Sociologist Elena Portacolone was taken aback. Many of the older adults in San Francisco she visited at home for a research project were confused when she came to the door. They’d forgotten the appointment or couldn’t remember speaking to her.

It seemed clear they had some type of cognitive impairment. Yet they were living alone.

Portacolone, an associate professor at the University of California-San Francisco, wondered how common this was. Had anyone examined this group? How were they managing?

When she reviewed the research literature more than a decade ago, there was little there. “I realized this is a largely invisible population,” she said.

Portacolone got to work and now leads the Living Alone With Cognitive Impairment Project at UCSF. The project estimates that that at least 4.3 million people 55 or older who have cognitive impairment or dementia live alone in the United States.

About half have trouble with daily activities such as bathing, eating, cooking, shopping, taking medications, and managing money, according to their research. But only 1 in 3 received help with at least one such activity.

Compared with other older adults who live by themselves, people living alone with cognitive impairment are older, more likely to be women, and disproportionately Black or Latino, with lower levels of education, wealth, and homeownership. Yet only 21% qualify for publicly funded programs such as Medicaid that pay for aides to provide services in the home.

In a health care system that assumes older adults have family caregivers to help them, “we realized this population is destined to fall through the cracks,” Portacolone said.

Imagine what this means. As memory and thinking problems accelerate, these seniors can lose track of bills, have their electricity shut off, or be threatened with eviction. They might stop shopping (it’s too overwhelming) or cooking (it’s too hard to follow recipes). Or they might be unable to communicate clearly or navigate automated phone systems.

A variety of other problems can ensue, including social isolation, malnutrition, self-neglect, and susceptibility to scams. Without someone to watch over them, older adults on their own may experience worsening health without anyone noticing or struggle with dementia without ever being diagnosed.

Should vulnerable seniors live this way?

For years, Portacolone and her collaborators nationwide have followed nearly 100 older adults with cognitive impairment who live alone. She listed some concerns people told researchers they worried most about: “Who do I trust? When is the next time I’m going to forget? If I think I need more help, where do I find it? How do I hide my forgetfulness?”

Jane Lowers, an assistant professor at the Emory University School of Medicine, has been studying “kinless” adults in the early stages of dementia — those without a live-in partner or children nearby. Their top priority, she told me, is “remaining independent for as long as possible.”

Seeking to learn more about these seniors’ experiences, I contacted the National Council of Dementia Minds. The organization last year started a biweekly online group for people living alone with dementia. Its staffers arranged a Zoom conversation with five people, all with early-to-moderate dementia.

One was Kathleen Healy, 60, who has significant memory problems and lives alone in Fresno, California.

“One of the biggest challenges is that people don’t really see what’s going on with you,” she said. “Let’s say my house is a mess or I’m sick or I’m losing track of my bills. If I can get myself together, I can walk out the door and nobody knows what’s going on.”

An administrator with the city of Fresno for 28 years, Healy said she had to retire in 2019 “because my brain stopped working.” With her pension, she’s able to cover her expenses, but she doesn’t have significant savings or assets.

Healy said she can’t rely on family members who have troubles of their own. (Her 83-year-old mother has dementia and lives with Healy’s sister.) The person who checks on her most frequently is an ex-boyfriend.

“I don’t really have anybody,” she said, choking up.

David West, 62, is a divorced former social worker with Lewy body dementia, which can impair thinking and concentration and cause hallucinations. He lives alone in an apartment in downtown Fort Worth, Texas.

“I will not survive this in the end — I know that — but I’m going to meet this with resilience,” he said when I spoke with him by phone in June.

Since his diagnosis nearly three years ago, West has filled his life with exercise and joined three dementia support groups. He spends up to 20 hours a week volunteering, at a restaurant, a food bank, a museum, and Dementia Friendly Fort Worth.

Still, West knows that his illness will progress and that this period of relative independence is limited. What will he do then? Although he has three adult children, he said, he can’t expect them to take him in and become dementia caregivers — an extraordinarily stressful, time-intensive, financially draining commitment.

“I don’t know how it’s going to work out,” he said.

Denise Baker, 80, a former CIA analyst, lives in a 100-year-old house in Asheville, North Carolina, with her dog, Yolo. She has cognitive problems related to a stroke 28 years ago, Alzheimer’s disease, and serious vision impairment that prevents her from driving. Her adult daughters live in Massachusetts and Colorado.

“I’m a very independent person, and I find that I want to do everything I possibly can for myself,” Baker told me, months before Asheville was ravaged by severe flooding. “It makes me feel better about myself.”

She was lucky in the aftermath of Hurricane Helene: Baker lives on a hill in West Asheville that was untouched by floodwaters. In the week immediately after the storm, she filled water jugs every day at an old well near her house and brought them back in a wheelbarrow.  Though her power was out, she had plenty of food and neighbors looked in on her. 

“I’m absolutely fine,” she told me on the phone in early October after a member of Dementia Friendly Western North Carolina drove to Baker’s house to check in on her, upon my request. Baker is on the steering committee of that organization.

Baker once found it hard to ask for assistance, but these days she relies routinely on friends and hired help. A few examples: Elaine takes her grocery shopping every Monday. Roberta comes once a month to help with her mail and finances. Jack mows her lawn. Helen offers care management advice. Tom, a cab driver she connected with through Buncombe County’s transportation program for seniors, is her go-to guy for errands.

