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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 AJMC: “DOJ Abandons Olmstead Defense as Texas v Kennedy Advances”

The federal government’s posture in Texas v Kennedy—a lawsuit over HHS’s 2024 update to Section 504 of the Rehabilitation Act—has shifted dramatically since June 2026, with the Department of Justice (DOJ) now effectively aligned with 3 states seeking to unwind the rule rather than defending it.^1,2

On June 18, 2026, the DOJ’s Office of Legal Counsel issued an opinion concluding that neither Section 504 nor Title II of the Americans with Disabilities Act (ADA) requires states to provide services in the “most integrated setting appropriate,” disputing the legal basis for what disability law calls the integration mandate.³ The memo does not carry the force of law on its own, but it sets the policy direction HHS and DOJ have followed since.[…]

• From The Hechinger Report: “States turn to parents to fill a home care workforce gap”

[…]Elliott’s needs are significant enough that she qualifies for Medicaid-funded care at home. But her parents struggled to find available workers to do the job. Even when they could find home care aides, they worried about the quality of the care; Kris said she once found one of Elliott’s aides drunk on the job. Eventually, Kris left her career as a program coordinator for a nonprofit that provides services for people with disabilities and took over her daughter’s care herself.

[…]At least 30 states are trying an unconventional solution to the acute shortage of home aides for children with complex needs: paying parents to care for their children. Elaborate care, whether provided by parents or others, is essential for these children to eventually be able to attend school and function in the community, according to the American Academy of Pediatrics.

[…]“I am a very highly qualified caregiver and I didn’t get this way just because,” [mom Toby Lunstad] said. “My child’s life depends on it. … This is valuable lifesaving work that is being done.”

Editor’s note: Toby Lunstad was also featured in the March 5, 2023 edition of Medical Motherhood.

• From THV 11: “‘We need help’: Arkansas moms beg governor, DHS amid years-long wait for important waiver”

Arkansas families are asking for help after spending months and sometimes years on a waitlist for an important waiver.

The Community and Employment Services (CES) Waiver allows disabled individuals to receive care in their community instead of an institution.

[…Mom Paige] McCammon tagged Governor Sanders in her viral post and said interactions with members of the Governor’s team have been disappointing.[

• From USA Today: “They're looking for a special needs school for their daughter. But no one will take her”

[…]Parents of children with disabilities often find themselves advocating to get their kids the support they need to thrive. While the vast majority of the 7.5 million special education students in the United States stay enrolled in regular schools, according to the National Center for Education Statistics, experts say some children can benefit from programs dedicated to students with disabilities. But because these programs are rare and many have years-long wait lists, some families are left with nowhere to go. Some students, like Charlotte, continue in the public school system while parents search for a solution. Others with more extreme behaviors are sent home with no educational pathway at all.[…]

• From K-12 Dive: “Special education access case appealed to Supreme Court”

Do state educational benefits carry over to students attending private schools? That’s the question the U.S. Supreme Court is being asked to review as they finalize their cases for the October 2026 term.

Two Massachusetts families are asking the Supreme Court to hear their challenge to a state regulation that allows their private school children to access public school special education services but only at a public school or a “neutral” location.

The families, whose children with disabilities attend Jewish day schools, said in their July 20 petition that the Massachusetts’ policy penalizes private school students who have a constitutional right to attend private schools but who want access to publicly funded special education services.[…]

• From The Washington Times: “Children disabled by illegal-immigrant crime dominate House hearing on sanctuary policies”

Parents whose children were permanently disabled in crashes involving unauthorized immigrant drivers gave impassioned testimony Tuesday on the human cost of deportation-proof “sanctuary” policies at a House Judiciary hearing.

[…]when Mr. Raskin said he acknowledged the anguish Marcus Coleman was living through after his daughter’s traumatic collision in 2024, the father batted down the gesture.

“I reject your guys’ sympathy. To be honest with you, there’s no way you guys are sorry,” Mr. Coleman told Democratic lawmakers at the House Judiciary subcommittee on Immigration Integrity, Security, and Enforcement.

[…]Mr. Coleman has advocated for the federal passage of Dalilah’s law, which would limit CDLs (Commercial Drivers Licenses) to legal residents and English speakers.

