October 9, 2026

VOR's Weekly News Update

VOR is a national non-profit organization

run by families of people with I/DD and autism

for families of people with I/DD and autism.

Families of Florida’s medically fragile children sound alarm as feds back out of lawsuit over care

Families struggle to find care in state with ‘systemic problems’

By Erica Briguglio, News 6 - Click Orlando, October 6, 2026

Two Florida women are facing charges for attempting to kill their special needs family members — cases that are drawing renewed attention to a long-standing crisis facing families who care for medically fragile children in the state.

According to the Osceola County Sheriff’s Office, Marilyn Therrell, 68, admitted to deputies that after her husband died last year, it became harder to care for her two autistic adult sons. Therrell is accused of trying to kill both sons before attempting to take her own life.

In a separate case, Deborah Collier, 70, of Volusia County, is facing charges for allegedly attempting to kill her disabled great-granddaughter — a 13-year-old in her custody — before trying to take her own life.

In an arrest affidavit, Collier told investigators she could not care for the child and feared placing her in an assisted living facility.

News 6 previously spoke with Collier’s attorney, who said family members were looking for help and care for the girl but struggling to find something they could afford or that was adequate for someone who needs 24-hour care.

A crisis years in the making

These cases are not isolated incidents. They reflect a much deeper, systemic problem — one that thousands of Florida families are living every day.

Both cases are shining a spotlight on a long-standing crisis for Florida families caring for medically fragile children — defined as children who require a skilled nurse around the clock.

There are between 7,000 and 10,000 medically complex children in Florida, according to Matt Dietz, a disability rights expert.

“Very few of them get 100% of the care that they need,” said Dietz.

One family’s story

Tricia Rafeedie and her family are moving out of Florida to get better care for 6-year-old Noah, whom they adopted through foster care when he was 1.

“He is cognitively still maybe two years old,” Rafeedie told News 6.

Noah has about 20 diagnoses, ranging from autism and fetal alcohol syndrome to severe brain damage. He also uses a feeding tube.

Rafeedie said she had to leave her job as a child protection investigator to stay home and care for Noah full time.

“We were told to apply for private duty nursing. That was denied. We were denied home health aide. We were denied paid parent caregiving,” she said.

A decade-long legal battle

The struggle families like Rafeedie’s face didn’t happen overnight — and neither did the legal fight to address it.

In 2013, the Department of Justice sued the state of Florida for violating the Americans with Disabilities Act, claiming the state was placing medically fragile children in nursing homes unnecessarily. The DOJ accused Florida of failing to provide adequate in-home nursing and community services to help families avoid placing children in these facilities.

“They were sued under Olmstead, which is a Supreme Court decision implementing part of the Americans with Disabilities Act saying that there’s a requirement in the law to have an integrated environment, so you don’t isolate people with disabilities,” said Dietz.

In 2023, a federal judge found the state violated Title II of the ADA, which prohibits disability discrimination by state and local governments and requires them to make programs, services and activities accessible to people with disabilities.

The court ordered Florida to make PDN reliable enough that children who need it can live at home. In practical terms, that means the state must ensure each child receiving PDN gets at least 90% of their authorized nursing hours, collect and report nurse-availability data and take concrete steps toward compliance.

Federal rollback raises new fears

Just when families thought the legal system was working in their favor, the ground shifted again.

In July 2026, the DOJ said Olmstead Guidance has no force of law and that it will not rely on the guidance in enforcing Title II of the ADA going forward.

Then, in August 2026, the DOJ filed a motion asking the 11th U.S. Circuit Court of Appeals to throw out the ruling in United States v. Florida and send the case to a lower court for reconsideration.

“The United States has advised the court that it no longer intends to uphold the integration mandate of the ADA, which requires people, children, adults, to receive services in the most integrated, community-based areas possible,” said Dietz.

Dietz has been part of the case for 13 years. He says the decision impacts more than 3,000 families in Florida. Some of those families are now writing to the court, asking it to keep the injunction in place, fearing they could lose even more services.

Read the full article here

Most Improper Medicaid Payments Due To Lack Of Documents, Not Fraud

By Legis1 Editorial Board, Edited by Carolyn Robinson, Joanne Levine, Legis 1, October 8, 2026

Why It Matters

The total amount of Medicaid fraud is unknown, according to a new Congressional Research Service report. However, the research distinguishes fraud from the broader category of improper payments.

