February 21, 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.

Call Your State Directors of

DD Services!

Last week, we sent out emails to the Directors of Developmental Disability services in every state and U.S. Territory, asking them to speak with their governors about how important it is to protect Medicaid from the cuts being considered in Congress.

Please click here to download VOR's Letter

Now we need you to join us, by calling your state offices to tell them your story, to tell them how cutting Medicaid would affect your family, and your loved ones.

Click here to find the address for the Director of DD Services in your state

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!

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

Can't go this year?

You can still help by becoming a sponsor!

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

For the last several months, VOR has been trying to keep our members informed about attempts to cut Medicaid - the very complex federa/;/state program that provides essential services to millions of Americans, including our family members with I/DD and autism.

There have been a plethora of conflicting stories in the press and on social media about how this may or may not happen. Some say the president will protect Medicaid, others say that he supports congress making severe cuts to the federal side of the program, in order to finance his tax cuts, which all experts agree are directed at benefiting large multinational corporations and the wealthiest Americans.

The bottom line is that the extent of cuts will probably be determined by the House Committee on Energy and Commerce. In order to pay for the tax cuts, a The Energy and Commerce would have to cut $880 Billion from Medicaid.

Some members of congress have been saying this can be done by cutting waste, fraud, and misuse from Medicaid. Others say that work requirements would be an effective way to cut Medicaid. But neither of these proposals come close to achieving that magic number of $880 Billion. And both ot these proposals would require hiring new workers in the Medicaid system to oversee this new bureaucracy.

At VOR, we believe that we need to look past the smoke and mirrors, and focus on the most likely scenario - that in order to pay for these tax cuts, severe cuts will be made to Medicaid that will hurt people with I/DD and autism, and place a greater burden for their care on their families and on their already strapped state budgets.

And that's why we are fighting ANY and ALL cuts to Medicaid.

Trump said in an interview with Elon Musk that he wouldn't touch Medicaid. Hours later he endorsed a GOP plan that could slash the program.

By Brent D. Griffiths and Noah Sheidlower, Business Insider, February 19, 2025

President Donald Trump on Wednesday endorsed a House Republican budget plan that could cut billions from Medicaid, just hours after pledging that the healthcare program for millions of disabled and low-income Americans would not be touched.

Republican leaders have called for massive spending cuts to finance trillions in tax cuts and other provisions. House conservatives won a major concession last week, passing a budget blueprint that ties the size of the proposed tax cuts to the size of spending cuts. If Republicans don't cut enough spending, their outline would likely not allow for all of Trump's promises, including ending taxes on tips and overtime pay.

During an interview alongside his senior advisor Elon Musk, Trump said he would not touch Medicaid. He has pledged not to cut Social Security or Medicare, the largest federal government programs, though his administration has recently targeted Social Security over fraud suspicions.

"Medicare, Medicaid, none of that stuff is going to be touched," Trump told the Fox News host Sean Hannity in an interview that aired on Tuesday night.

Senate Democrats criticized Trump's embrace of the House GOP blueprint.

"Last night, the president said, 'I'm not touching Medicare, Medicaid, the VA," Sen. Tammy Baldwin of Wisconsin told reporters at the Capitol. "By this morning, he endorsed the House budget resolution, which paves the way for massive cuts to Medicaid."

Continued

Related article from Politico

Related article from the New York Times

Republicans confront difficult Medicaid choices in search of savings to help pay for tax cuts     

By Kondsey McPherson, The Washington Times, February 15, 2025

Congressional Republicans are targeting Medicaid, the government health insurance program for low-income Americans, for hundreds of billions of dollars in savings to help pay for sweeping tax cuts, but the extent of reform is creating intraparty divisions.

House Speaker Mike Johnson, Louisiana Republican, insists his conference does not plan to cut Medicaid benefits as it investigates “fraud, waste and abuse” and other “non-benefit reform to the program.”

Many Republican lawmakers fear that some of the proposed changes will reduce benefits and are warning of political consequences if the party overplays its hand.

“Hopefully, we learned our lesson from a number of years ago with Obamacare. If you are going to take people’s health care away, you damn well better have something to replace it with,” said Rep. Jefferson Van Drew, New Jersey Republican. “It’s life and death for people.”

Medicaid, a joint federal and state program, is the largest source of health care coverage in the United States, with 72 million people enrolled as of October.

Federal law requires coverage for certain groups of people, but eligibility is generally based on income and varies by state. Children are covered up to at least 133% of the federal poverty level in every state, and adults are too in most states.

