The Boost Q&A: Kim Musheno, Senior Director of Medicaid Policy at The ARC United States

We’re coming up on a full year since H.R. 1 (President Trump’s “Big Beautiful Bill Act”) was signed into law on July 4, 2025. Included in the bill was nearly $1 trillion in cuts to Medicaid, a program jointly funded by states and the federal government. The act, which left state legislatures and their pending fiscal year budgets reeling, also conditioned Medicaid eligibility for adults in the Affordable Care Act Medicaid expansion group (and the two states in partial expansion waiver programs) on meeting work requirements starting Jan. 1, 2027.

Then, on June 1 of this year, the Centers for Medicaid and Medicare released an Interim Final Rule that will guide implementation of the work requirements. The rule adopts a far more restrictive, and still to be untangled, definition of “medical frailty” than states had been expecting.

To help parse the particulars, I spoke with Kim Musheno, senior director of Medicaid Policy at The Arc of the United States. With nearly 30 years of experience in disability policy, Musheno has played a key role in shaping many of the nation’s most significant laws affecting people with disabilities, including the Americans with Disabilities Act (ADA), the Affordable Care Act, Medicaid, IDEA, the Autism CARES Act, and the Rehabilitation Act.

Our far-ranging conversation touched not only on the Medicaid cuts mandated in H.R. 1 and the ramifications of the new work requirements, but on the Trump administration’s hunt for alleged Medicaid fraud, and how it’s affecting home and community-based services in all 50 states. — Roberta Bernstein, Editor, The Boost

Thanks for taking the time to do this. The ramifications of the Medicaid cuts in H.R. 1. as well the new work requirements have families and caregivers of people with intellectual and developmental disabilities (IDD) scared and confused. Just how worried should people be?

I’m very concerned, and I don’t blame people for being worried. H.R. 1 contains almost $1 trillion in Medicaid cuts over 10 years. That’s an historic cut and it amounts to a huge cost shift to states. It limits states’ flexibility to raise their state Medicaid match; increases eligibility checks; increases co-pays; and imposes paperwork burdens on individuals, families and professionals.

States are going to have to make difficult decisions about how to make up for the loss of federal funds. Will states raise taxes, take away from other parts of the budget, limit eligibility, or cut services? Since home and community-based services [HCBS] are optional under Medicaid, we’re concerned that states will cut these critical services that help people with disabilities live at home and in their communities.

Who’s being hit the hardest? 

Medicaid expansion states, because of many of these barriers apply to them. [Note: Since January 1, 2014, states have had the option to extend Medicaid coverage to most non-elderly adults with income up to 133% of the Federal Poverty Level.] The law imposes work or community engagement requirements as a condition to keep Medicaid coverage. We know that when this was tried in the past, in Arkansas, for example, thousands of people lost coverage due to the paperwork burden.

We were going to the Hill every day talking about how bad cuts would be for people with IDD, and some members of Congress and their staff would say to us over and over again, “These cuts are not going to affect your people. Your people aren’t going to get hurt.” It’s not true.

People with IDD are in all parts of the Medicaid system, including the expansion population. The HCBS services that are so important to keeping people in the community — like bathing dressing, eating, therapies, and respite care — are optional under Medicaid. So, when states need to make cuts because they’re receiving less federal support, what are they going to cut? They’re going to look to the optional services that don’t feel “optional” to people with IDD.

It doesn’t help that Health and Humans Services Secretary Robert F. Kennedy Jr., said that family caregivers are being paid for routine daily tasks they used to do for free, and that HCBS is “rife with fraud.” It’s a cruel narrative. Is HCBS just considered low-hanging fruit?

I don’t think many policymakers understand what it’s like for family caregivers who are caring for people with disabilities. Caregiving can be wonderful but it can also be difficult work, especially for those caring for family members with serious and complex medical and/or behavioral support needs.

HCBS is often the difference between living in the community and being forced into an institution.

And if people can’t live at home or in their communities, then the conversation turns to institutional care.

Yes, we’re extremely concerned that these changes could push states backwards.

Last year New York celebrated the 50^th anniversary of the Willowbrook Consent Decree, which stated that New York was committed to providing opportunities for community living, and led to the closure of the school. I personally worried that there wasn’t much at the moment to celebrate.

It makes us feel like policymakers just don’t know what it’s like to live in our shoes. The Willowbrook anniversary was important because it reminded us how far we’ve come from a time when people with disabilities were routinely isolated and denied basic dignity.

But I also think it should be a moment of reflection, not just celebration. The promise of Willowbrook was not simply to close on institution; it was to build a system where people with disabilities can live in their communities with the services and supports they need. It’s about whether we’re meeting our legal and moral commitments to people with disabilities and their families.

Which brings us to a discussion of the federal attack on alleged Medicaid fraud. The Task Force to Eliminate Fraud, overseen by Vice President J.D. Vance, was established in May of this year and is coordinating so-called anti-fraud efforts in all 50 states. This includes pausing federal Medicaid funding for past expenditures, which it’s already done in Minnesota and California. Can you tell me what you see as the biggest impact so far of these actions, and where you see things going?

The narrative of fraud to make further cuts is overwhelming. This is not a question of whether fraud should be addressed. It should. The question is whether the response protects program integrity without disrupting access to care.

You do see some states taking a step back, like in Ohio where Republicans in the state legislature just backed away from banning family members from serving as paid caregivers. That must be in some part due to people making noise. How successful is grassroots advocacy in fighting back against these claims of fraud?

