April 18, 2025

Happy Easter!

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 not too late to join!

May 12-14, 2025

VOR's Annual Legislative Initiative

Washington, D.C.

We will meet in D.C. on May 12th - 14th

for meetings with

Congressional Staff and Federal Agencies

to discuss issues of critical importance to

individuals with severe or profound I/DD and autism

and their families.

This year's topics are expected to include:



Preventing Cuts to Medicaid

and

Rebuilding and Supporting our DSP Workforce

This event is open to all members of VOR

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This is a critical time for our families.

The actions taken by Congress and the Administration

in the next few months could impact the lives of

hundreds of thousands of people with I/DD and autism in the years to come.

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As Congress considers ways to help pay for extending tax cuts, some lawmakers have suggested that hundreds of billions of dollars in federal savings could be achieved by addressing fraud, waste and abuse in the Medicaid program.

At 12 p.m. ET on Thursday, April 24, three experts join Health Wonk Shop series moderator Larry Levitt in an hour-long discussion designed to unpack claims about fraud and abuse and put them in a larger context. The event will address such questions as: How do state Medicaid programs ensure program integrity and what does it take to go after fraud? What are the trade-offs? How substantial is fraud and abuse relative to total Medicaid spending? How do fraud and abuse relate to improper payments? 

This is a critical time. the 119th Congress is about to begin the process of trying to write a bill to extend and increase President Trump's tax cuts. To do so, they need to balance the cost of those cuts by making drastic cuts to Medicaid, among other social services that aid America's most vulnerable and most in need.

Not all Republicans are happy about this, and several are breaking from the party line. Yet, and we have seen this before, there's a strong chance they are merely posturing, and will come together to make these cuts and pass the tax cuts.

Meanwhile, the Trump administration has been finding other ways to cut Medicaid, separate from the cuts they want from Congress. They have cut the Department of Health and Human Services' workforce by about 20,000 persons, and are cutting the agency's annual budget from $121,000 billion to $80,000 billion. That's not going to help our folks. They have cut funding for the medical research that has helped determine the true nature of our loved ones' disabilities. They have cut back on special education. And now, they are cutting back on "extras" like transportation, housekeeping, internet access, and other essential services that are not directly related to treatment.

Please reach out to your members of Congress, your governors, and your local officials, and demand an end to these cuts. Your voices and your stories can make a difference.

One of the most closely watched parts of the GOP’s sprawling House Energy and Commerce

domestic policy bill could start coming together in less than a month. Chair Brett Guthrie (R-KY)

The House Energy and Commerce Committee could meet as soon as the week of May 5 to begin marking up its portion of the party-line package central to President Donald Trump’s agenda, according to nine people with granted anonymity to describe private deliberations.

The panel is tasked with making $880 billion in spending cuts from the programs under its jurisdiction — including Medicaid, the joint federal-state safety net program for health care.

The size and shape of those cuts emerged as a major flash point for Republicans as they haggled over the budget framework for the mega bill, which is set to include tax cuts, beefed-up border security, energy policy and more. That blueprint, finalized last week, set a May 9 target for committees to finish their markups, though that is not a binding deadline.

House GOP leaders are also pushing for the Agriculture Committee — which has been ordered to cut $230 billion, likely from the country’s largest food assistance program for low-income Americans — and several other panels to hold their markups the first week of May, according to three other Republicans with direct knowledge of the matter.

Speaker Mike Johnson has said he wants committees to hammer out some details with their Senate counterparts over recess and hold markups when lawmakers return, though some House Republicans are warning that coordinating with the Senate will take more time. The timeline for the tax-writing Ways and Means Committee, for instance, remains in flux.

Energy and Commerce Chair Brett Guthrie told reporters last week he expects between $500 and $600 billion of the committee’s total spending cut target could come from health care programs, including Medicaid, with the rest coming from energy and telecommunications policies.

The Kentucky Republican has insisted those cuts would not result in people losing their current benefits, a claim that Democrats and some experts dispute.

“Hundreds of billions of dollars in Medicaid cuts will terminate health insurance for millions of Americans and shutter hospitals, doctors’ offices and nursing homes,” Sens. Ron Wyden (D-Ore.) and Jeff Merkley (D-Ore.), the ranking members of the Senate Finance and Budget Committees, respectively, wrote in an op-ed in the Portland Tribune Thursday.

