November 21, 2025

Even in the Face of Winter...

Hope Springs Eternal!

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.

November is

National Family Caregivers Month!

VOR Podcasts!

Episode 5 - Roslyn Leehey!

This week, Casey and Brenna speak with VOR's Roslyn Leehey about her son Teddy, the services he receives in an HCBS group home, and their shared experiences.

Many of you have met Roslyn as the host of our

VOR Networking Meetings.

This is your chance to hear her tell her story!

See this, and other Brenna and Casey's other podcasts

on our YouTube page!

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 eight weeks.

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

Like that little squirrel pictured above, gathering nuts for the months ahead, so it is with VOR.

The contributions we receive in the our fall/winter fundraising campaign cover a significant portion of our expenses in the year ahead.

Please contribute,

so that we may continue to help families like yours.

Express your gratitude to the

Direct Support Professionals

in your life

with a little something extra this year...

Once again, we have partnered with See's Candies in our 2025 Year-End Fundraising Campaign.

See's has agreed to give us a share of the profits for each box sold.

The idea is not to replace our regular appeal for donations,

but to enhance our fundraising efforts by offering delicious See's Candies to our folks who wish to send gifts to family and friends over the holidays.

You may start ordering now.

Candy will begin shipping on November 10, 2025

The last day to order is December 5, 2025

~~ Free Shipping on all orders over $75 ~~

(Except to PO Boxes as extra packaging is required)

States’ Management of Medicaid Home Care Spending Ahead of H.R. 1 Effects

Authors: Maiss Mohamed, Alice Burns, and Molly O'Malley Watts, KFF, November 20, 2025

State Findings

Over one-third of Medicaid spending pays for long-term care, with most of the spending paying for home care—also known as “home- and community-based services” or HCBS. Medicaid pays for almost 70% of all home care spending in the U.S., nearly all of which is provided through optional services. Among those optional services, states rely heavily on Medicaid “waivers” to provide home care, which allow them to manage costs using mechanisms such as capping spending or enrollment in the waiver (Box 1). States may also use waiting lists to track and manage people who want to receive but are not yet receiving home care. While waiting lists may result from caps on waiver spending or enrollment, states also used them for other administrative reasons.

Medicaid’s significant spending on home care and the availability of mechanisms for limiting such spending could spur states to cut home care spending in response to the 2025 reconciliation law. Cutting spending on home care could result in either fewer people receiving any benefits or people receiving fewer covered services, even though the need for home care is unlikely to fall in future years. The recently passed reconciliation law is estimated to reduce federal Medicaid spending by $911 billion between 2025 and 2034, roughly a 14% reduction in federal funding for the program. During the last major reduction in federal Medicaid spending, all states reduced spending on home care by serving fewer people (40 states) or by cutting benefits or payment rates for long-term care providers (47 states).

Mechanisms for Limiting Waiver Home Care Spending and Enrollment

Most states (37) manage Medicaid spending on home care by capping either total enrollment, or both total spending and enrollment (Figure 1). Most states also cap per person spending for home care waiver services. The two primary types of waivers states use to offer Medicaid home care are 1915(c) and 1115. The two waivers differ in that 1915(c) waivers are specifically used to provide Medicaid home care to people who require an institutional level of care whereas 1115 waivers can test all types of new Medicaid approaches (Box 1). Among the 50 responding states that provide home care through waivers, 15 states have caps on total waiver spending, 37 have caps on the total number of participants, and 37 have caps on spending per person.

Use of caps on total spending, participation, or costs per participant were reported in 44 states (Figure 2). Among the 50 responding states with waivers, 44 had caps of some sort, including 15 with caps on total spending, 37 with caps on total participants and 37 with caps on spending per participant. For both 1915(c) and 1115 waivers, states are required to meet cost neutrality requirements to demonstrate that the costs per enrollee in waiver services do not exceed the per enrollee costs of institutional care (Box 1).

States may meet this requirement by showing that average costs per enrollee are below the average costs of institutional care or they may establish cost limits for all participants enrolled in the waiver. States that adopt such individual cost limits must specify the safeguards in place to address people’s needs after they have reached the individual cost limit.

