May 9, 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.

\May 12-14, 2025

VOR's Annual Legislative Initiative

Washington, D.C.

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There's been a lot happening this week.

The good news? The House has decided not to cut Medicaid by cutting the FMAP.

The bad news? They did it because they knew they didn't have the votes, not because they realized it would hurt people with disabiliities, intellectual disabilities and autism, severe mental illnesses, or the aging community.

The other bad news? They have other ideas about how to cut Medicaid that could be just as harmful to our families and our loved ones as cutting the FMAP.

Read on:

Johnson Rules Out an Aggressive Plan to Cut Medicaid as G.O.P. Moderates Waver

By Catie Edmondson and Margot Sanger-Katz, The New York Time, May 7, 2025

Speaker Mike Johnson has dropped one of the most aggressive options the G.O.P. was considering to cut Medicaid costs to help pay for President Trump’s domestic agenda, bowing to pressure from politically vulnerable Republicans and underscoring the deep party divisions imperiling the plan.

Leaving his office on Tuesday night after meeting with a group of more moderate members, Mr. Johnson told reporters that House Republicans had ruled out lowering the amount the federal government pays states to care for working-age adults who became eligible for the program through the Affordable Care Act’s Medicaid expansion.

Mr. Johnson also suggested he was leaning against another way of reducing spending on Medicaid, by changing the way the federal government pays states — currently by providing a percentage of beneficiaries’ medical bills — to a flat fee per person.

“I think we’re ruling that out as well, but stay tuned,” the speaker said.

The retreat was an acknowledgment that many House Republicans viewed the ideas — both of which would create large state budget shortfalls — as politically toxic. It also underscored how difficult it will be for Mr. Johnson’s conference to find Medicaid cuts that hit the spending targets Republicans set for themselves and also win enough votes to pass.

Continued

CBO: Millions could lose coverage if GOP pulls back on Medicaid expansion

By Ben Leonard, Politico, May 7, 2025

Congress’ nonpartisan scorekeeper projects that millions of Americans would lose health coverage under options currently being considered by Republicans to help pay for President Donald Trump’s “big, beautiful bill.”

The new Congressional Budget Office estimates were requested by Sen. Ron Wyden of Oregon and Rep. Frank Pallone of New Jersey, the top Democrats on the Senate Finance Committee and the House Energy and Commerce Committee, respectively. The options weighed by the CBO reflect policies Democrats say Republicans would pursue — not necessarily the exact options they might enact, even if similar.

The findings could, however, exacerbate concerns among moderate Republicans about making drastic changes to Medicaid as a megabill offset.

The CBO estimates that a controversial policy that would reduce the federal share of payments in the joint-state federal program in states that have expanded Medicaid under the Affordable Care Act would lead to 5.5 million people losing coverage. House Speaker Mike Johnson said Tuesday night that Republicans were no longer considering such a move.

But the scorekeeper also estimated that capping federal spending in states that have expanded Medicaid — which Johnson didn’t entirely rule out Tuesday — would lead to 3.3 million people being booted off their coverage.

Repealing a Biden-era rule aimed at lessening barriers to Medicaid enrollment would lead to 2.3 million people losing benefits, per the CBO. And limiting the taxes that states levy on doctors and hospitals to pay for their share of Medicaid expenditures would lead to 8.6 million people losing Medicaid coverage.

Continued

Download a copy of the CBO score estimates here

The Biggest Medicaid Cut Left for House Republicans Would Hit Red States Hardest

By Sarah Kliff, Margot Sanger-Katz, and Alicia Pariapiano, The New York Times, May 9, 2025

House Speaker Mike Johnson said Tuesday that major cuts to the Affordable Care Act’s Medicaid expansion were off the table. Now, the largest cut left among their whittled-down options would disproportionately hurt states that supported Mr. Trump in the 2024 election.

Republicans have also been studying several other Medicaid changes for their budget bill, and a final package will probably include some of the smaller adjustments. But they have considered only two major policy pathways that can deliver the bulk of the $880 billion in spending cuts that the House committee overseeing Medicaid has been charged with finding.

One policy would significantly dial back funding for the Obamacare Medicaid expansion, which the Congressional Budget Office estimated Wednesday would save $710 billion over a decade. Some of the deepest cuts would be felt by rich, Democratic-led states. This was the option Mr. Johnson ruled out for now after meeting with moderate Republican members this week.

The remaining big cut on the table, limiting the way states use a tax loophole to increase federal spending on Medicaid, would save $668 billion, mostly by reducing Medicaid spending in poorer, Southern states.

