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

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

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

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

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

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

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

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

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

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Medical Motherhood’s news round up

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

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

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

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

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

Download your card now.

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Medical Motherhood’s news round up

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

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

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

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

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

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

Out now: A New Model for Portland Special Education

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

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

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

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

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

But it wasn’t enough.

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

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

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

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

Read the full story at PDXParent.com.

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Medical Motherhood’s news round up

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

[…]The legislation would:

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

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

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

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

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

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

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

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

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

Greetings from Seattle!

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

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

Story time.

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

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

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

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

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

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

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

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

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Medical Motherhood’s news round up

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

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Readers, I have a question for you.

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

This week is different.

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

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

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

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

Leave a comment

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Medical Motherhood’s news round up

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

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

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

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

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

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

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

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

• We document caregiver hours.

• We submit medication records.

• We undergo eligibility assessments.

• We justify equipment (again and again).

• We coordinate with doctors, specialists and therapists.

• We track and report changes.

• We respond to audits and paperwork requests.

• We appeal decisions with even more extensive documentation.

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

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

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

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

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

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

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

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

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

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

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Medical Motherhood’s news round up

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• From Disability Scoop: “Federal Autism Panel Cancels Meeting Without Explanation”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

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Why does it feel like we have to look like we don’t need help in order to get help? I’m just as guilty of putting on a good face when potential caregivers come for a meet-and-greet. However, now that I think about it, for what turned out to be one of our best long-term caregivers, I remember blurting out that I wasn’t high or anything, I was just really, really tired. She laughed at that and I think it may have been one of the reasons she took the job. She could see how badly I needed the help. What about you? Do you clean up or let it all hang out?

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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.

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• From KTVB 7: “Idaho lawmaker pushes to restore program that pays parents to care for children with disabilities”

An Idaho lawmaker is pushing to restore a state program that paid parents and spouses to care for their loved ones with severe disabilities after the Department of Health and Welfare ended it last year.

House Minority Leader Ilana Rubel, D-Boise, told KTVB the program’s termination has left some of the state’s most vulnerable families without options, unable to find outside caregivers and unable to be compensated for providing the care themselves.

[…]During the COVID-19 pandemic, Idaho began paying parents and spouses to serve as the caregiver for their child or partner with disabilities at the same hourly rate the state pays third-party agencies to provide care for.

[…]But in 2025, the Department of Health and Welfare ended the program, citing concerns over overuse and potential fraud and abuse.

[…]Now, Rubel is pushing legislation to bring the program back with guardrails she told KTVB will address the state's concerns. Her bill would limit participation to 1,000 families and cap paid caregiver hours at 25 per week for parents or spouses, with new Department of Health and Welfare staff dedicated to monitoring for fraud, waste and abuse.

[…]With no outside help available and no compensation for doing the job themselves, Rubel said many families are trapped.

[…]"I really worry about the financial duress that they're being put under, and whether some of them may be losing their home soon if we don't act," Rubel said.[…]

• From NJ.com: “This N.J. official drove 148,000 miles to help families with disabled loved ones. What he found was heartbreaking.”

Paul Aronsohn had just submitted his first annual report as the new Ombudsman for people with developmental disabilities when he was summoned to a meeting with a senior member of Gov. Phil Murphy’s administration in early 2019.

The report described New Jersey as a ‘tale of two systems, one that is good and one that is not good,’ that is ‘in need of fixing because lives, frankly, depend upon it.’”

Aronsohn said it was immediately clear the Murphy administration was not pleased with his candid report.

“Paul, what are you doing? You’re not supposed to be an advocate,” he said the senior official told him. After a moment of stunned silence, Aronsohn quickly recovered, remembering Murphy had described him as “the administration’s lead advocate” for people with disabilities in the press release announcing his appointment in April 2018.

[…]He tells this story because it offers a glimpse into what the job required. He had to be the fervent voice on behalf of thousands of people with disabilities who deserved more than they were getting from the state. And, he would have to be the rational arbiter needed to establish a rapport with state officials and members of multibillion-dollar industry that provides housing, supervision, employment and other vital services to disabled people.

[…]“We work very closely with families who come to us. We get emotionally invested. In that sense, it has been the best job,” Aronsohn said. “On the other hand the indifference we encountered on a regular basis — it was infuriating and heartbreaking.”

He also offered specific advice for Gov. Mikie Sherrill’s administration, which will appoint his successor:

Tear down the “wall around state government” that keeps officials far from the daily reality of how stressful it is to care for people with disabilities and the frustration of navigating an enormous bureaucracy.

Appoint people to the state departments of Human Services and Children and Families who know what it’s like to live with autism, cerebral palsy and other disabilities.

Require these officials to speak directly with clients and their families.

“We encounter people inside and outside of state government who don’t have that sense of mission or that sense of urgency that should be a prerequisite for any of these jobs,” Aronsohn said.[…]

• From Sky News (United Kingdom): “Shake-up of support for children with special needs and disabilities unveiled”

The government has unveiled sweeping plans to reform support for children with special educational needs and disabilities (SEND) in England’s schools.

Under the proposals, the number of pupils receiving an education, health and care plan (EHCP), which sets out the level of help a young person is legally entitled to, will start falling each year from 2030, according to official projections.

Instead, around one in eight SEND children currently on an EHCP will transition to new plans between 2030 and 2035.

While the percentage of pupils with an EHCP is predicted to keep rising until 2029/30, the education department has estimated it will drop to around 4.7% by 2034/35 - down from 5.8% in 2025/26.

Education Secretary Bridget Phillipson said children with the most complex needs would keep their support plans as part of the reforms, which are set to come into force from the end of this decade.

She also insisted the new system would “take away that fight that so many parents” face in accessing support.

Children will also be allowed access to earlier support as part of a £4bn investment in the SEND system in England to make it more inclusive, Ms Phillipson said.

[…But] Anna Bird, chair of the Disabled Children’s Partnership, said it was “deeply concerned about plans to restrict access to EHCPs to ‘most complex needs’, while leaving out which children it considers to have complex needs”. […]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

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I have seen a lot of scared parents on social media this week talking about the Trump Administration halting durable medical equipment (DME). This is the name for the category of medical goods ranging from catheters and diapers to tube food and wheelchairs.

I can track this panic to clips taken out of context from an announcement this week from Vice President J.D. Vance and Dr. Mehmet Oz, leader of the Centers for Medicare and Medicaid.

Dr. Oz certainly looks like he is reading from prepared remarks in the video but his speech writer needs an editor. The phrasing was incomplete — to terrifying effect for those who only saw that clip and rely on Medicaid-funded DME daily to literally live.

Better information can be found in the Health and Human Services press release or by skilled reports from MedTechDive or Reuters.

The Trump administration is imposing a six-month moratorium on Medicare enrollment for certain suppliers of durable medical equipment, prosthetics and orthotics, or DMEPOS, as part of a broader plan to combat fraud in healthcare. (MedTechDive, Feb. 27, 2026)

Catch that? The freeze is on supplier enrollment. Not patients.

DME fraud is a serious problem. There are cases where DME suppliers invent patients and/or needs, charge the government thousands — even millions — of dollars for invisible, non-existent supplies. Take the case last July of a Florida convict’s $61 million in fraud.

This is not to say the Trump administration is not causing justifiable panic in disability families. The list of states — red and blue — that are looking at cutting disability services in the wake of H.R. 1 keeps growing. The guidance from CMS so far on how to implement H.R. 1 is woefully inadequate. And there is no good information yet on what exactly the impact will be on withholding $259 million from Minnesota Medicaid, announced at the same time as the DME freeze.

There’s plenty to worry about. But I worry most about families who are so burned out and buffeted by scary, inaccurate information that they don’t have the spoons to react to scary, accurate information.

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• From Seattle Times via Yakima Herald-Republic: “Washington lawmakers propose cuts to services for children with disabilities”

State lawmakers have proposed substantial cuts to funding for services for infants and toddlers experiencing disabilities and developmental delays, a move that advocates say could jeopardize critical support for the youngest children and increase future state costs.

The proposal also likely violates a federal law requiring the state to spend the same amount of money or more year over year on these services, said Kristina Mendieta, director of public affairs for Kindering, Washington’s largest Early Support for Infants and Toddlers provider. That could put federal funding in jeopardy, she said.

The program, known as ESIT, serves thousands of Washington kids under 3 experiencing developmental delays or disabilities each year with support like speech and occupational therapy. In the federal fiscal year that ended in September 2021, the program reached about 21,400 Washington kids.