Read the full article here

A Look at Waiting Lists for Medicaid Home- and Community-Based Services from 2016 to 2025

By Alice Burns, Abby Wolk, and Molly O'Malley Watts, KFF, November 20, 2025 

Medicaid is the primary payer for long-term care (LTC) in the United States, and pays for more than two-thirds of the LTC delivered in home- and community-based settings. Most home care (also known as “home and community-based services” or HCBS) is optional for states to provide and is frequently offered through “waivers,” which allow states to cover a wide range of benefits and to choose—and limit—the number of people who receive services. KFF estimates that 5.1 million Medicaid enrollees use home care, and that about half of people are using home care through waivers. States’ ability to cap the number of people enrolled in home care waivers can result in waiting lists when the number of people seeking services exceeds the number of waiver slots available.

On July 4, President Trump signed the “One Big, Beautiful Bill,” that includes significant changes to the Medicaid program. The Congressional Budget Office (CBO) estimates that the new law will reduce federal Medicaid spending over a decade by $911 billion. Given the substantial share of Medicaid spending that pays for home care, and the optional nature of most home care programs, cuts to home care programs could occur as states look for ways to respond to the reductions in federal spending. If states cut home care by reducing the number of people who can receive waiver services, waiting lists could increase. Waiting lists could also increase on account of changes to immigration policy in states that use waiting lists to manage shortages of home care workers, one-in-three of whom are immigrants. The Trump Administration has made notable changes to immigration policy focused on restricting entry at the border and increasing interior enforcement efforts to support mass deportation. Those changes place increased pressure on the home care workforce, a sector that was already facing workforce shortages. 

This data note provides new information about waiting lists in Medicaid home care before many of the provisions in the reconciliation law go into effect. Waiting lists are an incomplete measure of unmet need and are not necessarily comparable across states or over time. Because of those considerations, the number of people on waiting lists could either increase or decrease in response to the federal Medicaid cuts.

The data come from the 23^rd KFF survey of officials administering Medicaid home care programs in all 50 states and the District of Columbia (hereafter referred to as a state), which states completed between April and July 2025. The survey was sent to each state official responsible for overseeing home care benefits (including home health, personal care, and waiver services for specific populations such as people with physical disabilities). All states except Florida responded to the 2025 survey. Survey findings are reported by state and waiver target population, although states often offer multiple waivers for a given target population.

Key takeaways include:

• Forty-one states maintain waiting lists or interest lists for people who would like to receive home care, a number that fluctuated little between 2016 and 2025.
• In all years since 2016, there have been at least 0.5 million people on waiting lists or interest lists, with a total of over 600,000 in 2025.
• In 2025, 12 states reported having at least one new waiting list (across 20 waivers), and 29 states reported an increase in the number of people on waiting lists or interest lists compared with only 12 states reporting a decrease.
• Most people on waiting lists or interest lists have intellectual or developmental disabilities (I/DD) and most live in states that do not screen any people for eligibility prior to adding them to waiting lists.
• Most people on waiting lists or interest lists are eligible for personal care provided through states’ regular Medicaid programs or for services provided through specialized state plan home care benefits.

Continued

When the G.O.P. Medicaid Cuts Arrive, These Hospitals Will Be Hit Hardest

Republicans created a special $50 billion fund to help rural hospitals stay afloat, but the biggest impacts may be in cities.

By Emily Badger, Alicia Parlapiano, and Margot Sanger-Katz, The New York Times, November 18, 2025

In a typical year, more than 100,000 Medicaid patients depend on the emergency department at Martin Luther King Jr. Community Hospital in South Los Angeles, in a predominantly Hispanic and Black community where residents have high rates of diabetes, heart failure and pneumonia.

In a sense, the hospital depends on them, too, with its fragile finances resting on payments tied to Medicaid, the federal health insurance program for the poor.

In the coming years, steep cuts to the program, enacted by Republicans in their signature policy bill this year, will destabilize this precarious balance for M.L.K. and other urban safety-net hospitals across the country.

As Republican lawmakers debated the legislation, which cut more than $1 trillion in federal health care spending to help offset large tax cuts, key senators worried the changes would shutter rural hospitals. But a new analysis led by Harvard researchers suggests that many of the hospitals most at risk of closing services — or even their doors — look more like M.L.K.

