June 13, 2025

VOR's Weekly News Update

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run by families of people with I/DD and autism

for families of people with I/DD and autism.

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More Than Half of the Public Worries Federal Medicaid Budget Cuts Would Affect Their Family’s Ability to Obtain and Afford Care; More Worry It Will Increase the Uninsured 

KFF. org, June 6, 2025

As Congress weighs spending cuts and other changes to Medicaid, more than half (54%) of the public say they are worried significant reductions in federal Medicaid spending would negatively affect their family’s ability to obtain and afford health care, a new KFF Health Tracking Poll finds. This includes about three in 10 (29%) who say they are “very worried” about such an outcome. 

Democrats (69%) and independents (68%) are much more likely to say they are worried about the impact of potential Medicaid cuts on their families compared to Republicans generally (31%) and supporters of President Trump’s Make America Great Again (MAGA) movement specifically (26%). 

Among Medicaid enrollees themselves, a large majority (86%) worry about the impact of cuts on their families, including six in 10 (60%) who say they are very worried. Three- quarters (76%) of MAGA supporters and other Republican Medicaid enrollees say they are worried about the potential impact of federal spending reductions on their families, as are about half (53%) of Republicans with household incomes less than $40,000. 

About seven in 10 people overall also say they are worried federal Medicaid spending reductions would lead to more adults and children becoming uninsured (72%, including 46% who are “very worried”) and would negatively impact hospitals, nursing homes, and other health care providers in their communities (71%, including 42% who are “very worried”). 

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Medicaid 'churn': How working Americans could lose coverage under Trump tax bill

By Ken Alltucker, USA Today, June 12, 2025

A centerpiece of President Donald Trump's tax bill would make millions of Medicaid recipients work, volunteer or study to maintain their publicly financed health insurance.

Republicans say the work requirement is vital to protect taxpayers while motivating nondisabled Medicaid recipients to take charge of their physical and fiscal health. Dr. Mehmet Oz challenged this population to "prove that you matter."

But health advocacy groups and analysts say most recipients already work in jobs that don't provide affordable health insurance or pay enough for people to afford their own insurance. They say a Medicaid work requirement − combined with more frequent eligibility checks − would create an administrative nightmare that drops coverage for many who qualify for the public health insurance program for low-income and disabled residents.

What is Medicaid churn?

Medicaid rolls vary from month to month as people lose eligibility because of a new job, a raise or an additional income source that disqualifies them for coverage. A job loss or change in life circumstances could make someone newly eligible.

The constant change of Medicaid rolls is what health policy experts call churn. A person who temporarily loses coverage because of a paperwork problem or a mistake must again sign up.

"Churn is what happens when these eligibility systems become difficult to navigate," said Jennifer Tolbert, deputy director of the program on Medicaid and the uninsured for KFF, a health policy nonprofit.

The federal government requires state Medicaid programs to check enrollees' eligibility once a year. The Trump tax cut legislation would require states to double eligibility checks to twice a year. And states would have the added duty of verifying a person's employment or exemption status.

The legislation, which passed the House and awaits Senate approval, requires Medicaid recipients who are "able-bodied" adults without children to work 80 hours a month or qualify for an exemption such as being a student, caregiver or having a disability. The bill defines "able-bodied" as people who are not medically certified as physically or mentally unfit for employment. The legislation also would strip coverage from undocumented immigrants who get Medicaid through state-funded programs.

Health policy experts say more frequent eligibility checks and red tape will add administrative costs and cut off people who qualify but fall through the cracks because of administrative miscues.

"People are going to have to document work status or exemption status multiple times a year, and at each point there's a risk that someone who is eligible could lose coverage," Tolbert said.

Thousands lost coverage under Arkansas work requirement

During the first Trump administration, the Centers for Medicare & Medicaid Services gave states the option of implementing a work requirement for nondisabled adults on Medicaid. Arkansas' work requirement cut more than 18,000 residents from Medicaid within the first seven months of the program. People were removed often because people were unaware of paperwork requirements to keep their coverage, research shows and analysts said.

