October 10, 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.

IT'S OCTOBER!

Cooler temperatures, crisp air, falling leaves, carving pumpkins, apple cider, flannel shirts, Trick or Treat, and

VOR's Annual Fall Fundraising Campaign!

This is the most important time of year for our fundraising.

Most of our membership renewals and donations

will come in the next three months.

So this is when we start gathering our nuts for the Winter.

It's Make-It-Or-Break-It Season for VOR.

Over the next three months, we promise to send you a multitude of reasons to donate, to renew your membership, to make end-of-year tax deductions,

to Give us a Tuesday, remember our families during the holidays, share with you the joys and sorrows that bring us together for this important, important cause and to celebrate the good work we do together!

We will try to make our campaigns enjoyable, interesting, touching, and inspiring.

VOR Podcasts!

Hosted by Casey Henry and Brenna Redfearn

on our YouTube page!

Please Share Your Personal Stories!

VOR is about families. Families like yours. Families like mine.

Every family's story is unique.

And every one of our families have shared paths, hopes, challenges, moments of doubt, and moments of joy.

Personal stories are the lifeblood of advocacy.

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

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

To share your story with us, please send an email to hdwyervor@gmail.com

Supreme Court To Weigh How Intellectual Disability Is Defined

By Michelle Diament, Disability Scoop, October 9, 2025

Disability advocates are speaking out as the U.S. Supreme Court prepares to take on a case that hinges on whether a diagnosis of intellectual disability should be based on more than an IQ score.

The high court is expected to hear a case known as Hamm v. Smith during its current term, which kicked off this month.

The case centers on whether Joseph Clifton Smith, who was convicted of capital murder, has intellectual disability. Smith has taken five IQ tests, with scores ranging from 72 to 78. The state of Alabama contends that Smith should be eligible for execution since his IQ scores are consistently over 70, but attorneys for Smith argue that given how low his scores are, the court should consider additional evidence.

In 2002, the Supreme Court established in Atkins v. Virginia that executing people with intellectual disabilities is cruel and unusual punishment and violates the Eighth Amendment. Subsequent cases have validated that decision and reinforced that clinical standards should be used to determine who falls into this category rather than relying on an IQ score alone.

Now advocates are warning that the standard is in question and that a Supreme Court decision could potentially lead to implications beyond death penalty cases.

“Alabama is asking the court to erase that precedent and focus exclusively on IQ scores in evaluating whether a person has an intellectual disability,” said Shira Wakschlag, senior executive officer of legal advocacy and general counsel for The Arc of the United States. “The state’s request would upend decades of precedent, ignore science and put people with intellectual disability at risk of unlawful execution.”

The Arc along with the American Association on Intellectual and Developmental Disabilities, the Bazelon Center for Mental Health Law and the National Disability Rights Network filed an amicus brief in the case urging the court to rely on an established clinical framework in determining intellectual disability. This approach evaluates whether a person has significant limitations in intellectual functioning and adaptive functioning that arose before adulthood.

“This framework is the product of hundreds of thousands of hours of scientific research, review, clinical observation, and practical experience,” the brief states. “Courts and other decision-makers have long relied on this diagnostic framework as the established method for obtaining an accurate diagnosis in order to address a number of different clinical and legal issues.”

Margaret A. Nygren, executive director and CEO of the American Association on Intellectual and Developmental Disabilities, said the current case is specifically focused on how states should consider IQ scores when there is a claim that an individual should be barred from execution due to intellectual disability, an issue affecting very few people. But, she noted that a new Supreme Court ruling could create a precedent that is cited in future legal proceedings on other matters.

“The law would prefer a one-size fits all answer to the question of what to do when there are several IQ scores, or any scores with ranges that fall just above and below the diagnostic threshold,” Nygren said.

“Sometimes the correct answer really is, ‘it depends.'”

Continued

How SNAP and Medicaid Changes Will Impact State Education Budgets

Less federal spending on these programs could have implications for state and local school budgets.

By Emily Katz Sayag, National Conference of State Legislators October 3, 2025      

The domestic policy law signed by President Trump this summer brings significant changes to Medicaid and SNAP by reducing federal spending on these programs by more than $1 trillion over the next decade.

Some of the spending reductions of $911 billion for Medicaid and $186 billion for SNAP will be achieved by shifting program costs to states, especially for SNAP. However, most Medicaid spending reductions will be achieved through stricter eligibility requirements and other programmatic changes. Many of these changes may not impose direct costs on states, but they could present complications as states craft their budgets in the coming years.

When states experience fiscal pressure, education spending is often the centerpiece of budget conversations as K-12 education, Medicaid and higher education are the three largest state expenditures, respectively. Higher education, in particular, is often referred to as the “balance wheel” of budgets.

In addition to state budget impacts, the changes to Medicaid and SNAP could have implications for local school budgets. SNAP participation often certifies student eligibility for free and reduced-price school meals, which is in turn frequently used as a proxy for low-income status in state school funding formulas. Many schools also receive Medicaid reimbursements for school-based services.

