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.
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