bills passed were:]

Career and Technical Education and dual credit opportunities for students with disabilities: House Bill 3224 will require school districts to provide a student and parent with information about career and technical education opportunities and dual credit courses. If the student is enrolled in a dual credit course, it must be included as part of the student’s transition Individualized Education Program activities. 

Task force on children’s mental health: Senate Bill 0724 will make it easier for families to access mental health services across several of the state departments, including the Illinois State Board of Education. This bill will create the Interagency Children’s Behavioral Health Services Act and require the state to establish a Children’s Behavioral Health Transformation Officer who will lead the state’s effort to work across state agencies to help families get services. This bill unanimously passed both chambers of the general assembly with bipartisan support.[…]

• From the Montreal Gazette (Canada): “Road tripping is a different kind of journey with a disabled child”

At the end of the first day, Liam Défossés spiked a fever. He and his family — dad Yan, mom Emmanuelle and big brother Malou — were driving to Florida from their home in Sorel.

Families who road trip know fevers and sniffles aren’t unusual when you mess up a child’s routine and add excitement and boredom. Most children get over it quickly. For 10-year-old Liam, a fever could be a matter of life or death.

[…] That means researching every hospital along the route and travelling with Liam’s hefty medical file, his food and specialized stroller. The adapted van is packed with 10 cubic feet of equipment, including a BiPAP machine, a suction machine and another that monitors his pulse and oxygen levels  — doubled, because they always travel with backups.

They drove instead of flying because “society isn’t inclusive and doesn’t have many accommodations,” Défossés said. “My son is not a baby, he’s 5 feet tall. You can’t go in the plane with a wheelchair. This is equipment that can cost up to $15,000, and what if when you get off the plane, it’s broken? People have to wear diapers on planes because they don’t have anything to accommodate people who are in wheelchairs. Governments must work to push companies to do more and better.”

[…]Liam has his own ideas about flying. In the spa at home, he floats and can move more easily. The clear next frontier is space, where he knows he can fly. He wants to be the world’s first disabled astronaut.

“He’s the one who has a lot of guts,” Défossés said. “When we have a plan that’s a bit risky, he loves it. Every time we do something he’s not supposed to do, he says, ‘We’re going to make it!’ We follow him.”

[…]Nadine Allard says she sees families like Liam Défossés’s struggle every day, and is discouraged when she hears all the things they need to fight for. Her team in the complex care unit of the Montreal Children’s Hospital follows patients who are medically fragile and who have medical technology at home. They help families navigate the health and social services landscape, which is broken into many different departments and aid organizations.

[…}These programs aren’t adapted for children, she said.

“Everything needs to go in a box. Children don’t go in boxes.”

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Each week, we showcase a picture of real life from the Medical Motherhood community. If you’d like to participate, simply reply to this email. The intent is to show YOUR experience as a medical parent, not your child. What do you want people to see about the #medicalmom life?

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From The Washington Post: “Your child is neurodivergent. Should you tell everyone?

“I never would’ve wanted to be the kid who everyone knew is dyslexic or had ADHD. For our son, we are getting all the outside support we can, but socially we’ve been quiet about it,” said [dad Pavel] Tabutov, who is also neurodiverse. “We would never lead with, ‘Our son has disabilities!’”

After hearing from his friend, Tabutov phoned the hostess [of a recent party his son attended] with an apology. He never mentioned his son’s severe ADHD, yet the incident has caused him to think hard about his position. Neurodiversity has taken on a new value and acceptance — last year, for example, LinkedIn started to offer “dyslexic thinking” as a skill users could add to their profiles.

But talking about it openly can also be problematic, particularly because children need agency over their own lives. And so parents are caught in a particular dilemma: Do they disclose their child’s diagnosis with the hope of educating and enlightening other people; do they wait for their children to decide what to disclose and when; do they keep quiet and continue to navigate sometimes difficult situations?

[…]“In my research, I’ve found that people with neurodivergence are successful when they carefully pick and choose. They decide who it’s safe to tell and who it isn’t,” said Alecia M. Santuzzi, a professor of psychology at Northern Illinois University who studies disabilities in the workplace. It’s called “reputation management” and Santuzzi acknowledges that “you can end up spending energy deciding who to tell, who not to tell and sometimes worrying about it.”

Despite this, experts say the reputation management model can be a healthy option for parents of neurodiverse kids. You want to ensure your child is proud of who they are and embraces their neurodiversity. But you also want to leave room for your child at some point to take over and decide for themselves whom they tell, [special education researcher Joy] Banks says.

[…]Banks says that if we look at the history of disability rights, especially the Individuals with Disability in Education Act (IDEA), it was signed into law only because parents began to protest. “There is still a need for social progress in the area of disability. There’s still a need for equal access and equitable access to resources and services. Parent advocacy can be powerful.”

As for Tabutov, he’s had a change of heart. “I’ve been thinking it over a lot. I don’t want other parents and kids to feel alone in this. My goal is to talk more about our struggles with disability. Not as an excuse, but for the sake of spreading awareness,” he says. “I also want people to recognize all the amazing abilities our son has. He’s smart, he’s capable, and he’s extremely creative. I think people will only be more tolerant and accepting if we’re open and honest.”

• From NEWS CENTER Maine: “Bill would pay Maine parents to care for their medically fragile kids”

The workforce crisis in Maine is taking a toll on families of children with the highest medical needs, who often step in to provide around-the-clock care themselves. 

LD 346, which is awaiting a vote in both the Maine House and Senate, would pay parents to be their kids' caregivers. 

Two bills sponsored by Rep. Jessica Fay, D-Raymond, and Sen. Joseph Baldacci, D-Bangor, considered by lawmakers this session, proposed extending MaineCare coverage to parent caregivers of sick children. Fay's bill, LD 346, was voted unanimously out of the Legislature's health and human services committee. 

[…] With most of her son's care solely on her shoulders, Andrea, a social worker, is unable to work. Under Maine Care rules, the state's version of Medicaid, she also can't get paid to be James' caregiver, but that could change under a proposed bill. 

"That would be such a huge relief if that compensation would be coming in," Andrea said.

The bill would extend MaineCare coverage to parent caregivers under Section 40, which covers home health services. 

Nancy Cronin is the executive director of the Maine Developmental Disabilities Council.

Parents would have to apply to work through a home health care agency because you need a fiscal intermediary, which is a good thing, Cronin explained. Unlike children with behavioral health care needs, Cronin said there is currently no centralized referral system within Maine's Department of Health and Human Services where case managers can work with families of medically fragile kids, which could number more than 100 across the state, to find professional medical help.  

[…]"It's going to be less of a burden for the taxpayers, and the home health industry will be getting more very skilled workers, so it feels like a win-win for everyone with children coming out on top," Andrea explained. […]

• From NJ Spotlight News: “Hospital system to leave NJ Medicaid network, could send special-needs kids scrambling for care”

South Jersey families with children who need highly specialized health care are worried about what will happen after a Delaware-based children’s hospital system with a growing presence here leaves New Jersey’s Medicaid network, a withdrawal that begins Aug. 1.

Nemours Children’s Health alerted New Jersey patients and doctors in late April that it will no longer accept new cases under the state’s Medicaid managed-care plans, which insure almost 97% of the 2.3 million residents in the state- and federally funded program, after that date. Nemours has roughly 11,000 New Jersey patients in managed care and will phase them out of their medical treatments through the end of November, according to hospital officials.

[…]“There are already people talking and feeling the desperation of, ‘I’m not going to be able to get the care my child needs in these already fractured systems,’” said Susan Coll-Guedes, a Galloway resident who has navigated the Medicaid system for years on behalf of her disabled son Alex, now 22. Options for this level of care are limited in New Jersey, she said, and the struggle to find appropriate care often involves travel to Philadelphia, Delaware or New York. Losing Nemours “really limits the lives of these children,” she said.

[…]On Sunday, Sarah Kalis launched a Change.org petition begging Nemours to reconsider its decision to cut care, which had gathered nearly 500 signatures by Wednesday evening. Kalis noted Nemours was founded with funding from Delaware industrialist Alfred I. du Pont, to care for crippled children, and said this decision goes against that mission. “New Jersey children will suffer. While Nemours has said they are committed to their continuation of care to New Jersey’s children, their actions are leaving established New Jersey patients out to dry without an appropriate solution,” she wrote in the petition.

[…]While Nemours said it is still open to discussion, [Pauline] Corso, [senior vice president and chief operating officer for Nemours facilities in the Delaware Valley] warned that families with special-needs children covered by Medicaid could face a challenging road ahead. Patients may need to “bypass our sites and may have to travel much, much further to receive the care and that care will probably be months away,” given delays caused by a growing shortage of physicians, especially those who accept Medicaid, which typically pays less than commercial insurance plans. “Some of these families, their children are seeing 12 to 13 specialists that are all coordinated within one health system, on one electronic medical record. Now they may have to go out and find 13 separate specialists.”

While discussions continue around Nemours’ place in New Jersey Medicaid, hospital leaders are backing legislation Corso said would serve as a starting point for a more holistic fix, and she urged parents to contact lawmakers to support the measure. A bill introduced in recent weeks would set rates for out-of-state children’s specialty hospitals at 125% of the Medicaid rate in their “home” state, which is generally higher than the payment structure in New Jersey. […]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Fox 12 News (Oregon): “Parents of disabled children rally in Salem for caregiver funding bill”

On Thursday, parents of disabled children across the state gathered at the State Capitol in Salem to urge lawmakers to advance policies and funding for parents to be paid caregivers to their extremely disabled children.

“It is more than just a bill to us,” said Calli Ross. “This is truly life or death for our kids.”

It comes after hearing that Senate Bill 91, which would have made permanent a temporary program allowing parents to be paid caregivers to their disabled children permanent, would not be advancing this legislative session. Now, they are asking lawmakers to add the funding and policies to the end of session reconciliation bill along with a budget note to allow ODHS to move forward with applying for the waiver needed to establish a permanent program. […]

The temporary program started during the pandemic due to a shortage of caregivers across the country and to curb the spread of COVID-19 to vulnerable children. Several states have since made the program permanent. Ross and others say it’s been life changing for them and their kids.

[…]“We are begging legislators to listen,” said Ross. “This is way more than just politics to us. This is our children’s lives. We need something put in this session so we can resume this program before children fall off the cliff. We don’t have much time to continue on without support and right now that Oregon doesn’t want disabled children in the state. I’d like to see that change.”

Full disclosure: Calli and I work on this issue together and my kids and I were at this public demonstration.

• From WUSF Public Media (Florida): “Kids with disabilities housed in Florida nursing homes could return to families”

Children with complex disabilities who for years have been housed in nursing homes in South Florida could be able to return to live with their families as a result of a civil rights lawsuit.

The suit, filed by the Justice Department against Florida health regulators a decade ago, finally went to trial last month. It argues that the practice of institutionalizing medically fragile children in homes for the elderly violates the Americans with Disabilities Act, and seeks to push the state to create conditions which it argues would allow for families to be able to look after them at home.

[…]The trial raised concerns about Florida’s lack of private-duty nursing. That leaves many parents without an option to provide adequate in-home care, forcing them to keep their kids institutionalized.

“In one of the court files a family finally was able to get their kid out of a nursing home and the day that he was leaving, they had a goodbye party. The family got out of the home into the parking lot and they got a call saying the nurse quit before they even got the kid home,” [Carol Marbin Miller, an investigative reporter at the Miami Herald] said.

“And that is the biggest problem these families face — [it] is getting money for and then accessing in-home nursing care.”

• From The 74: “Due Process, Undue Delays: Families Trapped in NYC’s Decades-Long Special Ed Bottleneck”

[…]Special education is notoriously fraught in many school systems, but the magnitude of the problem in the nation’s largest district, New York City, boggles. The department is supposed to educate nearly a quarter of a million children with disabilities — a population that in 2019 was larger than the entire student body of all but seven U.S. school districts. In 2020-21, nearly 21% of New York City’s roughly 1 million schoolchildren received special education services, compared to a national average of 15%. 

By all accounts, the Department of Education every year fails to meet even basic obligations to tens of thousands of children with disabilities. Stretching back two decades, numerous lawsuits and state audits have flagged the same problems over and over. Just this week, it was reported that 9,800 children — or close to 37% of NYC preschoolers with disabilities — did not receive all of their required services, and in March, it was revealed that 64% of bilingual special education students did not.

Because very little has changed, parents are forced — typically after years of neglect — to seek out everything from specialized instruction to intensive therapies on their own. They and their service providers are entitled to reimbursement.

[…]The “next steps” identified by the special master hint at how far from resolution those basic problems may be. The department, its report to the court suggests, should form a steering committee and appoint people to oversee “the areas of people, process and technology.”

Two pages of acronyms for various parts of the DOE bureaucracy precede 75 recommendations ranging from figuring out how to put accounts payable online so outside service providers can get paid to streamlining onerous civil service rules that complicate hiring enough people to handle the payments. 

The document is in fact so complicated that Advocates for Children, which represents the plaintiffs in the 20-year-old case, translated those recommendations it agrees with into plain English and put them onto a simple chart along with suggested timelines for implementation. 

The judge must now decide which recommendations to adopt, and how to hold the department accountable for progress. There is no deadline for that decision. […]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Each week, we showcase a picture of real life from the Medical Motherhood community. If you’d like to participate, simply reply to this email. The intent is to show YOUR experience as a medical parent, not your child. What do you want people to know about the #medicalmom life?

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From The 74: “They Stood Up to NYC Schools for Their Disabled Child. Then Child Protective Services Arrived”

When their 7-year-old son, Tristan, who is autistic and nonverbal, arrived home from school with bruises and a lump on his head, Bronx parents Luis and Michelle Diaz began to worry.

They asked the school to look into the 2021 incident and requested a new paraeducator for their child. The classroom aide hadn’t mentioned the injury, despite messaging them throughout the day, the parents said, erasing their trust in her.

But the family’s search for answers and solutions brought them head-on into a problem they hadn’t anticipated: The school pointed the finger back at the Diaz parents, alleging neglect and inadequate supervision of their child. Soon, a caseworker with the Administration for Children’s Sevices, known as ACS, the New York City agency responsible for investigating suspected child abuse, showed up at their door.

“We were just trying to advocate for our son and find out what happened like any parent would,” Michelle Diaz said. “This is where the retaliation started.”

The school’s response reveals a startling pattern: Across the nation’s largest district, parents of students with disabilities who speak up on behalf of their children say they are being charged with allegations of child abuse or neglect — a tactic advocates say schools use to intimidate parents and coerce them into dropping their concerns.

Though it’s not clear how many reports may be retaliatory, New York City educators have made more than 3,500 calls alleging suspected abuse or neglect of children with disabilities over the past two school years, according to data obtained by The 74 through public records requests. Each one triggers an intrusive process that, at its most dire, can lead to the removal of a child from parents’ custody. Yet caseworkers found evidence of parental wrongdoing in only 16% of cases, and fewer still go on to withstand judges’ scrutiny.

In more than a dozen interviews, parents, advocates and researchers recounted what they described as a common practice of threats leveraged against families of some of the most vulnerable students in the city’s school system.

“Those are intimidation tactics that they do to parents,” said Rima Izquierdo, a Bronx parent leader who supports families of special needs children across the borough.

“This is a trend. … All the stories sound the same.”

Neither the Department of Education nor ACS responded to parents’ claims of retaliation when asked in an email. DOE spokesperson Nicole Brownstein expressed her agency’s commitment to “the safety and wellbeing of our students.” 

[…] In 2022, the federal Office of Civil Rights received 1,708 retaliation complaints from families of students with disabilities. Numerous parent blogs describe anecdotal cases where schools have used child protective services reports or truancy charges to punish families advocating for their special education children. And the American Bar Association published a 2019 brief on the legal rights of parents of special education students who find themselves facing these allegations.

Previous reporting has revealed cases where schools weaponize the threat of calling child protective services against parents who aggravate educators or administrators. But families of special education students say they are at particular risk for the unlawful treatment.

It’s “a very common occurrence,” said Anna Arons, a New York University law professor, that when families have “substantial back-and-forth with the school about the appropriate services for their child” it can result in educators calling the state child abuse hotline.

School staff are one of several professions legally obligated to report suspected child abuse and neglect. But in New York City and nationwide, educators make a higher share of unsubstantiated calls than any other mandatory reporter category — meaning families often become needlessly ensnared in a process they describe as invasive and traumatic. 

[…]An ACS spokesperson said in an email that the agency is working with educators and school leadership to reduce the number of families coming into unnecessary contact with the child welfare system, training educators to instead connect struggling families with resources like food or rent support. The agency runs several community centers across the city that offer free resources to families, such as clothing, food and diapers.

“We will continue to work with stakeholders, like NYC Public Schools, to help reduce unnecessary reports so that we can better focus our child protection resources on those who really need it,” the spokesperson said. […]

• From KFF Health News via Clinical Advisor: “As Medicaid Purge Begins, ‘Staggering Numbers’ of Americans Lose Coverage in 2023”

More than 600,000 Americans have lost Medicaid coverage since pandemic protections ended on April 1, 2023. A KFF Health News analysis of state data shows the vast majority were removed from state rolls for not completing paperwork.

Under normal circumstances, states review their Medicaid enrollment lists regularly to ensure every recipient qualifies for coverage. But because of a nationwide pause in those reviews during the pandemic, the health insurance program for low-income and disabled Americans kept people covered even if they no longer qualified.

Now, in what’s known as the Medicaid unwinding, states are combing through rolls and deciding who stays and who goes. People who are no longer eligible or don’t complete paperwork in time will be dropped.

[…]Tens of thousands of children are losing coverage, as researchers have warned, even though some may still qualify for Medicaid or CHIP. In its first month of reviews, South Dakota ended coverage for 10% of all Medicaid and CHIP enrollees in the state. More than half of them were children. In Arkansas, about 40% were children.

Many parents don’t know that limits on household income are significantly higher for children than adults. Parents should fill out renewal forms even if they don’t qualify themselves, said Joan Alker, executive director of the Georgetown University Center for Children and Families.

New Hampshire has moved most families with children to the end of the review process. Lipman said his biggest worry is that a child will end up uninsured. Florida also planned to push children with serious health conditions and other vulnerable groups to the end of the review line. But according to Miriam Harmatz, advocacy director and founder of the Florida Health Justice Project, state officials sent cancellation letters to several clients with disabled children who probably still qualify. She’s helping those families appeal. […]

• From The Guardian: “Australia’s kinship carers desperate for support as numbers of children in out-of-home care grow”

[…] Kinship and foster carers are facing increasing financial pressures amid the cost of living crisis and only marginal rises in government allowances. Advocates say the exit rates mean more children are placed in institutional care homes, considered a last resort.

Since 2019, Jane has cared full-time for her two grandchildren, aged eight and four, after she spent two decades as a foster carer. Her grandchildren are the 64th and 65th children she has opened her home to.

“I wanted to give children a better chance than the one I’d had. I wanted to give them a safe haven,” she says.

Jane says despite begging for monetary support from the Victorian government, she was only provided with one single bed, despite caring for two children. She says support to nurture the children’s First Nations culture was limited to a pencil case printed with Indigenous artwork.

Compared to her time as a foster carer, Jane says being a kinship carer is akin to being “the poor cousins” of the protection system.

[…] The CEO of Victoria’s foster care association, Samantha Hauge, says current funding is inadequate and put carers in an impossible situation.

“Either they pay for services out of their own pocket (with the hope that they might be reimbursed at some stage in the future) or let the children go without,” she says.

The association praised the state’s budget providing a one-off $650 supplementary payment for each child for all foster and kinship carer households, but says there is no funding to increase the care allowance.

Kinship Carers Victoria says the budget initiatives would not allow carers to “lift themselves out of poverty.” […]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

I’ve been enjoying seeing your pictures portraying your experiences with medical motherhood. Some are hard and heartbreaking, while others are funny or beautiful, but all of them show the fierce love and devotion you have for your kids. Send in your photos to Shasta@MedicalMotherhood.com.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Disability Scoop: “Medicaid, Disability Programs Could Face Cuts In Debt Ceiling Negotiations”

The future of Medicaid and other programs critical to people with disabilities are on the line amid a Washington standoff over the nation’s debt ceiling, advocates say.

President Joe Biden and leaders in Congress are working to reach a deal to avert a first-ever government default. Without an agreement, Treasury Secretary Janet Yellen has warned that the U.S. could hit what’s known as the debt ceiling as soon as June 1.

Last month, the Republican-led U.S. House of Representatives passed a bill to raise the country’s debt limit — the amount of money that the government is permitted to borrow. The bill included work requirements for Medicaid beneficiaries and significant cuts to domestic spending, which would affect everything from education to employment, housing and other programs for people with disabilities.

The measure was seen as a nonstarter for Democrats, who control the Senate, but disability advocates say the bill shows what’s at risk in the negotiations to avert a fiscal crisis.

“Given the consequences to the economy, there is enormous pressure to reach an agreement that can pass the House and the Senate,” said David Goldfarb, director of policy at The Arc of the United States. “In addition to Medicaid cuts, I am very concerned about caps to discretionary spending which will hurt people with disabilities. Caps to discretionary spending could mean less funding for accessible housing, less funding for special education, a worsening Social Security Administration customer service crisis, and so much more.”

Advocates have been particularly alarmed by Republican efforts to impose work requirements on many Medicaid beneficiaries. Even with exemptions for people with disabilities and their parents and caregivers, they say that additional red tape would make it likely that individuals will lose coverage, which could include access to home and community-based services. […]

• From KCCI (8) in Iowa: “'These kids need a voice': Parents worry about budget cuts to agencies helping special needs kids”

[…]Iowa has nine [Area Education Agencies or] AEAs that provide special education services to public and private school students across the state. The agencies also help families who have infants and toddlers with special needs.

State lawmakers agreed months ago to increase public education funding by 3%, which will boost how much state aid school districts and AEAs get for each student enrolled in public school.

Despite that increase, Republican lawmakers also agreed to reduce state funding to the agencies by nearly $30 million next year. They made that change while finalizing the state budget during the last week of the session.

It is the largest of ongoing budget cuts that AEAs have faced for decades.

Lawmakers are required each year to cut AEA funding by roughly $7.5 million. Jon Sheldahl, Chief Administrator for the Heartland Area Education Agency, says lawmakers have also approved an additional $15 million cut for the past several years.

But Sheldahl says agencies were shocked when Republican lawmakers approved a $22 million budget cut this year instead.

"We were fully expecting a $15 million cut at the end of this session. We get one every year," Sheldahl said. "But we weren't expecting the extra $5 million [cut]...We're getting less than we budgeted for, and we're getting less-- to budget for staff going forward."

[…]Sheldahl says students who get direct services, including speech, physical or occupational therapy, could get them less often.

"It'll impact our ability to add the staff that we need to keep up with the growing population," Sheldahl said. "It will decrease the frequency with which many students receive services, how often [and] for how long."

Parents of children with special needs worry about what a future with fewer services would look like. […]

• From the Associated Press via The Hill: “Double amputee Everest climber pledges to work for benefit of people with disabilities”

The first double above-the-knee amputee to climb Mount Everest returned from the mountain on Tuesday pledging to dedicate the rest of his life to helping people with disabilities.

Hari Budha Magar, a former Gurkha soldier who lives in Britain, reached the peak of the world's highest mountain last week.

“My main aim for the rest of my lifetime is going to be working to bring awareness about disability,” Magar said on his return to Kathmandu, Nepal's capital.

As a soldier in a Gurkha regiment in the British army, Magar lost both his legs in Afghanistan when he accidently stepped on an improvised explosive device in 2010.

[…]“If a double above-knee amputee can climb Everest, you can climb whatever mountain you face, as long as you are disciplined, work hard and put everything into it,” he said.

Magar was born in a remote mountain village in Nepal and later was recruited by the British army as a Gurkha. He now lives with his family in Canterbury, England. […]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

As an aside: Thank you so much for still being a subscriber. I’m kind of amazed that you all stuck around! I would love to feature your photos in upcoming editions, so please feel free to reply to this email with one or two so we can continue to show the world what medical parenthood is really like. Thanks!

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From The 19th: “Caregiving costs women nearly $300,000 in lost pay over their lifetimes, Department of Labor finds”

The cost of caregiving on women’s lifetime earnings now has a number: $295,000. 

A new report released Thursday by the Department of Labor projects how caregiving for children and parents affects women over the course of their careers, eating into their retirement savings and costing them wages and promotions.

The research projected the lifetime employment costs brought on by unpaid family care for women born between 1981 and 1985, now entering their early 40s, who have already taken on care for their children and will likely care for their parents, parents-in-law and spouses. The estimate is adjusted for inflation and is in 2021 dollars. 

[…]The numbers are still very likely an undercount, the Women’s Bureau said. Because of limitations in the data, the research excludes care for adults with disabilities and caregiving costs unrelated to employment, such as the cost of day care and the emotional impact of caregiving. 

Of the $295,000 figure, 80 percent is attributed to lost earnings due to caregiving and 20 percent is lost retirement income as a result of lower wages. The majority of the loss in wages comes from caring for children. Care for other adults totals only 15 percent of the costs, researchers found, because women are less likely to reduce their employment to provide it. 

[…]The impacts are particularly outsized for Latinas, who are more likely to have more children and work in low-paying jobs with very limited flexibility, the report found. Less pay also means there are few child care options — the average annual cost of child care in the United States is nearly $11,000, which is out of reach for many Latinas. Without access to care, Latinas see their lifetime earnings slashed by 19 percent, the most of any racial group. That figure is 8 percent for Black mothers, 15 percent for White mothers and 14 percent for other groups [….]

• From The New Yorker: “The Parents Who Fight the City for a ‘Free Appropriate Public Education’”

[…]New York City’s public-school system has roughly a million students; about a hundred and eighty-one thousand of them have I.E.P.s, and there are thousands of Carter cases pending at any time. […Carter cases refer to lawsuits in which the family sues a public school district for tuition to a private school that can meet their child’s educational needs…] Because federal law requires that I.E.P.s be reviewed annually, families typically must file due-process complaints for tuition reimbursement every school year, which puts additional strain on the system. If, say, a mother prevails in arguing that her autistic first grader is appropriately placed at a private elementary school, she may still have to retain an attorney, front tuition fees, and await an impartial hearing for second, third, fourth, and fifth grade.

Lately, the number of New York City’s Carter cases has soared. Last fiscal year, the [Department of Education or] D.O.E. spent nine hundred and eighteen million dollars related to due-process claims, which, in inflation-adjusted dollars, was more than double what it spent in 2015 and more than four times what it spent in 2010. (Roughly one in every forty dollars that the D.O.E. spends is related to due-process claims.) The increase was driven by the coronavirus pandemic and the prolonged school shutdowns that followed—many special-education students regressed while in isolation and could not meaningfully access support services through a Zoom screen. Meanwhile, the crisis of covid-19-driven teacher burnout, which caused high rates of turnover and attrition, hit the special-education field hardest.

[…]During her stint as a cosplay attorney, and in her years of teaching, Emily told me that she has seen many violations of federal education standards that had nothing to do with lack of competence or good intentions but, rather, a lack of resources. The principals, psychologists, teachers, and social workers who were tasked with conceiving an I.E.P. did not have the funding, the training, the classroom space, or the credentialled colleagues to put the document into action. But those limitations are not a mitigating factor under I.D.E.A. “It is against the law to restrict your offerings based on what you have available in your school building—but, realistically, a lot of schools do that,” Emily said.

Many—perhaps most—due-process claims circle around this fiscal void. Rebecca Shore, of Advocates for Children, told me, “It shouldn’t be a matter of, ‘Well, we have no providers, so we can’t provide this service.’ It should be, ‘There are no providers—what are the reasons for that, and how do we come up with a solution?’ ” She went on, “The D.O.E. needs to take whatever steps are necessary to make these into jobs that people actually want to do.” In 2021, a salaried paraprofessional who shadowed a child with physical or behavioral challenges in school, for example, made between twenty-eight and forty-four thousand dollars per year. When support services such as speech or occupational therapy are not available at school, the D.O.E. offers vouchers that parents can use for approved private providers, but most therapists don’t accept them, owing to the low rates of compensation and long delays in receiving the money. “So one very simple solution is for the D.O.E. to pay more and pay quicker,” Shore said.

[…]“One of the most frustrating things is that when people talk about inclusive education, they don’t mean kids like Travis,” [Travis’ father] Dan told me at the playground, as we followed the kids toward the basketball courts. At one point, the family was deep into the application process at a private school where, Dan said, “all over their Web site is ‘inclusive, all kids.’ They said, ‘We would love to be part of Travis’s story.’ And then they see the I.E.P. and they learn all the details, and they’re, like, ‘Well, actually, we’re not set up to deal with a kid like this.’ ” The options, Dan said, “are either very lockdown-prison-feeling-type things, or a place where you’re taking a real risk, because the school will not deal with aggressive behavior.”[…]

• From NorthJersey.com: “Left behind in school evacuations, students with disabilities demand more protection in NJ”

With mass shootings on the rise nationwide, local school officials are confronting a unique challenge for one of their most vulnerable populations: how to ensure the safety of students with disabilities.

In New Jersey, that has prompted new legislation ordering districts to take the needs of students into account, amid tales of children left at the top of staircases or told to hide on their own.

Willingboro's Kevin Nunez, whose cerebral palsy necessitates a wheelchair, is 35. But he still remembers the fear of waiting by himself two decades ago while his fellow Bridgewater-Raritan Regional High School students evacuated without him during shooter drills.

“When I was in school, my evacuation plan was to wheel myself into the ladies’ bathroom, pull into the handicapped stall, which was the only place big enough for my power wheelchair, and turn around with my back to the door," Nunez, the vice chairman of the state's Council on Developmental Disabilities, recalled in an interview.

"They told me that if a shooter came in, the bullets would have to go through the metal door and my wheelchair before they hit me. I was told to wait there, alone, in the dark."

[…]the New Jersey Council on Developmental Disabilities adopted a white paper outlining emergency preparedness concerns that came out of a summit it hosted in 2017. Educators, school administrators, advocates and emergency personnel came together to discuss how to develop more inclusive emergency plans.

The council recommended that students with disabilities participate in emergency plans and drills tailored to their needs. Parents, educators and first responders should collaborate with disability advocates, and the plans should be evaluated regularly. Training should include all school staff across disciplines.

A bill in Trenton, S2057, would require districts to amend emergency plans to include students with disabilities in monthly fire and security drills. It would also mandate staff training on accommodating disabilities. A law enforcement officer would have to be present for at least one drill per school year to assess the procedures.

The legislation would also require emergency planning for individual students with disabilities to be documented in their health care plans, 504 plans and Individualized Education Plans.

The bill has passed the state Assembly and is scheduled for a vote in the state Senate on May 22, according to the office of state Sen. Shirley Turner, who co-sponsored the legislation with fellow Democratic state Sen. Linda Greenstein. […]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Lack of sleep is definitely my Kryptonite! What’s yours?

The second Sunday of every month Medical Motherhood publishes Where Is the Manual for This?!, an editorial cartoon by Lenore Eklund.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From the Miami Herald: “‘Just another baby for them.’ Parents, feds fight for kids stuck in Florida nursing homes” (If you decide to click through, be aware that the article contains numerous graphic descriptions of abuse and poor living conditions for disabled children.)

Court records in a federal lawsuit set for trial on Monday before U.S. District Judge Donald M. Middlebrooks in West Palm Beach […assert…] that Florida’s reliance on […] institutions for the care of fragile children is a violation of their civil rights and an affront to federal laws that require the housing and treatment of disabled people in home-like settings whenever possible.

[…]

Mary L. Ehlenbach, the medical director of the Pediatric Complex Care Program at the University of Wisconsin in Madison, wrote in a report that parents often are held to a higher standard than the institutions that are being paid hundreds of thousands per year. Some parents, for example, said nursing home administrators told them their children couldn’t go home until the family had a large private bedroom for the disabled child. At the nursing home, though, the children sometimes live three or four to a room.

“Parents don’t want their children exported to institutions 300 or 400 miles away to be warehoused,” said Dr. Jeffrey Goldhagen, the division chief of community and societal pediatrics at the University of Florida College of Medicine in Jacksonville.

Brittany Hayes, the mother of a 5-year-old boy who has spent his entire life in nursing homes, told the Herald: “Most of the time he’s in a crib. Every time I Facetime him, he’s laying down in the crib.” “If they’d just give me my child, I would make sure he meets his goals,” Hayes said. “He’s just another baby to them.” Responding to “multiple complaints” about the institutionalization of disabled children, the Justice Department’s civil rights division sued Florida health administrators a decade ago to put an end to such practices, saying they violate federal laws forbidding the institutionalization of disabled people, especially children.

[…]The state insists that the federal government should mind its own business and allow Florida health regulators to provide care to disabled children as they see fit. The lawsuit, state lawyers say, cuts to the very “heart of its sovereignty: the weighing of competing healthcare policies.”

[…]Parents told experts that nursing homes made it nearly impossible for families to bring their children home, describing discharge planning as an endless series of moving goal posts. One parent expressed immense frustration at efforts to bring their child home from a nursing facility. “No matter who I scream at, nothing gets done,” the parent told Ehlenbach.

Wrote Ehlenbach in her report: “Several families described feeling desperate to be reunited with their children. One family member poignantly shared, ‘Pretty much short of robbing a bank, we’ll do what we can to bring him home’.”

• From The Washington Post: “‘Medical moms’ share their kids’ illnesses with millions. At what cost?”

When Bella was born in 2013, she didn’t leave the hospital for the first two years of her life because of a combination of a rare form of dwarfism, bowel disease and autoimmune disease. Kyla Thomson, Bella’s mom, started sharing online as a way to update her family members.

As Bella grew and changed, so did the internet. Kyla moved her updates from blogs to Facebook to Instagram, eventually landing on TikTok, where she has amassed 5.7 million followers. Fans watch Bella and Kyla dance and joke and follow Bella’s hospital stays, ambulance rides and nightly intravenous medication rituals.

Thomson’s account is one of the biggest in the world of #medicalmoms, a corner of TikTok where mothers of disabled and chronically ill children share their parenthood journeys. Among the posted videos: a child with cystic fibrosis struggling to breathe, a premature baby getting their tracheotomy changed, and a mother dancing to a trending song while words pop up explaining her child’s disability.

The parents behind these accounts say they’re sharing the content to raise awareness about the realities of disability, fight social stigma and foster a community for others in their situation. But as scrutiny of influencer parents sharpens, some creators are walking back old decisions to share their kids’ faces and deleting old videos. Advocates are introducing legislation to protect influencer kids and pushing against the monetization of child-focused content. And critics say issues of child privacy, consent and autonomy are especially pronounced when publicizing medical conditions.

[…] Annalise Caron, a clinical psychologist who runs an initiative dedicated to parenting, understands the instinct parents have to seek community.

“It can be a very lonely experience to be a parent of a chronically ill child,” Caron said. “Parents find support online.”

But two questions arise, Caron said, that are worth asking before sharing photos or videos of your child. First: what is the goal in sharing this? And second: how does my child feel now and how will they feel in the future?

“We could ask someone when they’re six or eight, ‘do you mind if I talk about your personal medical information?’ They might say, sure,” Caron said. “But maybe when they’re 16 and they find out their parents have a huge following off them, they may not be as comfortable with that.” Even if sharing a child’s experience helps build community, Caron said, the child’s privacy and personal feelings should always be considered first.

• From the Chicago Tribune (opinion): “Lauren Rivera: Are principals steering disabled children away from their schools?”

Many parents want to find schools where their children will thrive. But for parents of children with disabilities, the stakes of finding a good school cannot be higher.

Parents’ concerns range from whether a school will have the right services and supports to help their child advance academically, to whether the school can keep their child physically safe. In some cases, having that information, which is not publicly accessible and often obtained through directly contacting school officials or participating in school tours, can be lifesaving. But discrimination can prevent families from gaining such crucial knowledge.

I faced this situation while researching a possible move from Chicago to New York. A major part of the decision was finding appropriate schooling options for our able-bodied son and physically disabled daughter. Scheduling tours of schools in both cities for my son was easy but proved tricky for my daughter. When I mentioned her disabilities in email or phone requests, far fewer schools replied to me. When they did, they often declined a tour, telling me that they did not give tours as policy (even when I knew other parents that had successfully toured) or would provide a tour only after I purchased a home in their catchment zone.

One administrator even told me over the phone, “You can come tour our program if you look through the eyes of your (able-bodied) son. But not if you look through the eyes of your (disabled) daughter.”

[…]We conducted an audit study of more than 20,000 K-12 public schools in four states. We emailed school principals, telling them that we were moving to the area and researching schools for our child. We asked if we could set up a school tour. Half of the emails indicated that the child had a disability, signaled with an individualized education plan (IEP); the other half did not. Because disability intersects with other identities, we also varied the perceived gender of the child and the race of the parent.

[…] We found that principals were indeed significantly less likely to grant tour requests when they believed the child was disabled versus nondisabled, an effect that was even larger when they believed the parent was Black. Most principals did not outright say no. They simply chose not to respond. We conducted a follow-up experiment of 578 principals to understand factors motivating this behavior. It turns out principals viewed disabled students as imposing a greater financial and temporal burden on their schools. Potentially to preserve resources, they engaged in a subtle form of exclusion: strategic avoidance.

[…] What can policymakers do to create a more inclusive landscape that discourages local school officials from isolating, removing, or ignoring disabled students or their families? Fully funding special education at 40% is an important start.

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

This week at the White House Correspondent’s Dinner, comedian Roy Wood, Jr., had an important message poking out of his hilarious set: Local sources of news are dying and, without them, we are missing community storytellers and watchdogs all over the country.

As a former community journalist, I am painfully aware of this reality and of how deeply important local news sources are. When I started Medical Motherhood, I imagined it could be like a small newspaper for my community. Even if you and I aren’t connected by geography, we are connected by common experiences and that makes us a community with a need for vital information and common stories.

As I have approached the end of Year Two of this endeavor, I’ve taken stock of what I set out to do and what we have accomplished together. Readers, you have proven that a news source like this is necessary. Together we have grappled with difficult personal experiences and we have pushed for radical policy change. You have made “medical mama” and “medical motherhood” terms that I now see all over the interwebs. You have solidified and validated my experience, and I hope that I have given you the same gift.

My original concept was that Medical Motherhood would itself sustain me as a writer and reporter: A little one-woman newspaper that worked just for her readers. That dream hasn’t penciled out yet, but fortunately I have discovered that mainstream publications are interested in stories that are important to this community. And that takes time I can’t devote to providing you all with original and unique content for free each week.

So I guess in all these musings about reporting, I’ve buried the lede. Here it is: Medical Motherhood will now be a collection of news briefs with occasional cross-posted content from my freelance work. I hope you continue to return each week for the collection of news from around the world that focuses on new policies, studies and other news relevant to those raising disabled kids.

In my freelance work, which will be posted here too, I will also continue to report on stories I think need to be told, especially those that are unique to this community and not being reported on otherwise. With the advantage of this extra time, those stories will be deeper and (hopefully) more impactful.

It’s probably no coincidence that I launched Medical Motherhood a couple months after our family qualified for Oregon’s temporary paid parent caregiver program. It is probably also no coincidence that I am feeling more pinched for time now that that program is ending May 11. For those who qualified for the temporary program, being paid for our caregiving labor the last couple of years allowed us to give back to our community in ways that will be a lot more difficult when that option goes away.

I’m still here for you, readers. Though our children’s diagnoses may be different, we remain bonded together in our common struggles with the very systems designed to help them. I also see paid parent caregiver programs becoming more popular across the nation and being on the cutting edge of that conversation has been very exciting. With your support, shares and subscriptions, we have changed the conversation on a number of topics.

This always was and always will be a labor of love. Every newsletter and every podcast episode is a wish on the wind that this information it finds its people and is helpful to my community.

I hope this new format continues to find you and that the coming episodes remain helpful.

Thank you for your continued support and for being a part of Medical Motherhood.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From the Seattle Times: “WA lawmakers increase special education funding, but gap still remains”

As state lawmakers went dark for budget negotiations last month, there was hope they’d emerge with a solution to fully fund special education. 

But the new state budget signals they’re still not done talking about it. 

Programs for disabled kids in Washington schools got a $365 million boost over the next two years, bringing the total budget for special education up to $4.1 billion. It’s a significant increase — 9% — in a session where concerns over an economic downturn shaded many decisions, but the extra funds meet only half of the gap outlined by state education officials.

Lawmakers also kept in place a major driver of that funding gap — a policy that caps funding to school districts if they enroll more than a certain percentage of disabled children.  

Among disability rights advocates, one of the most-watched K-12 proposals this session called for removing this cap entirely. Instead, lawmakers increased the percentage from 13.5% to 15%. Advocates warn that this cap opens the state to litigation: The state has a constitutional promise to cover basic education costs for all students. About 95 school districts are above the cap, including the Olympia and Spokane school districts.

[…]One big change did come out of the session: lawmakers expanded the state’s oversight over nonpublic agencies, which are private schools that enroll students with complex disabilities. The Seattle Times and ProPublica surfaced complaints of abuse toward students at these schools last year that went unaddressed by state officials. 

The state will also commission an audit of the process used to determine whether students qualify for special education services. […]

• From Disability Scoop: “Feds Want To Shake Up Rules For Home And Community-Based Services”

Federal Medicaid officials are proposing major changes aimed at improving access to home and community-based services for people with disabilities and bolstering the direct support professional workforce.

The Centers for Medicare & Medicaid Services issued two proposed rules in the Federal Register this week that the agency said would “establish historic national standards for access to care regardless of whether that care is provided through managed care plans or directly by states through fee-for-service.”

The effort includes key changes to the rules governing home and community-based services through what’s being called the Ensuring Access to Medicaid Services regulation, or the Access Rule.

Under the proposal, states would be required to reassess the needs of each individual receiving home and community-based services annually and revise service plans accordingly. In addition, the rule would require that at least 80% of what Medicaid pays for personal care, homemaker and home health aide services goes directly toward compensation for the person providing the service rather than for administrative purposes or profit. And, states would need to publish the average hourly rate paid to direct care workers.

The 130-page regulation also includes new mandates for states to report on how long their waiting lists are, whether people can access services once they get a waiver and various quality measures in their home and community-based services programs. […]

• From iNews (opinion): “Child trust funds: Disabled teenagers want their cash but a government empathy gap stands in the way”

(United Kingdom): If your child was born between 2002 and 2011, the Government gave you a cheque – £250 or more – which you put in a Child Trust Fund account to save until they reached 18. In the months before the big day, you receive a letter from your Child Trust Fund provider: could it have your teenager’s bank details so the money can be transferred?

Except, if your child is learning disabled, this may not be possible. If your child lacks the mental capacity to manage their finances they can’t open an account, so their money is stuck – unable to be paid out because there is nowhere to put it. Why it can’t be sent to a parent’s bank account is because of the Mental Capacity Act, which came into force in 2005.

Introduced to protect the finances and decisions of vulnerable people, it means that if you wish to access the money found in a savings product the Government forced you to take out for your child, you must go to court.

This is a costly and laborious process [… that the Government considers reasonable…] even though you are not a family with ordinary, run-of-the mill stresses. One woman we interviewed in this position, Elizabeth Stanley, explains she doesn’t have the bandwidth to go to court because she spends 93 hours a week caring for her daughter, who uses a wheelchair and has regular seizures.

[…]Let’s hope [the new Ministry of Justice chief] reconsiders and addresses this glaring empathy gap. If he spent time with these teenagers and their parents, he would surely conclude that obliging them to go to court, or putting them at risk of losing their savings, cannot be the answer.

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

Early on, I would try to start seeds and, eventually, they died. 

I would put them in neat little rows, give them fertilizer and water them. I would do everything by the book, everything I am supposed to do. But for some reason, I was rarely successful. My corn never grew past my knee, my basil yellowed and wilted, my lettuce seedlings rotted. 

My son, on the other hand…. Jasper* finds old seed packets and sprinkles them in patches, not rows. He doesn’t pay attention to the weather. He forgets to water for weeks. He puts tomato cages around peas and leaves tomatoes to sprawl out. He grabs a bulb of garlic from the kitchen and shoves it in the ground. 

He makes up his own rules, he doesn’t do what he’s supposed to do. 

And for some reason, his garden grows.

Jasper’s garden is beautiful and lush and thriving. There is a corn stalk growing strong and tall out of the strawberries. There is so much parsley, we have to cut it back to make sure the peas — which like tomato cages much better than the stakes that I would have tried to train them up — have enough sunlight. The spinach, calendula and cherry tomatoes are doing great, even though we didn’t plant any this year. Last year’s ignored plants went to seed and just did what plants have done since plants began.

They had no reason not to in our garden. 

For some reason, I often think about disability in the vegetable garden. Humans often have incredibly detailed judgements of the physical differences of other humans. We can even judge animals with physical differences. But there can be quite a lot of variation in individual plants before we start making judgments about them. Who cares if it’s missing a leaf or two? Who cares if one is shorter than the other? Who cares if it takes a fraction longer to grow? 

Along the West Coast, where I live, many trees stretch eastward, away from the ocean, looking as though they were bent by the wind. These trees would grow fairly symmetrically anywhere else, but the harsh ocean wind kills the new buds that try to grow on the windward side. No one calls the result crippled. Or defective. Or disabled. 

We call it beautiful. We put it on postcards. 

Those trees remind me of the miracle of life. How even in the harshest circumstances, even when irreparably damaged by the world, even when planted where nothing should be able to grow, life not only survives but thrives. 

My children survived and thrived under extremely harsh circumstances. And where others might see brokenness and judge them less-than or “other,” I see beauty and strength and resilience. 

A version of this story ran on June 27, 2021. View the full archive by becoming a paid subscriber.

*Not his real name

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Montgomery Advertiser (Alabama): “Sen. Tommy Tuberville, Paris Hilton back legislation to prevent abuse in youth facilities”

Just over a year ago, on April 11, 2022, 15-year-old Connor Bennett died after attempting to take his own life inside of a residential youth treatment facility in Tuskegee. For five months leading up to that day, Bennett allegedly endured physical, sexual and verbal abuse. 

His mother said when he asked the staff who were supposed to be supporting for help, they ignored him. 

[…]The allegations [of abuse in facilities like these] extend beyond Alabama, and this week, U.S. Sen. Tommy Tuberville of Alabama was among the five congressmen who introduced a bill to address oversight of these kinds of facilities. 

“States are doing the best they can do to regulate, but we need to do more at the national level,” Tuberville said at a news conference. “There’s an old saying that sunlight is the best disinfectant. We need to open our eyes and put the sun on what’s going on in this country with these facilities. We need some more sunlight on these facilities so we can put a stop to the waste, fraud, and abuse in the system.”

The Stop Institutional Child Abuse Act proposes greater transparency from these facilities that are privately owned and government-contracted. The bill would establish a federal work group to provide oversight of these facilities, and it would direct the National Academies of Sciences, Engineering and Medicine to study the use of behavioral intervention methods like restraints and seclusion on children in the facilities. 

U.S. Rep. Ro Khanna (D-California), Sen. Jeff Merkley (D-Oregon), Sen. John Cornyn (R-Texas) and Rep. Buddy Carter (R-Georgia) teamed up on the legislation. [Celebrity Paris Hilton, who says she herself experienced abuse at such a facility, has also been championing this cause.]

[…]“Every day in America, children in residential facilities are being physically, emotionally and sexually abused by those responsible for their care. I’m never going to get my childhood back, but some of these children are losing their futures, too,” Hilton said at the news press conference. “How many more children need to die before you take action?”[…]

• From The Providence Journal (Rhode Island): “Bill would end out-of-school suspensions for young children unless they pose a threat”

[State] senate lawmakers are weighing a bill to limit out-of-school suspensions for young children, following criticism of the practice from the American Civil Liberties Union of Rhode Island.