The House Republicans’ budget blueprint, which outlines tax and spending targets for advancing President Trump’s legislative agenda, calls for at least $1.5 trillion in spending cuts over 10 years to help fund comprehensive tax reductions. The House Energy and Commerce Committee is tasked with identifying at least $880 billion of those savings.

“There’s no way to get there, to that number, without Medicaid,” Rep. Russ Fulcher, an Idaho Republican who serves on the committee. “It’s just too much.”

Continued

The Senate passed its budget. Let’s talk about what that means for the House

Punchbowl News, February 21, 2025

Happy Friday morning.

At 4:46 a.m., the Senate passed its “skinny” budget resolution after a nearly 10-hour vote-a-rama, the first step in enacting President Donald Trump’s sweeping legislative agenda.

There are two ways to look at this: This resolution is a bit out of step with the Trump administration. Trump publicly said Wednesday that he likes the much broader House GOP resolution better and hopes Hill Republicans rally around that.

But to their credit, Senate Republicans understand that Trump’s moods and preferences shift like the wind. They averted a last-minute disaster by getting Trump to bless the process and passed their budget resolution.

Let’s be clear: This is a win for Senate Majority Leader John Thune and Budget Committee Chair Lindsey Graham (R-S.C.). Giving Trump “optionality” if the House GOP plan fails was a smart move by Thune. It’s a recognition that Speaker Mike Johnson is working with a very small – and often turbulent – majority where things can go off the rails quickly.

There were a few notable amendment votes during the vote-a-rama, which is mostly an exercise for the minority party to force uncomfortable — yet non-binding — votes.

Sen. Susan Collins (R-Maine) joined all Senate Democrats in voting for an amendment that would prevent tax cuts for billionaires while food prices are rising. Collins and Sen. Josh Hawley (R-Mo.) later backed a Democratic amendment that would prohibit tax cuts for wealthy Americans if any Medicaid funding is cut. The pair also voted for an amendment barring any reductions of Medicare or Medicaid benefits. (More on this angle in a bit.)

So now, the Senate waits. Johnson, House Majority Leader Steve Scalise and House Majority Whip Tom Emmer plan to have their budget resolution on the floor next week. Scalise told us he expects it to pass. Johnson, however, told us he isn’t so sure it will get through the House next week but perhaps the week after. Whenever the House passes its resolution, the two need to be melded together. Both chambers must pass the same resolution in order to kick off reconciliation in earnest. Then Republicans can begin constructing the package that will contain the policies in Trump’s agenda.

There are lots of complications here. Let’s get into it.

Johnson’s challenge. If you are a House Republican from a nominally red district, is it worth it for you to vote for the House GOP leadership’s budget resolution?

This resolution includes instructions for the House Energy and Commerce Committee to find $880 billion in cuts. This will undoubtedly include Medicaid and social-safety net cuts that could affect millions of low-income Americans and children.

Now, will these cuts impact Medicaid benefits and beneficiaries? Johnson says no, Republicans will only target waste, fraud and abuse. But Democratic leaders say they will have an impact, and political groups affiliated with House Democrats are already running ads accusing Republicans of cutting Medicaid. This will only intensify as this partisan fight unfolds.

If you’re one of these House Republican moderates, why not try to sink the House’s budget resolution and hope that Johnson and his leadership team eventually bring up the Senate version later on?

There were a few notable amendment votes during the vote-a-rama, which is mostly an exercise for the minority party to force uncomfortable — yet non-binding — votes.

Continued

Related Story

Senate G.O.P. Passes Budget Resolution, and Punts on Tough Questions

By Catie Edmondson, The New York Times, February 21, 2025

The budget plan that Republicans pushed through the Senate early Friday was a necessary first step toward enacting President Trump’s ambitious domestic goals, but it punted the most difficult and divisive questions about how Congress will do so.

On a largely party-line vote, 52-48, Senate Republicans won adoption of a blueprint that calls for a $150 billion increase in military spending and $175 billion more for border security over the next decade.

How will they pay for it? That’s a question for another day. What about the huge tax cuts they and Mr. Trump have promised? We’ll figure that out later, senators say.

Over in the House, Republicans have been agonizing to come up with at least $2 trillion in spending cuts to pay for Mr. Trump’s fiscal agenda and placate their most conservative members. Their plan, which G.O.P. leaders hope to put to a vote as early as next week, loads vast tax cuts and policy changes into one huge package and calls for slashing government programs deeply to finance it all. But it faces a perilous road through the closely divided House, where Republicans hold a razor-thin majority.

