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Medical Motherhood’s news round up

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

• From Jefferson Public Radio (Oregon): “New play space in Eureka offers social recreation tailored for kids with disabilities”

Play Street, which opened last week, is open to all children but focused on those with disabilities.

The nonprofit Play Street launched after President and Executive Director Shannon Townsend-Bettis and a group of other moms realized there wasn’t a space designed for children like theirs.

[…]The space features a calming environment for children with sensory needs, including dimmer lights and a vibroacoustic ball pit with soothing vibrations.[…]

• From NPR: “Deloitte-run systems denied Medicaid to disabled people. New laws could make it worse”

[…]“I honestly thought I was going to die,” [Michigander Marie] Noon said.

So it was a shock when Michigan denied her application for Medicaid benefits last year after she lost private insurance. Worse yet, it came down to an IT error, according to an attorney who helped Noon overturn the denial.

[…]Deloitte, a multibillion-dollar global consulting firm, has operated Michigan's Medicaid eligibility system under contracts worth roughly $768 million since 2006, according to contracts reviewed by KFF Health News. Nationwide, Deloitte dominates this important slice of government business: At least 25 states [including Oregon] have awarded the company contracts to build or run computer systems that control access to safety net benefits such as Medicaid.

[…]Many coverage restrictions in the new federal law [2025’s One Big Beautiful Bill Act] don't apply to seniors, children, or people who are disabled, such as Noon. Nonetheless, the law's demands on state agencies and the computer systems they oversee will disrupt benefits, advocates for Medicaid enrollees and other healthcare experts said in interviews.[…]

• From Tampa Bay 28: “‘I’m not giving up’: Florida mom battles Medicaid denials for special needs son”

[… Florida mom Kelli] Stuart tells [reporter Michael] Paluska when [her adopted son] Sawyer was approved for Medicaid, it was a blessing. But the red tape and hoops she’s had to jump through consume her.

“It took us about five years to get him on Medicaid. Medicaid really has been such a gift for him and our family. It’s just opened up doors to services, and I mean, you know, he, he’s not potty trained, so we get diapers and wipes, and so in a lot of ways Medicaid has been wonderful, but Medicaid, being the parent of a child on Medicaid, is a full-time job.”[…]

• From News 5 Cleveland: “‘I need to live’: Ohio mom fights state over disabled son’s stair lift”

A mother should never have to choose between her kids, especially in a scenario that potentially poses a safety risk, but Kasey Sheets says the county and state are forcing her to do so.

[…]”The summer of 24, like a tornado touched down right by us.[…”] As Sheets described it, she used every ounce of her “mom strength” and carried Finn down the stairs to the basement.

[…]The device she’s had her eye on would cost about $8,000. Sheets told me that money is already in an account in their name, but it’s about getting permission to utilize it for basement accessibility.[…]

• From Arizona Mirror: “After the Hacienda Healthcare rape, Arizona built a group home watchdog. Now it’s being defunded.”

An independent oversight program created in response to a horrific rape, meant to protect some of Arizona’s most vulnerable people, will cease at the end of this year unless it finds a new funding source, a casualty of Arizona’s newest bipartisan state budget.

[…]COMIT’s $1.2 million annual budget is a tiny fraction of the $18.3 billion state budget passed in June, which included cuts to many state departments and programs to pay for the $1.4 billion in Trump tax cuts that both Republicans and [Gov. Katie] Hobbs celebrated.[…]

• From Florida Bulldog: “Trump DOJ Memo threatens decades of disability rights protections, tests key Florida rights case”

[…]a June 18 memorandum opinion from the Justice Department’s Office of Legal Counsel (OLC), requested by a young lawyer in the White House Counsel’s office named Samuel Adkisson four months earlier, challenges the foundational principle of disability civil rights[….]

The memo strikes at the ADA’s central guarantee, repeatedly upheld by courts across the country, that people with disabilities, including medically fragile children in Florida, cannot be warehoused in institutions simply because states resist providing care at home or in the community. If embraced by higher ups at Justice, it also threatens two watershed court rulings that found Florida violated the ADA through the unjustified segregation and institutionalization of people with disabilities, a form of discrimination.

[…]Soon there may be no adversary in U.S. v. Florida. And if that happens, and the full appellate court and its conservative majority undo the findings of its own panel and Judge Middlebrooks, the consequences for thousands of disabled individuals and their families would likely be disastrous.[…]

• From Arkansas Democrat-Gazette: “They deserve better education: Arkansas failing its disabled kids (Opinion)”

I  taught special education in Arkansas for three years. I loved my students. They were the reason I came to work every morning. But I ultimately made the heartbreaking decision to leave because I could no longer watch a system fail the very children it was created to protect.

Let me be clear. I support inclusion. When done correctly, inclusion gives students with disabilities the opportunity to learn alongside their peers while still receiving the specialized instruction they need to succeed.

The problem is that putting students in a general education classroom has replaced giving them the specialized services they need.[…]

• From WAMC: “NY law would create voluntary disability registry in wake of child's death”

A new bill introduced in the New York State Assembly would create a voluntary, statewide database for children and adults with mental and developmental disabilities.[…]

• From The Fiji Times: “Barriers to inclusion – Study exposes gaps in support for children with disabilities”

DESPITE Fiji’s commitments under international human rights conventions, children with disabilities continue to face significant barriers in accessing education, healthcare and other essential support systems.

[…]One of the major concerns identified was the continued difficulty children with disabilities face in accessing inclusive education.

While there were positive examples of institutions making improvements, Ms Yuen said more work was needed to ensure schools were safe, accessible and inclusive.

“We want children with disabilities to go to school, but we need to look at how safe, how accessible and how inclusive the teaching environment is,” she said.

[…]The study included 24 priority recommendations covering the seven thematic areas. Among the recommendations was the need to strengthen disability rights awareness across government and communities.[…]

Medical Motherhood brings you independent, ad-free news and information each Sunday for raising disabled and neurodivergent children.

Free subscribers help this work reach more families. Paid subscribers make it sustainable. Get the newsletter in your inbox, give a gift subscription or become a paid supporter to help keep this resource available to everyone.

Not ready for a subscription but like what you read here? You can also buy me a coffee.

Follow Medical Motherhood on Facebook, Bluesky, X, TikTok, Instagram or Pinterest. Visit the Medical Motherhood merchandise store.

I have definitely been in this situation. Have you? My favorite thing in a big gathering of disabled children is watching families share tube food and lend out syringes just as off-handedly as they would snacks or silverware. It takes a village after all — and for our kids, a very unique village.

Which brings me to my next announcement. If you are in the Portland area, Little Lobbyists Oregon is hosting a kid-friendly community advocacy training on Thursday, Aug. 13 at the McMenamins Kennedy School Theater.

We have reserved this cozy theater lined with comfortable couches and are providing lunch and an optional free movie afterwards. This will be a fun, informative and joyful way to prepare for what’s coming in 2027.

If you read this newsletter, you know that there’s a lot of scary news out there: from declining Medicaid funding, to changes to special education and threats to the services disabled people need to live at home.

But the good news is that ordinary people like you and me organized to create those programs in the first place, so all it takes is our community coming together again. Bonus: we might even be able to design a better, more functional system!

Don’t wait until it’s too late. The time to change things for the better is now, before our children lose their rights and services.

Register here: Little Lobbyists Oregon Advocacy Training Lenore Eklund, the cartoonist, and I will be there with our kids — along with many other advocates — and we will all get to play the Whose Feeding Pump Is It Anyway? game together!

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, who now has her own Substack!

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Medical Motherhood’s news round up

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

In case you missed my July 5 announcement, I took last Sunday off as part of the two weeks every year that I take a vacation from producing this newsletter. The rest of the news world, however, did not take a week off, so there are even more stories than usual! I have compressed the amount of excerpts in an effort to get the maximum number of worthy and relevant links in. Enjoy!

• From CharityToday (United Kingdom): “Summer digital festival for disabled children returns”

THIS August, disabled or seriously ill children and their families can learn to code, animate and create their way through summer with national disability charity Family Fund’s Discover Digital summer festival.

Offering fun and fully accessible creative workshops particularly designed for disabled and seriously ill children, the festival can be joined live or, for the first time this year, on-demand, in their own time and at their own pace.[…]

• From The 19th: “The nation’s largest school system is expanding special education for its youngest learners”

[…]The nation’s largest school system is investing $67.5 million in special education as families across the country fear the needs of their children with disabilities will go unmet amid the federal Department of Education’s continued dismantling.

In New York City, young learners will be able to participate in three programs designed specifically for students with autism that were previously only available to K-12 students.[…]

• From News from the States: “400 sick, disabled kids get second reprieve in Tennessee plans to report them to immigration office”

A Nashville judge has extended an order preventing Tennessee Department of Health officials from sharing identifying information about 400 sick and disabled kids with a state agency that collaborates with federal immigration enforcement.

It is the second reprieve for children enrolled in Children’s Special Services, a safety net program for sick children who need ongoing and — in some instances — life-sustaining care since last month, when the health department sent out notices spelling out immigration status reporting was a condition of continued care.[…]

• From GearJunkie: “He Built a Hiking Cart for His Disabled Daughter. Now It’s Keeping Families on the Trail”

[…]Wilde would eventually name his concept the Cascade Tandem Hiking Cart. It’s sort of like a simplified, one-wheeled rickshaw. At the front is the Frame and Harness, which ensures that only 25% of the rider/cart’s weight is on the carrier’s back. This harness includes trekking poles for forward motion, but they also double as stationary legs when the wearer needs to detach and rest.[…]

• From CPR News (Colorado): “Mothers caring for children with developmental disabilities worry as ‘unfair’ cuts to Medicaid take effect”

With the budget in crisis, state lawmakers capped the number of hours a week a person providing care to someone else, often a family member, can be reimbursed.

A series of phased in cuts started taking effect this month and impacted families expressed deep apprehension about what the coming months will bring.[…]

• From NC Newsline: “NC’s childcare crisis disproportionately affects disabled kids. A lawmaker says it’s time for change”

[…]Last week, the legislature passed a long-awaited state budget that included two key goals of the I/DD caucus. It spends $21.3 million per year for higher pay for direct-support professionals who provide in-home services and health care to people with disabilities. It also allocates $70.8 million to increase Medicaid funding for programs that offer community and in-home resources for disabled people who might otherwise be institutionalized.

[Zack] Hawkins, [a leader in the state legislature’s I/DD caucus] said that in the next legislative session, he hopes to tackle the challenges families with I/DD kids face in finding and maintaining affordable childcare.[…]

• From The Las Vegas Review-Journal: “Las Vegas Down syndrome self-advocacy program to expand nationwide”

[…]Gudiel’s Empower program focuses on transitional readiness to address what she described as lack of support for individuals with Down syndrome when they are progressing from their teenage years into adulthood.[…]

• From DisabilityScoop: “White House Wants To Make It Harder For People With Disabilities To Sue Federal Agencies”

[…]In court filings, attorneys with the Department of Justice now claim that people with disabilities don’t have the right to sue federal agencies under Section 504.

[…]Disability advocates say this argument is out of step with Supreme Court precedent and that the federal government itself has frequently made the opposite argument in previous court cases.[…]

• From KFDX: “Texas charity helps families of children with disabilities”

[…]Masonic Children and Family Services of Texas provides financial assistance to families who may not qualify for other forms of aid but still struggle to afford therapies, medical equipment and other essential services.

[…]Awad said the assistance from Masonic Children and Family Services of Texas has made a significant difference for her family and believes the organization has done more to help them than the state has. She said she will continue advocating for better care and resources for children with disabilities.[…]

• From 12 News: “Arizona students with disabilities fuel rapid growth in billion-dollar ESA voucher program”

A 12News investigation found the number of special education students receiving Empowerment Scholarship Accounts has tripled in four years, with several families receiving more than $30,000 annually.

Arizona’s Empowerment Scholarship Account program was created to give children with disabilities access to educational services that public schools could not provide.[…]

• From The New York Times: “An Autism Breakthrough, or an Illusion? The Fight Over Assisted Spelling”

[…]Proponents of assisted spelling say it has improved the lives of thousands of nonspeakers, some of whom have used it to write memoirs or obtain graduate degrees. Yet despite the potentially profound implications of these communication methods, there has been remarkably little scientific research evaluating them. Citing the risk that the person holding the letter board may influence the messages, and a history of such abuses with prior assisted communication methods, many medical groups have cautioned against them.

All of this has led to a growing debate dividing autistic people, families and the scientific community.[…]

• From the Associated Press via PBS News: “Trump's actions signal a move toward institutionalizing people with disabilities, advocates warn”

[…]Last month, the Department of Education announced it would shift oversight of special education to the Department of Health and Human Services, led by Robert F. Kennedy Jr., whose comments on the limits of disabilities such as autism have drawn sharp rebukes from advocates and lawmakers.

Meanwhile, after a White House push to police homelessness, the Department of Justice released guidance that lowered the barrier to institutionalizing any person with a disability.

Taken together, the actions signal a worrying return to a reality where people with disabilities are pushed to the margins of society, advocates said.[…]

Medical Motherhood brings you independent, ad-free news and information each Sunday for raising disabled and neurodivergent children.

Free subscribers help this work reach more families. Paid subscribers make it sustainable. Get the newsletter in your inbox, give a gift subscription or become a paid supporter to help keep this resource available to everyone.

Not ready for a subscription but like what you read here? You can also buy me a coffee.

Follow Medical Motherhood on Facebook, Bluesky, X, TikTok, Instagram or Pinterest. Visit the Medical Motherhood merchandise store.

Happy Disability Pride Month!

Disability Pride Month is observed in the U.S. every July, tied to the anniversary of the Americans with Disabilities Act, which President George H. W. Bush signed on July 26, 1990.

The ADA was a landmark U.S. civil rights law, prohibiting disability discrimination in public life, including employment, schools, transportation, government services, telecommunications, and public accommodations. The ADA National Network describes the law’s purpose as making sure disabled people have “the same rights and opportunities as everyone else.”

The “pride” part matters. Disability Pride Month is not just an awareness month or a celebration of the ADA as a law. It is also about disability identity, culture, visibility, community power, and rejecting shame or pity.

The American Association of People with Disabilities frames it as a time to commemorate the disability community’s strength and solidarity, while also recognizing that disability pride can mean different things to different people, including joy, rage, grief, resistance, and mutual support. (Source)

The Centers for Disease Control notes that more than 1 in 4 U.S. adults have some type of disability, so this is not a niche issue.

