July 10, 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.

Who Are Direct Care Workers and How Might Federal Policy Changes Impact the Workforce?

By Priya Chidambaram, Drishti Pillai, and Alice Burns, KFF, July 9, 2026

Long-term care (LTC) encompasses the broad range of paid and unpaid medical and personal care services that assist with activities of daily living (such as eating, bathing, and dressing) and instrumental activities of daily living (such as preparing meals, managing medication, and housekeeping). The Department of Health and Human Services (HHS) reports that after age 65, over half of people will at some point need help with at least two activities of daily living, over half will use paid LTC, and over one-third will use some nursing home care. People under 65 with disabilities also rely on LTC for assistance with activities of daily living and instrumental activities of daily living. Medicaid is the primary payer for long-term care (LTC), and KFF analysis of Medicaid claims data found that over half of people who used any Medicaid LTC were under 65. 

Direct care workers play a pivotal role in providing LTC services. They perform demanding, high-stress work for low wages and often no benefits. This has contributed to the long-standing shortages and high turnover rates among direct care workers in both home care and institutional care settings. Recent federal policy changes could further exacerbate the challenge of retaining and growing the workforce to care for the aging population. Specific policy changes that could exacerbate these challenges include the following.

• Broad changes to Medicaid, including $911 billion in reductions to federal spending and Medicaid work requirements, could have implications for the direct care workforce given Medicaid’s outsized role in LTC spending and relatively high Medicaid coverage rates among direct care workers.
• Direct care workers may also feel the impacts of recent changes in immigration policy. Three in ten direct care workers are immigrants, including naturalized citizens and noncitizens, who include lawfully present and undocumented immigrants. The Trump Administration’s intensified immigration enforcement and restrictive policies are deepening anxiety and fear among immigrants of all statuses and could contribute to reduced immigration in the future, which could exacerbate workforce shortages.
• Two proposed rules from the Department of Labor may also have an impact on direct care workers. One rule would roll back minimum wage and overtime protections for home care workers. The other rule would make it easier for employers to classify direct care workers as independent contractors, which would strip them of some labor protections.
• CMS has also delayed enforcement of a provision in the Medicaid Access Final Rule that would have required states to establish an advisory group to provide recommendations on direct care worker provider rates.

Key takeaways include:

• In 2024, there were 2.3 million direct care workers who provided long-term care to people ages 65 and older and people under 65 with disabilities (Figure 1).
• Direct care workers are significantly more likely to be age 50 years or older, female, Black or Hispanic, or immigrants when compared to all other adult workers in the U.S. (Figure 2).
• Direct care workers are also significantly more likely to have a high school degree or less, work part-time, be low-wage, or be covered by Medicaid or be uninsured when compared to all other adult workers in the U.S. (Figure 2).
• The share of direct care workers who are immigrants varies by state, ranging from 0% in Wyoming to 60% in New York (Figure 4).
• At least one in five immigrant direct care workers is from a country within the 75 countries that are part of the Trump administration’s immigrant visa pause, which could further strain the workforce in future years (Figure 5).

Read the full report here

Trump immigration cuts could worsen US caregiver shortage, experts say

By Melody Schreiber, The Guardian, July 9, 2026

The Trump administration may remove the temporary protected status (TPS) of Haitians and Syrians in the US, the US supreme court ruled in late June – a move that will worsen America’s growing caregiver shortage, experts say.

The US is now experiencing its fastest increase in the aging population in more than a hundred years, and more than 20% of the US population will be 65 or older by 2030. But the population of caregivers has not grown at the same pace, leading to staffing shortages.

Immigrants account for about one in six workers in the US – but they comprise about 30% of caregivers in longterm settings. The caregivers, often nurses and aides in hospitals, facilities, and homes, come from at least 163 countries, and Haitian immigrants are strongly represented at 7% of that workforce, according to a report from LeadingAge, the national association of non-profit and mission driven providers of aging services.

“Foreign-born staff are significant contributors to care and services our members provide, and that older adults and their families rely on,” said Lisa Sanders, vice-president of communications and media relations at LeadingAge. “Without staff, there is no care.”

The US House passed a Haiti TPS extension in April, but the Senate has yet to take action on an extension.

