Norma Upshaw was living alone south of Nashville when her doctor told her she needed to start dialysis at home.
Her closest family lived 40 miles away and had already fallen out once, when the independent living facility the 82-year-old called home — a community of predominantly black residents — closed on 30 days’ notice. Here they were looking, once again, for a retirement home or perhaps an affordable apartment that was closer.
They couldn’t find it either, so Upshaw’s daughter built a small apartment in her house.
“Most of their doctors, their church, everything was within Nashville,” said Danielle Cotton, Upshaw’s granddaughter, “…this was the best option for us.”
Nearly half of Americans over age 65 will pay for some version of long-term health care, the landscape of which is rapidly transitioning from nursing homes to community living situations.
Black Americans are less likely to use residential care communities, such as assisted living facilities, and more likely to live in nursing homes, CNHI News and The Associated Press found as part of an examination of long-term care options. term in America. The opposite is true for white people.
Experts say the reasons are complicated and varied: personal and cultural preferences, physical location of residential care communities, and insurance coverage. But the result is that older Black Americans may be left out of living situations that can create community, prevent isolation, and provide help with daily tasks.
“The bottom line is white, the wealthiest people have a solution now — which is these amazing 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 facing our country as our demographics are changing.”
The AP and CNHI News analyzed data from the most recent 2020 National Study of Post-Acute and Long-Term Care and found that Black people are underrepresented in residential care communities across the country by nearly 50%.
Black Americans make up about 9% of people over 65 in the US. But they are underrepresented in residential care communities, representing 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 represent 88% of people in residential care communities. The AP-CNHI News analysis also found that other ethnic and racial groups are underrepresented in assisted living facilities, but only Black Americans were also overrepresented in nursing homes.
Lacking a universal definition for assisted living, the federal study created the category “residential community care” to represent settings that serve people who cannot live independently but who also do not require the more comprehensive care provided in nursing homes.
Financial barriers affect low-income people of all races, experts say, but are compounded 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 disparity has existed for decades.
This affects both potential spending on long-term care – and, earlier in life, homeownership rates. Many residents sell their homes to finance elder care, and more than 7 in 10 homeowners in the U.S. are white, according to 2020 U.S. Census Bureau data.
A month in an assisted living facility costs $4,500 per month or $54,000 per year, according to a 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. This puts assisted living out of reach for many Black Americans, explained Cotton, who also founded and runs a nonprofit in Nashville that helps financially struggling seniors find housing.
She said many can barely afford government-subsidized housing, let alone expensive housing communities: “It leaves them in a hole. These are the elderly people who really aren’t even considered or thought about.”
The long-term care payment process is “as opaque as it gets,” said Linda Couch, senior vice president of policy and advocacy at LeadingAge, which represents nonprofit long-term care providers and researches long-term care.
And researchers’ main question as more assisted living facilities open across the U.S. – are they located near communities of color? – is also difficult to answer.
“The federal government doesn’t even have a list of assisted living (facilities),” said Lindsey Smith, a health systems management and policy researcher at the School of Public Health at Oregon Health and Science University-Portland State University. “There’s, like, no record.”
While affordability is a clear determinant of who can and cannot access assisted living, researchers say it doesn’t fully explain why more Black people aren’t moving.
Steven Nash’s father could afford the more expensive assisted living facilities, but the former judge wanted to stay at home. So while Nash ran one of the country’s last black-owned nursing homes in the Washington, D.C. area, he also helped care for his father until his death at age 87.
“Even though it was very difficult for the family, we still kept that promise,” he said. “We try our best to honor the wishes of our elders.”
But for others, assisted living is an option for independence, even as their daily needs increase.
Older Black Americans are twice as likely to have Alzheimer’s or other dementias compared to older white people, according to the Alzheimer’s Association.
In Texarkana, Texas, former lawyer Jay Cossey moved into a nursing home after several strokes more than seven years ago caused him to lose most of his short-term memory. He is one of the few black residents at a facility that is a few blocks from his old apartment.
His church community encouraged the 70-year-old to move, even though his family in Alabama pushed for him to move in with them.
“My brother came and said he wanted to take me home,” Cossey recalls. “I told him I’m home. I’m 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 continue to rise in the coming decades. Because nearly half of Americans over age 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 High Cost of Long-Term Care series, looking at child care facilities for adults. for high-quality assisted living facilities, to understand the accessibility, 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 Science and Educational Media Group and the Robert Wood Johnson Foundation.
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