March 21, 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.

All Are Invited!

Join Senators Schumer, Wyden, and

Other Senate Democrats for a

Virtual Town Hall

to

Defend Medicaid

Wednesday, March 26, 2025

3:30 - 5:00 pm Eastern

Senators Schumer, Wyden, and others are presenting a virtual town hall to talk about the fight to defend Medicaid.

When you sign up, you can also share your story, which will be sent directly to Senators from your state.

You must register to attend.

March is

Developmental Disabilities Awareness Month

Please join us on Capitol Hill

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

Please register early, to reserve your spot

Registration is free until March 15, 2025

So please register now!

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!

We are still far short of our goal for sponsorships

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

Opinion: Medicaid cuts will hurt everyone, not just those in need

By Elaine Batchlor, The Hill, March 16, 2025

As a doctor and CEO of a hospital and health care group who has worked in health care for more than 30 years, I know from experience that cutting Medicaid won’t make health care more accessible, affordable or efficient for anyone. In fact, it will do the opposite: It will harm urban and rural communities, affluent and poor alike.

Why? Because we are all connected in our health care system. When one part of the system struggles or fails, the burden is shifted to other parts of the system, crossing community boundaries.

Currently, Medicaid covers more than 80 million people, or about 21 percent of the population, including pregnant women, people with disabilities and many people in long-term care facilities. As a growing number of Americans — including many Republican voters — receive care that is paid for by this public insurance plan, it has become a critical foundation for maintaining health, saving lives and preventing medical debt. Medicaid improves the chance for a healthy birth. It provides better access to primary care — the most effective way to prevent illness and reduce costs. 

Cuts to Medicaid will put additional pressure on stressed and overcrowded providers. Access to doctors and services, already limited in rural and poor urban communities, will become even worse. And I know one thing with certainty: If the federal government cuts back on care, people won’t stop getting sick. 

Forced reductions in access through budget cuts will lead to patients delaying care and eventually arriving in emergency departments with advanced diseases. We may see temporary savings in one row of a balance sheet, but it will be an illusion, as costs for emergency and inpatient care increase. 

Nearly half of hospitals in our country are operating at a loss. These hospitals are already cutting back on services — closing labor and delivery departments and eliminating staffing for patient beds. When these budget reduction measures fail, entire facilities may close, often those that serve the most vulnerable. 

This is when the impact is felt in neighboring hospitals, as patients seek care outside of their communities, exacerbating crowding and delays in those facilities. We experienced this here in South LA, when King-Drew Medical Center closed in 2007. Facilities 10 to 20 miles away, including Cedars Sinai in Beverly Hills and UCLA Medical Center in Santa Monica, were forced to absorb patients who still needed care.

Health care may not be well organized, but it is interconnected. Pressure in one part of the system creates pressure in another. Some leaders may not be concerned about worsening care for poor communities, but as cuts reverberate through the system, privately insured constituents will also be affected. When providers are paid less for Medicaid patients, privately insured patients will pay more. 

Read the full article here

Why Most States Will Not Replace Federal Medicaid Cuts

By Drew Altman, KFF, March 21, 2025

Whether you are for the Medicaid cuts under discussion or against them, don’t expect many states to replace significant cuts in federal Medicaid funding. If any state does, it may lead to cuts in other state programs outside of health care such as corrections, environmental protection, social services, transportation, education or higher education, or possibly force some states to raise taxes.

That’s primarily because states are required to balance their budgets, and generally only increase spending to cover inflation unless state revenue growth is unusually strong. Even then, many states choose to put new revenues into rainy day funds rather than increase spending they may not be able to sustain in the future. State revenue growth has been weak and is at best expected to return to normal.

State spending on Medicaid is already the second-largest item in most state budgets (and the largest with federal funds added in). Because health costs almost always outpace inflation, merely maintaining current Medicaid coverage and benefits generally requires a larger percentage increase in spending than other budget lines do, and Medicaid consumes an oversized share of the new dollars available to states each year when they put their budgets together. I have experience being the least popular person around the table in state cabinet meetings when education, higher education, corrections, environmental protection, and transportation could not get their share of new dollars for their priorities because it was already spoken for by the routine annual Medicaid increase. As one state senator said to me: “Commissioner, you mean you need a third of the budget increase just for your Medicaid division, but you are not covering a single new person?”

In the “umbrella” agency I ran (for a Republican governor), more money for Medicaid also meant less money for welfare and welfare checks, children’s and family services, psychiatric hospitals and community mental health services, developmental disabilities, veteran services, school-based services, homelessness, people who are blind or visually impaired, as well as a long list of other social services programs. Partly that was about money and partly it was about the realities of state budget politics. A single department and cabinet member, no matter how worthy the purposes or artful the leader, could only get so much of the new money available in a state budget each year.

A few illustrative numbers help show why it’s so hard to replace lost federal Medicaid funding and how it would impinge on other state priorities to do so:

A rough estimate is that Ohio would have to replace $2 billion a year in lost federal funding if Congress discontinued the enhanced federal match for the Medicaid expansion. That’s about what it spends on higher education ($2.7 billion), and corrections ($2.3 billion).

Arizona would lose approximately $1.9 billion annually in federal matching funds for its expansion. It spends $1.5 billion a year on corrections and $3.1 billion on transportation.

