Brandon Will had a life plan: go to grad school for creative writing in New York City and eventually get a job in publishing. But then his mother, Janice, came to visit. She had lost a “startling” amount of weight, he said. At 62, she wanted to take cabs for short distances. He noticed a stiffness in her facial muscles that made it difficult for her to express emotion. “I’d be taking selfies and she couldn’t smile,” he recalled.
Within a year she would be diagnosed with Parkinson’s disease. “It got real serious real quick,” Will said. He decided to sublet his room in New York and move home to Detroit for three months. “I thought we’d get her back to where she’d been before the spiral happened.” It’s now been five years, and Will still lives with her, monitoring her meals, doling out her medications, and helping her get around the house without falling.
Will said his family was “very blue collar.” His father was an electrician, and his mother paused her freelance writing career to be a stay-at-home parent. “We had always been kind of broke, but my parents did a great job working with so little,” he said. There were no college funds, but there was always food on the table and money for book fairs. In retirement, Janice lives on a modest 401(k) account and receives a portion of Brandon’s father’s pension. A few years ago, a doctor wrote Janice a prescription for home health care, and an aide came to assess her. He outlined a care plan, but Medicare refused to cover it. Medicaid might, but Janice’s modest income makes her ineligible for it.
One way or another, long-term care is likely to touch all of our lives. Those with incomes low enough to qualify for Medicaid can get coverage for nursing home stays or, for a lucky few, care inside their homes, and an even smaller number can afford private long-term care insurance. Outside of that, there is no system for helping us afford the care we need if we are fortunate enough to live long lives.
“Our country has never had a long-term care system,” said Ai-jen Poo, director of the advocacy organization Caring Across Generations. When the United States implemented programs like Medicare and Medicaid, life expectancy was far shorter and support for aging wasn’t on the agenda. The issue hasn’t garnered much political attention since then. Americans don’t like to think about death, aging, or disabilities. “We’ve been youth-focused and ability-focused,” said Sarah Szanton, director of the Center for Innovative Care in Aging at the Johns Hopkins School of Nursing. “We have so much ableism, and we have viewed [aging] traditionally as a private matter.”
Today, the United States has a tattered state-by-state patchwork instead of a comprehensive social safety net. “We call it the nonsystem of long-term care,” said Susan Reinhard, senior vice president and director at the AARP Public Policy Institute. Most people assume that Medicare will cover long-term care, but it doesn’t automatically pay for even short-term assisted living or nursing home stays. In rare cases it will cover short-term in-home care from a certified aide. Medicaid covers nursing homes and, in some states, will sometimes cover home care, but many only qualify after they have spent down their assets—often by paying out of pocket for costly nursing home stays.
There’s also a serious mismatch between what families can access through Medicaid and what Americans want when they age. Nearly 90 percent of Americans say they want to age at home, but few get to do so. More than 800,000 people are on state waiting lists to get home-based care through Medicaid. Waiting lists are a problem of supply. Home health care aides make a median hourly wage of $13, frequently don’t receive any benefits, and have few possibilities for advancement. The job is physically demanding and emotionally taxing, so there is a chronic shortage and lots of turnover.
If they can afford it, Americans can buy private long-term care insurance, but very few—7.5 million—do. The policies tend to be restrictive about what services and providers they’ll cover, and they often deny coverage based on preexisting conditions. Some won’t pay benefits in the case of common conditions like Alzheimer’s or diabetes. And premiums are high, since only those who are most vulnerable and costly to insure tend to buy it.
A nationwide long-term care system may not seem utopian—the idea appears so commonsensical that many Americans assume we already have one. But crafting something functional and humane would be an incredibly ambitious effort, requiring creative thinking, robust resources, and vast political will.
A truly functioning system would offer people a variety of choices. Some people may need a nursing home or assisted living. Others may choose to pay a family member or a friend to provide care, or to hire a professional aide. All options would have to be of high quality, which requires big investments in the workforce.
To make the system affordable, it needs to be universal: We all pay into it, and we all know what the program covers. It would be “just like [how] a certain part of our paychecks go to Social Security. We know at the end, more or less, what that means when we retire,” said Kenneth Knapp, director of the Center for Long-Term Care at New York Medical College. Poo proposes a new Medicare program to cover long-term care for those who are eligible—“Medicare Part X,” she suggested. And she calls for a brand-new, nationwide social insurance program for everyone else. “We need a public infrastructure, a public system that allows us to pool the risks associated with long-term care.” That way we could “have enough resources in the system to both support access to the services and a strong workforce.”
