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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 Oregon Public Broadcasting: “‘Could we have done something more?’ Bend school shooting spotlights pressures on families of children with special needs”

[…]The shooting has rattled the city’s sense of safety and resurfaced a long-simmering debate on how to prevent gun tragedies. But those working in the special needs community say it also underscores broader failures, and many wonder if the tragedy could have been prevented.

“Could we have done something different?” said Jenny Widder. She is the mother of a girl with autism who attended Silver Rail in the past, and works offering peer support to families. “And what did we miss?”

[…]Parents in Central Oregon and across the state have long advocated for more money for students with disabilities. In a state that struggles to adequately fund its schools, special education often gets further short-changed.

A number of states cap spending on special education, but Oregon has the lowest cap in the nation. Districts can only receive additional special education funding for up to 11% of students, even though about 15% of students have disabilities that qualify for that extra funding.[…]

• From The Oregonian: “An Oregon parent has never been prosecuted for a child’s mass shooting. Will Bend mom be first?”

[…]A dozen Oregon prosecutors, former prosecutors and defense attorneys, as well as a retired judge, told The Oregonian/OregonLive the same thing: That even in the absence of a specific state law holding parents criminally liable for the gun crimes of their children, the mother of the Bend teen shooter could be prosecuted under the state’s existing laws for homicide — if she glaringly ignored red flags.

[…]Legal experts interviewed by The Oregonian/OregonLive say they’re confident that the Deschutes County District Attorney’s Office will take into account whether the gun used in the Silver Rail Elementary shooting was properly stored, as well as what — if any — gun-safety education the teen’s mother ensured her son had.[…]

• From Disability Scoop: “Nearly 1 In 5 Public School Students Have IEPs Or 504 Plans”

A growing number of students in the nation’s schools have disabilities, new data shows, and they are more likely to experience restraint, seclusion and other discipline.

Students with disabilities account for 19% of the nearly 50 million children in public schools across the country, according to the U.S. Department of Education’s most recent civil rights data collection. […]

• From St. Louis Post-Dispatch (Missouri): “Parents ask state to investigate De Soto school district for special ed violations”

The parents of two Jefferson County students are calling on Missouri education officials to investigate the De Soto School District, saying it failed to provide their disabled children with the support they needed to stay in school.

[…]"We're hearing time and time again of families not trusting this district, going so far as to withdraw their children and sometimes homeschool children with disabilities who are not appropriately being served," [attorney Hopey] Fink said [of the complaint that could become a class action…].

• From NJ Spotlight News: “Ex-justice details how NJ courts fail disabled kids and their families”

New Jersey is still trapping families in special education court battles “well beyond” the legal time limit, according to a new judicial report, leaving scores of disabled children without timely services.

The preliminary findings from former state Supreme Court Justice Jaynee LaVecchia are in response to a 2019 federal class-action lawsuit against the state Department of Education.

[…]This is a long-running complaint in the special education community, where parents say their kids are denied reading help, language support or specialized aids for months or even years as their cases wind through the administrative court system. More than 800 legal complaints are filed annually in New Jersey, according to lawyers and state records.[…]

• From Disability News Service (United Kingdom): “Relationship and sex education failures put disabled pupils at risk of abuse, says new report”

Disabled children and young people are being placed at risk of abuse because they are missing out on “vital” relationship and sex education at school, according to a new report.

The research found “patchy” provision of relationship and sex education (RSE) for pupils with special educational needs and disabilities (SEND), which has been compulsory in schools in England and Wales since 2020 for those up to the age of 16.[…]

• From NBC Washington: “Kyle Kennedy, granddaughter of Robert F. Kennedy, dies at 42

Kyle Francis Kennedy, an educator and granddaughter of Robert F. Kennedy, died last month after suffering a severe spinal cord injury that resulted in long term paralysis and years of medical issues, a Massachusetts funeral home said.

She was 42.

[…]“Blessed with a formidable intellect, dry wit, and beauty, she will be remembered for her devotion to her children Conor, Josephine, and Declan, and her support for educational reform for disadvantaged children and for people living with disabilities.”[…]

• From USA Today: “Could Trump Accounts hurt benefits for children with disabilities?”

Trump Accounts, touted by the White House as a game-changer to get children on the path to building savings, can hurt their access to disability benefits as adults if parents aren't vigilant, financial and legal experts say.

Editor’s note: In case you missed it, I also wrote about this in the Oct. 11 edition of Medical Motherhood:

• From SageJournals: “‘A mother has to be strong!’: Narrating “strong motherhood” in China's online autism community”

[…]It was not until 2019 that a collaborative team of scholars from the United Kingdom and China reported a prevalence rate among the Chinese population comparable to Western countries, at 108 per 10,000 (Sun et al., 2019). With this new understanding, one can estimate that China's child population with ASD is close to 3 million, whose needs for policy and scholarly attention are urgent.

[…]children with ASD in China are not guaranteed equal rights to basic services such as education.

[…]Second, there is a notable scarcity of targeted services and support for autistic children, with an acute shortage of well-trained professionals and experts in diagnosis, intervention, and support

[…]Last, social stigma associated with ASD remains deeply rooted.

[…]In this context of limited availability of specialized services and social and public support systems, families constitute the primary—and often the sole—source of support for children with ASD, with mothers often taking the lion's share not only of daily management of the child's needs but also of navigating complex emotional, social, and institutional 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.