But as the state wrestles with a budget shortfall, lawmakers have advanced a proposal that would change the program’s funding formula, amounting to a 17% funding cut, through House Bill 2688. This could affect services for about 3,600 infants and toddlers. […]

• From Psychology Today: “The Moral Energy Problem”

[…]Edith Raap, a researcher at University of Applied Sciences in Utrecht who studies what she calls levend verlies or living loss, studies the chronic grief that parents of disabled children carry, not because their child has died, but because the life they imagined turned out radically different. Raap’s research began with a simple observation: There seems to be little space in the Dutch care system for the parent’s voice. Professionals are trained to look at the child, while the parents are placed more as an observer than an integral part of the conversation.

The judgment, Raap argues, is in the language itself. Professionals talk about “involving parents” as if parents aren’t already involved, as if they need an invitation to care about their own child. Parents should involve professionals, she says, since parents are the ones navigating the system, filling out the paperwork, proving every year that their child is still disabled.

[…Simon van der Weele, a moral philosopher at the University of Humanistic Studies in Utrecht, comes at the same problem from the institutional side. He has spent years doing ethnographic fieldwork inside Dutch group homes for people with severe intellectual disabilities.

When I interviewed van der Weele, he often used the term “moral energy” or the capacity to see another person as fully human. There is a gradual decay of empathy among professionals who work long hours, get little recognition, but must use a range of creative energies to constantly connect with the severely disabled.

[…]Raap and van der Weele are describing two ends of the same failure.[…]

• From CBS News: “Dancers of all abilities take center stage during NYC National Dance Institute's DREAM Project”

Parents of children with disabilities say it can be difficult to find extracurricular activities that are inclusive and accessible. But twice a year, the National Dance Institute in Harlem brings together dancers with and without special needs for a camp, proving anyone can take center stage.

In February and August, dancers with and without disabilities participate in DREAM Project, a week-long program that’s tailored around each participant’s unique abilities. Some use wheelchairs; others may be blind or have Autism.

Instructors say choreography starts with what everyone can do, then dancers can differentiate based on their own individual skills.

[…]The New York City Comptroller surveyed over 600 school principals in 2025 and found that many after-school programs exclude students with disabilities.

Affordability, availability, proximity, and staff experience are all factors families have to consider when finding a program.

[…]Organizations like INCLUDEnyc attempt to bridge this gap. It offers resource fairs each winter to help parents navigate the school system and find affordable, inclusive activities for their kids.[…]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

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• From Nebraska Public Media: “DHHS ‘error’ in case of Nebraskan with disabilities hits home with state lawmaker”

Isaac Rountree’s parents were more than puzzled when their adult child, a member of the state’s developmentally disabled community, was suddenly cut from his Medicaid coverage.

The rationale from the Nebraska Department of Health and Human Services made no sense to the Rountrees, who felt deprived of the detailed explanation about their son’s benefits they said is required under Nebraska law.

[…]Ultimately, after days of fretting and figuring how to adjust their budget to pay for his services themselves, a DHHS representative called to say Nebraska’s largest state agency had made a “data entry error.”

[…]“It’s still confusing to us,” said State Sen. Victor Rountree, a Nebraska lawmaker whose training as an accountant has him looking for an analysis that explains how his son was booted. “I wanted to see the work papers — show me the work.”

[…]Though Isaac’s predicament apparently is resolved, the senator said his concern remains. He suspects state health officials are “digging to find anything they can latch onto” to question a person’s eligibility.

He said not everyone may be in a position to challenge a decision. He wants the DHHS to adhere to state law, and routinely provide the computation and methodology behind a decision that alters lives, adding that complete information is vital to launching an appeal.

“I’m taking my gloves off,” Rountree said. “I’m just like every other parent and family … we need bonafide, good information where we can make decisions.”

• From ITV (United Kingdom): “Parents of children with special needs 'forced' to give up work due to 'broken' SEND system”

A coalition of charities has told ITV News that parents of children with special educational needs and disabilities (SEND) are being pushed to the brink by a broken system and left with no choice but to give up their employment to advocate for their children.

Parents and carers have warned they are increasingly being “forced” to quit their jobs, reduce their hours or take out loans, as overstretched and under-resourced schools struggle to support students with additional needs.

[…]A survey shared exclusively with ITV News by the Disabled Children’s Partnership found that over a third (37%) of parents and carers in England have had to quit their job to support a child with SEND, while 34% have had to reduce their working hours and around a quarter (22%) have had to change jobs.

Meanwhile, 31% of the families surveyed said they have to rely on benefits due to the financial pressure of supporting a child with additional needs.

Anna Bird, from the DCP, said it is a “stain on society” that a generation of children has been “let down by the system that has insufficient support”. […]

• From Chosun Daily: “Elana Meyers Taylor Wins Monobob Gold as Disabled Children's Mom”

Elana Meyers Taylor (42, United States), a “supermom” who raised children with disabilities while competing on the Olympic stage, won her first individual gold medal on her fifth Olympic challenge.

[…]Taylor is the mother of two sons with disabilities. Her older son, born in 2020, has Down syndrome and hearing impairment, while her younger son, born in 2022, also has hearing impairment. During competitions, she often waves a handwritten sign saying, “Mom loves you,” toward broadcast cameras for her sons, who struggle to hear. “After the tunnel, there is bright light,” Taylor said. “I want to deliver hope to many parents raising children with disabilities.”[…]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

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Finding the right caregiver really does feel like dating! Love and care go hand in hand, even when care is a “job.” Personality fits can go a long way towards finding the right match. Even though we aren’t speaking of romantic love when talking about caregivers (no, thank you!), love is very much an ingredient to the right care mix. The ancient greeks identified six types of love, five of which are not romantic. This Valentine’s Day, take time to reflect on the many types of love you have for those on your care team and the love they have for you and your child.

By the way, cartoonist Lenore Eklund has her own Substack now where she writes about making art while raising a medically complex child and the ways life changes shape. Check out her first post here.

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• From the Kansas Reflector: “Forty individuals, organizations object to Kansas Senate bill adding barriers to food and health aid”

On Tuesday, the [Kansas] Senate Committee on Government Efficiency, or COGE, heard from the lone proponent of [a bill that would add numerous barriers to Medicaid and SNAP benefits] — a conservative Florida organization that has sought for more than a decade to slash participation in Kansas public assistance programs.

[…Little Lobbyists State Outreach Manager Melissa] Sabin said requiring determinations of eligibility to be repeated monthly or quarterly would lead to additional paperwork errors, missed notices or administrative delays rather than documentation of alleged fraud or abuse.

She said a proposal for recipients of Medicaid to have eligibility reassessed every three months, rather than at 12-month intervals, could violate federal regulations. In terms of her son, she said the bill would compel the state to reconsider four times each year whether Logan, born with a genetic disorder characterized by intellectual disabilities, was eligible despite lack of change in his medical diagnosis.

“His condition does not fluctuate with paperwork cycles,” his mother said. “His need for skilled care does not disappear because the form is refiled or a verification is resubmitted.”

[…]Under the Senate bill, the Kansas Department of Health and Environment and the Kansas Department for Children and Families would be required to establish data-matching systems to automatically share personal information on Kansans with other state agencies. KDHE would have to submit data to the federal government on a monthly basis to determine if Kansans were enrolled in Medicaid in other states.

[…]The fiscal note attached to the Senate’s bill indicated state agencies would need to hire about 300 new employees to handle the revised eligibility processes. The Kansas Department of Administration estimated the cost of complying with the law would be $17 million to $18 million annually.[…]

• From Holland Bloorview Bloom Blog: “When kids with complex needs become adults, care falls apart”

Young adults with childhood conditions like cerebral palsy have longer, more costly hospital stays and are more likely to be readmitted within 30 days, according to a new study in JAMA Network Open led by researchers at The Hospital for Sick Children (SickKids) in Toronto [Canada].

“As the number of children with complex chronic conditions surviving to adulthood continues to increase, this population will continue to grow,” says lead author Dr. Sarah Malecki, a general internist and PhD student in the Cohen Lab at SickKids.

But the adult healthcare system “was not built for the type of coordinated care they need,” she says.

Researchers reviewed data related to almost 20,000 hospital admissions by adults aged 18 to 39 who were discharged from 29 acute-care hospitals in Ontario in 2018.