Here are a few options for celebrating Disability Pride Month and getting involved in defending disability rights:

• Attend a webinar on July 8 from legal experts explaining what the recent U.S. Department of Justice Olmstead memo means — and doesn’t mean — for community living.

• Check out The Arc’s list of 2026 Disability Pride Month activities by state.

• Buy your own disability pride flags through a retailer like Flags for Good, which donates to good causes.

  ---

  Editor’s note: I take two weeks off of this newsletter every year and next week is one of them! There will be no July 12 edition. See you back here July 19.

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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 ABC News: “Trump’s actions signal a move toward institutionalizing people with disabilities, advocates warn”

For decades, disabled people have fought for their rights to go to school and live alongside peers without disabilities — rights that some fear could be losing ground under the Trump administration.

[…]The Trump administration’s steps fit a worldview in which the government has no obligation to support people with disabilities, said Claudia Center, legal director at Disability Rights Education and Defense Fund.[…]

• From the Kitsap Sun (Washington state): “Why fam­il­ies are wor­ried about the erosion of dis­ab­il­ity rights”

[…]In recent months, dis­cus­sions sur­round­ing home and com­munity-based ser­vices have focused on costs. These ser­vices have been framed as a fin­an­cial bur­den. This is an area where pub­lic per­cep­tion and real­ity don’t align. The most import­ant con­sid­er­a­tion should always be what is most humane and offers the highest qual­ity of life. But if the goal is also to reduce costs, research has shown that insti­tu­tional care is the more expens­ive model.[…]

• From National Partnership for Woman and Families: “Americans’ Unpaid Caregiving is Worth More Than $1 Trillion Each Year”

[…]Just how important is caregiving for our economy? Our analysis of new data from the 2025 American Time Use Survey finds that Americans spend an average of 234 hours a year caring for and helping family, friends and loved ones. If Americans’ unpaid care work was compensated at the rate of our professional care workforce, it would be worth more than $1.1 trillion a year – equivalent to 3.6 percent of our GDP or, outrageously, Elon Musk’s net worth.

Despite the enormous impact of this work, caregiving is undersupported and undervalued, primarily because the large majority of care work – both paid and unpaid – is done by women. […]

• From WRDW: “Georgia Medicaid coverage cuts could leave special-needs kids without therapy”

Georgia lawmakers are criticizing CareSource over reimbursement cuts that are leading clinics across the state to stop accepting patients who use the insurer, one of three companies that manage Medicaid coverage in Georgia.

Three-year-old Joanna Lopez is among the children affected. She has a neurological disorder called alternating hemiplegia of childhood, which her mother, Raquel Lopez, said causes episodes of paralysis.

[…]In the coming weeks, Joanna will no longer have access to services at TOTS.

The change stems from a letter sent to clinics from CareSource, which manages Medicaid coverage for children like Joanna. The company told clinics it would cut reimbursement rates by 20%. […]

• From News-Graphic (Kentucky): “Mother with disabled son advocates against Medicaid cuts at Capitol”

Brittany True, 28, of Georgetown, travelled to Frankfort with her family Wednesday, June 24, to advocate against proposed Medicaid reimbursement cuts, which would directly impact the treatments her disabled son is able to receive, in front of the Kentucky Medicaid Oversight and Advisory Board.

[…]“Are (care providers) going to not be able to bill Medicaid anymore?” she said. “I’m in lessons and therapy literally five days a week, so, I mean, at what point do I have to pick which therapy is most important to him? … I will do whatever I have to do to keep him in that therapy, but I know there’s people out there that can’t, and that’s what’s very scary.”[…]

• From The Tyee (Canada): “Is BC’s New Disability Funding Putting Some Kids at Risk?”

[…]The province is investing $475 million in new funding to provide more families with access to services and supports for their kids with disabilities, many for the first time.

“Families have told us the current system isn’t working for many children. Too many receive no support at all, while others struggle to navigate a system that doesn’t reflect their child’s needs,” reads an emailed statement Children and Family Development Minister Jodie Wickens sent to The Tyee.

“When children and youth can’t access the supports they need, it can have serious impacts, and that is the reality many families are facing today.”[…]

• From Daily Tribune (Philippines): “Only 8% disabled kids enter schools”

More than 90 percent of Filipino children with disabilities remain outside the public school system despite a law mandating inclusive education, according to a new study that warned of persistent shortages in teachers, funding and support services.

A policy brief released by the Second Congressional Commission on Education (EDCOM 2) found that only 381,089 learners with disabilities were enrolled in public schools in the 2024-2025 school year — roughly 8 percent of the country’s estimated 5.1 million school-age children with disabilities.[…]

• From E-Tagata (New Zealand): “The incredible example Māori set other Indigenous peoples”

[…]I never planned to move to Aotearoa [the Maori word for New Zealand].

But I was passionate about land-based learning for Indigenous disabled learners, and I knew Aotearoa was the place to do it.

[…]I continue to learn from my daughter and live in gratitude for how she teaches me what it means to be authentically oneself, free, rooted in relationships, and truly self-determined.

I still hear echoes in others’ stories today of her beginnings. I hear how disabled people and their families are treated like burdens, presumed to be “taking away” from others.

These stories break my heart. They make me more determined in my work to uplift Indigenous peoples lived experience of disability and autism, and to lead with these stories to create change.[…]

• From Forbes: “Meet The Disabled Leaders Redefining Their Industries This Disability Pride Month”

[…]The leaders below are among countless others carrying that work forward right now, across media, fashion, policy, talent representation, literacy and the creator economy. They are ensuring the movement continues, expands, and evolves, and that the legacy of those who came before us is honored.

It is worth noting that this year’s anniversary arrives at a moment when the legal architecture protecting Disabled people is under sustained pressure.[…]

Medical Motherhood brings you independent, ad-free news and information each Sunday for raising disabled and neurodivergent children.

Free subscribers help this work reach more families. Paid subscribers make it sustainable. Get the newsletter in your inbox, give a gift subscription or become a paid supporter to help keep this resource available to everyone.

Not ready for a subscription but like what you read here? You can also buy me a coffee.

Follow Medical Motherhood on Facebook, Bluesky, X, TikTok, Instagram or Pinterest. Visit the Medical Motherhood merchandise store.

Share

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: “DOJ memo stokes fear among disability advocates of a return to institutionalization”

The Justice Department released a memo this week that quietly calls into question decades of civil rights protections for Americans with disabilities and stirred fear and anger among advocates and families.

The memo, an opinion from the Office of Legal Counsel, argues that states do not have to provide in-home or community-based care to people with disabilities who need support. These services allow many disabled Americans to continue to live, learn and work at home or in their own communities, among family and friends.

“It is now the position of the United States government that people with disabilities don’t have a right to be part of their communities,” says Alison Barkoff, a health law and policy professor at George Washington University who led disability law and policy efforts during both the Obama and Biden administrations. “I can’t overstate how significant this change in position is.” […]

• From DisabilityScoop: “The Ed Department Is Outsourcing Special Education. Here’s What That Means For Students With Disabilities”

The U.S. Department of Education’s decision to transfer its special education and civil rights offices is likely to cause confusion and disarray, advocates warn, as a key Senate panel considers a vote to block the move.

The Education Department said last week that many responsibilities of its Office of Special Education and Rehabilitative Services, or OSERS, will go to the Department of Health and Human Services while much of its Office for Civil Rights, or OCR, which handles complaints of disability discrimination in schools, will shift to the Department of Justice.

The plans, which have been in the works for more than year, are part of the Trump administration’s effort to close the Education Department. However, without approval from Congress, the Education Department is using what are known as “interagency agreements” or IAAs to offload management of major functions while retaining statutory responsibilities. […]

• From News From the States: “Judge issues restraining order in doctors’ challenge to TN plan to report disabled immigrant kids”

A Nashville judge on Wednesday swiftly issued a temporary restraining order preventing the Tennessee Department of Health from turning over the names of about 400 disabled and critically ill kids to a state immigration agency that cooperates with federal immigration enforcement.

Davidson County Chancellor Patricia Head Moskal issued the order within hours of the filing of a lawsuit by three Tennessee physicians. The doctors are challenging the department’s notice to families that their child’s information will be shared with the Tennessee Centralized Immigration Enforcement Division after June 30 as a condition of of continued enrollment in a public safety-net healthcare program.[…]

• From Governing: “School Districts Are Struggling to Keep Up With Surging Special Education Needs”

[…]Since 2015, local schools have lost tens of thousands of students. But over the same period, the number of students with disabilities has increased significantly. Special education students now make up almost 20 percent of students countywide – significantly more than a decade ago.
If the trends continue at the same pace as the last decade, students with disabilities would make up 25 percent of the student population by 2035.

[…]For many districts, the crisis is felt most acutely in their budgets. The fiscal crunch manifests in a couple of different ways.
For one, as the total number of students declines, districts are given less funding. Then, with less money coming in, the number of kids with disabilities they serve has increased. That’s a problem, because the cost of special education services is steep.

Cajon Valley, for example, spends nearly three times as much to educate a student with disabilities compared to a student who doesn’t receive special education services.[…]

• From Kentucky Public Radio: “Families, patients of disabled Kentuckians demand renewed clinic funding at hearing”

[…]Kentuckians with intellectual and developmental disabilities and their caregivers crowded Frankfort committee rooms Wednesday as they urged lawmakers to reverse massive funding cuts to the Lee Speciality Clinic in Louisville.

The clinic, which provides comprehensive medical, dental and behavioral care to the highly vulnerable population, is set to sharply curtail its outpatient care in July, eliminating services for more than 1,000 disabled Kentuckians.

Parents, family members and those with disabilities overflowed the Medicaid Oversight and Advisory Board meeting to beg lawmakers and Democratic Gov. Andy Beshear’s administration to not treat them as a “pawn in this political game between the executive and the legislature.”[…]

• From WLWT: “Ohio Gov. DeWine signs Joshua Alert bill for missing children with autism”

An alert system dedicated to finding missing children with autism officially became law in Ohio on Thursday.

Ohio Gov. Mike DeWine said he signed the Joshua Alert bill into law, clarifying the statewide emergency alert system in cases of missing autistic or developmentally disabled children.

The Joshua Alert bill, named after a young boy with autism who was found dead in 2024, easily passed the Ohio Statehouse this year. […]

• From The Minnesota Star-Tribune: “Trust in medical research has tanked. Gillette might have the answer.”

Gillette Children’s in St. Paul is trying to boost public confidence in medical research by doing something long considered taboo in U.S. health care: paying patients and their families to get involved.

The hospital for disabled children and adults is one of the first in the U.S. to hire “lived experience” partners who help researchers decide what to study when it comes to experimental treatments and how to evaluate their success or failure. The approach gained national attention this month when it was featured in Pediatrics, an influential scientific journal, as an example for others to follow.

[…]“The bias of academic research is, ‘What is going to get me funded? What is going to get me tenure?’ Not, ‘What is going to improve the health and quality-of-life outcomes of the person living with this condition?’” [said Rhonda Cady, leader of Gillette’s health services research.]

Program leaders said embracing the insights of patients and families could help restore public trust in research that declined following the COVID-19 pandemic and disagreements over everything from vaccines to masks to stay-at-home orders.[…]

• From GoErie.com (Pennsylvania): “Pa. has high special education needs. What federal shift could mean”

Special education oversight is shifting out of the U.S. Department of Education, federal officials have announced, a move that many disability advocates decried as potentially fragmenting critical programs.

The change could have particular effects in Pennsylvania, which has one of the nation’s highest shares of students with disabilities.[…]

• From The Guardian: “‘Above all, there is love’: single mothers caring for disabled children – in pictures”

“Defying the Myth” is a deeply personal project that has evolved over more than a decade. Award-winning London based photographer Carol Allen-Storey chronicles the untold stories of single mothers who create safe and enduring worlds for their progeny living with severe disabilities. In this image we see Annalisa and Maria share an intimate moment at home. Defying the Myth by Carol Allen-Storey will be published in July 2026 by GOST.

Guardian head of photography Fiona Shields[…] says: ‘When Carol invited me to write a foreword for the book, I thought I would be commenting on the quality and purpose of her photography project, shedding light on disadvantaged families living with a child with disabilities and all the harsh and bleak aspects of that daily struggle. That is all true, but the real surprise comes from the power of the work as a collaboration, the creativity that a shared mission has unlocked for everyone. There is poetry, art, photography and above all there is love’[…]

Medical Motherhood brings you independent, ad-free news and information each Sunday for raising disabled and neurodivergent children.

Free subscribers help this work reach more families. Paid subscribers make it sustainable. Get the newsletter in your inbox, give a gift subscription or become a paid supporter to help keep this resource available to everyone.

Not ready for a subscription but like what you read here? You can also buy me a coffee.

Follow Medical Motherhood on Facebook, Bluesky, X, TikTok, Instagram or Pinterest. Visit the Medical Motherhood merchandise store.

Disability parenthood is interesting because the “default parent” isn’t always fixed. Sometimes it shifts with the seasons of your child’s life.

In the early years, I was the default parent. My body made milk. My brain thrived on keeping track of a thousand moving parts: therapies, medications, appointments, developmental leaps, new challenges.

But now our children are teenagers, and I find myself watching that role quietly cross-fade to my husband.

He’s the one who can safely lift our wheelchair-using son. He’s the one whose mind is comforted, rather than exhausted, by routines that repeat day after day. While I excelled at adapting to constant change, he excels at steadfastness.

This Father’s Day, I’m thinking about all the dads who step into whatever role their children need, even when it’s hard, even when it’s invisible. The fathers whose strength is physical, emotional, practical, or simply showing up again and again.

I’m grateful for my children’s father. And I’m grateful for all the dads doing right by their disabled kids.

Happy Father’s Day, medical dads.

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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: “States aren't required to provide community-based care for people with disabilities, new DOJ opinion claims”

The Justice Department released a new legal opinion Thursday that civil rights experts said represents a significant attack against people with mental, physical and intellectual disabilities who receive state-funded services.

The Office of Legal Counsel opinion said states are not actually required by law to integrate mentally disabled patients with their peers by providing community or home-based care, a finding experts say runs counter to long-standing legal precedent and would lead to greater rates of institutionalizing people with disabilities.[…]

• From WRAL News: “Families of kids with disabilities warn Education Department changes could break a flawed system”

[…]Under the changes announced Tuesday, the Department of Justice will take over civil rights enforcement in schools, and the Department of Health and Human Services will oversee special education. The moves help fulfill Trump’s campaign promise to dismantle the Education Department. Linda McMahon, the education secretary, pitched the changes as a way to get more help to families of kids with disabilities.

