On at least 10 days in the previous month, Tingley had hit, kicked, or elbowed aides when they were trying to help her change her briefs, get dressed, bathe, or go to the bathroom, according to Vista Grande behavior logs. Vista Grande wanted permission to sedate her.

Into the new year, Tingley’s sons and Vista Grande fiercely wrangled over one of the most contentious topics in long-term care: the use of antipsychotic medications to pacify agitated people with dementia. The medications come with risks: The Food and Drug Administration requires pharmaceutical companies to warn that these potent drugs increase the chance of death in older people with Alzheimer’s and similar diseases.

More than have a diagnosis of dementia. Despite a 14-year campaign by the federal government to reduce the use of psychotropics, 1 in 4 Medicare beneficiaries with dementia are potentially inappropriately prescribed antipsychotics and other brain-altering medications that can cause delirium, falls, and hospitalizations, a estimated.

While some families and guardians agree that the benefits of these drugs outweigh the risks, those with misgivings confront a wrenching choice: consent to drugging loved ones or risk eviction from a long-term care facility.

As the Tingleys alternately acquiesced to and resisted Vista Grande’s insistence on medication, administrators started calling 911 after altercations, according to ambulance and police dispatch records. Tingley was repeatedly taken to the emergency room for assessment, hospital records show.

After four trips, Vista Grande gave Tingley a 30-day eviction notice, and it sent her to the hospital four more times while the family was arranging a new placement, medical records show.

“I want her out of here,” a flustered administrator told an ambulance crew, one entry shows.

Tingley died at another facility in January 2025. The cause was plaque buildup in her brain, a , a degenerative brain disease and the most common type of dementia.

“They just wanted to have her drugged up,” David Tingley, one of her five sons, said about Vista Grande in an interview. “It’s a lot easier to take care of someone who’s just out of it.”

Her sons’ lawsuit against Vista Grande and its director at the time accused them of negligence, causing emotional distress, and wrongful eviction. The suit also asserted Vista Grande initiated the ER trips in retaliation for the family’s disagreements about Tingley’s care. Vista Grande and its director have denied the allegations. Their attorneys and the director did not respond to requests for comment.

In a legal filing, Vista Grande called the drugs recommended to the Tingleys “routine medication” and said it sent their mother to the hospital “because of her family’s refusal to allow Ms. Tingley to be treated on site.”

A Michigan Circuit Court judge has dismissed the negligence claim on legal grounds. A trial is scheduled for early next year on the remainder of the lawsuit if mediation fails.

Earlier this year, Vista Grande, which was a nonprofit, became a wholly owned subsidiary of Otterbein SeniorLife, which renamed it Otterbein Jackson SeniorLife Community. Otterbein is not named in the lawsuit, and representatives did not respond to requests for comment.

Dangers of Aggression

Diseases that cause dementia damage the parts of the brain that regulate impulse control and perception. Impaired people can become aggressive because of fear — especially when they no longer recognize their caregivers — or because they have no other way to communicate that they are in pain, are hungry, or have some other need.

Altercations between agitated people with dementia and other residents or workers charged with caring for them are in long-term care facilities and private homes. 51ÊÓƵ Health News previously found that federal inspectors have cited nursing homes more often for resident-to-resident abuse than for any other type of abuse, neglect, or exploitation.

Those dangers are particularly true in the more than that specialize in dementia care, usually in locked buildings or units populated by people with cognitive damage. These memory care facilities promise specially trained staff and meaningful activities for residents and usually charge more than standard assisted living.

The long-term care industry’s reliance on tranquilizing medications has been a concern of Congress for half a century. A stated that “an ugly pattern of prescription drug misuse, with harsh consequences to patients, exists in many nursing homes of the United States.”

A National Campaign

In 2012, the Centers for Medicare & Medicaid Services launched its to target overprescribing. It has shown some success with reducing the use of antipsychotics, which the FDA has approved primarily for people with schizophrenia. Excluding those patients, antipsychotics were given to nursing home residents in 2025. An inspector general identified “alarming instances of inappropriate use of antipsychotic drugs.”

Nationally, nearly in assisted living facilities have Alzheimer’s or other diseases and conditions that cause dementia. Unlike nursing homes, assisted living facilities don’t provide skilled medical care around the clock, but they help people with fundamental activities like bathing and eating. States regulate them, not the federal government.

A study published in 2023 in JAMDA, the journal of the society representing post-acute and long-term care medicine, found that, on average, assisted living residents with dementia for 13% of the time they lived there. Other researchers through 2017 concluded the federal campaign “did not appear to affect antipsychotic prescribing” in these residents.

