Kaiser Health News
Desperate Families Search for Affordable Home Care

Reed Abelson, The New York Times
Mon, 04 Dec 2023 10:00:00 +0000
It’s a good day when Frank Lee, a retired chef, can slip out to the hardware store, fairly confident that his wife, Robin, is in the hands of reliable help. He spends nearly every hour of every day anxiously overseeing her care at their home on the Isle of Palms, a barrier island near Charleston, South Carolina.
Robin Lee, 67, has had dementia for about a decade, but the couple was able to take overseas trips and enjoy their marriage of some 40 years until three years ago, when she grew more agitated, prone to sudden outbursts, and could no longer explain what she needed or wanted. He struggled to care for her largely on his own.
“As Mom’s condition got more difficult to navigate, he was just handling it,” said Jesse Lee, the youngest of the couple’s three adult children. “It was getting harder and harder. Something had to change, or they would both perish.”
Frank Lee’s search for trustworthy home health aides — an experience that millions of American families face — has often been exhausting and infuriating, but he has persisted. He didn’t entirely trust the care his wife would get in an assisted living facility. Last August, when a respite program paid for her brief stay in one so Frank, 69, could take a trip to the mountains, she fell and fractured her sacrum, the bone that connects the spine to the pelvis.
There is precious little assistance from the government for families who need a home health aide, unless they are poor. The people working in these jobs are often woefully underpaid and unprepared to help a frail, older person with dementia bathe and use the bathroom, or to defuse an angry outburst.
Usually, it is family that steps into the breach — grown children who cobble together a fragile chain of visitors to help an ailing father; a middle-aged daughter who returns to her childhood bedroom; a son-in-law working from home who keeps a watchful eye on a confused parent; a wife who can barely manage herself looking after a faltering husband.
Frank Lee finally found two aides on his own, with no help from an agency. Using the proceeds from the sale of his stake in a group of restaurants, including the popular Charleston bistro Slightly North of Broad, he pays them the going rate of about $30 an hour. Between his wife’s care and medical expenses, he estimates he’s spending between $80,000 and $100,000 a year.
“Who the hell can afford this?” he asked. “There’s no relief for families unless they have great wealth or see their wealth sucked away.” He worries that he will run out of money and be forced to sell their home of more than three decades. “Funds aren’t unlimited,” he said.
Credited with emphasizing local ingredients and mentoring young chefs in Charleston, Lee retired in 2016, a few years after his wife’s diagnosis.
In an interview at the time, he said, “My wife has given up her life to help me in my career, and now I need to pay attention to her.”
In 2020, he contacted a half-dozen home care agencies. Some couldn’t fill the position. Others sent aides who were quickly overwhelmed by his wife’s behavior. Doctors told the family they believed she has frontotemporal dementia, which appeared to affect her language and how she behaved.
One woman seemed promising, only to quit after a week or two. “We never saw her again,” Lee said. He tried a friend of the family for a time, but she left when her grandmother developed liver cancer.
“It was the whole year of going through different caregivers,” said son Jesse.
Finally, Frank found two women to help. One of them, Ronnie Smalls, has more than a dozen years of experience and is trained in dementia care. She has developed a rapport with Robin, who seems reassured by a quick touch. “We have a really good bond,” Smalls said. “I know her language, her expression.”
One day at the Lees’ cozy one-story house, decorated with furniture made by Robin, and with a yard overflowing with greenery, Smalls fed her lunch at the kitchen table with her husband and daughter. Robin seemed to enjoy the company, murmuring in response to the conversation.
At other times, she seemed oblivious to the people around her. She can no longer walk on her own. Two people are often needed to help her get up from a chair or go to the bathroom, transitions she often finds upsetting. A day without an aide — out because of illness or a family emergency — frays the tenuous links that hold the couple’s life together.
Lee said his wife barely resembles the woman he married, the one who loved hiking, skiing, and gardening, and who started a neighborhood preschool while raising their three children. A voracious reader, she is now largely silent, staring into space.
