May 30, 2025

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.

VOR's Board of Directors cordially invites you to attend:

VOR's 2025 Annual Meeting

Sunday, June 8, 2025

3 pm ET / 2 pm Central / 1 pm Mountain / Noon Pacific

on Zoom

Every year in June, VOR's Board of Directors holds an open meeting to introduce ourselves to members and give them a chance to interact and share their concerns, challenges, and achievements.

We will discuss the health of the organization, discuss our financial picture, review our legislative agenda and ongoing advocacy campaigns, and present our goals for the years ahead. We will present this year's VOICE Award, and hold an open forum of state reports and issues that face our families and loved ones.

This meeting is open to all VOR members

State Reports Forum

What is happening in your state?

We ask our members to prepare written reports we can post on our website and to make oral presentations at this meeting in order to keep others up to date about the big picture involving I/DD and autism issues, challenges, and victories in their states.

Please submit your written reports to hdwyervor@gmail.com

House Approves Deep Cuts To Medicaid Threatening Disability Services, Advocates Say

by Michelle Diament, Disability Scoop, May 23, 2025

The U.S. House of Representatives approved billions in cuts to Medicaid that advocates warn would undermine the nation’s already fragile system of services and supports for people with disabilities.

Republicans in the House pushed through a bill designed to follow through on President Donald Trump’s domestic agenda early Thursday by a vote of 215 to 214 after intense negotiations.

The legislation known as the “One Big Beautiful Bill Act,” which now heads to the Senate, would impose work requirements on many Medicaid beneficiaries and mandates that states check individuals’ eligibility for the program more frequently, among other changes.

The Congressional Budget Office estimated earlier this week that the changes called for in the bill would lead to $698 billion less in federal Medicaid subsidies between 2026 and 2034. Savings from Medicaid and other areas would help pay for an extension of tax cuts from Trump’s first term and support other administration priorities.

Republicans said the measure will end “waste, fraud and abuse” in Medicaid.

“Today, the House has passed generational, nation-shaping legislation that reduces spending, permanently lowers taxes for families and job creators, secures the border, unleashes American energy dominance, restores peace through strength, and makes government work more efficiently and effectively for all Americans,” House Speaker Mike Johnson, R-La., said. He indicated that the measure “strengthens our essential programs like Medicaid for the people who need it the most.”

Disability advocates, however, say that’s not the case.

Continued

Opinion: Medicaid Cuts Put Services for Vulnerable People at Grave Risk

By Barbara Merrill, Common Dreams, May 22, 2025

With the House passing their budget reconciliation bill with a vote of 215-214, hundreds of billions in proposed cuts to Medicaid have moved one step closer toward very real, harmful consequences, including for people with intellectual and developmental disabilities, or I/DD, whose health, safety, and quality of life depend on Medicaid.

Medicaid doesn’t just provide healthcare. It is the single largest payer for the community-based services people with I/DD need to live, work, and thrive in our communities—services that range from assistance with intimate activities of daily living and personal hygiene, to employment supports to find and maintain a job, to providing residential and in-home supports to support independent living.

If lawmakers approve the proposed cuts to Medicaid, state budgets will be unable to absorb the financial shock. Even if targeted to other groups like those made eligible for services through Medicaid expansion, programs that enable people with I/DD to meaningfully participate and thrive in our society will be the first to go. We know because home- and community-based services for people with I/DD are optional services, meaning they are some of the last services to be funded when there’s a state funding shortfall.

We saw this following the Great Recession when, following cuts to federal funding, every single state made cuts to services and 36 states specifically made cuts to services for people with I/DD. 

Divesting from Medicaid will be devastating to providers of I/DD services who are already struggling immensely due to insufficient Medicaid reimbursement rates that haven’t kept pace with inflation. As a direct result, 90% of community providers report moderate to severe staffing shortages as workers seek out higher-paying jobs in entry-level retail, convenience, and fast food industries. Without sufficient staffing, 69% of community providers report they’re unable to take new referrals for people with I/DD who need and qualify for services.

Medicaid cuts by another name in the form of increased red tape eligibility requirements or work reporting requirements also threaten people with disabilities, who may lose coverage due to barriers completing onerous reporting requirements, even if they are provided an exemption. Such requirements also threaten to further exacerbate the direct support workforce crisis, as 49% of direct care workers rely on public assistance programs themselves, and approximately one-third work part-time or with inconsistent schedules—two job features that are generally incompatible with work reporting requirements. If direct support professionals, the very backbone of disability services, are unable to meet burdensome reporting requirements, it will only force them to find more stable, higher-paying jobs outside of care work.

