August 22, 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.

Personal Stories

VOR is about families. Families like yours. Families like mine. Every family's story is unique. And every one of our families have shared paths, hopes, challenges, moments of doubt and moments of joy.

Personal stories are the lifeblood of advocacy.

We would like to invite our readers to share their stories with us, that we may share them with our community.

Many of our Board members and long-time members have shared their stories several times over the years. We would like to hear from people who haven't spoken. In the next few months, we hope to share your stories in different formats, from our print newsletter The VOR Voice to our annual fundraising appeals.

Please share your story with us, at info@vor.net or at hdwyervor@gmail.com

There is one story that keeps resonating with our families:

"What will happen when..."

Here, again is that story, retold by yet another generation of parents.

These Parents Don't Only Fear the Death of their Child. They Fear Dying First.

By Madeline Mitchell, USA Today, August 15, 2025

Karen and Jeff Groff have read the same children’s books to their son, Danny, for nearly four decades.

At 6 feet, 1 inch tall, 39-year-old Danny Groff enjoys sitting between his parents on their couch in Upper Arlington, Ohio, holding a stuffed Bert Muppet toy. He leans in toward his mother as she reads "Curious George Rides a Bike," and breaks into a smile when she whispers, "George got curious."

Danny Groff has Lennox-Gastaut syndrome, a rare and severe type of epilepsy that typically develops in early childhood. About 50,000 people in the United States and 1 million people worldwide have the condition, according to the LGS Foundation. Every time a seizure happens, brain damage occurs that can lead to learning difficulties and other lifelong disabilities. Danny Groff has seizures daily, and Karen Groff said he has the developmental abilities of a 2-year-old.

He also has Type 1 diabetes, which means he can only stay part time at his adult day program. The staff there can't distribute the insulin he needs to live. He spends mornings at the program with his peers, and the rest of his time at home with his parents.

The Groffs know it can’t always be this way, but their son can't talk about his future. Now, both 66 and retired educators, they are planning for two outcomes, which Karen Groff said are equally scary. 

“Our worst nightmare is that we lose him first,” she said. “And our worst nightmare is that we go first.”

When parents and caregivers die or otherwise can no longer provide care to their loved one − whether they be a person with a disability or someone else who needs care − that responsibility inevitably gets passed down to another friend or family member. Even if the person being cared for moves to a facility with caregiving staff, someone still needs to help with that move and keep tabs on the person's care and finances. Caregiving is becoming increasingly common in the United States, where a new study from AARP found nearly 1 in 4 adults are caregivers.

The Groffs are prearranging three funerals: their own and Danny's.

“It’s a little overwhelming," Karen Groff said. "I can’t die.”

Read the full article here

Aging parents want homes for their adult children with disabilities  

By Tom Hanson, Eye On Keloland, August 20,2025

It is often up to family members to care for adults with intellectual and developmental disabilities. For aging parents who can no longer give the care their adult children deserve, this can be an emotional roller coaster. But a Sioux Falls couple believes they have come across a solution.

Michael and Harriet Stuart have cared for their son Aaron his entire life.

Born with autism, Aaron’s speech and social skills are limited. He wears headphones because he is sensitive to sound. One of Aaron’s happy places is the kitchen. Michael guides him through the recipe for muffins.

“Now you pour a little bit at a time, stop, stop, good job, put this here, you mix that up, wonderful, great job! Michael tells his son as they mix ingredients.

You can hear Aaron whispering as he works. Michael says he’s often reciting the lines of an entire movie. This is a common behavior. It’s called scripting and can serve to reduce anxiety for people like Aaron.

Every day, Michael, a former teacher, creates a schedule. That’s because structure is important to Aaron.

“You did great, I am so proud of you. Good job,” Michael tells Aaron.

Aaron likes to be productive and has worked at a supermarket bakery and at Chili’s Restaurant. He enjoys repetitive tasks.

“I can’t tell you exactly what he thinks,” said Mom Harriet. “Because I can’t get into his head and he can’t express, but he likes to be busy.”

The Stuarts are in their 70s and Harriet says they are concerned about what will happen to Aaron when they are gone.

“Living in fear, if something happens to us, what would happen to him, so when he was 3, I didn’t think about that. Now he’s 33, I think about it constantly. And I know I’m not alone, there are other families,” said Harriet.

They love their son and want to prepare him for life without them.

“It’s time he stayed away from us a bit and gotten used to the fact that he’s not always going to be with us and we don’t always be there for him, said Michael.

“In a nutshell, I want to know where he’s living when I leave this earth,” said Harriet.

They’ve explored finding a suitable home for Aaron, but Michael says there’s nothing available in Sioux Falls and Aaron has been on a waiting list for three years.

The Stuarts started looking around for solutions, and they believe they’ve found one that the state of Michigan has embraced. An example, a group of 3 or 4 parents will split the cost and buy a home for their disabled children.

“The parents wind up with a guarantee that their loved one cannot be thrown out;

They wind up with a designed home that is perfect for that individual,” said Michael.

One of the 20 certified CSPs or Community Service Providers in South Dakota would staff the home. For example, Black Hills Works, Volunteers of America, and Dakotabilities.

Michael says the CSPs benefit because they are no longer responsible for buying and maintaining a home.

The Stuarts are hoping other parents will join them to launch the program. They also urge people to reach out to their state lawmakers in support of the plan.