​

The report notes that the Centers for Medicare & Medicaid Services (CMS) estimated 77% of improper Medicaid payments in fiscal 2025 resulted from insufficient documentation rather than fraud or abuse. That distinction shapes how Congress and the Trump administration frame oversight responses.

The Big Picture

CMS administers the Medicaid Integrity Program, which audits and monitors state Medicaid programs; the Department of Health and Human Services' Office of the Inspector General (HHS OIG) conducts audits and oversees state Medicaid Fraud Control Units (MFCUs); and the Department of Justice (DOJ) investigates and prosecutes fraud cases while coordinating federal, state, and local law enforcement.

State MFCUs reported recovering $2 billion from criminal and civil cases in fiscal 2025. CMS separately reported that program integrity activities for Medicaid and the Children's Health Insurance Program (CHIP) saved the federal government $1.5 billion in fiscal 2024.

CMS's "Crushing Fraud, Waste, & Abuse" initiative includes the Medicaid Fraud War Room, which CMS reported stopped more than $203 million in potentially improper payments during its first 88 days.

States are required to screen providers before enrollment, contract with recovery audit contractors to identify and recoup overpayments, and wherever they operate managed care, to conduct independent audits of managed care financial and encounter data.

The Government Accountability Office (GAO) placed "Strengthening Medicaid Program Integrity" on its High Risk List in February 2025. Program integrity covers administrative activities ensuring that state Medicaid programs, providers, and enrollees operate in accordance with federal and state law, encompassing fraud, waste, and abuse prevention as well as oversight of improper payments and overpayments.

The Bottom Line

The total amount of Medicaid fraud is unknown; however it's estimated that 77% of improper Medicaid payments in fiscal 2025 resulted from insufficient documentation rather than fraud or abuse.

Read the full article here

States’ Use of Program Integrity Tools in Medicaid Home Care

By Alice Burns, Abby Wolk, and Molly O'Malley Watts, KFF, October 5, 2026

The federal government continues to focus on addressing fraud, waste, and abuse in Medicaid, with much of the attention focused on home care services. KFF estimates that over 5 million people use Medicaid home care, which provides help with self-care activities such as bathing, dressing, and eating for older adults and people with disabilities. Home care has been an area of emphasis in new fraud initiatives because spending on home care is growing, and the services are provided in people’s homes and the community where fewer institutional processes and procedures exist. However, spending growth often reflects states’ efforts to increase the availability of home care, and there are additional safeguards against fraud in home care compared with other types of Medicaid services. While additional scrutiny and oversight may limit fraudulent or inappropriate Medicaid spending, additional efforts to combat fraud can create new administrative burdens and limit provider participation, potentially reducing access to care.

Aside from waiting lists (an imperfect measure of unmet need), there are generally no metrics to examine how many people who need Medicaid home care are not receiving benefits. States are engaged in many activities aimed at addressing fraud, waste, and abuse in their Medicaid home care programs; in KFF’s 2026 survey of states’ home care programs, the majority of responding states reported that program integrity was one of the top three priorities they were concerned with.

The data come from the 24^th annual KFF survey of officials administering Medicaid home care programs in all 50 states and the District of Columbia (hereafter referred to as a state). States completed the survey between April and August 2026. The survey was sent to each state official responsible for overseeing home care benefits (including home health, personal care, and waiver services for specific populations such as people with physical disabilities). All states except Florida and South Carolina responded to the 2026 survey, but response rates for certain questions were lower.

KFF’s survey finds that all responding states report using multiple program integrity practices beyond federal minimum requirements to prevent and detect fraud, with nearly all states employing a multifaceted approach. The federal government has requirements for states to identify and detect fraud in Medicaid home care; however, all responding states report using strategies that go beyond the federal requirements. KFF asked states whether they used any of eight strategies to “help identify and reduce fraud and abuse in the provision of waiver services,” and 42 states reported using all eight of the strategies that KFF asked about.

Continued

States Rushed to Enact Medicaid Red Tape, Results Trickling In

By Julie Carter, Medicare Rights Center, October 8, 2026

New resources from KFF show early results from two states that rushed to implement Medicaid work and reporting requirements before H.R. 1’s deadline went into effect. Starting January 1, 2027, all states with expansion Medicaid must put rules in place that bar coverage unless the individual can prove they are working or are not required to work due to health status, caregiving roles, or other exceptions.