If lawmakers truly care about boosting economies, they would invest in, not divest from Medicaid, because these services actually play a critical yet often invisible role in state economies. 

Continued

Opinion: It’s not just Medicaid: Why the Republicans’ bill would likely force Medicare cuts, too

By Steve Benen, MSNBC, May 22, 2025

As the fight over the Republicans’ so-called One Big Beautiful Bill Act unfolded, much of the focus turned to Medicaid, and for good reason. Despite Donald Trump’s promise not to cut the health care program, the GOP legislation would cut roughly $700 billion from Medicaid in the coming years, and with just hours remaining before the bill reached the floor, party leaders added new and punitive Medicaid provisions to shore up support from far-right members.

But as important as the future of Medicaid is, the legislation’s impact on Medicare matters, too.

If people were to dig into the 1,000-page bill to look for the provisions related to Medicare cuts, they won’t find them. But there’s a difference between the literal text of the legislation and the practical effects of the legislation.

In fact, as The Washington Post reported, the Congressional Budget Office found that the Republicans’ megabill would add so many trillions of dollars to the national debt, “it could force nearly $500 billion in cuts to Medicare” — with some cuts taking effect as early as next year. As the Post noted, the higher deficits would force budget officials “to mandate across-the-board spending cuts over that window that would hit the federal health insurance program for seniors and people with disabilities.”

When legislation significantly adds to the national debt, which already exceeds $36.2 trillion, it triggers ‘sequestration,’ or compulsory budgetary reductions. In that scenario, Medicare cuts would be capped at 4 percent annually, or $490 billion over 10 years, the CBO reported in response to a request from Rep. Brendan Boyle (Pennsylvania), the top Democrat on the Budget Committee.

Referencing Congress’ Pay-As-You-Go (“PAYGO”) Act, Boyle said in a written statement, “This Republican budget bill is one of the most expensive — and dangerous — bills Congress has seen in decades. The nonpartisan CBO makes it clear: The deficit will explode so badly it will trigger automatic cuts, including over half a trillion dollars from Medicare.”

The Pennsylvania Democrat added, “This is what Republicans do — pay for massive tax breaks for billionaires by going after programs families rely on the most: Medicaid, food assistance, and now Medicare. It’s reckless, dishonest, and deeply harmful to the middle class.”

Continued

GOP rails against 'blatantly false' Dem claims about Medicaid reform in Trump's 'big, beautiful bill'

By Deirdre Haevey, Fox News, May 29, 2025

House Republicans are celebrating Medicaid reform in the One Big Beautiful Bill Act, which the House GOP says eliminates waste, fraud and abuse to deliver for Americans who need coverage most. 

Meanwhile, Democrats have railed against possible Medicaid cuts since President Donald Trump was elected in November. Now that his "big, beautiful bill" has passed in the House of Representatives, Democrats are defining Medicaid cuts as a driving issue ahead of competitive midterm elections in 2026. 

Republicans say there is more to the story. 

"The One, Big Beautiful Bill puts Americans first. We're securing the border. We're protecting benefits for the most vulnerable. We are investing in American manufacturing. We're investing in our own energy production," Rep. Erin Houchin, R-Ind., told Fox News Digital in an exclusive interview. 

"The Democrats have been focusing on this specific line of attack that 13.7 million Americans are going to lose their health care, and that's just blatantly false."

The Congressional Budget Office (CBO), a nonpartisan analysis for the U.S. Congress, estimates that 8.6 million people in the United States will lose health insurance by 2034 through the One Big Beautiful Bill Act's Medicaid reform. 

CBO estimates that 13.7 million Americans will lose coverage by 2034, which also includes the 5 million Americans who were already set to lose coverage. A number of Democrats have already deployed the figure in campaign messages rejecting Trump's "big, beautiful bill" passing in the House.

"I don't trust the CBO score, nor should the American people, because it's been proven again and again to be wildly off," added Houchin, who served on three major committees leading budget markup, including the House Rules, Budget and Energy and Commerce committees. 

The One Big Beautiful Bill Act does not cut Medicaid for the most vulnerable, according to Houchin. Instead, she says targeting waste, fraud and abuse in the Medicaid program cuts benefits to illegal immigrants, those ineligible to receive benefits who are currently receiving benefits, duplicate enrollees in one or more states and those who are able-bodied but are choosing not to work. 

"If you have to think about the four things that we're doing in Medicaid to strengthen it, we're removing anybody that is illegal, ineligible or duplicate, and we're ensuring that able-bodied adults, on the expansion population, have a very modest work requirement, in exchange for receiving benefits. Those things are overwhelmingly supported by the American people, yet the Democrats continue to lie about what this bill is actually doing," Houchin said. 

