Peterson, who has quadriplegia, is an enthusiastic participant in an unusual test of autonomous vehicles in this corner of northern Minnesota. She helped attract government funding to bring five self-driving vans to Grand Rapids, a city of 11,000 people in a region of pine and birch forests along the Mississippi River.

The project’s self-driving vans always have a human operator in the driver’s seat, poised to take over in complicated situations. But the computers are in control about 90% of the time, and they’ve given 5,000 rides since 2022 without any accidents, organizers say.

“It’s been fun. I’m really sold on it,” said Peterson, who used to rely on her power wheelchair to travel around town, even in winter.

Autonomous vehicles, which can drive themselves at least part of the time, are making news in urban areas, such as San Francisco, where extensive tests of the technology are underway.

Rural experiments have been set up in a few other states, including Iowa and Ohio. Peterson hopes the pilot projects help bring a day when fully autonomous cars and vans assist the estimated 25 million Americans whose travel is limited by disabilities.

Fully independent vehicles remain far from everyday options, as tech companies and automakers struggle to perfect the technology. Recently, for example, General Motors recalled all its self-driving cars after one struck and dragged a pedestrian who had been hit by another vehicle.

But Waymo, a corporate relative of Google, is forging ahead with fully autonomous taxi rides in multiple cities.

Peterson is among those who believe autonomous vehicles someday will become safer than human-driven models.

“Look at how many times the lightbulb failed before it worked,” she said.

Unlike many smaller towns, Grand Rapids has public buses and a taxi service. But Peterson said those options don’t always work well, especially for people with disabilities. The autonomous vehicle program, known as goMARTI, which stands for Minnesota’s Autonomous Rural Transit Initiative, offers a flexible alternative, she said. She hopes it eventually will ease a national shortage of drivers, which tends to be especially acute in rural regions.

The project is funded through the spring of 2027 with more than $13 million from federal, state, and local sources, much of it coming from the 2021 federal infrastructure bill.

The project’s distinctive Toyota minivans are outfitted by a Michigan company, May Mobility, which is backed by the Japanese auto giant and other investors. Slogans painted on the side invite the public to “Experience Self Driving in Minnesota’s Nature.” The vans bristle with technology, including cameras, radar, GPS, and laser sensors. Their computer systems constantly monitor surroundings and learn from situations they encounter, said Jon Dege, who helps manage the project for May Mobility.

Users arrange free rides via a smartphone app or the 211 social service telephone line.

On a recent chilly afternoon, a goMARTI van pulled up near Peterson’s house. She soon emerged, bundled in a bright purple parka honoring her beloved Minnesota Vikings football team. She rolled her electric wheelchair to the van, up a ramp, and into the back. Van operator Mark Haase helped strap the wheelchair in, then climbed into the driver’s seat for a demonstration.

As the van pulled onto the street, the steering wheel seemed to shudder, reflecting tiny adjustments the computer made. Haase kept his foot poised near the brake pedal and his hands cupped around the steering wheel, ready to take over if a complication came up. After moments when he needed to take control of the vehicle, he pressed a button telling the computer system to resume command. “It was weird at first, but it didn’t take long to get used to it and trust the system,” Haase said.

The Minnesota Department of Transportation helped direct federal money toward the Grand Rapids project, which followed a similar effort in the southern Minnesota city of Rochester. Tara Olds, the department’s director of connected and automated vehicles, said her agency sought smaller communities that wanted to give autonomous vehicles a shot.

Neither kind of driver will ever be perfect, Olds said. “You know, humans make mistakes, and computers make mistakes,” she said. But the public would understandably react differently if a fatal crash were caused by an autonomous vehicle instead of a human, she said.

Frank Douma, a research scholar at the University of Minnesota’s Center for Transportation Studies, has analyzed the Grand Rapids project and other autonomous vehicle programs. He said running such projects in smaller towns isn’t necessarily harder than doing so in urban areas. “It’s just different.”

For the foreseeable future, such services probably will need to run on predetermined routes, with regular stops, he said. It would be more complicated to have autonomous vehicles travel on demand to unfamiliar addresses out in the countryside.

Developers will need to overcome significant challenges before autonomous vehicles can become a regular part of rural life, he said. “But it’s no longer something that can be dismissed as impossible.”

A 2022 report from the National Disability Institute predicted that autonomous vehicles could help many people with disabilities get out of their homes and obtain jobs.

Tom Foley, the group’s executive director, said a lack of transportation often causes isolation, which can lead to mental health problems. “There’s an epidemic of loneliness, particularly for older people and particularly for people with disabilities,” he said.

Foley, who is blind, has tried fully autonomous vehicles in San Francisco. He believes someday they will become a safe and practical alternative to human drivers, including in rural areas. “They don’t text. They don’t drink. They don’t get distracted,” he said.

For now, most riders who use wheelchairs need attendants to secure them inside a van before it starts moving. But researchers are looking into ways to automate that task so people who use wheelchairs can take advantage of fully autonomous vehicles.

The Grand Rapids project covers 35 miles of road, with 71 stops. The routes initially avoided parking lots, where human drivers often make unexpected decisions, Dege said. But organizers recognized the street-side stops could be challenging for many people, especially if they’re among the 10% of goMARTI riders who use wheelchairs. The autonomous vans now drive into some parking lots to pick riders up at the door.

During the recent demonstration ride with Peterson and Haase, the van turned into a clinic parking lot. A lady in an orange car cut across the lot, heading for the front of the van. The computer driving the van hit the brakes. A split second later, Haase did the same. The orange car’s driver smiled and gave a friendly Midwestern wave as she drove past.

The autonomous vans have gone out in nearly all kinds of weather, which can be a challenge in northern Minnesota. Grand Rapids received more than 7 feet of snow last winter.

“There were only three or four times when it was so snowy we had to pull it in,” Dege said. The autonomous driving systems can handle snowflakes in the air and ice on the pavement, he said. They tend to get confused by snow piles, however. The human operators step in to assist in those situations while the computers learn how to master them.

The robot drivers can get stymied as well by roundabouts, also known as traffic circles. The setups are touted as safer than four-way stops, but they can befuddle human drivers too.

Haase took control each time the van approached a roundabout. He also took the wheel as the van came up on a man riding a bicycle along the right side of the road. “Better safe than sorry,” Haase said. Once the van was a few yards past the bicycle, he pressed a button that told the robot to resume control.

Peterson takes the vans to stores, restaurants, community meetings, hockey games — “and church, of course, every Sunday and Wednesday,” she said.

She said the project has brought Grand Rapids residents together to imagine a more inclusive future. “It’s not just a fancy car,” she said.

This article was produced by KFF Health News, formerly known as Kaiser Health News (KHN), a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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Roderick is the environmental health officer for Webster County in north-central Iowa, where a few thousand rural residents live among sprawling corn and soybean fields. Many draw their water from private wells, which are exempt from most federal testing and purity regulations. Roderick spreads the word that they aren’t exempt from danger.

More than 43 million Americans rely on private wells, which are subject to a patchwork of state and local regulations, including standards for new construction. But in most cases, residents are free to use outdated wells without having them tested or inspected. The practice is common despite concern about runoff from farms and industrial sites, plus cancer-causing minerals that can taint groundwater.

“You’re cooking with it. You’re cleaning with it. You’re bathing in it — and, nowadays, there are so many things that can make you sick,” Roderick said.

Federal experts estimate more than a fifth of private wells have concentrations of contaminants above levels considered safe.

Like many states, Iowa offers aid to homeowners who use well water. The state provides about $50,000 a year to each of its 99 counties to cover testing and help finance well repairs or treatment. The money comes from fees paid on agricultural chemical purchases, but about half goes unused every year, according to the Iowa Department of Natural Resources.

Roderick, who started her job in 2022, aims to spend every penny allotted to her county. Last spring, she snared an extra $40,000 that other counties hadn’t used. She promotes the program online and by mailing piles of postcards. Traveling the countryside in a hand-me-down SUV from the sheriff’s department, she collects water samples from outdoor spigots and sends them to a lab.

When she finds contamination, she can offer up to $1,000 of state grant money to help with repairs, or up to $500 to cap an abandoned well.

Experts urge all users of private wells to have them tested at least annually. Even if wells meet modern construction standards and have tested clean in the past, they can become contaminated as the water table rises or falls and conditions change above them. A faulty septic system or overapplication of fertilizer or pesticide can quickly taint groundwater.

Too many residents assume everything is fine “as long as the water is coming out of the tap and it doesn’t smell funny,” said Sydney Evans, a senior science analyst for the Environmental Working Group, a national advocacy organization that studies water pollution.

The main concerns vary, depending on an area’s geology and industries.

In Midwestern farming regions, for example, primary contaminants include bacteria and nitrates, which can be present in agricultural runoff. In rural Nevada and Maine, arsenic and uranium often taint water. And, throughout the country, concerns are rising about the health effects of PFAS chemicals, widely used products also known as “forever chemicals.” A recent federal study estimated at least 45% of U.S. tap water contains them.

Filters can help ensure safety, but only if they’re selected to address the specific problem affecting a home’s water supply, Evans said. The wrong filter can give a false sense of safety.

Evans said people who wonder about possible contaminants in their area can ask to see test results from wells supplying nearby community water systems. Those systems are required to test their water regularly, and the results should be public, she said: “It’s a great place to start, and it’s free and easy.”