Republicans in the Senate have essentially delayed any decision on those thorny details, focusing instead on delivering an early win to Mr. Trump in the form of money for his hard-line anti-immigration agenda. They said they would address questions of spending and tax cuts later in a separate bill.

“We’ve decided to front-end load security,” said Senator Lindsey Graham of South Carolina, the chairman of the Budget Committee. “We want to make the tax cuts permanent. We’re going to work with our House colleagues to do that. They expire at the end of the year, but we have time to do that. It is the view of the Republican Senate that when it comes to border security, we need not fail. We should have the money now to keep that momentum going.”

It is a strategy that has involved the Senate leapfrogging the House in an attempt to fast-track a political victory for Mr. Trump. But it also leaves unresolved some of the trickiest issues that could make or break Republicans’ push to enact a sweeping fiscal plan over the objections of Democrats.

Continued

Republicans consider cuts and work requirements for Medicaid, jeopardizing care for millions

By Amanda Seitz, Andrew DeMillo, andKevin Freking, Associated Press, February 18, 2025

Republicans are weighing billions of dollars in cuts to Medicaid, threatening health care coverage for some of the 80 million U.S. adults and children enrolled in the safety net program.

Millions more Americans signed up for taxpayer-funded health care coverage like Medicaid and the Affordable Care Act’s marketplace during the Biden administration, a shift lauded by Democrats as a success.

But Republicans, who are looking to slash federal spending and offer lucrative tax cuts to corporations and wealthier Americans, now see a big target ripe for trimming. The $880 billion Medicaid program is financed mostly by federal taxpayers, who pick up as much as 80% of the tab in some states. And states, too, have said they’re having trouble financing years of growth and sicker patients who enrolled in Medicaid.

To whittle down the budget, the GOP-controlled Congress is eyeing work requirements for Medicaid. It’s also considering paying a shrunken, fixed rate to states. All told, over the next decade, Republican lawmakers could try to siphon billions of dollars from the nearly-free health care coverage offered to the poorest Americans.

Weeks before Congress began debating those changes, Republican governors in Arkansas, Ohio and South Dakota were making moves to implement Medicaid work rules of their own, likely to be approved by President Donald Trump’s administration. 

Speaker Mike Johnson of Louisiana has floated the idea of tying work to Medicaid.

“It’s common sense,” Johnson said. “Little things like that make a big difference not only in the budgeting process but in the morale of the people. You know, work is good for you. You find dignity in work.”

But about 92% of Medicaid enrollees are already working, attending school or caregiving, according to an analysis by KFF, a health policy research firm.

Read the full article here

Steve Bannon, US hospitals join GOP rebellion over Medicaid cuts

By Billy House and Bloomberg, Fortune. February 16, 2025

A quiet rebellion among Republicans representing working-class and low-income areas against President Donald Trump’s legislative agenda has picked up some powerful new allies: US hospitals and conservative agitator Steve Bannon. 

The party’s leaders have worked to placate budget hawks and Republicans in high-tax and high-income areas who have dominated the GOP debate over the extension of Trump’s 2017 tax cuts and the corresponding cost-cutting crusade led by billionaire Elon Musk, Trump’s most prominent adviser. 

Now the party’s biggest target — the Medicaid health-care system that insures 72 million low income and disabled people — threatens Trump’s agenda in a House where only a few Republican defectors could sink it. 

On Thursday, Bannon, a former Trump adviser who has emerged as Musk’s loudest conservative critic, warned Republicans against taking a “meat ax” to the program to pay for Trump’s priorities. 

“Medicaid, you gotta be careful,” Bannon said on his Thursday podcast. “Because a lot of MAGAs are on Medicaid, I’m telling you. If you don’t think so, you are dead wrong.”

But the House Republicans’ budget blueprint unveiled this week would indeed slash Medicaid, directing the committee that oversees the program to find at least $880 billion worth of spending cuts over the next decade.

Those cuts — if all directed at Medicaid — would account for about 10% of annual funding for it and threaten to affect state budgets, hospital finances and individual benefits. 

For his part, Trump has promised the government health-insurance program won’t be cut. 

“We’re not going to do anything with that, unless we find some abuse or waste,” Trump said in January. “The people won’t be affected. It will only be more effective and better.”

The American Hospital Association, whose political action committee spent some $1.8 million in the 2024 election cycle, on Friday implored Congress to reject those cuts. 

