October 3, 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!

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We begin this week's Newsletter with articles on autism. Recent comments from the White House and HHS Secretary Robert F. Kennedy, Jr. have brought the country's attention to the subject.



While we do not agree with many of the statements made by this administration, we are grateful that the subject is receiving the attention it deserves. It is our hope that this level of scrutiny will bring back the funding for services and scientific research that have been removed in favor of other budget priorities and speculative theories.

Below are some of the articles that appeared in our inboxes this week.

Should the Autism Spectrum Be Split Apart?

By Areen Ghorayshii, The New York Times, October 1, 2025

Families of people with severe autism say the repeated expansion of the diagnosis pushed them to the sidelines. A new focus on the disorder has opened the way for them to argue their cause.

As a child, Jodie Singer barely spoke. She could repeat words that people said to her or recite the book “Madeline” from beginning to end, but she could not answer yes or no when her mother asked if she wanted juice.

Sometimes she hurt herself, compulsively tearing at the skin and hair on the nape of her neck. She threw tantrums, thrashing and refusing to be comforted.

When she was almost 3, Jodie was given a diagnosis of autism. Now 28, she still speaks only in short, repetitive phrases and requires round-the-clock care, including help eating, getting dressed and using the toilet.

At the time Jodie’s diagnosis was first made, the definition of autism was expanding, as it would continue to do over the next 25 years. Once primarily limited to severely disabled people, autism began to be viewed as a spectrum that included far less impaired children and adults. Along the way, it also became an identity, embraced by college graduates and even by some of the world’s most successful people, like Elon Musk and Bill Gates.

That broadening of the diagnosis, autism experts believe, along with the increasing awareness of the disorder, is largely responsible for the steep rise in autism cases that Health Secretary Robert F. Kennedy Jr. has called “an epidemic” and has attributed to theories of causality that mainstream scientists reject, like vaccines and, more recently, Tylenol.

And the diagnostic expansion has now become a flashpoint in a long-running debate over how autism should be defined, one that has divided parents and activists, ignited social media battles and grown fiercer with Mr. Kennedy’s laser focus on autism.

Speaking of autistic children in the spring, Mr. Kennedy said, “These are kids who will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date.”

His words drew a swift backlash from many autistic adults, who called his characterization of their lives false and dehumanizing. But Jodie’s mother, Alison Singer, said that, though she disagrees with Mr. Kennedy’s views on the causes of autism, his words about the harsh realities of living with the disorder spoke to families like her own.

Now Ms. Singer, who is the head of the Autism Science Foundation, a nonprofit that funds autism research, is one of a group of parents and clinicians who are calling for the autism spectrum diagnosis to effectively be split in two, saying it has become so broad that it is obscuring the experiences of the seriously disabled people it was first meant to describe, like her daughter.

At major autism conferences and in scientific journals, the group has proposed the creation of a separate category, called profound autism, for people with the most severe disabilities.

An estimated one in 31 8-year-olds in the United States has an autism diagnosis, according to the most recent data, up from one in 150 8-year-olds in 2000. While the most severe autism cases account for a small part of that increase, most of the surge reflects a rise in the number of higher-functioning people getting diagnosed.

Parents of children with severe autism say the wider diagnosis has come at a steep cost: Research that includes people with the most significant impairments has declined year over year, even as overall funding for autism research has grown substantially.

And a survey of 800 families, conducted this year by the National Council on Severe Autism, found that 80 percent had been told their children were too disruptive even for classrooms and services tailored to students with autism and other disabilities.

“Autism has become so diluted, we can’t really tell what we’re talking about anymore,” Jill Escher, the founder of the national council who has two adult children with profound autism, said.

Ms. Singer put it more bluntly: “The idea that Elon Musk has the same diagnosis as my daughter,” she said, “is ludicrous.”

Yet many autistic activists strongly object to the idea of splitting the diagnosis, warning that it risks invalidating their own experiences.

The field of psychiatry, they argue, long dismissed people at the milder end of the autism spectrum as merely quirky or difficult, before recognizing that they, too, often required support. Many of the activists who helped change that — pioneers of what is known as the neurodiversity movement — worry that splitting the diagnosis could marginalize people with less visible struggles.

