Norma Upshaw, 82, was living alone south of Nashville when her doctor told her to start home dialysis.
Her immediate family lived 40 miles away, and they had already had a falling out when the independent senior living facility she had called home — a community of mostly black residents — had closed on thirty days' notice. Here they were again looking for a residential facility or perhaps an affordable apartment that was closer.
They couldn't find them either, so Upshaw's daughter built a small apartment near her house.
“Most of her doctors, her church, everything was in Nashville,” said Danielle Cotton, Upshaw’s granddaughter, “… this was the best option for us.”
Nearly half of Americans over 65 will pay for some form of long-term health care, the landscape of which is rapidly changing from nursing homes to congregate living settings.
Black Americans are less likely to use assisted living communities, such as assisted living facilities, and are more likely to live in nursing homes, CNHI News and The Associated Press found as part of a study of America's long-term care options. The opposite is true for white Americans.
The disparity is well known to those who work in and research assisted living, and experts say the reasons for it are complicated. Where to place a parent or loved one is determined in part by personal and cultural preferences, as well as insurance coverage and the physical location of assisted living communities. All of these factors vary from state to state, family to family.
The result is that older Black Americans can be left out of living situations that can create community, prevent isolation, and provide assistance with daily tasks while still allowing a level of personal independence.
“The bottom line is that white people now have a solution — and that's these incredible assisted living communities — and minorities and low-income people don't,” said Jonathan Gruber, an economist at the Massachusetts Institute of Technology. “That is the fundamental challenge our country faces as our demographics change.”
The AP and CNHI News analyzed data from the most recent National Post-acute and Long-term Care Study, published in 2020, and found that Black people are underrepresented in assisted living communities nationally by nearly 50%.
Black Americans account for about 9% of those over 65 in the US. But they are underrepresented in assisted living communities at 4.9% of the population, and overrepresented in nursing homes – about 16% of residents.
The situation is reversed for white Americans, who make up 75% of Americans over 65 but make up 88% of people in assisted living communities. The AP-CNHI News analysis also found that other ethnic and racial groups are underrepresented in assisted living facilities, but that only Black Americans were also overrepresented in nursing homes.
In the absence of a universal definition for assisted living, the federal study created the category “residential community care” to represent facilities that serve people who cannot live independently but who also do not need the more extensive care provided in nursing homes.
In short, they are places where people can live and receive assistance with activities of daily living, such as washing, dressing and managing medications, but where nursing care is not provided 24 hours a day.
Financial barriers affect low-income people of all races, experts said, but they are even greater for older Black Americans. Black workers earn $878 weekly, compared to $1,085 earned by white workers, according to data from the U.S. Bureau of Labor Statistics, which shows this national gap has existed for decades.
That affects both the potential to spend on long-term care – and, earlier in life, home ownership. Many residents are selling their homes to finance elder care, and more than seven in 10 U.S. homeowners are white, according to 2020 U.S. Census Bureau data.
One month in an assisted living facility costs $4,500 per month or $54,000 per year, according to the national average cost from the National Center for Assisted Living, which represents assisted living providers.
Most people pay privately, often through personal funds or long-term care insurance; nursing homes may be covered by Medicaid. That makes assisted living out of reach for many Black Americans, explains Cotton, who also founded and runs a Nashville nonprofit that helps financially strapped seniors find housing.
She said many can barely afford government-subsidized housing, let alone expensive residential communities: “It leaves them in a hole. These are the seniors who are not actually even thought about.”
In Palo Alto, California, the nonprofit organization Lytton Gardens uses funding from the U.S. Department of Housing and Urban Development to subsidize housing costs for low-income residents. But the costs of care – scheduled meals, assistance with bathing and taking medications – are still borne by the individual.
Staff have tried to reach Black and Hispanic seniors through social workers, libraries and senior centers. But the residents are still predominantly white and Asian.
“I'm usually begging someone to move in,” said Donna Quick, housing manager for Lytton Gardens. “But it's just a matter of finding someone who has the money for this assisted living program.”
The process of paying for long-term care is “as opaque as it can be,” said Linda Couch, senior vice president of policy and advocacy at LeadingAge, which represents nonprofit long-term care providers and conducts long-term care research. “Because we don't have a comprehensive and coherent long-term care financing system in this country, we're left with this patchwork,” Couch said.
The top question from researchers as more assisted facilities open across the U.S.: Are they located near Black communities? – is also difficult to answer.
“The federal government doesn't even have a list of assisted living (facilities),” said Lindsey Smith, a health care system administration and policy researcher at Oregon Health and Science University-Portland State University School of Public Health. “For example, there is no registration. When COVID hit, they didn't have a list.”
LaShuan Bethea, executive director of the National Center for Assisted Living, said more research is needed to fully know whether fewer Black people accessing assisted living means they are missing out on needed care, or whether they are getting that support in other ways. find.
“It's really important to do the work … trying to understand: What does this mean when Black and brown people don't have access to assisted living, knowing what it delivers in terms of quality and outcomes?” Bethea said.
While affordability is a determining factor, researchers say it doesn't fully explain why more Black people aren't transitioning to assisted living.
“I think the other piece is the expectation that we want to keep people at home as long as possible,” said Candace Kemp of Georgia State University's Gerontology Institute. “And within families of color, particularly African American communities, there is a desire for care for family members.”
Steven Nash's father could afford the most expensive housing facilities, but the former judge wanted to stay home. So while Nash ran one of the country's last remaining nursing homes in the Washington DC area, he also helped care for his father until he died at age 87.
“Even though it was very difficult for the family, we kept that promise,” he said. “We do our best to honor the wishes of our elders.”
As smaller nursing homes and facilities that once cared for Black residents have closed, a cultural competency gap has emerged, Nash said. He pointed to the kitchen, where beloved cultural food options have been removed in favor of generic menu items.
“People want to live their lives the way they lived,” he said.
That's why Indiana's 95-year-old mother, Senator Gregory Porter, continues to live where she has for 60 years, cared for by Porter, other family members and home care professionals. Porter's daughter has promised to care for him in the same way as he grows older, a commitment that gave him “a level of comfort.”
“It means a lot,” Porter said. “It gives you the will to live.”
But for others, assisted living is an option for independence even as their daily needs increase.
According to the Alzheimer's Association, older black Americans are twice as likely to develop Alzheimer's disease or other forms of dementia than older white people. Nash said he has seen more Black Americans interested in assisted living for dementia care; in fact, he plans to open a targeted facility in the coming years.
In Texarkana, Texas, former attorney Jay Cossey moved to an assisted living facility more than seven years ago after suffering multiple strokes that caused him to lose most of his short-term memory. He is one of the few black residents of a facility located a few blocks from his old apartment.
His church community urged the 70-year-old to move in with them, although his family in Alabama insisted he come live with them.
“My brother came and said he wanted to take me home,” Cossey recalled. “I told him I'm home. I am at home because I feel good here.”
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Gerber reported from Kokomo, Indiana; Shastri reported from Milwaukee; and Forster reported from New York.
___ The share of the U.S. population over age 65 continues to rise — and will do so for decades. Because nearly half of Americans over 65 will pay for some version of long-term health care, CNHI News and The Associated Press examined the state of long-term care in the series The High Cost of Long-Term Care , which looked at day care for adults. to high-quality assisted living facilities, to understand the affordability, staffing, and equity challenges that exist today and lie ahead.
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The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute's Science and Educational Media Group and the Robert Wood Johnson Foundation.