Yes, The Arc of Ohio was actively part of pushing back on that proposal. They organized families to come and testify about how important family caregiving is so that policymakers could get a real picture of what it’s like.

Organizing really helps. We also saw in the Idaho budget cut discussions that would have significantly cut home and community-based services, but disability advocates testified in droves. They did make some cuts to disability programs, but they didn’t eliminate HCBS services due to advocacy.

That’s great to hear.

Also, in Maryland there were major cuts in the budget for the developmental disability services and, well, there were still pretty major cuts, but they weren’t as bad as originally proposed due to advocacy.

There was also a lot of local [Maryland] news coverage about the cuts, and that must have helped as well.

Yes, the news coverage helps.

It’s a vicious circle, because where is that care going to come from? There aren’t enough paid caregivers or Direct Support Professionals (DSPs), and in part that’s because they work so hard and are so underpaid.

And it’s getting worse. State budgets could also cut rates to Direct Support Professionals.

They can’t go any lower.

A lot of Direct Support Professionals are in the Medicaid expansion population so their health coverage is also being threatened. Now the administration is asking all 50 states to conduct a  revalidation of providers. They started in Minnesota and not all providers are even participating. Some haven’t gotten a notice, some don’t know they need to be doing this.

I know it’s early days, but is there any way to quantify yet what’s happening at the state level with these cuts and allegations?

There are some projects just being put into place to try to do just that, like at the GW Milken Institute School of Public Health. But they’re just getting up and running, and it’s not easy to do because every state has options to create their own programs and provide certain services to different populations. But, they’re trying, and it will be good to have data on the impact of these cuts.

Moving on to the latest news, last week a final rule was issued on Medicaid and work requirements that adopts a much more restrictive definition of medical frailty than states were expecting. What’s your understanding of what the reporting requirements will be — given that the ruling is some 400 pages long! — and how they will or perhaps won’t impact the IDD population?

We’re very worried that this could lead to a loss of coverage for some adults with IDD, especially those in the Medicaid expansion adult group.

Can you expand on that?

We’re still reading and evaluating the new Interim Final Rule [IFR], which just came out on June 1. It could lead to a loss of coverage for some adults with IDD, especially those in the Medicaid expansion group or other 1115 demonstration populations who have not become eligible through SSI, Medicare, HCBS level of care or disability-based eligibility pathways.

While public data do not provide a precise count of people with IDD enrolled through the Affordable Care Act [ACA] expansion group, a KFF analysis of 2021 Medicaid claims data [MISSING]

The IFR defines medical frailty as including an individual who is blind or disabled; with a substance use disorder; with a disabling mental disorder; with a physical, intellectual or developmental disability that significantly impairs their ability to perform one or more activity of daily living [ADLs]; or with a serious or complex medical condition. Additionally, the condition or diagnosis must significantly also impair the individual’s ability to comply with the community engagement requirement.

Therefore, to qualify for the medical exemption or “medical frailty exemption,” people with IDD must demonstrate that their condition impairs at last one ADL and that their condition impairs their ability to meet the work requirement. The latter is an additional requirement on top of the entire medical frailty exemption, not in the original statute, and it creates additional barriers for people with IDD to qualify for this exemption.

The other thing we noticed was that Medicaid-funded supported employment doesn’t seem to count as work. A lot of supported employment is paid for by Medicaid. Education can count, volunteer work can count. Why wouldn’t supported employment count? Its work.

What are the chances that the administration will throw this all up in the air have it come back down a different way in six months?

There’s an opportunity to comment on the IFR until the end of July. I expect that there will be a lot of comments discussing that states are not ready to implement these work requirements, which are coming up; they kick in January 2027 and states aren’t ready, especially given that they were getting indications from CMS that the medical frailty definition would be broader.

The Arc will be commenting from a national level and I know that our state and local chapters are eager to comment.

I hope there’s someone at CMS to go through all that.

Yes, I hope CMS will listen to our concerns. And, of course, we asked CMS in our comments to allow for self-attestation [or an individual stating that they have a medical condition and shouldn’t have to prove that they do]. It allows it, but only in the first year.

Which raises the question of why people with an established disability determination can’t be placed in an automatic renewal process.

It should be automatic. That’s what we were hoping for.

The IFR tells states to use “ex parte,” or existing data sources, so that people who should be exempt are automatically exempted. We are hoping that states will set that up so that people with IDD or serious and/or complex needs will be exempt. We just worry that some people will fall through the cracks if states do not have good data systems set up or that they don’t do comprehensive and accessible outreach.

I spoke to someone in New York State who’s a mother of a child with IDD and who also helps families navigate Medicaid renewals. She says that this year they’ve seen a lot of people with lifelong disabilities lose coverage during the redetermination process because of administrative bearers and paperwork issues. Is this because of the current chaos or is there something else happening?

Well, we started to see that through the unwinding of Medicaid after the pandemic, [during which] there had been continuous eligibility. After COVID there was a what we call “the unwinding process.” They had redeterminations and many who should have remained eligible fell off the program.

As you said, it was the paperwork burdens and other barriers. Maybe people don’t have access to the internet or didn’t get the notice or didn’t fill out the paperwork correctly.

Is there anything we haven’t covered that you think is important for families and caregivers to know or should watch out for?

I’m just extremely concerned about the disability system’s infrastructure, that this chaos will lead to providers failing. If we don’t support our providers of services and the people that do the hard work, we’re going to fall backwards and go back to institutional care. Nobody wants that.