[…]Mr. Raskin prompted the Cato Institute’s top immigration scholar, David Bier, to talk about the jump in criminal migrant releases under the Trump-run ICE.

ICE data show that the agency has released 25,712 people with criminal convictions or pending criminal charges, and more than 2,000 with violent criminal records since January 2025.[…]

• From Florida Weekly: “Play Without Limits”

West Palm Beach has a joyful new place to play, explore and connect.

[…]“We are really excited about this project, because we do have so many children who have mobility issues. It brings them into play, an inclusiveness with other kids,” says Leah Rockwell, Director of Parks and Recreation, West Palm Beach. “And we also have parents with mobility issues as well, so they can now interact with their kids.”

The playground project was eight years in the making. It started with some seed money and was completed with support from the city’s Parks bond, which funded a portion of the project. […]

• From BBC (United Kingdom): “Parents of seriously ill children should get paid leave, says commissioner”

Parents of children with serious illnesses or disabilities should be entitled to paid leave from work, the children’s commissioner for England Dame Rachel de Souza has said.

She called on the government to introduce a legal right to 12 weeks of paid leave at 90% of normal pay in order to lift the “immense pressure” and lost earnings families face when a child develops a debilitating condition.[…]

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.

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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 19th: “For families of medically fragile children, a policy change threatens the care they need at home”

The Department of Justice asked a federal appeals court earlier this month to vacate its March decision in a long-running case about requiring medically fragile children in Florida to receive the care they need while living at home with their families. The news came as a massive blow to parents who had hoped the state would be forced to provide better support for their children.

The move comes two months after the Department of Justice’s Office of Legal Counsel released a memo declaring that it would no longer enforce a landmark U.S. Supreme Court case, Olmstead v. LC, which in 1999 established that people with disabilities have a right to live in ordinary communities rather than institutional settings like nursing homes or asylums. LC, better known to her friends as Lois Curtis, and her co-plaintiff, Elaine Wilson, got to move into an apartment instead of continuing to live in a Georgia state hospital. The women’s case changed the legal landscape for Americans with disabilities and their families.

In a June memo, the DOJ declared Olmstead unenforceable and said that states have no requirement to provide home and community care.[…]

• From Cato Institute: “(Analysis) Immigrants Are 24% Less Likely to Be Disabled Than US-Born Citizens”

In November 2025, the Trump administration began rejecting some visa applicants based on health problems, asking if applicants and their children have “disabilities, chronic medical conditions, or other special needs.” On Tuesday this week, the State Department ordered a pause on all immigrant visa appointments worldwide to better train consular officers on more restrictive guidance, enforcing these rules as well as others intended to exclude immigrants likely to use public benefits.

Although some immigrants do become disabled, this analysis finds that immigrants, legal and illegal, were 24 percent less likely to be disabled than the US-born population in 2024, and were less likely to be disabled at nearly every age regardless of immigration status. Their lower disability rate led to significantly less use of disability benefits, but even disabled immigrants draw on those benefits less than disabled US-born citizens.[…]

• From Disability Scoop: “States See Spike In Special Ed Complaints”

With major changes happening in Washington, families are increasingly turning to states to help resolve special education disputes.

Data collected from 33 states shows that written complaints related to special education are up nearly 48%.[…]

• From Hartford Courant: “CT residents say state agency practice is ‘unconstitutional.’ Don’t reduce our loved ones ‘to a number.’”

[…]The civil lawsuit, filed by Koskoff Koskoff & Bieder of Bridgeport, Feinstein Education Law Group, and the Center for Children’s Advocacy, is against the state Department of Developmental Services and Commissioner Elisa Velardo over the department’s denial of eligibility for services to disabled residents “on the basis of a strict intelligence quotient [IQ]” cutoff pursuant to state law, which the plaintiffs allege “arbitrarily deprives Connecticut residents of resources to which they would otherwise be entitled.”

As the cutoff is being applied, it is creating an “unconstitutional bureaucratic gap,” said attorney Luke Reynolds, of Koskoff Koskoff & Bieder. “They are denied services designed to help them.”[…]

• From Disability Scoop: “Federal Panel Adopts Overhauled Autism Plan”

A key panel approved a sweeping new autism agenda calling on the government to restructure its priorities and nearly double its investment in the developmental disability.