Continued

The red lines begin: A dozen House Republicans say no to big Medicaid cuts

By Mica Soellner, Laura Weiss, Jake Sherman, Samantha Handler, John Bresnahan, Punchbowl News, April 16, 2025

If you’re looking for a sign that House Republicans are getting worried about cuts to Medicaid, here it is.

A dozen House Republicans are warning GOP leaders that they won’t back a reconciliation package that includes massive cuts to Medicaid, according to a letter first obtained by Punchbowl News.

It’s an escalation of what’s going to be the most difficult problem for Republicans as they try to pass President Donald Trump’s agenda in the coming months.

These moderate Republicans, many of them in key swing seats, are going to be locked in a battle of wills with conservative hardliners who want to slash federal spending, including Medicaid and other social safety net programs.

The fate of Republicans’ behemoth reconciliation bill — which will also carry key GOP priorities like tax cuts, a Pentagon spending hike and more border security funding — is linked to the Medicaid standoff.

Remember, House Republicans’ reconciliation plan includes cutting $880 billion under the House Energy and Commerce Committee’s purview, much of which will likely have to come from Medicaid.

The message: The moderate Republicans’ letter to House GOP leadership and Energy and Commerce Committee Chair Brett Guthrie (R-Ky.) says Medicaid cuts could threaten nursing homes and hospitals, especially in rural and underserved areas.

Here’s the key part:

“We support targeted reforms to improve program integrity, reduce improper payments, and modernize delivery systems to fix flaws in the program that divert resources away from children, seniors, individuals with disabilities, and pregnant women — those who the program was intended to help.

“However, we cannot and will not support a final reconciliation bill that includes any reduction in Medicaid coverage for vulnerable populations.”

The House Republicans who signed onto the letter include: Reps. David Valadao (Calif.), Don Bacon (Neb.), Jeff Van Drew (N.J.), Rob Bresnahan (Pa.), Juan Ciscomani (Ariz.), Jen Kiggans (Va.), Young Kim (Calif.), Rob Wittman (Va.), Nicole Malliotakis (N.Y.), Nick LaLota (N.Y.), Andrew Garbarino (N.Y.) and Jeff Hurd (Colo.).

It’s not clear exactly where these members will draw the line just yet, or if it’ll be the same across the group. There’s a general acceptance, for the most part, of cutting “waste, fraud and abuse” in Medicaid programs. But Republicans will clash over the specifics in the weeks ahead and that’s where things get tricky.

“There’s reasonable actions we can support like work requirements for able bodied adults without children and auditing the Medicaid list,” Bacon told us. “But there will not be the votes to cut Medicaid for those who need it or to the hospitals that we need to preserve.”

Continued

Read and download the letter here

Internal budget document reveals extent of Trump’s proposed health cuts

By Lena H. Sun, Carolyn Y. Johnson, Rachel Roubein, Joel Achenbach, and Lauren Weber, the Washington Post, April 16, 2025

The Trump administration is seeking to deeply slash budgets for federal health programs, a roughly one-third cut in discretionary spending by the Department of Health and Human Services, according to a preliminary budget document obtained by The Washington Post.

The HHS budget draft, known as a “passback,” offers the first full look at the health and social service priorities of President Donald Trump’s Office of Management and Budget as it prepares to send his 2026 fiscal year budget request to Congress. It shows how the Trump administration plans to reshape the federal health agencies that oversee food and drug safety, manage the nation’s response to infectious-disease threats and drive biomedical research.

The 64-page document calls not only for cuts, but also a major shuffling and restructuring of health and human service agencies.

Agencies are allowed to appeal to HHS for changes but have been told they cannot change the bottom line, according to a federal health official who spoke on the condition of anonymity because of the sensitivity of the negotiations.

While Congress often ignores the president’s budget request, this has not been a typical transition to a new administration. Trump and his allies in Congress have made clear they want to smash the status quo by drastically reducing the size of the federal government and scrubbing it of programs and research efforts seen as wasteful or contrary to administration priorities.

The administration already has downsized HHS by about one-fourth of its workforce, with about 20,000 imminent departures since Trump took office.

Continued

The $600 Billion Medicaid Maneuver on the Chopping Block

By Joseph Walker, The Wall Street Journal, April 14, 2025

An obscure set of state taxes on hospitals and other health providers is in the crosshairs of congressional budget cutters because the levies can lead to higher federal spending on Medicaid. 