Three states—Nebraska, Montana, and Arkansas—chose to enact the requirements early. Now data about the implementation is starting to show the effect of the change.

Nebraska

Nebraska chose to implement its work and reporting requirements starting May 1. Importantly, this new program went into effect before the administration released its rule explaining how the federal government interprets the new law. This means that Nebraska will likely have to change some of its newly created processes to meet later-finalized federal standards, some of which may be stricter or harder to administer than the state-chosen standards.

A KFF brief on Nebraska’s early data shows that most people subject to the new requirements (57%) qualified for an exclusion from the work requirements and kept their coverage. This includes many people who are medically frail or are parents or caregivers. Another large percentage (46%) were already working or meeting other qualifying activities like education programs. And a small number were given short-term hardship exemptions. Some individuals fell into multiple categories.

Of new applicants for coverage, 14% were denied. For those already enrolled, 7% lost coverage. KFF notes that most of the denials were not affirmative. Instead, most were due to missing documentation or information. There is often no clear way to show whether those who do not submit all of their paperwork would not qualify for coverage. Some may not meet the requirements while others may be eligible but struggle to prove their work hours. Still others may not have known about or understood the new requirements. The state may also have made errors in identifying exemptions.

Montana

Montana’s implementation began in July with an October 1 deadline for compliance.

There has been widespread confusion reported among people currently enrolled in expansion Medicaid coverage with minimal information about the rollout from the state. Montana has maintained that it is “prepared,” but noted in early September that most of the workers required to put the new systems in place had not yet been hired. The state has also noted that it will not be able to automatically verify public university attendance until next year.

Other data show that Montanans do not have many options for getting more information about the requirements, with high state call volumes and long wait times.

History Suggests Many Will Lose Coverage

Administrative barriers can make getting and keeping Medicaid coverage difficult, even without work and reporting requirements in place. Recently, the process of post-pandemic Medicaid “unwinding” led to many eligible people losing coverage for procedural reasons like incomplete paperwork or outdated contact information. These procedural disenrollments were especially felt by some underserved populations, putting them at risk for worse health outcomes and declining well-being.

Reversing Harmful Policies Is Key

Determining whether Medicaid denials are a result of people not being eligible for care or struggling with the administrative burden is a vital step to mitigating the harm of these new restrictions.

But reversing these harmful policies is even more important. Keeping people insured helps the health care system and the Medicare program. Lack of insurance can lead to people having worsening health through delaying or avoiding care and higher costs when they reach Medicare eligibility. And people with both Medicare and Medicaid can get caught up in administrative issues if states lack the staffing to keep other eligibility determinations running smoothly.

Read the full article here

Kentucky - Berea moms say Medicaid cuts from the One Big Beautiful Bill are already affecting their children's care

By Carlee Hogsten, Lex 18 News, October 7, 2026

Medicaid cuts included in the One Big Beautiful Bill went into effect last week and are already causing concern for some Kentucky families.

Two Berea mothers say losing coverage, even temporarily, puts critical care and services for their children at risk.

For 9-year-old Raelynn, surviving has never been easy. Born with VACTERL, a condition that affects her heart, kidney and respiratory system, she spent nine months in the hospital last year after the flu turned into necrotizing pneumonia. While on ECMO, she suffered a stroke that left her paralyzed.

"Last year, she struggled just to survive," Megan Gammell said.

But while her daughter was fighting for her life, Gammell said she was also fighting to keep Medicaid coverage.

"At that time when we were already struggling with her health, it made us feel like we were abandoned," Gammell said.

Gammell said Raelynn was dropped from Medicaid three times in the past year, including while she was on life support. She only recently got that coverage back.

"We had a period of three months where she was without it. And that was very, very stressful," Gammell said.

Gammell said Medicaid helps with therapy, among other things. And for Raelynn, it makes the world of difference; after nearly two years of paralysis, she started walking again last week.

Another Berea mom, Breanna Murphy, said her 4-year-old son Colson, who has autism, has also been denied Medicaid, even after an appeal.

"he is a kid with a lot of needs and stuff and we just we can't afford it and it's just disabling him further in life," Murphy said.