Arkansas adults who didn't have access to the internet at home were disproportionately harmed by the policy, a sign adults might have had trouble accessing the state's online portal to report work histories or exemptions, the Urban Institute said.

If the work requirement for Medicaid recipients is adopted nationwide, health experts say, millions of working-poor Americans will inevitably lose coverage.

The nonpartisan Congressional Budget Office estimated 10.9 million Americans would lose health insurance coverage through 2034 under the legislation. Most would lose coverage because of the Medicaid work requirement and the twice-a-year eligibility checks, but about 3.1 million would become uninsured from tweaks to Affordable Care Act enrollment, according to a KFF analysis.

The ranks of the uninsured could grow larger if Congress doesn't extend the COVID-19 pandemic-era tax credits that have made ACA plans more affordable for consumers. If the tax credits expire and Congress passes the current version of the Trump tax bill, as many as 16 million Americans would lose coverage , according to the CBO.

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Cuts To Medicaid Will Destabilize The US Job Market

By Kristi Martin and Hannah Katch, Health Affairs, June 12, 2025

Right before Memorial Day, the House of Representatives passed a bill that included dramatic cuts to Medicaid. In addition to threatening health care coverage for millions of Americans, these cuts would have a significant negative impact on a large and growing segment of the private-sector workforce: workers who provide vital services to people with Medicaid coverage and serve an essential role in care for our aging population. 

Under this bill, roughly 16 million people would lose coverage, between the Medicaid cuts, changes to the Affordable Care Act Marketplaces, and the expiration of enhanced premium tax credits for Affordable Care Act plans. However, there has been less focus on the bill’s potential impact on the U.S. labor market, specifically how the estimated $700 billion in cuts to Medicaid may result in significant job losses. 

Medicaid Is An Essential Source Of Health Care Jobs

Analysis of data from the Bureau of Labor Statistics shows, when reviewed at a level more granular than broad industry, illustrate how important Medicaid is to the job market (Exhibit 1). For example, “Services for the elderly and persons with disabilities” is the single largest private-sector industry with net job growth over the past 20 years, adding an estimated 2 million jobs to the labor market. For comparison, the second largest industry for job growth is “General warehousing and storage” with 1.2 million jobs added, which was transformed over the past 20 years by Amazon’s delivery network. 

To be sure, Medicaid is not the only payer for services for the elderly and disabled, but Medicaid is definitely the single largest payer for long term care services and supports (LTSS), accounting for nearly half of total LTSS spending in the US. LTSS includes care provided in a nursing home or other facility. It also includes home and community-based services (HCBS), which is care provided to older adults, people with physical disabilities, and people with intellectual and developmental disabilities in their own homes or communities rather than institutions or other isolated settings. States are not required to cover HCBS in their Medicaid programs, but all states cover some HCBS benefits. 

The job growth in "Services for the elderly and persons with disabilities" has risen in correlation with the trend of states providing more HCBS over time. However, if Congress enacts the House bill’s dramatic Medicaid cuts, states will be forced to make significant cuts to their Medicaid programs. States have three basic options for where to apply Medicaid cuts: optional benefits (like HCBS), eligibility (cover fewer people), or provider rates (pay doctors and hospitals less). 

Historically, when states have been forced to cut Medicaid spending, HCBS was among the first benefit on the “chopping block.” The most recent example occurred during the Great Recession, when every state Medicaid program cut services and benefits for HCBS between 2010 and 2012. 

Continued

Uncertainty over Senate provider tax stance fuels new lobbying push   

By Kimberly Marselas, McKnights Long-Term Care News, June 10, 2025

Just a month ago, skilled nursing providers were instrumental in convincing House lawmakers to reconsider their standing on provider taxes, which help fund long-term care in 46 states.

As the Senate digs in on its own version of the “One Big, Beautiful Bill,” advocates find themselves right back in the same position, American Health Care Association’s Senior Vice President of Government Relations Michael Bassett said here Tuesday.

