March 7, 2025

VOR's Weekly News Update

VOR is a national non-profit organization

run by families of people with I/DD and autism

for families of people with I/DD and autism.

Take Action!

Contact the Local Office of Your Members of Congress!

Your Representatives in the House, and your two Senators all have local offices. They have case workers assigned to help with problems. Though not always able to provide solutions, these offices help you interact with your members of congress and make them aware of your issues. If you are on a waiting list for services, if you are not able to access DSPs (caregivers) or the services to which you are entitled, if you are unable to receive the level of care your family member with I/DD or autism requires, let your elected officials know! They need to be aware of the problems their constituents encounter with the services they are supposed to receive.

To find your member of the House of Representatives, go to:

https://ziplook.house.gov

To find your Senators, go to:

https://www.senate.gov/states/statesmap.htm

We also encourage you to tell the offices that you want your Representatives and Senators

to

MAKE NO CUTS TO MEDICAID!

And, if you haven't already reached out:

Contact Your Governor!

Two weeks ago, we sent out snail-mail letters to the Governors of all 50 states, asking to protect the people of their state by speaking with their Members of Congress and asking them to oppose the proposed

$880 Billion cuts to Medicaid.

Please click here to download VOR's Letter

If these cuts are enacted, governors will be the ones to bear the initial burden. Their state budgets, already strapped for funds for Medicaid services, will be severely reduced. Hospitals will become overcrowded. Many will be forced to close through lack of funds.

And we all know what will happen to DD Services...

We need you to join us, by reaching out to your governor's office to tell your story, and to tell how cutting Medicaid would affect your family, and your loved ones and your state.

Your governor's contact can be found here

Once on their website, look for information on how to contact them. It may be a phone number, or an email address, but most likely there will be an online form to fill out. You may or may not be able to attach VOR's letter, but feel free to use it as a guide to writing your own letter.

But please, reach out to your state office, and to the providers and administrators of the residential facilities that provide services for your loved ones, and ask them to speak to your governors, your members of the House of Representatives and Senate to demand that Congress

MAKE NO CUTS TO MEDICAID!

March is

Developmental Disabilities Awareness Month

Are your members of Congress aware of that?

Please join us on Capitol Hill

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

Please register early, to reserve your spot

Registration is free until March 15, 2025

So please register now!

To register for the Legislative Initiative,

Please Click Here

Unable to join us in D.C. this year?

You can still help by becoming a sponsor!

We are still far short of our goal for sponsorships

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.

Please help us help.

Diamond - $ 5,000

Platinum - $ 2,500

Gold - $1,000

Silver - $ 500

Bronze - $ 250

Advocacy Hero - $ 100

Friends & Families - (Other amounts)

Any and all gifts are welcome

This week, the budget resolution process begins in earnest....

Republicans can't meet their own budget target without cutting Medicare or Medicaid, Congressional Budget Office says

The House GOP has ordered the Energy and Commerce Committee, which oversees Medicare and Medicaid funding, to cut $880 billion in a bill to advance Trump's agenda.

By Sahil Kapur, NBC News, March 5, 2025

House Republicans can’t meet their own budget target that is necessary to pass President Donald Trump’s legislative agenda without making significant cuts to Medicare or Medicaid, the official budget scorekeeper confirmed Wednesday.

House Republicans adopted a budget blueprint last week that opens the door to pass Trump’s policy priorities on immigration, energy and taxes. It instructs the House Energy and Commerce Committee to cut spending under its jurisdiction by $880 billion.

The Congressional Budget Office, a nonpartisan in-house think tank that referees the process, said that when Medicare is set aside, the total funding under the committee’s jurisdiction is $8.8 trillion over 10 years. Medicaid accounts for $8.2 trillion of that, or 93%.

When Medicare and Medicaid are excluded, the committee oversees a total of $581 billion in spending — much less than the $880 billion target — the CBO said. The letter outlining the figures was in response to a query by Reps. Frank Pallone, D-N.J., the ranking member of the Energy and Commerce Committee, and Brendan Boyle, D-Pa. the ranking member of the Budget Committee.

That leaves Republicans in a deep predicament. The budget resolution, adopted by the slimmest of margins in the narrowly divided House, was the delicate product of negotiations among conservative hard-liners who demand steep spending cuts and swing-district GOP lawmakers who say they don’t want to slash funding for the health programs their constituents rely on.

Revising the target would mean upsetting one of those factions and potentially risking the support of key votes to pass the eventual budget reconciliation bill that advances Trump’s agenda.

“This letter from CBO confirms what we’ve been saying all along: the math doesn’t work without devastating Medicaid cuts,” Pallone said Wednesday in a statement. “Republicans know their spin is a lie, and the truth is they have no problem taking health care away from millions of Americans so that the rich can get richer and pay less in taxes than they already do.” 

Read the full article here

Download the CBO Report here

related article...

GOP budget goals impossible without Medicare and Medicaid cuts, budget office says

By Nina Lakhani, The Guardian, March 6, 2025

Republicans cannot reach their budget goal of slashing at least $1.5tn in spending over the next decade to fund Donald Trump’s tax cuts and immigration crackdown without cutting healthcare relied upon by tens of millions of Americans – including seniors and children, according to the non-partisan budget assessor.

House Republicans last week narrowly passed a budget instructing the energy and commerce committee, which is responsible for federal healthcare, to cut spending under its jurisdiction by $880bn – in order to pay for Trump’s tax cuts, mass deportations and defence investments.

The House speaker, Mike Johnson, insists that the spending purge can be achieved by rooting out waste, fraud and tightening eligibility requirements, and that healthcare is safe in Republican hands.