The analysis deemed 109 hospitals most exposed to the coming Medicaid cuts, because they share three risk factors: They serve vulnerable communities, their finances are already fragile, and more than a quarter of their patients rely on Medicaid. Of those hospitals, 85 percent were in urban areas.

“Urban” hospitals here include any in a metropolitan area, including inner suburbs. Those in large, central metropolitan areas are disproportionately vulnerable, according to the analysis. Hospitals in such places make up just 18 percent of all hospitals in the country, but they represent half of the most at-risk ones.

In interviews, officials at these urban hospitals described scrambling to plan service cuts and hiring freezes and to shelve capital projects and basic repairs, even with most of the law’s Medicaid cuts still a year or more away. Many will at minimum close departments, like obstetrics and behavioral health programs. Lurking behind the plans were the worst-case fears that hospitals could close.

Continued

Rep. Tom Kean pushes for National Disability Ombudsman, modeled after NJ watchdog

By Gene Myers, The Courier Post (North Jersey. com) November 17, 2025

U.S. Rep. Tom Kean Jr. is developing federal legislation to create the nation’s first ombudsman for people with disabilities, much like the watchdog office he helped establish in New Jersey in 2018.

Speaking at the October meeting of the New Jersey Legislative Disability Caucus, the Republican congressman said his staff “is currently working on legislation that would establish a national intellectual and developmental disabilities ombudsman,” modeled after the state's version and the existing federal long-term care ombudsman.

“My goal is to ensure that this country can have access to the help and protection that New Jersey families now have,” Kean said of the state position, created with bipartisan support when he was a member of the state Legislature.

Noelle Berriet, Kean’s communications director, confirmed the effort in an email.

“Our legislative team is still in the early stages of drafting the bill. We are working closely with the Congressional Research Service, disability advocates and other entities to determine the bill text, scope, introduction timeline, etc.,” Berriet wrote. “The goal is to build on the success of the New Jersey ombudsman office that the congressman helped establish seven years ago.”

An estimated one in four U.S. adults — about 70 million people — reported having a disability in 2022, according to the U.S. Centers for Disease Control and Prevention.

Similar to the Garden State office, a federal ombudsman would serve as an independent advocate for families — helping them navigate programs, resolve issues with agencies and make their voices heard in government.

New Jersey’s first disability ombudsman, former Ridgewood Mayor Paul Aronsohn, still holds the position. He serves within the state Treasury Department and prepares annual reports for Gov. Phil Murphy — often with candid details about the shortcomings of state programs and private health care providers.

Aronsohn, working with a small staff, has documented recurring issues such as workforce shortages and inconsistent oversight and abuse in group homes.

His reports highlight potential solutions and catalogue services available to New Jerseyans with developmental disabilities.

One of the strongest arguments for a national office is the sheer complexity of disability services. Families “don’t know what they don’t know,” Aronsohn said in an interview, and they often need a single office that can explain options, resolve disputes and connect them to the right programs.

Continued

IDEA is 50 Years Old — And at Risk    

By Cindy Long, NEA Today, November 14, 2025

November 29 marks the 50^th anniversary of the Individuals with Disabilities Education Act (IDEA).

It’s cause for celebration, but also action, education advocates say. 

When nearly every special education expert at the Department of Education was fired in October, the aim of the Trump Administration was clear: to dismantle the Department of Education, as outlined in Project 2025, move some functions to other agencies, and erode the hard-won rights of public school students. 

With the passage of IDEA 50 years ago, America made a promise to students with disabilities and their families that they could participate fully in learning and reach their potential, says NEA President Becky Pringle.

Celebrating and protecting that promise “goes to the very heart of who we are as a nation. Every student, no matter where they live or whether they have a disability. deserves the opportunity to learn and grow in their neighborhood public school,” Pringle says. “A school that has the resources to meet their uniquely individual needs; a school where inclusion and equity aren’t just words but are the values that shape everything we do.”

As we mark the 50^th anniversary, parents and advocates are encouraging everyone to join them in the fight to preserve IDEA in the Department of Education. 

Since the anniversary also coincides with the holiday season, it’s an ideal time to spread the word about why protecting students’ rights is so important. 