Advocates said special education doesn’t belong in a health department, which usually treats disabilities as conditions to manage, instead of differences in how children learn. The top Republican on the Senate education committee agreed, saying he’d pursue legislation to keep special education out of Health and Human Services.[…]

• From KFF Health News: “Final Rules for Medicaid Work Requirements Are Out. Here’s What You Need To Know.”

[…]Children and pregnant people, as well as individuals with disabilities who receive Social Security payments — all groups that already qualify for Medicaid — won’t be subject to the rules. Nor will people determined to be “medically frail,” or too sick to work.

People subject to the work rules are “crowding out” people in the Medicaid program who are “truly in need,” CMS Administrator Mehmet Oz claimed during a June 1 press call. “Work requirements are going to turn this around, we hope.”[…]

• From Spectrum News: “New York families plea for state help to care for medically fragile children”

A proposal that would financially assist parents caring for medically fragile children failed to pass the New York state Legislature this session.

It comes at a time when the state of New York like much of the nation is dealing with a nursing shortage.

“I cannot stress enough,” said Linda Molina, co-founder of the Voices for the Medically Fragile of New York. “This is not just for my family; it is for all the families that are behind us here.”[…]

• From Tennessee Lookout: “Congressman urges Gov. Bill Lee to revoke directive to report immigration status of sick kids”

Tennessee U.S. Rep. Steve Cohen on Wednesday urged Gov. Bill Lee to revoke a state directive that requires the reporting of approximately 400 sick or disabled children enrolled in a public health program to a state immigration enforcement division.

In a letter to Lee, Cohen called the directive “morally repulsive” and “inhumane.”

“As you wind down your term of Governor, consider your Christian background as you implement policies that will define your legacy,” wrote Cohen, a Democrat, citing Biblical passages. Lee, a Republican, is in the last year of his second term in office.[…]

• From 5 NBC DFW: “The private school choice boom leaves behind many kids in public school”

[…]Today, nine states have taxpayer-funded scholarships to help students with special needs attend private school or learn at home.

But leaving the public school system is risky for many of these students, and special education advocates have long warned against it. Private schools aren’t legally required to admit students with special needs. Contreras was surprised to learn private schools also aren’t obligated to offer services to help kids with disabilities, as public schools are.

Despite decades of research on school choice, academic scholarship hasn’t kept pace with states targeting vouchers to students with disabilities. How those students are faring academically in traditional private schools is unknown.[…]

• From Fox SA (Texas): “San Antonio mother fights to restore her disabled son’s cancelled Social Security checks”

“I will fight until I have no fight in me left whatsoever,” [medical mom La Marlo Kwaja] declared. “I will never give up on that young man. I will never give up on Michael Blake never in life.”

The Problem Solver reached out to the Social Security Administration to get answers.

We wanted to know why the SSI checks that were already approved were cut off, and why paternity was questioned after she’d already received years of Child Support.

Because of privacy concerns, we never got an explanation.

• From People: “Wheelchair User and Ballet Teacher Says Learning to Pirouette Can Be 'as Emotional as It is Terrifying' for Disabled Dancers (Exclusive)”

[…]“The collaboration with The Royal Ballet School, alongside the fact that our sessions sold out within minutes, really highlights both the demand for inclusive, professional-level dance and how eager disabled dancers are to be welcomed into these spaces,” she says.

For years, she says she has heard from dancers who were rejected from traditional ballet classes despite wanting the same opportunities to learn and improve as their peers.

“What we see in moments like this is how much joy, freedom and artistry can emerge when those barriers are removed and dancers are genuinely given the opportunity to participate,” she says.

• From The Washington Post (Opinion): “After my sister died, I came to understand what suffering is for”

[…]Suffering is part of life. But suffering has to be connected to some purpose, or else it is just a way of showing pride in how much you can endure. Families with a disabled child are often encouraged to embrace the challenges they face but given no idea of what the suffering is for.

[…]Thinking about heaven helped me make sense of my family’s experience and the purpose of the sacrifices we made for my sister.[…]

Medical Motherhood brings you independent, ad-free news and information each Sunday for raising disabled and neurodivergent children.

Free subscribers help this work reach more families. Paid subscribers make it sustainable. Get the newsletter in your inbox, give a gift subscription or become a paid supporter to help keep this resource available to everyone.

Not ready for a subscription but like what you read here? You can also buy me a coffee.

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This month’s Where is the Manual for This?! comic takes on a familiar experience for many disabled people and their families: the provider who talks around the disabled person instead of to them. It can happen in doctor’s offices, therapy rooms, schools and service meetings — a question is directed to the parent or caregiver while the disabled person sits right there, fully able to understand and answer for themselves.

Providers should presume competence in all circumstances, but especially when clearly shown that the person can answer for themselves.

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, who now has her own Substack!

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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 Changes Will Push People With Disabilities Off Program, Advocates Warn”

[…]The Centers for Medicare and Medicaid Services issued an interim final rule this week spelling out standards for Medicaid work requirements, which most states must implement by the start of next year.

The so-called “community engagement” requirements stipulate that many Medicaid beneficiaries must prove that they are working, volunteering or going to school at least 80 hours per month in order to qualify for coverage. The new mandate was part of a sweeping law approved by Congress last summer that included nearly $1 trillion in Medicaid cuts.

[…]However, the rule is setting off alarm bells for disability advocates who warn that the parameters put forth by CMS for people with disabilities to claim an exemption are far more limited than the definition of disability under the Americans with Disabilities Act.

“Despite Congress’ promises that people with disabilities will be exempt from these requirements, not all people with disabilities are exempt. Disabled people will lose access to Medicaid,” said Maria Town, president and CEO of the American Association of People with Disabilities.[…]

• From Tennessee Lookout: “Tennessee to report disabled immigrant kids getting public healthcare to ICE, advocates say”

Scores of low-income immigrant children living with critical illnesses could soon lose access to life-sustaining medical care after Tennessee officials directed public health departments to verify their immigration status and report to the federal government, according to the Tennessee Justice Center.

The Tennessee Department of Health is targeting Children’s Special Services, a last-resort public health insurance program for kids with disabilities and life-threatening illnesses, such as cancer, spina bifida and terminal diseases. […]

• From Fox 45 News: “Maryland ‘fudged the numbers’ on disability budget cuts, lawmaker says”

When Maryland lawmakers slashed $126 million from the state’s disability budget earlier this year, they justified the move with a dire warning: the state’s waiver program for home and community-based care was at risk of federal termination unless the budget was reined in.

But advocates, and a state lawmaker who proposed a last-minute amendment to reverse the cuts, now argue that the state’s fiscal alarm was manufactured.

[…]Federal officials appear to be contradicting the state’s narrative. The Centers for Medicare and Medicaid Services (CMS) told Spotlight on Maryland it has never issued any notice indicating that Maryland’s waiver was at risk of termination due to cost-neutrality concerns.[…]

• From Dayton Daily News: “What happens when a child with disabilities gets taller, stronger, and the family needs support?”

[…]The struggles to get home health care for her son have left Rodriguez frustrated. She works with home health agencies to get aides to help since Miguel needs 24/7 care. He has also been diagnosed with cerebral palsy and developmental delays in addition to the epilepsy.

“I have been working on fundraising to get a wheelchair accessible van,” Rodriguez said. “I have almost dropped Miguel a few times because he’s heavy and it’s awkward to lift him in and out of the car. I can’t continue to do this because I’m afraid I will hurt him or myself.”[…]

• From Irish Times: “‘It’s relentless’: Mother caring for disabled twin children says respite ‘critical’ for carers”

A woman who is caring for both of her 12-year-old twins has said she would describe her life at times as “not living but just existing”.

[…Catherine] Rossiter shared her situation as Family Carers Ireland warned that family carers are being pushed deeper into financial hardship and social isolation.

The charity’s State of Caring 2026 report revealed 71 per cent are finding it difficult to make ends meet, while almost half experience severe loneliness.[…]

• From NPR via Georgia Public Radio: “Screens are leaving schools fast, though some students with disabilities rely on them”

[…]Much of the pivot away from screens in schools has come from parents who are concerned screen use is getting in the way of their children’s learning — an argument Heather Martin hears in her own community in Concord, 30 miles northeast of San Francisco. She shares some of those concerns, but says, “Never once in the conversation has there been a discussion, except for me bringing it up with the other parents, about kids with disabilities.”

Advocates worry those students are also being left out of the national conversation.

[…]"A completely screen-free environment feels like it's throwing the baby out with the bathwater," [mom Heather Martin] says. "It's not looking at 'screen free' versus 'accessibility free.' And for some kids, the screen is their accessibility tool."[…]

• From Newsbook Malta: “Federation slams decision to remove disabled children from mainstream education”

The Malta Federation of Organisations of Persons with Disability (MFOPD) has criticised a decision that will see some students with disabilities removed from their mainstream school environment from next week, warning that the move undermines their right to inclusive education and was taken without consultation with disability organisations.

[Malta is a small island nation in the Mediterranean Sea, near Italy.]

[…]The federation said that, without any consultation with disability NGOs or the Commission for the Rights of Persons with Disability (CRPD), educational authorities had decided that, from Monday 8 June, some students with disabilities would be required to participate in a three-week learning programme in a segregated setting.

[…]“They are entitled to attend school and benefit from their educational programmes until the end of June, just as their peers do,” the statement said.[…]

• From The Times (U.K.): “Children too easily diagnosed with ADHD and autism, GPs say”

Family doctors believe diagnoses for ADHD and autism are being given out “too easily” to children, including to those who may simply need behavioural help, a survey has found.

[…]The survey found that 57 per cent of GPs agreed that “financial entitlements linked to autism or ADHD diagnoses strongly influence parental requests for assessment”.

Claims for child disability living allowance (CDLA), which is not means-tested, doubled from 420,000 children in 2016 to almost 900,000 last year. The rise was driven almost entirely by children under the broad category of “behavioural disorder”, plus learning difficulties and ADHD.

[…]Charities have tried to debunk the idea that parents are seeking diagnosis for financial benefit by pointing out the long, stressful and arduous route to formal diagnosis and the hidden extra costs of raising a child with special needs, such as specialist therapies, legal fees while fighting for support and disruption to their work due to caring responsibilities.[…]

Medical Motherhood brings you independent, ad-free news and information each Sunday for raising disabled and neurodivergent children.

Free subscribers help this work reach more families. Paid subscribers make it sustainable. Get the newsletter in your inbox, give a gift subscription or become a paid supporter to help keep this resource available to everyone.

Not ready for a subscription but like what you read here? You can also buy me a coffee.

Follow Medical Motherhood on Facebook, Bluesky, X, TikTok, Instagram or Pinterest. Visit the Medical Motherhood merchandise store.

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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 Oregonian: “Most Oregon preschoolers with disabilities now learn alongside non-disabled peers”

Oregon now includes most preschoolers with disabilities or special health needs in regular preschools or other early learning settings, a big switch from just five years ago, when nearly two-thirds of such children attended programs exclusively for kids with special needs.

State education leaders celebrated that win recently, noting it was the result of a years-long drive to allow young children of differing abilities to learn and develop side by side.

[…]The number of Oregon children with disabilities taking part in inclusive early learning programs grew for four straight years, with roughly 2,100 more children served in those settings in 2024-25 than in 2020-21, a 76% increase, state officials said. That means 57% of young children with disabilities were educated alongside non-disabled peers in 2025, up from 38% in 2020, they said.[…]

• From Atlanta News First: “Georgia therapy clinic closing as Medicaid company cuts reimbursement rates by 20%”

Hundreds of special needs children in Georgia may lose access to critical therapy services as a major Medicaid company cuts reimbursement rates to providers.

Aileen Deogracias is the owner of Therapy Works, a physical, occupational and speech therapy clinic for children. She said her clinic will close May 31, 2026, because of the cuts. “We’re closing our doors because we’re up for renewal and we can’t afford it anymore,” she said.

The toys that have helped hundreds of children learn to walk, talk and grow are now being packed into boxes.

[…]Of 159 Georgia counties, 40 do not have any speech, physical or occupational therapists in the Medicaid network. That means at least 25% of the state has medical deserts for low-income families seeking special needs services.[…]

• From Pulitzer Center: “Number 62: Families Rally Amid Cuts to Rare-Diseases Research”

The developmentally disabled community is at a precipice. Trump’s cuts to special education, Medicare, and scientific research have trickled down to impact the most vulnerable. This reporting project blends the personal with the political. The reporter’s own child was number 62 in the world diagnosed with a rare genetic condition called Nicolaides-Baraitser syndrome (NCBRS). Her “special” school in California, her summer “crip” camps, her art program—spaces where this intellectually disabled teen thrives—are threatened.

Globally, it’s a similar story: research grants disappearing, loss of support services, severe shortage of trained professionals. Families being asked if they want to institutionalize their young adult. “It feels like we’re back in the early 1900s,” a British father said, describing the options presented to him when his son, number seven in the world with NCBRS, turned 18.

This project uses one rare syndrome to illuminate challenges for people with developmental disabilities. The 330 NCBRS youth are medical mysteries scattered around the globe. No matter their country, from those with decent welfare-safety nets, to those with none, these kids are falling through social, educational, and medical cracks. […]

• From The Journal (Ireland): “Mother and carer: You don’t appreciate public services until your child needs them to survive”

When you become the parent of a disabled child, you start noticing things most people never think about.

[…]You begin noticing the invisible architecture of a society.

And strangely, I think one of the biggest things I have learned since moving to Ireland is that people often do not realise the value of something until they have experienced life without it.

[…]I grew up in Zambia and later raised my son Oliver there during his early years. Oliver has cerebral palsy. When we lived in Zambia, he had a stroller.

[…]At the time, living there, I think I simply accepted that reality because it was normal to us. Human beings adapt incredibly quickly to whatever environment they are in.

Then we moved to Ireland.

And suddenly, we entered a society where some of that weight was being collectively carried.[…]

• From Stossel TV via Reason Magazine: “This Social Worker Wants To Help Kids With Special Needs. Louisiana Won’t Let Her.”

[…]Bizarrely, in many states, if you want to start a business, you first must convince bureaucrats that your business is “needed.”

Four years ago, Louisiana blocked social worker Ursula Newell-Davis from helping kids with special needs. Bureaucrats said she hadn’t proved her business was needed.