The prognosis is bleak, with doctors offering little to hang onto. “What’s the end game look like?” Lee asks, wondering if it would be better if his wife had the right to die rather than slowly disappear before his eyes. “As she disintegrates, I disintegrate,” he said. She recently qualified for hospice care, which will involve weekly visits from a nurse and a certified nursing assistant paid under Medicare.
Charleston is flush with retirees attracted by its low taxes and a warm climate, and it boasts of ways to care for them with large for-profit home health chains and a scattering of small agencies. But many families in Charleston and across the nation can’t find the help they need. And when they do, it’s often spotty and far more expensive than they can afford.
Most Americans want to remain in their own homes, living independently, for as long as possible. They want to avoid nursing homes, which they see as providing poor care, polls have found. And the ranks of older people who need such help will grow. By 2030, 1 in 5 Americans will be at least 65 as millions in the baby boomer generation retire.
In dozens of interviews, families described a desperate and sometimes fruitless search for aides to help loved ones with simple tasks on a predictable schedule at an hourly rate they can afford.
Roughly 8 million people 65 and older had dementia or needed help with two or more activities of basic daily life, like getting out of bed, according to an analysis of a federally funded survey of older Americans by KFF Health News and The New York Times. Only a million received paid help outside of a nursing home, and nearly 3 million had no help at all.
Most families can’t afford what agencies charge — about $27 an hour, according to Genworth, a long-term care insurance company. So, many take their chances on untrained caregivers found through word-of-mouth, Craigslist, or other resources.
A Scarcity of Workers
One of the main obstacles to finding paid help is the chronic shortage of workers. Some 3.7 million people had jobs as aides in home health or personal care in 2022, with half of them earning less than $30,000 year, or $14.51 an hour, according to the Bureau of Labor Statistics. The number of people needed is expected to increase by more than 20% over the next decade. But the working conditions are hard, the pay is usually bad, and the hours are inconsistent.
About 3 million people are working in private homes, according to a 2023 analysis by PHI, a nonprofit that studies and acts as an advocate for the workforce, although official estimates may not count many workers paid off the books or hired outside of an agency by a family. Eighty-five percent of home care workers are women, two-thirds are people of color, and roughly a third are immigrants. The pay is often so low that more than half qualify for public assistance like food stamps or Medicaid.
Dawn Geisler, 53, has made only $10 an hour working as a home health aide in the Charleston area for the past four years, without ever getting a raise. She declined to name the agency that employs her because she doesn’t want to lose her job.
Geisler discovered she liked the work after caring for her mother. Unlike an office job, “every day is just a little bit different,” she said. She now juggles two clients. She might accompany one to the doctor and keep the other one company. “I’m taking care of them like they were my own family,” she said.
The agency provides no guarantee of work and doesn’t always tell her what to expect when she walks through the door, except to say someone has Alzheimer’s or is in a wheelchair. Her supervisors often fail to let her know if her client goes to the hospital, so families know to call her cellphone. She has waited weeks for a new assignment without getting paid a penny. She herself has no health insurance and sometimes relies on food banks to put meals on the table.
“I’m not making enough to pay all the bills I have,” said Geisler, who joined an advocacy group called the Fight for $15, which is pushing to raise the minimum wage in South Carolina and across the country. When her car broke down, she couldn’t afford to get it fixed. Instead, she walked to work or borrowed her fiancé’s bicycle.
Most home health agencies nationwide are for-profit and are often criticized for ignoring the needs of workers in favor of the bottom line.
“The business models are based on cheap labor,” said Robyn Stone, senior vice president of research for LeadingAge, which represents nonprofit agencies. The industry has historically tolerated high turnover but now can’t attract enough workers in a strong, competitive job market. “I think there has been a rude awakening for a lot of these companies,” she said.
