May 1, 2026

VOR's Weekly News Update

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Kennedy's US advisory board puts focus on 'profound autism', improved medical care

By Robin Respaut, Reuters, April 28, 2026

A U.S. advisory committee appointed by Health ​Secretary Robert F. Kennedy Jr. recommended on Tuesday that the government adopt the term "profound autism” for those with the ‌highest support needs, and improve gaps in medical care for people with autism.

The Interagency Autism Coordinating Committee helps guide federal autism research spending, worth about $2 billion annually, and coordinates efforts among government agencies, such as the National Institutes of Health and the Centers for Disease Control and Prevention.

In January, Kennedy appointed a new chairperson ​and all 20 public members on the board. Another 22 members represent federal agencies.

More than a third of the health ​secretary's newly appointed members have promoted the debunked link between vaccines and autism that Kennedy has championed, contrary to ⁠established science, alarming some autism researchers. Most of the committee's public members are parents of autistic children or people with autism.

Kennedy has made autism ​a signature issue of his tenure and highlighted the plight of autistic individuals with the highest need for support throughout the course of ​their lives.

In 2021, the Lancet Commission, an international expert panel that assesses autism research and services, designated people with profound autism as those with severe intellectual impairment or minimal verbal communication, and the need for full-time access to a caregiver. In 2023, the CDC estimated that 26.7% of 8-year-olds with autism qualified as profound.

The ​spotlight on high needs has been welcomed by some advocates who say those with profound autism were left behind as the definition and ​diagnosis of autism spectrum disorder expanded in recent years to include many high-functioning individuals. Others in the autism community oppose the designation as unnecessary and stigmatizing.

"Individuals ‌with ⁠the greatest medical complexity and functional support needs are the most excluded from the research designed to help them," said IACC Chair Dr. Sylvia Fogel, a psychiatry instructor at Harvard Medical School and parent of a child with autism.

"Existing systems do not reliably capture individuals with the highest support needs, and it's why a functional designation of profound autism, in my opinion, is needed."

Continued

Post Federal IACC meeting statement from Alison Singer, President of the Autism Science Foundation 

Autism Science Foundation website, April 28, 2026

Today, the federal Interagency Autism Coordinating Committee (IACC) met for the first time in 2 years. I agreed with many things that IACC committee members said. Autism is a crisis. We need better care, better access to care, better supports, better services, and better research. Our kids with profound autism need medical help. I agree with formalizing the use of the term “profound autism” as a “whole of government” term. The Autism Science Foundation has advocated for this for years. Wandering has always been recognized as an important issue at the IACC. Studying co-occurring medical conditions is also critical because autism often does not occur in isolation; many autistic people also experience additional health conditions that can strongly affect daily functioning, quality of life, and support needs. 

But this committee is created by law, to do a specific and important job. That job, as per the Autism CARES Act, is to “develop and annually update a strategic plan for the conduct of, and support for, autism spectrum disorder research”; not to, as IACC chair Dr. Sylvia Fogel stated today, “take the lived experience and urgent concerns of the community and translate them into policy for HHS to consider.” While that goal is laudable, by law, the committee must develop a research plan with action steps for how to get the research done. That is why scientists who do research have always served on this committee; because they are able to help translate the goals into actions. So, while I agree with the goals the committee members outlined, the committee needs to move beyond describing the symptoms and challenges of autism and actually write a research plan to accomplish these goals, as the law requires. 

Profound Autism:

I have fought for many years to create a separate category for profound autism to clearly distinguish people with autism who have the highest support needs so that we can properly plan to meet those needs. I served on the Lancet Commission, which published the first definition of profound autism, and am the senior author on the Delphi study that Dr. Fogel referenced today. IQ measures were included in both the Lancet and Delphi definitions of profound autism because IQ serves as a proxy for people who need extensive help with daily living, who need supervision to ensure safety, who have limited independence in adulthood, and who need long-term caregiving and support. The Delphi study included over 130 participants, and over two-thirds (68%) agreed that IQ should be included in the definition of profound autism. There was discussion of what the IQ cut-off should be, but there was clear agreement that it should be included. 