On Wednesday night, the Senate Education Committee heard the proposal, sponsored by Sen. Ana Quezada, D-Providence, with a total of 10 senators signing on. It would stop out-of-school suspensions for students in preschool through fifth grade, unless the student is a danger to others.

Specifically, the legislation states that a suspension may only take place if "the school administration, in consultation with a school psychologist or other mental health professional, determines that such student’s behavior presents a threat to the physical safety or health of others which cannot be reduced or eliminated through interventions and supports."

[…]However, the Rhode Island Federation of Teachers and Health Professionals does not support the bill.

James Parisi, a field representative for the union, said that although he wants alternatives to suspensions, "teachers deal with the consequences of not imposing some kind of behavior standards in the classroom."

"And while I understand the ACLU focusing on […] the lost instructional hours … I’d ask you to consider […] the learning needs of the 25 others who remain, whose classroom has been disrupted, if that in fact was the case ...," he added.

The bill has been held for further study.

• From The Washington Post: “She didn’t have a Barbie with Down syndrome growing up. So she made one.”

[…]On Tuesday, Mattel and the [National Down Syndrome] society unveiled the most recent edition to the Barbie Fashionistas collection, a line designed to be more inclusive. Advocates hope the new doll allows children with Down syndrome to see themselves represented in popular culture — by one of the most iconic toy brands in the world, no less.

“It’s a huge step for representation,” Kandi Pickard, the National Down Syndrome Society’s CEO, said.

[…]Over the [past] year, [grassroots advocacy manager Kayla] McKeon helped advise Mattel. Compared with other Barbie dolls, the one introduced Tuesday is shorter and has a longer torso, which is characteristic of people who have Down syndrome, the society said in a news release. The doll has other distinctive features, including a rounder face, smaller ears, a flat nasal bridge and eyes that are slightly slanted and almond-shaped. They also gave the doll a single line on her palm, another trait often associated with Down syndrome.

A medical professional reviewed the doll’s physical features to make sure they were correct, the society said.

The new Barbie also wears orthotics, medical devices some children with Down syndrome use to support their feet and ankles. To ensure accuracy, the society provided Mattel with a box of orthotics as models.

The doll also sports a dress in shades of yellow and blue, the colors used to raise awareness of Down syndrome. She wears a Barbie-pink necklace with a pendant of “the Lucky Few” symbol— three upward chevrons representing three copies of the 21st chromosome.

McKeon said she’s happy with the way the Barbie turned out. As a child, she didn’t get to play with any dolls or toys that reflected a world in which people with Down syndrome exist. But she helped create one that does.

“I’m so proud and so excited,” she said, “that there’s a doll out there that looks just like me.”

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

Biden’s action comes as a flurry of activity is happening on the national scene to promote the use of paid family caregivers. Many family caregivers across the country are dreading the May 11 end of the federal public health emergency, which in many states temporarily allowed the Medicaid client’s “legal representative” to also be the paid care worker. This allowed parents — but also spouses and other kin — of children and adults receiving Medicaid’s Home and Community-Based Services (HCBS) to be paid for the labor they were already doing to care for their disabled family member.

Idaho medical parent Nathan Hill has started a nationally focused Facebook group on the issue: “CMS Keep Parents & Spouses As Paid Caregivers For Those With Disabilities” with more than 600 members at the time of this writing. Hill also wrote a a change.org petition calling for the federal government to take urgent action to prevent the loss of this support to these families.

Unfortunately, President Biden’s order does not include specific language around paying family caregivers. The closest it gets is stressing the need to bolster the workforce and improve the supply of care. In Section 2 of the order, this translates to raising pay rates to retain and attract care workers, something the President called out specifically in his Rose Garden speech.

The more than 50 directives in Biden’s executive order are a long-overdue and important expansion of the care economy. They align closely with the Administration’s National Strategy for Family Caregiving, released last fall, which had more than 300 recommendations across 15 federal agencies to increase access to care and support using existing resources.

Read more in last November’s issue:

The April 18 executive order will add the force of law to some of those recommendations. There could be improved access to stipends and telehealth psychotherapy for veterans’ caregivers, for example. However, much of the language in the order appears to be vague calls for studying or encouraging, rather than requirements for specific actions. The order includes:

*        Studying the home care workforce availability, pay rates and benefits to expand access;

*        Taking “steps” to ensure hospitals are informing family caregivers of options like HCBS and involving them in discharge planning;

*        Looking at requiring federal contractors to offer childcare options and paid caregiving leave for their workers;

*        And “prioritizing engagement” with parents, relatives, disabled people and other stakeholders to make “delivery and design of Federal care assistance and programs work better” for folks.

Overall, the executive order focuses on expanding access to care and support services and improving the quality of care. While it does not include direct provisions for paying family caregivers, it does aim to support the care workforce and make care more affordable and accessible for all individuals and families.

But for many who find that paid family caregiving is part of the web of support they need to live full, productive lives in their communities, this does not go far enough.

Fortunately, many states are stepping into the gap. Team Select Home Care — a national agency supporting paid family caregivers — says eight states are looking at adopting a family Certified Nursing Assistant model. The Florida Senate and House each have bills, as do New Jersey’s Senate and Assembly, and Montana’s House. Massachusetts might just do a rule change and Washington will conduct a legislative study on the model. Texas’ House and Senate, Connecticut’s House and Maine’s Legislature are all looking at this model. That is in addition to the six that already provide this type of option: Colorado, Arizona, New Hampshire, Pennsylvania, Indiana and California.

This does not include states that have or are looking at a non-CNA model. My home state of Oregon, for example, is likely to pass Senate Bill 91, which would create a permanent program for paid family caregivers for attendant care hours with extra training requirements but no certification.

Read more on Oregon’s effort:

This does not need to be a piecemeal, state-by-state solution. In their November 2022 “Strengthening the HCBS Ecosystem” report, the National Council on Disability recommended that the temporary programs allowing for paid family caregivers during the public health emergency continue on.

Unpaid family caregivers have been a constant part of the HCBS ecosystem, keeping loved ones cared for but not being paid to do so, causing impoverishment and a lack of respite, among other things. Medicaid authorities, such as state plan services and waivers, were utilized to pay family caregivers, preventing further spread of the virus, alleviating the direct care workforce crisis, and helping families maintain some income. These flexibilities should remain permanently—family caregivers should be paid, and CMS should make this a permanent [option] to support the nation’s need for a strong HCBS system. [pg 68]

We need a national program and national guidance. President Biden’s next executive order on this topic should be a declaration of a public health emergency recognizing the need for paid family care providers during this post-pandemic period where care workers and in-home nurses are even less available than they were before COVID-19. For more than two years, we have proven the success of a paid family caregiver program. Can we please just keep it going?

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From This Is Reno (opinion): “Support for Senate Bill 158 will help Nevada children”

[…]the abuse of disabled children in schools is a real problem. 

For example, a lawsuit was made in Clark County School District involving the sexual abuse of two disabled preschoolers and was settled for $9 million. Another case involving criminal negligence by an educator and battery by other students in Washoe County settled for $4 million. A more recent case filed in February about the repeated physical abuse of a toddler by an educator is ongoing. 

These cases only represent a small fraction of the abuse happening to disabled children in schools. The majority of these cases go unreported, providing no justice for Nevada’s disabled youth and their parents.

Senate Bill 158 requires each school district to install surveillance cameras in each classroom that is used for special education classes. The cameras must also be capable of recording sound. To protect the privacy of special education students and teachers, a consent form outlining all aspects of the use of video cameras must be signed. Following written consent, a written notice is to be provided in every entrance to a classroom that is required to be recorded. 

According to the bill, the video cameras are to only be used during regular school hours. The principal is also required to provide extensive training to any employee that will have access to the recordings. To protect the confidentiality of these recordings, they are only to be accessed in cases of legal proceedings, criminal proceedings, in response to a subpoena, or to check the proper function of the cameras. 

• From The Dallas Morning News: “Private schools for whom? Special needs students caught in Texas’ school choice debate”

[…]As the Texas Legislature debates a voucher-like program that would give families public funds to help pay for private school, supporters face an uphill battle in the House. Republican proponents are pitching a number of paths forward with specific cutouts that could win over skeptics. Among them is a narrow option that would provide education savings accounts only to students like those at Notre Dame School — children with special needs.

Based on the testimony, “there’s definitely children who need that specialized care and the financial burden shouldn’t be what keeps them from getting a good education,” said Rep. Jacey Jetton, R-Richmond.

Children with disabilities are central in a fierce debate over any school voucher program. Roughly 13% of Texas public school students receive special education services.

While campuses such as Notre Dame exist specifically to serve those with developmental disabilities, private schools in general can deny admission to students, including those with special needs.

Public schools, meanwhile, are required to serve every child.

Families seeking programs like Notre Dame — many of whom have tried public school and found it unable to best serve their kids — could benefit from an $8,000 education savings account as proposed in legislation, officials say. […]

• From The Independent (United Kingdom): “Call for urgent measures to prevent ‘appalling’ abuse of disabled children in UK care homes”

Recommendations for a more joined-up approach to the care of disabled children in care homes must be fully implemented otherwise “appalling harm” suffered by this vulnerable group could be repeated, experts have warned.

Health and education watchdogs should carry out joint inspections of residential settings and urgent training must take place on the use of physical restraints, the Child Safeguarding Practice Review Panel said.

It has made nine recommendations to government departments, inspectorates and NHS England, as it published its latest report on protecting children with disabilities and complex health needs from abuse in these settings.

The phase two report, published on Thursday, follows a review in October which found a culture of abuse and harm, including evidence of physical abuse, violence, neglect, emotional abuse and sexual harm.

[…] Placing children into settings at a distance from family and friends “should be seen as a risk factor in planning”, the panel said, stating that if this is considered the best option “mechanisms must be in place as part of the child’s plan to support regular contact between children and their families”.

[…]The Local government Association said the recommendations should be “an urgent call to action for the entire sector” and asked for councils to be given additional powers to hold local partners, including health organisations and schools, to account for their role in supporting children with specific needs.[…]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

Hello readers,

This week we have a bumper crop of news stories relevant to those raising disabled and neurodiverse children. So, we have an expanded news briefs section taking over this issue. As always, you can click the links to get to the original story. Here are the headlines you’ll find inside:

* Report finds more than 130 emergency teachers serving as special education teachers in Oregon, potentially violating federal law

* Pennsylvania introduces disability awareness curriculum to K12 schools, a first in the nation

* Iowa passes bill to tighten Medicaid and food stamp eligibility, burdening recipients with new requirements

* New genetic research offers hope for improved diagnosis and treatment of childhood epilepsies

* Oregon Congresswoman Suzanne Bonamici introduces RISE Act to improve higher education accessibility for students with disabilities

Medical Motherhood is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.

Report finds more than 130 emergency teachers serving as special education teachers in Oregon, potentially violating federal law

The Oregon Capital Chronicle published a report this week that more than 130 emergency licensed teachers are serving as special education teachers in Oregon. This appears to violate the Individuals with Disabilities Education Act (IDEA) and go against recent guidance from the federal Office of Special Education and Rehabilitative Services (OSERS).

U.S. law requires schools to offer children with disabilities an appropriate public education equal to that of their peers without disabilities. State law requires special education teachers to have a bachelor’s degree, full state certification, or be enrolled in a special education degree program. Emergency teachers, however, do not need to meet these standards.

The Chronicle’s report suggests that the state is responsible for ensuring that all teachers are qualified, but says officials at the Oregon Department of Education and the Teacher Standards and Practices Commission claim they do not know whether the 131 emergency special education teachers working in schools are on a pathway to full licensure. The use of emergency teachers has increased sharply since the COVID-19 pandemic in all types of classrooms, and today totals more than 520 such teachers across the state.

Low-income students, students with disabilities, and English language learners are most likely to be taught by the underqualified teachers, negatively impacting achievement, according to the Learning Policy Institute in California. The Chronicle report says 70 percent of fourth and eighth graders with disabilities in Oregon scored “below basic” in reading on the latest standardized metrics.

The report notes that the problems are not new or unique to the state, however. The Oregon Education Association reported in 2021 that the state has struggled to find enough special education teachers for at least 25 years. The National Center for Education Statistics also claims that special education teachers have a 46 percent higher turnover rate than other teachers and that it’s driven by a lack of administrative support, a lack of collaboration and excessive paperwork.

Pennsylvania introduces disability awareness curriculum to K12 schools, a first in the nation

Pennsylvania is the first state in the nation to introduce a disability awareness curriculum, according to an article out this week in the Pittsburgh Post-Gazette.

The Pennsylvania Department of Education has launched the Disability Inclusive Curriculum Pilot Program, which will provide new curriculum to K12 schools that will highlight historical figures with disabilities and promote topics that help students understand that disabilities are natural. The program aims to reduce the stigma around disabilities and to include disability as part of a school-wide strategic plan.

The program is the result of Pennsylvania H.B. 1809, introduced last year by Republican Rep. Jason Ortitay “to create a more tolerant and inclusive world.” It passed with bipartisan support.

School districts will need apply for up to $30,000 in grant funding to help introduce it. Successful applicants will receive $10,000 per year for three years, running through June 2026, and curriculum can be implemented next school year.

Mary Anderson Hartley — executive director at the PEAL Center, or Parent Education & Advocacy Leadership — told the Pittsburgh Post-Gazette that districts should apply for the funding. “Disability shouldn’t be a mystery to all of their classmates,” Anderson Hartley said. “This embedded curriculum provides critical acknowledgement that people with disabilities live, work, play and lead in our communities.”

Iowa passes bill to tighten Medicaid and food stamp eligibility, burdening recipients with new requirements

The Associated Press reported this week that Iowa lawmakers have passed a bill that would require more checks on eligibility and ultimately result in around 1 percent of recipients losing Medicaid and food stamp benefits. This would amount to an estimated 8,000 Medicaid recipients and 2,800 Supplemental Nutrition Assistance Program (SNAP) recipients. The changes are estimated to save the state roughly $8 million annually beginning in 2027.

Democrats argued that the bill would create barriers for those already struggling with high costs and remove qualified recipients. The changes would also result in a loss of $42 million in federal funding in Iowa by 2027, according to a legislative analysis.

The bill would not allow SNAP benefits to any household with more than $15,000 in liquid assets and personal property, a change from the current law which has income caps but no restrictions on assets. The Republican-backed measure would require state agencies to use various federal sources, like tax filings, to ensure eligibility. Applicants could also lose their aid if they don’t respond within 10 days to new regular state checks. A private company is likely to be hired to administer the new rules, according to the AP.

New genetic research offers hope for improved diagnosis and treatment of childhood epilepsies

New research funded by the National Institute of Mental Health, National Institute of Neurological Disorders and Stroke, and National Institute on Aging sheds light on genetic mutations that may play a key role in the development of epilepsies resulting from malformations of cortical development (MCD). MCD is a rare but serious condition that can cause life-threatening treatment-resistant epilepsy. It is caused by tissue that was damaged or developed abnormally during prenatal brain formation.

Led by Dr. Joseph Gleeson, M.D., at the University of California San Diego and the Rady Children’s Institute for Genomic Medicine, the international and interdisciplinary study performed genetic profiling of tissue from almost 300 children. Brain samples were collected as part of surgery to treat epilepsy. The researchers also studied control samples.

This study identified 69 mutated genes associated with MCD, of which 60 were genes linked to MCD for the first time. Twelve of the mutated genes were recurrently mutated, meaning they were identified in at least two different patient brain samples, giving more confidence that they contribute to MCD.

The identified genes could offer potential drug targets, help inform new clinical classifications and diagnoses, and ultimately lead to personalized treatments or early interventions for a range of mental and physical health conditions.

While the study provides insights that could lead to improved diagnosis and treatment of MCD, parents of children with these conditions should keep in mind that the research is still ongoing and the identified genes are only a small piece of the puzzle. Each child will have their own unique needs and prognosis and parents should continue to work with healthcare providers to chart the best path.

Oregon Congresswoman Suzanne Bonamici introduces RISE Act to improve higher education accessibility for students with disabilities

Oregon Congresswoman Suzanne Bonamici has submitted H.R. 2401 for consideration by the 118th Congress. The RISE Act — Respond, Innovate, Succeed and Empower — would appropriate $10 million to improve services to students with disabilities to attend higher education. If passed, the law would require universities, colleges and other institutions of higher education to take steps to make it easier for students with disabilities to attend. The bill would require them to accept a former IEP or 504 plan as eligibility for accommodations and to report data on the number of students with disabilities who are enrolled, the types of accommodations they receive and the number of degrees and certificates awarded to them. The bill’s sponsors hope that this sort of information will make it easier for parents and students to make informed decisions about the institutions before enrolling.

"Students with disabilities face many barriers to earning a degree or credential after high school, even without the additional burden of unnecessary paperwork and fees," said Bonamici in a press release. "Congress can help students with disabilities as they transition to higher education by making college support services more accessible — services for which these students already have a documented need. The RISE Act will reduce expensive and unnecessary requirements that students with disabilities face when entering college, increasing the likelihood that students with disabilities are able to complete higher education."

The bill has a bipartisan mix of five co-sponsors and has been referred to the House Committee on Education & the Workforce, of which Bonamici is a member. However, Skopos Labs a political science AI firm, gives the bill a 5 percent chance of passage.

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

When Lenore Eklund, our fabulous Medical Motherhood editorial cartoonist, sent over this month’s edition of Where is the Manual for This?! I literally laughed out loud. I feel this HARD. My to do list is as long as my arm and somehow even when I get a surprise break I still don’t know what to do with myself. The tension between “rest” and “productivity” is particularly strong. Productivity usually wins but rest would sure be nice…

What do you do when you get a surprise break? What do you want to do? Let us know in the comments or reply to this email if you are a subscriber.

The second Sunday of every month Medical Motherhood publishes Where Is the Manual for This?!, an editorial cartoon by Lenore Eklund. If you feel like we just had one: you’re right! Due to publication schedules on a couple of freelance pieces, March’s edition was published just a couple weeks ago.

Medical Motherhood’s news round up

Summaries of news and opinion from outlets around the world. Click the links for the full story.

I’m trying something new this week: Brief summaries of these news stories on disabled children and their families, rather than quotes from the piece. There are pros and cons to this, but I’m hopeful that the summaries will be more useful. As always, you can click the headline to access the full piece. What do you think? Do you like this better or should I go back to the snippets? Write to me by replying to the email if you are a subscriber, or leave a comment.

• From the Oregon Capital Chronicle: “Proposal on paying parent caregivers of children with highest disability needs advances”

Oregon state lawmakers are considering a proposal to pay parents of children with the highest medical and behavioral health needs to care for them. Senate Bill 91 allocates $3 million in state funds over the next two years, which is less than what other proposals that would have included more children would cost. The bill would provide a limited option to the parents who have been advocating for such legislation for more than two years. The program would be funded in part by Medicaid and needs approval from the federal Centers for Medicare & Medicaid Services. The total discretionary budget for all state programs this year is about $325 million, not nearly enough for state Democrats’ top priorities.

Human Services Committee chair Sara Gelser Blouin of Corvallis proposed the scaled-down version of the bill over financial concerns, and she won the support of all of the committee members. However, the proposal's limited scope has received mixed responses from parent caregivers and advocates. Senate Minority Leader Tim Knopp of Bend had proposed a similar bill that would have covered all children with in-home support hours but that was allowed to die in committee due to budget concerns. The lawmakers said they hope to expand the program when the revenue forecast is brighter.

• From Florida Politics: “House approves new path for parental oversight of adult children with disabilities”

Florida's House of Representatives has unanimously approved a bill, HB 19, which allows parents of adult children with disabilities to remain involved in their child's education without the need for guardianship.

“With your vote today, you will stop an expensive and stressful rush to guardianship by parents of disabled students across our state just so they can sign a permission slip or just so they can know when their loved one is off campus,” said Democratic Rep. Allison Tant of Tallahassee, who filed the measure as a result of her own experience with an adult son with complex disabilities.

Students with disabilities can continue in public schools until they are 22 years old, but when they turn 18, their parents no longer have an automatic right to sit in on teacher conferences or decision-making meetings. As a result, parents have had to resort to gaining guardianship, which is costly and complicated. The new bill would inform the student with an individual education plan a year before they turn 18 what this means and work with their education providers to create a channel for parents to remain informed about educational matters. The Florida Senate is expected to pass the bill as it has already received two Senate committee approvals.

• From University of California-Riverside: “One of every six autistic children are expelled from daycare”

According to a study conducted by the University of California, Riverside, roughly one in six autistic children are expelled from preschool programs, with the average age of rejected children being only 3.3 years old.

The research paper, “Preschool and Child-Care Expulsion: Is it Elevated for Autistic Children?,” was published in the journal Exceptional Children.

The consequences of expulsions for these children are chilling, as they face more conflict with and dependency on their teachers when they enter kindergarten, among other difficulties. Autism characteristics, including difficulty with social communication and some repetitive behaviors, can be misinterpreted as misbehavior, making autistic children more vulnerable to expulsions. The study found that teachers may miss children’s non-verbal attempts to communicate their needs, which heightens children’s anxiety and can result in temper tantrums at such a young age.

The study’s authors are seeking additional funding for their Smooth Sailing interventions to be adopted by preschool and early childhood educators. These are aimed at forging better relationships between autistic students and their teachers.

“Kids who have good relationships with their teachers in early childhood settings do better academically, socially, and emotionally,” said Jan Blacher, the study’s lead author. “They are less likely to be asked to leave school, and in high school, they are more likely to get better grades and graduate.”

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

Tomorrow, April 3, at 3 p.m. is the last chance for Oregon’s Senate Human Services Committee to pass Senate Bill 91 on to the Ways and Means Committee. From there, it will need to be funded and pass the full legislature. After that, our state agency would develop an application to the Centers for Medicaid and Medicare and rules for the program. After alllll of that, there could finally be a permanent program in Oregon that hopefully could grow and expand to include more and more children. It doesn’t feel like a win compared to what should happen — all children with support hours being able to have their parent as their support worker if that makes sense for them — but it’s a long way from the brick wall it felt like one year ago at this protest.

March 2022 — As I drove back from the Family Caregivers Car Caravan at the Capitol in Salem last Thursday, I was struck by the depth of feeling from so many of the people I spoke with there. The love between parents and young children is a world-changing force.

Watch a video of the arrival of the caravan at the Human Services building: https://www.facebook.com/shastakm/videos/501086394888524

In the depths of despair, what do any of us say? “I want my mommy,” right? Even if our relationship with our mother is complicated, we have all known the original safety of a womb.

Children — many too young to fully grasp the economic consequences of these policies — came out with their parents and caregivers and friends to ask Oregon to make paying parent-caregivers permanent. This has been a temporary option in the state due to an exception granted during the COVID-19 public health emergency. The Oregon Office of Developmental Disabilities Services recently announced that it would explore options for a permanent program but was vague on the details.

Supporters — like me — want parents to have a seat at the table when such a permanent program is being devised.

Ideally, the children themselves would be advocating for their own needs, but we parents often find we need to advocate for them until they have enough personal agency.

My 11-year-old twins came down and participated in their own way — the loud noises were a bit of a sensory overwhelm but they stayed in their safe car cocoon and loved the energetic atmosphere.

I have explained the issues to them as best I can — that we love our awesome caregivers but they can’t always be around, so when they can’t it would be nice for mama to get those hours so she can feel like she’s contributing — and to buy the stuff we need to survive and thrive.

That day, I gave them crayons and poster board and prompted them with a list of slogans they could write if they wanted. But they surprised me.

I thought Mack* would select “A person’s a person, no matter how small,” a quote from his current favorite author, Dr. Seuss. But he chose: “The health emergency never ends for us.” It’s true — COVID-19 was just a variation on a theme for many families with medically complex kids. And, the current labor shortage is particularly acute in the health fields — there are very few caregivers around to employ.

Jasper* skipped my list entirely. He drew a house with a mother and baby and wrote: “Do it for them.” Then, he wrote in bold letters on the side of the car: “Moms put the ‘care’ in caregiver! They care about their kids and they care about their needs.”

At the last minute, Mack surprised me again and said that he wanted to write on the car that other states have this as an option, so I wrote that for him, too.

I tell you all this so you know where my family stands. I wrestle a lot with what political activity I’m “allowed” to do and still call myself a journalist. I used to scoff at people — “citizen journalists” — who would cover protests they so clearly agreed with instead of acting impartially. But the world is ending, the stories I’ve heard have broken my heart, no one else I know of covered this rally, so I can’t bring myself to play a role for the sake of a few imaginary critics. At least on this issue, transparency will have to suffice in the place of objectivity.

As I’ve made clear in previous issues of this newsletter, I definitely have an opinionabout paying parent-caregivers — one acquired through a decade of personal experience, three years of research and dozens of conversations. I welcome a conversation with anyone who disagrees, so please reach out.

So, I bore witness as families of disabled children caravanned around the Capitol, honking and shouting, and ended at the Barbara Roberts Human Services building, home to the Department of Human Services and ODDS. With balloons and signs — which they then taped to the building’s front doors — 24 cars full of people asked their voices to be heard. Families say the temporary allowance for parent-caregivers has improved their children’s health and stability in dramatic ways.

Mick Stevens, a Tigard resident who was profiled in this piece in The Lund Report, came down to protest in Salem with his 12-year-old daughter, Jillian. Stevens has been her full-time caregiver almost all of her life out of necessity.

“I think paying the parents, you’re buying the best caregivers for the money,” he said. Stevens added that Jillian has gained skills and experiences that she wouldn’t have gotten with an inconsistent patchwork of caregivers.

Alicia Bodine drove from Dallas, Ore., with her mom and daughter. Bodine cannot afford to work due to Zoë’s needs, so she has to live with her mom — who is allowed to be a paid caregiver, while Bodine cannot. Bodine said she knows that people will criticize her by saying she chose to have a kid and shouldn’t need government support. “It doesn’t matter, because I know that I’m not a lazy person.”

Mellani Calvin, whom longtime readers will recall I spoke with for this piece on social security, made the trip down from Portland. As head of a nonprofit that helps people apply for social security disability benefits, she says that process is still enormously complicated and has even gotten worse since COVID-19. “Families should not have to work so hard to get what they need,” Calvin said.

Several people told me they couldn’t make it due to last-minute medical emergencies with their children or their ongoing 24-7 care needs. Gabriel Triplett, the rally’s lead organizer, acknowledged that in his kick-off speech.

“There are plenty of people throughout Oregon who can’t make it. Because even though they are getting paid to take care of their kids, they are the only one there. They’ve got nobody else,” Triplett said. “We’ve got plenty of people who couldn’t make it today but we fight for them.”

Triplett’s own children couldn’t come either. Oscar, 9, spoke with me over Zoom using a communication device he operates with his eyes. “One good thing about my parents being home is that I get to spend more time with them. I can’t think of anything bad about it,” he said.

Belen Molina had to call 9-1-1 the night before for her 2-year-old medically fragile daughter, but still managed to make the rally after she got her airway cleared with a suction machine.

“How amazing would it be if I could have the resources for what she needs?” Molina said. “It would mean we could get her more of the expensive things she needs and I would know that she’s always taken care of.” The mother of two disabled children is not currently paid because her daughter’s hours are under the limit of the temporary program.

Sydney McIntosh, who has been a paid caregiver for a decade, said she also supports parents being able to do what she does. “I think COVID has made it really difficult to trust people outside your bubble,” McIntosh said. She added that she had to make a lot of personal sacrifices during the pandemic in order to make sure her clients stayed safe, like social distancing, masking and isolating, even when not required by law. “That’s not something everyone is prepared to do.”

She added that not all families will chose to use the hours to pay a parent, “but it’s important to have the option.”

Calli Ross came from Sherwood on behalf of her 7-year-old son, who has end-stage heart and lung disease. She said under this program her husband no longer has to work two jobs to pay the bills. Ross said it is impossible to fill the 540 hours a month of nursing care her son needs. Except for 18 hours a week, the rest of the 24-7 job falls to her and her husband. Under the temporary program, they have paid off medical debt and bought new medical equipment. “Everything we’re making we’re putting back into my child,” Ross said.

Dr. Satya Chandragiri, a psychiatrist at Salem Health hospital and a school board member for the Salem-Kaizer School District, wandered into the protest and thought it was a great idea. He said he frequently sees patients in his practice who are so completely overwhelmed by the hoops they have to jump through in addition to their child’s extra needs that they don’t end up getting any government support for their kids.

“It’s not just the child that has a disability, it’s the entire family that struggles,” he said. “Even if they have eligibility, getting into the developmental disabilities system is almost impossible, honestly.”

Chandragiri said children can struggle with strangers coming to help them with intimate care needs and have trauma reactions. “I think family are the best caregivers,” he said.

Chandragiri also said he was impressed that so many people could even come to the rally because usually care needs in this population are so unrelenting.

Triplett, the rally organizer, said the temporary policy had given struggling families just enough breathing room to organize for what they needed.

“We need to make this permanent so that we can continue to fight.” And, he added: “We’re out here today because the NICUs across the state are filled with brand new parents who don’t know yet how important this policy will be but will need it nonetheless very soon.”

*Not their real names

A version of this story ran on March 27, 2022.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Disability Scoop: “Autism Now Affects 1 In 36 Kids, CDC Says”

Autism rates across the country continue to climb, but for the first time, the demographics of children diagnosed with the developmental disability are starting to shift in a big way, according to new data from the Centers for Disease Control and Prevention.

A report out Thursday in the federal agency’s Morbidity and Mortality Weekly Report shows that 1 in 36 children, or 2.8%, have autism.

The new estimate is based on information gathered on 8-year-old children in 11 communities in 2020 by the CDC’s Autism and Developmental Disabilities Monitoring, or ADDM, network.

[…]For the first time ever, the percentages of Black, Hispanic and Asian or Pacific Islander 8-year-olds with autism were higher than white children, which CDC officials said may be a sign that efforts to improve screening, awareness and access to services among traditionally underserved populations are working.

[…]Across the communities studied, autism prevalence ranged from 1 in 43, or 2.3%, of children in Maryland to 1 in 22, or 4.5%, in California. CDC officials said that could be due to differences in how communities are identifying children on the spectrum.

Alycia Halladay, chief science officer at the Autism Science Foundation, said the new data suggests that there is better awareness of autism, particularly among minority communities. But, given that a large percentage of Black children with autism also had intellectual disability and likely had more pronounced symptoms, she said that “there is still a way to go.”[…]

• From WBUR (Massachusetts): “In Oregon, some students with disabilities are fighting 'an uphill battle' to go to school”

Democratic state senator Sara Gelser Blouin of Oregon says parents are concerned that some children with disabilities are not getting equal access to school.

Schools implement abbreviated school day programs, she says, when they claim they don’t have adequate staffing to meet student needs. Now she has a bill making its way through the state legislative session that aims to address the issue.

“Some students don't even get to start kindergarten with a full day of school,” she says. “They are welcomed to elementary school by being put on an abbreviated school day… that could be 25 minutes a week of online instruction and that's it.”

Elizabeth Miller, an education reporter at Oregon Public Broadcasting, says parents have been complaining about the practice for years.

“I reported on a family who moved to Idaho instead because their student wasn't receiving the services they felt they needed,” she says. “It's a tough situation.” [Read the full transcript of the interview at the link.]

• From Philstar.com in the Philippines: “Landmark law for children with disabilities still unimplemented a year since passage”

[…] Advocates of inclusive education and persons with disabilities lauded the passage in 2022 of a landmark law [in the Philippines] that would pave the way for improved programs and services for learners with disabilities.

Republic Act 11650, or the Inclusive Education Act, was signed into law in March 2022. It mandated all cities or municipalities to establish an Inclusive Learning Resource Center (ILRC) – a physical or virtual one-stop-shop providing teaching and learning support to students with disabilities while providing free therapy services.

While the passage of the law was hailed as a beacon of hope for children with disabilities, a year later, the government has yet to release its implementing rules and regulations (IRR), which would have moved the needle closer to ensuring students with disabilities had access to quality education and health services.

[…] "There are still a lot of schools that turn away students for the simple reason that they will say: ‘We are not trained. We don’t want to short-change the child,’" [Special education teacher Cristina] Aligada-Halal said in a phone interview with Philstar.com. 

"What happens is that it now becomes mostly the parent’s accountability. It’s like, you enrolled your child there knowing that it is not an inclusive institution. It becomes mostly their choice and burden to bear," she said.

[…]E-Net Philippines, a civil society network of education groups, called on the government on March 22 to lay down clear guidelines on how to implement the law, which is meant to address the education and health needs of around 5 million Filipino children with disabilities.  

[…]Aligada-Halal, who is also a member of the ADHD Society of the Philippines, said that some parents of children with ADHD she has spoken to are now "skeptical" a year after the disability sector celebrated the passage of the law.

"The conversation on disability rights has changed. Last year, when it was newly signed into law, everyone was so hopeful. But then towards the latter part of the year, (we saw that) nothing changed," she said.

"Schools don’t feel compelled to act on it because they are also waiting for instructions," she added.[…]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

The above restrictions and limits may not apply in all states, but these were taken directly from a presentation given by Oregon’s Office of Developmental Disabilities Services on Feb. 6. What are some restrictions and limits on disability supports that drive you nuts in your state? Post in the comments or reply to this email if you’re a subscriber.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From PBS: “Supreme Court unanimously rules for deaf student in education case”

The Supreme Court ruled unanimously Tuesday for a deaf student who sued his public school system for providing an inadequate education. The case is significant for other disabled students who allege they were failed by school officials.

The case the justices ruled in involves Miguel Luna Perez, who attended public school in Sturgis, Michigan. Perez’s lawyers told the court that for 12 years the school system neglected the boy and lied to his parents about the progress he was making, permanently stunting his ability to communicate.

The justices ruled that after Perez and his family settled a complaint against the school system — with officials agreeing to pay for additional schooling and sign language instruction — they could pursue money damages under a different federal law. Justice Neil Gorsuch wrote in an eight-page opinion for the court that the case “holds consequences not just for Mr. Perez but for a great many children with disabilities and their parents.”

[…]Perez’s family and the school district ultimately settled the IDEA claims. The district agreed to pay for extra schooling and sign language instruction for Perez and his family, among other things, and he graduated from the Michigan School for the deaf in 2020. After the settlement, the family went to federal court and, under the ADA, sought monetary damages, which are not available under the IDEA.

Lower courts said Perez was barred from pursuing his ADA claims because of language in the IDEA, but the Supreme Court disagreed. Gorsuch wrote: “We clarify that nothing” in the IDEA “bars his way.”

• From Teen Vogue (Opinion by Alice Wong): “The ‘Unwinding’ of Medicaid Coverage Will Be Difficult for Disabled Americans, Leave More People Uninsured”

I’ve been on Medicaid since I turned 18. It has been a lifelinebecause it provides personal-care services that allow me to live in the larger community rather than in a private facility. For many Americans, though, Medicaid coverage is now at risk. Under the Consolidated Appropriations Act of 2023, states will resume redetermining eligibility for all Medicaid enrollees on April 1. That means an estimated 18 million people may lose their coverage in the next 14 months, including some people who enrolled during the pandemic, according to a report from the Urban Institute. 

Like the White House’s plan to privatize COVID treatments and vaccines, Medicaid coverage is another public health emergency measure that’s been deemed no longer necessary. In early 2020, Congress enacted a rule that barred states from dropping people from Medicaid, thus ensuring access to health care during the pandemic. But now the government will allow the number of uninsured people to soar in an “unwinding” process that could have major consequences.

Every year, I have to go through a Medicaid redetermination process, which assesses my eligibility so that my coverage can be renewed. Even though I’ve been through this process seemingly countless times, when that thick packet from the county comes in the mail, it still creates a pit of dread in my stomach. One small error can be disastrous, resulting in what’s called “churn,” the gap in coverage that can lead to delays in care while people re-enroll — or people can fall through the cracks altogether. Administrative and procedural barriers can also lead to someone being dis-enrolled, with low-income people and people of color disproportionately at higher risk due to structural inequities. 

• From the Virginia Mercury: “Feds identify ‘significant’ ongoing concerns with Virginia special education”

After failing to meet federal requirements to support students with disabilities in 2020, the Virginia Department of Education will remain under further review by the federal government after continuing to fall short in monitoring and responding to complaints against school districts, according to a letter from the U.S. Department of Education.   

“We have significant new or continued areas of concerns with the State’s implementation of general supervision, dispute resolution, and confidentiality requirements” of IDEA, stated the Feb. 17 letter from the Office of Special Education Programs.

The U.S. Department of Education first flagged its concerns in a June 2020 “Differentiated Monitoring and Support Report” on how Virginia was complying with the Individuals with Disabilities Education Act, following a 2019 visit by the Office of Special Education Programs.

[…]The decision comes after the U.S. Department of Education announced in November that Fairfax County Public Schools, Virginia’s largest school district, failed to provide thousands of students with disabilities with the educational services they were entitled to during remote learning at the height of the COVID-19 pandemic.

Virginia is also facing a federal class-action lawsuit over claims that its Department of Education and Fairfax County Public Schools violated the rights of disabled students under IDEA.

Parents involved in the case said the Virginia Department of Education and Fairfax school board “have actively cultivated an unfair and biased” hearing system to oversee challenges to local decisions about disabled students, according to the suit.

[…]The federal government said if Virginia could not demonstrate full compliance with IDEA requirements, it could impose conditions on grant funds the state receives to support early intervention and special education services for children with disabilities and their families.

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

I love camping. So I knew that even with our family’s extra challenges, I had to figure out some sort of way to keep going for summer adventures in the great outdoors. Through a lot of trial and error, I can say with confidence that camping with wheels is not only possible but worth the effort.

Fortunately, camping — and travel generally — is being made easier by a new wave of accessibility in the tourism world. There are accessible tourism conferences, like The Accessible & Inclusive Tourism Conference, accessible tourism organizations like TravelAbility, accessible tourism blogs like WheelchairTravel.Org, and plenty of resources from travel bureaus.

Now, we can add one more resource to the list. For those who, like me, live in Oregon, or for anyone who wants to come here, check out my new feature on accessible camping spots on TravelOregon’s website.

Bonus: I have an audio version of the article in today’s podcast. You can also listen to it by clicking the play button at the top of this post. Don’t forget to follow on Spotify or Apple Podcasts so it comes up in your feed.

Here are some more camping-with-disabilities tips:

* Outdoorsy.com is like Airbnb for RVs. I can’t say it’s terribly affordable — comparable to hotel prices — but it does offer a way to have an adventure with kids who need certain amenities wherever they go.

* To find more accessible camping options in Oregon, click the “features” button on Oregon State Parks’ website.

* Planning your day during an Oregon camping trip? Learn more about Oregon trails’ ADA features and options.

* For camping spots throughout the country: Recreation.gov also has a checkbox in the upper right corner of its search bar for “Accessible camping.” 

Do you have other tips and experiences you want to share? Post them in the comments or reply to this email if you’re a subscriber. And happy trails to you!

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From The Washington Post: “Okla. lawmaker says Bible endorses corporal punishment of disabled children”

Oklahoma state Rep. John Talley thought his bill to bar schools from spanking children with disabilities would find little to no opposition at the state’s legislature. After all, the Republican lawmaker said he had fielded calls with dozens of families and educational groups, drawn inspiration from his personal experience and received support from colleagues on both sides of the aisle.

Yet on Tuesday, what seemed like a rare bipartisan moment quickly came crashing down as other Republican lawmakers invoked the Bible to argue against Talley’s House Bill 1028, claiming in some instances that “God’s word is higher than all the so-called experts,” as Rep. Jim Olsen posited during the proposed legislation’s debate. The bill wound up with 45 votes in favor and 43 against — six short of the 51 it needed to pass.

[…]Corporal punishment, though in decline, remains in use in American schools. For centuries, students have been whipped or struck by rulers and paddles. Even though New Jersey became the first state to ban the practice in public schools in 1867, it took over a century before other states followed suit. Then, a 1977 Supreme Court decision, Ingraham v. Wright, deemed corporal punishment at public schools to be constitutional and left it up to the states to decide what to do.

Oklahoma is among the 19 states where corporal punishment is still legal in public schools. In almost all states, except for New Jersey and Iowa, it’s also allowed in private schools.

[…]Talley said he still has hope that his bill will become state law. He’ll bring it up for another vote Monday, when lawmakers who had been absent Tuesday would probably be back.

“This is an important one, and I’m not giving up,” said Talley, who added that he’d been subjected to the punishment as a child and whose wife is a retired special education teacher. “I had a call with a U.S. Marshal who told me his autistic daughter got spanked three times in a day for not doing her math correctly — there’s a point when you have to step up and say ‘this is just wrong.’”

• From Courthouse News Service: “Orthodox Jewish parents claim California discriminates against their disabled children”

LOS ANGELES (CN) — A group of orthodox Jewish parents of disabled children sued California for religious discrimination because the state won't pay for special education programs and resources at private religious schools.

Six parents and two Jewish schools, backed by the Becket Fund for Religious Liberty, filed a complaint Monday in Los Angeles federal court claiming the state discriminates against religious children with disabilities and against religious schools.

The parents say their children have been diagnosed with autism and that they are forced to choose either to send them to a private religious school, as they prefer, and pay themselves for prohibitively expense therapy and special-education services, or send their children to a public school where they run into conflicts observing religious holidays and other commitments.

• From Newshub (New Zealand): “Wheelchair users fed up with paying four times more for event tickets”

Wheelchair users say they are being charged up to four times as much for events, and having to pay extra for a carers ticket at some venues.

Many in the community feel they are being discriminated against and exploited.

Football lover Jack Tauwhare says he felt deceived by the cost advertised for the recent All Whites match in Auckland.

"They promoted it as $20 a ticket for the minimum and then they tell me $80 is the cheapest ticket available for wheelchair users, which is four times the price of if you're not in a wheelchair.

"Every time I go to a concert or go to a sports event, every time. We've just had to bite the bullet and just pay it," Tauwhare said.

[…]Tauwhare said it was plain discrimination.

"We shouldn't be put into these positions where we have to pay double the price as a normal able bodied person just to be able to get into see the same same sporting event or the same concert or same entertainment as everyone else."

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

Each year on International Women’s Day, a Portland, Ore., radio station “holds the mic up to those systematically excluded from radio, 365 days a year.” From 7 a.m. to 7 p.m., all other programming is suspended to put marginalized people’s struggles into sharper focus. As part of this Amplify Women event, XRAY FM aired a conversation I recorded with three women at 11 a.m. last Wednesday, March 8. (See it on their site at Medical Motherhood: Full-Time Paid Caregiving for Parents of Disabled Children.)

In the podcast version of this week’s Medical Motherhood, you can listen to the full hour between myself and Tina Stracener, the mother of a medically fragile 17-year-old; Lisa Ledson, a registered nurse and mom to an autistic 10-year-old with cerebral palsy; and Romi Ross, a certified behavior specialist and mother of a 9-year-old with high behavior needs. All three have been working to try to pass paid parent caregiver legislation this session in the Oregon legislature. Senate Bill 91 and Senate Bill 646 are — as of this writing — waiting for a work session to be scheduled in the Senate Human Services Committee. If that doesn’t happen by March 17, the measures will die in committee without a vote.

Full disclosure: I have lobbied on behalf of these bills and my son would benefit from either of them if passed. I am also friends with Tina, Lisa and Romi — three amazing women whose stories and perspectives I’m delighted to be able share with you.

Because of the length of the podcast, there are no news briefs this week but they will be back next week. You can find a full (computer-generated) transcript here for those who need or would like to have that.

As part of our conversation, I asked all three why they thought they should be able to be paid to be their child’s caregiver and here’s what they said:

Tina Stracener

The main reason is my daughter wants it. It would be her choice to have me, as her parent, take care of her. I'm her playmate. I'm her mother at her home. She's the heart of the home and I'm the best qualified to care for her. I have 17 years of experience … trying to navigate her very complex seizure disorder. I know the nuances: What is a seizure, versus what is just a silly laugh that some people might not notice. They might see her little laughter and think it's just a laugh. And actually, I know that that's gonna snowball into a seizure that could be life-threatening. It's just the years of experience that have taught me how to navigate that.

Over the last three years of the pandemic, she has not been hospitalized not once. I credit a lot of that to — not only the care that I give — but the fact that there aren't so many people coming in and out of our home, you know, exposing her to various illnesses. This is starkly contrasted to her being hospitalized, sometimes monthly, for the first 14 years or 15 years of her life. So that’s the main reason I wanted it. It's my choice to take to care for her. I love caring for her and I want to be that for her. And I know how to play with her. And so, it just helps make the house feel more like a home.

Lisa Ledson

My personal opinion is that each child is very unique and individual. [I’ve been] an emergency department nurse for 16 years exclusively in the Portland metro area. I've seen over the years how care has changed. But the one thing I believe that has stayed true is the love of the family, especially family caregivers, and how specific and personal they get when it comes to care — and how not personal and specific I am as your ER nurse or the bedside nurse in whatever unit your kid ends up visiting in hospital.

I have twin girls, one of them is significantly disabled, she uses a wheelchair, she has a g-tube to eat with. And she has lots of seizure disorders — about five different styles of seizures. So, technically, she has epilepsy. And as a parent — that parent hat and that nurse hat get merged. And all I can think about is how tough that decision-making processes is and how specific it has to be when you're a parent of a medically fragile [child] or a child with behavioral needs like mine, who has autism as well. When I'm trying to make those decisions, I don't know how to teach those decision-making processes to others. I don't. I don't know how to do that, quite frankly, it's very challenging. So when I've had to do it — I'm training a new personal support worker for us in the home — it's lended itself to be extremely challenging. There are — just like you said, Tina, about June and her seizures — there are certain seizure styles that my daughter has that I only know them. I could try to describe them, like I do to the school staff, and it just doesn't work. They get missed. And that's very scary for me as a parent. So that would be my primary reason as to why there's just those things we know about our kids that you can't teach.

I think I'm gonna leave it at that. I have about 500 other reasons.

Romi Ross

The support for kids with high behavior support needs really does differ. There are some overlaps, of course, there is ADL [Activities of Daily Living] supports, there's medication supports. But for behavior kids, we're often predominantly talking about behavior management, which can be anything from really carefully controlling the environment and setting — every nuance, every detail — up for success, to responding to problems that arise responding to behavior, like physical aggression, or self injury, or other dangerous behaviors like that. Responding to these types of behaviors can mean using really elaborate protocols designed by the child's therapist and support team, and could include physical interventions. Often, they do include physical interventions. And then, on the extreme end of that, that can include restraints.

So when we're talking about the child's welfare, of course we want the people who are going to be using these types of interventions, we want them to be the people who have the most training, who can show up with the most love and the most connection. And, really importantly, the person with whom the child feels the most safe. Because these are potentially traumatizing situations for everybody involved. There needs to be that safe connection there. You know, it's not easy: Staying calm and nurturing when somebody is trying to hurt you. We humans have instincts, and they kick in when we're being attacked.

I work with a lot of DSPs (Direct Support Professionals) professionally, in care homes, and [they are] the most loving people and the most hardworking people. But there is an instinct that kicks in and it is hard to overcome that. It takes a long time to overcome that and to be safe.

I think that there's a connection there with parents that bypasses that — that allows you to do that. In addition to all the training that we get from, you know, the neurologists, the psychologists, the OT, the speech, the behavior therapist, all of that.

*NOTE: Typically on the Second Sunday of the month, Medical Motherhood runs our editorial cartoon Where’s Is the Manual for This?! but because of the timing of International Women’s Day, the cartoon will run a different week.

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

Toby Lunstad was an occupational therapist and manager when she realized her daughter Addilynn’s needs were significant enough that she needed to give up employment. Toby had run out of paid leave and was having to constantly correct her daughter’s hired caregivers, so she didn’t feel safe leaving Addilynn with them to go back to work.

