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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.
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VOR's September Networking Meeting
Monday, September 29, 2025
4 pm ET / 3 pm CT / 2 pm MT / 1 pm PT
On Zoom
Come join us for a lively discussion of matters that affect
your family and your family members with
I/DD and autism.
Preparing for the Medicaid cuts
in the
One Big Beautiful Bill Act
- How will the cuts affect people in ICFs?
- How will the cuts affect people in HCBS group homes?
- How will the cuts affect family caregivers & at-home services?
- What will happen to our hospital systems?
- What are provider taxes?
- What does it really mean when Congress says it won't cut provider taxes for ICF's?
We welcome your input on the issues that will affect your family
You must be a member of VOR to attend this meeting.
Please Click Here To Register
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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
| | Several VOR Members have asked, "Isn't there one article that covers the whole Medicaid Cuts thing?" Well, it's a pretty complex topic, and every state will respond in it's own way, but the following article covers a lot of the essentials. Highly recommended. | |
How will the One Big Beautiful Bill Act impact Medicaid?
By The USAFacts Team, USA Facts, September 24, 2025
The One Big Beautiful Bill Act (OBBBA), which was signed into law on July 4, 2025, contains over 30 different provisions related to Medicaid — one of the nation’s largest assistance programs. The legislation is poised to change who may be eligible, how people enroll, and how states fund their programs.
Medicaid provides free or low-cost medical insurance to millions of low-income individuals. About 89 million people, or 26% of the population, were covered at some point in fiscal year (FY) 2024.
Medicaid is jointly funded by states and the federal government, with federal dollars funding 50% or more of each state’s program. Ten states — California, Colorado, Connecticut, Maryland, Massachusetts, New Hampshire, New Jersey, New York, Washington, and Wyoming — split their Medicaid costs 50/50 with the federal government. Mississippi had the highest federal share of federal Medicaid funding at 76.9%.
Read the article here
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States Are Cutting Medicaid Provider Payments Long Before Trump Cuts Hit
By Bram Sable-Smith and Sarah Jane Tribble, KFF Health News, September 22, 2025
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Every day for nearly 18 years, Alessandra Fabrello has been a medical caregiver for her son, on top of being his mom.
It is almost impossible to explain what it takes to keep a child alive who should be dead,” said Fabrello, whose son, Ysadore Maklakoff, experienced a rare brain condition called acute necrotizing encephalopathy at 9 months old.
Through North Carolina’s Medicaid program, Maklakoff qualifies for a large slate of medical care in the family’s home in Chapel Hill. Fabrello said she works with staffing agencies to arrange services. She also learned to give the care ordinarily performed by a doctor, skilled nurse, or highly trained therapist because she often can’t get help.
Now, broad cuts to North Carolina Medicaid will make finding and paying for care even more difficult.
Nationwide, states are scrambling to close budget shortfalls and are eyeing Medicaid, generally one of a state’s biggest costs — even before President Donald Trump’s hulking tax-and-spending law decreases federal spending on Medicaid by about $1 trillion over the next decade.
North Carolina and Idaho have already announced plans to cut Medicaid payments to health care providers, including hospitals, doctors, and caregivers.
In Michigan and Pennsylvania — where lawmakers have yet to pass budgets this year — spending on Medicaid is part of those debates. In Washington state, lawmakers approved cuts to the program that will not affect who is eligible, said Hayden Mackley, a spokesperson for the state’s Office of Financial Management.
North Carolina’s Medicaid agency announced it will institute on Oct. 1 a minimum 3% reduction in pay for all providers who treat Medicaid patients. Primary care doctors face an 8% cut and specialty doctors a 10% drop in payments, according to the North Carolina Department of Health and Human Services.
Fabrello said her son’s dentist already called to say the office will not accept Medicaid patients come November. Fabrello fears dental work will become another service her son qualifies for but can’t get because there aren’t enough providers who accept Medicaid coverage.