Eliminating the enhanced federal match for the expansion may or may not happen. Or it may partly happen. Some Republicans in Congress now question whether the enhanced match should have been provided in the first place (it operates to incentivize states to expand coverage knowing they could not do it on their own). But if the enhanced match is cut or eliminated, it will illustrate how difficult it will be for states to replace lost federal Medicaid funding. For many states it’s the equivalent of coming up with an amount equal to their corrections or transportation or higher education budgets. Typically, it would be more than all state spending on social services on which hundreds, and in larger states like California, thousands of community organizations depend.

[If] you allocate the $880 billion dollars in Medicaid cuts Republicans are currently contemplating to the states based on their usual share of federal funding, and look at a few swing states, a similar picture emerges. Michigan would lose $2 billion a year, which is a bit less than it spends annually on higher education ($2.7 billion). Wisconsin would lose $1 billion a year, about what the state spends annually on corrections ($1.3 billion). North Carolina would lose $3 billion annually, more than the state spends each year for corrections ($2.1 billion).

Cuts also roll downhill in many states in the form of less funding for counties which, in turn, have to make cuts of their own.

There is an unwritten handbook state human services and Medicaid officials use for cutting Medicaid if they have to. First, make the case for the state funding to replace any shortfalls. Then cut payments to providers (which are often already low). Then selectively reduce benefits if you can. Then last on the list, cut people from the program. With large cuts in federal spending, the latter will be unavoidable.

Governors know they will take the heat if they get billions less in Medicaid funding during their terms, knocking a hole in their state budgets and forcing them and their human services and Medicaid chiefs to make cuts in eligibility, benefits and reimbursement that will upset providers and voters. Cuts to “provider taxes” or directed payments” may be opaque and hard to follow for the public. But governors will do the math, and a lot will depend on how they respond.

Whatever the arguments for and against the Medicaid cuts that end up being proposed and however the politics play out, don’t expect very many states to replace lost federal funding.

Read the full article here

And, if you haven't already reached out:

Contact Your Governor!

Two weeks ago, we sent out snail-mail letters to the Governors of all 50 states, asking to protect the people of their state by speaking with their Members of Congress and asking them to oppose the proposed

$880 Billion cuts to Medicaid.

Please click here to download VOR's Letter

If these cuts are enacted, governors will be the ones to bear the initial burden. Their state budgets, already strapped for funds for Medicaid services, will be severely reduced. Hospitals will become overcrowded. Many will be forced to close through lack of funds.

And we all know what will happen to DD Services...

We need you to join us, by reaching out to your governor's office to tell your story, and to tell how cutting Medicaid would affect your family, and your loved ones and your state.

Your governor's contact can be found here

Once on their website, look for information on how to contact them. It may be a phone number, or an email address, but most likely there will be an online form to fill out. You may or may not be able to attach VOR's letter, but feel free to use it as a guide to writing your own letter.

But please, reach out to your state office, and to the providers and administrators of the residential facilities that provide services for your loved ones, and ask them to speak to your governors, your members of the House of Representatives and Senate to demand that Congress:

MAKE NO CUTS TO MEDICAID!

Attacks on Medicaid Expansion Would Threaten Coverage for 20 Million People

By Laura Harker, Center for Budget and Policy Priorities, March 20, 2025

The House Republican budget would require deep cuts to Medicaid, and recent statements from House Energy and Commerce Committee Chair Brett Guthrie suggest the Affordable Care Act’s (ACA) Medicaid expansion to adults with low incomes — which covers more than 20 million people — will be a prime target. Cutting Medicaid by hundreds of billions of dollars and focusing many of those cuts on the Medicaid expansion would lead millions of people to become uninsured. Eliminating Medicaid expansion was a key goal of Republicans’ failed effort to repeal the ACA eight years ago, and Congress should once again reject efforts to undermine it.

Recent Republican proposals such as reducing the federal matching rate for Medicaid expansion, repealing the 2021 Rescue Plan’s incentive for new states to expand, or taking away Medicaid coverage from certain adult enrollees by imposing work requirements would leave expansion enrollees at risk. They could lose their coverage due to work requirements, or their state might drop their coverage due to a drastic increase in state costs. Twelve states have “poison pill laws” that would automatically end expansion coverage or require review of the coverage if the federal matching rate drops below 90 percent. In these states, expansion enrollees are at even greater risk.

Rep. Guthrie’s recent statement confirms that Republicans are eyeing proposals such as work requirements, a reduction in the federal matching rate, or a per capita cap on funding for the expansion group. This last option could shift between $72 billion and $190 billion in costs to states from 2026 to 2034, increasing the state costs of expansion by 41 to 108 percent and jeopardizing coverage for millions of people.

Forty states plus Washington, D.C. have adopted the Medicaid expansion, helping adults with low incomes become healthier and more financially secure. Health coverage through expansion improves people’s access to preventive and primary care, provides care for chronic illnesses, prevents premature deaths, and protects people from catastrophic out-of-pocket medical costs.

Having health coverage also makes it easier for adults to work or to look for a job. Considering that Medicaid supports work and that 9 out of 10 Medicaid adults are already working, caring for family, attending school, or are ill or disabled, work requirements are unnecessary and burdensome. Proposals to use work requirements as a way to take away Medicaid coverage from certain adults are just another way to undermine the Medicaid expansion.