Allowing the TPS status of Haitians to expire will further exacerbate the caregiving crisis, as Haitians on temporary status will be forced to stop working as soon as the status expires, said Nixon Pierre-Louis, a Haitian-American citizen who works two jobs as a licensed practical nurse in Delaware.

“That’s going to leave the institution or the facility where you work short, and that’s going to affect the resident or the client that you’re taking care of,” Pierre-Louis said. He works with patients who need assistance with daily living – feeding, toileting, bathing. “They depend on you… The clients and the residents are also going to suffer because there is no one to take care of them, and that can also lead to illness and infection.”

As Haitians on TPS status are forced to stop working, their duties will fall on already-stressed colleagues, Pierre-Louis said, noting: “It’s just a circle. Not only does it affect residents or clients, it also affects co-workers.”

It also puts pressure on longterm caregiving facilities and home health agencies, which may not be able to care for new patients amid staff shortages. Finding, training, and retaining new staff is a difficult, expensive process.

Continued

Trump Administration Sued Over Medicaid Changes

By Michelle Diament, Disability Scoop, July 6, 2026

Half of states are suing over new Medicaid eligibility requirements that advocates have warned will lead people with disabilities to lose coverage.

A coalition of officials from 25 states and Washington, D.C. filed a lawsuit last week challenging recently released rules for Medicaid work requirements.

Under the mandate, which most states must implement by the beginning of next year, many beneficiaries will need to prove that they are working, volunteering or going to school at least 80 hours per month in order to retain coverage.

The new requirements were part of a sweeping law Congress approved last summer that included nearly $1 trillion in Medicaid cuts. The measure does include exemptions for people who are “medically frail” or who have “special medical needs” including those with physical, intellectual or developmental disabilities. However, an interim final rule issued by the Centers for Medicare and Medicaid Services, or CMS, in early June set narrow limits on who qualifies.

Not only will individuals need to have a qualifying condition, but that condition must also significantly limit their ability to work, according to the interim final rule.

In the lawsuit filed against CMS and the U.S. Department of Health and Human Services, the states allege that the Trump administration’s interim final rule is more restrictive than Congress intended. The complaint also names CMS Administrator Mehmet Oz and HHS Secretary Robert F. Kennedy Jr.

“People with disabilities, patients in the middle of cancer treatment, or those struggling with another serious or complex health condition, shouldn’t be at risk of losing the care that helps maintain their health,” reads the lawsuit filed in the U.S. District Court for the District of Massachusetts. “Nowhere in (the law) does Congress state that individuals’ ability to work must be impaired in order to be ‘medically frail or otherwise have special medical needs,’ or to have a ‘serious or complex medical condition.'”

The states say that the rule puts them in an “untenable position” and violates the Administrative Procedures Act by ignoring “substantial evidence” that the “added administrative burdens will cause individuals who are eligible for Medicaid to lose or be denied coverage.” They also claim that the narrow definition of “medically frail” violates the law and that the rule fails to consider significant harms to states, Medicaid beneficiaries and others. In addition, the lawsuit alleges that the rule is unconstitutional since it imposes new requirements that run counter to preliminary guidance provided by federal officials, upending months of planning.

Continued

Disability rights advocates rally at Texas Capitol, urge state to drop out of lawsuit

By Daniel Perreault, KVUE News, Jyly 3, 2026

Disability rights advocates rallied at the Texas State Capitol on Friday, urging Texas Attorney General Ken Paxton to withdraw from a lawsuit they say threatens crucial protections for people with disabilities.

In September 2024, when former President Joe Biden was in office, Paxton filed a lawsuit against the federal government, asking to remove gender dysphoria from the definition of disability in Section 504 of the Rehabilitation Act.

At the time, Paxton said expanding the definition would take resources away from people with what his office called "genuine disabilities."

Established in 1973, the law provides protections against discrimination for people with disabilities in schools, housing, health care, and entities that receive federal funding.

It also requires physical access to buildings and curbs.

“504 is at the base of my liberty, my rights as a person with disabilities,” Ron Cranston said. “It's imperative to have access. Programmatic, architectural and attitudinal access.”