Autism first became a formal diagnosis in the 1980 version of the Diagnostic and Statistical Manual of Mental Disorders, often referred to as the “bible of psychiatry.” Back then, the diagnosis was used to identify children who, by the time they were toddlers, seemed unable to form social attachments and who had severe language deficits or did not speak at all.

Though some of the children could recall facts with astonishing clarity, most had an I.Q. below 70. Many showed self-destructive behaviors, like intentionally banging their heads or hitting themselves, or being aggressive toward others. The disorder, the manual said, was “very rare.”

For Ms. Singer, the first clue that Jodie might be different came at a Mommy and Me class in 1999. She noticed that her daughter did not play with her toys the way the other babies did, instead quietly lining them up and arranging them by color and size. Most noticeable was the fact that Jodie seemed unable to use language to communicate.

Early internet email lists for parents of children with autism were filled with frightening theories about autism’s potential causes. In 1998, Andrew Wakefield published his now-retracted study linking autism to the measles, mumps and rubella vaccine. Online, many parents spoke excitedly about the book “Let Me Hear Your Voice,” written by a mother of a child with autism, which made the unsubstantiated claim that intensive behavioral therapy could lead to a cure.

Ms. Singer quit her job and hired therapists to work with Jodie 40 hours a week. But after two years, although Jodie had learned some basic skills, her autism was unchanged.

“I realized this was going to be lifelong,” Ms. Singer said. The family decided, “We were going to continue to try to help her to be the best Jodie she could be.”

Continued

Autism isn't one disorder, a genetic analysis shows

The new research reinforces how complex the neurodevelopmental disorder is and that there isn’t a single cause. 

By Liz Szabo, NBC News, October 1, 2025

People who learn they have autism after age 6 — the current median age at diagnosis — are often described as having a “milder” form of autism than people diagnosed as toddlers.

A new study challenges that assumption.

A genetic analysis finds that people with autism spectrum disorder diagnosed in late childhood or adolescence actually have “a different form of autism,” not a less severe one, said Varun Warrier, senior author of a study published Wednesday in Nature.

The “genetic profile” of people with late-diagnosis autism actually looks more like depression, attention-deficit/hyperactivity disorder and post-traumatic stress disorder than early childhood autism, said Warrier, an autism researcher at the University of Cambridge.

The study illustrates that autism is not a single condition with one root cause, but rather an umbrella term for a cluster of conditions with similar — although not identical — features, said Geraldine Dawson, founding director of the Duke Center for Autism and Brain Development, who wasn’t involved in the new report.

Alycia Halladay, chief science officer at the Autism Science Foundation, who wasn’t involved in the study, said: “This paper reinforces yet again how complex autism is and how much genetics plays a role not just in a diagnosis but in the features of that diagnosis. There is no one cause of autism, despite claims against Tylenol.”

Authors of the new study analyzed long-term social, emotional and behavioral information about children in the United Kingdom and Australia, as well as genetic data about more than 45,000 autistic people in Europe and the United States.

Different genetic profiles

Researchers didn’t focus on a single gene or even a few genes. Instead, they looked at sets of thousands of genetic variants that together influence particular traits.

While one genetic profile may lead to difficulties with social interactions during the toddler or preschool years, another set of genes may cause an increase in such problems during late childhood and beyond, Warrier said.

The new study suggests that some autistic children “develop differently and may not receive a diagnosis earlier on because their features may not yet have clearly emerged,” Warrier said. “It is important to understand what these features are and ensure that we are assessing autistic people across the lifespan.”

Most autism diagnoses are made before age 18, with 22% of diagnoses occurring by age 4, 20% from 5 to 8, 15% from 9 to 12 and 16% from 13 to 17.

Adult diagnoses are more common in women. Twenty-five percent of women with autism were diagnosed at age 19 or older last year, compared with 12% of men, according to Epic Research.

In the study, adolescents diagnosed with autism had more difficulties managing emotional issues and relationships with peers than other kids.

That was the struggle for Adeline Lacroix of Toronto.

Lacroix, now 42, who was raised in France, had trouble making friends as a child. She “wondered why in school we learned things that were to me quite easy, such as mathematics, but we didn’t learn how to make friends, which for me was much more difficult,” she said.

