April 25, 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.

For months now, VOR has been reaching out to Members of Congress, State Governors, Administrators of State DD Services, and other ID/A advocacy organizations to do whatever we can to prevent the proposed cuts to Medicaid.

As several articles in this week's newsletter show, our collective voices are being heard. Now is the time to work even harder to get our message out. We are heading to Capitol Hill in a few weeks, just as Congress begins trying to negotiate the Reconciliation Bill that would, if unimpeded, take away Medicaid from hundreds of thousands of Americans in order to increase tax cuts and giveaways to a small number of millionaires, billionaires, and trillionaires.

Please consider helping our efforts. It's not too late to sign on to our Legislative Initiative. If you cannot attend, any contributions will help strengthen our efforts on Capitol Hill and in following up with whatever the outcome of the Reconciliation Bill may turn out to be throughout the months ahead.

Thank you all, for all you do.

It's not too late to join!

May 12-14, 2025

VOR's Annual Legislative Initiative

Washington, D.C.

We will meet in D.C. on May 12th - 14th

for meetings with

Congressional Staff and Federal Agencies

to discuss issues of critical importance to

individuals with severe or profound I/DD and autism

and their families.

This year's topics are expected to include:



Preventing Cuts to Medicaid

and

Rebuilding and Supporting our DSP Workforce

This event is open to all members of VOR

To register for the Legislative Initiative,

Please Click Here

Unable to join us in D.C. this year?

You can still help by becoming a sponsor!

This is a critical time for our families.

The actions taken by Congress and the Administration

in the next few months could impact the lives of

hundreds of thousands of people with I/DD and autism in the years to come.

Please help us help.

Diamond - $ 5,000

Platinum - $ 2,500

Gold - $1,000

Silver - $ 500

Bronze - $ 250

Advocacy Hero - $ 100

Friends & Families - (Other amounts)

Any and all gifts are welcome

Note: The first few minutes of this presentation clear up a lot of questions our members may have about what constitutes waste, abuse, or fraud, and whether or not these problems can be addressed by the current proposals to cut $880 billion from Medicaid.

The Health Wonk Shop: Understanding Fraud and Abuse in Medicaid

From KFF, April 24, 2025

As Congress considers ways to help pay for extending tax cuts, some lawmakers have suggested that hundreds of billions of dollars in federal savings could be achieved by addressing fraud, waste and abuse in the Medicaid program.

They often cite data about improper payments in Medicaid, which accounted for 5.1 percent of total Medicaid outlays in 2024. While improper payments are a cause for concern and include fraud, they are not a direct measure of fraud and in many cases are the result of lack of documentation or missing administrative steps.

On Thursday, April 24, three experts joined Health Wonk Shop series moderator Larry Levitt in an hour-long discussion designed to unpack claims about fraud and abuse and put them in a larger context. The event addressed such questions as: How do state Medicaid programs ensure program integrity and what does it take to go after fraud? What are the trade-offs? How substantial is fraud and abuse relative to total Medicaid spending? How do fraud and abuse relate to improper payments?

Click here for more information and to watch the video presentation

Supreme Court To Hear Case That Could ‘Gut The ADA And Rehabilitation Act’

By Michelle Diament, Disability Scoop, April 24, 2025

The U.S. Supreme Court is set to consider a case that may have major implications for the Americans with Disabilities Act and Section 504 of the Rehabilitation Act.

The high court will hear arguments in a matter known as A.J.T. v. Osseo Area Schools on Monday. The case centers on whether students with disabilities must show that schools acted in “bad faith or gross misjudgment” in order to claim that their rights were violated under the ADA or Section 504.

But in a last-minute twist, the litigation is now about much more than school-based discrimination claims.

The case was brought by the parents of Ava Tharpe, a Minnesota teenager who has a severe form of epilepsy known as Lennox-Gastaut Syndrome. She is unable to attend school in the morning because her seizures are most frequent during that part of the day. As a result, her parents wanted their school district, Osseo Area Schools, to provide instruction into the evening so that Tharpe could have a full day of school beginning at noon, but the district declined the accommodation.

The U.S. Court of Appeals for the Eighth Circuit determined that the Osseo Area Schools failed to provide Tharpe with a free appropriate public education in violation of the Individuals with Disabilities Education Act. But, the court dismissed discrimination claims brought under the ADA and the Rehabilitation Act, finding that because the alleged wrongdoing was related to educational services, it must meet a higher standard.

“When the alleged ADA and Section 504 violations are ‘based on educational services for disabled children,’ a school district’s simple failure to provide a reasonable accommodation is not enough to trigger liability,” reads the opinion, which cites a 1982 case. “Rather, a plaintiff must prove that school officials acted with ‘either bad faith or gross misjudgment.'”