But the numbers do not add up, according to the Congressional Budget Office (CBO) on Wednesday.

The independent in-house agency confirmed that it would be impossible to reduce spending by $880bn without cuts to Medicare, Medicaid or the Children’s Health Insurance Program (Chip). That’s because after excluding Medicare, Medicaid and Chip, the committee oversees only $381bn in spending – much less than the $880bn target – the CBO said.

Trump and his Republican party want to extend the soon-to-expire 2017 tax cut law – which would cost nearly $5tn – while also spending hundreds of billions of dollars on their so-called “America first” agenda. To do so without further increasing the national debt, Republicans are looking to slash spending on existing programs.

Medicaid covers around 70 million low-income people, or one in five Americans, while Medicare provides health coverage for 66 million seniors over the age of 65. Chip is designed to cover uninsured children in families that don’t qualify for Medicaid.

But the CBO assessment, which was requested by Democratic congressman Frank Pallone, the ranking member of the energy and commerce committee, and Brendan Boyle, ranking member of the budget committee, makes clear that the unprecedented spending cuts will be impossible without dismantling the social safety net programs relied upon by large numbers of Americans in every district – Republican and Democratic – across the country.

Read the full article here

Download the CBO Report here

Republicans once maligned Medicaid. Now some see a program too big to touch

By Amanda Seitz, Associated Press, March 2, 2025

Every time a baby is born in Louisiana, where Republican House Speaker Mike Johnson handily won reelection last year, there’s more than a 60% chance taxpayers will finance the birth through Medicaid.

In Republican Rep. David Valadao ’s central California district, 6 out of 10 people use Medicaid to pay for doctor visits and emergency room trips.

And one-third of the population is covered by Medicaid in GOP Sen. Lisa Murkowski’s Alaska, one of the nation’s costliest corners for health care.

Each of these Republicans — and some of their conservative colleagues — lined up last week to defend Medicaid, in a departure from long-held GOP policies. Republicans, who already have ruled out massive cuts to Social Security and Medicare, are turning their attention to siphoning as much as $880 billion from Medicaid over the next decade to help finance $4.5 trillion in tax cuts.

But as a deadline to avoid a partial government shutdown nears, hesitation is surfacing among Washington’s Republican lawmakers — once reliable critics of lofty government social welfare programs such as Medicaid — who say that deep cuts to the health care program could prove too untenable for people back home. 

“I’ve heard from countless constituents who tell me the only way they can afford health care is through programs like Medicaid,” Valadao said on the House floor. “And I will not support a final reconciliation bill that risks leaving them behind.”

States and the federal government jointly pay for Medicaid, which offers nearly-free health care coverage for roughly 80 million poor and disabled Americans, including millions of children. It cost $880 billion to operate in 2023.

Johnson has ruled out two of the biggest potential cuts: paying fixed, shrunken rates to states for care and changing the calculation for the share of federal dollars that each state receives for Medicaid. Just a few years ago, Johnson spearheaded a report that lobbied for some of those changes during the first Trump administration.

Johnson insisted in a CNN interview that the focus will instead be ferreting out “fraud, waste and abuse” in Medicaid, although it’s unlikely to deliver the savings Republicans seek.

GOP pressure over Medicaid is mounting, with some state party leaders joining the calls to preserve the program. States are already struggling with the growing cost of sicker patients and could be left to cover more if the federal government pulls back. In some states, the federal government picks up over 80%.

More than a dozen Minnesota GOP lawmakers wrote the president recently warning that “too deep of a cut is unmanageable in any instance.” Gov. Joe Lombardo, R-Nev., told Congress in a letter that “proposed reductions would put lives at risk.” In Alaska, state Senate Majority Leader Cathy Giessel, a Republican and nurse, cited “huge concerns” during a floor speech.

Nationally, 55% of Americans said the government spends too little on Medicaid, according to a January poll from The Associated Press-NORC Center for Public Affairs Research.

“It’s now a very popular program that touches a very broad cross-section of American society,” said Drew Altman, president of the health care research firm KFF. “Roughly half of the American people say that they or a family member have at one time been served by the program.”

Significant changes to Medicaid are still on the table. They have to be for Republicans get the savings they need to pay for tax cuts. 

Read the full article here

Federal Medicaid cuts could cost states additional $1.1 trillion over next decade: analysis   

By Kathleen Steele Gaivin, McKnights Senior Living, March 3, 2025

If the federal government cuts the amount of spending per person enrolled in Medicaid, the burden passed on to the states over the next decade would be $700 billion to $1.1 trillion, according to a new analysis prepared by the Urban Institute with the support of the Robert Wood Johnson Foundation.

States would need to increase spending by almost 40% to make up for proposed cuts, according to the analysis.

“States will need to either raise additional revenue through taxes, cut spending for other programs like education, cut payment rates for Medicaid providers, or reduce benefits for Medicaid enrollees,” the authors noted. One area that could see cuts could be home- and community-based services, they said.

As the House of Representatives is considered making substantial federal funding cuts to Medicaid over the next 10 years, “per capita caps would have the largest effect on federal spending,” according to the analysis.

The report also looked at the cost-shifting of eliminating financial support provided to states that expanded eligibility for their Medicaid programs, also known as the enhanced Federal Medical Assistance Percentage, or FMAP. 

“If per capita caps are put in place but the enhanced FMAP continues, federal spending would decrease by $700 billion to $1.1 trillion over the next 10 years. If there are no per capita caps but the FMAP ends, federal spending would decrease by $563 billion over the next 10 years,” the researchers said.

States with lower average incomes, such as Arkansas, Kentucky, Louisiana, Mississippi, New Mexico and West Virginia, would be most affected by those decreases in federal Medicaid funding, according to the analysis.

