The , the public health insurance program that pairs state and federal money. Federal officials have announced unprecedented actions in Minnesota this year, declaring they could withhold over $2 billion in payments slated for the state and claw back nearly $260 million from last year.

The actions in Minnesota came as part of the administration’s declared crackdown on fraud, but critics have likened them to using a bludgeon instead of a scalpel, probably harming patients who rely on Medicaid for care but are not responsible for fraud in the program.

“It’s going to hurt a lot of people if they end up going through with this,” said Sumukha Terakanambi, a 27-year-old who has Duchenne muscular dystrophy and works as a public policy consultant with the Minnesota Council on Disability.

“Of course we support going after fraud,” Terakanambi said, but “this overly aggressive action is missing the point. It’s not punishing fraudsters. It’s punishing the people.”

Longtime Medicaid observers also doubt the federal actions will achieve their purported objective. , a senior managing director with the consulting firm Manatt, that actions of this magnitude by the federal government are unprecedented, partly because punitive measures against states have “really never been an effective way to address fraud.”

Meanwhile, fraud prosecutions as the U.S. attorney’s office there grapples with the exodus of nearly half its attorneys and a surge in cases from the Trump administration’s immigration crackdown.

Despite these concerns, Centers for Medicare & Medicaid Services head Mehmet Oz said the techniques the federal government is using in Minnesota could be applied to other states, and he has launched social media campaigns alleging high-dollar public benefit fraud in , , , and . And a February release of by the Trump administration’s Department of Government Efficiency appears to be part of a campaign to paint the program as riddled by fraud, Guyer said.

, a research professor at Georgetown University’s Center for Children and Families, said that campaign by the administration seems particularly focused on services designed to keep people with disabilities out of institutions, and he described withholding $2 billion from Minnesota’s Medicaid program as “.”

A ‘Political Football’

Scrutiny of Minnesota’s public benefit programs began early in the Biden administration, years before the most recent investigations. The spotlight on the state’s Medicaid system grew after FBI raids in December 2024.

The following May, an into Medicaid housing stabilization services in Minnesota prompted further scrutiny from federal prosecutors, and from Gov. Tim Walz.

Under the Democratic governor, the state launched investigations into 85 autism providers, ordered a third-party audit of 14 types of Medicaid services deemed to be “high-risk” for fraud, and delayed payments for those services for up to 90 days. Many of the services are ones people with disabilities receive at home, making them more difficult to monitor.  

Terakanambi worried the state’s “heavy-handed approach” would destabilize the entire home care system. While his own care was not disrupted — his parents provide the 10 hours of daily personal care he qualifies for through Medicaid — other Minnesotans with disabilities have said they experienced interruptions and .

In December, one man was after losing his in-home care services amid the crackdown.

“We’re losing sight of the people that have done nothing wrong, that rely on these supports and services to live in the community,” said Sue Schettle, chief executive of , a Minnesota nonprofit that represents organizations supporting people with disabilities. “It becomes a political football.”

Schettle said she took her concerns about the crackdown to state officials, who have since met routinely with her and other advocates. The subsequent federal actions, however, have left her “shell-shocked,” she said.

The ‘Nuclear Option’

In December, a , with help from state Republicans, supercharged the issue in Minnesota, alleging widespread fraud in child care centers owned by members of the Somali community. A follow-up state investigation of the child care centers that were featured in the video determined that all were “.”

On Jan. 6, CMS’ Oz sent Walz a letter alleging Minnesota’s Medicaid program was out of compliance with federal rules on fraud, waste, and abuse, setting the stage for the Trump administration’s move to withhold over $2 billion in federal Medicaid funds to Minnesota this year, about 18% of what the state received the year before.

Minnesota is appealing.

The Republican-aligned Paragon Health Institute, a think tank that recently published a calling for similar enforcement actions across the country, applauded the federal moves.

“That will spur states to take necessary action, thus ensuring that Medicaid funds go to those who are truly eligible,” said , a legal research analyst who co-authored the brief.

Georgetown’s Schneider questioned the necessity and effectiveness of withholding the money.

“I don’t see any relationship between that and actually reducing fraud against the Minnesota Medicaid program, given the state has already taken a lot of action,” he said.

In late February, Oz went further, announcing that on top of withholding $2 billion in future payments to Minnesota, the administration was in federal Medicaid payments to the state.

“We have notified the state that we will give them the money, but we are going to hold it and only release it after they propose and act on a comprehensive corrective action plan to solve the problem,” Oz said at with Vice President JD Vance.

Minnesota the deferment in court.

“We’re waiting for feedback from CMS on our corrective action plan, which is why we were surprised and confused when Dr. Oz said in a news conference with the vice president last week that we needed to provide one,” Minnesota Medicaid director John Connolly said at a March 3 news briefing.

‘Another Minnesota’

Oz and Vance both said during the February news conference that they are not specifically targeting Democratic-led states. Oz noted Florida has a “big fraud problem” and in mid-March sent a letter to state officials with a list of questions about their Medicaid program. Until then, the letters and most of Oz’s social media videos had been limited to California, Maine, and New York, all led by Democrats.

“We might have another Minnesota on our hands,” Oz said in posted the same day as sent to Maine Gov. Janet Mills, a Democrat, requesting information on how the state was addressing Medicaid fraud.

“And if we’re not satisfied with their progress, we reserve the right to cut off payments entirely,” Oz said in the video.

The video and letter were prompted by a in Maine that found the state had made at least $45.6 million in improper Medicaid payments. Similar audits in , , and had comparable findings.

In , Mills called Oz’s letter a “pretense to send ICE and other weaponized federal agents into states led by Democrats.”

CMS spokesperson Chris Krepich said the agency does not take funding actions lightly. “The focus is on strengthening oversight, improving accountability, and ensuring that vulnerable patients receive the services they are entitled to,” Krepich said.

But Terakanambi said it’s not difficult to see how federal actions like those in Minnesota could put services in jeopardy. The amount of money Minnesota could lose from the CMS actions announced this year is already equivalent to about two-thirds of the state’s rainy-day fund.

Many states are looking to reduce or even eliminate funding for home care services over much smaller budget shortfalls. And further cuts are anticipated, with congressional Republicans’ One Big Beautiful Bill Act, signed into law last year, expected to reduce federal Medicaid spending by more than $900 billion over the next decade.

“People will die,” Terakanambi said. “People will lose critical supports and will no longer be able to participate in their community the way they want to.”

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Sam Walker, 35, has severe autism and other disabilities. He is deaf and cannot speak. Sometimes when he’s frustrated, he hits himself or others.

Medicaid provides about $8,500 a month for health workers who visit his apartment in the basement of his parents’ home. The staffers help him with everyday tasks, including dressing, bathing, and eating. They also take Walker on outings, such as dining at restaurants, volunteering at Goodwill, and exercising at a recreation center or on park trails. They stick to a strict routine, which soothes him.

His parents say that without the in-home services, their son would need to move to a specialized residential facility in another state. Sending him away would break their hearts and cost taxpayers much more money. They strive to keep him home because they know change makes him anxious.

“The last thing I want is to put him into some kind of care facility, where he’ll just get kicked out,” said his mother, Leisa. The Iowa Department of Health and Human Services did not respond to Ńîšóĺú´ŤĂ˝Ň•îl Health News’ questions about the Walkers’ case.

Federal Cuts Raise Pressure

Patient advocates say state administrators in Iowa appear to be reining in Medicaid spending by cutting what are known as home and community-based services for people with disabilities, and they’ve heard of multiple families facing battles like the Walkers’.

Disability rights advocates expect the pressure to intensify as states respond to reductions in federal Medicaid funding called for under the Trump administration’s signature tax and spending law, which passed last year.

June Klein-Bacon, CEO of the Brain Injury Association of Iowa, said the cuts and proposed rule changes appear to be part of a quiet attempt to save money in response to the state’s budget deficit and expected reductions in federal Medicaid funding.

Medicaid, jointly financed by the federal and state governments, covers people with low incomes or disabilities. Walker is one of served by “Medicaid waiver” programs, which pay for care that allows people with disabilities or who are at least 65 to live at home.

Unlike most parts of Medicaid, waiver programs are optional for states. Idaho’s governor noted that fact in January, when he suggested legislators consider cutting them. Disability rights groups fear other states will do the same. Leaders in , , and have considered such cuts this year.

Leisa Walker has heard Trump administration officials claim the national Medicaid cuts are intended to reduce waste, fraud, and abuse. That’s not how it will play out, she said. “These are real people, real families, and this causes real suffering when you do this to people,” she said. “It’s a very scary time.”

a private insurance company that manages Sam Walker’s Medicaid benefits, intends to cut his in-home care coverage by about $3,200 per month, his mother said. Company leaders told a judge they are following state officials’ direction, but they did not dispute Leisa Walker’s math.

Walker has been on the waiver program for three decades. It covers assistance from workers known as “direct service providers” — one of whom has been with him for 25 years. His parents receive no pay for the hours they spend caring for him when the aides aren’t working.