Attorneys for Tharpe’s family appealed to the Supreme Court noting that lower courts are divided on whether to employ this different standard, which has only applied to disability discrimination cases in schools.

But, in a brief filed with the Supreme Court in late March, attorneys for the Osseo Area Schools widened their argument, saying that the higher standard “is the correct standard across the board, both in schools and out.”

“Every textual and contextual indication demonstrates that Section 504 and Title II (of the ADA) cover only intentional discrimination. The statutes do not impose liability for nondiscriminatory, good-faith denials of requested accommodations,” reads the school district’s brief.

The district’s latest response is a “massive flip-flop” that threatens disability rights protections more broadly, according to Tharpe’s attorneys.

“Before, the district described Ava’s ‘question presented’ as ‘narrow’ and impacting only school-age children with disabilities, … but now it asks this court to embrace a new ‘across the board’ rule that would impair the rights of all victims of disability discrimination,” they wrote in a brief to the Supreme Court. “The district’s approach would gut the ADA and Rehabilitation Act in their most paradigmatic applications. It would violate the text, flout precedent, and upend settled law across the country.”

Continued

A provider's perspective on how Medicaid Cuts would affect intermediate care facilities (ICFs):

Medicaid Cuts Would Devastate Providers Serving ID/DD Populations

By Paul Bergeron, Provider Magazine, April 22, 2025

Medicaid cuts would be devastating to individuals with intellectual and developmental disabilities (ID/DD) and those who care for them. Virtually all 55,000 individuals with disabilities residing in the nation’s 5,300 intermediate care facilities (ICF) are on Medicaid.

ICFs provide active treatment and services for people with significant support needs. They offer 24-hour supervision, health care, therapies, activities, and training to maximize residents’ autonomy and independence. 

Despite being the backbone of ID/DD care, Medicaid reimbursement rates often fall short of covering the actual cost of care, regardless of any future cuts. This underfunding has led to longer waitlists for home and community-based services programs, facility closures, and reduced access to timely, essential support that individuals desperately need.

The drop in ICFs, which has declined by more than 16 percent over the last 10 years, compounds the problem. Furthermore, newer facilities are not being built and certified at nearly the same pace as closures. This ultimately leads to fewer active Intermediate Care Facilities for Individuals with Intellectual and Developmental Disabilities (ICFs/IID) and patients seeking care elsewhere or not at all.

Data show ICFs/IIDs are performing well. Centers for Medicare and Medicaid Services (CMS) survey ICFs/IIDs for regulatory compliance. Over 90 percent of surveys conducted in 2024 found zero condition-level deficiencies and demonstrated a commitment to quality care. 

Medicaid Doesn’t Cover Enough

Medicaid does not fully cover the cost of care for individuals with intellectual and developmental disabilities. Access to quality long-term services and supports (LTSS) is at risk without adequate funding.

Provider taxes are one solution to expand services and support high-quality care. For more than 40 years, provider assessments (also called provider taxes) have helped states stabilize Medicaid funding and maintain care for vulnerable populations. There are 49 states and Washington, D.C., that rely on provider taxes to ensure that providers can continue serving Medicaid beneficiaries, and 32 of such states and D.C. apply these assessments for ICFs/IID.

Some federal budget proposals aim to lower the “Safe Harbor” limit on provider taxes from the current 6 percent, limiting states’ ability to use provider taxes. This would cut Medicaid funding without a replacement solution and reduce access to essential care for ID/DD populations while undermining efforts to recruit and retain much-needed stay in care facilities.

Medicaid is a lifeline for individuals with intellectual disabilities, especially those children and adults receiving 24-hour specialized care in ICFs/IIDs,” said Jamie L. Anthony, LSW, executive director, Developmental Options, a small non-profit organization located in Southeastern Idaho.

“ICFs provide essential access to health care, support services, and community resources, ensuring the individuals served receive necessary care and support to lead fulfilling lives and promote their independence and social inclusion,” Anthony said. “Without Medicaid, many would face significant barriers to essential services, limiting their opportunities for growth and well-being.”

Forced to Reduce Services

“The ICF industry has been plagued with funding challenges for over a decade, doing more with less, resulting in a significant decline in facilities nationwide,” Anthony said. “ICF providers rely upon Medicaid dollars for operation, allowing the industry to continue to survive for those individuals who benefit from the high-quality, individualized care plans and services.”

Anthony added, “Without Medicaid, or with significant cuts to Medicaid, they could face closure or be forced to reduce services. This would leave individuals with intellectual and developmental disabilities without access to critical care, potentially leading to institutionalization, neglect, or a lack of proper support in the community. Families may struggle to find alternative care options, and the overall quality of care could diminish.”