“This proposed policy amounts to a wholesale transfer of financial responsibility to states, because the need for healthcare will not change, just the means to pay for it,” Kathy Hempstead, senior policy adviser at the Robert Wood Johnson Foundation, said in a press release issued in conjunction with the report. “The consequences will be most drastic in our poorest states, which will be very hard-pressed to close this massive funding gap.”

Continued

In recent weeks, we have seen sweeping changes in staffing and policy at several of the federal agencies that our families rely upon for the well-being of their loved ones with I/DD and autism. Staff reductions, often based on ideology and anti-DEI policies, have been made at many of these agencies.

One examples that bears notice would be the cuts at CMS, as the administration intends to target waste, abuse and fraud in the agency. In order to uncover where the waste and fraud exist, the agency would require more staff, not less.

Another example would be the Department of Education's new Secretary, Linda McMahon's dismantling of the Department of Education, moving the administration of special education programs under IDEA to HHS and its Office of Civil Rights to the Department of Justice, as both of those agencies are undergoing significant staffing reductions.

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Inside NIH Resignations; CDC Censorship Tensions; Firings Disrupt CMS

By Rachael Robertson, MedPage Today, March 5, 2025

Inside NIH Resignations

Despite federal judges' orders to halt the Trump administration's federal funding freeze, the NIH has awarded few grants, disregarding the advice of its own lawyers -- and apparently prompting departures, according to The Atlantic.

HHS officials have pressed the NIH to continue the pause on grants, and NIH acting director Matthew Memoli, MD, has toed the party line, according to the article, which was based on interviews with nearly a dozen current and former NIH officials. The grant management officers who usually sign off on awards are afraid to do so, lest they lose their jobs.

The fight over funding has led to the departures of top NIH officials. On Feb. 10, after the urging of top HHS lawyers to resume payments, Michael Lauer, MD, the chief of NIH's extramural research division, issued a memo to resume funding grants -- only to subsequently resign. That same week, former NIH deputy director Lawrence Tabak, DDS, PhD, announced he was retiring, instead of being forced into a demotion.

The departures "left many at the agency shocked and unmoored," the article stated, citing employees' concerns that if two high-ranking officials were forced out, no positions were safe. "We're all still terrified for our jobs," one current official told The Atlantic. "No one knows who they can trust."

CDC Censorship Tensions

The Trump administration's attack on diversity and equity initiatives are generating contention within health agencies, with the latest dustup due to potentially banned words in performance reviews at the CDC, according to reporting in the New York Times.

Last week, CDC employees received an email instructing them to avoid using a dozen "key words" -- including health equity, race, bias, disparity, culturally appropriate, and stereotype -- in annual reviews, according to the article.

[E]mployees are worried about how Trump's crackdown on diversity, equity, and inclusion initiatives will impact the agency's work on narrowing health disparities.

"Every public health student recognizes in the first year of school that race is a determinative factor of health status," David Rosner, PhD, MPH, of Columbia University, told the Times. "Being poor isn't good, but being Black and poor is terrible -- that's what you learn. You can't address public health without being aware of that."

Firings Disrupt CMS

Recent firings at CMS are tanking employee morale and disrupting the workflow of the machine behind Medicare and Medicaid, STAT reported.

CMS leaders still aren't sure exactly how many employees were fired during the first round of cuts by the Trump administration, but they estimate that they lost 5% of their workforce. And these cuts don't seem to be methodological, the article stated.

Two divisions within CMS have been hit especially hard: the Center for Medicare and Medicaid Innovation and the Center for Consumer Information and Insurance Oversight -- the latter of which was estimated to have lost 15% of its staff. These divisions figure out ways to pay for and care for older and lower-income people and oversee ACA plans.

While Trump has pledged not to touch Medicare or Medicaid, the article stated that further disruption at CMS risks "undermining that pledge. And if they start to impair how the agency sets payments and regulations, experts said the ripple effects to business operations could be felt across insurers, hospitals, and other providers."

Read the full article here

Health agency morale wanes amid mass firings

By Kelly Hooper and Chelsea Cirruzzo, Politico, March 4, 2025

‘EXPECTING THE WORST’ — Mass firings across federal health agencies have racked workers who’ve held onto their jobs at the Centers for Medicare and Medicaid Services, an agency official who retired last week told Kelly.

Jeff Grant, the former deputy director for operations of the CMS division that oversees Obamacare and other programs, left Friday after a 41-year career in the federal government. He described an agency in wreckage after Elon Musk’s Department of Government Efficiency swept through HHS and fired thousands of workers it deemed unfit for the agency’s needs or inadequate to perform their job’s duties.

Shortly after his retirement became official Friday, Grant sent a fiery open letter to the HHS leader tasked with carrying out the firings, decrying the layoffs as unlawful and disputing the pink slips that 82 of his former employees — about 15 percent of his workforce — received a few weeks ago.

On Monday, Grant launched a consulting firm that will focus on finding new jobs for the fired CMS employees. Grant and other agency employees have said the Trump administration has been indiscriminate in its firings — cutting people who worked on initiatives that advance some of Trump’s policy priorities, like the surprise billing ban he signed into law in his first term.

Here’s some of Kelly’s conversation with Grant, edited for length and clarity:

What was morale like at CMS in the aftermath of these firings?

The first day back [after the firings] was the worst day I’ve ever spent in Bethesda [the Center for Consumer Information and Insurance Oversight headquarters], bar none. This just hit everybody. Everybody just was feeling pretty gut-punched. It was horrible.

Once this had happened, I was much more open about the fact of what I was leaving to do, and that I would be taking care of people. And people saw me already connecting people with jobs in my spare time when I was still working for CMS.