Predicting state fiscal conditions always presents a challenge, but it’s especially difficult with these changes. Many of the key provisions phase in over time, giving states an opportunity to plan. Responses will vary considerably by state, and the interactive effects of policy choices could offset or amplify fiscal impacts.

Medicaid Changes and State Budgets

Medicaid accounts for over half of federal funds received by states, according to the National Association of State Budget Officers. Reductions in federal Medicaid funding are likely to exert pressure on other state expenditures, particularly in education.

The new law reduces federal Medicaid spending by almost $1 trillion dollars, primarily by limiting eligibility, limiting state reliance on provider taxes, which are used to finance the state’s share of Medicaid expenses, and reducing provider payments. Every state is likely to see a reduction in federal Medicaid funding, ranging from 4% to 19%, according to KFF.

The fiscal impact will vary widely based on each state’s unique context and the state’s response to federal changes. Limiting eligibility and reducing provider payments in Medicaid may shrink the program’s budgetary footprint in the state. But limits on state financing through provider taxes shifts costs to states and exerts additional pressure onto the state general fund and local sources of funding, according to the Government Accountability Office.

The timing also matters. Most limits on Medicaid eligibility go into effect in October 2026 or January 2027. Limits on provider taxes and provider payments begin in January 2028 and grow in magnitude over time.

It is highly likely that states will be grappling with shifting budget dynamics over the next five to 10 years. State legislatures and governor’s offices may consider options to raise revenue or cut costs across programs to manage those dynamics. But the magnitude of state budget impacts and the necessary responses will be state-specific and remain unclear.

Medicaid Changes and School Budgets

The new law does not change the way states cover and pay for Medicaid services in schools. However, changes to student Medicaid eligibility and potential cost pressures on the state share of Medicaid spending could impact school budgets.

Medicaid reports that it spends about $7.5 billion on school-based services annually, which makes it the fourth-largest federal funding stream for districts. Schools use Medicaid to provide a variety of school-based health, mental health and special education services.

Federal funding is automatically available for services provided to Medicaid-eligible students with individualized education plans, or IEPs. States can choose whether to cover services provided to all other Medicaid-eligible students. Currently, at least 25 states cover school-based services beyond those available to Medicaid-eligible students with IEPs.

Medicaid is a particularly important source of funding for special education. Schools are required to provide educationally and medically necessary services to students based on their IEPs. If a student is not enrolled in Medicaid, or if the school-based services for Medicaid-enrolled children without IEPs are not covered by the state, then the district must cover the cost of services.

If budget pressures result in state Medicaid programs limiting or reversing coverage of school-based services for students without IEPs, then school districts could see an increase in costs to provide school-based services.

Medicaid Eligibility

The new law also changes immigrant eligibility for the Medicaid program, which could reduce the number of Medicaid-eligible students. Starting Oct. 1, 2026, students who are asylees, refugees, victims of domestic violence or human trafficking, or who have certain other immigration statuses, will no qualify for Medicaid coverage.

Fewer students covered by Medicaid could lead to increased costs for districts if they continue to provide services to students not eligible for Medicaid. While this may particularly impact school districts in the 25 states that cover school-based services for all Medicaid-eligible students, any school district that serves immigrant students with IEPs may also be affected.

Read the full article here

The above article refers to a KFF report from last July on the Congressional Budget Office's scoring of the One Big Beautiful Bill Act, signed into law by President Trump on July 4, 2025. This report contains valuable information on the Medicaid cuts in the law and is a good reference for VOR members.

Allocating CBO’s Estimates of Federal Medicaid Spending Reductions Across the States: Enacted Reconciliation Package

By Rhiannon Euhus, Elizabeth Williams, Alice Burns, and Robin Rudowitz, KFF, July 23, 2025

On July 4, President Trump signed into law a budget reconciliation package once called the “One Big, Beautiful Bill” that made major reductions in federal health care spending to offset part of the costs of extending expiring tax cuts. The Congressional Budget Office’s (CBO) latest cost estimate shows that the reconciliation package would reduce federal Medicaid spending over a decade by an estimated $911 billion (after accounting for interactions that produce overlapping reductions across different provisions of the law) and increase the number of uninsured people by 10 million. Building on prior KFF analysis of the House-passed reconciliation bill, this analysis allocates CBO’s federal spending reductions in the enacted reconciliation package across the states. The Medicaid reconciliation provisions are numerous and complicated, but the majority of federal savings stem from work requirements for the Affordable Care Act (ACA) expansion group, limiting states’ ability to raise the state share of Medicaid revenues through provider taxes, restricting state-directed payments to hospitals, nursing facilities, and other providers, and increasing barriers to enrolling in and renewing Medicaid coverage.