Many agencies have also refused to pay overtime or travel costs between jobs, and many have been accused of wage theft in lawsuits filed by home care workers or have been sanctioned by state and federal agencies.
Medicaid, the federal-state program that provides health care for the poor, is supposed to provide home aides but faces shortages of workers at the rates it pays workers. At least 20 states pay less than $20 an hour for a personal care aide, according to a recent state survey by KFF. Aides are often paid less under Medicaid than if they care for someone paying privately.
With low pay and few benefits, many people would rather work the checkout line in a supermarket or at a fast-food chain than take on the emotionally demanding job of caring for an older person, said Ashlee Pittmann, the chief executive of Interim HealthCare of Charleston, a home health agency. She said that she recently raised wages by $2 an hour and had had more success keeping employees, but that she still worried that “we may not be able to compete with some larger companies.”
The Biden administration failed to obtain an additional $400 billion from Congress for home- and community-based services to shift emphasis away from institutional care. President Joe Biden signed an executive order this year to encourage some reforms, and federal officials have proposed requiring home health agencies to spend 80 cents of every government dollar on paying workers under Medicaid. But so far, little has changed.
Falling Through the ‘Doughnut Hole‘
Long-term care coverage for most Americans is a yawning gap in government programs. And the chasm is widening as more Americans age into their 70s, 80s, and 90s.
The government’s main program for people 65 and older is Medicare, but it pays for a home aide only when a medical condition, like recovery from a stroke, has made a person eligible for a nurse or therapist to come to the home. And the aide is usually short-term. Medicare doesn’t cover long-term care.
Medicaid, which does pay for long-term care at home, is limited to serving the poor or those who can demonstrate they have hardly any assets. But, again, the worker shortage is so pervasive that waiting lists for aides are years long, leaving many people without any option except a nursing home.
So millions of Americans keep trying to hang in and stay home as long as they can. They’re not poor enough to qualify for Medicaid, but they can’t afford to hire someone privately.
Many fall through what April Abel, a former home health nurse from Roper St. Francis Healthcare in Charleston, described as “the doughnut hole.”
“I feel so bad for them because they don’t have the support system they need,” she said.
She tried fruitlessly for months to find help for Joanne Ganaway, 79 and in poor health, from charities or state programs while she visited her at home. Ganaway had trouble seeing because of a tear in her retina and was often confused about her medications, but the small pension she had earned after working nearly 20 years as a state employee made her ineligible for Medicaid-sponsored home care.
So Ganaway, who rarely leaves her house, relies on friends or family to get to the doctor or the store. She spends most of her day in a chair in the living room. “It has been difficult for me, to be honest,” she said.
Turning to Respite Services
With no hope of steady help, there is little left to offer overstretched wives, husbands, sons, and daughters other than a brief respite. The Biden administration has embraced the idea of respite services under Medicare, including a pilot program for the families of dementia patients that will begin in 2024.
One nonprofit, Respite Care Charleston, provides weekday drop-off sessions for people with dementia for almost four hours a day.
Lee’s wife went for a couple of years, and he still makes use of the center’s support groups, where caregivers talk about the strain of watching over a loved one’s decline.
On any given morning, nearly a dozen people with dementia gather around a table. Two staff members and a few volunteers work with the group as they play word games, banter, bat balls around, or send a small plastic jumping frog across the table.
Their visits cost $50 a session, including lunch, and the organization’s brief hours keep it under the minimum state requirements for licensing.
“We’re not going to turn someone away,” Sara Perry, the group’s executive director, said. “We have some folks who pay nothing.”
The service is a godsend, families say. Parkinson’s disease and a stroke have left Dottie Fulmer’s boyfriend, Martyn Howse, mentally and physically incapacitated, but he enjoys the sessions.
“Respite Care Charleston has been a real key to his keeping going,” she said, “to both of us, quite frankly, continuing to survive.”