“We have reached a point where there are no further expense areas to reduce without significantly impacting essential services or operations, said Anthony. “Every line item has been carefully evaluated, and additional cuts would compromise the program’s core functions, quality of service, or overall sustainability. At this stage, the budget is already operating at minimal levels, and any additional reductions would harm the provider's ability to meet its goals.”

Hiring Challenges Are Persistent

Debbie Jenkins, advocacy director, Ohio Health Care Association, said that for a long time, ICF members have struggled to attract and retain the direct support professionals (DSPs), nurses, and other staff needed to care for their residents.

“For several years, they had to turn away people needing services because they couldn’t find enough staff to care for them,” Jenkins said.

In July 2023, the Ohio legislature passed HB 33, which invested significantly in ICF services to help increase wages. “This investment has stabilized most of our ICF providers' workforces,” Jenkins said. She said that during the past year and a half, her members told her that they have been able to adequately staff their current residents and take on a few new residents.

“However, challenges remain for serving people with significant needs requiring higher staffing ratios,” Jenkins said. “If Medicaid reimbursement for services is cut, any progress made in Ohio in the past year and a half would be lost. Providers would not be able to continue supporting their current wages, much less keep up with any future inflation.”

Additionally, Ohio has a pending provision in its budget bill that would eliminate the expansion population if the FMAP is reduced from the current 90 percent. 

“Our rates do not cover these employees' full health insurance costs,” Jenkins said. Many DSPs are on Medicaid through the expansion population eligibility. If that goes away, we anticipate some DSPs will leave ICFs to find employment that includes health insurance benefits. These cuts would devastate the ICF workforce and leave many residents without care.”

Continued

Voters in Every Congressional District Oppose Cuts to Medicaid

Survey from Caring Across Generations, via Data For Progress, April 23, 2025

Republicans in Congress are currently considering a budget package that would include devastating cuts to Medicaid. From March 28 to April 14, Data for Progress conducted a series of surveys to assess voters’ attitudes toward Medicaid funding levels. Nationwide, 50% of voters want Congress to increase funding for Medicaid, 38% want funding to be kept as it is, and 8% want to cut funding. 

We additionally tested voters’ attitudes on funding levels for home and community-based services (HCBS), which would also be under threat with the GOP budget package. Fifty-two percent of voters nationally want to increase funding for HCBS, while 38% want to keep current levels of funding, and only 5% believe funding should be cut.

The surveys were then modeled using a synthetic area weighting technique to estimate results at the congressional district level. 

The model finds that in every congressional district in the U.S., less than 15% of voters support cuts to Medicaid. This same pattern is true for HCBS funding.

The map below displays the percentage of voters in each congressional district who believe Medicaid funding should be cut and the percentage who believe HCBS funding should be cut (you can view each by using the dropdown menu below).

Click on the map above to link to the interactive map in order to view your district

Survey Questions

Lawmakers in Congress are considering funding levels for each of the following. For each, please say if you think we should increase or cut its federal funding, or if we should keep federal funding at its current level.

Medicaid

• We should increase federal funding for this.
• We should keep funding at current levels.
• We should cut federal funding for this.
• Don’t know

Home and community based services (HCBS) allow aging adults and people with disabilities to live independently and receive care services in their homes and communities, like helping someone bathe and dress or providing transportation.

• Do you think we should increase or cut federal funding for home and community-based services, or should we keep federal funding at its current level?
• We should increase federal funding for this.
• We should keep funding at current levels.
• We should cut federal funding for this.
• Don’t know

Click here to read the full article and access the interactive map

Republicans Want to Expand Medicaid, New Poll Shows

By Suzanne Blake, Newsweek, April 18, 2025

A new survey reveals that Republican voters across the United States, including in states that have not expanded Medicaid, widely support keeping or increasing federal spending on the program.

Why It Matters

The University of Maryland poll results challenge the assumption that Republican voters support congressional efforts to roll back the federal health insurance program for low-income Americans.

The contrast between public sentiment and legislative action is stark. Republican proposals could result in as many as 20 million people losing Medicaid coverage if the federal government scales back its 90 percent match for expansion states, according to a February report the non-partisan Kaiser Family Foundation (KFF).

Roughly 75 percent of Republicans overall favor maintaining Medicaid spending, and 49 percent support increasing it, according to the April 2025 poll from the University of Maryland's Program for Public Consultation (PPC).

Among Republicans in the ten states that have not expanded Medicaid under the Affordable Care Act, 69 percent support joining the expansion, compared to 83 percent in states that have already expanded it.