On a February morning, Leisa and Kent Walker drove an hour and a half to Des Moines for an appeal hearing. An administrative law judge sat behind a wooden desk in a conference room as the Walkers and their lawyer faced off against three representatives from Iowa Total Care, a subsidiary of the national insurer Centene Corp.

Leisa testified that her son is 6 feet tall and weighs 230 pounds. Although he knows some sign language, he has trouble communicating, she said. When he becomes frustrated or his routine is interrupted, he sometimes wails and hits himself or other people. “It’s devastating to watch,” she testified.

He’s not a bad person, she said. “He doesn’t understand how strong he is.”

She said her family would try to keep his main caregiver employed under the planned Medicaid reduction but would have to drop others who cover nights and weekends. She said no residential facility near their southern Iowa home could address her son’s complicated needs. She said a case manager told her that a Florida facility might be the closest one that could safely handle him.

Leisa Walker testified that the state’s Medicaid program would pay about $22,000 per month to put him in an institution, more than double what the program spends on his home care.

Sam Walker’s longtime psychiatrist, Christopher Okiishi, testified that Walker’s family and their support staff spent years developing a “fragile” but stable existence for him.

Lori Palm, a senior manager for Iowa Total Care, testified that Sam Walker gets about 16 hours of daily assistance financed by Medicaid. Palm said much of that time amounts to “supervision.” She said state officials recently advised her company that the program should pay mainly for “skill-building” time, not supervision.

The Walkers showed the judge a 2018 document in which a previous Iowa Medicaid director stipulated that supervision of people with disabilities is an allowable service for workers paid under the program.

Judge Rachel Morgan asked the Iowa Total Care representatives if the recent policy change was made in writing by the state Department of Health and Human Services. They said it was not and that they couldn’t specify who at the department had given them the new guidance.

The judge suggested during the hearing that for someone like Sam Walker, learning to regulate emotions could be an important form of skill-building. Three days later, the judge ruled in the Walkers’ favor, writing that the insurer’s attempt to cut care hours was improper. The insurer appealed the decision to the director of the Iowa Department of Health Human Services, who could overrule it. The dispute could eventually wind up in district court.

Iowa Total Care and the state Department of Health and Human Services did not respond to questions about the reports that many other Iowans with disabilities face reductions in care hours covered by Medicaid. Department spokesperson Danielle Sample said in an email that the agency supports home and community-based services, which, she noted, help “states save money by avoiding expensive long-term facility care.”

Spokespeople for the federal Department of Health and Human Services, which oversees Medicaid nationally, did not respond to a request for comment on the issue.

Medicaid waiver programs started in the 1980s, after President Ronald Reagan heard about an Iowa girl with a disability who was forced to live in a hospital for months because Medicaid wouldn’t pay for home care. The Republican president thought it was outrageous that the girl, had to live that way, even though home care would have been cheaper.

Members of Congress approved allowing states to use their Medicaid programs to pay for in-home care. But they made the change optional, to offer states flexibility and encourage innovation.

Designating such spending as optional “waiver programs” also made the change more politically palatable, said Kim Musheno, senior director of Medicaid policy for , which represents people with intellectual and developmental disabilities.

Prospects were much different for babies born with serious disabilities before the change, Musheno said. “Doctors instructed families to forget they existed, and to put them in an institution.”

Waivers Have Been Cut Before

All states have Medicaid waiver programs, but benefits and the number of people covered vary significantly. Applicants often wait months or years to get into the programs because of limited funding. More than 600,000 Americans were on waiting lists or “interest lists” for waiver services in 2025, , a health information nonprofit that includes Ńîšóĺú´ŤĂ˝Ň•îl Health News.

Disability rights advocates and care providers have fought for decades to maintain funding for the programs, but a national leader said the threat feels especially severe now.

“When Medicaid is cut, people with disabilities are at the center of the impact,” said Barbara Merrill, CEO of the American Network of Community Outcomes and Resources, which represents agencies that care for people with intellectual disabilities or autism.

That’s what happened after Congress reduced Medicaid funding in 2011, according to a recent paper published by .

States could again rein in waiver programs by limiting enrollment, reducing covered services, or cutting pay for caregivers, who already are in short supply.

However, states that try to cut the in-home care programs could face legal challenges, Musheno said. The U.S. Supreme Court declared in 1999 that people with disabilities have a right to live outside of institutions if possible. The decision, in the case of , has been cited in lawsuits against states that fail to provide care options apart from nursing homes and similar facilities.

Several Iowans who belong to a Facebook group for Medicaid participants have posted in recent weeks that their families were notified of impending cuts in coverage of home care services for people with disabilities.

Sam Walker’s main caregiver, Andy Koettel, has worked with him since Walker was in fourth grade. Koettel, who works full-time, knows how to keep Walker calm in most situations and soothe him during a blowup. Their relationship took years to build, and it is a key reason Walker can continue to live at home with his parents, Koettel said.

“If I was not there, it would be incredibly difficult for all of them,” he said.

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Services at risk include the 24/7 care that allows a 39-year-old with cerebral palsy to live independently; the in-home caregiving that lets a 26-year-old with brain damage from a hemorrhage at birth stay in his family home; and private duty nursing for a 19-year-old with cerebral palsy who has qualified for hospice care for complications including pulmonary decline from a spinal cord injury.

Concerns for such care arose when Idaho Gov. Brad Little, a Republican, proposed cutting $22 million from Medicaid — the joint state-federal health insurance program for people with low incomes or disabilities — to balance the state budget. Home- and community-based services such as caregiving, nursing, and residential rehabilitation are optional under Medicaid, and Little for the cuts.

Across the country, people with disabilities and their families are confronting similar plans to cut Medicaid as states grapple with budget challenges compounded by congressional Republicans’ One Big Beautiful Bill Act, which is expected to reduce federal spending on Medicaid by nearly $1 trillion over the next decade.

A four-hour town hall on the proposal in Idaho drew to the state capitol. Colorado lawmakers heard from concerned residents before pausing a pay cut for family caregivers. In Missouri, families raised alarms about a to services for people with disabilities.

“We saw this coming. We’ve tried to educate members of Congress,” said Kim Musheno, the senior director of Medicaid policy at The Arc, a national disability rights organization.

“Whenever there’s pressure on state budgets like those that are caused by the One Big Beautiful Bill Act, they go after Medicaid, and then they go after optional services,” Musheno said.

Many cuts included in the GOP bill, which President Donald Trump signed into law in July, haven’t yet taken effect, but the law is already impacting state budgets, particularly in states that align their tax rules with federal regulations.

Conforming to the federal law is expected to cost Idaho this year. Colorado lawmakers were called into a special session last year to address a created by the law. Those shortfalls — combined with national trends of increased Medicaid costs, , and further tax cuts passed by some state legislatures — are putting pressure on Medicaid programs.

Still, Musheno said she was surprised by how quickly Idaho targeted services for people with disabilities. “I couldn’t believe it.”

Little had already ordered Medicaid cuts last year as part of an effort to address a budget shortfall after years of and increasing program costs. That led to a in September for medical providers’ work with Medicaid patients. Little’s new proposed would be on top of those previous rate cuts.

“We were told by the legislature that they want to save some money in Medicaid, and so what we put together was a list of seven different options that were there,” Little said at a Feb. 17 press event. “There’s only so many levers we can pull in the Medicaid area that doesn’t jeopardize our funding.”

‘We Just Hold Our Breath’

Amber Grant said any further cuts for the nursing agency that provides care for her 19-year-old son, Matty, could be catastrophic.

He was born with brain damage and cerebral palsy before suffering a spinal cord injury when he was 10. In 2024, he briefly received hospice care before the family decided to work with a palliative care team to help him live out his life.

Through Medicaid, Matty qualifies for 120 hours of in-home private duty nursing care per week. But because of a nursing shortage, he typically receives only about half of that care, and Grant said it would get worse if the nursing agency is subjected to any more reductions.

“The reality is that any of us at any point in time could become disabled,” Grant said. “What kind of quality of care would we want?”

The potential cuts run even deeper for Grant’s family. Through another optional in-home Medicaid program, she and her husband, Jason, are both eligible to be paid for caring for their older son, Luke. The 24-year-old has autism, epilepsy, and an autoimmune condition and requires supervision 24 hours a day.

Jason primarily works as a self-employed remodeler, but Grant’s only income is the $21 an hour she gets to care for Luke. But she can be compensated only for the time she has him one-on-one, meaning when someone else is taking care of Matty, such as Jason or his nurses.

Grant said keeping up with the family’s house payments will be nearly impossible if they lose that income, and she said it seems like only a matter of time before some or all of her sons’ in-home care is disrupted. Idaho is in federal Medicaid funding over the next decade as a result of the One Big Beautiful Bill Act, according to KFF, a national health information nonprofit that includes Ńîšóĺú´ŤĂ˝Ň•îl Health News.