Lauren Gerlach, a geriatric psychiatrist and an associate professor at the University of Michigan Medical School, said there is evidence that aggressive behaviors are better addressed by non-medication interventions, like looking for underlying medical issues or heading off situations that typically upset the person. But, she said, “for some patients, these behaviors are so severe that medications will be required.”

A Steady Decline

The details of Marjorie Tingley’s time at Vista Grande — as alleged in documents filed in the lawsuit; records provided by the Tingleys and their lawyer, Ron Marienfeld; and interviews and emails with the family — provide an unusually intimate look into what can happen when families and caregivers clash over brain-altering drugs.

A Detroit native, Tingley was a volunteer reading teacher in the Jackson, Michigan, public school system and worked in the general office. Later, she was a certified financial planner. Her sons said she was successful but made less money than she might have, because she didn’t direct investments to get the highest commissions. Instead, she did what she thought was best for clients.

“She was just so honest,” David Tingley said.

She was an active member of the Catholic Church. Her husband, Eugene, died in 2010.

Around 2018, her sons noticed she was becoming forgetful, not taking her regular medications or recognizing aides they had hired. David and his brother Mark, who shared power of attorney, said in an interview that their mother’s memory deteriorated further after a head injury in a 2019 car collision.

They hired caregivers to help at her home in Jackson, but by 2021, they decided she needed to be in a facility, choosing the assisted living unit at the nonprofit Vista Grande.

In 2023, Vista Grande told them that their mother’s dementia had progressed and that she needed to go into the memory care unit or leave. Vista Grande’s memory care marketing materials said its “dedicated team creates an individual program of support for each resident” and “provides for the precise services you need.”

David said they reluctantly agreed to the move but thought the quality of care was better in general assisted living, even though memory care cost more. Vista Grande charged Tingley $9,150 a month for memory care, her lease shows.

‘These Pills Have Side Effects’

Vista Grande first contacted the Tingleys in early December 2024 about behavioral incidents. According to facility records, Marjorie Tingley pushed an aide trying to help her use the bathroom and the aide almost fell. She yelled and kicked at staff trying to put on her shoes and socks. She wandered into another resident’s room and took a walker.

The facility requested permission to medicate Tingley, but her sons said they first wanted her checked for a urinary tract infection, which they said had caused her agitation in the past. “These pills have side effects,” Mark said. “I thought, ‘Personally, I don’t want her to have that.’”

Vista Grande collected the sample but didn’t ensure it was tested by a lab for more than a week, by which time the test had to be redone, according to facility and medical records.

In mid-December, Vista Grande sent Tingley to Henry Ford Jackson Hospital for a mental health evaluation, at which psychiatrists could decide whether she required involuntary hospitalization. Doctors did not find that necessary, but they confirmed a urinary tract infection and she was given antibiotics. Vista Grande declared she could not return unless the family agreed to sedating medication, according to hospital records.

In a court filing, Vista Grande said Tingley had become a “danger to herself and others.” Mark recalled feeling at the time that: “It’s like they’re holding her ransom unless I say she can have that pill.”

Medication Begins

The specific medications were prescribed either by hospital doctors or a nurse practitioner working for a medical group that serviced residents of Vista Grande and other long-term care facilities, medical records show. David said Vista Grande had encouraged the family to replace their mother’s longtime physician with that medical group. The lawsuit did not name the nurse, the medical group, or the hospital as defendants. Henry Ford Health declined to comment.

The brothers allowed Vista Grande to give their mother the drug Ativan, the brand name , as needed. Ativan is not an antipsychotic but a benzodiazepine that the FDA for people with anxiety. The label says it can , unsteadiness, and weakness and is supposed to be used “with caution” in patients with breathing problems — like Tingley, who had sleep apnea. It can cause “paradoxical” reactions such as agitation and rage.

After a week, Vista Grande workers gave “mixed reports” about whether the Ativan was calming Tingley, according to her medical records. Employees said she still would yell and was “very agitated.”

The family said they authorized Vista Grande to replace Ativan with a low dose of Zyprexa, the brand name for the , which the FDA has approved to treat schizophrenia and bipolar disorder. The FDA requires Zyprexa to carry a stating that it is not approved for the treatment of patients with dementia-related psychosis and places them at greater risk of death.

Nonetheless, Zyprexa has a long history of being prescribed that way. Eli Lilly, the drug’s manufacturer, pleaded guilty in 2009 to allegations that it improperly promoted the use of Zyprexa for dementia with long-term care providers and primary care physicians. The company a criminal fine and civil settlement totaling $1.4 billion.

The black box warning on Zyprexa alarmed the sons, and their online research made them worried that Zyprexa could damage their mother’s heart, since she had . While the family approved the prescription, they authorized only 2.5 milligrams of Zyprexa a day, half the starter dose recommended by Eli Lilly.