I like to end things on an upbeat note or solutions, but these changes have me feeling kind of beat down!

Well, I do think advocacy works. One, because of disability advocates and others pushing back, H.R. 1 didn’t go as far as Congress wanted. They didn’t change the structural nature of Medicaid to block grants, which would have been really, really terrible.

And looking at the state level, advocacy works there, too. Efforts to push back on some of the cuts in Maryland and Idaho and now in Ohio worked. I encourage individuals and their families to tell their stories to local, state and federal policymakers — and also to reporters.

I appreciate that perspective, as well as a shout-out to advocacy work. I also wonder, on a hopeful note, if and when a new hopefully more democratic (my word) administration is elected into office that this can all be upended quickly. Or does that kind of change or mopping up just take an onerous amount of time?

Disability is non-partisan and impacts every family regardless of what party they’re in. We have always built champions on both sides of the aisle. But we do tell people to get out and vote and make sure you’re educating candidates about the needs of people with disabilities.

As to how quickly changes could happen, well, Congress could reverse the cuts that they made to Medicaid and SNAP. There are two bills [that have been introduced]: the Protecting Health Care and Lowering Costs Act [S. 2556/HR 4849], which would reverse the health care cuts in HR1, and the Restoring Food Security for American Families and Farmers Act of 2025 [HR 6088/S. 3281], which would reverse the cuts to SNAP.

There are also bills that would boost resources for home and community-based services and increase wages for Direct Support Professionals. I would encourage folks to ask their members of Congress to support these bills.

It’s going to take time to rebuild, but it can be reversed, and The Arc is working to build support for home and community-based services. We believe everyone should get the supports they need to live, work and play in their communities.

Intellectual and Developmental Disabilities for Week Ending June 12, 2026

MEDICAID

CMS Requires More Restrictive Definition of Medical Frailty in New Medicaid Work Requirements Rule (KFF.org)

Tracking Implementation of the 2025 Reconciliation Law Medicaid Work Requirements (KFF.org)

Too sick to work, but can they prove it? New Medicaid rule worries patients (AP)

How sick is sick enough? New Medicaid work rule worries patient advocates, states. (Politico)

Looming Medicaid Cuts Supercharge California’s Latest Labor-Industry Fight (KFF Health News)

Medicaid paperwork problems continue to cost thousands of Missourians coverage (Missouri Independent)

Proposed Ban on paid family caregivers in Ohio removed from Medicaid reform bill (Cleveland.com)

FRAUD

In Calif., Disability rights advocates protest Newsom’s proposed cuts to in-home support services (Los Angeles Times)

As Ohio targets Medicaid fraud, elderly Ohioans and those with disabilities fear losing their independence (Cleveland.com)

Ban on Medicaid payments to family caregivers would be devastating, say disabled Ohioan (Statehouse News Bureau)

Ohio families challenge proposed Shield Act over Medicaid caregiver payments (WLWT.com)

AUTISM

Genetic Risk of Autism, ADHD Decreased as Diagnoses Increased (MedPage Today)

MAHA’s Treatments for Autism: Camel’s Milk, Stem Cell Injections — And Spelling Therapy (KFF Health News)

If Autism Research Requires Brain Tissue, Why Aren’t People Donating? (Autism Spectrum News)

CAREGIVING

The Price of Caring: When Unpaid Caregiving Becomes a Human Rights Issue (Human Rights Research Center)

SPECIAL EDUCATION

California, Rhode Island and Wisconsin sue Trump administration over cuts to special education grants (Courthouse News)

STATES

Note: This starts with New York, where a majority of The Boost’s readership currently is based, and continues alphabetically by state.

NYS Lawmakers Approve ‘Traveling With Dignity Act’ (NY Disability Advocates)

Staten Island pool for kids with disabilities shuttered since COVID, no timeline for reopening (silive.com)

Budget plan axes funds for oversight at group homes for Arizonans with developmental disabilities (KJZZ.org)

OPINION: Arizona ESA moms demand voucher reforms to protect education for students with disabilities (AZ Capitol Times)

In Calif., ‘People are absolutely terrified’ | Disability rights advocates make final plea to Governor, lawmakers to avoid proposed cuts, changes to care (ABC10.com)

Colorado to regulate autism therapy providers for first time (The Denver Post/paywall)

‘Years of underfunding is not premature,’ Kansas lawmakers react to lawsuit threat, plan new finance formula (KHSB.com)

In Michigan, a development helps with housing ‘crisis’ for people with disabilities A developer is breaking ground on what it says is the first housing community for people with intellectual and developmental disabilities to offer homeownership. (Crains Detroit/paywall)

Michigan seeks to improve graduation rates for students with disabilities (Cleveland19.com)

Another Houston-area school district is consolidating special education programs for the upcoming school year (Houston Public Media)

TRAVEL

Testing Two New Seat Designs That Will Let You Fly in Your Wheelchair (New Mobility)

LEGISLATION

New ABLE Legislation Senators Jerry Moran (R-KS) and Chris Van Hollen (D-MD), joined by Senators Thom Tillis (R-NC) and Amy Klobuchar (D-MN), have introduced a bipartisan package of legislation to strengthen and expand ABLE accounts for people with disabilities. (Capitol Connection/Autism Society)

STUDIES AND REPORTS

Circles of Care: Home and Community-Based Services Supports for People of Color with Disabilities Leaving Institutional Settings (Brandeis Heller School for Social Policy and Management)

