May 22, 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.

Time is running out

Join us on Capitol Hill in June!

VOR's 2026 Legislative Initiative

June 8 - 10

Washington D.C.

This is your chance to share with members of Congress about the issues that affect us, as families of individuals with I/DD and autism.

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The Caregivers You’ve Never Heard Of are in Crisis  

By Barbara Merrill, Kendra Davenport, and Diane Wilush, The Hill, May 19, 2026

Across the country, thousands of professional caregivers that make up the home and community-based care workforce help Americans with intellectual and developmental disabilities, older adults and people with disabilities receive support in their homes and communities rather than in more expensive institutions. 

These caregivers provide critical emotionally and physically demanding care to people, allowing them to live life with dignity and self-determination. They support our neighbors across the country with bathing, dressing and eating. They help them build friendships and stay connected with their families and engage in our communities. 

This community-based model is central to Medicaid’s home and community-based services, which serves as a lifeline for families and the fabric that helps keep communities strong and thriving. These caregivers are the reason why an estimated 94 percent of Americans with an intellectual and developmental disability can live in their homes and communities, rather than in institutions.

Their impact extends well beyond the people they directly support. These caregivers — often known as direct support professionals — make it possible for family caregivers to stay in the workforce, for employers to retain valued workers and for communities to remain stronger and more stable.

But right now, this workforce and the home and community-based care system that supports them is in crisis. Administration and congressional actions purportedly aimed at targeting waste, fraud and abuse in Medicaid — goals we fully support — have been so broadly construed that the integrity of all home and community-based care is being called into question. 

Continued

Proposed CMS Rule Could Strip Billions from Medicaid and Destabilize Health Care Infrastructure

By National Health Law Program, May 21, 2026

The Centers for Medicare & Medicaid Services (CMS) issued a proposed rule that would significantly reduce state flexibility to pay health care providers that serve Medicaid beneficiaries. States have long used supplemental payments in Fee-For-Service (FFS) Medicaid and state-directed payments (SDPs) in Medicaid managed care to increase provider rates. This helps ensure that Medicaid beneficiaries have sufficient access to covered benefits. CMS’ proposal goes far beyond statutory requirements in the so-called One Big Beautiful Bill Act (OBBBA) and creates a direct threat to Medicaid access and health care infrastructure, particularly in low-income and rural communities.

“State-directed payments and Fee-For-Service payments are longstanding legal payment mechanisms that are already subject to significant federal scrutiny,” said Geraldine Doetzer, Senior Attorney at the National Health Law Program. “If finalized as proposed, these new rules represent a dramatic clampdown on how states can fund their own Medicaid programs, and will place millions of Medicaid beneficiaries at risk of losing access to vital services.” 

Under OBBBA (also known as H.R. 1), states that have expanded Medicaid are required to cap SDPs for four specific provider types so that they cannot pay more than 100% of the Medicare rate (110% in non-expansion states). The proposed rule, however, moves well beyond what is required by the law, extending these payment limits to all services under SDPs in all states and U.S. territories.

Additionally, the rule proposes new limits on certain fee-for-service (FFS) Medicaid payments, which were not included in OBBBA at all. Lowering provider payments will reduce access to services in settings ranging from hospitals and nursing facilities to primary care offices and other community-based providers.

The agency claims the current proposal will result in over $500 billion in federal Medicaid cuts in the next ten years, over three times what Congress estimated for OBBA’s SDP cuts, illustrating the significant expansion of this proposal.

Read the article here

Read the Fact Sheet from CMS here

HHS launches AI-powered audit crackdown on states, grantees   

By Jakob Emerson, Becker's Hospital Review, May 21, 2026

HHS has unveiled a department-wide initiative to pursue states and grantees that have repeatedly failed to address deficiencies flagged in federally required audits, with consequences that could include losing access to federal funding across programs that include Medicaid.

The initiative, called AERO (Audit Enforcement and Risk Oversight), uses “next-generation AI analytical tools” to scan at least five years of audit history across all 50 states, the agency said May 21. The Wall Street Journal reported the tool was built in part using ChatGPT. HHS said it sent letters to all 50 state governors and treasurers putting them “on notice” of the new initiative.