“We just hold our breath every legislative session,” Grant said. “I feel like I’m always trying to prove their worth, to prove their value, and it’s exhausting.”

State Rep. Josh Tanner, a Republican who co-chairs the legislature’s powerful budget committee, said he opposed cutting home- and community-based services, but it was up to a separate committee and workgroup to finalize cuts to the Medicaid program.

Medicaid covers . , the federal government picked up 80% of the state program’s $3.6 billion tab in 2023. Tanner said tapping the state’s $1.3 billion in reserves to fill the $22 million gap was a nonstarter.

“We don’t really have an overall revenue problem in the state right now,” Tanner said, “but we do have a spending problem, and part of that has been Medicaid in general.”

Senate Minority Leader Melissa Wintrow, a Democrat on the budget committee, disagreed, pointing instead to five years of tax cuts passed by the Republican supermajority that have in lost revenue, including last year.

“What we need to do is restore the revenue that we cut and put it back and admit the mistake and stop harming people and the very services that Idahoans depend on,” Wintrow said.

‘It Keeps Me Awake at Night’

It’s also unclear whether cuts to community-based care would save Idaho money, something Tanner acknowledged. For optional Medicaid programs to be approved by the federal government, states must demonstrate that they are cheaper than existing alternatives, such as being cared for in a nursing home. Cutting community-based care would probably push many people with disabilities into more costly institutional care.

That’s what Toni Belknap-Brinegar fears for her son Antahn Brinegar.

A brain hemorrhage at birth left Antahn, now 26, with severe brain damage, physical and developmental issues, and a seizure disorder. Belknap-Brinegar is his primary caregiver, but she realized when Antahn was 8 or 9 that she wasn’t physically capable of caring for her growing son. Now 200 pounds, he has two paid in-home caregivers, Belknap-Brinegar said, both single mothers whose own livelihoods may be in the balance amid talks of cuts.

Nursing homes aren’t equipped to properly care for Antahn, Belknap-Brinegar said. He needs to be constantly monitored for seizures. He can’t communicate his needs well, for example when he has to go to the bathroom.

“Without the services that he has and the care that he gets now, he would end up in a care center, and frankly, he would die,” Belknap-Brinegar said.

While home and community-based services are technically optional parts of Medicaid, a required states to provide them to people with disabilities when appropriate. A Justice Department investigation in the waning days of the Biden administration found that Idaho was into nursing homes, in violation of that ruling. The Trump administration is attempting to slash access to the lawyers who help ensure those rules are followed.

Documents also show the state agency that oversees Medicaid does not think the state has enough space in its residential facilities to care for all the people whose home- and community-based services could be cut under the governor’s plan.

That’s Ned Fowkes’ worry for his 39-year-old daughter, Eva.

A brain bleed when she was an infant left Eva with severe cerebral palsy and significant developmental disabilities. Although Eva is unable to speak, she has a “wonderful awareness,” Fowkes said, and is able to communicate through her expressions and convey her preferences.

After being cared for by her parents for 21 years, Eva was eager for the chance to move into a supported living home, where she could get round-the-clock care while living with another person with disabilities.

“Like most 21-year-olds, she probably wanted to hit the road and not be under the roof of her parents anymore,” Fowkes recalled. “She’s always been courageous in that sense.”

Fowkes and his wife visit at least three times a week, but at 79 and 76, they are no longer able to provide their daughter’s direct care.

The staff at Eva’s home already barely make a living wage, Fowkes said. Cuts to the program that pays for her care would trigger more turnover — or, worse, shutter the agency that staffs the home.

“I don’t know what we would do,” Fowkes said. “Eventually we’d lose our home. We would be bankrupt. Where would Eva go? Where would her roommate go? Who would care for them?”

“It keeps me awake at night,” he said. “Believe me.”

Ńîšóĺú´ŤĂ˝Ň•îl Health News’ Hayat Norimine contributed to this report.

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The 59-year-old, who lives in Harrisburg, North Carolina, closed her nonprofit circus arts school last year because she could no longer see well enough to complete paperwork. She then worked making dough at a pizza shop for a bit. Currently, she sorts recyclable materials, including cans and bottles, at a local concert venue. It is her main source of income ― but the work isn’t year-round.

“This place knows me, and this place loves me,” Kelley said of her employer. “I don’t have to explain to this place why I can’t read.”

Kelley, who lives in a camper, survives on less than $10,000 a year. She says that’s possible, in part, because of her Medicaid health coverage, which pays for arthritis and anxiety medications and has enabled doctor visits to manage high blood pressure.

But she worries about losing that coverage next year, when rules take effect requiring millions of people like Kelley to work, volunteer, attend school, or perform other qualifying activities for at least 80 hours a month.

“I’m scared right now,” she said.

Before the coverage changes were signed into law, Republican lawmakers suggested that young, unemployed men were taking advantage of the government health insurance program that provides coverage to millions of low-income or disabled people. Medicaid is not intended for “29-year-old males sitting on their couches playing video games,” House .

But, in reality, adults ages 50 to 64, particularly women, are likely to be , said Jennifer Tolbert, deputy director of the Program on Medicaid and the Uninsured at KFF, a health information nonprofit that includes Ńîšóĺú´ŤĂ˝Ň•îl Health News. For Kelley and others, the work requirements will create barriers to keeping their coverage, Tolbert said. Many could lose Medicaid as a result, putting their physical and financial health at risk.

Starting next January, some 20 million low-income Americans in 42 states and Washington, D.C., will need to meet the activity requirements to gain or keep Medicaid health coverage.

Alabama, Florida, Kansas, Mississippi, South Carolina, Tennessee, Texas, and Wyoming didn’t expand their Medicaid programs to cover additional low-income adults under the Affordable Care Act, so they won’t have to implement the work rules.

The nonpartisan Congressional Budget Office predicts the work rules will result in at least 5 million fewer people with Medicaid coverage over the next decade. Work rules are the largest driver of coverage losses in the GOP budget law, which slashes nearly $1 trillion to offset the costs of tax breaks that mainly benefit the rich and increase border security, .

“We’re talking about saving money at the expense of people’s lives,” said Jane Tavares, a gerontology researcher at the University of Massachusetts Boston. “The work requirement is just a tool to do that.”

Department of Health and Human Services spokesperson Andrew Nixon said requiring “able-bodied adults” to work ensures Medicaid’s “long-term sustainability” while safeguarding it for the vulnerable. Exempt are people with disabilities, caregivers, pregnant and postpartum individuals, veterans with total disabilities, and others facing medical or personal hardship, Nixon told Ńîšóĺú´ŤĂ˝Ň•îl Health News.

Medicaid expansion has provided a lifeline for middle-aged adults who otherwise would lack insurance, according to . Medicaid covers 1 in 5 Americans ages 50 to 64, giving them access to health coverage before they qualify for Medicare at age 65.

Among women on Medicaid, those ages 50 through 64 are more likely to face challenges keeping their coverage than their younger female peers and are likely to have a greater need for health care services, Tolbert said.

These middle-aged women are less likely to be working the required number of hours because many serve as family caregivers or have illnesses that limit their ability to work, Tolbert said.

Tavares and other researchers found that of the total Medicaid population is considered “able-bodied” and not working. This group consists largely of women who are very poor and have left the workforce to become caretakers. Among this group, 1 in 4 are 50 or older.

“They are not healthy young adults just hanging out,” the researchers stated.

Plus, making it harder for people to maintain Medicaid coverage “may actually undermine their ability to work” because their health problems go untreated, Tolbert said. Regardless, if this group loses coverage, their chronic health conditions will still need to be managed, she said.

Adults often start wrestling with health issues before they’re eligible for Medicare.

If older adults don’t have the means to pay to address health issues before age 65, they’ll ultimately be sicker when they qualify for Medicare, costing the program more money, health policy researchers said.

Many adults in their 50s or early 60s are no longer working because they’re full-time caregivers for children or older family members, said caregiver advocates, who refer to people in the group as “the sandwich generation.”

The GOP budget law does allow some caregivers to be exempted from the Medicaid work rules, but the carve-outs are “very narrow,” said Nicole Jorwic, chief program officer for the group Caring Across Generations.

She worries that people who should qualify for an exemption will fall through the cracks.

“You’re going to see family caregivers getting sicker, continuing to forgo their own care, and then you're going to see more and more families in crisis situations,” Jorwic said.

Paula Wallace, 63, of Chidester, Arkansas, said she worked most of her adult life and now spends her days helping her husband manage his advanced cirrhosis.

After years of being uninsured, she recently gained coverage through her state’s Medicaid expansion, which means she’ll have to comply with the new work requirements to keep it. But she’s having a hard time seeing how that will be possible.

“With me being his only caregiver, I can’t go out and work away from home,” she said.

Wallace’s husband receives Social Security Disability Insurance, she said, and the law says she should be exempt from the work rules as a full-time caregiver for someone with a disability.

But federal officials have yet to issue specific guidance on how to define that exemption. And experience from Arkansas and Georgia ― the only states to have run Medicaid work programs ― shows that many enrollees struggle to navigate complicated benefits systems.