In the season of giving, NEA Today compiled some thoughtful, respectful responses to comments and questions of even the most skeptical in your holiday gatherings.

Continued (Click here to see how you can support IDEA)

Arizona families in limbo after sharp rise in disability spending strains state budget

By Abigail Wilt, Cronkite News (AZ PBS), November 17, 2025

Nine-year-old Faith Todd has Wolf-Hirschhorn syndrome, epilepsy and autism, conditions that put her at constant risk of seizures, choking and falls without close supervision. 

Her mother, Amber Todd, a former EMT who paused her career to care for Faith full time, has intervened and saved her daughter’s life more times than she can count. 

The family lives in rural Greenlee County and is among thousands across Arizona that rely on state funding through the Division of Developmental Disabilities to care for loved ones. 

That support is now uncertain as the division revises eligibility following a sharp increase in program spending. According to recent reports, DDD spent $77 million on attendant care and habilitation services in 2019. In just five years, the amount grew to $614 million. 

During a town hall in late September, DDD Assistant Director Zane Garcia Ramadan told attendees that the spending was “unsustainable.” 

DDD released a statement, explaining the agency “is currently supporting more people and providing more services than ever before. This kind of growth does not align with budgetary increases, which places strain on the delivery system.”

Faith sat next to Todd, intermittently resting her head on her mom’s arm as Todd told Cronkite News what it would mean for them to lose access to the funding they receive to keep Faith safe and comfortable in her own home. 

“Families like mine are facing housing instability, food instability, mental health crisis over this. It is a very, very scary time,” Todd said. 

Continued

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`

Related Story:

Judge halts Medicaid reimbursement cuts for autism services in North Carolina

By Sarah Clements, The Daily Tar Heel, November 17, 2025

On Nov. 10, a Wake County judge granted a preliminary injunction halting the North Carolina Department of Health and Human Services' Medicaid reimbursement cuts for autism care service providers.

The NCDHHS imposed cuts between three and 10 percent on all Medicaid providers in early October amid a funding standoff over the state’s lack of a biennial budget that has resulted in no deal to fully fund the Medicaid rebase. Research-Based Behavioral Health Treatments — including applied behavior analysis therapy, which uses positive reinforcement to build communication skills — faced a maximum 10 percent cut. 

The parents and guardians of 21 children with autism who receive or are waitlisted for autism therapy through the Medicaid program sued the NCDHHS and the N.C. Secretary for Health and Human Services, Devdutta Sangvai, in late October, arguing that autistic North Carolinians were unfairly singled out for the highest rate cuts, which they claimed was in violation of the Americans with Disabilities Act and North Carolina's Persons with Disabilities Protection Act. 

In a letter to the N.C. General Assembly in August, announcing the changes, Sangvai wrote that the organization was $319 million short of its $819 million rebase target, making the cuts necessary. 

Access to ABA therapy is limited in North Carolina, with some families forced to wait for up to a year before beginning treatment. Demand has increased exponentially, with total Medicaid spending on RB-BHTs projected to increase by 425 percent, including the rate reductions, from 2022. 

Continued

'This is a basic need': Families, providers, advocates implore Colorado to reconsider proposed Medicaid cuts

By Colette Bordelon, Denver 7 News, November 18, 2025

With a budget deficit looming over the State of Colorado next year, one program in particular is under the microscope: Medicaid.

A special session tackled some of the anticipated $1.2 billion budget shortfall, which was created in part by tax changes made in President Donald Trump's One Big Beautiful Act (H.R.1). As a result, Colorado will collect less revenue than expected when lawmakers approved the state budget in May.

Some of that $1.2 billion revenue loss was absorbed by the state education fund and the affordable housing fund. Around $300 million that the state had in surplus, which would have been refunded to taxpayers, will be used to help fill the gap.

During the special session, lawmakers cut corporate tax breaks by about $250 million. They left it to Gov. Jared Polis to make spending cuts and to determine how much to borrow from state reserves.

Just after the special session concluded, Polis announced a total of $250 million in cuts and redirected spending in order to balance the state budget.

The Department of Health Care Policy and Financing (HCPF), which administers Colorado's Medicaid program, makes up roughly one-third of the total General Fund appropriations for the next fiscal year. Polis called Medicaid the "fastest-growing part" of the budget when he presented his proposal to the Joint Budget Committee (JBC) last week. 