[…]Thirty-five states and Washington, D.C. have (appropriately named) “CON” laws requiring entrepreneurs to get a Certificate of Need before opening certain businesses.

[…]Now, four years later, [as her] latest lawsuit winds its way through America’s bureaucratic courts, and bureaucrats still won’t let Newell-Davis do respite work.

But good news: Newell-Davis now helps people with special needs by employing them at her new fried chicken restaurant.

At least Louisiana’s government doesn’t get to decide if a new restaurant is “needed.”[…]

• From The New York Times: “Frank Hayden, Who Led Global Growth of the Special Olympics, Dies at 96”

Frank J. Hayden, whose research showing that intellectually disabled children benefited from athletics led members of the Kennedy family to ask for his help staging the first Special Olympics, and who then contributed to the Games’ astounding growth into a global movement, died on May 16 in Oakville, Ontario, near Toronto. He was 96.

[…]The Special Olympics, now an international juggernaut that provides training and competition for more than five million athletes from 200 countries each year, has made a significant contribution to the struggle for human rights, helping to fight the stigma against people with disabilities.

The roots of the Games lie in Dr. Hayden’s groundbreaking work. A professor of physical education, he published research in 1964 showing that Toronto schoolchildren with intellectual disabilities got stronger and fitter with physical training. His findings knocked down common views that people with such disabilities were inherently weak, inactive and overweight.[…]

• From USA Today: “Denise Richards opens up about parenting 'special-needs' daughter”

Growing up is never easy for any parent, and Denise Richards is no exception.

The actress and reality-TV star, whose daughter Eloise is disabled, opened up about her parenting challenges in an Instagram post Sunday, May 24, which coincided with the teen’s 15th birthday.

[…]"I can't believe 15 [years] old already," Richards, 55, wrote alongside a compilation video of Eloise. "Having a special-needs child in a lot of ways gets more challenging, with me worrying more about her future the older she gets."

[…]Eloise has the condition Monosomy 8p, a rare chromosomal disorder that is caused by deletion, or monosomy, of a portion of the eighth chromosome, according to the National Organization for Rare Disorders.[…]

Medical Motherhood brings you independent, ad-free news and information each Sunday for raising disabled and neurodivergent children.

Free subscribers help this work reach more families. Paid subscribers make it sustainable. Get the newsletter in your inbox, give a gift subscription or become a paid supporter to help keep this resource available to everyone.

Not ready for a subscription but like what you read here? You can also buy me a coffee.

Follow Medical Motherhood on Facebook, Bluesky, X, TikTok, Instagram or Pinterest. Visit the Medical Motherhood merchandise store.

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Medical Motherhood’s news round up

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

• From Politico: “RFK Jr. announces 'the largest autism fraud bust in American history' and it’s in Minnesota”

The Department of Justice said Thursday it has arrested and indicted 15 people in Minnesota for fraud schemes involving $90 million in Medicaid funds.

[…]Health Secretary Robert F. Kennedy, who appeared at the press conference alongside Oz and Assistant Attorney General Colin McDonald, said the arrests were “the largest autism fraud bust in American history.”

McDonald said the accused had stolen money intended to house people who are homeless; to provide services for children with autism; and to help people with disabilities live independently.

Two of the defendants indicted Thursday were accused of paying kickbacks to parents who brought their children to autism centers where the children were diagnosed with the neurological condition, “regardless of medical necessity,” and then billed for autism services that were never provided, McDonald said.

One patient who was supposed to receive around-the-clock care but didn’t was later found dead, McDonald said.[…]

• From KFF Health News: “Kids Keep Getting Stuck in Hospitals, Even After Being Cleared for Discharge”

[…]In that moment, Quette knew that she and her son’s grandmother could no longer meet his medical needs on their own at their Illinois home just outside St. Louis. He had become paralyzed when he was shot in 2023, and, despite their efforts, they struggled to take care of him. But she never imagined that her quick call for help that day would turn into a months-long hospital stay for her son — even after he was well enough to be discharged.

She said their family had been begging hospitals for a home health aide to help care for his wounds, only to be accused of neglect. […]

“It’s definitely a national problem,” said Elaine Lin, a pediatrician at Boston Children’s Hospital and the chair of the American Academy of Pediatrics’ Section on Home Care. “Every state has different options in terms of where kids can go post-acute care. But in general, there’s many of our kids with medical complexity who just don’t have access to the appropriate home nursing to bring them home safely.”[…]

• From Inside Investigator (Connecticut): “Amendment to DDS eligibility bill delays change in ID definition”

When HB 5557 was first proposed last legislative session, it was intended to immediately replace Connecticut’s IQ-based definition of intellectual disability (ID) with a more comprehensive definition provided by the DSM-5. Before its passage, however, it was amended to give DDS officials another year to draft a report outlining recommendations for a new definition, an implementation timeline, and an estimate of the cost to the state.

“That’s disappointing,” said Kelly Glaze-Capuano, whose son, Alex, has been diagnosed with ID but denied DDS services. “DDS has been doing this for a long time, and if a lay person such as myself knows what the regulations are for the definition in other parts of the country, they should be well aware of the discrepancy between our state and others.”

At least 43 other states have statutory definitions of ID not predicated on IQ, while Connecticut’s current definition stipulates that a person must have an IQ of 69 or below to receive services. This means parents of disabled children can be denied eligibility based on a single IQ test, even if they have an overwhelming body of evidence that would otherwise show their child’s disability. […]

• From The Times (U.K.): “I could be earning £130,000 but I’m on benefits fighting for my child”

[…]I said yes to what should have been the dream job, then went home and barely slept for a week. Eventually I called and said I was sorry to mess them around but I didn’t have the time or bandwidth to do the role justice. I’ll come back to you when I can, I told them. But that has never been possible.

My four-year-old daughter, you see, was born — after a straightforward pregnancy — with cerebral palsy.

[…]When you see the system up close you realise there is a crisis, just not the one some people imagine. I estimate I’ve spent at least six months just filling in forms for Romy to get her the help she needs — help that keeps being turned down by the local authority (LA). As a result I’ve gone from being a person who had a high-flying career and paid tax to one who has effectively been taken out of the workforce while trying to advocate for her daughter.[…]

• From BBC: “'I've given up eating hot meals to pay energy bills to keep my son alive'“

[…]In order to keep all those machines powered, she says she was forced to make cuts after soaring energy prices left her facing bills of more than £400 a month, adding "I can't switch anything else off".

[…]She turns lights off and no longer cooks hot meals, only eating one meal of Marmite sandwiches and fruit every day.

[…]“I feel shame that I have to claim benefits from the government, because I’ve worked hard all my life and now I can’t.

“I just wish people could see how hard it is for families like mine, that we’re not sat around taking payouts from taxpayers pockets, that we work really hard and we do have value.”

[…]And she’s not alone.

Disability charity Scope estimates disabled households need an extra £1,095 each month on average to cover costs.[…]

• From JAMA Pediatrics: “Inequities Along the Early Intervention Care Cascade for Very Preterm Infants”

[…]In this cohort study of 7169 very preterm infants, significant racial and ethnic inequities were identified at multiple points along the Early Intervention Care Cascade, with minoritized infants having a significantly decreased odds of referral, evaluation, and receiving an Individualized Family Service Plan.[…]

Medical Motherhood brings you independent, ad-free news and information each Sunday for raising disabled and neurodivergent children.

Free subscribers help this work reach more families. Paid subscribers make it sustainable. Get the newsletter in your inbox, give a gift subscription or become a paid supporter to help keep this resource available to everyone.

Not ready for a subscription but like what you read here? You can also buy me a coffee.

Follow Medical Motherhood on Facebook, Bluesky, X, TikTok, Instagram or Pinterest. Visit the Medical Motherhood merchandise store.

There is a very complicated process afoot to judge whether Medicaid services for children are actually working.

I will try to break it down as best I can because it’s very important for you to know about it — and because there is an opportunity to shape it in these early stages.

The Centers for Medicare and Medicaid Services has contracted with New Jersey-based Mathematica to create measures for children’s home- and community-based services. This is a major funding pathway for disabled children’s services — such as home care hours, therapy and medical equipment.

I will be the first to say that children’s services are not ideal. They are complex, frustrating and often incentivize behavior that is not family-friendly.

So creating new ways to collect data on these services could make them work more efficiently. But, collecting the wrong data could add to the administrative burden for families and providers, making these services even worse.

As the old adage goes: What you measure matters. So measure what matters.

From my perspective, Mathematica’s current proposal is not ideal.

Fortunately, there’s time to fix it. There is a public comment period that ends June 8, 2026.

Unfortunately, it takes quite a bit of time to understand the proposal and how you might want it to change.

In the simplest terms, there are two different questions Mathematica is asking:

• Do you like the priority order we put our 14 new measures in? (CMS has signaled they will probably select five.)

• And: what are your answers to 10 specific questions about the measures?

So, I chatted with a few people in the know and provided a cheat sheet for you. For the first question, this is the comment I submitted. Perhaps yours will be different, but let me break down, in brief, what I think is going on with the priority rankings:

1. The proposal is too focused on completing documentation and not focused enough on actual outcomes for children and families.

2. The proposal needs to focus more on prevention strategies, such as service delivery and self-direction. Already, thousands of families waste their precious free time on a mirage of services that only exist on paper.

3. We already spend so much time completing paperwork like person-centered plans and other documentation. I would recommend those measures be ranked lower unless they are tied to family satisfaction and service delivery. I don’t want completion rates of paperwork treated as a proxy for access.

Overall, CMS should prioritize measures that answer the questions families most need answered:

• Are children receiving the services they are assessed and authorized to receive?

• Can families direct care in ways that preserve safety, continuity, and dignity?

• Are children able to remain at home and participate in school, family, and community life?

• Are states identifying and correcting gaps before families reach crisis?

If the data support movement in this direction, I think it’s a win. But if they just generate more hoops to jump through, we will be even further behind.

In addition to the priority ranking, there are 10 specific questions. A lot of them have to do with ages of children, such as whether there should be a minimum age for certain measures or whether there should be age groups. The public comment I developed in collaboration with others for that is here.

If you are going to submit a comment, please be sure to follow the instructions on the website precisely. And: Do it before June 8.

This is the first step of a longer process. If CMS chooses to adopt any of these measures, the next step would be a rulemaking process, which will have its own notice and public comment period.

Let’s get in on the ground floor to demand real access for children and no new administrative burdens.

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Medical Motherhood’s news round up

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

• From Times Union: “State finds school district held 5 students in wooden boxes”

A public school district in northern New York broke state education regulations at least six times when it chose to confine students with disabilities in padded, wooden boxes in the classroom, an investigation by the New York State Education Department found.

The state ordered the Salmon River Central School District to change its policies and special education practices by this fall and submit paperwork to demonstrate its compliance.

[…]The release of the state report is the latest development in a monthslong saga that resulted in criminal investigations, the introduction of new legislation, condemnation from the governor and the departures of multiple school administrators in the district since mid-December, when photos of one of the crates emerged on Facebook.[…]

• From Disability Scoop: “Ed Department Unleashes $144 Million For Special Education”

[…]The U.S. Department of Education said this week that it will award an additional $144 million to state and local governments to use for IDEA programs.

[…]At the same time, federal officials are touting a new option for states.

[…]“For example, if an expectant mother learns through genetic testing that her child will be born with Down Syndrome and will therefore be eligible for Part C early intervention (EI) services in her State upon birth, a State choosing to use this flexibility could work with her to ensure she understands how the IDEA Part C system operates, refer her for services, and, within 45 days of the child’s birth, ensure that an individualized family services plan (IFSP) is established to provide IDEA Part C EI services,” the guidance states.[…]

• From Forbes: “How To Provide For Children Who Fall Between Disabled And Independent”

[…]According to Andrew H. Hook, former president of the Special Needs Alliance and an ACTEC Fellow, “Most families and their advisors have little to no understanding that a beneficiary can qualify as an EDB through the ‘chronically ill’ category without a formal SSI/SSDI determination of disability.” Many advisors default to the SSI/SSDI route because that is the one they know, leaving the chronically ill pathway under IRC §7702B(c)(2) largely underused.[…]

• From Straight Arrow News: “What’s behind the vanishing safety net for families with disabled children”

[…]There’s an alarming shortage of the direct support workforce, Kim Musheno, Senior Director of Medicaid Policy at The Arc of the United States, told Straight Arrow.

“If no provider agency has staff available, or if wages are too low to recruit and retain workers, those hours are effectively meaningless,” she said.

[…]Today, roughly 63 million American adults — or one in four — provide caregiving support to adults or children with a medical condition or disability, according to the same 2025 report. Collectively, family caregivers provide an estimated $1 trillion in unpaid care each year.

For many families, navigating the system creates one more overwhelming burden to wrangle.

[…]But unlike institutional care, home- and community-based services (HCBS) are optional under Medicaid. States can “limit the number of people served, create waiting lists, restrict hours, or narrow eligibility even when the need is clear,” said Musheno.

Families who spoke with Straight Arrow said federal cuts of the One Big Beautiful Bill, which includes $911 billion in Medicaid cuts over the next several years, will directly impact their states’ HCBS services.[…]

• From Portland Press Herald (Maine): “Mixed reaction to changes in Medicaid services for children with disabilities”

Advocates had a mixed response to rule changes the Maine Department of Health and Human Services recently made for programs that serve disabled children.

The child advocates had raised the alarm earlier this year about the proposed rule changes for Medicaid services that aim to improve behavioral and developmental skills for disabled children. They contended the pending rule changes would restrict access by making it harder for some children to qualify for the programs.

DHHS received hundreds of public comments against the changes when they were pending this winter. The agency made improvements to the final rules, which were adopted at the end of April, but there’s still numerous concerns, said Nancy Cronin, executive director of the Maine Developmental Disabilities Council.[…]

• From NC Health News (North Carolina): “NC families with disabled children press lawmakers to maintain funding as federal Medicaid cuts loom”

[…]Home care agencies have more needs than their current workforce can meet. About 20 percent of home care aide positions go unfilled at any given time. “And then the turnover, just churn,” [home care advocacy group leader Lee] Dobson added, runs between 50 percent and 80 percent. “You’re just always trying to recruit staff.”

Those people who provide Medicaid-reimbursed personal care services received a bump in pay near the end of the pandemic. That helped retention, but advocates are afraid that those dollars could go away as North Carolina’s Medicaid budget will be under increased pressure this budget cycle.