That was three years ago and Addilynn has blossomed under the focused care of her mother.

“She is doing way better,” Toby tells Medical Motherhood, “even friends that we don’t see a lot have noticed a difference, even in her affect. She’s way less stressed out. It hasn’t been easy though.”

The family now relies entirely on Addilynn’s mechanic dad, Shawn, working long days and weekends in his auto shop. He has to make one income that can pay for the health insurance Toby gave up, as well as the rest of the bills. 

Toby is now campaigning for legislation in North Dakota that would allow parents and guardians like her to be paid for their minor child’s Medicaid in-home services. She has an email list 50 people strong and the bill, SB 2276, sailed through North Dakota’s Senate on a unanimous vote Feb. 14. Next, it has to pass the House before the legislative session is scheduled to end April 28.

North Dakota is one of two states in the nation, according to a recent study, that as of November 2020 had no paid family caregivers, the other one being Alaska. During the COVID-19 federal public health emergency, several states used Medicaid flexibilities authorized by the Trump and Biden Administrations to allow legal guardians (usually parents) to be paid providers. North Dakota was not one of them.

Toby said she started campaigning on the new legislation last September and was prepared for pushback that so far has not materialized. Mostly, says the central North Dakota resident, the response she’s gotten from state senators is: “Why isn’t this a thing; why aren’t people able to do this already?”

But, she says, the biggest hurdle remains the budget.

“They’re just really hesitant because nobody knows how much it will cost,” Toby says.

A fiscal note, presented by North Dakota’s Developmental Disabilities Division Director Tina Bay, shows an estimated annual cost of $8.1 million for 320 participants. North Dakota, with a population of about 775,000 people, has about 6,000 people on its Home and Community Based Services (HCBS) waivers. SB 2276 would allow paid family caregivers across the age spectrum, not just to minors, at a daily rate of $150.38, five days per week. School-aged children would be eligible for half-days.

That restriction frustrates Toby, who homeschools her child due to the increased incidents of seizures under the stress of public school. But she says she intends to go back to the legislature in future years to combat the reduced payment.

As many state legislatures budget based on bienniums — every two years — the projected cost to the state of the program for 2025-27 is $11.5 million, with another $12.8 million from the federal government. Since the program has an anticipated start date of July 2024, that would be the program’s first full biennium.

Toby says that is about as much state money as was transferred out of the DD division’s budget recently due to unused caregiver hours.

“Because there’s nobody to hire,” she says is the reason the hours weren’t used, “and the ones that you do get to hire are not very good most of the time.”

A study released last month in The Journal of Pediatrics shows a three-year retention rate of just 9 percent for paid in-home care providers in Colorado. In contrast, paid family providers (which has been an option in Colorado for many years) have an 82 percent retention rate. The study examined Colorado’s Certified Nursing Assistant program, rather than an attendant care program like North Dakota’s, which would not require a certification.

Toby says care provider agencies are also asking the legislature for more money this year for recruitment and retention.

“The agencies are being asked: ‘Where are you going to find the people?’ – They don’t have answers, so we’ve been trying to capitalize on that,” Toby says: “‘We are! We are the people who can be paid!’”

(Story continues below) Read more from North Dakota’s former Medicaid Director Caprice Knapp on what the state is doing with American Rescue Plan Act funds, including supports for family caregivers, in a National Academies panel discussion last June:

Every state has its own idiosyncratic blend of Medicaid waivers and North Dakota is no different. For children, it has four 1915(c) waivers, one of which serves people of all ages. According to KidsWaivers.org, all of them waive parental income. The state also has a 1915(i) program for autistic children ages 15 and younger. Toby says the eligibility criteria for the paid parent caregiver program is yet to be worked out but would be based on the child’s annual assessment.

“It will really depend on the needs of the individual,” Toby says. “Being on the autism waiver will not exclude them from potentially be able to access this service option, their level of care will determine it.”

Toby says her group — which has assistance from North Dakota’s Family Voices chapter and its Protection and Advocacy office — wanted the legislation to encompass coming changes and expansions to its waiver programs.

The state has been working to expand access to HCBS — and relocating participants away from institutionalized settings — after a recent settlement agreement with the U.S. Department of Justice. The DOJ opened the investigation in 2015 after receiving complaints from disabled adults who said they “were forced to enter, or were at serious risk of entering, nursing facilities to receive necessary services.”

Toby says it’s not unusual for North Dakota families to get turned away for services — even for significant needs — and not appeal or reapply.

“Our waiver definitely needs some improvement,” Toby says. But for the paid parent caregiver option, she hopes: “We’re not going to have to fight for this again. It’s just going to always be there.”

The next stage for SB 2276 is a March 8 hearing in the House. Forty-three of North Dakota’s 47 senators, including the bill’s sponsors, are Republican. Only 12 of the 94 representatives in the House are Democrats.  

The bill’s language is 22 lines long and defines the service parents could be paid for as “care exceeding the range of activities a legally responsible individual would ordinarily perform in the household on behalf of an individual without extraordinary medical needs, and which is necessary to assure the health and welfare of the individual and avoid institutionalization.”

“We kept it simple on purpose,” Toby says. “We don’t want to have to jump through a bunch of hoops.”

Read more: Learn about the Oregon legislature’s efforts on paid parent legislation, including my testimony in favor, in this piece from last month:

Tune in to XRAY FM radio this Wednesday at 11 a.m. to listen to an hourlong discussion on paid parent caregiver legislation in Oregon as part of their annual Amplify Women celebration. Broadcasting online or in Portland at 107.1 FM and the North Oregon Coast at 91.7 FM. Next week’s edition of Medical Motherhood will feature a recap of the discussion.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From PBS: “Why Oregon is the worst-ranked state for youth mental health”

[…]there's an organization called Mental Health America, and every year they put out annual survey ranking how states provide care to mental illness and how severe the crisis is. And Oregon, unfortunately, ranks dead last in the country as far as young people who are struggling with their mental illness and their access to care. It's the highest rate of young people in this country with one serious depressive episode. It is the third highest number of children with substance abuse disorders and ranks 42nd in the country for those children with those depressive episodes not getting care.

And so there are a bunch of reasons why this happened. A recent state audit looked at several different factors staffing shortages, poor data, and just overall lack of beds. We, in fact, in our reporting found that in the entire state, there are only 40 beds for the most acute children who need this kind of care.

And there's also this issue of Oregon being a rural state. I mean, there are several major cities, and the majority of people live in those cities, but a lot of the state lives in places where it's hours to care. Mental health officials tell us once they discharge those people, they're going back to communities where there may not be a single psychiatrist in town to help them.

[The story goes on to talk about Youthline, which is a peer messaging system that is making an impact on this crisis. Reach it at 877-968-8491 or by texting teen2teen to 839863.]

• From New Atlas: “Classroom robot helps keep kids with learning disabilities on track”

Students with learning disabilities (LD) struggle with particular skills like reading, writing, or mathematics and often require additional, individualized support to fill educational gaps. A team of researchers and experts has found that a cute little robot may help children with learning disabilities stay focused.

[…]The brainchild of scientists Dr Pouyan Ziafati and Dr Aida Nazarikhorram, QT was the first robot developed specifically as a tool to assist children with ASD [autism spectrum disorder]. It can gesture with its head and arms, display facial expressions, and speak.

[…]The study showed that the students who partook in sessions with QT engaged in fewer off-task behaviors and showed greater engagement. The students perceived the robot as friendly, intelligent, and enjoyable and would be willing to engage with QT in future sessions.

Feedback from the instructors demonstrated that, to a large degree, they found the robot’s intervention effective and helpful in maintaining the students’ focus and engagement.

“There is definitely a great potential for using robots in the public education system,” said Dr Kerstin Dautenhahn, a professor of electrical and computer engineering and an author of the study. “Overall, the findings imply that the robot has a positive effect on students.”

Further studies using QT are planned to further investigate the utility of robot-assisted learning for children with learning disabilities.

• From STAT (Opinion): “Fixing U.S. public health will require a health-systems revolution — and for physicians to take a backseat”

[…]While the clinical frameworks that characterize medical training are appropriate for the one-to-one encounters of patient care, misapplying them to the population-level problems of public health leads to a failure to effectively anticipate and address the social conditions upon which disease and disability feed. This, in turn, fuels a top heavy, reactive national health policy that prioritizes profitable medical treatment rather than cost- and life-saving prevention via community-based social services. Declining life expectancy in the U.S. — now at its lowest in nearly two decades — reflects the consequences of this policy choice.

[…]the most effective public health systems are designed and implemented from the bottom up. They see world “from below” — that is, from the most marginalized positions in a society where the obstructions to health are most apparent and oppressive. Enabling this kind of approach requires listening to, valuing, and directly involving individuals with lived experience of how and who the existing systems are failing: people who are unhoused, elderly, immunocompromised, migrant agricultural workers, racialized, those identifying as LGTBQ+, those living with histories of incarceration, and otherwise vulnerable groups. […]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

Medicaid would have paid for Katie Beckett to live her entire life in a hospital.

Her mom, Julie Beckett, had other ideas.

Not only would that have been a waste of government resources, but a poor excuse for a childhood. So Julie Beckett collected arguments and data and took her advocacy all the way to President Ronald Reagan. Within two days of the President speaking about this, administrators made an exception for Katie. Soon after, there was an option for states to create what became known as “Katie Beckett waivers,” that would allow funding for disabled children to be raised at home.

Julie Beckett died in May 2022 at the age of 72, according to her New York Times obituary. Her daughter passed away in 2012 but lived to the age of 34 — her prognosis vastly improved by living at home.

The Times obituary credits the Beckett women’s advocacy with liberating hundreds of thousands of children from the path of institutionalization.

Though she was widely regarded as one of the most significant figures in the history of the disability rights movement, Ms. Beckett insisted that she was simply looking out for her daughter, and that everything flowed from there.

“There comes a moment in parenting,” she wrote in 2017, “where you discover strength you didn’t know you had — all because your child needs you.”

There are many things I wish I could have asked Julie Beckett, but one of my biggest questions is how she felt about the confusing patchwork of Medicaid systems we now have throughout the country.

Though many states have some form of a “Katie Beckett” program, no state’s children’s services program looks the same and not all children who qualify get access. There is an entire website dedicated to the many ins and outs in each of the 50 states’ waivers as relates to children.

Complaints of over-complexity abound. Here’s a recent article from disgruntled parents in Tennessee. Some states, like Nebraska or Oklahoma, are only just now getting around to cutting down years’ long waitlists for children. Others? Aren’t even trying.

Some states give parents a set budget that they can use to direct care for their child while others make them employers of in-home caregivers. (This is also true for disabled adults or their representatives but here I’m focusing on how these programs work for kids, who always have a legal guardian directing care.)

Some states, like Colorado and now Arizona, have programs that will allow parents to be paid as their own child’s support worker.

The complexity is so great that even many of the people working in these systems don’t understand them.

In Oregon, as I have researched how to create a paid parent-caregiver program, I have heard several times that the federal government does not allow parents to be paid caregivers under our state’s waivers.

So, I asked the Centers for Medicare and Medicaid Services (CMS) what they thought. In fact, they said there are several different ways the federal government allows for this freedom.

But first. In order for you to understand their answers, I have to explain the different types of children’s services waivers. Instead of a comprehensive, rational program that applies to every American child, we have several limited, idiosyncratic solutions for various constituencies, even within the same state. There are easily hundreds of different buckets of Medicaid money for disabled children across the nation.

Let’s start with what Medicaid is. Medicaid was started in the 1960s as public health insurance for low-income Americans. What many people don’t realize today is that both Medicaid and Medicare (which is for the elderly) are under the Social Security umbrella.

On the most basic level, the change that Julie Beckett was made famous for was enabling her daughter to qualify for Medicaid even though the Becketts were not poor. (The dual-income household had, however, exhausted their private insurance and the only option for Katie would have been to live in a Medicaid-funded institution.) In Katie Beckett waivers — which were actually created and funded through a 1982 tax act — disabled children qualify based on their own resources and incomes, not that of their parents.

Soon after, Congress created Section 1915 (c) of the Social Security Act. That created what’s called Medicaid’s Home and Community Based Services (HCBS) and there are now four different types of waivers for that: Section 1915 (c), Section 1915 (i), Section 1915 (j) and Section 1915 (k). All four of those offer “self-direction options” — thus labeled because beneficiaries, rather than institutions, get to choose how they spend the Medicaid money.

If that weren’t confusing enough, there are also Section 1115 waivers that give states Medicaid money to play around with to develop pilot or experimental health care projects.

There are pros and cons to each of the above six different types of funding that can be used for disabled children’s in-home services. There are other smaller programs, too, but I’m going to stop there. (If you want to dive deep, here is a primer on HCBS.)

In my state, Oregon, we have three different 1915 (c) waivers, a 1915 (k) waiver, a 1915 (i) wavier and a 1115 waiver. We also have a 1915 (j) waiver, but ours does not apply to children.

Get all that? Great. Now you might have a chance of understanding the answers CMS gave me. First, most of Oregon’s children’s services are funded through 1915 (k) — what we call the “K-plan.”

“Medicaid self-direction authorities allow legally responsible family members to be paid providers,” a CMS spokesperson, who for some reason did not want to be identified by name, wrote to me. “Under 1915(k) of the Social Security Act (the Act), family members can be paid providers as long as they do not act as the beneficiary’s representative for 1915(k) related activities such as the person-centered planning process.”

So all four of the “self-direction” plans can allow parents to be paid providers, if states so choose.

There was a temporary change made during the pandemic’s public health emergency. The federal government loosened its restriction on the legal guardian for the child; that person could also be a paid provider.

This was already the case, however, for 1915 (c) and (i) waiver programs.

“For both 1915(c) and 1915(i) HCBS authorities, a state may allow legally responsible relatives (including parents) to be paid to provide HCBS services in extraordinary circumstances such as when another provider is unavailable,” the CMS spokesperson said. “Each state defines the extraordinary circumstances in which legally responsible individuals may become paid workers. This provision is usually used with individuals who require a provider with particular skills, such as behavioral interventions. It is also used in rural areas that have provider shortages or during emergencies such as the COVID-19 pandemic or a natural disaster.”

Some people may argue that parents shouldn’t be paid for the care of their own children, or that the childcare crisis is affecting all parents. Personally, I would agree that all U.S. parents need vastly more support and funding than they get. But it is important to note that we are not talking about subsidizing homemakers or paying parents for childcare. These are jobs with hours and wages and identified tasks that go above and beyond “ordinary” parenting. Caregiving is not the same thing as parenting.

“Even in extraordinary circumstances, for children, the parent or legally responsible relative may be paid to provide only those services in addition to what a child of the same age without a disability requires and which are necessary to assure the health and welfare of the child,” CMS said.

CMS gave me much more information on the options for states to pay family members, including parents, but it gets even more technical and I don’t want to bore you. For those interested, here is a link to the full Q&A.

The bottom line?

“…there is no federal policy that would preclude a family member from providing services they are qualified to provide,” CMS said.

So why aren’t paid parent-caregivers a standard option yet? Not just in Oregon, but throughout the country?

Personally, I see a thread through Julie Beckett’s advocacy to today. What I see — from the creation of institutions, to the rise of complex bureaucracies, all the way to the resistance to paying parents as caregivers — is a prejudice. Too many believe that parents are just too incompetent and society needs to create some sort of expensive third-party system to control the care of their disabled children.

It seems we to have to keep proving them wrong, generation after generation.

NOTE: A version of this story ran on May 29, 2022.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From California Health News via Disability Scoop: “Nursing Shortage Puts Children With Disabilities At Risk, Spurs Calls For Change”

SACRAMENTO, Calif. — Analicia Brokloff just wanted to take her daughter home. Her 2-year-old, Mila, was ready to be discharged from UC Davis Children’s Hospital in Sacramento after having a lung infection.

Mila, who has cerebral palsy, still required the care of a home nurse, as she recovered last fall from having a tracheotomy — a surgical opening in the throat to help her breath.

But there were no home nurses available. So, due to staffing shortages and cracks in the health care system — but not due to medical need — Mila had to stay in the hospital. It had been two weeks since she was well enough to go home. She’d arrived in the hospital close to two months ago, and her family and the hospital discharge planner had been searching for a home nurse the whole time.

“It was just really hard,” said Brokloff. “It feels like (children with disabilities) and their parents are falling through the cracks.”

Finding nurses to care for medically fragile children at home has historically been difficult. But since the start of the COVID-19 pandemic, the problem has worsened dramatically, according to parents of children with disabilities and home health agencies. The pandemic set off a surge in demand for nurses at hospitals, clinics and other health care facilities, and widened the compensation gap between these and lower-paid home nursing jobs. This pulled nurses away from home care. At the same time, large numbers of nurses left the profession — many due to health concerns, retirement and burnout — shrinking the overall workforce. As a result, fulfilling requests for home nurses has become close to impossible, those in the field said. That’s especially true for the more than 1 in 4 California children with special health care needs who, like Mila, are insured through the state’s public health insurance program, Medi-Cal, which typically pays nurses less than private insurance.

“It’s worse than ever, it really is,” said Dean Chalios, president and chief executive officer of the California Association for Health Services at Home.

To solve the issue, the association is calling on California’s governor and legislature to increase Medi-Cal reimbursement rates for home nurses by 40% in next fiscal year’s budget. Chalios said a rate increase would make pay for home nursing more competitive and attract people back to the field. It would also save the government money, he said, by keeping medically fragile children out of hospitals and nursing facilities. Both are more expensive than caring for children at home.[…]

• From Healthnews: “Changing Spaces for People With Disabilities: Where to Find Them?”

[…]Disabled children, adolescents, and adults — over the height and weight limits of baby changing tables — requiring help with toileting cannot use regular handicapped-accessible bathrooms. Instead, there must be a choice to stay home from public spaces, be laid down on a restroom floor to be changed by their caregiver, or leave the public place or event as soon as they need the restroom to be changed inside a vehicle or return home.

Universal changing spaces have height-adjustable, adult-size changing tables that accommodate everyone. These are necessary for public areas such as restaurants, hotels, venues, movie theaters, and zoos so that disabled individuals can have equal opportunities to engage in activities and travel.

All disabled Americans deserve a safe, private, and dignified changing space.

Several states are working to include this population segment in community activities and public spaces. According to the National Aging and Disability Transportation Center (NADTC), California, Arizona, Michigan, and Pennsylvania have enacted legislation for universal changing spaces in public spaces and accommodations. In addition, a few other states have introduced legislation to be considered by state lawmakers.[…]

• From the Deccan Chronicle: “Procter & Gamble India launches ‘Lead With Care’ for employees

HYDERABAD: Procter & Gamble India on Wednesday announced “Lead With Care” programme, which offers a holistic support to employees who are caregivers to children with disabilities and special needs.

Effective from April 1, the programme will enable employees to avail early care and treatment for children impacted by specific neurodevelopmental, cognitive, behavioral, or physical impairments. It will also include medical coverage across diagnosis, doctor consultations, treatment, cost of medicines and devices, and builds on top of the existing medical support the company extends to all its employees and their families, including employees of the LGBTQ+ community.

The Company will further facilitate specialized and trained day-care support via certified partners and shall provide an employee assistance program (EAP) available 24x7 to all employees and their families to navigate this journey.[…]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

Medical mothers wear many different hats. We are therapists and nurses and referees and dieticians and housekeepers and laundresses.

One of the many hats I wear is journalist. Another, lately, has been political activist.

Last Monday, Feb. 6, I wore that latter hat to a hearing of the Oregon Senate Committee on Human Services. The committee was hearing testimony two bills that could lead to paid parent caregivers in our state. The first, Senate Bill 646, is a broad measure, developed by Sen. Tim Knopp of Bend in partnership with parent leaders. The second, Senate Bill 91, was written by Sen. Sara Gelser Blouin of Corvallis, who has deep roots in the disability community. S.B. 91 has the most chance of moving forward this session in the Oregon Legislature. There are many things I would like to see changed in the bill, particularly the program’s restrictive design and the reporting requirements that ought to capture the full cost savings of such a program — so that it can continue long into the future.

Longtime readers of Medical Motherhood may remember that, in the first year of this publication, I wrote a lot about the economic and systemic burdens of raising disabled children.

I strongly believe that parents should be eligible for caregiving jobs for their minor disabled children. When that belief motivated me to take political action, I stopped reporting about it in this newsletter. I was unclear on the ethical implications of doing both so I tried to separate them.

I must have forgotten that I started this newsletter as a celebration and examination of the reality of being a whole human who raises disabled children — not just the inspirational part, not just the difficult part; not just the supermom part, not just the welfare mom part. Every single part.

The truth is that sometimes in advocating for our kids or meeting their needs, we sometimes have to color outside the lines. So it was that I found myself presenting to the Senate Human Services Committee on behalf of Advocates for Disability Supports, the grassroots group of motivated and intelligent parents who have become my friends as we fight for this cause.

My testimony focused on the advantages of paying parent caregivers with Medicaid funds: the quality of their care and the likelihood of savings in other areas of government. Some of it is specific to Oregon, but those of you in other states could probably find similar statistics for your state. (Honestly, this stuff is so complicated I could write about it for a month of Sundays.)

Because of the Centers for Medicare and Medicaid’s flexibility on this issue during the COVID-19 public health emergency, programs across the nation are currently trying to decide whether to permanently allow parents to be paid providers. On March 8, the Lucile Packard Foundation will host a national webinar to discuss the subject. I have talked to people in Washington, Idaho, Iowa and beyond who are trying to get new rules or legislation to allow this in their states. If you want to join the effort, reply to this newsletter or apply to join Allow Oregon’s Disabled Children to Have Paid Parent Caregivers on Facebook.

Here is a condensed version of my testimony for you, Medical Motherhood readers:

Calypso Vander Velden.

Baybeblue Campobasso.

Nic Brown.

Jake Rates.

These are the children of leaders in this grassroots effort who have died, just in the last year, as we have been fighting for paid parent caregivers. The issues our community faces daily are as real as it gets. We honor their memories by speaking their wishes for a paid parent program.

My son is one of the few hundred Oregon children who benefited significantly from the temporary emergency program. But I’m really here for dozens of people who have come to me with stories of how this program transformed their lives and the lives of their children — from surviving to thriving.

On May 11, when the federal public health emergency expires, many of them will go back to drowning and their suffering will go back to being invisible. We have to make noise while we still can.

The advantages of paying parents for the extraordinary labor they provide these extraordinary children are not theoretical anymore.

We did it.

It worked.

For the last two years, Oregon disabled children were saved from poverty and from unnecessary foster care, group home and crisis care placements. Under the care of their best-qualified caregivers, disabled children grew, stabilized, and learned new skills. Disabled children stayed out of the hospital, stayed off ventilators, stayed alive.

It worked.

This is a simple idea. It does not need to be so complicated.

[…]When considering aid to the vulnerable population of children with complex care needs, we musttake into consideration the variety and overlapping nature of different silos of government. The National Center for Complex Health and Social Needs has sharply criticized government programs for not recognizing their collective impact on the end user. They wrote: “Our health and social systems typically focus narrowly on an individual’s single need and are not designed to work together to address multiple needs, often leading to costly and avoidable care. Many causes of poor health are best addressed through non-medical interventions that require cross-sector and community collaboration.”

This is what parents do every day for their children.

[…]We believe that paying parent caregivers to provide care for minor disabled children would be cheaper for the government and more effective overall.

Foster care for I/DD children costs about $70,000/yr per case.  The 135 children in 24-hour residential homes have a total annual cost of $30.6 million, or about $24,000 per month. Providence Child Center — which has been very difficult to access lately as there are no spots, no safety net — costs the state $17,000/month or more than $5 million/year for 27 children.

[…]In the written fiscal analysis, we’ve listed many ways that a paid parent caregiver program could save money in other programs: SNAP and utility assistance, lower healthcare costs for both children and their caregivers, increased productivity and better trajectories, better K-12 outcomes and an economic generator with the 2:1 matching dollars. Somehow this state can afford money going every which way in the NAME of our kids but not to the people who are ACTUALLY doing the work.

[…]It is not a mystery why these families are impoverished.

There are only so many hours in a day.

And our children need help…

…that only we are providing.

You can watch Advocates for Disability Supports’ full presentation at on the committee’s website, starting at 24 minutes.

I highly recommend watching the entire hearing for amazing testimony from many wonderful families. Oregon’s temporary paid parent program has been operating for two years and participants said they have seen incredible changes in their children.

And if you want to hear even more, check out the interview I did this week with Lisa Tschudi for her Love Doesn’t Pay the Bills podcast. It will be out on Tuesday.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Disability News Service: “Neurodivergent parents ‘often blamed for behaviours of autistic children’, says report”

Neurodivergent parents and single mothers are frequently blamed for the behaviours of their autistic children, and even subjected to safeguarding inquiries, when they try to seek support from services, according to new research.

The report, based on a survey of more than 1,000 families of autistic children, shows a “very real fear” among neurodivergent parents about disclosing to social services and other professionals that they are themselves autistic.

The findings suggest that safeguarding procedures, which can even lead to the child being placed in care, or a criminal investigation into the family, are more frequently being taken against lone mothers and neurodivergent parents than other parents surveyed.

Some of the parents who took part in the survey said their children had died while in inappropriate placements.

The authors say the blaming of parents for the difficulties their children are experiencing at home or school is a “widespread phenomenon” and appears to be “a systematic way of dealing with parents seeking support” from school staff.

They say it has created “a climate of real fear among parent carers”.

The report, Parental Blame and the Pathological Demand Avoidance Profile of Autism, focuses on the experiences of parents with autistic children who are believed to have pathological demand avoidance (PDA), which “presents as an anxiety-driven extreme avoidance of everyday demands, and a need for control which permeates all aspects of daily life.”[…]

• From The Virginian-Pilot: “Proposal to help Virginia families afford supplies for sick, disabled children faces uncertain fate in General Assembly”

A proposal to have the state help parents afford medical supplies such as breathing tubes and specialized formula failed to get enough support in House of Delegates budget talks, but was supported in the Senate.

The budget amendment proposed in the House and the Senate would have allocated $21 million starting in fiscal year 2024 to the Virginia Department of Medical Assistance Services to fully reimburse families for the medical equipment their children need.

[…]Families in such situations are basically trained to run an intensive care unit out of their home, according to Michael O’Brien, a respiratory therapist and pediatric home ventilator program coordinator for the University of Virginia Children’s Hospital. He saidparents of these medically fragile children face many difficulties, such as the complexity of care which exacerbates the already present issue of a medical staff shortage.

“It’s harder for families to deliver the care in the way they were taught because they don’t have the supplies that they need,” he said.

The supply chain tangle caused by the pandemic has also reverberated into these homes, as required materials are used for longer then intended, according to O’Brien. This also makes the materials more expensive for families and for the durable medical equipment companies that are providing them at a loss because their reimbursements haven’t changed either, he said.

However, providers prescribe treatments as they do in order to keep people healthy and in outpatient care.[…]

• From Youth Today (opinion): “A state is being sued for warehousing children with disabilities in foster care”

Late last year, the Disability Rights North Carolina and the North Carolina chapter of the NAACP filed a class action suit against North Carolina Department of Health and Human Services Secretary Kody Kinsley, seeking to end discrimination regarding children with disabilities who are placed in foster care (as wards of the state), and who are then unnecessarily segregated from their home communities. 

As a result, they are often isolated in heavily restrictive and clinically inappropriate institutional placements called psychiatric residential treatment facilities (PRTFs). This is not the first such class action. Ad litem attorneys (and others standing as “next friends”) to children with disabilities relegated to PTRFs all over the country are seeking similar relief.

[…]Some PTRFs arguably take children who have already been traumatized and traumatize them further, by preventing them from interacting with peers outside of the system, by forcing them into on-campus schools, by failing to allow them privacy, and by subjecting them to inflexible rules, rather than creating plans geared to meeting the individual needs of each child. Some PTRFS use physical restraints, emotional blackmail, and psychopharmacological restraints on children with disabilities.

What can be done for these children? The lawsuit argues that DHHS at the state and local levels must be held accountable. While safety of social workers is an understandable concern, the welfare of children with disabilities is of paramount importance.  Social workers deserve to feel safe in their work environments in the balance of equities.  Children with disabilities should not be warehoused; every effort should be made to assure that children with disabilities have the benefit of a nurturing, integrated, safe living conditions. […]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

Introducing: Clarissa Kent!

Editorial cartoonist Lenore Eklund and I were laughing a while back about a reverse superhero: One who dresses in street clothes to do heroic life-saving activities by day but then on rare occasions, dresses up in a leotard to do… well, absolutely nothing by herself in bed with takeout! That’s how this medical motherhood life feels sometimes.

I love what Lenore has done with the concept and look forward to more in the supermama Disability Defender series. To truth, justice and the medical motherhood way!

The second Sunday of every month Medical Motherhood publishes Where Is the Manual for This?!, an editorial cartoon by Lenore Eklund.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From The New York Times: “How Educators Secretly Remove Students With Disabilities From School”

[Roseberg, Oregon teen] Dakotah [LaVigne]’s tumultuous educational journey has been marked by a series of tactics, known as informal removals, that schools secretly and sometimes illegally use to remove challenging students with disabilities from class. The removals — which can include repeated dismissals in the middle of the day or shortening students’ education to a few hours a week — are often in violation of federal civil rights protections for those with disabilities.

In a report last year, the National Disability Rights Network, a national nonprofit established by Congress more than four decades ago, found informal removals occurring hundreds and perhaps thousands of times per year as “off-the-book suspensions.” The report said the removals also included “transfers to nowhere,” when students are involuntarily sent to programs that do not exist.

The removals largely escape scrutiny because schools are not required to report them in the same manner as formal suspensions and expulsions, making them difficult to track and their impact hard to measure.

But interviews with families, educators and experts — as well as a New York Times review of school emails, special education records and other documents — suggest that informal removals are pernicious practices that harm some of the nation’s most vulnerable children. Students are left academically stifled and socially marginalized. Their families often end up demoralized and desperate.

“The reality is that there are children in this country who are still considered of insufficient quality to go to school,” said Diane Smith Howard, a lawyer with the National Disability Rights Network. “This would never be deemed acceptable for students without disabilities.”

[…]This week Ms. LaVigne, who is now connected with a group of attorneys, testified to the Oregon state legislature in support of a bill that would limit the use of abbreviated school days in the state. It is one of several efforts in Oregon, including a closely watched class-action lawsuit, to curb or eliminate the practice.

“It might not help Dakotah,” Ms. LaVigne said of her testimony. “But hopefully it will do something for kids in the future.”

• From KGW News Channel 8: “Parents fight to make Oregon's paid caregiver program permanent”

SALEM, Ore. — A group of Oregon parents are fighting to keep a pandemic program in place permanently, calling it a lifeline for their children and their families. 

During the federal public health emergency (PHE) that began at the start of the COVID-19 pandemic, parents of children with serious disabilities and medical needs could be their child's caregiver. With the PHE set to expire in May, parents who have benefited from this temporary exception are fighting to create a permanent program within the state. 

When the pandemic hit, many things changed for people including the family of Gabriel Triplett. 

"I am a dad of a 10-year-old, awesome, disabled boy," he said. "[During the pandemic] it just became extremely unsafe for anyone to allow outsiders in their home, let alone for the most medically fragile kids, so we didn't."

His son, Oscar, qualifies for disability services through Medicaid, including in-home hours staffed by a support worker. Under the PHE, his parents could fill that role. 

"The red tape was allowed to fall away and his mom was allowed to be paid to be his caregiver," Triplett said, "And since that happened, my son has not been admitted to the hospital... and being admitted to the hospital was a common thing for us before this program."

Dozens of parents shared similar stories and hope to fund a permanent paid parent caregiver program, citing better, more personalized care on top of a severe lack of support workers; a shortage made worse during the pandemic. This week, many brought those experiences to a committee hearing in Salem. […]

Note: I am a member of Advocates for Disability Supports, the group pushing for a paid parent caregiver program in Oregon and I also testified at this hearing. More on that soon!

• From Disability Scoop: “Biden Renews Calls To Invest In Services For People With Disabilities”

President Joe Biden used his State of the Union address to double down on his plan to reinvigorate the nation’s home and community-based services system.

During the speech this week, Biden called on Congress to invest in services that allow people with disabilities to receive care in their homes.

[…]Last month, a group of federal lawmakers sought to revive [an earlier] proposal by introducing a bill known as the “Better Care Better Jobs Act” that would provide states the opportunity for a permanent 10 percentage point increase in federal Medicaid matching funds for home and community-based services.

The push to invest in home and community-based services comes as disability service providers continue to struggle to attract and retain direct support professionals, a challenge exacerbated by the COVID-19 pandemic. A survey last fall of providers nationwide found that the vast majority are turning away new referrals and have discontinued programs and services.

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

This month’s edition of PDX Parent has my feature on Oregon’s radical new program to eliminate suspensions and expulsions from preschools and day cares by 2026.

The Suspension and Expulsion Prevention Program in the soon-to-be-created Oregon Department of Early Learning and Care is gearing up to provide the training, research, supports and funding that early educators will need to stop the practice.

Before the ban on suspensions and expulsions goes into effect, the state plans to conduct three years of training and support to the state’s early childhood care providers. This includes what [Professional Learning System Director Jon] Reeves calls “deep engagement” with 370 providers through the use of early childhood mental health consultants as well as a “warmline” phone consultation service. Suspensions and expulsions will still be allowed prior to 2026, but the licensed child care center will be required to access the help before doing so. 

The supports are still taking shape but — in addition to the warmline and consultants — could include referrals; training materials; and even transition planning if the parties mutually agree that a different placement would be more appropriate. (Currently, the state is still coming up with a framework for when families and providers do not agree.)

“The idea behind a transition plan is that the transition decision is made collaboratively, with the support of technical assistance consultants, and that the process is facilitated in a manner that meets the needs of the child, family, and provider,” said Oregon Department of Education spokeswoman Marion Suitor Barnes in a statement. 

Suitor Barnes also said that the program is interested in hearing from the community on the coming changes. Between January and June, there will be opportunities for parents to be on advisory committees and submit testimony on different aspects of the program. Trauma Informed Oregon, a group from Portland State University (PSU), will select the advisory committee members. (To hear about these opportunities, sign up for the newsletter at OregonEarlyLearning.com.)

What about children who are never accepted into preschool or day care?

During research last fall on this new program, I asked around in my community for what folks thought about the idea and whether it would have helped when their children were younger. Unfortunately, I heard a lot of bitterness from parents who said their children with complex needs were refused entry to day care and preschool programs. Oregon’s new suspension and expulsion rules don’t cover those cases. I explain more in a sidebar to the article:

However, a child care business refusing service to a child based on their disability is technically already illegal under the Americans with Disabilities Act. 

The 1990 federal law says that any privately run child care center cannot exclude children with disabilities from their program, unless the child is considered a “direct threat” to the health and safety of others, or their needs would require a “fundamental alteration” of the program. 

“Now, clearly the practice may still be occurring,” acknowledges Oregon Department of Education spokeswoman Marion Suitor Barnes, “which speaks to the need for additional training and technical assistance for early care and education providers to ensure they have the confidence and competence to meet the needs of any child who comes to their door.”

One thing I don’t mention in the article is that I worry that such a program might actually make it more likely that day cares and preschools refuse to take a chance on a child with complex medical or behavioral needs because they will be “stuck” with them. We don’t like to think that child care providers could think that way about children. But being on the receiving end of a denial for service based on a lack of potty training, I may be more pessimistic than the folks working hard to give Oregon’s early educators the tools they need to successfully take on those challenges.

Read the full version at PDXParent.com or see copies delivered around the Portland area.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From the Daily Press (Virginia) via the Union-Bulletin: “Experts say ‘missteps’ were likely in how school addressed special needs of Richneck student”

When first grade teacher Abigail Zwerner was shot by her 6-year-old student in the middle of a lesson on Jan. 6, it left the Newport News community — and the nation — in shock.

In the wake of that shooting at Richneck Elementary, much has been said about the heightened student behavior problems Newport News schools have experienced in the past several years. Teachers and community members have lamented the lack of administrative support in dealing with and disciplining students for disruptive and dangerous behaviors.

But special education advocates across the state say it’s also important to note that the school division likely failed to provide the 6-year-old student the supports and services he needed up to that point.

An attorney for the child’s family said the boy has “an acute disability,” and that, as part of a specialized “care plan,” his parents had been attending school with him every day until the week of the shooting.

[…]“This is a situation where it sounds like the needs of this particular student were so significant, that there probably were potentially some mental health concerns that needed to be addressed,” [special education expert Kevin] Sutherland said. He added that the child likely needed “wraparound” services, which extend beyond the classroom and can include things like counseling and other supports.

He said the whole situation is disheartening.

“I feel sad for the teacher, I feel sad for the child’s classmates that had to see this,” Sutherland said. “And we have to keep in mind, it’s a 6-year-old child. I feel sad for the child and the family, and I hope that something positive comes out of this situation that can help teachers and kids and families in the future to avoid another incident like this.”

• From 12News.com (Arizona): “Families fight to save program helping Arizona kids with disabilities and their parents”

PHOENIX — Valley families are pleading with Arizona leaders to extend a program which empowers them to care for their children with disabilities. The Parents as Paid Caregivers Program is at risk of being shut down. It pays parents to take care of their children with disabilities. 

The program started at the beginning of the pandemic when paid providers were hard to find. Involved parents said those same providers are still hard to find now. 

[…]“Having the flexibility to be paid to provide the level of care that is approved for by the state in times when caregivers aren’t available really supports us as a family," [parent Brandi] Coon said. 

She is part of the Arizona Parents as Paid Caregivers Program. It trains and pays parents to do therapies and other supports with their children, just like a provider. It's at risk of shut down in March of 2024. Coon said that will present a big hardship for her family. 

“We would probably be scrambling like most of the families in the state to find a care provider," Coon said. "Prior to the pandemic, care providers were very difficult to find and with the pandemic and the economic situation it’s just gotten harder.”

Jon Meyers is Executive Director of the Arizona Developmental Disabilities Planning Council. He's been involved in talks about whether or not this funding can be effective, long-term. 

“The overwhelming feeling of parents I’ve interacted with is that the program should be extended and it should be made permanent in Arizona," Meyers said. "That’s not a universal feeling. There are some parents who for various reasons would not be able to continue providing these services to their children.” […]

• From The Jordan Times: “30 inclusive schools to be completed by 2025”

AMMAN, [Jordan] — The Ministry of Education will begin implementing its plan to construct 30 inclusive schools for children with disabilities in 2023, according to Director of the International Buildings and Projects Department at the Ministry of Education Ibrahim Samamah.

The project, funded by the US Agency for International Development (USAID), also involves constructing 30 accessible buildings for schools which operate in rented spaces that “don’t provide students with a proper educational environment”, he told Al Mamlaka TV last Wednesday. 

There are roughly 770 public schools with rented buildings, in which 127,351 students are enrolled, according to Samamah. 

The construction of the first six inclusive schools will begin between February and May of 2023 in Zarqa, Irbid and Amman, he said, adding that persons with disabilities (PWD) will make up 11 per cent of the total number of students in each one. 

[…the Higher Council for the Rights of Persons with Disabilities (HCD) Spokesperson Rafat] Zitawi also pointed out that the 2015 General Population and Housing Census shows that around 11 per cent of the total population in Jordan aged 5 and above have disabilities.

However, “the overwhelming majority of people with disabilities, 79 per cent, of school age don’t receive any form of education”, he said. […]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

That’s all.

Thanks for asking and for the love. It’s just so hard. All the time. Forever.”

That’s how I ended a text exchange with a friend this week, another medical mama. I was explaining another hard week in what has been a series of hard weeks lately.

Of course, I meant it as hyperbole, but that is kinda how it feels sometimes caregiving for a child with lifelong complex disabilities.

So hard.

All the time.

Forever….

*

It’s only as I’m approaching middle age that I have found a sustainable exercise routine. I don’t like to lift weights. I don’t like to play sports. I don’t like to run.

It turns out: I do enjoy walking, especially in the woods. It’s a reset button for me and a chance to decompress from being in the house all the time.

I’m still a delicate flower, though, so when I got an opportunity that particularly tough day to walk and it was raining, I almost changed my mind.

But the dark clouds matched my dark mood.

Besides, I told myself. Haven’t I read somewhere that trauma can be processed by grounding yourself in your body? What better way to feel where your body starts and stops than with tiny pin pricks of rain. So I go out, into the world.

*

There are other people walking in the rain.

This surprises me for some reason. I didn’t think anyone else would be out here.

There aren’t as many people as when the sun is shining, but they’re here. Other people, soaked in droplets, eyes to the ground.

Rain-walking people are different than sun-walkers. They don’t smile or wave. They do nod, sometimes.

As I walk, I think about the essay “Welcome to Holland.” A well-intentioned and popular piece by the mother of a child with Down syndrome, the essay is often given to new mothers of disabled children to let them know it will be OK. Maybe they thought motherhood was going to be a certain way — like a trip to Italy, reads the essay — but it turns out they landed in Holland and even though it’s different and unexpected, it’s still beautiful.

“Welcome to Holland” never resonated with me.

There are a lot of different types of disabilities, so maybe that’s why. There are many ways in which something that society currently considers a disability would not be that big of a deal if people were just a little more open and accepting, a little more forward-thinking, a little more inclusive with their planning.

But I reject the idea that all parts of the umbrella of disability are that way. There are serious medical challenges, massively traumatic events and hard, physical labor that accompany many disabilities, even in childhood. This is what I hear from disabled people themselves as well as other caregivers, like me.

That is different than taking a vacation in an unexpected place. It’s not like Holland.

In fact, I realize, it’s more like walking in the rain. It’s not comfortable. It’s not exciting. You get your clothes dirty. The brights are not as bright. And the darks are darker.

But there is certainly beauty in it. Yes, there are really special parts of this experience. You get to see a part of life that you never would have otherwise. The smells are different. The sounds are different. The gear you need is different. The people you meet are different.

I’m not going to sugarcoat it. I wouldn’t try to tell houseless people that they should just shift their perspective on living outside in the rain.

But some days it is nice to walk in the rain. And — though you may not have known it before — there are a lot of other people out here, too.

Knowing them makes all the difference.

A version of today’s column ran on Oct. 24, 2021. Medical Motherhood issues older than seven months are available to paid subscribers only. Upgrade your subscription:

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Barron’s: “Family Caregivers Go Unpaid. Now, States Are Giving Them Grants.”

[…]The number of family caregivers is rising, and all that unpaid work is taking a physical and financial toll on them, according to the 2020 Caregiving in the U.S. report, published by the AARP and National Alliance for Caregiving. The study found that 21.3% of the population provided care for an adult or a disabled child in 2020, up from 18.2% in 2015.

The average caregiver provides 24 hours of care a week, according to the report, and that workload is affecting their health and finances. The report found that 23% of caregivers say their own health has suffered as a result of their caregiving. Similarly, 45% say their caregiving hurts their finances, with 28% having stopped saving and 23% having taken on more debt, according to the report. […]

• From Richmond.com: “Parents expand class-action suit, claim state worked to deny rights of disabled students”

Plaintiffs in a class-action lawsuit against the Virginia Department of Education broadened the scope of their case to allege active involvement of the state education department in denying students with disabilities access to educational services that are guaranteed to them under federal law.

The class-action suit filed in Fairfax County in September challenges the state over the implementation of the Individuals with Disabilities Education Act, asserting that in recent decades hearing officers rarely sided with parents who challenge school plans for how to educate their children. The IDEA, passed in 1975, ensures that students with disabilities receive a free and appropriate public education.

Parents, teachers and hearing officers across the state who heard about the case reached out to the plaintiffs following the initial filing to share their stories.

“It was much worse than any of us had expected,” said lead plaintiff Trevor Chaplick, a Fairfax County resident. “We were originally focused on a due-process hearing system that was defective, which was bad enough. But what we’ve been learning is that the entire system, from end to end, from start to finish, is systemically defective, and in violation of (federal disability law).” […]

• From WheelchairTravel.org: “Ranking the Best and Worst U.S. Airlines of 2022 for Wheelchair Users”

[…]Delta Air Lines earned the top honors and the 2022 title of best U.S. airline for wheelchair users, with Southwest and United rounding out the top three.

JetBlue ranked as the worst carrier for disabled passengers, due in large part to its troubling pattern of mishandling wheelchairs — it did so more than 5% of the time, while the industry average is just 1.55%. The carrier’s disabled passengers also submit complaints directly to the DOT at an exceedingly high rate, more than 5 times as often as Delta and Southwest customers based on DOT data.

[…]Proper handling of personal mobility equipment continues to be the greatest opportunity for improvement, even among carriers that are performing above average. Delta’s average rate of damaged and delayed wheelchairs is low at 0.83%, but that still amounted to more than 1,600 mobility devices impacted during the 12-month period covered by this analysis. The disabled passengers who were left to pick up the pieces of their damaged, delayed or destroyed wheelchairs deserve better.

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

While the details of the case are incredibly distressing — such as that he started the acts when one victim was just 6, and that the abuse went on from January 2016 to May 2020 — what may be most horrific is how rare it is that the abuser of disabled children was caught and convicted.

In 2018, National Public Radio published a series of reports analyzing U.S. Department of Justice data to find that people with intellectual disabilities were seven times more likely to be victims of sexual abuse and assault. The real figure, reporter Joe Shapiro noted, is likely to be much higher as their data did not include group homes (like the one Rodriguez worked at) nor unreported crimes. According to the Disability Justice Resource Center, just 3 percent of sexual abuses involving people with developmental disabilities are ever reported.

Medical mama and Executive Director of Voices of Change 2018 Nicole Moehring says she didn’t understand the statistics at all — until her children became part of them. It has now become her mission, through her nonprofit, to educate families and the public on the particular vulnerabilities that disabled children have to sexual abuse and exploitation.

“I wanted to turn my pain into purpose,” Moehring said, “so, God willing, another family doesn’t have to go through this.”

*

The nightmare started almost exactly seven years ago. After what she thought would be a routine discussion of “stranger danger” and keeping bathing suit areas private, Moehring’s son, who is autistic and has Fragile X Syndrome, reported in graphic detail acts that he said happened with a family member.

“There was no doubt in my mind in those beginning moments that he was being honest and telling the truth,” Moehring said. She asked advice for what to do with the revelations to someone who turned out to be a mandatory reporter and an investigation ensued. But Moehring’s son was not believed by authorities and the state of Ohio, where she still lives, did not find the case credible enough to go to court.

“He was still allowed to see the perpetrator and there was nothing I could do. Nothing I could do,” she said. “I could be held in contempt of court.”

The ensuing years were difficult for mother and son. Evan began to have unexplainable episodes of extreme behavior, lasting from a couple minutes up to four hours, she said.

In June 2018, tragedy struck again but this time it was Moehring’s daughter. The teenager disclosed that a 19-year-old sexually assaulted her at a party.

“I reported it,” Moehring said. “The process from that phone call all the way to the end was completely and utterly different” from the one she experienced with her son.

Moehring said her daughter, Maci, received compassionate care and, ultimately, justice. While the mother acknowledged that could be due to other elements of the case and a different jurisdiction than her son’s allegations, she ultimately sees it as ableism inherent in the system.

That summer, as her daughter’s case progressed, Evan again reported that he was still being molested and pictures were being taken and put on the internet. Moehring called authorities again and she said their attitude was: “What do you want us to do?”

From August 2018 to April 2019, Moehring fought for a search warrant in her son’s case. Evan had to endure three different forensic interviews all together, she said. Too many. Moehring said the claims were eventually substantiated but there wasn’t enough evidence for a criminal prosecution. Her son has not seen his alleged perpetrator for five years but still attends weekly therapy.