State Sen. Sarah Eckhardt (D-Austin), who is also running as the Democratic nominee for Texas Comptroller in November, called it “an outrageous attack on the Rehabilitation Act.”

“The Rehabilitation Act only requires services in the least restrictive, appropriate setting. That is the floor, not the ceiling,: Eckhardt said. "The idea that our state, the second wealthiest state in the nation, one that is more than capable of meeting that floor, is asking the courts to be relieved from this regulatory burden...this is an outrageous attack."

Lauren Peña, the Republican nominee for Texas' 37th Congressional District, which includes a large portion of Austin, also called on the state to withdraw from the lawsuit.

“Please drop out of this lawsuit and protect my neighbors, protect my family and protect my community from programs that are being funded through the federal government that are not complying with ADA, violating our 504,” Peña said.

Advocates said if the lawsuit succeeds, it could lead to the elimination of Section 504 entirely, jeopardizing those safeguards.

“Texas versus Kennedy is a direct threat to a fundamental right for people with disabilities, the right to live independently and participate in their communities freely,” State Rep. Donna Howard (D-Austin) said. “We all know the outcome of this lawsuit could upend the lives of millions of people across this country and will open the doors to policies that exclude, discriminate against, and institutionalize people with disabilities. We know our loved ones will suffer.”

Initially, Texas and 17 other states sued, but several have dropped out, leaving only six, including Texas. The remaining states in the lawsuit have said they do not intend to dismantle Section 504 entirely. Instead, they aim to prevent its application to gender dysphoria.

Advocates are concerned that a ruling against Section 504 could have unintended consequences, potentially undermining other disability rights laws, such as the Americans with Disabilities Act.

“If this goes through and makes it to the Supreme Court, it could mean that every state would have the ability through the law not to give access to people with disabilities, whether you're blind, whether you're deaf, whether you have a physical disability like myself, whatever the disorder is,” Cranston said. “This is just the same as losing access if they enact and it goes through the Supreme Court.”

Continued

Massachusetts - Opinion:

Controversial U.S. Department of Justice memo offers support for Intermediate Care Facilities

By David Kassel, the COFAR Blog, July 8, 2026

A new legal memorandum from the U.S. Department of Justice signals a change in philosophy in the federal government toward supporting Intermediate Care Facilities (ICFs) for individuals with intellectual and developmental disabilities (I/DD), such as the Wrentham and Hogan centers in Massachusetts.

The memo, which was issued on June 18 by the DOJ’s Office of Legal Counsel, has ignited a firestorm of dissent among disability advocates who support the closures of ICFs. It has even generated concern among some supporters of ICFs who say the memo may nevertheless have gone too far in preventing community-based placements.

Overall, the DOJ memo appears to validate what we have said for years, which is that the 1999 Olmstead v. L.C. U.S. Supreme Court decision did not order states to close ICFs and place everyone in the community-based system of residential care.

We have argued that eligible individuals with I/DD have a federal right to ICF care; yet the state Department of Developmental Services (DDS) has blocked almost all admissions in recent years to the Wrentham and Hogan centers. As a result, those facilities are continuing to lose residents and are on a closure trajectory.

As we have maintained, DDS and other opponents of ICF care have misrepresented the Olmstead decision as ordering an end to all institutional care.

The DOJ memo argues that neither Title II of the federal Americans with Disabilities Act (ADA) nor Olmstead created or upheld a community “integration mandate,” and that Olmstead held that institutionalization is not discriminatory if it is justified by factors such as the individual’s needs and resource limitations in the community.

As the DOJ memo stated in its interpretation of Olmstead,

Before committing a patient with mental disabilities to an institution—or upon request for a transfer by a patient currently institutionalized—states should assess the appropriateness and feasibility of both institutional and community-based treatment options and make a decision based on a non-arbitrary rationale. (Our emphasis)

We support both the ICFs and the community-based system

We agree with the following statement made by our partner organization, The Saving Wrentham and Hogan Alliance, in a recent analysis of the DOJ memo:

We do not believe that congregate care is inherently superior to community-based living, or that families who choose Home and Community Based Services (HCBS) are making a wrong choice. We believe in choice — genuine, funded, legally secured choice — and we believe that choice is the mechanism through which quality in any service system is actually produced.