Her daughter Karen in Boston has the authority to make legal and health care decisions when Baker can no longer do so. When that day comes — and Baker knows it will — she expects her long-term care insurance policy to pay for home aides or memory care. Until then, “I plan to do as much as I can in the state I’m in,” she said.

Much can be done to better assist older adults with dementia who are on their own, said Elizabeth Gould, co-director of the National Alzheimer’s and Dementia Resource Center at RTI International, a nonprofit research institute. “If health care providers would just ask ‘Who do you live with?’” she said, “that could open the door to identifying who might need more help.”

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit kffhealthnews.org/columnists to submit your requests or tips.

More than half of the 410 hospitals in California have at least one building that likely wouldn’t be able to operate after a major earthquake hit their region, and with many institutions claiming they don’t have the money to meet a 2030 legal deadline for earthquake retrofits, the state is now granting relief to some while ramping up pressure on others to get the work done.

Gov. Gavin Newsom in September vetoed legislation championed by the California Hospital Association that would have allowed all hospitals to apply for an extension of the deadline for up to five years. Instead, the Democratic governor signed a more narrowly tailored bill that allows small, rural, or “distressed” hospitals to get an extension of up to three years.

“It’s an expensive thing and a complicated thing for hospitals — independent hospitals in particular,” said Elizabeth Mahler, an associate chief medical officer for Alameda Health System, which serves Northern California’s East Bay and is undertaking a $25 million retrofit of its hospital in Alameda, on an island beside Oakland.

The debate over how seismically safe California hospitals should be dates to the 1971 Sylmar quake near Los Angeles, which prompted a law requiring new hospitals to be built to withstand an earthquake and continue operating. In 1994, after the magnitude 6.7 Northridge quake killed at least 57 people, lawmakers required existing facilities to be upgraded.

The two laws have left California hospitals with two sets of standards to meet. The first — which originally had a deadline of 2008 but was pushed to 2020 — required hospital buildings to stay standing after an earthquake. About 20 facilities have yet to meet that requirement for at least one of their buildings, although some have received extensions from the state.

Many more — 674 buildings, spread across 251 licensed hospitals — do not meet the second set of standards, which require hospital facilities to remain functional in the event of a major earthquake. That work is supposed to be done by 2030.

“The importance of it is hard to argue with,” said Jonathan Stewart, a professor at UCLA’s Samueli School of Engineering, citing a 2023 earthquake in Turkey that damaged or destroyed multiple hospitals. “There were a number of hospitals that were intact but not usable. That’s better than a collapsed structure. But still not what you need at a time of emergency like that.”

The influential hospital industry has unsuccessfully lobbied lawmakers for years to extend the 2030 deadline, though the state has granted various extensions to specific facilities. Newsom’s signature on one of the three bills addressing the issue this year represents a partial victory for the industry.

Hospital administrators have long complained about the steep cost of seismic retrofits.

“While hospitals are working to meet these requirements, many will simply not make the 2030 deadline and be forced by state law to close,” wrote Carmela Coyle, president and CEO of the California Hospital Association, in a letter to Newsom before he vetoed the CHA bill. A 2019 Rand Corp. study paid for by the CHA pinned the price of meeting the 2030 standards at between $34 billion and $143 billion statewide.

Labor unions representing nurses and other medical workers, however, say the hospitals have had plenty of time to get their buildings into compliance, and that most have the money to do so.

“They’ve had 30 years to do this,” Cathy Kennedy, a nurse in Roseville and one of the presidents of the California Nurses Association, said in an interview prior to the governor’s action. “We are kicking the can down the road year after year, and unfortunately, lives are going to be lost.”

In his veto message on the CHA bill, Newsom wrote that a blanket five-year extension wasn’t justified, and that any extension “should be limited in scope, granted only on a case-by-case basis to hospitals with demonstrated need and a clear path to compliance, and in combination with strong accountability and enforcement mechanisms.”

He also vetoed a bill directed specifically at helping several hospitals operated by Providence, a Catholic hospital chain.

But he signed a third bill, which allows small, rural, and “critical access” hospitals, and some others, to apply for a three-year extension, and directs the Department of Health Care Access and Information to offer them “technical assistance” in meeting the deadline.

The state designates 37 hospitals as providing “critical access,” while 56 are considered “small,” meaning they have fewer than 50 beds, 59 are considered “rural,” and 32 are “district” hospitals, meaning they are funded by special government entities called “health care districts.” They can seek a three-year extension as long as they submit a seismic compliance plan and identify milestones for implementing it.

Debi Stebbins, executive director of the Alameda Health Care District, which owns the Alameda Hospital buildings, said small hospitals face a big challenge. Even though Alameda is very close to San Francisco and Oakland, the tunnels, bridges, and ferries that connect it to the mainland could easily be shut in an emergency, making the island’s hospital a lifeline.

“It’s an unfunded mandate,” Stebbins said of the state’s 2030 deadline.

The Rand study estimated the average cost of a retrofit at more than $92 million per building, but the amount could vary greatly depending on whether it’s a building that houses hospital beds.

Small and rural hospitals can get some aid from the state via grants financed by the California Electronic Cigarette Excise Tax, but HCAI spokesperson Andrew DiLuccia said it would yield just $2-3 million total annually. He added that the Small and Rural Hospital Relief Program has also received a one-time infusion of $50 million from a tax on health insurers to help with the seismic work.