“It’s not just a light switch and everything just turns out fine (once perpetrators are caught),” Moehring said. “It’s not. It’s never going to be fine because they were violated.”

*

Moehring says disabled children and adults are especially at risk because of their dependence on others, potential cognitive differences and lack of education to know what is abuse or what to do about it.

“We have to end the stigma,” she said. “It’s an epidemic because people are pushing it under the rug.”

Voices of Change 2018 is partnering with law enforcement agencies to create localized binders of resources for sexual assault focusing on cases with I/DD so that families don’t spend hours searching for information in the aftermath of an attack or disclosure.

Starting this year, Voices of Change 2018 also plans to release a series of books called Evan Says, to teach bodily autonomy, consent and other core prevention concepts to children with I/DD.

“All of those different safety techniques, but taught in a way through these books, illustrations and simplistic words so that a child like my son would be able to understand it,” Moehring said.

In the back of every book will also be a parent guide with information on how to conduct open dialogues with children. Moehring said that is key to uncovering or preventing potential abuse.

On a societal level, Moehring sees change in how some law enforcement departments are learning how to competently interview people with intellectual disabilities. She said a new training for forensic interviewers from Tennessee-based Modell Consulting Group even had methods for interviewing nonverbal victims.

“We need more rights for individuals with disabilities because they don’t have a voice,” Moehring said, noting that since being outspoken on the issue she has heard from dozens of people whose children have experienced sexual abuse. “They are just being brushed under the rug. More needs to be done.”

With higher than average incident rates in the disability community, at the very least the system should not add to the burden.

“My son deserved what my daughter got and he didn’t have that,” Moehring said.

Nicole Moehring’s top tips for keeping your child safe:

*        Trust your gut. If a situation or a person doesn’t feel right, follow your instincts.

*        Do extra screening of care workers. Do background checks, check references, conduct trial periods.

*       Consider purchasing a nanny cam.

*        Insist on open door policies for therapies and school settings.

*        Engage in conversations at your child’s level on the topic.

*        Educate yourself on the latest science. In addition to the resources at Voices of Change 2018, there’s also Seattle-based WorthTheConversation.com, which focuses on resources for kids with Down syndrome. Other credible sources tend to end with .edu, or .gov.

*        Don’t force your kids to hug people. Honor their right to consent.

*        If your child does disclose something, ask questions – don’t offer words as words that didn’t come from them could later be used to nullify a case.

*        Report it. While it is a serious accusation to make, if you have reason to believe abuse has occurred, err on the side of reporting it to authorities so that there can be a proper investigation. Let authorities know you believe the child and let the child know they’re not in trouble.

What if there were a weekly news source just for people raising disabled children? Medical Motherhood is just such a publication from me, a former newspaper reporter. Never any ads, entirely reader supported. Become a free or paid subscriber:

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From the Associated Press via Now This News: “Deaf Student’s Lawsuit at Center of Supreme Court Case”

The Supreme Court on Wednesday [heard] a case that could make it more difficult for students with disabilities to resolve problems quickly when they're not getting needed assistance in public schools.

The question for the justices involves a federal law that guarantees disabled students an education specific to their needs.

Lawyers for Miguel Luna Perez, a deaf student who attended public school in Sturgis, Michigan, said that for more than a decade the school system failed to provide him with a qualified sign language interpreter and misled his parents into believing he was on track to earn his high school diploma. Just before graduation, however, his family was told he qualified only for a “certificate of completion," not a diploma.

His family responded by pursuing claims under two laws, the broad Americans with Disabilities Act, which prohibits discrimination against disabled people, and the Individuals with Disabilities Education Act. The IDEA guarantees children with disabilities a free public education that is tailored to their specific needs.

Perez's family and the school district ultimately settled the IDEA claims. The school district agreed to pay for extra schooling and sign language instruction for Perez and his family, among other things. The family then went to federal court and, under the ADA, sought monetary damages, which aren't available under the IDEA.

Lower courts, however, said that to sue under the ADA Perez should not have agreed to a settlement.

[The high court is expected to issue its decision in Perez v. Sturgis Public Schools, 21-887, before the summer.]

• From NBC Connecticut: “Video of Woodstock Academy Siblings Reacting to Harvard Acceptance Goes Viral”

[…]Matthew and Magdalena's mom was recording when the twins found out about Matthew's acceptance to Harvard. The video of them reacting has reached millions.

"No matter what your ability is, you can achieve what you want to in life," Matthew said. "You can overcome anything that you want to."

Matthew's teachers said he is one of the hardest working students at the school. They were not surprised that a student of his caliber would receive an acceptance to an Ivy league school.

“He has never given up. I think that says so much about his character. It says so much about his family’s character. He was taught from a young age that if you want to succeed, you have to overcome and you can not give up. That’s the biggest message here," said Sara Dziedzic, one of Matthew's teachers.

[…]Matthew's inspiration to attend Harvard came from his doctors at Boston Children's Hospital. Following in his parents' footsteps, Matthew plans on pursuing a career in medicine.

• From Stand Together (nonprofit): “The need to care: How Ursula Newell Davis is challenging Louisiana certificate of need laws to help those who need respite care”

Ursula Newell-Davis, a veteran social worker from New Orleans, is suing the state of Louisiana in federal court over a policy that makes it hard for people to provide and access respite care for children with special needs.

[…]“This is why I wanted to do this,” Ursula said. “I have a son with special needs so it’s personal for me. I gave statistics on the crime, how having respite after school will help crime rates drop, how my background as a health social worker fit with respite. I made it clear this was the only license I wanted.”

Determined to bring awareness and change to broken policies, on January 12, 2021, she filed a federal lawsuit against the state of Louisiana challenging its Facility Need Review law.

On the day of her deposition, she was shocked to learn just how little the state’s own lawmakers understood about the law themselves.

“The state attorney’s office kept referring to special needs as those who were elderly, or who had Down syndrome,” Ursula said. “They didn’t realize that special needs encompasses anyone with a special need.”

[…]The laws Ursula is fighting to change are not unique to Louisiana. “Certificate of need” laws are still active in 35 states. They prevent hospitals from being built, block medical facilities from receiving equipment, and prevent professionals from delivering needed care.

“The state of Louisiana will not allow me to open and become a respite provider,” Ursula said. “I don’t think the state has a right to determine my success or failure rate. Let me try.”

As she continues her mission to change the FNR laws in Louisiana, Ursula has a message for anyone who’s listening:

“Let’s repeal this. I didn’t come here to play — I came here to make a difference.”

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

Life is just too darn complex.

I say this a lot, but it’s true. Especially for those of us raising disabled children, the web of rules, restrictions and justifications we have to crawl through can often be downright suffocating.

Wouldn’t it be great if you could just have a robot do all that for you?

Well, an all-powerful solution may still be a ways off but ChatGPT may be the next best thing. For those who haven’t heard about the artificial intelligence (AI) program taking the world by storm, this is a free website that anyone can use to generate schedules, recipes, essays, emails, just about anything. The interface feels just like chatting with a human. You simply ask it questions and converse or make corrections.

The writing it produces is shockingly human-like — which is certainly causing concern about the potential for plagiarism, fraud and realistic fake news — but I think it can also be used for good. I can’t think of a greater good than snipping the strings of the web that ensnares disability families so that they can spend more time on the stuff that really matters: their kids.

Some caveats before we get started. Chat GPT is owned by OpenAI, which is a private company that uses open source code. There is a risk that your account could be hacked and OpenAI does plan to monetize its currently free tool. You should use discretion about what you put in to ChatGPT and how much you trust what comes out of it. Also, it is in high demand, so save any conversations you want to keep with it in a separate document and you may have to reload your conversation if it has an error.

After I made the following list, I asked ChatGPT itself how it can help and it generated the following. This is an example of what it can do.

Pretty cool, huh? Ok, without further ado, here are eight human-generated ideas for how to use ChatGPT to simplify the complexities of medical parenthood. Just remember: always read and edit what it produces to make sure that it is true and what you really mean to say.

* Write a nicer email to your kid’s teacher. Ok, we’ve all been there. You found out something happened at school and you are livid about it. Or, perhaps more often, something that was on your child’s Individual Education Plan didn’t happen and you are livid about it. The first draft you want to dash off is not going to build any relationships and — if that’s where you still need to be to advocate for your child — you might need help getting to the point with a little more grace. ChatGPT can take your expletive-ridden tirade and turn it into a pleasant but firm request and opportunity for partnership.

* Figure out what to cook for dinner with what you have — even for special diets. After Christmas, we still had a lot of ham. So I asked Chat GPT for ideas of things to make with ham that were still healthy but didn’t have too many vegetables as the people I live with are not big fans. The five ideas it came up with would have been yummy to me but one eater is gluten-free and my family prefers Asian cooking so I followed up with that request. Chat GPT gave me more suggestions and then, when I asked for it, the recipe for a simple fried rice dish that was a big hit. This all took seconds. That saved me time, money and a headache.

* Decide what to do this weekend, even for kids with mobility or other challenges. Though I vastly prefer my account of fun and accessible things to do in Portland, as it was more thorough and didn’t include a permanently closed site like the ChatGPT list did, it is remarkable how fast it came up with ideas of places to go with kids in wheelchairs. It does not know current events, but it is good at generating ideas within the parameters you give it.

* Figure out what that Latin word means in your child’s medical records. Yes, we all know the dangers of trusting Dr. Google, but with even medical students using ChatGPT to learn (and cheat), it does seem like a good way to get some information before your next appointment with an expert. I would also say that it might be a good way to write up a short summary of your child’s medical history from notes — as our complex kiddos always seem to need — but because I don’t know where the information goes or what might be done with it, I would caution against providing it a full list of diagnoses. It’s important for us to keep control of our children’s sensitive data in this brave new world….

* Figure out what that document really says. ChatGPT can help interpret bureaucratese for you. Say you have a document like oh… say… the expenditure guidelines for the Medicaid waiver that your child is on. You can send Chat GPT the link to it and ask it to tell you what it says in plain English, which it will do. Then you can ask follow up questions, like “will it pay for a swing that my child needs” and it will give you a fairly reasonable answer of why it might and why it might not. You could also ask what it will pay for and it will give you a list of examples and requirements. Keep asking questions to drill down into what you need. Is this better than a knowledgable and skilled human case worker who wants to help navigate you through the system? Absolutely not. But it is very helpful for learning more about the system, just in case you don’t have one of those.

* Help you write the parent input section for an IEP. Again, use discretion about what details you provide the robot. You can simply ask for an example parent input section. But, ChatGPT did tell me that it does not have the ability to collect or store information typed in the chat box. If you feel comfortable offering information about the types of diagnoses, challenges and strengths your child has, you’ll be amazed at how well written its accommodation requests are. Then, you can tailor the outline to your own child’s situation and needs.

* Coordinate a complex schedule. While ChatGPT cannot integrate with external tools like your Google calendar (yet), you can give it a list of complicated information and ask it to generate a schedule for you. Let’s say you have five different caregivers and they all have different availability and your child has therapy appointments every other Monday that a caregiver can’t take them to — put all that information into ChatGPT and watch as your headache melts away.

* Tell it your trauma story and maybe gain catharsis. In a nutshell, the trauma response means that we get stuck in a certain story or thought pattern, unable to see alternatives or a different conclusion. So, we repeat the same cycle over and over — reacting the same way to similar situations. One thing I tried with ChatGPT was to tell it about 200 words of my story and ask how the story ends. (I’m not the only one with this idea. A therapy provider tried it too.) It came up with a nice Hallmark movie-esque conclusion that I found very cheesy but also very charming. Who knows how my story will actually end. But I do like the future that ChatGPT described of a best-selling author who uses her experience to lift up and validate other families’ experiences while helping her own children succeed with an empowered relationship with their disabilities. Who knows? Maybe now that I can imagine it, it will be so….

Anyway, this is just the beginning. ChatGPT is a “language model AI” and so has limited capabilities. But a full AI will be able to integrate with other tools, like even schedule appointments for you!

A final tip: the thing you write to an AI is called a “prompt.” You can get better results the more information you give it and if you tell it what role you want it to play (“act as if you are a ______”).

What do you think? Will you try ChatGPT? Or does the technology freak you out? Leave a comment or reply to this email.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Tennessee Lookout: “New law requires Tennessee Children’s Services to cover kids 18-21 leaving state custody”

A new law taking effect this month requires the [Tennessee] Department of Children’s Services to add additional services for kids leaving state custody who are between the ages of 18 and 21.

The law requires DCS to pay low-income relatives of those children stipends set at 50% of the rate paid to foster parents while kids transition from teenagers to adults.

According to state estimates, more than 400 young adults will be enrolled in the extension-of- foster-care program in its first year. The state has budgeted $3.9 million to pay relatives caring for former foster kids in the program – an average daily rate of about $21 per family. […]

• From ABC 6 News (Iowa/Minnesota): “Lawsuit: Failures for Children’s mental health”

A class action lawsuit has been filed against the state of Iowa brought on by a number of groups including Disability Rights Iowa.

It claims the state is failing to provide mental health care for thousands of Medicaid eligible children.

[…ABC 6 News reached out to Iowa’s Department of Health and Human Services, which responded:] “The state remains committed to serving all iowans with special health care needs, especially children. We take our role serving iowans seriously, as demonstrated by our transformational work over the past three years which will continue.”

“Without these services, kids really are failed over and over, over multiple years and then they graduate into the adult system and sometimes like the criminal justice system or mental health where even less is available to them, so it really is a sequence of failures that ultimately spiral into a place of these kids being continuously in trouble,” said Cathrine Johnson, Executive Director at Disability Rights Iowa. […]

• From Kaiser Health News: “To Attract In-Home Caregivers, California Offers Paid Training — And Self-Care”

[…There are] many offerings from the California Department of Social Services that the agency says is necessary for attracting and retaining caregivers in a state-funded assistance program that helps 650,000 low-income people who are older or disabled age in place, usually at home. As part of the $295 million initiative, officials said, thousands of classes, both online and in-person, will begin rolling out in January, focused on dozens of topics, including dementia care, first-aid training, medication management, fall prevention, and self-care. Caregivers will be paid for the time they spend developing skills.

[…]The in-home assistance program, which has been around for nearly 50 years, is plagued by high turnover. About 1 in 3 caregivers leave the program each year, according to University of California-Davis researcher Heather Young, who worked on a 2019 government report on California’s health care workforce needs.

[…]Many caregivers who attended early courses care for family members with a mix of physical and behavioral needs. In fact, 3 out of 4 caregivers in the in-home assistance program are relatives of clients. But the state needs to prepare for a workforce shift, one that requires people to look outside their families. The number of California seniors is expected to be nearly 8.5 million by 2030, an increase of more than 40% from 2019. Many of them will be single.

[…] Recent surveys suggest that caregivers are likely to be interested in self-care. In a review of nonprofit caregiver resource centers in California, 35% of caregivers reported that their health had worsened while providing care, and 20% had experienced symptoms of depression. Some caregivers also reported being lonely, which could include lacking companionship, feeling left out, or feeling isolated from others. And a 2020 report by the National Alliance for Caregiving and AARP found that 26% of caregivers had difficulty managing their stress.

Robbie Glenn, a single father in Anaheim, attended [...a…] self-care class and learned to take time for himself. By day, Glenn cares for his 11-year-old son, Edin, who has birth defects from alcohol exposure and has nonverbal autism. Edin needs help going to the toilet and bathing. He has epilepsy and sometimes walks in his sleep. By night, Glenn freelances, doing post-production work, such as film editing and color grading.

Glenn now uses a timer to remind himself to take a break. “And,” he said, “I’ve been doing those breathing exercises a lot.”

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

There just is no substitute for: “Been there. Done that.” Yes, medical professionals and social workers have their areas of expertise and can unlock access to specialized supports. But some days you just need someone who has actually gone through it themselves, rather than read a book about it, you know? I have learned so much from my community of medical moms (and dads!) and know that my children are far better off for it.

What’s something that you’ve learned from other parents rather than professionals?

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From The New York Times: “Strife in the Schools: Education Dept. Logs Record Number of Discrimination Complaints”

Officials say the complaints — most alleging discrimination based on disability, race or sex — reflect grievances that amassed during the worst public health crisis in a century and the most divisive civil rights climate in decades. The complaints were logged as schools struggled to recover from pandemic-related closures, and add to the declining test scores and growing mental health challenges that display the fragility in large parts of the country’s education system.

Catherine Lhamon, the assistant secretary for civil rights, said the jump in the number of complaints, which have not yet been made public but will be reflected in the office’s annual report in the coming months, is both encouraging and sobering.

“It reflects the confidence in the Office for Civil Rights as a place to seek redress,” Ms. Lhamon said. “At the same time, the scope and volume of harm that we’re asking our babies to navigate is astronomical.”

[…]The majority of complaints in the past year, as in previous years, allege discrimination against students with disabilities — a population whose plight became more visible during the pandemic when schools drew federal scrutiny for failing to serve such students during school closures.

• From The Imprint: “Justice Department Slams Alaska for Over-Institutionalizing Youth with Disabilities”

The U.S. Department of Justice has found that Alaska’s use of residential treatment for youth with behavioral health challenges likely violates the Americans with Disabilities Act by unnecessarily segregating them from society. 

If the state does not reduce its reliance on institutional care for these young people, they are at risk of a federal lawsuit to bring them into compliance with the law, department officials warned. 

“Each year, hundreds of children, including Alaska Native children in significant number are isolated in institutional settings often far from their communities,” Assistant Attorney General Kristen Clarke of the department’s Civil Rights Division said in a press release. “Most of these children could remain in family homes if provided appropriate community-based services.” Clarke said her division “looks forward to working with Alaska” to bring the state into compliance with federal law, and to “prevent the unnecessary institutionalization of children.”

In a report released last month, the department stated that while community-based behavioral health interventions – including intensive case management, crisis services, home-based family treatment and others  — are permitted under Alaska’s Medicaid program, they are not readily available throughout the state, with a particular dearth in rural areas. This leaves the state’s system of care for struggling children and teens “heavily biased toward institutions,” with Alaska Native youth at an increased risk of such placements. 

• From The New York Times (Opinion): “Why Saving Kids is Bad Business in America”

(Trigger warning for the video at the link: It shows a 7-month-old in respiratory distress and several scenes from inside children’s hospitals. It was hard for me to watch. But it is a deeply important video for those who might not be aware of the crisis in American pediatrics and what can be done to change course.)

From the article accompanying the video:

Profit-driven management has eroded pediatric health care in America. Health care providers make more money treating adults than they do children. As a result, the number of hospitals offering pediatric care has decreased dramatically over the past two decades.

• From Oregon Public Broadcasting: “Students with disabilities face setbacks, safety risks as Oregon special education systems struggle”

[…]Entire systems of special education are fraying, as teachers, administrators and support staff try to stretch limited resources to meet intense needs.

Schools are as close to resembling pre-pandemic operations as they’ve been since March 2020. But in special education, schools are falling far short of full support and staffing. That leaves students in special education physically at risk and academically unserved — even though they are among the student groups in greatest need after more than two school years of pandemic disruptions.

National Assessment of Educational Progress, or NAEP, scores, showed the gap between students with disabilities and other students remains wide in math, with smaller gaps in reading.

[…Mom Sara] Schultz said her son was repeatedly restrained and sometimes would spend hours watching TV shows on his iPad at the last two schools. Schultz said her son would run around the school, or curse at teachers. His behavior at home changed too.

Keith wasn’t enjoying school anymore, or learning, his mom said.

“He said, ‘all days are bad days now,’ and he also was saying stuff like, ‘I’m a stupid kid, all the bad things people think about me are true,’” Schultz recalled.

Keith shut down, Schultz said. She decided to homeschool him, where she said his communication returned and his behavior improved. […]

“I just wanted my kid to get taken care of and be able to be in school,” Schultz said. “And it’s sad now because he’s at home, and he likes kids, and I hate that he’s not going. I don’t know how long it will take for him to feel safe and trust adults.”

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

“The problem with people like you is getting you to take care of yourself.”

That was my physical therapist. He meant it in a good-natured way. But the statement echoed through my brain as I drove home.

Though I had been to probably hundreds of physical therapy appointments in the last decade for my twins, this was the first one I had been to for myself. As my non-ambulatory son approaches 70 pounds, my back is no longer up to the challenge without professional help.

As the primary caregiver to children with extraordinary needs, their care needs always seem to feel more urgent. Many times, I have realized that even what I chose to do for my “self-care” was actually about reinvesting in my ability to be a better caregiver. Physical exercise, psychotherapy, this newsletter — all of these things I do in my free time are centered around my need and desire to perform caregiving tasks at a higher level. And that is part of the advantage of self-care: Taking that time avoids burnout and helps us better support our children and ourselves.

In honor of the first week of 2023 and the time of the year when people tend to focus their efforts on self-improvement, let’s talk about how we as parents to disabled children can take the time and space we deserve for ourselves.

I’ll add a caveat that the need for self-care does not excuse the need for community care. As I talk about a great deal on Medical Motherhood, American society and policymakers can and should do better to create a world where disabled children and their caregivers can survive and thrive.

But at its core, self-care is about reconnecting with yourself and your own needs. Nobody can do that for you but you.

To help you prioritize the time and energy it takes to do self-care, let’s establish why it is necessary. Research bears out the idea that caregiving to children with disabilities is more stressful than typical parenting, and that the number of parents affected is growing. As reads a 2009 review of the needs of caregivers to medically fragile children:

“With health care advances in medicine and technology, there are a growing number of children with chronic conditions and disabilities (i.e., the medically fragile) surviving longer and being cared for almost exclusively in the home by parents. The physical strains, financial constraints, emotional effects, and social isolation experienced by parents caring for children with such complex medical needs may ultimately impact their physical and emotional health.”

And, in contrast to children with medical challenges, some studies have found that behavioral challenges are even more closely associated with parental stress, and its related impact on health. For example, parents of children with the wide-ranging diagnosis of cerebral palsy reported higher stress levels and lower self-confidence when the child with CP also had behavioral health needs. In another study, parents of autistic children reported higher rates of depressive symptoms than parents of children with other diagnoses.

So given that these phenomena are well-established, it was surprising that I could not find much in the way of research on effective self-care strategies for parents to disabled children generally. But I did find a 2020 study that focused on parents of children with fetal alcohol syndrome, which compiled a lot of great information on the under-researched topic. The researchers found that these (mostly adoptive) parents faced numerous obstacles to self-care, but that the more confident a parent felt in their ability to achieve this respite, the better they felt about their parenting.

“Stress reduction is important for all parents,” wrote the researchers. “But stress reduction interventions may be especially critical in caregivers of children with special needs given their documented high stress levels.”

Some policymakers and others might think that the answer is more “services.” For a long time I, too, thought that if I could just get to the end of the rainbow of promised “services” that that would reduce my stress. But I discovered that government services like school and in-home caregiver hours, while they can be of limited help, came with their own set of stressors. The researchers, too, found that more direct methods of stress reduction were more effective: “Though standard services such as respite care and case management may slightly reduce stress, targeted stress-reduction interventions have a larger effect on parental stress-reduction…,” they wrote.

Helpfully, these folks identified four buckets of self-care interventions:

*       Mindfulness (being alone, going outside, prayer)

*       Being with others (social outings, support groups)

*       Therapy (Acceptance and Commitment Therapy was called out as particularly effective for this population)

*       Physical Exercise (yoga, walking/running, weight-lifting)

They also identified the barriers to self-care — what got in the way of parents being able to do these basics.

“Lack of time was by far the most common obstacle reported,” reads the study, “with lack of financial resources also frequent. Many parents also noted that not having child-care, especially child-care that is equipped to handle the needs of their children, was an obstacle to self-care.”

Time and money. No surprise there!

I remember people telling me at the beginning of my twins’ lives that this life is a marathon and not a sprint. I didn’t know what that meant. But with a decade of caregiving behind me and who knows how many decades ahead of me, here’s what I’ve learned about self-care:

* Pick a small, achievable goal. I grew up in TrackTown, USA, otherwise known as Eugene, Oregon, the literal birthplace of NIKE. I’ve always been surrounded by runners and joggers so I thought that’s what I had to do to be “fit.” But it turns out that running is too high-impact for the particular body that I own and brisk walking is just as beneficial. Released from my false notion of fitness, I have a wonderful new tool for self-care. Which leads me to…

* Each person is an individual and each moment is only a point in time. If self-care for you looks like kickboxing rather than a bubble bath, do that. If normally you’d enjoy going out with friends but you’re just not feeling it tonight, go get a drink by yourself instead. Self-care is ultimately about feeling the freedom to do what it is that YOU want to do and it’s counterproductive to “should” all over yourself.

* Eat for physical health; exercise for mental health. OK, maybe this violates the rule above, but personally I lost 25 pounds and achieved greater self-assuredness when I adopted this motto. Eat plenty of low glycemic index foods when you have the willpower to do so. The more you do, the more you will like them. Exercise will help you keep on track mentally, which also cuts down on reaching for the junk food for comfort.

* Prioritize sleep. I know more than anyone how this is much easier said than done, but… try.

Knowing how difficult it was for me to get out of the house for the hour-long appointment, my physical therapist gave me several simple exercises to do at home. But, I was rarely able to keep up the routine.

Three months ago, though, I found a full-body exercise class. The appeal of being able to leave my house once a week for an hour turned out to actually be the ticket to progress. Motivation and linked rewards come in all stripes.

When it comes to self-care, we often have to focus on our why before we determine our what. Take the time to puzzle it out. You deserve to put you first.

What if there were a weekly news column just for people raising disabled and neurodivergent children? Medical Motherhood is just such a publication from me, a former newspaper reporter. Never any ads; entirely reader-supported. Consider becoming a free or paid subscriber today!

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From CNBC.com: “Congress’ lame duck session leaves ‘unfinished business’ on issues that address Americans’ everyday financial needs”

[…]Supplemental Security Income, a federal program that provides benefits to the elderly, blind and disabled, turned 50 this year.

Yet many of the program’s rules have not been updated for decades.

A bipartisan bill from two senators from Ohio — [Democrat Sherrod] Brown and Republican Rob Portman — would raise the asset limits for beneficiaries to $10,000 for individuals and $20,000 for couples, while also indexing them for inflation.

That proposal did not make the cut in year-end legislation despite high hopes from advocates.

[…] The fate of the proposal is unclear since Portman is retiring this year and it remains to be seen whether another Republican leader will step up to support it, [Shai Akabas, director of economic policy at the Bipartisan Policy Center,] said.

“It’s going to probably be some time before that gets another opportunity,” Akabas said. […]

• From The Washington Post: “Judy Woodruff on how her son with disabilities changed her view of health care”

Last month, TV anchor Judy Woodruff had some news of her own: She is stepping down from “PBS NewsHour” on Friday, Dec. 30.

[Woodruff will continue to report, though, and has a special focus on issues in the disabled community. Her son, Jeff, had mild spina bifida before a failed shunt replacement left him with much more serious disabilities.]

“I thought I was sensitive and compassionate before Jeff was injured,” Woodruff says. “But I found that there’s just a whole other level of what he was experiencing that affected me profoundly.” As a parent and caregiver, “you suddenly belong to this community that you never knew you were going to be part of, and none of us probably wanted to be there.”

[…]As parents, she and [fellow journalist] Al [Hunt] were lucky to have the flexibility and financial resources to give Jeffrey whatever was required. As journalists, they experienced an intimate look at America’s health-care system.

“It makes you appreciative of how difficult and expensive a serious health issue is,” Al says. “It used to infuriate me when politicians would talk about how good the current health-care-delivery system was. They never went through the hell of not being about to afford the best care.”

[…]Over the next two years, Woodruff says, she plans to do more segments on disability in America, with a special interest in the lack of resources for adults living with disabilities. It is an issue that cuts across politics, demographics and party lines; she hopes she can bring her personal experience to the stories and help restore some of the country’s broken trust in the media. […]

• From North Country Public Radio (New York): “For disabled children of military parents, frequent moves can lead to schooling and health care gaps”

[…]Advocates say military families with disabled children often face problems […] when they move from place to place. Their new district or state might not offer the same services as their old one.

“It’s a very difficult system to navigate, especially when it comes down to the school district level,” said Jackie Nowicki, a researcher with the Government Accountability Office who has studied the programs the Defense Department offers to families with children in special education.

Though initiatives like the School Liaison Program and the Exceptional Family Member Program exist to support families with medical and educational transitions, the Defense Department is limited in what it can do to help families with special education disputes. There is no statutory role for the department in determining a child’s eligibility for special education services. That’s mostly up to the Department of Education, states, and school districts.

“The way the law is designed, they're provided latitude in defining disability categories and setting eligibility criteria. That results in unevenness or variation,” Nowicki added.

Frequent moves — a staple of military life — add to the problem.

“It's not as though our experiences in the military community are different from the experiences of our civilian counterparts in special education. It's just that we experience them more frequently because of the highly mobile military lifestyle,” said Jennifer Barnhill, lead researcher with Partners in Promise, a nonprofit organization that provides special education resources to military families.

Disabled children are evaluated to determine the kinds of support they need. But when they move, their new school districts often start that process from scratch. It takes, on average, 171 days for them to do new evaluations, according to a survey Partners in Promise did last year. The Individuals with Disabilities Education Act, or IDEA, requires school districts to conduct evaluations within 60 days.

Delayed evaluations mean students have to wait longer for services.[…]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

In September 1897, 8-year-old Virginia O’Hanlon wrote a letter to the editor of New York’s Sun newspaper. The quick response was printed as an unsigned editorial but was the work of veteran newsman Francis P. Church. Though the writing is now 125 years old, the sentiments somehow still inspire and ring true.

It has been a tradition at several of the newspapers I worked at to reprint it each Christmas and since this week’s column falls on Christmas Day, I thought it would be appropriate to do so here. Known as “Yes, Virginia, there is a Santa Claus,” it has become history’s most reprinted newspaper editorial, appearing in part or whole in dozens of languages across the world and media landscape. This version was taken from the now-defunct Newseum’s website.

Yes, Virginia, there is a Santa Claus

DEAR EDITOR: I am 8 years old.Some of my little friends say there is no Santa Claus.Papa says, ‘If you see it in THE SUN it’s so.’Please tell me the truth; is there a Santa Claus?

VIRGINIA O’HANLON.115 WEST NINETY-FIFTH STREET.

VIRGINIA, your little friends are wrong. They have been affected by the skepticism of a skeptical age. They do not believe except they see. They think that nothing can be which is not comprehensible by their little minds. All minds, Virginia, whether they be men’s or children’s, are little. In this great universe of ours man is a mere insect, an ant, in his intellect, as compared with the boundless world about him, as measured by the intelligence capable of grasping the whole of truth and knowledge.

Yes, VIRGINIA, there is a Santa Claus. He exists as certainly as love and generosity and devotion exist, and you know that they abound and give to your life its highest beauty and joy. Alas! how dreary would be the world if there were no Santa Claus. It would be as dreary as if there were no VIRGINIAS. There would be no childlike faith then, no poetry, no romance to make tolerable this existence. We should have no enjoyment, except in sense and sight. The eternal light with which childhood fills the world would be extinguished.

Not believe in Santa Claus! You might as well not believe in fairies! You might get your papa to hire men to watch in all the chimneys on Christmas Eve to catch Santa Claus, but even if they did not see Santa Claus coming down, what would that prove? Nobody sees Santa Claus, but that is no sign that there is no Santa Claus. The most real things in the world are those that neither children nor men can see. Did you ever see fairies dancing on the lawn? Of course not, but that’s no proof that they are not there. Nobody can conceive or imagine all the wonders there are unseen and unseeable in the world.

You may tear apart the baby’s rattle and see what makes the noise inside, but there is a veil covering the unseen world which not the strongest man, nor even the united strength of all the strongest men that ever lived, could tear apart. Only faith, fancy, poetry, love, romance, can push aside that curtain and view and picture the supernal beauty and glory beyond. Is it all real? Ah, VIRGINIA, in all this world there is nothing else real and abiding.

No Santa Claus! Thank God! he lives, and he lives forever. A thousand years from now, Virginia, nay, ten times ten thousand years from now, he will continue to make glad the heart of childhood.

Medical Motherhood is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From National Public Radio: “Children's hospitals are struggling to cope with a surge of respiratory illness”

Waiting for their turn in the ER, dazed-looking parents in winter coats bounce crying children in their arms, trying to catch the eye of Dr. Erica Michiels. Us! Pick us next! they seem to plead with tired eyes.

Michiels directs pediatric emergency medicine at Corewell Health Helen DeVos Children's Hospital in Grand Rapids, Michigan. Lips pressed together in a thin line, she surveys what she calls the "disaster" area.

"People have been out here waiting for a couple hours, which is heartbreaking," she says.

Typically, the ER at Devos Children's sees about 140 kids each day, according to Michiels, but on a recent Tuesday in mid-December, they saw 253.

"I hate when we have a wait," sighs Michiels. "But for right now, we can't do it any other way."

Like so many other children's hospitals across the nation, the staff at DeVos Children's has been stretched beyond capacity by waves of patients with RSV and, increasingly, the flu.

This surge of sick kids is coming after years of some U.S. hospitals cutting back on pediatric beds — in part because it is typically more profitable to treat adult patients.

The remaining pediatric beds are increasingly concentrated in urban areas, leaving families in rural areas to travel longer and longer distances to get the care their kids need. […]

• From ProPublica: “‘Kids Seem to Be a Paycheck’: How a Billion-Dollar Corporation Exploits Washington’s Special Education System”

[…]Northwest SOIL’s corporate owner, Universal Health Services, has for years skimped on staffing and basic resources while pressuring managers to enroll more students than the staff could handle, an investigation by The Seattle Times and ProPublica has found. The psychiatric hospital chain touted its first acquisition of special education schools in 2005 as a “comfortable fit” with its businesses, and Northwest SOIL staffers said they saw the profit motive drive day-to-day decisions.

School districts pay programs such as Northwest SOIL, called nonpublic agencies, to provide specialized instruction for students whose needs can’t be met in traditional public schools. But dozens of complaints filed with the state and school districts in recent years, along with interviews with 26 former administrators, teachers and assistants, show that Northwest SOIL received public money without providing the services or education that its students needed — or that taxpayers paid for.

Northwest SOIL collects about $68,000 in annual tuition per student — more than triple the average per-pupil cost for a K-12 student in Washington — while a student with the highest needs can bring the school as much as $115,000 a year, all paid for with taxpayer dollars.

Last week, The Times and ProPublica reported that the state’s failure to regulate this corner of Washington’s special education system had allowed the school to operate for years with little to no curriculum and with staff so poorly trained that they often resorted to restraining and isolating students. […]

• From The New York Times: “At a holiday celebration in southern Ukraine, ‘kids still need miracles.’”

MYKOLAIV, Ukraine — Some of the children who sat on Saint Nicholas’s lap asked for iPhones. Others asked for peace.

Others, said Yevhen Vorobyov, who was dressed as Saint Nicholas, asked for air defense. Some just wanted clean water, he said, “so that they can finally have a normal shower.”

It is far from a normal holiday season in Mykolaiv, a city besieged by war and decimated by Russian missiles. But on Monday, as children gathered in a boarding school in the southern Ukrainian city to celebrate Saint Nicholas Day, there was still time for celebration.

Nearly a hundred children visited the school, which serves students with special needs, to play games, visit Saint Nicholas and receive presents, including handmade dolls from Canadian police officers and tangerines from local territorial defense soldiers.

[…]Mr. Vorobyov, a trained rehabilitation specialist, said he and his wife use art, sports and what he called “laughter therapy” to reach children who are struggling with their mental health. “We want not only to save people’s lives,” he said, “but also their sanity.”

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

In thinking about this week’s column, my brain kept returning to the image of a light in the darkness.

Now is the time of year that we in the Northern Hemisphere see the sun the least. Everything is cold and still and dark. But in such darkness, even the smallest light is clearly visible.

The darkest time in my life was when my children were small. I had wonderful, supportive family, but the double whammy of multiple diagnoses and fragile newborn twins — combined with the sudden loss of my career due to their extraordinary care needs — made for dark times. I had little in the way of formal support, despite knocking on every door. It was the midst of a recession, the parade of social workers coming to my house would say. There was no money for actual help for my kiddos or me.

So I was interested to hear that the federal Office of Special Education and Rehabilitative Services was hosting a webinar this week to “highlight how federal agencies, State agencies, local programs, and families can work together to support infants and toddlers with disabilities’ growth and development.” The hosts promised to share a “…vision for serving all infants and toddlers with delays and disabilities….”

I was 10 minutes late to the webinar. I was juggling the kids’ tube feeding and online school assignments and just couldn’t get on before then.

When I got on, the Biden administration was announcing that special education programs for infants and toddlers would get twice as much funding in their next proposed budget. If approved by Congress, $932 million would go to support early intervention programs, known as IDEA Part C grants.

(The services for tykes are part of a White House proposed budget that also calls for Congress to approve an additional $3.3 billion more than 2021 levels for services under the Individuals with Disabilities Education Act (IDEA). That’s would be a total of $16.3 billion to match what states and local districts spend on education for pre-K to grade 12 for students with disabilities.)

The webinar consisted of a lot of people announcing the good work they’ve done or the good work their “partners” had done. While I cleaned up from lunch and swept up a spill, I struggled to understand what of actual substance was being proposed to do with the dollars. Everyone was so upbeat and self-congratulatory during the hour-long presentation, one might assume that the problem of educating young disabled children was well in hand.

In fact, what I might have missed during the first 10 minutes was that the United States certainly does not have the problem well in hand. According to a 2020 study the administration cited in its subsequent press release, a scant 18.7 percent of children eligible for early intervention ever got a referral. Of those, only a quarter actually received services. That would indicate that only 5 percent of eligible children actually got early intervention, the scientists concluded.

I then took a look at the new guidance documents the administration released and combed through them for more clues about what this nearly $1 billion would do to light up the darkness. In them, I found guiding principles and marveled at how several of the recommendations tried to seat power with the families. It calls for administrators to use “family voice” to guide their actions, to use “culturally and linguistically responsive practices,” and to focus on the “individualized needs of each and every infant and toddler.” These all seemed to me like codes for one thing: Listen to the family!

I’ll editorialize a step further: Listen to young moms!

Young women — scared, uncertain or worried about what’s going on with their babies — need better support if we are ever to improve the rates of young Americans who access early intervention services. They need to hear about their options, they need to have the bandwidth to manage the appointments and they need to be truly, genuinely supported once part of that system.

And yet, I worry this message loses itself in the very complexity of the early intervention system’s design. Even from the beginning of life, the “administrative burdens” on disabled people — which the Center for American Progress so brilliantly laid out in their report earlier this month — are throttling the gains we could be making towards equity, inclusion and all people living to their full potential.

As I felt during the webinar, the people who have the time and energy to be in planning discussions — as well as the ability to code switch to the degree needed to understand what is being discussed — is itself a barrier to true collaboration with disabled people and their families.

I don’t have a magic wand to fix the system. But if I could give any advice to young moms now, it’s that there is no one coming to “save” you. Even a really well designed program can only respond to the needs you express. That means they need your engagement and energy to work. You have to say what you and your child need before anyone can provide it, so you have to find your voice and speak your truth.

And, importantly, you have to have the courage to say what isn’t working — and even walk away when promises of help prove false.

When darkness is all around, we look for the light. But sometimes the light is not somewhere out there, it’s in us. It’s in the mom who juggles her three sick kids and work obligations all winter. It’s in the dad who is exhausted but piles the kids in the car to go make memories at the children’s museum anyway. It’s in the grandma who doesn’t move so fast anymore but makes a special meal for all the special people in her life.

The light is in you. Keep it burning.

Don’t miss our 30 percent off sale on paid subscriptions! Going on now until Christmas.

You can also offer your friends gift subscriptions during this season of giving, or donate one to someone in need. (I have a list of folks who I can give the donated subscription to.)

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From State of Reform: “Lawmakers propose legislation that would pay Oregon parents to care for their disabled kids”

*Editor’s note: I am a member of Advocates for Disability Supports, which has advocated for this legislation.

Last week, Oregon lawmakers discussed legislative proposals that would establish a system that would pay parents to care for their children with intellectual and developmental disabilities.

Members of the Oregon Senate Interim Committee on Human Services, Mental Health, and Recovery discussed two legislative concepts during a meeting on Friday. Sen. Tim Knopp (R-Bend) introduced Legislative Concept (LC) 656 to the committee, which aims to extend financial support for parents of disabled children that was offered during the COVID-19 pandemic.

The federal government partially paid for the parents of disabled kids to take care of their kids during the pandemic. And Knopp said he was contacted by constituents requesting that he support legislation that would provide an opportunity for these benefits to continue in some way. 

“The reasons they wanted this to continue were the fact that they saw significant benefit of kids being overall healthier, happier, more integrated in their communities, and staying out of institutional living situations and the hospital,” Knopp said. “They recognized that kids actually did better when parents were being paid to care for these kids.”

[…]Sen. Sara Gelser Blouin (D-Corvallis) introduced LC 1256 to the committee. She said she conducted some research to determine whether it was best for the state to establish a paid-parent caregiver program as part of Oregon’s Medicaid plan or to attempt to acquire a waiver.

[…]Due to the high cost of a Medicaid plan, LC 1256 proposes to establish a paid-parent program through the state applying for a waiver.

“And because it’s a waiver, we can identify the population,” Gelser Blouin said.

The state would be able to categorize kids into service level tiers based on age. 

• From GPB News (Georgia): “Georgia legislative committee proposes path to end disability services waitlist”

A bipartisan group of [Georgia’s] legislators on Wednesday recommended the state fund 2,400 additional waiver slots in the upcoming FY2024 budget as the first installment in a three-year plan to do away with the waitlist completely. In 2022, lawmakers funded an additional 513 waiver slots for the FY2023 budget.

[…]The committee held meetings over the course of several months and listened to hours of testimony from advocates, providers and Georgians with disabilities about how the state’s hard-to-navigate system is harming lives.

Roswell resident Celeste Chippero — who moved from Michigan to Georgia six years ago — testified to lawmakers during a hearing in August that parents of disabled children and adults have been left stranded.

Through tears, she described caring for her 32-year-old son, Peter, who has cerebral palsy. 

Their family has been on the Medicaid waitlist for 5 years, she said, and they wrongfully assumed when they moved that care would be easy to access in Georgia as it was in their previous home.

“I know parents who left Georgia to go someplace else so they can get care for their kids,” she said. “And quite honestly, we can't retire right now for what we have to do to provide for our kids to be in these programs.”

“The greatest fear as a parent: what happens when I'm gone?” she continued. “We need programs that support the severely disabled and that aren’t warehousing them or [having them] institutionalized. He deserves a life where he can enjoy the things that he does.”

• From The Sacramento Bee: “Four years after child’s fatal restraint, Davis schools commit to new safety training”

Davis schools reached an agreement [with] the federal government this week to update policies on restraining students, resolving an investigation triggered by the 2018 death of a 13-year-old student. Davis Joint Unified committed to providing additional training and monitoring how schools practice restraint and seclusion for students with disabilities by January 2023. The agreement with the U.S. Department of Education comes almost exactly four years after Max Benson died after an three employees at an El Dorado County nonpublic school placed him in a face-down prone restraint for nearly two hours. Max, who had autism, suffered fatal brain damage and died in November 2018.

[…]“The tragic death of a child subjected to prolonged and repeated restraint at a school placement through this district underscores the urgency for school communities everywhere to carefully examine their restraint and seclusion practices to safeguard children in their care, in addition to their obligation to satisfy the federal civil rights laws we enforce,” Assistant Secretary for Civil Rights Catherine E. Lhamon said in a statement.

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

The second Sunday of every month Medical Motherhood publishes Where Is the Manual for This?!, an editorial cartoon by Lenore Eklund.

Is it really too much to ask that all these systems set up to help disabled children do what they say they are going to do? We don’t need more toys, we need real change!

What is it that you are hoping for this holiday season for the little ones in your life who experience disability? Let us know in the comments or on social media.

Just a few announcements before we get to the news briefs.

Last week, I brought you the story of Lisa Tschudi in the issue On the cusp of disabled child's adulthood, a mother wonders how caregiver income could have changed their lives. This week, her new podcast Love Doesn’t Pay the Bills published her interview with me. If you want to learn more about my personal journey, check out: Can We Make This Something That We Can Actually Use?: With Guest Shasta Kearns Moore on Spreaker.

Don’t forget that we are running a holiday special right now of 30 percent off paid subscriptions. Support this publication and join the inner circle of folks who get access to the full archive, special behind-the-scenes info and discounted events.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From the Center for American Progress: “How Dehumanizing Administrative Burdens Harm Disabled People”

For disabled people in America, barriers to critical, lifesaving safety net programs are too often a part of everyday life. These barriers, known as “administrative burdens,” are roughly defined as any challenge that makes it difficult for someone to access or maintain assistance for which they otherwise qualify.2 Administrative burdens cause real, lasting harm to huge swaths of disabled Americans, making it difficult for them to navigate a system that is supposed to help them cover basic necessities such as food, housing, and medical treatments.

[The report contains 17 different recommendations for shifting administrative burdens from disabled people and their families to the government and program administrators.…]

Just as it is expensive to be poor, it is expensive to be disabled. Households with disabled adults need 28 percent more income, on average, to achieve the same standard of living as adults without a disability. Moreover, the added costs of medicines and medical procedures, accessibility accommodations in homes and transportation, and many other regular expenses are exacerbated by the fact that disabled workers—if they are able to work and are employed—earn just 74 cents for every dollar earned by their nondisabled counterparts; Black and Hispanic disabled workers, in particular, earn 60 and 61 cents, respectively, for every dollar earned by nondisabled, full-time white workers. The extra cost of living for disabled people is often referred to as the “disability tax.”

Administrative burdens within programs intended to help people with disabilities add another dimension to the disability tax, often financially but also through additional drains on disabled people’s time, energy, and physical and mental well-being.

[…]On top of negatively affecting applicants and participants, administrative burdens are detrimental to program administrators. Burdens pull administrators away from providing people with helpful and personalized assistance and instead leave them to comb through voluminous amounts of paperwork and to adjudicate minute filing deficiencies.27 Government workers should have rewarding jobs providing aid to those who need it most, but they are often left overwhelmed, which, sadly, can translate into negative experiences for people seeking assistance. […]

• From Disability Scoop: “Pediatricians Get New Guidance On Cerebral Palsy”

A pair of major health organizations are issuing new guidance to doctors about how to identify children with cerebral palsy and appropriately treat the condition.

In a clinical report and an executive summary published online this month in the journal Pediatrics, the American Academy of Pediatrics and the American Academy for Cerebral Palsy and Developmental Medicine said it’s critical for kids to be screened and identified early to ensure the best outcomes.

[…] If kids with the developmental disability experience new symptoms or functional declines, physicians should fully investigate the changes without assuming that they are the result of cerebral palsy, the medical groups said.

“It really does ‘take a village’ to help children with CP reach their full potential,” said Dr. Garey Noritz, lead author of the report and chairperson of the American Academy of Pediatrics Council on Children With Disabilities. “Families and physicians share this goal and can partner to improve quality of life by focusing on the strengths of the child and family, providing appropriate services and adapting the environment to the needs of each child.”

• From The Oregonian/OregonLive: “Oregon students with disabilities were promised extra help post-pandemic, but 15 months later, aid is limited”

Oregon public schools enroll about 80,000 students with disabilities, many of whom struggled mightily during the year-plus-long switch to online school.

As a result, state and federal officials ordered the state’s 197 school districts to provide intensive make-up services to special education students who missed out on help such as speech therapy or one-on-one reading instruction to which they were legally entitled during the pandemic. They also directed schools to ensure catch-up by June 2023 for students on individual education plans who made little to no progress during online school.

But parents, teachers and advocates say that stretched-thin school districts are struggling to provide the promised services, given severe staffing shortages.