‘She Could Barely Function’

On both New Year’s Eve and New Year’s Day, Vista Grande sent Tingley to the emergency room. On Jan. 2, Vista Grande gave the family the 30-day eviction notice. “We have determined we are unable to meet the level of care and expectations required for your mother’s well-being,” it said in the letter.

While the family started looking for another facility, Vista Grande sent Tingley to the ER four more times.

A psychiatrist consulting with the hospital endorsed doubling the Zyprexa to the starter dose recommended by Eli Lilly, and the Tingleys consented, according to medical records.

For five days, there were no incidents at Vista Grande, according to her medical records. But the family alleged in court filings that Tingley was being excessively sedated. They instructed that the Zyprexa be cut back to its initial level, according to her medical records.

“She could barely function,” David said in the interview.

The sons said they were especially disturbed to learn she was being given both Ativan and Zyprexa after they had approved Zyprexa as a replacement drug.

Reports from emergency room crews and the hospital made the sons doubt their mother was as aggressive as Vista Grande described, they said. Those records show that throughout the ER trips, Henry Ford employees and ambulance workers generally found Tingley cooperative and polite.

A nurse said Tingley allowed her to braid her hair and blew her kisses when she left. “Just the sweetest patient and very loving,” another ER worker wrote in the medical records. A physician noted the discrepancy from what Vista Grande was reporting, writing in her record: “Her behavior on what I am witnessing is completely contrary to what they are indicating.”

In a legal filing, Vista Grande attributed Tingley’s calm to medication and the “familial love and attention” her sons gave her at the emergency room.

“The next time Ms. Tingley decompensated, the cycle predictably resumed,” Vista Grande said in the filing.

Vista Grande reported that aggressive behaviors resumed and continued sending Tingley to the hospital. On the last trip, Jennifer Wheeler, then-director of Vista Grande’s memory care unit, told ambulance workers that Marjorie would not be accepted back, according to EMS notes. “She is a danger to other residents and a danger to my staff,” Wheeler said.

Tingley stayed in the hospital until she was moved to another memory care facility in Jackson. on Jan. 26, 2025, less than two weeks later.

Her sons asserted in their lawsuit that the frequent trips back and forth to the hospital hastened their mother’s demise.

“They weren’t really caring about my mom,” Mark said. “If they were, they would know that all this back-and-forth to the hospital was no good for her.”

This article first appeared on 51ÊÓƵ Health News and is republished here under a .

Then, last October, Wood took a fall, broke her neck, and spent three months in rehabilitation. When she returned to the house she shares with her niece, she couldn’t walk without assistance. “I still don’t dare go up and down stairs unless someone is with me,” said Wood, 93.

That has redefined their neighborly relationship. Straight, 53, a retired chef, now visits weekly, bringing lattes and cookies, and often leftovers from dinners she has made. Her husband installed a grab bar in Wood’s bathroom, put up shelves, and changed her light bulbs and smoke detector batteries. The texts fly back and forth.

Straight calls to say I’m going to the grocery store. Do you need anything? Wood, who no longer drives, provides a shopping list.

“She is a gift from heaven,” said Wood, a retired insurance executive. “We talk and talk. Sometimes we shed a few tears, but mostly we laugh. I never thought I’d have a new best friend at this time of my life.”

Eldercare, typically considered a family obligation, is evolving to adapt to demographic shifts that make reliance on spouses and children less assured.

“The number of older adults who have never married or are divorced has been increasing, so we have more people aging alone,” said Deborah Carr, a sociologist at Boston University who has investigated these trends.

“The proportion who are childless, by choice or not, is also growing,” she added, and families with children have fewer of them than in past generations.

Geographic distances or also fuel the need for other kinds of caregivers — roles that friends or neighbors can fill.

How commonly do friends step into caregiving gaps? A recently published study in JAMA Network Open, led by researchers at the University of Michigan, looked into , usually in supplementary roles.

They used data from the National Health and Aging Trends Study, in which more than 2,600 older people with health limitations (average age: 79) identified friends and family members who provided help. Family members were most likely to care for aging relatives, but about 14% of participants identified friends (including neighbors) in that role. That represents 2.4 million caregiving friends nationally, the authors estimated.

Last year, a by AARP and the National Alliance for Caregiving put the proportion of caregivers supporting nonrelatives at 11%.

“Friends are among the auxiliary caregivers who have not been acknowledged,” said Karen Fingerman, a gerontologist at the University of Texas-Austin and co-author of a the study. “We neglect the sacrifices they make.”

The study, believed to be the first nationwide look at caregiving friends, found they functioned differently from relatives. They’re unlikely to live with the person they’re helping, for example, and rarely serve as the sole caregiver.