The Interagency Autism Coordinating Committee, or IACC, voted Thursday to adopt a new strategic plan, the first comprehensive update in more than three years.[…]

• From Seattle’s Child: “Autism Resources for Vietnamese Families in Washington”

[…]While there are dozens of resources for families with autistic children and those with developmental delays in Washington, Dr. Thanh Kirkpatrick, a pediatrician at Rainier Valley’s HopeCentral Clinic and executive director of the Vietnamese Family Autism Advisory Board (VFAAB), said: “There are so many barriers for the [Vietnamese] community.”

[…]Karen Yao, VFAAB family champion and a mother of an autistic boy, said many Vietnamese families don’t share their child’s learning delays with others.

“Many times they don’t want others to know they have a child with disabilities because people in the community might think the universe is punishing the family for something they did wrong,” said Yao.[…]

Around the world…

• From The Telegraph: “AfD pledge to send refugees and disabled children to separate schools”

Refugee and disabled children will be removed from mainstream education in the German state of Saxony-Anhalt if the far-Right Alternative for Germany (AfD) party wins the imminent regional election.

The AfD’s manifesto sets out plans for a major educational overhaul, which would decrease the number of comprehensive schools in Saxony-Anhalt. It states that the “inclusion experiment has failed and must be ended”.

Special schools (“Förderschulen”) would be expanded to better meet the needs of disabled children, it said.[…]

• From Irish Examiner: “Girl diagnosed as non-verbal autistic living in Dublin hospital since February”

[…]Marykate O’Donoghue, who was diagnosed as non-verbal autistic with a moderate-to-severe intellectual disability when she was five, has been staying at Temple Street Children’s Hospital since February after her parents ran out of money for her care.

[…]”We brought her to hospital because we couldn’t manage any more,” Maryjane told the Irish Examiner, adding: “Our child has been abandoned by the State.”[…]

• From The Straits Times (Singapore): “(Opinion) Child needed calm corner, but front-line staff’s response was unsupportive”

I applaud our national cultural institutions, including the Asian Civilisations Museum and the National Heritage Board, for introducing dedicated calm corners. However, our recent experience was a stark reminder of how easily well-intentioned spaces are undermined when front-line personnel act as subjective gatekeepers.

[…]Waiting for a child to experience a full, public meltdown before validating their distress fundamentally misunderstands invisible disabilities.

More critically, when an unqualified person questions a child who has proactively sought help, it risks crushing the very self-advocacy and emotional regulation we work so hard to nurture.[…]

• From The Herald Business: “Hyundai Motor delivers mobility aids to children with disabilities”

Hyundai Motor’s management and union held an event Wednesday at the Ulsan Comprehensive Welfare Center […and…] delivered customized mobility equipment to 48 children with disabilities — including those with brain lesions, physical impairments and intellectual disabilities — providing stroller-type wheelchairs, in-vehicle postural support devices, power wheelchairs, postural support chairs, front-and-rear walking aids and rear-support walkers.[…]

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 Disability Scoop: “Justice Department Backs Off Disability Rights Enforcement”

Federal officials are reversing long-held positions in multiple court cases on the rights of people with disabilities to access home and community-based services, fueling concerns of a return to institutionalization.

[…]Last week, the Justice Department told a federal appeals court in Florida that it’s changing its stance in a case involving the rights of children with complex medical needs to live and receive services at home instead of in nursing homes. The Justice Department originally brought the case against the state of Florida and an appeals court upheld an order earlier this year requiring the state to take a number of steps to improve community-based care for children with severe disabilities.

Now, however, federal officials say that the matter should be returned to a lower court and reconsidered. In particular, the Justice Department opposes protections for children who are at risk of entering institutions.[…]

• From NPR: “They grew up with disability rights. Now, they’re fighting to keep them”

[…]The siblings said they’ve always relied on each other for support navigating life as two blind kids, now adults. Cody, 27, lives at home with his parents, and Kaleigh, 23, is starting law school across the country.

[…]Both say there were, without question, many challenges growing up with disabilities. But the two of them are also part of the “ADA generation” — people who came of age under the safeguards of the Americans with Disabilities Act of 1990.