Key Take-Aways

• After accounting for CBO’s estimated interactions, KFF estimates that the enacted reconciliation package would reduce federal Medicaid spending by $911 billion. (Without accounting for interactions, the total is $990 billion, see Methods).
• The five biggest sources of Medicaid savings in the reconciliation package sum to $851 billion in savings, which is 86% of the gross savings (before accounting for interactions) and include:
• Mandating that adults who are eligible for Medicaid through the ACA expansion meet work and reporting requirements ($326 billion),
• Establishing a moratorium on new or increased provider taxes and reducing existing provider taxes in expansion states ($191 billion),
• Revising the payment limit for state directed payments ($149 billion),
• Increasing the frequency of eligibility redeterminations for the ACA expansion group ($63 billion). 
• Provisions that would only apply to states that have adopted the ACA expansion account for $526 billion, over half of the total gross federal spending reductions.
• Over three-quarters (76%) of the ten-year reductions in federal Medicaid spending in the reconciliation package would occur in the final five years of the period. While policy effects do typically compound overtime, many of the health care spending reductions are also backloaded and occur from 2030 through 2034.
• Federal cuts to states of $911 billion over 10 years would represent 14% of federal spending on Medicaid over the period. The spending cuts vary by state; Louisiana, Illinois, Nevada, and Oregon are the most heavily affected with spending cuts of 19% or more over the period.

Read the full article here

Oz speaks out about shutdown, Medicaid cuts, Medicare Advantage audits and more

Six takeaways from the CMS administrator’s newsy appearance at a D.C. think tank.

By Rebecca Pifer, Health Care Dive, October 7, 2025

CMS Administrator Dr. Mehmet Oz defended controversial policy decisions from Republicans in Washington during an appearance at the Aspen Institute in Washington, D.C. Monday, arguing that cuts to the safety-net Medicaid program are not really cuts and stumping for a clean funding bill to reopen the government.

That’s despite looming premium pain for people on Affordable Care Act plans — a key sticking point fueling the funding impasse on Capitol Hill.

3. “No cut to Medicaid” in Big Beautiful Bill

The GOP’s sweeping tax and policy bill signed into law in July includes arguably the most significant overhaul of Medicaid in the program’s 60-year history. The legislation implements work requirements tying Medicaid eligibility to productivity, restricts a financing mechanism that increases federal Medicaid funding to states and hikes eligibility verification requirements, among other changes.

All told, the so-called “Big Beautiful Bill” will reduce federal Medicaid spending by almost $1 trillion over a decade, and increase the number of uninsured individuals by 10 million, according to the CBO. Some 7.5 million people will lose coverage due to changes to Medicaid alone.

The law is the largest rollback of federal support for healthcare in U.S. history, according to the Center for Medicare Advocacy.

But “there is no cut to Medicaid,” Oz said. “It’s not that we’re in any way cutting Medicaid.”

The Trump administration and Republicans on Capitol Hill have attempted to present the law as preserving Medicaid for the future by reorienting the program towards the most vulnerable Americans, a message that’s largely not landing with the American public. Recent polls show that the law is broadly unpopular.

Still, Oz pointed to the $50 billion allocated for rural health transformation in the legislation, which he said would reinvigorate healthcare in traditionally underfunded areas. (Providers have argued that fund is a drop in the bucket compared to how much they’ll lose from Medicaid cuts in the “Big Beautiful Bill.”)

Oz also said that the law’s controversial work requirement, which requires adult beneficiaries to log at least 80 hours of work, volunteering or education each month in order to qualify for Medicaid coverage, is a strategy to bolster US economy by getting more people to work — and work for longer.

“The beauty is we get people healthy so they can contribute to society. That’s the unbelievable return on investment,” Oz said, adding later: “As I look at the work requirement, it is part of this administration’s passionate desire to get people to believe they have agency over their future.”

But work requirements, which have been trialed in a small handful of states, have largely not achieved conservatives’ goals. Historically, work requirements have resulted in eligible individuals losing the safety-net coverage because of issues documenting their compliance, with no corresponding uptick in employment.

Research also shows that the vast majority of Medicaid beneficiaries already work or would qualify for some of the exemptions in the law.

Read the full article here

The following article was written by Mary Lazare, the Acting Administrator at the Administration for Community Living (ACL).

The law that Acting Administrator Lazare refers to as the "Working Families Tax Cut Act" is better known by its original name, the "One Big Beautiful Bill Act", which was signed into law by President Trump last July.

One should note that the $6.5 billion unlocked for Home and Community Based Services to which she refers, amounts to less than 1% of the nearly $1 trillion that has been cut from Medicaid programs in the bill.

Working Families Tax Cut a historic opportunity for the disabled | Opinion  

By Mary Lazare, The South Florida Sun Sentinel, October 5, 2025

Thirty-five years ago, America significantly improved and enhanced the lives of people living with disabilities with the words of the Americans with Disabilities Act (ADA): “the Nation’s proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, and independent living.”

Under the leadership of Secretary Robert F. Kennedy, Jr., the U.S. Department of Health and Human Services (HHS) remains deeply committed to honoring these goals.