How would you describe the state of the agency when you left on Friday?

Overall, morale is down. There’s a feeling, that is a justifiable feeling, that we’re not done yet. We are still awaiting to see what the effect of the reorganization will be. CMS has been massively understaffed for years, so getting rid of these people is a huge slam to CMS. Getting rid of more would be devastating. Pretty much every senior leader in CMS feels that way about it.

They’ve been punched really hard, and then they’re looking ahead and think that there’s a lot more to come, and it’s of unknown scope. The climate is one of expecting the worst now because they’ve seen the worst.

Continued

What Social Security Shake-Up Could Mean For People With Disabilities

By Michelle Diament, Disability Scoop, March 3, 2025

The Trump administration is planning to slash jobs and make major changes at the federal agency responsible for administering Social Security and Supplemental Security Income benefits to millions of Americans with disabilities.

The Social Security Administration said late last week that it “will soon implement agency-wide organizational restructuring that will include significant workforce reductions.”

The agency indicated that it’s planning to shrink its workforce to 50,000, down from 57,000 employees.

“Through these massive reorganizations, offices that perform functions not mandated by statute may be prioritized for reduction-in-force actions that could include abolishment of organizations and positions, directed reassignments, and reductions in staffing,” the Social Security Administration said in a message to its employees. “The agency may reassign employees from non-mission critical positions to mission critical direct service positions.”

Employees are being given the option to say that they are interested in being reassigned or choose to retire or resign.

Currently, Social Security has a regional structure with 10 offices, which the agency said will be reduced to four regions. Changes are also expected at the agency’s headquarters. The agency described its workforce as “bloated” and officials said they expect that much of the staff reductions will come from employees electing to leave.

The move is part of a broader effort by Elon Musk’s Department of Government Efficiency to cut the size of the federal workforce.

More than 73 million Americans receive Social Security, SSI or both each month, including over 11 million people with disabilities. Advocates say they don’t see how the agency could cut thousands from its payroll without compromising services.

“For many people with disabilities, Social Security is the difference between making rent or being evicted, between having enough food to get through the week or going hungry, and between having enough gas in the tank to get to the doctor or missing an appointment,” said Darcy Milburn, director of Social Security and health care policy at The Arc of the United States. “The SSA is already running on fumes with its lowest staffing levels in 50 years. I am deeply concerned that the scale of the proposed staffing cuts and the upheaval that is happening right now at SSA could devastate Social Security programs and put the lives of millions of Americans with disabilities at risk.”

Read the full article here

Trump Education Secretary Confirmed Despite Special Ed Concerns

By Michelle Diament, Disability Scoop, March 5, 2025

The nation has a new secretary of education and she’s angling to free her department from its special education obligations.

The U.S. Senate voted 51 to 45 along party lines this week to confirm Linda McMahon to lead the Department of Education.

The move comes despite opposition from many disability advocates concerned by McMahon’s limited knowledge of the Individuals with Disabilities Education Act and her plans for the special education program.

During confirmation hearings, the former WWE executive was short on specifics when asked what IDEA promises students with disabilities and she repeatedly suggested to senators that oversight of the program should no longer be housed within the Education Department.

“Special education, I think it very well could go back to HHS where it started,” McMahon said, referencing the Department of Health and Human Services.

In addition, McMahon proposed moving the Education Department’s Office for Civil Rights, which handles complaints of disability discrimination in schools, to the Justice Department.

Continued

How Students With Disabilities Will Suffer if the Department of Education is Closed      

By Eli Smolen, EdTrust, March 3, 2025

I didn’t always plan to be an educator working with students with disabilities. Instead of spending years studying to be a teacher and earning an undergraduate degree in the field, I pursued an alternative certification program. After only a few weeks of training and no experience with students with disabilities, I was given a caseload of a dozen students with individualized education plans (IEPs).

There’s Already a Teacher Shortage

Systemic failures and a historic lack of investment has caused a teacher shortage and led to the need for alternative certification programs like mine. I came to realize schools are desperate, and I was told an inexperienced teacher is better than no teacher at all.

My caseload included students with autism and other developmental disabilities, such as dyslexia, attention deficit hyperactive disorder (ADHD), and emotional impairment disorders. While I was able to complete my master’s in education concurrently and ensured my students received the mandated services, my students deserved more than I was able to provide.

My path to becoming an educator and my experience in the classroom highlights the need for leadership at the federal level. As a former special education teacher, I know that dismantling the Department of Education will exacerbate the teacher shortage and will jeopardize the resources and supports students with disabilities need.

Put simply, I know we need more teachers because I was in a school that struggled to put a teacher in every classroom. I know we need more funding for students with disabilities because my students were falling behind. I know we need accountability and oversight because I worked with families that have gone from school to school looking to receive the services their students deserve.

But these priorities, high-quality teachers, well-resourced classrooms, and accountable schools, clearly do not align with the administration’s effort to gut the Department of Education.

Instead of investing in our most underserved students, the administration callously suggests that crucial statutorily required programs be shifted to other agencies. The Individuals with Disabilities Education Act (IDEA), which directly supports students with disabilities, as well as Title I funding for low-income schools, and the Office for Civil Rights (OCR), which safeguards students from discrimination, are all at risk. Moving these programs to other agencies without the necessary staff, resources, or expertise would harm our students with disabilities.

Our nation’s students deserve better. In fact, IDEA acknowledges the need for more investment and recommends Congress contribute 40% of the average per pupil expenditures for students with disabilities. Instead, Congress has consistently provided less than 15%.