Republicans say they are cleaning up the program to ensure working families and the most vulnerable Americans can rely on the program for generations to come. 

The One Big Beautiful Bill Act does not cut Medicaid for the most vulnerable, according to Houchin. Instead, she says targeting waste, fraud and abuse in the Medicaid program cuts benefits to illegal immigrants, those ineligible to receive benefits who are currently receiving benefits, duplicate enrollees in one or more states and those who are able-bodied but are choosing not to work. 

"If you have to think about the four things that we're doing in Medicaid to strengthen it, we're removing anybody that is illegal, ineligible or duplicate, and we're ensuring that able-bodied adults, on the expansion population, have a very modest work requirement, in exchange for receiving benefits. Those things are overwhelmingly supported by the American people, yet the Democrats continue to lie about what this bill is actually doing," Houchin said. 

Republicans say they are cleaning up the program to ensure working families and the most vulnerable Americans can rely on the program for generations to come. 

Read the full article here

Hawley stakes ground as chief GOP defender of Medicaid 

By Nathaniel Weixel, The Hill, May 28, 2025

Sen. Josh Hawley (R-Mo.) is staking out his spot as a populist defender of Medicaid in opposition to the steep cuts contained in the House-passed megabill to fund President Trump’s domestic agenda. 

The senior senator from Missouri — who as the state’s attorney general once signed on to a lawsuit seeking to overturn the Affordable Care Act — has made his position clear: He will not support a bill that cuts Medicaid benefits. 

Hawley has long warned his party against Medicaid cuts; the $800 billion question is whether other senators will join him. 

He joined with Sen. Ron Wyden (D-Ore.) during a marathon series of votes on the budget resolution in April to introduce an amendment that would have stripped the House’s directive to find $880 billion in savings. The amendment was not adopted, but Sens. Susan Collins (R-Maine) and Lisa Murkowski (R-Alaska) also voted for it. 

Earlier this month, Hawley wrote in a New York Times op-ed that slashing health care for the working poor “is both morally wrong and politically suicidal.” 

“Republicans need to open their eyes: Our voters support social insurance programs,” Hawley wrote. “More than that, our voters depend on those programs.” 

Hawley is adamant that Republicans take President Trump seriously when he says they should not touch Medicaid benefits and instead focus on “waste, fraud and abuse.” 

“We ought to just do what the president says,” Hawley said late last week, after the House passed its version of the bill. 

He cited concerns about the impact the House bill’s Medicaid provisions — most notably a freeze on provider taxes — would have on rural hospitals. 

Hawley also said he spoke with Trump, who reiterated his desire for Congress not to cut Medicaid benefits.

“His exact words were, ‘Don’t touch it, Josh.’ I said hey, we’re on the same page,” Hawley told reporters.

Read the full article here

Trump says autism ‘has to be artificially induced’ 

By Alex Gangitano, The Hill, May 22, 2025

President Trump said Thursday that autism must not occur naturally, citing figures inflating the spike in autism and suggesting the administration’s Make America Healthy Again (MAHA) Commission could provide answers.

“When you hear 10,000, it was 1 in 10,000, and now it’s 1 in 31 for autism, I think that’s just a terrible thing. It has to be something on the outside, has to be artificially induced, has to be,” Trump said at a MAHA Commission event. “And we will not allow our public health system to be captured by the very industries it’s supposed to oversee. So we’re demanding the answers, the public is demanding the answers and that’s why we’re here.”

He noted that the administration is phasing out eight of the most common artificial food dyes, after the Food and Drug Administration announced actions last month to phase out the use of petroleum-based food dyes in U.S. food products, citing concerns over potential health impacts on children.

The MAHA Commission event unveiled the group’s new report, which pointed to four key factors it says are hurting U.S. children: ultraprocessed foods, environmental chemicals, digital behavior and “overmedicalization.” The report identifies pesticides and other chemicals as potentially having harmful health impacts, but it stops short of recommending actions to limit them.

At the event, the president was sitting beside Health and Human Services Secretary Robert F. Kennedy Jr., who is a prominent vaccine skeptic and has also shared his debunked theories about a link between autism and vaccines.

Continued

Opinion: RFK Jr. is looking in the wrong place for autism’s cause

By Dylan Scott, VOX, May 30, 2025

Let’s start with one unambiguous fact: More children are diagnosed with autism today than in the early 1990s.

According to a sweeping 2000 analysis by the Centers for Disease Control and Prevention, a range of 2–7 per 1,000, or roughly 0.5 percent of US children, were diagnosed with autism in the 1990s. That figure has risen to 1 in 35 kids, or roughly 3 percent.