The poll, which was conducted April 4 to 9, included 1,195 adults nationally. The margin of error is plus or minus 3.1 percentage points.

These findings are at odds with recent moves by Republican lawmakers in Congress, who are advancing budget proposals that could reduce funding for programs including Medicaid by up to $880 billion over the next decade.

Trump has expressed public support for Medicaid in past remarks, saying he would "love and cherish" the program.

However, the current GOP budget framework would likely require cuts to reach mandated savings levels. As the Center on Budget and Policy Priorities notes, "reductions to federal Medicaid funding would likely force states to cut eligibility, benefits or provider payments."

The Republican Party has been looking to pass spending cuts as a way to extend the Tax Cuts and Jobs Act (TCJA), which would add another $4.5 trillion in spending.

Continued

MAGA world signals it will protect Medicaid

By Caitlin Owens, AXIOS, April 23, 2025

There are growing signs that Trump-aligned forces are ready to go to war with House Republicans if they attempt to pass large Medicaid spending cuts.

Driving the news: New polling from a top Trump campaign pollster shared exclusively with Axios has found the Medicaid program is popular among all voters, including those who cast their ballot for Trump — yet another sign of the political peril of cutting it.

• The results of the polls aren't surprising; it's the names of the firms conducting them and concluding that lawmakers who vote to cut Medicaid could lose voter support.

The big picture: Some proponents of major spending reductions within the Medicaid program say they're simply eliminating waste, fraud and abuse, or returning the program to its original purpose.

• It's been unclear whether moderate Republicans in the House and Senate will buy this line. It's now becoming increasingly unclear whether MAGA world will, either.

Zoom in: New polling conducted by McLaughlin & Associates — a top Trump campaign polling firm — found overwhelming majorities of voters in battleground congressional districts support the Medicaid program, including 78% of Trump supporters.

What they're saying: "It would just be absolutely detrimental to Republicans to cut Medicaid, cut Social Security, and the president has been very clear in saying we will never touch it," a key MAGA-world adviser and source close to the administration told Axios.  

Read the full article here

Changes are coming at the Department of Health and Human Services. That is certain. But the nature of these changes, and how they will affect the ID/A population remain unclear.

While administrators talk about cutting funding to decrease waste, abuse, and fraud, their first moves were to cut staff at the Office of the Inspector General - the very department that investigates waste, abuse, and fraud.

The Administration for Community Living has been dissolved, folded into the body of HHS, but no one knows what that means, as many of the ACL administration remain active and appear to be continuing to work as before.

There also appears to be talk about changes to Protection and Advocacy groups, who work collectively under the banner of the National Disability Rights Network. So far, though, no definite cuts or changes to the mission or funding of P&As have been announced.

The following articles are included here to give a picture of what may

- or may not -

be happening in these turbulent times.

HHS Plans to Cut Funds Used to Investigate Abuse at Group Homes

By Julai Metraux, Mother Jones, April 21, 2025

On Wednesday, a leaked draft Health and Human Services budget document revealed, among other sweeping cuts to health- and disability-related services, that Secretary Robert F. Kennedy Jr.’s department plans to defund protection and advocacy services for people with developmental disabilities—including autistic people, about whom Kennedy also spreads harmful disinformation. The budget document is a proposal, pending official release and eventually congressional approval; it’s also unclear whether suggested cuts originate with Kennedy’s HHS or Project 2025 architect Russell Vought’s Office of Management and Budget.

Federal funding for nongovernmental organizations to provide legal and advocacy services to people with developmental disabilities started in 1978 with the Developmentally Disabled Assistance and Bill of Rights Act. There are now 57 protection and advocacy agencies—one in every state, every territory, and in Washington, DC—that work to enforce the rights of people with developmental disabilities, those with mental health conditions, and other disabilities. The agencies, known as P&As, are overseen by HHS’s Administration for Community Living—which is being dismantled.

“What they’ve outlined here is eliminating almost all of the disability infrastructure in this country providing for services, supports, [and] research across the board to disabled people,” said Kate Caldwell, director of research and policy at Northwestern University’s Center for Racial and Disability Justice. Protection and advocacy agencies, Caldwell explains, are granted what’s called “access authority,” powers that allow them to independently investigate reports of abuse in facilities and community settings.

Caldwell is also very concerned, she says, about the draft budget’s proposed elimination of funding for the University Centers for Excellence in Developmental Disabilities Education, Research, and Services, and for state developmental disability councils.

Those cuts, as Caldwell noted, can’t just come from the executive branch—and would unquestionably spark legal action. “If HHS withheld funding or dismantled the program without an actual statutory repeal,” Caldwell said, “it would face multiple lawsuits from disability rights organizations, as well as state attorneys general, for violating the law.”