Continued

Children with disabilities swept up in DEI fight, advocates say 

By Lexi Lonas Cochran, The Hill, February 28, 2025

Children with disabilities are getting swept up in the Trump administration’s crusade against diversity, equity and inclusion (DEI) and its push to end the Education Department, advocates say. 

So far, the Department of Government Efficiency’s (DOGE) biggest contract canceled at the Department of Education involved analyzing programs for students with disabilities, and the same DEI programs President Trump is seeking to outlaw often provide accommodations for disabled students. 

DEI is also sometimes presented as DEIA, with the last letter standing for accessibility.

“The whole reason students with disabilities are able to be in the classroom and get access to an equitable education is because of DEIA efforts,” said Robyn Linscott, director of education and family policy at the Arc of the United States, an advocacy group for individuals with disabilities. 

“IDEA [the Individual with Disabilities in Education Act] says that students with disabilities have the right to be in an inclusive classroom to the greatest extent possible,” Linscott added, calling it “the heart” of the landmark legislation.

The latest information given by DOGE shows one of the biggest contracts cancelled at the Education Department was with the American Institutes for Research (AIR) and focused on “effectiveness of transition supports for youth with disabilities served under the Individuals with Disabilities Education Act.” 

AIR told The Hill their group is currently evaluating the Chart My Path for Future Success program that was created to help students with disabilities prepare for future employment and independent living after high school.

A lot of the money awarded to this contract went to training staff to implement initiatives that affect more than 1,000 students with disabilities, according to the organization. Districts have lost funding for the 61 positions created to support the programs.

The “first and only study of its kind” study AIR was conducting was intended to see how successful these students were post-high school, hoping to give more information on how to effectively transition students with disabilities to the workforce and higher education.

The Education Department has also ended $600 million in “divisive” teaching training grants that they say targeted DEI, critical race theory and other “woke” concepts. 

“We have had a lot of teachers reaching out to us feeling very afraid because there’s already a huge teacher shortage in their district, especially for teachers of students with disabilities, and what would all of these cuts mean?” Linscott said.  

Continued

Louisiana families brace for potential Medicaid cuts. 'Incredibly difficult.'     

By Emily Woodruff, The Advocate, March 1, 2025

The diagnoses for Hailey Bowen’s 12-year-old son came one after another.

First, it was severe ADHD. Then autism. Related challenges followed, including difficulties with mood regulation and anxiety.

Despite it all, he recently transitioned from a special needs school to general education, helped with a Medicaid-funded one-on-one aide. He’s earning good grades and learning to socialize, said Bowen, a landscape architect in New Orleans. She imagines a day when he won't need the aide, and can use the coping skills he's learning at school to get a job as an adult. 

But with potential federal cuts to Medicaid looming, Bowen and her husband, a teacher, fear their son's progress could unravel if he's no longer eligible and can't continue to have an aide. She credits the one-on-one attention as the reason he’s able to join mainstream education.

“We didn’t think this was possible,” she said. “And the only reason it is possible is because they are with him 35 hours a week.”

Finding $880 billion

Uncertainty is growing among Louisiana’s many families who rely on Medicaid for health insurance. The federal government is considering how to cut hundreds of billions of dollars from the budget after the House passed a resolution ushered through by Speaker Mike Johnson, a Louisiana Republican.

While the resolution, aimed at extending tax cuts, does not explicitly mention Medicaid, it instructs the House Energy and Commerce Committee — which oversees the program — to cut $880 billion in spending over the next decade. 

In interviews this week, Johnson said that cutting large programs within Medicaid was not on the table, and that he was looking at "finding efficiencies in every program, not cutting benefits for people who rightly deserve them." 

'Incredibly difficult' 

Medicaid covers 1 in 3 Louisiana residents, the second-highest rate in the U.S. More than half of the state's children receive health insurance through the program, and nearly two-thirds of births are covered by it. It also funds services for people with disabilities and supplements Medicare for low-income seniors.

Families in Louisiana who have come to rely on the coverage said they worry that if Congress makes changes to the program, a lifeline could be cut. 

Claire Tibbets, executive director at the Autism Society of Greater New Orleans, and her husband, who works in shipping and receiving at the Ernest N. Morial Convention Center, pay over $500 per month for private insurance. But their 7-year-old daughter is covered through LaCHIP, Louisiana’s Medicaid program for children; adding her to their private plan would be financially impossible, she said.

Medicaid also covered their daughter’s monthlong NICU stay when she was born prematurely. “I don’t even know how we would have paid for that, honestly,” she said.

Madeleine Brisco, a nonprofit fundraiser, spent months securing Medicaid coverage for her 9-year-old daughter under TEFRA, a program that helps disabled children whose parents earn too much for Medicaid but face overwhelming medical costs. Her daughter has epilepsy and autism, requiring frequent therapy, neurological imaging, and emergency care for seizures.

Before TEFRA, Brisco’s family paid all of their $7,500 deductible within months of the start of each year, leaving little room to save for other expenses. Calling it a “financial gamechanger,” she fears TEFRA could be among the first programs cut.

Christina Martin, an advocacy leader for Louisiana Developmental Disability Council's Advocacy Network, relies on Medicaid for herself, her daughter, who has a rare chromosome disorder and autism, and her father, a 56-year-old liver transplant patient.

“It's not just a number on a spreadsheet,” Martin said. “It's our kids' lifeline.”

Read the full article here

What could possible Medicaid cuts mean for Massachusetts residents with disabilities?

By Louisa Moller, WBZ News (CBS), March 6, 2025

Massachusetts families are speaking out against the Trump administration, saying its policies will harm those living with disabilities.

Hundreds of Massachusetts families of individuals with intellectual and developmental disabilities met at the State House Thursday for their annual legislative reception and, this year, uncertainty hangs over their agenda.   