Lacroix often didn’t understand when other people were being ironic or making a joke. Although she got good grades, “I felt I was very dumb because I didn’t understand a lot of things.”

Her frustration led to depression and thoughts of death. “I didn’t really want to die, but at the same time I was so tired,” she said.

Her life changed when she was diagnosed with autism at age 30. Suddenly, she realized why understanding conversations was so hard. 

She changed careers, abandoning her old job as a schoolteacher to pursue a doctorate in psychology and neuroscience. Lacroix now has a supportive partner and a job she loves at the Center for Addiction and Mental Health in Toronto, where she researches women and girls with autism.

“I’m very happy with my life,” she said.

Although many young people with autism are still diagnosed relatively late in childhood because of a lack of screening and resources in their communities, increased awareness and wider access to testing have helped lower the age at which children are diagnosed with autism, allowing them to get critical early support.

Increased acceptance of neurodiversity is also motivating a growing number of teens and adults to seek out testing for autism, which can involve difficulties in communication and social interactions, as well as restricted or repetitive behaviors or interests. From 2011 to 2022, autism diagnoses among adults 26 to 34 grew by 450%, the largest relative increase among any age group.

In the Nature study, the first to link a genetic profile to the timing of autism diagnosis, newly diagnosed adolescents had an increased risk of depression.

The increase in depression could stem from both a genetic predisposition and a lack of support faced by young people whose unique learning needs and social challenges go unaddressed for years, Warrier said.

“Children who have undiagnosed autism may not receive the support they need,” he said. “They may be bullied, excluded and may be vulnerable socially. It is only when they are struggling that caregivers seek out professional help and they receive an autism diagnosis.”

In future research, he said, Warrier hopes to study how a person’s social environment — whether supportive or hostile — affects the risk of depression in later-diagnosed people. Although school and community services often focus on youngsters, Warrier said it’s important to support people with autism of all ages.

Continued

Read the study published in Nature here

Why it’s time to rethink the notion of an autism ‘spectrum’      

By Aimee Grant, The Conversation, October 2, 2025

The phrases “autism spectrum” or “on the spectrum” have become part of everyday language. They are often used as different ways of referring to someone who is “neurodivergent”.

The term was coined in the 1980s by psychiatrist Dr Lorna Wing, whose work transformed how autism was understood in the UK. At the time, her “autism spectrum” concept was groundbreaking. Instead of seeing autism as a rare, narrowly defined condition, she recognised a wide range of traits and experiences.

But the idea of a single spectrum, which stretches from “mild” to “severe”, may be misleading. And some autism experts, including me, argue the term has outlived its usefulness.

When most people hear the word “spectrum”, they may picture a straight line, like colours arranged from red to violet. Applied to autism, this suggests autistic people can be ranked from “more autistic” to “less autistic”. But that’s not how autism works.

Autism is made up of many different traits and needs, which show up in unique combinations. Some autistic people rely heavily on routine, while others find comfort in repetitive movements known as “stimming”. And some have an intense focus on particular topics, a concept researchers call “monotropism”.

There are also known links with physical conditions such as hypermobility. Because autism is made up of all these different elements, there can be no single line on which every autistic person is placed.

Attempts to draw boundaries still persist, however. The American Psychiatric Association’s diagnostic manual divides autism into three “levels” based on the amount of support a person is judged to need. They run from level 1 “requiring support”, to level 2 “requiring substantial support” and level 3 “requiring very substantial support”.

But there is research that argues these levels are vague and inconsistently applied. They don’t always reflect someone’s real-world experiences.

Life circumstances can also change a person’s needs. An autistic person who usually copes well may experience “burnout” and have an accompanying increase in support needs, if their needs have been unmet for a long time.

In a recent research article, my colleagues and I show that life stages such as menopause can increase support needs. A static “level” cannot capture this evolving nature.

More recently, the label “profound autism” has been suggested by the Lancet commission – an international group of experts – for autistic people with learning disabilities or high support needs. But other experts say the phrase is unhelpful because it tells us nothing about a person’s particular challenges or the type of support they require.