From the Centers for Medicare & Medicaid Services’ (CMS) tackling of health care complexities to the Administration for Community Living’s (ACL) support for state-based disability services and councils, HHS continues to safeguard and advance the equality, independence and well-being of the millions of Americans living with disabilities through its funding of critical programs and support services.

President Trump’s Working Families Tax Cut Act galvanizes that commitment and reaffirms the promise ACL and CMS make to disabled people: We will always support you.

The vitality and livelihoods of Americans with disabilities have too often become afterthoughts in the minds of policymakers. Not so with the Working Families Tax Cut Act. Its critical reforms were crafted to strengthen Medicaid and preserve the program for Americans with disabilities and the vulnerable populations for whom the program was designed.

Medicaid is the largest funder of home and community-based services for older adults and people with disabilities, whereas ACL awards grants to states and organizations that provide these services and currently delivers comprehensive services to over 10 million Americans with physical, mental and developmental disabilities. The program was originally designed to specifically serve at-risk populations: individuals with disabilities, children, low-income seniors and single mothers.

Over time, however, political pressure and special interests have expanded Medicaid to cover additional groups and offer ancillary benefits — expansions that have diverted limited resources away from those who need them most. Most notably, Obamacare expanded Medicaid eligibility to able-bodied adults without dependents, which strained the program’s limited resources (more services to more people were mandated, but the share of Medicaid providers remained largely unchanged). Within years, more than 15 million able-bodied enrollees had entered the system, crowding out the populations Medicaid was originally intended to serve.

Instead of raising barriers to care for those who cannot be expected to care for themselves, the Working Families Tax Cut Act invites able-bodied Americans to participate in society and enjoy the fruits of their own labor through the exercise of their inalienable right to pursue happiness. For Americans with disabilities, the Working Families Tax Cut Act lowers barriers to care, unlocking over $6.5 billion in home and community-based services, allowing disabled Americans to access comprehensive, person-centered support and advancing their independence from restricted institutional care.

The Working Families Tax Cut Act’s targeted, meaningful investments contrast previous administrations’ bloated handouts to able-bodied, self-sufficient adults at the expense of Americans with disabilities with nowhere else to turn. The Working Families Tax Cut Act’s community engagement requirements provision for Medicaid eligibility is a victory for Americans with disabilities who depend on these benefits for their day-to-day livelihood.

The Working Families Tax Cut Act slashes years of waste, fraud and abuse and ensures that Medicaid resources are directed toward those with the greatest need. These commonsense, essential changes make significant steps toward solving the nationwide access-to-care crisis facing Americans with disabilities. Passage of the Working Families Tax Cut Act secured access to new federal resources for Americans with disabilities while empowering states to better address their unique needs and expand opportunities for independent and community living. It’s a win-win.

As Secretary Kennedy noted at the Department’s celebration of the ADA’s 35th anniversary, all Americans have inherent value, dignity and unique perspectives and talents that make our nation stronger. Alongside Congress and the president, CMS and ACL will continue to safeguard the inclusion, independence and welfare of Americans with disabilities by removing obstacles and creating opportunities. Together, we can foster a healthy, flourishing society for all Americans.

The editorial from the ACL Acting Administrator Mary Lazare may be found here

The Looming $661 Billion Cut to Hospitals

By Darbin Wofford, Third Way, October 8, 2025

The cuts to Medicaid and failure to extend the Affordable Care Act tax credits will not only raise health care prices for Americans and take away health coverage—they will also decimate health care providers. No one is poised to see more of an impact than hospitals, and the numbers are shocking. In this memo, we show how hospitals are slated to see $661 billion in cuts over the next decade as a result of Republican actions. Of that amount, rural hospitals are on pace to see cuts of $125 billion.

The $661 Billion Cut to Hospitals

Broad Republican cuts to health care will have a dramatic effect on US hospitals over the next decade. Specifically, hospitals will see deep cuts from the following:

1. ACA Tax Credit Expiration: If Republicans let the ACA tax credits expire, hospitals will see a $14.2 billion loss in 2026 from direct cuts and coverage losses of the patients they serve. In addition, hospitals will lose $2.2 billion in uncompensated care costs from those who lose coverage. In total, hospitals will collectively lose $16.4 billion in revenue in 2026. Over the decade, hospitals will lose $125 billion.
2. Medicaid Cuts & ACA Changes: Earlier this year, Republicans cut Medicaid by nearly $1 trillion and made harmful changes to the ACA Marketplaces. The law included several provisions that will reduce the number of people on Medicaid and the ACA by 10 million through burdensome work requirements and bureaucratic enrollment verification processes. From the Medicaid cuts and ACA changes, hospitals will lose $384 billion over a decade.
3. Medicare Sequestration: Due to the $2.3 trillion increase to the deficit from the Republican tax bill, Medicare is headed towards mandatory cuts, known as “sequestration,” that would cut the program by $491 billion over the next 10 years. Without congressional action, all Medicare spending will be cut by 4% across the board. Because 31% of Medicare funding is allocated towards hospital payments, this would mean a $152 billion cut to American hospitals.