And in 1999, the year Cody was born, the Supreme Court handed down the Olmstead decision. It reinforced the ADA’s integration mandate, which says people with disabilities should get to learn, live and work in their communities rather than in institutions.

[…]Now, the integration mandate — and an entire system of community-based disability services that more than 8 million Americans rely on — are being challenged.[…]

• From California Health Report: “Analysis: Rights for People With Disabilities Are Under Attack, But California Can Protect Them”

Editorial note: This piece was written by Jenny McClelland, a California state chapter co-lead of Little Lobbyists. I am Little Lobbyists Oregon’s state chapter co-lead.

[…]on June 18, the Department of Justice issued a memorandum reinterpreting the Olmstead decision, arguing that it doesn’t create “a broad legal obligation to offer home- and community-based services,” according to the American Bar Association. “Although not binding on courts and without the force of law, the memo is likely to guide Executive Branch agencies, shaping federal enforcement priorities and substantially narrowing the government’s approach to investigations” related to disability issues, the association wrote in a July analysis.

As a mother of a disabled child, I’m terrified of what this could mean for kids like my son.

As a Californian, I want my state to step up to protect the right for kids with disabilities to get care in their own homes. California needs explicit, enforceable state laws that codify the Olmstead rights and make it clear that kids with disabilities belong at home with their families.[…]

• From The Washington Post: “A mother has spent years caring for her special-needs child. The toll quietly grew.”

[…]Family caregivers — who provide ongoing support for children or adults with chronic, disabling or serious health conditions — now number roughly 63 million Americans, up from 43.5 million a decade earlier.

[…]Together they provide countless hours of unpaid or modestly reimbursed care each year, work that would cost hundreds of billions of dollars if replaced by paid labor.

[…]But decades of shifting norms around caregiving have given rise to millions of new caregivers who are suffering elevated rates of depression, anxiety, burnout and suicidal ideation, as well as a range of physical conditions.

Only recently has the toll of caregiving begun to register as a public health problem in its own right.

[…]The United States has steadily moved away from housing people with disabilities in large institutions and toward a model centered on families and community life. The shift, which accelerated in the 1980s and 1990s, represented a profound change that allowed people who once would have spent much of their lives segregated from society to be part of their communities.

There was the promise of government support: respite care, behavioral services, trained aides, accessible schools and robust community programs that would make family-based care sustainable. But today many of those systems remain fragmented, understaffed or difficult to access. Families became the foundation of the new model, and things haven’t turned out well for many of them.[…]

• From Charlotte Observer: “NC struggles to support disabled students. Here’s how experts say we can fix it”

North Carolina has fallen short in providing adequate services to its disabled students, the federal government ruled last fall.

[…]Experts told the Observer funding and staffing shortages present major challenges to providing exceptional children’s services, North Carolina’s name for special education. They said reforms to the state’s funding model — like giving more funding to schools with students who have more complex needs — and making the appeals process easier for parents could offer a better way forward.[…]

• From Florida Phoenix: “Why does Florida spend so much money on treatment for children with autism and special needs?”

Florida in the past two years has spent more money than any other state in the nation providing a therapy called applied behavior analysis (ABA) to children with special needs including autism — $6.57 billion between 2023 and 2025.

[…]Indiana ranked a distant second to Florida, spending $1.65 billion over the same two years. North Carolina ran a distant third, at $1.53 billion.

[…]Nicole Grabner is a disabled veteran and mother of two children with autism who drove four-plus hours from her home in Brevard County to Tallahassee to tell the task force she’s worried the cumulative changes are hurting Florida families who, she says, already are facing “agonizingly long waitlists” just to be approved for ABA.[…]

• From The Des Moines Register: “LATLC’s 10th Annual Great Tryke Giveaway Provides Adaptive Tricycles to Children with Disabilities”

Los Angeles Trial Lawyers’ Charities (LATLC) held its 10th Annual Great Tryke Giveaway on Saturday, August 15, bringing together trial attorneys, volunteers, families and community partners to provide adaptive tricycles to children with physical and developmental disabilities.