Whichever states get hit hardest would face big budget shortfalls, and to compensate some could drop Medicaid’s health insurance coverage for some of their lower-income adults, cut hospital payments, or cut other government priorities.

The final package probably needs one of the two big cuts to achieve Republicans’ budget goals.

Continued

G.O.P. Targets a Medicaid Loophole Used by 49 States to Grab Federal Money

By Margot Sanger-Katz and Sarah Kliff, The New York Times, May 6, 2023

In 1989, New Hampshire’s Republican governor, Judd Gregg, had a gaping budget hole he didn’t know how to fill. His health secretary came up with a solution: a tax maneuver he’d learned through the grapevine that would force Washington to send the state millions in extra Medicaid funds.

It was called a Medicaid provider tax, and New Hampshire was among the first states to try it. New Hampshire taxed its hospitals and returned dollars to them as higher payments for Medicaid patients’ care. On paper, the tax inflated the state’s Medicaid spending, allowing it to collect more matching funds from the federal government.

“It was a way of the state basically gaming the federal government, for lack of a better term,” Mr. Gregg said recently.

What started as creative budgeting in New England has, over four decades, snowballed into a mainstay of financing Medicaid, the insurance program for the poor that covers 72 million Americans. Every state but Alaska has at least one such tax. In some states, provider taxes and related payments bring in more than a third of overall federal funding for the program.

Long after these taxes have become entrenched, congressional Republicans are now considering curtailing or ending them as one way to achieve the steep federal spending reductions proposed in the House budget. If they did, it would save the federal government about $600 billion over the next decade, a large chunk of the $880 billion in cuts that the House committee that oversees Medicaid has been charged with finding.

The change could hit some Republican-led states the hardest, a recent analysis shows, because their Medicaid budgets tend to be more reliant on the medical provider tax strategy.

The federal government typically spends a larger share in poorer states, which tend to be in the South, and many of the states that stand to lose the most from the policy are governed by Republicans.

Because there are no precise federal estimates of the tax’s effects, a team of researchers at The Hilltop Institute at the University of Maryland-Baltimore County pieced together data from various sources to provide rough calculations about how much money the taxes are currently generating for states.

Using conservative assumptions, the analysis found that the change could mean a budget hole of at least $2.7 billion for South Carolina next year — about a third of what the Medicaid program spent there last year. In Mississippi, where the Medicaid program also relies heavily on provider taxes, the state could lose about $2.1 billion in federal funds, roughly 37 percent of what the state typically gets from the federal government.

Read the full article here

Seeking Spending Cuts, GOP Lawmakers Target a Tax Hospitals Love To Pay

By Phil Galewitz, KFF Health News, May 8, 2025

On the eastern plains of Colorado, in a county of less than 6,000 people, Lincoln Health runs the only hospital within a 75-minute drive. The facility struggles financially, given its small size and the area’s tiny population.

But for over a decade, the Hugo, Colorado-based health system has remained afloat partially thanks to a surprising source: special taxes on the state’s hospitals.

The taxes Lincoln pays help cover the state’s Medicaid costs and — because the federal government matches a portion of what states spend on Medicaid — enable Colorado to claim more federal money. That generally leads to more dollars for the hospital. The tax proceeds also have helped Colorado expand Medicaid under the Affordable Care Act to cover 400,000 more low-income adults, significantly reducing the number of people showing up at hospital doors without insurance.

Last year, Lincoln paid $500,000 in provider taxes but netted more than $3.6 million extra from Medicaid, accounting for about 15% of its budget, said Lincoln CEO Kevin Stansbury.

“These dollars allow me to care for patients who are enrolled in Medicaid and to break even rather than lose money,” he said. “Without them, it would significantly impact our ability to survive.”

Every state except Alaska uses at least one provider tax to boost its federal Medicaid dollars.

But Republicans who control Congress are looking for potential cuts in the nearly $900 billion Medicaid program to help fund an extension of President Donald Trump’s tax cuts — and have sought to portray provider taxes as malicious, sometimes even deriding them as “money laundering.” Lawmakers say they may curtail or eliminate provider taxes as part of legislation to enact Trump’s domestic agenda.

“It’s infuriating,” Stansbury said.

Medicaid and the closely related Children’s Health Insurance Program together cover roughly 79 million low-income and disabled people and are jointly financed by states and the federal government.