Dobson said several bills have been introduced that would fund all these services, plus supply $120 million to increase salaries for personal care service providers. None of those bills have moved past the introductory stage.[…]

• From The Irish Examiner: “Children with disabilities 'being failed twice' by lack of services and system 'that doesn't recognise their needs'“

Waiting lists for children with an intellectual disability to be referred to the HSE’s child mental health services almost doubled in 2025 as a lack of resources delayed the process, new figures reveal.

[…]The Irish Examiner previously reported mental health services for children with intellectual disabilities are funded at less than half the HSE’s own requirements for a fully functioning service. […]

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. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

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A Medical Motherhood reader who would like to remain anonymous submitted this poem after a particularly brutal IEP meeting — the Individualized Education Plan meeting that is supposed to determine supports for disabled children at school. The Individuals with Disabilities Education Act or IDEA created this team approach. When it works well, parents, teachers, specialists and administrators — and hopefully the child themselves — work together to come up with a plan for how the student can access their civil right to a free and appropriate public education.

When it doesn’t… it becomes a pressure cooker for deep-seated resentments and systemic ableism.

How have your experiences with IEP meetings gone?

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 American Academy of Pediatrics: “Nothing About Us Without Us: Centering Voices of Children and Youth With Disabilities ”

[…]To our knowledge, the authors of Youth With Medical Complexity Perceive Disability Discrimination and Disability-Affirming Care are the first in the academic pediatric literature to interview young people with medical complexity themselves […]The participants highlight how limited clinician knowledge of disability may truly be, leading to uncertainty about how to provide care and communicate effectively with patients and families.

Clinicians often make assumptions and may seem uninterested in the patient, their perspective, or learning how to support them. Much of what these young people shared is echoed in past caregiver or adults with disabilities’ studies, demonstrating the pervasiveness of ableism—misconceptions about and discrimination toward people with disabilities—in medicine.[…]

• From New Jersey Monitor: “NJ’s special education investigations slow, unenforced, advocates say”

Advocates told Assembly lawmakers Thursday that a key tool available to parents of children who require special education services is underenforced by the state, leaving most to pursue other, slower dispute resolution processes that could leave them with hefty legal bills.

Speakers told the Assembly Education Committee that New Jersey’s special education office often allowed districts to self-report compliance with corrective action plans issued as a result of a state complaint. The lack of more direct oversight sometimes meant problems with students’ special education services were never resolved, they said.[…]

• From Disability Scoop: “National Hotline For IDD Caregivers Proposed”

A group of federal lawmakers if pushing to establish a first-ever national hotline for caregivers of those with developmental disabilities.

The toll-free number would operate around the clock and be staffed by trained professionals equipped to provide emotional support, brief intervention and mental health referrals, according to U.S. Rep. Rob Menendez, D-N.J., who introduced a bill to establish the hotline.

The legislation known as the Caregiver Access to Resources and Emotional Support, or CARES, Hotline Act also calls for the government to create and maintain a national database of caregiver resources and offer peer-to-peer counseling allowing caregivers to connect with others with similar experiences.[…]

• From NBC News: “Families caring for disabled relatives face unthinkable choices as Medicaid cuts loom”

[…]Six years later, Gonce no longer worries about whether Jason is being cared for — because now she does the job herself. Under a Medicaid-funded program that allows families to be paid as caregivers, she earns about $67,000 a year to look after him full time, bathing, feeding and keeping him safe.

The program, Gonce said, “saved my family.”

Under his mother’s care, Jason’s seizures stabilized and he began making small gains in independence and daily routines. Her constant fears began to ease.

Now, families like hers worry that stability could soon collapse.

A sweeping federal spending package signed by President Donald Trump last year — his “big, beautiful bill” — is expected to slash Medicaid funding by about $1 trillion over the coming decade, just as many states are already struggling with rising costs. At the same time, a growing chorus of conservative policymakers and activists has begun to question whether the government should pay family caregivers at all, portraying the programs as wasteful and prone to fraud.[…]

• From The 74: “Wealthy Students More Likely to Get Disability Accommodations, Study Finds”

While intended as a universal benefit, educational support for disabled children is significantly segregated by class, according to a paper released in January. The decade-spanning analysis of state and federal data found that wealthy families were twice as likely as poorer ones to be granted accommodations under the federal law Section 504.

A similar split was present in the vast architecture of special education offered through Individualized Education Programs — though in that case, the dynamic was reversed, with IEP recipients much more likely to come from low-income families than well-off ones.[…]

• From Houston Public Media: “Dozens of parents speak out against Houston ISD’s special education changes”

Parents, teachers and students spoke out against Houston ISD’s move to centralize special education services at the district’s school board meeting Thursday night.

The plan, announced last week after several news outlets including Houston Public Media reported on the proposed changes, taps some schools as special education hubs and would move thousands of students in special education to 150 campuses in order to access their classes and programs.

[…]The district defended its forthcoming changes and, for now, is still moving forward with the plans despite the U.S. Department of Education’s Office of Civil Rights opening a federal investigation into the district over the changes. The investigation, opened just two days after the district announced their changes, seeks to learn if the updates to special education violate the rights of students with disabilities.

[…]“The allegations described here are alarming,” [Assistant Secretary for Civil Rights Kimberly] Richey said. “The Trump Administration will fully investigate this situation and fight to ensure every child with a disability receives the education and support guaranteed under the law.”[…]

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. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

Follow Medical Motherhood on Facebook, Bluesky, X, TikTok, Instagram or Pinterest. Visit the Medical Motherhood merchandise store.

Sometimes we laugh so we don’t cry. Lenore Eklund has been working on a home modification for her daughter for more than a year. “It's felt like a big saga that I've summed up into four panels for the enjoyment of parent readers!” she said when she sent along the comic for this month. I had to chuckle.

I’ve definitely summited my own Authorization Ascent or Referral Ridge. How about you?

Contest update

Reader Sandra Smith is the winner of our Bingo contest for letting me know she was playing. Sandra, enjoy your comped subscription to Medical Motherhood. Thanks for playing!

If you want to play Medical Motherhood Bingo just for fun, download your bingo board here. Thanks again to Alicia Ibaraki for developing it!

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Medical Motherhood’s news round up

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

• From ProPublica: “The Trump Administration Aims to Penalize Disabled Adults Who Live With Their Families”

[…]The [Trump] administration is working on a rule change that would deduct the value of a disabled adult’s bedroom from their SSI allotment, even if the family members they live with are poor enough to qualify for food stamps. This would mean slashing the benefits of some of the most low-income SSI recipients by up to a third — about $330 a month in [recipient Shy’tyra] Burton’s case — or ending their support altogether.

[…]It won’t matter if the SNAP program has already determined a family is poor enough to receive aid; anyone living at home beyond age 18 without paying full rent will be treated as if they have a benefactor. The value of their bedroom as well as any income and assets their family may have will be calculated and recalculated as often as every month and deducted from their SSI check.[…]

• From Stateline : “How a legal challenge over gender dysphoria became a fight for disability rights”

[…]After President Donald Trump was reelected and his administration made clear it would not enforce the Biden rule protecting gender dysphoria, eight states pulled out of the lawsuit. Their attorneys general scrambled to distance themselves from it, amid a swift backlash from the disability community that warned the suit imperiled federal protections for all people with disabilities.

But in a surprising move, nine states chose to stick with the lawsuit anyway, and in January amended their complaint.

They’re now asking the court to strike down a part of Section 504 that requires states to provide disabled people with services in their communities whenever possible, rather than in institutions such as state hospitals and nursing homes.[…]

• From Disability Scoop: “Education Secretary Says Department Still Working To Offload Special Ed”

U.S. Secretary of Education Linda McMahon says programs for students with disabilities could be divided up among multiple agencies as the Trump administration works to dismantle the Department of Education.

McMahon told lawmakers on Tuesday that no final decisions have been made, but she signaled that her agency still intends to offload programs under the Individuals with Disabilities Education Act and the Rehabilitation Act.[…]

• From The 19th: “Who gets to speak for mothers of autistic children?”

Self-described “MAHA moms” — who embrace the Make America Healthy Again movement — spoke about unsubstantiated treatments for autism and discredited theories this week as part of a key government advisory committee. It’s a shift for the panel, which used to represent a broader mix of experiences, say mothers who used to be a part of it.

[…]“I did not feel that any previous moms were representing my issues. But that’s how government is supposed to work, right? Government is a bureaucracy. It’s not supposed to work,” said [MAHA mom Ginger] Taylor, who now sits on the committee that advises the government on autism research priorities. She was, however, careful to avoid criticizing previous mothers who were members.

“I don’t judge them. I’m not mad at them. It’s just time for different people,” Taylor said.[…]

• From News6/ClickOrlando: “Florida families caring for medically fragile children say system is failing them”

[…]According to Matthew Dietz, a disability rights lawyer and professor at Nova Southeastern University, there are between 7,500 and 10,000 medically fragile children in Florida.

“Very few of them get 100 percent of the care that they need,” said Dietz, “The hours could range between 50 percent to 80 percent of what they are granted.”[…]

• From CBC (Canada): “This app lets kids with disabilities use devices with their minds. Now anyone can download it”

When Claire Sonnenberg was born with cerebral palsy, her parents were told she would never talk, walk or do much of anything on her own.

Now the smart and smiley 10-year-old plays video games, bakes and makes smoothies and pores over books using a brain-computer interface (BCI), technology that allows her to control devices and communicate using only her thoughts.

[…]Claire has been using the technology since she was three years old through a research project run by the University of Calgary and Alberta Children’s Hospital. She wears a headband that can read her brainwaves, transmitting signals to an app that interprets them for connected devices, allowing her to communicate through a tablet.

Last month, the technology Claire uses was released to the general public as an app called Think2Switch.[…]

• From The Irish Times (Ireland): “Families of disabled children awaiting needs assessments to raise frustration in Europe”

Kildare mother Vivienne Sullivan says it has been devastating to see her son Isaac (14), who has autismand ADHD, “not thrive as he should” because his needs have gone unmet for so long.

The Leixlip boy was not provided with an assessment of need, to which he was legally entitled, for almost a decade. Though his parents applied when he started primary school, he was not seen until he entered second level.

[…]Legally the HSE must begin the assessment within three months of receipt of a valid application and complete it within a further three months.

[…]Though Sullivan cannot travel to the European Parliament’s petition’s committee in Brussels on Wednesday, three other mothers with similar experiences will tell Isaac’s story along with their own children’s.[…]

• From The Sun (Malaysia): “To parents of children with disabilities: You are not alone (Opinion)”

[…]Parents of PWD need to remember: You are not weak and you are not failing. You are doing one of the hardest jobs any parent can do. Your child does not need a perfect parent, only one who is present, informed and full of love.

Love your child as they are, prepare for their future bravely and remember: you are not alone.

In Malaysia, change may be slow but it begins with parents who refuse to stay silent, who register their children, who speak up and who support one another.

This has been proven in many countries, including the United States, Netherlands, New Zealand and Taiwan. For parents who wish to advocate more effectively for their children, remember: data is power, community is strength and love, and when paired with action, creates real 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. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

Follow Medical Motherhood on Facebook, Bluesky, X, TikTok, Instagram or Pinterest. Visit the Medical Motherhood merchandise store.

If Medical Motherhood were a child, I would be signing it up for kindergarten.

It has been five years since the inaugural post in which I wrote these words:

[…]In my personal experience, having twins three months premature felt like falling through the looking glass. There was a whole world I had no idea existed and a steep, steep learning curve with huge consequences to my children when I didn’t catch on fast enough. Ten years in, I am still learning things I wish I had known a decade ago.

With Medical Motherhood, I want to add a ladder to that learning curve. I feel like SO MANY of the important things I know, I figured out when it was basically too late… or from other moms… and, unfortunately, usually NOT from the many people tax dollars were paying to help me.[…]

Well, I am now 15 years in to my medical motherhood experience and STILL learn new things all the time.

This quarter I have expanded my advocacy work — most notably by meeting up with others from around the country in Arizona for a Little Lobbyists training. It served to deepen my commitment to getting quality information out to our community.

Medical Motherhood is valuable if it offers my readers a sense of community, knowledge, insight and hope. Now, more than ever, we need that. If it has been valuable for you, please share it with others and subscribe to keep it going.

On that note, I’ll tell you something I’ve only told a few close friends.

Medical Motherhood’s quarterly behind-the-scenes report is an exclusive perk for paid subscribers, produced in February, May, August and November. Paid subscribers support my work, enabling Medical Motherhood to offer news round-ups and original essays every Sunday. By upgrading your subscription, you can support independent writing with no ads or hidden agendas. Memberships start as low as $6 per month.

Read more

Hey readers,

Just the news round-up this week but don’t forget to check out our Bingo game! Let me know you are participating and you’ll get a shout out in our special Mother’s Day edition next Sunday.

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Medical Motherhood’s news round up

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

• From KFOR Oklahoma’s News: “Parent pushes to restore SoonerCare for her disabled children”

A Moore parent is speaking out after her disabled children’s SoonerCare benefits were abruptly terminated.

Ryan McLaughlin’s 14-year-old daughter, Lucy, and her 17-year-old son, Henry, rely on multiple daily medications.

McLaughlin says her family is able to afford the medicine and the everyday care through the Tax Equity and Fiscal Responsibility Act, also known as TEFRA. The program provides SoonerCare to families with disabled children regardless of the family’s income.

Editor’s note: Read more about TEFRA and Julie and Katie Beckett’s push for this legislation in the 1980s in this 2022 issue of Medical Motherhood.

• From Disability Scoop: “Postsecondary Program To Prepare Those With Autism To Work In Video Game Industry”

A unique studio that trains people with autism to work in the movie business is expanding to a new field: video games.

Exceptional Minds says that it will launch a game arts program this fall. The four-year postsecondary program will prepare individuals on the spectrum to work as game artists and designers.

• From The New Indian Express: “21 specially-abled students from Andhra Pradesh reach Everest Base Camp”

They were told they couldn’t walk straight, couldn’t hear, couldn’t see, couldn’t dream. They were mocked with questions like “Why attempt such an expedition when you can sit at home?” and dismissed with cynicism. “Even the rich and strong fail at Everest, what can poor disabled children do?”

But on the icy slopes of Nepal, at 5,364 metres above sea level, 21 specially-abled students from Andhra Pradesh government schools turned those taunts into triumph. Their flag fluttered proudly at the Everest Base Camp — a symbol of resilience taller than the mountain itself.