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 The Oregonian: “On school picture day, an Oregon community’s nightmare began”

The unspeakable horror began with the sound of shotgun blasts striking a pickup truck, shattering the quiet calm outside Silver Rail Elementary School in Bend early Thursday afternoon.

It ended only after a teacher inside a special needs classroom tried to wrestle the firearm away from a 16-year-old assailant as he slaughtered those in the room, and when a school parent who had pursued the teen fatally shot him.

The rampage unfolded in a matter of minutes, but left three children — ages 5, 8 and 11 — and a different teacher dead. It also added Oregon to a grim and growing list of states rocked by a fatal mass shooting at an elementary school.

A 7-year-old student and a third teacher were also wounded.

Police said Friday they were scouring for clues to understand what motivated the suspect, who himself was previously a special needs student at Silver Rail.[…]

• From Idaho Statesman: “‘It’s all on you.’ Idaho families with disabled kids endure hardships without key program”

It’s been over a year since Idaho ended a program that allowed parents and spouses to be paid for care they provided to their family members with disabilities. The Department of Health and Welfare terminated the Family Personal Care Services program in July 2025 after the agency said it found fraud and abuse, and didn’t have the staff or financial resources to administer it.

Last session, lawmakers introduced a bill to bring the program back with guardrails, but it never received a hearing.

Families told the Idaho Statesman that in the year since the program ended, they have struggled to pay for housing and bills, have had to take on night jobs and side gigs to make ends meet and have seen negative impacts on their children. Some said they feel like they are costing the state even more money now, after signing up for government assistance programs or relying more heavily on care that is billed at a higher rate, such as in-home nursing. The added stress has made it even harder to care for their medically complex kids. […]

• From ABC News: “Late 'Breaking Bad' star RJ Mitte remembered for cerebral palsy advocacy”

RJ Mitte is being remembered for his advocacy work for the disability community.

The actor, known for his roles as Walter White, Jr./Flynn in “Breaking Bad” and Campbell Bingman in “Switched at Birth,” died Monday at the age of 34, a representative for Mitte confirmed to ABC News.

Mitte’s “Breaking Bad” co-star Bryan Cranston said Mitte died by suicide.

Mitte was born with cerebral palsy, also abbreviated as CP, a type of motor disability that is estimated to impact about 2.4 per 1,000 children in the U.S., per the Centers for Disease Control and Prevention.[…]

• From WRAL: “Her son has serious disabilities. She believes she's the best person to teach him”

[…]It takes skill and patience to teach Will, who has autism and a neurological disorder that makes it difficult to speak. The Walters say they no longer trust their rural school system to educate him without restraining him or hurting him. Katherine Walter teaches him herself.

America’s public education system offers some of the world’s best services and protections for students with disabilities, guaranteed by federal law. But more parents like the Walters are abandoning their rights to those services. They say public schools are failing their kids and they’re better off trying to educate them at home.[…]

• From IdahoNews: “Adaptive ballet program expands opportunities for children with disabilities in Meridian”

For many children, joining a dance class is a routine extracurricular activity. But for families of children with disabilities, finding programs designed to meet their needs can be more challenging.

That’s what inspired Savannah Lehman to create LEAP Adaptive Ballet, a program that offers ballet classes for children with physical, developmental and sensory disabilities.

[…]"Dance is for everybody, if you have a body, you can dance," Lehman said. "I don't want them to miss out on anything, I want them to experience the full dance world."[…]

• From CBS News: “Sacramento man uses music and movement to help children with disabilities shine”

California spends billions of dollars each year on developmental services, including support for people with autism. But for many families, finding the right resources and programs can still be a challenge.

In Sacramento, one man is working to make a difference by creating a space where children can learn, perform and express themselves — all at no cost. And he does it in a bright red hot jalapeño suit.

[…]The idea began about a decade ago at Capitol Elementary, shortly after [Jahri] Turner graduated from Sacramento State and began working with at-risk youth. He noticed students retained more of what they learned when lessons were paired with music and movement.

[…Nia, the mother of three autistic children] said there are few resources available for children with disabilities, making Jahri’s World’s free performances particularly valuable.

“There’s hardly anything out here right now for the disabled, and for him to do it free of charge, [it] speaks volumes…” she said.[…]

• From Children & Young People Now: “Disabled children’s families face childcare cost and provision barriers”

[…]A YouGov poll of 1,001 parents and carers across the UK found 21% wanted more paid childcare. Among families wanting more childcare, 38% said it was too expensive, while 29% reported a lack of suitable provision.

Half of full-time carers said they would work more if suitable childcare hours became available. Across all parents raising disabled children, the figure was 26%.

The report also found 55% of respondents whose childcare did not meet any of their child’s needs reported negative impacts on their own wellbeing. Some 37% reported negative impacts on their child’s wellbeing. […]

• From Times Union (New York): “Parents in search of help for disabled children are leaving public schools”

[…] the number of disabled homeschoolers is on the rise statewide, following a trend that began nationally in 2019. Locally, the surge is happening in nine districts. A handful of big cities, suburban districts and rural schools have seen growth in the number of disabled children moving into homeschooling far outpace the growth of general education students who leave the same school district for homeschooling.[…]

• From KQED: “Enrollment, Discipline, Disabilities: 5 Things Civil Rights Data Says About Public Schools”

[…]The population of students with disabilities is on the rise, and boys make up a much bigger share than girls — nearly two-thirds — of these students. While the previous CRDC showed 17% of students had disabilities, the newest data show they made up 19% of all students enrolled in public schools. And they were suspended out of school at disproportionately high rates.