Attacks on the Medicaid expansion are often based on false claims that covering adults with low incomes takes away care from groups traditionally eligible for Medicaid. In reality, Medicaid expansion supports better outcomes for all groups, including children, older adults, and people with disabilities.

Medicaid expansion has driven coverage gains for parents, which improves their access to care as well as the overall well-being of their children. Expansion has also driven coverage gains among people with disabilities. People with disabilities who receive Supplemental Security Income generally also qualify for Medicaid, but 2 out of 3 people with disabilities who participate in Medicaid qualify on another basis, meaning Medicaid expansion is an important path to coverage for those with low incomes.

Medicaid expansion also supports hospitals and other health care providers by reducing their uncompensated care costs and improving their operating margins, especially for rural and safety-net hospitals. If all states were to drop the Medicaid expansion in response to a decline in federal support, a recent analysis found that provider revenues would fall by $80 billion and uncompensated care costs would increase by $19 billion in 2026.

Continued

Related articles:

I am the face of Medicaid. Proposed cuts loom like dark clouds.

Letters from readers to the Washington Post.

Read the article here

Varying proposals for Medicaid funding all amount to cuts, just in different forms, experts say   

By Kimberfly Bonvissuto, McKnight's Senior Living, March 21, 2025

Read the article here

Republicans split on spending cuts, Medicaid as they seek path forward on Trump tax cuts

By David Morgan, Reuters, March 17, 2025

Read the article here

The Collateral Damage of Trump’s Firing Spree

By Lindsay Ellis, The Wall Street Journal, March 17, 2025

Read the article here

Senators Grill Oz on Medicaid Cuts and Medicare Changes

By Reed Abelson and Susanne Craig, The New York Times, March 14, 2025

In a hearing on Friday, senators pressed Dr. Mehmet Oz, the TV celebrity nominated to head Medicare and Medicaid, on Republican-led proposals that would significantly affect the health care coverage for nearly half of all Americans.

At his confirmation hearing before the Senate Finance Committee, Dr. Oz bantered with senators in a friendly atmosphere, joking about basketball and allegiances to college teams. He largely escaped tough questions from either side of the aisle, displaying his on-air charm as he deflected Democrats’ most pointed concerns about potentially radical changes in health coverage for not only those 65 and older but also for poor children.

Many senators seemed distracted by the fierce debate over the Republicans’ budget deal to avert a government shutdown, and they dashed in and out of Dr. Oz’s hearing. But he is poised to sail through the Senate for confirmation as the next administrator of the Centers for Medicare and Medicaid Services, an agency with $1.5 trillion in spending.

Senator Elizabeth Warren, Democrat of Massachusetts, made a big deal of his financial conflicts before the hearing. But at the session, she did not press him on those issues. Instead, she focused on his views about whether private Medicare plans are overcharging the government, an area where she and Dr. Oz seemed to agree on the need to tackle potential fraud and waste.

Throughout the hearing, he displayed a facile knowledge of a variety of relevant agency issues, although he repeatedly reverted to stock answers that he would need to study the topic at hand more.

Several lawmakers, mainly Democrats, tried to force Dr. Oz to express his views on the Trump administration’s goals to cut back on health care costs and agency budgets, but he repeatedly sidestepped those minefields.

“It is our patriotic duty to be healthy,” he told senators. “It costs a lot of money to take care of sick people who are sick because of lifestyle choices.”

This refrain is in line with the Make America Healthy Again movement championed by Robert F. Kennedy Jr., the new secretary of the Department of Health and Human Services, and Dr. Oz’s soon-to-be boss if he is confirmed.

Democrats seemed most frustrated by Dr. Oz’s stance toward Medicaid, the state-federal program that covers 72 million low-income Americans. “All my colleagues want to know, are you going to cut Medicaid?” asked Senator Maria Cantwell, Democrat of Washington.

But Dr. Oz, who has not spoken much about the program he would also oversee as head of the agency, did not answer directly. He said he did not know the details of the Republican budget discussions, in which lawmakers are looking at hundreds of billions of dollars in cuts that could result in people’s loss of coverage as it became more difficult to enroll and states had to shoulder more of the burden.

Read the full article here

Related articles:

CNBC - CMS Nominee Dr. Oz Won't Commit to Opposing Medicaid Cuts

NBC News - Dr. Oz Dodges Questions on Medicaid Cuts at Senate Confirmation Hearing

Executive Order Aiming To Close Ed Department Paves Way To Offload Special Education

By Michelle Diament, DisabilityScoop, March 21, 2025

President Donald Trump is directing his education secretary to move forward with dismantling the U.S. Department of Education, a step that advocates say would have serious implications for students with disabilities.

Trump signed an executive order Thursday calling for Secretary of Education Linda McMahon to take “all necessary steps to facilitate the closure of the Department of Education and return education authority to the states.” She is to do so while “ensuring the effective and uninterrupted delivery of services, programs, and benefits on which Americans rely,” the order states.

“If you look at the Pell grants, supposed to be a very good program, and Title I funding and resources for children with special disabilities and special needs, they’re going to be preserved in full and redistributed to various other agencies and departments that will take very good care of them,” Trump said before signing the executive order. “But beyond these core necessities, my administration will take all lawful steps to shut down the department.”