Known as provider taxes because states impose them on hospitals, nursing homes and other facilities that provide healthcare, the taxes boost a state’s budget for funding Medicaid. That in turn attracts more matching federal dollars to fund the program—money that is ultimately directed back to the hospitals and clinics. 

If Congress were to restrict the taxes’ use to finance state Medicaid contributions entirely, it could save more than $600 billion over a decade, according to estimates by the Congressional Budget Office. That would go a long way toward achieving House Republicans’ plans to reduce federal spending by as much as $2 trillion to help offset the impact of extending President Trump’s income-tax cuts.

But the taxes have a strong constituency among state governors and legislators on both sides of the aisle. A big reason: Hospitals often tend to get back more in payments than they shelled out for the original tax, which shores up their ability to care for Medicaid patients.

Cutting the taxes “would be devastating,” said Stacey Hughes, executive vice president for government relations and public policy at the American Hospital Association. “It would certainly create a financial strain on the ability to continue to provide these services.”

Nearly every state uses provider taxes to raise money to finance their Medicaid health-insurance programs for low-income people and the disabled. 

Medicaid, which covers 79 million people, is run by the states and jointly funded with the federal government. Many states that levy provider taxes use the revenue to help cover their share.

Thanks to the taxes, many states are able to pay higher rates to hospitals and other providers than they otherwise could afford with their general funds. And because the U.S. government will cover as much as 90% of extra Medicaid spending under federal matching rules, the provider taxes can help states expand their programs without forking over much more themselves.

Continued

CMS Cuts Medicaid Funding For Some Non-Medical In-Home Services

By Morgan Gonzales, Home Health Care News, April 11, 2025

The Centers for Medicare & Medicaid Services (CMS) announced Thursday that it would no longer approve funding for some services previously covered by state section 1115 demonstrations, including some in-home non-medical services.

In a letter addressed to state Medicaid directors, CMS stated that the organization “did not anticipate” approving new federal funding for designated state health programs (DSHP) and designated state investment programs (DSIP) under section 1115 demonstration authority.

Among the examples of expenditures that would not be approved moving forward, CMS cited $241 million for a program in New York dedicated to non-medical in-home services, including housekeeping.

“Mounting expenditures, such as covering housekeeping for individuals who are not eligible for Medicaid or high-speed internet for rural healthcare providers, distracts from the core mission of Medicaid, and in some instances, serves as an overly creative financing mechanism to skirt state budget responsibilities,” a CMS statement read.

Other examples of services that CMS will no longer fund include a diversity in medicine initiative and grants to a labor union designed to reduce insurance costs for certain childcare providers.

People who receive services through section 1115 waivers overlap with the population of people receiving home- and community-based services, industry experts previously told Home Health Care News. 

Services provided under section 1115 waivers can improve access to care for the most vulnerable populations, Kristen Palumbo, chief operating officer and chief compliance officer of Innovive Health, told Home Health Care News.

Continued

As DOGE slashes services, disability advocates fight to maintain government lifelines

Cuts are already making it harder for people with disabilities to live in their communities

By Elizabeth Hlavinka, Salon, April 11, 2025

In January, Annie’s food stamps suddenly dropped down to $56 a month, roughly one-quarter of what she had been receiving for the past six years. Unable to work or drive due to her Crohn’s disease and a predisposition to seizures, she relies on services like the Supplemental Nutrition Assistance Program (SNAP) and FlexRide, a Medicaid program that provides transportation for people with disabilities.

But around the same time her benefits decreased, FlexRide started to become harder to access, too, she told Salon in a phone interview. She is concerned that cuts being debated at the federal government could make these services even less accessible.

“It’s very, very difficult to reach anybody,” Annie, who is using her first name only for privacy reasons, said about FlexRide. “The apps aren’t working a lot of the time, so I have to ask my folks to pay for Lyft, which is expensive.”

As the Trump administration continues to make sweeping cuts to federal agencies, people with disabilities are concerned that programs they need to survive will be caught in the crosshairs. Advocates are concerned that terminating diversity, equity and inclusion (DEI) initiatives will make “disability” a word like “gender” or “race” that can make grants ineligible for government funding. They also emphasize that closing the Department of Education could remove protections for students with disabilities. Many say dismantling the Administration for Community Living (ACL), which provides support for people with disabilities and aging populations, will make it harder for people to stay in their communities.