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By: Reed Abelson, The New York Times
Title: Desperate Families Search for Affordable Home Care
Sourced From: kffhealthnews.org/news/article/dying-broke-desperate-families-search-for-affordable-home-care/
Published Date: Mon, 04 Dec 2023 10:00:00 +0000
Kaiser Health News
US Judge Names Receiver To Take Over California Prisons’ Mental Health Program

SACRAMENTO, Calif. — A judge has initiated a federal court takeover of California’s troubled prison mental health system by naming the former head of the Federal Bureau of Prisons to serve as receiver, giving her four months to craft a plan to provide adequate care for tens of thousands of prisoners with serious mental illness.
Senior U.S. District Judge Kimberly Mueller issued her order March 19, identifying Colette Peters as the nominated receiver. Peters, who was Oregon’s first female corrections director and known as a reformer, ran the scandal-plagued federal prison system for 30 months until President Donald Trump took office in January. During her tenure, she closed a women’s prison in Dublin, east of Oakland, that had become known as the “rape club.”
Michael Bien, who represents prisoners with mental illness in the long-running prison lawsuit, said Peters is a good choice. Bien said Peters’ time in Oregon and Washington, D.C., showed that she “kind of buys into the fact that there are things we can do better in the American system.”
“We took strong objection to many things that happened under her tenure at the BOP, but I do think that this is a different job and she’s capable of doing it,” said Bien, whose firm also represents women who were housed at the shuttered federal women’s prison.
California corrections officials called Peters “highly qualified” in a statement, while Gov. Gavin Newsom’s office did not immediately comment. Mueller gave the parties until March 28 to show cause why Peters should not be appointed.
Peters is not talking to the media at this time, Bien said. The judge said Peters is to be paid $400,000 a year, prorated for the four-month period.
About 34,000 people incarcerated in California prisons have been diagnosed with serious mental illnesses, representing more than a third of California’s prison population, who face harm because of the state’s noncompliance, Mueller said.
Appointing a receiver is a rare step taken when federal judges feel they have exhausted other options. A receiver took control of Alabama’s correctional system in 1976, and they have otherwise been used to govern prisons and jails only about a dozen times, mostly to combat poor conditions caused by overcrowding. Attorneys representing inmates in Arizona have asked a judge to take over prison health care there.
Mueller’s appointment of a receiver comes nearly 20 years after a different federal judge seized control of California’s prison medical system and installed a receiver, currently J. Clark Kelso, with broad powers to hire, fire, and spend the state’s money.
California officials initially said in August that they would not oppose a receivership for the mental health program provided that the receiver was also Kelso, saying then that federal control “has successfully transformed medical care” in California prisons. But Kelso withdrew from consideration in September, as did two subsequent candidates. Kelso said he could not act “zealously and with fidelity as receiver in both cases.”
Both cases have been running for so long that they are now overseen by a second generation of judges. The original federal judges, in a legal battle that reached the U.S. Supreme Court, more than a decade ago forced California to significantly reduce prison crowding in a bid to improve medical and mental health care for incarcerated people.
State officials in court filings defended their improvements over the decades. Prisoners’ attorneys countered that treatment remains poor, as evidenced in part by the system’s record-high suicide rate, topping 31 suicides per 100,000 prisoners, nearly double that in federal prisons.
“More than a quarter of the 30 class-members who died by suicide in 2023 received inadequate care because of understaffing,” prisoners’ attorneys wrote in January, citing the prison system’s own analysis. One prisoner did not receive mental health appointments for seven months “before he hanged himself with a bedsheet.”
They argued that the November passage of a ballot measure increasing criminal penalties for some drug and theft crimes is likely to increase the prison population and worsen staffing shortages.
California officials argued in January that Mueller isn’t legally justified in appointing a receiver because “progress has been slow at times but it has not stalled.”
Mueller has countered that she had no choice but to appoint an outside professional to run the prisons’ mental health program, given officials’ intransigence even after she held top officials in contempt of court and levied fines topping $110 million in June. Those extreme actions, she said, only triggered more delays.