The Education Department was established by Congress and federal lawmakers would need to act in order to close the agency, but the administration is moving swiftly to weaken it.

The order comes little more than a week after the Education Department said it was cutting its workforce nearly in half in what McMahon described as a “first step” to shut down the agency. A significant number of the layoffs targeted the Education Department’s Office for Civil Rights, prompting major concerns about how the federal government will ensure that schools uphold disability rights and limiting recourse for students.

Advocates have warned that shuttering the Education Department could have an outsized impact on the nation’s 7.5 million special education students. The agency distributes billions in funding to states every year and oversees everything from early intervention for young children with disabilities to vocational rehabilitation in addition to ensuring that the civil rights of students with disabilities are protected.

“If the secretary moves forward to try to dismantle ED, every child with a disability stands to be harmed when federal funding is separated from key federal requirements, when federal oversight of discrimination in education is obliterated, and when investments in education research, technical assistance/training and data collection and transparency in outcomes for children no longer exist,” said Denise S. Marshall, CEO of the Council of Parent Attorneys and Advocates, or COPAA, a nonprofit that advocates for the rights of students with disabilities and their families. “There are many ways to change a structure, but the only way that can be successful is through careful planning. No evidence of that has been presented.”

McMahon has suggested that oversight of the Individuals with Disabilities Education Act be moved to the Department of Health and Human Services and the Education Department’s Office for Civil Rights be sent to the Department of Justice. However, the education secretary could not say what IDEA stands for and was short on specifics when asked who would enforce the special education law if the department is abolished.

“Dismantling the U.S. Department of Education is more than a policy shift — it will reverse five decades of progress for students with disabilities,” said Katy Neas, CEO of The Arc of the United States and a former deputy assistant secretary in the Education Department’s Office of Special Education and Rehabilitative Services. “While the right to a free appropriate public education for children with disabilities will remain under the federal Individuals with Disabilities Education Act, states will struggle to deliver on its promise without federal technical assistance, oversight and enforcement.”

Continued

Ed Department Cuts May Leave Students With Disabilities ‘Little To No Recourse’

By Michelle Diament, Disbility Scoop, March 18, 2025

Mass firings at the U.S. Department of Education will severely compromise families’ ability to ensure that the rights of their children with disabilities are upheld, advocates warn.

At least 243 staffers, including many investigators, at the department’s Office for Civil Rights are being terminated as part of an agency-wide “reduction in force” announced last week. In addition, the Education Department is shuttering seven of 12 regional branches of the civil rights office.

The office has long served as a key resource for families who can file complaints if their children with disabilities face discrimination in schools. Investigators with the civil rights office address issues related to everything from accessibility of buildings, classrooms and playgrounds to exclusionary discipline, testing accommodations, harassment and much more.

“Terminating hundreds of staff from OCR and closing regional offices across the country will have devastating impacts on disability discrimination complaint investigations,” said Jacqueline Rodriguez, CEO of the National Center for Learning Disabilities. “Families of children with disabilities are now left with little to no recourse should their or their student’s rights be infringed upon.”

The level of firings has left the Office for Civil Rights “effectively a shell of itself,” according to Catherine Lhamon who led the office under the Biden and Obama administrations.

“When I left on Jan. 20, staff were handling about 50 cases per person and that was untenable and the caseload has increased since that time,” Lhamon said, predicting that caseloads could now rise to 120 per person. “There’s no civil rights investigator anywhere who could effectively investigate and resolve that high a number of cases.”

Now, advocates are suing the Education Department, accusing the agency of decimating and sabotaging the ability of the civil rights office to investigate and process claims.

“Families who have filed complaints with the reasonable expectation that OCR will follow its legal mandates and longstanding practice of investigating and processing their cases have been left without any information about the status of their complaints or the prospect of obtaining relief,” states the complaint filed in the U.S. District Court in Washington. “This includes families of students who urgently need accommodations or are seeking a resolution that would allow them to return to the classroom.”

As a result of recent changes, the Office for Civil Rights has postponed scheduled meetings and mediations without explanation and failed to provide updates to complainants, all while prioritizing politically motivated investigations including ones targeting programs supporting students of color and those who identify as LGBTQ+, the suit indicates.

The lawsuit was filed on behalf of two parents with pending claims before the civil rights office and the Council of Parent Attorneys and Advocates, or COPAA, a nonprofit that advocates for the rights of students with disabilities and their families, and its members.

“Failing to investigate civil rights complaints is a betrayal of students and families across the country, all of whom deserve justice,” said Shakti Belway, executive director of the National Center for Youth Law, which filed the suit on behalf of the parents and COPAA. “To abandon thousands of claims, while our schools are seeing increased bullying, harassment, and discrimination, not only goes against the very mission of the Department of Education, it sends a chilling message that schools don’t need to foster an environment in which every student is safe and welcome. This only undermines student safety, while emboldening those who may not have students’ best interests at heart.”

Through the lawsuit, the advocates want to compel the Education Department to restore the civil rights office’s ability to process complaints and they are asking the court to monitor the office’s work.

Education Department spokesperson Madi Biedermann did not respond to a request for comment about the lawsuit, but previously indicated that “we are confident that the dedicated staff of OCR will deliver on its statutory responsibilities.”