Although the administration said cutting ACL would not impact Medicaid, many are concerned that Medicaid cuts being proposed by Congressional Republicans will take away their health care, leaving them unable to pay for expensive services. Annie said she is already stockpiling some of her medications because she is afraid that she won’t be able to afford them if Medicaid is cut. One of her primary medications for Crohn’s costs roughly $4,000, she said.

“A lot of times with disabilities come chronic health issues, and so this can even be a life and death kind of thing,” said Dr. Joseph Stramondo, a philosophy professor at San Diego State University who specializes in bioethics and disabilities. “If we start cutting Medicaid … and defunding all these programs, that is a recipe for disaster when it comes to disabled people being able to access this sort of basic health care.”

Advocacy by people with disabilities is largely responsible for many of the laws designed to increase accessibility and equity that are currently in place. When people gathered across more than 1,400 "Hands Off" protests this weekend to resist some of the changes proposed by the Trump administration, advocates in the disability community who couldn’t attend met online. Then this week, hundreds of disability advocates protested the proposed cuts to Medicaid outside of the Capitol building.

A coalition of disability rights organizations including the American Association of People with Disabilities filed a lawsuit last week against the Social Security Administration, the Department of Government Efficiency (DOGE, which is not a government agency), and other government agencies alleging that these cuts unlawfully harm Americans with disabilities.

“Americans with disabilities deserve a functioning Social Security system, not arbitrary shutdowns and inaccessible service,” said AAPD president and CEO Maria Town in a statement. “We filed this lawsuit because disabled Americans are already suffering — and without urgent court intervention, the harm will only grow.”

Continued

State Medicaid Programs Face Decreased Federal Support For Older Adults And Individuals With Disabilities

By Laura M. Keohane, Health Affairs, April 11, 2025   

Many states are in the midst of finalizing budgets for the upcoming fiscal year. This year the task is especially challenging, and could be even more difficult in future years, as the federal legislature considers major Medicaid spending cuts. Medicaid is the one of the largest line items in state budgets, representing over a quarter of all spending allocated through states’ budgetary processes. Any state efforts to adapt to federal Medicaid cuts could impact dual-eligible beneficiaries with Medicare and Medicaid. Medicaid fills in the cracks and gaps in Medicare coverage for older adults and individuals with disabilities, covering everything from Medicare’s significant out-of-pocket costs to long-term services and supports. Medicaid spending on dual-eligible beneficiaries accounted for 32 percent of all Medicaid funding in 2022, or $244 billion in total state and federal spending.

The most pressing question on the table for older adults and adults with disabilities is whether Medicaid federal funding levels will be significantly reduced. Under the House budget resolution passed in February, Medicaid could face cuts in federal spending as large as $700-$880 billion dollars over the next 10 years. The higher end of that range represents a 11.8 percent cut in total federal Medicaid spending over the next decade. Although the more recent budget resolution passed by the Senate and House in April calls for much lower reductions in overall federal spending, it is still unclear whether the final budget will include major Medicaid spending cuts. If Medicaid funding is significantly reduced, states may struggle to afford providing the current scope of required benefits for older adults and adults with disabilities, much less optional Medicaid benefits.

Under federal law all state Medicaid programs are required to cover all older adults and adults with disabilities with the lowest income and asset levels. Optional Medicaid expansions for low-income adults under the Affordable Care Act do not apply to anyone enrolled in Medicare; there are distinct federal requirements that mandate coverage for the lowest income Medicare beneficiaries. However, there are still many optional types of Medicaid coverage for Medicare beneficiaries that states have chosen to offer. States vary in terms of whether they elect to extend Medicaid eligibility for specific programs, like coverage of long-term services, to Medicare beneficiaries with higher income levels. For example, about 20 percent of dual-eligible beneficiaries qualify for Medicaid through meeting “medically needy” criteria or special income limits, which are optional eligibility pathways. These pathways are often directed towards Medicare beneficiaries who face high out-of-pocket costs for long-term services and supports that are not covered by Medicare.

Implications For Medicaid Coverage Or Long-Term Services And Supports

Even dual-eligible beneficiaries who are guaranteed Medicaid eligibility under federal law may face substantial cuts to services that are optional for Medicaid programs to cover. Medicaid home-and-community-based services (HCBS) are perhaps at greatest risk. HCBS programs can provide an opportunity for older adults and adults with disabilities to remain in their homes, as well as enable family caregivers to continue paid employment. The level of support can range from an aide coming a couple times a week to help someone safely bathe to adult day services that provide extensive assistance with meals, medication administration, and respite for family caregivers working outside the home. Even though the Olmstead Supreme Court decision directs states to offer long-term services and supports in non-institutional settings, most HCBS programs are optional Medicaid benefits and may be candidates for elimination if Medicaid funding is reduced.