Labor unions and critics of the extensions often point to the large profits that some hospitals reap: A California Health Care Foundation report published in August found that California’s hospitals made $3.2 billion in profit during the first quarter of 2024. The study notes that there “continues to be wide variation in financial performance among hospitals, with the bottom quartile showing a net income margin of -5%, compared to +13% for the top quartile.”

Stebbins has had to help her district figure out a plan.

After Newsom vetoed a bill in 2022 that would have granted an extension on the seismic retrofit deadline specifically for Alameda Hospital, the hospital system and its partner health care district used parcel tax money to help back a loan.

The cost to retrofit will be about $25 million, and the system is also investing millions more into other projects, such as a new skilled nursing facility. The construction work is set to be completed in 2027.

“No one wants things crashing in an earthquake or anything else, but at the same time, it’s a burden,” Mahler, the Alameda Health System associate chief medical officer, said. “How do we make sure that they get what they need to stay open?”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

STONE MOUNTAIN, Ga. — As principal of Dunaire Elementary School, Sean Deas has seen firsthand the struggles faced by children living in extended-stay hotels. About 10% of students at his school, just east of Atlanta, live in one.

The children, Deas said, often have been exposed to violence on hotel properties, exhibit aggression or anxiety from living in a crowded single room, and face food insecurity because some hotel rooms don’t have kitchens.

“Social trauma is the biggest challenge” when students first arrive, Deas said. “We hear a lot about sleep problems.” To meet students’ needs, Deas developed a schoolwide program featuring counselors, a food pantry, and special protocols for handling those who may fall asleep in class.

“Beyond the teaching, there’s a social part,” he said. “We have to find ways to support the families as well.”

Extended-stay hotels are often a last resort for low-income families trying to find housing. Nationally, more than 100,000 students lived in extended-stay hotels in 2022, according to the Department of Education, though officials say that is likely an undercount. Children living in hotels are considered homeless under federal law, and in some Atlanta-area counties about 40% of homeless students live in this kind of housing, according to local officials.

And with rising rents and evictions, and decreased access to federal public housing, the use of extended-stay hotels as a long-term option is becoming more frequent. Like other forms of homelessness, hotel living can lead to — or exacerbate — physical and mental health problems for children, say advocates for families and researchers who study homelessness.

In the Atlanta area, inspections of extended-stay hotels have revealed ventilation issues, insect infestations, mold, and other health threats. Children living there also can experience or witness crime and gun violence. The increasing use of extended-stay hotels is a warning sign, observers said, a reflection of the lack of sufficient affordable housing policy in the U.S.

And the crisis is having “lifelong consequences,” said Sarah Saadian of the National Low Income Housing Coalition. “The only way that we can really address that shortage is if there are significant federal resources at scale. Build more housing and bridge the gap between rents and wages.”

Often, evictions force families into hotels — and can keep them trapped there. Many landlords refuse to rent to people with evictions in their credit history, even if the tenant isn’t responsible for the displacement, said Joy Monroe, founder and CEO of the Single Parent Alliance & Resource Center, or SPARC, a nonprofit group in metro Atlanta that has helped hundreds of families move from hotels to apartments or rental homes.

Black women and other women of color, often with kids, are evicted at much higher rates and are more likely to find themselves living in extended-stay hotels, advocates say.

Some residents are also families fleeing domestic violence, they say.

Hotels often don’t require security deposits, application fees, or background checks, thus providing immediate relief for families seeking shelter. While there are higher-end options, the average rate for an economy-class extended-stay room was $56.68 a night during the first three months of 2024, according to the Highland Group, a research firm that focuses on the hotel sector — which works out to more than $1,700 a month.

And while the rooms offer respite from other forms of homelessness — like sleeping in a car or in a tent — a hotel “is no place to raise children,” said Michael Bryant, CEO of New Life Community Alliance, which helps families in South Dekalb, a part of metro Atlanta, move from hotels to homes.

Children living in hotels are often behind on vaccinations, and they may end up in the emergency room because of delays in care, said Gary Kirkilas, a pediatrician in Phoenix who helps children, teens, and families who are presently homeless or at risk of homelessness. About 75% of children with unstable housing whom he sees have at least one developmental delay, and others experience significant emotional and behavioral issues.

Tanazia Scott, who has bounced between two extended-stay hotels for several months, said her three children “feel depressed and upset” over hotel life.

An eviction sent Kassandra Norman, 58, and her two daughters into a months-long journey of staying in Atlanta-area hotels. For three months, they slept in a car outside a convenience store. “It’s hard to do homework in a car and in the hotel,” said 19-year-old Kazuri Taylor, Norman’s younger daughter.

Some hotels prohibit kids from playing outside in their parking lots, leading to additional stress, advocates say. That was the reason Yvonne Thomas, 45, and her family were evicted from an extended-stay hotel in DeKalb County, she said: “They put us out for nothing.”

And there are other problems. More than a dozen students at Dunaire Elementary live on an extended-stay property called Haven Hotel. In August, DeKalb County’s code enforcement division said the hotel had “not maintained minimum life safety standards.” Roaches and spiders live in rooms and breezeways, according to state health inspection reports. Residents say they have been charged $1 for a roll of toilet paper.

The hotel’s owner and manager could not be reached for comment after multiple attempts.

“No one is talking about these families,” said Sue Sullivan, a community advocate and a volunteer with the Motel to Home coalition in Atlanta, who brings toys, bookbags, food, and toiletries on her hotel visits.