Continued

Private equity ‘gobbling’ up care facilities for people with disabilities

Rising PE ownership of care facilities has led to abuse, neglect and even deaths, new report finds

By O. Rose Broderick, STAT, March 18 2025

Private equity firms are acquiring facilities that care for people with intellectual or developmental disabilities at an alarming rate, according to a new report released Tuesday.

The care industry for this population has been historically owned and operated by nonprofits and faith-based institutions. However, between 2013 and 2023, private equity firms made over 1,000 acquisitions of disability and elder care providers — a likely undercount, according to the report published by the Private Equity Stakeholder Project, a nonprofit watchdog focused on the growing impact of the private equity industry.

While private equity ownership of nursing homes and autism care centers have been well scrutinized, their influence on care for people with disabilities has so far not attracted critical attention from the media. The report details the abuse, neglect and even deaths of people with IDD under the care of private equity-owned providers — and how their influence upon this population’s health care is growing. 

While the hidden structures of private equity firms often obscure financials and lived realities from the public, the consequences of that influence could be significant. Private equity firms have a track record of abuse and neglect in many health care settings, and people with IDD routinely face significant health care challenges, such as higher rates of diabetes, mental illness, and other chronic conditions. 

“They’re happening in the places where people live and they’re happening in a way that can impact the whole of a person’s life, not just going to unemployment or seeing a doctor when you’re sick,” said Eileen O’Grady, the report’s author. “It’s your whole life, where you live, where you eat, who you talk to everyday. The level of potential harm is way amplified in those settings.

A confluence of factors that played out over the last decade has made the care industry for people with IDD particularly attractive for private equity firms. In recent decades, the disability community has pushed for their care to be located in integrated community settings, rather than in institutions such as intermediate care facilities. Home care has boomed, which led to scores of small-scale and regionally based facilities and nonprofits. As care has improved, there has been an increased demand for services as life expectancy jumped for people with IDD. More than 710,000 individuals were on the wait list for Medicaid home- and community-based care in 2024, according to a KFF study.

However, the industry has struggled in recent years to attract enough workers to meet this demand. This “highly-fragmented landscape” made it easy for private equity firms such as Alpine Investors and Centerbridge Partners to swoop in. “As private equity-owned platforms have gobbled up small regional providers and consolidated them, a number of large private equity-owned companies have emerged with tens of thousands of employees at numerous locations across the United States,” the report noted. Alpine owns Team Services Group, which employs about 100,000 people across 11 states while Centerbridge has ownership in Help at Home and Sevita Health, which together employ a similar number of people across nearly 40 states.

The resulting care and services have started to resemble the harms and struggles of institutional care that the disability community worked hard to distance itself from. Staffing has been reduced, employees are underpaid, services such as therapy are being cut, and many living conditions are unsafe or unsanitary, according to the new report. 

Continued

Autism Awareness Still Has a Long Way To Go: Opinion

By Mark Kendall (California Chair of the National Council on Severe Autism), Newsweek, March 20, 2025

From Hollywood to Silicon Valley to the halls of Congress, autism in many ways is riding a growing wave of awareness and open conversation. April's Autism Acceptance Month will likely showcase that awareness—and its limits.

Even with its increased acceptance of autism, our society still struggles to acknowledge the daily realities of people with the most profound expressions of this complex disability. By that measure, media representation, government bodies, and even the scientific community are falling short.

More than 25 percent of individuals with autism experience its most severe forms. Their daily realities can include profound communication limitations, self-injurious behaviors, seizures, catatonia, sleep problems, and other ongoing medical and behavioral challenges that usually require around-the-clock assistance.

You rarely see these aspects of autism portrayed in news reports, social media, or the entertainment industry. The recent backlash over a bafflingly incomplete USA Today explainer on autism is just one example.

As the father of a young adult who is nonverbal and has severe autism, I'm acutely aware of this community's invisibility.

Why so much exclusion in an age of "acceptance?"

People with severe autism typically are unable to engage in the self-advocacy (and, increasingly, self-diagnosis) celebrated by many influencers and gatekeepers of the public conversation, whether on TikTok, TV, or online news outlets.

Of course, self-advocacy is highly important, but when we declare it the only legitimate form of discourse around disability, those who can't take part in it are left on the margins. And with the autism spectrum now defined in such a wide manner, it's absurd to suggest that anyone—whether they have the disorder or not—can represent everyone with autism in the public square.

More and more, the severe autism population is simply left out of the discussion. When parents, caregivers, and advocates speak up, they too often are ostracized and subjected to elaborate language policing.

Even as many people with severe autism confront intense daily challenges, federal government agencies for years have showed little sense of urgency to help this unseen population. In the meantime, ideological imperatives became more and more central to the conversation.

With the recent reauthorization of the Autism CARES Act, advocates had hoped for a major revamp of federal autism policy to focus on those with the greatest needs. Instead, they had to settle for the incremental step of new language about reflecting "the entire population of individuals with autism spectrum disorder."

While it's true officials in the new Trump administration are talking more openly about autism as a national public health issue, their reported interest in widely researched and debunked claims of vaccine-autism ties risks another setback in prioritizing new research paths.