Young adults with complex congenital conditions like cerebral palsy, sickle cell disease and cystic fibrosis represented 6.7 per cent of those admissions, yet they used almost 11 per cent of all hospital bed days.

[…]“I have heard too many times from patients and families that the transition to adult services can feel like ‘falling off a cliff,'" says co-author Dr. Eyal Cohen, a pediatrician with SickKids’ complex-care team who heads the hospital’s Child Health Evaluative Sciences.

[…]The researchers say we need to invest in new models of care to address the unique needs of this adult population.[…]

• From Nonstop Local: “Washington considering bill to cut funding to child development programs”

[…]In the 2026 legislative session, a proposed bill, could change how [Washington’s Early Support for Infant and Toddlers (ESIT) Program] funding is allocated to programs like Joya, and after an amendment accepted Monday, could decrease funding to 2008 levels.

[…]Representative Joshua Penner explained[…:]“Traditionally, the funding, for the various programs is tied to the funding rate of K-12, and K-23 special education specifically,” Penner said. “the belief there is that for these individuals, this is part of their education development, because they need that kind of instruction to work up to a place where they can move into a school system later on.”

HB2688 proposed decoupling the rate, meaning that instead of being attached to K-12 Special Education, the funding would stand alone.

[…Early intervention services provider] Joya's director of strategic programs and initiatives Jessie Laughery says the current version of the bill could result in a $31 million statewide cut annually, translating to a $1 million loss for Joya each year.

[…]Laughery said that in just the last year, the number of children served by Joya has skyrocketed.

“We’ve served just over 700 putting us on pace to serve 1500 kids this next year. That’s a 60% growth from last year,” Laughery said.

A $1 million cut could limit the families served.

“We’re not able to say, go find these services elsewhere because they don’t exist,” Laughery said.

[…]Joya reports that 64% of kids leave the program at age 3 having met age-appropriate milestones and do not require further intervention.

“We certainly understand the tough position that the state legislature is in,” Laughery said. “But we also know that what costs us a dollar today might cost us $5 down the road in special education services.”[…]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

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I really enjoy these quarterly reports. In a life that is so day-to-day, crisis-to-crisis, it is an opportunity for me to take stock of the last three months and dream about the next few months.

In December, I participated in Rauhnächte — a ritual where you burn an intention for the new year on the winter solstice and for 11 days after. I had so many good intentions. Then January hit.

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

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I’m getting a little mouthy in my old age.

As I’ve explained here before, Oregon could balance the budget in some pretty terrifying ways for the approximately 2,400 families of disabled children who would be cut off from Medicaid. This would be if they cut this state’s option called “parental income disregard,” which allows disabled children to qualify for Medicaid based on their own income (usually $0) rather than their parents’ income. Similar options are called Katie Beckett waivers or simply “waivers” in other states — because they “waive” the traditional income rules for Medicaid, America’s health insurance program for the poor.

So, this week, at a hearing of the state’s budget committee, I had planned a rather reasoned and staid speech, which you can read here. But after an hour and a half of listening to money requests, I kinda snapped. I needed legislators to understand the sorts of issues medical parents deal with regularly versus the important-but-not-exactly-death-defying traditionally funded government services.

You can watch a video of my testimony on my TikTok page or read the text below:

Hi, thank you. I have submitted written testimony, including many adorable valentines from kids imploring you not to cut disability services. But tonight I’m going to toss that and just speak from the heart.

I’ve heard a lot of people tonight use the words “vital” and “critical” and I have to wonder if any of them have had to watch their child struggle to breathe. Or spent hours every day trying to get them to eat enough. Or stayed up all night — night after night! — to manage a sensory meltdown, or seizure condition.

I was shocked to see children’s disability services on the cuts list from DHS [the Oregon Department of Human Services]. These should not even be on the list, let alone towards the top.

If we aren’t funding the services that let children survive, what are we even doing?

Disabled kids can’t just work harder or raise funds another way.

If their services are cut, we will all learn the meaning of the words “vital” and “critical.”

H.R. 1 did not change the federal match rate. While you have tough decisions to make to balance the budget, please listen to your youngest constituents and protect children’s services.

Happily, my testimony was joined by many others who also advocated for keeping parental income disregard, as well as autism level 1 eligibility and home and vehicle modifications — the other potential cuts to children’s services on Oregon’s list.

You can read more of their stories in this Capitol Chronicle article. The valentines I referenced are also visible at this link (scroll down) and were made at the kickoff party for the Oregon chapter of Little Lobbyists, which also got some press coverage this week. The valentines were a really cute and kid-friendly way to advocate for services.

Despite a much rosier tax revenue picture than when the legislature asked agencies to come up with budget cut options — from a $373M deficit in August, to a $63M deficit in November to a nearly $100M surplus last Wednesday — it is still unclear if children’s disability services are safe in the state.

Oregon’s short session ends March 8.

How’s it going in your states? How are your legislatures approaching the roll out of H.R. 1, otherwise known as the One Big Beautiful Bill Act?

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• From KMTV: “Idaho families are bracing for possible Medicaid cuts”

Proposed cuts to Idaho’s Medicaid budget could eliminate critical services for families with disabled children, leaving Magic Valley parents worried about their children’s futures.

Megan Turner, parent of a disabled child, said the potential loss of services feels devastating for her family.

“It feels as if a chance for my child to have a normal life is being taken away from him,” Turner said. “If he’s not able to have these services that he needs and the program gets shut down completely it will be devastating for my family.”

[…]These services are caught up in a Medicaid budget debate that could mean cuts or changes. Proposed cuts to services that the legislature could take action on include a $176 million reduction to home and community-based care.

[…]“If this program is cut then they aren’t recognizing what an impact this will have on families and communities,” [home and community-based services provider Heather] Barnes said. “Hospitals will be overfull of children with behavioral difficulties that they don’t know what to do with. There’s been people mentioning putting children in residential places. They don’t exist in Idaho. There is no place for them to go.”[…]

• From Australia Broadcast Company (ABC): “Mother of autistic children shares experience in wake of suspected double murder-suicide”

A mother of two children with disabilities living in regional [Western Australia] wants other families to know there is “some light at the end of the tunnel”.

[If you or someone you know is having thoughts of suicide, call 9-8-8 for the U.S. national hotline.]

Jo Russell has shared her story of navigating bureaucracy while caring for children with complex needs — and the desperate moment she considered taking her own life.

It comes after last Friday’s suspected double murder-suicide, where teenagers Leon and Otis Clune, who lived with disabilities, were found dead in their Mosman Park home along with their parents, Jarrod Clune, 50, and Maiwenna Goasdoue, 49.

“It’s been a very difficult week … it hit a nerve with me,” Ms Russell said.

“I’ve walked in their shoes and I was so close to perhaps taking that course of action [suicide], but I didn’t.”

Ms Russell stressed her children were a “gift”, rather than a “burden”.

“I was in that dark space five or six years ago, and I want to share my story, because it’s the isolation when you have very complex children to look after, when you have to fight and advocate every day and find the strength to carry on,” she said.

[…]Ms Russell urged parents to share their story to remove the “awful isolation” she felt during times of adversity.

She said the reforms to the National Disability Insurance Scheme (NDIS) had placed additional pressure on parents and carers in the disability sector.

“It’s a multi-system failure,” she said.

“The systems designed to support us and assist us are complex, difficult to navigate, and organisations who provide support find it difficult to gain skilled staff.” […]

• From Disability Scoop: “Trump Wanted To Cut Disability Programs. Congress Just Said No”

After months of uncertainty, federal lawmakers approved a spending package that rejects Trump administration efforts to alter the Individuals with Disabilities Education Act and do away with some disability programs.

President Donald Trump signed a bill this week to fund much of the federal government through September. The deal brings to a close a tumultuous period for disability programs punctuated by two government shutdowns.

[…]In his budget request last year, the president called for altering IDEA to allow federal funding for certain programs to be consolidated in order to give states more control over spending, but Congress chose not to act on that plan. Advocates said that if such a change had gone through, it would have affected Parent Training and Information Centers, technical assistance centers, training for new special educators and general educators, assistive technology and accessibility supports and more.

[…]Trump had also urged Congress to eliminate funding for University Centers for Excellence in Developmental Disabilities, or UCEDDs, and some programs serving people with disabilities at protection and advocacy agencies, but lawmakers chose to maintain them.

[…]Alison Barkoff, a health law and policy professor at George Washington University who previously led the Administration for Community Living [said:] “Advocates will need to ensure that agencies quickly disburse critically needed appropriated funding and that the administration heeds to the directives of Congress regarding agency reorganizations.”