Continued

Democrats Launch Inquiry Into Dismantling of Administration for Community Living

By Julai Metraux, Mother Jones, April 24, 2025

On Thursday, House Reps. Bobby Scott (D-Va.) and Suzanne Bonamici (D-Ore.) introduced a formal inquiry demanding more information from Health and Human Services Secretary Robert F. Kennedy Jr. on the decision to dismantle the Administration for Community Living (ACL), which oversees programs vital to independence and quality of life for disabled and aging adults. Kennedy’s HHS moved to close the agency at the end of March as part of massive layoffs and cuts expected to claim some 10,000 federal jobs and drastically reduce services.

Reps. Scott and Bonamici’s inquiry requests all communications, including meeting notes and legal memos, from both President Donald Trump and Secretary Kennedy that touch on the agency’s proposed elimination, layoffs of ACL employees; discussions on dismissing its leadership, grant terminations, actions related to Kennedy’s ‘‘HHS Announces Transformation to Make America Healthy Again’’ release announcing the move, and evidence of actions showing that laws governing ACL’s congressionally mandated work will still be followed, such as federal compliance with the Older Americans Act and Assistive Technology Act.

“HHS Secretary Kennedy’s decision to eliminate ACL is unacceptable and will be harmful to the millions of Americans who benefit from essential programs like Meals on Wheels,” Bonamici said in a statement. “We are demanding answers about why and how Secretary Kennedy made this harmful decision and will keep up the pressure until it is reversed.”

If the House Education and Workforce committee to which the inquiry is referred does not take action within 14 days, Scott and Bonamici can bring a motion demanding accountability before the House as a whole.

Around 40 percent of the agency’s 200 employees have so far been laid off, including all staff at its efficiency-focused Center for Policy and Evaluation. 

Continued

Disability Network Warns: Eliminating ACL Will Endanger Lives, Erode Rights, and Collapse Community Supports for 1 in 4 Americans

Press Release from National Disability Rights Network, April 24, 2025

On April 16, 2025, a 64-page draft budget proposal from Trump’s administration’s Office of Management and Budget (OMB), dated April 10, 2025, was leaked and became public.

The document, known as a “passback,” included proposed major funding cuts to the Department of Health and Human Services (HHS). Among those cuts are the complete elimination of large parts of the Administration for Community Living (ACL).

The National Association of Councils on Developmental Disabilities (NACDD), the Association of University Centers on Disabilities (AUCD), and the National Disability Rights Network (NDRN) stand unified in strong opposition to the President’s proposed elimination of the Administration for Community Living (ACL).

This move does not represent a budget cut or a “reduction in bureaucracy and inefficiency”. The elimination of ACL and many of its programs is a direct and deliberate attack on people with disabilities, their families, and the systems that protect their rights, health, and independence. 

In 1975, Congress enacted a more comprehensive Developmental Disabilities Assistance and Bill of Rights Act, which included the formation of:

• State Councils on Developmental Disabilities (DD Councils)
• Protection and Advocacy (P&A) systems
• University Centers for Excellence in Developmental Disabilities (UCEDDs)

These programs were designed to empower states, ensure civil rights protections, and support systems change, all of which appealed across the aisle, ensuring bipartisan commitment.

These programs effectively form the DD Network, which is funded by and housed under ACL funds.

Continued

Trump Cuts Threaten Agency Running Meals on Wheels

By Reed Abelson, The New York Times, April 24, 2025

A tiny division responsible for overseeing services for people with disabilities and older Americans is being dismantled as part of an overhaul by Robert F. Kennedy Jr., the health secretary.

Every Monday, Maurine Gentis, a retired teacher, waits for a delivery from Meals on Wheels South Texas.

“The meals help stretch my budget,” Ms. Gentis, 77, said. Living alone and in a wheelchair, she appreciates having someone look in on her regularly. The same group, a nonprofit, delivers books from the library and dry food for her cat.

But Ms. Gentis is anxious about what lies ahead. The small government agency responsible for overseeing programs like Meals on Wheels is being dismantled as part of the Trump administration’s overhaul of the U.S. Department of Health and Human Services. Roughly half its staff has been let go in recent layoffs and all of its 10 regional offices are closed, according to several employees who lost their jobs.

“I’m just kind of worried that the whole thing might go down the drain, too,” Ms. Gentis said.

In President Trump’s quest to end what he termed “illegal and immoral discrimination programs,” one of his executive orders promoted cracking down on federal efforts to improve accessibility and representation for those with disabilities, with agencies flagging words like “accessible” and “disability” as potentially problematic. Certain research studies are no longer being funded, and many government health employees specializing in disability issues have been fired.