That’s a tall order in a country that hasn’t created a new social safety net program in decades. But without it, the responsibility typically falls on family members. More than 40 million Americans are providing unpaid elder care. Those caregivers take on a critical role without typically knowing much about what they’re getting into—nearly always stepping in after an emergency—and with few supports.
Brandon Will and his mother were always close. If he was sick or short on rent, she’s the one he would call. Even when he lived in New York, they would go to see the same movie at the same time in their different cities and get on the phone to talk about it afterward.
Will had, even in his 30s, already envisioned what the future would look like for the two of them: He would move back to Chicago after grad school, and Janice would retire and move close to him. But that was supposed to be when he was in his 40s or 50s—not now. And yet today they’ve moved to a one-story house in Chicago; Will has a bedroom in the garage.
Janice has cognitive and balance issues from Parkinson’s. She also began to suffer from debilitating chronic pain that turned out to be fibromyalgia. After the home health aide came, Will took the binder of physical therapy activities he left behind and began trying to implement the regimen himself. But less than a year after the aide visited, his mother fell and snapped her femur while trying to negotiate the surface change between the kitchen tile and the hallway carpet. Will thinks she “absolutely” wouldn’t have been so severely injured and needed surgery if they’d had more support.
These days he helps Janice with things large and small. He lines up activities and phone calls to keep her mind active. Walking is difficult for her, so he has to be at her side even though she uses a walker. It can take her almost an hour to get to the corner of the block. He makes sure she eats at certain times so that she can take her medications as prescribed. After another bad fall last summer, he helps her get to and from the bathroom at night.
Will bemoans the fact that her care is reactive, not proactive. Medicare will cover things that are medically necessary, such as the walker after Janice broke her femur, but not assistive devices that could actually prevent a fall, like bars to help her get in and out of the bathtub. He’s done what he can to learn how to be a good caregiver: reading articles, going to Parkinson’s caregiver support groups, joining groups on Facebook. He takes notes every time Janice has physical therapy sessions so he can help her repeat the exercises. “But man, I wish we’d had this one guy who was ready to tell us everything,” he said of the home health aide who came for the assessment. “You’re thrown out there on your own, and you’re trying to piecemeal assemble your plan.”
The situation also makes it difficult for Will to pursue his career. He had just been offered a low-level job in publishing when he moved home to care for Janice. For the first few years he kept thinking he could get back to that plan, or at the very least use the time at home to finish a book he’s writing. “Yeah, it was not a writing retreat,” he said with a laugh. “Your anxiety is growing: Am I going to miss my window?” He’s started freelancing, but he doesn’t have the mental capacity to hustle for more work, nor does he have consistent days and times when he knows he’ll be free to do it. Finances are incredibly tight, and they eased only slightly during the pandemic, because his student loan payments were put on hold.
Having a home health care aide help Janice, even for a few hours a week, would make an enormous difference. “It would completely change my life if we could get someone to come a couple times a week,” he said.
Caregiving is already a crisis for American families, but it’s only going to get worse, and quickly. From 2018 to 2030, the number of Americans age 65 and older is predicted to increase by more than 60 percent. By 2034, the country is expected to have more seniors than children. This growth, fueled by the aging baby boom generation, “is unprecedented in the history of the country,” Knapp said.
Washington state may be the best prepared to weather the coming silver tsunami. John Alexander, 71, has been living in a rented room in Vancouver, Wash., for 11 years. “I live in a nice house across the street from a park where everybody walks their dogs,” he said. It takes a lot of dedicated work to keep Alexander safely at home. He’s long estranged from his family, but he needs daily care because his legs don’t function well and are subject to frequent muscle spasms. “My legs are like noodles—they can’t support me,” he said. He even needs help using the TV remote because the buttons are too small for his weak grip.
Alexander has three caregivers. Five days a week one woman wakes him up around 8:30 and cleans him, feeds him, moves him from his bed to his wheelchair, and leaves at 10:30. The next caregiver comes in at 2 and stays until 7, helping him maintain his mobility and cognition by doing puzzles and physical therapy. The woman who owns the house, Vicki Bickford, fills in the rest as she can.
At first Bickford was able to provide the care herself, and she became Alexander’s health aide. But as he started to have trouble walking, Bickford found a young single mother, Lauren, who had been working low-paying retail jobs, to take over. At the time, Lauren was living with her three children in one room of her parents’ house. In Washington, wages for home health care aides are high enough that Lauren has been able to save up money to get her own apartment. “Her kids are fed, have clean clothes; she’s going to be buying a car soon,” Bickford said. Lauren has health insurance and access to training and education, which is building “her self-worth,” Bickford added.