“I’m very concerned,” Wallace said.

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Most of the lawyers work either for the Department of Justice or for disability rights agencies that Congress set up in every state decades ago. Many of the Justice Department lawyers quit in 2025 after being reassigned to other duties, their supporters say. And Trump budget officials proposed deep cuts to federal grants supporting the state-based legal groups.

People with disabilities have the right to live in their communities if possible. Federal laws and court decisions say they may attend school, work jobs, and go to restaurants, movie theaters, and other public places. If they can find lawyers, they can file legal challenges when those rights are denied.

The federally funded attorneys quietly work to ensure the U.S. lives up to promises made by the Americans with Disabilities Act and other laws, said Alison Barkoff, a health law professor at George Washington University.

“I think many families of people with disabilities, or even many people with disabilities themselves, don’t hear about it until they Google, ‘Where can I get help?’” said Barkoff, who helped lead such efforts under Presidents Joe Biden and Barack Obama.

The attorneys’ goals include ensuring that people with disabilities have the services they need to live in their own homes, instead of having to move into nursing homes or other types of institutions, Barkoff said.

“These are people who, if these supports are ripped away, are going to have to leave their communities and their families, at a higher cost for taxpayers,” she said.

The state-based disability rights groups are known as “protection and advocacy” organizations. Most of them are nonprofit groups.

Congress approved the federally financed system in the 1970s after TV journalist Geraldo Rivera in a New York institution for people with mental and intellectual disabilities, revelations that ignited a national outcry.

President Donald Trump proposed cutting the system’s federal funding from $148 million to $69 million for fiscal year 2026, according to the National Disability Rights Network, which represents the state-based groups.

Appropriations committees in the U.S. House and Senate have recommended Congress maintain funding at the previous level. But advocates for the agencies worry that even if Congress maintains current support, the administration will try again to slash their support in future years. “It definitely would put people in our communities in harm’s way,” said Marlene Sallo, the national network’s executive director.

White House officials declined to comment on why the Trump administration proposed the deep cuts.

Isaac Schreier’s family can attest to the value of the state-based legal groups.

Isaac, 7, lives in Ankeny, Iowa. He has a rare condition called osteogenesis imperfecta, also known as brittle bone disease. The condition has caused about 60 bone fractures, including in his limbs, spine, and skull. It can cause intense pain and leave him unable to walk.

At times, Isaac’s disability is practically invisible, said his father, Jake Schreier. Unless he has recently suffered a broken leg bone, he walks well. “But he tires much more quickly than you or I would.”

Isaac’s doctor said he needed a special wheelchair that could be adjusted to put him in different positions depending on which bones were broken. But the private insurer that manages his Medicaid coverage declined to pay for the $3,500 wheelchair. “They required proof that it was a permanent and long-standing condition,” Jake Schreier said. “We were very frustrated.”

Schreier appealed the denial but lost. A nurse at a specialty clinic then recommended he reach out to Disability Rights Iowa, a federally funded protection and advocacy group that had helped other families in similar straits.

The group linked Schreier with two of its attorneys, who filed a new appeal. The lawyers wrote a detailed letter explaining why Isaac was legally entitled to the new wheelchair, and they cited specific Iowa codes and court precedents.

The insurer wound up paying for Isaac’s special wheelchair.

The chair allows Isaac to participate in school and community activities even when he has broken bones. “It’s absolutely night and day. I can’t imagine a world where we didn’t have it,” his father said.

Isaac may again need people like the disability rights lawyers to fight for him, so he won’t be shunted away from society, Schreier said. “We’re really trying to keep as many doors open as possible for him.”

The threat to the state-based groups’ funding comes as the more people with mental illness or addictions into institutions.

David Hutt, deputy executive director for legal services at the National Disability Rights Network, noted that the groups have legal authority to go into facilities where people with disabilities live, to check conditions and treatment. Those facilities include state institutions and privately owned nursing homes.

More Americans could wind up living in such settings if Trump succeeds in his quest to institutionalize people with mental illness who are living on the streets, Hutt said.

At the same time, states are facing cuts in federal contributions to Medicaid, the public health coverage program for people with low incomes or disabilities. In response, they may be tempted to reduce Medicaid coverage of , many of which are considered optional under federal law, Hutt said. If that happens, “you’re going to get increased institutionalization, which actually costs more,” he said.

Disability rights organizations often have stepped in when states failed to provide care and services that people with disabilities are entitled to. So have lawyers from the Justice Department’s civil rights division.

For example, Disability Rights Iowa filed a lawsuit in 2023 alleging the state failed to provide proper mental health resources for children on the Medicaid program. The state that advocates said could bring “radical change” to the system.

In 2021, the Justice Department that their lack of support for community services meant too many people with intellectual disabilities had to live in facilities. State officials vowed to do better.

Since Trump returned to office, many of the Justice Department’s most experienced disability rights lawyers have taken buyouts or been reassigned to other areas, said Jennifer Mathis, a former top administrator at the Justice Department under Biden. “There’s really skeleton staffing at this point,” said Mathis, now deputy director of , which advocates for rights of people with mental disabilities.

The overall civil rights division is down to about 300 people, fewer than half the number it had under Biden, Mathis said.

The civil rights division’s new director, Harmeet Dhillon, in April that more than 100 attorneys had left the division, but that they didn’t support Trump’s priorities. “The job here is to enforce the federal civil rights laws, not woke ideology,” she told Beck.

In a statement to Ńîšóĺú´ŤĂ˝Ň•îl Health News, Dhillon said the division continues to be “a vocal and active advocate for Americans with disabilities.”

Dhillon noted the department recently over complaints that the ride-hailing service was turning away customers with service dogs or wheelchairs; has secured agreements with and to improve treatment of imprisoned people with disabilities; and over allegations of failing to provide proper accommodations for people with disabilities.

The department declined to comment on the record about the number of attorneys it has working on disability rights issues. However, “civil rights warriors,” including lawyers, to join the civil rights division.

Jake Schreier, the Iowa parent, hopes the issue will be worked out nationally. “I really can’t believe this is anything that would be partisan,” he said.

Ńîšóĺú´ŤĂ˝Ň•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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Barbara, 82, has chronic obstructive pulmonary disease, so a portable oxygen tank accompanies her everywhere. Spinal stenosis limits her mobility, necessitating the walkers and wheelchairs and considerable help from her husband, Dennis, who serves as her primary caregiver.

“I know I need hearing aids,” Barbara added. “My hearing is horrible.” She acquired a pair a few years ago but rarely uses them.

Dennis Meade, 86, is more mobile, despite arthritis pain in one knee, but contends with his own hearing problems. Similarly dissatisfied with the hearing aids he once bought, he said, “I just got to the point where I say, ‘Talk louder.’”

But if you ask either of them a question included on a recent University of Michigan survey — “Do you identify as having a disability?” — the Meades answer promptly: No, they don’t.

Disability “means you can’t do things,” Dennis said. “As long as you can work with it and it’s not affecting your life that much, you don’t consider yourself disabled.”

Their daughter Michelle Meade, a rehabilitation psychologist and the director of the Center for Disability Health and Wellness at the university, accompanies her parents to medical appointments and tends to roll her eyes at their reluctance to acknowledge needing support.

Working with other researchers on the recent national poll has shown her how often older adults feel that they are not disabled despite ample evidence to the contrary.

The nearly 3,000 Americans aged 50 and older and found that only a minority — fewer than 18% of participants over 65 — saw themselves as having a disability.

Yet their responses to the that the Census Bureau’s American Community Survey uses to track disability rates told a different story.

The survey asks whether respondents have difficulty seeing or hearing, limitations in walking or climbing stairs, difficulty concentrating or remembering, trouble dressing or bathing, difficulty working, or problems leaving the home.

In the university’s survey, about a third of those aged 65 to 74 reported difficulty with one or more of those functions. Among those over 75, the figure was more than 44%.

Moreover, when respondents were asked about several additional health conditions that would require accommodations under the Americans with Disabilities Act, including respiratory problems or speech disorders, the proportion climbed even higher. Half the 65-to-74 group reported disabilities, as did about two-thirds of those over 75.

Yet only a sliver — fewer than 1 in 5 — of older adults had ever received an accommodation from their health care providers to which they are legally entitled under the ADA.

Even among the small minority who identified as disabled, only a quarter had asked for an accommodation (though a third received one, whether they asked or not).

“It’s a familiar story,” said Megan Morris, a rehabilitation researcher at NYU Langone Health and director of the Disability Equity Collaborative. When it comes to the way people describe themselves, “many people still feel like ‘disability’ is a dirty word,” she said.

It’s almost an American value to decline to seek help, even when the law requires that it be available, Michelle Meade added. Faced with a disability, she said, “we’re supposed to toughen up and battle through it.”

That may be particularly true among older Americans whose attitudes formed before the landmark ADA became law in 1990, or even before the 50-year-old Individuals With Disabilities Education Act, which guaranteed access to public education.