Continued

5 Key Facts About Medicaid and Provider Taxes

By Alice Burns, Elizabeth Hinton, Elizabeth Williams, and Robin Rudowitz, KFF, March 26, 2025

To meet House budget resolution requirements, Congress will need to make major cuts to federal spending on Medicaid. An option under consideration is to limit the use of state taxes on providers, which could save hundreds of billions of dollars according to the Congressional Budget Office (CBO). Medicaid is jointly financed by the federal government and the states, with the federal government paying close to 70% of total costs in fiscal year (FY) 2023. States are permitted to finance the non-federal share of Medicaid spending through multiple sources, including state general funds, health-care related taxes (referred to as “provider taxes” throughout this brief), and local government funds. All states except for Alaska finance some of the state costs with taxes on health care providers, which may be imposed as a percentage of provider revenues or using an alternative formula such as a flat tax on the number of facility beds or inpatient days. The most common provider taxes are levied on nursing facilities (46 states) and hospitals (45 states).

1. All states except for Alaska use provider taxes to help finance the state share of Medicaid spending.

2. Federal rules set limits on how states can use provider taxes.

3. Provider taxes are most common for institutional providers.

Provider taxes fall on a wide range of provider types but are most common for institutional providers including nursing facilities (46 states), hospitals (45 states), and intermediate care facilities for people with intellectual or developmental disabilities.

4. Provider tax revenues are most likely to be near the safe harbor limit for long-term care providers.

5. Further limits on provider taxes are likely to reduce Medicaid spending, coverage, and payment rates.

Read the full article here

Several VOR members have expressed concerns about their loved ones who are concurrently diagnosed with both autism and severe mental illnesses. This is a particularly underserved population, as the IDD/Autism services are not trained to deal with these mental illnesses, and the services that treat people with mental illnesses are not trained to deal with people with autism.

The result is often extended hospital stays, in psychiatric wards. Since few private providers offer services for this population., once discharged their only options are family home (if that's even a possibility), homelessness, or prison.

As a result of the plight of these families, we have become all the mord concerned about this part of our health system, and how it will affect our loved ones' futures.

VOR is considering forming a group of families of people with these dual diagnoses. If you would be interested in participating, please contact us at info@vor.net with the email subject heading "Dual Diagnosis".

Medicaid payments barely keep hospital mental health units afloat. Federal cuts could sink them

By Tony Leys, Shots Health News from NPR, May 8, 2025

SPENCER, Iowa — This town's hospital is a holdout on behalf of people going through mental health crises. The facility's leaders have pledged not to shutter their inpatient psychiatric unit, as dozens of other U.S. hospitals have.

Keeping that promise could soon get tougher if Congress slashes Medicaid funding. The joint federal-state health insurance covers an unusually large share of mental health patients, and hospital industry leaders say spending cuts could accelerate a decades-long wave of psychiatric unit closures.

At least eight other Iowa hospitals have stopped offering inpatient mental health care since 2007, forcing people in crisis to seek help at distant facilities. Spencer Hospital is one of the smallest in Iowa still offering the service.

CEO Brenda Tiefenthaler said 40% of her hospital's psychiatric inpatients are covered by Medicaid, compared with about 12% of all inpatients. An additional 10% of the hospital's psychiatric inpatients are uninsured. National experts say such disparities are common.

Tiefenthaler vows to keep her nonprofit hospital's 14-bed psychiatric unit open, even though it loses $2 million per year. That's a significant loss for an organization with an overall annual budget of about $120 million. But the people who use the psychiatric unit need medical care, "just like people who have chest pains," Tiefenthaler said.

Medicaid covers health care for about 72 million Americans with low incomes or disabilities. Tiefenthaler predicts that if some of them are kicked off the program and left without insurance coverage, more people will delay treatment for mental health problems until their lives spin out of control.

"Then they're going to enter through the emergency room when they're in a crisis," she said. "That's not really a solution to what we have going on in our country."

The U.S. already faces a deep shortage of inpatient mental health services, many of which were reduced or eliminated by private hospitals and public institutions, said Jennifer Snow, director of government relations and policy for the National Alliance on Mental Illness. At the same time, the number of people experiencing mental health problems has climbed.

"I don't even want to think about how much worse it could get," she said.

The American Hospital Association estimates that nearly 100 U.S. hospitals have shuttered their inpatient mental health services in the past decade.

Medicaid generally pays hospitals lower rates for services than they receive from private insurance or Medicare, the federal program that mostly covers people 65 or older. And Medicaid recipients are particularly likely to need mental health care. More than a third of nonelderly Medicaid enrollees have some sort of mental illness, according to a report from KFF, a nonprofit health policy organization that includes KFF Health News. Iowa has the highest rate of mental illness among nonelderly Medicaid recipients, at 51%.