People with severe autism already face immense barriers in areas ranging from the chronic shortage of direct support professionals to obtaining suitable medical and dental care. The challenges will only intensify over time as family caregivers like myself inevitably age and die.

A just society should include and value every person with autism, wherever they fall on the spectrum. That requires openly discussing—and effectively addressing—the needs of people with severe autism. The present reality is inclusion for some and exclusion for others. Whatever the month, that's simply unacceptable.

Read the full letter here

Deep brain stimulation may reduce severe self-injurious behavior in children with autism spectrum disorder

By Rhiannon Bugno, Elsevier via Medical Express, March 20, 2025

Severe self-injurious behavior in children with autism spectrum disorder (ASD) poses a significant risk of permanent physical injury. Not all children respond to behavioral therapies. Findings from a pilot trial show that deep brain stimulation (DBS) of the nucleus accumbens (NAc), the reward-related region of the brain, in children with severe self-injurious behavior and ASD is relatively safe and feasible and may have notable benefits.

The work is published in the journal Biological Psychiatry.

John Krystal, MD, Editor of Biological Psychiatry, says, "Repetitive self-injurious behavior is a terribly dangerous and potentially life-threatening condition for which there are limited treatment options. This report describes a novel neurosurgical approach to treatment involving DBS of a brain reward center. While the findings are extremely preliminary, they suggest that stimulation of this reward-related region of the brain may reduce self-injurious behavior, justifying further study."

Lead investigator George M. Ibrahim, MD, Ph.D., Division of Neurosurgery, Department of Surgery and Program in Neuroscience and Mental Health, The Hospital for Sick Children; Institute of Biomedical Engineering; Institute of Medical Science, University of Toronto, notes, "Children with severe self-injurious behavior represent an exquisitely vulnerable population, often with limited treatment options.

"Our extensive experience with pediatric DBS and brain network mapping provided an opportunity to develop the evidence base for a novel therapy for affected children. In this study, we showed that DBS targeting the NAc is relatively safe and may improve quality of life."

Continued

Download the pdf here

Medicaid Roundtable: Connecticut is Confronting A Health Care Crisis  

By Karla Ciaglo, CT News Junkie, March 18, 2025

With Medicaid facing unprecedented cuts at the federal level, Connecticut is on the verge of a healthcare crisis that could devastate families, strain hospitals, and upend community health centers already struggling to stay afloat, officials said Monday.

“Medicaid is often thought of as a program for people who don’t work, but that’s simply not true,” said Tiffany Donelson, CEO of the Connecticut Health Foundation. “Sixty-six percent of Medicaid recipients are employed. They’re childcare workers, grocery store clerks, and home health aides. When we cut Medicaid, we are cutting the foundation that supports the workforce Connecticut depends on.”

Far from being a program that affects only the most economically disadvantaged, Medicaid serves 1.2 million Connecticut residents – a third of the state’s population – including low-income families, people with disabilities, seniors in nursing homes, and even middle-class individuals who lack employer-sponsored insurance.

“There is not a single district in Connecticut without Medicaid recipients,” Donelson continued. “Even in our wealthiest towns, people depend on this program. Yet we are watching a situation unfold that could dismantle that support overnight.”

Connecticut Comptroller Sean Scanlon said that Medicaid is woven into the financial structure of the state’s healthcare system.

“Every hospital in Connecticut could not operate as it does without Medicaid,” he said. “Our nursing homes, our intermediate care facilities, all depend on it. If these cuts go through, it will devastate our healthcare infrastructure.”

Connecticut’s Medicaid system had been facing challenges long before federal cuts were proposed. Health centers, which provide care for more than 440,000 low-income residents, have already resorted to depleting cash reserves and freezing hiring just to remain operational. Last week, Connecticut’s Federally Qualified Health Centers filed a Declaratory Ruling Request with the Department of Social Services, arguing that the agency has failed to comply with both state and federal laws requiring reimbursement rates to reflect actual costs.

Sean Frick, CEO of the Community Health Center Association of Connecticut, addressed the strain that health centers have been under. 

“We are already being forced to cut back on services due to underfunding,” Frick said. “If Medicaid funding is reduced even further, it will devastate healthcare access for the most vulnerable in our state.”

State leaders, including Senate President Martin Looney, D-New Haven, discussed the fiscal constraints Connecticut is already facing. “We’re already at our spending cap,” Looney said. “Even a small cut in federal Medicaid reimbursement could throw our state budget into chaos.”

The effects of Medicaid cuts will be widespread, with hospitals, nursing homes, and community health centers uncertain about the future. Many Connecticut nursing homes depend on Medicaid funding, and further reductions could force closures, leaving thousands of elderly and disabled residents without care.  

Read the full article here

'Unfathomable conflict of interest': WFAA investigation spurs Texas lawmaker’s fight to stop caregivers from cashing in on life insurance

By Tanya Eiserer, WFAA News, March 18, 2025

A state lawmaker is renewing efforts to close loopholes in the care of intellectually disabled individuals following WFAA’s Disabled in Danger investigation.

State Rep. Chris Turner reintroduced legislation targeting gaps exposed by the investigation, which highlighted the vulnerabilities of disabled individuals in group home facilities.