Gustav Chiarello, HHS assistant secretary for financial resources, is leading the effort. He estimated the department has between $100 billion and $200 billion in wasteful or fraudulent spending annually, according to the WSJ. The letters to states did not include a deadline for corrective action or a timeline for when HHS might begin withholding funds.

The WSJ also reported the initiative grew out of Mr. Chiarello’s review of child care fraud in Minnesota, and that HHS is scrutinizing funding that flows through major universities to subgrantees. While Medicare operates under a separate audit framework, Mr. Chiarello told the outlet that HHS plans to expand oversight there as the program develops.

AERO is the latest development in a broad federal fraud enforcement push that has accelerated in the first half of this year, including Medicaid funding deferrals to Minnesota and California, Medicare enrollment freezes, and a requirement that all 50 states audit their Medicaid providers.

Read the full article here

CMS Plans To

Train Entire Agency In AI As Part Of Push To Integrate AI In Rulemaking

Inside Health Policy, May 20, 2026

As part of an ongoing effort to fully integrate AI into rulemaking, CMS plans to train all 6,000 employees on artificial intelligence by the end of the year and aims for CMS to become an “AI-first” agency, top agency officials said Wednesday.

CMS Administrator Mehmet Oz and CMS Chief of Staff and Deputy Administrator Stephanie Carlton unveiled a new five-year strategic framework for the agency at an event hosted by the Bipartisan Policy Center Wednesday (May 20). The two emphasized internal AI training as part of the framework’s “leading payor” pillar.

“We have a colleague we recruited from the University of Chicago [who] clerked at the Supreme Court, [a] leading economist on technology, and he's just a guru about using [AI] in his day-to-day lives,” Carlton said. “He's so productive, and we have him starting to train our team, starting with us. We have him do us tutorials, and he's launching that sort of train-the-trainer, where we'll go train leadership teams, they're going to train their teams, and it cascades on down so that all 6,000 people, by the end of this year are able to use artificial intelligence in their day to day activities.”

Besides becoming the leading payor, the framework focuses on three additional key points: making America healthy again, crushing fraud and driving affordability.

MAHA Priorities

Much of the discussion around the “Make America Healthy Again” portion of the framework also centered around expanding the use of AI, both in the agency itself and for beneficiaries.

Crushing Fraud

Mitigating fraud “is mostly about having the will to address it,” Oz said, suggesting the Biden administration was too focused on enrolling more people in insurance programs.

Oz also recounted recent Trump administration efforts to combat alleged home and community-based services (HCBS) fraud in California and New York, including last week’s announcement that CMS would pause $1.3 billion in Medicaid reimbursements.

“We have got to give the right incentives for people to make the right decisions,” Oz said. “Although most people will do ethically what's right for their patients, most isn't good enough. We have to build guard rails that force us to make some difficult decisions."

Read the full article here

Supreme Court Punts On Deciding How Intellectual Disability Is Defined

By Michelle Diament, Disability Scoop, May 22, 2026

Months after the U.S. Supreme Court heard arguments in a case that advocates said could have major implications for intellectual disability and how it is defined, the justices said never mind.

The high court dismissed a case known as Hamm v. Smith on Thursday, with a majority of justices indicating that they should not have accepted it.

The question before the court was how multiple IQ scores should be factored when evaluating whether a person qualifies for a diagnosis of intellectual disability.

The case focused on whether Joseph Clifton Smith, who was convicted of capital murder, has intellectual disability. Smith has taken five IQ tests, with scores ranging from 72 to 78. The state of Alabama contended that Smith should be eligible for execution since his IQ scores were consistently over 70, but attorneys for Smith argued that given how low his scores were, the court should consider additional evidence.

More than two decades ago, the Supreme Court determined in Atkins v. Virginia that executing people with intellectual disabilities is cruel and unusual punishment and violates the Eighth Amendment. Additional cases since then have validated that decision and reinforced that clinical standards should be used to determine who falls into this category as opposed to relying on an IQ score alone.