Occupational and speech therapy, nursing care, and respite care are all difficult or impossible to get, she said. In a good week, her son will get 50 hours of skilled nursing care out of the 112 hours he qualifies for.
“When you say, ‘We’re just cutting provider rates,’ you’re actually cutting access for him for all his needs,” Fabrello said.
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5 Key Facts About Medicaid Coverage for People With Intellectual and Developmental Disabilities (I/DD)
By Priya Chidambaram, Alice Burns, and Abby Wolk, KFF, September 22, 2025
President Trump signed into law a budget reconciliation package 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 and increase the number of uninsured people by 10 million, with three quarters of the change stemming from cuts to Medicaid. These reductions could have implications for people with intellectual and developmental disabilities (I/DD) as people with I/DD disproportionately rely on Medicaid.
I/DD include various disabilities such as intellectual disabilities, autism, developmental delays, and learning disabilities. These disabilities are usually present at birth or manifest during childhood and affect the trajectory of the individual’s physical, intellectual, and/or emotional development. Loss of Medicaid coverage or benefits poses unique challenges for people with I/DD, many of whom live on fixed incomes, face barriers to employment and accessing private health coverage, and have high health care needs and spending. People with I/DD are distinct from many other populations who need long-term care as they rely on a broad range of services and supports across the lifespan, while most others who use long-term care often develop care needs later in life. These needs can include assistance with activities of daily living (such as bathing and dressing) and instrumental activities of daily living (such as shopping or cooking), employment-related services, positive behavior supports, and supervision when completing tasks.
According to estimates by the National Council on Disability (NCD), there are at least eight million people in the U.S that have I/DD, though that is likely an underestimate. Other estimates of total number of people in the U.S with I/DD range widely, from eight million to sixteen million people. It is difficult to estimate the exact number because there is no current survey that asks a nationally representative population whether they have an I/DD. The estimated prevalence of I/DD is higher among children than among adults in the U.S., with the NCD noting that about 4% of U.S. children and 2% of U.S. adults have an I/DD (though these rates are much lower than the rate of I/DD in the National Health Interview Survey, which are closer to 14% among U.S. children).
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Key Takeaways from CMS’s Rural Health Funding Announcement
By Zachary Levinson, Scott Hulver, and Tricia Neuman, KFF, September 23, 2025
On September 15, 2025, the Centers for Medicare and Medicaid Services (CMS) released a Notice of Funding Opportunity (NOFO) for the $50 billion Rural Health Transformation Program (referred to here as the “rural health fund”). The Notice describes what states need to do to apply for funds, the deadline for state applications, and the criteria that CMS will use to determine how funds will be allocated. The rural health fund was established by the tax and spending reconciliation law of 2025. It was created to help offset the impact on rural areas of the law—which includes an estimated $911 billion in federal Medicaid spending reductions over the next ten years, including an estimated $137 billion in rural areas based on KFF estimates—particularly given ongoing concerns about the financial vulnerability of many rural hospitals and reports of hospital closures. Distribution of the funds will begin before many of the Medicaid cuts under the reconciliation law take effect.
To receive any funds, states must submit complete applications that align with program requirements by November 5, 2025. CMS will decide which applications to approve by December 31, 2025. Half of the fund, $25 billion, will be allocated equally among states with approved applications, without regard to the state’s rural population or the needs of rural hospitals and other providers in the state. The other half, $25 billion, will be distributed among approved states based on a variety of factors specified in law and in the NOFO, such as the number of rural residents and health facilities, the relative amount of uncompensated care in the state, the quality of workforce and other state initiatives supported by the rural health fund, and the extent to which states adopt Make America Healthy Again (MAHA) policies.