Read the full article here

VOR Podcasts!

Episode 3 - Part 2

Joanne St. Amand

"What Happened When NJ Closed

Two of its State-Operated

Intermediate Care Facilities"

Click here to view it on YouTube

VOR's Casey Henry and Brenna Redfearn continue their new series!

Click here for Episode 1

Click here for Episode 2

Click here for Episode 3 - Part 1

More podcasts coming soon!

Opinion: Trump is cutting Medicaid based on a flawed study 

By Stephen B. Soumerai and Gordon Moore, The Hill, August 21, 2025

Our country is poised to take health coverage away from millions of low-income Americans largely based on the findings of a flawed and flagrantly misleading study.

President Trump’s budget reconciliation bill recently produced the largest cut to Medicaid health insurance in its 60-year history.

Claiming to reduce “fraud and abuse,” it will cut essential medical services for at least 12 million low-income people through unachievable work requirements, unaffordable out-of-pocket costs and inaccessible hospital and nursing home care.

This will likely have the unintended effect of causing thousands of excess deaths and hundreds of thousands of preventable hospitalizations among low-income people who will lose insurance coverage.

What has gone largely unreported during the debate and passage of the cut is that an untrustworthy study of Medicaid that asserted there was no improvement in physical health for those with Medicaid coverage.

This study has been cited by the Trump administration, Republican House leaders and the media as proof that taking away health care coverage will, in defiance of common sense, not damage the health of Americans.

But this 2013 study in the New England Journal of Medicine — the Oregon Health Insurance Experiment — misled rather than informed policymakers. The methods used were flawed. Just for starters, more than two-thirds of the study group were not, in fact, on Medicaid. 

Bluntly, the findings of this study are useless for any scientific or policy purposes, especially to justify such major changes to Medicaid.

The study purported to show that Oregon’s expansion of its Medicaid program as part of the Affordable Care Act had failed to improve the physical health of its recipients. That conclusion was pounced on by ideologues attempting to derail the program’s expansion.

The Oregon study’s results have been touted by the Heritage Foundation, whose Project 2025 included deep cuts in Medicaid funding. The Paragon Health Institute, an influential policy research center led by former Trump officials, also relied on the Oregon study to conclude, falsely, that health insurance has almost no effect on physiological health like blood pressure and diabetes control.

The Economist, Forbes, The Wall Street Journal and many other publications, have cited this same study as a rationale for cuts to Medicaid.


But not only is the study not what its ideological proponents say it is, it is not what the authors of the study claim it to be — the only randomized controlled trial of Medicaid insurance.

First, it is clearly not a randomized controlled study of anything. The researchers used a lottery to determine who would and would not be offered Medicaid from a wait list in an urban area of Oregon. 

In theory, this might have worked. But information buried in the study’s supplementary appendix shows that an unacceptably high 70 percent of those “randomly” assigned to the “offer” of Medicaid were ineligible for Medicaid because their income was too high or they did not properly fill out the required paperwork.

Despite this, throughout the study’s results, the authors described the 70 percent who never got Medicaid as “Medicaid recipients.” This misleading assertion is akin to a drug trial in which 7 out of 10 people randomized to the study drug never actually received the drug.

The overwhelming evidence shows that Medicaid coverage does matter for the poor and chronically ill. A convincing landmark study showed that life-threatening illnesses worsened after Medicaid was withdrawn from medically indigent people in California.

Reduced drug insurance coverage among those covered by Medicaid with chronic diseases such as diabetes, heart disease and mental illness led to the discontinuation of life-saving medications.

This resulted in an increase in costly emergency hospitalizations and permanent institutionalizations in nursing homes  — both at far greater costs than the miniscule savings to Medicaid.

Faulty science can lead to long-lasting harms for public health. This flawed study continues to be cited in thousands of media articles, frequently to promote or justify cuts in Medicaid coverage for millions of vulnerable citizens. In fact, it is now a go-to rationale for politicians who want to take health care away from the most vulnerable.

The human toll of this cut, based in very large part on bad information, is going to be widespread and deep. This debate is not anywhere near over. We as a society, and as medical professionals, are going to be revisiting this potential disaster as it unfolds.

Read the full editorial here

Opinion: If Medicaid cuts are justified, why delay them?

By The Editorial Staff of The Columbian, August 16, 2025

During a wide-ranging interview with The Columbian’s Editorial Board this week, Rep. Marie Gluesenkamp Perez brought up a salient — and underreported — point.

When asked about the One Big Beautiful Bill Act passed by Congress and signed by President Donald Trump this summer, Perez said:

“[M]ost of the Medicaid cuts don’t happen until 2027. If you’re proud of what you’re doing, why are you hiding it?”

It is a direct question that [supporters of the bill] should have to answer.

Most of the tax cuts in the bill will take effect this year. So will the elimination of tax credits for the purchase of an electric vehicle and for energy-efficient home improvements, along with other provisions.

But when it comes to Medicaid, changes are being delayed. As CNBC explains:

“Medicaid, which provides health insurance to those with low incomes, will introduce new work requirement rules effective Dec. 31, 2026. Beneficiaries ages 19 to 64 who apply for Medicaid or coverage through an Affordable Care Act expansion group will have to work at least 80 hours a month to be eligible for benefits. Qualifying circumstances, such as certain medical conditions or dependent children ages 14 and under, may exempt beneficiaries from the work requirement. States will also need to recertify beneficiaries’ eligibility every six months, rather than the current annual review policy.”