“There was all kinds of talk about, ‘We should cut this. We should cut that.’ We got very nervous,” recalled Bassett of a weeks-long process to craft Medicaid cuts in the House Committee on Energy and Commerce. “We had to start a massive education campaign in the House to let them know how vital [provider taxes] are to seniors and disabled patients.”

Eliminating those taxes, which was once on the table in the House, “would be game over — devastating,” Bassett said.

Instead, with advocacy and education, the House went from considering elimination of the provider tax device to reducing a cap from 6% to 4%, then to 5% — to eventually deciding just to freeze the taxes at their current 6% max.

“It just goes to show, when we speak with one voice, the impact we can have,” Bassett told AHCA members gathered for day two of the association’s annual Congressional Briefing.

Senate focus heats up

The House passed its version of the reconciliation bill on May 22 and Senate negotiations are ongoing, with behind-the-scenes jockeying heating up on key healthcare provisions — including a possible hit to Medicare Advantage spending. But the Senate will have to address some of the same considerations the House did, including whether to limit provider taxes, which could again come under fire.

“They’re going to make changes, and we find ourselves in the same type of environment,” Bassett said, noting options bandied about are to cut the max rate to 3% or altogether. “The effort we did in the House is now what we need to replicate in the Senate.”

Two-thirds of nursing home residents rely on Medicaid, and a cut to provider taxes would almost certainly impact home- and community-based services and assisted living waiver programs too.

Continued

Read a related story from Skilled Nursing News here

Democrats make pitch for Medicaid improvements as 'big beautiful bill' debate heats up

By Paige Minemyer, Fierce Healthcare, June 12, 2025

As the fight in the Senate over the "big beautiful bill" heats up, key Democrats have unveiled their own take on addressing fraud and waste in Medicaid.

Oregon Sen. Ron Wyden, the ranking member on the Senate Finance Committee, led a group of about a dozen Democrats in releasing legislative proposals that seek to invest in and improve Medicaid while also spotlighting federal anti-fraud efforts.

The senators introduced 13 bills tackling multiple different facets of the Medicaid program. For example, Wyden co-sponsors a bill that seeks to avert the closure of labor and delivery wards by increasing Medicaid reimbursements to rural and high-need health systems.

Another bill, sponsored by Sen. Sheldon Whitehouse, D-R.I., would ensure individuals enrolled in Medicaid and the Children's Health Insurance Program can maintain continuous eligibility for 12 months.

Continued

AMA Calls for Senate Investigation of RFK Jr.

By Shannon Firth, MedPage Today, June 10, 2025

Physicians called on HHS Secretary Robert F. Kennedy Jr. to immediately reverse his decision to fire all 17 sitting members of the CDC's Advisory Committee on Immunization Practices (ACIP), and called for a Senate investigation into his actions.

Less than 24 hours after Kennedy announced that HHS had removed all of CDC's vaccine advisors, American Medical Association (AMA) delegates passed an emergency resolution urging Kennedy to reverse this move during their annual meeting. Delegates also directed AMA leadership to send a letter to the Senate Health, Education, Labor, and Pensions (HELP) Committee requesting an investigation into the firings.

The resolution also called for the AMA to "initiate sustained public advocacy" in support of the current ACIP structure, including its liaison representatives, and to "identify and evaluate alternative evidence-based vaccine advisory structures and invest resources in such initiatives, as necessary."

Continued

Supreme Court Unanimously Sides With Disabled Student in Lawsuit vs. District

By Beth Hawkins, The 74 Million, June 12, 2025

In a unanimous opinion delivered by Chief Justice John Roberts, the U.S. Supreme Court on Thursday sided with the family of Ava Tharpe, a teen with a rare form of epilepsy whose suburban Minneapolis district denied her request for a modified school day. The decision, A.J.T. vs. Osseo Area Schools, means K-12 students do not have to meet a higher standard of proof than others suing under the Americans with Disabilities Act.