All of this care is free to Alexander under Medicaid. “I’m very satisfied with the caregiving I’m getting,” he said. It’s still not enough—Bickford is pushing to get him care to cover more hours, particularly when he’s alone overnight, often having to sit in his own waste. Still, it looks far different here than in most other states, where the ability to get care at home is severely limited.
“Washington leads in everything,” Reinhard said. AARP has ranked the state number two in the country for providing long-term care supports, in part because over 60 percent of its Medicaid and state-funded long-term care funding goes to home-based care, compared with a national average of 45 percent. One of the state’s most important innovations is the way it treats home health care workers. “The state invested in home care in a very real way,” said Sterling Harders, president of SEIU 775. For two decades, home care workers have been organized through Harders’s union, and they’ve secured some of the best pay and benefits for such work in the country. The starting wage is now $16.72 an hour, Harders said, and the workers get raises every six months. They can obtain health insurance for $25 a month and have access to an employer-paid retirement program. They even get paid sick leave and mileage reimbursement for driving their own cars to work. Washington also offers “the most robust training program for caregivers in the country,” Harders said. Home care aides must complete 75 hours of basic training, akin to what certified nursing assistants receive, and most do another 12 hours a year to stay up-to-date on best practices or learn about the specific needs of their clients.
Because of these reforms, “home care is much more available,” Poo said, “especially in the rural communities.” It means that there are 23 home health and personal care aides for every 100 adults who need one—still not enough, but above the national average. It also means that caregivers are well trained and well compensated, offering clients more peace of mind.
Washington residents who need long-term care will soon experience the country’s first-ever social insurance program to help defray the cost. Eventually any state resident who pays into the system for 10 years—not only those on Medicaid—will be able to receive $100 a day, up to a lifetime cap of $36,500, if they need help with daily activities like eating or bathing. The money will cover everything from a home health care aide to the installation of a shower bar. But while residents will start paying in January 2022, the benefits won’t be made available for another three years after that. And the benefit is likely to increase the demand for home health care aides, necessitating more supply.
“We may be best in the nation, but it’s still not enough,” Harders noted. Even the higher wages are often not enough to live on, and health insurance is available only for workers and excludes their children.
If washington has made big investments in the supply of care, Hawaii has experimented with how to help people afford it. Iris Yafuso Toguchi realized something was wrong when she took her mother to the emergency room to get stitches and was told that she didn’t have health insurance. Her mother, who ran the family bakery, had been forgetting to make the payments for months. When Yafuso Toguchi checked her mother’s bank accounts, they were nearly empty: She’d spent it all on items advertised on late-night television. She was diagnosed with Alzheimer’s around 2015.
Caring for her is a challenge. “It’s like having an infant or a baby that’s 150 pounds,” Yafuso Toguchi said. “When you have a baby, you know this baby’s going to grow and become independent…. This, we’re going backwards.” She realized her mother needed nearly constant care to keep her safe.
The first time Yafuso Toguchi took her mother to an adult day care, where she could socialize with others her age under trained supervision, “it was like the first day when you take your child to kindergarten. They go off and they don’t say bye to you, and I cried in the car,” she recalled. But on the drive home it dawned on her: “I have peace of mind, I can rest, I can actually do something.” It’s helped her mother, too, keeping her mentally sharp and physically active.
At first, Yafuso Toguchi paid for the program out of pocket, depleting her savings. Then she saw an ad on TV for a state program that started at the end of 2017: Kupuna Caregivers. The word “kupuna” in Native Hawaiian means “senior” but also conveys a sense of respect and honor. The Kupuna Caregivers program gives people who care for family members $210 a week to cover paid caregiving so they can keep working. It’s “a first-in-the-nation model,” said Ian Ross, public policy and advocacy manager at the Alzheimer’s Association–Hawaii. Yafuso Toguchi enrolled. For about a year it paid for six days of adult day care a week. “It was a godsend,” she said. The program was established on the heels of the Kupuna Care program, which Hawaii began in 2012 to help elderly residents who aren’t on Medicaid pay for essential services they need to live at home. The two programs are about “respecting the tight-knit family and respect for elders that we have in Hawaii,” said Ross.