“It takes all [my] mind, body and soul to get what [the district] is legally obligated to give my child,” said Korallynn Basham, whose 8-year-old daughter Clara, a second grader at Creston Elementary School, has a rare genetic development disorder known as Williams-Beuren syndrome.

The requirement that schools provided amped up special education services only applies to last school year and this one, and a spokesperson said the Oregon Department of Education does not anticipate extending it, even if children with disabilities remain far off track or didn’t receive any extra help. […]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

This week’s narrative comes from Lisa Tschudi, who just launched a new podcast called Love Doesn’t Pay the Bills. (Because, as she says, no matter how much we love our children, love isn’t enough to be warm, dry, safe and fed.) She’ll showcase family stories from caregivers, as well as stories from policymakers and business leaders, to show how we can make our workplaces more flexible and accommodating to care work. Her guest on the podcast this week will be yours truly, so subscribe to her feed to hear our conversation!

Medical Motherhood is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.

Take advantage of our 30 percent off holiday sale today to upgrade to a paid subscription!

I had my kids pretty early, relatively. I had just graduated college with a degree in mathematics before my first daughter was born. I grew up pretty upper middle class, comfortable. It was always assumed I would go to college. I didn’t really have a driving motivation but I fell into these math classes and visual arts classes at UC-Santa Cruz. It was pretty relaxed.

I didn’t know too many people that had disabilities. I had a roommate in college who had CP (cerebral palsy) but it was the huge elephant in the room. We didn’t talk about it. He did not want to talk about it.

Then the summer I graduated from college, we moved, got married and had the baby, all at once. Two years later, I had the second baby. I did not want to raise an only child.

The disability, we started to realize it gradually. We just started to notice that my second daughter wasn’t meeting milestones you would expect: wasn’t sitting up, wasn’t crawling, wasn’t even babbling that much.

We started to investigate that around 6 months old — there’s something different here that we need to look at.

So we were in the process of getting referred to a neurologist when at 13 months old, she had a seizure – status epilepticus (a seizure that lasts longer than five minutes, or more than one seizure in five minutes). She was sedated to a coma for a couple of days, in a hospital.

That’s really when I fell into disability world.

The start of it.

*

My husband was our income provider, with me having just graduated from college and having the two babies. He was in a really niche job at first in the Bay Area. But there were layoffs and we ended up in Portland briefly and then to Southern Oregon where we’ve been since then.

The fact that we moved a lot definitely complicated a lot of things for me for sure. On top of being in Special Needs World, I was — not a young mom, but I was in my 20s, a mom before I had established myself or my husband had. We didn’t own our own home, we didn’t have any of those things set up before we had the kids.

So it was definitely us, over and over again, trying to find out, well, where can we live and make a living on one salary?

*

We don’t know for sure what caused it; something that happened most likely when she was still in utero. After the epilepsy diagnosis, we got an MRI that showed a small cerebellum, a condition known as Dandy-Walker Syndrome.

We ended up finding a physical therapist that was in Grants Pass — 30 miles away. She was amazing and just loved on us as a family. She did craniosacral therapy on her and I was intrigued and could feel my daughter responding to it. I ended up going to massage school for a year when my younger daughter was just starting kindergarten. I was doing class in the evening, trying to fit in all the other things, too. We really didn’t have other caregivers at all, the Affordable Care Act hadn’t happened. There really was just a void of anyone other than me being available. So I never really did anything with the degree.

I was in a state of exhaustion. That’s what I’ve learned over the years: She’s the place that I can pour into. Just her. She takes everything I’ve got. Then there’s all the emotional stuff that goes along with finding out that your child has a disability — wow, this isn’t going to go the way I imagined it when I was pregnant — and all the things you have to come to grips with. And I was driving her around to different therapies and doctors, and eventually the neurologist and dietician for her ketogenic diet.

While all of this is happening, we were really unstable financially and housing-wise. We were moving practically every year for the first 10 years. So I was always making all of those arrangements, packing, unpacking. It was just a lot.

My husband was working full-time. He was supportive when he was home but he was out of the house in excess of 40 hours a week. It was just really going through one day after the other after the other. Just getting through.

I would be up at night; I would be very vigilant of my daughter having seizures. And there would be times that I would have to act as the emergency first responder.

There was just this never-ending quality of it. When do I sleep? When do I act as a human being who might have some friends to go see? Might have some self-care routines? Might, you know, read a novel?

*

At various points we did various things for therapy. At one point we did an intensive program, three times a week.

I remember I had to go back and forth for the therapist to have a break during the several hours that my daughter was there. That really irritated me a lot. Here I am with no break, not even overnight, and I’m having to drive back and forth another time to make sure that this person can have a 30-minute lunch break!

But it was useful to my daughter. I really think she benefitted from a lot of those sessions.

We since added another diagnosis of ataxic cerebral palsy. She definitely has intellectual disabilities. She’s very challenged with her movement and her coordination and her balance. And, you know, the epilepsy. We’ve had quite a few hospital visits for seizures. Eventually, she failed several medications and we were referred to try the ketogenic diet.

A true ketogenic diet to treat epilepsy is a lot of work in itself. I was spending a lot of time creating meal plans to the appropriate specifications, doing our shopping, really reading every packaged label, measuring every meal out to the nearest gram — every ingredient in every meal — so that it would be the appropriate percentage of fats to carbohydrates that we had to calculate out — that I calculated out. Then there were supplements, prescriptions, and over-the-counter medications.

That was really intense. It did work. It was a light switch and it was amazing for her. So it was worth it. But that was where I was putting a lot of my time and effort as well.

She was on it for nine years, which is a very long time to stay on that diet. It has its own potential side effects, but it was prescribed in my daughter’s case and it did work for the epilepsy.

After the first two or three years, we had our routines and ways that we did things that cut back on the amount of effort. It still took a certain amount of time. If we were out anywhere, I would bring food along for her — even out to eat. Nothing you’re going to order in the restaurant is going to be measured out to the gram like this. So, like, doing the drive thru fast food was off the table. I’m exhausted, I want to pick up burgers — no, can’t do that.

*

I felt really left behind at a certain point. That change isn’t happening for me, that change when the caregiving isn’t so intense anymore. There’s no relief. I reached a point when my daughter was a teenager of being really quite angry a lot of the time and really feeling trapped for sure.

By that point, I’ve got one typically developing. I know what it’s like. By the time she was 14 or 16, I might barely see her in a week. She’s getting herself there, with her friends.

Being a younger mom, my vision had always been that — Well, I’ll still be pretty young when they’re grown — and that will be my time. I definitely reached a point of wrestling with that wasn’t happening for me.

Also, the financial aspects really got to be quite, quite difficult. There’s still no way that both my husband and I could work conventional jobs. There’s just too much “on call” that our systems leave to the families and too frequently that we would have to not show up for our other jobs.

I really, truly and honestly feel that I didn’t have the opportunities that most people have — and everyone should have — to earn money, and it really meant a lot to my family.

In 2014, my husband was laid off from the job that he was working at. That left us very suddenly without any income; my daughter still requiring a level of care that one of us had to be with her to an extent that really does preclude a conventional job. That was a really hard time. It really became visible to me that I hadn’t been earning a paycheck because it was all on him to go find another job and we didn’t have another income from me to help float us.

We probably would have both preferred to transition to him being the stay-at-home parent, but the jobs that I was looking at with “no work history” weren’t going to earn enough for a family of four and we couldn’t go that route.

Starting from then, I had a period of time where I really came to grips with the lack of income and the level of care that my daughter needed. It is two people’s full-time job in her case. How can I do that and be anywhere else? Also, the “on-call” aspect. How can I be “on-call” for her in the way that I need to be and do anything else?

*

My daughter is about to turn 21 soon. It’s getting better. And I do think a lot of things have improved in some pretty major ways.

When my daughter was very young, I really didn’t experience much formal support at all. It took me years to even hear that CIIS existed and that my daughter might qualify. (CIIS stands for Children’s Intensive In-Home Services, a Medicaid home services program in Oregon for high-needs children.) That was with me asking all of her doctors, asking all of her teachers, asking everywhere I could think, “Who can help me?”

We tried several different places for preschool. None of them would take her with her medical conditions. When we got to kindergarten age for school, she was put into the — what’s the word? — segregated classrooms. It was very much that.

But I needed her to be in school. That was the only care outside of myself that she had. Supposedly that was the only place that she could get the level of supports that she needed — but she had very, very little of any of those services, and she was often taken apart from her peers, shuffled around to many different schools in our area.

The last one, in 8th grade, was 30 miles away from our home. I don’t think any of the students had much language. Her speech device was thrown. They cancelled school for just that class for a day or two because the windows were broken.

Those are the kind of experiences we were having in school that were really not what I would have liked them to be. It really isolated her, and me as a parent. She’s not even meeting kids in our neighborhood. She’s not meeting kids that she would run into in the grocery store. My older one was. She’s making friends, and she’s on a track that she’s with her friends. To not have that happen for my younger one, it was really sad.

When my daughter was entering high school, I advocated for her to come back to our neighborhood school. It was a lot better. She was still in a segregated classroom but it did have more permeability with the rest of the school. She was actually hired to work as a professional actress in a world-class theater production. That was just incredible. The director knew another young man with significant disabilities and he knew there was this scene in Hairspray that takes place in a special education classroom and said, “Gee, why don’t we get some kids on stage who would be part of that classroom?” That was really cool.

Now, she’s in her last year of the 18 to 21 program. It’s going well from the perspective of she enjoys going. She’s excited to see the other students that are in there with her. They mostly take a lot of field trips to different places around town. It’s really good from that perspective.

But I’m nervous and not seeing the line from this to what happens next. It’s supposed to be developing what the next steps are for an adult life for these young people. I’m not really sure in my daughter’s case what that looks like.

We now have DSPs (Direct Support Professionals — in-home caregivers paid for by Medicaid, something that was not offered to minors before 2014 in Oregon) — awesome. It’s a challenge to hire for sure and to fill those positions. And also, regardless of being able to find the individuals, it’s not to the point where I as a parent can depend on XYZ hours. There’s an oversight aspect, on-call. I just don’t see how that meshes with having a conventional job and having the same opportunities as other people do. Even in the best cases, you’re going to have people call out from DSP positions. And it’s not the best of situations, because it can be very hard to locate people at all.

I’m really lucky in my situation at this point. My older daughter can now be the paid caregiver and my husband and I are co-owners of a business at home (Two Squared Media Productions, which supports podcasts and audio production). But a lot of people don’t necessarily have that within their family: The fact that there are three of us to one person who needs care.

And, when school is over next summer, we will have no dependable times that my daughter is in other people’s care. It will be all on us.

I’ve been starting to ask a lot of questions about work — we’re in voc rehab (Oregon’s Vocational Rehabilitation program). And that’s been going super, super slowly. I’ve asked for meetings to get established in the adult services and it doesn’t seem to be leading to much yet. We’re still in the in-take process.

That seems to be all there is, really, in a lot of the social services. When my daughter was young, especially, that was the experience: sitting, filling out paperwork, sitting in meetings. Then it would be six months later, or a year later, whatever-thing-it-was had not been provided. I had complied with all of the steps. I had replied to all of these intrusive questions — people treating my family like we’re suspects….

*

I’m thinking about the future in the sense that I’m pursuing what steps I can. But I’m also trying not to think about it because I’m not there yet. Right now, school is going great. And last summer, I realized, things were actually going really well without school.

It used to be every May I would be, like, panicked. It’ll be all on me again, for months.

I realized at the end of this summer, I didn’t feel like I had. But this summer, I had pay when I was on schedule as a caregiver. We’re in a comfortable home. And my daughter was having a good time. Every different DSP that we hire has a little bit different take on the role. A new DSP we have has been pretty amazing getting my daughter out in town, out at events, to the dog park, to musical events or whatever is happening.

I was starting to feel like, wow, maybe that will be OK as my daughter’s adult life.

My older daughter has been a real help and blessing since she came home from college at the start of the pandemic. She’s pretty clear that she still intends to pursue some other type of career, though. For now, we appreciate having her with us.

I’ve got other things starting to happen for me, separately from my daughter. Life’s as good as it’s been for us as a family. I certainly want to enjoy that even if there’s harder things coming.

I feel protective about it, this time we have now.

I want to eat it all up because it may not always be this way for very long.

*

I definitely, definitely, definitely feel very strongly about pay for parent caregivers. If I’d had an income from all of the things that I did for my daughter that would have made a world of difference for my family. We would have been in more stable housing. That would have kept us from needing to move all the time. My attention and efforts and time wouldn’t have been on that.

We would have had just a lot more confidence and a lot more calm if we knew that we could be warm, dry, safe and fed, right? Like what everybody needs. And it just was not feasible, at all, for me to earn an income any other way at the same time as doing this caregiving. We also need to have outside care that’s dependable and long enough to do another job, if that’s what the family wants.

But even then, the current systems really rely on the parent as the manager of care. The parent has to recruit and orient and schedule and a lot of times that’s not going to work with another job because there’s going to be too much irregularity in the access to caregivers.

We used to have these huge institutions where families were really, strongly encouraged to send their loved one off if they had high support needs and not see them anymore. And we, rightfully, have shut those down. And then it wasn’t replaced with anything. It’s starting to be now. But it’s just too much in the other direction of insisting on family work.

I really think about it a lot. If I become ill or injured, if I become disabled, I don’t qualify for Social Security Disability (Insurance). The rest of my family’s capacity is spent on my daughter. There’s not anything that would be there for me.

You definitely need the public and the state to take back responsibility for that comprehensiveness and continuity of care. And then on top of that yeah, family can be family. They can be encouraged, and welcomed, and appreciated, but not relied on as the sole provider.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From WBRZ-TV (Louisiana): “Mom trying to protect special needs daughter arrested after sending listening device to school, family says”

WATSON - A woman was arrested after she allegedly sent a recording device to school with her special needs child. 

The Livingston Parish Sheriff's Office said Amanda Carter, 39, was arrested on 20 counts of interception and disclosure of wire, electronic or oral communication. The sheriff's office and the school system announced the arrest in coordinated statements Tuesday afternoon. 

The Livingston Parish school system said it contacted law enforcement after administrators uncovered a recording device on campus. 

Sources close to the family told the WBRZ Investigative Unit that the sheriff's office started investigating the situation after a parent sent a recording device to school with a special needs child, fearing she was being mistreated. The device was reportedly attached to the girl's wheelchair. 

The WBRZ Investigative Unit has reviewed recordings of the child interacted with several unidentified adults at school. 

Those recordings include at least one instance in which someone at the school jokes that they "almost slammed her," in what appears to be a reference to Gracie, who can be heard moaning during the same audio clip.

• From the Lebanon-Democrat (Tennessee): “State forced to keep disabled children in hospitals”

Children taken into the custody of the state Department of Children’s Services are spending upwards of eight months in hospital beds across Tennessee because the agency has nowhere else to put them.

The children typically land in DCS custody after being removed from homes on allegations of abuse or neglect and often carry the dual weight of trauma from their home life — and their sudden removal. The responsibility of DCS, which has a budget of more than $1 billion annually to carry out its mission, is to protect and care for these children.

Instead, DCS officials acknowledge, children are being unnecessarily hospitalized for periods of time that have ranged this year from one day to 264 days.

• From DW (German-based media group): “Why Africa's physically challenged remain 'invisible’”

[…]More than 80 million Africans live with disabilities, according to the United Nations. In addition, the UN has warned that the impact of conflicts in Africa's hot spots has also increased the number of people living with disabilities on the continent.

[…]Like Ghana, Uganda has also enacted a Persons with Disabilities Act which, among others, promotes the education and welfare of disabled people. But stigma remains high, said Robert Nkwangu, the executive secretary of the Uganda National Association of the Deaf, which does advocacy and policy influence for its member

[…]Many potential employers are often hesitant to hire people with disabilities. However, said [president of the Ghana Federation of Disability Organizations Yaw] Ofori-Debra, some employers who have encountered persons with disabilities know their potential.

"You cannot put the blame squarely on them because some have not had any experience with persons with disability," he explained. However, he said, "sometimes disabled people excel in areas where those with abilities cannot."

"I would say the first responsibility of the community is to embrace everybody, regardless of the challenges or impairments they are facing. And that's what we also have been doing in most of the communities we work in," he said.

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

Gratitude researcher Robert Emmons says that gratitude is a way of seeing the big picture and not getting overwhelmed by the day-to-day struggles.

For most of us, it takes conscious effort to be grateful. Gratitude is hard. And gratitude does not excuse injustice. And gratitude is not weak.

“In fact, gratitude can be very difficult because it requires that you recognize your dependence on others, and that’s not always positive,” Emmons writes. “You have to humble yourself, in the sense that you have to become a good receiver of others’ support and generosity. That can be very hard — most people are better givers than receivers.”

While raising any child is difficult beyond measure — and rewarding beyond measure — I would argue that in both of those realms, parenting a disabled child is even more so. Our lows are lower but our highs can be higher.

For today’s issue of Medical Motherhood, let’s talk about the best parts of raising disabled children.

Medical Motherhood is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.

‘Realness’

It’s a certain je ne sais quoi, but I’ve found that most people raising disabled children have a way of skipping all the fakeness in conversations. They just don’t have time for it. Maybe it’s because their hands are too full or maybe it’s because pleasantries just don’t matter after you’ve seen your child in a hospital bed. Whatever it is, I love it. Small talk is overrated. Let’s get real.

Black humor

There’s only so much hardship a human can take. Thankfully, our brains give us a very effective stress relief mechanism: laughter. I can’t tell you how many times I’ve laughed with other medical mamas about things that no one else would understand. One of my favorites was when someone was describing a bad day and said they might just never get up off the kitchen floor. Another mama said: “Laying on the kitchen floor though. Closer to ice cream.” I still think about that and laugh about every other week: The bright side of desperation.

Awareness

The disability community is a vast and varied spectrum. For some reason, mainstream society lumps everyone outside of their narrow bump of the bell curve together, so for a long time I thought of abilities as pretty black and white. But since becoming a medical mama, I’ve learned so much more about how many different ways there are to be beautifully, amazingly, fantastically human.

Empathy

I thought I was pretty open and understanding before I had kids — and it’s not like I’m perfect today — but living this life has opened my eyes to how much privilege I had and assumed other people had, too. Now when people talk about their struggles, I usually “get it” on a level I never would have otherwise.

Humility

I have had to ask for a lot of help since the birth of my twins. Whether it’s fundraisers or places to stay or medical care or physical help, medical motherhood has been a long lesson in accepting that I can’t just do it all. Like Emmons says above, this is not easy. But watching people respond to those calls for help — sometimes even complete strangers — has been some of the most powerful experiences in my entire life. If you have never been in desperate need then you have never known the amazing healing power of someone meeting that need.

Community

If you’ve ever spent time abroad, you probably know about the ex-pat phenomenon of feeling camaraderie with any fellow countrymen you happen to come across. Something about being strangers in a strange land erases any differences you might have otherwise considered important. It’s the same with medical parenthood. As soon as I learn someone has had an intensive caregiving experience, too, it’s like we shift into a different gear.

Surprise celebrations

When milestones are so far off the accepted timeline, they cease to matter. As a parent, you drop out of the competitive rat-race that starts with baby’s first steps and ends at pro soccer. Or, rather, that starts with baby’s first word and ends with scholarships to MIT. Instead, you can celebrate each “inchstone” and wherever it may be leading because none of it is taken for granted.

Anti-ableism

I did not think I was ableist before I had my kids. That quickly changed when I realized just how scared I was of having a kid who might be called the “r-word.” Prejudice is so much more apparent when it’s about you or the people you care about. I feel lucky to have learned the difference between thinking I’m not prejudiced and doing the hard work to root out some hidden assumptions and beliefs. It will still be a lifelong struggle, but I am grateful to have been given new lenses through which to see the world.

A life of service

Service is sacred. Don’t believe me? Ask the leaders of pretty much any religion.

All humans are interconnected. We all need things that have to be provided by someone else. When you raise a disabled child, this service relationship takes primacy. While it is difficult, and no one is immune to the effects of burnout, it is also beautiful. I see so many people who find their life’s purpose and heart’s contentment in medical parenthood.

What about you? What are you grateful for in this uncommon journey? Leave a comment below the news briefs (this is a paid subscriber perk — click link for our 30 percent off sale on now), or post about it on social media. …And: Thank YOU! I am grateful to have you as a reader.

A version of this essay appeared in the Nov. 28, 2021 issue. Archives from the first year of publication are available for paid subscribers only. Become one today with our 30 percent off sale.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From AL.com (Alabama): “Federal complaint: ‘Extreme barriers’ for Alabama adults, children with disabilities to access care”

The Alabama Disabilities Advocacy Program has filed a federal complaint against the Alabama Department of Senior Services, alleging that the agency places “extreme barriers” on disabled children and adults who are trying to access Medicaid services.

The failure to provide services can have serious consequences and the need for reform is urgent, ADAP alleges; two potential clients died while lawyers were preparing the complaint.

The Elderly and Disabled Waiver, which is administered by ADSS and the Alabama Medicaid Agency, helps families receive long-term care in their communities that once were only available in institutional settings. The waiver can pay for in-home medical devices like ventilators and feeding tubes, as well as pay for nurses and health care providers to oversee treatments.

But according to ADAP, the Department of Senior Services has failed to properly administer the waivers over the last three years due to “the failure at the highest level of ADSS to develop and maintain standard procedures for how to administer their waiver programs.”

The advocacy organization, which is representing 13 families in their complaint to the United States Department of Health and Human Services, says the Alabama agency has denied clients services without due process, misrepresented what services are available to families and what services they are entitled to and failed to maintain enough health care providers in their system, leaving family members to have to oversee medical care which can be so time intensive it forces them to leave their jobs.

• From The Oregonian/OregonLive: “Oregon RSV hospitalizations leave state, hospitals and parents juggling uncertainty and fear”

Amid the worst RSV season on record, Oregon pediatric hospitals are already stretching staff thin to care for all young patients who need specialized care. But health officials believe the situation is going to get worse in coming weeks, and it’s unclear what the state and hospitals will do if the influx of respiratory syncytial virus cases reaches a tipping point.

“Hospital resources are not infinite,” the Oregon Health Authority’s Dr. Melissa Sutton said in an interview Friday. “At some point, we might reach a scenario in which there is not a hospital bed available.”

[… OHSU pediatric specialist Dr. Eliza Hayes] Bakken said parents should watch out for the following three key signs of distress when deciding whether to take their children with RSV to the emergency room: If the inside of the infant’s mouth is blue, they aren’t getting enough oxygen, and need immediate care. If they appear to be trying to use their stomach or rib or neck muscles to breathe, that also means they’re not getting enough oxygen. And if they aren’t taking in or holding down fluids, they also need to see a doctor.

• From Kyodo News (Japan): “FOCUS: Japan faces long, difficult road to promote inclusive education”

Satoko Tachibatake is convinced she made the right decision to have her intellectually disabled son attend a regular school with classmates without disabilities, although doing so remains a rare step in Japan.

Like many other disabled children, Tachibatake's 8-year-old son Go, who has Down syndrome, was pointed toward a special needs school by local education authorities as he was judged to have difficulties communicating with words.

What made Tachibatake defy the recommendation was an encounter with a member of a group of parents who also have children with Down syndrome. The member said it is essential that such children associate with those without disabilities in order to function as capable adults later in life.

[…]According to the education ministry, the number of children who receive education in special needs classes or schools has been rising in Japan, bucking the international trend for promoting inclusive education where all children study in the same classrooms.

[….A United Nations] committee recommended Japan "adopt a national action plan on quality inclusive education, with specific targets, time frames and sufficient budget to ensure that all students with disabilities are provided with individualized support at all levels of education."

It was Japan's first time to be subjected to a review since ratifying the Convention on the Rights of Persons with Disabilities in 2014.

Following the recommendation, education minister Keiko Nagaoka said the government will promote inclusive education but also said, "We do not intend to end special needs education, which takes place in diverse learning environments."

Yoshihiro Kokuni, a professor at the University of Tokyo's graduate school of education, said the U.N. recommendation was "an extremely appropriate evaluation," as it was issued after around 100 people consisting of disabled people and their families visited Geneva to exchange views with U.N. panel members.

"Japan is very behind" on the recognition of inclusive education, said Kokuni, a specialist in education. "It's a question of social justice," he said, "not creating a more effective society or one that guarantees a more effective learning environment."

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

Holding Moses, a new short documentary from The New Yorker, is beautifully shot — and hard to watch.

The film is a frank look at medical motherhood through the experience of Randi Rader, a queer single mother who bravely exposes to public view the swirl of intense emotions that come from giving birth to and raising a child with significant disabilities.

Though it is only 17 minutes long, I had a number of reactions to the film. Mostly: gratitude that it had been made and fear about how Rader’s story would be received.

As filmmaker Rivkah Beth Medow says in The New Yorker piece that accompanies the film’s debut:

Caregivers are a “deeply invisible community,” and sharing complicated feelings about caregiving can feel like “taking up space” in a way that feels “selfish, inappropriate, or unacceptable.”

As Medow and co-filmmaker Jen Rainin seem to share my goal of staring unashamedly at this particular life experience, I wanted to riff on the ways Holding Moses matches and doesn’t match my experience and others’.

As Rader says in the film, before she had a child with a rare genetic disorder, she thought that disability was only one thing and that thing was Down syndrome.

“I had no idea the spectrum of disability that exists,” she says in the film.

She — like me — had no idea the huge spectrum of disability that exists in the world (and therefore the range of caregiving experiences) largely because mainstream society only likes to talk about one storyline.

In that respect, that is my biggest criticism of the film. It follows a familiar happy ending arc that folks can feel good about. Prejudice vanquished, love found, Rader and her beautiful family can ride off into the sunset together. The viewer need not do anything more to examine how The Raders could have been better cared for from the very beginning of Moses’ life.

The acceptance story is a good story and a worthy story. But it is only part of the story. Medical motherhood is messier than that. Just on the acceptance front, it is so complex and involves multiple layers of acceptance. Sometimes you find out that something you thought you had accepted, you actually hadn’t. Sometimes you find out that you didn’t actually understand what it was you accepted so you have to accept it all over again. And it often involves accepting even more loss as more abilities are lost or milestones that were never initially considered pass by.

Medical motherhood also involves tussling with multiple school, medical and social services systems to get what your child needs. It involves burnout and isolation and depression. It involves caregiving needs that are always present and never-ending. It involves second-guessing yourself and desperately wishing you’d known before what you know now.

For example, the documentary starts out with Rader describing Moses as being a newborn who didn’t cry much. As a medical mama, I instantly wondered if he was getting enough oxygen or needed other medical attention that she was not aware he needed. Medical mothers often have stories about their concerns about their newborns being brushed off. Until one day, after it’s too late, they are finally taken more seriously.

I enjoyed the physicality that the filmmakers show, both in Rader’s performances (she’s a dancer) and in her caregiving. Caregiving to a child with a disability is full of emotion and up-close physical touch.

While Moses’ “disposition is extremely sweet,” and there are many kids who fit this description, there are other disabilities that directly impact a child’s mood and behavior. This can be either be a direct result of their disorder or through secondary trauma. Those children are difficult to care for and I daresay their disabilities are tougher for their parents to accept.

Fortunately, Rader is bravely raw and frank throughout. At one point, she even admits she wished Moses would die. “It felt very much that I had lost a child,” she says. “That he had died. Yet I was still there with a child that I didn’t understand. I never felt so desperate before.”

But my favorite part of the film, and the one that certainly rings true for me, is that the turning point in her acceptance journey came when Rader met other parents of disabled children. She found that they could relate to her struggles and she could see a future for herself in their lived experience:

“They would just look at me and they’d shake their heads and they’d be like: ‘We know. We know.’”

Watch Holding Moses: Motherhood in the Face of Disability on The New Yorker site or on its YouTube channel.

Quick interjection before we get to the news briefs.

Each week I ask myself: What would be most helpful to you?

OK, maybe it’s more like: What (do I have left to give after all of my caregiving duties that) would be most helpful to you? Because I’m in it, too. I’m right here with you in medical motherhood.

Do you know other people in these trenches? Would reading information and news specific to their needs help them? What a gift: to feel less alone, less afraid, less unsure.

Whether it’s for someone you know, or to renew or upgrade your own subscription, now is the time to do it! Right now we are running a holiday special — 30 percent off any paid subscription for the whole year. The perks of paying for Medical Motherhood include: accessing the Year 1 archives, the ability to post comments and likes, and getting quarterly behind-the-scenes posts and previews. (The regular weekly posts are still free.)

Be a hero, give the power of knowledge. Give Medical Motherhood today, and help sustain this source of information into the New Year.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Understood.org: “Common Thanksgiving challenges for kids with ADHD”

As enjoyable as Thanksgiving is for some families, it can often be a difficult time for kids with ADHD to manage. That’s especially true if the holiday involves gatherings and long sit-down meals. Here are some typical trouble spots and what you can do to help. […]

Key takeaways

Talk with your child about how the day will go before it happens.

The more kids know what to expect, the less chance for anxiety or conflict about the change in routine.

You can even practice some possible dinnertime conversations or interactions beforehand.

• From The Washington Post: “Social Security left at-risk Americans behind in pandemic, report finds”

The abrupt halt to almost all in-person operations at the Social Security Administration during the coronavirus pandemic was debilitating for the most vulnerable Americans, a new report has found — undermining President Biden’s pledge to ensure equitable government services.

With its 1,230 field offices closed for two years, millions of disabled and poor elderly people could not get help applying for Social Security benefits, and for many of them, there was no online option, the Government Accountability Office found in a report released Thursday.

[…]Millions of people filing for retirement benefits went online. But those applying for benefits under Social Security’s two disability programs — the antipoverty program and another for those with work histories — plunged 18 percent and 12 percent, respectively compared to the volume of claims before the pandemic.

[…]The decline was precipitous among disabled children and those who do not speak English.

[…]The report found that without a plan to address an anticipated surge in demand for its services as more at-risk people return to the system, “SSA is poorly positioned to make well-informed decisions about its critical functions.”

• From The Current (Georgia): “Early screening for learning disabilities ‘would make a huge difference’”

Frank Pinckney wonders what his life could have been like if his parents and teachers had believed what he now believes: that as a child he had a learning disability, attention deficit disorder (ADHD) and suffered from trauma after a sexual assault.

As it turned out, none of these problems were diagnosed, which may help explain why Pinckney’s life spiraled into crime and mental illness, and  substance use disorder. 

“The older I got, the more my drug habit escalated,’’ he says. The spiral ended at age 32 with a three-year prison term.

The case of Pinckney, a 62-year-old Black man who grew up in a poor neighborhood in Washington, D.C., illustrates why some experts are calling for increased early testing and screening of children for learning disabilities and differences.        

“If we could do this for kids when they’re little, when they still love to learn, when they’re excited to go to school, before the love of learning has been beaten out of them, it would make a huge difference,” says Teresa Giral, a clinical psychologist who heads a counseling and assessment center in the Maryland suburbs of Washington.

Instead, she says, “we wait for them to fail before we intervene.” 

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

It’s pretty amazing how creative people can get when their medical equipment needs fixing NOW but our systems aren’t set up to move quickly. We currently have a range of fasteners, zip-ties and rubber bands holding various pieces of our son’s wheelchair together. And the battery that our wheelchair supplier said would take a week actually took six. Just another day in a dysfunctional health care system, but thank goodness there are creative and kind-hearted folks able to help.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From the Star Tribune (Minnesota) via Disability Scoop: “For Kids With Severe Behaviors, Hospital ERs Increasingly Becoming De Facto Homes”

MINNEAPOLIS — A distressing situation is unfolding inside the emergency department of Ridgeview Medical Center in Waconia, where a 10-year-old boy with severe autism and aggression has been confined for seven months.

Foster and group homes can’t handle him, so county guardians keep sending him back to the ER, the one place obliged by law to take him in. Without schooling or specialized therapy, the boy and staff are stuck in a cycle of confrontation. Run-ins with nurses, support staff and security guards have compelled some workers to quit and left others bruised and injured.

[…]Children’s Minnesota is opening an inpatient psychiatric unit in St. Paul next month. However, [Ridgeview chief executive Mike] Phelps said the expansion and recent state mental health investments don’t really address this population of kids. More specialized residential treatment and group home facilities are needed, and more staffing is needed to maximize the use of facilities that already exist.

“I can appreciate building inpatient psychiatric beds — that’s great — and investing in outpatient mental health services,” he said. “But this is in between that and it’s a subset of kids who just don’t have a place to go.”

• From The Herald News (Massachusetts): “Poor communication, dismissive staff: Swansea parents air concerns about special education

SWANSEA (Massachusetts) — Parents and family members of disabled students are alleging that Swansea Public Schools has systemic flaws in its special education department, including a culture of poor communication with parents, a tendency to separate special education students from their peers and decisions that amount to discrimination against disabled students.

“This is not a request. This is his right as a human being,” said Melyssa Looker, a mother of a 3-year-old special education student who spoke during the meeting.

The School Committee held a special meeting on Nov. 7 to allow parents and other family members to raise concerns about the special education department.

Several family members relayed that schools at times do an insufficient job of communicating with families and that families have been dismissed and shut down during discussions with school staff about their children’s needs.

“Parents are not treated as experts on their own children… staff who spent two hours with them are,” said Wendy Looker, who spoke on behalf of her grandson.

[…Mother Christine] Aguiar echoed a theme that several other parents touched on, that families have had to maneuver major hurdles just to secure proper services for their children.

• From the BBC: “Lego: 8-year-old says new disabled character is 'amazing’”

Sofia from Sussex was born without a left hand, and said she felt it was really hard to find toys that represented her.

Since she got in touch with Lego, the company have now released a new range of characters of different skin tones, cultures, physical and non-visible disabilities, and neurodiversity, including characters with arm and leg differences, Down Syndrome, anxiety, vitiligo, and a dog with a wheelchair.

A designer director at Lego Friends, the company behind the toys, said her team was "inspired" by Sofia's letter, as well those from other children across the world.

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

Do you smell that, dear reader? Change is in the air.

And no, I don’t mean the changing of the seasons.

For the first time ever, the federal government has collected together the constellation of programs it offers to family caregivers in an attempt to actually coordinate its approach to the needs of this group.

The National Strategy to Support Family Caregivers, released Sept. 21, has 345 actions across 15 federal agencies to “support family caregivers’ health, well-being and financial security.”

This comes on the heels of the Maternal and Child Health Bureau’s Blueprint for Change that I reported on in August (see link below). That was also a first-time-ever culmination of years of study on how to better address the needs of disabled children and those who are caring for them.

Taken together, I’m hoping these initiatives point to a sea change for how parents raising children with chronic health needs are treated and supported in this country. If so, a generation of disabled children could grow up with the resources and care that they need — not just to survive but thrive.

One of the National Strategy to Support Family Caregivers’ primary goals is to increase the number of people who recognize themselves as family caregivers. Well — as the young people say nowadays — consider me influenced. Though it is clear in the report that the stereotypical family caregiver is an older adult caring for an elderly relative, parents of disabled and neurodivergent children are included and should also claim that label and claim their space in these conversations. The feds define a family caregiver as: “an adult family member or other individual who has a significant relationship with, and who provides a broad range of assistance to, an individual with a chronic or other health condition, disability or functional limitation.”

So: I am a family caregiver. Just in time, too, because it turns out it is also National Family Caregivers Month. Spearheaded by the nonprofit Caregiver Action Network, this has happened every November since the Clinton Administration, but it’s the first time I’ve heard of it.

In proclaiming this month National Family Caregivers Month, President Joe Biden said: “The truth is, at some point in our lives, each of us will likely need to be a family caregiver — but the burden falls especially hard on those who cannot afford support.  Women, people of color, and immigrants shoulder a disproportionate share of the obligation, sometimes forced to leave good jobs to instead provide care.  Their work is a profound service to their families and to our Nation, but they are still too often unseen, undervalued, and unpaid.”

Ain’t that the truth.

The Administration for Community Living estimates that lost income due to family caregiving is $522 billion (with a ‘B’) per year. It also says that replacing it with paid services would cost $470 billion every year. (In my mind, that is purely a thought experiment because I don’t believe third-party caregiving will ever, nor should ever, completely replace family.)

The Strategy’s authors seem to agree with that, too, by pointing out how supporting family caregivers saves taxpayer money — not to mention human misery.

“When the challenges become overwhelming and family caregivers no longer can provide support, the people they care for often are left with no choices except moving to nursing homes and other institutions or to foster care — the cost of which is typically borne by taxpayers,” reads ACL’s press release announcing the Strategy.

The Strategy is the product of two new federal bodies formed in 2019. These are the RAISE (Recognize, Assist, Include, Support and Engage) Family Caregiving Advisory Council and the Advisory Council to Support Grandparents Raising Grandchildren. They first started by asking federal agencies to tell them about any programs they had that were aimed at supporting family caregivers. Once this accounting was done, the federal agencies looked at each other’s lists and tried to figure out how they could collaborate or what they could do to more directly support family caregivers.

The Strategy is the list of what the feds think they can do. Happily, these are not vague assertions of how great it would be if someone did something but include several specific policy recommendations, including:

* Allow family caregivers who leave the workforce for caregiving to accrue Social Security credits to qualify for Social Security benefits

* Allow kin and grandparent caregivers who have primary responsibility for a child to claim the federal Child Tax Credit

* Include family caregiver out-of-pocket care expenses (products and services) as medical expenses eligible for tax credits

* Create incentives for health care systems to incorporate family caregivers into health care decision making for the person receiving care

Though a big bolded quote across the top of page 17 points out most caregiving stressors involve money and asks why family caregivers aren’t paid, I could not find a recommendation to do so. I could have missed it among the nearly 350 recommendations but in many places “family caregiver” was juxtaposed with “paid long-term services and support” as if they are distinct groups.

But the Strategy is accepting public comments now through Nov. 30. That means you can tell them what you think the United States could be doing to better “recognize, assist, include, support and engage” family caregivers.

My comments will include some of my drumbeats: Simplify services. Allow parent caregivers to be paid. Acknowledge that the enormous web of services creates a confusing and inefficient system for the end user to navigate and that control over services should be firmly in the hands of the recipient or their guardian.

Perhaps then all the good intentions behind these programs can mean something in the daily lives of those who are just trying to get through the day.

As the President said: “Family caregivers are the backbone of our Nation’s long-term care system, doing essential work with devotion, often at great emotional and financial cost. We owe them. It is time to bring their service out of the shadows and celebrate and support them in living their own happy, healthy, and fulfilling lives.”

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From The Colorado Sun: “Medicaid denials for Colorado children with severe disabilities set off “sheer panic” among parents”

Parents of children with medical needs so severe they need round-the-clock nursing care at home are in “sheer panic” as the state Medicaid program notified them this fall that their services have been denied or reduced. 

At least 20 families have hired legal counsel to fight the denials and about 150 people attended a Medicaid children with disabilities meeting to discuss the denial letters, which were received during the past few weeks. 

[…]The denials, which are sent to families by a state contractor called Kepro, are filled with “glaring errors,” including no notice that state regulation requires that services must stay in place for 60 days after a denial, [Denver attorney Jack Robinson] said. The letters do not even include a date when services will end, Robinson said. 

This month’s turmoil is the latest point of frustration for Medicaid recipients after the department’s switch to the new contractor last year. Kepro, a national company, handles prior-authorization requests submitted by home health providers and agencies that supply private-duty nurses. Earlier this year, after a high number of denials for home-health services, Medicaid officials put the requirement for prior authorization on hold for those services. But prior authorization has been required for private-duty nursing since November.

Families say the vagueness of the denial letters has contributed to their panic, with many worried that their in-home nurses will quit for fear they won’t get paid or that families might end up owing the state Medicaid division money. 

In an emailed announcement Wednesday, the state Medicaid department said it was initiating a “temporary administrative approval process” through Dec. 31 for children who receive private-duty nursing benefits. The action means that families that received denial notices will still have services until Dec. 31.

• From The New York Times: “‘This Is Our March 2020’: Children’s Hospitals Are Overwhelmed by R.S.V.”

A pediatrician in Mount Zion, Ill., sent a video of a 6-month-old named Natalie to a colleague for advice: The infant’s belly was puffing and retracting with every pant as she struggled to breathe, her nostrils flaring and bubbles forming on her lips.

Like dozens of Dr. Caitlyn Berg’s patients in recent weeks, Natalie was infected with respiratory syncytial virus, known as R.S.V. But the nearest hospital had no pediatric intensive care unit, and the one in Springfield — almost an hour west — was completely full.

For Dr. Berg, this case was personal: Natalie is her daughter.

“I try to separate my doctor brain from my mom brain,” she said. “But watching her breathe, I was terrified.”

A drastic and unusually early spike in R.S.V., a respiratory infection that impedes airways, is overwhelming pediatric units across the United States, bringing long waits for treatment and prompting hospital systems to rearrange staffing and resources to meet the demand.

“Every children’s hospital that I’m aware of is absolutely swamped,” said Dr. Coleen Cunningham, the pediatrician in chief at Children’s Hospital of Orange County, a 334-bed facility in Southern California that is so full that children are being treated right in the emergency room as they wait for inpatient beds — sometimes for more than 24 hours.

R.S.V. is a common seasonal infection, and the vast majority of cases are very mild. But this year, the number of children falling ill — and seriously ill — is significantly greater than usual. Doctors suspect that those who would ordinarily have been exposed to R.S.V. over the last couple of years were insulated from it by social distancing measures and are now driving up the numbers.

[…]The onslaught of cases is coinciding with the seasonal burst of other respiratory viruses like rhinoviruses and influenza, plus the ongoing burden of Covid. It is particularly challenging in regions where pediatric units have shrunk or have even been shuttered in recent years, creating bottlenecks in emergency rooms and shifting the strain to children’s hospitals that focus on specialized services like cancer treatment or heart surgery.

Doctors and public health experts are encouraging parents to do whatever they can to protect their children’s health in other ways (such as getting flu shots and Covid boosters) since there is no widely available vaccine for R.S.V.

• From Disability Scoop: “Feds Raise Red Flags About Delayed Special Ed Evaluations, Other IDEA Violations”

New guidance warns that children suspected of having disabilities are waiting too long for evaluations and special education services are not being fully implemented for some young kids in accordance with the Individuals with Disabilities Education Act.

In a joint letter, the U.S. Department of Education’s Office of Special Education Programs and the Department of Health and Human Services’ Office of Head Start are calling out state and local special education directors and Head Start programs for problems that they say have escalated since the COVID-19 pandemic.

“The departments acknowledge that the pandemic continues to present challenges to implementing appropriate programs and services for young children. Further, opportunities for some young children with disabilities to participate in inclusive early childhood settings have been more limited. However, OSEP and OHS want to emphasize that, notwithstanding these challenges, children with disabilities retain their rights under IDEA to receive appropriate special education and related services in accordance with their individualized education programs (IEP),” reads the letter sent last month from Valerie C. Williams, director of the Education Department’s Office of Special Education Programs, and Katie Hamm, acting director of the Office of Head Start at HHS.

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

My husband and I got six minutes into Netflix’s Stranger Things before we turned it off.

It was 2016, our young twins were safely in bed and everyone had been telling us we needed to watch the binge-worthy show. But we got to the first jump scare of the boy riding his bike home in the dark and decided: NOPE.

We had had enough real trauma involving children to last a lifetime. We’d seen true terror on the faces of our own children as they underwent medical procedures or even as they encountered ordinary life struggles that their brains told them were cause for panic.

But now our boys are preteens and each Halloween they want more and more scariness in their life. As we head to a roller coaster or other jitter-inducing attraction, Mack* and I will argue back and forth with him saying: “fun, fun, fun!” as I say: “scary, scary, scary!”

Thanks to Chrissa Paradis, another medical mama in our community, we got to attend our first haunted house this year: ScareGrounds PDX, three fully accessible haunted house attractions.

At first, I hated it. My shoulders — which are already debilitatingly tense from stress and lifting a 70-pound person multiple times a day — felt like they were up to my ears as we walked into the first house. We passed the creepy things and jumped at the loud, sudden noises. All I could think was: How fast will the boys let me get out of here?

But then something happened: I screamed. Or rather, I let myself scream… and then giggle. After that, it was a lot more fun.

As parents to kids with medical emergencies — or the isolating subset of folks who have to deal with the real possibility of child death — visceral terror is not funny or theoretical: It’s some of the most real moments of our lives.

But perhaps, even for us, recreational fear can be healthy.

“As someone with a heavy amount of stored trauma — screaming, the act of literally screaming and releasing — you feel it free some of that,” says medical mama Paradis, producer and director of guest services at ScareGrounds PDX. “It really does have a restorative nature.”

Paradis says it has also been interesting to see how her staff have benefited from creating scares. She says about half of the cast members are LGBTQ and have experienced a lot of struggle in their lives — either coming to terms with themselves or with their family and friends’ reactions.

“They all find that creating the scares and taking that control is very healthy for them,” Paradis says. “So we kind of see it on both sides of how this environment provides some very primal healing.”

She says her medical motherhood journey has influenced a lot about the attraction. All of the sets are fully wheelchair accessible, actors will never touch the audience and there are emergency exits for anyone who isn’t having fun anymore. But an awareness of disability is also part of the storyline. Paradis says that when the team designs haunted houses that are asylums or abandoned hospitals, the fright factor isn’t being stuck in a place with people with mental illness, but rather a maniacal doctor who just might make you his next patient….

It turns out science confirms that screaming, shaking, ghost stories and other forms of recreational fear have therapeutic properties. Much like how wild animals will “shake it off” from head to tail after escaping a predator, human nervous systems can benefit from physical manifestations of trauma and even “scream therapy.”

As Paradis says: “There definitely are some positives to putting yourself in a safe mode where you get to have some genuine scares.”

Before having her daughter, Paradis liked scary movies. But now that she’s been scared out of her mind in real life, even the most well done horror movies don’t do it for her anymore. “My peak is so much higher now than most people.”

Paradis turned 20 when her daughter was a toddler on the brink of death due to an infection. Jasmine survived several medical procedures and now lives with disability.

“I found that I heavily disassociated from the emotional impact of what was happening so I could function,” Paradis says. “Which is something I absolutely still do as an adult.”

Paradis says even when her daughter had a life-threatening illness at 17, she pushed away “how are you doing?” questions to wall off her emotions and focus on the work that needed to be done. She had to, she said, to continue functioning at the highest level her daughter needed.

“Maybe that’s not the greatest for other relationships,” Paradis laughed, “but it keeps me from breaking down.”

Paradis occasionally follows groups through her haunted houses for security and quality control. She’s observed that about 90 percent of the time after people scream, they laugh. “It frees something inside. It just kind of unlocks some of that tension and heaviness.”

If you want to try being scared for fun this Halloween, The Washington Post has some tips. You can try to start slow with children’s movies like Spirited Away or keep the lights on during a scary movie to maintain some distance. Or, go to a haunted house like Paradis’ and let yourself scream. Just be sure to go with friends — it’s always better to have someone to cling to in times of stress.

As for me, I did recently try Stranger Things again. The subplot of medical parenthood was certainly triggery, but safe on my couch, away from the hospital, I could enjoy the show.

Medical Motherhood is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.

*a pseudonym

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From WRAL (Boston): “State probes Boston schools' treatment of disabled students”

MALDEN, MASS. — The state education department is investigating a complaint that claims the rights of children with disabilities in the Boston Public Schools are being violated because the district's bus system is in “disarray,” Education Commissioner Jeffrey Riley said Tuesday.

The complaint filed last week by Greater Boston Legal Services and Massachusetts Advocates for Children on behalf of the parents and guardians of six students with disabilities says children are being being denied an education because of chronically late or canceled buses.

“The systemic disarray of the BPS transportation and special education departments deprives thousands of Boston children, many of whom are low-income students with disabilities and students of color, of what cumulatively amounts to weeks or months of learning time,” the complaint said.

