There was the home health attendant who sucked her thumb before touching household items. And the one who brought her unvaccinated 4-year-old into the apartment where Mary and her immunocompromised husband live, near Pittsburgh, Pennsylvania. And the one who came by after her day shift at a nursing home.
Many of the aides who circulated through Mary’s household were vaccine-hesitant or outright anti-vax; many wore their mask improperly while in the apartment, she told me. A few came in with sneezes, sniffles, and coughs that—as Mary and her husband learned only after asking—were symptoms of an active COVID-19 infection.
The couple worked with 34 home-care attendants in 2021—24 of them since last July. On the worst days, Mary told me, no one showed up. (The Atlantic agreed to identify her by only her first name, because she and her husband fear that finding assistance will become even harder if they speak publicly about their experience.)
Her husband, who has spinal muscular atrophy and uses a wheelchair, turns lights on and off with voice commands and can answer the phone and control the television with a smart device. But he relies on attendants for assistance with eating, toothbrushing, showering, cleaning, and other household tasks. At night, getting out of his wheelchair and comfortably into bed can take 45 minutes. It’s arduous work, and “I’m in trouble if we can’t get someone,” said Mary, whose osteoporosis means that she can’t do physically demanding caregiving without assistance of her own.
When aides show up but misuse masks or have eschewed a vaccine, that necessary care becomes a threat. Managing a “parade” of home health attendants during the pandemic, Mary said, has been “absolutely, totally nerve-racking.”
Any relationship between home-care workers and their clients modulates on a frequency of unavoidable intimacy. “That might be the only person they see that day,” says Nicole Jorwic, the chief of advocacy and campaigns for Caring Across Generations, an organization aimed at reforming home and community-based care and supporting those who receive care, their families, and caregivers. Some 2 million to 4.6 million direct-care workers support millions more older adults and people with disabilities or chronic conditions in the shelter of their home. “This is life-giving work,” Jorwic told me. Because of the physical proximity demanded by this labor, it also unavoidably poses a risk to those receiving it.
Balancing the need for care and the stress of dependence on people who might infect you with COVID-19 is just one more way the pandemic is concentrating risk among the most vulnerable, and even more so the longer it goes on. “As a society, we’re craving a return to quote-unquote ‘normalcy,’” Jorwic said. “That return to normal is a return to not recognizing the value of the lives of people with disabilities and the elderly.”
In one important way, the risk of home health care continues to be unnecessarily high: Direct-care workers tend to be unsure about the COVID-19 vaccines. When they first became available, some struggled to gain access. By the spring of 2021, just one-quarter of direct-care workers had been vaccinated, compared with about two-thirds of hospital workers and half of nursing-home workers, according to a poll conducted by the nonprofit Kaiser Family Foundation and The Washington Post. By August, uptake within different caregiver companies and subspecialties ranged from 40 to 90 percent, the National Association for Home Care & Hospice estimated.
At least two industry groups—the NAHC and the Home Care Association of America—have publicly voiced support for the COVID vaccines. At the same time, surveys have documented low confidence in the vaccines among direct-care workers. “We need to be honest and recognize our shortfall in vaccinations as an industry,” the NAHC’s president and CEO said over the summer. Direct-care workers are not fully convinced that the vaccines are safe or effective; many worry that the vaccines have not been adequately tested in people of color. About 61 percent of direct-care workers are people of color, and in this way these slower rates of uptake reflect broader trends in the United States.
How many direct-care workers are currently vaccinated is unclear. Vaccination rates are especially unknowable among the sizable number of direct-care workers in the unregulated, private-hire “gray market,” which is very difficult to measure. Today, an NAHC spokesperson told me, the range might be closer to 50 to 98 percent, depending on the company and whether workers are subject to a mandate. By comparison, by the end of 2021, at least 77 percent of hospital workers were fully vaccinated, and by now almost 85 percent of nursing-home workers are.
Many disability-rights activists told me that they are keenly invested in the many labor issues facing direct-care workers. Long before COVID, these workers were undercompensated and overworked. Almost half live in or near poverty, bringing in a median hourly wage of $13.56. More than a quarter are immigrants. One out of six lacks any health insurance. Two years before the pandemic, the field’s turnover rate peaked at 82 percent; turnover slowed in 2020.
At the same time, for the elderly and people with disabilities—communities that are vulnerable to COVID and deeply dependent on this precarious and neglected workforce—vaccine hesitancy adds yet another variable to the complicated equation for safely receiving care at home.
Navigating the tension between risk and care can create “a palpable feeling of dread,” says Judy Mark, the president of the California group Disability Voices United whose 25-year-old son has autism and relies on home aides. Too often, this dilemma boils down to a lose-lose choice between inviting an unvaccinated aide into the household or facing a reality without help.
Many in this position have made outsize sacrifices to minimize COVID risks. Jennifer Restle, who is blind and has a chronic illness, spent the first three months of the pandemic entirely alone in her house. “Not one person crossed my threshold,” she told me. From day one, she was on the same page about minimizing exposure to the coronavirus with the direct-care worker she’s employed since 2006. The aide, herself a cancer survivor with a suppressed immune system, monitored Instacart orders for Restle, dropped off goods on her porch, sorted her mail, and placed Post-it Notes on the signature line of checks for her. The two painstakingly reviewed grocery lists over the phone. Even now that both are vaccinated, the aide still wears a mask in Restle’s house. “I am extremely lucky,” Restle told me. “We’re more, like, in this together.”