Losen says the lost days of school for these students don’t just mean they’re missing learning, it also means they may be losing out on key services they get during school, such as mental health counseling or physical therapy.

Disabled students are also among the least likely groups to be enrolled in Advanced Placement (AP) classes in high school. Losen says that’s a longstanding pattern, in part, because of assumptions that they can’t achieve at high levels. AP classes might not be the right fit for some students with intellectual disabilities, he says, but many students have disabilities that have little to do with their academic potential.

And Gopalan says these classes don’t just represent how much rigor students are exposed to. “These are all gateways to college, other opportunities beyond high school. And we see gaps in opportunity and access for students with disabilities.”[…]

• From Bar and Bench (India): “Supreme Court seeks State-wise data on regulation, standards of rehab centres for disabled children”

The Supreme Court on Thursday sought state-wise details on how rehabilitation centres for children with disabilities are regulated and monitored across India. The court asked the Centre to gather information from all states and Union territories on the standards in place, the authorities set up under the law, and the oversight mechanisms governing such facilities.

[…]The matter came up amid concerns over gaps in compliance with laws meant to regulate rehabilitation and mental health establishments for persons with disabilities.[…]

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.

From crisis to crisis! Some days feel like that. So very frustrating!

As this week’s comic shows, getting home from the hospital doesn’t necessarily mean the crisis is over. Sometimes there’s a new one waiting in the mail: Your child’s Medicaid is about to end, and no one seems able to fix it.

That’s why I’m concerned about the expanded Trump accounts for kids.

Rolled out in July as an opt-in program, these investment accounts offer $1,000 in federal seed money for U.S. citizens born in 2025–2028. Older children could have tax-deferred accounts too, but without that federal deposit. The idea is to help children save for the future.

Great idea.

The problem is how those savings interact with disability benefits — and who is responsible for making sure families don’t lose them.

On Oct. 1, the U.S. Treasury announced that every eligible child under 18 with a valid Social Security number now has a Trump account. Parents or guardians must claim the account to manage it, but the government has already opened it. Families cannot opt out of having the account created, and leaving it unclaimed doesn’t make it disappear. The account stays open, and any money in it remains invested.

There is an opt-out option, but according to the program’s account-closure guidance, it only stops future participation in donor gifts of stock. It doesn’t close the account or remove the money or stock already in it.

For families navigating disability services, an investment account isn’t always a simple gift. SSI and Medicaid eligibility pathways limit the assets a person can own. Not all Medicaid coverage has an asset test, but for people whose coverage does, saving for the future can put essential benefits at risk.

Congress created ABLE accounts in 2014 specifically to address this problem. They allow eligible people with disabilities to save without those savings counting against means-tested benefits. For SSI, the first $100,000 is excluded from the asset limit.

Trump accounts have a more limited protection. Social Security does not count them as an SSI resource before January 1 of the calendar year the child turns 18. Beginning that January, however, the available balance becomes countable and could put SSI eligibility at risk. Depending on the person’s eligibility pathway, Medicaid could be affected too.

There is a way to protect the money: Roll it into an ABLE account. But the special rollover is available only during the calendar year the child turns 17.

So now families have another account to track, another rule to understand and another deadline to meet — even if they never asked for the account and would rather decline it.

Why not build in lasting protection for disability benefits, instead of making families responsible for preventing another crisis?

I worry that once again this administration has not taken disabled children’s needs into… wait for it… account.

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: “Trump Accounts Could Put SSI At Risk”

Special savings accounts that recently debuted may be a boon for families, but experts warn that without careful planning, they could compromise access to disability benefits.

The newly created Trump Accounts, which became available in July, allow families to establish a tax advantaged investment account for their kids.

[…]However, experts are warning that the free money could come with a downside for children with disabilities.

[…] The law allows funds for children with disabilities to be rolled over from a Trump Account to an ABLE account, but only during the year in which the beneficiary is age 17.

[…Kathleen] Romig with the Center on Budget and Policy Priorities said the conundrum highlights the need for Congress to raise the SSI asset limit and to adjust the law to allow families to transfer Trump Account balances to ABLE accounts at any point.

• From NPR: “How the system failed us: Former foster youth tell their stories”

[…]Most children in foster care live with families, with relatives or with other foster parents. But about 10% of disabled kids in foster care live in group homes and institutions, compared to just 4% of those without disabilities.

An NPR investigation found children with disabilities, including physical and behavioral health disabilities, are the largest group that goes into foster care — and they have the worst outcomes.[…]

• From California Health Report: “Analysis: Children With Disabilities Have a Right to Health Services in School. Here’s a Guide”

[…]Disabled children have a right to a free and appropriate public education. I’m making an intentional choice to use the word “disabled” to talk about children who need care during the school day. Many families use words like “special needs” to talk about children with disabilities. But disability is a word that is defined by state and federals laws that comes with rights. When families ask school districts for accommodations that will make it safe for their child to attend school, they’re not asking for the school to do a nice thing — they’re asking for the school to demonstrate how they plan to provide a legally required service.[…]

• From Arkansas Democrat-Gazette: “Families of Arkansans with disabilities testify to state lawmakers about waitlist for in-home aid

Families of disabled Arkansans waitlisted for critical in-home services testified alongside officials from the state Department of Human Services at a legislative hearing Friday, expressing very different opinions on how the Community and Employment Support Waiver program is working.