Continued

Arkansas governor’s pay plan boosts applications for developmental disabilities services jobs, but staffing challenges remain

By Nathan Ansell, Arkansas Democrat-Gazette, October 8, 2025

Gov. Sarah Huckabee Sanders' new pay plan for state employees has led to increased applications to the Department of Human Services' Division of Developmental Disabilities Services, but other concerns have limited how quickly the division can fill the positions, a pair of department officials told lawmakers Wednesday.

Jennifer Brezee, the division's director, and Melissa Weatherton, DHS's director of specialty Medicaid services, discussed the matter during a joint meeting of the Senate and House Public Health, Welfare and Labor committees.

According to Weatherton, the Developmental Disabilities Division entered the fiscal year able to afford 1,965 budgeted positions at the state's five human development centers, Division of Developmental Disabilities Services-run facilities which house and provide services to Arkansans with intellectual and developmental disabilities. Brezee said the department could put people in unbudgeted roles, but that was usually intended "to keep the process moving a lot quicker."

"With the unbudgeted positions, we were able, I think, to more quickly advertise and get those positions in our system that we use to manage those," Brezee said. "With the implementation of the pay plan, we had to pause and make sure that all of our people in those unbudgeted positions were put under a budgeted position."

State Rep. Jack Ladyman, R-Jonesboro, said committee members had received many calls about staffing at the human development centers. Ladyman asked about the processes for filling vacant positions, particularly jobs directly providing services that he said may need to be prioritized.

Brezee said it takes about five business days for a vacated position to "clear out from the system," after which human resources staff create a requisition to be brought up at an agency-wide weekly meeting. After that, she added, positions approved to be filled are returned to the human development center's recruiting manager.

"But if you've got direct care people in the home, and they can't fill that position for five days, and they don't have these extra people that they used to have, that's a problem," Ladyman said. Later in the meeting, he attempted to initiate a motion to exempt "direct care" vacancies from such hiring processes, to which Rep. Jeff Wardlaw, R-Hermitage, chairman of the House committee, responded he would check with staff on the legality of doing so.

Weatherton said there was still a need for approximately 150 additional staff members across the five human development centers, many of which would be certified nurse aides -- a position which had its salary raised in the pay plan.

Following a line of questioning from Rep. Lee Johnson, R-Greenwood, Weatherton told the committee that when a Division of Developmental Disabilities Services employee outside of the human development centers was leaving, "We're not backfilling it, we're focusing all of our efforts on filling the HDCs."

Wardlaw said that response indicated the Arkansas Legislature had not allocated enough money for the positions to be filled.

"There ain't enough money ... and leading legislators to believe we put enough money there is not the way this needs to leave, it needs more money to fill those budgeted positions," Wardlaw said. "If we're taking a position from the department and filling the positions over at HDCs, it's a budget problem."

Two members of the public also spoke at the meeting, both of whom have sons in human development centers. Katrina Robertson, president of the Booneville Human Development Center Families and Friends Association, told the committee about what the center had done for Noah, her 22-year-old son with a developmental disability, calling the facility "a godsend to Noah and our family life."

After Noah told her he didn't have a job anymore, Robertson said, she investigated to find out the vocational and training areas had been "closed indefinitely," with staff reassigned to direct care responsibilities due to open positions.

"We're trying to pay the same number of people a higher number of pay, based on last year's budget," Robertson said. "Our CNAs and direct care workers absolutely deserved this pay raise, but overall, budgets must increase to sustain those pay raises to have proper support and staffing levels.

"These individuals require much more care than the bare minimum, many of them one-on-one. This vulnerable population, they depend on us."

Read the full article here

Following Medicaid Cuts, Californians With Intellectual, Developmental Disabilities Face Uncertain Future

By Keith Mizuguchi, KQED (NPR), October 6, 2025

A fall-themed Snoopy jazz playlist hums throughout the art studio, rising just above the soft scratching of brushes on canvas. One person uses purple paint to carefully outline Squidward, his fourth SpongeBob-themed painting. Another artist prefers to paint airplanes, having previously worked at the airport. Ron Ansley’s specialty is abstract paintings, often inspired by Tiggy, his cat who passed away. Today, he’s using oil pastels to outline an illustration of plates and cups sprouting cactuses. “Making art is what I call a relaxation stress breaker,” Ansley said. “Mostly, I just like to express myself in painting.”

Ansley, 64, has autism and several physical disabilities, including deep vein thrombosis and cataracts. Since 2019, he’s been attending art classes three days a week at The Arc San Francisco. As the local chapter of the national Arc organization, the nonprofit serves about 800 adults with intellectual and developmental disabilities in the Bay Area. In addition to art, music and cooking classes, The Arc helps clients find jobs, pursue higher education and navigate their health care. Now, programs like these are at risk nationwide. When President Donald Trump signed into law his sweeping policy bill, dubbed the One Big Beautiful Bill, it included roughly $1 trillion in federal Medicaid cuts over the next decade.