The legacy of Asperger’s

Dr Lorna Wing also introduced the term “Asperger’s syndrome” to the UK. Like the concept “profound autism”, using this term also divided autistic people into those with higher support needs and those with Asperger’s syndrome (lower support needs).

However, the label was drawn from the name of Austrian physician Hans Asperger, who in the 1940s identified a subgroup of children he called “autistic psychopaths”. During the Nazi period, Asperger was associated with a genocide of autistic people with higher support needs. For this reason, many autistic people don’t use the term any more, even if that is what they were originally diagnosed with.

Underlying all these debates is a deeper concern that dividing autistic people into categories, or arranging them on a spectrum, can slip into judgments about their value to society. In the most extreme form, such hierarchies risk dehumanising those with higher support needs. It’s something some autistic campaigners warn could fuel harmful political agendas.

Continued

FDA Commissioner Dr. Marty Makary tells Scripps News 'I don't think autism is genetic'

By Scripps News Group, via KTVQ News Montana, September 26, 2025

Dr. Marty Makary, commissioner of the Food and Drug Administration, said he does not believe autism is a genetic condition, calling it instead a “modern-day phenomenon.”

"I don't believe autism is genetic. When you see the severe autism that we see, at the high rate that we see today — the repeated motions, the ticks, the individuals who are completely nonverbal, you didn't see that a generation ago," he said in an interview with Scripps News. "You still don't see people in their 60s and 70s with those symptoms — the sort of repetitive motions, the completely non-verbal individuals."

"The number one thing was that we found for some kids, autism is an autoimmune disease, whereby their body is reacting to the folate receptor on the brain, blocking the brain from getting this critical vitamin," Makary said. "There's a treatment called leucovorin that some kids take and have a marked improvement in their autistic symptoms."

Makary explained that he and the FDA are now investigating a theory that recent rates of severe autism are not genetic.

"There's something going on. We think the autoimmune process in the child's body may be one of the causes of autism," he said. "Some doctors will take a kid with severe autism and test them for the antibodies to the folate receptor. Some will then go on, if they have the antibodies, to treat them with leucovorin, which the FDA is about to make available for those kids."

Medical experts and public health officials have cautioned against drawing causal links between over-the-counter medications and autism without substantial peer‑reviewed evidence.

Read the full article here

What you should know before buying folate and folinic acid supplements

By Sabrina Malhi, The Washington Post, October 1, 2025

Medical experts warn against treating over-the-counter supplements the same as leucovorin, the drug the Trump administration has touted as an autism treatment.

The Food and Drug Administration last week announced it would make it easier for parents to access leucovorin calcium to treat children with autism. Leucovorin is a form of vitamin B9 or folate, a nutrient essential for neurodevelopment.

Though its effectiveness for autism treatment has only been researched in small studies, the announcement appeared to send some rushing to buy over-the-counter supplements with the same key ingredient as the drug Trump administration officials touted. Some online shops appeared to sell out of folinic acid supplements.

But medical experts warn against treating supplements the same as leucovorin, which is a medication that has long been prescribed by doctors as an antidote to toxic effects of a certain cancer drug.

Folate is an umbrella term for the chemical compounds that can fulfill the vitamin B9 requirements that the body needs. The naturally occurring form is found in food such as leafy greens, beans and citrus fruits. It is essential for making DNA and new cells, which is why it is especially important during pregnancy and infancy when tissues are rapidly growing.

“Very few Americans are eating several servings of dark leafy greens and legumes a day which would help meet the folate requirements,” said Kevin C. Klatt, a research scientist and registered dietitian in the Department of Nutritional Sciences and Toxicology at the University of California at Berkeley.

As a result, some may turn to folic acid, which is a synthetic form of folate. It is used in supplements and fortified foods such as pasta and breakfast cereals.

Folinic acid is the drug known by its trade name leucovorin. 

Last week President Donald Trump cited leucovorin as a potential autism treatment.

Small and early research has indicated that people with autism have difficulty transporting folate — a nutrient essential for neurodevelopment — to the brain and think the medication may help deliver it more effectively. Researchers emphasize that larger studies are needed before the drug’s use in autism can be widely recommended.