A February public health inspection at another DeKalb County hotel found several rooms with poor ventilation, insect infestation, and mold, among other potential health threats. In May, two people were fatally shot there.

Children who witness violence can develop anxiety, depression, and other disorders, said Charles Moore, director of the Urban Health Initiative at Emory University School of Medicine. “They can feel emotional aftershocks,” said Moore, who has visited Atlanta-area hotels.

Closing such hotels, however, can hurt families, given the shortage of affordable housing, the absence of national federal renter protections, and a dearth of places to go, said Terri Lewinson, an associate professor at the Dartmouth Institute for Health Policy and Clinical Practice. Extended-stay hotels do “offer a low-barrier option for families who have no other options,” she said.

To alleviate the housing problem, county officials and nonprofit organizations around the country have been creatively filling the gap. In the Seattle area, for example, King County officials purchased hotels and converted them into affordable housing, said Mark Skinner of the Highland Group.

In metro Atlanta, SPARC and the local United Way’s Motel to Home offer funding to help people transition into an apartment.

In DeKalb County, where Dunaire Elementary School is located, more than a third of the 1,300 homeless students live in hotels, according to Commissioner Ted Terry.

“I hope we can rescue the children,” he said. “It’s not a safe environment for them.”

Advocates who seek to help people living in hotels propose the construction of more affordable housing and stronger protections for renters against eviction. The federal government has failed to invest in repairs needed to maintain current public housing units, and 25-year-old legislation effectively prohibits the construction of new public housing.

It’s also “extremely fast, easy, and cheap” to evict tenants in Georgia, said Taylor Shelton, an associate professor of geosciences at Georgia State University, whose research focuses on social inequalities and urban spaces. “The playing field is tilted heavily toward landlords.”

Under such circumstances, the cycle of poverty is difficult to break, said Jamie Rush, a senior staff attorney at the Southern Poverty Law Center. “Most parents would want their kids in a safe, stable home,” Rush said. “You can’t budget your way out of poverty.”

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DENVER — On a bustling street corner one recent afternoon outside the offices of the Harm Reduction Action Center, employees of the education and advocacy nonprofit handed out free naloxone kits to passersby.

Distributing the opioid reversal medication is essential to the center’s work to reduce fatal overdoses in the community. But how long the group can continue doing so is in question. The center depends on Colorado’s Opioid Antagonist Bulk Purchase Fund, also known as the Naloxone Bulk Purchase Fund, which now lacks a recurring source of money — despite hundreds of millions of dollars in national opioid lawsuit settlement cash flowing into the state.

“Our concern is that we won’t have access to naloxone and that means that more people will die of a very preventable overdose,” said Lisa Raville, executive director of the center.

The bulk fund was created in 2019 to provide free naloxone to organizations like the Harm Reduction Action Center. The fund’s annual budget grew from just over $300,000 in fiscal year 2019 to more than $8.5 million in fiscal 2022, according to legislative reports by the state’s Overdose Prevention Unit.

The fund has boosted the availability of the medication throughout Colorado, which passed a law in 2013 that gives legal immunity to medical providers who prescribe the drug and to any person who administers it to someone suffering an overdose. The fund currently provides more than $550,000 worth of naloxone kits to various entities each month.

Despite the increased availability of naloxone, fatal opioid overdoses continued to rise. In 2023, 1,292 people in Colorado died of an opioid overdose, according to data from the Colorado Department of Public Health and Environment. That was 132 more people than the year before.

And now, one of the fund’s major money sources, the American Rescue Plan passed by Congress in response to the covid-19 pandemic, is set to expire next year. As of September, the Colorado fund had $8.6 million left, according to Vanessa Bernal, a spokesperson for the state health department.

The fund got a boost in September when the state’s Behavioral Health Administration provided it with $3 million from a one-time Substance Use Prevention, Treatment, and Recovery Services Block Grant and nearly $850,000 through a State Opioid Response Grant. Colorado Attorney General Phil Weiser said his office will “ensure that the necessary budget remains in place for the next year.”

The amount of that funding and where it will come from has yet to be determined, and long-term solutions are still being weighed, as well. One option to shore up the fund beyond the next year is to use Colorado’s share of settlement funds from the national opioid lawsuits, said Mary Sylla, former director of overdose prevention policy and strategy at the National Harm Reduction Coalition.

“It’s just completely ironic that something that addresses the opioid overdose crisis is underfunded at the very same time that these settlement funds are flowing,” Sylla said. “There couldn’t be a better use for them.”

As of July, Colorado had received and distributed more than $110 million in opioid settlement money to regions, local governments, state entities, and infrastructure projects, according to the Colorado attorney general’s office, and the total is expected to reach more than $750 million by 2038.

However, more than half of the settlement money Colorado has received thus far has already been disbursed to its 19 Regional Opioid Abatement Councils, which have created their own plans to distribute money to programs such as substance abuse treatment centers, public education campaigns, and training for emergency providers.

For example, Denver’s council, which has received more than $18 million since 2022, has disbursed money to organizations in two- and three-year contracts, the majority not including the purchase of naloxone.

“We thought we could all continue to get [naloxone] from the state health department and the Naloxone Bulk Purchase Fund,” Raville said.

The Denver council is working on a plan for the coming years, expected to come out in mid-2025, and is considering the bulk fund’s dwindling money, said Marie Curran, program coordinator for Denver’s opioid abatement funds.