“Medicaid provides health care to many of our most vulnerable populations, including pregnant women, children, the elderly, disabled and many of our working class,” the organization, which represents nearly 5,000 hospitals and healthcare systems, said in a statement. 

In total, Republicans are seeking at least $2 trillion in spending cuts in their budget plan, and social safety-net programs would bear the brunt. The Agriculture Committee, which oversees food aid programs, would cut $230 million, and the Education Committee would slash spending by some $330 million.

Republican Representative Brian Fitzpatrick pleaded with his colleagues recently to protect their working-class and low-income constituents as Musk scoured the federal budget for savings. 

The Pennsylvania lawmaker, who represents economically diverse Bucks County, is one of about a dozen House Republicans urging the party to protect Medicaid, food aid and other social safety-net programs. 

“It’s laudable to want to cut out fraud, waste and abuse, to cut out fat, eliminate inefficiencies and redundancies in the system,” Fitzpatrick recalled telling his colleagues behind closed doors. “But we still need to make sure that we maintain a social safety net for the people that need it. That’s becoming of American values.”

Continued

Indiana joins federal lawsuit surrounding constitutionality of disability civil rights law  

By David Gray, Fox 59 Indianapolis, February 14, 2025

The State of Indiana has joined a lawsuit that aims to declare Section 504, a federal civil rights law that protects against the discrimination of those with disabilities, unconstitutional.

According to a lawsuit filed in a federal court in Lubbock, Texas in September 2024, 17 states -including Indiana – are challenging the United States Department of Health and Human Services on its “Final Rule” addition to Section 504 in May 2024.

Section 504, a portion of the Rehabilitation Act of 1973, was the first civil rights legislation that protected disabled people from discrimination, according to the U.S. Administration for Community Living’s website.

The act states individuals with disabilities should not be excluded from participating in, denying the benefits of or being subjected to discrimination under any program or activity that receives federal funds. This includes health care, public transportation and public education.

In May 2024, former President Joe Biden signed an order to add “gender dysphoria” to the definition of disability in Section 504, stating it could be considered a physical or mental impairment entitled to protection.

This addition spurred the lawsuit, according to the court documents, with the defendants stressing that gender dysphoria cannot be confirmed or denied by any physical test.

The lawsuit argues that the Americans with Disabilities Act, which shares the definition of disability with the Rehabilitation Act, “expressly excludes from that definition ‘transvestism, transsexualism, pedophilia, exhibitionism, voyeurism, (and) gender identity disorders not resulting from physical impairments or other sexual behavior disorders.'”

The lawsuit also claims the Final Rule exceeds the authority of the Department of Health and Human Services by:

• Obligating all recipients of federal financial assistance to provide services in ‘the most integrated setting’ as defined in the Final Rule
• Prohibiting actions that result in ‘serious risk of institutionalization’
• Allowing discrimination claims to be brought when no institutionalization or segregation has actually occurred.

“The Final Rule’s stipulation that gender dysphoria ‘may be a disability’ is contrary to the express language in the Rehabilitation Act and the ADA, and the court should set aside the Final Rule,” the documents said, “enjoin Defendants from enforcing or implementing it and declare it unlawful.”

Specifically, the lawsuit said that through the state of Indiana’s participation in the Medicaid program, compliance with this Final Rule would “add new regulatory burdens and impose substantial costs on the state.”

However, the lawsuit as it is currently written would do away with Section 504 entirely, not only the addition of the Final Rule. According to the demand for relief portion of the complaint, the states are asking a federal judge to declare Section 504 as “unconstitutional” and “issue permanent injunctive relief” so the states do not have to enforce Section 504. 

Continued

Lawsuit Filed By 17 States Threatens Disability Protections, Advocates Say

By Michelle Diament, Disability Scoop, February 20, 2025

Over a dozen states are seeking to invalidate one of the nation’s key disability rights laws, advocates are warning, jeopardizing access to health care, education and more.

A lawsuit brought by Texas and 16 other states is calling for an end to Section 504 of the Rehabilitation Act. The 1973 law bars discrimination on the basis of disability at any entity that receives federal funds.

The suit known as Texas v. Becerra was filed in response to an update to Section 504 regulations that was finalized by the Biden administration last year. With the litigation, the states are looking to ensure that gender dysphoria does not qualify as a disability under the rule. However, in challenging the regulations, the states’ lawsuit asks the court to “declare Section 504, 29 U.S.C. § 794, unconstitutional” in its entirety.

“If this happens, it would be a disaster for disabled people and everything from education to employment would be negatively impacted,” said Maria Town, president and CEO of the American Association of People with Disabilities.