Meanwhile, the federal government also is reducing payments to states for Medicaid coverage, which will further tighten health care benefits. According to the nonpartisan Congressional Budget Office, approximately 10 million Americans will lose health insurance because of provisions in the bill.

As professor Gerard Anderson of Johns Hopkins University said: “Most Americans on Medicaid are located in geographic areas where there is no school, there are no jobs, and there is nothing to volunteer for — especially not 80 or more hours a month. Others may be sufficiently incapacitated — even temporarily — that they can’t fulfill the requirement, thus losing their health care coverage due to illness.”

But [those who voted for the bill] have delayed those provisions until after the 2026 midterm elections, hoping that voters will be unaware of the coming changes.

Perez said she already is hearing from rural hospitals that fear they will be unable to remain open. Industry experts say more than 100 rural hospitals in the United States have closed in the past decade, and the One Big Beautiful Bill Act is expected to exacerbate that shortage of care.

While speaking with the Editorial Board, Perez repeatedly focused on the needs of rural residents in her district, but it was her pointed critique of the One Big Beautiful Bill Act that most resonated.

If Medicaid cuts are the right thing to do, they should not be delayed until after the election.   

Read the full, unexpurgated version of the editorial here

When Do the One Big Beautiful Bill Act’s Health Care Provisions Go Into Effect?

By Natasha Murphy and Brian Keyser, The Center for American Progress, August 18, 2025

President Donald Trump signed the One Big Beautiful Bill Act (OBBBA) into law on July 4, 2025. Framed by congressional Republicans as a tool for deficit reduction, the law dramatically slashes federal health care programs. Through making deep cuts to Medicaid, the Affordable Care Act (ACA) marketplaces, and Medicare, the OBBBA will threaten coverage, increase health care costs, and impose new barriers to care for millions of Americans.

The law includes the largest Medicaid cuts in the program’s history, achieved in part through instituting work reporting requirements; fails to extend the ACA’s enhanced premium tax credits beyond 2025; and effectively blocks a policy change that would make it easier for low-income Medicare enrollees to afford their care. In so doing, the OBBBA is poised to reverse decades of progress in expanding access to health care.

This fact sheet outlines effective dates specific to the OBBBA’s key health care provisions, offering a road map of when major policy changes will begin. Some provisions took effect immediately, while others will roll out gradually. Understanding the timeline of these changes is essential for the policymakers and advocates working to preserve coverage and minimize care disruptions across Medicaid, the ACA marketplaces, and Medicare.

Continued (with partial fact sheet)

The full version of the fact sheet is available here

States Consider All Options to Counter Medicaid Cuts, Changes

By Kelley Griffin, The National Conference of State Legislators (NCSL), August 18, 2025

Complicated, threatened, bloated, decimated, scary, confusing, insufficient.

Those are just some of the words legislators and staff used to describe the state of their Medicaid budgets heading into massive cuts and policy changes included in the Trump administration’s HR 1, the tax and spending bill enacted on July 4.

“This is some intense language,” NCSL’s Kathryn Costanza told an overflow audience during a session on Medicaid at the Legislative Summit in Boston. But it’s not surprising, she says.

“The complexity of the program, its relevance and importance to state legislatures, is uncontestable,” says Costanza, a principal with NCSL’s Health Program. Medicaid covers 1 in 5 people nationwide, 38% of all children, including half of children with special health care needs, and more than a third of adults with disabilities, she says, adding that it funds 42% of births and 54% of all long-term care.

The panelists from four states acknowledged they are up against it as they plan for nearly $1 trillion in estimated federal funding cuts to Medicaid over the next decade, along with significant changes in eligibility, including work requirements states will need to administer. The measure also prohibits states from continuing arrangements with health care providers, including hospitals, to collect taxes that offset Medicaid costs. All of this as other pressures on the system mount—higher costs for health care labor, prescription drugs and long-term care.

Short on Options

“We don’t have a tremendous number of options,” says Oklahoma Sen. John Haste, the vice chair of the Senate Appropriations Committee. “We have about 1.3 million people on Medicaid within the state, so about 25% of our population. From a state standpoint, it’s $2.5 billion of state dollars we’re putting in.”

He notes that a $1-a-pack state cigarette tax has generated about $98 million toward Medicaid costs.

Virginia is grappling with lost revenue due to federal job cuts since many of its residents are federal workers, making it harder to prepare for loss of Medicaid support, says April Kees, staff director of the Virginia Senate Finance and Appropriation Committee. It also highlights what’s true in any state: Medicaid costs rise when the economy weakens because more people become eligible.

“We’re already seeing 11,000 jobs being affected,” Kees says. Normally, the strong federal workforce is a buffer during downturns, but it’s different now. With 70% of state revenue coming from individual income taxes, “we’re going to have to really watch that a little more closely,” she says.

Virginia also has some surplus funds that could insulate the state somewhat from the impact of costly changes to Medicaid. But even before the effects of HR 1 are factored in, the state has seen growing numbers of people joining Medicaid. 

“K12 (education) and Medicaid is 50% of our general fund budget. So we have to really watch those two areas very closely,” Kees says. 