The 9th U.S. Circuit Court of Appeals on March 19 upheld Mueller’s contempt ruling but said she didn’t sufficiently justify calculating the fines by doubling the state’s monthly salary savings from understaffing prisons. It upheld the fines to the extent that they reflect the state’s actual salary savings but sent the case back to Mueller to justify any higher penalty.
Mueller had been set to begin additional civil contempt proceedings against state officials for their failure to meet two other court requirements: adequately staffing the prison system’s psychiatric inpatient program and improving suicide prevention measures. Those could bring additional fines topping tens of millions of dollars.
But she said her initial contempt order has not had the intended effect of compelling compliance. Mueller wrote as far back as July that additional contempt rulings would also be likely to be ineffective as state officials continued to appeal and seek delays, leading “to even more unending litigation, litigation, litigation.”
She went on to foreshadow her latest order naming a receiver in a preliminary order: “There is one step the court has taken great pains to avoid. But at this point,” Mueller wrote, “the court concludes the only way to achieve full compliance in this action is for the court to appoint its own receiver.”
This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.
If you or someone you know may be experiencing a mental health crisis, contact the 988 Suicide & Crisis Lifeline by dialing or texting “988.”
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Kaiser Health News
Amid Plummeting Diversity at Medical Schools, a Warning of DEI Crackdown’s ‘Chilling Effect’

The Trump administration’s crackdown on DEI programs could exacerbate an unexpectedly steep drop in diversity among medical school students, even in states like California, where public universities have been navigating bans on affirmative action for decades. Education and health experts warn that, ultimately, this could harm patient care.
Since taking office, President Donald Trump has issued a handful of executive orders aimed at terminating all diversity, equity, and inclusion, or DEI, initiatives in federally funded programs. And in his March 4 address to Congress, he described the Supreme Court’s 2023 decision banning the consideration of race in college and university admissions as “brave and very powerful.”
Last month, the Education Department’s Office for Civil Rights — which lost about 50% of its staff in mid-March — directed schools, including postsecondary institutions, to end race-based programs or risk losing federal funding. The “Dear Colleague” letter cited the Supreme Court’s decision.
Paulette Granberry Russell, president and CEO of the National Association of Diversity Officers in Higher Education, said that “every utterance of ‘diversity’ is now being viewed as a violation or considered unlawful or illegal.” Her organization filed a lawsuit challenging Trump’s anti-DEI executive orders.
While California and eight other states — Arizona, Florida, Idaho, Michigan, Nebraska, New Hampshire, Oklahoma, and Washington — had already implemented bans of varying degrees on race-based admissions policies well before the Supreme Court decision, schools bolstered diversity in their ranks with equity initiatives such as targeted scholarships, trainings, and recruitment programs.
But the court’s decision and the subsequent state-level backlash — 29 states have since introduced bills to curb diversity initiatives, according to data published by the Chronicle of Higher Education — have tamped down these efforts and led to the recent declines in diversity numbers, education experts said.
After the Supreme Court’s ruling, the numbers of Black and Hispanic medical school enrollees fell by double-digit percentages in the 2024-25 school year compared with the previous year, according to the Association of American Medical Colleges. Black enrollees declined 11.6%, while the number of new students of Hispanic origin fell 10.8%. The decline in enrollment of American Indian or Alaska Native students was even more dramatic, at 22.1%. New Native Hawaiian or other Pacific Islander enrollment declined 4.3%.
“We knew this would happen,” said Norma Poll-Hunter, AAMC’s senior director of workforce diversity. “But it was double digits — much larger than what we anticipated.”
The fear among educators is the numbers will decline even more under the new administration.
At the end of February, the Education Department launched an online portal encouraging people to “report illegal discriminatory practices at institutions of learning,” stating that students should have “learning free of divisive ideologies and indoctrination.” The agency later issued a “Frequently Asked Questions” document about its new policies, clarifying that it was acceptable to observe events like Black History Month but warning schools that they “must consider whether any school programming discourages members of all races from attending.”