Read the full article here

In a broken mental health system, a tiny jail cell becomes the institution of last resort

By Katheryn Houghton, KPVI News, May 3, 2025

When someone accused of a crime in this small northwestern Montana town needs mental health care, chances are they’ll be locked in a basement jail cell the size of a walk-in closet.

Prisoners, some held in this isolation cell for months, have scratched initials and the phrase “love hurts” into the metal door’s brown paint. Their pacing has worn a path into the cement floor. Many are held in a sort of limbo, not convicted of a crime but not stable enough to be released. They sleep on a narrow cot next to a toilet. The only view is a fluorescent-lit hallway visible through a small window in the door.

Lake County Attorney James Lapotka stood at the cell’s center talking about the people he helps confine here. He stretched out his arms, his fingertips just shy of touching opposite walls. “I’m getting anxiety just being in here,” Lapotka said.

Last year, a man sentenced for stealing a rifle stayed in that cell 129 days. He was waiting for a spot to open at Montana’s only state-run psychiatric hospital after a mental health evaluator deemed he needed care, according to court records.

A man in the next cell around the same time was on the same waitlist roughly five months. He faced near-daily stints in the jail’s emergency restraint chair — a steel contraption wrapped in foam with straps for his shoulders, arms, and legs. He regularly saw the jail’s mental health doctor. Still, Joel Shearer, a Lake County detention commander, said the man routinely experienced psychotic episodes and asked to be locked in the chair when he felt one coming on and stayed there until his screams subsided.

“Somebody who’s having a mental health crisis — they don’t belong here,” Lapotka said. “We don’t have anywhere else.”

Lake County’s two, roughly 30-square-foot isolation cells are an example of how communities nationwide are failing to provide mental health services — crisis care, in particular. Nearly half of the people locked in local jails in the U.S. have a mental illness.

More than half of Wyoming’s 23 sheriffs told lawmakers there that they were housing people in crisis awaiting mental health care for months, WyoFile reported in January. Nevada has struggled despite a $500 daily fine for each jailed patient whose treatment is delayed. Disability Rights Oregon has said delays in that state continue after two people died in jail while on the state’s psychiatric waitlist.

In Montana, counties are jailing mental health patients they’re not equipped to handle when the Montana State Hospital is at capacity. Few local hospitals have their own inpatient psychiatric beds. As a result, people arrested for anything from petty theft to felony assault can be jailed for months or longer as their mental health worsens. Many haven’t been convicted of a crime.

Montana officials have known for years they have a problem. State officials have said they don’t have space for all the people ordered to the hospital. The psychiatric hospital has 270 beds, with 54 for people in the criminal justice system. Staffing shortages can shrink that capacity further.

Continued

NJ group home residents face neglect, abuse and despair in a flawed system

By Ashley Balcerzak and Jean Rimbach, North Jersey . com, May 3, 2025

Key Points:

• A NorthJersey.com investigation into group homes for adults with developmental disabilities included interviews with family members, staff, providers, experts, advocates and residents.
• Reporters analyzed tens of thousands of pages of state, court and law enforcement records, including thousands of police calls, and body camera footage related to NJ group homes.
• The group home investigation found people who died alone and in avoidable ways; people who weren't provided basic care; overburdened staff and medical errors that caused injury and death.

In New Jersey’s group homes that provide round-the-clock care for adults with intellectual and developmental disabilities, the consequences are few and the dangers are many.

It’s an estimated $1.5 billion system where staff are poorly paid and there are troubling lapses in care. A system where the state reacts slowly, if at all, to problems, and companies are allowed to expand even in the face of mounting concerns. A system where a lack of accountability can have devastating results for residents ― people with conditions such as autism, Down syndrome and cerebral palsy.  

It’s a system where 132 private companies largely police themselves, where information is hidden from the public under the guise of protecting the vulnerable but instead hides its failures.  

It’s a system where many families feel powerless, bullied and dismissed.

Calls for help to the state ombudsman for people with developmental disabilities have increased nearly threefold in the past five years. And year after year reports from his office warning of dangerously poor care in group homes go unheeded, even as the system grows. 

“It's on a daily basis that we're working with individuals and families on abuse and neglect situations,” said Paul Aronsohn, the ombudsman. “They're crying to us. They're at their wit's end. They don't trust the system. They're constantly being re-traumatized by these experiences.” 

To produce Hidden at Home, an investigative project that delves into the state’s group home system that cares for more than 8,000 people, NorthJersey.com spent more than a year interviewing hundreds of family members, group home staff, providers, experts, advocates and residents with developmental disabilities. Throughout this multi-part series, you will get to know many of them and read their personal, distressing experiences.  