“They provide fewer care hours,” said Yee To Ng, a gerontologist and lead author of the study, which found that friends supplied 18 hours of help a month on average, compared with about 67 hours from family.

They assist in different ways, too. “Friends are more likely to provide transportation,” Ng said. Two-thirds of caregiving friends drive their friends around; shopping, helping people go outside, preparing meals, and accompanying patients to medical appointments round out the top five tasks.

Sometimes they do more. Czes Ferrino, 82, is widowed and lives alone in Westerly, Rhode Island. She has no disabling health problems, but when her car died recently, her next-door neighbor went with her to several Subaru dealers to find a used replacement. “He walked me through it like a son would for a mother or grandmother,” Ferrino said.

On the other hand, “there are some tasks friends might not be well equipped to provide or be comfortable with,” Ng said. Personal care, like bathing and dressing, remains largely the province of family members.

“Those can infringe on people’s self-esteem,” Ng said. “With family, we accept that when you’re really ill, they step up with intimate activities. It’s embarrassing to have your friends help you use the toilet.”

The researchers also found that respondents who named friends as caregivers were younger than those with only relatives in that role, and more apt to have college degrees. People with higher education levels have larger social networks, Fingerman said.

Those assisted by friends were also, unsurprisingly, less likely to be married and more apt to live alone — like Ann Greenwater, 84, who lives in a mobile home park in rural Humboldt County, California.

She managed independently until a few years ago, when severe back pain rendered her bedridden for nearly three months. Although she’s up and about now and can handle housekeeping, cooking, and personal care, “I’ve never really fully recovered,” Greenwater said.

She is single, with no family beyond a distant nephew she barely knows, and has stopped driving. But a cadre of friends she knows from a nearby Zen Buddhist center stepped in.

Milli Quam, 86, does her laundry and drops it off, sometimes picking up prescriptions en route. A 73-year-old helped Greenwater with her computer and, along with several others, takes her grocery shopping or shops for her. Members of a local volunteer organization drive her to medical appointments.

“I love Ann, and I’m happy there’s something concrete I can do,” Quam said. “I hope I can keep doing it for a long time.”

Friends have some advantages as caregivers. “Our friends are our own age and understand what we’re going through,” Carr said. “They may have more empathy and sometimes real knowledge they’ve acquired.” When family caregivers are on the job, friends’ efforts can reduce their burden.

But nonrelatives may also prove less stable as a source of help. Neighbors move. Strains can develop if the person needing care becomes too demanding or feels guilty about accepting help, challenging the egalitarian expectations for friendships. These in those with physical limitations, a study led by Carr found.

Nor is there much policy support for these caregiving relationships. The federal Family and Medical Leave Act, for instance, “with rare exceptions does not provide job-protected leave from work to care for a friend with a serious health condition,” Laura Lawless, a labor and employment lawyer with Squire Patton Boggs, said in an email.

“For family, ‘through thick and thin’ is the expectation,” Carr said. “There’s huge stigma to being estranged from your family, but it’s kind of normal for some friendships to just fall away.”

In Sausalito, Wood tells Straight that “she’s not allowed to move until I die.” She’s joking, sort of.

Greenwater’s friends in Humboldt County, to her gratitude, have not fallen away either. But they are aging along with her; at 86, Quam pointed out, she may stop driving before long, too.

“I’m wondering what will happen when these friends aren’t able to come to me,” Greenwater said. “I guess we’ll deal with it when it comes.”

The New Old Age is produced through a partnership with .

This article first appeared on 51ÊÓƵ Health News and is republished here under a .

We’re expecting our first baby boy in end of August. And when I think about what it’s going to feel like to take care of my wife and my new son and my mom, it’s a bit overwhelming.

If you are taking care of a child and you have a parent over 65, you’re among millions across the U.S. in the same life stage.

Nearly a quarter of all American adults — and half of all adults in their 40s — fall into this “sandwich generation” category, . And being in the middle of that sandwich can feel … intense.

“I have kind of prided myself on being self-sufficient. And in this season of life, that’s almost been laughable,” said Jason McAnally, a Nashville father of two who helps care for his aging dad.

HealthQ hosts Cara Anthony of 51ÊÓƵ Health News and Blake Farmer of Nashville Public Radio, both in the sandwich generation themselves, are your approachable guides to an unapproachable healthcare system. In this one-hour special about navigating health and caregiving, they tap researchers, physicians, experts, and their own personal experience to explore:

• Identity: When to start calling yourself a caregiver, and why it matters.
• FMLA: How to start a conversation with your boss about taking federally protected leave from work.
• Kids and mental health: How to know it’s time to take an anxious child to therapy.
• Early-onset cancer: What you need to know about spotting diseases that are on the rise among people under 50.