Under Sarva Siksha Abhiyan (SSA), Andhra Pradesh became the first State in the country to send a team of children with special needs (CwSN) on such an expedition. The trek, flagged off on April 15 by HRD and IT Minister Nara Lokesh, culminated in the final week of April with the team reaching the Base Camp.

Lokesh, in his congratulatory message, said, “For the first time in world history, 21 specially-abled students from our government schools have scaled Everest Base Camp. To a society that often sees disability as a barrier, your self-confidence is the strongest answer.[…]”

• From Mother Jones: “What RFK Jr. Doesn’t Get About Paid Family Care”

[…]Most states allow parents of adult children with disabilities, family members of children with disabilities, and family members of the elderly to be paid for providing attendant care.

Robert F. Kennedy Jr. is now saying all of this should be considered “natural supports” and unpaid labor. And the underlying rhetoric is that this labor should be provided by women.[…]

• From The San Diego Union Tribune via Disability Scoop: “Show Offers Solo Comedic Take On Being The Mom Of A Child With Autism”

A humorous take on the challenges, joys and chaos of raising a son on the autism spectrum will be presented by Megan Dolan in Poway [California] on Sunday afternoon.

[…]The 80-minute solo show with no intermission covers essentially the first year after Dolan’s son was diagnosed with autism at age 5. He is now 16.

[..]“It’s very universal,” she said, adding that the show helps create a connection by touching upon themes such as redemption and resilience while incorporating levity over the absurdity of situations at times.

“I really think it is great for a parents’ night out, and recommend it for ages 14 and up because there is some well-placed profanity, which every show about parenting needs,” she said.[…]

• From Jurist News: “Sweden censured over deportation of disabled child”

The UN Human Rights Committee determined Monday that Sweden violated the rights of a child with severe disabilities by deporting him to Albania without ensuring access to essential medical care.

The finding concerned E.B., an Albanian national diagnosed with multiple complex and life-threatening conditions, including autism, grave developmental disorder, spastic diplegic cerebral palsy, hydrocephalus, and epilepsy.

[…]In its findings, the Committee recalled that states party must refrain from deporting individuals when there are substantial grounds to believe they would face a real risk of irreparable harm in the receiving country.

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. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

Follow Medical Motherhood on Facebook, Bluesky, X, TikTok, Instagram or Pinterest. Visit the Medical Motherhood merchandise store.

For those interested in the paid family caregiver debate, it has been a blockbuster news week.

On April 16, Secretary Robert F. Kennedy, Jr. testified in front of the U.S. House Committee on Ways and Means in a budget hearing. (Watch the video here.) Kennedy criticized waiver services that allow family members to be paid to provide services “that they used to do as family members for free and this is rife with fraud because we at CMS to determine whether they actually performed that duty or not.”

Kennedy is the head of the U.S. Department of Health and Human Services, which manages the Centers for Medicare and Medicaid (CMS). As such, he should know that waivers were invented by the Reagan Administration as a much more humane (and affordable) way to provide Medicaid-funded care to disabled humans. These programs “waive” the rules for institutional care and allow for people to be cared for in their homes and communities. Home care waivers are also called Home and Community Based Services. Most of the people on waivers are not the elderly (though those do exist) but disabled adults and children with lifelong conditions.

Kennedy should also know that there are many checks and balances on these services. They are not easy to qualify for and there are numerous hoops to jump through once you do. These include electronic visit verification in which disabled people’s every movement is tracked through their caregiver. We do not expect able-bodied people to live under a surveillance state, yet we make disabled people do this and they are still criticized.

Finally, Kennedy seems to equate sudden increased use of the service with fraud. In fact, disabled families have been complaining for decades that the home care hours they have been promised are impossible to use and that there is a massive shortage of these workers. During the flexibilities allowed under the COVID-19 Public Health Emergency, we learned that family members are reliable care providers, so more states started allowing this permanently. The explanation for this is not simply fraud — it means suddenly disabled adults and children are finally getting the service they have been promised for decades.

Just over a month ago, I wrote that the Medicaid ‘fraud’ witch hunt had begun. They started with claiming that providers — agencies, organizations, etc. — were committing massive quantities of fraud. There are certainly some cases of that and we already have a massive apparatus to catch and prosecute those cases. But the rhetoric has already slipped to blaming grandchildren of the elderly for getting paid to “balance a checkbook” or “drive to the doctor’s office.”

Parents of disabled children who are, or want to be, paid care providers should start speaking up now because we are the next stop on the train.

If you want to speak about this issue directly to decision makers, here’s how.

In case you missed last week’s issue, we’re playing Bingo all this month. Download your copy here. Read more:

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Medical Motherhood’s news round up

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

• From NBC News: “RFK Jr. draws backlash for ripping Medicaid programs that pay people to care for relatives”

Health and Human Services Secretary Robert F. Kennedy Jr. sparked outrage among disability rights advocates with recent comments alleging widespread fraud in Medicaid programs that pay people to care for elderly or disabled family members — a system millions of Americans rely on to survive.

• From Washington State Standard: “Why families caring for children with disabilities are suing Washington state”

“I’m employee of the month, Colby would tell you, even though he can’t,” she said. “I show up every day. I never have a sick day, I’m always here.”

When it comes to support from the state, Thompson, like many parents providing care to disabled children, falls into a gap.

Washington compensates parents providing care to disabled children on Medicaid if they are over 18, but not if they’re minors. Other relatives can get paid for taking care of children, just not parents. Professional nursing and personal care are covered, but families say labor shortages make these services often difficult to find.

This has forced some parents to quit their jobs to care for their children full-time without pay. Some fear that such little support will leave them with no other choice than to institutionalize their children.

In response, families have brought a potential class-action lawsuit against the state in federal court for not ensuring that children with developmental disabilities on Medicaid get the nursing and care services they qualify for.

“It’s really frustrating to know that the state of Washington has been taking advantage of us, all of our families, to take care of our kiddos for free, and there’s not a damn thing anybody can do about it,” Thompson said.

• From Fox 13: “Errors and denials: The hidden cost behind Florida’s disability waitlist”

While thousands of children with severe disabilities wait years for home-based care, Florida's Agency for Persons with Disabilities (APD) has been returning unspent money to the state.

[…]Heading into 2026, the APD has pointed to progress, citing a reduction in the waitlist from roughly 20,000 to 16,000. However, families in the backlog — as well as longtime recipients of home-based services — say the reduction needs context. Some received benefit termination notices due to errors in a process commonly known as Florida’s Medicaid unwinding.[…]

• From Disability Scoop: “Long-Awaited Safeguards For Medicaid Home And Community-Based Services Put On Hold”

Federal officials are delaying enforcement of a new mandate aimed at helping people with disabilities experiencing issues accessing Medicaid home and community-based services.

The Centers for Medicare and Medicaid Services said recently that it will hold off on a requirement that states establish a grievance system.

• From Nature: “‘Should I quit?’: an empirical analysis of work-home dynamics and turnover intentions among parents of autistic children”

[…]While research has predominantly focused on autistic children, there is a notable gap in studies that focus on their parents, especially those who are currently in the workforce. […]While the study specifically targets parents of autistic children, its broader implications could extend to working parents of children with other conditions, where the development of targeted initiatives, policies, and practices would greatly assist in retaining them in the workforce. […]it is hoped that this study will lead to greater awareness of the prevalence of autism and draw more attention to parents and caregivers of autistic children, especially on the difficulties in coping with the simultaneous demands from work and home domains.[…]

• From The Tennessee Journal: “Disability Care Cuts Signal Tough Choices Ahead”

[…]Lawmakers in states led by both parties are considering cutting Medicaid funding for programs that help people with disabilities live at home, as they seek to rein in rising health care costs during a tight budget year.

[…]Lawmakers nationwide may weigh even more painful cuts to home-based services in future years, health care policy experts say, as the One Big Beautiful Bill Act’s Medicaid cuts ramp up.

“We’re kind of at the tip of the iceberg,” said Alice Burns, associate director of the program on Medicaid and the uninsured at KFF, a health policy research nonprofit. […]

• From News Channel 8 (Oklahoma): “Lawsuit claims widespread use of excessive force against disabled students in TPS schools”

In a stunning 65-page lawsuit, Wayman Tisdale Fine Arts Academy is focused upon as the sight of an assault on a special needs first grader in 2024 by a staff member who would later plead guilty to felony child abuse. And according to the lawsuit, Tisdale is just the tip of the iceberg when it comes to the use of alleged excessive force against disabled students in TPS schools.

“We really hope that this lawsuit, spurs TPS to look at its treatment of these kids,” said Attorney Karin Portlock. She represents the family of the Tisdale student and describes TPS as an organization more concerned with public perception rather than the welfare of children. As the lawsuit states, “No one told Ms. Isom, JI, biological grandmother and adoptive mother, that he had been attacked. But TPS nevertheless issues a press statement that same day stating, ‘there is nothing we take more seriously than the safety and wellbeing of our students,’” reads the complaint.[…]

• From JAMA: “Mortality Among Youth and Young Adults With Autism Spectrum Disorder, Intellectual Disability, or Cerebral Palsy”

This population-based cross-sectional study found significantly higher mortality for youth and young adults with ASD, ID, or CP compared with the general population for most causes of death. Disability mortality is difficult to ascertain via death certificates alone, since International Statistical Classification of Diseases and Related Health Problems, Tenth Revision codes for ASD, ID, or CP were not listed as a cause of death for most cases.

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. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

Follow Medical Motherhood on Facebook, Bluesky, X, TikTok, Instagram or Pinterest. Visit the Medical Motherhood merchandise store.

Reader Alicia Ibaraki came up with a Medical Mama bingo card which you can download here.

If you print off your own copy, I can speak from experience and say that crossing the spots off with a black marker is cathartic. And hey, I’m almost at a Bingo. I have to decide what my treat will be!

Yes, I printed it because I’m an elder millennial, but you can also just save it to your phone and cross off your bingo boxes digitally.

Anyone who gets a Bingo before Mother’s Day — Sunday, May 10 — please let me know! I’ll give away a free paid subscription (or an extra year on your current subscription) to the first person to get a bingo. Plus! Anyone who even participates in the bingo game, tell me and I’ll enter you in a drawing for a subscription. Winners and participants will be announced in our special Mother’s Day edition!

Download your card now.

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Medical Motherhood’s news round up

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

• From Miami Herald: “Florida failing its most vulnerable children; baby dies, appeals court says”

Florida’s “widespread” violation of severely disabled children’s civil rights has caused scores of youngsters to be raised in sterile institutions far from their families, a federal appeals court found, rebuking the state for failing Florida’s frailest children.

The 11th U.S. Circuit Court of Appeals found that Florida’s unwillingness to provide adequate in-home nursing care to the state’s most fragile children has caused at least 139 youngsters to be institutionalized in nursing homes generally reserved for elders, some of them there since they were babies. Another 1,800 children are at risk of being placed in nursing homes due to the state’s failure to provide care.[…]

• From The Center Square (Illinois): “Lawmaker calls for department reform supporting Illinois families with disabled children”

A Republican state representative in Illinois is continuing his push for simpler and less burdensome paths to care for disabled residents and their families.

A longtime disability advocate in the statehouse, Rep. Charlie Meier, R-Okawville, gathered with advocates and parents Tuesday to speak about his proposed legislation that would address their perceived failings of the state’s Department of Human Services.

House Bill 5129 would prevent families or guardians of children with developmental disabilities from having to give up custody of their child in order to access more state services.[…]

• From The 74: “Shaping Schools to Fit Students With Disabilities Leads to Academic Gains”

In traditional school settings, students with disabilities often bear the burden of advocating for accommodations and ways to fit into classrooms not made for them. But at three schools in New York, Minnesota and Wisconsin, these students are at the center of operations — and it’s paying off with improved student outcomes.

New case study research of these schools, shared exclusively with The 74, was published Thursday by Education Reimagined, a national nonprofit that helps schools implement learner-centered education. It’s an approach where young people have ownership of their education, learn in their communities and show their knowledge through multiple ways, not just tests, according to the nonprofit.[…]

• From The Imprint: “Minnesota Foster Youth Call on State Lawmakers to Stop Seizing Their Federal Benefits”

On Wednesday, more than a dozen Minnesota foster youth and their supporters attended a hearing to implore legislators to set aside and protect their survivor and disability benefits — millions of dollars in federal funds currently fed into county coffers.

[…]State Sen. Melissa Wiklund’s bill would require counties to assess children’s eligibility for federal, state, or other cash benefits, and apply for the benefits for as long as the child is in foster care. The money would be deposited into a trust fund account and saved until they turn 18. Foster youth who need the money prior to that date could have their attorneys petition the family court for permission to access it.

Under the currently proposed legislation, the Department of Children, Youth and Families must identify foster youth whose benefits were taken between 1976 and 2026 and repay them money owed. The legislation would allocate $15 million in fiscal year 2027 for that purpose.[…]

• From BBC Scotland News: “Families fear for future of centre for severely disabled children

[…]BBC Scotland News has seen correspondence which shows NHS Lothian is considering closing one of two respite homes in Livingston and Edinburgh due to severe financial pressures.

[…]Lynsey and Mark Scott's nine-year-old daughter, Thea, has a rare genetic disorder that sees her spend up to eight days a month at Sunndach.

[…]Even with nursing staff on hand around the clock, NHS rules dictate that one parent must always be present at home, so life is hard for the couple.

[…]Thea's family moved home to be ten minutes' drive from nine-bedded Sunndach.

"Many of the families we look after at Chas are in poverty and many of them have given up their jobs to look after their children, they are full-time carers," Okasha said.[…]

• From Philadelphia Inquirer: “Disabled children are being kicked out of preschools at alarming rates, report finds”

One preschooler with autism and ADHD was excluded from a Philadelphia early childhood program two hours after her parents dropped her off for her first day because the school did not have adequate supports, according to a new report from the Education Law Center-PA.

Another was told he was “no longer a good fit” shortly after starting a program where directors had said they would have no trouble working with the boy, who has autism. He was 2.

At another school, a young boy with autism was not fed if certain staff were not present; the school suggested the child attend on a restricted schedule, and often did not allow him to use the electronic device the nonverbal boy needed to communicate his needs.

Pennsylvania’s youngest learners are expelled or excluded from preschools at alarming rates — often because of student disabilities — an illegal practice that challenges families and can cause children long-term harm, according to the report, which was released Tuesday.[…]

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. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

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It’s wonderful to see more and more people empowered to talk about care issues in local and federal policy. From New York City’s announcement of free universal preschool to New Mexico’s free universal childcare, the fact that children’s care needs exist is finally being recognized.