Continued

Addressing Emotion Dysregulation in Autism Spectrum Disorder: Outcomes of Regulating Together

Please join us for the next presentation in our 2025-2026 Duke Center for Autism Seminar Series. Our speaker, Dr. Rebecca Shaffer, specializes in neurodevelopmental disorders including autism spectrum disorder (ASD) and fragile X syndrome. She has a strong interest in emotion regulation and intervention for emotion dysregulation. Dr. Shaffer is a co-creator of Regulating Together, a group intervention addressing emotion dysregulation for autistic youth. Her lab has several federally funded trials examining the efficacy of Regulating Together as well as a canine-assisted version of Regulating Together. Dr. Shaffer believes in empowering families and youth with the skills they need to manage stress and strong emotions, particularly those impacted by disparities. Her work also focuses on the inclusion of stakeholders at every stage of research and building community engagement to increase research participation. This talk will describe how emotion dysregulation presents in autism, an overview of the Regulating Together program, and outcomes of the intervention across trials.

REGISTRATION IS REQUIRED - please register in advance here

Large-Scale Study Finds Autistic Youth Far More Likely to Be Hospitalized for Mental Health Conditions

By Catalight, Autism Spectrum News, November 3, 2025

Authors Call for Multifaceted Approach in Addressing Critical Care Gap

Autistic youth are hospitalized for mental health reasons at dramatically higher rates than their non-autistic peers, according to a new peer-reviewed study led by Catalight researchers Ben Pfingston and Lindsey Sneed, Ph.D., BCBA. The research also explored differences in the quality and cost of hospital stays; however, those findings were analyzed separately and may not be directly explained by mental health factors.

Using data from the Healthcare Cost and Utilization Project’s 2019 Kids’ Inpatient Database, one of the largest national samples available (representing 48 states and more than more than 42,000 autistic hospital admissions and over 1.2 million non-autistic admissions), the team compared mental health hospitalizations for children and young adults ages 2–20 with and without autism.

Key Findings:

• 36% of autistic youth admissions were for a primary mental health or behavioral health condition – compared to 21% among non-autistic youth
• 45% of autistic hospital admissions included at least one mental health diagnosis, versus 27% of their non-autistic peers
• Autistic youth admitted with mental health conditions were younger, stayed longer and had greater severity of illness, driving up hospital charges

“Mental Health Disparities in Hospital Admissions for Youth with and Without Autism” was published in the Journal of Social, Behavioral and Health Sciences in August 2025.

“These findings reinforce what we see in practice every day,” said Dr. Sneed, the vice president of clinical excellence at Catalight – one of the largest non-profit behavioral health networks in the United States. “Autistic individuals face greater mental health challenges, but they often aren’t getting the help they need until a crisis lands them in the hospital. We need to be meeting their needs earlier.”

The study highlights a critical gap in mental health care: Many autistic youth are not receiving timely or autism-informed outpatient support. By the time they are hospitalized, their symptoms are more severe, and treatment is more complex.

“This is a national issue of access and equity. Autistic children and young adults aren’t getting the mental health care they need,” said Pfingston, Catalight’s senior research and data analyst who was diagnosed with autism at age 11. “If we can train providers and create systems that meet these needs earlier, we can vastly improve outcomes and reduce burdens.”

The authors urge a multifaceted approach to address the disparities, including better clinician training so that hospital staff, psychiatrists and mental health professionals are equipped to recognize and respond to the unique needs of autistic youth.

“Most people assume their mental health providers know how to work with autistic individuals but, in reality, very few receive any formal training,” Dr. Sneed said. “Even psychiatrists and psychologists often lack the tools to recognize how mental health issues present differently in autistic patients. That gap in knowledge can delay diagnosis, delay treatment and ultimately lead to a crisis that might have been preventable.”

Pfingston added that one of the most dangerous mistakes providers make is when depression and other severe mental health issues are dismissed as “just autism.”

“Our data shows that nearly half of autistic youth admitted to hospitals have a mental health diagnosis and we know from other research that suicide rates are tragically high among autistic people” he said. “When professionals overlook changes in behavior or assume depression or suicidal thoughts are simply a symptom of autism, they risk missing a critical window for intervention.”