The downsizing of the agency, the Administration for Community Living, is part of far-reaching cuts planned at the H.H.S. under the Trump administration’s proposed budget.

While some federal funding may continue through September, the end of the government’s fiscal year, and some workers have been called back temporarily, there is significant uncertainty about the future. And some groups are reporting delays in receiving expected federal funds.

“There’s a lot of confusion,” said Becky Yanni, the executive director of the Council on Aging in St. Johns County in Florida. She said she has been told that the most recent funding for its Meals on Wheels program and other services might be late.

If the funding does not arrive, “in a lot of communities, you will be looking at cuts in services,” said Sandy Markwood, the chief executive officer for USAging, which represents the network of area agencies of aging.

The community living division helps coordinate services and provide funding for older and disabled Americans so they can stay at home rather than live in a nursing home. With a budget of $2.6 billion, the unit represents a minuscule fraction of total H.H.S. spending.

Under the reorganization introduced by Health Secretary Robert F. Kennedy Jr., the community unit’s responsibilities will be divided among other agencies, including the Centers for Medicare and Medicaid Services and the Administration for Children and Families.

“This consolidation allows the department to better meet the current health needs of vulnerable populations across the country,” a spokeswoman for H.H.S. said in a statement. “This does not impact the important work of these critical programs as it will continue elsewhere within H.H.S.”

So far, several programs under the unit will be eliminated under the proposed budget, including one that provides ombudsmen in nursing homes, to help ensure the safety and welfare of residents, and respite care programs, to provide a break for those caring for an older person or person with disabilities. States would also have more latitude in determining where funds should be allocated.

Continued

Kansas - "Sens. Marshall and Moran, you have the power to stop Medicaid cuts" | Opinion

By Gary Blumenthal Special to The Kansas City Star, via the Wichita Eagle, April 18, 2025

As the brother of a man with profound autism, my advocacy didn’t begin in a policy office — it began at home. Steve, my brother, was born in Kansas City before federal laws guaranteed education for all children. Rejected by Kansas City and Shawnee Mission public schools, he was marginalized from the start. Like so many families, we were left to navigate a world that too often looked the other way.

That personal experience led me to become a teacher, a member of the Kansas House of Representatives and later, a federal disability official in both the Clinton and Obama administrations. Today, I serve as senior policy adviser to the National Alliance for Direct Support Professionals. And still, decades later, I’m fighting the same fight — this time against a catastrophic assault on Medicaid.

President Donald Trump and Secretary of Health and Human Services Robert F. Kennedy Jr. are pushing to slash $880 billion from the part of the budget that funds Medicaid. Let me be clear: This is not belt-tightening. This is a wrecking ball aimed directly at the system of care that keeps people with disabilities, seniors, and low-income Americans alive and connected to their communities.

Medicaid is not a luxury. It’s a lifeline.

In Kansas and Missouri, Medicaid supports hundreds of thousands of people — from individuals with intellectual and developmental disabilities to nursing home residents, to children and pregnant women. It pays for the direct support professionals who help people eat, bathe, work and live with dignity. My organization represents the people who work directly to help those with intellectual disabilities live in their own homes. Without this workforce and Medicaid, the disability system will collapse.

This is not an exaggeration. Providers will shut down. Wait lists will grow longer — or become permanent. Families already under stress will be forced into crisis. People who have spent years building lives in their communities could be forced back into institutions or abandoned entirely.

And the direct support professional workforce — already in short supply — will be devastated. Jobs lost. Lives upended.

The Republican senators from Kansas and Missouri — Roger Marshall, Jerry Moran, Josh Hawley and Eric Schmitt — now face a choice. Sen. Schmitt, whose son lives with significant disabilities, understands the strain families face. But will he — and the others — have the courage and backbone to say: No to Elon Musk. No to Trump. No to RFK Jr.

Sen. Moran and I served together in the Kansas Legislature. I remember him as thoughtful. I hope he can summon that same resolve now. Sen. Hawley has recently expressed concern about cuts to Medicaid in Missouri — especially since voters there have enshrined it in the state’s constitution. That’s commendable. But concern must become action.

And Sen. Marshall? Silence on these drastic cuts, in this moment, is complicity.

This is not the time for party-line votes or political calculation. This is the time to stand up and lead — for families, for workers, for the values we claim to represent.

This is the line in the sand.

Continued

Maine - Proposed autism registry is ‘dangerous,’ Maine disability rights activists say

By Hannah LaClaire, Portland Press Herald, April 23, 2025

Maine autism and disability rights advocates say a proposed national registry for people with autism — coupled with recent inflammatory comments from Health and Human Services Secretary Robert F. Kennedy Jr. — will undermine decades of knowledge and acceptance about the condition and threaten patient privacy.