“It’s going to be hard for that older generation,” Morris said. “Disability was something that was locked away. Younger folks are more open to seeing disability as being part of a community.”

In the University of Michigan survey, for instance, among people over 65 who had two or more disabilities, about half identified as a person with a disability. In the younger cohort, aged 50 to 64, it was 68%.

Why does that matter? “It greatly assists in health care settings if you disclose a disability and know to request an accommodation and support,” said Anjali Forber-Pratt, the research director at the American Association of Health and Disability.

Such accommodations “can make a stressful situation easier,” she added. They include mammography and X-ray machines that allow patients to remain seated, scales that wheelchair users can roll onto, examination tables that rise and lower so that patients don’t have to step onto a footstool and swivel around.

Health care providers may also offer amplification devices for people with hearing loss, as well as magnifiers and large print materials for the visually impaired. Buildings themselves must be accessible. Practices can send a staff member with a wheelchair to help patients traverse long distances.

Even with a disability parking placard, “you hike in, you wait for the elevator, you hike to the office,” said Emmie Poling, 75, a retired teacher in Menlo Park, California.

Because of arthritis and spinal stenosis, “I can’t walk with an upright posture for more than a few minutes” without pain, she said. “I basically live on Tylenol.” Yet when she makes an appointment and the scheduler asks if she will need assistance, Poling replies that she won’t.

“My personal voice says, ‘Come on, you can do it,’” she said.

Identifying as a person with a disability provides other benefits, advocates say. It can mean avoiding isolation and “being part of a community of people who are good problem-solvers, who figure things out and work in partnership to do things better,” Meade said.

Government programs and private organizations like the , , and the help connect people with services and supports in their communities.

Several studies have found, too, that patients who identify as disabled have , , and a greater sense of “” than disabled people who don’t.

For years, despite a lifetime of surgeries for congenitally dislocated hips, as well as joint replacements and cancer treatment, Glenna Mills, an artist in Oakland, California, told herself that she was not disabled.

“I suffered a lot by denying that I couldn’t walk very far,” she recalled. Although walking caused pain in her knees, hips, and shoulders, “I didn’t want people to see me as someone who couldn’t keep up,” she added.

But about 10 years ago, “I stopped worrying about that,” said Mills, 82. “I was more willing to say, ‘I can’t do that activity. I can’t walk that far.’” She bought a scooter that allowed her to take walks with her husband and dog, and to spend time in museums. “I’m happier now,” she said.

More often, older Americans resist a label that could help improve their care. Even those who do request accommodations may find that enforcement of the ADA remains spotty, in part because patients don’t always report violations.

The Meades, after years of pleading from their children, have made appointments to see an audiologist about new hearing aids.

But Poling intends to struggle on without seeking or accepting assistance. “I know that point will come,” she said. “I’ll attempt to surrender as gracefully as possible, given my personality.”

Until then, she said, “the mental picture that’s acceptable to me is not wanting to look like I’m disabled.”

The New Old Age is produced through a partnership with .

Ńîšóĺú´ŤĂ˝Ň•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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Brader, de 27 años y residente de Bloomington, Indiana, tiene un marcapasos y una enfermedad dolorosa en las articulaciones. Además, sufre una lesión en la columna que le fusionó las vértebras del cuello, lo que le impide girar la cabeza.

La agencia estatal de Medicaid considera a Brader como “médicamente frágil”, lo que le da acceso a un conjunto ampliado de beneficios, como terapia física.

Pero nuevas reglas federales exigirán que más de 18 millones de personas beneficiarias de Medicaid en todo el país demuestren, a partir de 2027, que trabajan, hacen voluntariado o estudian al menos 80 horas al mes para mantener su cobertura.

Brader está exenta mientras siga siendo considerada médicamente frágil.

Pero ante la falta de directrices claras a nivel federal, los estados deben llegar a un acuerdo sobre cómo definir la fragilidad médica, una decisión de gran impacto que podría hacer que muchas personas pierdan el acceso a Medicaid, según funcionarios estatales, defensores del consumidor y expertos en políticas de salud.

“Estoy aterrada”, dijo Brader. “Ya he luchado mucho para conseguir esta atención médica”.

Mucho en juego

La ley One Big Beautiful Bill Act del presidente Donald Trump recortará casi $1.000 billones de dólares a Medicaid a lo largo de la próxima década. Buena parte de esos ahorros proyectados provendrían de dejar de cubrir a quienes no califiquen bajo las nuevas reglas laborales.

Esos recortes ayudan a financiar otras prioridades del Partido Republicano, como más seguridad fronteriza y recortes de impuestos que benefician sobre todo a personas con altos ingresos.

Legisladores conservadores han argumentado que Medicaid —el programa de seguro médico del gobierno para personas de bajos ingresos o con discapacidades— ha crecido demasiado, especialmente tras su expansión a más personas adultas de bajos ingresos bajo la Ley de Cuidado de Salud a Bajo Precio (ACA, por sus siglas en inglés). También afirman que exigirles trabajar a los beneficiarios es una medida de sentido común.

La nueva ley fiscal y presupuestaria de Trump ofrece excepciones a varias personas que podrían tener dificultades para cumplir con las reglas laborales, incluyendo aquellas consideradas “médicamente frágiles”. La ley define ciertas condiciones como fragilidad médica, por ejemplo, ceguera, discapacidad y adicciones. Pero no incluye muchas otras.

En su lugar, la norma exime a quienes tengan una “condición médica seria o compleja”, un término cuya interpretación puede variar según el estado.

Funcionarios estatales señalan que necesitan más claridad para asegurar que las personas que no pueden trabajar por razones de salud mantengan su derecho a Medicaid. También les preocupa que, incluso con una definición clara, muchas personas enfrenten el reto burocrático de tener que probar constantemente  que son médicamente frágiles, lo cual es difícil si no se puede acceder a una atención médica adecuada.

“Hay mucho en juego”, dijo Kinda Serafi, socia de la firma consultora Manatt Health.

Los nuevos requisitos laborales afectarán a beneficiarios de Medicaid en 42 estados y en Washington, DC. Ocho estados —Alabama, Florida, Kansas, Mississippi, Carolina del Sur, Tennessee, Texas y Wyoming— no expandieron sus programas de Medicaid para incluir a más personas adultas de bajos ingresos, por lo que no tendrán que implementar estas reglas.

Según la Oficina de Presupuesto del Congreso (Congressional Budget Office), una entidad no partidista, se espera que estas reglas laborales de Medicaid sean el en la próxima década.

El 44% de las personas adultas cubiertas por los programas de Medicaid en estados que lo ampliaron tienen , según KFF.

Un desafío para los estados

Las agencias estatales de Medicaid se apresuran a implementar las nuevas reglas con poca orientación del Departamento de Salud y Servicios Humanos de Estados Unidos (HHS, por sus siglas en inglés) que aún no ha emitido directrices específicas. Andrew Nixon, vocero de la agencia, dijo que la definición federal de “médicamente frágil” se aclarará el próximo año.

En última instancia, serán los estados los que tengan que decidir quién está lo suficientemente enfermo como para quedar exento de los requisitos laborales. Y no será fácil para el personal estatal ni para los sistemas informáticos hacer ese seguimiento.

Cada año, los sistemas estatales de elegibilidad evalúan a millones de personas solicitantes para determinar si califican para Medicaid y otros programas gubernamentales. Ahora, esos mismos sistemas también tendrán que verificar si personas nuevas o ya inscritas cumplen con los requisitos laborales.

Jessica Kahn, socia en la firma consultora McKinsey & Co., ha instado a los estados a comenzar desde ya a planear cómo adaptar sus sistemas para verificar el estatus laboral. Los estados pueden hacer “muchísimo” incluso sin esperar directrices federales, dijo Kahn —quien fue funcionaria federal de Medicaid— durante una reciente audiencia de asesoría sobre el programa. “El tiempo se acaba”.

Las personas encargadas de Medicaid a nivel estatal evalúan este reto.

“La fragilidad médica es algo muy complejo”, dijo Emma Sandoe, directora de Medicaid en Oregon, durante un panel reciente. Las condiciones que impiden trabajar, como los trastornos de salud mental, son difíciles de demostrar, explicó.

Un estado podría intentar usar información de los expedientes médicos de una persona, por ejemplo, para determinar si es médicamente frágil. Pero esa información puede no reflejar con claridad la salud de alguien, especialmente si no tiene acceso regular a servicios médicos.

Es una tarea difícil para sistemas de elegibilidad que históricamente no han tenido que revisar registros médicos para evaluar solicitudes, señaló Serafi, de Manatt Health.

“Esto es completamente nuevo para los sistemas de inscripción, y simplemente no están preparados”, añadió.

Grupos de cabildeo que representan a compañías privadas de seguros médicos que administran Medicaid en varios estados también han pedido a las autoridades federales que definan claramente qué significa ser médicamente frágil, para que se aplique de manera uniforme.