She also said people who rely on private water wells should ask local health officials about eligibility for help paying for testing and possible repairs or filters. Subsidies are often available but not publicized, she said.

A study by Emory University researchers published in 2019 found that all states have standards for new well construction, and most states require permits for them. However, the researchers wrote, “even in states with standards for water quality testing, testing is typically infrequent or not conducted at all.”

Some longtime rural residents live in homes that have been in their families for generations. They often know little about their water source. “They’ll say, ‘This is the well my grandfather dug. We’ve used it ever since, and no one’s had an issue,’” said David Cwiertny, director of the University of Iowa’s Center for Health Effects of Environmental Contamination. They might not realize impure water can harm health over time, he said.

Some states require inspection and tests of private wells when properties are sold. Iowa doesn’t mandate such measures, although Webster County does. It’s a good idea for homebuyers anywhere to request them, said Erik Day, who oversees the private well program for the Iowa Department of Natural Resources. He also recommends asking for a technician who can run a flexible scope down the well to visually inspect the inside.

Day estimated fewer than 10% of Iowa’s private well owners have them tested annually, even though testing can be free under the state grant program.

In Webster County, Larry Jones recently took advantage of free well testing at a weathered ranch house he bought west of Fort Dodge, in a subdivision bordering a large soybean field. Jones lives next door to the 54-year-old home, and he is refurbishing it as a place for his relatives to stay.

Roderick, the county health official, sampled water from the well and found it was tainted with bacteria. She offered Jones $1,000 from the state grant to help get it fixed. He added a few thousand dollars of his own and hired a contractor.

“It’s an investment for the future,” he said. “You’re talking about your family.”

The old well was made with a 2-foot-diameter concrete casing sunk vertically in sections about 60 feet into the ground. A smaller plastic pipe ran down the middle of the casing to water at the bottom. A pump pulled water up through the smaller pipe and into the home.

Lynn Rosenquist, who owns a local well-repair business, told Jones the well probably was original to the house and likely met standards when it was built. But at least one chunk of concrete had broken off and fallen in.

Repairs took two days of heavy work by Rosenquist and his brother, Lanny, who are the third generation of their family to maintain wells. The brothers used a backhoe and small crane to remove much of the concrete casing. They replaced it with a narrower, PVC pipe, which they sealed with a cement mixture to prevent seepage from the surface. When finished, they “shocked” the system with a bleach solution, then flushed and tested again.

Such modern construction is less prone to becoming tainted, Roderick said. “If it’s not sealed airtight, bacteria can get in there and it’s just gross,” she said.

Grossness is not the only thing Roderick considers. Besides E. coli and other bacteria, she tests for nitrates and sulfates, which can exist in farm or lawn runoff or come from natural sources, and for arsenic and manganese, which can occur in rock formations. She plans to add tests for PFAS chemicals soon.

She collects the water in small plastic bottles, which she mails to a lab. She enters information about each well into a state database. If the tests turn up contaminants, she advises homeowners of their options.

Roderick said she enjoys the routine. “I’ve met so many people — and I’ve met a lot of dogs,” she said with a laugh. “I love the feeling that I’m really helping people.”

This article was produced by KFF Health News, formerly known as Kaiser Health News (KHN), a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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The Centers for Disease Control and Prevention approved the latest vaccine on Sept. 12, and the new shots became available to the general public within the past week or so. But many nursing homes will not begin inoculations until well into October or even November, though infections among this vulnerable population are rising steeply, to nearly 1%, or 9.7 per 1,000 residents, as of mid-September from a low of 2.2per 1,000 residents in mid-June.

“The distribution of the new covid-19 vaccine is not going well,” said Chad Worz, CEO of the American Society of Consultant Pharmacists. “Older adults in those settings are certainly the most vulnerable and should have been prioritized.”

With the end of the formal public health emergency in May, the federal government stopped purchasing and distributing covid vaccines. That has added complications for operators of nursing homes who have encountered resistance throughout the pandemic in persuading employees and residents to get the shots.

The coronavirus decimated nursing homes during the first two years of the pandemic, killing more than 200,000 residents and staffers. Elizabeth Sobczyk, project director of Moving Needles, a CDC-funded initiative to improve adult immunization rates in long-term care facilities, said without a government agreement to purchase the shots, vaccine manufacturers will make large quantities only once CDC experts have recommended approval.

“Then they need to be FDA inspected — we want safe vaccines — then there is contracting and rollout,” Sobczyk said. “So I completely understand the frustration, but also why the availability wasn’t immediate.”

Even once the shots are available, nursing homes face continuing resistance to the vaccine among nurses and aides. Without state mandates for workers to be vaccinated, most nursing homes are relying on persuasion, and that is often proving difficult.

“People want covid-19 to be in the rearview mirror,” said Leslie Eber, medical director of Orchard Park Health Care Center in Centennial, Colorado. “We’re going to have to remind people more this year that covid-19 is not benign. Maybe it’s a cold for some people, but it’s not going to be a cold for the folks I care for.”

Sixty-two percent of nursing home residents are up to date on their vaccines, meaning they received the second booster available before this month’s new shot. That’s an improvement over the 38% rate at the start of October 2022, according to the most recent federal data as of mid-September.

But only 25% of nursing home employees are up to date, which is close to last October’s rate.

In a written statement, the Department of Health and Human Services said that it will be identifying long-term care facilities with low vaccination rates and reaching out to ensure “proven infection prevention and control measures are being implemented to protect seniors.”This year, more nurses and aides will have to obtain shots at drugstores or health centers, on their personal time rather than at work. Many homes run clinics, with their long-term care pharmacies supplying the vaccine as they did before, but face extra bureaucratic hassles in billing insurers for the vaccine for both residents and employees.

On top of that, homes are rolling out a new vaccine for a dangerous respiratory virus, RSV, which will be a third shot for many residents along with vaccines for covid and the flu.

The trio of vaccines will create more administrative complexity for nursing homes since this year they must bill Medicare to be reimbursed for the shots. The covid vaccine should be charged to Medicare Part B, which covers outpatient and physicians’ services, but the RSV vaccine must be billed to Medicare Part D, the prescription drug benefit.

“The United States has been phenomenal in screwing up vaccinations,” said David Nace, chief medical officer of UPMC Senior Communities in Pittsburgh. “This idea that some are under Part B and some are under Part D and some can be billed by a pharmacy — who in God’s name came up with this?”

While Medicare will pay for vaccines for most nursing home residents, employees may face private insurance red tape and, for a small group, potential out-of-pocket costs.

Leslie Frane, an executive vice president of the Service Employees International Union, which represents more than 134,000 workers in 1,465 nursing homes, said that many homes had stopped running clinics in their facilities and told workers to go to the drugstore to get vaccinated. She said this would lead to more workers skipping their shots.

“There’s very little time, given how many nursing home workers work multiple jobs,” she said.

The CDC has arranged for 25 million to 30 million people lacking health insurance or whose insurance doesn’t cover the complete cost of the vaccine to get free covid shots at select pharmacies, health centers, and medical offices listed at vaccines.gov. Frane said that program is not well known among workers, and Worz said distribution is favoring the large pharmacy chains, slowing access in rural communities. Of the nation’s 19,400 independent pharmacies, federal officials said 627, many in rural areas, are enrolled in the program and 100 are being added.

A big obstacle, though, continues to be resistance to the vaccination among nurses and aides. Like many facility owners, Avalon Health Care Group, which owns or operates more than a dozen nursing homes in Western states, is not mandating staff be vaccinated. Sabine von Preyss-Friedman, Avalon’s chief medical officer, said she tries to address the reasons with each worker and won’t abandon the push.

“We’re not going to just say, ‘OK, everyone get vaccinated’ and then forget about it,” she said.

Avalon’s homes have used modest financial incentives, such as organizing contests between different units, with the winner getting prizes like a pizza party or a drawing for a gift certificate from a department store, and those efforts will resume this year.

Jim Wright, medical director of Our Lady of Hope Health Center and two other nursing homes in Richmond, Virginia, said that rewards and respectful persuasion were not enough to sway his homes’ employees. They tend to be in their 20s and 30s and are not worried about catching covid, which many of them have already weathered.

“They most likely will not do it to protect the residents or protect themselves,” he said. “I don’t know what the answer is.”

Sheena Bumpas, a certified nursing assistant in Duncan, Oklahoma, and vice chair of the National Association of Health Care Assistants, plans on getting this season’s shot but said some of her colleagues won’t.

“Now that the public health emergency has ended, I think people are done with it,” she said.

Edenwald Senior Living, a nursing home within a retirement community in Towson, Maryland, is requiring its workers to be vaccinated unless they can justify an exemption for medical or religious reasons.

As of Sept. 10, about three-fourths of the home’s workers were up to date with their previous covid vaccines, which is triple the national rate for nursing home employees, according to federal records.

Edenwald is relying on the Giant supermarket pharmacy to administer the shots in the auditorium of its independent living section. Sign-up sheets have already been distributed for clinics later this month. The home is billing workers’ insurance for the shots, but facility managers said it will pay for employers without health coverage.

“This is our seventh clinic for covid,” said Meghan Curtis, Edenwald’s director of care management. “We’ve kind of got it down pat.”