"Families like mine and countless others will face impossible situations," said Lancaster resident Peter Wyman, who has four adopted adult sons with special needs. "That would decimate us, economically."

Possible Medicaid cuts

Advocates said people with disabilities are in a tough spot. Already, thousands of people wait for services amid a workforce shortage in the human service sector, according to the Arc Of Massachusetts. On top of that, Republicans in Congress are weighing whether to cut Medicaid in order to fund President Donald Trump's "big, beautiful bill" with $4.5 trillion in tax breaks and $2 trillion in spending cuts. Medicaid is not mentioned in the bill, but the Congressional Budget Office found that the House GOP could not reach its plan without cutting Medicaid.

Wyman said any cut to his Medicaid services would be devastating.

"Medicaid pays for 1,200 diapers a month and I run out," said Wyman. "They pay for 500 cans of Ensure and Pediasure a month and I run out."

What could Medicaid cuts mean?

The Arc of Massachusetts reports that 1.6 million middle and low-income Massachusetts residents use Medicaid health care services. About 500,000 of them are people with disabilities and older adults.

Then there's President Trump's immigration policies. Immigrants make up much of the human services workforce who take care of families like Wyman's.

"We know some of them may be leaving because maybe family members have to go," said Maura Sullivan, the CEO of the Arc of Massachusetts. "Or they're not comfortable here anymore and it's scary to live here."

Sullivan said all of this uncertainty comes at a time when resources for people with disabilities are already scarce.

"We still have thousands of people without services, so we've got to hire more workforce," said Sullivan.

Gov. Maura Healey's proposed budget keeps spending level for most programs for people with disabilities but reduces one line item by 11% which provides resources for young adults with disabilities who turn 22 and age out of the school system.

Continued

Dozens of Oklahoma hospitals are at risk. Managed Medicaid has kept them afloat

By Addison Koliewer, KOCO News (ABC), March 6, 2025

Data shows 23 rural hospitals in Oklahoma are at immediate risk of closing, according to a report by the Center for Healthcare Quality and Payment Reform. 

Norman Regional Health System had $328 million of outstanding debt last June, according to a report from Moody's. That debt contributed to the hospital's bond rating, also known as the financial snapshot of a hospital, being lowered several times since 2021.

Now, the hospital system announced it is exploring new ways to serve the community.

"To ensure the people of Norman and our region have access to hospital services, we are interested in the possibility of partnering with another, compatible health system. Our team is also exploring remaining an independent organization. Both these options will receive careful consideration and thought from our board of trustees," Melissa Herron, a Norman Regional spokesperson, said in a statement.

But Norman Regional isn't alone.

KOCO 5 identified at least 47 hospitals in Oklahoma that have operated with negative margins from 2022 to 2024. Many of those are rural hospitals. 

"Rural hospitals all across this nation have continued to close over the last few decades. Here, just most recently in Oklahoma, we’ve had a couple of closures," said Rich Rasmussen, president and CEO of the Oklahoma Hospital Association.

Valley Community Hospital in Pauls Valley closed in January. This was the second time the hospital shut its doors since 2018.

The hospital did not return KOCO 5's request for an interview, but the Pauls Valley Democrat reported that the closure was due to monthly shortfalls that were into the six-figure range.

"What we don’t want to have in our state is we don’t want to find ourselves in a position where we lose a small hospital in one of our small towns, and that town becomes a paper town," Rasmussen said.

But data shows 60% of rural hospitals in Oklahoma are at risk of closing, and 23 of those facilities are at immediate risk, according to a report by the Center for Healthcare Quality and Payment Reform. 

"Rural hospitals all across this nation have continued to close over the last few decades. Here, just most recently in Oklahoma, we’ve had a couple of closures," said Rich Rasmussen, president and CEO of the Oklahoma Hospital Association.

Valley Community Hospital in Pauls Valley closed in January. This was the second time the hospital shut its doors since 2018.

The hospital did not return KOCO 5's request for an interview, but the Pauls Valley Democrat reported that the closure was due to monthly shortfalls that were into the six-figure range.

"What we don’t want to have in our state is we don’t want to find ourselves in a position where we lose a small hospital in one of our small towns, and that town becomes a paper town," Rasmussen said.

But data shows 60% of rural hospitals in Oklahoma are at risk of closing, and 23 of those facilities are at immediate risk, according to a report by the Center for Healthcare Quality and Payment Reform. 

He said it is managed Medicaid that has allowed these hospitals to stay open. Without it, many would be forced to close their doors.

"They allow the hospital to be reimbursed at a level that is closer to what private health insurance pays, and that is done through a federal government and the state government sharing part of that cost," Rasmussen said.

But keeping hospitals afloat could come with challenges if Congress chooses to slash Medicaid expansion.

"In Oklahoma, as an example, this would have an impact of $1.6 billion annually if Medicaid expansion, and for us that’s SoonerSelect, if it were not to be funded by the federal government," Rasmussen said. "So, if a hospital had to make the types of cuts that would balance out the reduction in revenues, we could see as much as 26,000 employees lose their jobs."

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Illinois - People with developmental disabilities can wait years for community placements, state records show  

By Olivia Olander, The Chicago Tribune, March 3, 2025

Aaron Bass likes some things about Shapiro Developmental Center, a home he shares with some 500 others on a site along the Kankakee River that first housed Illinois residents with disabilities nearly 150 years ago.

He enjoys spending time outdoors, playing bingo and supervised outings to Burger King, the dollar store or local library to check out scary movies. But Bass, a 39-year-old who has a moderate intellectual disability, said he is seeking something greater.

