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Medical Motherhood’s news round up

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Then we moved to Ireland.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Medical Motherhood’s news round up

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

[…]And she’s not alone.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Medical Motherhood’s news round up

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How have your experiences with IEP meetings gone?

Medical Motherhood’s news round up

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Contest update

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

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

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Medical Motherhood’s news round up

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This has been proven in many countries, including the United States, Netherlands, New Zealand and Taiwan. For parents who wish to advocate more effectively for their children, remember: data is power, community is strength and love, and when paired with action, creates real change.

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

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

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

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

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

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

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

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

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

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

Read more

Hey readers,

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

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Medical Motherhood’s news round up

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Medical Motherhood’s news round up

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Download your card now.

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Medical Motherhood’s news round up

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• 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.

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Greetings from Seattle!

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

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

Story time.

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

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

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

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

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

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

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

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

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Medical Motherhood’s news round up

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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.

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

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

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

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

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

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

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

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

• We document caregiver hours.

• We submit medication records.

• We undergo eligibility assessments.

• We justify equipment (again and again).

• We coordinate with doctors, specialists and therapists.

• We track and report changes.

• We respond to audits and paperwork requests.

• We appeal decisions with even more extensive documentation.

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

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

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

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

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

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

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

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

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

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

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Medical Motherhood’s news round up

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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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Medical Motherhood’s news round up

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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.

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

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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Medical Motherhood’s news round up

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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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Medical Motherhood’s news round up

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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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