[…David] Watson said when he found out that people on the waitlist could begin to receive supportive living services starting in January, “I got excited” and he immediately called Easter Seals.

The nonprofit said “they have no idea how that money will be implemented,” he said, so as of now [his daughter Mariah, who has been on the CES waitlist for nearly three years] still needs to be in the CES waiver program to get those services.

“She’s not a number, she’s my daughter,” Watson said, tearfully. “How do we build a system in which disabled Arkansans can actually get services?”[…]

• From USA Today: “A 7-year-old boy needs disability care. These parents united to help”

Surrounded by hundreds of other parents raising children with disabilities, Tamerah Cooper was no longer alone.

[…]Cooper joined the Little Rock rally Sept. 16 to demand state officials fully fund programs that allow people with disabilities to live at home as required by federal law. The Americans with Disabilities Act and a 1999 U.S. Supreme Court decision affirmed disabled people have a right to care that lets them stay in their community rather than being forced to live in medical facilities.

And yet, more than 2,400 people in Arkansas – and 650,000 nationwide – appear on waitlists for those Medicaid services.[…]

• From WKYT: “Kentucky families of children with disabilities say they’ve lost Medicaid coverage after federal changes”

Two Richmond mothers say their children with disabilities have lost Medicaid coverage following federal changes to the program.

[…Megan] Gammell said that after the federal spending bill pushed by the Trump administration passed last summer, she has had to fight to get her daughter’s coverage back three times.

[…]“She was on life support, and I remember the social worker coming and talking to me and telling me that her insurance had dropped her. We didn’t think that she was going to survive, and they were dropping her due to Medicaid changes and cuts,” Gammell said.[…]

• From World: “Let’s build up American families” (Opinion)

I used to believe, as many conservatives still do, that our government is not in the business of subsidizing families to have kids. But after five children, including one born profoundly disabled, I’ve changed my tune. Apparently, so has the White House. The Trump administration recently unveiled plans to support married, stay-at-home parents by expanding existing Child Care Development Fund benefits that currently support working parents.[…]

• From The Independent (U.K.): “Proposed £12bn cut to disability benefits for children called ‘shockingly cruel’”

[…]The work from Policy Exchange calls for eligibility for the Child Disability Living Allowance (DLA) case load to be restricted to cut £11.9bn from welfare spending over four years.

Child DLA is the main health and disability benefit for under-16s, claimed by parents of around 915,000 children.

[…]Policy Exchange researchers add that 86 per cent of claimants are now reporting learning difficulties, behavioural disorder and hyperkinetic syndrome, calling for a restriction of eligibility around these conditions. They recommend this criteria be reviewed every three years to keep spending at “sustainable levels”.[…]

• From New African: “Two worlds of disability support”

[…]Wela Elmahi, a Sudanese special needs educator and music therapist now based in Dubai, has seen the situation from both sides of the divide – as a young professional trying to build a career in a Sudanese system with few resources, and later as a practitioner in one of the world’s more heavily resourced systems in the United Arab Emirates.

[…]That gap reflects deliberate policy choices. The UAE has built a legal and institutional architecture around what it calls ‘People of Determination’, anchored in the Federal Law of 2006. The National Policy for Empowering People of Determination rests on six pillars, including health and rehabilitation, education and social protection.

[…]Families in Sudan face a starkly different reality, […] many parents are forced to keep children at home, without professional guidance of any kind, not because they lack the will to help their children, but because the system offers them almost nothing to work with.[…]

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 NPR: “They were promised protection. Instead, these kids with disabilities died in foster care”

An NPR investigation — including an analysis of federal data on hundreds of thousands of children — shows that kids with disabilities are the largest group that go into foster care.

More significantly, they suffer the worst outcomes in foster care — getting trapped in the system longer than children without disabilities and dealing with lifelong harm.

One reason, NPR found, is the extreme complexity of the system.

“Caring for children with disabilities in foster care involves much more than meeting their medical needs,” explained Bobbi Andrew-Green, an Alaska foster parent to children with complex medical needs. She navigates child welfare, mental health, Medicaid, special education, home nursing and other service systems. “It is beyond complex to the point where some days, I’m dizzy,” she said.[…]

• From NPR: “Trump administration reverses stance on integration of people with disabilities

[…]Last week, a federal judge agreed to strip out mentions of "integration" from federal regulations tied to Section 504 of the Rehabilitation Act, a landmark civil rights law that prohibits disability discrimination. The judge did so after the Justice Department declined to defend its own rules in a lawsuit brought by several states challenging the legality of those rules.

[…]The court’s decision removes regulations from Section 504 that explicitly required federally funded programs to provide services in the “most integrated setting.”

“That lack of clarity will impact people’s rights. It will likely impact what states do and how they behave,” says Jennifer Mathis, a disability rights lawyer who helps lead the Bazelon Center for Mental Health Law.[…]

• From The New Arab: “Ms Rachel warns disabled Gaza children face 'torture' under Israeli siege”

Renowned children’s entertainer Ms Rachel has called for urgent action over the plight of Palestinian children with disabilities in Gaza, warning that starvation and Israel’s restrictions on medical supplies are putting already vulnerable children at further risk as Israel’s genocidal war on the Palestinian territory approaches its third year.