En una carta enviada el 3 de noviembre, las organizaciones Planes de Salud Medicaid de Estados Unidos (MHPA, en inglés) y la Asociación de Planes Afiliados a la Comunidad (ACAP, en inglés) recomendaron que se permita a las personas solicitantes calificar para la exención simplemente al indicar en su solicitud que tienen condiciones que las hacen médicamente frágiles. Según las dos organizaciones, implementar con éxito estas exenciones será “crucial” dada la “gravedad de los riesgos para la salud que implica perder cobertura” para estas poblaciones.

Algunos funcionarios estatales temen que haya consecuencias imprevistas por estas reglas laborales para personas con enfermedades crónicas.

Jennifer Strohecker, quien recientemente renunció como directora de Medicaid en Utah, reiteró la gravedad de este asunto, especialmente para personas con diabetes afiliadas a Medicaid.

Explicó que, si bien pueden llevar una vida funcional con insulina, eso podría cambiar si pierden la cobertura por no cumplir con los requisitos laborales.

Actualmente, el hecho de que alguien sea considerado médicamente frágil depende en gran medida del lugar donde viva.

Por ejemplo, en Arkansas, las personas deben indicar en sus solicitudes de Medicaid si tienen una discapacidad, son ciegas o necesitan ayuda para realizar actividades diarias.

Según Gavin Lesnick, vocero del Departamento de Servicios Humanos de Arkansas, aproximadamente el 6% de las 221.000 personas inscritas en el programa de expansión de Medicaid del estado se consideran médicamente frágiles.

En West Virginia, el estado acepta la designación de fragilidad médica cuando una persona la reporta por cuenta propia.

En Dakota del Norte, el proceso es más estricto. Quienes solicitan deben completar un cuestionario sobre su salud y presentar documentación adicional, como notas del historial médico y planes de tratamiento. Más de la mitad de las solicitudes fueron rechazadas el año pasado, según Mindy Michaels, vocera del Departamento de Salud y Servicios Humanos.

La Administración de Servicios Familiares y Sociales de Indiana, que gestiona Medicaid en ese estado, se negó a ofrecer entrevistas y dijo que no podía comentar sobre casos individuales, como el de Brader.

Brader teme que la burocracia adicional la haga perder otra vez su cobertura de Medicaid. Contó que en 2019 fue expulsada temporalmente del programa por no cumplir con las reglas laborales del estado, cuando Indiana determinó que su trabajo como estudiante no contaba como empleo.

“Siempre que he intentado recibir ayuda del estado de Indiana, ha sido una pesadilla burocrática”, dijo.

Mientras los estados esperan una guía federal, Kristi Putnam —miembro del conservador Instituto Cicero y ex secretaria del Departamento de Servicios Humanos de Arkansas— dijo que, incluso si un estado crea una lista extensa de condiciones que califican como fragilidad médica, siempre habrá que poner un límite.

“No se puede crear una política de exenciones que lo cubra todo”, afirmó.

Ńîšóĺú´ŤĂ˝Ň•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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The 27-year-old resident of Bloomington, Indiana, has a pacemaker and a painful joint disease. She also has fused vertebrae in her neck from a spinal injury, preventing her from turning her head.

Indiana’s Medicaid agency currently considers Brader “medically frail,” giving her access to an expanded set of benefits, such as physical therapy.

New federal rules will require more than 18 million Medicaid enrollees nationwide to show they’re working, volunteering, or going to school for 80 hours a month starting in 2027 to keep their coverage. Brader is exempt as long as she’s deemed medically frail.

But lacking sufficient federal guidance, states are wrestling with how to define medical frailty — a consequential decision that could cut Medicaid coverage for many people, said state officials, consumer advocates, and health policy researchers.

“It’s terrifying,” Brader said. “I already have fought so hard to get my health care.”

‘Incredibly High’ Stakes

President Donald Trump’s One Big Beautiful Bill Act slashes nearly $1 trillion from Medicaid over the next decade, with much of the savings projected to come from no longer covering those who don’t qualify under the new work rules. Those spending cuts help offset the costs of GOP priorities, such as extra border security and tax cuts that mainly benefit the wealthy.

Conservative lawmakers have argued that Medicaid, the government health insurance program for people with low incomes or with disabilities, has grown too large and expensive, especially in the wake of its expansion to more low-income adults under the Affordable Care Act. They also say that requiring participants to work is common sense.

The work rules in Trump’s tax-and-spending law offer exemptions for several groups who might struggle to meet them, including people deemed “medically frail.” The law spells out certain “medically frail” conditions such as blindness, disability, and substance use disorder. But it does not list many others.

Instead, the law exempts those with a “serious or complex medical condition,” a term whose interpretation could vary by state.

State officials say they need more clarity to ensure that people who cannot work for health reasons retain rightful access to Medicaid. They also worry that, even with a clear definition, people will face the onerous task of having to regularly vouch for being medically frail, which is a challenge without reliable access to medical care.

“The stakes are incredibly high,” said Kinda Serafi, a partner at consulting firm Manatt Health.

The new work requirements will affect Medicaid recipients in 42 states and Washington, D.C. Eight states — Alabama, Florida, Kansas, Mississippi, South Carolina, Tennessee, Texas, and Wyoming — did not expand their Medicaid programs to cover additional low-income adults, so they won’t have to implement the work rules.

The Medicaid work rules are expected to be the over the next decade, according to the nonpartisan Congressional Budget Office.

Forty-four percent of all adults covered by states’ expanded Medicaid programs , according to KFF.

A Challenge for States

State Medicaid agencies are scrambling to implement the rules with little direction from the U.S. Department of Health and Human Services, which has yet to issue specific guidance. Federal officials will clarify the “medically frail” definition next year, said Andrew Nixon, an agency spokesperson.

Ultimately, states will have to decide who is unhealthy enough to be exempt from work rules. And it won’t be easy for state workers and their computer systems to track.

Every year, state eligibility systems screen millions of applicants to check if they qualify for Medicaid and other government programs. Now, these same systems must screen applicants and existing enrollees to determine whether they meet the new work rules.

Jessica Kahn, a partner at consulting firm McKinsey & Co., has urged states to start planning how to adapt eligibility systems to verify work status. States can do a “tremendous amount” of work without direction from the federal government, said Kahn, a former federal Medicaid systems official, who spoke during a recent Medicaid advisory panel hearing. “Time is a-wasting already.”

State Medicaid directors are pondering the challenge.

“Medical frailty gets so complex,” Emma Sandoe, Oregon’s Medicaid director, said during a recent panel discussion. Conditions that can keep people from working, such as mental health disorders, can be hard to prove, she said.

A state might try to use data pulled from a person’s health records, for instance, to determine medical frailty. But information from a patient’s chart may not paint a clear picture of someone’s health, especially if they lack regular access to medical care.

It’s a tall order for eligibility systems that historically have not had to scrape medical records to screen applicants, said Serafi of Manatt Health.

“That is an incredibly new thing that eligibility enrollment systems are just not fluent in at all,” Serafi said.

Lobbying groups for the private health insurance companies that help run Medicaid in many states also have urged federal regulators to clearly define medical frailty so it can be applied uniformly.

In a Nov. 3 letter to federal officials, the Medicaid Health Plans of America and the Association for Community Affiliated Plans advocated for allowing enrollees to qualify for the exemption by saying on their applications that they have conditions that make them medically frail. Successfully implementing exemptions for the medically frail will be “crucial” given the “severe health risks of coverage loss for these populations,” the groups said.

Some state officials worry about unintended consequences of the work rules for people with chronic conditions.

Jennifer Strohecker, who recently resigned as Utah’s Medicaid director, reiterated the high stakes, especially for those with diabetes on Medicaid. They may be very healthy and functional with insulin, but if they fail to complete the work requirements, that may change, Strohecker said during a recent Medicaid advisory hearing.

Whether someone is deemed medically frail already depends heavily on where they live.

For example, in Arkansas, people indicate on their Medicaid applications that they’re disabled, blind, or need help with daily living activities.

Approximately 6% of the roughly 221,000 people enrolled in Arkansas’ Medicaid expansion program are deemed medically frail, according to Gavin Lesnick, a spokesperson for the Arkansas Department of Human Services.

In West Virginia, the state accepts a medical frailty designation when an applicant self-reports it.

The burden of proof is higher in North Dakota. Applicants there must answer a questionnaire about their health and submit additional documentation, which may include medical chart notes and treatment plans. More than half of applicants were denied last year, according to Health and Human Services Department spokesperson Mindy Michaels.

Indiana’s Family and Social Services Administration, which runs its Medicaid program, declined an interview and said it could not comment on individual cases, like Brader’s.

Brader worries the additional red tape will cause her to lose Medicaid again. She said she was temporarily kicked off the program in 2019 for failing to meet the state’s work rules when Indiana said her work-study job didn’t count as employment.

“Anytime I have tried to receive help from the state of Indiana, it has been a bureaucratic nightmare,” she said.