Although the Notice provides additional information, there are several outstanding questions, such as whether all states will receive funds, what share of the $50 billion will go to the about 1,800 hospitals in rural areas versus other providers and various state initiatives, and the extent to which the direct and indirect benefits for rural hospitals will offset their losses under the reconciliation law. The NOFO details the factors affecting how funds will be allocated across approved states, but CMS will continue to influence the distribution through ongoing evaluation of state initiatives and policy changes and decisions over whether to reduce, withhold, or recover funds from states for noncompliance and other reasons.
Read the full article here
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Rural health clinics are closing after Trump’s ‘One Big Beautiful Bill,’ raising the legislation’s political risks
By David Wright and Eva McKend, CNN, September 22, 2025
Exactly two months after President Donald Trump signed his policy megabill in a July 4 celebration at the White House, a Virginia health care company blamed the law for the closure of three rural clinics serving communities along the Blue Ridge Mountains.
The closures, Augusta Medical Group said in its statement, were part of the company’s “ongoing response to the One Big Beautiful Bill Act and the resulting realities for healthcare delivery.”
Rural health providers that rely on Medicaid funding were already under strain before the bill cut federal health spending by hundreds of billions of dollars over the next decade. Now, Democrats are linking that crisis to Trump and Republicans in elections this year and next.
Democratic gubernatorial nominee Abigail Spanberger recently campaigned in Buena Vista, a 6,600-person town that is losing its clinic, as she tries to improve her party’s standing with rural voters ahead of this fall’s election. Candidates for governor, potentially faced with the job of navigating the cuts, have been among the most vocal about the threats to rural health care, including Keisha Lance Bottoms in Georgia, Rob Sand in Iowa, Gov. Kathy Hochul of New York and former Biden administration Interior Secretary Deb Haaland in New Mexico.
“Rural hospitals are closing, at the end of the day. We’re seeing the tip of the iceberg here in Virginia, and it’s a sign of what’s to come,” said Marshall Cohen, a veteran Democratic strategist at the political firm KMM Strategies. "
Ken Nunnenkamp, executive director of the Virginia GOP, pushed back on criticism of the Augusta Health closures in a statement to CNN. Augusta Health, which declined to comment beyond its statement, noted in its announcement that patients at two of the clinics could be reassigned to other facilities less than 10 miles away and that it would use a mobile clinic to serve people affected by the third closure.
“If two health clinics consolidate in order to provide better, more consistent, and more accessible service to the patients from both locations, that is a win for rural communities,” Nunnenkamp said in a statement.
How the ‘One Big Beautiful Bill’ affects rural health care
Under the legislation, Medicaid spending is set to fall by more than $900 billion over the next 10 years, according to projections from the nonpartisan Congressional Budget Office. About 7.5 million more people would be uninsured in 2034 due to the policy changes, with 5.3 million of them being affected by the addition of work requirements for many low-income adult enrollees, according to the CBO’s most recent analysis.
The work requirements are likely to affect rural communities more, said Tim Layton, an associate professor of public policy and economics at the University of Virginia, because it’s harder for residents in those communities to find employment.
“You can expect those places to be impacted by now having people who don’t even have Medicaid,” Layton said. “With fewer people to spread fixed costs across, it becomes harder and harder to stay open.”
Rural health care providers disproportionately rely on Medicaid enrollees. They were already struggling with limited patient pools and long-term population loss.
Researchers at the University of North Carolina, cited in a letter by Democratic senators opposing the GOP legislation, identified 338 rural health facilities nationwide endangered by the policy changes, including six total in Virginia.
Candice Crow, a mother of four children who have autism, heavily relies on the Bon Secours - Southampton Medical Center in Franklin, Virginia, one of the facilities on the researchers’ list. She’s been raising concerns with local media and spoke to CNN.
“The staff there are so kind and caring. They do go above and beyond. They’re very accommodating for the special needs children and all their little medical complexities that they have,” Crow said. “Every minute counts when it comes to emergencies. This could cost someone their life, so you’re taking away their lifeline.”