Nevada Sen. Fabian Doñate, who chairs the Senate Health and Human Services Committee, says his tourism-dependent state is seeing a drop-off in revenue this year and a related increase in people relying on Medicaid. 

“It’s going to be hard for us to catch up to some of the revenue challenges that we’re facing,” Doñate says. And Nevada only recently enacted the provider tax on hospitals that generates $800 million annually. The funds are used to draw down money from the federal government for states to use on the Medicaid program, such as to increase hospital payments.

“So now that’s also at risk” from HR 1, Doñate says. He says since the state has no income tax, it will be hard-pressed to generate enough revenue to offset losses of federal funds, and legislators will face tough decisions about who will be served—and who won’t.

“I would argue that it’s going to become a life-and-death situation for many individuals,” Doñate says. “And as a state that already has a higher uninsured rate, it’s unfortunate that we’re being put in this situation, because there is no end-all solution to protect the people that are about to be kicked off (Medicaid).”

Continued

New Trump Policies Targeting Homelessness Threaten the Rights of People with Disabilities

By Susan J. Popkin, Samantha Batko, Lizzy Ferrara. Urban Institute, August 18, 2025

Between President Trump urging people experiencing homelessness to leave as part of federal takeover of Washington, DC, and an executive order directing agencies to prioritize mental health and substance abuse services before other forms of assistance, the administration’s stance on people experiencing homelessness is clear: leave, accept treatment, or go to jail.

This policy shift, coupled with sweeping cuts to other social services, is a major departure from long-standing civil rights protections for disabled people—threatening their access to community-based care and increasing the risk of institutionalization, which can severely compromise their well-being. Already, disabled people face multiple intersecting crises when accessing adequate care: 

• About one in four adults in the US have a disability, which makes them more likely to have a lower income and experience discrimination in the private housing market; 18 million people with a disability are eligible for federal housing assistance but are not receiving it.

• Over a quarter of a million people endure unsheltered homelessness on any given night, and an additional half of a million are in shelters. People experiencing homelessness are about twice as likely as other Americans to have a disability, and the share of people experiencing homelessness with a disability is growing.

• Older adults, who are more likely to have disabilities, increasingly cannot afford housing and are the fastest-growing age group experiencing homelessness. In 2021, nearly 11.2 million older adults spent more than half their income on housing.

The new federal actions targeting homelessness, combined with the earlier funding cuts to social programs, raise serious questions about whether disabled people’s rights will be recognized or if disabled people will be pushed into institutions under the guise of public safety and cost savings. To ensure disabled people’s right to adequate care, local communities and service systems will need to protect and fund access to services that enable people with disabilities to live independently—services that are already too scarce and too difficult to access.

Disabled people and people experiencing homelessness want care, but there isn’t enough available

People experiencing homelessness are not homeless because they refuse to access treatment. There simply aren’t enough treatment resources available. Untreated substance use or mental health conditions aren’t the result of individual failure. They are the product of deliberate policy choices.

In the Urban Institute’s Los Angeles County Women’s Needs Assessment, 46 percent of women received mental health treatment services but still experienced homelessness, and an additional 24 percent said they wanted to participate in mental health services but did not receive them. Similarly, one in three women who wanted substance use services did not receive those services. Elsewhere, supportive housing staff members have described their programs as filling a gap caused by the lack of psychiatric and inpatient hospitals, skilled nursing facilities, and in-home caregiving support.

These existing gaps in treatment mirror those faced by disabled people and are likely to get worse as new federal legislation takes hold. In a 1999 decision, the US Supreme Court affirmed that people with disabilities have the right to receive services in a setting appropriate to their needs.

Centers for Independent Living have long provided supports and structures for disabled adults to be fully included within their communities, emphasizing the dignity that all people deserve. But the 2025 budget reconciliation act made significant cuts to community-based services, reducing the number of appropriate settings available and exacerbating treatment challenges for older adults, people with disabilities, and their families.

Medicaid is the largest source of funding for home- and community-based supportive services, and the $990 billion in Medicaid cuts could deny services to large numbers of disabled people. At the same time, the US Department of Health and Human Services eliminated the Administration for Community Living (ACL), which housed Centers for Independent Living services and provided funding to states for services to help older adults and disabled people live independently.

In 2022, the ACL provided more than 261 million meals to older adults, assistance such as respite care to more than 1.5 million family caregivers, and independent living services to nearly 250,000 people with disabilities. Thousands of ACL civil servants have been laid off, and it is unclear whether or how these critical programs will continue amid the department’s reorganization. This leaves older adults and disabled people—including children—to face the real risk of being forced into nursing homes and other types of institutions.

Institutionalization will not solve homelessness or provide disability care

Forcing people into treatment, involuntarily institutionalizing people, or putting them in jail will not solve homelessness or people’s disability-related challenges.

Institutional settings—whether nursing homes, psychiatric facilities, or correctional facilities—strip people of critical rights. Institutionalized individuals are also excluded from federal census counts, which has serious consequences, leading to underestimates of the size of the disabled population, reduced federal resources, and lack of representation in Congress.

Further, many nursing homes that rely on Medicaid funding are likely to close, especially in rural areas, leaving people who need care few choices in their communities. Families will have to make decisions about providing care at home—which could mean loss of income for caregivers and economic hardship for the household—or placing their loved ones in faraway facilities. At the same time, immigrant detention and deportation operations, including the rollback of protected status, threatens to decimate the home and nursing home care workforce, as more than a quarter of direct care workers are immigrants. This workforce was already too small and struggling to keep up, and these policy changes risk pushing an already fragile system past its breaking point.