Swati Gaur, medical director of three nursing homes affiliated with Northeast Georgia Health System, said leaders may offer recalcitrant employees the option to take the Novavax vaccine. It relies on more traditional virus-blocking technology than the Moderna or Pfizer shots that use messenger RNA.

“We are basically saying, ‘Why are you not taking the vaccine? Have you thought about Novavax? It’s manufactured like the flu vaccine,’” Gaur said.

For the first time, nursing home residents will be offered a vaccine for respiratory syncytial virus, or RSV. The virus causes the hospitalizations of as many as 160,000 people 65 and older each year, killing up to 10,000. Most nursing homes are coupling the flu vaccine with either the covid vaccine or the RSV vaccine, but not attempting to give all three simultaneously.

Gaur said because of the novelty of the vaccine and the relative unfamiliarity with RSV, clinicians will need to spend more time explaining the reason for the shots.

In Dallas Center, Iowa, Spurgeon Manor, an independent nonprofit home, is partnering with the pharmacy from a nearby Hy-Vee grocery store to provide the covid shot, most likely in early October, to 85 residents of the nursing home and an adjoining assisted living center as well as employees.

Alana Marean, Spurgeon’s assistant director of nursing, said workers will be encouraged to receive the shots, but she guessed that not even half would do so. “There’s a lot of stigma out there about it,” she said.

Resident Lee Giese, 95, a retired truck driver, said he’s looking forward to the latest shot after coming down with covid last winter. He suspects his earlier vaccinations helped protect him from more serious symptoms.

He expects most residents of his facility will get the shots, but a few will refuse. “Some people have a death wish,” he said.

This article was produced by KFF Health News, formerly known as Kaiser Health News (KHN), a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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The national debate over that question will heat up now that federal regulators have proposed to improve care by setting minimum staffing levels for all U.S. nursing homes.

Rural nursing homes would have five years to comply with some of the rules, versus three for their urban counterparts. Facilities also could apply for “hardship exemptions.” But industry leaders predict the rules could accelerate a wave of closures that has already claimed hundreds of rural nursing homes.

Some families that rely on the Good Samaritan Society home in Syracuse fear the regulation could hasten its demise.

The facility is the town’s lone nursing home. It is running at barely half its licensed capacity, and managers say they’ve been turning away prospective residents because they can’t find enough staff to care for more.

Lana Obermeyer, whose mother lives there, said employees take good care of residents. “Are they overworked? Probably,” she said. “Isn’t everybody these days?”

The Biden administration proposal, released Sept. 1, is intended to ensure higher-quality care by requiring a minimum number of hours of average daily staffing per resident, including 2.5 hours from certified nurse aides and 33 minutes from registered nurses.

The proposal also would require around-the-clock coverage by at least one registered nurse at every nursing home. Regulators estimate 1,358 rural nursing homes, including 58 in Nebraska, would need to add nurses to meet that standard.

Patient-safety advocates have long pressed the government to impose such standards to prevent neglect of nursing home residents. They blame the industry for letting its staffing problems fester for decades, and many hoped the federal proposal would be more stringent.

The proposal would not affect assisted living centers, which are designed to care for people with less severe health problems.

Syracuse, which has about 1,900 people, serves a farming region in southern Nebraska. Its red-brick nursing home sits near a cemetery, a hearing aid store, and a tractor dealership. It would need to hire several more aides and an overnight registered nurse to meet the requirements.

Most of the nursing home’s 46 residents are from the area. So are most employees. Staffers often care for their former teachers, coaches, and babysitters. They know each other’s families.

If the facility closed, many residents likely would be transferred to larger nursing homes in the city of Lincoln, a 40-minute drive northwest, or Omaha, which is an hour northeast. They would be placed among strangers.

“I truly think it would kill half of these people,” said Obermeyer, whose mother, Sharon Hudson, has been in the Good Samaritan home five years.

Obermeyer lives less than a block away, and she walks over to see her mom several times a week. Hudson also enjoys frequent visits from other locals, who stop by to see her after visiting their own parents in the facility.

Hudson has advanced Alzheimer’s disease. She can no longer speak many words, but she smiles and giggles often, and tries to communicate with garbled sentences. “She’s a very happy, happy person,” Obermeyer said.

Ideally, she would be served in a specialized “memory care unit,” for people with dementia. The Good Samaritan home once had one, but the unit closed several years ago for lack of staff. The wing now sits dark.

Ten Nebraska nursing homes have shut down since 2021, said Jalene Carpenter, president of the Nebraska Health Care Association. Most have been in small towns.

The state’s long-term care facilities have raised wages as much as 30% in recent years, partly because Nebraska joined most other states in substantially increasing how much its Medicaid program pays for nursing home care, Carpenter said. But many of the state’s 196 remaining nursing homes are limiting admissions because of staffing shortages, she said. “It’s unsustainable.”

Carpenter said part of the problem is that the population of seniors who need care in many rural areas outpaces the supply of working-age adults. Job seekers have plenty of choices outside of health care, many with better hours and less stress. She noted that nine rural Nebraska counties had no registered nurses in 2021.

A prominent consumer advocate scoffed at claims that rural facilities would be unable to comply with the proposed staffing rules.

“That’s always their first response: ‘We’re going to have to close,’” said Lori Smetanka, executive director of the National Consumer Voice for Quality Long-Term Care. “It’s like, ‘The sky is falling.’”

Smetanka said the industry should have improved working conditions and wages long ago, and she contends the proposed standards are too lenient.

Regulators shouldn’t offer rural nursing homes extra time to meet the staffing rule, she said. “Residents in rural facilities have the same level of needs as those in urban facilities,” she said. “Every resident deserves quality care today.”

Smetanka’s group favors offering incentives, such as pay raises and housing assistance, to employees in the long-term care industry. It also wants the government to strengthen options for care in people’s homes instead of in facilities.

Industry leaders have suggested easing immigration rules to allow more workers from other countries. Smetanka said that such workers might help ease the staffing shortage but that they shouldn’t be subjected to the poor conditions and low pay that have driven many previous employees away.

In Iowa, 27 nursing homes have closed over the past two years, according to the Iowa Health Care Association. Most were in rural areas. About 400 remain open in the state.

John Hale, an Iowa advocate for improved long-term care, said he sympathizes with rural residents who worry about facilities closing. But he said companies sometimes use staffing woes as an excuse to shutter money-losing facilities.

Hale has roamed the halls of Iowa’s Capitol for years, trying to persuade legislators to protect vulnerable seniors and people with disabilities. He said minimum staffing proposals have always been blocked by the nursing home industry, which receives millions of state and federal tax dollars from Medicaid. The industry’s message to government officials boils down to “give us more money and leave us alone,” he said.

Hale noted Iowa’s government sets minimum staffing levels for child care centers to ensure kids’ safety, but hasn’t done so for seniors in care facilities. “I just wonder what that says about our values as a government and as a people,” he said.

The longtime federal standard for nursing homes has been that they have “sufficient” staff. Hale said that vague standard is akin to replacing speed limit signs with suggestions that motorists drive “at reasonable speeds.”

Nursing homes are required to report their staffing to federal regulators, who use formulas to measure how much daily attention residents receive from various types of professionals, including registered nurses, licensed practical nurses, and certified nursing aides. Some states have set specific minimum staffing levels, but many, including Nebraska and Iowa, have not.

The Good Samaritan home in Syracuse is rated three out of five stars for overall quality on the nursing home comparison website run by Medicare. Its staffing level is rated at four stars, although its reported ratio of staff hours to residents was below national and Nebraska averages.

The Good Samaritan Society, which owns the nursing home, is one of the country’s largest nonprofit chains of care facilities. In 2021, it reported nearly $78 million in losses on nearly $1 billion in revenue. The company is owned by the giant Sanford Health system, based in South Dakota. It has closed 13 nursing homes in the past two years, mostly in rural areas.

Good Samaritan Society President Nate Schema said he fears the proposed federal staffing standards would spark more closures, forcing rural residents to seek care far from their hometowns. Family members would not be able to visit as often, he said. “Are they going to have to drive 20 or 30 or, God forbid, 100 miles?”

In a letter to federal regulators, Schema wrote that his company owns 139 nursing homes in 19 states, with nearly 1,700 open positions. At one facility in rural South Dakota, he wrote, a night-shift nursing job has been vacant for three years.

The possibility of closure is on the minds of residents and families at the Good Samaritan nursing home in Syracuse.

Resident Nellie Swale said she knows people who had to transfer to the facility from other nursing homes that closed. They were stressed and saddened by the move, she said. “Old people really depend on routines,” she said.

Certified nursing assistant Karena Cunningham tells residents she hopes the Syracuse nursing home stays open. But, she said, “we can’t make them any promises.”

Cunningham considered looking for a less stressful job, but she couldn’t leave. “It’s my family here. I love the friends I’ve made,” she said.

The facility currently has 82 employees, with 10 vacant full-time positions. The company said it spent $150,000 in the past year raising pay at the facility. The lowest starting wage for a nurse aide there has reached $18 an hour, a 30% increase from 10 months earlier.

Cunningham said that with a bigger staff, the nursing home could accept more residents, including those with complicated issues, such as addiction, mental illness, or severe obesity.

A national minimum staffing rule sounds like it would make sense, “in a perfect world,” she said.