Lawrence Pacheco, a spokesperson for the attorney general’s office, which manages 10% of the state’s opioid settlement dollars, said the office “is working on options to ensure that this lifesaving medication can continue to be part of the state’s effort to abate the opioid crisis.” Those options have not yet been made public.

California, where Sylla works, has used settlement money for a distribution program that’s similar to Colorado’s. In Washington and Kentucky, as part of the states’ settlements with Teva Pharmaceuticals, tens of thousands of free naloxone kits will be available to residents. Each state uses its opioid settlement funds differently, and while many provide naloxone to residents in some manner, including via vending machines, there is no central tracking of naloxone distribution programs.

Over the past five years, Colorado’s fund has distributed more than half a million doses of the opioid reversal drug to hundreds of organizations and schools across the state. Last year, the Harm Reduction Action Center received 7,284 doses from the fund, which Raville estimates helped save more than 4,500 lives.

Unless additional money is found, the bulk fund runs the risk of having to further limit distribution, leaving the hundreds of organizations that rely on it with little or no access to free naloxone. While the medication became available over the counter nationally last fall, the $45 price tag per two-dose package means it can remain out of reach for some who need it most.

In May, the state announced a plan for prioritizing which groups get the medication from the bulk fund with four categories, from “essential” to “low need,” based on how frequently an entity directly encounters people who are most at risk of experiencing or witnessing an overdose. The Harm Reduction Action Center has been classified in the “essential” category. School districts, as well as colleges and universities, are in the next-highest category.

Another organization, The Naloxone Project, said it was misclassified by not being put at the highest priority level. As a result, it said, it received just 1,200 naloxone doses from the fund this year, instead of the 6,000 it requested.

“We would argue that we would fall under ‘essential’ because many of our programs are public-facing and consistently provide naloxone for people who use drugs and who are at the highest risk of experiencing overdose,” said Rachael Duncan, associate director of The Naloxone Project.

The group, which has chapters in 12 states, provides nasal and injectable forms of naloxone to more than 90% of Colorado’s hospitals, to give to patients before they are discharged from the emergency department or from labor and delivery units. More than half of the 12,000 naloxone kits the project has distributed to Colorado medical entities have come from the bulk fund.

Another organization, UCHealth’s Center for Dependency, Addiction and Rehabilitation, known as CeDAR, which offers residential, outpatient, and telehealth treatment, is no longer eligible to receive free naloxone, because its patients typically are insured or can pay out-of-pocket.

Karli Yarnell, a CeDAR physician assistant, said that even when someone can pay for it, that doesn’t mean they can get to a pharmacy to pick up the medicine.

And Duncan is concerned about what the loss of doses will mean for organizations like The Naloxone Project and CeDAR.

“What I fear will happen is a scarcity mindset of organizations competing for funding,” Duncan said. “But I also worry about places that are used to getting it so reliably running out.”

Each year, the Indian Health Service rejects tens of thousands of requests to fund outside care that it doesn’t provide, forcing patients to go without treatment or pay big medical bills themselves.

The IHS is supposed to provide free care to Native Americans, but it does so only at scattered clinics and hospitals the agency funds and then manages or turns over to tribes to operate. Many of those are in rural areas and offer limited services. They might not provide cancer treatment or pregnancy care, for example.

That’s where the agency’s Purchased/Referred Care program is supposed to come in.

But funding shortages, complex rules and administrative fumbles impede access to the program, my colleague Katheryn Houghton and I reported after speaking with patients, elected officials and people who work with the federal agency.

Native Americans qualify for the referred-care program if they live on tribal land — only 13 percent do — or within their tribe’s “delivery area,” which usually includes surrounding counties. Those who live in another delivery area are eligible in some cases.

Jonni Kroll, a member of the Little Shell Tribe of Chippewa Indians of Montana, doesn’t qualify, because she lives in Washington state, nearly 400 miles from her tribe’s headquarters.

Tying program eligibility to tribal lands, Kroll said, echoes old government policies meant to keep Indigenous people in one place, even if it means reduced access to jobs, education and health care.

“What do we do? Sell our homes, leave our families and our jobs?” she said.

What about eligible Native Americans? They aren’t guaranteed funding or timely help. Some of the IHS’s 170 units exhaust their annual pool of referred-care funding or reserve it for the most serious medical concerns.

In fiscal 2022, for example, the program denied or deferred nearly $552 million in spending for about 120,000 requests from eligible patients.

Connie Brushbreaker, a member of the Rosebud Sioux Tribe in South Dakota, has been denied or wait-listed for funding at least 14 times since 2018. In March, she received a letter saying her referred-care program is reserved for patients at imminent risk of dying. It doesn’t make sense to her that the agency refuses to pay for treatment that will be approved once a health problem becomes more serious and expensive.

Another obstacle is the estimated 34 percent of program staffing positions that are vacant.

Multiple patients told us that staff rarely pick up the phone or return messages, or that they share confusing information about eligibility and the application process.

Brendan White, an agency spokesperson, said improving the referred-care program is a top IHS goal. He said about 83 percent of the health units it manages have approved all eligible funding requests this year.

The agency is tackling staff shortages and recently improved how funding is prioritized, he said. The IHS is also studying whether it can afford to create statewide eligibility in the Dakotas.

But many advocates say the only way to improve the referred-care program is to fully fund it — or even better, fully fund the IHS so patients don’t need as much outside care in the first place.