Expanding institutionalization while cutting community supports ignores both evidence and lived experience. Disabled people, including those experiencing homelessness, are not refusing care; they are being denied access to it.

Continued

~~~~~~~~~~~~~~~~~~~~~~

Related Article:

A Look at the New Executive Order and the Intersection of Homelessness and Mental Illness

Authors: Heather Saunders and Robin Rudowitz, KFF, August 15, 2025

President Trump recently signed an executive order on homelessness, mental health, and substance use that leverages federal funding priorities and other administrative tools to encourage states to ban public drug use, remove unhoused people from public spaces, and broaden civil commitment laws to permit involuntary psychiatric civil commitments in more circumstances. It also instructs the Department of Housing and Urban Development (HUD) to end funding for programs that use the “Housing First” approach–which provides immediate housing without preconditions such as sobriety or mandatory mental health treatment—and instead to fund programs that require individuals to participate in treatment prior to receiving housing assistance. The executive order comes about one year after the 2024 Supreme Court decision (Grants Pass v. Johnson), which makes it easier for law enforcement to ticket, fine, or arrest people sleeping on public property. Approximately 220 local governments have since passed enforcement measures targeting homelessness.

Weeks after signing the executive order, President Trump announced plans to deploy the National Guard and assume control of D.C. police to clear homeless encampments in the city and address crime. While he did not specify where unhoused people would be relocated, he posted that they would be given “places to stay, but far from the capital.” These actions align with his campaign statements advocating for relocation of unhoused individuals to “tent cities” and expanding involuntary psychiatric commitments, including his campaign remarks that people with serious mental illnesses (SMI) should be brought “back to mental institutions, where they belong.”

Taken together, these policies represent a departure from decades of court-backed deinstitutionalization, which emphasized voluntary, community-based care in less restrictive settings. They also work together by pairing easier state expansion of law- enforcement authority related to homelessness with federal incentives to encourage states to broaden civil commitment laws and psychiatric institutional care.

This brief describes the new executive order, examines the intersection of homelessness and mental illness, reviews the history of the deinstitutionalization movement, and discusses specialized treatment services for people with SMI.

Continued

Labor Department Wants To Remove Pay, Overtime Protections For Disability Caregivers

By Michelle Diament, Disability Scoop, August 21, 2025

More than a decade after federal officials started requiring minimum wage and overtime pay for most in-home care workers assisting people with disabilities, the Trump administration wants to do away with the protections.

The U.S. Department of Labor is seeking to rescind a 2013 regulation and revert to a standard dating back to the 1970s. Under the plan, those who provide in-home assistance would be treated as “companions” — much like babysitters — without many of the rights enjoyed by other types of employees.

“Because the department is concerned that the 2013 regulations might not reflect the best interpretation of the (Fair Labor Standards Act) and might discourage essential companionship services by making these services more expensive, the department is proposing to return to the 1975 regulations,” the Labor Department said in its new proposed rule.

Doing so, would reduce the cost of home care services and expand access, the agency said.

The proposal indicates that the Obama-era rule led to increased costs for home care providers without resulting in greater earnings for workers. At the same time, the Labor Department said that turnover in the industry remains “stubbornly high” and growth has slowed since the rule was finalized.

“The department has tentatively determined that the 2013 rule has had negative effects on the ground which are hindering consumer access to home- and community-based services,” the proposal states.

If the Labor Department finalizes the proposed change, the agency said that as many as 3.7 million home care workers employed by third-party agencies could become exempt from existing minimum wage and overtime requirements, though some would likely remain covered under state laws. Another 1.5 million independent providers who are currently exempt could see their responsibilities increase, the agency said.

According to the proposal, the average rate for home health and personal care aides was $16.12 per hour in 2023, so it’s unlikely that eliminating minimum wage protections would affect worker earnings, but the loss of overtime pay might.

The proposal is facing pushback, however, from groups representing in-home caregivers and those they serve.

The Paraprofessional Healthcare Institute, which advocates for the direct-care workforce, said that the proposed rule would lead to increased turnover, higher costs for recruitment and reduced quality of care and will “further destabilize an already undervalued workforce.”

“This proposed rule would worsen the existing workforce crisis by making home care jobs even less stable, with lower wages and fewer overtime protections,” said Tory Cross, associate director of federal policy and government relations at Caring Across Generations, an organization advocating for caregivers and people who rely on them. “That instability translates into higher job turnover and fewer people entering the field as direct care workers which ultimately reduces quality and access to care for people with disabilities.”

Officials with the American Network of Community Options and Resources, or ANCOR, which represents disability service providers across the nation, said they had no comment when asked about the proposal.

The proposed rule is up for public comment through Sept. 2.

Read the full article here

Ed Department Preparing To Cut Millions In Special Education Funding, Advocates Warn

By Michelle Diament, Disability Scoop, August 18, 2025

Disability advocates say that the U.S. Department of Education could cancel hundreds of grants made under the Individuals with Disabilities Education Act in the coming weeks.

