Stuck in place: How older adults end up trapped inside their own homes
by Anne Marshall-Chalmers.
(Pictured above: Betty Gray in the Berkeley apartment where she had been confined since taking a bad fall in February. Katie Rodriguez/ UC Berkeley Investigative Reporting Program)
This story was originally published in The San Francisco Chronicle on September 24, 2022.
Seven months ago, Betty Gray could climb the 11 inside steps leading to her Berkeley apartment, though it would take her about 15 minutes. In her 70s and suffering from chronic pain and congenital arthritis, she’d park her wheelchair at the bottom of the stairs and then scoot backward up each step. At the top, she’d pause before grasping the rail “for dear life” as she pulled herself to her feet.
But one day in February, Gray’s legs quivered like Jell-O as she stood at the top of the stairs. She remembers stumbling backward, rolling down all 11 steps and the sound of her head smacking the concrete floor at the bottom. Paramedics arrived, but Gray refused a ride to the hospital — she didn’t want to have to face those stairs once she was discharged. They helped her into her apartment and that’s where she remained.
Gray spent her days in a cushioned chair by the front door, watching old Westerns while stringing beads for bracelets or creating decoupage prayer boxes. Her fall resulted in nerve damage to her hands and feet, and she developed an intense fear of the 11 steps that separated her from the rest of the world.
Like many people, Gray does not want to go to a nursing home. “When you put old people where they don’t want to be,” she said, “they die.” But her low income and need for an accessible living unit severely limited Gray’s choices. Even with a Section 8 housing voucher to help, she struggled to find adequate quarters, leaving her stuck in a place that wasn’t a good fit — physically or mentally.
Gray is like many older people who feel lost in a disjointed labyrinth of services. And as a Black woman, she may be especially vulnerable to being placed in institutional care and suffering as a result. Some data indicates that older Americans of color wind up in nursing homes at a higher rate than their white counterparts. And a large body of research shows that Black residents in nursing facilities are more often physically restrained and more likely to suffer from pressure ulcers.
Though assistance is available to help low-income older adults remain in their own homes, many are unaware of such programs or how to access them, says Denny Chan, directing attorney with the policy and advocacy organization Justice in Aging. The result is that many who choose not to move into institutionalized settings end up effectively as shut-ins like Gray, unable to go outside and dependent on friends and relatives for help.
“Our system of supports and services that allows older adults to age in their community is broken and racialized,” Chan said. “The inadequate access to home- and community-based services and the racialized rental housing burden work together to hurt many older adults of color trying to stay in their homes and communities.” A recent report from Justice in Aging and the National Low-Income Housing Coalition shows older Black and Latinx households are not only more likely to be renters, they’re also more likely to be low-income renters paying more than 30% of their income on housing amid a dearth of affordable and accessible units.
Perhaps nowhere is the affordable housing crunch more acute than in Gray’s home state of California, where there are about 23 available affordable units for every 100 eligible older renters who need one.
Chan believes this disparity reflects a lack of support for elders of color who don’t have the means to grow older safely in their homes. “I think for many adults it can really feel like an impossible set of circumstances,” he said.
“Help our neighbor”
A single mother of six children, two of whom she has outlived, Gray moved from Chicago to California 40 years ago because she heard the schools and health care services would be better for her son Jason, who had a developmental disability. She owns a small bath and gift shop in Berkeley that has been closed since her fall. Her neighbors posted flyers in the community with a picture of Gray smiling, a cane in each hand, and the words “Help our Neighbor!” in purple above it.
A Baptist church with eight low-income apartments for rent heard about Gray’s situation and reached out, suggesting she enter a lottery for one. Gray did, hopeful that her months of confinement might soon end.
Deeply spiritual, with a megawatt smile and sharp wit, Gray, 73, never wavered in her belief that this “conjuncture,” as she called it, would improve. “Your attitude determines your attitude,” is a favorite mantra.
But for months, she was confined to her snug apartment. To get to the bathroom and kitchen, she would sit on a rolling stool while carrying a grocery bag that she filled with whatever she might need once back in her chair — water, tea, snacks, tissues.
When Gray first visited the apartment seven years ago, she wasn’t too concerned about those 11 stairs, mostly because she was desperate. Her former landlord had lost her house in a foreclosure, leaving Gray and Jason to couch-surf for about six months. When Gray saw the sunlight that poured into the kitchen and living room, she thought it would be a good place for Jason, who had leukemia.