YOUTUBER STOKES CONTROVERSY

YouTubers Post About Abortion After a Down Syndrome Test “The online reaction has thrust into the spotlight one of the most emotionally fraught and rarely discussed decisions that parents have to make.” (The New York Times)

Homepage for June 5, 2026

CMS Requires More Restrictive Definition of Medical Frailty in New Medicaid Work Requirements Rule (KFF)

Medicaid Changes Will Push People With Disabilities Off Program, Advocates Warn (Disability Scoop/paywall)

New Medicaid Expansion Changes Hurt People with Disabilities (Statement from ASAN)

States balk at the high price of Medicaid work requirements amid budget crunch (Politico)

The Autism-Therapy Business Is Booming—and So Is the Billing Abuse (The Wall Street Journal/paywall)

OPINION: Your Child’s ABA Therapy Is Being Rationed. Every Autism Family Needs to Know What’s Happening Right Now. (Autism Innovation)

Minnesota cuts off thousands of Medicaid providers in race to keep federal funds (The Minnesota Star Tribune)

Ohio suspends payments to 49 Medicaid providers following fraud allegations (Dayton Daily News)

Trump cuts off funds to Hawaii Medicaid fraud unit over lack of cases (Reuters)

RFK Jr. Seeks To Peek at Americans’ Medical Records for Clues on Autism and Vaccines (KFF Health News)

Urine Test Can Detect Autism, Study Says  (Health Day)

Despite scrutiny, special ed money flows to for-profit residential treatment centers (AP)

Screens are leaving schools fast, though some students with disabilities rely on them (NPR)

Maryland Enacts Law to Require Plain Language Summaries for Ballot Measures (The Accessible Voting Booth, via Voting Rights Lab)

Mass. state legislature approves bill removing outdated disability terms from state laws (WWLP.com)

NJ Gov. taps intellectual and developmental disabilities ombudsman (NJ Globe)

New Report by disAbility Law Center of Virginia Finds Ongoing Accessibility Barriers at Virginia Polling Sites (DLCV)

Is Wisconsin violating the rights of disabled voters? Court hears arguments (WPR.org)

Samuel and Dan Habib win Emmy for Best Social Issue Documentary (Concord Monitor)

Intellectual and Developmental Disability News for Week Ending June 5, 2026

SPOTLIGHT: MEDICAID

The Centers for Medicaid and Medicare Services just made receiving Medicaid a hell of a lot harder. Both KFF and Disability Scoop unpack the implications. (And stay tuned for next week’s newsletter, where I’ll post The Boost’s Q&A with The Arc’s Kim Musheno, senior director of Medicaid Policy.)

CMS Requires More Restrictive Definition of Medical Frailty in New Medicaid Work Requirements Rule (KFF)

The rule adopts a restrictive definition of medical frailty that differs from states’ early expectations. “At nearly 400 pages, [it] will require time to fully assess its implications. Given the complexity of the provisions in the rule, states will likely face significant challenges in operationalizing the requirements in the next six months.”

Medicaid Changes Will Push People With Disabilities Off Program, Advocates Warn (Disability Scoop/paywall)

The rule “indicates that individuals with physical, intellectual or developmental disabilities will be considered ‘medically frail’ only if their condition ‘significantly impairs’ their ability to perform at least one activity of daily living, or ADL, which includes bathing, dressing, walking, toileting, eating or getting in and out of bed or a chair.” Other categories include “a serious or complex medical condition.”

Disability advocates warn “that the parameters put forth by CMS for people with disabilities to claim an exemption are far more limited than the definition of disability under the Americans with Disabilities Act.”

New Medicaid Expansion Changes Hurt People with Disabilities (Statement from Autistic Self Advocacy Network)

States balk at the high price of Medicaid work requirements amid budget crunch They’re costing already-strapped states millions or tens of millions to implement. (Politico)

MEDICAID ‘FRAUD’

The Autism-Therapy Business Is Booming—and So Is the Billing Abuse The latest look at Applied Behavior Analysis. (The Wall Street Journal/paywall)

Indiana pauses autism therapy provider signups “Indiana has seen an incredible surge in ABA spending over the past several years — a trend that raises concerns about sustainability and program integrity.”  (Indiana Capital Chronicle)

OPINION: Your Child’s ABA Therapy Is Being Rationed. Every Autism Family Needs to Know What’s Happening Right Now. ABA “is not without controversy … and those conversations are worth having. But for thousands of families [it has] helped their child learn to communicate, manage sensory overwhelm, and move through a world that was not built for them.” (Autism Innovation)

Minnesota cuts off thousands of Medicaid providers in race to keep federal funds The state cut ties — at least temporarily — with nearly two-thirds of the Medicaid service providers the state was reviewing to protect programs against fraud and keep federal funds flowing. The decision set off an uproar among providers. (The Minnesota Star Tribune)

Ohio suspends payments to 49 Medicaid providers following fraud allegations (Dayton Daily News)

Medicaid termination letters leave South Florida behavioral health patients and therapists in limbo (CBS News)

Trump cuts off funds to Hawaii Medicaid fraud unit over lack of cases Without a federally certified Medicaid fraud ​unit, the state’s broader Medicaid funding could be in jeopardy. (Reuters)

AUTISM

RFK Jr. Seeks To Peek at Americans’ Medical Records for Clues on Autism and Vaccines HSS wants data from little-known state systems that allow hospitals and clinics to exchange detailed, identifiable patient information to research a debunked link between vaccines and autism. (KFF Health News)