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As part of a media blitz aimed at women voters, Vice President Kamala Harris this week rolled out a plan for Medicare to provide in-home long-term care services. It’s popular, particularly for families struggling to care for both young children and older relatives, but its enormous expense has prevented similar plans from being implemented for decades.

Meanwhile, President Joe Biden called out former President Donald Trump by name for having “led the onslaught of lies” about the federal efforts to help people affected by hurricanes Helene and Milton. Even some Republican officials say the misinformation about hurricane relief efforts is threatening public health.

This week’s panelists are Julie Rovner of KFF Health News, Shefali Luthra of The 19th, Jessie Hellmann of CQ Roll Call, and Joanne Kenen of the Johns Hopkins schools of public health and nursing and Politico.

Among the takeaways from this week’s episode:

• Vice President Kamala Harris’ plan to expand Medicare to cover more long-term care is popular but not new, and in the past has proved prohibitively expensive.
• Former President Donald Trump has abandoned support for a drug price policy he pursued during his first term. The idea, which would lower drug prices in the U.S. to their levels in other industrialized countries, is vehemently opposed by the drug industry, raising the question of whether Trump is softening his hard line on the issue.
• Abortion continues to be the biggest health policy issue of 2024, as Republican candidates — in what seems to be a replay of 2022 — try to distance themselves from their support of abortion bans and other limits. Voters continue to favor reproductive rights, which creates a brand problem for the GOP. Trump’s going back and forth on his abortion positions is an exception to the tack other candidates have taken.
• The Supreme Court returned from its summer break and immediately declined to hear two abortion-related cases. One case pits Texas’ near-total abortion ban against a federal law that requires emergency abortions to be performed in certain cases. The other challenges a ruling earlier this year from the Alabama Supreme Court finding that embryos frozen for in vitro fertilization have the same legal rights as born humans.
• The 2024 KFF annual employer health benefits survey, released this week, showed a roughly 7% increase in premiums, with average family premiums now topping $25,000 per year. And that’s with most employers not covering two popular but expensive medical interventions: GLP-1 drugs for weight loss and IVF.

Also this week, excerpts from a KFF lunch with “Shark Tank” panelist and generic drug discounter Mark Cuban, who has been consulting with the Harris campaign about health care issues.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week they think you should read, too:

Julie Rovner: KFF Health News’ “A Boy’s Bicycling Death Haunts a Black Neighborhood. 35 Years Later, There’s Still No Sidewalk,” by Renuka Rayasam and Fred Clasen-Kelly.

Shefali Luthra: The 19th’s “Arizona’s Ballot Measure Could Shift the Narrative on Latinas and Abortion,” by Mel Leonor Barclay.

Jessie Hellmann: The Assembly’s “Helene Left Some NC Elder-Care Homes Without Power,” by Carli Brosseau.

Joanne Kenen: The New York Times’ “Her Face Was Unrecognizable After an Explosion. A Placenta Restored It,” by Kate Morgan.

Also mentioned on this week’s podcast:

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

At age 66, South Carolina physician Paul Rousseau decided to retire after tending for decades to the suffering of people who were seriously ill or dying. It was a difficult and emotionally fraught transition.

“I didn’t know what I was going to do, where I was going to go,” he told me, describing a period of crisis that began in 2017.

Seeking a change of venue, Rousseau moved to the mountains of North Carolina, the start of an extended period of wandering. Soon, a sense of emptiness enveloped him. He had no friends or hobbies — his work as a doctor had been all-consuming. Former colleagues didn’t get in touch, nor did he reach out.

His wife had passed away after a painful illness a decade earlier. Rousseau was estranged from one adult daughter and in only occasional contact with another. His isolation mounted as his three dogs, his most reliable companions, died.

Rousseau was completely alone — without friends, family, or a professional identity — and overcome by a sense of loss.

“I was a somewhat distinguished physician with a 60-page resume,” Rousseau, now 73, wrote in the Journal of the American Geriatrics Society in May. “Now, I’m ‘no one,’ a retired, forgotten old man who dithers away the days.”

In some ways, older men living alone are disadvantaged compared with older women in similar circumstances. Research shows that men tend to have fewer friends than women and be less inclined to make new friends. Often, they’re reluctant to ask for help.

“Men have a harder time being connected and reaching out,” said Robert Waldinger, a psychiatrist who directs the Harvard Study of Adult Development, which has traced the arc of hundreds of men’s lives over a span of more than eight decades. The men in the study who fared the worst, Waldinger said, “didn’t have friendships and things they were interested in — and couldn’t find them.” He recommends that men invest in their “social fitness” in addition to their physical fitness to ensure they have satisfying social interactions.

Slightly more than 1 in every 5 men ages 65 to 74 live alone, according to 2022 Census Bureau data. That rises to nearly 1 in 4 for those 75 or older. Nearly 40% of these men are divorced, 31% are widowed, and 21% never married.

That’s a significant change from 2000, when only 1 in 6 older men lived by themselves. Longer life spans for men and rising divorce rates are contributing to the trend. It’s difficult to find information about this group — which is dwarfed by the number of women who live alone — because it hasn’t been studied in depth. But psychologists and psychiatrists say these older men can be quite vulnerable.

When men are widowed, their health and well-being tend to decline more than women’s.

“Older men have a tendency to ruminate, to get into our heads with worries and fears and to feel more lonely and isolated,” said Jed Diamond, 80, a therapist and the author of “Surviving Male Menopause” and “The Irritable Male Syndrome.”