“Bring me these people that we’re supposed to have for staff,” Cunningham said. “Where are they?”

This article was produced by KFF Health News, formerly known as Kaiser Health News (KHN), a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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Babe lives a quiet life on a hillside farm in southern Iowa, where she grazes on grass with a small herd of fellow goats. Her owner, Stacy Wistock, milks her twice a day.

Wistock takes precautions to keep the milk clean, but she rarely pasteurizes it. Until recently, she gave it away to family and friends. Now, she’ll make a little money off it. Iowa legislators decided this spring to join dozens of other states in allowing small producers to sell unpasteurized milk from cows, goats, and sheep.

Public health authorities and major dairy industry groups oppose the practice, saying such milk can be tainted with dangerous bacteria, including E. coli, salmonella, and listeria. But in state after state, those warnings have been overwhelmed by testimonials from fans of “raw milk,” who contend pasteurized milk is more difficult to digest because the process alters enzymes and kills helpful bacteria.

Federal experts say there is no proof that pasteurization makes milk less healthful. People on all sides of the issue say the rising interest in raw milk is fueled partly by distrust of public health authorities, which grew during the covid-19 pandemic.

Wistock is unsure about some of the health claims made by ardent raw milk fans. But she sees the issue as a matter of freedom. “I don’t like restrictive laws about what foods you can and can’t sell to your neighbors,” she said.

Iowa’s new law, which took effect July 1, allows only direct sales from small producers to consumers. The law is stricter than those in several other states, which allow raw milk sales in stores.

Pasteurization, developed in the 1800s, involves heating milk to kill bacteria. The practice was widespread by 1950, helping rein in deadly diseases, including tuberculosis, typhoid, and scarlet fever, according to the Centers for Disease Control and Prevention.

“Most public health professionals and health care providers consider pasteurization to be one of public health’s most effective food safety interventions ever,” the CDC’s website says. It warns that consumption of unpasteurized milk has sparked outbreaks of food poisoning, which can cause diarrhea, vomiting, kidney failure, and even death.

Iowa: A Case Study in Raw Milk’s Evolving Legal Landscape

Eric Heinen, an environmental health officer for northern Iowa’s Black Hawk County, is among the public health officials who worked for years to keep raw milk sales illegal.

He was discouraged but not shocked to see Iowa’s raw milk proposal pass this spring amid growing skepticism of science. “It’s a different atmosphere we’re in right now,” he said.

Heinen said he has no objection to informed adults risking their health by consuming raw milk. But he wishes it weren’t being given to young children, who are particularly susceptible to complications.

He has heard proponents argue that humans got along fine for thousands of years while drinking unpasteurized milk and going without vaccinations. “Then again, the life span 2,000 years ago was a lot less than it is today,” he said, and many more children used to die as infants or toddlers.

Iowa legislators repeatedly rebuffed proposals to legalize raw milk over the past 17 years. The idea finally cleared the Republican-controlled legislature this spring and was signed into law by Republican Gov. Kim Reynolds.

The leading statehouse sponsor, Republican Sen. Jason Schultz, noted during debate that under the bill, raw milk dairies may have no more than 10 animals giving milk. Producers must test the animals monthly for bacteria. The unpasteurized milk must be sold directly from producers to consumers. It can’t be offered in stores, restaurants, or farmers markets. Containers must include labels noting the milk is unpasteurized and has not been inspected by the government.

“By limiting the size of the farm and the methods of distribution, this bill will meet the niche market demand while requiring strong local connections between consumers and producers,” Schultz said during floor debate.

Schultz expressed delight in formally asking his colleagues to “mooooove” the bill to final passage.

The bill was earlier criticized on the Iowa House floor by Rep. Megan Srinivas, a Democrat and infectious disease physician. Srinivas recounted treating children who were seriously sickened by germs in unpasteurized milk.

“Raw milk increases chances of infection by 150 times,” Srinivas told her colleagues. Infected people can then pass on germs, including hepatitis A, shigella, and E. coli, when handling other people’s food, she said. “These outbreaks have public health implications that we cannot ignore.”

A national group, the Weston A. Price Foundation, advises activists who lobby for raw milk legalization in statehouses across the country.

The foundation’s president, Sally Fallon Morell, said that when her group launched its website in 1999, 27 states allowed any sales of raw milk. Only a few states still totally ban it, she said.

Fallon Morell lives in rural Maryland, where she raises Jersey cows and complies with her state’s regulations by selling raw milk with labels saying it is for pets. “There’s no law against eating pet food,” she said.

She contends the public health establishment supports an “industrial system” of farming, and she disputes official reports of raw milk being tied to outbreaks of food poisoning.

From Curious Consumer to Staunch Critic

A vocal opponent of unpasteurized milk acknowledged in an interview that the other side is winning across the nation. “Public health has lost the war on raw milk,” said Mary McGonigle-Martin, a board member of a national food-safety group called Stop Foodborne Illness.

McGonigle-Martin, who lives in California, testified four times over several years against legalization proposals in the Iowa Legislature. She recounted how her son, Chris, became critically ill after drinking raw milk tainted with E. coli in 2006.

McGonigle-Martin said in a recent interview that she bought the milk at a health food store because she hoped a natural diet would help her son, who had attention-deficit/hyperactivity disorder. But Chris, who was 7, became severely ill less than three weeks after starting to drink it.

He spent two months in the hospital, and doctors had to put him on a ventilator and kidney dialysis while his body fought off toxins produced by the bacteria.

McGonigle-Martin wants states that allow sales of raw milk to require testing and training to reduce the danger. Iowa legislators added some precautions before their bill passed, she said, but they didn’t include strong enforcement provisions.

She favors the Iowa law’s 10-animal limit for raw milk producers, but she worries the provision could encourage untrained hobbyists to get into the business. “Producing raw milk is not like growing vegetables in your backyard and selling them,” she said.

Raw milk distribution isn’t totally new in Iowa. Before the law went into effect, several Iowa producers posted online that they offered it via “herd shares.” Under such arrangements, customers purchase a share of a herd, then receive a portion of its milk from the farmer. Proponents contend it’s legal because people are allowed to drink raw milk from their own animals.

Several states have laws explicitly allowing or banning herd share distribution of raw milk. Iowa has no such law, although a spokesperson for the Iowa Department of Agriculture and Land Stewardship said the agency has considered such arrangements to be unpermitted sales of the product.

States have widely varying laws on raw milk, said Alexia Kulwiec, a Wisconsin lawyer and executive director of the Farm-to-Consumer Legal Defense Fund, which advocates for legalization. Some state laws contain language seeming to allow limited distribution but still make it nearly impossible, she said. Florida, Hawaii, Maryland, New Jersey, Nevada, and Wisconsin have some of the highest hurdles, Kulwiec said.

Before Iowa allowed raw milk sales, some consumers loaded coolers into their cars and traveled to neighboring states to buy it. Supriya Jha, a software engineer from the central Iowa town of Runnells, is among them.

Jha has driven monthly to Missouri to buy unpasteurized cow milk for her toddler. The round trip is nearly 200 miles. She plans to buy goat milk from Wistock’s Iowa farm now that it’s legal.

Jha believes properly produced raw milk is healthful and easier for children to digest than pasteurized milk. She said she looks into how raw-milk producers operate before she buys from them. She plans to try some of Wistock’s goat milk herself to see how her body reacts before she feeds it to her daughter.

Jha grew up in India, where, she said, manufacturers are less aggressive in hawking highly processed foods. “I wanted to raise my baby with the old ways,” she said. She also is skeptical of many vaccines that most doctors and public health leaders urge for children. “I don’t trust the medical establishment,” she said, adding she thinks the system pushes profitable products and treatments. “It’s a racket.”

Back at Wistock’s farm, Babe will soon be joined by a few more nanny goats that are ready to be milked. Wistock, who works a full-time remote office job, figures she can make a small profit on the side by milking four goats and selling the milk for $6 a half-gallon jar.

Wistock already runs bacterial tests on milk for her own use, so it won’t be a big adjustment to follow the state’s new testing rules. She has built a small milking parlor in a trailer, complete with a vinyl floor that’s easy to scrub. Before milking, she cleans the goat’s teats with an antiseptic spray and paper towels. Her containers are washed in a dishwasher, then sanitized in a UV light chamber. She catches the milk in a stainless-steel pitcher and strains it through a filter into glass jars.

After collection, Wistock uses her freezer to chill the milk to 38 degrees, then she places it in the refrigerator. She sometimes pasteurizes goat milk before she turns it into cheese, “just to be safe.”

Wistock is confident that the raw milk she’ll sell is clean, but she knows any food product can carry risks. She’s not sure she would feed it to young children or people with weak immune systems. But she won’t ask what her customers plan to do with it. “I’m not going to tell other people what to drink,” she said.

This article was produced by KFF Health News, formerly known as Kaiser Health News (KHN), a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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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De Regnier is an osteopathic physician who chose to run a family practice in a small community. Many of his patients have been with him for years. Many have chronic health problems, such as diabetes, high blood pressure, or mental health struggles, which he helps manage before they become critical.

“I just decided I’d rather prevent fires than put them out,” he said between appointments on a recent afternoon.

Broad swaths of rural America don’t have enough primary care physicians, partly because many medical doctors prefer to work in highly paid specialty positions in cities. In many small towns, osteopathic doctors like de Regnier are helping fill the gap.