Others asked that their names not be published, fearing retribution against their loved ones currently living in group homes. They also worry about being branded troublemakers, hindering their chances of finding a better, safer home for those they care about. 

Continued

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Martha Cray holds a picture of her son William "Billy" Cray, 33, on May 8, 2024 in Toms River, N.J. Billy was found dead on the floor of his bedroom closet in a group home run by Devereux Advanced Behavioral Health. (Photo by Michael Karas)

Hidden at Home: Alarming questions, few state investigations of NJ group home deaths

By Ashley Balcerzak and Jean Rimbach, North Jersey . com, May 3, 2025

Key Points:

• Since 2019, the average number of deaths among NJ group home residents per year is about 170.
• Of those 170, an average of 120 NJ group home residents die unexpectedly, meaning they were not in hospice or palliative care.
• The state agency that oversees the system does not investigate all unexpected deaths under NJ group home care.

Fourteen. That’s how many times Michael Lombardi tried to dial 911 in the hours before he was found dead at age 39 in a state-licensed group home for adults with disabilities. 

More than a year. That’s how long it took the state to open an investigation into Michael’s death, doing so only after his mother, Nancy, pleaded for months with government workers, searching for answers, aching for closure.  

One year and seven months. That’s how long Michael’s grieving mother waited after his July 2022 death for a state report that failed to explain why her son with cerebral palsy died calling for outside help when on-site caregivers were supposed to be steps away. 

Michael’s cause of death was a “probable seizure disorder,” according to his autopsy report. He had no history of seizures.  

It’s unknown how many people like Michael Lombardi die under unsettling circumstances in the care of New Jersey's group homes for adults with developmental and intellectual disabilities. New Jersey does not investigate every group home death and releases scant details about those who die while living in the more than 2,000 privately-run homes and apartments it oversees. 

NorthJersey.com spent more than a year identifying people with disabilities who died while under group home care, combing through obituaries, interviewing families and reviewing thousands of pages of court and law enforcement records, medical examiner reports and state documents. It was an effort to piece together their final moments, find out what led to their deaths and learn what was done in the aftermath.  

Reporters found nearly 50 cases since 2013 in which vulnerable group home residents died amid alarming questions about their care and supervision. 

These homes look like any others on the thousands of neighborhood streets across New Jersey. But inside, a rotating staff cares around-the-clock for adults with disabilities such as autism, cerebral palsy or Down syndrome, in settings that have largely replaced the massive institutions of earlier decades.

What emerged were stories of people who choked to death or wandered perilously into traffic unsupervised. People who suffered bedsores, dehydration and malnutrition. People who were left alone to die, with nobody to provide first aid, or medication, or simply notice they had stopped breathing. 

There is 21-year-old Katie Moronski, who died in June just two days after moving into a group home run by Broadstep. Her cause of death, which was ruled accidental, was “acute intoxication” from prescription medication, which the group home is responsible for dispensing.  

Frank Susinno died in 2020, after he was left alone at a group home run by EIHAB Human Services and consumed 10 ounces of lemon-scented liquid dish soap. Jennifer DeKalb, who had an impulse control disorder, died in 2017 after binging on at least 36 cookies and 2 liters of soda while under the care of Allies Inc. 

Frank Dattilo died in 2022 after being left alone by Arc of Camden County caregivers in a vehicle parked at an ice cream stand. He was found slumped forward, his face bluish purple.  

There are young men such as 33-year-old William “Billy” Cray, who was supposed to be checked on every 15 minutes, but was found dead face down halfway into his closet, after his caregivers at Devereux Advanced Behavioral Health failed to look in on him for at least nine hours.  

Continued

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The two stories above are the first installments in a series from NorthJersey. com, "Hidden At Home"

Read more here

Maine - MaineGeneral Health announces cuts to pediatric mental health and disability services

By Jim Keithley, WMTW News, May 6, 2025

MaineGeneral Health confirmed plans Tuesday to cut some pediatric services for children with mental health needs and disabilities.

The hospital’s president and CEO Nathan Howell said in a statement that the hospital is facing challenges including low reimbursements, excessive insurance denials and increased operational costs.

“Every effort has been made to minimize the impact to our employees, patients and our community,” Howell said.

As a result, Howell said the Edmund Ervin Pediatric Center is making changes to address financial challenges stemming from reductions in government and insurance reimbursements.

On May 16, MaineGeneral Health plans to close the Pediatric Rapid Evaluation Program, also known as PREP, which helps children recently placed in foster care and offers psychological services to others.