• From The Los Angeles Times: “In California, spending on adults with disabilities differs by ‘race and place’”

The report from Disability Voices United, titled “A Matter of Race and Place,” builds on long-standing concerns about racial disparities at regional centers — a system of nonprofits that are responsible for coordinating services for developmentally disabled children and adults. It also underscores dramatic differences in spending between centers serving different parts of California.

“We shouldn’t have 21 different ways that people are receiving services,” said Judy Mark, president of Disability Voices United, who is also the parent of an adult served by a regional center. “It shouldn’t be based on where you live or what your race or ethnicity is.”

Regional centers provide assistance under contracts with the California Department of Developmental Services, which has invested tens of millions of dollars in recent years to try to close racial and ethnic gaps in spending. Earlier this year, the legal advocacy group Public Counsel found racial disparities had nonetheless persisted in spending on services for children and teens.

[…] Mark faulted a “culture of no” at regional centers that is easier to fight for those with more resources, including white families and English speakers. Fernando Gomez, a parent and co-founder of Integrated Community Collaborative, said “the system is just so hard to navigate.”

• From Disability Scoop: “Disability Service Provider Crisis Worsening, Survey Finds”

Disability service providers across the nation are overwhelmingly turning away new referrals, shutting down programs and services and struggling to maintain standards and there’s no relief in sight.

Findings released this month from a survey of 718 organizations serving people with intellectual and developmental disabilities nationally show that providers are continuing to shrink more than two years after the onset of the COVID-19 pandemic set the beleaguered sector into a tailspin.

Of the providers surveyed, 83% said they are turning away new referrals, 63% indicated that they have discontinued programs and services and more than half said they’re considering further closures. Nearly all respondents said they’ve had trouble achieving quality standards.

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

Invariably there are these two types of stories: The first type is about people — often perfect strangers — showing love, compassion and support for disabled children and their families. Sometimes these can veer into inspiration porn — celebrating disabled people for just doing ordinary things — but for the most part, these are beautiful stories that make me tear up at just how incredibly cool humans can be to one another.

The other type of story — and unfortunately there is at least one every single week — is about how, at a systemic level, we are failing these same children.

How can that be? From special education, to social services, to children’s hospitals, these multibillion-dollar systems exist because of the compassion and support ordinary people show for disabled children. Most of our society thinks this is a worthy population to spend their money on — that’s why they have voted for politicians and taxes and policies to make it so.

In real life, strangers can be amazingly kind to our disabled children. So why don’t we feel supported by the systems they fund?

Often when I ponder this problem, I think of the book I read years ago by Dan Ariely, a behavioral economist now at Duke University. In Predictably Irrational, Ariely lays out the case for two fundamental principles of economic behavior that I think apply here:

1.     Money changes how people feel about tasks. People will do things for free that they wouldn’t do for money.

Imagine if you were grieving and a friend came to your house with a casserole. That would be lovely. Now imagine you paid them $5 to say thanks. That would feel weird and icky. Why is that? They were doing it for free, and now they have an extra $5 — isn’t that a bonus? But no, it wouldn’t feel that way, because they weren’t doing it for money. And, if you start to think about the act of cooking and delivering a casserole in market terms, $5 is a rip-off — the ingredients, time and gas money cost much more than that. Instead of the money feeling like a bonus, it would probably make your friend never want to do that again.

In his book, Ariely says once you cross that line, it’s not easy to go back either. “When a social norm collides with a market norm,” he writes, “the social norm goes away for a long time. In other words, social relationships are not easy to reestablish. Once the bloom is off the rose — once a social norm is trumped by a market norm — it will rarely return.”

2.     Distancing money from the source means people treat it differently. People treat cash more honestly than tokens bought with cash.

“When we look at the world around us, much of the dishonesty we see involves cheating that is one step removed from cash,” Ariely writes.

Normally, when we gift money directly to people in need, both people feel good. But in tax-funded programs and even some charity donations, the source of the money is removed from the recipient of the money by so many layers that — often — both feel bad about the transaction.

In some ways, I can see the need for large, highly complex organizations to combat the large, highly complex problems of our massive human population. But for the most part, I believe that services would be more effective if they were MUCH more simple and direct. The last thing people in a crisis need are lengthy, opaque and complicated processes to aid — yet those are exactly the services on offer today. Similarly, the people who get into care work fields did so because they want to help, not so they could make a quick buck. They need much fewer barriers to providing that help.

Some people will take this argument to mean that we shouldn’t pay family caregivers or parents as caregivers, as I have long argued for. But parents’ care for their children goes beyond market forces. The parents I’ve spoken to see the economic resources as the path to their children’s care and wellbeing, rather than the other way around.

The more we spend on “services” to do things for other people, rather than just letting the needy direct the resources themselves, the worse the outcomes. This is why “person-centered planning” and “individual education plans” are such buzzwords. These are systems trying to get the players to interact on a human-to-human level.

Our society has tried for decades to get a system of care that replaces the work that loving family does and it rarely works.

A paper out this month from the University of Minnesota’s Institute on Community Integration shows that most people with I/DD live with family for their entire lives — a trend that is only growing over time.

“Public policies that focus scarce long-term services and supports (LTSS) resources on non-family settings at the expense of people living with family members fail to honor the critical role families play,” reads the report. At the same time, these families make sacrifices to do so — further straining public resources.

“Families supporting a child or adult with IDD report that caregiving requires them to periodically go into work late, leave early or take time off to provide care (91%), cut back their hours of work (55%), or give up work entirely (32%). Only 34% of family caregivers report being in excellent or very good health, and 94% were somewhat, very, or extremely stressed (Anderson, et al., 2018).”

The simple fact is this: You can’t pay someone to care. Caring is a spiritual endeavor, not an economic one. The amazing people who have cared about my children have done so despite being paid, not because of it.

At the same time, most of them never would have met my kids if there hadn’t been a system to pay them to help. And I believe strongly that such jobs of public service are the backbone of any human society and deserve to be richly compensated.

So here we sit at this paradox: We need well-funded systems of care and we also need families and communities that do the work from a deeper place of love.

How do we get our systems to be more responsive to the needs of the people they were designed to help — when the very act of paying people makes them more limited in what they are willing to do?

I think you know my answer. Parents care about their disabled and neurodivergent children, whether or not they are paid. People with I/DD are brilliant, capable and experts on their own needs. All of us willing to go to enormous lengths to stretch a dollar and to find the right idiosyncratic solutions to our particular problems, if given the chance.

We need to let the general public’s compassion shine through our systems of care with a little more honesty, a little more trust, a little more direct support and a lot less patronization.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From KRQE: “Parents of kids with disabilities say New Mexico is failing them”

Amariz [Cortez] is one of about 250 children [in New Mexico] considered medically fragile. She was approved for the State’s Medicaid waiver program, which should be providing an in-home nurse. “However, the idea of having a nurse come into our home — to help with —  to meet Amariz’s needs has always been a distant wish,” [her mom] Alicia [Cortez] said. 

At most, Amariz’s family said she received 20 hours for about a month or two in 2020. She requires 40 hours, according to an assessment conducted through the University of New Mexico’s Center for Development and Disability. So, the Cortezes submitted written requests. The response? Alicia said she was told to go through the appeals process. She questioned, “Why should me and my daughter, or anybody on the medically fragile waiver program or any state aid program like this, have to jump through fiery hoops to be able to get the most basic of services that this waiver provides?” 

Tired of asking, the Cortez Family sued. And they are not the only ones. 

In the federal lawsuit, they and three other New Mexican families call out the Department of Human Services. The state agency gives Medicaid dollars to three insurance companies – Blue Cross and Blue Shield of New Mexico, Western Sky Community Care, Inc., and Presbyterian Health Plan, Inc. – to pay for nursing services. The families claim those three are pocketing the taxpayer money rather than providing nurses. 

• From Pamplin Media Group in Portland, Ore.: “A mother, a boy and an uphill battle”

"We are invisible," [Sonia] Landi said of families like hers. It's not just the state system that overlooks the realities of developmental and physical disabilities. She recalled a school fundraiser that brought in money for school supplies, but services and supplies for children with disabilities weren't included.

In fact, Landi and her spouse spend thousands of dollars each year for an attorney, just to make sure her son's school follows his Individualized Education Plan, as required by federal law.

"We don't go out to the restaurant, fine. I pay the lawyer," Landi said, noting the small things her family goes without to make sure there is money to cover her son's care and right to adequate education. "Last year, I paid $3,000 to support my child's education. People are disconnected from the reality of families like mine."

• From KRCR in Redding, California: “C.A.S.T for Kids gives disabled children the tools to fish”

CAST for Kids is a national nonprofit organization that hosts events all over the country, and uses the sport of fishing as a way to unite and encourage disabled kids within the community.

[…]Many people within the Shasta [Lake] community have volunteered their time to either help on the shore or help on the boats. 20 fishermen, some, even from out of town, made the trip out to volunteer their time and their boat for the morning.

One fisherman tells KRCR “this is the 5th or 6th year I've done CAST for Kids. I had a great time today truly is such a fun time and learning experience for the kids”

One father who brings his daughter every year mentioned his gratitude for this program and how much his daughter looks forward to it. “We are just very grateful for the people who made the event happen for their generosity and hospitality and she loves it.”

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

“I’m famous!” my son exclaimed when I showed him pictures of himself on the Travel Portland website.

My guys have always loved the limelight and they have always loved to travel. So it was an exciting day when Travel Portland published my compendium of accessibility accommodations at attractions in and around our metro area.

Check it out here: https://www.travelportland.com/plan/accessible-portland/

In addition to my real-life research buddies — whom you can see testing out attractions like the Oregon Zoo and the Oregon Museum of Science and Industry — I also visited, called and searched places for accessibility options. I was pleasantly surprised to learn how many places have been putting at least some thought into the needs of the entire community. Many attractions have webpages you can find just by inserting the name of the location and “accessibility guide” into Google. For example, the Portland Art Museum has an entire staff member dedicated to accessibility and the Portland International Airport has a number of greater-than-standard accommodations, such as a sensory space that’s not just for kids.

The list was designed to be a quick hit on all of the major attractions with links to learn more. It’s a fairly extensive list but of course I could have written a lot more on each attraction.

As I said in the piece, it’s not all sunshine and roses in the rainy City of Roses — there is room for improvement at all the attractions. But the more people travel and talk about these needs, the faster they will improve.

Whether you’re local to Portland or just planning a trip, check out the guide to see what you can expect.

Medical Motherhood is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From The New York Times: “As Hospitals Close Children’s Units, Where Does That Leave Lachlan?”

“We’re always preparing for battle. It’s just a question of where we’re going to fight,” said his mother, Aurora Rutledge, looking frightened as she twisted the blond ringlets that poked out from under Lachlan’s Spider-Man headphones.

Hospitals around the country, from regional medical centers to smaller local facilities are closing down pediatric units. The reason is stark economics: Institutions make more money from adult patients.

In April, Henrico Doctors’ Hospital in Richmond, Va., ended its pediatric inpatient services. In July, Tufts Children’s Hospital in Boston followed suit. Shriners Children’s New England said it will close its inpatient unit by the end of the year. Pediatric units in Colorado Springs, Raleigh, N.C., and Doylestown, Pa., have closed as well.

“They’re asking: Should we take care of kids we don’t make any money off of, or use the bed for an adult who needs a bunch of expensive tests?” said Dr. Daniel Rauch, chief of pediatric hospital medicine for Tufts Medicine, who headed its general pediatric unit until it closed over the summer. “If you’re a hospital, that’s a no-brainer.”

Many hospitals have converted children’s beds to adult I.C.U. beds during the pandemic and are reluctant to change them back. Now, staff shortages, inflation — drug costs have increased 37 percent per patient compared to prepandemic levels — low Medicaid reimbursement and dwindling federal subsidies granted during the pandemic have left some health centers operating on negative margins and eager to prioritize the most profitable patients.

[…]The decline of local access to children’s inpatient care began over a decade ago and accelerated during the pandemic. Between 2008 and 2018 — the most recent national data available — pediatric inpatient units in the United States decreased almost 20 percent, and nearly a quarter of children found themselves farther from their nearest pediatric unit.

The steepest decline in pediatric inpatient beds was in rural regions, where large health systems acquired community hospitals and consolidated pediatrics to one campus.

Centering pediatric care in specialized centers can erode a local hospital’s ability to care for a critically ill child, doctors say.

“Children are not small adults,” said Dr. Meredith Volle, a pediatrician at Southern Illinois University School of Medicine in Springfield, Ill., who routinely sees patients who travel from two to three hours away. The number of pediatric beds in Illinois has declined, and 48 of its counties now have no pediatrician at all.

[…]Critically ill children are four times as likely to die in hospitals and twice as likely to die in trauma centers that scored low on a “pediatric readiness” test, according to research. Only one-third of children in a national research survey had access to an emergency department deemed highly “pediatric-ready,” and of those, nine out of 10 lived closer to a less-prepared one.

A parent who is unaware of the wide variability, said Dr. Katherine Remick, the executive director of the National Pediatric Readiness Quality Initiative, “could make a split-second decision that changes their child’s fate.”

• From Alabama Political Reporter: “DOJ: Alabama segregates disabled foster kids into inferior schools”

Alabama is providing inadequate education to disabled children in foster care, according to findings released by the U.S. Department of Justice Wednesday.

The report finds that Specialized Treatment Centers (STCs) on the campuses of Alabama’s psychiatric residential treatment facilities (PRTFs) fail to meet the standards of the Americans with Disabilities Act.

“While some Alabama agencies refer to STCs as ‘on-site schools,’ they differ in numerous and substantial ways from a general education school, including in their physical attributes, the multi-grade composition of the classes, their heavy reliance on online programs in classrooms without certified staff, and an overall and profound lack of resources,” the DOJ said in its findings. “Many STCs also lack grade-appropriate curricula; provide insufficient instructional services and supports, including through their use of shortened school days; and are often unable to provide students with access to facilities that are common in general education settings, such as libraries, gyms, and science labs, or opportunities to participate in sports and extracurricular activities.”

• From The New York Times Opinion section (this one looks particularly cool on a mobile phone): “Can you punish a child's mental health problems away?”

The industry depends on desperate, often compassionate parents, some of whom fall for slick marketing.

Brenda Ballard is the grandparent and legal guardian of Mi’Cayla, a teen in North Carolina who has struggled with suicidal thoughts for years. Ms. Ballard told us about frequently having to stay up through the night to keep watch on Mi’Cayla. On her last legs and worried she might lose her granddaughter, Ms. Ballard turned to the industry for help and sent her to a series of residential treatment facilities.

But last year, after Mi’Cayla told her about being attacked by another patient, according to Ms. Ballard, the program retaliated and restricted communication between Mi’Cayla and her grandmother — even though that’s illegal in the state. Ms. Ballard said she felt trapped, unable to find out what was happening to her granddaughter.

[Universal Health Services] and others have denied that they illegally restrict communication. But some institutions have said they deploy the practice to keep children focused on the program. That also keeps what happens inside inside.

• From Disability Scoop: “Researchers: Majority Of Kids With ASD Miss Out On Early Intervention”

By using data collected between 2006 and 2016 through an autism monitoring system at the Rutgers New Jersey Medical School, researchers analyzed medical and special education records for 23,441 8-year-olds in Essex, Hudson, Ocean and Union counties. They found that 4,050 of the children qualified for an autism diagnosis, yet only 1,887 had received early intervention before turning 3.

Moreover, the study found that certain factors appeared to influence the odds that children received services as toddlers, with those from wealthier areas 80% more likely to have participated in early intervention and Black and Hispanic children less likely to have accessed the program.

[Lead author Josephine] Shenouda said it’s unclear why these disparities exist, but they could be due to lower rates of autism screening or simply differences in how likely families are to follow up on recommendations. She indicated that the findings show that more work is needed to ensure broader access to services.

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

American health care at its finest. You would think if anyone understood the extraordinary amount of coordination it takes to get to an appointment with a medically complex or neurodivergent kiddo, it would be medical providers. But in fact it often seems as if the opposite is true. If only they could walk a week in our shoes….

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From the Reno Gazette Journal: “Department of Justice investigation: Nevada fails to provide adequate care for children with disabilities”

An investigation by the Department of Justice revealed that the State of Nevada violated the Americans with Disabilities Act. 

The investigation revealed that the state fails "to provide adequate community-based services to children with behavioral health disabilities." 

Instead of allowing children to stay with their families with the support of "necessary, community-based services," the state sends children to hospitals and residential treatment facilities, some of which are located outside of the state, according to a DOJ press statement released Tuesday. 

Community-based services such as intensive in-home services, crisis services, intensive care coordination, respite, therapeutic foster care and other family-based supports are lacking in Nevada, according to the press statement. 

“Children with disabilities should receive the services they need to remain with their families and in their communities,” Assistant Attorney General Kristen Clarke of the Justice Department’s Civil Rights Division said in the statement. “The Civil Rights Division looks forward to working with Nevada to bring the State into compliance with federal law and prevent the unnecessary institutionalization of children.”

• From the Associated Press via the Los Angeles Times: “Senators call for stronger rules for students with disabilities”

WASHINGTON [DC] —  Two Democratic senators urged the Education Department on Wednesday to strengthen regulations against quietly excluding kids from class because of behaviors related to a disability — a practice known as informal removal.

Since the pandemic began, parents of children with disabilities say the practice is on the rise, denying their kids the legal right to an education. Disability rights advocates and legal experts say the removals likely circumvent protections for these children, who are not supposed to be disciplined because of their disability.

In a report Tuesday, the Associated Press and the Hechinger Report documented the effect of these informal removals on children and families. In interviews with 20 families in 10 states, parents said they were called repeatedly, sometimes less than an hour into the school day, to pick up their children. Some said they left work so frequently they lost their jobs.

• From the Joseph Rowentree Foundation (press release): “JRF in Scotland asks what more evidence governments need to target help at those who need it most as huge survey reveals a nation in ‘crisis-mode’”

Joseph Rowntree Foundation in Scotland asks what more evidence governments need to target help at those who need it most as huge survey reveals a nation in ‘crisis-mode’

* What we believe is the biggest poll of its kind in Scotland finds one in five low-income households went cold and hungry at the same time this year

* Many families wilfully ignored by UK Government fear for the worst as they desperately cut back on spending

* Four in five families with a baby said the cost-of-living crisis is having a negative impact on their mental health

* JRF urges both the UK and Scottish Government to treat cost of living crisis as seriously as the Covid pandemic by making more cash support available and advertising available help more vigorously

A new report from the Joseph Rowntree Foundation in Scotland paints a bleak picture of a nation in crisis mode after the fiercest attack on our standard of living in a lifetime.

The report which includes heart-breaking testimonies from thousands of families struggling to come to terms with the extent of the cost-of-living crisis begs questions of why the new UK Government saw it fit to wilfully ignore their reality in its response to the unfolding emergency.Last month, JRF criticised the “mini budget” as one that left those on the lowest incomes out in the cold with no extra help to get them through the winter. Just last week, the UK government made the morally indefensible suggestion that they would not go ahead with the promised uprating of benefits in line with inflation, adding to the terror felt by many about the months to come. It cannot be right that the UK Government should seek to fund tax cuts for the wealthiest on the backs of those with the least.

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

I’m racing down the freeway at 1:59 p.m. with my heart in my throat.

The sheer number of balls I am trying to keep in the air takes my breath away.

I have 11 minutes until I have to be home to greet my twins coming off their school bus. Because they ride the special education bus, I must be present when they get home.

One problem: I am miles away from my house.

This is a typical Tuesday in 2015 when I worked as a newspaper reporter. I have proofread the front page, waved goodbye to my coworkers and raced down the stairs to my car. 

“This is unsustainable,” a voice in my head says as I watch the needle hover just below 65 mph. “You can’t juggle all these balls. Your body can’t take this much stress.”

I push on the gas. 

You may have heard of this struggle before. Many articles and books outline the sheer impossibility of modern American women to “have it all” — a successful work-family balance. 

It doesn’t have to be this way. In Making Motherhood Work, sociologist Caitlyn Collins lays out a compelling case for how public policy could help with that balance. In her interviews with dozens of women from four different countries, she shows how mothers’ stress levels and ability to hold on to a job are dramatically different in countries with better family leave and public childcare programs.

“Raising children well is in a country’s collective best interest,” Collins writes in her 2019 book. “And yet US society leaves parents, mostly mothers, on their own to accomplish this herculean goal that benefits everyone.”

Unfortunately, this problem becomes even more pronounced for mothers of disabled children. 

Even when I was working full time, I couldn’t afford the childcare I needed — I made less per hour than a nanny would to care for two neurotypical kids. Two disabled kids? Forget about it. Qualified private babysitters for disabled kids are rare and expensive. 

As it was, I “splurged” for no-school-day daycare at the one place in my town that would willingly take a 5-year-old wheelchair user still in diapers and another who climbed fences and acted out. (The law here says that all daycares have to be “willing” to take disabled kids… but would you really leave your child with someone you had to force by law?) 

My state, Oregon, does offer a Medicaid waiver program that will pay for an in-home caregiver. Although the program is a lifesaver, it is not to be confused with childcare. In-home caregivers aren’t allowed to: work while the parents are away; to care for any other children; to do any tasks not directly related to the additional care needs of the child client; to be working during school hours; nor to have their low government wages supplemented by any parents with the ability to do so.

And then there’s the fact that I’ve gone through multiple promising hires who simply never show up to work.

This is not just a problem for people with lower incomes, like me. A friend of mine is a registered nurse. Instead of performing medical and care tasks for her disabled daughter, Lisa Ledson could make good money performing them for strangers. But the amount of care coordination her daughter requires means she has had to drastically reduce her hours. Ledson calculates she has missed out on about $60,000 a year in income since her twins were born. It is an economic hit she didn’t have to take when her neurotypical son was born 14 years earlier. 

“I have calculated the hours I’ve spent over the past 26 days on (my daughter’s) IEP, medical insurance, equipment ordering, appointments, DME coordination and medications,” she texted me the other day, using acronyms for the school district’s Individual Education Plan process and for Durable Medical Equipment suppliers. “I have logged, on average, 7.15 hours per day. Where do we find time for anything else? WTF?”

In fact, we can’t. And there’s a body of scientific evidence to show we are not alone. 

“Care needs of children with severe disabilities are significantly greater than those of non-disabled children and do not decrease with advancing age,” reads this 2001 study from the U.K. “Mothers of children with disabilities are unable to work outside the home because of these care needs. This brings the family income, even when benefits are included, to a level that is less than peer families with non-disabled children.”

In this 2014 study, researchers found that parents typically spent about 33 additional hours per week caring for disabled children.

This review of studies from 1989 to 2005 concluded the financial, physical and mental toll of caring for disabled children was “substantial.” It goes on to say that “…in order to meet their child's needs, families who care for a child with a disability are more likely to be single income families with lower quality jobs yielding lower incomes, to live in poor quality housing, and to live in poverty. …Moreover, parents of a disabled child require more time off work and are more likely to work reduced hours and to decline overtime.”

This is a phenomenon the world over.

UNICEF just released a report highlighting that the poverty gap between people with and without disabilities exceeded 20 percent in most countries. This was due to the expense of their care but also to the indirect costs of them and their family members being unable to work.  

“If family members of a person with disabilities are employed, the type and extent of work they can do might be limited. Caring for a family member for only a few hours a day can preclude paid work, depending on the flexibility of scheduling,” reads the 2021 report.

This has long-term impacts to the economic success of people with disabilities, and their families of origin.

As one mama of a 16-year-old told me: “It’s been heartbreaking to watch other families get stronger financially, parents of teens getting freedom, and I’m still struggling.”

I pull onto my street and there it is: The small yellow bus pulling up to my curb, a quarter of a mile away. 

I made it! I’m coming! I yell at my kids in my mind. I know how intolerable waiting is for them. The ambulatory twin is probably out of his seat already, against the rules. The driver won’t open the bus door until he sees me, for fear that my son will run off. And the district doesn’t allow the driver to unstrap my other twin’s wheelchair.

If I’m too late, the bus will leave. They will complete their 45-minute route and then deliver my kids back to the school building for me to pick them up. My children do not take changes to their routine well and would surely scream the whole way. I can’t imagine how traumatized they (and the bus driver) would be by the end of that. 

I pull into my driveway and leap out of the car to wave at the driver.

I made it.

But, somehow, I still feel like I can’t breathe. 

Medical Motherhood is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.

A version of this essay ran in Medical Motherhood on June 20, 2021.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From the Kansas Reflector: “Parents of disabled kids urge Kansas lawmakers to expand aid and fix issues with health care system”

TOPEKA — A Kansas mother struggling to balance treating her cancer with caring for her disabled children urged lawmakers Monday to provide more support for people like her.

Kathy Keck, a mother of five kids, three of whom have developmental and medical disabilities, said she left the workforce more than five years ago to care for her children. Now, with a mastectomy scheduled, Keck said she doesn’t know who will watch them while she is recovering. 

According to Keck, her daughter’s full-time nurse covers 52 hour a week, and her husband, a full-time nurse, handles 40 hours of child care per week, leaving Keck in charge of her daughter for about 76 hours per week. Keck doesn’t know what to do for her six- to eight-week mastectomy recuperation period, where she won’t be able to do any heavy lifting.

“I too have concerns about another mastectomy, but the biggest cause of stress and anxiety is not knowing how I will care for two of my three disabled children/adults long enough to take care of my own medical needs and recover with the ongoing workforce crisis,” Keck said in testimony submitted to the Robert G. Bethell Joint Committee on Home and Community Based Services and KanCare Oversight. 

Keck asked lawmakers at the meeting to address systemic issues by increasing medically necessary nursing care for children on the Technology Assisted Waiver, a Kansan waiver that provides people with services such as personalized medical care, and find ways to address the statewide shortage of qualified health care workers. 

Keck said the KanCare system, the state-administered form of Medicaid in Kansas, needs to be fixed. 

“What is happening in our system is a lot like cancer,” Keck said.

• From The 74 via Disability Scoop: “Lawsuit: Parents Say Special Education Cases Are Rigged Against Them”

Virginia’s courts routinely rule against parents of students with disabilities who sue to ensure their children are receiving an appropriate education, according to a class action lawsuit filed in federal court last week.

The suit names the Fairfax County Public Schools in northern Virginia as well as the state department of education, which trains and certifies hearing officers to review parent complaints. The suit alleges the state maintains a list of “school-friendly hearing officers” who are more likely to rule against families that challenge district decisions about services for their children.

Trevor and Vivian Chaplick, parents of a Fairfax student with autism, ADHD and other “profound” disabilities, along with a nonprofit they’ve created, filed the suit on behalf of all students in the state who participated in due process proceedings since 2010. Virginia state Superintendent Jillian Balow and Fairfax schools Superintendent Michelle Reid — last year’s national superintendent of the year — are also named as defendants.

“Due process is a parent’s recourse if something goes wrong,” said Callie Oettinger, a Fairfax parent who runs a watchdog websitedocumenting special education complaints in the district. “What happens is they lawyer up and they’ll spend millions fighting you.”

The lawsuit comes as parents across the state are seeking compensatory — or make-up — services due to school closures during the pandemic. Under the Individuals with Disabilities Education Act, districts are required to evaluate and provide services to students if educators failed to follow a child’s individualized education program, or IEP. But the lawsuit claims Virginia’s system was rigged against parents long before the pandemic.

• From The Washington Post: “A boy with cancer hoped to see monsters. Hundreds of strangers showed up in costume.”

Alexandros Hurdakis was less than a year old when his parents received a devastating diagnosis: Their baby had brain cancer.

It was the most harrowing news they could have imagined, until two weeks ago, when the Hurdakises were told there was nothing more doctors could do to save their son, now 5.

The treatments that kept him alive for the past four years were failing, doctors explained, and Alexandros — who goes by Alex — had only a few weeks, or perhaps even days, to live. Alex still wanted to fight the disease.

“He is the strongest person I’ve met,” said Alex’s father, Nick Hurdakis, 33, who lives with his wife, Kira, and their three children in Hamilton, Ontario.

Alex’s parents wanted to make his remaining time as meaningful as possible. They asked him if there was anything that he still wished to experience. His response: Halloween. Specifically, he wanted to see monsters.

[…]With the help of several community members, [family friend Paula] Tzouanakis Anderson was able to get in touch with local officials and block off the main road.

On the day of the event — Sept. 14 — Tzouanakis Anderson expected 300 people to attend, at most. But as the evening progressed, “probably close to 1,000 people showed up,” she said.

The Hurdakis family was floored.

“It was surprising and amazing,” said Hurdakis, who works in construction. “We never expected something like that. It was beautiful.”

Alex, for his part, “was very happy,” his father said. “He loved it.”

[…]

“It’s just an inherently touching story,” [volunteer Hayley] Trickett said. “I don’t think there are many people that wouldn’t want to try and achieve the wishes of a 5-year-old with a terminal illness.”

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

This is a story that has everything: Fear, intrigue, humor, mystery, outrage, courtroom drama, and — two of my favorite things — a debate over disability policy and a healthy dose of media criticism.

This is the story of how my friend Kelsey Smith became a viral story overnight thanks to some odd circumstances she caught on video. She was on all of our local news channels, and as far away as Milwaukee, Wisconsin, the national news, and even in the United Kingdom. The headlines and repackaging of her story bordered on the absurd, with The Daily Mail calling her husband a “trickster” and Fox News’ headline screaming that she was “outraged” at “Dem-run” Portland, Oregon, which she actually loves and has lived in all her life. (The headline has since been changed with no correction issued.)

Here’s what really happened: about 1:30 p.m. on Monday, Sept. 12, a woman named Terri Zinser simply walked up to Kelsey’s front door and let herself in. Zinser has a pattern of doing this and a history of mental health needs. She soon found a king bed belonging to Kelsey’s 10-year-old son and curled up behind a pile of clean, unfolded laundry. Hilariously, Kelsey’s tiny chihuahua barked relentlessly at the intruder while Kelsey’s big Labrador just hopped up on the bed to make friends with the lady.

Zinser lay there for just a few seconds before Kelsey — who was on the phone with her son’s physical therapist — walked into the room to figure out what her chihuahua was barking at. At first, she thought it was her husband (who is a pretty stoic guy and not much of a trickster) curled up for a nap and exclaimed: “Oh my God, Justin!” But then Kelsey moved in for a closer look.

She told her friend on the phone that she needed help because a “homeless man” was in her son’s bed. Zinser, who was completely unbothered up to that point, then got up and threw a small ottoman at Kelsey. Kelsey yelled “Go!” and corralled her towards the front door. Zinser left… Riley trailing along behind her, tail wagging, still hoping to make a friend.

Most of the news stories add something about how the District Attorney in Portland (actually, its county, Multnomah) declined to press charges against Zinser. She had reportedly peed on Kelsey’s neighbor’s property and tried to enter another’s house. In fact, the District Attorney is now pressing charges due to the pattern of this behavior, the lack of alternative solutions… and the pressure from the viral storm of media coverage.

Most news stories stop there. Everyone picks a side. Everyone laughs or gets angry and moves on.

I was never very good at stopping there. I always wanted to know the deeper story.

Kelsey says the three questions commenters have asked thousands of times across platforms are: How did she stay so calm? Why does she have a camera in her child’s bedroom? And why didn’t she shoot the intruder?

The answer to all three of those have to do with Kelsey’s life as a medical mama.

Kelsey is a pretty open book. She shares a lot on social media, so it was natural for her to share the Ring camera footage of this bizarre incident as soon as she realized she had it.

Most of her sharing is about her kids. Kelsey is the mother of four as well as a foster parent. She knew not to freak out but calmly and firmly give direction because she’s had children with mental health disorders in her house. As for why she has a camera in her son’s bedroom, Taran (who was at school that day) is medically fragile and needs constant monitoring.

Finally, why didn’t she shoot the intruder? Because Kelsey understands that mental health disorders should not be a death sentence.

“I mean, I’m glad in a way that she picked my house because I have a medically fragile child and I’ve had my share of stressful situations,” she told News Nation. “You know, being a parent to a child with disabilities as well as a foster parent, I’m acutely aware of the repercussions of the gaps in services to these communities.”

Kelsey was not outraged that the D.A. didn’t lock up the intruder and throw away the key. She is outraged that the system has so clearly failed Terri and that the conversations around this incident have fallen into the same old tired patterns.

“It’s easy to look at this person and see someone who’s ‘crazy’ or ‘drug-fueled’ but we have to look at the bigger picture,” she said. “Our support systems have visibly failed her. And while I don’t even pretend to guess what her childhood or early adulthood entailed, as a mother of a child with disabilities, I can speak to the importance of stabilizing and providing adequate mental health supports to families experiencing disability — whether it’s physical, mental or behavioral.”

Now, nearly two weeks later, she is just hopeful that something good will come from this. She is directing people to the advocacy group we are both a part of: Advocates for Disability Supports and using her 15 minutes of fame to try to elevate the conversation.

“The mental health crisis is at the bottom of all of these issues,” she told me.

Read more:

It’s not about Portland versus the rest of the county, Democrat versus Republican, spending more on social supports versus spending less. It’s about properly supporting disabled people and their families.

“If she and her family had had the right supports from the beginning, this could have had a completely different outcome,” Kelsey said. “She could have been sleeping in her own bed.”

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From New York Times Magazine: “What a High-Risk Pregnancy Looks Like After Dobbs”

[…]Everything changed on the day of the Dobbs decision, June 24. By the end of that Friday, a three-year-old law had been triggered into effect, a so-called “heartbeat bill” that made it a felony to terminate a pregnancy after a fetal heartbeat has been detected. A heartbeat can generally be detected at around six gestational weeks, before many women know they are pregnant; previously abortions were permitted, with restrictions, until 22 gestational weeks. All of a sudden, most of the termination procedures scheduled a week earlier by the Cleveland Clinic were now crimes. Only three exceptions allowed for abortions after the new cutoff: to prevent the mother’s death; to forestall a “serious risk of the substantial and irreversible impairment of a major bodily function of the pregnant woman”; and to respond to ectopic pregnancies, in which a fertilized egg implants itself outside the uterus.

The uncertainties about how to interpret and deliver care in response to those exceptions meant the Cleveland Clinic personnel had to continue doing their jobs in unclear legal circumstances. How do you know if a mother’s life is at risk? How do you predict, then prove, that the mother faces potentially irreversible bodily damage? “As physicians, we literally take an oath to take care of patients,” says Dr. Stacey Ehrenberg, who specializes in high-risk pregnancies at the Cleveland Clinic. “And we now have our hands tied.”

Once the heartbeat bill became law, routine procedures for treating miscarriage — which is how at least one in 10 pregnancies ends — could be considered abortions. The most effective drugs used in cases of miscarriage, mifepristone and misoprostol, are the same ones used to induce abortion by medication; the surgical evacuation of the uterus is another procedure used with miscarriages that is also an abortion method. The new law means that most patients admitted to the Cleveland Clinic Emergency Department while miscarrying are supposed to wait for 24 hours before receiving treatment — treatment given earlier than that could be considered an illegal abortion. […]

• From Disability Scoop: “In First, Feds Issue National Strategy To Support Family Caregivers”

Federal health officials are putting forth a national strategy to address the needs of family caregivers, acknowledging the challenges faced by millions who care for people with developmental disabilities and other issues.

The first-of-its-kind plan details 345 actions that 15 government agencies will take in the next three years as well as over 150 actions that can be undertaken by states, communities and other stakeholders.

“Supporting family caregivers is an urgent public health issue, exacerbated by the long-term effects of the COVID-19 pandemic,” said U.S. Secretary of Health and Human Services Xavier Becerra. “This national strategy recognizes the critical role family caregivers play in a loved one’s life.”

There are estimated to be some 53 million family caregivers in the U.S. supporting those with developmental disabilities, individuals who are aging and others. They “provide the overwhelming majority of long-term care” in this country and, if replaced by paid caregivers, their services would cost an estimated $470 billion annually, according to the Department of Health and Human Services.

Without support, family caregivers can compromise their own health, wellbeing and quality of life, officials note. In addition, caregiving responsibilities result in an estimated $522 billion annually in lost income for families. […]

• From People magazine: “Rosie O'Donnell Opens Up About Her Daughter with Autism in Emotional Essay: 'She's a Gift'"

[…] Getting the diagnosis felt like I was punched in the stomach. I had to give myself a moment to go, "Okay, we're going to figure out how to get through it."

You can read as much as possible, but they say when you meet one person with autism, you've met one person with autism. It's a spectrum. For me — it's like an angel fell into my life. One who doesn't function by societal standards. I'm not taking away from the pain and hardship that this diagnosis brings to families. All of a sudden, there's a child with a lot of needs and you spend a lot of time trying to connect on their level. It's not easy — but it's necessary to let them know they are seen.

[…]Dakota's autism forces me to see the world from a completely different place. She's a gift from another dimension. The things she knows — about sea anemones and tide pools. I got to 60 not knowing about the Mariana Trench. Now I know all about it! Her ability to absorb information is unparalleled. I can imagine her winning on Jeopardy! someday. She teaches me. To be able to see the world as she does — for me, it's been a wonderfully magical experience. I'm so glad we have each other.

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

I have often said that having a disabled child feels like “falling through the looking glass” into a bizarro world where up is down and down is up.

One of the many odds things that happen in Special Needs World is you get told not to save for your child’s future: not to set up any bank accounts in their name and not even to open a college savings account.

Why?

Because, in America, government benefits are often tied to being very, extremely poor… or at least appearing so on paper. The Social Security Administration’s benefits for disabled children are very difficult to get and have an asset limit of just $2,000 per individual ($3,000 for a couple). If you have just $1 more than that in your bank accounts, your child cannot qualify for Supplemental Security Income (SSI).

Unless, of course, you put the money in a special box.

The way for parents of disabled children to put money in a special box is to get an ABLE account. This stands for Achieving a Better Life Experience and they are known under the tax code as 529(a) accounts — yep, kinda like college savings plans.

But what are ABLE accounts and why should a parent get one?

I have to admit, I was confused for a long time. Even after talking to a finance professional, even after I got one for my son, I still wasn’t clear on the benefits. I just sort of trusted them that this was the right thing to do.

That all changed recently when I caught up with an old friend. Formerly of the Statesman Journal, Kaellen Hessel-Owens now works in communications for the Oregon State Treasury, home of one of the first ABLE programs in the nation. Just like me before I had my kids, Hessel-Owens initially wasn’t aware of how bizarre the American disability benefits system is.

“I had no idea about the problems with asset limits until I started working at Treasury and the injustice of it all struck me,” she said. “I was like: ‘You’re making people do what?’ It was unbelievable.”

So when an opportunity came up to work under Oregon’s ABLE program, Hessel-Owens jumped at the chance. As of June 30, there are more than $53 million in assets under 5,487 such accounts in the state. The state pulls in about $30,000 a month in fees for those accounts, which goes towards the program’s administration, including the contract with Sumday, who manages the accounts. (Nationwide, there is more than $1 billion in ABLE accounts from 100,000 holders, according to the National Disability Institute.)

The vast majority of Oregon’s accounts are owned by adults; just 14 percent of the state’s account holders are under 19. Hessel-Owens wants to change that.

“There’s so many different ways that I think it could benefit families,” she said.

Read more: What you need to know about Social Security's benefits for disabled children

So: if you are a parent to a disabled child why would you want one? After all, the tax advantages are only on the interest. It’s not like a Health Spending Account, where you can put in pre-tax dollars. If you need special equipment TODAY for your kid, why would you put that money in that account?

First of all, if $16,000 a year is the difference between your child qualifying for Supplemental Security Income or not, this is a great way to shelter those assets. SSI is up to $794 per month.

Secondly, if you want to have any sort of savings for their future — what you might put away for a college education or down payment on an accessible house — an ABLE account is one of the only ways to save in their name in a way that preserves their ability to qualify for SSI and Medicaid after they become an adult. Otherwise, your child will have to pay out the nose until they are poor enough to qualify.

Third, ABLE accounts have a special pre-paid debit card that attaches to the account to help teach independent financial management. That means that as a parent you can authorize your teen or adult dependent a certain amount of money per week. You can even narrow down the limits to only spending certain amounts at certain places, such as $50 at GameStop instead of $1,000 like my kids would….

“We all have issues with impulse control,” Hessel-Owens said. “For some people with disabilities that is an even stronger barrier to using their money. This can help them stay on track with the goals they’re setting for themselves.”

And finally, you might live in a state like Oregon which gives a tax credit to people who put money towards the account. That’s right: free money! This applies to any Oregon resident, so grandma or neighbor or auntie can deposit money into your child’s account and get back up to $300 of it. (There are income tiers so check this chart.)

Once you have an account, what can you spend it on? The Internal Revenue Service has taken a pretty hands off approach on this one. The money should be spent on “qualified disability expenses,” but there’s no exclusion list, according to Hessel-Owens.

“It’s incredibly broad. You could fit most thing under that list,” Hessel-Owens says. Stuff like housing, education, transportation, job training, personal services and medical costs — all of that counts.

Read more: Special Needs World: The web of bureaucracy that ensnares parents of disabled children

What else do you need to know about ABLE accounts?

*       The accounts are limited to people diagnosed with a disability before turning 26. (Some U.S. Senators want to change that to 46.)

* Every state but Idaho, the Dakotas and Wisconsin offer them. Most, like Oregon’s, accept account holders from any state. (Oregon’s national program is called ABLE for All.)

*       You can only have one account per person. That’s a nationwide restriction.

*       Each state’s program offers different fees, terms and investment vehicles. Check this site to compare: https://www.ablenrc.org/select-a-state-program/

*       ABLE account annual contribution limits are tied to the gift tax exclusion. So this year’s limit is $16,000 — the same amount someone can gift without incurring a tax penalty.

*       The max you can have in an account is $100,000 before it starts to affect SSI eligibility.

*       Contributions are halted when the account balance is more than $400,000.

*       If your child is old enough or able enough to work, they can additionally save money in what’s called an ABLE to Work contribution. That amount is tied to the federal poverty limit, currently $12,880.

*       To set up an account, all you typically need is about 15 minutes, a tax ID number and a bank account where funding is coming from.

Sounds pretty good right?  But there is a downside. If you choose one of the investment options, there is risk involved. Choosing the aggressive plan is recommended if your children are young, and with the stock market in a downturn, now could be a good time to buy.

I started my son’s account when Oregon started allowing paid parent caregivers in 2021. If you’ve paid attention to the stock market, you’ll notice that that was not ideal timing to make an aggressive investment and we have actually lost money.

But, I consider investing as “betting on rich people” and I swear that, somehow, they always win in the end. We regular folks might as well take advantage of their strategies like tax shelters and investments.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From the Wall Street Journal: “Caring for Family Doesn’t Have to Be Unpaid Work”

An estimated 48 million Americans provide care without pay to an adult family member or friend, according to Caregiving in the U.S. 2020, a report by AARP and the National Alliance for Caregiving.

Many of these family caregivers assumed the role during the pandemic, as private caregivers left what is a demanding and low-paying profession. Often, these caregivers—the majority of whom are women—have to leave their own job, creating a financial strain on their households. 

Interest in providing financial support for family caregivers, including compensation, is growing due to the workforce crisis, long Covid and the growing gap between the number of people needing care and those available to provide it, says Lance Robertson, a director in healthcare for the consulting firm Guidehouse, and former U.S. assistant secretary for aging. “Family members are right there. They’re equipped and capable. If we lose them, it will worsen the workforce crisis,” he says. 

Many family caregivers are eligible for hourly wages, most often through state Medicaid plans, but don’t know it exists or how to navigate the often complicated process. Coverage, eligibility and benefits vary by state and sometimes by county. Some states require family members to take training courses. Others won’t pay a spouse or legal guardian or a family member, who lives in the same house. Hourly pay is often based on the average local wage for a home care aide. The median hourly wage for home health and personal care aides is about $14 an hour.  

• From former presidential candidate and current U.S. Transportation Secretary Pete Buttigieg (via Medium): “One year in, parenting has taught us about vulnerability and gratitude”

Most parents don’t start off expecting to be among the ones who know their way around a children’s hospital. But suddenly it’s you. Soon the hospital was our new home base, and in different combinations, through days and sleepless nights, the two of us cycled between Gus’ bedside in the ICU room, the cafeteria with its six-cheese lasagna special, and the nearby hotel with Penelope’s bassinet, endlessly grateful to the friends and family who helped us cover down.

Parenting is lots of things, and one of those things is terror. You watch your infant, sedated and surrounded by wires and tubes and monitors and medical personnel coming and going constantly, and wonder how we could live in a universe where a few weeks could be all that a child gets on this earth. (In one dark moment, I wondered if my weeks of parental leave would amount to the entirety of my time with our son, this beautiful infant whose face I had seen for the first time just weeks earlier and whose life had now come to matter to me as much as my own.) I prayed. I looked for meaning in tiny fluctuations in the vital signs on the monitors. I thought of my father, whose last days played out on a ventilator in an ICU room like this as he lost his battle with lcancer, though Chasten repeatedly reminded me that this was a completely different situation. We tried not to hassle the medical staff with our million questions which were really just one question. And they patiently repeated the one honest answer, which was that with this kind of virus, the only way you know it’s getting better is when it’s stopped getting worse.

• From TODAY.com (opinion): “My son will need 24/7 care for the rest of his life. So, I bought him a farm”

(Note: Jessica Ronne was the subject of a documentary Medical Motherhood featured in April called Unseen: How We’re Failing Parent Caregivers and Why It Matters.)

As time progressed, we moved away from rural Tennessee in search of more resources and support, which led us back to my hometown in Michigan, where Lucas recently celebrated his 18th birthday. This is when everything changed again. Now that Lucas was officially an adult, we realized how few long-term assisted living facilities were available for profoundly disabled individuals who would require 24/7 care for the rest of their lives. This is not just our reality; thousands are on waiting lists for assisted living.

Adults with intellectual and developmental disabilities often are placed in long-term housing when their parents die or become terminally ill. Imagine the trauma of losing a beloved caregiver and then being forced to leave the only home you’ve ever known. Imagine how confusing it would be to be transported hours away to a facility that may be poorly regulated and may offer limited care. It’s not an ideal scenario — so, we expanded our mission statement at The Lucas Project once again. We decided that, in addition to providing respite and recognition, we also would offer residential support to special needs families.

My husband and I recently closed on our first property due to the generosity of an anonymous investor who offered to front the money for a short-term loan. We’ve affectionately named the property Hope Farm, and it will provide housing and long-term care for six disabled adults — hopefully by next summer if we can maneuver through the bureaucratic red tape, which can be overwhelming with Medicaid dollars involved! We also hope to turn the big white barn on the property into a respite center. Our desire is to offer weekend and after-school care to the special needs community in West Michigan. It’s a beautiful property full of potential, but it needs a lot of work! But — it won’t be the hardest thing we’ve ever accomplished, and we have faith in the generosity of humanity to help us through.

Medical Motherhood brings you quality news and information for raising disabled and neurodivergent children. Get it delivered to your inbox each Sunday morning or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, or Instagram. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

How many times has this happened to you?? Personally, I’ve gotten a little gun shy about adaptive equipment and now demand to try it out before we go through the effort!

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Psychology Today: “The Damage Caused by Infantilizing the Disabled”

[Dr. Kenneth L. Robey, author of, Implicit Infantilizing Attitudes About Disability, says there are four reasons why parents or caregivers might infantilize disabled people:]

* Implicit associations. We all carry unconscious, implicit associations or attitudes that impact our interactions with others. This implicit “infantilizing” influences the behaviors not only of people who have little exposure to those with disabilities, but the behaviors of parents and caregivers with considerable exposure to people with disabilities.