The awards in question are provided under IDEA Part D and fund everything from technical assistance and parent resource centers to personnel preparation for special educators. Collectively, the grants aimed at improving the education of students with disabilities could be worth hundreds of millions of dollars.

“No Part D grantee has heard for sure, or has seen anything in writing, (but) there is credible information flowing that points to (the Office of Special Education Programs’) plan to cancel hundreds of grants in a few weeks,” said Robyn Linscott, director of education and family policy at The Arc. “We are hearing that these grants likely are those funded directly out of Part D National Activities. We believe they were flagged through an AI scan that pinpoints grants that have the DEI terms this administration is targeting for termination, as well as all/most of the (technical assistance) centers that OSEP funds.”

Many organizations supported under Part D are in the middle of a five-year funding cycle, but have not received award notifications for the coming year, including some with a renewal date next month. And, advocates say that some grantees have been told by their project officer to prepare to close.

Now advocates are sounding the alarm. Both the Consortium for Constituents with Disabilities, a coalition of national disability organizations, and the Council for Exceptional Children, a professional organization focused on special education, wrote to their members to alert them of the possible cuts.

Meanwhile, more than 150 representatives of federally funded Parent Training and Information Centers, Community Parent Resource Centers and Parent Technical Assistance Centers signed a letter sent to members of Congress urging them to push back on any plans to terminate Part D grants.

“It has come to our attention that the U.S. Department of Education is considering the cancellation of all OSEP grants to CPRCs, PTACs and related Technical Assistance Centers in the coming weeks,” the letter states. “We respectfully urge you to ensure that the administration and the Department of Education uphold Congress’s appropriations and release the designated funding. Eliminating these programs would not only undermine congressional intent but also jeopardize the essential services that families across the nation rely upon.”

The Education Department did not respond to a request for comment about the status of the Part D grants.

Continued

Washington - Slashed funding, tighter restrictions could hurt hundreds of thousands WA residents on Medicaid

By Ruby de Luna, KUOW News, August 21, 2025

Every parent’s goal for their children is to teach them life skills that help them launch into adulthood — but that gets complicated when a child has a disability.

Many of those families rely on Medicaid, a federal program, for support. Now, one Bellevue family is worried about what the Trump administration’s recent safety net cutbacks could mean for their son.

The Medicaid waiver program provides support for nearly every aspect of Nate Nemhauser’s life — whether he’s getting ready for school, taking part in enrichment activities, or getting ready for his work shift at Pagliacci Pizza.

Nate is 21 years old. He has autism and an intellectual disability. Communication and concentration are difficult for him.

His job coach, Megan Cymanski, joins him at work to help him clock in and stay on task: folding pizza boxes and stocking the drink cooler.

Nate started work in November. His mother, Rachel Nemhauser, says he started with just one two-hour shift a week. Then, it became two shifts. Now it’s up to three.

“He has this rich, busy life,” Nemhauser said. “And these Medicaid waivers are there to help make it happen, make it a reality.”

Many people associate Medicaid with health care for low-income families. But it’s more than that.

In the early 1990s, the federal government gave states flexibility to use Medicaid funds for non-medical services. The goal was to allow recipients who are elderly or who have disabilities to stay home and within their communities, instead of relying on institutional care. Currently Washington has several Home and Community Based Services Medicaid Waivers.

Nemhauser applied for a waiver when Nate was a toddler. She remembers struggling to provide care. His needs were intensive, and required specialized services like speech and behavior therapies.

“I was starting to wonder, 'Do I have to find him another place to live? I don’t know if I can care for him,'" Nemhauser recalled. "And that’s a really low place to be."

After a nine-year wait, Nate was granted a waiver at age 12. He receives about $6,000 a year in aggregate funds.

Nemhauser says that money is spent on programs to help with Nate’s daily needs. He requires one-on-one support from specialized providers who are experienced in working with people with autism and other disabilities. He needs similar support to participate in recreational activities. The family gets to decide how to allocate those funds.

“If he's spending more time getting employment support, he doesn’t need as much recreational activities,” Nemhauser said. “But there’s never enough.”

According to the Washington State Health Care Authority, nearly 2 million Washington residents are enrolled in Medicaid. The agency is still assessing the impacts of the recently approved federal budget, but it’s projecting up to 320,000 enrollees could lose coverage. The health policy research group KFF estimates Washington stands to lose $36 billion dollars in Medicaid funding.

Supporters of the cuts argue current Medicaid spending is unsustainable, and that the system’s eligibility requirements have been lax, leading to fraud and abuse.

Nemhauser disagrees with that belief.

“I am not seeing the system being misused," she said. "I’m seeing people desperate for help and accessing these as lifesaving measures.”

Continued

Facing the threat to HCBS, Medicaid in West Virginia

Letter to the Editor by Doug Hess, The Shepherdstown Chronicle, August 22, 2025

As policymakers in Washington, D.C. consider the future of essential disability services in West Virginia, it is imperative that we recognize their profound value. Protecting and expanding HCBS is not just about compassionate care; it’s about investing in the well-being of all West Virginians and the economic vitality of our state.

Medicaid Home and Community-Based Services (HCBS) are a crucial lifeline and a smart investment for people with Intellectual and Developmental Disabilities (IDD), their families and West Virginia’s economy. New research provides compelling evidence that HCBS yields significant positive economic and societal impacts, demonstrating that they are not merely an expense, but a powerful engine for community well-being and growth.