Experts said that leucovorin has been mostly studied in children with cerebral folate deficiency, a rare condition caused by either genetic defects in the folate receptor or by folate receptor autoantibodies that block folate transport into the brain. Early studies found that some children with the condition also met criteria for autism, leading researchers to investigate whether these autoantibodies that block folate appear more frequently in certain children with autism.

“Very few people have cerebral folate deficiency, and folinic acid would not apply to the vast majority of people with autism spectrum disorder,” said Emily R. Smith, interim chair of the Department of Global Health and an associate professor at the George Washington University Milken Institute School of Public Health.

The FDA said it is working with GSK, the company behind Wellcovorin (leucovorin calcium), to update the label on its medication that would pave the way for more doctors to prescribe leucovorin for children with cerebral folate deficiency.

Medical experts said some families have sought out the drug in hopes it might be a treatment, but they warn the evidence does not support its broad use.

The Autism Science Foundation said in a statement that “more studies are necessary before a conclusion can be reached” and that it does not recommend leucovorin as a treatment for autism.

Most of the leucovorin studies involved only a few dozen participants each, and numerous compounds appear promising early on but fail when subjected to large-scale trials.

Several autism and disability organizations echoed similar caution.

Read the full article here

Republicans are making changes to Medicaid and SNAP. County officials say they’re not prepared to handle it.

By Jacob Wendler, Politico, September 27, 2025

Local officials charged with administering the country’s social safety net said changes in Republicans’ One Big Beautiful Bill Act will tax an already strained system, leading to an untenable workload for underresourced workers and potentially leading some eligible support recipients to fall through the cracks.

New work requirements attached to federal assistance programs in Republicans’ recently passed budget bill could contribute to more than 10 million people losing health care coverage and more than 2 million people losing access to Supplemental Nutrition Assistance Program benefits, according to estimates from the nonpartisan Congressional Budget Office.

But local officials from both Democrat- and Republican-leaning counties who are responsible for administering the programs in several states say they lack the staff, funding and resources to take on the administrative burdens of the changes. With more frequent enrollment renewals, complex eligibility requirements and changes to the cost-share between local and federal governments, underpaid and overworked officials worry the changes will overwhelm them.

“We’re already pushing a limit on the workload. We work as efficiently as we can, and we are really already up against the wall in providing services,” said Contra Costa County Supervisor John Gioia, whose county of over one million people sits just east of San Francisco. “All of this just intensifies the problem and increases workload while the burden for work goes up, so it makes it harder to properly serve the public who needs these services.”

In at least nine states, counties are responsible for administering Medicaid and SNAP, and the changes in President Donald Trump’s spending and tax bill could cost those counties as much as $850 million in increased administrative costs each year, according to an analysis from the National Association of Counties.

Mark Ritacco, chief government affairs officer for the National Association of Counties, said the blanket changes fail to take into account the nuanced differences between each state and county.

“I don’t think any county wants to give benefits to people who are not eligible for it,” Ritacco said. “But I think our biggest issue with the reconciliation bill is it very quickly shifts an enormous amount of cost to local governments for the first time and doesn’t really account for the fiscal environment in local governments, and certainly not in a way that is tailored to their particular state.”

In addition to vetting compliance with the new work requirements, local officials will now have to verify Medicaid eligibility twice per year as opposed to annually. States and counties will also be responsible for taking on 75 percent of the administrative costs for SNAP in the coming years — a substantial increase from their current cost share of 50 percent.

Gioia said the biannual eligibility check for Medicaid will mean doubling his staff’s monthly reenrollments from 170,000 per month to 340,000 per month, while funding cuts require the county to reduce personnel by nearly 100 eligibility workers.

Continued

States Already Cutting Medicaid, Massive Federal Cuts Yet to Come

By Julie Carter, Medicare Rights Center, October 2, 2025

The budget reconciliation bill, HR 1, contained drastic cuts to states’ Medicaid funding and coverage. While most of these cuts have not yet gone into effect, many states are already fearing economic downturns or recession spurred in part by rising costs and tariffs. In response, some of these states have already started cutting Medicaid spending, leading to access issues for people who get vital coverage from the program. 

In many areas, finding Medicaid providers can be difficult. Medicaid’s payment rates are lower than Medicare’s or other insurance and may drive some providers away from treating patients with Medicaid coverage.