Autism is a complex disorder with a range of manifestations that has long defied simple explanations, and it’s unlikely that we will ever identify a single “cause” of autism.

But scientists have learned a lot in the past 50 years, including identifying some of the most important risk factors. They are not, as Kennedy suggests, out in our environment. They are written into our genetics. What appeared to be a massive increase in autism was actually a byproduct of better screening and more awareness.

“The way the HHS secretary has been walking about his plans, his goals, he starts out with this basic assumption that nothing worthwhile has been done,” Helen Tager-Flusberg, a psychologist at Boston University who has worked with and studied children with autism for years, said. “Genes play a significant role. We know now that autism runs in families… There is no single underlying factor. Looking for that holy grail is not the best approach.”

Continued

Opinion: New Jersey must find the will to stop abuse and neglect in our I/DD group homes

By Paul Aronsohn, The Daily Record, May 30, 2025

Paul Aronsohn currently serves as the NJ Ombdusman for Individuals with Intellectual or Developmental Disabilities and Their Families

Regarding "The group home system in NJ is flawed. See our yearlong investigation," NorthJersey.com, May 2025:

In October 2018, one of the leaders in New Jersey’s disability provider community referred to instances of abuse and neglect as “uncommon events.” Although only a few months in my current position, I was confused by the statement, because my experience was already telling me otherwise — that abuse and neglect were seemingly common and pervasive. Fast-forward a couple of years, and the situation seemed so dire that I felt compelled to include a thorough discussion in our office’s 2020 annual report — one that stated emphatically, “People may disagree about the prevalence of abuse or neglect, but there is absolutely no denying it exists.”

Since then, abuse and neglect have been a central topic in each of my office's annual reports. Why? Because abuse and neglect have been — and continue to be — a central focus of our day-to-day work. Physical abuse. Emotional abuse. Sexual abuse. Improper medicine administration. Improper food practices. Questionable visitation policies. Questionable house practices. Unexplained injuries. Unexplained deaths. Not a single day goes by without someone contacting us about an allegation of abuse and neglect. Sometimes it is about a new, terrible experience. Often it is about an ongoing situation.

As just one indicator of this deplorable reality, last year, our office website’s “How to Report Abuse & Neglect” section had 2,313 unique visitors — those visiting the section for the first time. In fact, during the 11 months last year that we tracked such metrics, at least one new person per day visited our site’s section on abuse and neglect.

Without question, abuse and neglect in state-licensed residential settings — for children as well as adults — have been one of the most concerning and most persistent challenges brought to our attention over the years. And one of the most heartbreaking and infuriating truths about this shameful reality is that relatively few people — working within the system — seem willing to acknowledge it, much less talk about it.

Granted, I fully recognize that providing supports and services for individuals with intellectual or developmental disabilities is not easy. Whether you are sitting in a government office making policy or working in a group home providing direct care, the responsibilities are challenging. The demands are great. Mistakes are sometimes made.

But let’s be clear: None of this is rocket science. Preventing abuse and neglect is not hard. We know the causes. We know the solutions. We just need the collective will to take the necessary steps and make the necessary changes.

Going forward, at a minimum, I offer the following three sets of recommendations:

Continued

Out of school and in prison in CT: Report finds special education needs were missed.  

By Emilia Otte, CT Mirror, via The Hartford Courant, May 24, 2025

For most of his life, Anthony struggled in school. In first grade, he was held back a year. By middle school, he’d been placed in an alternative school for children with problem behaviors. Then, at age 16, he was incarcerated after being charged with larceny and attempted assault.

It wasn’t until roughly two years into his stint at Manson Youth Institute in Cheshire that Anthony, whose real name is being withheld for privacy reasons, was identified as having a language and speech impairment.

And he isn’t the only one.

A report from the Center for Children’s Advocacy, slated to be released this October, found that local school districts repeatedly failed to recognize the learning difficulties and traumatic experiences of young people at an early age. That left them vulnerable to disengagement from school, ongoing discipline problems and eventual involvement with the criminal justice system, the report found.

CCA reviewed the special education records of 10 young men incarcerated at Manson — including Anthony — and found that most of them had experienced learning difficulties in elementary school. Yet it sometimes took years for them to be evaluated for special education services.

And while six of the 10 young people were eventually referred for special education services, most of them were already incarcerated by the time that happened.

“What jumps out so much from these stories … is how much could have been done for these kids at a much earlier age. Because we are losing them by sixth grade, if not earlier,” Sarah Eagan, CCA’s executive director, told the state General Assembly’s Juvenile Justice Policy and Oversight Committee during a presentation about the report last week.