One of the most profound societal benefits of HCBS is its ability to enable people with IDD to live fulfilling lives within their own homes and communities, rather than in more costly and often isolating institutional settings. This preference for community-based living is widely shared by Medicaid beneficiaries who, like all of us, desire to participate fully in their communities and have control over their daily lives. In West Virginia, HCBS allows 11,882 disabled people to live, work and participate in communities across the state. Studies show that families receiving HCBS report a higher quality of life and notable improvements in the skills and employment status of people with IDD. Individualized support services and therapeutic interventions provided by HCBS directly contribute to these outcomes.

Beyond enhancing West Virginians’ lives, HCBS also generates tangible economic benefits for our state. HCBS waivers contribute significantly to state economic growth and job creation. Missouri’s Partnership for Hope (PfH) HCBS waiver, specifically designed for individuals with I/DD, is a prime example. This program contributed almost $22.2 million to Missouri’s gross state product (GSP) and was responsible for more than 435 jobs. HCBS programs are also remarkably cost effective. The average per-person cost for state institutions in 2009 was $188,318, compared to just $42,486 for Medicaid-funded HCBS. In Missouri’s case, every $1 spent by the state and its counties on the PfH program leveraged $5.31 in federal funds for supports and services.

These policies also boost our local labor market and help people with disabilities and caregivers have gainful employment. HCBS waivers have been found to increase the likelihood that parents of children with autism will be able to continue working, reducing the need for them to stop employment to care for their child. This not only supports the financial stability of families, but also boosts overall economic productivity.

Medicaid and HCBS are facing some of their biggest threats in history. Home care is classified as an “optional benefit” in West Virginia, making it susceptible to deep cuts, if Congress moves forward with cutting federal investment by nearly $800 billion. The fragility of the system is underscored by existing waiting lists, with 766 West Virginians currently awaiting HCBS. Federal cuts to Medicaid would have devastating consequences, forcing states to reduce services and directly impacting their economies and citizens. In West Virginia, proposed cuts could lead to 69,186 people losing health insurance, an estimated loss of 6,500 jobs and a reduction of $666.3 million in State GDP, in 2026 alone. Such cuts could also shutter rural hospitals and undermine efforts to recruit and retain much-needed staff in care facilities and impose new hurdles, like stricter eligibility checks and work requirements, that disproportionately affect eligible individuals and increase administrative costs.

The evidence is clear: Medicaid and HCBS are an effective and efficient mechanism for improving lives, fostering community integration and stimulating economic growth. We must do everything we can to protect it.

Read the full article here

North Carolina - Medicaid rate cuts will cost state providers $1.1 billion, NCDHHS says

By Brandon Kingdollar, NC Newsline, August 15, 2025

In a virtual meeting with health care providers and community partners Thursday afternoon, North Carolina Health Secretary Devdutta “Dev” Sangvai said upcoming cuts are a response to a “threat to the foundation of the Medicaid program.”

The call came a day after NC Newsline reported the North Carolina Department of Health and Human Services plans to cut Medicaid rates for all providers by 3% effective Oct. 1, with some areas of care like inpatient and residential services and research-based therapy for autism receiving up to 10% rate reductions — for a total of roughly $320 million in cuts. Sangvai first detailed these cuts to leadership of the General Assembly in a letter sent Monday.

The full impact to North Carolina health care providers will be substantially larger than the lost state dollars, as that reduction means a corresponding loss in federal matching funds. A table of rate cuts for different services provided by NCDHHS shows that if the planned reductions take place, patients in North Carolina will receive $1.1 billion less in Medicaid services.

Sangvai told providers the cuts to Medicaid programs will only further contribute to snowballing costs as health outcomes worsen and preventative care is unable to take place. He pointed to the end of coverage for GLP-1 drugs for weight loss and the end of the state’s Healthy Opportunity Pilots, testing non-medical interventions to improve overall health.

“You’re starting to see that some of those services that we have put in place with the idea of spending a little today to save a lot later are going to be suspended. This puts considerable pressure on the Medicaid program to actually bend the cost curve,” Sangvai said. “These were innovations that were put forward with the idea that we can actually lower total cost of care, but with the suspension of both of them, we will not be able to focus on that methodology.”

Continued

Before the One Big Beautiful Bill Act, Idaho braced for federal Medicaid cuts. But not this change.

By Kyle Pfannenstiel, Idaho Capitol Sun, August 18, 2025

For years, Idaho state lawmakers have worried the federal government might cut Medicaid funds.

That’s partly why the Legislature didn’t expand Medicaid to more low-income earners. In 2018, voters approved that policy through a ballot initiative.

Now, as many states brace for federal cuts and policy changes to Medicaid under the One Big Beautiful Bill Act passed by Republicans in Congress and signed by President Donald Trump, Idaho is well-positioned to handle the changes, said Idaho Sen. Julie VanOrden, who chairs the state Senate’s Health and Welfare Committee.

The Pingree Republican pointed to a range of Idaho’s systems that other states are looking to set up, like a panel of state lawmakers to oversee contracts and an emergency fund to deal with higher-than-expected costs.

“A lot of it came from the rising cost of Medicaid. So I think we have that in common with what the federal government is looking at,” she told the Idaho Capital Sun in an interview. 

But the new law passed by Congress gets in the way of Idaho’s plan to tap into one tool to pay providers more for Medicaid services, by capping state-set payment rates.