Under stimulus funding available during the pandemic, states took several steps to enhance their Medicaid HCBS programs, including increasing wages to address shortages in the number of direct care workers available to assist older adults and adults with disabilities. These stimulus funds are running out at the same time that states may be facing large Medicaid funding cuts. Multiple states had been granted approvals to spend this extra HCBS funding throughout 2025 and 2026, but these funds may be eliminated if Medicaid spending cuts are enacted.

Mechanisms For Reducing Federal Funding: Lowering The Federal Match And Block Grants

Medicaid budget cuts could be enacted by changing the process that governs how federal and state governments share Medicaid spending. Options include lowering the share of Medicaid spending covered by the federal government and switching Medicaid to a block grant system. Under the current funding approach, the federal government guarantees states that it will cover a set percentage of all its Medicaid spending. Even if the state spends more on its Medicaid program than forecasted, the federal government is committed to covering this set percentage of all Medicaid spending.

The percentage of Medicaid spending covered by the federal government—called the federal matching assistance percentage (the FMAP)—varies by state. States with the highest per-capita income are reimbursed at least 50 percent of Medicaid spending while states with lower per-capita income receive a larger share of Medicaid spending from the federal government. States are assigned one overall FMAP rate for their Medicaid spending, but the FMAP can vary by type of Medicaid spending or eligibility pathway. For example, the federal government has at times offered a higher FMAP on HCBS services through specific initiatives encouraging states to shift towards more long-term services and supports in community settings.

One way that the federal government could lower federal Medicaid spending is by lowering the FMAP. In other words, states would be responsible for funding a larger percentage of Medicaid spending. If the federal government lowered the minimum share of Medicaid spending that it funded (the FMAP “floor”) below 50 percent, then states that already have the lowest FMAP rates could be disproportionately affected. Given the high Medicaid spending levels of dual-eligible beneficiaries, even a small decrease in the share of overall Medicaid spending covered by the federal government could translate into large dollar amounts for state budgets. 

Another way that the federal government could substantially lower federal Medicaid spending is by transitioning to a block grant funding approach. Under block grants, the federal government guarantees states that it will cover a set amount of its total Medicaid spending or a set amount of Medicaid spending per enrollee for a funding period. How much this federal amount increases every year may be tied to a specific benchmark that keeps federal spending lower over time. If state Medicaid spending exceeds the block grant amount, then the federal government will not cover any unexpected increases in Medicaid spending.

Read the full article here

States Push Medicaid Work Rules, but Few Programs Help Enrollees Find Jobs

By Sam Whitehead and Phil Galewitz and Katheryn Houghton, California Healthline, April 15, 2025 

For many years, Eric Wunderlin’s health issues made it hard to find stable employment.

Struggling to manage depression and diabetes, Wunderlin worked part-time, minimum-wage retail jobs around Dayton, Ohio, making so little he said he sometimes had to choose between paying rent and buying food.

But in 2018, his CareSource Medicaid health plan offered him help getting a job. It connected him to a life coach, who helped him find full-time work with health benefits. Now, he works for a nonprofit social service agency, a job he said has given him enough financial stability to plan a European vacation next year.

“I feel like a real person and I can go do things,” said Wunderlin, 42. “I feel like I pulled myself out of that slump.”

Republicans in Congress and several states, including Ohio, Iowa, and Montana, are pushing to implement work requirements for nondisabled adults, arguing a mandate would encourage enrollees to find jobs. And for Republicans pushing to require Medicaid enrollees to work, Wunderlin’s story could be held up as evidence that government health coverage can help people find employment and, ultimately, reduce their need for public assistance.

Yet his experience is rare. Medicaid typically does not offer such help, and when states do try to help, such efforts are limited.

And opponents point out that most Medicaid recipients already have jobs and say such a mandate would only kick eligible people off Medicaid, rather than improve their economic prospects. Nearly two-thirds of Medicaid enrollees work, with most of the rest acting as caregivers, going to school, or unable to hold a job due to disability or illness, according to KFF, a health information nonprofit that includes KFF Health News, the publisher of California Healthline.