Section 504 has a broad reach, extending to health care, public education, housing, transportation and much more, advocates say. While many students with disabilities are covered by the Individuals with Disabilities Education Act, federal figures show that 3% of students are served under Section 504 alone.

The latest 504 regulations clarified that medical providers cannot make treatment decisions based on disability biases, expanded the availability of accessible medical diagnostic equipment and set expectations for accessibility on providers’ websites and mobile applications, among other changes.

If the court were to determine that Section 504 is unconstitutional, disability advocates are concerned that the basis of such a decision could also undermine other laws, including the Americans with Disabilities Act.

“If the judge were to adopt it, and actually declare the statute unconstitutional, it could portend that other anti-discrimination statutes based on race and sex and ethnicity are also unconstitutional for the same reason,” Steven Schwartz, senior counsel at the Center for Public Representation, said during a recent webinar. “And because there’s provisions in the regulations that tie together, that link 504 and the ADA, and prohibitions on race and sex discrimination, it links them all in how they’re enforced. Striking down the rule might imperil the ADA as well.”

Continued

Kids’ disability rights cases stalled as Trump began to overhaul Education Department

By Heather Hollingsworth, Collin Binkley, and Annie Ma, Associated Press, February 20, 2025

It was obvious to Christine Smith Olsey that her son was not doing well at school, despite educators telling her to leave it to the experts. The second-grade student stumbled over words, and other kids teased him so much he started to call himself “an idiot.”

Though her son had been receiving speech and occupational therapy, Smith Olsey said his Denver charter school resisted her requests for additional academic support. She filed a complaint with the state and then, in September, the Education Department’s Office for Civil Rights.

In January, her son’s case came to a halt.

“I have to postpone meetings with you to discuss the case,” a department mediator wrote to her on Jan. 23, three days after President Donald Trump’s inauguration. “I am sorry for the inconvenience. I will be in touch as I am able.”

As Trump began to reshape the Education Department, investigations and mediations around disability rights issues came to a standstill.

Standing up for children with disabilities has been a primary role of the department’s civil rights office, which enforces protections guaranteed under the Individuals with Disabilities Education Act. Historically, most complaints to the department have involved disability discrimination — parents saying their disabled child is not receiving accommodations they need to learn, which schools must provide under federal law.

It’s not unusual for new presidential administrations to freeze cases while they adjust priorities, but exceptions typically are made for urgent situations, such as a child’s immediate learning situation. The freeze on pending cases and Trump’s calls to dismantle the department altogether left many parents worrying about the federal government’s commitment to disabled students’ rights.

In the first weeks of the Trump administration, the Education Department has launched investigations of complaints involving antisemitism and transgender athletes allowed to compete in women’s sports, delivering on Trump’s vow to use federal funding as leverage to assail perceived “wokeness” in schools.

It’s worrisome the administration has said so little about responding to complaints from families of students with disabilities, said Catherine Lhamon, who led the Office for Civil Rights under former presidents Joe Biden and Barack Obama.

“If it is not aggressively engaged in protecting those rights, the office is not doing its job,” Lhamon said in an interview. 

Continued

N.J. put unsupervised disabled man in ‘immediate jeopardy,’ inspectors say

By Susan K. Livio, NJ. com, February 18, 2025

Employees put a resident at a state institution for people with developmental disabilities in “immediate jeopardy” by leaving him unsupervised, enabling him to walk away from his residence, a state spokesman confirmed.

Two employees at the Vineland Developmental Center are assigned to supervise Nicholas Aquilino, a 37-year-old nonverbal man with severe autism, according to his mother, Cynthia Allen.

But on Dec. 15, Aquilino was spotted on the campus by a Vineland center employee “outside by himself walking in the street,” according to emails between Allen and the state Department of Human Services. He was not injured, the emails said.

A spokesman for the New Jersey Department of Human Services, which oversees the Vineland facility, wrote in an email that “at 12:03:26 p.m. an individual walked away from (the) assigned facility building. Staff began escorting the client back to the assigned facility building at 12:04:40 p.m.” It was not clear whether this time reflects when Aquilino actually left or when he was spotted outside his cottage.

The state Department of Health investigated the incident last month and determined staff had neglected Aquilino by not supervising him, according to correspondence between Allen and the Department of Human Services.

State health inspectors also declared the facility to be in “immediate jeopardy,” as a result of the incident. The Department of Health defined this as “a situation in which immediate corrective action is necessary because the facility’s noncompliance with one or more requirements of participation has caused, or is likely to cause, serious injury, harm, impairment, or death to a resident receiving care in a facility.”