“While we recognize the impact of these changes, we will continue to offer 95 percent of our current services through our robust pediatric and outpatient rehabilitation service lines,” Howell said in a statement.

In April, the hospital announced 20 layoffs weeks after Howell anticipated 100 positions would need to be eliminated. 

Continued

Impact of Federal Medicaid Proposals on Maine

State of maine, Department of Health and Human Services, May 2, 2025

As the U.S. Congress develops the federal budget, several proposals have surfaced to meet the stated goal of $880 billion in savings from the House Energy and Commerce Committee. Many of these proposals center on Medicaid, which provides health coverage to low-income individuals and families, older adults, and people with disabilities, nationwide. While these savings targets and resulting initiatives are not final and will likely evolve, it's important to understand how some of the proposed federal changes may impact MaineCare -- Maine's Medicaid program -- and the people it serves.

As of January 2025, roughly 392,000 Mainers were enrolled in Medicaid and the Children's Health Insurance Program under MaineCare.

Federal Partnership: A Critical Component of MaineCare

MaineCare, like all Medicaid programs, is built on a state-federal partnership, with federal funding playing a central role in ensuring access to health care for Mainers of all ages. Currently, federal law ensures the federal government covers:

• 90% of the cost for low-income, childless adults enrolled through MaineCare Expansion
• Approximately 74% of the cost for moderate- to low-income children enrolled under the Children's Health Insurance Program (CHIP)
• Approximately 62% of the cost for most other MaineCare members

Potential Federal Changes Under Consideration

A number of potential policy changes are being discussed at the federal level, including:

• Placing a growth cap on federal Medicaid funding per Medicaid expansion enrollees
• Elimination of the enhanced federal match for expansion populations
• Limiting provider taxes, which are an important financing mechanism in almost all states
• Requiring certain Medicaid beneficiaries to meet work requirements

Maine has modeled the estimated impact of these potential proposals based on the limited proposal details available. For more detail on the potential impacts, please refer to The Impact of Proposed Federal Medicaid Changes on MaineCare (PDF).

What This Could Mean for Maine

The proposed changes to federal Medicaid funding would shift significant costs to states. Unlike the federal government, Maine is required to balance its budget each year, meaning increased health care costs at the state level will have significant implications, including potential reductions to services, eligibility, and reimbursement under MaineCare.

Read the full article here

Lifelines for vulnerable Oklahomans, disability services are under attack

Opinion by Meske Owens, Oklahoma Voice, May 9, 2025

Budget cuts are often sold to the public as necessary belt-tightening — an unfortunate but unavoidable step toward “fiscal responsibility.”

But what happens when those cuts target the most vulnerable among us? What happens when the programs being slashed aren’t luxuries, but lifelines?

Across Oklahoma and the nation, disability services are quietly being defunded, downsized, or dismantled. These decisions may not make front-page news, but their impact reverberates deeply in the lives of disabled individuals and families who depend on them for support, inclusion, and survival.​

Programs designed to support and protect people with disabilities — like state councils on developmental disabilities, protection and advocacy systems, and national initiatives that give us a voice — face the threat of elimination.

As a single mom of five, raising a son on the autism spectrum, I live the realities these programs are designed to address.

Every day, I navigate school systems, health care barriers and support networks in a world that isn’t built with families like mine in mind.

And I’m not alone.

Since 2022, more than 2,000 Oklahoma families have been approved for or are currently receiving developmental disability services, following a significant reduction in the state’s waitlist from 13 years to one. These services are not luxuries; they are essential supports that enable families to move from merely surviving to truly thriving.

What truly changed the trajectory of my advocacy journey was Partners in Policymaking, a leadership training program I completed through the Oklahoma Developmental Disabilities Council. That experience gave me the tools to speak up — not only for my child, but for the entire community. I learned how to navigate the Legislature, challenge broken systems, and amplify the voices of others who are often ignored.

This is not just a budget issue — and it’s not about left versus right. It’s about what’s right versus wrong.

In Oklahoma, recent funding efforts have made a measurable difference. Rolling back that progress now would be devastating.

Despite that, I’m hearing growing concern that this progress could be reversed in the upcoming budget and that these critical services could be on the chopping block — putting thousands of families at risk of losing the critical support they’ve only just begun to receive.

Budget cuts would send a message loud and clear that our needs are not a priority. Without programs like these, future advocates won’t get the chance to find their voice. The leaders, policy changers, and community builders of tomorrow will be silenced before they ever begin.

Cutting disability programs means cutting off access — to education, employment, independence, safety, and basic dignity. It also means delaying early screenings and interventions — critical steps for diagnosing developmental disabilities, identifying delays like autism and addressing childhood trauma.