Medicaid, called Medi-Cal in California, is best known for helping low-income people access health care, but it also funds services for people with disabilities. The White House website claims Trump’s megabill won’t impact Americans with disabilities: “Rest assured, those with disabilities receiving Medicaid will receive no loss or change in coverage.”

Policy experts, however, say that while nothing in the bill specifically targets disability services, they’re unlikely to be left unscathed. “Because people with disabilities are more likely to depend on Medi-Cal compared to the general population, we would argue that any cuts to this funding would disproportionately harm folks with a disability,” said Adriana Ramos-Yamamoto, a senior policy analyst at the California Budget and Policy Center. “They’re essentially destabilizing a whole program and system that supports these communities.”

The California Department of Health Care Services (DHCS) estimates the state could lose $30 billion a year in federal MediCal funding for the next decade. It falls to state legislators to close that gap when they take on next year’s budget. Ramos-Yamamoto expects the state will drain money from a benefit known as home- and community-based care, which serves more than 900,000 Californians, according to 2022 data from DHCS.

Read the article here

“My child was screaming like crazy:” West Texas parents outraged over alleged abuse of kids

By Carlos Nogueras Ramos, The Texas Tribune, October 9, 2025

In early September, about two weeks after school started, Daniela and Alfredo Santos got a call from Midland Independent School District’s Special Education Director Lynda Rhodes.

The Midland school district was investigating reports of abuse at the school that involved their 4-year-old daughter and her classmates, all of whom have special needs and live with disabilities. The students’ instructors had allegedly restrained them to their chairs for longer than they should have, district officials told them.

The unsettling scenes were caught on camera and revealed details district officials omitted in earlier phone calls, the parents said, declining to elaborate further due to a non-disclosure agreement the district made them sign before viewing the video.

“My child was screaming like crazy, crying. You can tell she needed help,” Daniela Santos said in her first public interview with The Texas Tribune. “And no one helped her.”

In the wake of the investigation, six teachers have resigned. And earlier this week, the school board also fired Cynthia Rodriguez, the school’s principal, over the abuse allegations. District officials have maintained they took the appropriate steps when they learned of the incidents in reporting the issue to the state.

Meanwhile, advocates for students with disabilities say the decade-old law that put cameras in classrooms with special needs to prevent such abuse must be revisited. That includes the state lawmaker who wrote the law.

Several of the families have demanded that the teachers be prosecuted. However, the district's attorney told parents there wasn't enough evidence to criminally charge the instructors. Fifteen families have taken matters into their own hands, suing the district for $500,000 for each student.

The lawsuit alleges that the district ignored “evidence of abuse” captured by cameras in the classroom, and “knowingly failed to report this abuse and neglect.”

Life skills classes, like the one Daniela Santos’ daughter is enrolled in, help students who are diagnosed with a severe developmental disability. They help with communication, socializing and self-care, including feeding, dressing, and learning to use the restroom. The goal is to teach students to live as independently as possible, said David DeMatthews, a professor at UT-Austin College of Education. Students start as early as four and last there until they turn 21.

School districts determine how special education courses are taught and must comply with the Individuals with Disabilities Education Act, a federal law. In the classroom, there should be one special education instructor with at least two aids, DeMatthews said.

Texas has a dearth of qualified special education teachers, DeMatthews said. And the instructors the state does find are often unequipped to decide when to use restraints.

“We have massive workforce problems in our public schools,” he said. “I would just be very doubtful that people are appropriately trained in specific areas when this historically has just been a problem.”

Read the full article here

West Virginia increases rates for home- and community-based service providers

From the staff at WV News, October 4, 2025

Gov. Patrick Morrisey and the West Virginia Department of Human Services, Bureau for Medical Services, have announced new rate increases for providers of home and community-based services.

The rate increases, effective Oct. 1, are for three Medicaid waiver programs: The Aged and Disabled Waiver (ADW) at 6%, the Intellectual/Developmental Disabilities Waiver (IDDW) at 9% and the Traumatic Brain Injury Waiver (TBIW) at 6%.

This adjustment follows a 15% increase made in October 2024, continuing efforts to support critical services for residents who are aged and disabled, those with intellectual and developmental disabilities and individuals living with traumatic brain injuries.

"This rate increase reflects our commitment to protect and uplift West Virginia's most vulnerable residents," Morrisey said. "My administration will continue making investments in our state's healthcare system to increase access and improve outcomes for West Virginians."

Cindy Beane, DoHS Bureau for Medical Services commissioner, added, “This adjustment is another important step for West Virginia Medicaid. Providers are the backbone of these programs, and these rate increases reflect their essential role in serving seniors, individuals with disabilities, and those recovering from traumatic brain injuries.”