As part of a new effort to study autism, the National Institutes of Health is amassing private medical records from federal and commercial databases, including pharmacy chains, lab tests and data from patients treated by the Department of Veterans Affairs and Indian Health Service, private insurance claims, and data from smartwatches and fitness trackers, CBS News reported Tuesday. The NIH is also in talks with the Centers for Medicare and Medicaid Services to increase access to its data.

According to Dr. Jay Bhattacharya, head of the NIH, the data will allow 10 to 20 groups of outside researchers to study “comprehensive” patient data with “broad coverage” of the U.S. population for the first time. Bhattacharya did not give details on how the research teams will be selected but said they will not be able to download the data.

As part of the study, a new “disease registry” is being launched to track Americans with autism, CBS said. Details on the registry and what information it will track were not immediately clear.

The announcement further solidifies an ongoing shift away from supporting people with autism living in their communities, said Staci Converse, managing attorney and leader of Disability Rights Maine’s developmental disabilities team.

For example, the Department of Education’s Institute of Education Sciences, which has historically been a major funder of autism research, was recently gutted in the Trump administration’s layoffs, Time reported. The institute’s research focused on developing and evaluating school-based interventions for students.

Last month, Kennedy announced plans to eliminate the Administration for Community Living, an agency to support disabled and aging people, including adults with autism.

“There’s a shift away from supporting people in the community, which for decades has been the goal … to (finding) a medical cause that I don’t think exists,” Converse said. “This is a huge step backward. It’s, quite frankly, heartbreaking.”

Kennedy has frequently repeated false claims linking autism to vaccines and has hired a discredited vaccine researcher to investigate the disproven theory.

The announcement comes on the heels of Kennedy’s claims that autism is a “preventable” disease — or an epidemic — that “destroys families” and has been “catastrophic for our country.”

Last week, Kennedy said during a news conference that children with autism “will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go on a date, many of them will never use a toilet unassisted.”

He previously vowed to find the cause of autism by September, but has since walked that back.

Sen. Susan Collins, who last year sponsored the Autism Cares Act and voted to confirm Kennedy, said in a statement that she has asked the NIH for more information on the implementation of the program, including how they plan to obtain, safeguard and use the data.

“While I acknowledge the secretary’s interest in funding autism research, medical records are highly personal and subject to certain legal protections, and the privacy and dignity of Americans living with autism must be respected,” Collins said, adding that Kennedy and Bhattacharya should work directly with autism advocacy organizations and families affected by autism on future proposals.

Collins added that she was disappointed by some of the language Kennedy has used to describe people with autism.

“My husband’s son had severe autism and was never verbal. His experience, and that of many other families, is one of the reasons I have always been a strong advocate of funding for autism research and why I support studies to better understand how autism develops and how to improve the quality of life for people with autism and their caregivers,” she said.

Read the full article here

Illinois - Meier Calls Out IL Department of Human Services

By WGEL News Staff, April 18, 2025

State Representative Charlie Meier (R-Okawville) joined a number of House Republicans in a Capitol press conference Tuesday to discuss what they say are the failures and mismanagement at several Illinois agencies. Agencies under Governor J.B. Pritzker’s leadership have been riddled with controversy among reports of abuse, neglect, and improper procedures.

Rep. Charlie Meier, who has been a staunch advocate for people with developmental disabilities since taking office, focused on the disasters that have happened at the Illinois Department of Human Services (DHS). Meier pointed to several reported incidents of abuse at Community Integrated Living Arrangements (CILAs), that are not properly reported or investigated.

“Without DHS acknowledging their lack of oversight and the tragic abuse that happens at CILAs and SODCs as a result of their negligence, these tragedies of abuse will continue to be allowed to occur with no responses,” Meier said. “I am glad to help fight abuse anywhere, and it should all be stopped. It seems strange that we don’t follow up on our small CILAs.”

Meier pointed out that there are significant backlogs in investigating abuse at State-Operated Developmental Centers (SODCs) and CILAs due to bureaucratic delays. Rep. Meier also highlighted a recent audit by the Auditor General, which revealed that many CILA agencies failed to report emergency incidents properly, with DHS unable to determine what constitutes an “emergency.” This lack of accountability, he stressed, allows problems to go unchecked.

Continued

Last week's news:

Arizona - Hobbs vows to veto all bills until disability funding crisis resolved

By Caitlin Sievers, AZ Mirror, April 17 2025

Arizona’s Democratic governor has promised to veto every piece of legislation that Republicans send to her until the legislature passes a “reasonable, negotiated” funding bill to prevent the state’s Division of Developmental Disabilities from going broke next month. 