Existing efforts to help Medicaid recipients get a job have seen limited success because there’s not a lot of “room to move the needle,” said Ben Sommers, a professor of health care economics at the Harvard T.H. Chan School of Public Health. Most Medicaid enrollees already work — just not in jobs with health benefits, he said.

“The ongoing argument that some folks make is that there are a lot of people freeloading in Medicaid,” he said. “That’s just not supported by the evidence.”

Continued

Prevalence and Early Identification of Autism Spectrum Disorder Among Children Aged 4 and 8 Years — Autism and Developmental Disabilities Monitoring Network, 16 Sites, United States, 2022

Surveillance Summaries, CDC (Center for Disease Control and Prevention, April 17, 2025

Note: This is a long, research-oriented report from CDC. Since it has been referenced in the articles that follow, it is posted here first. It forms the basis of the statement that 1 in 31 American children are diagnosed with some degree of autism.

Read the full article here

A pdf of this article may be downloaded here

‘Autism Epidemic Runs Rampant,’ New Data Shows 1 in 31 Children Afflicted

Press Release, U.S. Department of Health and Human Services, April 15, 2025

Autism prevalence in the U.S. has increased from 1 in 36 children to 1 in 31, according to the Centers for Disease Control and Prevention’s (CDC) latest Autism and Developmental Disabilities Monitoring (ADDM) Network survey published today in CDC’s Morbidity and Mortality Weekly Report.

“The autism epidemic is running rampant,” said U.S. Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. “One in 31 American children born in 2014 are disabled by autism. That’s up significantly from two years earlier and nearly five times higher than when the CDC first started running autism surveys in children born in 1992. Prevalence for boys is an astounding 1 in 20 and in California it’s 1 in 12.5.”

“President Trump has tasked me with identifying the root causes of the childhood chronic disease epidemic -- including autism,” Secretary Kennedy continued. “We are assembling teams of world-class scientists to focus research on the origins of the epidemic, and we expect to begin to have answers by September.”

The new ADDM report was conducted in 2022 across 16 sites in the U.S. and surveyed children aged 8 years born in 2014. This latest autism prevalence is 4.8 times higher than in the first ADDM survey 22 years ago, when prevalence was 1 in 150 children.

The increase in autism spectrum disorder (ASD) prevalence cannot be solely attributed to the expansion of diagnoses to include higher functioning children. On the contrary, the percentage of ASD cases with higher IQs (> 85) has decreased steadily over the last six ADDM reports to 36.1% in the 2022 survey. Nearly two thirds of children with ASD in the latest survey had either severe or borderline intellectual disability (ID).

Minority children were more severely affected. Black, Asian, and Hispanic children in the 2022 survey had higher overall ASD prevalence, (3.66%, 3.82%, and 3.30%, respectively) than White children (2.77%), and were also more likely to have a more severe form of autism. Among Black, Asian, and Hispanic children, 78.9%, 66.5%, and 63.9%, respectively, had either severe or borderline ID, compared to 55.6% of Whites.

This report exposes a series of critical public health crises, including a persistent rise in ASD prevalence, an alarming escalation in case severity, and increasingly stark disparities across racial and ethnic groups. This also highlights the urgent need for real-time data.

A deeply troubling finding in the survey is that among children aged 4 years born in 2018, the overall ASD prevalence rate is 2.93% (1 in 34). Prevalence rates typically rise as children age from 4 to 8 and more cases are diagnosed. Compared to the 8-year-olds in the new report, the 4-year-olds showed wider differences by race and ethnicity. Overall prevalence among Black, Asian, and Hispanic children in this group was 3.5%, 3.11%, and 3.82%, respectively, compared to 2.04% among White children.

Continued

RFK Jr. lays out new studies on autism, shuts down 'better diagnoses' as a cause

By Cheyenne Haslett and Mary Kekatos, ABC News, April 16, 2025

On the heels of a new report showing that rates of autism diagnoses have again increased, Health and Human Services Secretary Robert F. Kennedy Jr. said he was determined to find the "environmental exposures" behind the rise and directed the National Institute of Health to launch new studies into "everything" -- from mold to obesity -- that could potentially be a factor.

Kennedy, who prioritizes autism as one of the chronic illnesses he's determined to tackle in his aim to "Make America Healthy Again," ardently pushed back against the explanation that a broadening definition of autism spectrum disorder is a meaningful contributor to more autism diagnoses.