[…]A June report by UN investigators found that Israel’s war had caused a “severe orphan crisis”, while wounded Palestinian children “face a lifetime of disability”.[…]

• From CBS News: “Severely disabled toddler euthanized in the Netherlands under new rules on the controversial practice”

A severely disabled 1-year-old child has been euthanized by doctors in the Netherlands, a government review board has confirmed. It is the first case reported by authorities that was guided by new rules allowing for the termination of life of seriously ill children between the ages of 1 and 12 in the European nation.

[…]The Netherlands introduced the rules in 2024, which apply to children suffering unbearably with no prospect of improvement, and for whom doctors conclude there is no reasonable alternative to ending their suffering.[…]

• From Miami Herald: “Hope Florida led people with disabilities to dead ends as state misused $10M”

Liz Goodman struggled for years to get support for Logan, her 17-year-old autistic son, through government programs with long waitlists.

[…]It was frus­trat­ing enough that Hope Flor­ida, work­ing with the state’s Agency for Per­sons with Dis­ab­il­it­ies, led her to dead ends. Then she read recent stor­ies about a leaked grand jury report. It found that the Hope Flor­ida Found­a­tion, the non­profit cre­ated to sup­port the pro­gram, was part of a “soph­ist­ic­ated scheme” by [Florida Governor Ron] DeS­antis’ admin­is­tra­tion, one that diver­ted $10 mil­lion in Medi­caid set­tle­ment funds meant for the pub­lic toward polit­ical cam­paigns.

Good­man and nine oth­ers from the dis­ab­il­ity com­munity who spoke with the Tampa Bay Times are out­raged. They believe polit­ics were pri­or­it­ized over their crit­ical needs.[…]

• From SBS News: “Study Shows Healthy Family Relations Lower Depression in Parents of Children With Disabilities, Highlighting Need for Public Responsibility”

A recent study has revealed that while parents of children with disabilities experience more complex and sustained stress compared to typical households, healthier family relationships correlate with higher self-esteem and lower levels of depression.
[…]The research team suggested, "Family health is likely caused by socio-structural problems and gaps in welfare systems rather than simply a lack of individual family capacity or personal vulnerability. Therefore, to restore the family health of families with children with disabilities, there is a need to strengthen the public responsibility of the state and society."[…]

• From The Irish Times: “Budget 2027: Permanent disability support grant to be introduced”

A permanent disability support grant is to be introduced in next month’s budget as a “first step” in acknowledging the additional costs people with disabilities face.

The payment will “not meet the cost of disability”, a Department of Social Protection source said, but it will represent a “small improvement” on the €500 and €400 ‘once-off’ cost-of-disability payments provided in recent budgets.

[…]Government data put the additional costs faced by disabled people at between €10,766 and €15,500 per year, with additional expenses including extra energy costs, mobility equipment, home adaptations and modified modes of transport.[…]

• From Social Care Today: “‘Heinous crime’: women with disabled children struggle to find domestic abuse refuge”

Women fleeing domestic abuse who have children with disabilities are struggling to find suitable accommodation, a report by Women’s Aid says.

Just 14.3% of women with disabled children supported by the charity were placed in a refuge by the end of their case.[…]

• From Disability Scoop: “Deadline Nears For Education Department To Spend Special Ed Research Funds”

For months, there have been concerns that the U.S. Department of Education could allow millions in special education research dollars to lapse. Now, a federal judge is stepping in.

[…U.S. District Judge Allison D.] Burroughs said she opted to take a soft touch in the case based on assurances from the Education Department “that they intend to obligate the funds at issue before the deadline.”

However, she noted that “if it appears, as September 30 approaches, that defendants have misled the court and the funds will not be obligated by the deadline, the court may reconsider whether there has been undue delay warranting injunctive relief.”[…]

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.

Do you need a break from the doom and gloom? Yeah, me too. That’s why it’s nice that this week’s roundup features several good news stories: new funding for disability services in Ohio, dental care for disabled children in California, a new respite program in Ukraine, and a children’s album from rapper Lachi celebrating disability. We also found a review of the new film about Judy Heumann (the godmother of disability rights), a story about the new federal initiative for autism research and a bittersweet story about a North Carolina family honoring their daughter’s life.

But of course, it’s not all good news. The Medicaid fraud witch-hunt is creating delays and missing care for Minnesotans and a recent announcement to provide partial support to children on a years-long waiver waitlist in Arkansas is not the same thing as providing them full Medicaid coverage and benefits.

Read more in this week’s Medical Motherhood news roundup.

Is this new summary useful? Let me know or leave a comment.

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Medical Motherhood’s news round up

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

• From Dayton Daily News (Ohio): “County’s $87M support for Children Services, Developmental Disabilities involves no cuts elsewhere”

An additional $18 million annually through 2030 will support Montgomery County Children Services and the Montgomery County Board of Developmental Disabilities — without deep cuts to other services funded by the Human Service Levy, county officials say.

This is possible through the use of Human Service Levy reserves and other levy-funded agencies using alternative revenues to fund their budgets, county officials said.

[…]Group home costs have nearly doubled since 2020. The average number of children in care decreased 4.3%, from 671 in 2023 to 642 in 2025. But average monthly placement costs increased from roughly $3.08 million to $3.29 million.

Statewide, the number of children placed in care decreased by nearly 10% between 2019 and 2023, but the cost of that care increased 19%, according to the Public Children Services Association of Ohio.[…]

• From MinnPost: “Minnesota’s most vulnerable citizens are collateral damage in federal crackdown on Medicaid program”

[…]A Bloomington family is among thousands who have relied on services that are now going through a painful scrutiny for fraud.