“I want to see what it looks like … freedom,” he said in an interview at the Kankakee Public Library, about a mile from the sprawling Shapiro campus.

Bass is one of hundreds of people living in state-operated developmental centers who have requested a move, typically to smaller group homes in community settings that offer greater independence.

While advocates credit Gov. JB Pritzker with putting a higher level of attention on the issue, the fights for placement in many cases underscore the state’s ongoing struggle to provide options for people with complex needs.

In January, a watchdog group found there were “concerning barriers” for people trying to transfer out of Choate Developmental Center in downstate Anna, almost two years after the Pritzker administration initiated plans to move out roughly half of Choate’s residents following years of reported resident abuse that led to more than a dozen criminal charges against employees. 

But Choate isn’t the only state-operated developmental center that some residents are trying to exit. 

Across Illinois’ seven state-operated developmental centers for people with developmental disabilities and medical or behavioral needs — known as SODCs — more than 200 residents were seeking placement elsewhere as of last month, close to 15% of the total population in those centers, according to records from the Illinois Department of Human Services. 

Of those, more than 125 had been on a waiting list for at least a year, records showed. That includes Bass, who has been awaiting placement for almost three years, according to his guardian. 

Illinois has a troubled track record of transitioning residents to group homes, and supply remains low.

At the same time, many people living in large, state-run institutions have high needs and are accustomed to the setting after living there for decades. And the number living in those environments is far smaller than the population of residents in smaller settings across the state.

The state has an impetus to help those who want to leave its SODCs. In 2011, Illinois fell under a consent decree to ensure it establishes a process for people living in the state facilities to have the opportunity to move to a community-based group home. The consent decree was an offshoot of a 2005 lawsuit filed on behalf of people with developmental disabilities who sought placement in community-based facilities.

And Pritzker has shown a strong interest in getting the state in compliance, some advocates said.

Pritzker’s latest budget proposal, released last week, includes some sweeteners for community providers including a proposed wage increase for their workers. At the same time, it continues a pattern of allocating slightly more funding each year to SODCs, whose populations have stayed relatively flat.

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Idaho House Republicans pass bill for Medicaid work requirements, managed care

By Kyle Pfannenstiel, Idaho Capital Sun, March 6, 2025

The Idaho House — with support from every Republican House lawmaker — on Thursday widely passed a bill that proposes sweeping policy changes intended to cut Medicaid costs. 

House Bill 345 calls for Idaho to seek work requirements for able-bodied Idahoans on Medicaid, and to give Idahoans eligible for Medicaid expansion access to tax credits to buy insurance on Idaho’s health care exchange.

“In many ways, I believe this is a broader bill that addresses the entire $5.2 billion Medicaid budget, and creates very good savings and sustainability for our state,” said Rep. Jordan Redman, R-Coeur d’Alene, who is cosponsoring the bill along with the chairs of the Idaho Legislature’s health committees. 

The $5.2 billion figure Redman referenced appears to be the total, potential budget for Idaho Medicaid for fiscal year 2026 that Gov. Brad Little requested. But the program is mostly federally funded. Next fiscal year, Idaho would pay $1.8 billion for the program, under the governor’s budget request. 

All nine House Democrats opposed the bill. The Idaho House debated it for less than 10 minutes Thursday. 

The bill’s proposal for Medicaid work requirements — which requires federal approval to implement — has drawn the most opposition. 

Medicaid work requirements are effectively just red tape, opponents say

Some advocates say Medicaid work requirements are costly and are effectively just administrative barriers to access the program — since almost half of Idahoans on Medicaid are already working. And many other Idahoans on Medicaid, advocates say, would be exempt from work requirements under exceptions the bill spells out, such as for parents of children age six and under, people with disabilities, college students, volunteers and caretakers. 

Idaho House Minority Leader Ilana Rubel, D-Boise, said the bill proposes Medicaid work requirements that “essentially mirror” what Arkansas had.

In the first seven months of Arkansas’ Medicaid work requirement, one in four people subject to the rule lost coverage, the Center for Budget and Policy Priorities found. Rubel said 95% of them were working, “but the reporting requirements were so stringent that the paperwork tripped them up. And they ended up being kicked off.”

“This is not about requiring people to work. It’s about requiring people to navigate very extensive paperwork proving it,” she argued, adding that people removed from Medicaid would show up to hospitals uninsured. 

A majority of people enrolled in Medicaid are already working, data published by health policy research group KFF show. Some research finds Medicaid work requirements waste time and resources.

About 48% of the roughly 102,000 able-bodied Idahoans on Medicaid are working, according to figures by the Idaho Department of Health and Welfare. 

Georgia’s Medicaid work requirement has cost almost $87 million, new investigation finds

Other states’ experiences and a federal watchdog report suggests costs for Medicaid work requirements, alone, are high.

Georgia is the only state that has Medicaid work requirements. One of 10 states that hasn’t expanded Medicaid, Georgia prevailed in litigation against the Biden administration for revoking its work requirements approval. 

But by the end of 2024, Georgia’s program “has cost federal and state taxpayers more than $86.9 million” and enrolled just 6,500 new Medicaid participants, far under the state’s goal, a recent investigation by ProPublica found.

In a 2019 report studying Medicaid work requirement implementation in six states, the U.S. Government Accountability Office estimated implementing work requirements costs ranged from $6.1 million to $271.6 million.

For the state of Arkansas, which had almost 26,000 more Medicaid expansion enrollees than Idaho currently has, implementing work requirements cost an estimated $26.1 million, the watchdog agency found.