The IACC’s new definition of profound autism excludes IQ measures, stripping the term “profound autism” of the severe cognitive impairment that defines this population. In fact, based on the CDC study that Dr. Fogel cited today (Hughes et al, https://autismsciencefoundation.org/wp-content/uploads/2023/04/CDC-Profound-Autism-Statistics_ASF-Copy.pdf), 42.7% of people who met criteria for profound autism, met it solely on the basis of having an IQ under 50. 

That paper reports that among those classified as having profound autism:

• 42.7% qualified by IQ < 50 only
• 38.1% qualified by nonverbal/minimally verbal only
• 19.3% qualified by both IQ < 50 and nonverbal/minimally verbal

Similarly, the argument that IQ be excluded because it is too “resource intensive” is “ unreliable” and requires “motor planning”, calls for increased investment in better measurement tools, not exclusion of individuals with the most profound needs. 

Excluding IQ does not serve the interests of the profound autism community; it serves only the interests of a very small subpopulation of people who support facilitated communication, like Spelling to Communicate (S2C). Many proponents of S2C, several of whom serve on the federal IACC, resist including IQ in the definition of profound autism because they believe IQ tests underestimate nonspeaking autistic people. A central S2C claim is that autistic people who appear severely impaired may actually have high intelligence. The problem is that S2C has never been validated empirically. Dozens of studies have discredited facilitated communication, and no study has documented independent authorship under controlled conditions. There is concern that facilitated communication hijacks the authentic voices of profoundly autistic people, replacing them with the views of the facilitators. We need much more validation evidence before we accept that S2C is reliable. That is why the Autism Science Foundation has called for additional research on S2C.

Continued

Concurrent with this discussion, Judy Woodruff's series "Disability Reframed" presented a piece they had been preparing for some time, most likely not connected to the timing of the IACC's meeting. Much like last year's piece on Sheltered Workshops, the biases in this piece are apparent and disappointing to people on the severe end of the spectrum. No one from the National Council on Severe Autism, Profound Autism Alliance, or the Autism Science Foundation appears in the presentation. Only one autism parent was chosen to speak, rebutted by two "acknowledged experts" from the other side.

Nonetheless, mea culpa. It is difficult trying to present this newsletter every week without my own biases in favor of caring for our most vulnerable becoming obvious.

New focus on autism fuels debate over splitting the spectrum

By Judy Woodruff, Mary Fecteau, and Layla Quran, PBS Newshour, April 27, 2026

Last year, U.S. Health Secretary Robert F. Kennedy Jr. thrust autism into the national spotlight, calling the developmental disability an epidemic and vowing to investigate what he characterized as its environmental causes.

His speech and the reaction to it struck a nerve in the autism community and reignited debate about whether the autism spectrum is too broad and whether those with the highest needs are being left out of the conversation.

Judy Woodruff and producer Mary Fecteau have this story. It's part of our series Disability Reframed.

Read the article and watch the ten-minute video presentation here

Opinion: Profound Autism Is Difficult Enough Without This Debunked Method

By Amy S.F. Lutz, The New York Times, May 1, 2026

As the mother of a profoundly autistic son, now 27, I have wished for so many miracles over the years: that Jonah was not really as cognitively impaired as he appeared; that one of the countless treatments we tried would be transformative; that he would one day go to college, pursue a meaningful career and do everything parents want their children to do. So I understand the allure of facilitated communication and similar methods, which promise to grant those wishes with a simple letter board or keyboard.

Facilitated Communication, or F.C., is an intervention in which profoundly autistic individuals spell messages with the physical support of a nondisabled facilitator, who generally provides direct touch to the speller’s hand, wrist, elbow or shoulder. There are variants of F.C., such as Spelling to Communicate and the Rapid Prompting Method, in which the facilitator typically holds a letter board and offers prompts. Grouped together, these methods are often referred to as “spelling.”