Republicans who control both the Arizona House of Representatives and Senate responded that they’ve already introduced proposals in both legislative chambers that would get DDD through the end of the fiscal year on June 30. But Gov. Katie Hobbs, as well as dozens of parents of developmentally disabled people who rely on DDD programs and services, have said the drastic cuts in the Republican bills are untenable. 

Continued

This week's updated news:

Last-minute deal poised to avert crisis for 60,000 Arizonans with developmental disabilities

By Caitlin Sievers, AZ Mirror, April 23, 2025

Relief is in sight for Arizonans with developmental disabilities who depend on government-funded services and the loved ones who care for them. 

Just seven days before the state’s Division of Developmental Disabilities is expected to run out of money, the Arizona House of Representatives voted 48-11 to pass a supplemental funding bill that would ensure it can keep paying its bills.

The vote came after 7 p.m. on Wednesday, following hours of closed-door negotiations. After lawmakers approved an amendment adding provisions from a deal Republicans struck with Gov. Katie Hobbs to settle the disability funding, House Bill 2945 garnered unanimous support from Democrats and dissent from only 11 Republicans, most of them members of the far-right Arizona Freedom Caucus. 

“This has not been easy, but we will help save lives.” Rep. David Livingston, R-Peoria, said before voting for the bill. 

The bill will head to the Senate next, where a different funding proposal passed with only Republican support on Wednesday morning, which Hobbs, a Democrat, declared “dead-on-arrival.” That legislation failed to pass the House earlier on Wednesday, sparking the talks that ended up breaking the logjam and leading to a deal.

In a statement on Wednesday evening, Hobbs expressed support for the bill the House approved. 

Arizonans with disabilities and their families have been awash in anxiety, finding themselves forced to grapple with the increasing likelihood that they’ll lose access to crucial services in May, all because the Republicans who control the state legislature and the governor continue to fight over how to resolve a $122 million funding shortage at DDD. 

Continued

New Hampshire - People can’t wait: Supporting adults with disabilities is a moral and fiscal priority [Opinion]

By Rebecca Bryan Tolman, New Hampshire Bulletin, April 18, 2025

When we welcome a child into the world, we do so with hope, determination, and an unspoken understanding that, over time, they will grow into independent adults. We nurture them through childhood, guide them through adolescence, and eventually send them off into adulthood with the skills and support to navigate life on their own.

But for thousands of families across New Hampshire, this traditional parenting path is not reality.

At Lakes Region Community Services (LRCS), we support individuals with developmental disabilities and acquired brain disorders who need lifelong assistance. They depend on services funded through Medicaid waivers to live independently, safely, and with dignity — in their homes and communities.

But today, many of them are waiting.

They wait for staff — due to a workforce crisis that has left our system of care severely understaffed. Direct support professionals are the backbone of our work, but low wages, high stress, and lack of state investment have made it nearly impossible to recruit and retain qualified caregivers. Families who qualify for services can’t use them because there’s no one available to deliver them.

Now, to make matters worse, a budget crisis is threatening to add another wait — for funding.

The combination of these two crises is devastating. Without workers, people wait. Without funding, more people will be forced to wait longer. The proposed state budget is effectively bottlenecking services at both ends — failing to fund the resources we need and failing to build a workforce that can deliver them. The result? A growing number of adults with disabilities left in limbo, and families left to carry the full weight of care with no relief in sight.

Without these essential services — funded through Medicaid waivers and coordinated by nonprofit organizations like LRCS — many adults with disabilities will be forced into more restrictive, more expensive, and less humane forms of care. Natural family caregivers who are currently sustaining them are saving the state millions of dollars every year simply by keeping their loved ones at home. But that system is stretched to its breaking point.

It is unrealistic, and ultimately unjust, to expect parents — many of whom are entering their 60s, 70s, and 80s — to provide 24/7 care indefinitely. These are parents who have spent decades managing complex medical needs, advocating for education and services, and serving as unpaid caregivers while navigating their own health and aging. Their children — adults with disabilities — are still waiting for the resources and support that would allow them to live in supported apartments, hold jobs, volunteer in their communities, and live with dignity and autonomy.

The alternative? A system that is not prepared. New Hampshire simply does not have enough professional, non-family providers. If families cannot continue, and services are not in place, the state will be faced with an influx of individuals requiring round-the-clock care — care that is not only vastly more expensive, but far less person-centered.

This is not just a crisis in human terms. It is a policy failure with very real fiscal consequences.

Continued

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

VOR SUPPORTS:

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.