Several disability advocacy groups warned that a decision in the case could have wide-ranging implications and they urged the high court to retain an established clinical framework — factoring whether a person has significant limitations in intellectual functioning and adaptive functioning that arose before adulthood — to assess claims of intellectual disability.

The majority opinion from the Supreme Court was unsigned and did not offer any reason for dismissing the case. But, in a concurring opinion, Justice Sonia Sotomayor said that there was not sufficient evidence presented in the litigation to address how to assess multiple IQ scores.

“The court is not equipped in this case to provide any meaningful guidance on how courts should assess multiple IQ scores,” wrote Sotomayor who was joined by Justice Ketanji Brown Jackson.

Justice Samuel A. Alito Jr. dissented, joined by Chief Justice John G. Roberts Jr. and Justices Clarence Thomas and Neil M. Gorsuch.

“By instead remaining silent, the court exacerbates the confusion that plagues our jurisprudence in this area,” Alito wrote.

Thomas also issued his own dissent in which he said that the Atkins decision protecting people with intellectual disability from execution should be overturned.

As it stands, however, the Atkins decision remains in effect.

Read the full article here

Opinion: Protect the rights of students with disabilities

By Margaret Thornton, Chattanooga Times Free Press, May 16, 2026

Once upon a time, a little-known agency within the U.S. Department of Education known as the Office of Special Education Programs was able to help students with disabilities whose access to schooling had been compromised. Agency officials would teach schools how to correct behaviors in an appropriate and supportive manner.

During the Obama administration, for instance, when parents and advocates brought complaints that students with disabilities were being improperly restrained, agency staff worked with states to ensure that students with disabilities were receiving appropriate discipline, not abuse. But now that many of these officials have been fired, families are being left on their own to monitor rights violations of kids with disabilities, who comprise nearly 15% of all public education students.

Since the start of President Donald Trump's second term, the Office of Special Education Programs has seen its staffing cut in half. Now, the fears of families and children with disabilities are coming to fruition. Children are again being physically restrained in school and not allowed to switch districts (a right afforded to their peers).

Many special education staff who lost their jobs were responsible for making sure that states and school districts follow the law known as the Individuals with Disabilities Education Act (IDEA). Passed in 1975, the law added to decades of recognition that children with disabilities have a right to a free and appropriate education in the least restrictive environment possible, the same access enjoyed by other students.

But the law also must be enforced.

Not surprisingly, there has been a dramatic increase over the past several years in disputes about special education, such as not providing students' legally required instructional time. Meanwhile, a recent report from the office of Sen. Bernie Sanders, I-Vermont, found that the resolution of complaints alleging disability discrimination at the Department of Education's Office for Civil Rights are reaching historic lows.

These protections need to be reinstated. Until then, interested parties — states, universities, nonprofits and individuals — can band together to create guardrails that protect children with disabilities in school.

Continued

A New York school district locked Akwesasne Mohawk children with disabilities in boxes. No one got fired.

Byy Courtney Wise, MindSite News, May 20, 2026

Over a century and a half, at least 3,100 Native American children died as the U.S. government forced them into boarding schools where their languages and traditions were violently repressed, according to the Washington Post.

Today, the collective memory of that horror feels fresh as residents of a small network of upstate New York communities, which includes parts of the St. Regis Mohawk Reservation, tell NPR of a disturbing disciplinary practice inflicting similar institutional harm against Native children, who were confined in wooden boxes called “calming stations.”

The Salmon River Central School District, where roughly two-thirds of students are Mohawk, confirmed that special education staff constructed and used wooden boxes to confine disabled elementary students during November and December of 2025.

“It was so unfathomable that our children were seeing these boxes and hearing children screaming in these boxes,” said Sarah Konwahahawi Herne, a parent and member of the tribal community.

Children were placed inside the boxes, with the door held shut, for a “timeout.” The scandal broke following a post on social media, since school officials did not notify parents — further violating state regulations against corporal punishment and isolation.

“None of us could believe initially that was true,” St. Regis Mohawk Tribal Chief Michael Conners said. “It was verified that it was and it was defended as legal. Nobody could believe it was legal to have that in our schools, with the intent of using that box on our children.”