Such facilitation, proponents claim, unlocks hidden literacy inside people previously considered severely cognitively impaired. In 2021, Robert F. Kennedy Jr. interviewed the father of a speller who wrote a book with his son. Discussing his takeaways from the book, Mr. Kennedy says the son “learned to do calculus in essentially a day.” According to “The Telepathy Tapes,” a popular podcast that first aired in 2024, there are spellers who can read their facilitators’ minds.

Here’s the thing about F.C., though: The science doesn’t back it up.

There are augmentative and alternative communication methods that work for many nonverbal or minimally verbal individuals: simple forms of sign language, various digital applications and the Picture Exchange Communication System — which employs small cards with images or icons primarily to convey requests. But communication produced by F.C. and its counterparts isn’t autonomous; it’s influenced by facilitators.

Continued

Dingell reintroduces HCBS Access Act to reduce Medicaid wait lists   

By Liza Berger, McKnight's Home Care, May 1, 2026

Rep. Debbie Dingell (D-MI) on Thursday reintroduced two bills designed to increase access to Medicaid home-and community-based services and bolster the direct care workforce. They are the HCBS Access Act and Long-Term Care Workforce Support Act.

The HCBS Access Act, which she previously introduced in 2023, aims to reduce wait lists for Medicaid HCBS through increased funding for HCBS and the federal Medicaid match. Rep. Jan Schakowsky (D-IL) co-sponsored the bill.

“At a time when Medicaid is facing unprecedented, historic cuts, it’s more important than ever that we prioritize home and community-based services,” Dingell said in a statement. “This is the less expensive option for both families and the federal government, but the people who don’t want us to improve the system are the corporations profiting while Americans struggle. This legislation will provide much-needed investment in our care workforce, making it easier for those who need care to get it, and supporting the caregivers doing this crucial work.”

Also, Thursday, Dingell reintroduced the Long-Term Care Workforce Support Act. The legislation strives to increase the number and compensation of direct care professionals many of whom live in poverty. It is projected that by 2031, 9.3 million direct care professionals — who include personal care aides, home health aides and others — will be required to meet the caregiving demands of older adults and people with disabilities.

The legislation seeks to accomplish the following:

• Increase the number of direct care professionals, including in rural communities; 
• Provide pathways to enter and be supported in the workforce for women, people of color and people with disabilities; 
• Grow compensation for direct care professionals to reduce vacancies and turnover; 
• Ensure that the direct care professionals are treated with respect, provided with a safe working environment, protected from exploitation, and provided fair compensation; 
• Improve access and quality of long-term care for families; 
• Document the need for long-term care, identify effective recruitment and training strategies, and promote practices that help retain direct care professionals. 
• Strengthen the direct care professional workforce to support the estimated 53 million unpaid family caregivers who are providing complex services to their loved ones in the home and across long-term care settings. 

Read the full article here

The Trump Administration Aims to Penalize Disabled Adults Who Live With Their Families

By Eli Hager, ProPublica, April 28, 2026

Even a glance at Shy’tyra Burton’s life reveals her need for the sort of federal government assistance that helps disabled Americans stay in their homes. Born two months prematurely into a poor family in Philadelphia, unable to breathe or swallow without tubes and largely confined to medical facilities until age 4, Burton was diagnosed with a litany of developmental and intellectual disabilities that left her with an IQ below 70.

She persevered and graduated from a high school special education program, then attempted community college. But she struggled to grasp basic tasks and information. She couldn’t get hired, including at McDonald’s. After multiple medical and psychological evaluations and a hearing before a judge, the federal government approved her for the Supplemental Security Income program, which provides a basic income to those with severe disabilities and to indigent older people.

For Burton, now 22, the $994 monthly benefit is lifesaving but not enough to completely support herself on her own. So, like many SSI recipients, she has continued to live with her father, who makes around $2,000 a month as a Philadelphia sanitation worker.

Now, President Donald Trump’s administration is poised to penalize people like Burton simply for living in the same home as their families, according to four federal officials, internal emails and a federal regulatory listing. The administration is working on a rule change that would deduct the value of a disabled adult’s bedroom from their SSI allotment, even if the family members they live with are poor enough to qualify for food stamps. This would mean slashing the benefits of some of the most low-income SSI recipients by up to a third — about $330 a month in Burton’s case — or ending their support altogether.