“It’s always been a far from perfect system, but now they have made it so much worse,” said Caroline McGuire of the new requirements placed on her family. “People with disabilities are paying the price and it’s so much worse when it’s children.”

[…]McGuire’s son Colin suffered a four-month delay in physical therapy sessions, which his mother said are crucial at his young age.

She said the delay was caused by a new portal run by Acentra Health, the DHS’s third-party authorization agent. “And now we have to prove every month that Colin needs services,” McGuire said.[…]

• From KUSI News (California): “HHS Secretary announces grant to improve dental care for children with disabilities in San Diego County”

Secretary of Health and Human Services Robert F. Kennedy Jr. stopped in Escondido Wednesday morning to announce a new $51 million pilot program that will expand dental programs and access for children with disabilities.

[…]Secretary Kennedy said one in five children with autism haven’t had a deep cleaning in the last year, and only one in ten have a dental plan. This initiative is designed to enhance pediatric care.

Neighborhood Healthcare CEO, Dr. Rakesh Patel, says the center has over 7,000 patients who fall into this need of care and believes this is a win for San Diego County.[…]

• From Arkansas Democrat-Gazette: “OPINION | GWEN FAULKENBERRY: Aid needed now, not later”

[…]Paige described how she recently applied for a Community and Employment Support waiver, which waives a couple of the requirements for help under Medicaid for families like hers who want to care for their disabled children at home instead of putting them into an institution.

[…] the paperwork Paige had to fill out was 180 pages long, and this is while trying to work and take care of two little boys, one who is very ill. Then after she sent it and confirmed receipt, the government office told her they lost it. So, she had to fill it out again and send a new one. Then the office found the first one they had lost.

All this confusion led to a phone call Paige made to check the status of the waiver. She ended up in a conversation that blew her mind. When she asked if services could be backdated for the month the paperwork was lost at the office, the worker enlightened her on the reality of her child’s opportunity for help. The worker said, “Well, Paige, you’re not actually getting coverage. You’re getting put on a waitlist for coverage.”

Paige thought she heard wrong. “What do you mean, a waitlist?” Then that poor DHS worker had to tell her, “Ma’am, this waitlist can last up to a decade. Your child is not receiving the help at this time. This is a waitlist you just applied for.”[…]

• From Forbes: “Lachi's New Album Gives Disabled Kids The Story They're Missing”

Lachi's new album, "Magnificent," is a groundbreaking anthemic pop record for children, celebrating disability culture, identity, and pride. Featuring over 70 disabled collaborators, including Grammy winners, the album aims to provide disabled children with empowering music that affirms their belonging, a stark contrast to traditional narratives of tragedy. Lachi, a blind and neurodivergent entrepreneur, created the album she wished she had as a child, challenging the music industry to recognize disabled artists. […]

• From Disability Scoop: “New Autism Research Initiative Aims To Speed Diagnosis, Personalize Care”

Federal officials are rolling out a major new research effort to “transform” autism diagnosis and care.

The program known as Systems for Phenotypic Evaluation, Clinical Trajectories, Response, and Agency, or SPECTRA, will bring together “biological, clinical, behavioral, and real-world data with advanced computational tools,” the U.S. Department of Health and Human Services said.

The idea is to enable earlier and more accurate diagnosis and a better understanding of what influences each person’s health and development in order to establish more individualized approaches to care. […]

• From ICS Film: “Toronto 2026 review: Being Heumann (Siân Heder)”

Opening this year’s Toronto International Film Festival is the latest film from Siân Heder, Being Heumann. The film, which follows in the footsteps of Heder’s Oscar Best Picture-winning film CODA, tells the story of disability rights activist Judy Heumann in 1977, as she leads the charge for equal rights for disabled people, particularly in access and accommodations to government properties and buildings. The film is constantly engaging, rousing, and moving, while telling an important story about the history of the disability rights movement and the people who fought to make basic accessibility a right rather than a privilege.[…]

• From Judicial and Legal Newspaper (Ukraine): “Two weeks of rest for parents of children with disabilities: how the new service will work”

From January 1, 2027, parents and other persons who permanently care for children with disabilities will be able to receive two weeks of temporary rest once a year. During this period, the care of the child will be taken over by the appropriate social service provider.

[…]According to [government minister Halyna] Tretiakova, it is not about simply giving money to the family and offering them to find a caregiver themselves.

“We cannot just say: ‘Here is the money, find anyone.’ If parents transfer the child to another person for care, the state must create a safe and understandable system,” she emphasized.[…]

• From CBS 17 (North Carolina): “After daughter’s death, Raleigh parents donate medical supplies, work to change views on disability”

[…]Olivia’s life wasn’t easy; her loss was absolutely devastating. Still, her parents are grateful for the time they had.

“I would go back and I would do it again every single time, and I would never hesitate because for six years and 10 months and 29 days I was her mother,” Marisa said. “And even now, I am still her mother.”

Olivia changed her family’s perspective, and her parents will make sure her legacy lives on.

“For the rest of our lives, Olivia’s name will be spoken, will never be forgotten,” Marisa said. “Everyone will remember my daughter, and everyone will remember that disabled children – disabled people – are people too.”