The annual event, held at Bancroft Middle School in Long Beach, is a partnership between LATLC and Orange County Trial Lawyers’ Charities (OCTLC). Together, the organizations purchase and present customized adaptive tricycles that are fitted to the individual needs of each child.[…]

• From the BBC: “The boxing coach on a mission to help disabled children

A builder-come-boxer whose video of him training his autistic brother went viral has gone on to open a gym dedicated to helping people with disabilities.

[…]Soon after, he had 100 people on a waiting list so decided to make it his full-time job.

[…]“I knew I had to put everything into helping people and it worked out great,” he said.

“There should be more places nationwide, allowing people with disabilities into a place to feel welcome. That is lacking.

“I’m trying my hardest to make a place where children feel comfortable, confident and like they can be themselves here.”[…]

• From NTV Uganda: “PRESIDENTIAL CEO RUN
: Hundreds participate to support children with disabilities”

Hundreds of people in [the city of] Entebbe took to the roads to participate in the annual Presidential CEO Run, which took place this morning at Coco Beach, Entebbe. According to Entebbe Mayor Fabrice Rulinda and State Minister for Sports Peter Ogwang, the run is intended to raise funds towards the construction of a [classroom] facility for children with disabilities at Welfare Primary School.

At least 200 children from less privileged backgrounds are cared for at the school, but adequate shelter remains one of its key challenges.

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 WRTV (Indiana): “‘It’s just devastating’: Families with disabled children say state kicked them off Medicaid”

[…]Some Indiana families with disabled children say they are being kicked off their health insurance through Medicaid.

[…]On June 1, the family was notified by the Indiana Family and Social Services Administration (FSSA) that Sammy was kicked off Medicaid, which also impacted his waiver.

[…]Trisha says the state kicked her son off Medicaid, saying she did not meet the income requirements. Something she says doesn’t make any sense because parental income is usually disregarded with the waiver.[…]

• From Arizona Mirror: “Audit faults Arizona for unenforced limits on paying parent caregivers”

More than a year after new regulations were signed into law, a state program that pays parents to be caregivers for their developmentally disabled children still hasn’t implemented required guardrails meant to rein in skyrocketing costs. State auditors said that the delay has cost Arizona hundreds of millions.

[…The state’s Medicaid program, called Arizona Health Care Cost Containment System or AHCCCS] disagreed with all of the audit’s findings, while the Arizona Department of Economic Security […] disagreed with some findings and agreed with others.

[…]In her audit response, [AHCCCS Interim Director Roberta] Harrison wrote that the 40-hour per week cap on parent caregivers was not intended as a cost-cutting measure.

“Regardless of the caregiver, it is important to recognize that assessed services in excess of 40 hours are still covered for the minor child by a non-parent provider because the services were determined to be medically necessary,” she wrote. “…When a parent provider is capped at 40 hours, the balance of the member’s authorized hours is delivered by a non-parent direct care worker. The State’s obligation to cover the authorized service does not disappear.”[…]

• From AP News: “How lightweight bamboo wheelchairs are helping Kenyan children with disabilities”

A charity in Kenya is helping children that rely on a wheelchair get access to one using a novel idea. Bethany Kids pays farmers for locally sourced bamboo which is used to create prototype wheelchairs at workshops by technicians also funded by the charity.

• From Disability Scoop: “Feds Urge States To Adopt New Rules For Autism Therapy”

[…]The Centers for Medicare and Medicaid Services issued a 173-page toolkit early this month spelling out a series of recommendations for states as they consider policy changes related to coverage of applied behavior analysis services.

The document advises states to limit use of telehealth and reconsider how many hours of therapy are warranted each week and how much consecutive therapy can be billed without giving children a break, among other suggestions.[…]

• From CalMatters via Tuscon Sentinel: “Trump administration pushing to gut Head Start early education program for neediest children”

[…]The federal Office of Information and Regulatory Affairs posted a notice that it intends to “significantly reduce regulatory requirements” for Head Start, effectively stripping the program of the unique features that have defined it since its creation in the mid 1960s.

[…]One Head Start standard that could be especially costly to eliminate is disability screening. Identifying and addressing disabilities such as dyslexia early can reduce the need for special education later on, potentially saving thousands of dollars, Stipek said.[…]

• From BBC (Northern Ireland): “'When your child is dying you shouldn't have to beg for help'“

[…]Lila was severely disabled and her parents say they spent their daughter's entire life fighting for support for her life-limiting condition.