The HealthQ team acknowledges the messiness, the humor, and the beauty of this season of life. Come on the journey with us.

Can’t see the audio player? Visit kffhealthnews.org to listen.

This installment is part of HealthQ’s reporting on caregiving among the sandwich generation. For more, check out the series archive.

HealthQ is a health series from reporters Cara Anthony and Blake Farmer, approachable guides to an unapproachable healthcare system. It’s a collaboration between Nashville Public Radio and 51ÊÓƵ Health News.

This article first appeared on 51ÊÓƵ Health News and is republished here under a .

Can’t see the audio player? Visit kffhealthnews.org to listen.

Cara Anthony tries to convince her HealthQ co-host Blake Farmer that there are benefits to embracing the caregiver identity when helping an aging parent.

When his father was diagnosed with gallbladder cancer in 2025, William Morrison immediately went into caregiving mode.

“We were in the hospital every day,” he said. “I was really playing the intermediary between the medical staff and our family and kind of helping have those conversations and push for those answers.”

One in 10 Americans say they are a caregiver for a parent 65 or older, . And many people in the sandwich generation — those who have both children and aging parents — start their caregiving journeys like Morrison: stepping up during a medical crisis and becoming a family caregiver essentially overnight.

For other people, taking on the role and identity of a caregiver happens more slowly.

Researchers and experts say the spectrum of caregiving is broader than many people realize and that embracing the caregiver title before there’s a crisis can make a significant difference in this phase of life.

Worry Comes First

Being a caregiver can start long before you go to a doctor appointment with a loved one or move your parents into your house. “Oftentimes what we see out in the world is a very limited definition of who a family caregiver is,” said Denise Brown, a caregiving coach and the founder of Caregiving Years Training Academy in Illinois. Being a caregiver is “not necessarily around defining caregiving by tasks and chores, but about that emotional impact.”

Brown created a framework that defines caregiving as a . She said the first stage — the “expectant caregiver” — begins the moment you start to feel concerned about a loved one.

“ You look into the future and you think, ‘Oh, I think someone’s going to need help in the family,’” Brown said.

When you start to get actively involved in a loved one’s care, that triggers the second stage, what Brown calls the “freshman caregiver”: “You’re learning the lay of the land. You’re learning the language of all the systems that you now manage. The best thing to do in this stage is to get comfortable experimenting.”

Caring for Parents Brings Different Stressors

The kind of care that Morrison provided — responding to an immediate medical crisis — catapulted him into the third stage of caregiving, the “entrenched caregiver.” By the time you hit this point, Brown said, “you can feel completely overwhelmed and swallowed up by the experience.”

that the stress is especially acute for people taking care of parents. The role reversal stresses the relationship: Caregivers who focus solely on children don’t deal with the tension linked to shifting power dynamics and other changes that happen when an adult child starts to care for a parent.

Burnout, defined by physical and psychological fatigue, was higher among caregivers of aging parents than among caregivers caring only for children. And for caregivers in the “sandwich generation,” who were taking care of both children and aging parents, personal burnout scores were even higher.

The Title Makes a Difference

Many people who perform care tasks don’t consider themselves caregivers, , but those who do are more likely to access support services and feel a sense of community with other caregivers.

“Anyone in a caregiving situation deserves support and help,” Brown said.

Embracing the role of caregiver early also allows you to have “really good conversations with people in your life” about their desires — and yours — as you enter this phase, Brown said.

Morrison, whose father died earlier this year, is about to enter his own sandwich generation era: He and his wife are expecting a baby boy in August, and he’s been stepping in to help his mom with housework and administrative tasks.

Morrison and his wife have already had conversations about making time for themselves and each other after their son is born. Morrison also wants to be more intentional with his own health, even if that means just going for walks.

People and Policy

Beyond the emotional strain, caregiving comes with substantial costs. On average, caregivers spend more than $7,000 a year on medical and other expenses to support a loved one, according to in 2021.

Some efforts aim to mitigate the financial burden. In most states, family members can get paid to take care of relatives who qualify for Medicaid. But state Medicaid programs face new pressure from federal cuts, and some states have pulled back funding for home-care programs designed to help residents with disabilities.

Meanwhile, a handful of states for unpaid caregivers. For example, starting in 2027, Connecticut will allow family caregivers who make less than $50,000, or couples who make under $100,000, to apply for a tax credit up to $2,000.

This installment is part of HealthQ’s reporting on caregiving among the sandwich generation. For more, check out the series archive.

This article first appeared on 51ÊÓƵ Health News and is republished here under a .

Can’t see the audio player? Visit kffhealthnews.org to listen.