Allen, who is also Aquilino’s legal guardian, said she is incensed there weren’t more serious consequences.

“It is exceptionally dangerous out there for an individual who has no sense of danger,” Allen told NJ Advance Media in an email also shared with other parents of children with developmental disabilities.

“There are no security guards, alarms on doors, or cameras at VDC. Every store and place of business has these nowadays but not residences for our most vulnerable citizens. There is no plan in place to prevent staff from disappearing again as they have done before.”

“When I visited Nick today, he grabbed my hand and pulled me out the front doors. He has never done this before. He wants to leave VDC-- he does not feel safe! He will run away again,” Allen wrote.

This is not the first time Allen has raised serious concerns about the Vineland center’s care and supervision of her son. She has legally challenged the state’s decision to place him at Vineland in September 2023, after he was a hospitalized with a dental emergency.

He had lived for 11 years at the Woodbine Developmental Center in Cape May County prior to his hospitalization and she wants him returned there. She said her legal rights as his guardian continue to be ignored, as she has also complained that he is being overmedicated to control his anxiety and behaviors such as hitting and biting.

Read the full article here

Minnesota lacks caregivers. What could Trump’s policies mean for a workforce that relies on immigrants?

Deportations and Trump’s halt on refugee resettlement could threaten an already short-staffed caregiving workforce that relies on immigrants and refugees.

By Jessie Van Berkel, The Minnesota Star Tribune, February 15, 2025

Growing up in Ethiopia, Kulud Hassan Faisal would assist her grandparents with little tasks, grabbing them water or helping cook. She knew from a young age that she wanted to be a nurse.

“I want to help people,” said the 27-year-old St. Paul resident, who next month will take the test to become a certified nursing assistant and is interested in working with older adults.

She will join a direct support workforce that relies heavily on immigrants and refugees to serve Minnesotans who need assistance, including people with disabilities, the chronically ill and seniors. It’s a workforce that is already failing to meet a growing demand.

President Donald Trump’s crackdown on immigrants and refugees has some members of the caregiving industry, and those who rely on it, on high alert. Direct support workers, who serve vulnerable individuals, generally need valid immigration paperwork to meet background check requirements, experts in the field said, but they added that’s not always the case for workers' family members, who could be swept up in mass deportations.

They are also worried about the president’s suspension of refugee resettlement, which is being challenged in court.

Hassan Faisal moved to the U.S. last year to join her parents, who are refugees, and fears Trump’s policies will keep her sister in Ethiopia from reuniting with their family.

Many direct support workers in Minnesota are immigrants and refugees from African countries, including Liberia, the Democratic Republic of the Congo, Ethiopia and Somalia, industry members said. The future pipeline of workers into the profession is “extremely threatened” by federal policies that would slow immigration from such countries, said Tom Gillespie, president and CEO of Living Well Disability Services.

The Mendota Heights-based nonprofit serves more than 300 people with disabilities across the metro area, and Gillespie estimates more than half of their frontline workers are from other counties.

“Tens of thousands of Minnesotans … literally do not get out of bed, do not leave the house, do not eat a meal, any of that, without a caregiver’s intervention,” Gillespie said. “It takes a caregiver to open up the world for people that we serve, and without those caregivers, the world stays far too small for people with disabilities.”

Continued

Trump budget uncertainty raises concerns for Alabama developmental disability services

By Alandar Rocha, The Alabama Reflector, February 17, 2025

An Alabama Department of Mental Health (ADMH) official said Friday that a state program providing services to people with developmental disabilities and mental health challenges could suffer from possible federal cuts.

Kathy Sawyer, associate commissioner for ADMH, said President Donald Trump’s threats to cut federal aid to the states could harm the agency’s Division of Developmental Disabilities, which gets most of its funding from Medicaid. 

“We had one meeting nationally, and every 15 minutes, they were interrupting, saying, ‘We just got a new initiative, a new memo,’ so it’s just so uncertain,” Sawyer said. “But my appeal to you all, is to remind you that 80% of our dollars are those dollars.”

The Division of Developmental Disabilities operates three waivers that help people with developmental disabilities receive services they typically can only receive in an institution or care facility in their own homes or communities. These services include crisis intervention services, independent living skills training and employment services.

The division currently provides services for 5,100 individuals through home and community-based waivers. Swayer said there are about 1,700 people on a wait list, and that number is growing.