Osteopathic physicians, commonly known as DOs, go to separate medical schools from medical doctors, known as MDs. Their courses include lessons on how to physically manipulate the body to ease discomfort. But their training is otherwise comparable, leaders in both wings of the profession say.

Both types of doctors are licensed to practice the full range of medicine, and many patients would find little difference between them aside from the initials listed after their names.

DOs are still a minority among U.S. physicians, but their ranks are surging. From 1990 to 2022, their numbers more than quadrupled, from fewer than 25,000 to over 110,000, according to the Federation of State Medical Boards. In that same period, the number of MDs rose 91%, from about 490,000 to 934,000.

Over half of DOs work in primary care, which includes family medicine, internal medicine, and pediatrics. By contrast, more than two-thirds of MDs work in other medical specialties.

The number of osteopathic medical schools in the U.S. has more than doubled since 2000, to 40, and many of the new ones are in relatively rural states, including Idaho, Oklahoma, and Arkansas. School leaders say their locations and teaching methods help explain why many graduates wind up filling primary care jobs in smaller towns.

De Regnier noted that many MD schools are housed in large universities and connected to academic medical centers. Their students often are taught by highly specialized physicians, he said. Students at osteopathic schools tend to do their initial training at community hospitals, where they often shadow general practice doctors.

U.S. News & World Report ranks medical schools based on the percentage of graduates working in rural areas. Osteopathic schools hold three of the top four spots on the 2023 edition of that list.

William Carey University’s osteopathic school, in Hattiesburg, Mississippi, is No. 1 in that ranking. The program, which began in 2010, was intentionally sited in a region that needed more medical professionals, said Dean Italo Subbarao.

After finishing classwork, most William Carey medical students train in hospitals in Mississippi or Louisiana, Subbarao said. “Students become part of the fabric of that community,” he said. “They see the power and the value of a what a primary care doc in a smaller setting can have.”

Leaders from both sides of the profession say tension between DOs and MDs has eased. In the past, many osteopathic physicians felt their MD counterparts looked down on them. They were denied privileges in some hospitals, so they often founded their own facilities. But their training is now widely considered comparable, and students from both kinds of medical schools compete for slots in the same residency training programs.

Michael Dill, director of workforce studies at the Association of American Medical Colleges, said it makes sense that osteopathic school graduates are more likely to go into family practice, internal medicine, or pediatrics. “The very nature of osteopathic training emphasizes primary care. That’s kind of their thing,” said Dill, whose group represents MD medical schools.

Dill said he would be confident in the care provided by both types of doctors. “I would be equally willing to see either as my own primary care physician,” he said.

Data from the University of Iowa shows osteopathic physicians have been filling rural roles previously filled by medical doctors. The university’s Office of Statewide Clinical Education Programs tracks the state’s health care workforce, and its staff analyzed the data for KFF Health News.

The analysis found that, from 2008 to 2022, the number of Iowa MDs based outside the state’s 11 most urban counties dropped more than 19%. Over the same period, the number of DOs based outside those urban areas increased by 29%. Because of the shift, DOs now make up more than a third of rural Iowa physicians, and that proportion is expected to grow.

In Madison County, the picturesque rural area where de Regnier practices, the University of Iowa database lists seven physicians practicing family medicine or pediatrics. All are DOs.

De Regnier, 65, speculated that the local dominance of the osteopathic profession is partly due to the proximity of his alma mater, Des Moines University, which runs an osteopathic training center 35 miles northeast of Winterset.

Des Moines University has one of the country’s oldest osteopathic medical schools. It graduates about 210 DO students a year, compared with about 150 MD students who graduate annually from the University of Iowa, home to the state’s only other medical school.

Many patients probably pay no attention to whether a physician is an MD or a DO, but some seek the osteopathic type, said de Regnier, who is a past president of the American College of Osteopathic Family Physicians. Patients might like the physical manipulation DOs can use to ease aches in their limbs or back. And they might sense the profession’s focus on patients’ overall health, he said.

On a recent afternoon, de Regnier worked his way through a slate of patients, most of whom had seen him before.

One of them was Ben Turner, a 76-year-old pastor from the nearby town of Lorimor. Turner had come in for a check of his diabetes. He sat on the exam table with his shoes off and his eyes closed.

De Regnier took out a flexible plastic probe and instructed Turner to say when he felt it touch his feet. Then the doctor began to gently place the probe on the patient’s skin.

“Yup,” Turner said as the probe glanced against each toe. “Yup,” he said as de Regnier brushed the probe against his soles and moved to the other foot. “Yeah. Yeah. Yup. Yeah.”

The doctor offered good news: Turner had no signs of nerve damage in his feet, which is a common complication of diabetes. A blood sample showed he had a good A1C level, a measure of the disease. He had no heaviness in his chest, shortness of breath, or wheezing. Medication appeared to be staving off problems.

Chris Bourne, 55, of Winterset, stopped in to consult de Regnier about his mental health. Bourne has been seeing de Regnier for about five years.

Bourne takes pills for anxiety. With input from the doctor, he had reduced the dose. The anxious feelings crept back in, and he had trouble sleeping, he told de Regnier, sounding disappointed.

De Regnier noted the dose he prescribed to Bourne is relatively low, but he had approved of the attempt to reduce it. “I’m glad you tried,” he said. “Don’t beat yourself up.”

In an interview later, Bourne said that until he moved to Winterset five years ago, he’d never gone to an osteopathic physician — and didn’t know what one was. He’s come to appreciate the patience de Regnier shows in determining what might be causing a patient’s problem.

“When he sits down on that stool, he’s yours,” Bourne said.

Another patient that day was Lloyd Proctor Jr., 54, who was suffering from previously undiagnosed diabetes. His legs were swollen, and he felt run-down. Tests showed his blood sugar was more than four times the normal level.

“The pancreas isn’t happy right now, because it’s working too hard trying to take care of that blood sugar,” the doctor told him.

De Regnier diagnosed him with diabetes and prescribed medication and insulin, saying he would adjust the order if necessary to minimize Proctor’s costs after insurance. He brought out a syringe and showed Proctor how to give himself insulin injections. Proctor listened to advice on how to measure blood sugar.

“And maybe I should quit grabbing Mountain Dew every time I’m thirsty,” the patient said, ruefully.

De Regnier smiled. “I was just getting to that,” he said.

The appointment was one of the doctor’s longest of the day. At the end, he reassured Proctor that they could get his diabetes under control together.

“I know that’s a lot of info. If you get home and think, ‘What’d he say?’ — don’t hesitate to pick up the phone and give me a call,” de Regnier said. “I’m happy to visit anytime.”

This article was produced by KFF Health News, formerly known as Kaiser Health News (KHN), a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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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This story can be republished for free (details).

The young woman, known as Sammee, had become unusually sad and lethargic after falling in the shower and hitting her head. She lost her limited ability to speak, stopped laughing, and no longer wanted to leave the house.

General-practice doctors and a neurologist said such mental deterioration was typical for a person with Down syndrome entering adulthood, recalled her mother, Marilyn Lesmeister. They said nothing could be done.

The family didn’t buy it.

Marilyn researched online and learned the University of Kansas Health System has a special medical clinic for adults with Down syndrome. Most other Down syndrome programs nationwide focus on children, even though many people with the condition now live into middle age and often develop health problems typically associated with seniors. And most of the clinics that focus on adults are in urban areas, making access difficult for many rural patients.

The clinic Marilyn found is in Kansas City, Kansas, 80 miles northwest of the family’s cattle farm in central Missouri. She made an appointment for her daughter and drove up.

The program’s leader, nurse practitioner Moya Peterson, carefully examined Sammee Lesmeister and ordered more tests.

“She reassured me that, ‘Mom, you’re right. Something’s wrong with your daughter,’” Marilyn Lesmeister said.

With the help of a second neurologist, Peterson determined Sammee Lesmeister had suffered a traumatic brain injury when she hit her head. Since that diagnosis about nine years ago, she has regained much of her strength and spirit with the help of therapy and steady support.

Sammee, now 27, can again speak a few words, including “hi,” “bye,” and “love you.” She smiles and laughs. She likes to go out into her rural community, where she helps choose meals at restaurants, attends horse-riding sessions at a stable, and folds linens at a nursing home.

Without Peterson’s insight and encouragement, the family likely would have given up on Sammee’s recovery. “She probably would have continued to wither within herself,” her mother said. “I think she would have been a stay-at-home person and a recluse.”

‘A Whole Different Ballgame’

The Lesmeisters wish Peterson’s program wasn’t such a rarity. A directory published by the Global Down Syndrome Foundation lists just 15 medical programs nationwide that are housed outside of children’s hospitals and that accept Down syndrome patients who are 30 or older.

The United States had about three times as many adults with the condition by 2016 as it did in 1970. That’s mainly because children born with it are no longer denied lifesaving care, including surgeries to correct birth defects.

Adults with Down syndrome often develop chronic health problems, such as severe sleep apnea, digestive disorders, thyroid conditions, and obesity. Many develop Alzheimer’s disease in middle age. Researchers suspect this is related to extra copies of genes that cause overproduction of proteins, which build up in the brain.

“Taking care of kids is a whole different ballgame from taking care of adults,” said Peterson, the University of Kansas nurse practitioner.