Being a family caregiver is hard work. On June 17, 51ÊÓƵ Health News Midwest correspondent Cara Anthony joined WAMU’s Health Hub to discuss her experience with parenting while also caring for aging parents. Listen in as she shares tips for other members of the “sandwich generation.”

Are you juggling the responsibilities of raising children and having aging parents?

Navigating that role can come with new responsibilities, stressors, and unexpected expenses, but claiming the caregiver identity can help. Researchers have found that people who identify as caregivers are more likely to use support services and feel a sense of community with others.

51ÊÓƵ Health News correspondent Cara Anthony joined WAMU’s Health Hub on June 17 to share her experiences as a parent with aging parents.

This article first appeared on 51ÊÓƵ Health News and is republished here under a .

He had rolled his wheelchair to the oven to keep himself warm as he tried to regulate his temperature, she recalled, and was drenched in sweat from an apparent infection.

In that moment, Quette knew that she and her son’s grandmother could no longer meet his medical needs on their own at their Illinois home just outside St. Louis. He had become paralyzed when he was shot in 2023, and, despite their efforts, they struggled to take care of him. But she never imagined that her quick call for help that day would turn into a months-long hospital stay for her son — even after he was well enough to be discharged.

She said their family had been begging hospitals for a home health aide to help care for his wounds, only to be accused of neglect. “They were like, ‘Well, y’all almost killed him,’” she recalled officials telling her. 51ÊÓƵ Health News agreed to use only her nickname to protect the safety of her son.

“I had to give up. I just couldn’t take care of him anymore,” Quette said. “It was just a lot on me. It was something that I was not ready for.”

Once his immediate medical needs were addressed, her son didn’t leave the hospital. His grandmother, who was his legal guardian, had died and the teen ultimately became a ward of the state. He continued living inside a St. Louis children’s hospital for what’s commonly called a “social stay.” Also referred to as hospital boarding or delayed discharge, the practice of keeping children in hospitals “beyond medical necessity” has become a persistent problem — flummoxing officials in Missouri, Illinois, Minnesota, Georgia, and beyond — when there’s no safe place to care for the child.

Finding homes for foster kids is difficult across the country. They have spent nights in casino hotels in Nevada and offices in Georgia . This problem even has a name: “hoteling.” But add medical needs to the mix, and hospitals become the holding station for some kids.

Many children stuck in this limbo have mental health or behavioral issues, while some have chronic physical conditions or disabilities for which they need technology, equipment, or other assistance.

“It’s definitely a national problem,” said , a pediatrician at Boston Children’s Hospital and the chair of the American Academy of Pediatrics’ . “Every state has different options in terms of where kids can go post-acute care. But in general, there’s many of our kids with medical complexity who just don’t have access to the appropriate home nursing to bring them home safely.”

It’s gotten so bad that Missouri lawmakers have repeatedly to try to significantly reduce the number of hospital boarding days each year and eventually end the practice altogether.

Quette said her son was housed in a private hospital room while he waited for the state to find a place for him elsewhere. Other children spend weeks, months, and, in extreme cases, years in acute care hospitals while grown-ups scramble to find them safe places to go, according to Lynn Rasnick, a nurse and vice president at the Missouri Hospital Association. She said some children sleep on emergency room stretchers. They sit in windowless rooms. They miss school. And they’re exposed to all the trauma that comes through the hospital on any given day.

To keep young boarders safe, some hospitals hire “sitters” for kids with no place to go, while other institutions have passed along chaperoning duties to hospital workers.

But all that comes at a cost beyond the toll it takes on kids and families. When a child no longer needs hospital-level care, insurers don’t have to pay for their stay. Some hospitals eat the cost. Others ask the state for reimbursement if the child who is waiting for placement is in state custody.

According to the Missouri Hospital Association, the state’s Department of Social Services reimbursed $16.3 million to 19 hospitals for 9,943 boarding days last year — more than $1,600 a night. But association spokesperson Dave Dillon said that’s a substantial undercount of the problem and that hospitals often aren’t reimbursed for housing children.

One study found that boarding a child with a complex medical condition in Minnesota a day in 2017. And a 2023 Minnesota Hospital Association survey of about 100 hospitals of “unnecessary” patient stays for adults and kids at $487 million for 195,000 days of care.

Lin, the Boston-based pediatrician, said a shortage of home healthcare workers forces some families to keep their children in the hospital, even though they’re well enough to go home.

State Medicaid programs face new pressure from federal cuts in congressional Republicans’ One Big Beautiful Bill Act. Medicaid, which provides healthcare coverage for those with low incomes or disabilities, is expected to lose nearly $1 trillion in federal funding by 2034, so some states are already threatening to scale back optional home-care programs.