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

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• From CNN: “A Texas man detained by ICE was his disabled son’s sole caregiver. His son will be laid to rest without him”

Maher [Tarabishi], Wael’s primary caretaker, has been in federal detainment since October, separating him from his son as he battled severe health complications from a serious and rare inherited disorder.

But despite the family’s public pleas for Maher’s temporary release, Immigration and Customs Enforcement officials denied their request, his attorney said.

Now the family is preparing to bury 30-year-old Wael without Maher. The son spent his life [with] Pompe disease, which leads to severe muscle weakness and heart problems.

[…]ICE’s decision came three months after Maher was detained during a routine immigration check-in in Dallas. Since then, his family has held a news conference and publicly pleaded for federal immigration officials to temporarily release him from the Bluebonnet Detention Facility in Anson, Texas.

At first, they hoped Maher could be released to provide the 24-hour specialized care for Wael that only he was trained to do. But in Wael’s last days, they were holding hope Maher could at least say goodbye to his son in person.

[…]Shahd Arnaout, Wael’s sister-in-law, told CNN the family struggled to care for Wael with his father in ICE custody.

Maher was the one who bathed Wael, changed his clothing, and helped administer food and medication through a tube, Arnaout said.

“He was the one who knew, when his fever went up, what to give him right away,” Arnaout told CNN. “We had to ask multiple doctors to come and see what (medicines) to give Wael because Maher was not there to react quickly.”

At a December news conference, a statement from Wael was read aloud in which he described the relationship with his father.

“He’s the one who keeps me alive when I’m at my weakest,” Wael said in the statement, CNN affiliate WFAA reported. “Without him, I am nothing. Without him, I cannot survive.”

[…]He was rushed to the hospital twice: once in November with sepsis and pneumonia, and again in December with a stomach infection caused by a displaced feeding tube, his family said in a statement. He remained in the ICU at Methodist Mansfield Medical Center in a suburb of the Dallas-Ft. Worth metro area for the next month, the family said. He died on January 23.

[…]In the hours before he died, Wael’s wish was to see his father again. On the day he passed away, [Maher’s attorney Ali] Elhorr went to meet with an ICE official to ask if Maher could come to the hospital to see his son, the family said in a statement. That request was denied, they said.

[…]Maher arrived to the United States in 1994 from Kuwait, where he was living at the time, on a tourist visa as he fled violence, Arnaout said. Several family members were already living in the United States, she said. Maher’s native country is Jordan.

[…Tricia] McLaughlin, the DHS spokesperson, said in a statement to CNN Maher had been allowed to remain in the US illegally for nearly 20 years despite being ordered by an immigration judge and the Board of Immigration Appeals to leave.

An immigration court ordered Maher’s removal in 2006, but he was allowed to stay in the US because he was his son’s caretaker and was required to attend annual check-ins with ICE, Elhorr said.

[…]In her statement, McLaughlin referred to Maher as a “self-admitted member” of the Palestine Liberation Organization,[….] Arnaout said the family denies Maher was a part of the Palestine Liberation Organization.

Maher has always followed the proper guidelines to stay in the US and showed up to every required check-in with immigration authorities, Arnaout said. […]

• From The 74 via The 19th: “Children with disabilities particularly vulnerable to Minneapolis ICE crackdown”

[…]Idil Ahmed, who lives near the epicenter of the daily raids and protests, worries about her 6-year-old autistic daughter having a meltdown during an encounter with Immigration and Customs Enforcement agents.

“If they stop us, all hell will break loose with my child,” Ahmed said. “And there is no talking to these people.”

Parents tell The 74 they have no faith, after federal agents ripped a disabled, autistic woman from her car and, according to school officials, used a 5-year-old as bait this week to lure his mother from their home, that immigration officials would be patient with a child who can’t immediately respond to orders.

[…]They and other families with special needs kids have missed school, skipped doctor’s visits and, in many cases, are not getting the occupational, physical and speech therapy services that help their children manage their lives and progress academically.

Ahmed said her daughter missed three consecutive weeks of occupational therapy because her therapist was too fearful to enter their neighborhood.

[…]And while multiple districts are offering remote learning to families afraid to leave their homes, online instruction isn’t a viable option for children who need a team of skilled school staff to access their education.

“It’s not a solution for us,” said Anisa Hagi-Mohamed, founder of an autism advocacy group called Maangaar Voices.

[…]A spokesman for the Department of Homeland Security, which oversees ICE and CBP, said he was working on a response as to whether agents are trained to interact with autistic children and others with disabilities. Minnesota law requires autism training for peace officers but this does not apply to ICE and CBP, Minneapolis advocates say.[…]

• From Fox 13 News: “Unspent millions, forgotten children: Inside Florida’s disability care crisis”

When [Tampa mom] Yasmina [Halim] quit her job to care for Lily full-time and applied for home health services the state provides to families like hers, Florida placed the terminally ill child on a waitlist.

“It’s like my child doesn’t matter,” Yasmina says. “She’s just a number.”

The average wait? Eight and a half years.

Lily isn’t alone. More than 21,000 Floridians with severe developmental disabilities are stuck on the state’s waitlist for home-based care—some for more than a decade.

[…]Over the past four years, APD returned more money to the legislature than it received for reducing the waitlist—roughly $8 million more. Currently, the agency sits on approximately $360 million in unspent state funds. Had APD used that money as intended, it would have triggered more than $520 million in federal matching funds.

[…]Lawmakers required APD to approve or deny crisis applications within 15 days. Families report it still takes months. The legislature mandated an online application to speed things up. However, the online form doesn’t include an option for crisis claims—sending families back to pen and paper.

[…]Lawmakers created a program allowing parents on Medicaid to get trained and paid as caregivers for their disabled children. For families like the Olives, it could provide financial relief—except the program pays just enough to disqualify them from Medicaid.

[…]After three years of waiting, Yasmina decided to institutionalize Lily so she could return to work and pay the bills.

“I just could never imagine that I’d have to put my child in an institution just so I could get a job,” she says. “I could never imagine how I could sleep at night without my child next to me.”

However, because of the provider shortage and the complexity of Lily’s disease, no institution would accept her. The state then granted crisis status and approved home-based care—the less expensive option.[…]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

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• From Milwaukee Journal Sentinel: “Wisconsin mother fights school, police over TikTok of disabled child”

A Wisconsin mother is pushing back after police visited her home and school officials threatened a defamation lawsuit over a viral TikTok video showing her daughter’s experience at a Pittsville School District event.

The video, posted to TikTok Dec. 17, shows Amanda Vogel’s daughter, who uses a wheelchair, seated off to the side during a school concert as students stand together in risers nearby. Vogel’s daughter was in 4-year-old kindergarten at the time the video was recorded in 2023.

"This was the moment we decided to homeschool," reads text edited onto the video, which has racked up 11.6 million views as of Jan. 16. "Watching her be placed off to the side while her peers stood together, and realizing no one noticed before the concert, was it for us," Vogel added in the caption.

In a letter to Vogel Dec. 19, the law firm representing the Pittsville School District said that her video was "harassing and defamatory" as well as included the faces of staff members and "sufficient information" to identify the family as residents of Pittsville, a rural community about 130 miles west of Green Bay.

[…]"Police should not be showing up at people's homes for things they post on social media, especially when they aren't threatening," Brewer said in an interview. "It's really inappropriate for government entities, whether it's a school district or law enforcement, to intimidate individuals into not speaking."

[…Pittsville School District Administrator Jason] Knott said the district "vehemently disagrees with many of the statements and allegations presented online and in news reports" about the situation.[…]

• From Idaho Statesman: “Idaho changes rules on therapy. What will it mean for kids with disabilities?”

In 2020, Evan Kates was struck with a devastating brain aneurysm. It came out of nowhere, and left him with a severe seizure disorder and profound developmental disabilities. Evan, then 5, was left reliant on a feeding tube, and doctors told his family he would probably never talk again.

But years of physical, occupational and speech therapy have made a huge difference, his mother, Brooke Kates, told the Idaho Statesman. Evan has been able to re-learn how to eat solid foods and how to speak in sentences.

“We know a full recovery is not something that’s going to happen, but the goal is always progress where it’s possible,” Kates said during one of Evan’s appointments on Wednesday. Therapists fitted him for a wheelchair that day that would allow him to switch between sitting and standing positions to develop more muscle tone in his legs.