Andrius Banevicius, public information officer for the Department of Correction, said in a statement to The Connecticut Mirror that most young people who come into a DOC facility have already been identified as special needs, and that there are “well established protocols and procedures to refer students to the special education process.”

“The dedicated educational professionals of the department’s Unified School District (USD) #1 are committed to providing a supportive and effective learning environment for all of their students, especially those with special education needs,” said Banevicius.

According to the report, all 10 of the young people whose records the agency reviewed were reading below grade level. Four of them were held back a grade. One was held back three times.

Andrea Spencer, an education consultant for CCA, said traumatic events “have a significant effect” on a child’s brain development. All of the young people were in some way affected by violence — ranging from experiencing child abuse to witnessing domestic violence or violence in the community. One was the victim of a gunshot.

Yet in eight of the 10 cases, there was no documentation in their education records about the difficulties they experienced. Eight of the 10 students also had notes in their records indicating that they had difficulties paying attention.

“It seems that nobody really made the connection between the backgrounds of trauma of these young men and the hypervigilance that comes with that,” Spencer said at the meeting.

She added that the behaviors children exhibited after experiencing trauma sometimes resemble ADHD. Language difficulties were also a common thread among the young men, which Spencer said was linked to “problem behavior.”

Other researchers have come to similar conclusions. A 2020 study published in the Journal of Child Psychology and Psychiatry found that young people with developmental language disorder were more than twice as likely to reoffend.

Spencer said that difficulties with reading reinforced a belief that these students couldn’t function in school settings. As they entered higher grades, where learning relies more on reading texts, they experience heightened stress.

Being expelled or suspended multiple times and being sent to an alternative school for children with behavioral problems were common stories for the young people whose records the agency reviewed.

Eight out of 10 were arrested before the start of high school. Four were incarcerated before ninth grade.

Falling ‘through the cracks‘

Even when special education needs were identified, the young men weren’t assured of getting the help they needed. According to the report, the special education services they received at Manson were minimal.

Spencer noted that the youths at the facility already had “significant educational deficits” in reading and other areas that were important in order for them to thrive in the community.

Last August, the federal Department of Justice reached a settlement with the Connecticut Department of Correction after a 2021 federal investigation found, among other things, that Manson Youth Institute was failing to adequately educate children with special education needs. Part of the settlement required the department to screen young men entering the facility for special education needs, create policies around reviewing and revising special education plans and document the services that the youths were receiving.

Read the full article here or here

Nebraskans with disabilities fear losing Medicaid services amid potential funding cuts

By Erin Sullivan, WOWT, First Alert 6 News, May 29, 2025

Many Nebraskans with disabilities are anxious about the future of Medicaid-funded services amid potential cuts.

Around $700 billion in Medicaid funding is on the chopping block through President Trump’s “One Big Beautiful Bill Act," which passed through the House earlier this month.

The multi-trillion-dollar tax cut and spending bill is now before the Senate, where it faces challenges and potential changes.

Colleen Rothe-Groleau of Weeping Water is the guardian of her brother, Scott. He started having seizures when he was just five years old.

“Finally, somebody said ‘what’s the reason that these seizures are coming so fast and they’re getting so bad?’” Colleen Rothe-Groleau said. Doctors discovered a cancerous tumor on the left side of Scott’s brain. Unfortunately, ten days after his surgery, he had a stroke and it left his whole right side paralyzed,” told Rothe-Groleau.

Rothe-Groleau said Scott’s seizures have also never stopped, leaving him multi-handicapped. He now lives in a Bellevue group home and attends a day program.

“Medicaid covers his day services; Medicaid covers his living services. Virtually every part of his care requires Medicaid,” Rothe-Groleau said.

With the House passing one of the largest Medicaid cuts in modern history, Rothe-Groleau is fearful Scott’s services are at risk.

“I don’t want to see him lose the care that he gets now, because this is by far the best place he’s ever been. The level of care that he receives is head and shoulders above anything else that I could possibly give him and he deserves that. He’s been through enough,” Rothe-Groleau said.

Starting in March, she wrote letters to Sens. Deb Fischer and Pete Ricketts, and Reps. Don Bacon and Mike Flood. She told Scott’s story and urged them to reconsider supporting Medicaid cuts.

“If they’re approving these votes for these huge cuts and slashes to Medicaid and the programs that run Medicaid, they are in effect telling us that Scott’s life and people like him don’t matter and that’s not okay,” Rothe-Groleau said.

All four lawmakers wrote back.