“It definitely has a chilling effect,” Poll-Hunter said. “There is a lot of fear that could cause institutions to limit their efforts.”
Numerous requests for comment from medical schools about the impact of the anti-DEI actions went unreturned. University presidents are staying mum on the issue to protect their institutions, according to reporting from The New York Times.
Utibe Essien, a physician and UCLA assistant professor, said he has heard from some students who fear they won’t be considered for admission under the new policies. Essien, who co-authored a study on the effect of affirmative action bans on medical schools, also said students are worried medical schools will not be as supportive toward students of color as in the past.
“Both of these fears have the risk of limiting the options of schools folks apply to and potentially those who consider medicine as an option at all,” Essien said, adding that the “lawsuits around equity policies and just the climate of anti-diversity have brought institutions to this place where they feel uncomfortable.”
In early February, the Pacific Legal Foundation filed a lawsuit against the University of California-San Francisco’s Benioff Children’s Hospital Oakland over an internship program designed to introduce “underrepresented minority high school students to health professions.”
Attorney Andrew Quinio filed the suit, which argues that its plaintiff, a white teenager, was not accepted to the program after disclosing in an interview that she identified as white.
“From a legal standpoint, the issue that comes about from all this is: How do you choose diversity without running afoul of the Constitution?” Quinio said. “For those who want diversity as a goal, it cannot be a goal that is achieved with discrimination.”
UC Health spokesperson Heather Harper declined to comment on the suit on behalf of the hospital system.
Another lawsuit filed in February accuses the University of California of favoring Black and Latino students over Asian American and white applicants in its undergraduate admissions. Specifically, the complaint states that UC officials pushed campuses to use a “holistic” approach to admissions and “move away from objective criteria towards more subjective assessments of the overall appeal of individual candidates.”
The scrutiny of that approach to admissions could threaten diversity at the UC-Davis School of Medicine, which for years has employed a “race-neutral, holistic admissions model” that reportedly tripled enrollment of Black, Latino, and Native American students.
“How do you define diversity? Does it now include the way we consider how someone’s lived experience may be influenced by how they grew up? The type of school, the income of their family? All of those are diversity,” said Granberry Russell, of the National Association of Diversity Officers in Higher Education. “What might they view as an unlawful proxy for diversity equity and inclusion? That’s what we’re confronted with.”
California Attorney General Rob Bonta, a Democrat, recently joined other state attorneys general to issue guidance urging that schools continue their DEI programs despite the federal messaging, saying that legal precedent allows for the activities. California is also among several states suing the administration over its deep cuts to the Education Department.
If the recent decline in diversity among newly enrolled students holds or gets worse, it could have long-term consequences for patient care, academic experts said, pointing toward the vast racial disparities in health outcomes in the U.S., particularly for Black people.
A higher proportion of Black primary care doctors is associated with longer life expectancy and lower mortality rates among Black people, according to a 2023 study published by the JAMA Network.
Physicians of color are also more likely to build their careers in medically underserved communities, studies have shown, which is increasingly important as the AAMC projects a shortage of up to 40,400 primary care doctors by 2036.
“The physician shortage persists, and it’s dire in rural communities,” Poll-Hunter said. “We know that diversity efforts are really about improving access for everyone. More diversity leads to greater access to care — everyone is benefiting from it.”
This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.
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Kaiser Health News
Tribal Health Leaders Say Medicaid Cuts Would Decimate Health Programs

As Congress mulls potentially massive cuts to federal Medicaid funding, health centers that serve Native American communities, such as the Oneida Community Health Center near Green Bay, Wisconsin, are bracing for catastrophe.