“We continue to increase enrollments in all three of the waivers, but despite our work and our desires, the waitlist continues to grow,” Sawyer said.

The Trump administration and a GOP-led Congress are considering Medicaid cuts to fund extended tax breaks. The potential cuts include lowering the federal government’s 90% funding match for Medicaid expansion states, which could push more costs onto states, and imposing additional eligibility requirements, such as work mandates for enrollees.

In late January, Trump’s freeze on federal assistance caused confusion and concern among Alabama agencies and nonprofits that rely on federal funding. The Alabama Medicaid Agency reported being temporarily locked out of its federal funding portal. Organizations like the United Way of Central Alabama warned of significant operational risks, with vital services — such as housing for veterans, meals for seniors and child support programs — potentially at stake.

Families with aging caregivers are struggling as they wait for services, leading to an increase in individuals with developmental disabilities being placed in hospitals or abandoned at emergency rooms, said Sawyer, who also serves on the Alabama Department of Human Resources (DHR) board. She also said the state has also seen a rise in cases where children with developmental disabilities end up in the custody of DHR due to behavioral challenges that their families are unable to manage.

Continued

Indiana instituted waitlists to curb soaring Medicaid budget. Will they ever go away?

By Kayla Dwyer, Indianapolis Star, February 17, 2025

As Indiana lawmakers debate how to tackle the ever-rising cost of Medicaid, more than 10,000 Hoosiers in need of institutional-level care remain on waitlists for certain waiver services.

There's little sign Indiana lawmakers will legislate this problem away in the short term. The legislation directly targeting the waitlists won't make it out of committee before Monday's deadline, and the House's state budget proposal does not include a fix.

"That's hard to say," Rep. Jeff Thompson, R-Lizton and chair of the Committee on Ways and Means, said Friday about the odds of negotiating any relief. "A lot of discussion between now and April."

These waitlists restricting access to home and community-based care, like assisted living facilities, were enacted last year as a cost-cutting measure after the Medicaid office discovered it had underbudgeted by about $1 billion.

The main argument against the waitlists, besides the delayed care to people on them, is that they are self-defeating in terms of saving money: Those who can't get into assisted living when they need more advanced care might go to a nursing home instead, which is more costly.

The new FSSA Secretary Mitch Roob ― reprising a role he held during the Gov. Mitch Daniels administration ― said he subscribes to that argument.

“I think the previous administration, candidly, in a panic, decided to do this because they needed what was a quick fix," he told the House ways and means committee in January. "And it is a quick fix, but it’s probably not the best longterm fix.”

Republican Rep. Brad Barrett had introduced a bill to prohibit waitlists for assisted living facilities and require FSSA to petition the government for more waiver slots. House Bill 1592 had a hearing, but hasn't passed committee and isn't on the schedule before Monday's deadline.

So rather than legislate away the waitlists, the prevailing strategy is to go through an exercise of finding inefficiencies in Medicaid and scrutinizing eligibility ― through another piece of legislation, Senate Bill 2 ― in the hope that the cost savings will negate the need for them.

Continued

Kansas wrestles with ways to shorten waitlist for disability care  

By Blaise Mesa, The Beacon, February 14, 2025

Holly Oleson helps people who are intellectually disabled live as independently as possible. 

She’s a lead direct support professional at Honey Bee Community Services in the Kansas City area, acting as the “brakes and gas” for the people she serves.

“The person served remains at the wheel with full control of their lives,” she said, but support professionals help them cook, prepare for job interviews and assist with finances. 

Oleson told Kansas lawmakers about one particular client who needs consistency. This client doesn’t trust people “because they’re here one day and gone the next,” she said during a bill hearing. 

“Within three months his world was flipped upside down when all three of his preferred staff left,” Oleson said. “This left him with a ton of emotions including abandonment, trust and attachment issues.”

Direct support professionals have high rates of turnover — sometimes up to 50%. The struggle to find staff is problematic in many ways. But it’s now one reason state lawmakers are hesitant to direct more funding to reduce the intellectual/developmentally disabled waitlist. 

The waitlist is currently more than 4,000 people long, and Kansas lawmakers were considering allocating enough funding to take 500 people off the waitlist. That request was cut down to 320 slots, though, because the state might not have enough direct support workers to help another 500 people, said Rep. Troy Waymaster, a Bunker Hill Republican. 

“I would love nothing more than to put more money towards the waiting list and get individuals off the waiting list,” said Waymaster, chair of the House Appropriations Committee, during a budget meeting. “(But) I know that the capacity is not there.” 