Read the full article here

The Case for Splitting Up the Autism Spectrum

Science recognizes autism subtypes - the DSM should, too

By Alison Singer, MedPage Today, October 10, 2025

Since 2013, when the DSM-5 collapsed five autism subtypes into the single diagnosis of "autism spectrum disorder (ASD)," we've treated autism like a monolith. Maybe that made sense when our tools were blunt and our data sparse. But today, the science tells a different story, and the consequences of ignoring it are devastating for families like mine, whose children with profound autism are being left out of the very programs meant to serve them.

My daughter Jodie is 28. She is beautiful, loving, minimally verbal, has severe intellectual disability, and needs 24-hour supervision to stay safe. Her autism diagnosis should mean access to specialized programs tailored to her needs. Instead, we've found ourselves turned away from programs that say her behaviors are "too challenging." Programs designed specifically for autistic children often excluded the most profoundly affected because they could be filled with autistic children who were easier to manage.

The data here are clear: "autism" is not one thing.

Recent large-scale genetic and phenotypic studies show that there are biologically and clinically distinct subtypes of autism. Researchers are identifying clusters of autistic individuals who differ systematically in their genetics, developmental trajectories, medical comorbidities, and lifelong support needs. In other words, science now validates what parents have known intuitively for decades: there are meaningful differences within the spectrum.

One of the most urgent distinctions is between those who can live independently (or semi-independently) and those, like my daughter, who require continuous, intensive support. The Lancet Commission

on the future of care and clinical research in autism, along with other expert groups, has embraced the term "profound autism" to describe this subgroup, and the CDC has reported that 27% of people with autism meet the Lancet criteria for profound autism. But the DSM does not distinguish profound autism as a separate diagnosis.

This isn't about labeling for labeling's sake. It's about clarity -- clarity that drives better policy, training, research, and funding.

Our current one-size-fits-all diagnosis hides the reality that some individuals' needs are so complex that they simply don't fit within the programs designed for the broader "autism" population. Jodie's reality of seizures, self-injurious behaviors, and severe communication challenges bears little resemblance to that of a quirky, highly intelligent, verbal undergrad majoring in computer science who also happens to have an ASD diagnosis. Yet, they share the same diagnostic label. That mismatch creates confusion for policymakers and service providers and, ultimately, denies profoundly autistic people the support they need.

Recognizing "profound autism" formally is not about stigma; it's about precision and fairness. Medicine has evolved by acknowledging heterogeneity. For example, we distinguish type 1 from type 2 diabetes and recognize different subtypes of breast cancer. Once we accepted those distinctions, treatment improved. The same logic must apply to autism. When we acknowledge that not all autism is the same, we can develop interventions, trainings, and funding streams tailored to each population's actual needs.

Practically, what would change? If we officially recognized a "profound" subtype, eligibility criteria for specialized schools, housing, and other services could incorporate measures of adaptive functioning, medical complexity, and communication ability. Staff training could expand to address the realities of managing severe behavioral challenges like self-injury and co-occurring medical issues like epilepsy. And research dollars could finally target the therapies, technologies, and support models that benefit those most severely affected.

Some worry that splitting the spectrum could fracture our community. I understand that fear. I've been part of the autism advocacy world for more than two decades, and I've worked alongside incredible self-advocates who can speak for themselves. But my daughter and thousands like her cannot. Their voices are literally absent from our conversations. We need to create space for all forms of autism to be seen and supported, and we must stop pretending that one label can meet everyone's needs.

The science is clear, and the lived experience of families like mine is even clearer. Large consortium studies and clustering analyses are converging on reproducible biological and behavioral subgroups. Policymakers, clinicians, and advocates must catch up. The term "profound autism" is not divisive but descriptive. It shines a spotlight on a group of individuals who have been invisible for too long.

For Jodie, and for every family like mine, splitting the spectrum isn't an abstract scientific debate. It's a moral imperative. We can't design effective programs or equitable policies if we refuse to see the real diversity and disparity within autism itself.

Read the article here

Alison Singer is president of the Autism Science Foundation and the parent of a daughter with profound autism.

Tylenol use after circumcision ‘highly likely’ linked to autism, RFK Jr. says in wild new claim 

By Anna Young and Josh Christenson, The New York Post, October 9, 2025

Health and Human Services Secretary Robert F. Kennedy Jr. stunningly claimed Thursday there may be a link between circumcision and autism — due to distribution of Tylenol to infants following the procedure.

“There’s two studies which show children who are circumcised early have double the rate of autism, it’s highly likely, because they were given Tylenol,” Kennedy told President Trump during a cabinet meeting.

Kennedy didn’t specify the research to which he was referring, but a 2015 study out of Denmark that tracked nearly 343,000 Gen Z boys suggested that circumcised males were more likely to develop autism before the age of 10 compared to their uncircumcised peers.

However, some critics called the research “flawed” and said the study authors should have examined other painful conditions such as urinary tract infections, which are common in young children.