[…]Lila’s third birthday would have been on 1 August.

The family spent what turned out to be Lila’s final weeks of life filling in forms so she did not miss the deadline for applying for mobility [Daily Living Allowance] before her third birthday.[…]

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.

What a wild quarter it has been. And welcome to all of our new subscribers!

First off, I wanted to let everyone know that our cartoonist Lenore Eklund is inpatient with her daughter after a major cardiac event. Please send out prayers for healing and comfort for this amazing family. There won’t be a Where Is the Manual For This?! comic this month, as I’m sure everyone in our community can understand.

It is heavy news in what has been a heavy quarter on the national stage: the Department of Justice’s Olmstead memo, HR 1-related Medicaid changes already denying eligible people, and a new scorecard for children’s Medicaid services.

Week after week, Medical Motherhood tracks Medicaid cuts and technical denials, paid family caregiving, disability rights. We watch for local, national and international policy decisions that determine whether disabled children can receive the care they need at home, school or medical settings.

As a perk, I offer this quarterly peek behind the curtain of what I’m working on, how I think about this publication and what’s coming soon.

Paid subscriptions support the work of finding, explaining, and connecting that information — and keeping it available to every family who needs it. Right now, 56 paid subscribers help sustain this work. If you can afford $6 a month or $60 a year, will you help me reach 70?

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

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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 USA Today: “Inside the summer camp that functions like a pediatric hospital”

[…]For most of the year, campers’ schedules revolve around doctors’ appointments, surgeries and medical precautions. Some attend specialized schools or rely on full-time aides. Others have spent months in isolation because weakened immune systems make typical childhood activities dangerous.

But at camp, the word “no” is seldom heard. Paraplegic campers fly down ziplines. Children who use wheelchairs scale rock walls. For parents accustomed to constant caution, experiences like these once seemed impossible.

Each summer, roughly 450 campers attend one of four sessions at Camp Simcha [in New York’s Catskills mountains…]

• From Stateline: “As federal protections fade, disabled Americans fear a return to institutions”

Editor’s note: Jeneva and Rob Stone are state chapter co-leads of Little Lobbyists Maryland. I am one of the state chapter co-leads of Little Lobbyists Oregon.

[…] Jeneva Stone says the cuts in Maryland threaten her son’s ability to get the nursing and other services he needs to be able to live at home. She worries families like hers will be the first to face forced institutionalization.

“More and more burden falls on family caregivers to fill in the gaps, and that leads to unsustainable economic situations for families,” she said. “Once your job situation falls apart, your savings are gone, you’re faced with this ugly choice: I believe strongly in my son’s civil right to stay in his community, but I can’t keep a roof over his head.”

Everything feels uncertain, she said, as longstanding protections seem to be dissolving for her son and others like him.[…]

• From The New York Times: “The U.S. Relies on Family Caregivers. Millions of Them Are Kids.”

[…]A 2024 study in Rhode Island found that about 14 percent of the state’s students reported that their absences from school were because they had to look after someone. Nationally, teen caregivers are about 8 percentage points less likely to be enrolled in school at all.

Those caregiving students who remain in school tend to be less engaged and spend about 45 fewer minutes per day on educational activities; not surprisingly, they get worse grades. Caregiving youth also grow up to be adults with lower levels of education, even after controlling for socioeconomic status and other demographics.

Yet in many schools, no one is trained to identify caregiving as something that can add significant stress to a student’s life.[…]

• From Dayton Daily News: “More Ohio students have a disability: Schools, families face challenges”

The number of Ohio students with a disability is rising compared to before the pandemic, according to Ohio Department of Education and Workforce data analyzed by the Dayton Daily News.

This is creating financial challenges for districts and headaches for parents and children who have not received needed care, our reporting found.

[…]Dan Dyer, a Kettering resident whose daughter, Lou, has cerebral palsy, said Lou likely would not have survived if she’d been born just a few years earlier.

“There’s an ignorant comment of, ‘we didn’t have as many disabled kids when I was in school,’” Dyer said, noting that previously these kids would have been institutionalized.[…]

• From Fox 21 News (Colorado): “D49 faces lawsuit from disabled student’s family”

A local family filed lawsuits in state and federal court against El Paso County School District 49, alleging the district refuses to allow their 8-year-old son’s private nurse to accompany him to class. The family seeks a court order to permit the nurse, who is funded through Medicaid, to support the student’s severe medical needs during school hours.