The data is clear: approximately 1 in 6 children aged 3–17 in the U.S. has a developmental disability. Services to support these children are not a luxury — they are a necessity. When children are denied early access to help, we miss critical windows of opportunity that shape their futures."

Continued

Virginia - I care for people with disabilities. Washington is turning its back on us.

By Stephanie Crumb, The Virginian-Pilot, May 3, 2025

For 10 years, I’ve worked as a direct support professional (DSP) at Hope House, supporting adults with developmental disabilities. It’s not just what I do — it’s who I am. I’ve always been passionate about advocating for equal rights, quality support and care for marginalized populations. It’s filled with compassion, trust and the belief that everyone matters.

That’s why news of a proposed $880 billion cut to Medicaid feels like an attack on vulnerable people — not only me, but people I support, families and the entire disability community.

Like many in this field, I believed our elected officials — regardless of party — understood the unique and urgent needs of people with disabilities.

Caring for others is an issue without bias; we shouldn’t have to live in fear wondering which political group is in our corner. We should all listen and assist in lifting each other up, building greater pride in our country. If our leaders cannot work together to ensure citizens feel safe and supported, then what example are they setting? Strength of our nation isn’t measured by savings — it’s the unity of our people.

Advocates spent decades speaking with legislators, educating them about life-changing impacts of Medicaid. We took comfort in President Donald Trump’s public promise to protect Medicaid, along with Medicare and Social Security. Now $880 billion is expected to be cut from these programs. We’re confused, disheartened and feel betrayed.

When hearing “budget cuts,” we assume it’s to improve efficiencies, and not to diminish movements many have worked toward for generations. For those I support, Medicaid is the difference between living safely in their home or being institutionalized, between contributing to communities or being isolated and forgotten.

Not just them, but their families, too. Many are cared for by aging parents that are already overburdened. Medicaid gives respite and peace of mind. Stripping away those supports leaves them with impossible choices.

DSPs are the backbone of disability care. We’re trained to provide daily in-home services and much more. We’re advocates, nutritionists, supported decision-making partners, drivers, party planners, co-regulation partners, teachers and accountants, to name only a few roles. We’re already underpaid and undervalued. Medicaid cuts mean further wage stagnation, job losses and workforce shortages. Without DSPs, there’s no care, no services and no safety net.

Continued

Utah governor, state courts hit with lawsuit over new disability law

By Kyle Dunphey, Utah News Dispatch, May 2, 2025

Utah state leaders are being sued over a bill passed by the Legislature and signed by Gov. Spencer Cox in March created a new guardianship system for adults with “severe” intellectual disability. 

In a complaint filed in federal court in Utah earlier this month, the American Civil Liberties Union (ACLU) and Disability Law Center argued the law — SB199 — violates the American With Disabilities and the Rehabilitation acts, as well as the 14th Amendment of the U.S. Constitution, which grants equal protection under the law to all citizens. 

Sponsored by Sen. Kevin Stratton, R-Orem, and signed by Cox on March 17, SB199 creates a separate guardianship proceeding for people with a “severe” intellectual disability. To qualify, a physician or psychologist must sign a letter “that indicates that the adult is an individual with a severe intellectual disability,” the bill reads. 

Continued

Kennedy Announces New Database for Research Into ‘Root Causes’ of Autism

By Sheryl Gay Stolberg, The New York Times, May 7, 2025

After weeks of confusion about his plans for autism research, Health Secretary Robert F. Kennedy Jr. said on Wednesday that his department would build a “real-world platform” that would allow researchers to hunt for causes of the disorder by examining insurance claims, electronic medical records and wearable devices like smart watches.

The department will draw the records from Medicare and Medicaid, which together cover around 40 percent of Americans. The National Institutes of Health and the Centers for Medicare and Medicaid Services will partner on the project, Mr. Kennedy said.

But it was unclear whether the announcement would assuage researchers, advocates and parents, who reacted with alarm last month when Mr. Kennedy and Dr. Jay Bhattacharya, the director of the National Institutes of Health, floated — and then walked back — the idea of an autism registry for research. Many feared privacy violations.

In Illinois on Wednesday, Governor JB Pritzker, a Democrat, issued an executive order aimed at protecting the privacy rights of state residents with autism. His office said he made the move in response to “rising national concerns about efforts to create federal autism registries or databases without clear legal safeguards or accountability.”