The effort to cut SSI for families who also rely on food stamps, also known as the Supplemental Nutrition Assistance Program, or SNAP, was initiated by top White House and Department of Government Efficiency officials last year, multiple Social Security officials said. It marks a second attempt by the Trump administration to quietly but dramatically downsize disability benefit programs overseen by the Social Security Administration, despite those programs’ strict eligibility standards and minimal instances of fraud. White House Budget Director Russell Vought and Social Security Commissioner Frank Bisignano abandoned a different proposed regulation involving disability payments last year after ProPublica and other news outlets reported on the harm that the plan would cause to hundreds of thousands of largely blue-collar workers in red states. (The disability programs are administered by the Social Security Administration but separate from the retirement program for which the agency is named. The Trump administration has promised not to cut Social Security retirement payments.)

The likely SSI cut will affect not just younger adults with disabilities such as Down syndrome and severe autism who are still living at home with their low-income parents, but also older people with health or financial problems who have had to move in with their adult children on tight budgets. All told, as many as 400,000 poor and disabled people and indigent older people across the United States could have their support cut or eliminated, according to a ProPublica analysis of actuarial figures from the Social Security Administration.

Continued

Last week, we reported that the Paragon Health Institute was one of the main sources of the current U.S. health policy and and the cuts to Medicaid featured in the One Big Beautiful Bill Act. This week, CMS Administrator and former TV host Dr. Oz appeared before the Paragon's panel, to listen to and reflect upon their views.

Here is the latest release of their policies, and how they believe we can further improve the Medicaid system:

Medicaid Waste, Fraud, and Abuse: Why CMS’s Improper Payment Rate Can’t Be Trusted

By Chris Medrano and Brian Blase, Paragon Health Institute, April 27, 2026

According to the most recent improper payment report from the Centers for Medicare and Medicaid Services (CMS), the official improper payment estimate for Medicaid is $37.4 billion annually, or 6.12 percent of all Medicaid payments. Some states are pointing to a low CMS improper payment rate as evidence that waste, fraud, and abuse are not a major problem in their state programs. This argument is flawed because the program used to produce this estimate—the Payment Error Rate Measurement (PERM) program—is not designed to measure fraud and contains major gaps that make it misleading.

PERM is a statistical compliance measurement tool required under federal law, while fraud enforcement is carried out through a separate system of audits, investigations, and prosecutions by federal and state entities. These systems serve different purposes and rely on different methodologies, but are often conflated in policy discussions.

The improper payment estimate is crude and does not capture the amount of waste, fraud, and abuse in Medicaid. Most of it is not counted in the improper payment methodology. Moreover, the current improper payment rate is essentially meaningless because of significant gaps in its methodology regarding eligibility and managed care. Given these limitations, PERM is not a good proxy for Medicaid misspending. It is a narrow, lagged audit of a subset of administrative errors.

While the best way to reduce waste, fraud, and abuse is to reform the programs and address perverse incentives at their core, policymakers should also take steps to accurately identify and reduce improper payments. If CMS holds states accountable for improper payments, states will take steps to reduce them, which in turn will reduce waste, fraud, and abuse. But if the federal government continues to use a flawed program that signals that improper payments are low, states will use these numbers as a reason not to invest in program integrity.

Waste, Fraud, Abuse, and Improper Payments Defined

Below are definitions of waste, fraud, abuse, and improper payments. These terms often overlap but are defined and enforced differently under the law.

Fraud

Medicaid regulations define fraud as “an intentional deception or misrepresentation made by a person with the knowledge that the deception could result in some unauthorized benefit to himself or some other person,” including “any act that constitutes fraud under applicable Federal or State law.” The critical element is intent. Without intent, there is no fraud. Federal fraud statutes reflect this understanding.

Because fraud requires the finding of intent, it is harder to prove than mere improper payments, which can include honest mistakes by either the payor or the payee.