Urine Test Can Detect Autism, Study Says  (Health Day)

EDUCATION

Despite scrutiny, special ed money flows to for-profit residential treatment centers Nationwide, “many for-profit residential facilities in the so-called troubled teen industry that claim to treat severe mental and behavioral health issues in children and teens are deftly tapping into taxpayer money meant for students with disabilities.” (AP)

Screens are leaving schools fast, though some students with disabilities rely on them (NPR)

Screen time limits call for nuance, disability advocates say Blanket policies run the risk exacerbating existing challenges and running afoul of federal law. (K-12 Dive)

OPINION: The promise of an appropriate education for every child with a disability is under strain (The Hill)

STATES

Note: This starts with New York, where a majority of The Boost’s readership currently is based, and continues alphabetically by state.

Left Behind: How school buses disadvantage New York City students with disabilities (Chalkbeat)

Colorado Gov. signs bill containing protections for kids with disabilities even as funding remains up in the air The law will add new staff to the state department of education who will investigate complaints of discrimination in schools — if Colorado finds the money. (Colorado Sun)

Maryland Enacts Law to Require Plain Language Summaries for Ballot Measures (The Accessible Voting Booth, via Voting Rights Lab)

Mass. state legislature approves bill removing outdated disability terms from state laws (WWLP.com)

NJ Gov. taps intellectual and developmental disabilities ombudsman Lisa Montalbano, a former CEO of a non-profit helping people with I/DD, will  lead the office. (NJ Globe)

Most Oregon preschoolers with disabilities now learn alongside non-disabled peers (Oregon Live)

New Report by disAbility Law Center of Virginia Finds Ongoing Accessibility Barriers at Virginia Polling Sites (DLCV)

Is Wisconsin violating the rights of disabled voters? Court hears arguments Those groups argued that voters with disabilities should be allowed to receive, fill out and return an absentee ballot electronically (WPR.org)

ACROSS THE POND

How pupils with special educational needs are more likely to see their schools close (BBC)

OBIT

Frank Hayden, Who Led Global Growth of the Special Olympics, Dies at 96 (The New York Times)

EMMY WINNERS!

Samuel and Dan Habib win Emmy for Best Social Issue Documentary The award went to “The Ride Ahead: Love, Tattoos, and Other Disabled Things.” It follows Samuel as he deals with romance, transitions to independent living, pursues an associate degree and advocates for disability rights, features conversations with his mentors with disabilities. It’s their second Emmy. (Concord Monitor)

Home page week ending May 29 2026

Short Naps, Long Hours: How Autism Clinics Squeeze Medicaid Dollars Out of Preschoolers (The New York Times)

Parental mental health — not medication — drives autism correlation, new study finds (Los Angeles Times/paywall)

What’s in the 2026 NYS Budget? Here’s What To Know (NY Focus)

New York Medicaid beneficiaries confront barriers in accessing home care, study finds (McKnights Home Care)

California’s $2.4 billion special ed boost addresses critical needs, but challenges remain (EdSource)

Colorado bill aims to protect students with disabilities, but awaits governor’s signature  (9news.com)

Nearly 8,000 Await Medicaid Waiver as Georgia Cuts Budget for 400 Spots, Council Says (Press release)

Louisiana invests $5.1 million to help students with disabilities (KTAL News)

Maryland budget cuts, looming deadlines put family caregivers in a ‘complete tailspin’ (News from the States)

New law will enhance emergency response for people with disabilities (Virginia Mercury)

Ed Dept wants to end some IDEA data collections; special ed and disability groups pushed back (K-12 Dive)

Autistic students who make it through college face a bigger challenge: getting jobs (The Hechinger Report)

Federal judge refuses to block Trump executive order on mail voting — for now (Votebeat)

Adults with developmental disabilities or cerebral palsy face earlier fall injury risks (News-Medical.net)

Ranking the U.S. Airlines Most Likely to Damage Your Wheelchair (2026) (Wheelchair Travel)

Intellectual and Developmental Disability News for Week Ending May 29, 2026

AUTISM

Short Naps, Long Hours: How Autism Clinics Squeeze Medicaid Dollars Out of Preschoolers  A NYT investigation found that the rapid expansion if A.B.A.-focused clinics has played out with little regulatory oversight and brought allegations of children being harmed by profit-motivated practices. (The New York Times)

Parental mental health — not medication — drives autism correlation, new study finds An analysis of 37 studies totaling more than half-a-million pregnancies with antidepressant use found no significant link between common antidepressant use during pregnancy and autism/ADHD in children after adjusting for the mother’s mental health and other factors. If you can’t read the Times story due to the paywall, here’s a press release. (Los Angeles Times/paywall)

STATES

Note: This starts with New York, where a majority of The Boost’s readership currently is based, and continues alphabetically by state.