New York’s state education department has since issued a compliance order requiring sweeping reforms in the district. Its investigation confirmed that at least five elementary-age students with disabilities had been confined to the boxes.

Continued

A Louisville mother hid a camera in her son’s locs. Now, she’s fighting for answers

By Bobby Pen, The Grio, May 16, 2026

A Louisville mother says she took matters into her own hands after growing concerned that her nonverbal autistic son could not tell her what was happening at school.

Tiphanee Lee says she secretly placed a recording device in the hair of her 7-year-old son, Semaj, after weeks of what she described as unexplained behavior concerns at Field Elementary School in Louisville, Ky., as reported by WLKY. Now, her recording has prompted abuse allegations, an investigation by Jefferson County Public Schools, and renewed questions about how schools protect children who cannot always speak up for themselves.

Lee said Semaj, who has severe nonverbal autism, had been getting in trouble at school for behavior she believed was out of character. After she said the school denied her request to sit in class and observe him, Lee hid a camera in her son’s thick dreadlocks to better understand what was happening during the school day.

According to Lee, the recording appears to capture an assistant teacher yelling aggressively at Semaj and possibly shoving or striking him. WLKY reported that because the camera was hidden, the video does not clearly show the interaction. However, audio from the recording reportedly captured the staff member yelling, and Semaj can be heard screaming near the end of the recording.

For Black parents, especially those raising children with disabilities, the story hits a familiar and painful nerve: the fear that when something goes wrong in a classroom, their child may not be believed, protected, or fully understood.

“No parent should have to question whether their child is safe at school. No child should suffer in silence because they cannot speak,” Lee said during a Friday press conference. “My son has severe non-verbal autism. He cannot speak, but I can.”

Continued

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

By Amy Silverman and Athena Ankrah, KJZZ. May 20, 2026

Arizona’s Home and Community-Based Services for people with disabilities could be on the chopping block this year because of federally driven Medicaid cuts. One reason is that Medicaid isn’t required to cover the services.

Patricia Huber’s day begins with a lift.

Each morning, her mom steps into Tricia’s suite — a living area, bedroom and bathroom, all decorated in hot pink — and helps her daughter prepare for the day.

On a recent spring afternoon at the family’s home in south Phoenix, Cindy Middlestadt walks through the average morning routine while Tricia (she also goes by Trish) and her dad, Mark Huber, look on. A machine whirs across the ceiling with a hook and straps that can lift Trish from bed and into her motorized wheelchair, or to a mesh shower chair.

“This goes up and down and then uses a sling to attach her to [the ceiling lift],” Middlestadt says. “And then she just goes from here into her shower room. So I'll show you. … She's got her bathing system, rolls in and out.”

Tricia has cerebral palsy — specifically, spastic quadriplegic cerebral palsy. There are different kinds of CP that impact people in different ways, similar to autism and other developmental disabilities. For the lanky, short-haired 39-year-old, the condition means limited mobility and speech. Trish depends on her mom and other caregivers to help her out of bed, into the shower, into fresh clothes, to eat.

And that’s just the morning.

“I need help 24 by seven,” Tricia says.

It’s harder for people who don’t know her well to understand what Tricia is saying. Out of habit, her mom repeats for her: “I need help 24 by seven.”

Cindy and Mark know this well. Since relocating to Arizona from Alaska several years ago, the family has struggled to get Tricia services. The litmus test for qualifying for Home and Community Based Services (HCBS) under Medicaid is whether an individual would need to be institutionalized if they didn’t receive any government assistance. Even though Tricia requires 24/7 care, her family had to apply several times before Arizona’s system accepted her. They later found it difficult to hire caregivers because of the shortage —Tricia only has one aside from Cindy, recently.

Just before publication, Cindy learned that after waiting for five years, Tricia will now be receiving part-time nursing assistance.

Even so, the Medicaid services Tricia does receive are a lifeline — and not just for Tricia. Cindy is 56. Mark’s 65. Decades of caregiving have taken a physical and financial toll.