Pfingston and Dr. Sneed also call for earlier support which can come in the form of school counseling, community-based mental health services and telehealth as a way to intervene before challenges escalate to the point of hospitalization. The importance of fostering social connection, building greater awareness about autistic and mental health issues, and encouraging family support systems can’t be overlooked either, they said.

“Adaptations in communication, environment and expectations can make a huge difference,” said Dr. Sneed. “We need to equip mental health professionals with the right knowledge in order to serve the autistic population equitably and prevent more tragedies.”

Read the full article here

Millions of Kids Are on ADHD Pills. For Many, It’s the Start of a Drug Cascade.

By

Shalini Ramachandran, Betsy McKay, and Tom McGinty, The Wall Street Journal, November 19, 2025

Danielle Gansky was 7 years old when an administrator at her upscale private girls’ school in suburban Philadelphia flagged problems with her academic performance. She was a bubbly and creative kid, but she was easily distracted in class and her schoolwork was sloppy.

The school told Gansky’s mother that the girl should see a psychiatrist, who diagnosed her with attention-deficit/hyperactivity disorder, or ADHD, and prescribed a stimulant. Concerned that Danielle might get kicked out if her focus didn’t improve, her mother broke into tears and agreed. But the pills made Gansky agitated, moody and angry. So another doctor put her on Prozac. 

More pills followed. Over the years, Gansky was always on two and sometimes three or more psychiatric drugs at once. By her late 20s, she had taken 14 different kinds of psychiatric pills.

None of it ever felt right. The pills dulled her mind and made her irritable or sleepy. But when Gansky complained about the drugs, her doctors would up her dose or try another medication.

“I was living in a body hijacked by the medication,” said Gansky, 29, who is still struggling to wean herself off an antidepressant. “I didn’t have the words or authority to challenge what I was being told.”

Tens of thousands of kids who take prescription ADHD medication also wind up on other powerful psychotropic drugs—including antipsychotics and antidepressants, studies show. For some of them, the ADHD drugs themselves can be a trigger, according to doctors, patients and psychologists, who say additional medications are often prescribed to manage side effects such as insomnia, despite limited scientific evidence supporting these combinations in young, developing brains. 

About 7.1 million American children ages 3 to 17 have an ADHD diagnosis, according to an analysis of 2022 federal data. About half took ADHD medication for it that year, and prescriptions are growing.

The decision to treat ADHD with medication is often made by desperate parents trying to keep their kids from falling behind or being kicked out of school or daycare, parents and mental health clinicians say. For preschool-age kids, the drugs are often dispensed against pediatric guidelines, which call first for behavioral therapy, a treatment that can be hard to get. And mental health providers say the drugs are frequently prescribed to treat childhood trauma that has been misdiagnosed as ADHD.

For one in five kids who take them, ADHD drugs are just the beginning. A Wall Street Journal analysis of Medicaid data from 2019 through 2023 shows that children who were prescribed a medication for ADHD were far more likely to take additional psychiatric drugs over the ensuing four years.

The Journal compared about 166,000 children aged 3 to 14 who started on ADHD medications in 2019 to kids who didn’t. The medicated group was more than five times as likely to be on additional psychiatric medications four years later. Factors such as differences in sex, race and foster-care status didn’t explain the gap.

Continued

CDC website is changed to include false claim about autism and vaccines

By Kerry Breen, Michael Kaplan, and Dr. Celine Gounder, CBS News, November 20, 2025

A page of the Centers for Disease Control and Prevention's website was changed to include a false claim about autism and vaccines. Multiple CDC officials familiar with the situation said the change was made by political appointees inside the Department of Health and Human Services without input from relevant agency staffers. 

The page about vaccines and autism formerly said that "no links have been found between any vaccine ingredients and Autism spectrum disorder." The website has now been changed to say, "'Vaccines do not cause autism' is not an evidence-based claim" — a statement the Autism Science Foundation calls "misinformation" that "actually contradicts the best available science." The CDC page also falsely claims that studies supporting a link between vaccines and autism have "been ignored by health authorities."