His latest proposal, heard Tuesday in the House Human Services Committee, seeks to prohibit non-family caregivers from collecting life insurance benefits from their clients after death. The push for reform stems from WFAA’s 2019 investigation into the death of Leroy Anderson, an intellectually disabled man whose group homeowner—rather than his family—stood to collect his $50,000 life insurance payout.

“It should be common sense, and most people I’ve discussed this issue with are shocked to learn that this practice is allowed. I was shocked as well until I learned the story of Leroy Anderson and his uncle, David Hunt,” Turner told the committee.

“What’s worse is that it was completely legal,” Turner said. “This is an unfathomable conflict of interest in a facility entrusted with the lives of extremely vulnerable individuals to be eligible to be the beneficiary of their life insurance policy.”

In addition to group homes, the legislation would also apply to assisted living facilities, intermediate care homes and state-supported living centers. The bill would ensure that only family members or legally designated beneficiaries can receive life insurance payouts in such cases.

Members of the Human Services Committee expressed strong support for the bill.

Continued

Bill addresses decision-making for Ohioans with developmental disabilities

By Ava Boldizar, NBC 4 News, March 14, 2025

A bill in the Ohio Statehouse seeks to establish a presumption that all adults with developmental disabilities are capable of making their own decisions unless otherwise determined by a court. 

Senate Bill 35, sponsored by Sens. Michele Reynolds (R-Franklin County) and Jerry Cirino (R-Kirtland), was introduced in January. Along with declaring that adults with developmental disabilities should be presumed capable of managing their affairs, the bill would legally establish a “less restrictive” alternative to guardianship, called “supported decision making” (SDM), according to Reynolds. 

SDM allows individuals with developmental disabilities to retain their legal decision making authority while receiving support from chosen advisers who can help them understand, make and communicate their decisions. The bill would allow the advisors to be formally chosen through a written plan, or chosen informally. 

In a guardianship, a family member or other entity is in charge of an individual’s affairs and ultimately makes decisions for them, when a court finds that person is incapable of making their own decisions due to a mental disability, according to the nonprofit Disability Rights Ohio.

“This legislation addresses a significant need in our current system,” Reynolds said at the bill’s first hearing in February. “Many adults with developmental disabilities find that full guardianship is more restrictive than necessary, while complete independence may not provide adequate support.”

Under the bill, entering into a SDM plan could not be used as grounds for a court to find that an adult is incapable of managing their own affairs. Adults with developmental disabilities who use a SDM plan would be allowed to act independently of their advisors and end the plan at any time. The bill additionally clarifies that adults with developmental disabilities could not be forced into a SDM plan. 

Reynolds said that the approach recognizes that “disability exists on a spectrum” and that many adults with developmental disabilities are capable of making their own decisions. Twenty-three states have enacted similar legislation, according to the lawmakers.

Caroline Lahrmann *, an Ohio mother, testified against the budget bill (HB 96) saying those with developmental disabilities can already have friends and family assist them with decision making without new legislation. Harris Capps *, a parent and legal guardian, echoed the same sentiment, calling sections of the bill addressing SDM “unnecessary” and “redundant.”

“SDM as policy could result in a degradation of Ohio’s guardianship system while providing more opportunities for frivolous lawsuits,” Capps said.

Current Ohio law requires those with developmental disabilities to be able to manage their financial affairs if they are able, participate in decisions that affect their lives, and select a parent or advocate to act on their behalf.

Cirino introduced a similar bill in the last General Assembly that did not pass before the end of the legislative session. SB 35 was assigned to the Senate Judiciary Committee and currently has one Republican cosponsor. 

Read the full article here

* Note: Caroline Lahrman and Harris Capps are both former Presidents of VOR.

Virginia - ‘Not on our watch’: McClellan stresses congressional fight to defend Medicaid from potential cuts

By Charlotte Rene Woods, Virginia Mercury, March 19. 2025

With over one million people in Virginia on Medicaid, about 630,000 of those could stand to lose coverage should Republicans in Congress cut federal funding, Democratic state lawmakers have stressed. U.S. Rep. Jennifer McClellan, D-Richmond, added her voice to the chorus of warnings at a press conference at the statehouse on Tuesday afternoon.

“We are here to say, ‘not on our watch and not without a fight,’” McClellan said during her visit to Virginia’s Capitol.

She was joined by state Sen. Ghazala Hashmi, D-Chesterfield and Del. Mark Sickles, D-Fairfax, along with central Virginia residents who shared their experiences with Medicaid as recipients or healthcare providers.

Though it doesn’t name Medicaid specifically, the U.S. House Republican budget plan adopted in February would direct the House Energy and Commerce Committee — which McClellan serves on in the minority party — to find ways to cut the deficit by $880 billion over the next decade. That committee has jurisdiction over Medicaid, Medicare and the Children’s Health Insurance Program. 

“(Republican’s budget plan) doesn’t say the word ‘Medicaid’ but you cannot get to $880 billion… without cutting Medicaid,” McClellan said. 

Continued

Idaho - Little signs Medicaid reform bill, shifting program to managed care and creating work requirements

By Laura Guido, The Idaho Press, via NCW Life, March 19, 2025

Idaho Gov. Brad Little on Wednesday signed a bill that may cause significant changes to Idaho’s Medicaid program.