The problem is that Massachusetts and other states, inappropriately citing Olmstead, have been letting ICFs like Wrentham and Hogan slowly die by attrition. This threatens to eliminate a critical backstop for care in the overall DDS system.

The DOJ memo took note of the potential danger in eliminating congregate care by highlighting a claim by Justice Anthony Kennedy of a “dark side of deinstitutionalization.” Kennedy made the claim in a concurring opinion in Olmstead in which he wrote that “patients prematurely released from in-patient care frequently end up homeless or even incarcerated.”

In addition, we think the DOJ memo correctly criticized a previous longstanding practice of the Justice Department’s Civil Rights Division of using “its integration mandate and Olmstead to pressure states into discharging individuals from mental-health institutions.” We have long raised similar concerns. As we said in 2015, “The DOJ seems to have closed its eyes to the realities on the ground in continuing to file lawsuits around the country to close state-run care facilities.”

Continued

New Jersey strengthens enforcement over group homes for people with disabilities

By Lilo H. Stainton, New Jersey Moonitor, July 3, 2026

New Jersey officials now have much sharper tools to protect people with disabilities from abuse and neglect in group homes, thanks to a law that took effect July 1 allowing for state penalties of up to $25,000. 

The law requires the state to issue a warning the first time a residential program for people with disabilities is caught causing abuse or institutional neglect, like failing to train and ensure staff is providing for residents’ needs. Additional offenses prompt a $10,000 fine, or $25,000 if it causes a resident an injury that can’t be treated with basic first aid.  

Fines will be deposited in a revolving fund in the Department of Human Services, which oversees disability programs, and can be used for quality improvements initiatives, administrative costs, and regulatory actions related to the law. About 30,000 people with disabilities live in private or group homes, the department said.  

Jonathan Seifried, an assistant commissioner at the department’s developmental disabilities division, said the law addresses accountability and, through the fund, fuels improvement.

“Our goal is a system that consistently delivers safe, high-quality services for the people who depend on them,” he said in a press release.  

Signed by former Gov. Phil Murphy in January, the new law follows news reports that documented abuse and neglect at group homes for people with disabilities and found flaws in the state’s oversight process. Abuse has been an ongoing concern for the New Jersey ombudsman for individuals with intellectual or developmental disabilities and their families.  

Abuse and neglect are “rampant,” according to the office’s most recent annual report from 2024, issued by then-ombudsman Paul Aronsohn. While some provider agencies do all they can to prevent harm, he said, other agencies “are not as vigilant or serious, and frankly, our State government does not do enough to prevent or stop the abuse and neglect.”

Under the new law, the state can also issue penalties of $10,000 to facilities that repeatedly fail to conduct criminal background checks on employees when required, don’t follow the protocol when staff members test positive for drugs, don’t properly investigate a reported incident, or don’t follow a state-mandated plan for reform. It also updates the list of employees who must report abuse or neglect.  

Continued

New Hampshire - New protections for people with disabilities in state care signed into law

By William Skipworth, New Hampshire Bulletin, July 6, 2026

A bill aimed at protecting people with disabilities from abuse and neglect is now law.

Senate Bill 670 creates a developmental services oversight commission responsible for reviewing the state-regulated, taxpayer-funded care system for people with disabilities. The commission will be made up of lawmakers, state officials, private providers, advocates, parents of people with disabilities, and people with disabilities themselves. It will be responsible for reviewing performance measures, licensing and certification data, and best practices, and suggesting ways to improve the system.

The new law also speeds up the timeline in which caregivers are placed on the state’s registry of abusive and neglectful caregivers after an allegation. Currently, they’re not placed on the registry until after an investigation. This law ensures the registry notes that they’re under investigation and will remove or solidify their position on the registry after an investigation.

Additionally, it attempts to beef up data sharing within this system, allowing officials from disparate parts of state government to share information that might help administrators identify issues. Several experts and advocates in the field have raised alarms about so-called “silos of information” where various offices within the state agencies responsible for overseeing this system are unable to share information and lack a big-picture view of the system’s performance.