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| | In the Event of A Government Shutdown | |
When Government Shuts Down: The Effect on Medicaid
As shutdown looms (again), here’s a quick reminder of what it would mean for Medicaid.
By Nick Bath, The 80 Million, September 25, 2025
- Congress has until 11:59pm on Tuesday, September 30 to avert a shutdown;
- In general, federal workers that support mandatory programs like Medicaid are protected from furlough;
- However, Medicaid’s unique status as an advanced appropriation means funding runs out in the first quarter of next year, should the shutdown last that long.
Shutdown is likely
Before it adjourned last week for a scheduled district work period, the House passed a bare-bones seven-week continuing resolution (CR) on largely partisan lines (one Democrat supported the measure) – this bill would have extended discretionary government funding at current levels. The Senate voted on, and failed to pass, both the House-passed CR and a Democratic alternative authored by Appropriations Committee ranking members Rep. Rosa DeLauro (D-CT) and Sen. Patty Murray (D-WA). As a result, Congress will have roughly 48 hours when it returns next week to avoid a lapse in Executive Branch authority to spend appropriated funds – commonly known as a shutdown. While the Senate is scheduled to return on Monday, the Speaker has not called the House back in session before the shutdown date, widely seen as a tactic to put maximum pressure on the Senate to pass the House measure.
All shutdowns are partial
In general, the immediate effect of a shutdown is that all Executive Branch activities funded by appropriations (also known as discretionary programs) can no longer legally operate and the employees supporting them are furloughed without pay. However, the law does make exception for employees deemed “essential,” the definition of which is sufficiently vague to give the Administration broad latitude in retaining certain categories of employees. Federal agencies have not updated their staffing contingency plans in the event of a shutdown since President Trump took office. There are some concerns that, given this Administration’s focus on shrinking the size of the federal workforce, a narrower definition of “essential” may be employed this time around, resulting in more employees being furloughed.
Other programs, and the employees supporting them, are exempt from furlough because their funds are not authorized by appropriations bills but rather are mandatory spending. This category includes federal entitlements like Medicare and Medicaid. Thus, employees at the Center for Medicaid and CHIP Services (CMCS) working on Medicaid are generally exempt from furlough.
Medicaid is an exception within the exemptions
However, at least theoretically, Medicaid is more vulnerable to a lapse in appropriations than other entitlement programs. This vulnerability arises from its unique hybrid status as an “appropriated entitlement,” an historical artifact in which spending occurs automatically (dictated by existing statutory eligibility and reimbursement formulas) but Congress appropriates those funds based on spending projections.
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‘I’m failing as a parent’: Massachusetts mother creates website to help expedite pediatric therapy services
By Kelly Sullivan, Boston 25 News, September 21, 2025
One in six children have a developmental disability--that’s according to the American Academy of Pediatrics. And hundreds of families in the Boston area are currently waiting months for speech and physical therapy services.
A Massachusetts mother who experienced that wait firsthand decided to address the issue by starting up a pediatric therapy service that jumps all the hurdles families face.
At just five months old, Cara Soccorso discovered her son had developmental delays and needed to find a physical therapist.
“We had started kind of the process of reaching out to different agencies and encountering just like a lot of barriers in terms of being able to be seen right away,” said Cara Soccorso of Sudbury.
Cara found several places—but they all had wait lists. And as time ticked away-she felt like every minute mattered.
“I think like for any parent who has any kind of a worry, the waiting is hard,” said Soccorso. “So to be told that we would have to wait weeks or months for appointments is really discouraging.”
Jennifer Wirt experienced the same thing with her daughter—waiting nearly a year to find a therapist.
“And really the whole time you just like watch your child fall behind and you think like, I’m failing as a parent,” said Jennifer Wirt, the Founder and CEO of Coral Care. “Like I had one job and I’m not doing it.”
That early parenting trauma stuck with Jennifer—so much that she decided to fix the problem so many other parents were facing. She created Coral Care—a website where you search for a pediatric therapist specific to your child’s needs.