Waste

Waste has no formal regulatory definition in Medicaid. There are no unique anti-waste statutes, nor does the government seek to track “waste” in a separate way. The Government Accountability Office (GAO) defines waste as “when individuals or organizations spend government resources carelessly, extravagantly, or without purpose.” In Medicaid, inordinately high spending on some services might be considered a form of waste even if it is not fraudulent. For example, the Wall Street Journal recently reported that one applied behavioral analysis center in Indiana was billing “$640 an hour for routine therapy,” which was “more than 10 times higher than the nation’s average.” As the center’s founder stated, her company “complied with Indiana’s rules and the state never objected to her prices.” If the center complied with the law, these payments would not be considered fraudulent or improper. After all, the center was providing a service and properly billing for it. They could, however, be considered wasteful, because such extravagant reimbursements reflect the government’s carelessness. The founder herself acknowledged such carelessness, saying, “I don’t think Indiana really had any oversight, or not much.”

Abuse

Abuse is defined in regulation as “provider practices that are inconsistent with sound fiscal, business, or medical practices, and result in an unnecessary cost to the Medicaid program, or in reimbursement for services that are not medically necessary or that fail to meet professionally recognized standards for health care.” Abuse also encompasses “beneficiary practices that result in unnecessary cost to the Medicaid program.” Regulations require a state agency to refer suspected abuse to fraud control units or conduct a full investigation before referring it to the appropriate law enforcement agency.

Improper Payments

The term improper payment is defined in statute as “any payment that should not have been made or that was made in an incorrect amount under statutory, contractual, administrative, or other legally applicable requirements,” including payments made without sufficient documentation to determine propriety. Improper payments also include payments to ineligible recipients, payments for ineligible goods or services, duplicative payments, payments for goods or services not received (unless authorized by law), and payments that fail to account for applicable credits or discounts.

This definition is broad enough to capture some waste, fraud, and abuse, but too narrow to capture the full scope of those problems. For example, the excessive reimbursements in Indiana mentioned above would not count as improper payments, because the practice followed the law.

Importantly, improper payments are identified through administrative review—not adjudication—and therefore do not establish wrongdoing. Therefore, an improper payment does not necessarily mean fraud, although it could include some fraudulent transactions.

To address improper payments in Medicaid specifically, the Social Security Act limits federal Medicaid funding by disallowing reimbursement for the portion of a state’s erroneous payments that exceeds a 3 percent error rate. In 2020, GAO noted CMS had not used this authority “for decades.” If CMS were to use this authority, it would encourage states to take program integrity measures more seriously.

Continued

However...

Trump’s Medicaid fraud crackdown may sound sensible, but it could harm Americans who require long-term care

By Marc Cohen, Alison Barkoff, and Jane Tavares, News-Times, April 29, 2026,

Mehmet Oz, the Centers for Medicare & Medicaid Services administrator, is ordering all states to step up their efforts to crack down on Medicaid fraud.

His April 21, 2026, announcement expanded on the Trump administration’s related enforcement actions, such as withholding Medicaid funds from Minnesota and threatening to do that for New York, California and Maine.

The Trump administration says there’s a big problem with fraud tied to government-funded care delivered in a person’s home or in the community, officially known as home and community-based services, along with nonmedical transportation, behavioral health and new or high billing providers.

The agency Oz leads is now asking states to immediately “revalidate” providers they claim are “high risk.” That is, states are supposed to require providers to prove that they remain eligible to participate in Medicaid and bill the program. The providers primarily offer at-home care, transportation, behavioral health and other services.

Related legislative initiatives, sponsored by Republicans, are also pending in Congress.

We are health services researchers who study the development and growth of the Medicaid home and community-based services program. One of us (Barkoff) previously served in the role of administrator and assistant secretary for aging of the Administration for Community Living.

We strongly believe that it is sensible and necessary for the government to take steps to prevent, root out and punish Medicaid fraud. But we are mindful that the government’s anti-fraud strategies and tactics could unnecessarily disrupt the very services that people depend on day to day.

We aren’t alone. Many researchers, advocates and policy experts are alarmed by this White House policy.