Quette, a single mom who once worked as a paid caregiver and now works as a custodian, said her family repeatedly asked hospitals for a home health aide but was told her son’s insurance wouldn’t cover it. Her son’s paternal grandmother, who had helped raise him, was in a wheelchair herself at that point. Quette’s son needed his bandages changed regularly, and she had to turn him around in his bed every four hours.

“I had to wake up out of my sleep to rotate him,” Quette said. “And I couldn’t do it. I was oversleeping.”

Parents across the country face similar challenges. Last year, Georgia officials said 500 children had been and turned over to the state’s Division of Family & Children Services due to complex behavioral or psychiatric needs.

In Colorado, a hospital worker emailed a state representative for help after an autistic 13-year-old boy at UCHealth Longs Peak Hospital in Longmont. After his father left him there, officials told hospital workers that it would take months to find a safe place for the boy to go.

Last fiscal year, the Illinois Department of Children and Family Services logged 304 cases of youth in psychiatric hospitals beyond medical necessity, according to an released by the state. About 43% of those cases were among patients ages 13 to 16.

This year, Missouri state Sen. , a Republican, introduced a bill that would require his state to move faster and pay for care when a child is stuck in a hospital. Similar bills died in committee and . This year, Burger’s bill remained stuck in committee when the legislative session ended May 15.

According to a attached to the bill, paying for hospital boarding could cost more than $148 million a year in a state that already to fund its upcoming $50.7 billion budget.

Over 18 months, the Mercy hospital system, one of the largest in Missouri, logged 2,687 boarding days, testified Patty Morrow, a Mercy vice president, in a March hearing on the bill. That included adults who also were stuck without a safe place to go.

“That was never really ever the intended purpose of a hospital,” Morrow told 51ÊÓƵ Health News. “The current state cannot be the ongoing solution.”

The bill requires the juvenile court system to ensure that children are placed in “an appropriate setting,” which would entail involvement of social workers and other public servants.

Rasnick, with the Missouri Hospital Association, also spelled out the issue during the hearing. “You can’t just discharge a 9-year-old into the street,” she told lawmakers.

Quette’s son is still in state custody but no longer hospitalized. Illinois officials declined to let the teen share his story with 51ÊÓƵ Health News.

His mother said she is still holding on to his brace, bandages, ointment, and other medical supplies in her home. “That’s all I have,” Quette said. “That’s the stuff I will never give away.”

This piece was supported by a grant from the Association of Health Care Journalists, with funding from The Joyce Foundation.

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The patient lived alone, and “really struggles with social isolation,” Guzman said. After a serious fall and subsequent surgery, the woman was using a wheelchair. She confided that she would like to attend services at a church down the road but had no way to get there and did not want to seem “a bother.”

“We called the pastor to see if there was someone who could pick her up” on Sundays, Guzman said. And there was.

The next day, Guzman visited a woman with heart failure who required constant oxygen. She lives in “less than ideal housing,” with no kitchen and only a plug-in heater for warmth.

“We were trying to figure out if she qualifies for HUD housing or assisted living,” Guzman said, referring to the federal Department of Housing and Urban Development. “We spent a lot of time talking about the options and came up with a game plan.”

Wednesday’s schedule included a 20-mile drive to Hood River to see an 81-year-old woman whose partner of nearly 40 years was contending with a serious cancer. Guzman, who speaks to her in Spanish, found her distraught at the possibility of losing him.

Guzman had arranged for the woman to begin seeing a therapist to help her through the crisis — no minor achievement. But on this visit, “I just handed her tissues and tried to give words of comfort,” she said. “Honestly, sometimes just sitting and listening” is the best response.

A community healthcare worker, the , is a “trusted member” of a local community or someone who has “an unusually close understanding” of it, enabling the worker to serve as intermediary between patients and the healthcare system.

These workers have been on the job since the 1960s, particularly in rural and low-income areas. Today, their numbers are growing. The Bureau of Labor Statistics , which the National Association of Community Health Workers says is probably an underestimate.

That partly reflects the difficulty of counting workers who go by a variety of names — community health educators, outreach specialists, promotores de salud — and operate under different state regulations, sometimes with no licensure or certification required.

What they have in common is that “they talk like the people they work with,” said Sam Cotton, who directs the curriculum for several such programs at the University of Louisville in Kentucky.

With shortages of healthcare professionals and an aging population, “there’s a lot of momentum for this,” she said.

In Oregon, for example, five rural clinics employ community health workers, who become state-certified after completing 90 hours of online training, through a program called Connected Care for Older Adults. A sixth clinic employing a community health worker operates in neighboring Washington.