Murphy said Colson is nonverbal, has level-three autism and needs intensive therapy. She said ABA therapy alone costs about $2,400 a week, and they're now cutting back some of the care he receives.

"Ideally he should be twice a week. He's going once every two weeks now," Murphy said.

More Medicaid changes are coming for Kentuckians. State officials said new rules will go into effect next year requiring certain adults to show they're working, going to school, volunteering, or meeting other requirements to keep their coverage. Officials said some people will be exempt, including those with certain medical conditions.

Read the full article here

Which States Will Be Affected by Key Medicaid Provisions in the 2025 Reconciliation Law?

By Alice Burns, Jennifer Tolbert, Robin Rudowitz, and Anthony Montano, KFF. October 8, 2026

Amidst challenging fiscal conditions and upcoming national and state elections, states are working to implement major federal changes to Medicaid. The 2025 reconciliation law made major changes to federal revenues and spending. Shortly after enactment, the Congressional Budget Office (CBO) estimated the new law would reduce federal spending on Medicaid by $911 billion over the 2025–2034 period and that the Medicaid changes would increase the number of people without health insurance by 7.5 million in the year 2034. Recognizing the risks such changes posed for rural areas, policy makers added a $50 billion rural health transformation program (referred to here as the “rural health fund”) to the reconciliation law. All 50 states have received first-year allotments from the rural health fund and are implementing new initiatives to support rural health care, although these funds will not offset reductions in federal Medicaid support.

Even before the new restrictions take effect, the landscape is evolving, making it difficult to isolate the effects of the changes in the law. Medicaid enrollment is declining, and states are facing tight fiscal conditions due to slowing revenue growth and increased spending pressures. The forthcoming policy changes from the 2025 reconciliation law are expected to increase coverage loss, decrease provider reimbursement rates, and place new strain on state budgets. Some more recent estimates of the law’s provisions—such as those included in proposed or final regulations—are not comparable to the older CBO estimates because they cover different time periods, use different baseline projections of spending and health coverage, and have different assumptions about how states, providers, and people will respond to the changing Medicaid policies.

Although current estimates of the effect of the law on Medicaid are not available—and are unlikely to be available in the future, this policy watch illuminates how the impacts will vary across states by showing which key eligibility and financing provisions are expected to affect each state and Washington DC (hereafter referred to as a state). 

Continued

Washington officials consider steep cut to developmental disability services

Adjusting eligibility could cost $13 million less amid the state’s budget woes, but would cost 2,655 people their services.

By Jake Goldstein-Street, Washington State Standard, October 7, 2026

A Washington state agency has floated cutting services for more than 2,600 residents with developmental disabilities with the goal of saving money to close a looming budget gap.

As part of its requests for the state’s next two-year spending plan, the Department of Social and Health Services suggested restricting eligibility for services could save $13.3 million, about $6 million of which would come from the state’s general fund.

The proposal would raise the bar by requiring people with developmental disabilities to show they need support with more activities of daily living to be eligible for state-paid services than they do now. These include bathing, dressing, eating and taking medication.

This suggested change would end Medicaid eligibility for an estimated 2,655 residents, according to the Department of Social and Health Services. It would mean some people receiving care in residential facilities would lose their housing since it’s contingent upon qualifying, potentially pushing them into homelessness.

Continued

Disability service providers under pressure from staffing shortages, Medicaid cuts   

By John Roszkowski, McKnight's Home Care, October 7,2026

Eighty-five percent of providers of intellectual and developmental disabilities (I/DD) services experienced moderate to severe staffing shortage in the past year, and providers fear the situation could get worse with looming Medicaid cuts and increased government regulatory scrutiny of the industry, a new survey finds. 

ANCOR, a national nonprofit organization representing community-based providers that serve people with intellectual and developmental disabilities, released its “State of the America’s Direct Support Workforce Crisis” report for State of the America’s Direct Support Workforce Crisis” report for 2026 last week. The seventh annual report was based on responses from 524 disability service providers from across the country, most of whom provide Medicaid home- and community-based services, to an online survey conducted by the organization this summer.  

Tom Rice, the report’s lead author and director of policy and regulatory affairs for ANCOR, said the survey’s findings highlight that the workforce challenges that have faced providers in recent years have not improved. 