Kennedy said he wanted to "move away" from the idea that "the autism prevalence increases -- the relentless increases -- are simply artifacts of better diagnoses, better recognition or changing diagnostic criteria."

"This epidemic denial has become a feature in the mainstream media, and it's based on an industry canard. And obviously there are people who don't want us to look at environmental exposures," Kennedy said, speaking at a press conference at the department headquarters on Wednesday in Washington, D.C.

The report Kennedy mentioned — published Tuesday by the Centers for Disease Control and Prevention — estimated that autism prevalence has increased to 1 in 31 children, which Kennedy called "shocking."

In 2020, the same report found a prevalence of 1 in 36, and over two decades ago in 2000, the rate was 1 in 150.

Experts in the field agree that the rates of diagnoses are increasing and that environmental factors could be at play — but also say most of the increase can be attributed to the expanding definition of autism, which broadened dramatically in recent decades to include subtler features of the illness, including new descriptors as recently as 2013.

Continued

WA lawmakers propose closing schools for people with disabilities

By Laurel Demkovitch, Cascade PBS, April 17, 2025

HB 1472 has sparked debate between those who support a community-based model and those who say closures will hurt current residents and state employees.

Mike Raymond doesn’t remember a lot about his time at Rainier School, a habilitation center for people with intellectual and developmental disabilities.

But he still thinks about moving heavy bricks all day, serving on a fire line, and being tied to his bed. Raymond, now 78, spent 14 years at the school. He moved out at age 20, when his sister invited him to live with her.

Since then, he’s gotten married, had a child and become a staunch advocate for closing the facility where he spent all those years.

“We’ve been fighting for a long time,” said Raymond. “Shut them down.”

This could be the year it happens. As state lawmakers are looking for ways to cut spending, some have proposed closing Rainier School, as well as Yakima Valley School, and moving residents into community settings. Rainier and Yakima Valley are two of four residential habilitation centers operated by the state Health Care Authority that serve people with developmental disabilities who live in the facilities full-time.

Currently, 58 live long-term and 15 people are receiving short-term care at Rainier School, according to a bill analysis. Another 36 live long-term at Yakima Valley School, and 13 are there receiving short-term care.

The prospect of shutting down the facilities has been met with mixed responses from lawmakers, advocates and families with current and past residents there.

Some advocates for those with disabilities and supported-living providers argue that people with developmental disabilities are better served outside of institutions, in settings like group homes where they can receive support services while still interacting with the local community.

But others say closing the schools could leave some residents and families with no support — and hundreds of state employees out of work.

The proposal

Under House Bill 1472, the Department of Social and Health Services would have to close Rainier School and Yakima Valley School by June 30, 2027. The Yakima Valley School would remain partially operational for short-term respite and crisis-stabilization beds, which the state estimates could serve about 10 clients at a time. Similarly, Senate Bill 5393 would close Rainier School but leave Yakima Valley School fully operational.

Under both proposals, no new residents would be accepted at the closing facilities, and the agency would work to relocate current residents to other facilities in the state or to community settings, like state-operated or private supported-living programs.

If the facilities close, the state estimates that about 17% of residents would transition to state-operated group homes, 17% would move to supported living settings and 66% would relocate to one of the state’s other residential habilitation centers, like Fircrest School or Lakeland Village.

Continued

Executive Directive 2025-3: Impact of Federal Medicaid Cuts

Press Release from Governor Gretchen Whitmen, April 17, 2025 

Medicaid was established 60 years ago to ensure that all Americans had access to healthcare and the dignity of a good life, but today Republicans in Congress are rushing to gut this program that provides health care for millions of Americans and Michiganders. These are our friends and neighbors – people who are battling cancer, veterans who are disabled, and children. The cuts being discussed would be the largest cuts to Medicaid in history, terminating healthcare for millions of Americans. It would force providers in Michigan to close their doors, reduce the quality of services, and strip coverage from millions of the most vulnerable Americans, including children and pregnant and postpartum women. We must understand as many specifics about the impact that terminating healthcare will have on Michiganders who get their insurance through Medicaid.

Medicaid is the largest health insurance program in the U.S., providing coverage for one in five individuals. In Michigan, the coverage rate is even higher: one in four Michiganders receive their health insurance through Medicaid. That coverage enables individuals across the state to access health care so that they can continue to live healthy, productive lives.