“For the most part, it was canned responses. ‘Thanks for talking to me. I’ll keep your opinions in mind when I decide to vote.’ It doesn’t feel like I was heard,” Rothe-Groleau said.

Representative Don Bacon said people with disabilities who have Medicaid will not lose their benefits.

“Bottom line is, anybody that earns Medicaid or is eligible for Medicaid will not be cut. We’ve protected people who rely on Medicaid,” Rep. Bacon said.

However, Rothe-Groleau isn’t convinced her brother’s services will be spared.

“That would be looking at the world through rose-colored glasses. That’s not going to happen,” she said.

Scott’s services are considered Home and Community Based Services. HCBS are optional for Nebraska to cover under Medicaid, according to Brad Meurrens, public policy director for Disability Rights Nebraska.

“They’re not mandatory and so we’re concerned the Home and Community Based Services would be the first to go, because it’s low-hanging fruit,” Meurrens said.

He said HCBS are not typically covered by private insurance or Medicare.

More than 40,000 people with disabilities were enrolled in Nebraska Medicaid last year, according to Nebraska’s Medicaid Division.

Read the full article here 

In New Hampshire, people with disabilities face challenges hiring the help they need

By William Skopworth, The New Hampshire Bulletin, May 27, 2025

Last time Jim Piet, who has cerebral palsy, needed to hire a new personal care assistant to help him complete daily tasks, it took four months.

Amid New Hampshire’s tight labor market and low Medicaid reimbursement rates, people with disabilities, like Piet, face challenges hiring the help they need. And for people with unique needs, this can be difficult, isolating, and exhausting.

‘Damn near impossible’

“I need help for everything,” Piet said.

Piet, who uses a motorized wheelchair, has a personal care assistant, or PCA, to help him get out of bed, shower, and get dressed, and to prepare meals and drive him places. Those everyday services, among others, are paid for through Medicaid.

Piet worked for 29 years, first with the University of New Hampshire’s Institute on Disability, then for New Hampshire’s vocational rehabilitation program as a public relations specialist. He also holds a bachelor’s degree from Southern New Hampshire University and a master’s degree from Springfield College. He lives in Concord with his wife, Pat, who also has cerebral palsy.

“Finding warm bodies is hard,” Pat Piet said. “Finding warm bodies that can actually do the job is nearly impossible.”

Cerebral palsy can manifest differently for different people. For example, Piet uses a wheelchair while his wife doesn’t. For some, cerebral palsy causes developmental delay and intellectual disability. For Piet, it’s just physical. That’s why he hires PCAs as opposed to direct support professionals, or DSPs, another common type of aide who, instead of simply assisting their client with tasks, also guides them, attempts to teach them how to do things for themself, and seeks to assist them with tasks they can’t do for cognitive or developmental reasons. The Piets said there’s a lot of overlap between the two professions.

“A lot of times, especially if we get someone who worked as a DSP, they’re used to being the one who prompts, the one who directs,” Pat Piet said. “They come in to help Jim and Jim’s just throwing out orders one after another. They do not know how to deal with that.”

“Most people are not used to working with someone with a master’s degree,” he added.

They said part of the challenge in finding aides is the job’s difficulty. It requires physical strength to lift clients out of bed, into wheelchairs, and throughout their homes, but Pat Piet noted it also requires “soft skills.”

“I think DSPs and PCAs are some of the most difficult jobs,” she said. “They almost require a degree in psychology. They require you to be able to read people, to be able to prompt someone effectively, to understand Jim is not someone with an intellectual disability, so it’s a different approach.”

Despite this, the jobs pay relatively low wages. Granite State Independent Living, one of the state’s largest agencies hiring DSPs and PCAs, has job postings with wages from $18 to $22 per hour. Those jobs do not require a high school diploma or nursing license.

He said they often get people incapable of doing the job or who “bring (their) own baggage.” Sometimes caretakers don’t act appropriately when he’s in the community, he said, and treat him like “a charity case.”

“I always cringe when people talk about how emotionally satisfying the job is,” Pat Piet said. “You want to enjoy going to work. You want to get something emotionally out of it. But I feel like when we advertise that, we tend to get people who are emotionally needy and are looking to the person they’re caring for to fill that gap. … This is a job. You get your emotional needs met from friends and family, not at your job.”

They also feel frustrated that people often ask why Pat can’t simply take care of Jim. They note that she has had a career of her own that has required her to go into the office at times he needs help. Jim also said he wants Pat to just be his wife and not rely on her constantly. Still she helps him with his tasks when they absolutely can’t find an aide.

All of these factors make recruiting and retaining good aides “damn near impossible,” Pat Piet said.