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New Jersey - Resident Attends Trump’s Address To Congress

By Staff, MyVeronaNJ .com, March 6, 2025

Ask Cathy Tamburello to describe her son Michael and she will say that “he loves his family, pizza and horseback riding.” Tamburello is her son’s spokeswoman because Michael has a rare condition that has left him unable to communicate verbally; he has vision, hearing, feeding and motor challenges, too. Although Michael is 39, he can’t dress or cook for himself. Michael lives in a group home and participates in activities thanks to funding from Medicaid.

Tamburello, who has lived in Verona for 39 years, has been very private about Michael’s needs. But all that changed just days after Donald J. Trump was sworn in as the 47th president of the United States because the new administration froze Medicaid payments to all 50 states. A federal judge quickly imposed an injunction, but in late February, Republicans in the House of Representatives passed a budget resolution that calls for steep tax cuts. While not mentioning Medicaid by name, the resolution directed the congressional committee that oversees Medicaid to find $880 billion in cuts that can only be found in Medicaid.

A deeply worried Tamburello posted to social media about how cutting Medicaid would affect her son. The post caught the attention of Town Council member Christine McGrath, who shared it with Rep. LaMonica McIver, Verona’s new representative in Congress. McIver then extended an invitation to Tamburello to be her guest at President Trump’s speech to a joint session of Congress on Tuesday, March 4.

“I wanted to put a family face on how important Medicaid is to families of children with disabilities,” Tamburello says.

Medicaid helps large numbers of people across the country: 7.2 million senior citizens get help at home and in nursing homes, and it assists 7.2 million children, including 700,000 in New Jersey, where Medicaid is called New Jersey FamilyCare.

Tamburello has become well-acquainted with what Medicaid does and what people with disabilities need. She worked in the Bergen County Special Services School District for 21 years, and has been a board member for Youth Consultation Service, a nonprofit that serves at-risk children for five years. She has long been a volunteer with the New Jersey Regional Family Support Planning Council (NJRFSPC), a nonprofit that helps families of individuals with developmental disabilities, and in October 2022 was elected its vice chair.

From her perch in the gallery of the Hall of the House on Tuesday night, Tamburello listened intently for a mention of Medicaid in President Trump’s 99-minute speech. While that didn’t happen, she remains wary.

“If he [President Trump] doesn’t touch it, I’ll be the first to say ‘Thank You’,” Tamburello says.

For now, Tamburello plans to continue helping the NJRFSPC and keeping an open line to Congresswoman McIver. And she will encourage her friends and neighbors to become informed about Medicaid. “This is vital,” she says. “This is not milking the system.”

“Michael is the face of Medicaid,” she adds. “He is not able to work and is not collecting these benefits fraudulently. I am so honored to join Congresswoman McIver to help everyone and especially those in power to make decisions how vital Medicaid is my family and so many families like mine.”

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Elon Musk and the menacing return of the R-Word - ‘The basis of eugenics’:

By Justin Kirkland, The Guardian, March 3, 2025

The slur is rooted in the dehumanization of people with intellectual disabilities. Its resurgence threatens the fragile progress we’ve made

I got into my one and only physical fight when I was in seventh grade. It was right after school let out, the other boy was called Nathan, and moments before I launched at him, he knocked the books out of my brother Casey’s hands and called him “retarded”. More than 20 years after that scuffle, I still wonder how often Casey, a now 35-year-old autistic man, is called that word. Given the current political landscape, I’m certain he’s going to start hearing it more often.

The R-word is in a new era of prominence in rightwing, chronically online circles – especially on 4chan and X. A favorite of those who currently hold power or stand to gain power under Donald Trump’s second administration, the slur is being used with gleeful relish to belittle and mock ideological enemies.

In the past year, Elon Musk has used the R-word at least 16 times on X. He thought Ben Stiller was one for endorsing Kamala Harris; so was the Facebook co-founder Dustin Moskovitz for comparing Tesla to Enron.

Elsewhere, brash, right-leaning personalities such as the political commentator Dave Rubin, and Dasha Nekrasova and Anna Khachiyan of the podcast Red Scare, frequently throw the word around with provocative irreverence, attempting to discredit those who don’t align with their politics.

I’ve spent my life on the lookout for this word: how it shrinks people with intellectual disabilities down to a caricature, incorrectly depicting them as incapable of coherence and, ironically enough, social decorum; how it communicates a lack of respect for their humanity. It’s just something that you do when you have an autistic brother. And while the slur was certainly more prevalent when we were teenagers in the early 2000s, this resurgence is still menacing, not least because I can’t fight Musk after class.

Right now, the right wants a word that stings, and the R-word does the trick, according to Dr Kelly Wright, an experimental sociolinguist, lexicographer and assistant professor at the University of Wisconsin. In the 2000s, disability advocates waged a moderately successful social campaign to stop kids (and everyone else) from using the slur. Now, its proponents cling to it because of its taboo nature, lauding it as a victory over censorship by the woke mob.

But the R-word isn’t just a rallying cry. It’s an attack on someone’s personhood.

We’ve seen this before. Starting in 1910, the term “mental retardation” was used to diagnose those who were “feeble-minded”, failed to develop on the average timeline, and were deemed by some doctors as “incurable”. Around the same time, the belief that undesirable traits – specifically intellectual disabilities, and eventually race and sexual orientation – could be “bred out” of existence was growing in popularity in the US. This eugenics movement was endorsed by political powerhouses and substantial research on eugenics was bankrolled by the likes of the Carnegie Institution and the Rockefeller Foundation.

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VOR SUPPORTS:

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)

To 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.

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. 

VOR OPPOSES:

To date, no bills have been entered that VOR opposes, though we understand that the budget process is about to begin, and we expressly oppose any attempt to cut $880 billion from Medicaid should that be proposed.