“I think one of the most striking things is how little has changed since last year’s report in 2025, which is definitely disappointing,” Rice told McKnight’s Home Care Daily Pulse in a telephone interview Monday. “We had 85% of the people who responded to the survey that said they had moderate or severe staffing challenges over the past 12 months. Fifty-five percent of respondents reported turning away new referrals simply because of inadequate staffing.”

Other key findings of the survey included: 

• 29% of respondents indicated they were discontinuing programs and services because of staffing challenges.
• 57% of respondents reported an intent to delay the launch of new programs due to staffing challenges.
• 48% percent of respondents indicated that they were considering further cuts to programs if recruitment and retention challenges failed to subside.
• 36% were experiencing more frequent reportable incidents due to staffing shortages.
• 56% percent of respondents said the threat of state-initiated reimbursement reductions or service cuts in response to last year’s federal budget reconciliation law (H.R. 1), also known as the One Big Beautiful Bill Act, impacted their decisions to not expand services this year.

Continued

Download the 2026 State of the Workforce Crisis Report here

A Look at Waiting Lists for Medicaid Home- and Community-Based Services from 2016 to 2026

By Alice Burns, Abby Wolk, and Molly O'Malley Watts, KFF, October 5, 2026

Medicaid is the primary payer for long-term care (LTC) in the U.S. and pays for more than two-thirds of the LTC delivered in home- and community-based settings. Most home care (also known as “home- and community-based services” or HCBS) is optional for states to provide and is frequently offered through “waivers,” which allow states to cover a wide range of benefits and to choose—and limit—the number of people who receive services. KFF estimates that more than 5 million Medicaid enrollees use home care, and that about half of people are using home care through waivers. States’ ability to cap the number of people enrolled in home care waivers can result in waiting lists when the number of people seeking services exceeds the number of waiver slots available.

Passed last year, the 2025 reconciliation law made substantial changes to Medicaid that are expected to significantly reduce federal funding for Medicaid and lead to coverage loss for many current enrollees, placing new financial pressures on states, providers, and enrollees. Given the substantial share of Medicaid spending that pays for home care, and the optional nature of most home care programs, cuts to home care programs could occur as states respond to reduced federal spending. If states cut home care by reducing the number of people who can receive waiver services, waiting lists could increase. Proposals to cut home care may face challenges because people who rely on such services have complex health care needs and because elections may make it more difficult to restrict coverage. Recent tracking of programmatic changes to Medicaid home care highlights that some states have cut their programs, but in many cases, proposed cuts were not enacted, and other states continue to make enhancements.

Waiting lists could also increase because of changes to immigration policy in states that use waiting lists to manage shortages of home care workers. Three in 10 direct care workers are immigrants, and recent federal policy changes could further exacerbate the challenge of retaining and growing the workforce.

This data note provides new information about waiting lists in Medicaid home care before many of the provisions in the reconciliation law go into effect. Waiting lists are an incomplete measure of unmet need and are not necessarily comparable across states or over time. The data come from the 24^th KFF survey of officials administering Medicaid home care programs in all 50 states and the District of Columbia (hereafter referred to as a state), which states completed between April and August 2026. The survey was sent to each state official responsible for overseeing home care benefits (including home health, personal care, and waiver services for specific populations such as people with physical disabilities). All states except Florida and South Carolina responded to the 2026 survey. To facilitate comparisons over time, Florida’s responses to the 2022 survey and South Carolina’s responses to the 2025 survey were included with their permission. Survey findings are reported by state and waiver target population, although states often offer multiple waivers for a given target population. Key takeaways include:

• Forty states maintain waiting lists or interest lists for people who would like to receive home care, a number that fluctuated little between 2016 and 2026.
• In all years since 2016, there have been at least 0.5 million people on waiting lists or interest lists, with a total of almost 650,000 in 2026.
• In 2026, two states reported having at least one new waiting list (across three waivers), and 32 states reported an increase in the number of people on waiting lists or interest lists compared with only 7 states reporting a decrease.
• Most people on waiting lists or interest lists have intellectual or developmental disabilities (I/DD), and most live in states that do not screen any people for eligibility prior to adding them to waiting lists.
• Most people on waiting lists or interest lists are eligible for personal care provided through states’ regular Medicaid programs or for services provided through specialized state plan home care benefits.