What’s in the 2026 NYS Budget? Here’s What To Know Human services providers (e.g., DSPs), contracted by the state will see a 2.7% increase in payments. The budget does not specify how much of that will go toward worker salaries. (NY Focus)

New York Medicaid beneficiaries confront barriers in accessing home care, study finds (McKnights Home Care)

California’s $2.4 billion special ed boost addresses critical needs, but challenges remain As TK-12 enrollment has declined by 8% over the past decade, the number of special ed students has grown by nearly 20%. (EdSource)

San Francisco County Office of Ed to Open New Special Ed Program for Students With Extensive Needs It’s for students with autism and intellectual disabilities, and the aim is to reduce costly non-public school placements and long transportation times for families. (KQED.org)

Colorado bill aims to protect students with disabilities, but awaits governor’s signature A bill sitting on Gov. Jared Polis’s desk could soon change the way Colorado schools serve students with disabilities by requiring them to adapt activities so every child can participate. (9news.com)

Nearly 8,000 Await Medicaid Waiver as Georgia Cuts Budget for 400 Spots, Council Says (Press release from the Georgia Council on Developmental Disabilities via The Georgia Virtue)

Louisiana invests $5.1 million to help students with disabilities FYI, a 2024 review by the U.S. Dept. of Education’s Office of Special Ed Programs found that the state did not meet federal standards in certain areas, especially regarding complaints and dispute resolution. (KTAL News)

Maryland budget cuts, looming deadlines put family caregivers in a ‘complete tailspin’ (News from the States)

PA homecare workers urge lawmakers for improved Medicaid reimbursement rate Under the current rate, homecare workers are paid 25-75% less than their peers in neighboring states. (Fox43.com)

New law will enhance emergency response for people with disabilities Regulations will require that certain healthcare providers conduct regular simulations to prepare employees to identify and respond to emergencies experienced by people with disabilities under their care. (Virginia Mercury)

EDUCATION

Ed Dept wants to end some IDEA data collections; special ed and disability groups pushed back The proposal would remove certain data collections for racial disparities in special ed. (K-12 Dive)

HIGHER EDUCATION

Autistic students who make it through college face a bigger challenge: getting jobs Some colleges are offering career-readiness classes and one-on-one career coaching; some are also working with employers to make their hiring and employment practices more inclusive. (The Hechinger Report)

VOTING RIGHTS

Federal judge refuses to block Trump executive order on mail voting — for now Trump’s executive order would give the U.S. Postal Service unprecedented control over mail ballots, but a judge said the agency hasn’t yet acted (Votebeat)

HEALTH CARE

Adults with developmental disabilities or cerebral palsy face earlier fall injury risks Researchers analyzed more than 35.8 million emergency department visits across 21 states. (news-medical.net)

PARENTHOOD

Do “special needs momfluencers” have their kids’ consent? This broadly discusses a certain type of mommy blogger — those who center themselves in the discussion — and raises interesting questions. (Rewire News Group)

TRAVEL

Ranking the U.S. Airlines Most Likely to Damage Your Wheelchair (2026) (Wheelchair Travel)

BAD NEWS

Parents push back after Chapel Hill yearbook omits 12 students with disabilities “Honestly, it feels like [I’m] an extinct animal … because my presence is there, I made a difference, but there’s no historical record of me.” (News Observer)

GOOD IDEAS

How Chefs on the Spectrum Empowers Adults With Autism (Today.com)

US supreme court dismisses Alabama’s bid to execute intellectually disabled man (The Guardian)

NYC promises new scorecards and more efficient routes for dysfunctional school bus system (Chalkbeat)

Arizonans with disabilities depend on at-home services. Medicaid cuts could erode the program (KJZZ.com)

‘Makeshift Fight Club’: Arkansas Private School Founder Punished for Abuse of Disabled Student (Disabled Journalists Assn.)

New bill requires autism awareness training for Florida law enforcement (WESH.com)

The Philadelphia school district will phase out a special ed program (Chalkbeat)

Families caring for disabled relatives face unthinkable choices as Medicaid cuts loom (NBC News)

Trump administration proposes crackdown on Medicaid state-directed payments (Healthcare Dive)

RFK Jr. announces ‘the largest autism fraud bust in American history’  (Politico)

Vance takes his fight against fraud to red state Ohio (AP)

Calif. Condemns Federal Deferral of IHSS Funds (Calif. Dept. of Health Care Services)

More states are offering caregiver tax credits for families — but they only offset a fraction of expenses (Marketwatch)

Risks and Priorities in Federal Disability Measurement (Urban Institute)

2024-25 Data at a Glance: I/DD Family Surveys (NCI IDD)

Mom’s Facebook plea may help son with disabilities walk at graduation (USA Today)

Fashion Celebrates Girls With Disabilities (Today.com)

Intellectual and Developmental Disability News for Week Ending May 22, 2026

SPOTLIGHT: SUPREME COURT

The Supreme Court threw out a challenge by the state of Alabama to a judicial finding that a death row inmate convicted of a 1997 murder is intellectually disabled and thus ineligible for the death penalty.

The Guardian explains that “because of a major 2002 supreme court precedent that executing an intellectually disabled person violates the constitution’s eighth amendment ban on ‘cruel and unusual punishment’, Alabama could not execute Smith. But that landmark ruling left it to the states to set standards for eligibility.”

It also reports that Justice Sotomayor, in her concurring opinion, said that “’the court is not equipped to provide any meaningful guidance on how courts should assess multiple IQ scores. That is because the differences between methods used to assess multiple IQ scores raise complicated questions on which even experts may disagree.”

Or, as Disability Scoop‘s headline put it, the court Punts On Deciding How Intellectual Disability Is Defined (paywall).