* Parental caring and protectiveness. As parents, we seek to protect our children, including our adult children, from harm and young people who do have disabilities might be particular targets of this desire to protect. Our protective instincts are strongest when responsible for caring for those who have either real or imagined fragility.

* Guilt. Parents of children with disabilities often experience uncertainty, whether rational or irrational, of whether their child’s disability is related to their own actions or inactions. An enhanced sense of protectiveness might be a compensation for that sense of guilt.

* Cultural norms. There are dramatic cultural differences in how disability is viewed and addressed, ranging from cultures where disability is believed to be a punishment for the sins of family members or ancestors, to cultures where disability has very little stigma or expectation of functional limitation. Cultural background can be a strong influence on how parents and caregivers transition from a relationship of dependence to one of interdependence.

• From Mother Jones: “Inside the Kafkaesque Process for Determining Who Gets Federal Disability Benefits”

A disability appeal hearing can seem surreal to an outsider. Unlike a court proceeding, it involves little storytelling or persuasion. And it’s only glancingly related to a claimant’s experience of impairment. “Disabled is a legal term, not really a medical term,” says Amy Vercillo, a vocational counselor and long-time SSA vocational expert. The government’s definition of a disability requiring compensation is agonizingly specific, focusing on the minutiae of how an impairment changes a person’s capacity to, say, reach forward, bend over, or lift 10 pounds. ALJs [Administrative Law Judges] are tasked only with determining whether the claimant fits that definition. The objective fairness of the outcome depends entirely on how well the judge, vocational expert, and claimant’s representative—if they have one; it needn’t be a lawyer—can describe the claimant’s disability in bureaucratic doublespeak.

[…]Reversing a denial of benefits can take years, even for an experienced lawyer. A 2014 study found that more than 60 percent of claimants denied at the hearing level were eventually awarded benefits. That’s partly because people’s disabilities often get worse over time, but also because the government is so hard to convince—that skepticism is predicated on assuring that taxpayer money goes where it’s deserved, with the expectation that well-intentioned experts, fluent in the language of bureaucracy, will make the decision. When that ideal breaks down, people like [Pennsylvania resident Albert] Diaz end up lost in an interminable nightmare of what looks an awful lot like bureaucratic evasion and nonsense.

• From the Ghanaian Times: “Let’s empower mothers with disabled children”

There is the need for the empowerment of mothers with disabled children while discouraging stigmatisation against such women, to reduce instances of depression and poverty among them.

“Caring for children or individuals with severe disabilities, especially in our part of the world comes with many problems, as some people believe that Persons With Disabilities (PWDs) are cursed and therefore associating with them or their families meant exposing oneself to bad omen, which is false.”

The founder of Women With Vision (WWV), a women and child centred not for profit organisation [sic], Ms Sylvia Appiah made the assertion in an interview with the Ghanaian Times in Accra yesterday.   

According to her, many mothers with disabled children suffered depression due to the emotional trauma they suffered in the hands of their superstitious neighbours whose cold attitudes towards them are fueled by certain traditional [beliefs].

Explaining, she indicated that the stigmatisation against childhood related disability was often associated with women’s role in child bearing and upbringing, adding that poverty also played a role in promoting discrimination against mothers with such children.

Medical Motherhood is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

It’s out! This summer, for Oregon Business magazine, I talked to child care and business experts around my home state about Oregon’s new $100 million investment in child care and how even more needs to be done on child care for a healthy economy.

The story is focused on Oregon’s particular problems and solutions, but the issues are nearly universal in this country. The care economy has a significant impact on the traditional economy for a very simple reason: Time is finite. When people need to care for other people, that time can’t be spent doing other things, like working.

I think society tends to ignore these issues or see them as a secondary concern to hotter topics like taxes, debt relief and economic stimulus programs, but lack of care options has a major effect on economic growth. For the Oregon Business story, I spoke to an economist in the state office, Josh Lehner, about it. He said not only could this be affecting how many people have to leave their careers just as they get started, but it could be affecting the number of people born and living in Oregon.

Without more attention being paid to these sorts of family issues, Lehner says he sees big consequences to the state.

“If you can’t find a house or apartment that meets your needs, and you can’t find child care that meets your needs, you’re just not going to live there,” Lehner says.

Oregon did have a pretty major investment during the last legislative session in child care, thanks to federal stimulus dollars. The $100 million is going to help fund construction costs of new or improved child care centers, Employment Related Day Care subsidies to parents, Preschool Promise grants, and a new state agency dedicated to early childhood education and child care.

Officials estimate the new programs will create 6,000 new child care spots. But it still won’t be enough.

“We were a child care desert before the pandemic,” [Oregon Early Learning system director Alyssa] Chatterjee says. “We’re anticipating seeing things have gotten worse before they get better.”

The agency head says early learning and child care have been treated as a private good that families are on their own to secure — unlike K-12 education — and that’s bad for the economy.

“This is a sector that’s really built off of the backs of families,” Chatterjee says, noting that with demand far outpacing supply, “the only way to [grow] is to charge families more.”

And why is that? For as long as humans have existed, human children have existed and so have elderly and disabled people. Those care needs did not just suddenly appear. For Oregon Business, I also explored the historical factors at play and challenged mainstream assumptions about who should care about care.

So if this is such a huge deal — affecting the future of humanity, the statewide economy and every corner of the state — how did care get to be so undervalued in the first place?

Courtney Helstein, senior political director of the advocacy group Family Forward, says it’s simple: racism and sexism.

“It’s because, since the beginning of this country and long before then, it’s because women — and particularly women of color — have been trapped into these roles,” Helstein says.

Family Forward’s goal, Helstein says, is to “bring about this systems change and to really kind of shift the narrative that, actually, caregiving is extremely valuable, whether paid or unpaid.”

Read the full version of my story on the child care crisis in the September 2022 magazine or online at: https://oregonbusiness.com/article/education/item/19638-a-crisis-of-care.

Make sure to read to the end as the sidebar talks about a big change coming to day care programs in Oregon for disabled children by 2026.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Variety: “Netflix Partners With RespectAbility on New Program for Disabled Children’s Content Writers and Animators”

RespectAbility has teamed up with Netflix to create a new Children’s Lab for disabled TV creators, which will provide education and training for disabled writers, animators, and creative executives looking to focus on preschool and children’s content.

The training program, funded by Netflix’s Fund for Creative Equity, will include a five-week course featuring programming by New York-based production partners 9 Story Media Group and Silvergate Media. As part of the lab, participants will each be assigned a mentor as they join in-person and virtual workshops, trainings, panel conversations, networking events, and a talent showcase with table reads of each writer’s project performed by disabled actors. The Children’s Content Lab will also provide a week of career development training with industry experts.

• From the New York Times: “This Teen Was Prescribed 10 Psychiatric Drugs. She’s Not Alone.”

“You can very cogently argue that we don’t have evidence about what it means to be on multiple psychotropic medications,” said Lisa Cosgrove, a clinical psychologist at the University of Massachusetts, Boston. “This is a generation of guinea pigs.”

A study published in 2020 in the journal Pediatrics found that 40.7 percent of people ages 2 to 24 who were prescribed a drug for attention deficit hyperactivity disorder were also prescribed at least one other medication for depression, anxiety, or another mood or behavioral disorder. The study found more than 50 different psychotropic medicines prescribed in such combinations, and a review by The New York Times found that roughly half of the drugs were not approved for use in adolescents, although doctors have discretion to prescribe as they see fit.

• From Dallas Morning News: “Inspired by ailing daughter, family makes accessible clothes for kids with disabilities”

Charlotte’s parents are making her final months meaningful. But they have already cemented her legacy: They have started a clothing company called The Charlotte Letter that makes adaptive clothing, providing dignity and accessibility for children with disabilities.

[…]The Charlotte Letter Clothing Company started as a Facebook group in November 2019, where the Brookses would post updates about Charlotte’s health for their family and friends. The name is a play on The Scarlet Letter. In the way the scarlet “A” is the first thing someone notices, so is a physical disability, Stephanie said.

The Charlotte Letter sells clothes and accessories geared toward kids ages 4 and older. Infant and toddler clothing is primarily still accessible — designers expect children that young to still be wearing diapers, Stephanie said.

The company sells rompers with access for a feeding tube that is typically inserted into a patient’s stomach. The rompers also feature zippers for quick access to diapers, and dropped waistlines that don’t catch onto feeding tubes.

All of their clothing is designed with fun patterns and colors so the children wearing them can feel confident about what they have on, Kameron said.

Medical Motherhood is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.

Medical Motherhood brings you quality news and information for raising disabled and neurodivergent children. Get it delivered to your inbox each Sunday morning or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood T-shirt store.

Do you have a story to share or an injustice that needs investigation? Tell me about it and it may become a future issue.

TW: This issue refers to youth suicide. Call 9-8-8 for immediate assistance in a crisis.

When journalist Abigail Kramer first started talking to families and mental health professionals in New York, it took a long time to figure out what the story was. The youth mental health crisis was clear — but complex and overwhelming. Kramer said she found “a near-universal sense of outrage” from her sources and quickly determined that everyone was angry with the state government.

Even so: “It took me a long time to land on a cohesive story for reporting,” she said during a webinar I attended this week from the USC Annenberg Center for Health Journalism.

Kramer’s reporting would eventually focus on data sets showing that a plan to move pediatric mental health patients to community-based settings only succeeded in eliminating beds in hospitals and institutions. Their replacements never materialized. That left desperate families in crisis with nowhere to turn. The series was published this year in partnership with ProPublica and has already spurred New York Attorney General Letitia James to investigate what appear to be violations in the right to services.  

Unfortunately, the lack of adequate pediatric mental health resources is not a problem unique to New York state. The youth mental health crisis is nationwide and particularly acute in my home state of Oregon, which ranks last or one of the worst in several indicators of youth mental health tracked by nonprofit Mental Health America. (See their 2022 report.)

Read more: Mama, it's not you. Oregon's youth mental health services really are in free-fall

The worst can happen. Youth suicide is real. Children — even young children — really do kill themselves. In fact, the Centers for Disease Control and Prevention says suicide is the second-leading cause of death among children ages 10 to 14.

Another of the panelists, New York University professor Dr. Michael Lindsey, said that in 2019, there were 3,703 suicide attempts per day among high school students. The period from 2019 to 2020 saw a 31 percent increase in youth showing up at emergency rooms with some sort of self-harm behavior or other mental health crisis.

But there are reasons to hope, resources and solutions.

Meadows Mental Health Policy Institute Executive Vice President Dr. Julie Kaplow is part of the team that is helping to rebuild after the May 24 mass shooting at an elementary school in Uvalde, Texas. She spoke about the program her team is using to help the community process through trauma.

“What we know is that society’s most significant problems — including … domestic violence, community violence, mass shootings — stem from unresolved childhood trauma,” Kaplow said, noting that the police visited the Uvalde shooter’s house eight times before the tragedy. “The more we can intervene early … the more we can prevent these kinds of tragedies going forward.”

In addition to the evidence-based and modular Trauma and Grief Component Therapy*, she explained how the Handle With Care program was improving communication and awareness between law enforcement and schools. The idea is simple: when a child is present at a traumatic scene, law enforcement or child protective services acts with compassion and then notifies the school so that they, too, can watch for worrisome behavior.

With an estimated 250,000 children losing a caregiver to COVID-19 in the last two years, Kaplow says there needs to be a particular focus on healthy bereavement and grief. The death of a loved one is not only the most common form of trauma, it is also the most strongly associated with poor academic outcomes, she said.

Read more: How to smile again: Grief and motherhood

So what is trauma?

Kaplow defines it as “the experience of real or perceived threat to life or bodily integrity.” That perception can be key, especially during emotional teen years when so much is riding on social interactions.

Lindsey, from the NYU Silver School of Social Work, explained his research finding that 15-17 year-olds were more likely than others to have their suicide deaths associated with a “relationship challenge.”

Suicide has increased dramatically in recent years among Black youth. Lindsey’s research found a 144 percent increase in the number of Black youth committing suicide in 1991 versus 2019, a period during which white youth suicide rates decreased slightly.

“This led us to try to figure out why there might be an increase particularly among Black youth,” Lindsey said. He listed cultural barriers like messages to “man up” or “handle problems within the family.” But he also said distrust of service providers may be warranted.

When traumatized kids act out, “school personnel are not asking kids about what is underlying that anger,” Lindsey said. “The tendency is to suspend those kids or expel them from school.”

Anger is often preceded by feeling a lack of control. It wouldn’t surprise me if children from social minorities felt that way more often, because they, in fact, have less control.

I certainly felt anger when Lindsey pointed out his next statistic: that behavior infractions at school correlate to the time of the month when money runs out and food or other resources are more scarce. Children getting punished for being hungry.

Lindsey believes that more social-emotional curriculum throughout K12 schools, as well as enough mental health counselors for students, would stem the tide.

Kaplow agrees that talking through trauma is the best way to process it.

“We somehow have adults concerned that if they bring it up they will upset the child more,” she said. “But what we find is that the more we can talk about it openly — the more we can directly address it head on — the better the outcome for the child.”

As for how to change the system for good, The City reporter Kramer said she soon learned where to look for the people who could explain the issues the best.

“I found that parents who had sort of become advocates for their own kids and then become helpers to other families were: A. absolutely the best people to help me understand how the system works and how you actually navigate it and B. … that, once I earned that trust, people were very willing to make connections and were incredibly generous with their time, and their experiences, in talking to me.”

If you are raising one of the 2/3 of young people who have experienced something traumatic in their lives, please check out these resources for caregivers: https://mmhpi.org/work/trauma-grief-center/virtual-learning-library/

*When you purchase via links on my site, I may earn a commission.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From The Statesman Journal: “Parents paid as caregivers for kids with disabilities may lose funds”

Hunter Tennison-Hayes, 10, was diagnosed with autism when he was 3. He also has a form of epilepsy.

His parents, Kellie Hayes and Michael Tennison, struggled to balance caring for Hunter with work and finishing college. They said it was impossible to find caregivers — even after qualifying for a state program that paid for them. They relied on help from friends and roommates before Kellie dropped out of school to focus on caring for Hunter full-time herself.

Then, during the COVID-19 pandemic, the state created an emergency rule to allow some parents to get state funding to care for their own children. Kellie was able to enroll and now receives income to care for Hunter.

But they could soon lose that money.

The emergency rule is set to end as soon as the federal government declares an end to the COVID-19 public health emergency. Hayes and other parents of disabled children are working to make the change permanent, but it's become a race against time.

They're also facing opposition from groups that are usually their biggest supporters. Some disability rights groups argue that the rule was meant to be temporary and that parents should stick to being parents.

The Oregon K Plan, a Medicaid plan adopted by the state, provides federal and state funding forprimary care to people with intellectual and developmental disabilities. People receiving services under the K-Plan go through a functional needs assessment to determine the disability support services they are eligible for.

Full disclosure: I’m friends with Kellie Hayes and we work on this campaign together. For Medical Motherhood coverage on this issue, please see this list.

• From Oregon Capital Chronicle via The Lund Report: “OSU Study Calls For Better Screening Of Sexual Abuse In Children”

A recent study by researchers at Oregon State University found that chronic childhood sexual abuse is more likely to lead to negative outcomes in adults than single instances of trauma.

The findings highlight the importance of screening for chronic trauma, rather than relying on one-time checklist-style assessments, which, for instance, ask how severe was the abuse or who was the abuser to the victim.

Popular assessment tools like the Adverse Childhood Experiences, which consists of a series of questions, could be greatly improved with a few basic follow-up questions about the duration of abuse, according to the study’s lead author, Ashley Schuyler.

“(Adverse Childhood Experiences) is useful, but maybe not the most helpful in identifying the individuals who need the most help.” Schuyler told the Capital Chronicle.

Along with physical and mental health challenges, adults who experienced chronic abuse as children suffer from higher rates of drug abuse, poverty and incarceration. Longer durations of childhood trauma are also linked to higher rates of emotional and physical health problems, sexual dissatisfaction and dysfunction, relationship and marital problems, fair or poor overall health, lower educational attainment, income below the poverty level and a history of incarceration.

• From Stanford University: “The BUDI system: Stanford medical student Blynn Shideler designed a wearable device to make daily physical therapy more accessible for kids with cerebral palsy.”

Medical student Blynn Shideler arrived at Stanford with an award-winning health device – and every intention of improving it.

The device addresses a need in the cerebral palsy community. Often, kids with cerebral palsy – a group of disorders that affect movement, balance, and posture – need daily sessions with a physical therapist to build strength and improve motor skills. As an undergraduate studying bioengineering at Columbia University, Shideler thought there must be a better way.

He collaborated with other students to design a device that would make it easier for these kids to perform their therapy exercises at home, or anywhere. The result was BUDI – the Biofeedback Upper-limb Device for Impairment – a bulky bracelet built with sensors that tracked motion and provided feedback on how the user might want to adjust how they are moving.

[…]“I learned about building an iOS app and what you can do with the available sensors on Apple watches and iPhones,” he said. “It really started to click; maybe BUDI could be designed as software on a commercially-available smartwatch rather than building bracelets and shipping them to people.”

If BUDI were available in the app store, Shideler thought, kids anywhere could have physical therapy on demand on their wrists. It would give them some autonomy, help alleviate problems created by a shortage in physical therapists, and reduce the strain on families who currently take their kids to therapy every day.

Medical Motherhood is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.

Medical Motherhood is a weekly newsletter giving those raising disabled children the news and information they need to navigate complex systems. Get it delivered to your inbox each Sunday morning or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Spotify, Apple Podcasts, or Instagram or, visit the Medical Motherhood merchandise store to get a T-shirt or mug proclaiming your status as a “medical mama” or “medical papa.”

Do you have a question about raising disabled kids that no one seems to be able to answer? Ask me and it may become a future issue.

Back to school is usually an exciting time of year.

This year, it’s hard to ignore the headlines:

* teachers leaving in droves;

* districts slashing instruction days;

* special education students relegated to the “virtual basement.”

There seems to be an increasingly vocal assessment that public school is struggling to fulfill its basic promises.

Michael B. Horn, author of the book From Reopen to Reinvent: (Re)Creating School for Every Child, says that the pandemic experience has caused a lot of families to question their assumptions about school.

“There’s obviously a whole conversation about what parents are trying to prioritize and how they’ve been so acclimated to seeing school as a status game or judgment on their parenting,” Horn told The Hechinger Report, likening modern schooling to a zero-sum game. Instead, he recommends a positive-sum system — one where everyone wins. “[A positive-sum system] tries to say, we can be part of this societal shift toward a healthier culture that isn’t judging parents or their kids, but is instead supporting both.”

Many parents of disabled children have already had this experience with public school. Due to their child’s differences, they long ago realized the folly of the school-status rat race. Their children’s accomplishments matter because they do — not because they are measured against a statistical norm.

These days, more and more American children are qualifying for special education services, which means more and more parents are probably learning this same lesson.

In 2019, the most recent year data were available, 6.47 million American students ages 6 to 21 qualified for special education. That is 9.7 percent of the total population of children, an increase from the previous year of 0.2 percentage points. The younger the student, the more likely they are to qualify for the individualized help. A little more than one in eight children in elementary school, or 12.7 percent, are now being served by our nation’s special education law — the Individuals with Disabilities Education Act (IDEA).

It remains my fervent hope that the pandemic will serve as chance to reinvent public school. I wrote last spring about when I finally gave up on the traditional brick-and-mortar system in favor of an online public charter, and it’s been a great option for my kids.

I’m not saying this type of schooling would work perfectly for everyone, but thinking outside of the box can be very helpful to some learners. This seems to also be the sort of flexible thinking that experts like Horn are advising:

“You have to get out of this one-size-fits-all mindset that all kids do better in brick-and-mortar learning,” he said, “that all kids do better with the exact same classroom experience or all kids need the exact same lesson on the exact same day — to a system that really recognizes students and parents have different circumstances, different situations and they need different models of schooling. School districts really need to meet parents where they are with more of a portfolio mindset as opposed to a one-size-fits-all mindset.”

There’s a reason the governing document for special education services is called an Individualized Education Program — your child’s uniqueness is supposed to guide the process.

The IEP can be long, complicated and overly obsessed with a child’s deficits, however. So some families have found a short one-pager about their student can help introduce new school staff to their personality, preferences and needs in a human-centered way. Regardless of whether you are preparing little backpacks for a trip on a school bus or charging up those Chromebooks for another year of online learning, a one-pager can be a helpful start to the school year.

Don’t have time? Don’t worry! I made you one. Just click this link, yep this one right here, to make a copy of a Google doc that you can customize in about 15 minutes. (If you have an iPhone, you may need to download the Google docs app to edit it or click on it from a desktop computer.)

Option 2: If you’re old school or just don’t have the right tech, you can click this blank PDF to simply print and fill it out with a pen.

This one-pager about your child can be a useful way to begin the school year. Send it digitally, or print it out and bring it to IEP meetings or that first day of school. With the course set for person-centered communication, navigation should be smoother the whole year long.

Click here to create an editable copy of this one-pager template in Google docs. On an iPhone? You may need to download the Google Docs app or access on a desktop device to edit. Don’t wanna bother? Print and fill out this blank PDF instead.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From the Associated Press via OregonLive: “‘Wrongful life’ damages OK, court says, when woman gave birth to disabled girl after clinic messed up contraceptive shot”

The Washington Supreme Court says that under state law, it’s OK for judges to award extraordinary damages in so-called “wrongful life” cases where a child has birth defects or disabilities that require extensive care.

The unanimous decision Thursday came in the case of a woman who became pregnant in 2011 after a federally funded health clinic mistakenly gave her a shot of flu vaccine instead of the contraceptive Depo-Provera. Her child was born with a condition that causes cognitive delays, slowed speech and language skills, epilepsy and vision problems.

Following a trial in 2020, U.S. District Judge Robert Lasnik awarded the child, Sandra, and her parents, Yesenia Pacheco and Luis Lemus, $10 million — $7.5 million for her medical, educational and other expenses, and $2.5 million in damages for her parents.

The federal government was ordered to pay the damages because the Neighborcare clinic is federal funded and serves low-income patients.

• From the Autistic Self-Advocacy Network (opinion): “All Kids Deserve Inclusive Classrooms”

In an interview with MSNBC, a representative for the group Moms for Liberty appeared to imply that LGBTQ+ children should be educated in separate classrooms from other children. The representative stated that “children with autism, Down Syndrome, they… have to be put into separate classrooms” and that similarly, “for children that identify differently, there should also be a specialized… something.” These disturbing comments are an attack on LGBTQ+ students, and they also inaccurately portray segregated classrooms as necessary for disabled students. All children deserve access to education alongside their peers, in safe and inclusive classrooms. ASAN stands against Moms for Liberty’s offensive comment and the hatred and exclusion that gave rise to it.

[…]This remark demonstrates something many disabled advocates have long known: that the groups opposed to LGBTQ+ students being safe and welcome in K-12 education also support the exclusion of disabled students. Some disabled students are LGBTQ+, and even those who are straight and cisgender are harmed by the kind of rigid intolerance espoused by groups like Moms for Liberty. Such organizations are fundamentally hostile to the inclusion, belonging, and thriving of disabled people, including children in schools. ASAN opposes any efforts to place children in separate classrooms or schools on the basis of identity or deprive any child of the full benefit of inclusive K-12 education. ASAN will continue to advocate unrelentingly for inclusive education for all students.

• From Disability Support Guide (Australia): “Disney responds to disability advocate on creating a princess with disability”

[Hannah Diviney], who lives with cerebral palsy, has campaigned for a Disney princess with a disability to be created for the past few years, after missing out on seeing anyone like herself in entertainment media while she was growing up.

While the film company didn’t respond to Hannah directly, they did provide a statement to the Australian Women's Weekly magazine, after they recognised Hannah’s efforts to convince pop singers, Lizzo and Beyonce, to change ableist lyrics in their songs.

"We love Hannah's passion and hear her important voice on why inclusive and representative storytelling matters," a Disney spokesperson told Australian Women's Weekly.

"As storytellers at Disney, we're committed to reflecting the incredibly rich diversity of the human experience and in ways that inspire, open minds and hearts and bring people closer together in a world where we all belong."

[…]Ms Diviney created a petition about the idea, ‘Create a Disney Princess with Disabilities’, which received encouragement from the community.

Over 60,000 signatures have since been accumulated on the petition, with many people reaching out to Ms Diviney to tell her about the difference that seeing themselves or their loved ones reflected in a Disney film would make.

Medical Motherhood is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.

Medical Motherhood is a weekly newsletter giving those raising disabled children the news and information they need to navigate complex systems. Get it delivered to your inbox each Sunday morning or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Spotify, Apple Podcasts, or Instagram or, visit the Medical Motherhood merchandise store to get a T-shirt or mug proclaiming your status as a “medical mama” or “medical papa.”

Do you have a question about raising disabled kids that no one seems to be able to answer? Ask me and it may become a future issue.

Read the full transcript at MedicalMotherhood.com

Personally, I think I’m a cat. Fierce, independent but also more than willing to run and hide! What animal do you feel most represents you*? Let us know in the comments.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From The Hill (opinion): “Simple fixes by Congress could help 250,000 homeless children with disabilities”

While the referral requirements for services are helpful, they contain a loophole that Congress can fix with a simple tweak to the McKinney-Vento Act. Specifically, Congress needs to also require referrals for income-support to the Social Security Administration (SSA) in cases in which the homeless child or youth has a disability.

[…]Congress has recently taken note of the startling decline in SSI applications and awards for children and youth. Sen. Ron Wyden (D-Ore.), chair of the influential Senate Finance Committee, raised concerns about SSI recently in a letter to Acting Social Security Commissioner Kilolo Kijakazi. The Senator noted that the “number of SSI youth applications fell by 45 percent and the number of awards fell by 37 percent” over a recent 10-year period. 

Sen. Wyden also pointed out to Acting Commissioner Kijakazi that SSI outreach is required by law and that current outreach efforts by SSA to some populations, such as the homeless, do not have a focus on children or youth. A tweak to McKinney-Vento would directly address both of the issues raised by Sen. Wyden.

• From Metro.co.uk: “The invisible children: how 50% of disabled kids still can’t access playgrounds”

For most children, a trip to the playground brings a world of wonder.

A spin on a roundabout can be transformed into a hurtling rocket trip to space, while the exhilaration of our feet simply touching the sky as a swing flies high, is often a feeling that stays with us well into adulthood.

However, troubling research carried out earlier this year reveals that simple outdoor playtime is still not an option for every family.

Findings carried out by disability charity Scope, as part of their Let’s Play Fair campaign, discovered that children with disabilities are being shut out from fun and friendship at their local playgrounds because the spaces have not been adapted to cater for them in any way. 

In fact, 49% of all families with disabled children surveyed reported facing accessibility problems with their local playground – leaving nearly half of one million disabled children in the UK feeling invisible.  

‘Play is essential to a child’s cognitive development,’ explains Dan O’Hare, educational psychologist at the University of Bristol. ‘It allows children to use and develop skills in areas such as attention, regulation, social and motor skills.

‘It’s really concerning when groups don’t have access, or reduced access to outdoor play facilities – and this is where community support is vital.’

• From Georgia Public Broadcasting: “The ADA was a victory for the disabled community, but we need more. My life shows why”

Navigating society is still difficult for me as a disabled person. Following my experience at the D.C. bar, its manager of diversity, equity and inclusion reached out to me to discuss what happened and to apologize.

In our meeting, he laid out action items he planned to take to ensure that such an occurrence doesn't happen to disabled patrons in the future, which included revisiting bar policies and making sure they're enforced with retraining for all staff.

While I appreciated the apology and dedication to do better, I remember feeling very indifferent to the bar's response, and having a, "I'll believe it when I see it" mindset to their statement of dedication to accessibility.

The incident at the bar still happened and it's largely because accessibility and inclusivity for disabled people are often treated as an afterthought. In my experience, attempts to do better were only initiated after such incidents occur and disabled people made noise about.

The burden shouldn't fall on us to constantly fight against violations of our civil rights. In an ideal world, the ADA would be enforced more, and owners of bars and restaurants would prioritize access to all. I wish I was able to access every place in society with ease. But that isn't the reality for myself and so many others.

I'm immensely grateful to be a part of the ADA generation, and will never take for granted how hard disability activists fought for the civil rights protections that I benefit from every day. But at the same time, I want more for myself and my community, whether it be through expanding or modernizing existing laws, or bringing forward new policies to advance our rights and access.

The ADA deserves to be celebrated. But it can't be seen as the final destination for disability rights. We deserve more.

Medical Motherhood is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.

*Edited to remove a term that a good friend said was degrading.

Medical Motherhood is a weekly newsletter giving those raising disabled children the news and information they need to navigate complex systems. Get it delivered to your inbox each Sunday morning or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Spotify, Apple Podcasts, or Instagram or, visit the Medical Motherhood merchandise store to get a T-shirt or mug proclaiming your status as a “medical mama” or “medical papa.”

Do you have a question about raising disabled kids that no one seems to be able to answer? Ask me and it may become a future issue.

Across the world this summer, record-setting temperatures could mean poor outcomes for pregnant women and their babies.

As climate change continues, longer, hotter and more frequent heat waves could lead to a rise in Neonatal Intensive Care Unit stays and possibly even lifelong health conditions.

A study in the International Journal of Environmental Research and Public Health said as much in 2017: “We are likely to see an increase in preterm birth, a decrease in birth weight, and an increase in stillbirth rates,” the study reads. “After birth, neonates may be susceptible to heat-related morbidity and mortality, though additional research is required.”

The researchers also noted that for some reason pregnancy had not been considered a risk factor in public health advisories on heat waves before.

“…when considering the exaggerated impacts of heat, pregnant women must also be included as an at-risk class,” they recommended.

California researchers also looked into this question by comparing rates of early delivery with exposure to heat the week before birth.

“We found a consistent pattern: exposure to extreme heat does increase risk,” said first author Sindana Ilango, a PhD student in the Joint Doctoral Program in Public Health at UC San Diego and San Diego State University in this 2020 press release. “And, importantly, we found that this was true for several definitions of ‘heatwave.’”

Having birthed my twins three months premature during the summertime, I wondered what this meant in areas like mine. Here in the Pacific Northwest, heat waves are few and far between — or at least they used to be. As a result, about a third of households here in Portland do not have home cooling systems. In 2021, however, we had our highest-ever recorded temperature of 116 degrees. Those days of extreme heat last summer killed 72 people in Multnomah County alone.

As a weeks-long stretch of abnormally high temperatures barreled down the forecast here — and seemingly across the entire Northern Hemisphere — I wondered what my local children’s hospital thought about the risks to pregnancies.

“There is growing evidence that climate change and extreme ambient heat is associated with a number of adverse pregnancy outcomes including low birth weight, prematurity and birth defects,” Oregon Health & Science University spokeswoman Nicole Rideout said in a statement. But she added a huge caveat: “there [are] large gaps in our knowledge base that prevent us from concluding that extreme temps cause low birth weight or preterm delivery.”

What about heat causing an increase in disabilities? “There is data that supports the idea that extreme heat increased risk of birth defects – mostly from studies of fever in pregnancy,” Rideout wrote.

Looks to me like — once again — issues that could be of paramount importance to pregnant women and children remain unstudied even though the evidence we do have suggests that this could be a really, really big deal.

In an increasingly warming planet, what’s a pregnant body to do to avoid this potential risk?

Here are some tips for staying cool, with or without A/C:

*       Call 2-1-1 to look for cooling centers in your area if you don’t have a home cooling system

*       Rig up a cheap but effective cooling system with a fan and some ice.

*       Stay well hydrated — pregnant people need tons of water, even if it feels annoying to pee all the time

*       Limit sun exposure with shortened outings and proper clothing like wide-brimmed hats

*      Recognize the signs of preterm labor and call your doctor or go in to be checked out if you experience them

*       Affirm to yourself that — especially during a heat wave — it’s OK not to do that baby room project right now or to not hit your exercise goal for the day. YOU ARE GROWING A WHOLE HUMAN. That is already enough accomplishment for one day. Chill!

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Business Insider: “A mom of a disabled child receives $5,000 a month through an Oregon paid caregiver program — but she's scared of what will happen when the payments stop this year”

In Silverton, Oregon, Emily and her husband, Michael, take care of their 6-year-old daughter, Juniper, who has multiple disabilities and complex chronic illnesses. Juniper requires specialized, round-the-clock care, which has impacted both parents' ability to work outside the home. 

Juniper is predominantly G-tube fed, which means a tube is inserted directly into her stomach to deliver food and nutrients. Additionally, Emily tells Insider, Juniper sometimes has seizures from a common cold or flu that last anywhere from 30 minutes to two hours. The couple's last names have been withheld to protect their privacy.

Because Juniper is immunocompromised, the family have been isolating and taking extra precautions even before the COVID-19 pandemic started. "My spouse and I gave up our careers to care for her," Emily tells Insider. "As an educator and social service provider, I would bring home everything — the flu, respiratory illnesses, and other illnesses that would cause really severe effects that able-bodied kids are able to fight off."

[…]Now, through [a] Medicaid program, the family receive[s] $5,000 a month for Juniper's full-time care. The ODDS office says this temporary program will end once the federal public health emergency expires, which is now scheduled to end on October 13, 2022 (it was previously set to expire in July). Unless the public health emergency is extended, the family will stop receiving monthly payments on October 13.

• From Today: “Moms want stillbirths to be covered by paid family leave”

“A mother buries their child that they carry nine months — when they go through all the physical aspects of birth and undergoing all the postpartum horrific symptoms that every other female goes through — and now you’re telling me that because my baby didn’t live I’m not entitled to the benefits?” [New York resident Cassidy] Crough said. “(It) was an emotional slap in the face.”

But Crough is hoping that her experience will spark a change and encourage the state to cover paid leave for parents of stillborn babies.

“It should be changed to ‘postpartum leave’ because that will encompass everyone that gives birth to a child. If you birth a child, whether it’s C-section or vaginal, you should be getting paid family leave because your body is undergoing a trauma,” she said. “It’s quite frankly a medical concern to have women returning to work before at least six weeks.”

• From President Joseph R. Biden: “Proclamation on the Anniversary Of The Americans With Disabilities Act”

On July 26, 1990, with the signing into law of the Americans with Disabilities Act (ADA), our Nation created the world’s first comprehensive declaration of equality for people with disabilities.  Since that time, this landmark legislation has been a driving force in moving America closer to the promise of equal opportunity, full participation, independent living, and economic self-sufficiency for the 61 million individuals with disabilities in our country.  The ADA prohibits disability discrimination by State and local governments; provides standards for access to places of public accommodation; protects people with disabilities from discrimination in the workplace; and ensures equal access to health care, social services, transportation, and telecommunications.  But even more than that, it enshrines the idea — central to the spirit of our Nation — that all of us are deserving of equal dignity, respect, and opportunity.

Medical Motherhood is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.

Medical Motherhood is a weekly newsletter giving those raising disabled children the news and information they need to navigate complex systems. Get it delivered to your inbox each Sunday morning or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Spotify, Apple Podcasts, or Instagram or, visit the Medical Motherhood merchandise store to get a T-shirt or mug proclaiming your status as a “medical mama” or “medical papa.”

Do you have a question about raising disabled kids that no one seems to be able to answer? Ask me and it may become a future issue.

Language evolves and the disabled community is not a monolith. There are different and changing opinions on what are — and are not — appropriate ways to refer to the experience of being physically or mentally different than nondisabled people.

In the recent New York Times essay “‘Is that Ableist?’ Good question.” blind writer and performer M. Leona Godin wrote about her experience as a Gen Xer speaking to two younger activist friends. Her exclamations that she felt “dumb” or “stupid” were met with admonishments of being “ableist.”

“I began to sense a generational divide. The word “ableist” was definitely not one I heard as a kid. And while today I have as much disability pride and blind pride as anyone I know, I get stuck sometimes on the ableist language — and humor — that I grew up with as a Gen Xer.”

Having been in the disability rights space for more than a decade, I was surprised to discover that ableism — the disability corollary to racism, sexism and other prejudice— is still a niche concept.

Google Trends is a way that anyone can see how popular different search terms are and how that has changed over time. The data go back to 2004.

“Ableism” as a search term is relatively rare but has grown substantially in popularity since May 2020. There was also a massive spike in searches the week of June 11 to 18 of this year. That was when pop artist Lizzo released a song with the lyric “spaz” — a term with derogatory roots that refer to the tight, spastic muscles some people with cerebral palsy experience. (After listening to fans, Lizzo rereleased the song without the offending lyric just days later.)

But — during the course of the last 18 years — “ableism” is still practically un-searched-for in four states: Alaska, Wyoming, North Dakota and South Dakota. People in Vermont have searched for it the most, followed by Washington and my home state of Oregon. Most people seem to be looking for its definition and meaning.

This is part of how language evolves. New words grow in popularity and old ones fall away. There is an entire campaign, for example, to get people to stop saying the “r-word.” Interestingly — as I noted in this post last year — “retard,” “handicapped,” and “moron” were orginally introduced as more polite alternatives that became offensive over time. “Cripple” has had the reverse fortune: it has now been reclaimed by many disabled people.

Many Gen Xers and Boomers may cringe at my use of “disabled people” instead of “people with disabilities.” The debate over “person-first language” and “identity-first language” continues, but the newest trend in most circles seems to be to honor disabled identity by using it first.

“Special needs” is how most people these days refer to disabled children but there is a popular belief in disability rights circles that that is because parents cringe at giving their children a “disabled” label. This message doesn’t appear to be getting through to the mainstream though — the frequency for “special needs” as a search term has stayed steady since 2004. This 2016 study was able to take a longer view and found that the term has gained popularity as a euphemism in books since the 1970s even as “handicapped” sharply declined.

The same study used short character descriptions to determine that when a person is described as having “special needs,” rather than “a disability,” they tend to be viewed more negatively. This was even true among people with a personal connection to disability, like parents of disabled children.

So that is why I no longer use “special needs” to describe my children, nor do I describe myself as a “special needs mom.” In fact, that is the reason I called this publication Medical Motherhood — so that we could start to have new labels for a common experience.

Unflinchingly using the terms “disabled” and “disability” is considered the most respectful terminology today — despite the words’ 16th century roots in the rather barbaric English Poor Laws. So I also looked up the Google trends for those words and found that “disability” is most commonly used as a euphemism not for people but for government aid checks — Social Security Disability Insurance and Supplemental Security Income.

The search term “disabled” isn’t most frequently associated with people either. It is correlated to searches for iPhones and other broken or locked technology. This leads me to wonder if — in 20 years when raised-on-technology Gen Alpha is in charge — that term will be considered disparaging too.

If it is, I hope we all maintain the flexibility of mind and openness of spirit to evolve our language and learn from those most affected.

Want to learn more about this topic? The Nora Project is hosting a 60-minute online webinar on disability history and language for $25 on Aug. 11. A recording will be available if you can’t make the 7:30 p.m. central time.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Jezebel: “Celeb Actually Takes Accountability For Problematic Thing”

On Monday, [June 13], disappointed Lizzo fans stormed Twitter to call out the rapper’s use of the ableist word “spaz” (“Do you see this s**t? I’m a spaz”) in her song “Grrrls.” And Lizzo’s prompt response should serve as a lesson to all public personalities on how to respond when you do something controversial or inadvertently hurt people.

[…]“Let me make one thing clear:[“ Lizzo posted in a note on Twitter “]I never want to promote derogatory language. As a fat black woman in America, I’ve had many hurtful words used against me so I understand the power words can have (whether intentionally or in my case, unintentionally.) I’m proud to say there’s a new version of girls with a lyric change.”

• From Boston 25 News: “25 Investigates: Kids with developmental disabilities hit hard by mental health crisis”

According to the Massachusetts Health and Hospital Association, 619 patients, including 78 pediatric cases, were boarding in emergency rooms or other medical floors across Massachusetts hospitals as of July 5th.

“It’s going to be important and crucial that we develop a hybrid system of being able to provide in person services and telehealth services to meet the level of challenges that that all of these kids have,” said Dr. David Cochran, director of the CANDO center.

The Worcester facility he runs offers specialized resources for kids with autism spectrum disorders and emotional health struggles on an outpatient basis.

Cochran adds that more community-based centers and mobile crisis teams are a must if the needs of this vulnerable population are to be met.

“Prior to [COVID-19], kids with autism spectrum disorders were nine times more likely to present to an emergency room for psychiatric concerns and six times more likely to need hospitalization than kids without autism,” he said.

[Mom Jennifer] Drohan says families of individuals with developmental disabilities deserve a level playing field.

“We have a responsibility to not just sit by and say this is a broken system,” she said. “We are in grave need of those clinicians that understand the intersection between both disabilities like autism and mental health.”

• From The Wire: “How Children With Special Needs Are Being Left Out of Mainstream Education in India”

Bengaluru: “Nobody accepted my child into a mainstream school,” said Sudha Madhavi, whose child, Raju has epilepsy, autism and a learning disability. She had to teach her son at home all by herself.

“I am alone fighting for my child,” she told The Wire. Teachers have said that he can’t sit in one place, that he has difficulty learning what is being taught and that he disturbs others. “What can I do? I have to accept the social norms, right?”

While Raju eventually managed to study in a vocational school, not every child with a disability is admitted to mainstream educational institutions. In fact, out of 78.64 lakh [— or what Americans would call 7,864,000 —] children with disability in India, three-fourths of those aged five years don’t attend any educational institution, according to a 2019 UNESCO report.

Additionally, 12% of the children with disability have dropped out of school and 27% of children with disability have never attended any educational institution.

Medical Motherhood is a weekly newsletter giving those raising disabled children the news and information they need to navigate complex systems. Get it delivered to your inbox each Sunday morning or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Spotify, Apple Podcasts, or Instagram or, visit the Medical Motherhood merchandise store to get a T-shirt or mug proclaiming your status as a “medical mama” or “medical papa.”

Do you have a question about raising disabled kids that no one seems to be able to answer? Ask me and it may become a future issue.

July is Disability Pride Month!

The celebration is a tradition that started in New York City with a parade to mark the July 26, 1990 signing of the Americans with Disabilities Act. 

That means just over 30 years ago discriminating against someone because they had a disability was often completely legal.

It’s not easy to change a law, but social and cultural change can come even slower. I know because I’m still learning how to be an ally and I’ve been intensely interested in disability rights for more than a decade.

Here are three books that I’ve found most helpful to educate myself, as well as five of my favorite books for children. Many of them are written by disabled creators. Check them out from your local library, buy them from your local bookstore or simply follow these affiliate links to Amazon. (As an Amazon Associate I earn from qualifying purchases.)

Books on disability for adults:

About Us, essays by various authors, edited by Peter Catapano: Taking its name from the disability rights slogan “Nothing about us without us,” this book is a reprinting of columns from a New York Times series. The writers speak candidly about a range of disabled experiences — which are certainly helpful perspectives for parents and others raising disabled children.

Disability Visibility, essays by various authors, edited by Alice Wong: In this collection of essays, I especially enjoyed Harriet McBryde Johnson’s account of participating in debates on whether parents should have the right to allow the baby she had been to die. (Wong also has a newsletter and a new memoir coming out soon.) Disability Visibility is also available in a version for young adults.

Being Mortal, by Atul Gawande: This is not marketed as a book about disability, however, as an able-bodied person it helped me realize that disability justice issues are nearly universal. Almost everyone will become disabled toward the end of their life or care for someone who becomes disabled. By that time, people are often too frail or discriminated against to effectively advocate for themselves. This very readable book is a wake-up call that disability rights are not only the moral thing to do but also a more personal issue than most people imagine.

Books on disability for kids:

A kids book about disabilities by Kristine Napper: A Kids Book About is a publishing company founded in my hometown, Portland, Ore. They publish all kinds of books about tough topics. This one is a great way to introduce kids to ways of talking to disabled people and why it’s impolite to stare.

We Move Together by Kelly Fritsch and Anne McGuire: This delightful book for elementary kids shows why it’s best when everyone is able to access the same things.

Not So Different: What you really want to ask about having a disability by Shane Burcaw: Kids are curious and that’s OK. In this book they get the answers to many of their questions — even the ones that aren’t polite to ask.

Someone Special Just Like You by Tricia Brown: I really like this book for preschool-aged kids. The pictures and use of “special” are a little dated but it shows disabled kids in relatable environments — at home, blowing bubbles, in the park.

All the Way to the Top by Annette Bay Pimentel: This book follows the journey of disability rights activist Jennifer Keelan-Chaffins. As a child, her iconic climb to the top of the steps of the Capitol Building in Washington, D.C. helped cement the push to pass the Americans with Disabilities Act.

Do you have any favorite books on disabled life for adults or kids? Let me know in the comments or by replying to this email.

A version of this story ran on July 18, 2021.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Queen Creek Tribune (Arizona): “Queen Creek family finds relief with new law”

For families of medically fragile children, help has arrived.

[Arizona] Gov. Doug Ducey signed the Family Licensed Health Aide Program into law in March 2021. More than a year later, the Arizona Board of Nursing and Arizona Medicaid has certified approximately 50 parents now trained under this program, including one in Queen Creek.

Colby Kostur, regional vice president of operations for Team Select Home Care, said this program will help these families cope with personal financial burdens and the nursing shortage at large.

[…]With [mom] Brandilyn [Coon] now certified as an LHA working for $16.50 an hour and clocking in 32 hours per week, the program as made a tremendous difference for the family.

She said the biggest concern among families like hers is the divorce rate among the parents due to the stress from issues such as finances.

But along with counseling and this new program, she said she and her husband feel fortunate to have this help compared with those struggling as single parents.

“It’s been a major financial relief, to say the least, to have this income come through, and so that my husband doesn’t feel complete burden for our family,” she said.

• From Willamette Week: “Major Autism Services Provider to Close in Oregon”

The Center for Autism and Related Disorders informed state officials last week it will close its 10 Oregon clinics in August, resulting in the layoff of 156 staff members.

Texas-based CARD is the largest provider of an autism treatment called applied behavior analysis. Tobi Rates, executive director of the Autism Society of Oregon, says that although the therapy is controversial in some circles, it qualifies for broad insurance coverage from both private and public payers.

“It’s a big deal,” Rates says of the closures.

The widespread and growing prevalence of autism spectrum disorder—1 in 44 8-year-olds have it, according to the U.S. Centers for Disease Control and Prevention—has attracted investors to the field. The Blackstone Group, a leading private equity firm, purchased CARD in 2018 for a reported $600 million.

• From Disability Scoop: “Data Suggests Autism Rate Is Still Growing”

New research finds that autism prevalence among U.S. children is continuing to rise.

In a study looking at data on more than 12,500 kids ages 3 to 17 across the country, researchers determined that 3.14% had autism.

[…] Boys were nearly three times more likely than girls to be on the spectrum, according to the study findings. And, there was a “significant difference” in prevalence based on a family’s economic status with lower income children more likely to have autism.

The overall autism rate identified in the study is significantly higher than other estimates in recent years.

• From The Times of India: “AICTE model institutes to ensure inclusivity of disabled children”

The All India Council for Technical Education (AICTE) is in the process of transforming some of the affiliated institutions into model institutes for physically challenged students.

The institutes will ensure the inclusivity of physically challenged students in the mainstream education system. The Office of Accessible Assistive Technology (OAAT) will be set up in each of the model institutes that will be instrumental in helping disabled students.

Different categories such as Cognitive, Locomotive, Visual and Hearing Impairment have been slotted to help the students. AICTE aims to create at least 5 model institutions by the end of this year.

Medical Motherhood is a weekly newsletter giving those raising disabled children the news and information they need to navigate complex systems. Get it delivered to your inbox each Sunday morning or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Spotify, Apple Podcasts, or Instagram or, visit the Medical Motherhood merchandise store to get a T-shirt or mug proclaiming your status as a “medical mama” or “medical papa.”

Do you have a question about raising disabled kids that no one seems to be able to answer? Ask me and it may become a future issue.