[…Attorney Igor] Raykin, who has represented disabled children for nearly 15 years, said he has never seen a district refuse entry to a nurse paid for by external sources. “Literally all we are asking them to do is let somebody in the door,” Raykin said.[…]

• From The Free Press (Canada): “Meeting the needs of disabled Indigenous children”

[…]Many First Nations families, particularly in remote and northern communities, are faced with the choice of living in their home community with limited or no resources for their child with a disability or relocating to an urban centre to access necessary supports. This further disconnects families from family and community support, connectedness to shared values and teachings and a child’s right to a sense of belonging.[…]

• From Stateline via Nisqually Valley News: “Many states expanded care for children, older adults and workers”

Many states have made marked progress over the past two years in extending crucial care and benefits to children, workers and aging adults. But they will be hard-pressed to fill the void left by impending federal cuts to social services, according to a new analysis.

[…]It gave top grades to California, Oregon, New York, Massachusetts and New Jersey. The lowest rankings went to Alabama, Mississippi, Wyoming, Florida and North Carolina.[…]

• From RNZ (New Zealand): “Proposed disability support bill criticised as child poverty report highlights growing hardship”

An advocate for children with disabilities says families are skipping food to pay for essential items.

A Ministry of Social Development report revealed that child poverty is getting worse and that an estimated 210,600 children - roughly the population of Wellington City - were living in households below the poverty line.

[…]“In the past two Budgets this Government has already committed a record investment of $2.1 billion of additional funding into the disability support system.”

[Ministry of Social Development officials] were not aware of cases of people sacrificing food to fund care.[…]

• From The Star (Malaysia): “Autism care in critical need of support”

One in every nine persons with disabilities (OKU) recorded with the Social Welfare Department has autism, with the number of registered cases swelling by 17,000 in the past year.

Despite these rising numbers, Malaysia’s autism care remains under strain with a long wait for therapy and a shortage of trained professionals.[…]

• From The Dispatch: “Why Some Americans Want to Be Disabled”

[…]Disability has gone mainstream. There are disabled influencers who now command audiences of millions. […] More than anything, I appreciate how this content—which focuses on everything from accessibility issues to advocacy to the latest in assistive technology—has shifted the Overton window on disability’s presence in mainstream discourse, a welcome counterweight to TV and films that have woefully underrepresented disabled people.

[…]Personally, I don’t think it’s a coincidence that this is a relatively recent development. Social media has gifted us the ability to create our own à la carte realities. A lifetime of exposure to advertising campaigns and celebrity culture has effectively turned us into our own marketing departments, has conditioned us to internalize the idea that if we’re efficient enough, if we can optimize ourselves with the right metrics—likes, shares, views—if we can differentiate ourselves with some rarefied novelty characteristic that sets us apart in the digital panopticon, we too can cultivate our own “authentic” brands in the open marketplace of ideas. Societies built on manufacturing tended to exploit their workers. But in a postindustrial world, we increasingly exploit ourselves.

I wish I had the luxury of pretending to be disabled. Thankfully, my disability doesn’t define me, and that means any setbacks I’ve faced aren’t cheat codes for a personality. Adopting victimhood status as a personal branding campaign will never solve whatever underlying feelings of inadequacy or insecurity someone might have. Worse, commodifying disability trivializes disability, which doesn’t make the world an easier place for those of us who already have a hard time navigating it.[…]

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.

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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 Yakima Herald-Republic: “Parents worry Washington developmental disabilities program is about to get axed”

Parents of children with developmental disabilities fear the unexpected and potentially imminent elimination of a Washington state support program they’ve come to depend on.

As the state deals with budget troubles, Washington officials say the Parent to Parent program’s future isn’t guaranteed past August.