“We handle all benefits, checking insurance coverage, and so that provider is going to come to your house, do an evaluation, come up with a personalized care plan,” said Wirt.
The wait time--no longer than two weeks from when a match is made online to the provider coming to your door for weekly sessions.
“Our family is very busy, and so it really takes out the scheduling gymnastics of trying to figure out who’s going to pick him up, who’s going to bring him, what’s the time going to look like,” said Soccorso.
“Getting a person to work with your child in a consistent ongoing way should not be adding to the stress of it all; it should be a relief,” said Wirt.
Another relief for parents is that Coral Care accepts most major health insurance plans in Massachusetts.
“It’s really life-changing for a lot of families who feel like they have to figure out what’s going to be the best for their child and how they can get them the right level of support,” said Soccorso.
Jennifer says if parents try to go through state programs, wait are averaging 12 months.
“We know there’s so many more families still waiting,” said Wirt. “We also know there are so many more clinicians who are looking to work more and do what they love. And so our goal is continue going in Massachusetts, but take what we’ve built and launch it in as many markets across the country as possible.”
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Marylanders with developmental disabilities sue health department over Medicaid terminations
By Christian Oaniran, CBS News, September 26, 2025
A group of Maryland residents are alleging that Maryland's Medicaid system is unfairly cutting off care to people with disabilities.
In a class action lawsuit filed in Montgomery County Circuit Court on Sept. 24, Maryland residents and The Arc Montgomery County say the Maryland Department of Health's (MDH) Medicaid eligibility process has wrongly cut hundreds of people with intellectual and developmental disabilities off from critical services.
The complaint names the MDH, its secretary Meena Seshamani, and the State of Maryland as defendants
A spokesperson for the MDH told WJZ that the department does not comment on litigation.
What does the lawsuit allege?
The lawsuit alleges Maryland's Medicaid system unlawfully cut thousands of people with disabilities off from life-sustaining services by violating due process and federal Medicaid law.
The plaintiffs allege the system is "dysfunctional" and say at least 30 people supported by The Arc Montgomery County, including the named plaintiffs, have already been disenrolled.
In the filing, the plaintiffs accuse the MDH of arbitrarily disenrolling hundreds of people with intellectual and developmental disabilities since the end of the COVID-19 pandemic in May 2023.
"MDH sent hundreds of notices to people with IDD supported by The Arc Montgomery County to a mailing address that The Arc had not used in more than five years," the plaintiffs wrote. "As a result, participants in the waiver programs were left completely uninformed about important redetermination deadlines and decisions regarding their eligibility for Medicaid."
The filing also alleges the MDH issued "hundreds of notices" informing people with intellectual disabilities that they were being disenrolled from Medicaid based on state regulations that do not exist.
Plaintiffs experiences detailed
The lawsuit details the experiences of four individuals who the plaintiffs allege wrongly lost their Medicaid services.
- One plaintiff, Ursula Battle, who has cerebral palsy and needs full-time care, lost her Medicaid services after the state sent her both an approval letter and a termination notice on the same day, claiming her assets were too high, the suit alleges.
- Constance Farrell, who has mild intellectual disability, early-onset dementia and seizures, was cut off from Medicaid after the Maryland Department of Health claimed it never received her renewal paperwork and issued a closure notice., according to the complaint.
- Frank Lee, another plaintiff, who has a mild intellectual disability and epilepsy, was wrongly terminated from Medicaid after the MDH claimed he failed to provide required information, the complaint alleges.
- A fourth individual, Yolanda Puzzo, who has moderate intellectual disability and multiple chronic health conditions, was allegedly disenrolled from Medicaid after the Maryland Department of Health sent notices to the wrong address and issued a closure notice.
The lawsuit also claims that in the termination notices for Lee, Puzzo, and Farrell the MDH cited a Medicaid procedural code that they allege does not exist.