Sammee Lesmeister is an example of the trend toward longer life spans. If she’d been born two generations ago, she probably would have died in childhood.

She had a hole in a wall of her heart, as do about half of babies with Down syndrome. Surgeons can repair those dangerous defects, but in the past, doctors advised most families to forgo the operations, or said the children didn’t qualify. Many people with Down syndrome also were denied care for serious breathing issues, digestive problems, or other chronic conditions. People with disabilities were often institutionalized. Many were sterilized without their consent.

Such mistreatment eased from the 1960s into the 1980s, as people with disabilities stood up for their rights, medical ethics progressed, and courts declared it illegal to withhold care. “Those landmark rulings sealed the deal: Children with Down syndrome have the right to the same lifesaving treatment that any other child would deserve,” said Brian Skotko, a Harvard University medical geneticist who leads Massachusetts General Hospital’s Down Syndrome Program.

The median life expectancy for a baby born in the U.S. with Down syndrome jumped from about four years in 1950 to 58 years in the 2010s, according to a recent report from Skotko and other researchers. In 1950, fewer than 50,000 Americans were living with Down syndrome. By 2017, that number topped 217,000, including tens of thousands of people in middle age or beyond.

The population is expected to continue growing, the report says. A few thousand pregnant women a year now choose abortions after learning they’re carrying fetuses with Down syndrome. But those reductions are offset by the increasing number of women becoming pregnant in their late 30s or 40s, when they are more likely to give birth to a baby with Down syndrome.

Skotko said the medical system has not kept up with the extraordinary increase in the number of adults with Down syndrome. Many medical students learn about the condition only while training to treat pediatric patients, he said.

Few patients can travel to specialized clinics like Skotko’s program in Boston. To help those who can’t, he founded an online service, Down Syndrome Clinic to You, which helps families and medical practitioners understand the complications and possible treatments.

‘If They Say It Hurts, I Listen’

Charlotte Woodward, who has Down syndrome, is a prominent advocate for improved care. She counts herself among the tens of thousands of adults with the condition who likely would have died years ago without proper treatment. Woodward, 33, of Fairfax, Virginia, had four heart surgeries as a child and then a heart transplant in her 20s.

Woodward, who is an education program associate for the National Down Syndrome Society, has campaigned to end discrimination against people with disabilities who need organ transplants.

She said her primary care doctor is excellent. But she has felt treated like a child by other health care providers, who have spoken to her parents instead of to her during appointments.

She said many general-practice doctors seem to have little knowledge about adults with Down syndrome. “That’s something that should change,” she said. “It shouldn’t just be pediatricians that are aware of these things.”

Woodward said adults with the condition should not be expected to seek care at programs housed in children’s hospitals. She said the country should set up more specialized clinics and finance more research into health problems that affect people with disabilities as they age. “This is really an issue of civil rights,” she said.

Advocates and clinicians say it’s crucial for health care providers to communicate as much as possible with patients who have disabilities. That can lead to long appointments, said Brian Chicoine, a family practice physician who leads the Adult Down Syndrome Center of Advocate Aurora Health in Park Ridge, Illinois, near Chicago.

“It’s very important to us that we include the individuals with Down syndrome in their care,” he said. “If you’re doing that, you have to take your time. You have to explain things. You have to let them process. You have to let them answer. All of that takes more time.”

Time costs money, which Peterson believes is why many hospital systems don’t set up specialized clinics like the ones she and Chicoine run.

Peterson’s methodical approach was evident as she saw new patients on a recent afternoon at her Kansas City clinic. She often spends an hour on each initial appointment, speaking directly to patients and giving them a chance to share their thoughts, even if their vocabularies are limited.

Her patients that day included Christopher Yeo, 44, who lives 100 miles away in the small town of Hartford, Kansas. Yeo had become unable to swallow solid food, and he’d lost 45 pounds over about 1½ years. He complained to his mother, Mandi Nance, that something “tickled” in his chest.

During his exam, he lifted his shirt for Peterson, revealing the scar where he’d had heart surgery as a baby. He grimaced, pointed to his chest, and repeatedly said the word “gas.”

Peterson looked Yeo in the eye as she asked him and his mother about his discomfort.

The nurse practitioner takes seriously any such complaints from her patients. “If they say it hurts, I listen,” she said. “They’re not going to tell you about it until it hurts bad.”

Yeo’s mother had taken him to a cardiologist and other specialists, but none had determined what was wrong.

Peterson asked numerous questions. When does Yeo’s discomfort seem to crop up? Could it be related to what he eats? How is his sleep? What are his stools like?

After his appointment, Peterson referred Yeo to a cardiologist who specializes in adults with congenital heart problems. She ordered a swallowing test, in which Yeo would drink a special liquid that appears on scans as it goes down. And she recommended a test for Celiac disease, an autoimmune disorder that interferes with digestion and is common in people with Down syndrome. No one had previously told Nance about the risk.

Nance, who is a registered nurse, said afterward that she has no idea what the future holds for their family. But she was struck by the patience and attention Peterson and other clinic staff members gave to her son. Such treatment is rare, she said. “I feel like it’s a godsend. I do,” she said. “I feel like it’s an answered prayer.”

‘Like a Person, and Not a Condition’

Peterson serves as the primary care provider for some of her patients with Down syndrome. But for many others, especially those who live far away, she is someone to consult when complications arise. That’s how the Lesmeisters use her clinic.

Mom Marilyn is optimistic Sammee can live a fulfilling life in their community for years to come. “Some people have said I need to put her in a home. And I’m like, ‘What do you mean?’ And they say, ‘You know ― a home,’” she said. “I’m like, ‘She’s in a home. Our home.’”

Sammee’s sister, who lives in Texas, has agreed to take her in when their parents become too old to care for her.

Marilyn’s voice cracked with emotion as she expressed her gratitude for the help they have received and her hopes for Sammee’s future.

“I just want her to be taken care of and loved like I love her,” she said. “I want her to be taken care of like a person, and not a condition.”

This article was produced by KFF Health News, formerly known as Kaiser Health News (KHN), a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

Helm lives in a nursing home in this central Iowa town of about 7,500 people, where mental health services are sparse. On a recent morning, she had an appointment with a psychiatric nurse practitioner about 800 miles away in Austin, Texas. They spoke via video, with Helm using an iPad she held on her lap while sitting in her bed.

Video visits are an increasingly common way for residents of small-town nursing homes to receive mental health care. Patients don’t have to travel to a clinic. They don’t even have to get cleaned up and leave their bedrooms, which can be daunting for people with depression or anxiety. Online care providers face fewer appointment cancellations, and they often can work from home. While use of some other telehealth services may dwindle as the covid-19 pandemic winds down, providers predict demand for remote mental health services will continue to increase in rural nursing homes.

“Are you anxious when you try to fall asleep? Is your mind racing?” asked the nurse practitioner, Ayesha Macon.

“Yeah, that’s sort of my time to think,” Helm said. Her thoughts can keep her up past 3 a.m., she said.

They discussed the anxiety Helm sometimes feels during the day and her routine of watching the TV news at 10 p.m. Macon suggested the news might wind Helm up, and she wondered if the 71-year-old patient could ease stress by skipping the news before going to bed.

“No,” Helm said. “I find it interesting. I want to know what’s going on in the world. I’ve always been a bit of a newshound.”

Macon smiled and said she understood. So they talked about other approaches, including using online meditation programs and spending quiet time reading the dozens of novels Helm keeps stacked in her room. “If I couldn’t read, I think I would go absolutely bananas,” she told Macon, who agreed it was a good habit.

Telemedicine visits became much more common throughout the American health care system during the pandemic, as guidelines on “social distancing” curtailed in-person appointments and insurers eased restrictions on what they would cover. The number of telehealth visits paid for by Medicare jumped tenfold in the last nine months of 2020 compared with the same period a year before.

Supporters of online treatment say it’s a good match for mental health care, especially in settings where in-person services have been hard to arrange. They cite small-town nursing homes as prime examples. The company that arranged Helm’s recent appointment, Encounter Telehealth, serves more than 200 nursing homes and assisted living centers, mostly in the Midwest. About 95% of those facilities are in rural areas, said Jen Amis, president of the company, which is based in Omaha, Nebraska.

Encounter Telehealth uses about 20 mental health professionals, many of whom are psychiatric nurse practitioners living in cities. The practitioners read the patients’ electronic medical records through a secure computer system, and they review symptoms and medications with nursing home staff members before each appointment. They complete up to 2,000 visits a month.

It’s important for seniors to have expert support as they face stress and uncertainty in aging, Amis said. “We’re all going to be there at some point,” she said. “Don’t you want that last chapter to be peaceful?”

The company saw demand for its services surge in care facilities when the pandemic hit. Nursing homes were closed to visitors for months at a time while the coronavirus caused thousands of illnesses and deaths among residents and employees. The stress could be overwhelming for everyone involved. “Oh, my gosh, the isolation and fear,” Amis said.

Amis said several developments have made her company’s services possible. Electronic medical records and video systems are crucial. Also, she said, many states have given more independent authority to nurse practitioners and other nonphysicians, and it has become easier to bill public and private insurance plans for mental health treatment.

The federal government could tighten rules for some kinds of telehealth care as the pandemic wanes. But Medicare paid for many remote mental health visits to rural areas before covid, and Amis expects the support to continue.