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: “As Medicaid Changes Near, Concerns Mount That People With Disabilities Will Lose Coverage”

[…]Concerns that individuals with disabilities and other health conditions will be stripped of needed health coverage led more than 70 organizations to file an amicus brief this month in a case brought by a coalition of officials from 25 states and Washington, D.C. challenging the CMS rules.

“Congress excluded medically frail people from the work requirements,” said Jane Perkins, litigation director at the National Health Law Program, which filed the brief along with the American Association of People with Disabilities, the Autistic Self Advocacy Network, Easterseals and many other groups. “They should not have to repeatedly prove that they are unable to meet the work requirements.”[…]

• From Arkansas Advocate: “Arkansas will bolster services for kids with disabilities after public outcry over long waitlist”

Arkansas will provide additional support to children with disabilities who have been waiting for services, Gov. Sarah Huckabee Sanders said Tuesday, in response to growing demands from families for a special legislative session to address the issue.

[…]The move comes after families have taken to social media to highlight the waitlist and obstacles in receiving needed services, with posts that have been shared thousands of times.[…]

• From The 74 via The Denver Post: “How parents in Boulder rewrote the rules on autism therapy in school”

Jenny Thamer had low hopes for the meeting called by the superintendent of the Boulder Valley School District to hear from families of autistic students.

[…]A year later, Boulder Valley implemented what is likely the nation’s first — and only — neurodiversity policy. Adopted by the school board in 2024, it commits district schools to using “strategies to affirm a student’s identity, rather than trying to ‘fix’ or ‘cure’ them.”

[…]Just sitting in a room with so many other people sharing the same experiences was cathartic. “I had tears hearing other people’s stories,” Thamer says. “Parents carry a lot of trauma from advocating for their kids.”[…]

• From Fox 10 News (Alabama): “Baldwin County families say children with special needs denied Medicaid waivers”

Three Baldwin County families say their children with special needs are being dropped from Medicaid. They say they are losing the Medicaid waivers their children rely on to survive, and that paperwork in their case files was altered without their permission.

The families say Alabama’s Elderly and Disabled Waiver pays for daily care and medication their children cannot live without. They say that assistance has been pulled despite no change in their children’s conditions, and that the paperwork used to cut them off does not add up.[…]

• From KOLO News Now (Nevada): “Mother recounts fear of being separated from children with special needs during wildfire”

[…]Tillinghast says she’s sharing her experience to raise awareness for other families with children who have special needs, to let them know they aren’t alone, and to inspire the community to put safer evacuation measures in place for those who might need extra help.

• From Illinois State Democrats: “Collins law expands access to adult changing stations in public spaces”

[…Illinois State Senator Lakesia] Collins’ new law, House Bill 4379, will expand Illinois’ Equitable Restrooms Act by requiring certain newly constructed public buildings and state-owned facilities to provide access to adult changing stations. Adult changing stations provide a safe, sanitary space for caregivers assisting older children and adults with disabilities who require personal care support.[…]

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.

Our Medical Motherhood comic artist Lenore Eklund is back! She said this comic has been in her mind since the first quiet moment after her daughter’s emergency hospital stay on a summer trip.

There’s a lot we can prepare for. But the nature of medical motherhood is that things don’t often go according to plan.

Fortunately, we always have ways of expressing this unusual and unexpected life. Art can be healing in all forms — both for those who create it and those who see their own experiences reflected in it.

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!

Watch my presentation to the Oregon Senate Committee on Human Services

One thing that is unique about my perch here behind Medical Motherhood is that I get to see the wider policy landscape. I see arguments bandied back and forth across the political spectrum, as well as niche stories from around the world that most people don’t have delivered to them in their social media feeds.

So when advocacy I’ve been doing for a few years around the types of records my state demands and keeps for disabled Medicaid applicants came to a head a few weeks ago, I jumped at the chance to present on the topic to the Oregon Senate Committee on Human Services.

You see, as complicated and bureaucratic as Oregon’s Medicaid system is, it’s only going to get worse next year. The One Big Beautiful Bill Act, aka H.R. 1, is adding several hoops for Medicaid applicants to jump through. Many — like children, disabled people and caregivers — are supposed to be exempt from some of the biggest new requirements. But Deloitte — the company behind the IT systems used by half of American state governments to determine Medicaid eligibility — is charging enormous sums to change those systems. So, Oregon officials feel it’s just fine to just make all applicants go through the same process.

I disagree.

You can watch the 20-minute video of my presentation here or just peek at the (easy-to-understand!) slides here.

How is your state handling the rollout of HR 1’s new eligibility requirements? Are disabled people getting caught in the web as they have been in Indiana and Michigan?

If you’re working on Medicaid eligibility issues in your state, I’d love to compare notes.

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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 NPR: “Special education head at Education Department abruptly resigns”

[…Kelly] Rogers, who has been overseeing the Office of Special Education and Rehabilitative Services (OSERS) since May, announced her departure less than a day before much of her staff were scheduled to move to the Department of Health and Human Services building in Washington D.C., according to internal emails reviewed by NPR.

[…]it is unclear who will serve in the role after she leaves on Sept. 11.

[…]On top of the staffing and physical changes to the Education Department, [parent advocate Chad] Rummel points out that the president's budget proposal for the coming fiscal year 2027 would cut over 80% of OSERS staff. He said if that proposal becomes reality, he has deep concerns for the rights of students with disabilities.[…]

• From ProPublica: “Vouchers Promise Students With Disabilities a Path to Private School. Parents Say That’s Not the Reality.”