Another possible explanation for the purported link is that boys who undergo circumcision are more likely to interact with health care workers, leading to a higher detection rate of autism.

A second, smaller 2024 study out of Ireland found that circumcised boys with autism “exhibited significant improvements” in irritability, sensory issues and repetitive behavior compared to their uncircumcised peers.

The researchers also reported that urinary symptoms such as pain, urgency and the need to go at night were “significantly reduced.”

Rabbi Nechemia Markovits, a fifth-generation certified mohel and circumcision specialist based in Brooklyn who’s performed the ritual for nearly 40 years, said he has never needed to recommend Tylenol after performing the procedure on a newborn. 

“The procedure is quick and well-tolerated,” he told The Post.

Kennedy’s remarks took place two weeks after President Trump declared that acetaminophen, sold under the brand name Tylenol, is “not good” for pregnant women unless they have a high fever — warning it could increase the baby’s risk of developing autism. 

While Trump’s comments sparked swift backlash from women and the medical community, he doubled down on his position following Kennedy’s wild claim Thursday.

“There’s a tremendous amount of proof or evidence, I would say as a non-doctor,” said the president, adding that he studied the controversial topic “a long time ago.”

Read the full article here

Inside the High-Stakes Battle Over Vaccine Injury Compensation, Autism, and Public Trust

By Celine Gounder, KFF Health News, October 6, 2025

Department of Health and Human Services Secretary Robert F. Kennedy Jr. has floated a seismic idea: adding autism to the list of conditions covered by the Vaccine Injury Compensation Program. The program, known as VICP, provides a system for families to file claims against vaccine providers in cases in which they experience severe side effects. Kennedy has also suggested broadening the definitions of two serious brain conditions — encephalopathy and encephalitis — so that autism cases could qualify.

Either move, experts warn, would unleash a flood of claims, threatening the program’s financial stability and handing vaccine opponents a powerful new talking point.

Legally, HHS “is required to undergo notice and comment rulemaking to revise the table,” said Richard Hughes, a law firm partner who teaches at George Washington University. The “table” is a list of specific injuries that the U.S. government accepts as presumed to be caused by a vaccine if those injuries occur within a certain time window. If someone can show they meet the criteria, they have a simpler path to securing compensation without having to prove fault. Autism is not in the table because a link between vaccines and autism has been thoroughly debunked.

If autism is added, Hughes explained, the VICP could face “an exorbitant number of claims that would threaten the viability of the program.”

Asked about its possible plans, an HHS spokesperson told CBS News the agency does not comment on future or potential policy decisions.

Carole Johnson, former administrator of the Health Resources and Services Administration, which oversees VICP, cautioned that the system is already overburdened: “The backlog is not just a function of management, it’s built into the statute itself. That’s important context for any conversation about adding new categories of claims.”

Dorit Reiss, a law professor at the University of California College of the Law-San Francisco, said that any such change would be exploited: “This can, and likely will, be used to cast doubt on vaccines.”

Continued

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VOR SUPPORTS:

H.R.4796 - Rep. Laura Friedman (D-CA) - Restoring Essential Healthcare Act -To amend Public Law 119-21 (The One Big Beautiful Bill Act) to repeal the prohibition on making payments under the Medicaid program to certain entities.

H.R.4807 - Rep Greg Landsman (D-OH) - Protect Our Hospitals Act - To amend Public Law 119-21 to repeal certain changes to provider taxes under the Medicaid program. 

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

H.R.1509 & S.752 - Rep. Lori Trahan (D-MA) & Sen. Chuck Grassley (R-IA)

Accelerating Kids' Access to Care Act -

This bill would amend titles XIX and XXI of the Social Security Act to streamline the enrollment process for eligible out-of-state providers under Medicaid and CHIP, and streamline enrollment under the Medicaid program of certain providers across State lines.

H.R.2598 & S.1277 - Rep Jared Huffman (D-CA) and Sen Chris Van Hollen (D-MD) The IDEA Full Funding Act

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

S.2279 - Sen. Josh Hawley (R-MO)

A bill to repeal the changes to Medicaid State provider tax authority and State directed payments made by the One Big Beautiful Bill Act and provide increased funding for the rural health transformation program.

H.R.1950 - Rep. Mark Pocan (D-WI) - Protect Social Security and Medicare Act

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

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

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

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

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



VOR OPPOSES:

H.R.2743 & S.1332 - Rep. Bobby Scott (D-VA) & Sen. Bernie Sanders (I-VT) Raise the Wage Act - A bill to provide increases to the Federal minimum wage and for other purposes. VOR opposes the provision in this bill that would phase out section 14(c) and sheltered workshops for indiviiduals with I/DD and autism.

S.2438 - Transformation to Competitive Employment Act (Sen. Chris Van Hollen (D-MD) - A bill to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support people with disabilities through competitive integrated employment, to phase out the use of such special certificates, and for other purposes. 

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