Finally, SB 670 will also require private providers to notify the Health and Human Services commissioner, the Bureau of Licensing and Certification, the attorney general, and the Disability Rights Center-NH of any deaths or serious injuries.

State Sen. David Rochefort, the Littleton Republican behind the new law, said during a hearing earlier this year that a November investigation by the Bulletin was “the genesis for this bill.”

In “A System of Harm,” a three-part investigative series, the Bulletin reported on horrific abuse, neglect, and deaths occurring in the state’s disability care system. In New Hampshire, people with intellectual and developmental disabilities are legally entitled to care services. To administer the care, the state contracts with a network of private providers.

The Bulletin found systemic failures in protecting vulnerable clients. State records obtained by the Bulletin show 548 credible reports of abuse, neglect, and exploitation in this system from 2023 through 2025. (The Department of Health and Human Services told the Bulletin that it discovered its own data may include overcounts, but has refused to provide an updated number.) Additionally, there were 144 deaths in the system across the same time period, according to the records.

Continued

Illinois - Group Homes Owned By Private Equity Could Face Added Scrutiny

By Olivia Olander, Chicago Tribune and Disability Scoop, July 8, 2026

By the time Illinois notified group home provider Broadstep two years ago that it was revoking its license, the list of problems documented by state investigators spanned nearly seven pages.

Expired medications. Incomplete background checks. “Critical incidents,” which may have included medical emergencies and other events that spurred 911 calls, not reported properly. And some employees without proof of high school diplomas, GEDs or required literacy tests.

The list went on.

Broadstep was one of the larger group home providers in Illinois for people with intellectual and developmental disabilities, according to a 2024 state audit, though a small number of providers had many more sites. And its collapse became a flashpoint in a broader debate over its onetime owner — a private equity firm — and the growing role such owners have in an industry the audit said in 2023 served more than 3,100 licensed sites and about 11,000 people with developmental disabilities statewide.

Earlier this year, that debate produced legislation now on Gov. JB Pritzker’s desk requiring greater transparency from investment firms that buy group homes for people with disabilities.

The bill, which passed the General Assembly this spring with broad bipartisan support, requires facilities for people with intellectual and developmental disabilities to report to the state when they are purchased by an asset management company — such as a private equity fund, hedge fund or venture capital firm.

After a community integrated living arrangement — commonly known as a group home or CILA — or other licensed facility for people with disabilities is purchased by such a firm, it would have to regularly report financial activity, including assets, liabilities and staffing levels, to the state Health Facilities and Services Review Board.

They would also have to notify the state before selling off parts of the business and certify that the sale would not leave the facility financially distressed, a provision the American Federation of State, County and Municipal Employees Council 31 has branded a first-in-the-nation “anti-looting” measure.

Entities that fail to report would face fines, and the board would notify the state agency that issues the facility’s license.

Democratic state Sen. Javier Cervantes, one of the bill’s sponsors, said the goal is oversight, not exclusion.

“So I think these are more of — ways to create guardrails. I think one facility dealing with this for me is enough, right? I think that’s one too many,” he said. “I don’t have a problem with them coming in here and investing, but as long as they’re — they don’t do any looting, they don’t do things that will run down the facility.”

Continued in Disability Scoop

Also available in the Chicago Tribune

Virginia - Lawmakers pause decision on closing Hiram Davis hospital. Here's why

By Bill Atkinson, Petersburg Progress-Index, July 8, 2026

After more than an hour of deliberation on whether Hiram Davis Medical Center should be closed and patients relocated, the Joint Commission on Healthcare is pausing its decision until more information can be obtained.

"We're going to try again," state Sen. Barbara Favola, D-Arlington County and the commission chair, said following the intense debate on the issue at the JCHC meeting July 8.

Favola said she and two other commission members − Sen. Creigh Deeds, D-Charlottesville, and Del. Patrick Hope, D-Arlington County − will draft a letter to the state Department of Behavioral Health & Developmental Services, Hiram Davis' operator, asking for specifics about what the transition from the 50-year-old facility would mean not just for the 22 patients now in the hospital but also their families, many of whom drive to Dinwiddie County from other parts across Virginia.

"If we put a letter forward, we have to get a response back," Favola said.