Their frail patients are struggling. “They can’t drive, so they can’t get to a grocery store and shop,” said Elizabeth Eckstrom, chief of geriatrics at Oregon Health & Science University, who helped oversee the program’s start in 2022. “They’re not taking their medications, either for cognitive reasons or because they can’t get to a pharmacy.”

Few have completed an advance directive, specifying the care they want — or don’t want — if they suffer a health crisis.

Connected Care’s community health workers tackle many of those not-exactly-medical problems — from installing wheelchair ramps to helping patients apply for food and housing benefits. They are allotted 90 days to work with each patient, usually during home visits.

They help coordinate follow-up appointments. They administer cognitive and mental health screenings and watch for the use of too many medications, entering their observations into the patients’ electronic health records.

“It’s like being the eyes and ears for the doctors, to see what’s happening outside the 20 minutes they get to spend with patients,” said Guzman, whose work has ranged from ordering a bath mat to reporting suspected financial abuse.

In a  (average age: 77), a subsample found substantial decreases in emergency department visits and hospitalizations among those served by community health workers.

More extensive research, not yet published, supports that finding, Eckstrom said.

“ED visits cost thousands, and hospitalizations are tens of thousands,” she pointed out. The cost per patient for the 90-day program is $1,500. Its workers earn $25 an hour, a fairly typical wage, and receive full employee benefits.

Manali Patel, an oncologist at Stanford University, found for older patients with advanced cancer in a clinical trial at the Department of Veterans Affairs’ Palo Alto Health Care System.

“Lots of people were passing away” in the intensive care unit, she recalled. “If we’d asked, they probably would have wanted to be at home.” Oncologists, she added, are “notoriously bad at engaging in and documenting those conversations.”

But when a lay health worker made regular phone calls to help patients understand their options, discuss their preferences with their care team, and file advance directives, the results — published in JAMA Oncology in 2018 — were “very dramatic,” Patel said.

More than 90% of the participating veterans had their goals documented in their records compared with fewer than 20% of the control group. The lay worker’s patients had significantly fewer emergency room visits and hospitalizations and were more likely to enroll in hospice care.

Patel and her co-authors have gone on to document the benefits of lay health workers, the term they used, in undertaking other tasks in other settings.

In oncology clinics in Arizona and California, for instance, two bilingual lay health workers to cancer patients over age 75 to assess symptoms like pain, nausea, breathlessness, and depression.

Alerting healthcare teams to these patients’ problems substantially reduced their emergency department use and hospitalizations, and the cost savings averaged $12,000 a patient.

“This low-tech, human-administered intervention reaped huge dividends,” said an  in JAMA.

“Community health workers should be part of every healthcare team,” Eckstrom said. “They support the patient in ways the medical system just can’t, no matter how hard we try.”

One obstacle to expanding their use, however, is unstable funding.

In 2024, Medicare began covering some community health worker services, but not all. (The costs of driving 30 miles to remote homes, for example, are not reimbursed.) Medicaid coverage is piecemeal, reimbursing for some services in some states and not others.

“A lot of community health worker roles rely on short-term grants,” said Neena Schultz, a director of the National Association of Community Health Workers. “Sustainability is something we talk about every day.”

The organization and other supporters are pressing for more state and federal funding. The new federal , which is distributing $10 billion a year, will include funding for community health worker programs, but cuts to state Medicaid budgets could more than offset those gains.

The grants funding Connected Care for Older Adults continue, though. Guzman, employed by the nonprofit clinic One Community Health, keeps making her rounds.

One recent victory: A newly widowed patient in his 60s, struggling financially without his wife’s income, lost his housing and was sleeping in his truck. Through another patient, Guzman learned of an unused recreational vehicle whose owner was willing to donate it.

The widower now lives comfortably in a mobile home park.

When you’re in a patient’s home, “there’s a sense of ease,” Guzman said. “They feel safer talking about things. They don’t feel rushed. You develop a relationship, and they feel they have someone to advocate for them.”

The New Old Age is produced through a partnership with .

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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 51ÊÓƵ 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 51ÊÓƵ 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 51ÊÓƵ, a national health information nonprofit that includes 51ÊÓƵ 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.”

51ÊÓƵ 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 51ÊÓƵ, a health information nonprofit that includes 51ÊÓƵ 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.”

Most States Will Have To Implement Medicaid Work Rules

The federal budget reconciliation law passed in July will require Medicaid enrollees in 42 states and the District of Columbia to show they’re working, volunteering, or attending school for 80 hours a month starting Jan. 1, 2027, to keep their coverage. The eight states that did not expand their Medicaid programs to cover additional low-income adults won’t have to implement the work rules.

*Georgia currently has an active work requirement program.

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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 51ÊÓƵ 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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