Jointly funded by the state and federal government, Michigan’s Medicaid program affords health coverage to over 2.6 million Michiganders each month, including:

• 1 million children;
• 300,000 people living with disabilities; and
• 168,000 seniors.

Additionally, 45% of births in Michigan are covered by Medicaid.

Healthcare coverage provides real returns. The Congressional Budget Office estimates that long-term fiscal effects of Medicaid spending on children could offset half or more of the program’s initial outlays. And Medicaid enrollment for children has been shown to increase not only positive health outcomes but also educational attainment, wages in adulthood, and future tax revenue from increased earnings for those who are covered.

Medicaid is not only critical for the health of individuals – its coverage is also essential for assuring the sustainability of hospitals, community health centers, physician practices, and nursing homes across the state. I led bipartisan efforts to expand access to Medicaid, which took effect in 2014. Since Michigan expanded Medicaid, hospital uncompensated care has fallen by more than 50%. Hospitals in Michigan receive nearly $7 billion in Medicaid funding annually, accounting for almost one-fifth of the state's hospitals' net patient revenue.

More than 70% of Michigan’s Medicaid budget comes from federal funding. Cuts to federal funding will jeopardize coverage for more than 2.6 million Michiganders and threaten Michigan’s hospitals, community health centers, and nursing homes with closure. These threats are especially acute in small towns and rural communities, where coverage rates are higher than in other parts of the state. 37.3% of small town and rural Michiganders are covered by Medicaid.

House Republicans have proposed cutting up to $880 billion from Medicaid, which could mean that Michigan loses as much as $2 billion each year. That is a 42% reduction in the share of state Medicaid spending per resident. This executive directive will enable us to better understand the impact of those cuts on Michigan.

Section 1 of article 5 of the Michigan Constitution of 1963 vests the executive power of the State of Michigan in the governor.

Section 8 of article 5 of the Michigan Constitution of 1963 places each principal department under the supervision of the governor.

Acting under the Michigan Constitution of 1963 and Michigan law, I direct the following:

Impact of Federal Medicaid Cuts

1. Within thirty days of this order, the Michigan Department of Health and Human Services (MDHHS) must review federal budget proposals and prepare a report illustrating potential scenarios related to the impact of Congress’ proposal. The report, drawing from available analyses and based upon reasonable assumptions, should delineate the specific impact of proposed cuts to Medicaid, including:
2. The number of Michiganders who could lose health care if the proposed cuts go into effect.
3. The effect of the proposed cuts on hospitals and other relevant service providers, especially in rural and other underserved communities, including reductions in services and closures of facilities.
4. The impact on timely access to care for Michiganders, such as the creation or expansion of healthcare deserts in areas of the state.
5. The ways in which reductions in federal money could impact the state’s budget, including the need for cuts to other vital services.
6. The Department of Insurance and Financial Services and the State Budget Office must provide support to MDHHS in assessing the scope and impact of the proposed cuts.
7. All state departments and agencies must coordinate and cooperate with MDHHS in executing the duties outlined by this directive.

This directive is effective immediately.

Thank you for your cooperation in its implementation.

Read the full report here

Click to view the full PDF of the executive directive.

New Mexico Governor Signs SB 535 Supported Decision-Making Act

Newsbreak, April 11, 2025

AlamogordoTownNews reports that New Mexicans with disabilities and older adults are one step closer to having greater autonomy in their decision-making after the governor signed SB 535 into law last week

SB 535, an omnibus bill addressing various public health, safety and welfare measures, includes the Supported Decision-Making Act, which will establish a new program within the Office of Guardianship dedicated towards supported decision-making agreements, an alternative to adult guardianship. The New Mexico Aging and Long-Term Services Department (ALTSD) will collaborate closely with the Office of Guardianship to connect interested New Mexicans with supported decision-making resources.

“Providing more pathways to autonomy and self-determination strengthens our communities,” said Emily Kaltenbach, ALTSD Cabinet Secretary. “This legislation will help ensure that those who need it have the necessary support to make informed decisions while maintaining their independence and dignity.”

Currently, more than half of U.S. states, including Texas, Colorado and Arizona, have adopted supported decision-making as a legal alternative to guardianship. While several other legal avenues provide a named supporter, the supported decision-making framework allows individuals to retain full decision-making authority while receiving that assistance.

Continued

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

VOR SUPPORTS:

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

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

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

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

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

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

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

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

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

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

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

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



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

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

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

VOR OPPOSES:

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