If the justices had agreed with the district’s longstanding argument, children with disabilities would have had to prove their school system intentionally acted in bad faith in denying them in-school accommodations. In “friend of the court” briefs, numerous advocacy groups had warned that holding special education students to a different — and extraordinarily strict — definition of discrimination would have made it virtually impossible for families to assert their rights. 

The court agreed, saying everyone who files suit under the ADA should have to meet the same standard of “deliberate indifference,” or disregard for an individual’s need for accommodations.

“That our decision is narrow does not diminish its import for A.J.T. and ‘a great many children with disabilities and their parents,’ ” Roberts wrote, citing language from a lower court decision. “Together they face daunting challenges on a daily basis. We hold today that those challenges do not include having to satisfy a more stringent standard of proof than other plaintiffs to establish discrimination under Title II of the ADA and Section 504 of the Rehabilitation Act.”

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Effort To Roll Back Federal Disability Rights Protections Alarms Advocates

By Michelle Diament, Disability Scoop, June 9, 2025

The Trump administration is quietly working to fast-track changes to a key disability rights law by circumventing typical procedures, advocates are warning.

The U.S. Department of Energy posted a notice last month announcing plans to rescind requirements under Section 504 of the Rehabilitation Act that specify what standards newly constructed and altered buildings must meet in order to be considered accessible.

The change would do away with a mandate that’s been on the books for decades, advocates say, sowing widespread confusion. More than that, it’s the way that the agency is going about the update that’s setting off alarm bells.

Typically, in order to modify regulations, federal agencies go through a process known as “notice and comment,” where the public is given notice, offered a period of time to comment and then the agency considers any comments before issuing a final rule. Those steps can take years to complete.

In this case, however, the Energy Department is using a far more expedited approach known as a “direct final rule.” As a result, the notice indicates that the change will take effect July 15 unless “significant adverse comments” are received by next week.

The move is highly unusual, according to Claudia Center, legal director at the Disability Rights Education & Defense Fund.

“A ‘direct final rule’ is supposed to be for something routine or noncontroversial,” she said. “One example I heard was changing the name of a department. I’ve never seen it before in my career, and most of my colleagues report the same.”

Center said she’s concerned that if the Trump administration is successful, they could use this same approach to make other big changes.

“This action could be a ‘trial balloon’ for other agencies,” she said. “There are more than 80 sets of Section 504 regulations across the federal government. This could be the first of many.”

Continued

West Virginia - ‘Mama bears don’t stop’: Families impacted by Medicaid error left without answers

By Logan Perrone, WAVE News, June 6, 2025

As Medicaid Home and Community-Based Services (HCBS) waiver denials are reversed, parents are seeking accountability. 

“My child’s Down syndrome is not going away,” mom Trina Martin said. “That is part of her DNA that’s not going to change.”

What did change this spring was Ellie’s Medicaid coverage, which helps with the things most parents take for granted. She was one of the hundreds of Kentucky Kids with Autism and or Down Syndrome who were denied a renewal during their yearly assessment, despite circumstances staying the same.

“There was no change to the actual waiver policy, and there was no change to the kids’ diagnoses and things like that,” Martin said. “But all of a sudden, they didn’t meet the level of care anymore.”

Denials hit families in all corners of the Commonwealth. Facebook groups formed, and parents like Martin began to notice a pattern.

“They were all kids. They either had autism, Down syndrome, or both diagnoses,” she said. “So we started kind of thinking something doesn’t sound right.”

In a May 15 letter, the Cabinet for Health and Family Services said a mistake was made by a third-party subcontractor and promised to review every child’s case in 2025.

Many have been reinstated in the weeks that followed, including Ellie, but an answer as to exactly how this could have happened is still up in the air.

Trina asked the Cabinet for Health and Family Services for all correspondence between the Cabinet and that subcontractor, Carewise. That request was denied for being “an unreasonable burden.”

CHFS has requested an extension on a separate request she has made.