STATES

NYC promises new scorecards and more efficient routes for dysfunctional school bus system Of the 145,000 students reliant on yellow bus service, roughly 43% are children with disabilities. (Chalkbeat)

Arizonans with disabilities depend on at-home services. Medicaid cuts could erode the program Another look at what can happen to people with disabilities when essential services are cut.  (KJZZ.com)

‘Makeshift Fight Club’: Arkansas Private School Founder Punished for Abuse of Disabled Student (Disabled Journalists Association)

New bill requires autism awareness training for Florida law enforcement A mom got the whole ball rolling. (WESH.com)

Michigan’s use of AI to process SNAP applications draws concerns about past automation failures (Michigan Advance)

Minn. counties welcome state funds to overhaul old technology to administer SNAP, Medicaid (MPR News)

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

The Philadelphia school district will phase out a special ed program Intensive Learning Support is meant to boost students significantly academically behind their peers. The move is “an effort to educate more special education students alongside their peers.” (Chalkbeat)

MEDICAID

Families caring for disabled relatives face unthinkable choices as Medicaid cuts loom (NBC News)

Trump administration proposes crackdown on Medicaid state-directed payments (Healthcare Dive)

AHA STATMENT: CMS issues proposed rule on Medicaid supplemental payments Medicaid “is a lifeline for tens of millions of Americans — children, seniors, people with disabilities and hardworking individuals. [The] proposed rule raises important questions about how the statutory requirements will be implemented and the potential impact on providers’ ability to rely on critical Medicaid payments.” (American Hospital Assn.)

MEDICAID ‘FRAUD’

RFK Jr. announces ‘the largest autism fraud bust in American history’  The Dept. of Justice has arrested and indicted 15 people in Minnesota for alleged fraud schemes involving $90 million in Medicaid funds. James Clark, inspector general at Minnesota’s Department of Human Services, said his department stopped payments to some of the businesses connected to the charges more than a year ago and has already opened investigations and withheld payment to 11 of the 15 people charged. (Politico)

Vance takes his fight against fraud to red state Ohio (AP)

Ohio Gov. DeWine pushes back as GOP leaders blame administration for Medicaid fraud (Columbus Dispatch)

Calif. Condemns Federal Deferral of IHSS Funds CMS deferred $1.1 billion in federal funding tied to the state’s In-Home Supportive Services program, which serves some 905,000 seniors, children and people with disabilities with basic needs, citing fraud concerns. (Calif. Dept. of Health Care Services)

California Legislators Reject Cuts to In-Home Supportive Services in Proposed State Budget Some 31 Assemblymembers and Senators signed a letter rejecting proposed cuts to IHSS. (Sierra Sun Times)

CAREGIVERS

More states are offering caregiver tax credits for families — but they only offset a fraction of expenses Connecticut is poised to become the third state (after Oklahoma and Nebraska) offering the tax credit. (Marketwatch)

OPINION: The caregivers you’ve never heard of are in crisis (The Hill)

AUTISM

Leucovorin Scripts Surged Even Before White House Autism Push Well, not too much before. It apparently followed a February 2025 CBS News segment featuring a family who reported dramatic language improvements in a child after treatment. (MedPage Today)

HEALTH CARE

REPORTS & STUDIES

Risks and Priorities in Federal Disability Measurement Recent shifts in the approach to collecting and using data have raised concerns about how we measure and understand disabled people, their experiences and their protections. (Urban Institute)

2024-25 Data at a Glance: I/DD Family Surveys The data demonstrate how state Developmental Disability systems are impacting families. (NCI IDD)

ABLEISM

Mom’s Facebook plea may help son with disabilities walk at graduation A Texas mother’s now-viral Facebook post said school officials told her that her son would “take too long” to walk across the stage.(USA Today)

GOOD IDEAS

Fashion Celebrates Girls With Disabilities Fashion brand Alivia partners with a N.C. camp where participants work on every stage of the process, from initial design to marketing to walking in a fashion show. (Today.com)

Homepage for week ending may 15, 2026

JD Vance threatens health funding to states that don’t comply with White House anti-fraud effort

WATCH: Vance and Oz announce numerous moves on Medicaid and Medicare fraud, focusing on Democratic-run states

Trump Administration Will Withhold $1.3 Billion in Medicaid Payments to California (The New York Times)

Ohio introduces new Medicaid fraud prevention initiatives (Spectrum News 1)

OPINION: Republicans Push “Waste and Fraud” Narrative Again to Gut the Social Safety Net (Truthout.org)

Ed Department to release $144M for special education, early intervention (K-12 Dive)

Wealthy Students More Likely to Get Disability Accommodations, Study Finds (The 74)

Why emotional disturbance, a special ed category, is a double-edged sword for students (NPR)

Antidepressants in Pregnancy: What a New Study Found (MedPage Today)

Azithromycin use in late pregnancy may pose less risk of neurologic issues in babies than other antibiotics (Univ. of Minnesota/CIDRAP)

This high Schooler Developed an A.I. Tool to Diagnose Autism and ADHD Using the Retina (Smithsonian)

AMA announces educational video series on caring for people with disabilities (HME News)

Native kids with disabilities held in wooden boxes in upstate NY school district. Reforms are coming (NPR)

The Grand Tradition of Suing for School Tuition (New York Magazine)

Nebraska demands proof, but shared living provider says 400 pages weren’t enough to keep patient’s funding tier (1011now.com)

In Texas, Houston Independent School District is under federal investigation over plans to restructure special ed services (Houston Public Radio)

Deal to cut taxes, boost special ed funds, dies in Wisconsin Senate (WPR.org)

This app lets kids with disabilities use devices with their minds. Now anyone can download it (CBC Radio)

Autism and health (Autism Speaks)

Intellectual and Developmental Disability News for Week Ending May 15, 2026

SPOTLIGHT: MEDICAID ‘FRAUD’

The hunt for fraud is heating up. Below, some of this week’s major headlines, with summaries focusing on Medicaid.