Such progress relies on the Boise family’s ability to access and afford multiple therapy appointments each week. Evan even spent part of his 11th birthday, on Tuesday, at a therapy appointment, Kates said.

These days, Kates worries her son’s access to such care could be in jeopardy. In early January, she, other parents and care providers were caught off-guard by an announcement that the Department of Health and Welfare had started to place caps on the number of therapy appointments it would allow Medicaid to cover. Patients and providers will still be able to request appointments beyond those caps, but they must receive prior authorization from the department.

[…]Families in Idaho who qualify for Medicaid will be limited to 20 sessions each of occupational, speech and physical therapy per year unless their providers get prior authorization from Health and Welfare to offer more sessions, according to the department’s Jan. 8 announcement. Providers and advocates told the Statesman that this will add more paperwork and red tape to the process and risks further clogging up a system that is already dealing with cuts.

[…]Providers and disability advocates worry that the added burden could force providers to limit the number of Medicaid patients they’ll accept. The families that spoke to the Statesman all said their children needed far more than 20 therapy sessions per year to progress.

“It’s going to strain an already-strained system,” [Josh Wilde, a pediatric occupational therapist in Idaho Falls] said. “Imagine having a child with severe special needs and not being able to get the help you need.”[…]

• From The Den: “New program expands early autism diagnosis for children in rural Georgia”

Children in rural Georgia now have earlier access to autism diagnosis, which is an important step that can change the trajectory of a child’s life.

With assistance from the state, the Mercer University School of Medicine Early Autism Detection Program is expanding access to timely, evidence-based autism evaluations for families in rural communities, bringing high-quality care closer to home.

[…]For many children, autism is not officially diagnosed until they reach school age. By then, opportunities for early intervention may have been missed. Research shows that when autism is identified before age 3, children can make meaningful gains in communication, learning and social development that can shape their long-term outcomes.

[…]At the center of this effort is the EarliPoint™ Evaluation, an innovative diagnostic tool designed for children between 16 months and 30 months of age. Using eye-tracking technology and biomarker-based measurements, EarliPoint evaluates a child’s looking behavior to provide objective data that supports early, accurate autism diagnosis.

[…]Until now, families in rural areas often faced long waitlists or had to travel far from home to pursue evaluation.

“Making this diagnostic tool available locally really changes access to care for families in rural communities,” said Krista Kelly with the Babies Can’t Wait program in Dublin. “There was nothing here before. Having this test available lets families know their fears and concerns are seen.”[…]

• From Advertiser-News: “New law eases guardianship process for parents of disabled children”

When Lee-Ellen Pisauro of Sandyston marked her son Sam’s 18th birthday on Dec. 22, 2021, it was not a celebration but the start of a legal struggle that left her unable to make medical and care decisions for her child with Down syndrome.

Under previous New Jersey law, parental authority ended when a child turned 18, even if the child required daily support and advocacy. Although Sam’s needs did not change overnight, Pisauro was required to navigate a lengthy guardianship process before she could resume decision-making on his behalf.

“Professionally, I had peripherally supported families through the guardianship process; however, it was not until I navigated it personally as a parent and presumptive guardian that I experienced the unintended consequences of the procedural timelines embedded in the prior law,” Pisauro said.

[…]“Sam was without a guardian until March 22, 2022,” she said. “During that period, my husband and I were unable to manage some of his health care needs, access his medical benefits, or obtain documentation for time-sensitive diagnostic testing.”

[…Assemblyman Michael] Inganamort sponsored legislation allowing parents of children with developmental disabilities to apply for guardianship up to 180 days before their child turns 18. The bill, was recently signed into law.

“Parents like Lee-Ellen who have children with medically complex needs or require everyday decision-making assistance are some of the most selfless and tireless advocates I have ever had the pleasure to serve,” said Inganamort, R-Morris. “They shouldn’t have to battle a legal system to ensure their child remains protected.”[…]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

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• From CBC News: “This Barbie is autistic. Some parents love her, but others say Mattel missed the mark”

[…]Toymaker Mattel unveiled its autistic Barbie on Monday, with an array of features that are meant to depict visual characteristics and accommodation accessories attributed to people on autism disorder spectrum — all of which were decided on after extensive consultations with the Autism Self Advocacy Network.

[…]It’s “so important and such a cultural moment” for people like Vancouver Island-based social media influencer Katherine L’Etang, the mother of two autistic children who was diagnosed herself later in life.

The 34-year-old is not alone in celebrating the arrival of a doll that shares similarities to her and her young daughter. But many others feel that Mattel missed the mark and that an autistic Barbie could serve to further stereotypes and misconceptions about a disability that is often invisible.

Comments on the Autism Self Advocacy Network’s Facebook page were mixed, with some suggesting that Mattel relied too heavily on having the Barbie “look” autistic and presenting a one-size-fits-all doll.

“You cannot tell by looking at someone whether they are autistic,” said Julie M. Green of Kingston, Ont. “In fact, you know, any Barbie could be autistic Barbie.”

Green is the the 49-year-old mother of a teenage boy who was diagnosed with autism as a child, but she also received her own diagnosis about five years ago.

[…]Green suggests it may have been "more inclusive" to have simply created a broader line of Barbie accessories that autistic children could use to customize the dolls in a way that represents themselves.[…]

• From The New Jersey Herald: “NJ wants to make school buses safer after disabled students' deaths”

Spurred by the deaths of a Morris County boy and other children with disabilities, state lawmakers have voted for a task force to study the school bus industry that transports thousands of special-education students in New Jersey.

[…]“Several tragic and preventable incidents involving vulnerable children with disabilities on school buses have underscored the need for reforms that will put the safety of New Jersey kids first,” one of the bill’s sponsors, Assemblyman Al Barlas, R-Essex, said in an announcement. “No student on their way to or from school should be harmed because of a lack of training, communication or accountability.”

[…]The group would make recommendations on training, staffing and certification standards for the state’s estimated 1,800 student transportation companies. It also would look at ways to improve communication with students’ families. Findings must be reported to lawmakers within a year, the announcement said.

[…]There have been a string of deaths and incidents involving medically fragile students on school buses.

[…]In February 2023, 19-year-old Matthew Rossi of East Hanover, who had muscular dystrophy, died after being found unresponsive after his bus ride home. A nurse who accompanied him on the bus pleaded guilty last year to endangering another person and neglect of a disabled person. He was sentenced to 90 days in prison and agreed to give up his license.

The Rossi family’s lawsuit and advocacy helped spur earlier legislation, including a 2025 Senate bill that required cameras and GPS tracking on school buses and mandated that staff make 911 calls during life-threatening emergencies.

[…]Matthew’s mother, Anabela Rossi, continues to lobby and has said existing policies fail to protect the “most vulnerable” students, referring to the 8,500 students with disabilities who are transported to out-of-district schools.[…]

• From The Minnesota Star-Tribune via DisabilityScoop: “As People With Disabilities Live Longer, Facilities Rework Services”

[…]More Minnesotans with developmental and intellectual disabilities are aging and need more involved care, leaving more to soon need group homes and other residential facilities as their families, who often care for them, also age. Yet, facilities are facing stagnant state and federal funding and a national crisis of staffing shortages.

While the majority of people with developmental or intellectual disabilities are cared for by their families, the average life span for people with those disabilities has increased from 66 years in 1950 to 78 years in 2007. And it keeps rising, thanks to medical advances and improved living conditions, said Tamar Heller, who directs the Rehabilitation Research and Training Center on Aging with Developmental Disabilities at the University of Illinois at Chicago.

The number of people with disabilities over the age of 60 is projected to nearly double from more than 650,000 in 2000 to 1.2 million by 2030, she said.

Yet with more than 25% of family care providers older than 60, those numbers indicate a seismic shift in caregiving is coming, Heller said, and more of them will soon need group homes and other residential facilities.

“There are already waiting lists (for facilities),” she said. “And if more families can’t do it, they’ll need help.”

The demographic trends illuminate an emerging need for facility staffing in the coming years, Heller said.

[…]While 10% to 20% of siblings assume the care of adults with disabilities after parents die, the need to start planning for an influx of older adults with disabilities into facilities “is now,” Heller said.

[…]“We are looking at the first generation of people with disabilities outliving their parents,” [group home director Jerry] LeVasseur said.[…]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

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When my twins were born, I learned that statistics don’t really matter to the individual. They may be helpful on a pubic health scale, but if you only have a one percent chance of an outcome happening, does that really matter if it happened to YOU? It is 100 percent of your experience.