Add in the decline of civic institutions where men used to congregate — think of the Elks or the Shriners — and older men’s reduced ability to participate in athletic activities, and the result is a lack of stimulation and the loss of a sense of belonging.

Depression can ensue, fueling excessive alcohol use, accidents, or, in the most extreme cases, suicide. Of all age groups in the United States, men over age 75 have the highest suicide rate, by far.

For this column, I spoke at length to several older men who live alone. All but two (who’d been divorced) were widowed. Their experiences don’t represent all men who live alone. But still, they’re revealing.

The first person I called was Art Koff, 88, of Chicago, a longtime marketing executive I’d known for several years. When I reached out in January, I learned that Koff’s wife, Norma, had died the year before, leaving him hobbled by grief. Uninterested in eating and beset by unremitting loneliness, Koff lost 45 pounds.

“I’ve had a long and wonderful life, and I have lots of family and lots of friends who are terrific,” Koff told me. But now, he said, “nothing is of interest to me any longer.”

“I’m not happy living this life,” he said.

Nine days later, I learned that Koff had died. His nephew, Alexander Koff, said he had passed out and was gone within a day. The death certificate cited “end stage protein calorie malnutrition” as the cause.

The transition from being coupled to being single can be profoundly disorienting for older men. Lodovico Balducci, 80, was married to his wife, Claudia, for 52 years before she died in October 2023. Balducci, a renowned physician known as the “patriarch of geriatric oncology,” wrote about his emotional reaction in the Journal of the American Geriatrics Society, likening Claudia’s death to an “amputation.”

“I find myself talking to her all the time, most of the time in my head,” Balducci told me in a phone conversation. When I asked him whom he confides in, he admitted, “Maybe I don’t have any close friends.”

Disoriented and disorganized since Claudia died, he said his “anxiety has exploded.”

We spoke in late February. Two weeks later, Balducci moved from Tampa to New Orleans, to be near his son and daughter-in-law and their two teenagers.

“I am planning to help as much as possible with my grandchildren,” he said. “Life has to go on.”

Verne Ostrander, a carpenter in the small town of Willits, California, about 140 miles north of San Francisco, was reflective when I spoke with him, also in late February. His second wife, Cindy Morninglight, died four years ago after a long battle with cancer.

“Here I am, almost 80 years old — alone,” Ostrander said. “Who would have guessed?”

When Ostrander isn’t painting watercolors, composing music, or playing guitar, “I fall into this lonely state, and I cry quite a bit,” he told me. “I don’t ignore those feelings. I let myself feel them. It’s like therapy.”

Ostrander has lived in Willits for nearly 50 years and belongs to a men’s group and a couples’ group that’s been meeting for 20 years. He’s in remarkably good health and in close touch with his three adult children, who live within easy driving distance.

“The hard part of living alone is missing Cindy,” he told me. “The good part is the freedom to do whatever I want. My goal is to live another 20 to 30 years and become a better artist and get to know my kids when they get older.”

The Rev. Johnny Walker, 76, lives in a low-income apartment building in a financially challenged neighborhood on Chicago’s West Side. Twice divorced, he’s been on his own for five years. He, too, has close family connections. At least one of his several children and grandchildren checks in on him every day.

Walker says he had a life-changing religious conversion in 1993. Since then, he has depended on his faith and his church for a sense of meaning and community.

“It’s not hard being alone,” Walker said when I asked whether he was lonely. “I accept Christ in my life, and he said that he would never leave us or forsake us. When I wake up in the morning, that’s a new blessing. I just thank God that he has brought me this far.”

Waldinger recommended that men “make an effort every day to be in touch with people. Find what you love — golf, gardening, birdwatching, pickleball, working on a political campaign — and pursue it,” he said. “Put yourself in a situation where you’re going to see the same people over and over again. Because that’s the most natural way conversations get struck up and friendships start to develop.”

Rousseau, the retired South Carolina doctor, said he doesn’t think about the future much. After feeling lost for several years, he moved across the country to Jackson, Wyoming, in the summer of 2023. He embraced solitude, choosing a remarkably isolated spot to live — a 150-square-foot cabin with no running water and no bathroom, surrounded by 25,000 undeveloped acres of public and privately owned land.

“Yes, I’m still lonely, but the nature and the beauty here totally changed me and focused me on what’s really important,” he told me, describing a feeling of redemption in his solitude.

Rousseau realizes that the death of his parents and a very close friend in his childhood left him with a sense of loss that he kept at bay for most of his life. Now, he said, rather than denying his vulnerability, he’s trying to live with it. “There’s only so long you can put off dealing with all the things you’re trying to escape from.”

It’s not the life he envisioned, but it’s one that fits him, Rousseau said. He stays busy with volunteer activities — cleaning tanks and running tours at Jackson’s fish hatchery, serving as a part-time park ranger, and maintaining trails in nearby national forests. Those activities put him in touch with other people, mostly strangers, only intermittently.

What will happen to him when this way of living is no longer possible?

“I wish I had an answer, but I don’t,” Rousseau said. “I don’t see my daughters taking care of me. As far as someone else, I don’t think there’s anyone else who’s going to help me.”

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit kffhealthnews.org/columnists to submit your requests or tips.

Montana is looking to fast-track Medicaid access for older adults who need help to stay in their homes or towns.