JD Vance threatens health funding to states that don’t comply with White House anti-fraud effort

Attorneys general in all 50 states reportedly received a letter from the inspector general at the Dept. of Health and Human Services (HHS) warning states to investigate alleged Medicaid fraud or risk losing funding. This comes on the heels of HHS Secretary Robert F Kennedy Jr. accusuing some home health aides, including family members who take care of disabled people under Medicaid-funded Home- and Community-Based (HCBS) programs, of fraud.

Andy Schneider at Georgetown University’s Center for Children and Families told The Guardian that “there’s no statutory or regulatory basis for withholding all of a state’s federal Medicaid matching funds due to non-performance by a MFCU [Medicaid Fraud Control Units]. … Republican anti-fraud programs are [about] stripping away capacity in order to punish political rivals.” (The Guardian)

WATCH: Vance and Oz announce numerous moves on Medicaid and Medicare fraud, focusing on Democratic-run states

“In at least one case, the administration has erred in its accusations against states,” PBS reports. “In April, CMS acknowledged to The Associated Press that it made a significant error in figures it used to help justify a fraud probe in New York.” This raised a common criticism that the second Trump administration “tends to attack first and confirm the facts later.” (PBS.org)

Trump Administration Will Withhold $1.3 Billion in Medicaid Payments to California (The New York Times)

Ohio introduces new Medicaid fraud prevention initiatives (Spectrum News 1)

OPINION: Republicans Push “Waste and Fraud” Narrative Again to Gut the Social Safety Net (Truthout.org)

RELATED HCBS INFO

The National Disability Navigator Resource Collaborator recently posted Toward Holistic Health Services under Medicaid, which explained why, as an optional benefit under Medicaid, HCBS are at risk of deep cuts as federal Medicaid funding is reduced.

In hopeful news, it notes that in April federal legislative proposals — the HCBS Access Act and Long-Term Care Workforce Support Act — were reintroduced to ensure comprehensive HCBS coverage under Medicaid, along with the adequate workforce funding needed to sustain it. (NDNRC)

FEDERAL BUDGET

FY 27 Appropriations  The Autism Society has a good summary of what might be in the upcoming budget, noting that “together, these changes could weaken critical supports.” (Autism Society)

EDUCATION

Ed Department to release $144M for special education, early intervention The announcement also included guidance to states on using IDEA funds to help expectant parents of children with disabilities. (K-12 Dive)

Takeaways from McMahon hearing on Ed Dept priorities Lawmakers pressed the Ed secretary  about progress in addressing a backlog of civil rights complaints. A recent report found OCR had reached agreements in only 1% of pending cases in 2025. (K-12 Dive)

Wealthy Students More Likely to Get Disability Accommodations, Study Finds Study finds that wealthy families were twice as likely as poorer ones to be granted accommodations under the federal law Section 504 — but that IEP recipients much more likely to come from low-income families than well-off ones. (The 74)

Why emotional disturbance, a special ed category, is a double-edged sword for students (NPR)

AUTISM

Antidepressants in Pregnancy: What a New Study Found No clear link was found between prenatal antidepressant exposure and autism or ADHD in kids. (MedPage Today)

Azithromycin use in late pregnancy may pose less risk of neurologic issues in babies than other antibiotics (Univ. of Minnesota/CIDRAP)

Many genes have been linked to autism – but a new study suggests it may be their path to the brain that matters (Yale News)

This high Schooler Developed an A.I. Tool to Diagnose Autism and ADHD Using the Retina (Smithsonian)

New Findings on Conflicts of Interest in Autism Research A new study examined autism intervention research published in eight Applied Behavior Analysis journals. One data point: 78% of authors were paid ABA providers, paid ABA consultants, or both. (Psychology Today)

HEALTH CARE

AMA announces educational video series on caring for people with disabilities (HME News)

Feds to Reconsider Rule Barring Disability Discrimination in Healthcare HHS published an interim final rule putting off the deadline for healthcare providers to ensure that their websites and mobile apps meet certain accessibility standards. (Disability Scoop/paywall)

STATES

Note: This starts with New York, where a majority of The Boost’s readership currently is based, and continues alphabetically by state.

NYS Assembly passes bill requiring immediate parent notice of school abuse claims (CBS 6 Albany)

Native kids with disabilities held in wooden boxes in upstate NY school district. Reforms are coming (NPR)

The Grand Tradition of Suing for School Tuition This is an interesting article with no easy takeaway. It starts with the premise that the city spends over a billion a year on special-ed lawsuits brought, mostly, by white parents and notes that the rate of claims per student in New York State is 10 times higher than the national average. (New York Magazine)

Nebraska demands proof, but shared living provider says 400 pages weren’t enough to keep patient’s funding tier (1011now.com)

In Texas, Houston Independent School District is under federal investigation over plans to restructure special ed services (Houston Public Radio)

Deal to cut taxes, boost special ed funds, dies in Wisconsin Senate (WPR.org)

TECH

This app lets kids with disabilities use devices with their minds. Now anyone can download it (CBC Radio)

STUDIES & REPORTS

Rural residents less likely to receive HCBS than urban counterparts (McKnights)

Justice Denied: How Trump’s Office for Civil Rights Reached a 12- Year Low in Protecting Students from Discrimination (US Senate)

Autism and health (Autism Speaks)