All of our kids are one in a million — nay, one in a billion! — and so is the experience of parenting them. Thanks to their existence, we get such a unique lens through which to view the world. Our lives are richer, our stories more complex and our experience rare, unique and beautiful.

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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 Could Limit Access For People With Disabilities, Advocates Warn”

[…]Congress approved sweeping legislation last summer that includes nearly $1 trillion in Medicaid cuts. Central to the plan are so-called “community engagement” requirements stipulating that many Medicaid beneficiaries must prove that they are working, volunteering or going to school in order to qualify for coverage.

Now states are tasked with establishing systems to determine whether beneficiaries meet the new standards and there are big questions about how they will do so.

[…]The Centers for Medicare and Medicaid Services issued initial guidance in December. It specifically exempts individuals who are “medically frail” or who have “special medical needs” including those with physical, intellectual or developmental disabilities from the new rules. Parents, guardians, caretaker relatives and family caregivers of those with disabilities are also exempt.

[…]“The guidance provides no additional detail and simply re-states what is in the statute,” said Michael Lewis, vice president of policy at the American Association of People with Disabilities.

[…]A guide issued recently by the Bazelon Center for Mental Health Law and the Corporation for Supportive Housing […] recommend[s] that states:

- use existing data to verify eligibility rather than mandating new paperwork,

- provide assistance with applications and renewals as a reasonable modification

- and use broad definitions of “medically frail” and “special medical needs.”

States should also allow individuals to self-attest for exemptions and ensure that their notices, online portals and other communications are accessible, the guide indicates.[…]

• From LA Times: “Behind his smile, a silent crisis: Parents seek answers after autistic son’s suicide”

When Anthony Tricarico was diagnosed at 7 with autism spectrum disorder, his parents, Neal and Samara, were told that he might need extra support at school, so they made sure he got it. When doctors suggested therapies for his speech and motor skills, they sought those out too.

But when their kind, popular, accomplished boy began to experience depression and suicidal ideation as a teenager, no one told them that the same thinking patterns that powered many of Anthony’s achievements might also be amplifying his most harmful thoughts, or that the effort of masking his autism could be hurting his mental health.

None of the people or organizations they contacted for help said Anthony might benefit from therapies or safety plans adapted for autistic people, or even that such things existed. They did not say that he might not show the same warning signs as a non-autistic teenager.

And only after he died from suicide in May 2024 did the San Diego County couple discover that autistic kids — particularly those like Anthony, whose disability is not immediately apparent from the outside — are more likely to think about and die from suicide, and at earlier ages, than their neurotypical peers.

[…]Children across the autism spectrum are far more likely to struggle with mental health conditions than their allistic, or non-autistic, peers. A 2021 study of more than 42,000 caregivers of children ages 3 to 17 found that 78% of autistic children had at least one co-occurring psychiatric condition, compared with 14% of non-autistic kids. Contributing factors include the stress of living in a world that’s sensorially overwhelming or socially impenetrable. Lights, noises, smells and crowds that others barely notice may cause incapacitating anxiety.

[…]There’s no clear protocol for families like the Tricaricos. There are therapists and psychiatrists specially trained in autism, but not enough to meet demand.

Researchers are, however, looking for ways to tailor existing therapies to better serve autistic kids, and to educate healthcare providers on the need to use them.

One starting point is the Columbia-Suicide Severity Rating Scale, the standard that healthcare professionals currently use to identify at-risk children in the general population. […]Schwartzman recommends that providers use a combined spoken and written screening approach at intake, since some autistic people find text questions easier to process than verbal ones.

[…]Another candidate for adaptation is the Stanley-Brown safety plan, a reference document where patients list coping strategies, helpful distractions and trusted contacts on a one-page sheet that can be easily accessed in a crisis. Research has found that people with a completed plan are less likely to act on suicidal thoughts and more likely to stick with follow-up care. It’s cheap and accessible — free templates in multiple languages can be easily found online.

[…]“Suicide prevention for autistic people is being accepted for who they are, being able to be who they are without masking,” Morgan said.[…]

• From MedicalXPress : “Why disabled young people with life-shortening conditions need better support for intimacy”

[…]For the past 15 years, I have worked with colleagues in the Sexuality Alliance, which advocates for the sexual and reproductive rights of disabled young people living with life-shortening conditions.

Our research, which was co-produced with disabled young people, shows that many feel unsupported and overlooked when it comes to their sexual and reproductive lives. Families and caregivers often report feeling unprepared.

In many cases, they had been told that their child would die, only to find that they were continuing to live, becoming teenagers and then adults. Professional staff, including nurses, doctors and therapists, were often unaware of these issues or felt anxious about addressing them.

[…]The young people we interviewed told us that they want to live life to the full, and that this includes exploring sexual intimacy and forming romantic relationships. They described this as a normal part of growing up, and many saw it as a rite of passage. They also explained how important intimacy can be for both physical and emotional well-being.

[…]Addressing the sexual and reproductive citizenship of disabled young people who were not expected to live into adulthood is sensitive work because it confronts longstanding taboosaround sexuality, youth and death. Disabled people frequently reported feeling marginalized, infantilized and treated as asexual. Many participants felt they were seen primarily as vulnerable rather than as people with desires, agency and rights.

[…]As part of our work, we co-produced resources to help young people and caregivers talk openly about sex and intimacy.

[…]Despite the risks and uncertainties they face, many young people see intimacy and relationships as central to their well-being and identity.[…]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

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Before I popped my earbuds in, a bro-y voice came over the gym’s sound system, confidently explaining how to get fit.

“You gotta want it!” he exclaimed. I rolled my eyes.

I am a policy nerd. I’m not a fitness expert. Perhaps I shouldn’t even try to give advice on this topic.

But it’s a New Year and many folks have new fitness goals. Medical mamas also have unique barriers to this activity. I certainly have struggled with it. Despite working at a fitness center all four years of college, I never found an exercise routine I actually stuck with.

Until now.

As a 42-year-old, I have finally found a routine that has me exercising regularly and making significant strength and cardiovascular gains. I haven’t lost a pound. I don’t think anyone has noticed that I look different. But every time I leave the gym, I feel nine feet tall and after a few days without it, I’m itching to go back.

What changed?

Well, in a nutshell: You gotta want it.

Find your motivation

When I say “you gotta want it,” I don’t mean “you have to make yourself want it.” I mean “you have to find out what you want and do that.” Find what you enjoy, and make movement part of that.

What are you missing in your life? What would you get off the couch for? Maybe it’s friends, maybe it’s dancing, maybe it’s nature. Whatever lights you up is what will keep you coming back to it.

I discovered I want a lot of things — and together those motivations are what keep me going back. (None of them are the traditional “look better in a bikini” so if that’s not your motivator, that’s OK.)

I’ll be honest, my initial motivation was fear. Fear is a powerful motivator. As I aged and my son grew, he got too heavy for me to carry. The thought that we could be in a burning building and I would have no way to get him out was eating away at me. One of my motivations was to be able to leg press our combined weight so that I would know I could carry him on my back.

I hit that goal with a personal record of nine reps of 260 pounds on Dec. 19, less than three months after I started. One of the things I have been most surprised about is how little time it takes to see results with consistency.

What I do

My routine will certainly not work for everyone. This is not a fitness plan, but a permission slip to find what works for you. I’ll explain it here as an example, but look for what is missing in your life and build a routine around that.

I only go to the gym two or three times a week. I go whenever I have a spare two hours — roundtrip — which in the medical mom life is inconsistent. (I’ve tried classes and too often I can’t make it.) Being able to leave the house is important. (I’ve tried floor routines but my house is too small and loud — and people and pets need too many things too often.) Being outside is nice. But too hot, too cold, too rainy or too anything can kill my motivation. (My gym is affordable due to the Active & Fit Direct program — check if your health insurance has something similar on their website.)

The first 20 minutes, I’m on an elliptical listening to LOUD, FUN, EMPOWERING music. I cannot stress enough how a good playlist can make or break a session. My strides per minute on the elliptical are 100-120, which is not fast — and that’s the point. I actually have to slow myself down if I get carried away with the music. I’m just warming my muscles up and going for a nice GABA-A release — the calming, regulating effect that comes from steady, consistent bilateral movement.