Yet, often when I start talking to a staff member or legislator about paid family caregiving they think I’m talking about paid family leave — an important but different topic. (My autocorrect will sometimes even try to finish my sentences for me to say paid family leave instead of “caregiving”!) Society is coming to recognize how important it is for people to maintain their income during short-term care situations. That empathy, understanding and funding seems to get muddled on the way to long-term care situations.

That’s despite the fact that disabled people have been given a failed promise of a functional care system for decades.

Long-term care needs, especially for children, are rare, which means fewer people are out there advocating for them. I hope that as more people are seeing the need for short-term care solutions, they bring us along too.

Out now: A New Model for Portland Special Education

This week, PDX Parent magazine released my story on the new approach to special education in the state’s largest school district.

Portland Public Schools is Trying a New Inclusive Schools Model. But is it Working? explores the controversy around mainstreaming versus specialized instruction at two different all-inclusive schools — one that seems like paradise and the other that seems like chaos. Here are some excerpts:

[…]In Portland, the debate over this inclusive model hasn’t fallen along familiar “us versus them” lines. Opponents are careful to mention that they want the right supports for disabled children, not that they don’t want them around. Proponents aren’t against the neighborhood schools model. What they do oppose though is rolling out these huge changes without the appropriate staff in place to meet student’s needs.

“Every day, our kids — along with the staff who support them — are experiencing alarming levels of unsafe behaviors,” reads an open letter from 72 Peninsula parents to district leadership. “Without adequate mental-health staffing; without reliable, trained adult support; and without the legally required services for students with IEPs and high needs, learning and safety are compromised.”

[…]In 2023, the Oregon legislature allocated $10.2 billion to schools — for the first time funding it to the level that the state’s Quality Education Commission has been saying is needed for the state’s schools to run well.

But it wasn’t enough.

That same year, the Portland Association of Teachers went on a 26-day strike to negotiate for better conditions and wages.

PAT President Bonilla says one biennial budget is not going to make up for decades of underfunding.

“Congratulations, legislature. You did the right thing once,” she says. “There are billions of dollars they owe us.”

Bonilla says the PAT strike taught her that getting loud is how to get the legislature to move on these long-standing issues. She now says the same thing to legislators that she says to children in her classroom: “‘If you only change things when there’s a crisis, then you are teaching me that it takes a crisis for you to change things,” she says. “I don’t want that to be the way our government works.”[…]

Read the full story at PDXParent.com.

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Medical Motherhood’s news round up

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

• From Education Week: “Trump Again Proposes Major Education Cuts in New Budget Proposal”

[…]For the second year in a row, Trump is proposing to zero out longstanding federal education programs that support educators’ professional development (currently $2.2 billion a year), services for English learners ($890 million), academic enrichment and student supports ($1.4 billion), before- and after-school programs ($1.3 billion), rural schools ($220 million), and support for students experiencing homelessness ($129 million).

[…]Discretionary grant programs that support research and educator training for special education, currently worth roughly $260 million a year, would similarly fold into the existing formula grant program that pays for special education services in schools.

[…]Investment in special education through the Individuals with Disabilities Education Act would increase modestly year over year, to roughly $16 billion.[…]

• From Portland Press Herald: “Proposed Medicaid rule changes in Maine have sown confusion, child advocates say”

Child advocates say messaging from Maine officials around proposed rule changes to a Medicaid program that serves children with disabilities has sown confusion among nonprofits delivering the benefits.

Advocates said the changes would restrict eligibility, making it harder for some children to obtain services that help with life and social skills.

“It’s a complete mess right now, and if these rules go forward it’s going to break the system,” said Nancy Cronin, executive director of the Maine Developmental Disabilities Council.[…]

• From FOX 11 News: “Survey explores housing needs in Northeast Wisconsin for those with autism or disabilities”

No one likes to think about their own death, but for parents caring for their adult children with disabilities, it’s something that needs to be planned for.

A new community survey being launched this week is meant to help take some of that worry away.

[…]In Brown, Calumet, Outagamie and Winnebago counties, more than 6,000 individuals who have autism or intellectual disabilities are living in homes of caregivers who are over the age of 60.

“We’re trying to understand, ‘What do our wide range of options need to be considering as we go forward?’” said John Edwards.[…]

• From 7News: “Maryland lawmakers advance LEAD Act to protect children who wander”

[…]A bipartisan push inspired by one little girl could soon become the first law of its kind in the nation -- aimed at protecting some of the state’s most vulnerable residents.

[…]The legislation would:

• Require statewide police and first responder training specific to interacting with individuals with autism or other non-apparent disabilities.

• Allow parents to share GPS tracking information with schools to help locate children if they wander.

• Expand school safety mapping, including nearby water hazards and other risk areas.

• Create a central hub of resources for caregivers, connecting families with tools, guidance, and support.[…]

• From Greater Birmingham Chambers of Commerce (U.K.): “Pioneering tool transforming music education for disabled children”

A groundbreaking digital tool is helping ensure that no child is left out of music lessons, especially those with upper limb impairments or absences, who may have been overlooked in the past.

[…]The tool is also proving that inclusion does not need to be expensive - the cost of adapted instruments and equipment identified as needed across all nine hubs came to just £2,346 in total.[…]

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. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

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Medical Motherhood’s news round up

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• From Fort Worth Star-Telegram via Disability Scoop: “The Fight To Stay Home: How A Lawsuit Could Upend Disability Care”

In his homeschool curriculum, 12-year-old Luke Lunday is learning about Section 504, a cornerstone of disability rights.

Championed by disability rights activist Judy Heumann, Section 504 of the Rehabilitation Act is responsible for what’s known as the integration mandate, which requires that people with disabilities have access to services in their homes and communities, rather than an institution.

[…]A lawsuit filed by the state of Texas is challenging this cornerstone of disability rights; advocates say it could eliminate the kinds of services that people like Luke rely on for basic needs.[…]

• From WRDW (Georgia): “Ga. Senate passes budget with more for disabled, less for hungry kids”

[…]New Option and Comprehensive Support waivers pay for in-home supports, including help with daily care, transportation and job coaching. […] The Senate moved its budget changes with a unanimous committee vote Wednesday, advancing a nearly $39 billion plan for the next fiscal year. Senate budget chair Blake Tillery said the proposal includes about 1,200 new NOW/COMP waiver slots, even though the waiver waiting list still tops 8,000 people.[…]

• From The Telegraph (U.K.): “One in eight parents now reports their child is disabled”

One in eight parents now says their child has a disability as new data suggests behavioural issues are driving up Britain’s benefits bill.

[…]This has almost doubled since 2015, when roughly 7pc of parents said their child had a disability, according to the department’s closely-watched Family Resources Survey (FRS).

It also comes amid a sharp increase in young people being diagnosed with behavioural issues as well as autism and ADHD.[…]

• From ChildTrends: “More Than 1 in 4 Children and Youth in Foster Care Have a Special Health Care Need”

More than one in four (27%) children and youth (birth to age 21) in foster care are reported to have a diagnosed Special Health Care Need (SHCN), compared to 21 percent in the general population, according to Child Trends’ update to analysis originally completed in 2020. Among children and youth in foster care with an SHCN—irrespective of age—the two most common SHCNs are “emotionally disturbed” (57%) and “other diagnosed SHCN” (59%). […]

• From FOX26: “FOX26 story sparks donations for 22-month-old special needs child”

FRESNO, Calif. (FOX26) — A developmentally challenged girl will soon have access to critical mobility equipment after FOX26 News shared her story and the need for donations.

• From WBUR: “My twin brother was disabled, but I don't consider myself a 'glass child'"

March is Cerebral Palsy Awareness Month and Developmental Disability Awareness Month, but as the twin brother of Danny, who had severe cerebral palsy and intellectual disabilities, I never need the reminder.

[…]A few years ago, a student asked me if I had “glass child syndrome.”

[…]Until I heard the term, I thought growing up with Danny had made me a less selfish and more mature person.

[…]It seems to me that many siblings identify with the term because they were taught to suffer in silence. The glass child concept names a pain that they could finally voice.

[…]But the more I read, the more I worried that the glass child metaphor was deeply problematic for disabled people, their siblings and their families. […] It pathologizes special needs families.[…] in an America that often keeps our special needs families in a state of perpetual crisis as they attempt to navigate under-resourced social support, medical and educational systems, so-called glass child syndrome risks equating systemic societal failures to “bad parenting.”[…]

• From Psychology Today: “What Parents Need to Know About Mental Health Crisis Care”

[…]Approximately one in five fatal police shootings in the United States involves someone with a mental illness. Ryan [Gainer, an autistic child killed by police in California] was also Black, and Black children are six times more likely to be shot to death by police than white children. Disabled children—especially those who are autistic, neurodivergent, or in psychiatric crisis—are disproportionately at risk.

[…]As a child psychiatrist, I don't default to 911 or the ER. My approach centers on keeping children at home, where their families—not police or hospital staff—can care for and monitor them, with my medical support.

[…]If there is any chance police may come to a home during a crisis, I also advise clearing out gardening tools, kitchen knives, scissors, and any other household items that could be perceived as weapons. Ryan Gainer was holding a garden tool. Many people in mental health crises hold objects—not necessarily to harm anyone, but often because they are terrified.[…]

• From EuroMaiden Press: “She disappears as a person. Ukraine's first study of 160,000 mothers of disabled children”

[…]That mother is one of 609 surveyed for Strong Moms, the first comprehensive study of Ukrainian mothers of children with disabilities, released on 25 March by the NGO Epiprosvita foundation. Nobody had studied this demographic before. The findings explain why.

Ukraine has roughly 160,000 children with disabilities and no working system to help them or their families. That means 160,000 mothers are full-time carers—often with no respite, money, partner, educational, or social support. 15% contemplated self-harm or suicide within the last two weeks. 70% get zero hours away from caregiving. Zero. 45% have moderate or severe anxiety, 40% have symptoms of depression, and over half are burned out to the brink of exhaustion.

“The findings are heartbreaking. The situation is very, very dire,” said Niya Nikel, mother to disabled 7-year-old Eva and one of the report’s authors.[…]

• From JAMA: “Parent-Reported Chronic Pain in Children With and Without Developmental Disabilities”

[…]In this survey study of 263 168 children from the 2016-2023 National Survey of Children’s Study, the prevalence of parent-reported chronic pain was higher in children with any disability than in those without. The association was more pronounced in children having parents with lower parental education or income and in those who experienced more childhood adversities.[…]

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. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

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Greetings from Seattle!

I joined the fine folks above to speak at the Rare Disease Fair on Friday about employing family caregivers.

Please check out our sign-on letter asking the Trump administration and Congress to change policies and laws to make family caregivers employable by default — instead of through a complicated and wasteful waiver process. This simple change would only require deleting 10 words from federal law and allow disabled children and adults full access to the home care hours they have long been promised.

Story time.

During this trip to Seattle, we visited family and then took the long way back to our hotel via ferry. As I’m sure many of you can relate, my son (pictured above) had a meltdown at the exact least convenient time — right as we were paying the toll and getting on the ferry. The meltdown set off his twin, so my husband took him out and they walked on.

It was one of those times when we as medical mamas just keep our heads down and keep going forward, one step at a time. I gave him attention when I could, and got through the process to get us on the boat in a way that we could get him calmed down and out of the van near an elevator.

We got up to the passenger deck and headed to get popcorn — his favorite. The snack shack was a mass of bodies. We snuck through as best we could with the power chair and grabbed a bag. Then, I turned around to try to make sense of where the end of the line might be.

A guy in Seattle Mariner’s gear standing in line directly in front of us spoke up: “So, what I want you do to is to go around these folks and head to the front of the line and just pay there.” He spoke like a staff member. But I took another look at the baseball gear and hesitated. He doubled down: “Yeah, just tell ‘em me and this guy” — he jerked his thumb at the guy behind him, who laughed but then agreed immediately — “said it’s OK.”

So I laughed and said I would try it. We got to the front of the line and told the cashier the crowd wouldn’t let us queue up and the next person in line took one look at the power chair and said: “Oh, yeah. Totally.” We paid in a few seconds and a stressful ordeal was suddenly over.

It’s moments like these. Such small gestures, such minor inconveniences to them, but it is such a huge thing for us. That guy couldn’t have known what we had just been through, the way we needed a break. It just took one guy speaking up and everyone just reorganized to be kind and helpful.

Moments like those are why I rail against our disability systems so much. Because I see the good in people. I see how quick and easy it could be to do the right thing.

When we relate to each other at human speeds, at a human level, the answers are obvious.

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Medical Motherhood’s news round up

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

Editor’s note: For those who missed the last issue, I asked readers if they preferred shorter snippets of more stories (if available) or my usual curated longer snippets of three to four stories. The response was pretty overwhelmingly in favor of shorter snippets of more stories. So, I’ll try that for a while.

• From Idaho Capital Sun via KMVT: “Idaho families can’t find caregivers for kids with disabilities. Lawmakers won’t consider a fix”

An Idaho Republican legislative leader signaled he won’t consider a bill to reinstate a program that paid family members to be caregivers for loved ones with disabilities – because it would cost money during a tight budget year.

[…]Rep. John Vander Woude, a Nampa Republican who chairs the House Health and Welfare Committee, which typically handles health care legislation, said the bill to reinstate the disability caregiver program didn’t have a chance this year because it could’ve cost $30 million.

[…]“These families have documented their extensive efforts to try to get (caregiver) agencies to come. Nobody will come,” [House Minority Leader Ilana] Rubel said. “They can’t leave the home. They are facing financial ruin. And it’s appalling to me that we’re doing nothing to help them.”[…]

• From AARP: “Family Caregivers Account for $1 Trillion in Essential Care”

[…]If family caregiving were counted as a formal work sector, it would rank among the largest and most valuable labor forces in the domestic economy. Yet many caregivers go unpaid and often have to leave full-time jobs to care for aging relatives or loved ones. ​​

[…]Since the last “Valuing the Invaluable” report, which was released in 2023, caregiving demands have intensified. Family caregivers now average 27 hours of care per week, and 57 percent are in high-intensity roles, an indication that more are taking on complex medical tasks once handled by direct care and health care professionals.[…]

• From Flatwater Free Press: “Nebraska seeks to end retroactive Medicaid coverage. Hospital leaders say it will have a ‘disastrous’ impact.”

From her post in the neonatal intensive care unit at Children’s Nebraska, Dr. Ann Anderson-Berry sees some of Nebraska’s sickest and smallest patients.