Hiram Davis, located on the campus of Central State Hospital, provides acute skilled and long-term care to patients considered medically fragile in that they cannot physically, emotionally or mentally care for themselves. Two years ago, the state announced plans to close the medical center by the end of 2027. The state said renovating a five-decades-old building would be futile, costing much more to fix ($285.3 million) than close ($170 million) and relocate the patients to either Southeastern Virginia Training Center in Chesapeake or into intermediate care facilities and other community-based care centers licensed but not run by DBHDS.

Of the 22 patients currently in Hiram Davis, four of them would require skilled medical care they currently get at Hiram Davis. DBHDS said it was renovating SEVTC in Chesapeake about 70 miles further east in order to accommodate that care level, but regardless of where any of the 22 go, individualized treatment plans would follow them and be carried out just as if they were still in Hiram Davis.

Wednesday's delay was in a way expected, because at previous JCHC meetings, commissioners seemed apprehensive about the closure.

Continued

Maryland - Disability community left with heads ‘spinning’ from sudden delay of proposed wage cuts

By Danielle J. Brown, Maryland Matters, July 2, 2026

People who provide services for those with developmental disabilities learned Tuesday that wage cuts planned to start the next day were instead postponed for a few months.

While advocates welcomed the delay, some say it’s “just kicking this down the road” and creates confusion and raises concerns for what comes next.

“Our heads are spinning,” Shari Dexter, one of the co-founders of Concerned Citizens of Self-Direction Maryland, said Thursday.

She was one of thousands of families across the state who learned on June 30 that “devastating” wage cuts that were supposed to start July 1 were suddenly on hold until fall.

The wage reductions and other “cost containment” measures are part of a $126 million cut in state funds to the Developmental Disabilities Administration, which administers the Medicaid waiver that covers the behavioral and health care needs for around 19,000 Marylanders.

The waiver covers two different options for receiving those services. Some waiver recipients receive care through a brick-and-mortar community provider, while others self-direct their services by hiring their own staff and managing a budget for their service, funded by the waiver.

But due to “unsustainable” growth in enrollment and spending, lawmakers slashed funding for the DDA last year and this year. The waiver is jointly funded by state and federal dollars, so the $126 million reduction in state funding this year equates to more than $250 million in cuts to the agency factoring in federal match dollars.

That’s on top of last year’s cut of $164 million.

The funding cuts this year include reductions to community provider rates, elimination of pay bumps for self-directed staff working in specific situations, and limits on hours for family members who work as staff, among others. Some of those policies will need federal approval before they can be implemented.

State officials have received almost 1,000 public comments on the proposal since April, according to the Maryland Department of Health.

State officials had instructed community providers and people with developmental disabilities to notify staff that they would be paid less for their services starting in July. Dexter, of Concerned Citizens of Self-Direction Maryland, said that had already caused repercussions. 

“People have lost staff,” Dexter said. “We’ve had reports where the participant’s team, where they’ve lost staff. Where people have said ‘I can’t do it at this rate.’”

With discussions of a special session coming up, Dexter is urging lawmakers to use the opportunity to take another look at the DDA budget cuts and work out something different.

“It’s very hard when you have people who are very complex. Whether that’s physically or behaviorally, to get staff that truly can work with them is not easy,” she said. “There’s a lot of confusion about what comes next.”

Read the full article here

Developing a consensus research definition for profound autism using a modified Delphi method

By Matthew Siegel, Catherine L. Lord, Helen Tager-Flusberg, Judith Ursitti, Alycia Halladay & Alison T. Singer, Springer NatureLink, June 30,2026



Background

The diagnostic term, autism spectrum disorder, encompasses the full range of impairments associated with the autism spectrum, a significant change from earlier DSM definitions that identified various subtypes of autism. However, the majority of autism-related research and cultural representations in recent years has focused on autistic individuals with strong language and cognitive abilities. In 2021, the administrative term Profound Autism (PA) was proposed by a Lancet Commission to draw attention to autistic people whose impairments require lifelong, round-the-clock care. The initial definition of PA included a minimum age and requiring 24/7 access to an adult to ensure safety, and suggested considering IQ, and verbal ability when defining this group. However, researchers have subsequently utilized widely varying criteria in studies of this group, producing results that are difficult to compare and limit the potential for the identification of this group to advance knowledge about their strengths and needs.