Continued

Missouri - Frail and elderly waiver waitlist grows, despite $24 million diverted from IDD waiver funds

By Patrick Richardson. The Sentinel, October 5, 2026

Despite diverting $24 million earmarked for individuals with developmental disabilities to the frail and elderly waiver program, KSN reports that the waiver waitlist has grown past 400. 

Department of Children and Families Secretary Laura Howard — who is also in charge of KDADS — said in a release in August that during the most recent legislative session, KDADS diverted the $24 million the IDD appropriation and [Physical Disability] waiver savings “to avoid creating waiting lists for other HCBS waivers, including the Frail Elderly (FE) and Brain Injury (BI) waivers.” 

Yet the frail and elderly waitlist has grown, and the IDD waiver waitlist has ballooned past the 4,000-person cap set by the legislature to more than 5,000.

Sara Hart Weir Rogers, the executive director of the Kansas Council on Developmental Disabilities, a federally funded independent state agency, said that while the FE waiver waitlist should be taken seriously, the enormity of the IDD waiver waitlist is not being addressed.

“Every waiver waitlist should be treated with urgency because behind every number is a Kansan who needs services and a family waiting for help,” she said in an email statement. “That is especially true for the IDD waiver, where 5,400 Kansans are waiting, and some families have faced waits approaching a decade. We absolutely need to address the growing Frail Elderly waitlist, but we cannot lose sight of the longstanding crisis facing Kansans with intellectual and developmental disabilities. 

“The Legislature has directed KDADS to reduce the IDD waitlist to no more than 4,000 people, and we are still waiting for the agency to meet that requirement. Kansas must make eliminating these waitlists a priority — not simply managing them.” 

IDD waitlist times stretch beyond a decade for some residents

One family has had their daughter on the IDD waitlist for nearly three decades.

Patti Garbeff’s daughter Pattie is now in her 40s — her mother is in her 80s — and while very independent, will need to have services to remain so in the years to come.

Garbeff said she signed Pattie — who has Down Syndrome — up for the waiver when she was 13 years old, but it would appear Pattie’s case manager at the time didn’t follow through.

Garbeff said that when she got a new case manager for her daughter, the ball finally started rolling. Moreover, there was still a struggle to get Pattie services because she, Garbeff said, is “healthy.”

“We have been on the wait list that long, and I think the policymakers could do a better job of helping people,” Garbeff said.

Continued

Families of Arkansans with disabilities testify to state lawmakers about waitlist for in-home aid

By Sarah True, Arkansas Democrat-Gazette, October 3, 2026

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

Since summer, families waiting to get on the CES waiver have pushed Gov. Sarah Huckabee Sanders to call a special legislative session to boost funding and reduce the waitlist. The Medicaid-funded program provides a range of home- and community-based services for children and adults with intellectual and developmental disabilities so they can remain in their homes and out of facilities.

In response to pressure, Sanders announced Sept. 15 that DHS would "begin work on providing supportive living services" to waitlisted families. The services would be available "to every eligible Arkansan, whether they're enrolled in the CES waiver or not," Sanders said, at an estimated cost of $17 million.

At Friday's hearing, held by the Legislature's Joint Committee on Public Health, Welfare and Labor, DHS officials gave details on how the waiver program operates.

Jennifer Brezée, director of DHS' Division of Developmental Disabilities Services, said people currently at the top of the waitlist have been waiting just over three years. About 150 people per year leave the program, she said, which creates room for that same number to be added from the waitlist.

Representative Ryan Rose, R-Van Buren, pointed out that it would take over 16 years for the last person on the waitlist to be admitted to the program at that rate. Brezée conceded that his estimate seemed correct.

Continued

Trump Accounts Could Put SSI At Risk

By Michelle Diament, Disability Scoop, October 9, 2026

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

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

This month, the U.S. Department of the Treasury said that it automatically signed up every child with a Social Security number for a Trump Account, though there are steps parents must take to claim the accounts in order to allow deposits. Accounts opened and claimed for children born between 2025 and 2028 will automatically be funded with $1,000 from the Treasury Department.

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

While funds in Trump Accounts will not impact eligibility for Supplemental Security Income for children, they could disqualify individuals with disabilities from accessing such benefits when they reach adulthood.