What’s at stake

All told, Medicaid provides health insurance coverage for about 75 million low-income Americans, including many who are at least 65 years old.

More than 5 million Americans benefit from government-funded home care, which is aimed at keeping low-income people with disabilities and frail older people living in their own homes and communities. Medicaid pays for most home care, covering nearly two-thirds of all such spending in 2023.

When home care works well, people become less likely to have to move into nursing homes or other assisted living facilities. If a home care aide doesn’t show up, the consequences are immediate and can be dire.

An older adult may be unable to get out of bed. A person with disabilities may miss meals or medications. A family caregiver may have to take time off without notifying their employer in advance and lose wages.

That’s why the federal government’s actions – particularly those targeting services provided in a person’s home or community – could endanger millions of people.

Exaggerating the scope of Medicaid fraud

In our view, proposals to overhaul Medicaid’s enforcement methods should be grounded in strong and objective data. Yet much of the argument for structural reform relies on anecdotal examples, isolated cases and select audit findings without broader context.

One of the more egregious cases perpetrated by providers was a home care agency in Pennsylvania that billed fraudulent claims between 2020-2023 totaling US$1.8 million. Another was the Minnesota provider penalized in 2025 after billing for services not delivered.

But those infractions do not justify characterizing an entire category of services that helps tens of millions of Americans remain in their homes as rife with fraud and in need of dramatic changes.

By contrast, as we explained in Health Affairs ForeFront in March 2026, federal oversight bodies – including the Centers for Medicare & Medicaid Services, the Government Accountability Office and the Health and Human Services’ inspector general – produce systematic, data-driven analyses.

These sources consistently caution against equating improper payments with fraud and emphasize targeted approaches to program integrity.

The government designated some 6% of the annual payments by Medicaid as improper payments between 2022-2025, which were worth about $37 billion. Yet, more than 3 in 4 improper payments resulted from insufficient documentation, which usually doesn’t indicate fraud or abuse.

What’s more, Medicaid fraud is regularly subject to enforcement actions. In 2025, Medicaid fraud control units reported 1,185 convictions for fraud nationwide, and combined recoveries from criminal and civil cases totaled about $2 billion.

Read the full article here

Massachusetts - Bipartisan support grows for our budget amendments to save Wrentham and Hogan Centers

By David Kassel, the COFAR Blog, April 27, 2026

As the state House of Representatives begins debate today on the Fiscal Year 2027 state budget, we are gaining bipartisan support for our proposed amendments asserting a right of persons with intellectual and developmental disabilities (I/DD) to placements at the Wrentham and Hogan Intermediate Care Facilities (ICFs).

This is a right that not only aligns with federal law, but is consistent with the state’s policy of encouraging “self-direction” among clients in planning and choosing their services.

When it comes to Wrentham and Hogan, not only does the Department of Developmental Services (DDS) not inform disabled individuals and their families of the existence of those facilities, but the Department implies they don’t have a right to placements there.

Wrentham and Hogan are the last two remaining ICFs for persons with I/DD in Massachusetts, and we are concerned that the centers are heading toward closure.

As of today, 12 legislators have indicated their support for Amendment 695, which states that people with I/DD, who have been found to be eligible for ICF-level care, have a right to placement in an ICF residential setting.

A second amendment, which has also gathered the same cosponsors (Amendment 699), requires DDS to report on its efforts to inform families of all residential choices available for care, including ICF care. And a third amendment (Amendment 703) states that residents of ICFs cannot be involuntarily discharged from those facilities.

The cosponsors so far consist of six Democrats and six Republicans, including Republican Representative Marcus Vaughn, the principal sponsor of each of the amendments. Vaughn represents a district that includes the Wrentham Developmental Center.

Continued

Fifty deaths, few consequences: Inside Minnesota’s group home industry

By Ellie Roth, Jennifer Lu and Christopher Peak, MPR NEws, April 27, 2026

Ryan Riggs died alone by a chain link fence in the backyard of the group home that was paid to take care of him.