“We’re kind of getting a little bit of a run around right now, so we’re just going to keep pushing and try to get as much information as we can,” Martin said. “As a parent and as a group, we all feel very targeted, whether that be true or not, we don’t know, that’s what we’re trying to find out.”

The issue impacted hundreds of families this spring.

Continued

Pennsylvania - Coleman Hearing Focuses on Regulations Limiting IDD Opportunities

Press release from PA Senate Republicans June 9, 2025

Sen. Jarrett Coleman (R-16) today convened the Senate Intergovernmental Operations Committee that he chairs for a public hearing about his bill to remove regulatory barriers for housing and work opportunities for individuals with an intellectual or developmental disability (IDD).

Coleman introduced Senate Bill 657 after learning from families impacted by IDD that they can’t access the types of housing options and programs available to residents of other states. Regulations of the Pennsylvania Department of Human Services (DHS) impose size, location and capacity limitations that exceed the federal qualifications for Medicaid funding. After trying to work with DHS for several months to find a solution, Coleman decided legislation was the only way to get DHS to give serious consideration to reevaluating their discriminatory policies.

Committee members heard from several families, providers and associations that support DHS giving more residential and vocational options to individuals with IDD, including:

• Dr. Amy Lutz, a historian of medicine at the University of Pennsylvania and parent of a profoundly autistic adult son, argued, based upon the available research, these “size and density restrictions reflect ideological biases rather than evidence-based practice.”

• William Wright, a father of a an adult son with autism and the president of Love Ran Red Foundation and Duke’s Delites, an Allentown-based dog treat company that employs 12 adults with intellectual disabilities, would like to create a neuro-inclusive community in the Lehigh Valley for 20 individuals with IDD and said current regulations complicate this vision because “they limit choice, discourage innovation, and block access to community-based housing options that reflect people’s real lives and real preferences.

• Richard Edley, president and chief executive officer of the statewide Rehabilitation & Community Providers Association, said many families “are desperate for solutions and simply cannot understand why possibilities such as an intentional community or a campus setting are seen so negatively” by DHS when there is “not a federal mandate or requirement.”

As the hearing opened, Coleman expressed his disappointment that DHS declined to testify in person “to answer questions and defend its position publicly on such a consequential matter.”

Continued

Florida - New law brings managed care to people with intellectual disabilities

By Christine Sexton, Florida Phoenix, June 10, 2025

Gov. Ron DeSantis on Tuesday signed into law priority legislation for House Speaker Daniel Perez that addresses how people with intellectual and developmental disabilities (IDD) receive health care.

Federal Medicaid law provides coverage for health care services to cure or ameliorate diseases but generally doesn’t cover services that won’t. Specific to IDD, Medicaid covers the costs of institutional care but not of home- and community-based services that, if provided, can help people with IDD live outside of institutions.

Former Gov. Jeb Bush applied for a Medicaid waiver to provide these services to people with IDD. Eligible diagnoses include disorders or syndromes attributable to intellectual disability, cerebral palsy, autism, spina bifida, Down syndrome, Phelan-McDermid syndrome, or Prader-Willi syndrome so long as the disorder manifested itself before the age 18.

Read the full article here

(MORE STATES SHOULD DO THIS!)

Florida - Legislature eyes changing Medicaid eligibility rules for people with intellectual disabilities

By Christine Sexton, Florida Phoenix, June 11, 2025

Florida could be poised to make it easier for people with developmental and intellectual disabilities (IDD) to maintain their Medicaid services.

The latest round of budget negotiations between the House and Senate includes a proposal by the House to eliminate a requirement for people with IDD to annually be redetermined eligible for the health care safety net program for the poor, elderly, and disabled.

If approved, once they would be presumptively eligible the rest of their lives unless they no longer qualify for Medicaid or their condition changes.

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Arkansas - My Son Is Counting on Medicaid Work Requirements (Opinion)

By Nick Stehle, The Wall Street Journal, June 6, 2025

Medicaid was created to help people like my son. He is 17, has severe autism and epilepsy, and needs constant attention. Yet thanks to ObamaCare’s Medicaid expansion, he is stuck on a multiyear waiting list for in-home care because able-bodied adults are competing for the same resources. Republicans in the Senate can help states fix this by strengthening the Medicaid work requirements in the One Big Beautiful Bill Act they’re about to pass.