That’s because the funds will count against the $2,000 asset limit for SSI eligibility for individuals age 18 and older.

“If an SSI beneficiary exceeds the asset test, it’s a big problem because they completely lose eligibility for SSI. Their benefits are suspended, then terminated — often with big overpayments they must repay, creating a whole other set of problems,” said Kathleen Romig, a senior fellow at the Center on Budget and Policy Priorities.

Moreover, since many people with disabilities qualify for Medicaid because they receive SSI, having too much money in a Trump Account could lead to the loss of healthcare and home and community-based services too, Romig said.

Continued

After states sue, Trump administration walks away from disability rights enforcement

By Anna Claire Vollers, Stateline, via Kiowa County Press (Colorado), October 3, 2026

A court battle that began when conservative-led states sued to block protections for transgender people has ended in a rollback of protections for people with disabilities — a result disability advocates have feared for months.

When the lawsuit first drew attention in early 2025, disability advocates sounded alarms about the rollback the case could trigger for community-based care protections nationwide.

At the end of August, the U.S. Department of Health and Human Services joined the handful of conservative-led states suing it, and asked a court to strike language from a federal disability-rights regulation that directed states to prioritize serving disabled people in their communities rather than in nursing homes or institutions.

Last week the judge did so, ending the case, Texas v. Kennedy, by removing all mentions of community integration from the regulation that implements a piece of landmark federal disability law known as Section 504.

The Trump administration’s move — along with a June memo from the Justice Department that argued federal law doesn’t require states to provide community-based services for disabled people — marks a sharp about-face for the federal government, which has long been the chief enforcer of such protections.

The change to the Section 504 rule, disability rights advocates fear, will make it harder for disabled people to receive services they need to live in their communities — and to stay out of institutions.

“This affects children, this affects adults, it affects your elderly parents. It affects everyone,” said Charlotte Cravins, a Baton Rouge, Louisiana, attorney whose toddler son Landry was born with Down syndrome and has impaired vision.

Landry receives publicly funded therapies that have helped him learn to crawl, pull himself up to stand, and to use American Sign Language, all while being able to live at home with his family.

But Cravins worries the ruling threatens those gains. Her husband, who was Landry’s main caregiver, recently had to return to work, and so Cravins is now caring for their son while also working. They’re hoping to get Landry assessed for nursing services and other aids that can help with daily living.

“But those services are at risk now of being unavailable,” she said.

States get a boost

One practical result of the judgment in this case — and the Department of Justice’s June memo that reinterpreted federal disability law and the Olmstead decision — is that disabled people may have to go to greater lengths, including suing states, to get services if they’re denied them.

The department has already retreated from disability rights cases against states including Florida and Texas, which have long pushed back against Olmstead’s scope in the hopes of persuading the feds to narrow their interpretation of disability law.

In 2023, a U.S. district court found that Florida had kept children with complex medical needs unnecessarily institutionalized in nursing facilities, violating federal disability rights law and the Olmstead integration mandate. The Justice Department filed the lawsuit during the Biden administration. The department shifted its stance this year and asked the court to vacate its decision.

The Justice Department also dropped out of a long-running case centered on claims Texas has been illegally placing thousands of disabled people in nursing homes for decades.

Disability rights groups and advocates have called for protection of federal integration requirements. Late last month, a bipartisan group of congressional representatives cosponsored a resolution to reaffirm Olmstead and the right of disabled people to receive services in their communities.

Read the full article here

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S.4889 - Sen. Tim Kaine (D-VA) - The Supporting Our Direct Care Workforce and Family Caregivers Act - A bill to award grants for the creation, recruitment, training and education, retention, and advancement of the direct care workforce and to award grants to support family caregivers. 



H.R.6137 / S.3211 - Rep. Brian Fitzpatrick (R-NJ) and Sen. Maggie Hassan (D-NH) - Recognizing the Role of Direct Support Professionals - A bill to require the Office of Management and Budget to consider revising the Standard Occupational Classification system to establish a separate code for direct support professionals

H.R4849 / S.2556 - Rep. Adam Grey (D-CA) and Sen. Chuck Schumer (D-NY) Protecting Health Care and Lowering Costs Act of 2025 - To repeal health-related portions of An Act to provide for reconciliation pursuant to title II of H. Con. Res. 14 (Public Law 119-21, The One Big Beautiful Bill Act)

H.R.8736 - Rep. Glenn Grothman (R-WI) - Restoration of Employment Choice for Adults with Disabilities Act - To amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities. 