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Kansas - State leaders consider additional medicaid waiver in effort to reduce IDD waitlist
By Callie Holthaus, WIBW News, September 24, 2025
State leaders told lawmakers today that, if nothing changes, some of the more than 8,000 Kansans on the wait list for an intellectual and developmental disabilities waiver could have to wait up to eight years for help accessing round-the-clock services.
Earlier this year, lawmakers got on board with considering a new type of waiver that officials hope will reduce the number of people waiting and shorten the time it takes to get help.
The community support waiver (CSW) differs from an IDD waiver in that it’s designed for people who don’t quite need round-the-clock care.
In a meeting Wednesday, KDADS officials said the state opened up more IDD slots earlier this year but it didn’t do much to help the situation.
They believe the CSW would free up some of those IDD slots and thus reduce the waiting time for a waiver.
However, the state would have to follow federal rules to get the CSW up and running. Navigating federal compliance is a complex process and presents yet another challenge in terms of the resources it could require.
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Colorado - One-third of Gov. Jared Polis’ budget cuts involve Medicaid
By Meg Winegerter, The Denver Post, September 20, 2025
Almost one-third of the budget cuts and sweeps of unused money that Gov. Jared Polis used to close a $249 million budget hole will come from Medicaid, and providers are trying to figure out how much disruption that will cause for them and their patients.
H.R. 1, known as the “Big Beautiful Bill,” blew a roughly $783 million hole in the state budget in July, because Colorado’s tax laws automatically adjust to stay in harmony with the federal government’s. The legislature opted to undo some of those changes during a special session in August and gave Polis the authority to fill the rest of the gap.
About $79.2 million of the $252 million in cuts came from the Colorado Department of Health Care Policy and Financing, which runs Medicaid in the state. The list includes a mix of reductions in the rates paid to people who provide care, unused funds swept from specific programs and plans to review some care types more strictly before paying.
The largest cut, worth roughly $38.3 million, would roll back most of a 1.6% increase that most providers expected to get this year. Since providers received slightly higher rates in the first months of the fiscal year, it will work out to about a 0.4% increase, which is in line with recent years, the department said.
Denver Health estimated the rollback would cost the city’s safety-net hospital about $5 million. The health system isn’t planning any layoffs or service reductions, but could cut back on nonessential maintenance and technology updates, CEO Donna Lynne said. As it was, the increase only partially offset growth in costs in recent years, she said.
“We were already trying to absorb the difference between medical inflation and the 1.6%,” she said. The American Hospital Association estimated hospital costs rose about 5.1% in 2024.s take action, so consider inserting phrases like "for a limited time only" or "only 7 remaining!"
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Arizona disability policy changes impact Tucson families
By Kayla Butter, KOLD-13 News, September 23, 2025
Families with children with disabilities might see restrictions to their state services starting next month.
The Arizona Department of Economic Security’s Division of Developmental Disabilities is making changes to its policies on attendant care and rehabilitation services for those younger than 18.
Under the changes to DDD’s assessment tool, the state will no longer assess the needs of children with disabilities under the age of ten, which means families of these children will no longer receive payment for attendant care.
Two-year-old Lennon Novinski was diagnosed with Batten disease, a terminal neurological disorder, just about a year ago.
“After her diagnosis it was six months of rapid regression,” said Hannah Novinski, Lennon’s mom. “So, she lost the ability to walk and crawl and talk and eat by mouth.”
Shortly after Lennon’s diagnosis, her now 16-month old sister, Elliott, was diagnosed with the same disease.
“Probably in about six months she’ll be at the same point as Lennon,” said Novinski.
Because Lennon, and soon Elliott, require around the clock, specialized care, Novinski said her family relies on attendant care payments from the state.
“Having this as another resource just to kind of buffer what we were making made it possible for me to stay home and be with Lennon, but now with the new cuts, we are forced to be living on one income,” said Novinski, who said her family now has to live off of her husband’s teacher salary.