Medicaid pays a portion of what health care services cost. Mega bill caps payments to providers. 

Medicaid, which insures around one-fifth of Americans, often pays much lower than what it costs health care providers to give out services. 

That’s why in April 2024, the federal agency that regulates Medicaid allowed states to require private companies that manage Medicaid benefits to pay providers rates for services as high as commercial insurance plans pay. 

In the future, Idaho plans to use that structure, called state-directed payments, as part of a new large Medicaid cost-cutting bill approved by the state Legislature this spring that will shift all Idaho Medicaid benefits to being run by private companies. That model, called managed care, is used widely across the country. 

The bill didn’t spell out how high Idaho’s state-directed payments would be. But VanOrden said lawmakers were “banking on” getting the average commercial state-directed payment rates.

“Certainly, it’s a disappointment that we won’t be able to apply for those waivers anymore to get that average commercial rate, which we were banking on,” she said.

But she doesn’t think losing that higher rate will affect Idaho’s funding plans as part of the shift to managed care.

The new federal law caps Medicaid state-directed payments at as high as rates for Medicare, which reimburses more but still not as much as providers say the true treatment costs are. 

Continued

Medicaid cuts could have vast ripple effects in this rural Colorado community

By John Dayey, KUNC News, August 16, 2025

Amid the stark beauty in one of the state’s most productive agricultural regions, there was a sense of unease among the community’s leaders as Congress debated a budget bill that could radically reshape Medicaid, the government health program for low-income people.

Get top headlines and KUNC reporting directly to your mailbox each week when you subscribe to In The NoCo.

“I’m trying to be worried and optimistic,” said Konnie Martin, CEO of San Luis Valley Health in Alamosa, Colorado, the hub for health care services for 50,000 people in six rural counties.

Martin said Medicaid is vital to rural health care.

“I think in Colorado right now, nearly 70% of rural hospitals are operating in a negative margin,” in the red, Martin said.

The health system’s annual budget is $140 million, and Medicaid revenue makes up nearly a third of that, according to Shane Mortensen, chief financial officer for SLV Health.

The operating margin is razor-thin, so federal cuts to Medicaid could force difficult cuts at SLV. “It will be devastating to us,” Mortensen said.

The region is one of the state’s poorest. In Alamosa County, 2 in 5 residents are enrolled in Health First Colorado, the state’s Medicaid program.

It’s a lifeline, especially for people who wouldn’t otherwise have easy access to health care. That includes low-income seniors who need supplemental coverage in addition to Medicare, and people of all ages with disabilities.

Envisioning a future with deep Medicaid cutbacks leaves many patients on edge.

Read the full article here

Connecticut - Health advocates across the state brace for fallout from Medicaid cuts   

By Debra A. Aleksinas, The Lakeville Journal, August 20, 2025

Between 100,000 and 200,000 Connecticut residents could lose health insurance coverage from HUSKY Health, the state’s Medicaid program, over the coming years, severely impacting seniors, healthcare and eldercare facilities, particularly in rural communities.

That assessment from state Comptroller Sean Scanlon, which would impact an estimated one in five people, came on the heels of the passage of H.R.1, the One Big Beautiful Bill Act (OBBBA), signed into law on July 4.

On July 22, Scanlon released a “Special Examination” on the piece of legislation to aid businesses, individuals and families with information on how it will impact them and their lives in the months and years to come.

Included in the comptroller’s 36-page report is a section on Medicaid, in which the state comptroller outlined expected negative impact to not only Medicaid recipients, but also to providers who serve large Medicaid populations, such as hospitals, health care centers and nursing homes. 

Continued

Oklahoma - State leaders brace for ‘heavy lift’ from Medicaid, food stamp changes

During this year’s budget cycle, Oklahoma state Sen. John Haste said lawmakers had two major things on their minds.

“Number one was tax cuts. Number two, what the hell is going on in Washington?” he told a national gathering of state lawmakers last week in Boston.

While Oklahoma lawmakers secured another round of income tax cuts, they are still wrapping their heads around the fiscal impacts of President Donald Trump’s massive spending and tax law, Haste said. The measure slashes funding for health care and food assistance.

That legislation, and other Trump actions, proved a central theme of discussion during the National Conference of State Legislatures summit, which organizers said was the largest ever gathering of state lawmakers with more than 1,600 in attendance. Aside from cutting funding, the law imposes costly new administrative burdens on states.

States are still sorting through the long-term impacts of the legislation — and what, if any, actions they can take to soften the blow.

Haste, a Republican, said concern is highest in rural areas, where reduced Medicaid funding could threaten hospitals. He said that just one provision of the law will cut $209 million in funds that help Oklahoma cover the cost of Medicaid, and that the state will need to spend an estimated $30 million on the new cost of checking eligibility twice per year.

“All of those things added together come up to a really big number,” he said, but added: “We don’t know exactly what that is.”

Lawmakers from liberal and conservative states said they are still grappling with the implications of Trump’s signature legislation. With most states boasting solid fiscal positions, some expect to cover new up-front administrative costs by tapping into strong reserve funds. But many are considering reducing services.

Continued

Please share this offer with your loved one's

Direct Support Professionals!

VOR ❤️s OUR

DIRECT SUPPORT PROFESSIONALS!

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

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

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

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

info@vor.net

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

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

VOR SUPPORTS:

H.R.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.