This is the risk in North Carolina where the Medicaid program is cutting provider pay by a minimum of 3%, citing funding gaps. Similarly, Washington is cutting hundreds of millions from its Medicaid program, though state officials claim that the cuts will not reduce eligibility or coverage. 

States Cannot Weather Economic Downturns Without Cutting Programs 

Unlike the federal government, states are generally unable to weather economic downturns without cutting major programs. Medicaid is among the largest state expenditures. For example, in Nevada, Medicaid accounts for 25% of the state’s budget. And state spending on Medicaid has grown in the past few years. 

While all states maintain rainy day funds that can help mitigate revenue losses in the short term, they are not enough to cover big, long-term gaps in funding.

Bigger Cuts on the Horizon 

Not every state is cutting Medicaid yet, but they eventually will. Most of the provisions in the 2025 budget reconciliation bill—HR 1—have yet to go into effect and these cuts will have a devastating impact on state budgets. KFF analysis shows that HR 1 will cut federal Medicaid spending by $1 trillion over ten years. States might be able to pick up some of those costs, but not all.

The effects will not be even across states. Another KFF analysis shows that expansion states with large numbers of rural residents will be hit the hardest. Medicaid covers 1 in 4 adults in rural areas, a higher share than in urban areas, and plays a large part in financing rural health care services. 

States facing huge Medicaid shortfalls may be forced to cut optional Medicaid services or eligibility. Of particular concern are the Home- and Community-Based Services (HCBS) that allow people to age in place safely. These benefits have been targeted in the past when state budget pressures arose.

Administrative Costs Will Also Rise 

Because HR 1 puts new administrative barriers like work reporting requirements in place, state costs will also rise. States will be paying millions of dollars to establish new processes for potential Medicaid enrollees to report their work or exemptions. These processes are extremely expensive to create and maintain; for example, Georgia’s recent implementation of such a requirement has spent twice as much on administration—$54 million—as on providing actual Medicaid coverage according to the watchdog Government Accountability Office (GAO). 

It Is Not Too Late to Change Course 

Amidst the serious economic news, rising health care costs, and looming Medicaid cuts, we urge policymakers to shore up Medicaid programs nationwide, reverse the devastating cuts HR 1 has set in motion, and encourage rather than discourage providers to participate in the program. 

Read the full article here

Rolling Back the Big Beautiful Bill’s Health Care Provisions Would Not Provide Health Care to Undocumented Immigrants

By Drishti Pillai, KFF, October 2, 2025

Undocumented immigrants are not eligible for federally-funded health coverage. The GOP’s Big Beautiful Bill didn’t change that. Overturning the health care provisions in the law won’t either. In the midst of the ongoing government shutdown, Republican policymakers claim that H.R.1, or the “Big Beautiful Bill”, will restrict health coverage for undocumented immigrants, and that a proposal from Democrats to reverse the cuts would expand coverage for those undocumented immigrants. However, provisions related to limiting immigrant eligibility for Medicaid, the Children’s Health Insurance Program (CHIP), Medicare, and subsidized Affordable Care Act (ACA) Marketplace coverage only impact lawfully present immigrants, as undocumented immigrants already are ineligible for federally-funded coverage in these programs under longstanding federal policy.

Continued

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

Arizona's disability services program faces new $159M budget shortfall 

By Manuelita Beck, ABC-15 News, September 25, 2025

Arizona’s disabilities services program is staring down a new $159 million shortfall – just five months after a bitter battle in the Legislature over an earlier budget hole.

The Division of Developmental Disabilities will ask lawmakers for a “supplemental” funding request of an estimated $56.3 million from the state’s general fund and $103.1 million in federal dollars, the Department of Economic Security exclusively told ABC15.

“We're going to need some additional funding to make sure that we don't have to reduce services or benefits for any individual who is in the Developmental Disabilities program,” DES Director Michael Wisehart said.

DDD almost ran out of money last spring, endangering services for the final two months of the budget year. The law passed to cover the budget hole included reforms that led to major service cuts for children with disabilities starting Oct. 1.

Those cuts, which advocates say will be “catastrophic” for families, are projected to save the department about $133.2 million – but not enough to cover this anticipated shortfall.