That’s because more than 40% of the about 15,000 patients the center serves are enrolled in Medicaid. Cuts to the program would be detrimental to those patients and the facility, said Debra Danforth, the director of the Oneida Comprehensive Health Division and a citizen of the Oneida Nation.
“It would be a tremendous hit,” she said.
The facility provides a range of services to most of the Oneida Nation’s 17,000 people, including ambulatory care, internal medicine, family practice, and obstetrics. The tribe is one of two in Wisconsin that have an “open-door policy,” Danforth said, which means that the facility is open to members of any federally recognized tribe.
But Danforth and many other tribal health officials say Medicaid cuts would cause service reductions at health facilities that serve Native Americans.
Indian Country has a unique relationship to Medicaid, because the program helps tribes cover chronic funding shortfalls from the Indian Health Service, the federal agency responsible for providing health care to Native Americans.
Medicaid has accounted for about two-thirds of third-party revenue for tribal health providers, creating financial stability and helping facilities pay operational costs. More than a million Native Americans enrolled in Medicaid or the closely related Children’s Health Insurance Program also rely on the insurance to pay for care outside of tribal health facilities without going into significant medical debt. Tribal leaders are calling on Congress to exempt tribes from cuts and are preparing to fight to preserve their access.
“Medicaid is one of the ways in which the federal government meets its trust and treaty obligations to provide health care to us,” said Liz Malerba, director of policy and legislative affairs for the United South and Eastern Tribes Sovereignty Protection Fund, a nonprofit policy advocacy organization for 33 tribes spanning from Texas to Maine. Malerba is a citizen of the Mohegan Tribe.
“So we view any disruption or cut to Medicaid as an abrogation of that responsibility,” she said.
Tribes face an arduous task in providing care to a population that experiences severe health disparities, a high incidence of chronic illness, and, at least in western states, a life expectancy of 64 years — the lowest of any demographic group in the U.S. Yet, in recent years, some tribes have expanded access to care for their communities by adding health services and providers, enabled in part by Medicaid reimbursements.
During the last two fiscal years, five urban Indian organizations in Montana saw funding growth of nearly $3 million, said Lisa James, director of development for the Montana Consortium for Urban Indian Health, during a webinar in February organized by the Georgetown University Center for Children and Families and the National Council of Urban Indian Health.
The increased revenue was “instrumental,” James said, allowing clinics in the state to add services that previously had not been available unless referred out for, including behavioral health services. Clinics were also able to expand operating hours and staffing.
Montana’s five urban Indian clinics, in Missoula, Helena, Butte, Great Falls, and Billings, serve 30,000 people, including some who are not Native American or enrolled in a tribe. The clinics provide a wide range of services, including primary care, dental care, disease prevention, health education, and substance use prevention.
James said Medicaid cuts would require Montana’s urban Indian health organizations to cut services and limit their ability to address health disparities.
American Indian and Alaska Native people under age 65 are more likely to be uninsured than white people under 65, but 30% rely on Medicaid compared with 15% of their white counterparts, according to KFF data for 2017 to 2021. More than 40% of American Indian and Alaska Native children are enrolled in Medicaid or CHIP, which provides health insurance to kids whose families are not eligible for Medicaid. KFF is a health information nonprofit that includes KFF Health News.
A Georgetown Center for Children and Families report from January found the share of residents enrolled in Medicaid was higher in counties with a significant Native American presence. The proportion on Medicaid in small-town or rural counties that are mostly within tribal statistical areas, tribal subdivisions, reservations, and other Native-designated lands was 28.7%, compared with 22.7% in other small-town or rural counties. About 50% of children in those Native areas were enrolled in Medicaid.
The federal government has already exempted tribes from some of Trump’s executive orders. In late February, Department of Health and Human Services acting general counsel Sean Keveney clarified that tribal health programs would not be affected by an executive order that diversity, equity, and inclusion government programs be terminated, but that the Indian Health Service is expected to discontinue diversity and inclusion hiring efforts established under an Obama-era rule.