H.R.6766 / S.3492 - Rep. Claudia Tenney (R-NY) and Sen. Richard Blumenthal (D-CT) - Essential Caregivers Act - To amend titles XVIII and XIX of the Social Security Act to require skilled nursing facilities, nursing facilities, intermediate care facilities for the intellectually disabled, and inpatient rehabilitation facilities to permit essential caregivers access during any period in which regular visitation is restricted.

H.R.4796 - Rep. Laura Friedman (D-CA) - Restoring Essential Healthcare Act -To amend Public Law 119-21 (The One Big Beautiful Bill Act) to repeal the prohibition on making payments under the Medicaid program to certain entities.

H.R.4807 - Rep Greg Landsman (D-OH) - Protect Our Hospitals Act - To amend Public Law 119-21 to repeal certain changes to provider taxes under the Medicaid program. 

H.R.1262 & S.932 - Rep. Michael McCaul (R-TX) and Sen. Markwayne Mullin (R-OK) "Give Kids A Chance Act" - To amend the Federal Food, Drug, and Cosmetic Act with respect to molecularly targeted pediatric cancer investigations. This bill would renew research into pediatric cancers and includes increasing funding for rare diseases, some of which cause Intellual and developmental disabilities and autism.  

H.R.1509 & S.752 - Rep. Lori Trahan (D-MA) & Sen. Chuck Grassley (R-IA)

Accelerating Kids' Access to Care Act -

This bill would amend titles XIX and XXI of the Social Security Act to streamline the enrollment process for eligible out-of-state providers under Medicaid and CHIP, and streamline enrollment under the Medicaid program of certain providers across State lines.

H.R.2598 & S.1277 - Rep Jared Huffman (D-CA) and Sen Chris Van Hollen (D-MD) The IDEA Full Funding Act

To amend part B of the Individuals with Disabilities Education Act to provide full Federal funding of such part.

S.2279 - Sen. Josh Hawley (R-MO)

A bill to repeal the changes to Medicaid State provider tax authority and State directed payments made by the One Big Beautiful Bill Act and provide increased funding for the rural health transformation program.

H.R.1950 - Rep. Mark Pocan (D-WI) - Protect Social Security and Medicare Act

To protect benefits provided under Social Security, Medicare, and any other program of benefits administered by the Social Security Administration or the Centers for Medicare and Medicaid Services. 

S.779 & H.R.1735 - Sen. Alex Padilla (D-CA) & Rep. August Pfluger (R-TX)

To amend title XIX of the Public Health Service Act to provide for prevention and early intervention services under the Block Grants for Community Mental Health Services program

H.R.2491 & S.1227 - Rep Kat Cammack (R-FL) & Sen. Edward Markey (D-MA) - The ABC Act

To require the Administrator of the Centers for Medicare & Medicaid Services and the Commissioner of Social Security to review and simplify the processes, procedures, forms, and communications for family caregivers to assist individuals in establishing eligibility for, enrolling in, and maintaining and utilizing coverage and benefits under the Medicare, Medicaid, CHIP, and Social Security programs



VOR OPPOSES:

H.R.2743 & S.1332 - Rep. Bobby Scott (D-VA) & Sen. Bernie Sanders (I-VT) Raise the Wage Act - A bill to provide increases to the Federal minimum wage and for other purposes. VOR opposes the provision in this bill that would phase out section 14(c) and sheltered workshops for individuals with I/DD and autism.

S.2438 - Transformation to Competitive Employment Act (Sen. Chris Van Hollen (D-MD) - A bill to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support people with disabilities through competitive integrated employment, to phase out the use of such special certificates, and for other purposes. 

H.R.9401 / S.4865 - Rep. Steve Cohen (D-TN) & Sen. Michael Bennet (D-CO) The Latonya Reeves Freedom Act of 2026 - A bill to prohibit discrimination against individuals with disabilities who need long-term services and support. The bill is "softer" than in previous years, yet still biased against institutions (without specifying ICFs) and fails to acknowledge the importance of ICFs and SNFs in a full continuum of care. 

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