Read the full article here

'On borrowed time': State presents schedule for closing Hiram W. Davis Medical Center

By Bill Atkinson, Petersburg Progress-Index, May 22, 2025

The timeline for closing the Hiram W. Davis Medical Center by 2027 in Dinwiddie County has been made public, and its plans call for eventual moves of patients to either public or private facilities and an employee-relocation process the state hopes will limit layoffs. 

A final process for shuttering the 50-year-old 150-bed facility on the campus of Central State Hospital still must be approved by the General Assembly and governor next winter. A meeting May 21 of the state Joint Commission on Health Care (JCHC) provided the first opportunity for review of that timetable. 

There are currently 33 patients at the hospital, with three of them likely to be discharged by July. Of those remaining, half are expected to go to either the Southeast Virginia Training Center in Chesapeake, or into an intermediate-care facility or group home. 

As for the 152 staff members at the medical center, some of them will transfer to the new Central State Hospital currently under construction along with some of the medical-center services. Others will be offered positions at other DBHDS facilities or retire. 

[DBHDS Commissioner Dr. Nelson Smith] said DBHDS is spending $1.5 million to upgrade the Southeastern Virginia Training Center in Chesapeake to accommodate up to 15 of the existing Davis patients. Most of the patients eligible for transfer to Chesapeake are likely to move into care settings closer to their homes, but DBHDS expects at least five of them to opt for SEVTC. 

Smith estimated that two residences at SEVTC would have to be fixed up to accommodate the Davis transfers. 

The term “training center” is a misnomer, Smith said, because the center actually is made up of 15 five-bed living quarters, all under skilled care. 

“It’s more like a neighborhood,” Smith said. 

At one point, Virginia had five training centers, including one adjacent to Central State Hospital in Dinwiddie. All but Chesapeake were forced to close as part of a federal investigation into care at these centers. 

Read the full article here

Advocate: Medicaid was meant to be a lifeline. In Mississippi, it’s on life support.  

By Greta Kemp Martin, Mississippi Today, May 23, 2025

If Mississippi has taught me anything, it’s that federal policy rarely trickles down as promised. For people with disabilities, especially in our state, Medicaid isn’t a political talking point—it’s survival.

Medicaid pays for in-home support, daily nursing care, medications, equipment and community access. Without it, the alternative is often institutionalization, isolation or worse.

But under the Trump administration’s proposed budget, this vital program is facing devastating cuts. Medicaid is on the chopping block, and Mississippi is standing directly in the path of the blade.

Recently, I spoke with a mother in the Mississippi Delta whose son has a rare degenerative condition. He’s nonverbal, uses a wheelchair and needs help with every aspect of daily life. For the past three years, Medicaid has provided her a modest stipend to be his paid caregiver—allowing her to stay home, care for him full-time and keep him out of a facility 90 miles away.

“If they cut this program,” she told me, “I’ll have to go back to work. But no one else can care for him. What happens to him then?”

She already knows the answer: He’ll be institutionalized. Not because he needs to be — but because that’s the only option left when Medicaid collapses and the community-based care disappears.

The Kaiser Family Foundation ranks Mississippi as one of the states most vulnerable to federal Medicaid cuts. We rely on federal funds for nearly three-quarters of our Medicaid budget. Unlike wealthier states, we don’t have the cushion (or the political will) to fill the gap if that money disappears.

And it’s not just one program on the line. The Urban Institute outlines how slashing HHS funding will kneecap services that help disabled people live independently. That includes everything from personal care attendants to case managers to basic home health. Families as Allies of Mississippi and the Mississippi Coalition for Citizens with Disabilities have issued repeated warnings, but so far, the response from many of our lawmakers has been silence.

We’ve seen this film before. And we won’t like the ending: more people forced into institutions, more families pushed to the brink and more lives lost. 

What’s happening in Washington isn’t abstract. This is a direct threat to people in Mississippi, especially those with disabilities.

More than 700,000 Mississippians — about a quarter of the state’s population — rely on Medicaid or the federal Children’s Health Insurance Program, according to the Mississippi Division of Medicaid website.  Medicaid covers 1 in 3 Mississippians with disabilities. Medicaid provides not only health care, but also essential supports like personal care services, durable medical equipment and access to home and community-based services that allow people to live independently instead of being institutionalized.

The latest GOP proposals in Congress may avoid the most dramatic cuts for now, but they still set the stage for devastating consequences. Policies like work requirements and funding clawbacks are being framed as “moderate reforms,” but let’s be clear: they target the very people Mississippi’s system is already failing, including low-income families, disabled residents and rural communities with limited alternatives.