Last year, lawmakers allocated funding to take 500 slots off the waitlist and were planning to follow that up with another 500 slots this year. In 2024, lawmakers were told finding staff for that 500 slots would be difficult. In 2025, Waymaster just doesn’t see how the workforce can catch up to the demand in the short amount of time. 

Read the full article here

Arizona - Funding for services to help people with developmental disabilities in limbo

By Zach Prelutsky, AZ Family, February 17, 2025

Families of people with developmental disabilities are finding themselves in the middle of a political fight.

Governor Katie Hobbs says the Division of Developmental Disabilities (DDD) needs more money due to a higher caseload, but Republican lawmakers in Arizona are blaming the governor for the program’s need for more money in the first place.

The DDD serves around 50,000 people in Arizona each year, including Brandi Coon’s 10-year-old son Tyson.

“(He) loves Frozen. Frozen 1 and Frozen 2,” said Coon.

Tyson also loves to have the final say.

“Watching him have that level of independence is indescribable,” she said.

At just six months old, Tyson suffered a traumatic brain injury after developing bacterial meningitis. That has led to several diagnoses’ including cerebral palsy and epilepsy.

“This is not just my family, a few families. This is tens of thousands of Arizona families that it’s impacting,” said Coon.

The DDD is at risk of running out of money, as soon as late April or early May. Hobbs’ budget proposal included a funding increase for DDD, due to a growing number of people using the program.

“We provide some of the best services for our folks in DDD care anywhere in the country and supplemental budget requests are a routine part of budgeting, and I am hopeful that the Republicans in the legislature don’t decide to politicize this,” Hobbs said during a news conference on Tuesday.

Continued

Maine - Valuing direct care professionals requires more than words  

By Stella Cain, Bangor Daily News, February 18, 2025

As Maine prepares another two-year budget, it’s disheartening and disappointing to see the governor’s proposal ask for even more sacrifice from those already undervalued and unpaid. For the people who provide care and support to your older and disabled family members, the governor’s budget is a huge let down.

It’s well known that Maine is facing a serious direct care crisis. If you’ve sought this kind of care for a loved one, you know there aren’t enough caregivers for all the care that’s needed. It also should be obvious that paying direct care professionals a fair wage is the best tool to attract and retain us.

Instead, the governor’s proposal takes away our cost-of-living increases, which essentially means we’re being asked to take a $1,700 a year pay cut. Before lawmakers make their final budget decisions, I hope they will take the time to learn about the work that direct care professionals do and decide for themselves how it should be valued.

I’ve been working with adults who have intellectual or developmental disabilities in their own homes since 2020. During the pandemic, my job involved managing uncertainty, combating loneliness, calming fears, and finding ways to give life meaning inside four walls. I helped the people I support learn to use technology to stay connected to their loved ones and buy groceries online. I learned to play the guitar and the djembe with them. I helped host a virtual Christmas party.

Now that we’re on the other side of the pandemic, my role is to teach people I support the skills they need to live the life they want — skills many of us take for granted. Where is it safe to walk? Who are safe people to ask for help? What information is private? How do you take a bus or call a taxi? What kinds of topics are inappropriate for sharing at work?

It also involves sitting in grief with older individuals whose friends are dying. And managing anxiety around losing mobility and bladder control. It means advocating for someone who needs a ramp installed so they can safely come and go from their home. Or helping someone learn to read at the age of 70.

During my orientation back in 2020 I was told, “if you chose this career to pay the bills, you chose wrong.” That remark seems truer now than ever. Because wages for direct care workers haven’t kept pace with the rising cost of living, a new challenge is now a regular part of my work: convincing new direct care staff to stay in the profession even though they can make more money at an easier and more predictable job.

In my five years, we’ve only added one new person to our team. The rest quit after just a few days. In the last year, our agency hired 80 people and lost 83. Not only does this make the workload far more intense for those of us who remain, it’s also extremely upsetting for the people we support to be introduced to exciting new people, only to have them leave.

Direct care professionals do whatever it takes to help the people they support live their very best lives. I started at one of the hardest times someone could start in this field, and I stayed because of all the moments when I can see the people I support step a little more into themselves. I know this has value to them and their family members. I hope lawmakers see the value, too.

Read the article here

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So far this year, 1,818 bills have been introduced in the 119th Congress.

Only a very few (3) of these bills have anything to do with people with I/DD or autism.

As yet, no text or summaries have yet appeared on the congressional website, so we cannot say if we support or oppose the bills.

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