Results

After two rounds of review and voting, 76% of the respondents agreed on a research definition of PA of: adaptive functioning well below age level, requiring adult supervision to ensure physical and mental health, safety and well-being, being at least 8 years old, diagnosed with ASD, and having severely impaired cognitive abilities (reflected by IQ score below 50) and/or not verbally communicating other than single words or fixed phrases used predominantly to have their basic needs met.

Limitations

Variations in access to measurement tools, as well as access to services across the world, limit the utility of this definition outside research practices, and a response rate of 58% yielded a final round sample size of 78 that may underrepresent portions of the stakeholder community and was overwhelmingly composed of respondents from the United States.

Conclusions

A large and varied group of researchers, clinicians, caregivers, and autistic individuals agreed that Profound Autism is a meaningful term and reached consensus above the a priori specified level on key components of a research definition. The highest levels of agreement were reached on the requirement of 24/7 access to an adult for health and safety, as well as significant impairment in adaptive functioning. The consensus definition creates the opportunity to compare datasets and health records and to spur the creation of new measures, both of which will enable an increased focus on the research questions and clinical needs of an unresearched and underserved portion of the autism spectrum. As there is evidence that the outcomes, needs, interventions, and supports for those with Profound Autism are distinct, it logically follows that clarity in identification increases the opportunity to improve those areas for both those with profound autism and those without.

Read and download the full report here

An Autism Breakthrough, or an Illusion? The Fight Over Assisted Spelling

By Azeen Ghorayshi, The New York Times, July 6, 2026

In early June, Ally Betchan and her family made the monthly trek from their small central Texas town to a therapy center in Austin, hoping that she could learn to communicate. Like nearly 30 percent of people with autism, Ally is severely disabled and does not speak.

Ally, 22, sat quietly in a small room next to her instructor, Soma Mukhopadhyay, a sprightly 63-year-old who, by contrast, talked almost nonstop. More than 30 years ago, Ms. Mukhopadhyay taught her nonspeaking autistic son, Tito, to write and type independently, creating a communication method that supporters hailed as transformative and critics have challenged ever since.

Ms. Mukhopadhyay held up a clear plastic sheet marked with the alphabet, prompting Ally to make up a story. As Ally tugged rhythmically at her purse, she slowly pointed at letters to spell “DONNA KNOWS,” and then seemed to get stuck, pointing to a jumble of letters.

“I’m so lost,” Ms. Mukhopadhyay said, shaking the sheet and pressing her to try again. As Ms. Mukhopadhyay occasionally tapped under the letter board on her thigh or leaned in the direction of a letter, Ally eventually spelled: “CARING HURTS.”

“‘Donna knows caring hurts’ — that is a life lesson,” Ms. Mukhopadhyay said, nodding in agreement. Then, Ally jabbed many letters in quick succession, but distinctly: “SHE LOVES THOSE WHO CARE FOR HER.” Sitting beside her, Ally’s mother, aunt and grandmother smiled.

Ms. Mukhopadhyay’s technique, called the Rapid Prompting Method, or R.P.M., is one of several intended to help nonverbal people learn to communicate using letter boards held in midair by another person. At the core of these assisted spelling methods is a radical assertion: that nonspeaking autistic people, many of whom have been considered intellectually disabled their whole lives, may have typical or even extraordinary cognitive abilities, obscured by motor problems and an overwhelmed sensory system that has cut them off from the world around them.

Proponents of assisted spelling say it has improved the lives of thousands of nonspeakers, some of whom have used it to write memoirs or obtain graduate degrees. Yet despite the potentially profound implications of these communication methods, there has been remarkably little scientific research evaluating them. Citing the risk that the person holding the letter board may influence the messages, and a history of such abuses with prior assisted communication methods, many medical groups have cautioned against them.

All of this has led to a growing debate dividing autistic people, families and the scientific community. The central question is less about whether breakthroughs like Tito’s are possible, but whether they are as widespread as many proponents claim. Do assisted spelling methods reliably reveal a person’s own thoughts, or do they give families a false sense of their loved ones’ inner world and capacities?

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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