In a joint statement to 13 News, AHCCCS and DDD said:
“The upcoming revisions are designed to ensure services are delivered in a clinically appropriate, equitable and cost-effective manner. They are also intended to meet federal requirements and comply with Arizona law.”
AHCCCS and DDD also said they’ve seen a significant increase in the use of attendant care among minors in the state.
According to numbers by the Department of Economic Security, within the past year, there was a more than $140 million increase in money spent by the state on attendant care for those under 18.
Still, Novinski said that the way DDD went about the change is not right, especially considering she was made aware of the changes - which will take effect on October 1st - last week.
“Cuts are real and they affect families in real ways and to cut from the most vulnerable of our population just doesn’t seem fair,” said Novinski.
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| | Autism and Tylenol - Really? | |
As Trump Makes Unproven Autism Claims, Advocates Raise Alarms
By Michelle Diament, Disability Scoop, September 23, 2025
The Trump administration is adding a warning to Tylenol over concerns that it could lead to autism and approving another drug to treat the developmental disorder, even while acknowledging that studies on both are inconclusive.
The Food and Drug Administration plans to update labeling for acetaminophen, sold under the brand name Tylenol, to warn of what the agency is calling a “possible association” with autism when the medication is taken during pregnancy. The FDA is sending a letter alerting physicians and the U.S. Department of Health and Human Services is launching a public service campaign about the concerns.
At the same time, the agency is moving to approve the drug leucovorin, also known as folinic acid, as a “potential treatment for speech-related deficits” associated with autism. Once the label update is made, officials said that state Medicaid programs will be able to cover the drug, which is mainly used to prevent harmful effects from chemotherapy, as an autism treatment.
As they move to make the medication more available, federal health officials said that the National Institutes of Health plans to conduct “confirmatory trials and new research into the impact of leucovorin including safety studies.”
The news came Monday during a wide-ranging White House event where President Donald Trump spoke at length about his ideas about what’s causing rising autism rates, saying in many cases that he was speaking for himself even as he gave specific and direct instructions to Americans.
“Don’t take Tylenol,” Trump said to expectant mothers. “There’s no downside. Don’t take it. You’ll be uncomfortable. It won’t be as easy maybe, but don’t take it. If you’re pregnant, don’t take Tylenol and don’t give it to the baby after the baby is born.”
Trump also advised parents to space out the vaccines given to their children citing “common sense.”
The event Monday follows through on repeated pledges from Trump and Secretary of Health and Human Services Robert F. Kennedy Jr. to make a big announcement on the cause of autism by the end of September.
Trump administration officials said the announcements this week were the first of many on autism in the coming years.
The claims at the press conference alarmed many autism advocates and experts in the field.
“Today’s White House event on autism was filled with dangerous claims and misleading information that sends a confusing message to parents and expecting parents and does a disservice to autistic individuals,” said Dr. Susan J. Kressly, president of the American Academy of Pediatrics. “Regarding autism, we know it is complex, highly variable and increasingly linked to genetics. There is no single, root cause of autism, and there is no single medication that will give every autistic child or adult what they need.”
In addition, Alison Singer, president of the Autism Science Foundation, raised questions about the timing.
“We are unsure why this announcement came today and how the conclusions were drawn,” she said. “No new data or scientific studies were presented or shared. No new studies have been published in the literature. No new presentations on this topic were made at scientific or medical conferences. Instead, President Trump talked about what he thinks and feels without offering scientific evidence.”
Advocates also warned that Trump’s comments suggesting that pregnant women should “tough it out” rather than take Tylenol hearkened back to an outdated view of autism.
“When public officials talk about autism, their words carry weight. Too often, those words have painted the diagnosis of autism as a tragedy, erasing the dignity and humanity of autistic people,” said Katy Neas, CEO of The Arc of the United States. “We remember the days when autism was cruelly blamed on so-called ‘refrigerator mothers.’ We cannot allow stigma, stereotypes and fear drive our public health priorities.”