Jonathan Neufeld, program director of the Great Plains Telehealth Resource and Assistance Center at the University of Minnesota, said in-person mental health care can be hard to arrange in rural care facilities.

“You’ve got a double or even triple whammy going right now,” said Neufeld, a psychologist whose center is supported by federal grants.

He noted the number of mental health professionals nationally has been insufficient for many years, even before the pandemic. And all kinds of rural employers, including nursing homes, face critical staffing shortages.

Neufeld said telehealth visits can be a challenge for some care-facility residents, including those with dementia, who might not understand how a video feed works. But he said it also can be difficult to treat people with dementia in person. Either way, a staff member or relative needs to accompany them during appointments and the mental health professional generally consults with facility staff about a patient’s treatment.

Before telemedicine was available, more residents of rural nursing homes needed to be driven to a clinic in another town to see a mental health professional. That could eat up hours of staff time and add stress to the patients’ lives.

Seleta Stewart, a certified nursing assistant at the Accura HealthCare nursing home where Helm lives, said the facility’s need for the telehealth service is increasing, partly because the facility is home to several younger residents with mental illnesses. In the past, she said, many such Iowans would have been served by specialized facilities, such as two state mental hospitals that closed in 2015. But more now live in nursing homes.

“Iowa is just not a great state for mental health,” Stewart said.

Neufeld said that, even with telemedicine’s efficiencies, staffing can be a challenge for companies providing the service in nursing homes. Many mental health professionals already have more patients than they can handle, and they might not have time to pitch in online. He added that Medicare, which insures most seniors, pays lower rates than private insurers or patients paying on their own.

Amis, Encounter Telehealth’s president, said Medicare pays about $172 for an initial appointment and about $107 for a follow-up appointment; care providers collect roughly 30% to 75% more from patients who use private insurance or pay their own bills, she said. She added that nursing homes pay a fee to Encounter for the convenience of having mental health professionals visit by video.

Several patients and care providers said the shift to video appointments is usually smooth, despite seniors’ reputation for being uncomfortable with new technology.

Dr. Terry Rabinowitz, a psychiatrist and professor at the University of Vermont, has been providing telemedicine services to a rural nursing home in upstate New York since 2002. He said many patients quickly adjust to video visits, even if it’s not their initial preference.

“I think most people, if they had their druthers, would rather see me in person,” he said. “And if I had my druthers, I’d rather see them in person.” Online visits can have special challenges, including for patients who don’t hear or see well, he said. But those complications can be addressed.

Nancy Bennett, another resident of Helm’s Iowa nursing home, can attest to the benefits. Bennett had a video appointment with Macon on a recent morning. She told the nurse practitioner she’d been feeling stressed. “I’m 72, I’m in a nursing home, I’ve got no family around, so yeah, I’m a little depressed,” she said. “I do get sad sometimes.”

“That’s normal,” Macon assured her.

Bennett said she dislikes taking a lot of pills. Macon said she could taper some of Bennett’s medication.

In an interview afterward, Bennett said she’d gone to a clinic for mental health care in the past. That was before physical issues forced her into the nursing home, where she spends much of her time sitting in a blue recliner in her room.

If she’d had to get dressed and travel for her appointment with Macon, she said, she probably would have canceled. “There are days when I don’t want to be bothered,” she said.

But on this day, the mental health professional came to her on an iPad ― and helped Bennett feel a little better.

This story was produced by KHN (Kaiser Health News), a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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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“Dear FAMILY OF FRANCES RUHL,” the letter began. “We have been informed of the death of the above person, and we wish to express our sincere condolences.”

The letter got right to the point: Iowa’s Medicaid program had spent $226,611.35 for Ruhl’s health care, and the government was entitled to recoup that money from her estate, including nearly any assets she owned or had a share in. If a spouse or disabled child survived Ruhl, the collection could be delayed until after their death, but the money would still be owed.

The notice said the family had 30 days to respond.

“I said, ‘What is this letter for? What is this?’” said Ruhl’s daughter, Jen Coghlan.

It seemed bogus, but it was real. Federal law requires all states to have “estate recovery programs,” which seek reimbursements for spending under Medicaid, the joint federal and state health insurance program for people with low incomes or disabilities. The recovery efforts collect more than $700 million a year, according to a 2021 report from the Medicaid and CHIP Payment and Access Commission, or MACPAC, an agency that advises Congress.

States have leeway to decide whom to bill and what type of assets to target. Some states collect very little. For example, Hawaii’s Medicaid estate recovery program collected just $31,000 in 2019, according to the federal report.

Iowa, whose population is about twice Hawaii’s, recovered more than $26 million that year, the report said.

Iowa uses a private contractor to recoup money spent on Medicaid coverage for any participant who was 55 or older or was a resident of a long-term care facility when they died. Even if an Iowan used few health services, the government can bill their estate for what Medicaid spent on premiums for coverage from private insurers known as managed-care organizations.

Supporters say the clawback efforts help ensure people with significant wealth don’t take advantage of Medicaid, a program that spends more than $700 billion a year nationally.

Critics say families with resources, including lawyers, often find ways to shield their assets years ahead of time — leaving other families to bear the brunt of estate recoveries. For many, the family home is the most valuable asset, and heirs wind up selling it to settle the Medicaid bill.

For the Ruhl family, that would be an 832-square-foot, steel-sided house that Fran Ruhl and her husband, Henry, bought in 1964. It’s in a modest neighborhood in Perry, a central Iowa town of 8,000 people. The county tax assessor estimates it’s worth $81,470.

Henry Ruhl, 83, wanted to leave the house to Coghlan, but since his wife was a joint owner, the Medicaid recovery program could claim half the value after his death.

Fran Ruhl, a retired child care worker, was diagnosed with Lewy body dementia, a debilitating brain disorder. Instead of placing her in a nursing home, the family cared for her at home. A case manager from the Area Agency on Aging suggested in 2014 they look into the state’s “Elderly Waiver” program to help pay expenses that weren’t covered by Medicare and Tricare, the military insurance Henry Ruhl earned during his Iowa National Guard career.

Coghlan still has paperwork the family filled out. The form said the application was for people who wanted to get “Title 19 or Medicaid,” but then listed “other programs within the Medical Assistance Program,” including Elderly Waiver, which the form explained “helps keep people at home and not in a nursing home.”

Coghlan said the family didn’t realize the program was an offshoot of Medicaid, and the paperwork in her file did not clearly explain the government might seek reimbursement for properly paid benefits.

Some of the Medicaid money went to Coghlan for helping care for her mother. She paid income taxes on those wages, and she said she likely would have declined to accept the money if she’d known the government would try to scoop it back after her mother died.

Iowa Medicaid Director Elizabeth Matney said that in recent years the state added clearer notices about the estate recovery program on forms people fill out when they apply for coverage.

“We do not like families or members being caught off guard,” she said in an interview. “I have a lot of sympathy for those people.”

Matney said her agency has considered changes to the estate recovery program, and she would not object if the federal government limited the practice. Iowa’s Medicaid estate collections topped $30 million in fiscal year 2022, but that represented a sliver of Medicaid spending in Iowa, which is over $6 billion a year. And more than half the money recouped goes back to the federal government, she said.

Matney noted families can apply for “hardship exemptions” to reduce or delay recovery of money from estates. For example, she said, “if doing any type of estate recovery would deny a family of basic necessities, like food, clothing, shelter, or medical care, we think about that.”

Sumo Group, a private company that runs Iowa’s estate recovery program, reported that 40 hardship requests were granted in fiscal 2022, and 15 were denied. The Des Moines company reported collecting money from 3,893 estates that year. Its director, Ben Chatman, declined to comment to KHN. Sumo Group is a subcontractor of a national company, Health Management Systems, which oversees Medicaid estate recoveries in several states. The national company declined to identify which states it serves or discuss its methods. Iowa pays the companies 11% of the proceeds from their estate recovery collections.

The 2021 federal advisory report urged Congress to bar states from collecting from families with meager assets, and to let states opt out of the effort altogether. “The program mainly recovers from estates of modest size, suggesting that individuals with greater means find ways to circumvent estate recovery and raising concerns about equity,” the report said.

U.S. Rep. Jan Schakowsky introduced a bill in 2022 that would end the programs.

The Illinois Democrat said many families are caught unawares by Medicaid estate recovery notices. Their loved ones qualified for Medicaid participation, not realizing it would wind up costing their families later. “It’s really a devastating outcome in many cases,” she said.

Schakowsky noted some states have tried to avoid the practice. West Virginia sued the federal government in an attempt to overturn the requirement that it collect against Medicaid recipients’ estates. That challenge failed.

Schakowsky’s bill had no Republican co-sponsors and did not make it out of committee. But she hopes the proposal can move ahead, since every member of Congress has constituents who could be affected: “I think this is the beginning of a very worthy and doable fight.”

States can limit their collection practices. For example, Massachusetts implemented changes in 2021 to exempt estates of $25,000 or less. That alone was expected to slash by half the number of targeted estates.

Massachusetts also made other changes, including allowing heirs to keep at least $50,000 of their inheritance if their incomes are less than 400% of the 2022 federal poverty level, or about $54,000 for a single person.

Prior to the changes, Massachusetts reported more than $83 million in Medicaid estate recoveries in 2019, more than any other state, according to the MACPAC report.