ObamaCare gave states a financial incentive to treat able-bodied adults better than the disabled. The federal government gives states $9 for every $1 they spend on able-bodied adults, but only $1.33 for every dollar spent on children, people with disabilities, pregnant women and seniors. Drawn by the promise of so much federal money, Arkansas’s Democratic governor expanded Medicaid in 2013. The program now covers more than 230,000 able-bodied adults.

Because able-bodied adults bring so much money, Arkansas makes them a priority. We applied for in-home care in 2023, but state officials said it would take 10 years. Democrats are doing everything they can to keep my son on the wait list. They’re trying to frighten Republicans into abandoning work requirements by claiming they’re ineffective, unnecessary and cruel—none of which is true.

In 2018 the Trump administration gave Arkansas a waiver that let it require able-bodied adults without children to work part time as a condition of receiving Medicaid benefits. A federal judge struck down the waiver on procedural grounds 10 months after the policy began to phase in. Yet the work requirement already had strong results.

In less than a year, nearly 18,000 able-bodied adults increased their incomes enough to get off Medicaid. States should encourage people to replace government dependency with financial independence, protecting Medicaid for people like my son. But Democrats and their allies now claim there wasn’t a corresponding increase in the number of people working. They also claim that people left Medicaid because they didn’t know about the work requirement and therefore didn’t fill out the paperwork. All these false claims are intended to convince Republicans that work requirements are difficult for states to administer.

Yet Arkansas thought it was well worth the effort, sending out more than a million letters, emails, text messages and phone calls in 2018 alone to inform recipients about the requirement. And far from not filling out paperwork, fully 87% of the people who were removed from Medicaid had already increased their incomes, moved out of state or otherwise become ineligible for the program. This freed up resources for people like my son. 

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

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

VOR SUPPORTS:

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

To protect benefits provided under Social Security, Medicare, and any other program of benefits administered by the Social Security Administration or the Centers for Medicare and Medicaid Services. 

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

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

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

Accelerating Kids' Access to Care ActTo amend titles XIX and XXI of the Social Security Act to streamline the enrollment process for eligible out-of-state providers under Medicaid and CHIP.

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

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

S.779 & H.R.1735 - Sen. Alex Padilla (D-CA) & Rep. August Pfluger (R-TX)

To amend title XIX of the Public Health Service Act to provide for prevention and early intervention services under the Block Grants for Community Mental Health Services program

H.R.2491 & S.1227 - Rep Kat Cammack (R-FL) & Sen. Edward Markey (D-MA)

To require the Administrator of the Centers for Medicare & Medicaid Services and the Commissioner of Social Security to review and simplify the processes, procedures, forms, and communications for family caregivers to assist individuals in establishing eligibility for, enrolling in, and maintaining and utilizing coverage and benefits under the Medicare, Medicaid, CHIP, and Social Security programs



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

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

H.R.1262 & S.932 - Rep. Michael McCaul (R-TX) and Sen. Markwayne Mullin (R-OK) "Give Kids A Chance Act" - To amend the Federal Food, Drug, and Cosmetic Act with respect to molecularly targeted pediatric cancer investigations. This bill would renew research into pediatric cancers and includes increasing funding for rare diseases, some of which cause Intellual and developmental disabilities and autism.  

VOR OPPOSES:

H.R.1 - The One Big Beautiful Bill Act - Rep. Jody Arrington (R-TX) This bill contains provisions to make drastic cuts to Medicaid. The consequences of these cuts could impact HCBS services, further destabilize the DSP workforce, and even impact ICF services. In addition, the bill would add $2.4 billion to the deficit over ten years, which could result in further cuts to safety net programs, including Medicaid, Medicare, and Social Security, in the years to come.

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.