As states await federal guidance, Kristi Putnam, a senior fellow at the conservative Cicero Institute and former secretary of the Arkansas Department of Human Services, which oversees the state Medicaid program, said even if a state creates an extensive list of qualifying “medically frail” conditions, the line must be drawn somewhere.

“You can’t possibly create a policy for exemptions that will catch everything,” she said.

Ńîšóĺú´ŤĂ˝Ň•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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A reporter at Just the News shared our article about a man whose organs were nearly harvested while he was still alive:

Disinformed consent is standard operating procedure in the organ donation industry. And much of medicine. "The sisters said hospital staffers told them the movements were involuntary."

— Greg Piper (@gregpiper)

— Greg Piper, Washington, D.C.

Too Close a Call With Organ Donation

When I was a third-year med student doing a rotation on the trauma surgery team, we had a patient in the surgical intensive care unit who had arrived 12 hours earlier with bullet holes in his abdomen. We worked to stabilize him all night; the next day, he was still alive. 

The team determined, however, that although his body was alive, he was likely brain-dead and a candidate for organ donations (“A Surgical Team Was About To Harvest This Man’s Organs — Until His Doctor Intervened,” Sept. 12). 

As we prepared for him to become a donor, I noticed he had a bit of movement. Of course, I was the unknowing third-year med student, so my comments were essentially deemed a nuisance, at best, to the team. (I was, by the way, already a globally recognized researcher in a field distant from trauma surgery.)

Nevertheless, after checking on the patient, I told one of the surgeons, “I think he was trying to communicate with us.”

I was told it was just spinal reflex and I didn’t know what I was looking at.

I couldn’t shake the feeling. I was deeply concerned that I knew what I saw, and it seemed like communication. After our rounds, I went back up to the patient’s bedside, stood over him, and simply said, “Are you able to hear me?”

With a tube in his trachea, stopping any air from entering or exiting (required to make sounds with the vocal cords), he attempted to communicate something in response. The poor guy had an endotracheal tube and was on a ventilator, but because he was given a diagnosis of being brain-dead, he was not being provided with appropriate pain meds and was in and out of consciousness — as best as I could tell. 

I asked him again if he could hear me, and again he tried to communicate with the tube in his throat. It was clear he was absolutely not brain-dead.

I ran and got the team. They evaluated him again — after having already spoken in front of both him and his family about harvesting his organs. This time, the surgeon made a more thorough evaluation. It turned out that he was awake and aware. As they looked him over, they realized he didn’t have bullet holes only in his abdomen; he had a bullet hole through the back of his skull, the bullet still lodged in his brain. During the exam, someone had lifted his head to discover a small, round pool of blood underneath. The bullet in his head went entirely unnoticed in the chaos of trying to stabilize his much more severe hemorrhages.

A CT scan showed the bullet clearly, lodged in the middle of his brain. The neurosurgery team did a procedure to reduce the swelling and pressure in his skull, and he sprang back to life.

The young man, surely a victim of gang violence in South Atlanta, began to interact almost normally with his family over the coming days. For his family, it was almost a rebirth of their child. He had heard the entire conversation about harvesting his organs but could do essentially nothing. It turned out his brain death was documented when he was still under anesthesia, masking his conscience and alertness that would eventually return.

Unfortunately, after an elated two or three days, the man ultimately succumbed to his brain injury.

Still, I will never, ever forget how terrible that experience must have been for him, and, honestly, I don’t know what would have happened if some “naive” third-year med student hadn’t pushed to get the considerably busier surgery team to fully recognize what was happening with their patient.

I deeply appreciate your writing, and I hope it is raising significant awareness.

And I say this as someone with an immediate family member on multiple transplant lists: While I want desperately for lists to move faster, it should never happen at the expense of providing the complete and full dignity that every life deserves. 

— Michael J. Mina, Boston

A radiologist in Denver also posted his thoughts about the article on the social platform X:

This is very rare in the world of transplant surgery. But it should be "never", rather than "rare".

— Paul Hsieh (@PaulHsieh)

— Paul Hsieh, Denver

Speaking for Kids With Disabilities

I read the article “Parents Fear Losing Disability Protections as Trump Slashes Civil Rights Office” (Sept. 15) with a renewed sense of purpose. Efforts to dismantle the U.S. Department of Education may be imprudent at best, with little or no consideration for the potential that lies within all of us. I know, because I became a recipient of its special education services after flipping over on my three-wheel motorcycle and landing on my head with the bike over me. I was barely 18 years old and not wearing a helmet. I was in a coma for a week and remained in an acute care hospital for a month. I sustained a severe traumatic brain injury — or, to be more precise, a severe cerebral contusion.

I wish the architects of this federal dismantling could know that I received rehabilitation therapy for over a year and received services through a special education program for more than six years before I graduated with a four-year bachelor’s degree from San Diego State University. I continued on to graduate school and earned two master’s degrees from the University of Southern California.

I established a 30-year career — starting as a lobbyist for the National Association of Social Workers in Washington, D.C., before returning to my home state to finish my career as a research scientist for the California Department of Public Health’s Maternal and Child Health Division. I worked there for 16 years before my retirement in 2020.

We — as children with disabilities — have much to offer to society that cannot be foreseen when we are young. I am the product of dedicated care by my therapists and teachers. This is what I believe the current president and elected officials across the country need to understand. We can be productive citizens when given the chance to thrive.

— Brason Lee, Sacramento, California

A Democratic member of Congress weighs in on X:

Disabled kids are facing great challenges in their schools, and the dismantling of the Department of Education will only worsen these struggles. It is vital we support our students of all backgrounds.

— Grace Meng (@Grace4NY)

— Grace Meng, Queens borough of New York City

A Hole in ‘Big Loopholes’?

The article “Big Loopholes in Hospital Charity Care Programs Mean Patients Still Get Stuck With the Tab” (Sept. 25) by Michelle Andrews had one glaring omission: The hospitals are supported by government funding for charity care, but private practice providers — such as the specialists in emergency medicine, anesthesiology, and radiology who were mentioned — are not. Do you expect those providers to work for free? I think, to be fair to doctors, there should have been a mention of that in the article.

— Roger Broome, Galena, Ohio

A science writer in New York shared her thoughts on X about our coverage of Trump administration policies:

These clinics were already stretched thin before the new guidance. That seems unlikely to change given the major staffing cuts at HRSA, which directs funding to community clinics and other HHS programs. H/t and at

— lauren schneider (@laur_insider)

— Lauren Schneider, New York City

When HRSA Hurts, Nursing Suffers

The Health Resources and Services Administration, or HRSA, is vitally important to building and maintaining the strength of the pipeline of new nurses and other clinicians entering our health care workforce. With a growing health care shortage across the country, it’s incredibly important that HRSA be maintained and strengthened to meet the growing and more complicated health care challenges of tomorrow (“Deep Staff Cuts at a Little-Known Federal Agency Pose Trouble for Droves of Local Health Programs,” Aug. 1).

One of HRSA’s most important responsibilities is managing Nursing Workforce Development Programs under Title VIII of the Public Health Service Act. These from education to practice, recruitment, and retention, particularly in rural and underserved communities. As both a nurse and nurse educator myself, I’ve seen how, for decades, Title VIII programs have strengthened the pipeline by covering scholarships and education to support registered nurses, advanced practice nurses, and nurse educators.

As the U.S. population rapidly ages and develops increasingly complex health care needs, we must ensure we have a robust workforce equipped to provide high-quality care in every community. Unfortunately, the Bureau of Labor Statistics projects an average each year from 2024 to 2034. Complicating this issue, faculty shortages, limited clinical sites, and capacity constraints forced nursing schools to last year alone.

Our country must do more to graduate enough students to close these gaps. Maintaining funding and staffing for HRSA is essential to sustain a robust health care workforce and ensure patients’ access to care nationwide.

Policymakers must protect and fully appropriate HRSA in the 2026 budget and beyond. There are countless passionate, smart, and dedicated learners out there ready to step into the roles of nurse and nurse educator. We must protect HRSA to open pathways for them to get there.

— Patty Knecht, chief nursing officer of /, Downingtown, Pennsylvania

A Michigan reader expresses his opinion succinctly on social media:

Make America Ill Again

— Paul Hughes-Cromwick (Pooge) (@cromwick)

— Paul Hughes-Cromwick, Ann Arbor, Michigan

Keeping PACE With Vulnerable Seniors

Elder homelessness is one of the clearest symptoms of our broken senior care system, as highlighted in the recent article “Health Care Groups Aim To Counter Growing ‘National Scandal’ of Elder Homelessness” (Aug. 18). Today, too many seniors are walking a tightrope, threatened to be tipped off balance when financial or medical issues arise.

This risk of homelessness is especially prevalent in rural communities, where older adults often have lower incomes, higher poverty rates, and greater prevalence of chronic illness. And while homelessness nationwide rose by less than 1% from , rural areas saw nearly a 6% increase — clear evidence that rural community members are being left behind by our current system.