Disabled by a traumatic brain injury after crashing his motorcycle in 2024, the 44-year-old needed more help than his family could handle. His wife, Julie, moved him to a site run by Fortunate Homes in Brooklyn Center, believing it was the best place for him.

About six months later, Ryan Riggs went missing from Fortunate Homes. As the temperature dropped to 45 degrees on a September night last year, the group home’s staff and police couldn’t find him. Twenty-nine hours after he disappeared, his body was discovered behind the facility’s detached garage. Rigor mortis had set in.

A state investigator concluded Fortunate Homes neglected Ryan Riggs’ needs. The Department of Health determined the vulnerable man should never have been allowed to leave the house unsupervised and that staffers did not review their own surveillance video until the day after he disappeared.

Ryan Riggs’ death and the facility’s neglect devastated his family. For the state’s fast-growing group home industry, it was part of a troubling pattern.

MPR News and its investigative unit APM Reports found at least 50 residents in Minnesota group homes have died since late 2022 under circumstances serious enough to trigger state maltreatment investigations. In 19 of those cases, state investigators concluded the homes had neglected those vulnerable people.

Yet the group homes faced only minimal consequences. State law caps fines on the homes at $5,000 for each case of substantiated maltreatment. In Ryan Riggs’ case, Fortunate Homes was initially fined $1,000 — less than two days’ worth of the more than $20,000 the business received monthly to take care of him, according to his medical records.

In other instances, MPR News and APM Reports found the state issued a $5,000 fine for neglect when staff at group homes let a resident drink himself to death, didn’t administer a resident’s life-saving medication for 15 days, and didn’t stop a resident from overdosing twice in a single day.

“That’s a lot of deaths. I’m frankly in shock that this isn’t known,” said Sue Abderholden, a longtime advocate for Minnesotans with mental health struggles. “There needs to be more happening, including shutting down a facility if they really can’t make adjustments in order to keep people safe. Slapping on a fine is not going to make sure people are safe in the future.”

Since 2021, the department has ordered the revocation of two group homes’ licenses following maltreatment investigations into the deaths of residents. In one of those cases, it later backed down after the group home appealed.

Read the full article here

North Carolina - People with disabilities ask NC legislators for funding to support community living 

By Lynn Bonner, News from the States, April 29, 2026

People with intellectual and developmental disabilities and their families stressed to North Carolina legislators the importance of helping the thousands of people waiting for assistance through Medicaid. 

More than 20,000 people were waiting for what’s called a Medicaid Innovations Waiver at the end of last year, according to the state Department of Health and Human Services. That’s up from about 18,500 in mid-2024. 

Speakers emphasized their reliance on the waiver, which pays for the direct care workers who help them live independently. 

Kay McMillan, 31, graduated from N.C. State University, runs a small nonprofit, and lives in a townhouse with roommates. She uses a wheelchair and made a statement at a Wednesday news conference using a computer program. 

“Medicaid does not just support my life. It makes my life possible,” she said. “Without it, I do not just lose modest services. I lose my independence, and you would be sentencing me to a nursing home where I could not continue to contribute to my community and continue to reach my potential.”

Kay’s mother, Sandy McMillan, said she’d do anything to help her daughter. 

“But I cannot be her entire system of support,” Sandy McMillan said. “Medicaid cuts would force family members to become full-time care givers. And while our love is infinite, our bodies are not.”

People sit on the list for years, and some die waiting to move to the top. 

Some who make it off the waiting list find it hard to secure the help they need because there’s a shortage of direct support workers.

Continued

Maryland - When “Leave No One Behind” doesn’t match reality (Commentary)

By Linda Orleans, Maryland Matters, April 27, 2026

I voted for Wes Moore because I believed in his promise to leave no one behind. He still uses that slogan often, but that is not what many people in the high-needs disability and medically complex communities are experiencing. While he recently signed the 2026–2027 Maryland budget at a public event, smiling for photos, many of us cried.

This budget includes roughly $127 million in reductions to disability services in state funding. Because many of these services rely on federal Medicaid matching funds, the total impact exceeds $250 million, according to reporting by the Capital News Service. This funding has supported daily care, safety and essential services for people with high-needs disabilities and complex medical conditions.