But they aren’t perfect. After the first year, because of high demand, Yafuso Toguchi’s coverage was reduced to three days of adult day care a week. Advocates had been rallying around increased funding for the Kupuna Caregivers program when the pandemic began and the legislative session was thrown into chaos. “Funding is a really big issue,” Ross said. Each year the legislature has to find money in the budget to keep it going.
The unpredictability of funding is indicative of the program’s incomplete nature. It was meant to be “a stepping stone to something more permanent,” Ross explained. It can’t and won’t reach everyone, nor does it cover the full cost of care. States like Hawaii and Washington, which are so far ahead in their approaches, have only scratched the surface.
Much could be accomplished simply by changing the way we approach caring for the aging and disabled: not as an individual crisis but as a collective obligation. That mindset is at the heart of some smaller-scale innovations that rely heavily on the idea of community.
In 1999, a group of elderly homeowners in the Beacon Hill section of Boston faced a conundrum: They wanted to stay in their homes, but they were too wealthy to receive Medicaid—and yet not wealthy enough to afford the services they needed. So they founded a “village”—a collective in which members pay dues (a few hundred dollars a year) and typically hire someone to oversee the services they need to stay in their homes, such as transportation, social programs, or help with housekeeping tasks. Some even hire a shared chef or a nurse. There are now about 300 such villages affiliated with the Village to Village Network across the country.
These villages can’t solve everything or include everyone. It takes 18 to 24 months and often significant resources to get new ones started. Members have to be mobile, and the villages don’t offer medical services. Barbara Sullivan, the executive director of the Village to Village Network, wants to see government resources help more of them start up and keep going. “If Medicare can reimburse, through the Advantage program, Uber and Lyft for [rides to] medical appointments, why can’t we get reimbursed?” she asked.
Someday people who need assistance might choose to live in something like Carehaus, a residence where the elderly and their caregivers live together. Artist and filmmaker Marisa Morán Jahn and architect Rafi Segal, who are launching the first Carehaus next year, started the project because of their personal experiences. Morán Jahn, the daughter of Chinese and Ecuadorian immigrants, has dealt with struggling to find care for her young son and also with worrying about her isolated grandmother. Segal’s father and grandparents grew up on a kibbutz in Israel. Combine those things and you get Carehaus. Older residents live in private rooms clustered around a large shared space, and each floor is dedicated to an activity or need: a kitchen, an art workshop, a fitness area. Caregivers, meanwhile, get an affordable place to live with their families and can share the work.
The details matter. There are no corridors, so it’s easier for older people to orient themselves. Each floor has a mural in a different color to help them find their way. The color changes as the wall meets the floor to help those who are visually impaired differentiate the two. It will also look “hip,” Segal said, to change the way we think about where the elderly live.
The first Carehaus will be a 20-unit building in central Baltimore housing 12 seniors and four caregivers and their families. Morán Jahn and Segal hope many more will follow. They’re already looking for new sites in Houston and Miami.
Elder care is “something that’s been really hard to get political momentum behind for as long as I can remember,” said Poo. But there’s a growing recognition that aging doesn’t have to be all about “decline and vulnerability and frailty”—warehousing the old in facilities until they die. “The thing we always forget is that aging is actually living.” With the right support, older Americans can continue to have full lives. “We think of children as an investment and older adults as not an investment,” Szanton pointed out. But “older adults have a lot to provide.”
The policies are slowly shifting accordingly. Thirty years ago, Reinhard said, states were spending resources almost exclusively on nursing home care. Now that is nearly evenly shared with home-based and community-based care. The Affordable Care Act included the CLASS Act, which would have established a national, voluntary social insurance program for long-term care. But without a mandate that Americans buy plans, it never became solvent and was shut down in 2011. During his 2020 run for president, Senator Bernie Sanders included long-term care coverage in his Medicare for All proposal, and it was also included in congressional legislation.
Then Joe Biden campaigned on a care package that included elder care, and as president he has proposed a $400 billion investment in home- and community-based care for seniors and the disabled in his American Jobs Plan. The pandemic revealed not just the shortcomings of our nursing homes—which turned into nightmares as sickness and death spread inside them—but also that care for our loved ones enables us to live full lives.
“Beforehand, if you didn’t have the ability to afford long-term care, you just thought of it as a personal failure,” Poo said. “Now we’re talking about what is our responsibility as a nation to support our collective ability to take care of the people that we love.”
Will is determined to try to get more care for his mother again—just someone to come to their home for a few hours a week. He plans to reapply to Medicare to cover the cost of an aide. But having been disappointed once, “it’s hard to even get my mind in the game,” he said. “We are hopeful. But I am expecting a long process with no promises.”