[…]More than half of Utah’s counties have no private schools that take its vouchers for students with disabilities. In Georgia, 71% of counties have none. And in Louisiana last year, among about 350 private schools, only 14 reported enrolling a single child with a disability. Eight of those admitted five or fewer such students.

Even in Florida, with its urban centers and roughly $5 billion voucher programs, ProPublica found that more than a dozen counties have no private schools that serve kids with disabilities or have only one school with limited offerings. Our analysis of state data also shows that more than half of Florida’s private schools say they do not serve students with any type of disability.

“It’s touted that this program is an equalizer, and then people have choice,” said Jinny Kim, managing attorney at the Disability Rights Education and Defense Fund, a national civil rights and policy nonprofit that advocates for people with disabilities. “But then if you really look at the details, it’s not actually how it happens.”[…]

• From Nebraska Examiner: “Parents, professionals highlight errors in Nebraska assessment for developmentally disabled”

Just over a year after Nebraska launched a new system to assess Nebraskans with intellectual and developmental disabilities seeking Medicaid assistance, a group of parents gathered to inform state officials about the negative impacts the change has had on their families.

[…]One of the biggest flaws noted at Wednesday’s meeting was that the interRAI system lowered the funding of participants who live at home with their loved ones. [Parent advocate] Salber said this is considered “informal support” and is used to justify reduced aid.

Multiple parents testified Wednesday that their children’s funding tiers dropped because of this factor, though all said their needs are severe enough to require higher support.[…]

• From Atlanta News First: “Georgia school districts spend hundreds of thousands on special education legal battles”

Georgia school districts are spending hundreds of thousands of taxpayer dollars on legal battles to fight parents of disabled children over special education evaluations.

District records, uncovered by Atlanta News First Investigates, reveal proceedings have more than doubled costing both families and taxpayers.

[…]According to records obtained by Atlanta News First Investigates, Gwinnett County Schools spent more than $720,000 on legal fees to hire attorneys for due process proceedings from January 2023 to February 2026. The total does not include settlement agreements paid to families when disputes are resolved out of court.[…]

• From ID ED News: “The funding formula debate has a human cost”

Everyone in Idaho education policy knows the number: $100 million. That’s the gap between what state and federal funding provides for special education and what it actually costs Idaho school districts to serve disabled children.

[…]Idaho has among the lowest ratios of special education staff to students in the nation. Only Idaho and Ohio have fewer than 20 special education staffers per 200 students, compared to more than 60 in some states.

[…]In 2025, the Legislature rejected a $3 million proposal to help districts cover costs for students requiring full-time ASL interpreters or dedicated aides — the children with the greatest needs and the highest per-student costs. Three million dollars. Rejected by one vote. What passed instead was a $5 million catastrophic fund, accessible only after a district has already spent $30,000 on a single student and exhausted every other available resource including Medicaid — the same Medicaid benefits the Legislature spent that session attempting to cut for disabled Idahoans.[…]

• From Bloomberg Government: “Medicaid Cuts Leave Schools Pondering How to Serve Disabled Kids”

[…]Best known as the state-federal health insurance program for low-income and disabled Americans, Medicaid is also a significant funding source for special-needs services in K-12 public schools. And no state has cut Medicaid enrollment as aggressively as Indiana has, as states tighten eligibility requirements.

The state has seen the largest percentage drop in child health insurance enrollment of any state, losing more than 203,000 kids — or 23% — since January 2025, according to Georgetown University data. That figure includes children enrolled in both Medicaid and the Children’s Health Insurance Program, which covers kids whose families earn too much to qualify for Medicaid.[…]

• From My Bellingham Now (Washington): “Program for disabled children’s families seeking additional funding after budget cut”

A statewide support program for families of children with developmental disabilities will continue after weeks of uncertainty.

Washington’s Parent to Parent program has received a funding cut of just over 10% from the Department of Social and Health Services, but advocates say they’re relieved it wasn’t eliminated.

The program helps families navigate services and connects them with trained parent volunteers. Last year, it logged nearly 93,000 contacts with families statewide.[…]

• From The Virginia Independent: “Republican cuts will decimate caregiving in America, report says”

Federal cuts championed by President Donald Trump and congressional Republicans are endangering caregiving programs across the country, leaving states scrambling to support caregivers who could lose their jobs as well as the older individuals, people with disabilities, children and others who rely on their services, according to a new report from the Century Foundation.

The progressive think tank published its findings at the end of July in a report titled, “Care Matters: A 2026 Report Card on Care Affordability and Access.”[…]

• From U.S. News & World Report: “Parents, Advocates Split on U.S. Special Education Change”

More than 8 million American children with disabilities are starting the new school year with guarantees of a decent public education at their local schools and federal funding that helps pay for it.

But parents and advocates are split on whether a Trump administration move that transfers federal responsibility for special education from the Department of Education to the Department of Health and Human Services will help or harm students with disabilities.

[…]Fully endorsing the special education changes is Jeanne Allen, CEO of the Center for Education Reform, who says the Department of Health and Human Services is capable of handling special education and emphasizes that it did so before the education department was created.[…]

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 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.

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 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.

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 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.

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• 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.

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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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• 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.

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

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• 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.

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

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• 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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Happy Father’s Day, medical dads.

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Medical Motherhood’s news round up

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Because of privacy concerns, we never got an explanation.

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

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

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

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

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

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

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

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

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

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

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.[…]

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