While the governor and lawmakers continue to praise the budget on social media and in the press, families like mine, caring for individuals with disabilities and complex medical needs, have been trying to get basic answers about what it means for the care our loved ones depend on every day. Those questions remain unanswered, despite repeated attempts to get clarity.

For families who depend on round-the-clock caregiving that extends across a lifetime, that uncertainty shapes whether we can hire and keep trained staff, attend certain programs, maintain consistent care and keep the supports that allow our loved ones to live safely in the community.

The workforce that provides these services is also facing anticipated pay reductions, the extent of which remains unclear. An already limited pool of providers is now shrinking as qualified professionals leave the field due to impending wage cuts and uncertainty around them. There is no clear, accessible information about how these changes will be implemented in the coming months, what they will mean in practice for staying in the community, or how the supports people rely on will be sustained.

When I reached out to legislators, I was told these cuts were necessary to preserve matching federal funding. I understand the importance of maintaining those funds. But even after asking directly, I and many others still have not seen a clear explanation of why this level of reduction was required, how those calculations were applied, or what these changes will mean in practice for rates, hours and staffing—changes we already know will weaken the supports families depend on.

Some people assume that if families have the means, they can find a way to pay privately. That is not how high-needs disability and medical services function.

The supports my daughter, and thousands of others, depend on are not something we can recreate on our own. They rely on a workforce that is already stretched thin and a system that holds that care together. When that system becomes unstable, there are not enough trained people or appropriate programs to meet the need, even for those who could afford to pay privately.

Families like mine understand that budgets are complex and that tradeoffs exist. But when decisions affect the most fundamental aspects of daily life, such as the ability to communicate, to stay safe, or to participate in the community, we need to understand how those decisions were made and what they will mean in practice.

If our governor and legislators are going to say that no one will be left behind, that commitment must include the families who depend on these supports the most. It also must include clear communication, meaningful engagement and answers that allow people to plan for the care their loved ones need.

Leaving no one behind also means not leaving the workforce behind. Maryland cannot afford to lose these essential workers.

Right now, “leave no one behind” is what we hear, while emails are ignored, calls are not returned, and families are left trying to plan care without answers. Slogans do not sustain care.

Read the commentary here

Iowa - Family sues state over Medicaid payment cuts for ‘medically necessary services’

By Clark Kaufmann, Iowa Capitol Dispatch, April 28, 2026

A Polk County couple is suing the Iowa Department of Health and Human Services, alleging reduced payments for Medicaid-funded services are now so low they’ve made it almost impossible for them to secure care for their adult son.

The lawsuit, filed by Monty and Linda Kaufman on behalf of their 32-year-old son, Cameron Kaufman, seeks judicial review of a DHHS decision on a rate reduction affecting the payments for the home- and community-based services used by Cameron Kaufman.

Although the lawsuit discloses nothing about the nature of the services or the size of the rate reduction, it asserts that the family appealed the reduction, but the managed care organization upheld its decision on the matter. The dispute then went before an administrative law judge, who allegedly reversed the managed care organization’s decision and ruled in favor of the Kaufmans subject to a final decision by DHHS.

Despite the judge’s findings in the case, the lawsuit claims, DHHS then issued a final agency decision on March 6, 2026, upholding the MCO’s rate reduction.

The family claims they rely on Medicaid’s home- and community-based waiver program to pay for the services that enable Cameron to remain safe at home. According to the lawsuit, the family has “experienced ongoing and significant difficulty locating and maintaining qualified service providers,” and that “the reduced reimbursement rate further limits provider availability.”

The lawsuit alleges DHHS’ decision is unsupported by substantial evidence and that the evidence in the case demonstrates that “the reduced rate prevents adequate access to care.”

The lawsuit seeks judicial review of the matter, claiming DHHS’ decision on the rate reduction “contradicts the purpose of home- and community-based service waiver programs” that pay for healthcare services rendered in the home rather than in institutions.

Continued

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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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