Only a handful of small studies have been done looking at leucovorin as an autism treatment, according to the Coalition of Autism Scientists, a group of more than 300 researchers in the field. While the researchers said that a rigorous, large-scale trial is warranted, they indicated that “it is premature to claim that leucovorin is an effective treatment for autism.”
With regard to acetaminophen, a recent analysis suggested an association between use during pregnancy and autism, but the findings did not account for the fact that fever during pregnancy is a known autism risk and that’s often why expectant mothers take the drug, the Coalition of Autism Scientists said.
“Rather, the most recent, rigorous study that controlled for unmeasured familiar risks found that acetaminophen did not cause autism,” the group said.
Even the FDA acknowledged that the science on acetaminophen is inconclusive.
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RFK Jr.’s Team Wanted to Tout an Autism Therapy. He Went After Tylenol Instead.
By Liz Essley White, The Wall Street Journal, September 24, 2025
Health Secretary Robert F. Kennedy Jr.’s team had decided by the beginning of September to tell Americans that acetaminophen, the active ingredient in Tylenol, was a possible cause of autism. But officials were divided over how much emphasis to put on the painkiller and were planning to discuss it as one of many possible causes, people familiar with the matter said.
Doctors that Kennedy had selected to lead key agencies under him—Jay Bhattacharya, Mehmet Oz and Marty Makary—suggested the big story should be leucovorin, a little-known generic drug in which they saw promise for alleviating autism symptoms.
But a meeting with Tylenol’s maker convinced Kennedy to put the emphasis on acetaminophen.
Kennedy spent the first weekend of September poring over acetaminophen studies and calling scientists. After summoning Kirk Perry, interim CEO of Tylenol manufacturer Kenvue, Kennedy’s mind was set. He found Kenvue’s evidence in support of the drug to be poor, and became convinced that he had a moral duty to get the word out about the risk of acetaminophen as soon as possible, the people said.
President Trump was thrilled with Kennedy’s plan, the people said, even though Bhattacharya, Oz and Makary had advocated for putting the emphasis on leucovorin. Trump relished the chance to tell the world their possible reason for why one in 31 children nationwide had been diagnosed with autism, the people said. Trump for years has publicly aired his keen interest in the condition.
The top doctors agreed generally that acetaminophen was worth warning women about, and that the evidence pointed to the need to be cautious with the drug.
The result was the explosive White House news conference Monday, when the president laid out in no uncertain terms that pregnant women should avoid Tylenol (“Don’t take it”), despite the mixed evidence linking the painkiller to autism. The event stunned many of the nation’s doctors and public health experts, some of whom called Trump’s actions dangerous.
In the end, Trump and Kennedy went with their own messaging instincts, and leucovorin became more of an afterthought. Trump didn’t mention it by name at the press conference, giving only a passing mention to a new label for “an existing drug” that may help alleviate autism symptoms. “That’s one of the things that I’m very, very happy about,” he said.
“President Trump pledged to address America’s skyrocketing rates of autism, and his team is deploying Gold Standard Science to deliver on this pledge,” White House press secretary Karoline Leavitt said.
A spokesman for the Department of Health and Human Services said: “HHS’ actions mark historic progress in tackling the autism epidemic—just as Secretary Kennedy promised.”
Some studies have shown a potential link between acetaminophen and autism, such as a 2020 Johns Hopkins study cited by administration officials. But other studies found no link, including a 2024 study of 2.4 million Swedish children that found no association between acetaminophen and autism. Professional societies representing obstetricians continue to say pregnant women should use acetaminophen to treat pain and fever.
“The facts are that over a decade of rigorous research, endorsed by leading medical professionals and global health regulators, confirms there is no credible evidence linking acetaminophen to autism,” a spokeswoman for Kenvue said.
Continued
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[Please click on blue link to view information about the bill]
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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