It’s a devastating and unexpected end to a pregnancy, where the baby’s survival is often in question. For parents who rely on Medicaid, the government insurance program for low-income and disabled Americans, filling out the pages of paperwork to get their newborn covered is rarely top of mind.

[…]Those families — and other Medicaid-eligible patients seeking emergency care — have long had a grace period to apply, because by law, Medicaid would go back and retroactively pay for three months of care before the application.

[…]Nebraska’s Department of Health and Human Services is now seeking to end that retroactive coverage altogether.

• From Portland Press Herald: “Maine’s early childhood intervention system was broken. Schools are taking over.”

Fifty school districts have already assumed control of preschool and pre-K special education from the state and many more will follow suit in the fall. Although challenges persist, district leaders say the shift has benefited students.[…]

• From Frontiers: “Quality of life and emotional distress among primary caregivers of children with intellectual disabilities: a comparative study in China”

[…]A total of 217 primary caregivers of children diagnosed with ID were recruited from Jinzhou Kangning Hospital between January and December 2023, and 141 caregivers of children without ID from the same region were recruited online.

[…]In the context of family caregiving in China, caregivers of children with ID experience poorer QOL and greater emotional distress than caregivers of children without ID. These findings support the need for accessible psychosocial support and family-centered services, and for longitudinal research to clarify temporal pathways.[…]

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. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

Follow Medical Motherhood on Facebook, Bluesky, X, TikTok, Instagram or Pinterest. Visit the Medical Motherhood merchandise store.

Readers, I have a question for you.

In my news round-up, I have consistently found three to four high-quality, important, relevant, illuminating, uplifting or otherwise shareable stories relating to disabled or neurodivergent children every week for nearly five years.

This week is different.

Because of the massive changes resulting from the One Big Beautiful Bill Act (H.R. 1) — and the charges of fraud, waste and abuse in the system — Medicaid and disabled children’s services are in the news in a way I’ve never seen before. When I finished my review of sources, I had not three but NINE stories that felt worth sharing this week.

So, I’m shaking up the news round-up this week and I’d like to know what you think. My goal for this publication has always been to get critical information to a community of people who have very little time and energy. I want to curate stories so that you can get a glimpse of the policy landscape at a national and global level, while juggling all of your other (numerous) life responsibilities.

So my question to you: If the stories are available, do you prefer this longer list of shorter clips or is it more helpful for you to see a fuller picture of the most important three stories?

Let me know in the comments or simply reply to this email.

Leave a comment

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Medical Motherhood’s news round up

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

• From Health Affairs: “Unfounded Fraud Allegations Threaten Vital Medicaid Home And Community-Based Services”

[…]Everyone would agree that, just as is true for all public and private health insurance programs, fraud prevention is essential in Medicaid, which finances care for more than 80 million Americans and accounts for nearly one-third of total state expenditures.[…]

[…]withdrawing support for HCBS and pursuing sweeping structural changes without clear evidence of systemic fraud jeopardizes services that have become foundational to our country’s modern long-term care system.

[…] If HCBS is retrenched under the banner of fraud prevention, the likely fiscal outcome is increased institutional spending—something which would cost far more than any purported savings from new efforts to reduce fraud.[…]

• From Illinois State University: “‘Locked Inside’ forum sparks urgent call to end harmful school restraint and seclusion”

[…Dr. Charles] Bell’s newly released book, “No Restraint: Disabled Children and Institutionalized Violence in America’s Schools,” reveals that U.S. public schools use restraint and seclusion practices far more frequently than federal data shows, which is over 100,000 students annually.

Drawing from interviews in 15 states, Bell confirmed significant underreporting of these practices, and states like Texas have been caught underreporting the number of students they’re restraining.[…]

• From CPR News (Colorado): “Impact of state budget cuts gets real as lawmakers start trimming Medicaid programs”

The state’s powerful Joint Budget Committee voted Thursday to make cuts to Medicaid caregivers and reduce services for Coloradans with developmental disabilities to help fill a massive budget gap.

The decision was expected, as Medicaid continues to take up a larger chunk of the state budget. The full Legislature will have to approve the cuts as part of the overall budget, but the votes mark a significant step in the budget-writing process.[…]

• From WMAR 2: “Maryland's disabled community rally for lawmakers to avoid funding cuts to services”

[…]The demonstration came as $150 million in cuts to the Developmental Disabilities Administration are expected to move forward. Those who rely on the services say the reductions could have devastating consequences for their daily lives.[…]

• From Boston Herald: “State Auditor’s office uncovers another $4.4M in public benefits fraud”

Massachusetts state Auditor Diana DiZoglio’s office has uncovered another $4.4 million in public benefits fraud, including $2.4 million in SNAP fraud, $1.7 million in MassHealth and Medicaid fraud and more ranging between July 1st and December 31st — the first two quarters of Fiscal Year 2026.[…]

• From The Times: “Disabled children were given £500 each. Why is it so hard to access?”

[…]Child trust funds (CTFs) were a type of savings account set up by the government in 2005. Children born between September 1, 2002, and January 2, 2011, were given up to £500 each by the Treasury, and they could cash it in when they became an adult by filling in a form.

It was only when the first account holders began turning 18 in 2020 that families began to point out that there was a problem for those with learning disabilities.

[…Mum Claire] Stockton said: “I didn’t realise how difficult it would be to get his money, I was very naive. I filled out at least thirty pages of forms and there were around forty emails and endless phone calls with the court.”[…]

• From The Conversation: “Do dads of disabled children do enough? Kenya study points to misunderstood ways of caring”

[…]In many African countries, fathers hold decision-making and financial authority within families. This gives them strong influence over children’s schooling.

But when a child has a disability – such as Down syndrome, epilepsy, autism or other conditions that significantly affect learning and daily functioning – a father’s involvement often shifts in complex ways.[…]

• From Disability Scoop: “Adult-Size Changing Tables To Be Required At Major Airports”

Many airports will soon be required to provide changing tables for adults with disabilities. Now federal officials are looking for input on how to go about implementing the new mandate.

Under the 2024 FAA Reauthorization Act, all medium and large airports seeking federal airport development project grants must have at least one private universal changing station in each terminal starting in 2030.[…]

• From The Hour: “CT advocates support bill for more transparency in DDS complaints of abuse, neglect”

After the release of a [Connecticut] state Department of Developmental Services report that showed the agency received more than 4,000 complaints of abuse and neglect, including 15 deaths, of developmentally and intellectually disabled individuals in 2024, advocates and parents are supporting a proposed law that would call for greater transparency and more training for staff.[…]

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. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

Follow Medical Motherhood on Facebook, Bluesky, X, TikTok, Instagram or Pinterest. Visit the Medical Motherhood merchandise store.

Congressman Brett Guthrie, the Republican leader of the committee that governs Medicaid, said this week that fraud shouldn’t be a partisan issue.

I would agree with that. Fraud is bad. Wasting taxpayer money is bad. Abuse is bad.

As a recent letter from Guthrie’s committee, the U.S. House Energy and Commerce Committee, put it, “Every dollar stolen from the Medicaid program by fraudsters is taken from children, pregnant women, the elderly, and people with disabilities.”

The E&C committee (as it’s called on Capitol Hill) sent letters like that to 10 states this week, including my own, putting their Medicaid programs under a microscope.

As I read the nine-page letter, my heart sank.

The congressional letter asks Oregon to provide extensive information about fraud risks in its Medicaid-funded programs, with particular attention to Home and Community-Based Services, Consumer-Employed Providers and Applied Behavior Analysis programs. They consider these “high risk.” Those are the very programs that allow disabled children and adults to live at home rather than institutions.

Those of us with these services understand intimately that we already live inside a system built around proving eligibility over and over again. In many American disability households, managing Medicaid compliance is an unpaid part-time job.

• We document caregiver hours.

• We submit medication records.

• We undergo eligibility assessments.

• We justify equipment (again and again).

• We coordinate with doctors, specialists and therapists.

• We track and report changes.

• We respond to audits and paperwork requests.

• We appeal decisions with even more extensive documentation.

Meanwhile, we are still waking up at 2 a.m. to reposition a child with cerebral palsy, managing seizures, coordinating therapies, and trying to hold together a household built around complex medical needs.

Disabled people BY DEFINITION have less time and energy in their day. And yet our society and our public assistance programs ask them to spend time and energy proving their need and their worth over and over and over again.

All this for conditions that any doctor could tell you are lifelong.

In a thousand ways, on a thousand different days, we are forced to answer the question: Do you deserve it? Do you deserve it? Do you deserve it?

When policymakers start talking about “program integrity,” many disability families know that means they will soon have to jump through even more hoops. And we do. Because we are NOT criminals, even though they often treat us that way just for needing help.

The people committing millions of dollars in Medicaid fraud are not families caring for disabled children in their living rooms. Fraud rings are sophisticated operations involving billing schemes, shell companies, or organized networks exploiting loopholes. And our existing fraud detection systems work. We find them. We prosecute them. We put a stop to it.

Fraud prevention is important, but we must do it in a way that remembers who the system is ultimately supposed to serve.

Perhaps this time will be different. Perhaps they really will only catch the bad guys and leave the rest of us alone.

But even in my short time in Special Needs World, I’ve seen how disabled people — and those who care for them — somehow get fewer and fewer dollars and more and more work to do. Meanwhile, scores of new well-paid jobs are created for auditors and bureaucrats to push paper back and forth.

That’s the waste the E&C committee should be trying to prevent.

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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: “Federal Autism Panel Cancels Meeting Without Explanation”

For the first time in over a year, a key panel tasked with helping to direct nearly $2 billion in federal autism funds was supposed to meet, but now the gathering has been abruptly called off and it’s unclear why.

The U.S. Department of Health and Human Services said that a meeting of the Interagency Autism Coordinating Committee, or IACC, that had been planned for March 19 would be canceled. The agency did not respond to questions about why.

[…]The delay comes as the panel, which traditionally drew little attention, is now facing intense scrutiny. In January, Secretary of Health and Human Services Robert F. Kennedy Jr. announced a new slate of 21 members, including several known for promoting the discredited idea that autism is linked to vaccines or advocating for treatments that lack evidence.

[…]Alarmed by the shift, the Autism Science Foundation and the Coalition of Autism Scientists — a group of more than 300 researchers in the field — said last week that they would establish a competing panel dubbed the Independent Autism Coordinating Committee, or I-ACC.

[…]Jackie Kancir, executive director of the National Council on Severe Autism, said many members of her group advocated for greater attention to the needs of those with profound autism when the Autism CARES Act was renewed in 2024. More recently, they submitted public comments to the IACC and were eager to see how the remade committee would address their concerns.

“Families — already holding the weight of safety nets that have systematically collapsed upon their shoulders — sacrificed and exerted great energy into advocating for improvements to the Autism CARES Act of 2024. Fifteen months later, they are still waiting for the first public meeting of IACC to hear how — or if — their efforts had a meaningful impact,” Kancir said. “The committee charged to direct nearly $2 billion in autism research funding must be expected to show up also, without delay.”

• From KMVT 11 (Idaho): “Budget cuts, disabled children’s care bill among key issues in eighth legislative week”

The Idaho Legislature is entering the final stretch of its session with a sine die target of March 27, as the Joint Finance Appropriations Committee works to set budgets amid a funding shortfall.

House Minority Leader Rep. Ilana Rubel, D-District 18, said lawmakers are overlooking available solutions to the budget problem, including revisiting the school choice tax credit passed last session.

“There’s such an obvious solution sitting right there and for really arbitrary reasons we’re being told you can’t use that obvious solution,” Rubel said. “It’s like you’re dying of thirst there’s a big cup of water sitting right there and they’re saying no you can’t drink that cup of water you’ve gotta go try to distil something out of the muddy swamp if you want to get a drink.”

[…]The budget constraints are also affecting legislation. Rubel pointed to families of severely disabled children as among those impacted.

“The state’s too broke we don’t have any money too many tax cuts you know voucher program for private school tuition that there’s no money left in the bank for these families of disabled kids which is really disturbing,” Rubel said.

Rubel has been working on House Bill 807, which would reinstate some caregiver compensation for families of severely disabled children.[…]

• From CNBC: “Lawmakers to introduce bill strengthening federal anti-poverty program: It’s ‘a critical lifeline,’ Warren says”

A bipartisan group of Washington, D.C., lawmakers plans to reintroduce a bill on Thursday that would update a federal anti-poverty program that millions of Americans rely on to provide for their basic needs.

Supplemental Security Income is a federal program that provides monthly benefits to adults and children who are blind, disabled or age 65 and older who have limited income and financial resources. Approximately 7.4 million Americans receive SSI benefits.

The forthcoming bill, called the Supplemental Security Income Restoration Act, would expand and strengthen SSI benefits at a time when everyday costs are increasing, bill sponsor Sen. Elizabeth Warren, D-Mass., said in a statement.

[…]In 2026, the maximum monthly SSI payments are $994 for individual beneficiaries and $1,491 for eligible married couples, according to the Social Security Administration. That amounts to almost $12,000 per year for individuals and $18,000 per year for couples, according to the agency.

Many individuals who are on the program have severe mental, physical and cognitive disabilities that limit their ability to work, said Stephen Nuñez, director of stratification economics at the Roosevelt Institute.

[…]SSI recipients are currently limited to $20 per month in non-employment income, such as Social Security benefits or a pension — an amount that hasn’t been adjusted since 1974. If income is higher, the Social Security Administration may reduce benefits or restrict eligibility.

That threshold would be updated to $158 per month under the new bill, according to the text CNBC reviewed.

Another provision proposes adjusting another threshold, the earned income exclusion, that currently makes it so an SSI recipient’s first $65 in earnings does not count as income — which was meant as a work incentive when it was set at that level in 1972.

The new bill would update that level to $512 per month.

It also calls for updating resource limits for beneficiaries — currently set at $2,000 per individual and $3,000 per eligible couple — that apply to certain assets like cash, bank accounts and investments. Those thresholds would be raised to $10,000 per individual and $20,000 per eligible couple, which the proposal says would better enable beneficiaries to save for emergencies.

All the new thresholds would be indexed to inflation and adjusted annually.

[…]Two former Social Security Administration executives — Andrew Biggs, senior fellow at the American Enterprise Institute, a conservative think tank, and Jason Fichtner, executive director of the LIMRA Retirement Income Institute, a research initiative within insurance trade association LIMRA — called SSI reform “far more cost-effective than fighting poverty through Social Security,” in a February op-ed published in The Hill.[…]

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