Medicaid, the joint federal-state health care program for low-income Americans, opens the door to services such as paying for help to prepare meals or shower safely. But applying for and obtaining that coverage can take weeks or months, leaving aging people in a dangerous limbo: too vulnerable to live at home without assistance, but too healthy to merit a hospital or nursing home bed.

Montana lawmakers drafted a bill for the legislative session that begins in January that would create a shortcut to that care. The Children, Families, Health, and Human Services Interim Committee’s proposal would allow older people and those with a physical disability who are likely eligible for Medicaid to start receiving in-home and community-based care while awaiting final approval.

The goal of presumptive eligibility is to avoid delays in providing stabilizing care outside of medical facilities. Supporters of the plan say local care is also a lot less expensive than hospital or nursing home care.

Montana would join at least 11 states that have presumptive eligibility for seniors and people with disabilities to access in-home care, according to AARP. Washington state began expediting Medicaid coverage in 2023 for people recently discharged from a hospital and plans to expand coverage further. Rhode Island authorizes such benefits to new long-term care applicants. And a law signed last winter in New Jersey means seniors there will have similar access.

People who are hospitalized or checked into a nursing home can struggle to find the middle-ground option for care they need.

Katy Mack, a spokesperson for the Montana Hospital Association, said bottlenecks in the process are difficult for patients, long-term care providers, and hospitals.

“Many elderly patients do ‘get stuck’ in hospitals waiting for transfer to a more appropriate level of care,” Mack said in an email. “This is due to a variety of issues, including staffing, bed availability, and appropriate payments from the patient’s source of health coverage.”

Tyler Amundson, executive director of Big Sky Senior Services, a nonprofit that helps seniors stay in their home, said in one case, a couple without the support they needed ended up in the hospital dozens of times over two months.

“There are a lot of seniors in our community struggling,” Amundson said. “They’ll go home from a hospital with just enough care to get by for a little while.”

The nation’s pool of older Americans is getting bigger. With age comes more medical complications. People 65 or older have the highest rate of preventable hospitalizations, and medical emergencies risk worse health outcomes.

Rising health care costs are fueling anxiety among tens of millions of seniors, with 1 in 10 living below the federal poverty level. Older adults are struggling to pay the combined cost of housing and medical care, and some become homeless.

For years, states have had the option through the Affordable Care Act to allow qualified hospitals to extend presumptive eligibility to some adults based on their income, on top of the opportunity that most states give pregnant women and children. But in states such as Montana, people 65 and older haven’t been included. States need a federal waiver to expand who qualifies for that early access.

Alice Burns, who researches Medicaid issues at KFF, a health information nonprofit that includes KFF Health News, said widening presumptive eligibility for in-home and community-based care gained momentum during the covid-19 pandemic.

“It’s easy to understand why,” Burns said. “When we had the fatality rates in nursing facilities that we did, it was like, OK, we cannot send these people to the nursing facilities unnecessarily.”

The Montana proposal would, after state training, allow tribal entities, area agencies on aging, and hospitals, among others, to screen patients for presumptive eligibility. Approved patients would begin receiving services while state health officials review their applications.

The draft bill spells out some covered services, such as meal delivery and in-home medical equipment. Lawmakers noted it’s not clear if the proposal would help people move into long-term care, such as assisted living facilities, which offer daily support rather than medical treatment.

Montana officials don’t have an estimate for how much the temporary coverage would cost. Jon Ebelt, a spokesperson for the Montana Department of Public Health and Human Services, declined to comment on the proposal.

Mike White is a co-owner of Caslen Living Centers, which has six small assisted living facilities across central and southwestern Montana. His company no longer accepts Medicaid applicants until their coverage is final, and White said it’s not alone. He said that process can take anywhere from three to six months due to cumbersome paperwork, which he said is too long for small businesses to go without pay.

State officials have said delays in Medicaid approval often stem from ongoing communication with applicants.

The state’s Medicaid program has gone through major upheaval in the past year as states nationwide reviewed eligibility for everyone on the program. Montana officials dropped more than 115,300 people from coverage in that process, according to the state’s final report. Those disenrollments continued as nonprofits and patients alike cited problems in the state’s process, including delays in application processing and access to help for other safety net services.

Now, state lawmakers predict a major political fight during the legislative session over whether to continue to allow expanded Medicaid access to people who earn up to 138% of the federal poverty level, or about $43,000 a year for a family of four.

State Rep. Mike Yakawich, the Billings Republican behind the presumptive eligibility proposal, said he wants to keep some of its language vague. He’s leaving room for negotiations and potential amendments during the legislative session and beyond.

“The focus is to keep people at home, and it’s still going to be a hard lift to get it past the session,” Yakawich said. “We can add more to it two years from now.”

Not everyone on the interim committee was on board.

Sen. Daniel Emrich, a Republican from Great Falls, voted against the policy, saying it sounded too much like a gamble for families.

“We run the risk of taking and providing a service that’s then going to be pulled out from under them,” Emrich said.

The counterargument is that such cases would be rare. Burns, with KFF, said there is no reliable data nationally to show how often people are denied Medicaid after being presumed eligible. Presumptive access to Medicaid in-home programs is relatively new. And, from hospital data for other patients, it’s difficult to know whether a person was denied Medicaid because they didn’t qualify or because they didn’t complete the paperwork after leaving the hospital.

“There’s all these places where the ball could get dropped,” Burns said.

She said the difference with measures like Montana’s is that support services follow patients in their daily life, making it less likely patients would fall off the radar.