Next, I do six to nine weight machines, which takes about 20 minutes. There are pictures and instructions on every machine if you don’t want to use a coach. I started with low, easy weights then pushed higher with each session that I was able to do at least 10. I haven’t had any injuries. These days, I only do one set to failure — the point that I can’t do another rep with good form — and keep track in a note on my phone. The weight at which you “fail” pushes your muscles to the breaking point so they can rebuild stronger. It’s been fun to see my progress in little numbers that go up.

Then, I change my playlist to something a little more chill, go to the mat and do whatever stretches feel good for about 10 minutes. One thing adults don’t get to do enough is roll around on the floor. Try it. It’s actually fun and your body will reward you with happy chemicals.

Finally, I head to the hot tub and sauna. Yes, there are days when the thought of getting warm is the biggest reason I show up!

Gear

Good gear can make the process more enjoyable — enjoyment equals motivation. I used these items as small rewards, only buying something new after I showed up for a session. You don’t need these items, but if they are helpful, these are my Amazon affiliate links.

• Gym bag: I like this one because it has a pocket for everything.

• Mesh top: I don’t like to sweat. This top is cute and I love the length.

• Yoga pants: These have pockets on the side for your phone, a feature that I now consider essential.

• Shower shoes: These have tons of holes and dry quickly.

• Water bottle: It is very durable. (Ask me how I know….)

• Athletic shoes: I don’t have a link but I found Pumas at Costco for $28. Steal!

Do what works

As a medical mama, I don’t have room in my life for one more “should,” one more “have to,” one more “ought to.”

When I found ways to make it fun, enjoyable and not too hard, that’s when I started showing up consistently. Building consistency and confidence in your routine is much more important than “pushing” yourself. I wish for you a movement method that feels fun and enjoyable. I want you to want it.

Because fear is a powerful motivator. But so is love.

My New Year’s resolution is to make more short-form video! Be sure to follow Medical Motherhood on TikTok, Facebook and Instagram.

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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 Washington Post: “No-show buses, long waits: Will GPS finally help D.C.’s disabled students?”

Jennifer Lewis and her family have built their lives around the uncertainty of their daughter’s school bus schedule.

Lewis and her husband, Josh, both 49, wake up at 4:30 every school morning, about three hours before the bus is scheduled to take 15-year-old Kate, who has multiple intellectual and physical disabilities[…] Then, because of the bus’s unpredictable arrivals, they make sure at least one of them is home during a two-hour span every afternoon in case Kate arrives early, on time or late — all possibilities on any given day. Earlier this year, Josh quit his federal government job after a 27-year career in part to make that easier.

The Lewises are among the thousands of D.C. families who have a child with disabilities who takes a bus to and from school each day. Families say the trips are often made harder because of frequently erratic arrivals and undependable communication from the district.

This month, the Office of the State Superintendent of Education [OSSE], the agency required by federal law to transport students with disabilities from home to school and back again, said it had agreed to a one-year, $2.1 million contract with Tyler Technologies to create a GPS system that will allow parents to track their students and automatically notify them about schedule changes.

[…] Raphael Park, OSSE’s interim transportation director, acknowledged the agency’s shortcomings as D.C. Council members grilled him at a Dec. 3 oversight meeting.

“What parents are asking for is not unreasonable,” Park said.[…]

• From 12 News: “Florida deputies stop woman in alleged plan to kill herself, disabled great-granddaughter”

Content warning murder/suicide: I don’t usually share stories like this, but the desperation in a broken system sometimes needs to be made plain. If you or someone you love is considering suicide, call 9-8-8 for help.

The discovery of a suicide note led deputies to a shocking scene, where they say an apparent murder-suicide attempt involving a woman and her disabled 13-year-old great-granddaughter occurred.

The Volusia County Sheriff’s Office said Deborah A. Collier, 69, has been charged with attempted first-degree murder.

[…]The child, who deputies say ingested pills Collier gave her, is in stable condition at an area hospital, according to VSO.

Investigators say Collier’s purse contained prescription medication bottles and a typed note indicating her intent to end both her own life and her great-granddaughter’s, citing stress on the family. Detectives said the child requires 24-hour care due to severe disabilities and has been raised by Collier and her husband since birth. Collier reportedly opposed placing the child in an assisted living facility, believing no one could care for her like family.

Authorities say Collier’s desperation over the ongoing hardships led her to plan the act. She was booked into the Volusia County Branch Jail overnight and is being held without bond.

And now for some happier news…

• From The Chosun Daily (The English-language version of Korea’s largest newspaper: “Polio-Stricken Doctor Donates 900 Million Won [More than $620,000], Finds Happiness in Giving”

[…]Born as the youngest of six siblings, [Director Kang Byung-ryeong] became paralyzed below the waist from polio at the age of two. Until age five, he could only lie down.

[…]Although he scored highly on the college entrance exam and applied to a Korean medicine college, he was rejected with the reason, "A severely disabled person cannot keep up with classes." After many difficulties, he entered Dongguk University College of Korean Medicine[…]

However, after graduating from the Korean medicine college in 1987, no clinic hired him. The following year, he borrowed 40 million won [about $100,000] and opened a clinic[…]. The building owner, upon hearing his situation, reduced the deposit to half the market rate. In the early days of opening, he stayed and ate at the clinic because he had no money to rent a room.

He began donating in 2002 after receiving a suggestion from the principal of his alma mater, Dongnae High School, to “establish a scholarship foundation.” At first, he said, “I’ll do it when I have more leisure.” However, persuaded by the principal’s words, “It’s important to start small now,” Director Kang borrowed 10 million won [about $12,000] and gave the first scholarships to 10 Dongnae High School students. He said, “If I hadn’t started then, I probably wouldn’t be donating even now. When I, who had only received help, started giving back, I found myself smiling more than before.”

[…In total, Director Kang has given 900 million won, the equivalent of more than $620,000.]

[…]”Strangely, after giving, money came in more than expected, and above all, it became a great foundation for my children’s growth." Two of his three children—a son and two daughters—who joined him in donation and volunteer activities became doctors, and his youngest son is pursuing a Ph.D. in biomedical engineering at Yale University.

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

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It the time of year for reflection, where we take stock of where we have been and muse about where we are going.

This is also reflected in the most-read Medical Motherhood issues of the year. All three of these issues garnered over 1,000 views, making them the top issues. In case you missed them, or in case you need a reminder, here they are again.

In January, I brought you the story of Tennyson Ross and his mom Calli Ross. Together, the pair were a frequent sight at the Oregon State Capitol as they lobbied for paid parent caregivers. Their plea took a particularly dramatic turn when a medical crisis and Calli’s quick, calm action showed state senators exactly the kind of care medical mamas have to be prepared for on short notice.

The scene made an impression, but ultimately Tensy’s Law — which would have expanded Oregon’s tiny paid parent caregiver program from 155 spots to more than 1,000 — failed to pass.

Soon after the state legislative session ended, on the federal level, Congressional Republicans passed the One Big Beautiful Bill, now often called H.R. 1. We are still figuring out the trickle-down effects of this new tax and spending law. However, there were a few things that were known at the time and a lot of fear-mongering from journalists who didn’t know how to interpret the dueling narratives. I unpacked all of that in the July 6 issue:

More recently, I dove into how Oregon could react by cutting disabled kids services in the Dec. 7 issue. Spoiler alert: medical mamas across the country are going to have to fight to make sure states make the right call.

But that’s OK, because we have oodles of free time, right? Except, no, we don’t. Fortunately, the American Academy of Pediatrics this year formally recognized the role of parent-caregivers and their need for support. The AAP report underlined the need for paid family caregivers, telehealth appointments, physician compensation for care coordination and other family-friendly models of health care. Read more in the Aug. 31 issue:

It has been a year of ups and downs. In 2026, I anticipate an even greater need for the public to understand Medicaid law and the rights and needs of disabled children and their families. I’ll do my small part to bring you news and information vital to this community, in a way that hopefully catches people’s attention without sliding into clickbait or fear mongering. Thank you for being with me through this journey.

I wish you and yours a very happy new year.

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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 WOWT (Nebraska): “Proposed state cuts could eliminate care hours for families with disabled children”

Aaron Kuecker’s two daughters have cerebral palsy and need constant care. The family currently receives 112 hours a week of state-funded care, but proposed cuts would slash that to 40 hours.

The Kuecker family adopted 19-year-old Chitti and 10-year-old Saha from India five years ago. Both daughters have cerebral palsy, and Chitti has a rare epilepsy called Lennox-Gastaut Syndrome.

[…]Aaron Kuecker works as a full-time teacher with Omaha Public Schools while Katie stays home with the children. The care they need goes beyond the 112 hours they already receive.