[…]Parents believe the program, costing about $900,000 a year, is invaluable, and can’t be replicated or recreated if state funding disappears.[…]

• From Sierra Sun Times: “Congresswoman Debbie Dingell Introduces the Childhood Disability Benefit Fairness Act”

U.S. Representative Debbie Dingell (D-MI-06) has introduced the Childhood Disability Benefit Fairness Act, a bill that would fix the issue where disabled adult children are denied crucial Medicaid and related medical benefits because they never received Supplemental Security Income (SSI) before becoming eligible for Social Security’s Childhood Disability Benefit (CDB).

“Individuals living with a disability already face too many barriers without arbitrary administrative hurdles getting in the way of essential healthcare.[…”]

• From Teeside Live (United Kingdom): “Mum enjoying success with debut novel inspired by own experience of raising autistic daughter”

[…]‘Overwhelming Love’, by Leanne Thomas, was released on July 17 and within days had reached number five in Amazon’s disability fiction charts. Leanne’s debut novel follows Tizzy Reeves, a single mum raising her autistic, non-speaking daughter.

[…]Speaking of the success of the novel, Leanne said: “I never expected it to go further than my own support circle, so to see it in the number five spot in such an important genre to me still feels unreal. My intention was to help other parents feel less alone.[…”]

• From Irish Examiner (Ireland): “More than 80% of disabled children requiring residential care placed in for-profit facilities by HSE”

The [Health Service Executive, the Irish government’s health and social services agency] has admitted that placing disabled children with private care providers “is not a strategy” after it emerged that more than 80% of such cases end up in for-profit residences.

The Irish Examiner has learned that of the 296 residential placements provided by the State for disabled children, 242 of them, or 82%, are provided by commercial operators.

[…]For profit care is typically associated with problems in terms of staff retention and workforces that are paid less than their statutory equivalent.

[…]Advocates say the use of such accommodation should be a last resort, suggesting that many such placements could be avoided if earlier and more consistent treatment is given to allow the children to stay in their own homes.[…]

• From USA Today: “My son has cerebral palsy and epilepsy. No one gave us a road map”

[…]Children like my son represent less than 1% of children in the United States, yet account for more than 1/3 of pediatric healthcare spending. Our calendar soon filled with therapies and specialist appointments across two children's hospitals. Every specialist added another appointment to that calendar. None told us how to wade through it all.

Research shows 68% of families of children with medical complexityreport unmet care coordination needs nationally, compared with 40% of families whose children are less medically complex.

[…]Our pediatrician referred us to the Early Start Program through California's Regional Center system, the state's early intervention program for infants and toddlers with developmental delays. That system serves nearly 500,000 people through 21 regional centers statewide, yet navigating it remained one of our biggest challenges.[…]

• From Boca Raton Tribune: “County Hospital Drops Disabled Children Therapy, Parents Scrambling”

Options for pediatric care in Palm Beach County have taken another hit, with the recent announcement that Baptist Health South Florida will stop offering rehabilitative care for disabled children and infants at its Boynton Beach hospital, a separate medical center nearby and its offices in Wellington.

The news comes months after Jupiter Medical Center, another nonprofit operation, announced an end to its inpatient treatment for children in February.[…]

• From Courthouse News: “Parents of disabled child ask 11th Circuit to revive $100M trust theft class action”

The parents of a disabled child urged an 11th Circuit panel Wednesday to overturn an order stalling their claims against companies they say were complicit in a Florida nonprofit’s scheme depleting funds from the child’s medical care trust.

[…]The nonprofit filed for Chapter 11 bankruptcy in 2024 after an internal investigation revealed co-founder Leo Govoni transferred money from trusts under the organization’s administration by issuing loans to companies he controlled.

The accounts of more than 1,000 of the center’s 2,000 vulnerable and disabled clients were partially or entirely drained.[…]

• From WMUR (New Hampshire): “Health officials say cuts to nursing aid for disabled children being reversed”

[…]Executive councilors are calling out New Hampshire’s Medicaid managed care organizations after families of children with severe disabilities came forward to report what they described as arbitrary cuts and reductions in covered nursing care.

“A 4-year-old with a progressive neurological degenerative disorder, uncontrolled seizures and G-tube dependency saw their nursing assistant hours reduced from 60 to 45 to 21 hours over six months,” said Executive Councilor Janet Stevens.

[…]Gov. Kelly Ayotte called the cuts to nursing care made by the MCOs "completely unacceptable."[…]

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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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.

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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.

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

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.