House Bill 345 directs the Idaho Department of Health and Welfare to pursue a number of changes to Medicaid through requests to the federal government, which include shifting its administration to a private, third-party managed care organization, or MCO.

The bill would also require the state health department to pursue a waiver, which is a way to change how the state administers the federal program, that would create work requirements for the Medicaid expansion population.

Medicaid expansion was approved in 2018 to provide broaden coverage to those who fell in the gap between earning too much for traditional Medicaid and not earning enough to qualify for credits to purchase private insurance through the state healthcare exchange.

"We want Idahoans to become as self-sufficient as possible,” Little said in an emailed statement. “House Bill 345 reinforces that goal while reasonably reeling in Medicaid spending so taxpayers are not overly burdened by this program in the outyears. House Bill 345 is a huge improvement over a previous version that would have reversed voter-approved Medicaid Expansion in 2018. The voters spoke loudly in 2018 with their votes, and as elected leaders we must continue to respect that. I am pleased House Bill 345 improves the Medicaid program without rejecting the will of the voters on Medicaid Expansion.”

There were two other bills proposed this year that would have fully repealed Medicaid expansion in an effort to contain costs.

Rep. Jordan Redman, R-Coeur d’Alene, sponsored HB 345 as well as the earlier bill, HB 138 — which would have created so many strict conditions that it would have guaranteed a repeal of expansion. 

Redman worked with Senate Health and Welfare Committee Chair Julie VanOrden, R-Pingree, on HB 345 to address some of the concerns on the previous legislation.

HB 345 includes changes such as requiring participants to pay premiums and co-pays, ending the practice of automatically renewing eligibility based on information the department has from other programs, and giving the health department director broad authority to start cutting costs in the event the federal government reduces its payment match on expansion while the Legislature is out of session.

Continued

Republicans block bill to cover budget shortfall threatening Arizona’s disability services 

By Manuelita Beck, ABC 15 News, March 19, 2025

State funding for Arizona’s crucial disability services runs out next month, but a fix remains out of reach.

Democrats in the Arizona House tried on Tuesday afternoon to bring House Bill 2816 up for a vote. The bill would cover the Division of Developmental Disabilities' shortfall, but Republicans blocked the vote.

“My members want to get to work,” said Majority Leader Michael Carbone, R-District 25. “We have bills. We want to get into Committee of the Whole.”

The House then moved on to other business, discussing other legislation and voting on other bills.

Governor Katie Hobbs' spokesperson Christian Slater said in a statement that Republican lawmakers are holding Arizonans with disabilities “hostage to their political games,” adding that it’s time for Republicans to pass a bill to fund DDD instead of forcing through drastic cuts to the program.

“Their failure to act is both inhumane and fiscally irresponsible,” he said. “They’re more focused on scoring cheap political points than delivering services for some of our state’s most vulnerable.”

State Rep. David Livingston, R-District 28, told ABC15 that the Legislature would not pass standalone legislation known as a supplemental bill without changes to the program, saying mismanagement led to the budget hole.

“There is no way in hell that we're passing a supplemental with just the money and no reforms, because the mismanagement caused this,” said Livingston, who leads the House Appropriations panel. “So the only way we can pass a supplemental is with the House and Senate agreeing on reforms that the governor signed.”

The other option, he said, is to work the reforms and supplemental funding into the Legislature’s main budget package.

However, it’s not clear if a budget deal will be reached before DDD runs out of money next month.

Continued

Pennsylvania - This year, Harrisburg must lock in recent improvements to system of disability care

By the Editorial Board, Pittsburgh Post-Gazette, March 21, 2025

Last year’s moves from the Shapiro administration to stabilize the state’s system of care for people with intellectual disabilities and autism (ID/A) have borne fruit. For the first time in several years, Pennsylvania’s wait list for essential services — services it is legally and morally obligated to provide — has shortened, in part due to service providers being able to hire more staff at more reasonable wages.

Yet one structural solution remains elusive: The Medicaid reimbursement rates paid by the state for direct support professionals (DSP) should be indexed to inflation. This would ensure they are no longer subject to opaque state boards or a legislature where people with ID/A have to compete with corporate lobbyists for attention. As one of this issue’s most energetic advocates, Rep. Dan Miller, D-Mt. Lebanon, prepares to leave the legislature, there must be urgency to fix the DSP rate problem for good.

Last year, providers paid an average wage of $17.85, which is a few dollars per house more than what ODP reimburses. The nonprofits foot the bill for the overage. It’s better than it was a few years ago, when DSP wages compared unfavorably with some fast-food wages, but it’s still not enough to support a sustainable workforce. Annual turnover is over 30%.

There’s no reason to keep these reimbursement rates dependent on an every-three-years bureaucratic review, or to the whims of the legislature, when they can simply be tied to an objective measurement of the cost of living. Passing such a bill would honor Mr. Miller’s years of commitment to the cause of people with ID/A, and would ensure the system doesn’t backslide, resulting in a cascading failure of our responsibility to society’s most vulnerable members.

Read the full editorial here

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VOR SUPPORTS:

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)

To 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.

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. 

VOR OPPOSES:

To date, no bills have been entered that VOR outwardly opposes, though we understand that the budget process is about to begin, and we expressly oppose any attempt to cut $880 billion from Medicaid should that be proposed.