“That leaves us with a decent chunk of time that is considered unpaid labor… or Katie would have to go and get a job,” Aaron Kuecker said.

By cutting their hours down to 40, the Kuekers could lose close to $1,000 of income every month.

“Do we have to sell our house and move somewhere else? How do we find a thousand dollars?” Aaron Kuecker said.

The Kuekers started an online petition that has gathered over 1,600 signatures. [As of this publication, over 2,400.] They are among many families trying to influence the decision.

“Hopefully the DHHS will listen and reconsider this,” Aaron Kuecker said.[…]

• From Alabama Political Reporter: “Alabama settles lawsuit over institutionalizing disabled children”

A 2021 lawsuit against the state of Alabama over the state’s practice of unnecessarily institutionalizing children with mental health disabilities in psychiatric residential treatment facilities, PRTFs, appears to be coming to a close after a preliminary settlement agreement was reached late last week.

The lawsuit, brought against the state by the Alabama Disabilities Advocacy Program, Children’s Rights and the Southern Poverty Law Center, SPLC, accuses the Alabama Department of Human Resources, DHR, of violating the Americans with Disabilities Act, ADA, by “isolating children in highly rigid and often dangerous settings instead of meeting their mental health needs in a loving home or community-based setting.”

[…]per the terms of the settlement, Alabama will be required to institute standardized assessments for children at risk of PRTF placement, requiring physician certification of need in 95 percent of cases. Additionally, the state agreed to implement six-month quality reviews to ensure children’s care plans meet professional standards and to place children in community-based and family-like placements, including kinship care and therapeutic foster care, when appropriate. Meanwhile, the state will cap congregate care in shared living facilities at no more than 7 percent of children in state custody.

[…]“This agreement is a long overdue win for children and families across Alabama,” said Lindsey Frye, senior staff attorney at Children’s Rights. “Children with disabilities deserve to grow up in safe, loving family homes, not locked away in institutions. For too long, Alabama’s overreliance on psychiatric facilities has inflicted lasting harm.[“…]

• From CTV News (Canada): “Christmas joy for children receiving end-of-life care in Montreal”

[…]Le Phare, located in Montreal, serves approximately 200 families and has 12 beds on site to provide respite for parents or to welcome them when their child is receiving end-of-life care.

[…]For many of these children, their life expectancy is unknown because their disease is rare.

[…]An employee of Le Phare who adopted a child with multiple disabilities three years ago wished to remain anonymous, as this is a personal matter. Although she has a background as a nurse and has been “immersed in multiple disabilities” since she was young, the reality of caring for a severely disabled child was very different from what she had anticipated.

Her child does not have a degenerative diagnosis, but due to his neurological fragility, he is more prone to complications. In particular, he has epilepsy, which affects his cognitive, motor and socio-emotional development.

At Christmas, travelling from one family to another is exhausting, says the mother.

“We go left and right, but that means lugging around a wheelchair and all the protocols in case they start to feel unwell. It’s like moving house, even for a Christmas party. Is it worth it? I’ll do it anytime, but it takes a lot of organisation,” she says.

[…]She remembers one evening, on Dec. 31, when the employees counted down the New Year in the room of a dying little boy with his family (at their request).

“As much as these moments can be difficult for families, they are also moments that families cherish deeply. They take what they can get. It can be emotional knowing that it’s the last Christmas. At the same time, they have that last Christmas, so they take everything they can to enjoy it. It’s a privilege as an employee to be able to share these intimate and beautiful moments with families,” she said.[…]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

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Quick note before we get to the good stuff!

I want you to know how much of a difference supporting small creators makes. Thank you for being here, for subscribing and thanks especially to our three new paid subscribers, who were enough to push Medical Motherhood into 13th on the list of Rising Parenthood Substacks! We really appreciate your continued support in whatever capacity you have. Merry Christmas and happy holidays!

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Medical Motherhood’s news round up

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• From The 74: “Before Special Ed, There Was the School-to-Asylum Pipeline. How One Lawsuit Helped End It”

[…]It was 1969. Two men from the Pennsylvania Association of Retarded Children made an appointment to meet with the young lawyer with a reputation for taking pie-in-the-sky cases more experienced attorneys wouldn’t touch. […](In the interest of historical accuracy, in portions of this article The 74 uses terminology now recognized as offensive.)

[The lawyer, Thomas] Gilhool had never heard of the organization, now known as The Arc of Pennsylvania, but he knew more than most people about Pennhurst. At the time, children could be deemed retarded for a host of reasons: for having an intellectual disability, but also for seizure disorder, cerebral palsy, birth defects, bad behavior, even not speaking fluent English.

Public school was often the first stop on a short path to institutionalization. Children would enroll, quickly be deemed “ineducable” and consigned to places like Pennhurst, where forced labor, neglect and violence often cut their lives short.

Gilhool’s brother Bob had been committed to the asylum, the attorney told his stunned guests.

[…]Eventually, they should ask the courts to close the facility. But the first task, Gilhool told his new clients, was to establish disabled children’s right to an education.

Prohibiting schools from using asylums as dumping grounds was the initial step toward shutting down the pipeline of new residents and triggering the creation of alternatives — including the classroom instruction that would help children fulfill their potential.

[…]The 1971 case Gilhool filed and won, PARC vs. Commonwealth of Pennsylvania, was swiftly copied by disability advocates in dozens of states. The settlement — which anticipated the sundry ways in which children like Bob Gilhool were excluded from school — became the template for one of the strongest of the era’s civil rights laws, enacted by Congress in 1975.

Fifty years after passage of what is now known as the Individuals with Disabilities in Education Act, it’s hard to overstate the law’s impact. Originally titled the Education for All Handicapped Children Act, but better known as Public Law 94-142, it said no child could be declared ineducable.[…]

• From MedicalXPress (Press release from the Mayo Clinic): “Smartwatch system helps parents shorten and defuse children's severe tantrums early”

Mayo Clinic researchers have developed a smartwatch-based alert system that signals parents at the earliest signs of a tantrum in children with emotional and behavioral disorders—prompting them to intervene before it intensifies.

In a new study published in JAMA Network Open, these alerts helped parents intervene within four seconds and shortened severe tantrums by an average of 11 minutes—about half the duration seen with standard therapy.

In this system, a smartwatch worn by the child detects physiological stress signals, such as rising heart rate, or changes in movement or sleep, and sends them to an artificial intelligence (AI)-enabled app on the parent's smartphone. The app analyzes the data in real time and sends an alert as a cue for the parent to connect with their child.

[…]Julia Shekunov, M.D., medical director of Mayo Clinic’s Child and Adolescent Psychiatry Inpatient Unit and also a study co-author, says the work addresses an urgent need. “We’re seeing more children in crisis, and the severity is increasing. This system gives parents tools they can use immediately, even outside the clinic, to help their child regain control.”

Future studies will refine the system’s predictive accuracy, test it in larger groups and assess its long-term benefits in routine outpatient care.

• From The New York Times: “Born Deaf and Blind, She’s Caught in Trump’s Anti-Diversity Crusade”

[…]At the hospital three years ago, meeting the newborn who would become their daughter, Mr. Garner was the first to notice the tiny flaps of skin where her ears should be. Annie, the child they were adopting, was deaf.

Over the next few months, as they got to know their daughter, the Garners would discover more challenges, including poor vision, a developmental disability and weak muscles.

They were first-time parents, and they felt overwhelmed, thrown into an unfamiliar world they hadn’t expected. “I was out there looking for anything and everything that could help us,” said Mr. Garner, now 34.

[…]He discovered the Wisconsin Deafblind Project, a state program for the families of children with combined vision and hearing loss. It made a tremendous difference as they learned to parent Annie, the Garners said.

[…]Then in September, the Trump administration canceled the five-year, $918,000 grant for the program, which supports about 170 children in Wisconsin like Annie. It also ended a $10.5 million grant used to recruit and retain special education teachers in the state.

[…]The Garners said they were shocked that the government would cut off assistance for raising a deafblind daughter. “It seems like it should be a group of kids that everyone wants to help,” said Mr. Garner, a civil engineer. “Taking away help from deafblind kids? I don’t understand.”

The Wisconsin Deafblind Project was penalized for prioritizing “applicants from underrepresented and historically marginalized groups,” according to a letter from the Trump administration, as well as its efforts to contract with women and minority business owners or disabled veterans.[…]

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.

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