Thankfully, the Program of All-Inclusive Care for the Elderly, or PACE, is uniquely equipped to address these challenges. Often, rural PACE programs like ours encounter participants struggling to get through the winter without heat, living in homes with leaky roofs, or lacking safe wheelchair access. In these scenarios, we can authorize heating installation, arrange urgent repairs, or build ramps that make it possible for our participants to remain safely at home.

These are just a few of the many examples that demonstrate how far PACE providers can, and do, go to ensure our participants can stay in their homes. And, by addressing these issues early, the program is

To reduce housing instability among older adults, policymakers at both the state and federal levels should expand eligibility and ensure that PACE providers have the flexibility to act quickly when warning signs appear. By investing in PACE, we can reduce homelessness and build a stronger model for community-based care in America.

— Craig Worland, interim CEO and COO of , Erie, Pennsylvania

Saw mention of an idea on Facebook a couple of days ago and then read your PACE article about senior housing and felt compelled to share. Please pass along to your PACE colleagues and anyone else who can help make this possible. The idea was/is to convert the many closed malls, shopping centers, and big-box stores across the U.S. into affordable housing. Rather than leave them as empty eyesores, decaying and becoming havens for vermin and worse, rather than trying to find and fund land purchases and building from scratch, just think how many thousands of people could be housed! Some spaces could be reserved for essential services — groceries, drugstores, coffee shops, restaurants, salon/barber shops, laundry/dry cleaners, etc. Recreate nature with a walking path complete with live trees and plants, and paint the ceiling like the Wienermobile, where “the sky is always blue!” The possibilities are endless. Go for it! Thanks for the opportunity to share. I’ll be out here advocating and watching for this to blossom!

— Brenda Peters, Charlotte, North Carolina

Ńîšóĺú´ŤĂ˝Ň•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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In August, Bauer and her colleagues of 46 previous studies on Tylenol, autism, and attention-deficit/hyperactivity disorder. Many found no link between the drug and the conditions, while some suggested Tylenol might occasionally exacerbate other potential causes of autism, such as genetics.

Bauer, an epidemiologist at the University of Massachusetts-Lowell, and her team called for more judicious use of the drug until the science is settled.

On Monday, President Donald Trump stood beside Health and Human Services Secretary Robert F. Kennedy Jr. for what he called a “historic” announcement on autism. “If you’re pregnant, don’t take Tylenol, and don’t give it to the baby after the baby is born,” Trump said. “There are certain groups of people that don’t take vaccines and don’t take any pills that have no autism,” he added, without providing evidence. “They pump so much stuff into those beautiful little babies, it’s a disgrace.”

A released alongside the White House briefing cited Bauer’s analysis. But she was alarmed by Trump’s comments. If prenatal Tylenol has any association, which it may not, it would help account for only a fraction of cases, she said. Further, research has not deeply examined Tylenol risks in young children, refute a link between vaccines and autism.

Bauer worries such statements will cut both ways: People may put themselves at risk to avoid vaccines and Tylenol, the only safe painkiller for use during pregnancy. And she frets that scientists might outright reject her team’s measured concerns about Tylenol in a backlash against misleading remarks from Trump and other members of his “Make America Healthy Again” movement.

“I’m really concerned about how this message is going to play out,” she said. “It’s a sound-bite universe, and everyone wants a simple solution.”

Autism experts at the Centers for Disease Control and Prevention were neither consulted for the White House’s long-awaited autism announcement nor asked to review a draft of the findings and recommendations, CDC scientists told Ńîšóĺú´ŤĂ˝Ň•îl Health News, which agreed not to identify them because they fear retaliation.

“Typically, we’d be asked to provide information and review the report for accuracy, but we’ve had absolutely no contact with anyone,” one CDC researcher said. “It is very unusual.”

Trump and Kennedy promised this year that under their leadership the federal government would swiftly figure out what causes autism. Scientists who work in the field have been skeptical, noting that decades of research has shown that no single drug, chemical, or other environmental factor is strongly linked to the developmental disorder. In addition, both Trump and Kennedy the notion that childhood vaccines may cause autism.

Systemic changes, such as regulations on air pollution, which has been linked to asthma and developmental disabilities including autism, and assistance for parents of disabled children, could improve lives for far more Americans with autism and other conditions than by the Trump administration on Sept. 22, researchers say.

One federal action is to consider updating the label on Tylenol and to “encourage clinicians to exercise their best judgment in use of acetaminophen for fevers and pain in pregnancy by prescribing the lowest effective dose for the shortest duration.” The American College of Obstetricians and Gynecologists already recommends acetaminophen “as needed, in moderation, and after consultation with a doctor.”

‘Political Crusade’

Despite Kennedy’s many years of speaking about autism, he rarely cites credible or expert recommendations, Tager-Flusberg said. Instead, Kennedy , scientifically debunked theories linking vaccines to autism, despite published in peer-reviewed journals that .

At the Sept. 22 briefing, Trump said he spoke with Kennedy about autism 20 years ago: “We understood a lot more than a lot of people who studied it,” he said. Ahead of Trump’s first term in 2017, he met with the president to consider a commission on vaccine safety and autism. It didn’t happen then. But soon after Kennedy was confirmed as health secretary, he “preventable,” “environmental toxins,” and contradicted the results of a finding that the main driver of rising autism diagnoses was that doctors increasingly recognize the disorder.

In addition to its focus on Tylenol, the White House said it would “prescribing information” on leucovorin — a medication related to the B vitamin folate — to reflect its use as an autism treatment. A small in 2012-13 suggested the drug may help treat language problems in some children with autism. Tager-Flusberg said the findings warrant further study but clarified these were “old data, not a breakthrough.”

Still, these studies couldn’t rule out the possibility that fevers prompting women to take Tylenol, rather than the medicine itself, might instead be to blame. — including by vaccines — have also been linked to autism.

She welcomed the White House’s motion to consider labeling Tylenol to emphasize judicious use of the drug but worries about how the MAHA movement might distort a careful message. On Sept. 2, the right-wing news outlet One America News Network with newly appointed CDC vaccine adviser Robert Malone, writing that Malone “speculates RFK Jr. may have an important announcement this month regarding a potential link between Tylenol, multiple vaccinations and autism in children.”

Several and have called for Kennedy’s removal or resignation. Many scientists are skeptical of what he says because much of it has been misleading or wrong. For example, HIV isn’t the only cause of AIDS (it is), that antidepressant drugs cause mass shootings (), that older adults don’t have severe autism (), that the measles vaccine causes brain swelling (), that covid vaccines were the deadliest vaccines ever made (), that vaccines aren’t safety-tested (), and that vaccines contribute to autism ().

“This is like the boy who cried wolf,” said Brian Lee, an epidemiologist at Drexel University. “One day he might be right about something and Americans who are not prone to conspiracies won’t trust it because it’s coming from RFK’s mouth. And that could be a problem.”

What’s more, the Trump administration is eroding scientists’ ability to probe the safety of pharmaceuticals, said Robert Steinbrook, head of health research at Public Citizen, a nonprofit consumer protection group.

“Public Citizen is very supportive of research on medications that could be linked to diseases,” he said. “But it needs to be through an open process, which looks at scientific evidence, and which doesn’t cherry-pick studies to support a preconceived point of view.”

Steinbrook said the administration has undermined his confidence in the government’s ability to conduct credible work. The Food and Drug Administration has held less than a third the number of advisory committee meetings this year as it did last, meaning fewer opportunities for experts to discuss research on the risks and benefits of drugs. The Trump administration has fired hundreds of career scientists at the CDC and FDA and cut millions of dollars in research funds, including to projects studying autism.

In early September, the CDC issued an unusual contract with the Rensselaer Polytechnic Institute to analyze datasets for signs that vaccinated children were more likely to have autism. Unlike with other research initiatives, the CDC didn’t post an open call for applications in advance. This allows agency experts to review proposals and select studies best designed to answer the question at hand.

CDC researchers told Ńîšóĺú´ŤĂ˝Ň•îl Health News that experts in the agency’s autism and disability group weren’t aware of the contract or asked to review the proposal. That’s important, they said, because researchers digging through data to find clues about autism must show how they’ll rule out biological and environmental exposures that muddy the results, and ensure that children have been accurately diagnosed. One researcher said, “It absolutely looks like Kennedy has subverted the grantmaking process.”

The CDC and HHS did not respond to Ńîšóĺú´ŤĂ˝Ň•îl Health News’ requests for information on the grant, including through a Freedom of Information Act request.

The new vaccine study is separate from Kennedy’s autism data-science initiative, which was posted as an open call at the National Institutes of Health. “The hope is that something good comes of it, and that the government won’t cherry-pick or censor what scientists find out,” Lee said.

Bauer said she didn’t apply to be part of the initiative because of Kennedy’s outsize presence at HHS.

“I would not take his funding because it could take away from the credibility of my study,” she said, “in the same way that taking money from pharmaceutical companies does.”

Ńîšóĺú´ŤĂ˝Ň•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

USE OUR CONTENT

This story can be republished for free (details).