“This is on top of the expected savings associated with the clinical decision to reduce services for individuals under the age of 18 for specific, targeted services,” Wisehart said.

Continued

Follow- up:

Stricter disability need assessments begin in Arizona, sparking concern

By Jacob Owens, KVOA News, October 1, 2025

Significant changes to Arizona's policy on developmental disabilities are now in effect, which will impact thousands of children across the state. Arizona is changing its testing for determining some caregiving needs, in response to funding cuts.

The state is changing how it tests how much help a family needs with its child for daily tasks, known as attendant care and for specific skills, known as habilitation. These assessments play a crucial role in determining the level of state-supported caregiving families receive.

The changes are expected to mainly affect assessments involving those with developmental disabilities who are as old as 17. 

Marianne Scott, a board member of the caregiver-led, Raising Voices Coalition, shared her experience. Her daughter, Maycee, who is 24 and has cerebral palsy, required substantial support throughout her childhood.

"Having a caregiver being able to come and care for Maycee, it allowed for me to be a parent to my other children," Scott said.

The revised caregiving assessments now include age caps. For instance, children under 8 years-old will no longer be evaluated on their ability to bathe themselves, cutting off that form of support for families who previously relied on caregivers helping to bathe their children who are under 8 years-old.

Continued

Futher Follow-up:

Changes to Arizona child disability assessments kick in

By Lillian Donahue and Manuelita Beck, ABC-15 News, October 2, 2025

Arizona families caring for children with disabilities say they will receive less state funding for important services as assessment changes kicked in on Wednesday.

The Division of Developmental Disabilities (DDD) and the Arizona Health Care Cost Containment System (AHCCCS) revamped its policies on attendant care and habilitation services for those younger than 18, changes required by the funding legislation that saved the program from running out of money last spring.

The state will no longer assess the needs of children younger than 10 with disabilities for attendant care, which pays for care workers who help provide safe and healthy living conditions. There are also new, age-based limits on habilitation, or therapies that help those with disabilities gain needed life skills.

That means families now must cover those costs – and parents who were paid for those services as part of a state program will no longer receive that compensation.

Holly Brittain is a certified caregiver for her daughter, who needs around-the-clock care. She said the changes will slash the funds she needs to support and teach her daughter.

“In my opinion, it’s discriminatory,” Brittain said. "They should be doing it by need, not by age. One child like mine, I have to tell my daughter, who’s almost 7, I have to show her hand-over-hand how to wash her hands. Most 7-year-old little kids, you could just tell them to wash their hands.”

Brittain said whether a parent serves the support role for a disabled child, or a third-party caregiver, she’s worried the changes will drive away talented caregivers and further financially strain families.

“It’s devastating,” Brittain said. "All parents are going to drown because of this, and especially the kids.”

Continued

Ohio - Anne Grady Services relaunches respite care program paused during pandemic   

By Eric Taunton, The Blade, October 1, 2025

During the pandemic, health-care facilities across the country had to pivot in how they cared for patients.

Anne Grady Services, an organization that provides care for people with disabilities, was forced to pause programs, including one for respite care — Noah’s House, said Julia Hage, director of mission advancement.

Noah’s House provided caregivers of loved ones with disabilities a break while they handled tasks like going to doctor appointments or work. 

“The priority is the individuals who have full-time residence here as the COVID pandemic put a stop to outside partners coming in,” she said. “We had to put a pause on the rest of the services, as that was an additional service to our full spectrum of care.”

After a few years, the health-care facility is gearing up to reopen Noah’s House on weekends starting Friday. The respite care facility, which is connected to the Anne Grady Services’ main facility near Holland, will be open Fridays through Mondays.

The plan, Ms. Hage said, is to be able provide respite care every day, but Anne Grady Services will slowly work itself up back to that schedule.

“In the field of developmental disabilities, there are a lot of individuals who live with family members or guardians out in the community,” Ms. Hage said. “Family members and guardians that look over individuals with intellectual disabilities have a space where we can provide additional care and support so that the family can go take care of other things in their life as they need.”

Shelby Mallory, development manager for Anne Grady Services, said she’s seen firsthand how respite care can not only provide relief for families but also helps clients if they’re moving into a care facility.