He died in the apartment in 2017, at age 47. Another son looks in on her now, buying her groceries and often staying the night. But for months Gray longed to be outside again, in her shop and with her family. This spring, she was cooped up in her apartment when her son got married and a grandchild graduated high school.
Gray searched for a landlord who would accept her Section 8 voucher with no luck. According to the Joint Center for Housing Studies at Harvard, only about 4% of the nation’s housing units are equipped for people with moderate mobility difficulties.
Linda Couch, vice president of Housing Policy for LeadingAge, a Washington, D.C.-based association of nonprofit providers of aging services, says the U.S. Department of Housing and Urban Development’s Supportive Housing for the Elderly program could greatly improve the plight of low-income and disabled older people if it were better funded.
Known as Section 202, the program creates affordable housing projects that come with on-site coordinators who help residents figure out what home health services and community programs they qualify for and whatever else they may need. The federal government did not invest in any 202 units between 2010 and 2017 nationwide, and funding since then has mostly gone to maintain existing projects.
This year, the Biden administration is slated to spend more than $320 million on new section 202 housing, but there’s no guarantee any of that money will be allocated to Bay Area nonprofits.
“We celebrate that but we have a long way to go,” Couch said. “It’s the most money the 202 program would get in 15 years, but it’s 3,500 units.”
Not prepared to age at home
Aging in place can be difficult, even for people with moderate incomes. Many cities and nonprofits offer assistance for home modifications such as wheelchair ramps or shower bars to prevent falls, but often people don’t know such help exists or how to tap it. Some Medicare Advantage plans also offer coverage for home improvements, but programs vary state to state.
And assistance won’t always cover the full cost of what could be expensive renovations. A ramp alone can cost up to $10,000.
Seniors also struggle to access home-health aides and other services that help them remain safely at home, says Mollie Gurian, vice president for home and community-based policy for LeadingAge. “You either have to be poor enough to be on Medicaid or you have to be rich enough to pay for it,” she said.
Despite the hurdles facing Americans who want to age in place, a recent survey from the University of Michigan’s Institute for Healthcare Policy and Innovation showed nearly half of those over 50 haven’t taken steps to plan ahead.
“One of the challenges we see is that people have inadequate savings for a variety of reasons to support their aging and housing,” said Dr. Thomas Cudjoe, a gerontologist at Johns Hopkins.
For low-income elders, particularly those of color, systemic racism has made it difficult to accumulate wealth. Couch says the average renter retires with $1,500 in savings, while the lowest-income homeowner will hold about $100,000 in net wealth.
Couch notes there are successful programs helping to keep elders at home, for instance the Program for All-Inclusive Care for the Elderly, a Medicare- and Medicaid-funded service that matches people with home care, transportation and adult day primary care.
But PACE and similar programs often aren’t open to all older people and remain small in size.
Advocates had hoped Congress would include $150 billion in Biden’s infrastructure bill for home- and community-based services. But the recently passed Inflation Reduction Act did not contain that funding.
Chan, the attorney with Justice in Aging, believes policy isn’t keeping up with the barriers that low-income seniors in substandard housing face.
For example, he pointed to an instance last fall when the elevators stopped working in a 16-story senior housing complex in Los Angeles’s Chinatown. While some residents could manage the stairs, according to the Los Angeles Times, many elders who used walkers or wheelchairs were essentially trapped for weeks.
Betty Gray never did shake the fear of the 11 steps outside her door, but fortunately she no longer needs to worry about them. In late July, the Baptist Church called to say her name had been drawn for a first-floor-accessible apartment, and that it would accept her Section 8 voucher.
When she got the news, she was relieved but also a little disheartened after feeling ignored by so many government agencies and nonprofits that exist to help vulnerable people like her.
“We had to get proactive,” she said, after signing some paperwork for her new apartment. It was her neighbors and a flyer that helped to finally set her free.
“I’ve had so much joy because I’m leaving this nightmare,” she said, tears in her eyes. “This has not been an easy ride.”
Anne Marshall-Chalmers is a writer with the Investigative Reporting Program at the UC Berkeley Graduate School of Journalism. She reported this story through a grant from the SCAN Foundation. Photographer Katie Rodriguez also received a grant from The Scan Foundation.