Supporters of estate recovery programs say they provide an important safeguard against misuse of Medicaid.

Mark Warshawsky, an economist for the conservative American Enterprise Institute, argues that other states should follow Iowa’s lead in aggressively recouping money from estates.

Warshawsky said many other states exclude assets that should be fair game for recovery, including tax-exempt retirement accounts, such as 401(k)s. Those accounts make up the bulk of many seniors’ assets, he said, and people should tap the balances to pay for health care before leaning on Medicaid.

Warshawsky said Medicaid is intended as a safety net for Americans who have little money. “It’s the absolute essence of the program,” he said. “Medicaid is welfare.”

People should not be able to shelter their wealth to qualify, he said. Instead, they should be encouraged to save for the possibility they’ll need long-term care, or to buy insurance to help cover the costs. Such insurance can be expensive and contain caveats that leave consumers unprotected, so most people decline to buy it. Warshawsky said that’s probably because people figure Medicaid will bail them out if need be.

Eric Einhart, a New York lawyer and board member of the National Academy of Elder Law Attorneys, said Medicaid is the only major government program that seeks reimbursement from estates for properly paid benefits.

Medicare, the giant federal health program for seniors, covers virtually everyone 65 or older, no matter how much money they have. It does not seek repayments from estates.

“There’s a discrimination against what I call ‘the wrong type of disease,’” Einhart said. Medicare could spend hundreds of thousands of dollars on hospital treatment for a person with serious heart problems or cancer, and no government representatives would try to recoup the money from the person’s estate. But people with other conditions, such as dementia, often need extended nursing home care, which Medicare won’t cover. Many such patients wind up on Medicaid, and their estates are billed.

On a recent afternoon, Henry Ruhl and his daughter sat at his kitchen table in Iowa, going over the paperwork and wondering how it would all turn out.

The family found some comfort in learning that the bill for Fran Ruhl’s Medicaid expenses will be deferred as long as her husband is alive. He won’t be kicked out of his house. And he knows his wife’s half of their assets won’t add up to anything near the $226,611.35 the government says it spent on her care.

“You can’t get — how do you say it?” he asked.

“Blood from a turnip,” his daughter replied.

“That’s right,” he said with a chuckle. “Blood from a turnip.”

This story was produced by KHN (Kaiser Health News), a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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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The Good Samaritan Society facility in Postville, Iowa, would close, administrators told Kruger and 38 other residents in September. The facility joined a growing list of nursing homes being shuttered nationwide, especially in rural areas.

“The rug was taken out from under me,” said Kruger, 98. “I thought I was going to stay there the rest of my life.”

Her son found a room for her in another Good Samaritan center in Waukon, a small town 18 miles north of Postville. Kruger said the new facility is a pleasant place, but she misses her friends and longtime staffers from the old one. “We were as close as a nice family,” she said.

The Postville facility’s former residents are scattered across northeastern Iowa. Some were forced to move twice, after the first nursing home they transferred to also went out of business.

Owners say the closures largely stem from a shortage of workers, including nurses, nursing assistants, and kitchen employees.

The problem could deepen as pandemic-era government assistance dries up and care facilities struggle to compete with rising wages offered by other employers, industry leaders and analysts predict. Many care centers that have managed to remain open are keeping some beds vacant because they don’t have enough workers to responsibly care for more residents.

The pandemic brought billions of extra federal dollars to the long-term care industry, which was inundated with covid-19 infections and more than 160,000 resident deaths. Many facilities saw business decline amid lockdowns and reports of outbreaks. Staff members faced extra danger and stress.

The industry is still feeling the effects.

From February 2020 to November 2021, the number of workers in nursing homes and other care facilities dropped by 410,000 nationally, according to the federal Bureau of Labor Statistics. Staffing has rebounded only by about 103,000 since then.

In Iowa, 13 of the 15 nursing homes that closed in 2022 were in rural areas, according to the Iowa Health Care Association. “In more sparsely populated areas, it’s harder and harder to staff those facilities,” said Brent Willett, the association’s president. He noted that many rural areas have dwindling numbers of working-age adults.

The lack of open nursing home beds is marooning some patients in hospitals for weeks while social workers seek placements. More people are winding up in care facilities far from their hometowns, especially if they have dementia, obesity, or other conditions that require extra attention.

Colorado’s executive director of health care policy and financing, Kim Bimestefer, told a conference in November that the state recognizes it needs to help shore up care facilities, especially in rural areas. “We’ve had more nursing homes go bankrupt in the last year than in the last 10 years combined,” she said.

In Montana, at least 11 nursing homes — 16% of the state’s facilities — closed in 2022, the Billings Gazette reported.

Nationally, the Centers for Medicare & Medicaid Services reported recently that 129 nursing homes had closed in 2022. Mark Parkinson, president of the American Health Care Association, said the actual count was significantly higher but the federal reports tend to lag behind what’s happening on the ground.

For example, a recent KHN review showed the federal agency had tallied just one of the 11 Montana nursing home closures reported by news outlets in that state during 2022, and just eight of the 15 reported in Iowa.

Demand for long-term care is expected to climb over the next decade as the baby boom generation ages. Willett said his industry supports changing immigration laws to allow more workers from other countries. “That’s got to be part of the solution,” he said.

The nursing home in Postville, Iowa, was one of 10 care centers shuttered in the past year by the Good Samaritan Society, a large chain based in South Dakota.

“It’s an absolute last resort for us, being a nonprofit organization that would in many cases have been in these communities 50 to 75 years or more,” said Nate Schema, the company’s CEO.

The Evangelical Lutheran Good Samaritan Society, the full name of the company, is affiliated with the giant Sanford Health network and serves 12,500 clients, including residents of care facilities and people receiving services in their homes. About 70% of them live in rural areas, mainly in the Plains states and Midwest, Schema said.

Schema said many front-line workers in nursing homes found less stressful jobs after working through the worst days of the covid pandemic, when they had to wear extra protective gear and routinely get screened for infection in the face of ongoing risk.

Lori Porter, chief executive officer of the National Association of Health Care Assistants, said nursing home staffing issues have been building for years. “No one that’s been in this business is in shock over the way things are,” she said. “The pandemic put a spotlight on it.”

Porter, who has worked as a certified nursing assistant and as a nursing home administrator, said the industry should highlight how rewarding the work can be and how working as an aide can lead to a higher-paying job, including as a registered nurse.

Care industry leaders say that they have increased wages for front-line workers but that they can’t always keep up with other industries. They say that’s largely because they rely on payments from Medicaid, the government program for low-income Americans that covers the bills for more than 60% of people living in nursing homes.

In recent years, most states have increased how much their Medicaid programs pay to nursing homes, but those rates are still less than what the facilities receive from other insurers or from residents paying their own way. In Iowa, Medicaid pays nursing homes about $215 per day per resident, according to the Iowa Health Care Association. That compares with about $253 per day for people paying their own way. When nursing homes provide short-term rehabilitation for Medicare patients, they receive about $450 per day. That federal program does not cover long-term care, however.

Willett said a recent survey found that 72% of Iowa’s remaining nursing homes were freezing or limiting admissions below their capacity.

The Prairie View nursing home in Sanborn is one of them. The facility, owned by a local nonprofit, is licensed for up to 73 beds. Lately, it has been able to handle only about 48 residents, said administrator Wendy Nelson.

“We could take more patients, but we couldn’t give them the care they deserve,” she said.

Prairie View’s painful choices have included closing a 16-bed dementia care unit last year.

Nelson has worked in the industry for 22 years, including 17 at Prairie View. It never has been easy to keep nursing facilities fully staffed, she said. But the pandemic added stress, danger, and hassles.

“It drained the crud out of some people. They just said, ‘I’m done with it,’” she said.

Prairie View has repeatedly boosted pay, with certified nursing assistants now starting at $21 per hour and registered nurses at $40 per hour, Nelson said. But she’s still seeking more workers.

She realizes other rural employers also are stretched.

“I know we’re all struggling,” Nelson said. “Dairy Queen’s struggling too, but Dairy Queen can change their hours. We can’t.”

David Grabowski, a professor of health care policy at Harvard Medical School, said some of the shuttered care facilities had poor safety records. Those closures might not seem like a tragedy, especially in metro areas with plenty of other choices, he said.

“We might say, ‘Maybe that’s the market working, the way a bad restaurant or a bad hotel is closing,’” he said. But in rural areas, the closure of even a low-quality care facility can leave a hole that’s hard to fill.

For many families, the preferred alternative would be in-home care, but there’s also a shortage of workers to provide those services, he said.

The result can be prolonged hospital stays for patients who could be served instead in a care facility or by home health aides, if those services were available.

Rachel Olson, a social worker at Pocahontas Community Hospital in northwestern Iowa, said some patients wait a month or more in her hospital while she tries to find a spot for them in a nursing home once they’re stable enough to be transferred.

She said it’s particularly hard to place certain types of patients, such as those who need extra attention because they have dementia or need intravenous antibiotics.

Olson starts calling nursing homes close to the patient’s home, then tries ones farther away. She has had to place some people up to 60 miles away from their hometowns. She said families would prefer she find something closer. “But when I can’t, I can’t, you know? My hands are tied.”

This story was produced by KHN (Kaiser Health News), a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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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