National experts at KFF warn that cuts of this scale could force states to reduce benefits, tighten eligibility or shift costs in ways that make care harder to access. Recent Axios reports say Medicaid work requirements could lead to hundreds of thousands losing coverage. This is not because people can’t work, but because navigating paperwork shouldn’t be a condition for staying alive.

As of this week, Mississippi’s delegation has been largely silent, but the health care system they claim to protect is already in crisis. If these policies move forward, they’ll be accelerating a slow-motion disaster. 

The question isn’t whether cuts are “technically moderate.” The question is: Who gets left behind and who’s counting on us not to notice?

Read the full article here

Opinion: Trump's 'Big Beautiful Bill' will hurt Ohioans who depend on Medicaid

By Pete Van Runkle, The Columbus Dispatch, May 20, 2025

Medicaid is a lifeline for Ohio seniors and people with disabilities.

It supports 44,000 skilled nursing facility residents, 50,000 individuals with intellectual and developmental disabilities, and 65,000 Ohioans receiving home and community-based care through programs such as PASSPORT. The One Big Beautiful Bill Act, passed by the U.S. House of Representatives, includes changes that would put Ohio’s Medicaid program at risk.

Now more than ever, Ohio’s most vulnerable residents are relying on elected leaders to ensure Medicaid can continue supporting high-quality care.

Senior and disability services providers depend heavily on Medicaid, yet funding has not kept pace with rising costs.

In Ohio, nearly two-thirds of seniors receiving care in a skilled nursing facility are on Medicaid. Providers serving individuals with intellectual and developmental disabilities rely entirely on Medicaid, as no other insurance covers these services.

Agencies offering home and community-based services for frail elderly Ohioans face similar challenges. Without adequate funding, providers struggle to retain staff and remain open, contributing to a growing care shortage across the state.

The One Big Beautiful Bill Act jeopardizes Ohioans

A key component of Ohio’s Medicaid financing is the provider tax system.

Under Ohio’s pending state budget bill, provider taxes would bring in about $11 billion annually by drawing down vital federal matching funds. It is a legitimate tax paid by hospitals, managed care plans, skilled nursing facilities and intermediate care facilities for individuals with intellectual disabilities that allows the state to save general taxpayer dollars for other uses.

Unfortunately, the One Big Beautiful Bill Act threatens to eliminate or freeze provider taxes, jeopardizing a major source of Medicaid funding in Ohio.

Two huge concerns stand out. First, the federal legislation would eliminate Ohio’s managed care tax as currently structured, which generates $2.5 billion in revenue each year. This revenue is a critical component of Ohio’s Medicaid budget. Losing it would jeopardize desperately needed Medicaid services for frail elderly and disabled Ohioans.

Second, freezing provider tax levels — while less harmful than cutting them — would prevent Ohio from raising rates on provider sectors that have not reached the current federal cap. Losing this flexibility could limit the state’s ability to sustain Medicaid services in the years ahead. 

Even more concerning is that the freeze only grandfathers in state provider tax increases enacted before the federal bill becomes law.

Ohio’s Medicaid budget for the next two years depends on a planned increase to the hospital provider tax that will generate more than $3 billion in annual funding for Medicaid services. If the federal bill passes first or the grandfathering provision is weakened, the result would be a massive shortfall in Medicaid funding, leading to dramatic cuts to care for our most vulnerable citizens.

The consequences would be felt immediately and locally

In rural areas across Ohio, health care facilities are not only care providers but also major employers and economic drivers. Families rely on nearby options to stay close to loved ones, and Medicaid funding cuts would limit providers’ ability to hire staff, invest in services and meet the growing demand for care.

Ohio took important steps in the 2023 biennial budget to improve Medicaid reimbursement rates and stabilize the aging and disability services workforce. But these gains are fragile. If Ohio loses billions in Medicaid funding, they would be undone and thousands of vulnerable Ohioans would be at risk of losing care. 

Continued

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H.R.1950 - Rep. Mark Pocan (D-WI)

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. 

H.R.869 - Rep. Susie Lee (D-NV)

To require full funding of part A of title I of the Elementary and Secondary Education Act of 1965 and the Individuals with Disabilities Education Act.

H.R.1509 - Rep. Lori Trahan (D-MA)

Accelerating Kids' Access to Care ActTo 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.

S.752 - Sen. Chuck Grassley (R-IA)

Accelerating Kids' Access to Care Act - A bill to amend title XIX of the Social Security Act to streamline enrollment under the Medicaid program of certain providers across State lines.

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)

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



H.R.2598 - Rep Jared Huffman (D-CA)

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

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.  

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) amd sheltered workshops for indiviiduals with I/DD and autism.