Mr. Kennedy’s intense focus on autism stems from his insistence, despite evidence otherwise, that vaccines are to blame for the rapid rise in autism diagnoses in the United States. The Centers for Disease Control and Prevention recently reported that about 1 in 31, or 3.2 percent, of American eight-year-olds have received a diagnosis.

For the new database, the health department said it would take steps to ensure the privacy of medical data. But it is not clear precisely what kind of research will be conducted. Mr. Kennedy said in the announcement that his department would use the platform “to uncover the root causes of autism and other chronic diseases.”

Some experts were skeptical.

“It’s the registry without the word ‘registry’ in it,” said David Mandell, a professor of psychiatry and longtime autism researcher at the University of Pennsylvania. He said that some of his research had relied on Medicaid data, which had been difficult to access, and that on one level he welcomed the announcement.

But he also expressed concern that the data would be “misused or misappropriated,” or steered toward vaccine studies.

“We are creating a tool, and tools can be used for good and for evil,” Dr. Mandell said. “I know a lot of researchers — and I like to think of myself as one — who have used this kind of tool for good. And I’m really concerned that that’s not what happens.”

Continued

"Profound Autism" Consensus Definition Debuts at INSAR

By Amy S.F. Lutz, Psychology Today, May 7, 2025

Key points

• "Profound autism" has been defined in different ways since its introduction in 2021.
• A Delphi process including a range of stakeholders was used to craft a consensus definition.
• This new definition is expected to catalyze targeted research and intervention development.
• "Profound autism" is part of a growing interest in autism subtypes, rather than a singular diagnosis.

It’s been more than three years since the Lancet Commission proposed the new term “profound autism” to describe the subset of the autism spectrum most disabled by the disorder. This label has been widely embraced by a range of stakeholders, including researchers, clinicians, policy makers, autistic people, and parents. A quick search for “profound autism” on Google Scholar reveals almost five hundred articles published since 2021 – a notable corrective to the well-documented exclusion of this population from research since the 1990s.

But what, exactly, is “profound autism”? The Lancet Commission suggested this term apply to autistic people who “require[e] 24hr access to an adult who can care for them if concerns arise, [are] unable to be left completely alone in a residence, and [cannot] take care of basic daily adaptive needs. In most cases, these needs will be associated with a substantial intellectual disability (eg, an intelligence quotient below 50), very limited language (eg, limited ability to communicate to a stranger using comprehensible sentences), or both.” Because of the uncertain developmental trajectory of young children, the Commission cautioned against attaching profound autism to children younger than eight.

While most researchers – long frustrated by the blanket “autism spectrum disorder” diagnosis and its inclusion of everyone from Harvard graduates to adults with severe cognitive, communication, and behavioral challenges – celebrated the opportunity to focus on those in most desperate need, they also wanted to use existing data sets that classified subjects a little differently. Alison Singer, president of the Autism Science Foundation, explained these slight modifications: some studies included children younger than eight, or autistic people with IQs below 70 instead of 50. Others added self-injury and/or aggression to their criteria – behaviors the Lancet Commission had noted were “associated” with profound autism, even as they specified that the label was “not defined by these factors.” Although there was much overlap in these definitions, the differences meant that the results could not be compared or generalized. The need for a consensus definition of profound autism became increasingly obvious.

Delphi Process Used to Achieve Consensus Definition

Credibility demanded a wide range of input, as well as opportunities for feedback, negotiation, and compromise. Ultimately, the Autism Science Foundation partnered with the Profound Autism Alliance to fund a Delphi process – a formal decision-making method that has been used to reach expert agreement across a range of disciplines, including education, healthcare, and business. Almost 140 researchers, clinicians, parents, and autistic people from around the globe were invited to participate (full disclosure, I was one of them). It took almost a year, but last week the consensus definition was announced in Seattle at the annual meeting of the International Society for Autism Research INSAR), the largest conference on autism research in the world. Someone with profound autism:

1. Meets the diagnostic criteria for autism.
2. Is at least 8 years old, acknowledging that some characteristics consistent with profound autism are evident earlier.
3. Requires adult supervision, exceeding age-appropriate levels, to ensure physical and mental health, safety, and well-being (due to risks such as elopement, injury, or lack of environmental awareness).
4. Demonstrates adaptive functioning skills significantly below age level, with an inability to independently perform most activities of daily living (e.g., bathing, food preparation, dressing).
5. a. Has severely impaired cognitive abilities, reflected by IQ under 50, AND/OR
6. b. Generally, does not verbally communicate other than single words or fixed phrases, and communicates predominantly only to have their basic needs met.
7. These characteristics are neither intermittent nor transient and persist across different environmental settings and situations.

Continued

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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.