“From a physical capacity, my body is shot,” Middlestadt says. “You don't see it, but I've got torn shoulders … I can't even have surgery, though, right now because we don't have adequate care.”

For Tricia, the few services she does get might soon be eliminated.

Home and Community Based Services in Arizona are under threat because of anticipated cuts to Medicaid mandated by the sweeping federal budget bill, H.R. 1, signed into law last year. Technically, Medicaid is not required to fund HCBS.

Continued

Georgia - Nearly 8,000 Await Medicaid Waiver as State Cuts Budget for 400 Spots, Council Says

By Staff, The Georgia Virtue, May 20, 2026

The Georgia Council on Developmental Disabilities (GCDD) is deeply concerned about the impact of the final state budget on Georgians with intellectual and developmental disabilities (I/DD) and their families. The approved budget allocated 100 new NOW/COMP waivers. The $300 million in budget disregards made by Governor Brian Kemp included $9,274,016 that would have funded 400 new waivers.

The decision comes despite a Department of Behavioral Health and Developmental Disabilities analysis showing that 1,217 Georgians are currently in urgent need of NOW/COMP waivers due to risks including institutionalization, homelessness, medical crisis, or loss of a primary caregiver.

“GCDD is committed to making sure policymakers and the public have clear, accurate information about the needs of Georgians with developmental disabilities and their families,” said D’Arcy Robb, Executive Director, GCDD. “There are thousands of people on the waitlist whose safety and wellbeing depend on access to these services, and we believe it is important to share the reality about what that means in practice.”

Currently, there are nearly 8,000 people with I/DD on Georgia’s Medicaid Waiver waitlist. NOW/COMP waivers provide home and community-based services that allow people with developmental disabilities to live safely in their communities rather than institutions.

Kelly Fields, the parent of a child with I/DD, shared her family’s experience: “After parents across Georgia courageously shared their stories before the budget committee in February, policymakers publicly acknowledged the urgent need for 1,217 additional NOW/COMP waivers for individuals with intellectual and developmental disabilities, only for the final budget to allocate 100. For families like mine, who have spent over a decade waiting on the Planning List while our children age out of school-based services, this was not simply a budget decision; it was a devastating loss of hope. Behind every one of those remaining 1,117 unfunded waivers is a real person, a real caregiver, and a family still being told to continue waiting for critical services through Georgia’s NOW/COMP Waiver program. Georgia’s most vulnerable citizens deserve a system that truly works for them.”

Continued

New York - Jawonio opens HEART food pantry to support staff and community

By Diane Caruso, News 12 Westchester, May 14, 2026

Jawonio has opened a new food pantry on its New City campus, offering support to both its workforce and the individuals they serve. The pantry, named Helping Employees and Individuals Access Resources Together — or HEART — was created to help direct support professionals and the people in their care who may be struggling with food insecurity.

The pantry is supported through a grant provided by The Mother Cabrini Health Foundation and New York State Industries for the Disabled, Inc.

The pantry was bustling on Thursday as dozens of people stopped by, including Eric, who was picking up food for his household.

"It works out that I can grab a couple of things that we might need at home. So it works out perfect," he said.

Katherine, a direct support professional and instructor with Jawonio, was packing bags for individuals she works with who use wheelchairs.

"Things are very challenging these days. And so this really does help with filling in some of the gaps where there might be some food insecurities with certain people," she said.

Jawonio CEO Randi Rios-Castro said the pantry is a response to the financial strain many staff members face.

"Many of our staff work overtime. They still struggle with paying for food. Paying for their rent. So this is just our way of kind of trying to help them where we can," she said.

Continued

Please share this offer with your loved one's

Direct Support Professionals!

VOR ❤️s OUR

DIRECT SUPPORT PROFESSIONALS!

Our loved ones' caregivers are essential to their health, safety, and happiness.

In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to receive our newsletter.

We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.

If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at

info@vor.net

with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.

[Please click on blue link to view information about the bill]

VOR SUPPORTS:

H.R.6137 / S.3211 - Rep. Brian Fitzpatrick (R-NJ) and Sen. Maggie Hassan (D-NH) - 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.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 indiviiduals 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. 

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