HHS Secretary Robert F. Kennedy Jr. also rescinded the layoffs of more than 900 IHS employees in February just hours after they’d received termination notices. During Kennedy’s Senate confirmation hearings, he said he would appoint a Native American as an assistant HHS secretary. The National Indian Health Board, a Washington, D.C.-based nonprofit that advocates for tribes, in December endorsed elevating the director of the Indian Health Service to assistant secretary of HHS.
Jessica Schubel, a senior health care official in Joe Biden’s White House, said exemptions won’t be enough.
“Just because Native Americans are exempt doesn’t mean that they won’t feel the impact of cuts that are made throughout the rest of the program,” she said.
State leaders are also calling for federal Medicaid spending to be spared because cuts to the program would shift costs onto their budgets. Without sustained federal funding, which can cover more than 70% of costs, state lawmakers face decisions such as whether to change eligibility requirements to slim Medicaid rolls, which could cause some Native Americans to lose their health coverage.
Tribal leaders noted that state governments do not have the same responsibility to them as the federal government, yet they face large variations in how they interact with Medicaid depending on their state programs.
President Donald Trump has made seemingly conflicting statements about Medicaid cuts, saying in an interview on Fox News in February that Medicaid and Medicare wouldn’t be touched. In a social media post the same week, Trump expressed strong support for a House budget resolution that would likely require Medicaid cuts.
The budget proposal, which the House approved in late February, requires lawmakers to cut spending to offset tax breaks. The House Committee on Energy and Commerce, which oversees spending on Medicaid and Medicare, is instructed to slash $880 billion over the next decade. The possibility of cuts to the program that, together with CHIP, provides insurance to 79 million people has drawn opposition from national and state organizations.
The federal government reimburses IHS and tribal health facilities 100% of billed costs for American Indian and Alaska Native patients, shielding state budgets from the costs.
Because Medicaid is already a stopgap fix for Native American health programs, tribal leaders said it won’t be a matter of replacing the money but operating with less.
“When you’re talking about somewhere between 30% to 60% of a facility’s budget is made up by Medicaid dollars, that’s a very difficult hole to try and backfill,” said Winn Davis, congressional relations director for the National Indian Health Board.
Congress isn’t required to consult tribes during the budget process, Davis added. Only after changes are made by the Centers for Medicare & Medicaid Services and state agencies are tribes able to engage with them on implementation.
The amount the federal government spends funding the Native American health system is a much smaller portion of its budget than Medicaid. The IHS projected billing Medicaid about $1.3 billion this fiscal year, which represents less than half of 1% of overall federal spending on Medicaid.
“We are saving more lives,” Malerba said of the additional services Medicaid covers in tribal health care. “It brings us closer to a level of 21st century care that we should all have access to but don’t always.”
This article was published with the support of the Journalism & Women Symposium (JAWS) Health Journalism Fellowship, assisted by grants from The Commonwealth Fund.
KFF 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 KFF.
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Mississippi Today7 days ago
Lawmakers used to fail passing a budget over policy disagreement. This year, they failed over childish bickering.
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Local News7 days ago
Southern Miss Professor Inducted into U.S. Hydrographer Hall of Fame
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Mississippi Today7 days ago
On this day in 1873, La. courthouse scene of racial carnage
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News from the South - Alabama News Feed5 days ago
Foley man wins Race to the Finish as Kyle Larson gets first win of 2025 Xfinity Series at Bristol
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News from the South - Alabama News Feed6 days ago
Federal appeals court upholds ruling against Alabama panhandling laws
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News from the South - Texas News Feed7 days ago
1 dead after 7 people shot during large gathering at Crosby gas station, HCSO says
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News from the South - Florida News Feed7 days ago
Jacksonville University only school with 2 finalist teams in NASA’s 2025 Human Lander Challenge
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News from the South - Missouri News Feed7 days ago
Insects as food? ‘We are largely ignoring the largest group of organisms on earth’