“Individuals who are moving into supported living or into intermediate care facilities, that transition from being with our guardians or caregivers can be difficult,” she said. “Utilizing respite care facilities sometimes makes that transition easier for them in the long run.”

Read the article here

Tennessee won’t track how many students with disabilities benefit from new voucher program

By Melissa Brown, Chalkbeat, Tennessee, October 2, 2025

Tennessee isn’t tracking how many students with disabilities enroll in its new statewide education voucher program, the latest concern for education advocates who say the program needs to be more transparent.

The Tennessee Department of Education said disability documentation is not required in the law establishing the Education Freedom Scholarship program earlier this year.

The department also isn’t tracking how many first-year vouchers went to students already enrolled in private schools. Some advocates and lawmakers argue robust data is needed to determine who is benefiting from the program.

Equitable access for students with disabilities has long been a major point of debate in the Tennessee voucher conversation, particularly around private schools’ right to refuse enrollment of students with disabilities. A Republican majority in the Tennessee House this January voted down a proposed amendment to the voucher program that provided some protections for students with disabilities in private school enrollment.

Jeff Strand, a former special education teacher and assistant director of government relations at EdTrust-Tennessee, said school choice has been billed by some state leaders as a “silver bullet” for families dissatisfied with their local public schools, but the lack of reporting requirements makes that hard to verify.

“It makes comparison or even evaluation of the success of this program impossible,” Strand said. “That has a double impact for marginalized student populations like students with disabilities.”

National data gathered before Tennessee launched its voucher program showed students with disabilities, along with low-income families and students of color, are frequently left out of school programs because they have fewer options to choose from, among other issues. Private schools with specific special education programs may also charge higher tuition prices.

Students with disabilities who move to a private school also waive certain civil rights, such as the right to a free appropriate public education guaranteed under the Individuals with Disabilities Education Act.

“I’d go so far as to say it’s not going to equally serve students with disabilities,” Strand said of Tennessee’s new program. “But we’re not going to be able to know. There’s nothing for us to learn from this. It’s a blank check to cherry pick and handpick your student population as evidenced you’re doing a good job. But you can say, ‘We’re not going to take the toughest kids.’ You can take the kids you’re going to serve with minimal resources.” 

Continued

West Virginia must act now and implement IDD increases (Opinion)

By Brad Story, The Herald-Star, September 27, 2025

West Virginians with intellectual and developmental disabilities deserve the opportunity to live, learn, work, and thrive in their communities. The services that make this possible — provided by dedicated professionals across our state — are at risk.

Unless the state implements rate increases for IDD services on Oct. 1, more providers will be forced to close their doors, and families will lose the critical support they depend on every day.

This is not a new issue. A 2023 rate study recommended a 31 percent increase to IDD home and community-based service rates.

Providers received half of that — a 15 percent increase — and while it was the first meaningful adjustment in years, providers were vocal at the time that it would not be enough to stabilize the system. We warned that without a further rate increase; many would be unable to continue operations.

Sadly, that prediction has proven true. In the last year alone, multiple providers have closed their doors, leaving fewer options for families and worsening an already critical shortage.

West Virginians may ask, how will the state pay for this rate increase and will it cost us taxpayers more money? The answer is no, it will not increase taxes, and the money already exists from an underspend within the state’s IDD Waiver line item.

A follow-up study completed this summer by Myers & Stauffer confirmed what families and providers have been saying all along: wage and rate levels are inadequate. That study recommended another 6 percent increase, citing provider closures and lower wages compared to surrounding states.

Without the implementation of an Oct. 1 increase, even more providers are expected to close, leaving individuals with IDD without consistent, trusted support. 

At the center of this crisis are the direct support professionals who deliver hands-on care every day. These highly skilled workers can often earn more at a fast-food restaurant than in their demanding roles supporting individuals with complex needs.

That imbalance is driving turnover and staffing shortages, which directly impacts quality of care. Raising rates means raising wages — and that means stability for families who depend on it. Other states have recognized this reality and invested accordingly. West Virginia must do the same.

What is needed now is follow-through: An Oct. 1 increase must be implemented. 

Read the full editorial here

NOTE: At this writing, West Virginia has not opted to post any rate increases for I/DD Services

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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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