Previously, changes have only occurred in consultation with subject matter experts at the agency's National Center on Birth Defects and Developmental Disabilities and its National Center for Immunization and Respiratory Diseases. The CDC sources told CBS News political appointees at HHS devised the change and instructed an employee inside the office of acting CDC Director Jim O'Neil to make it. 

The debunked theory that the measles, mumps and rubella vaccine causes autism has its roots in a 1998 study that was found to be fraudulent and has been retracted. Since then, "independent researchers across seven countries have conducted more than 40 high-quality studies involving over 5.6 million people," said American Academy of Pediatrics president Susan Kressly in a statement decrying the website change. 

"We are at a very dangerous moment for the health of America's children," said Dr. Sean O'Leary, chair of the AAP's Committee on Infectious Diseases, in a news briefing on Thursday.  

"There is overwhelming evidence that vaccines do not cause autism," said Dr. Mandy Cohen, a former CDC director. "This change to CDC language undermines the agency's scientific integrity, damaging its credibility on vaccines and other health recommendations. Most concerning, it risks endangering children by driving down vaccination rates and leaving kids vulnerable to preventable diseases like measles and whooping cough."

In a statement, HHS communications director Andrew Nixon said, "This is a common-sense update that brings CDC's website in line with our commitment to transparency and gold standard science.

"As the updated page explains, the claim that 'vaccines do not cause autism' is not supported by comprehensive evidence, as studies to date have not definitively ruled out potential associations. Some research suggesting possible biologic mechanisms has been ignored or dismissed by public health agencies, and HHS is committed to finding a definitive answer," Nixon said.

Leading autism advocacy groups dispute that. 

The Autism Science Foundation said in a statement it was "appalled" by the change to the CDC's website, and highlighted the decades of research into the topic. Alison Singer, the co-founder and president of the ASF, said that while researchers "can't do a scientific study to show that something does not cause something else," there are a "mountain of studies that we have exonerating vaccines as a cause of autism."

"I think the question of whether vaccines causes autism is one that science can answer, and science has answered it," Singer said in Thursday's news briefing.

A subhead saying that "Vaccines do not cause autism" remains on the CDC website with an asterisk next to it. The bottom of the page explains that the header remains in place because of an agreement with Louisiana Republican Sen. Bill Cassidy, a physician who is the chair of the Senate Health, Education, Labor, and Pensions Committee and backed HHS Robert F. Kennedy Jr. during his confirmation hearings. Cassidy said Sunday on "Face the Nation with Margaret Brennan" that he supported Kennedy in part because of "serious commitments" from the Trump administration, but did not specify what those were. 

"I'm a doctor who has seen people die from vaccine-preventable diseases," Cassidy wrote on social media on Thursday afternoon. "What parents need to hear right now is vaccines for measles, polio, hepatitis B and other childhood diseases are safe and effective and will not cause autism. Any statement to the contrary is wrong, irresponsible, and actively makes Americans sicker." 

Cassidy highlighted recent outbreaks of whooping cough and measles. He also called for more research into "the real causes of autism," and criticized HHS funding cuts. 

"Redirecting attention to factors we definitely know DO NOT cause autism denies families the answers they deserve," Cassidy wrote.

Other health agency pages with information about autism and vaccines had not been changed as of early Thursday afternoon.

Kennedy has previously pushed the discredited claim that routine childhood shots cause autism. President Trump has also falsely suggested vaccines could be to blame for autism rates. Both expressed concern about rising rates of autism diagnoses, which appear to be driven by a variety of factors including increased awareness and changes in how the condition is diagnosed. 

O'Leary said he feared the website changes would "scare parents and further stigmatize" people with autism. 

"We have been dealing with these falsehoods for many years. They are not new. We have been promoting the science, and we're going to continue to do that, as are the other professional societies," he said. "The problem is now it's coming from, these falsehoods are coming for our federal government." 

Read the full article here

Please share this offer with your loved one's

Direct Support Professionals!

VOR ❤️s OUR

DIRECT SUPPORT PROFESSIONALS!

Our loved ones' caregivers are essential to their health, safety, and happiness.

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

We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.

If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at

info@vor.net

with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.

[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. 

FACEBOOK: /VOR ----- TWITTER: @VOR_NET -----

Visit our YouTube Page

And visit our YouTube Archives here