The second Sunday of every month Medical Motherhood publishes Where Is the Manual for This?!, an editorial cartoon by Lenore Eklund.

Medicalized equipment always costs five times more than I think it will! Can you relate? Let us know in the comments.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Eugene Weekly: “A Care Coalition: Paid parent caregivers fight for funding”

Paige Hall is a parent advocate who struggles to find caregivers for her medically fragile son. She says, “There is definitely a shortage of people who are able to work.” Her son’s special needs qualify for enough state-allotted hours to cover both a full-time and a part-time caregiver. Hall says finding the right fit for the job is difficult.

“We did have two caregivers kind of just up and quit one day. It’s hard to find qualified, consistent and reliable caregivers,” Hall says. “It was very stressful and heartbreaking for my son.”

While struggling to staff caregiving hours with reliable employees, Hall says she takes on much of the care her son needs herself. Getting paid for the work she already does is something she says has helped her family immensely. She says with access to these paid hours, she no longer has to worry about basic needs like paying for bills, food and transportation to regular doctors’ appointments.

“When this program started, of course I jumped on it right away because the labor is already there, it already exists,” Hall says. “He needs physical help; he needs medical help; he needs somebody there to create a consistent and reliable structure and routine. I’m already doing those things.”

Before COVID, parents were prevented from qualifying for being paid for caregiver hours by an Oregon law, with an exclusion that bars providers from offering services if “the individual is a child and the independent provider is the parent of the child.” The COVID-related qualification now allows parents to provide paid care for their disabled children if those children qualify for 240 or more caregiver service hours a month.

• From The Oregonian/OregonLive: “Hundreds of Oregon’s disabled students are illegally denied full school days, new report finds”

The report details “obfuscation, hostility and silence the consultant was met with by districts,” [State Sen. Sara Gelser Blouin] said. She called that mistreatment “reflective of the experience students and parents have every day.”

The report found that while a majority of Oregon’s students with disabilities live in cities and large urban areas, the largest number of students placed on shortened school days live in small and mid-sized cities or towns. Most are of elementary school age.

Gaps in data were also identified as a major systemic issue. One anecdote: A school district’s records on shortened school days were kept in a notebook that went missing. Another: Special education records were stored “in the head” of the district’s head of special education, who subsequently passed away.

The report calls on the Oregon Department of Education to implement six specific recommendations, the most crucial of which is to implement clear, firm guidance to school districts on what situations in which it is appropriate to use shortened school days and the correct process to do so. It also suggests the department study and explore ways to help fill staffing shortages for special needs classrooms in rural areas, as well as boost support for student mental health services statewide.

• From The Gazette (Iowa): “Democrat Deidre DeJear calls for expanded access to respite care in Iowa”

“Organizations like this could be doing more if we had more people working in the industry,” [gubernatorial candidate Deidre DeJear] said. “How do we do that? Well, part of that is increasing the reimbursement rate because the cost of business has gone up.”

While Camp Courageous does not receive direct government aid, many families who send their children to the camp do through Iowa Health and Community Based Services funding for waiver programs for individuals with brain injuries and intellectual and other disabilities, camp CEO Charlie Becker said.

While the camp does not endorse or support any particular candidate, Becker said DeJear’s visit provides greater exposure “and a good living testimony” to the opportunities, needs and activities available to people with special needs in Iowa.

Becker hoped DeJear’s visit “can expose the camp to a lot of people that could potentially be our future staff.”

“We’re, like everybody else, short on staff,” Becker said.

Before the pandemic, Becker said the camp averaged about 10,000 campers a year. Normally, during the summer, the camp would have 100 campers and 100 staffers for the week.

“Right now, we’re at less than half of that just because of staffing,” he said. “The demand is huge.”

• From CHAT News Today (Canada): “Father of disabled daughter calling for change to licensed child care regulations”

MEDICINE HAT, [Alberta] - For Ryan Kingsley the past few months have been hard. That’s because he has been scrambling to find after school care for his 13 year-old disabled daughter who has Rett Syndrome.

[…]“It’s especially stressful when you have a disabled child. You know we are constantly worried about her health and all the complexities that go along with having a disabled child but then to get the added stress of, for all intents and purposes getting kicked out of a program that she requires for school, it is really really extremely frustrating,” he said.

[…]“The Government restricts licensed child care programs to children between the ages of 0-12. Once a child turns 13, they are no longer allowed to be in a licensed childcare program anywhere in the province. Again, this is a government regulation and not a YMCA decision or choice,” said YMCA of Medicine Hat CEO Sharon Hayward.

According to the office of the minister of children’s services, licensed child care programs must provide care to children with disabilities under the Early Learning and Child Care Act.

“The Early Learning and Child Care Act allows licensed child care programs to continue the enrolment of a child with a special need or disability up to the age of 15, and Inclusive Child Care (ICC) supports such as onsite training and coaching, and access to funding for short-term engagement supports are available to help licensed child care programs accommodate children with special needs.” said Andrew Reith, spokesperson for the minister of children’s services.

But the province stressed, that once a child with a disability reaches 13, childcare providers are no longer mandated to provide that care.

Medical Motherhood is a weekly newsletter giving those raising disabled children the news and information they need to navigate complex systems. Get it delivered to your inbox each Sunday morning or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Spotify, Apple Podcasts, or Instagram or, visit the Medical Motherhood merchandise store to get a T-shirt or mug proclaiming your status as a “medical mama” or “medical papa.”

Do you have a question about raising disabled kids that no one seems to be able to answer? Ask me and it may become a future issue.

Another of my speaking engagements was published this week, right on the heels of last week’s Oregon Public Broadcasting panel discussion.

I was so honored to be asked to speak at the National Academy of Sciences, Engineering & Medicine’s June workshop: Supporting Children with Disabilities: Lessons from the Pandemic. But it was especially a treat to present alongside folks like North Dakota’s Medicaid Director Caprice Knapp and Dr. Carolyn Foster, who has an amazing body of work on family-centered metrics for the care of disabled children.

Now that the conference videos have been published, I strongly encourage folks to check out the information offered. In the few presentations I’ve been able to watch so far, there is so much good research and passionate speakers for children’s rights and access to quality supports.

My takeaway? We’re not crazy! Pretty much everyone is feeling like the system is seriously broken for kids.

Dr. Amy Houtrow, a pediatrician and health researcher, led the conference. Houtrow summarized a major research project published recently in the journal Pediatrics called A Blueprint for Change: Guiding Principles for a System of Services for Children and Youth With Special Health Care Needs and Their Families. Turns out that 85 percent of families of “children and youth with special health care needs” — a federally defined term — feel that they are not operating in a well-functioning system. And 90 percent of families of disabled children — a subcategory comprising about half of the 14 million American children and youth with special health care needs — think the system isn’t working well. These abysmally low satisfaction rates are a point or two higher if the respondent was white or upper income, but they were lowest for Hispanic families.

The conference was designed to look at what had worked well during the pandemic, and many speakers (like me) advocated for a continuation of emergency flexibilities in health care and social services. Dr. Rishi Agrawal, a physician and professor of pediatrics at Lurie Children’s Hospital in Chicago, enumerated the rights to screening and treatment that children have under federal law. He pointed out that the temporary emergency rate increases, paid parent-caregiving, and telehealth coverage had been shown to be beneficial.

“The question that I want everybody to think about — given the rights that were just enumerated — is should we view them as ‘flexibilities’ or are they expectations in order to be compliant with both the spirit and the letter of the laws, especially Medicaid and EPSDT around what children have a right to?” Dr. Agrawal asked in his presentation. (EPSDT refers to the Medicaid program of Early and Periodic Screening, Diagnostic, and Treatment — comprehensive and preventive health care for young children.) He continued: “Is it truly optional to do the things we did in the pandemic for children?”

My presentation focused on the paid parent-caregiver program. How some states had been doing it even before the pandemic and why I believe the temporary allowances offered during the public health emergency in states like Oregon should continue. I was pretty nervous to give a presentation on such a controversial topic in front of such a venerated audience but I was pleasantly surprised. Many of my co-panelists kept referring to my presentation and agreeing with it.

If you want to watch our discussion, check out the video on this webpage. In the drop-down menu in the top left corner of the video, select video 8 of 19. My segment starts at minute 19:00. The panel’s Q&A discussion, which I also recommend, is video 9 of 19.

Of course, if you have more time, the whole conference is great to watch if you have time and interest in the 19.4 percent of American children who have special health care needs.

As Dr. Houtrow summarized: “It is well-known that the system of services and supports was not meeting the needs of children with disabilities generally and the situation was even worse for children who are multiply marginalized. The COVID pandemic has exacerbated these problems. But that means that we have opportunities to do better.”

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From MarketWatch: “‘We are so burned out, exhausted, overworked and overtired’: Women plead with Congress to act on paid leave and rising child-care costs during emotional hearing on Capitol Hill”

Donna Price of Cleveland had a similar story of making tough choices during the pandemic. She cares for her 18-year-old autistic son and her disabled mother, on top of being a nurse. Her son’s mental health has suffered during the pandemic, and Price said that she had to take eight weeks off without pay to supervise him early last year, when his school and care program went fully remote due to a surge in the virus.

“I struggled to pay rent, put gas in my car, buy groceries, and pay for my mom’s medications,” Price, who is also a member of MomsRising, said. “I was facing $2,000 in unpaid gas bills and $800 in unpaid electric bills. We only made it through with help from my older son and my daughter, who’s a social worker and a police officer. Otherwise, I don’t know what I would’ve done.” 

Eventually, Price had to leave her job at a hospital and take a contract nurse position so she could have more flexibility and better care for her son and mother — even though that meant lower pay and fewer benefits. 

“I know so many working women can relate to my story,” Price said. “As moms, essential workers, and caregivers for elderly parents, we go out every day and do what we need to do to make sure everyone else is cared for. But sometimes it feels like no one is making sure we’re okay. There are days when I just want to know that my health and my financial and emotional well-being matter. That my elected leaders have my back.”

• From Disability Scoop: “With Roe Overturned, Advocates Fear Disability Rights May Be Next”

Earlier this month, after a draft of the Supreme Court’s decision in the Dobbs case had leaked in May, the Autistic Self Advocacy Network as well as the Disability Rights Education & Defense Fund, AAPD, the Autistic Women & Nonbinary Network, Little Lobbyists and Be A Hero issued a 10-page memorandum outlining a myriad of ways that the ruling could affect disability rights. The document also highlighted the instability that would be introduced into the legal system if the Supreme Court moves away from its long-held practice of following the rules set by previous cases as much as possible.

The memo warned of “devastating consequences” if the draft was not “significantly altered” before it was finalized. But, last week’s ruling largely mirrored the draft.

“Today it was the right to an abortion, tomorrow it could be other important rights like choice of who one can marry or access to other types of reproductive health,” warned Eric Buehlmann, deputy executive director for public policy at the National Disability Rights Network. “For people with disabilities, it might also mean whether or not they have a say in being sterilized, or whom they have intimate relations with or the choice to live in the community guaranteed by the Olmstead decision. This uncertainty that the Supreme Court can take away rights that people have had for decades is bad for all American society, including people with disabilities in so many different ways.”

• From SPARK for Autism: “Lessons from a Study of Severe Autism”

Researchers studying these hospitalized patients have learned several things about autism and psychiatric conditions. Some of their findings include:

• Youth who spoke fluently experienced more depression, and more defiant and argumentative behavior, than those who did not.

• 22 percent of the youth who spoke fluently had talked often about death or suicide.

• About one in four had been the victim of physical, emotional, or sexual abuse, according to their parents. A small percentage of those youth also had post-traumatic stress disorder, also called PTSD.

• Several factors increase the chances that an autistic child or teen will be hospitalized for psychiatric reasons. Having a mood disorder – such as depression or bipolar disorder – is number one. The second most common factor is having a sleep disorder.

“Having sleep problems was a powerful and independent risk factor for psychiatric hospitalization,” explains [Dr. Matthew] Siegel, who is vice president of medical affairs for the Developmental Disorders Services at Maine Behavioral Healthcare.

Medical Motherhood is a weekly newsletter giving those raising disabled children the news and information they need to navigate complex systems. Get it delivered to your inbox each Sunday morning or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Spotify, Apple Podcasts, or Instagram or, visit the Medical Motherhood merchandise store to get a T-shirt or mug proclaiming your status as a “medical mama” or “medical papa.”

Do you have a question about raising disabled kids that no one seems to be able to answer? Ask me and it may become a future issue.

Medical Motherhood subscribers! These conversations are breaking into the mainstream. This week, Oregon Public Broadcasting’s Think Out Loud aired an episode all about in-home caregiving. You may recognize the first guest… it was me!

The episode was actually recorded a few weeks ago in front of a live Zoom audience, which made for a great conversation with the audience, most of which occurred in the chat, so it was interesting for me to listen back to this as, well, I admit I hadn’t been paying full attention to some of the other speakers.

For accessibility, I’m going to distill some of the key points here but podcast listeners should check out the full show at this link or in their favorite podcast streaming service.

Longtime radio host Alison Frost put together the panel of five people in the caregiving world. Going into the show, I really felt like I wanted its broad audience to understand how what has been going on in the wider world during the pandemic is related to what disabled people and their families had been living already.

Frost started out asking me what my sons’ needs are:

“It’s (all) day long. It involves tube feeding and all of the personal hygiene things,” I said. “But, really, we’ve managed to structure our lives so that it’s just another need. It’s not a ‘special’ need.”

We referenced many past issues of Medical Motherhood, such as the stories of Carly and Cyndy. (By the way, please send strength to Cyndy right now as her daughter passed away this week. You can do that on Facebook.)

We also talked about the movement to continue to allow parent-caregivers of minor children to be paid in Oregon.

“The family is a unit, right?” I said. “So if you pay for the labor that parents are already doing — because they can’t work outside of the home due to these needs — it really lifts up the whole system and allows for children’s lives to be better.”

The next speaker, Susan Hedlund of the Knight Cancer Institute, said it would be expensive to pay all the unpaid caregivers in the country — which she put at 52 million. Hedlund went on to cite statistics about how detrimental caregiving is to mental and physical health. She said 63 percent of elderly caregivers die earlier than their peers. For younger caregivers, the rates of early death are around 40-50 percent. She said that is why it’s important for families to get support — including outside caregiver help.

I agree that we need a quality workforce of awesome caregivers, but I quibble with the idea that it would be more expensive to pay family caregivers when the costs of not paying them are so high.

“Yes, it will actually cost money to fulfill Oregon’s promise to its disabled children for these in-home caregiver hours,” I said. “Right now they are balancing the books on the backs of unpaid, mostly parents, who are doing this labor. They have already assessed our children and found that their needs are many hours per week more than a typical child their age and yet about half of those hours are unused. And I know anecdotally from the community that the ones that are used are (usually) other relatives — non-parent caregivers — because it’s very difficult to find quality caregivers. And I’m lucky to have the ones that I have and I’m lucky to have the family members that I have. But those needs exist. And they exist at 3 a.m. and they exist on weekends and they exist on holidays and there is somebody who is doing that work and I think that we should pay them to do it.”

Frost asked me if there are hopeful signs from the Oregon legislature.

“Democracy is a slow and messy process, right?” I said. “So, it was very nice when — like I said — everybody was experiencing a public health emergency. All the sudden, the solutions were really clear. You know, let’s get rid of all this red tape, let’s make work from home easier, let’s have all this flexibility. Suddenly when it’s you and your life, it makes sense to have all these freedoms but when it’s those people over there it’s different.

“[…]I had a lot of hope that our global collective experience of a new normal was going to have a lot of change in people’s minds and hearts about what’s needed to have a truly inclusive society. To have those schools that are designed for everybody, to have those government services truly support the people that they intend to serve. What I’ve seen is that a lot of people are kind of clinging to the old normal. And I get it. I went through that too with our personal health emergency and it’s not easy and it’s scary. But what I can tell you from being on the other side of that is that there is a whole world of possibilities you didn’t even know existed. There are so many ways for our services to be designed better and we just have to be willing to accept the new normal.”

Sabine Wilson, a writer from Lincoln City, then talked about her experience trying to get signed up as a caregiver for her boyfriend’s sister. It was a nearly 6-month process that eventually ended when she was able to ditch the county process and sign up through an agency.

The delay was “not from lack of trying,” Wilson said, “but it was a lot of back and forth with this bureaucratic system that kind of values the procedure over helping the families that they are supposed provide help for, in a world that was not built for families like ours, in a world that was not built for people with disabilities. It’s already hard enough finding the resources that we needed to be the best care providers that we could while also taking care of ourselves and the system was just a lot of back and forth, unreturned phone calls, emails pointing me in different directions, back and forth and it was just incredibly frustrating. I started off with a lot of drive and ended feeling really defeated.”

She said the only advice she had to others was not to quit the process because they deserve to be paid for their labor.

“It’s hard because you want to give advice to people on an individual level but it’s a systematic issue,” Wilson said.

Susan Biel, who takes care of her aging mother in Northeast Portland, said the adjustment was difficult as she didn’t previously know anyone who was a caregiver.

“We both had to learn how to navigate without me being too helpful or having too high of expectations,” she said. Biel is on Social Security Disability Insurance herself for multiple sclerosis, which typically means a person cannot be paid for their labor without jeopardizing their benefits.

She said she felt overwhelmed by the amount of information on the internet and so appreciated a course called Powerful Tools for Caregivers.

The co-founder of that program is from Portland, Oregon, and was also on the show. Leslie Congleton said researchers have found the six-week course, either in-person or virtual, has four major benefits: increases a caregiver’s sense of self-efficacy, their commitment to self-care, their use of community resources and their management of challenging emotions.

But Congleton also said that with one in five people being caregivers, the demand for support is great.

“We could never have enough programs like Powerful Tools for Caregivers to meet the needs,” she said.

Personally, I think the right supports are possible, as long as we keep having conversations like these.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Disability Scoop: “Across US, Special Education Enrollment On The Rise”

The number of students with disabilities in the nation’s public schools is growing, according to new federal data.

There were 7.2 million students ages 3 to 21 served under the Individuals with Disabilities Education Act during the 2020-2021 academic year, accounting for 15% of all students.

That’s up from the 2009-2010 school year when 6.5 million children were served under IDEA, representing 13% of public school students.

[…]Of those with disabilities during the 2020-2021 school year, the most common diagnosis was specific learning disability, which affected a third of students served under IDEA, followed by speech or language impairment and a classification known as “other health impairment.”

Autism affected 12% of students with disabilities, while 7% had developmental delay, 6% had intellectual disability and 2% had multiple disabilities.

• From The U.S. Department of Justice (press release): “Justice Department Finds Maine in Violation of ADA For Over-Institutionalization of Children with Disabilities”

On the 23rd anniversary of the landmark Supreme Court decision in Olmstead v. L.C., the Department of Justice announced today that it has concluded that Maine unnecessarily segregates children with mental health and/or developmental disabilities, in psychiatric hospitals, residential treatment facilities, and a state-operated juvenile detention facility. The Olmstead decision held that people with disabilities have a right to live and receive services in the most integrated setting appropriate to their needs — typically in their homes and communities instead of in institutions.

Disability Rights Maine, the protection and advocacy agency for people with disabilities in Maine, filed a complaint with the department on behalf of a group of children with disabilities, alleging that these children cannot access needed community-based services, resulting in their institutionalization or risk of institutionalization in violation of the Americans with Disabilities Act (ADA) and the Supreme Court’s decision in Olmstead. The department’s findings, detailed in a letter to Maine Governor Janet Mills and Attorney General Aaron Frey, follow a thorough investigation into the complaint and the State’s system of care for children with behavioral health needs.

• From the China Internet Information Center: “Across China: Special education brightens life of children with disabilities”

[…]China's regulation on education for the disabled requires access to nine-year compulsory education for all school-age children and adolescents with disabilities. No schools are allowed to decline their appeal for schooling. The requirement was simplified as "full coverage and zero rejection."

"From 2016 to 2020, we implemented two special education upgrading plans, setting up special education schools in all counties and districts with a population of more than 300,000," said Shen Jianling, director of the Tianshui municipal education bureau.

By the end of 2020, the enrollment rate of compulsory education for children and adolescents with disabilities in Gansu Province reached 96.81 percent, and there were 44 special education schools for compulsory education.

[…]In January, China's Ministry of Education, together with relevant authorities, released an action plan to boost the development of special needs education, with the aim of reaching a 97 percent enrollment rate for school-age minors with disabilities in compulsory education by 2025.

Medical Motherhood is a weekly newsletter giving those raising disabled children the news and information they need to navigate complex systems. Get it delivered to your inbox each Sunday morning or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Spotify, Apple Podcasts, or Instagram or, visit the Medical Motherhood merchandise store to get a T-shirt or mug proclaiming your status as a “medical mama” or “medical papa.”

Do you have a question about raising disabled kids that no one seems to be able to answer? Ask me and it may become a future issue.

I try to bring you quality news sources and research, dear reader, but this week I’m stumped. I looked for information specific to fathers of disabled children and found almost nothing.

There are several unique challenges for fathers in my community: increased isolation; difficulty discussing caregiver tasks; the paltry amount of resources geared towards stay-at-home dads; a sense of feeling “trapped” in a job due to the enormous pressure to provide economic stability to a family with a disabled child. In addition, a child’s disability can challenge core assumptions about masculinity: the need to perform caregiving tasks that may feel “feminine” or simply too boring; an outsized frustration with behavioral disabilities and the societal expectation that fathers can get their kids to “act right”; the disappointment at the loss of imagined sporting events or other active play. Some of these don’t have to be gendered concerns and many are simply extreme examples of typical parenting stresses, but they do seem to be common anecdotes.

A search of the National Institutes of Health’s database revealed very little data on this population. One study made a passing reference to a Canadian father who was so overwhelmed by the prospect of caregiving, that he killed his disabled daughter. Yikes.

So, as I do when research is lacking, I took to Google. Since the general population still overwhelmingly uses the terms “special needs mom” and “special needs dad,” — rather than my preferred terms of “medical mom” or “medical dad” — I did a Google News search for those terms. “Special needs mom” had dozens of recent stories. “Special needs dad” had just three, only one of which I thought was actually relevant: a story from 2020 about a Birmingham, Ala., dads’ support group.

This lack of news and information is a problem.

I think we all know that as a group, women are disproportionately impacted by caregiving needs. Mothers’ income, health and stress levels are usually more impacted than fathers’ by the birth of a child with a disability. [1] But this generation of fathers, as a group, are more involved in day-to-day caregiving than their forefathers. [2] The stresses and impacts to their lives and identities when they become fathers of disabled children needs to be seriously evaluated and supported.

One literature review I was able to find, from the Journal of Early and Intensive Behavior Intervention, said it’s crucial that fathers have support and learn to accept their child’s disabilities.

… for fathers, acceptance of the child with the disability and family harmony reduced stress. While mothers were also affected by family harmony, lower socio-economic status and greater care demands predicted stress. These differences may represent important differences in the way practitioners should intervene with mothers versus fathers. Further research is needed to better understand what contributes to maternal and paternal stress.

Further research is needed.

I don’t have the power to do that, but I do know three very rad dads with wisdom to share:

My brother, Thaddeus Moore, is the father to a child with a rare genetic disorder. He finds that when they go out together, the world largely ignores them. He isn’t sure if that’s because his son has a visible disability or because the world just doesn’t see and acknowledge fathers, or both.

“You’re kind of in your own little bubble,” Thaddeus said. “They don’t really want to include us in what’s happening most of the time.”

My dad, Terry Moore, is not a medical dad but even so he said it was difficult for him to get the support he needed as a father.

“I didn’t think you could get a group of men together who didn’t talk about sports and cars,” he said.

After pressure from my mom, he joined a support group in the 1990s and he’s glad he did. More than three decades later, he still meets regularly with his “men’s group.” These days they meet every other week on Zoom. He says it has been cathartic to have those relationships, but acknowledged the fear factor in initiating or attending a group like that.

“It’s a tough ball to get rolling,” Terry said.

My brother agreed. “As a man, it’s really hard to build up your manhood and it’s a real easy thing to lose.” Men can’t show weakness, he explained, and reaching out to your community or showing emotions is often seen as a form of weakness.

The one exception?

“Male rage,” my dad called it. Anger is one of the few emotions men feel allowed to express in our mainstream culture.

“Early on we pick up the cue that that’s how we’re supposed to express ourselves,” Thaddeus said. He added that the way he has gotten to the point of being able to talk about his emotions is through trauma-informed therapy.

“Everybody needs to be in therapy, man,” Thaddeus said. “I wish mental health stuff was free for people.”

My husband is also a medical dad, obviously. Matt Millard said he tries to think about anger as just being fear in disguise.

“I try to share with (my son) the fear that I feel instead of the anger that I feel,” he said. “If I think that it has an opportunity to teach him a lesson, I’m not afraid to show him those emotions.”

Matt said it took him many years to accept his role as a father and what it meant, but now he is happier for it.

“The hardest part of becoming a father was realizing it’s not about me,” he said. “I think the ‘traditional male role’ — one of the parts of it that has value is that you are the ‘sacrifice.’”

(You know, like in a war. I feel like I should mention that any comparison of our house to a war zone is purely metaphorical….)

“Every military person knows that there is incredible honor in service,” Matt said, “and the same is true for children. We don’t own these children, we serve them. Something that my culture and my upbringing didn’t prepare me for is how to be a servant — how to not feel like a slave when I am a servant.”

Matt said his years living in Japan gave him examples of service to a higher good that he models his life after now.

“Before I truly embraced it, I frequently had anxiety and depression, maybe even so far as disassociation — very upsetting experiences,” he said. “But ever since the purpose of my life became located outside my own body and my pleasure, my life has made much more sense.”

Designing a life around one’s own immediate wants and desires is empty and fragile, he said. But through fatherhood, Matt learned living a life in service to something outside of himself means that any temporary setback doesn’t change his purpose or identity.

“If I could teach any lesson to any human — certainly to my children — it would be that the earlier you find your purpose, the happier you’ll be,” he said.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Disability Scoop: “Biden Administration Gives States More Time To Spend Disability Services Funds”

States will get extra time to spend billions of federal dollars aimed at bolstering the beleaguered Medicaid home and community-based services system after it took longer than expected for the money to make it their way.

The U.S. Department of Health and Human Services is giving states an additional year to use funds that were made available for home and community-based services as part of the American Rescue Plan, a $1.9 trillion pandemic relief package signed in 2021. The cash infusion was intended to address pressures on the nation’s disability services system that were exacerbated by the pandemic, chiefly a long-simmering workforce crisis.

• From TODAY: “I’m a working mom and my 4-year-old son’s full-time medical caregiver. Here’s what life is like”

[…]Being his mom — and his Medical Mom — is my favorite thing in the world.

It is the singular role at which I am my best self. I must be at my best — always. Caregiving requires it.

And yet, I still recognize the me that exists beyond motherhood, and beyond even medical motherhood.

I am a woman, a wife, a daughter, a sister, a pet owner, an activist, a philanthropist, an academic, a community volunteer — and also, of course, a medical mom.

Moms can be many things, certainly, extending far beyond their parental status.

However, becoming a Medical Mom and a Family Caregiver of a child with disabilities has meant fighting like hell to remember that I am that multitude. It means fighting to maintain my own identity outside of caregiving, beyond the boundaries of my role as a Medical Mom. It means fighting for the space in my day to pursue my own interests and follow my own passions, while also being everything my child needs me to be at all times.

• From The Jerusalem Post: “Overcoming bureaucracy to help people with disabilities”

So, how many bureaucratic processes is a family with a child with special needs required to undergo in order to receive basic services? 

Unfortunately, when it comes to examining how the state provides a solution to about 330,000 families in Israel for children with disabilities, it is important to examine precisely this question.

True, if anyone were to look at the laws in the State of Israel, he/she would be overwhelmed.

[…] Because our bureaucracy in Israel is unmanageable, and in the cases of families with children with disabilities, it becomes a long and disheartening journey in a system that lacks professional logic, is divided among many bodies and is cumbersome. Special-needs families quickly realize that even though each body is committed to helping them, in the end they are left alone.

Medical Motherhood is a weekly newsletter giving those raising disabled children the news and information they need to navigate complex systems. Get it delivered to your inbox each Sunday morning or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Spotify, Apple Podcasts, or Instagram or, visit the Medical Motherhood merchandise store to get a T-shirt or mug proclaiming your status as a “medical mama” or “medical papa.”

Do you have a question about raising disabled kids that no one seems to be able to answer? Ask me and it may become a future issue.

It is extraordinary how basic some of the fights can be in Special Needs World. (That’s what I call the web of bureaucracy that ensnares parents of disabled childrren.)

Food. The fact that your child needs food, that should be a settled question, right? There should be systems and services in place to make sure children don’t starve?

In Special Needs World, multimillion-dollar companies and government agencies throw up their hands and say maybe next month your child will have food.

The national news media has focused the formula shortage on babies. It is the largest population affected by the February shutdown of the Abbott Laboratories plant in Michigan, but older children with specific dietary needs are also affected and have few alternatives.

The Wall Street Journal this week reported that the company and the U.S. Food and Drug Administration received a whistleblower complaint more than a year ago that equipment at the plant was badly in need of repair and formula was going out without proper safety protocols. Two of four babies sickened with the same type of bacteria found at the plant died.

“Frankly the inspection results were shocking,” FDA Commissioner Robert Califf said during the congressional hearing last month, comparing the conditions in Abbott’s plant in the most recent inspection to a muddy kitchen. “We had no confidence in the integrity of the Abbott quality program at this facility.”

Production restarted a week ago and supplies are expected to level out by mid-July.

Meanwhile, hundreds of parents like Jennifer Murphy of Winston, Ore., have spent hour upon stressful hour and exorbitant sums for whatever they can find.

Murphy’s 9-year-old son Preston has multiple rare conditions that mean he can only eat very specific foods without severe and life-threatening reactions. He drinks about 4/5ths of a can of Nutricia’s Neocate, a hypoallergenic formula, every day. Despite not being manufactured by Abbott, it has still been nearly impossible to find. Murphy said she has recently had to pay up to $81.25 per can. The normal price is $41.75 and it is typically free to the family as it is purchased through Preston’s medical insurance.

“There are no other options so you buy it, but I get robbed,” Murphy said. “I asked my [son’s case worker] if I could be reimbursed because Medicaid buys this for my son monthly and Medicaid is not being charged due to this shortage… I haven’t heard back and it looks like there will be no reimbursement.”

Parent Les Rogers said he is worried his 8-year-old daughter will lose weight because they can’t find enough of the calorically dense formula she needs. Gloria drinks Pediasure Peptide 1.5 cal, which means that it has 50 percent more calories per ounce than normal formula. Rogers said they are fortunate to be able to afford the high-powered blender needed to make supplemental tube food but she can’t tolerate normal meal sizes so may soon start losing weight.

Rogers said he has spent 21 hours on the phone so far trying to switch medical suppliers and jumping through hoops to try to get enough for the month.

“There’s just so many issues with the bureaucracy and insurances to try to get it done,” he said.

There are plenty of things that others could have done to prevent this — and that they need to do to avoid the next crisis.

Regulators need to ensure that a handful of companies don’t have a monopoly on the formula market — and stop banning imports from other countries.

Medicaid, and other insurance, rules make it almost impossible for families to have even a week’s supply of extra formula in case of emergencies.

First, even if the child has been on the formula for years, families must initiate the order every month and they must order in a very narrow window of time. A few days early and they won’t process the request. A few days late and they will only give you the remainder of the month and not the full supply. Suppliers are also required to ask how many days’ supply families have on hand and will not ship if it’s too high.

Finally, the amount sent is determined by a prescription. Child is a little extra hungry one day? Now you have to decide if you can give them another meal or if that means you will run out before the end of the month.

“Not everybody is a robot and needs exactly ‘this much’,” Rogers said.

The Roseburg, Ore., dad said the only way he has ever gotten a buffer supply is when his daughter was hospitalized and they were given cans to take home.

The hospital may soon be Murphy’s only option. Preston would need to be on an IV while they trialed new formulas — an expensive and dangerous solution as a wrong move could give him organ damage.  

“I am doing everything in my physical power to not change his formula,” she said, describing daily calls and searches.

Industry experts are saying they expect supplies to be back to normal by mid-July.

“The good news is that we have sun on the horizon,” Rogers said, “but the bad news is that everyone will go: ‘Whew, that’s over,’ and won’t address the underlying issues.”

In an increasingly unstable planet — with supply chain issues, natural disasters and wars — one thing is certain: There is no going back to normal.

Wondering how you can help? If you have extra supplies, Feeding Tube Awareness has a list of supply exchange forums on its website.

The second Sunday of every month Medical Motherhood publishes Where Is the Manual for This?!, an editorial cartoon by Lenore Eklund.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From the Associated Press: “W.Va. gov signs law barring abortion because of disability”

West Virginia Republican Gov. Jim Justice has signed a new law barring parents from seeking abortion care because they believe their child will be born with a disability.

Justice posted about his signature of the “Unborn Child with a Disability Protection and Education Act” on Twitter on March 21. He made the announcement about the new law in a tweet to celebrate World Down Syndrome Day.

He said the bill gives “deserved respect to our Down Syndrome community.”

The law prohibits people from seeking abortions because their child will have a disability, except in the case of a medical emergency or in cases where a fetus is “nonmedically viable.”

• From Aleteia: “Most Catholic schools can’t accommodate kids with disabilities; this woman is changing that”

[…] Francesca [Pellegrino] began talking to parents, clergy, and teachers. She saw that many other families with children with disabilities wanted to send their children to Catholic schools. 

Many were deeply frustrated that they had to send their child with disabilities to a different school alone while all the other siblings went to Catholic school together. 

Her son never did attend Catholic school, but Francesca is determined to make it possible for other children with disabilities to find a supportive and welcoming place at Catholic schools. 

[…]Francesca’s Catholic Coalition for Special Education] is present in two dioceses: Washington, D.C. and Baltimore, Maryland. But their work is gaining national attention.

The U.S. Conference of Catholic Bishops (USCCB) has invited CCSE to participate in the synod consultations on the national level about special education inclusion in Catholic schools.

“There is a lot of demand for these programs around the country,” Francesca said. “It’s a very hopeful sign that things are opening up and moving in the right direction.”

These consultations are open for anyone, anywhere in the world, to attend, thanks to an online option. The next one will take place Thursday, June 16 at 7:00 p.m. at the Catholic University of America, and you can find more information and register here. 

“The synod is calling for a journeying together,” Francesca said, “But in families with kids with disabilities, there’s still a sense of isolation that they’re in it alone and they don’t have the kind of support that they might need from their parish community.”

• From The New Times (Rwanda): “Ngoma, Rulindo students emerge winners in national ICT competition”

Moise Nahimana from Rulindo district and Yvan Gihozo from Ngoma district are the winners of the 5th edition of the Scratch Programming Competition at high school and primary school levels respectively.

The annual competition organised by Rwanda Basic Education Board (REB) is a national level competition which brings together students from all 30 districts of the country.

[…]The 16 year-old Nahimana, whose project was the best overall, shared his excitement with The New Times. “I’m so happy and very excited. I can’t wait to talk to my parents and tell them that I finally made it,” he said.

He created an online learning programme specifically designed for kids.

“My project was inspired by my experience during the lockdown due to Covid-19. During the lockdown, we couldn’t continue our studies because we couldn’t afford studying online,” he shared.

“The alternative was to follow class on TV. But it made me realize that online platforms were necessary even for children from poor families, or those with disabilities,” he continued.

Nahimana’s invention enables hearing impaired students to access the platform by availing sign language interpretations for the audio and video content.

Medical Motherhood is a weekly newsletter giving those raising disabled children the news and information they need to navigate complex systems. Get it delivered to your inbox each Sunday morning or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

Follow Medical Motherhood on Facebook, Twitter, TikTok, Spotify, Apple Podcasts, or Instagram or, visit the Medical Motherhood merchandise store to get a T-shirt or mug proclaiming your status as a “medical mama” or “medical papa.”

Do you have a question about raising disabled kids that no one seems to be able to answer? Ask me and it may become a future issue.

The idea for Social Security started in 1933 as a letter to the editor from a California doctor.  

Dr. Francis Townsend came up with the plan for a guaranteed retirement income after watching three elderly women pick through trash for food.

It snowballed rapidly. The core idea was so motivating that in just two years it became a national law.

It started out simple enough: just help people. Give them money. Simple.  

Decades later, it is the mess we know today. 

Non-retirees who qualify for benefits are extremely poor and the checks are very low. The application process is laborious, lengthy and usually unsuccessful. The resource limits mean Americans with disabilities are often stuck in a poverty trap, unable to ever save or make enough to provide for themselves.

Before I fell through the looking glass into Special Needs World, I, too, had a vague idea that in America we took care of disabled people. That Social Security offered some sort of soft landing for the vulnerable and unfortunate. 

I had no idea just how wrong I was.

My personal introduction to the Social Security Administration came in the first six months of my babies’ lives. Over the course of that time, I had 16 social workers (yes, 16, I counted) and many of them advised me to look into SSI to see if we qualified. None of them knew what the requirements were. So one day, in between diapers and doctors’ visits and countless sleepless nights, I finally began the lengthy process. It ended up as yet another wild goose chase.

First, you have to understand the incredibly confusing acronyms. The SSI I’m talking about here is Supplemental Security Income. The SSA (Social Security Administration) doles out this money. They also manage the much-more-famous Social Security benefits for retirees and their heirs, called “Old-Age and Survivors Insurance” or “Retirement Insurance Benefit.” This public pension system is what most people mean when they say “social security.”

If that weren’t confusing enough, SSDI (Social Security Disability Insurance) is for workers who become disabled. Disabled children and adults don’t qualify for this if they have never worked in the labor market.

SSI — the program we are talking about here — is paid for out of general tax funds and not the Social Security trust that everyone talks about “running out of money” (though that is debatable).

Applying for SSI starts with a 23-page paper application or you can fill out an online application. Less than half (43.5 percent) of applications for disabled children were approved in 2018 but that’s still a lot better than the just 30.4 percent for adults. 

Mellani Calvin is a friend of mine and executive director of a Portland, Ore., nonprofit that helps some of the hardest-hit folks get their benefits. Even as non-lawyer advocates, ASSIST has had a 78 percent success rate with hundreds of clients over their decade in business — more than twice the national average. 

Calvin says the key to their success is an avalanche of evidence.

“We just paper the case,” she says. “SSA is not used to families or individuals advocating for themselves, (but) because it’s your claim, you get to send anything you want.”

In other words, Calvin helps people get benefits by preparing like she’s going to court. The average ASSIST application, Calvin says, takes about 25 staff hours plus another 10 hours for the client.

She has her clients’ doctors write detailed letters outlining their functional deficits. This can be difficult because it is unpaid work for the clinicians, but she says those are key. Without detailed letters, Calvin argues SSA staffers (or, rather, their contracted agencies, called Disability Determination Services) essentially “guess” from medical records that often don’t include the pertinent information. 

No one from SSA or DDS meets the disabled children before granting or denying benefits. They have a phone call with an overwhelmed caregiver about their financial picture and, at most, ask them to go through yet another doctor’s visit to verify their claim.

SSA’s budget request, however, appears to hint that the agency is aware of its systemic problems. The message to Congress lauds lowering its average decision times from a staggering 605 days in 2017 to an estimated 310 days last year.

The budget request also underscores how costly it is to make people go through the appeals process after a wrongful denial. “Hearings are the most expensive part of the disability process. We must ensure that we make fair, policy-compliant disability decisions supported by the most efficient, modern business processes,” it says. 

The SSA is also gearing up to study the barriers to work for disabled adults and children, as well as the barriers to accessing benefits. Disability advocates have long claimed that SSI keeps recipients stuck in a cycle of poverty and even bars them from getting married.

To give you a ballpark idea, a two-parent household with two kids, one of whom is the SSI recipient, can earn up to $53,904 in wages before their SSI check reaches $0. (See a chart in the middle of this webpage.) That may not sound too bad, but there is another limit that is very clear: the disabled child may not live in a household with more than $2,000 in resources, or $3,000 for a couple.

“There is no tolerance for any amount above the resource limits,” SSA regional spokeswoman Shayla Hagberg wrote in an email to Medical Motherhood. (She notes that several types of assets are not counted as resources but most types of savings, a second car or even a life insurance policy are.)

The $2,000 cap ($3,000 for a couple) was passed in 1984 and enacted in 1989. If those limits had just kept up with inflation, they would be $5,565 and $8,347 today.

My family may have qualified under those inflation-adjusted limits when I first called SSA. But we didn’t qualify under the actual limits. Not even when we were on food stamps and living in a tiny 2-bedroom house worth $40,000 less than our mortgage.  

So it’s surprising and depressing that even with such a low bar for the amount of savings a family can have on the program, more than 1 million U.S. children receive some amount of SSI — that’s 1.4 percent of all Americans under the age of 18. Seventy percent of those qualify because of a mental condition, like autism or ADHD, as opposed to a physical disability. Children make up almost 13 percent of SSI recipients. (source)

Once a parent gets their child’s application through the gauntlet — or perhaps goes through the even-more-laborious appeals process — what do they get? A maximum benefit of $794, or less than $10,000 per year. (Some states supplement this payment. In Oregon, where I live, they are called “Special Need payments.” They aren’t much.)

That is the maximum amount. Payments are lowered the more income parents have. In April 2021, the average monthly payment to families of disabled children was $694.80.

The entire SSA has a mind-boggling $1.2 trillion budget. SSI alone has a $62.7 billion budget, nearly 8 percent of which ($4.8 billion) is spent on administration. 

It’s unclear how much of those SSI payments are for children. But by taking the number of children on SSI here and the average monthly payment here, I get roughly $8.86 billion in annual benefits for these, the poorest and most disabled American children. For comparison, that’s about two-fifths of what the U.S. sends abroad in foreign aid each year.

A simple system, born of compassion. How far Social Security has strayed from that ideal.

Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Yes! Magazine: “Why the Formula Shortage Is Also a Disability Rights Issue”

The baby formula shortage wreaking havoc across the United States is terrifying for any parent who relies on infant formula to feed their child. It’s especially calamitous for babies and children with special health care needs who rely on special prescription formulas that have also been impacted by the supply shortage.

The shortage highlights an ongoing, systemic failure to ensure vulnerable children have secure access to medically necessary, life-supporting products and equipment. Families with healthy infants who had previously never experienced this level of stress over finding a product that should be readily available are now facing a situation that is sadly the status quo for families of children with disabilities.

This shortage—precipitated by a major recall of infant and pediatric formula produced by manufacturer Abbott Nutrition in February—has received major media attention, most of it focused on families who can’t find the over-the-counter Similac baby formula brand. Less attention has been given to the supply crisis in specialty prescription formulas like EleCare and hypoallergenic formulas like Alimentum (both also part of the Abbott recall). These specialized, medically necessary formulas are designed for children with gastrointestinal disabilities who can’t tolerate traditional formula. The shortage of these products affects not only babies, but also children and teens with complex digestive problems and allergies. This includes children fed through a jejunal tube (a feeding tube that bypasses the stomach and feeds the child directly in the small intestine); children with serious allergic conditions, like eosinophilic esophagitis or gastroenteritis; and children with intestinal malformations and malabsorption disorders.

• From CBC in Canada: “Children with disabilities getting inconsistent government support, Alberta auditor general finds”

Alberta families hoping for financial help for their children with disabilities are often at the whim of their caseworker, rather than consistent rules, the province's auditor general has found.

Furthermore, only about one in five caseworkers and supervisors with the Family Support for Children with Disabilities (FSCD) program had completed all mandatory online training. About a third of those who did finish training whizzed through the multi-hour modules in less than five minutes, the auditor's office found from digital data.

The findings could lead to the perception the government is making decisions unfairly, Auditor General Doug Wylie said on Monday.

[…] Wylie's office found plentiful inconsistency within the FSCD program, which paid out $193 million in supports to more than 15,000 families in 2020-21.

FSCD helps families cover the cost of expensive therapies, counselling, clothing and shoes, medications, respite care and other services children need to survive and thrive.

• From The New York Times: “Sabrina’s Parents Love Her. But the Meltdowns Are Too Much.”

In interviews, parents across New York State described the same scenes of fear and helplessness: being attacked by an adolescent child, now bigger and more aggressive than before. The dread that their child might turn on a younger sibling. Their growing helplessness as their child’s self-injuring behavior — relatively common among autistic children — escalates. The emergency room visits when there was nowhere else to go. And their eventual realization that the family home may be the wrong setting for their child.

A father in Brooklyn described his anguish at watching his autistic son smash his head repeatedly against the hardest nearby surface: the wall, the floor, the detachable shower head. A mother in Albany described her daughter’s wild behavior: endless twirling, chewing on walls. Earlier this year, the girl was found in the yard with a broken arm, having either jumped or fallen out of a second-story window.

“One of the glaring weaknesses of the system is there is no real option for families whose children fall into that category,” said Christopher Treiber, an associate executive director at the InterAgency Council of Developmental Disability Agencies.

A half-century ago, many children with autism ended up in notorious state institutions like the Willowbrook State School on Staten Island, where those with developmental disabilities were left untended in filthy wards or strapped to beds.

In the years since these institutions were closed, there has been a clear presumption about what’s best for many children with intellectual or developmental disabilities: They should live at home through childhood, attending special education classes and programs, eventually moving into group homes at some point in adulthood.

And for decades, this policy has kept families intact and provided richer, more connected lives for those with such disabilities. But the presumption can fail a small number of families like the Benedicts.

[…]But gaining admission is a slow and sometimes adversarial process. The government can be reluctant to approve these placements, which can cost more than $300,000 a year — a cost shared by a local school district and other government agencies.

And placements usually happen only after a school district has proved unable to provide an “appropriate” education in a special education classroom. That can take months, even years. In this calculus, a deteriorating home life, like the one experienced by the Benedicts, receives relatively little weight.

• From FOX 61 in Connecticut: “Governor signs children's mental health bills”

[Connecticut] Gov. Ned Lamont signed several bills into law toward the end of the session including a series of bills prioritizing mental health services for children in Connecticut.

“Obviously we thought we had to do more, especially coming after two years of COVID and we’re going to make a difference in these kids’ lives and if we have to do more, we’ll do more," Lamont said.

[…]Lt. Gov. Susan Bysiewicz said the legislation invests $300 million in expanding treatment, making services more affordable, and helping practitioners take on more clients. The bills also call for the hiring of more social workers and therapists and improvements to emergency services for mental health and substance use-related emergency calls.

• From WSAW-TV (Wisconsin): “Families with children who have special needs face additional barriers to finding child care”

[Mom Samantha Brown said:] “I’m having a harder time now with child care with having a child of mental illness issues and being diabetic, he’s Type 1.”

Though her children attend school full-time, she said she has to be nearby and available at a moment’s notice.

“If there’s (sic) problems at the school, I go to the school. If he’s not having a good day... So, I’m mainly home, you know, but (inadequate) child care has definitely put a damper on working more.”

This single mom works on the weekends at an assisted living facility, in addition to receiving some government benefits. She is going to school part-time during the week to get a degree in substance use disorder counseling and human resources. She said she knows those skills are needed in the community and the hope is she will be able to provide more income for her family too. This allows her to remain flexible with Emercyn’s needs, but it does not alleviate her child care problems.

[…]According to the latest data from February from the Wisconsin Department of Children and Families, 75% of the zip codes in Lincoln County are considered child care deserts, including Brown’s hometown: Merrill. Brown said they do have some resources through the county, which are helpful and they qualify for respite care, but it is up to her to find that respite care.

[…]Several parents told 7 Investigates that they struggle with finding care for their child with special needs. Childcaring, the child care resource and referral agency for the central Wisconsin region also echoed the additional challenge families in those situations face.