Others, such as Tim Jin, can’t receive the assistance they need from six feet away. Jin, who has cerebral palsy, uses a wheelchair and communicates by typing on an iPad with his toes. His health aides assist him with cooking, eating, toothbrushing, using the bathroom, and going to the gym and doctor appointments. For the first six months of the pandemic, Jin saw no one in person other than those caregivers.
He used to employ his aides through an agency that sent a mix of people across three to four daily shifts. Even after he asked for vaccinated attendants, he told me, the agency still sent him unvaccinated staff. “At each shift, they were risking my life,” Jin said. “It was like picking a random number on a roulette wheel and hopefully I wouldn’t get exposed.” Jin now hires and manages his own staff—all of whom have been vaccinated, and half of whom are boosted.
For many direct-care clients and their families, private employment may be the best way to assure that caregivers are vaccinated—even if it costs more in time and resources.
Syra Madad, an infectious-disease epidemiologist at Harvard’s Belfer Center for Science and International Affairs, and her husband employ a half-dozen home health aides to take care of high-risk, elderly family members. To retain those direct-care workers during the pandemic, Madad told me, they offered hazard pay and provided personal protective equipment. “We knew if they left, we wouldn’t have anybody to help us,” she said. Not only was Madad able to keep her staff; she was also able to help them get vaccinated.
Outside of such private, unregulated arrangements, the requirements that direct-care aides be vaccinated aren’t totally clear. November’s federal vaccine mandate through the Centers for Medicare and Medicaid Services—which was upheld by the Supreme Court last month—clearly covers Medicare-certified home health agencies, but not necessarily Medicaid providers of home-based services (whose availability and funding vary greatly from state to state). And because 90 percent of direct-care workers are employed by small agencies, federal rules requiring vaccination or regular testing at companies with 100 or more employees—which the Supreme Court sent back to the lower courts on the same day—will also not broadly apply to the industry.
For Mary in Pennsylvania, those gaps parallel her chronic stress about getting through each day. She wonders every morning not only whether the aide scheduled to help her and her husband will show up—but whether that person will be willing to take precautions to protect the couple in their own home. “Sometimes I just cry thinking about it,” Mary said. “There are times where we look at each other and say, ‘Is this really all there is?’”
Almost everyone I spoke with for this story told me that the pandemic’s earliest months offered a bittersweet hope that COVID might open more people’s eyes to the challenges people living with disabilities face, through firsthand experience. Shelter-in-place orders created a situation in which disability was simulated at large, Kathleen Bogart, an associate psychology professor at Oregon State University and the director of the school’s Disability and Social Interaction Lab, told me. Millions discovered what it meant to spend the majority of their time at home, require flexible work options, contract outside help with daily tasks, and receive virtual health care. “I shared, along with many other people with disability, the hope that this time may increase awareness,” Scott Landes, a Syracuse University associate sociology professor, told me. “It seemed like for a while we were in this together.”
That moment has passed. Since 2020, Landes and his colleagues have studied how the risks, sacrifices, and tolls of the pandemic have been concentrated among some of the groups most likely to need in-home help. Early on, for example, many people with disabilities or rare disorders were cut off from regular care—monthly infusions, physical therapy for pain management, visits to the podiatrist to avoid overgrown toenails and other painful conditions. In periods of rationing COVID tests and PPE, home-care settings were often overlooked in favor of hospitals and nursing homes. In one study of almost 65 million patients, people with intellectual disabilities were more likely to die from COVID than people with congestive heart failure, kidney disease, or lung disease. Another study of nearly half a million people with positive COVID cases found that those with intellectual disabilities or developmental disorders were, respectively, 2.75 and three times as likely as others in their age group to die following their diagnosis. (Additional evidence shows that this disparity is even more pronounced in residential group homes.) About three out of four total COVID deaths in the U.S.—more than 650,000—have been people 65 and older. “It has underscored the fact that the system is broken,” Landes said.
All the while, those populations have been largely hidden. Some of the most vulnerable among us have remained in lockdown, sheltering in place and out of sight.
“Our value is not seen, so our experience is not considered important,” Restle said. “We were everybody’s afterthought because we could be left in our houses.”
Bogart has been documenting the mental-health toll of that intense and prolonged social isolation. After surveying 441 U.S. adults with disabilities last winter, Bogart and her colleagues found that 61 percent of respondents met the criteria for a probable diagnosis of major depression. Fully half met the criteria for generalized anxiety disorder.
People with disabilities or rare disorders also have had little way of knowing what danger their conditions might add to the baseline risks of COVID. Bogart, for example, has Moebius syndrome, a congenital facial weakness or paralysis condition that can prevent some from closing their eyes or mouth, leaving those mucus membranes exposed. “No one knew whether we were more susceptible to catching COVID-19,” Bogart said. Even two years in, “these groups are still left in the dark. In this omission is an implicit We don’t care about those people,” she said. The National Council on Disability echoed that sentiment in an October report, saying that for people with disabilities, “COVID-19 was not only a healthcare crisis but an extended test of the nation’s recognition of their human and civil rights.”
Even if the risk of COVID disappeared tomorrow, the pandemic would have left home-care clients in a more vulnerable position—and added to their numbers. In 2019, 41 states had waiting lists for home and community-based health services—a nationwide total of about 820,000 people enduring an average wait of 39 months. “That was before the pandemic,” Caring Across Generations’ Jorwic said. “That number has certainly gone up.” Given what we know about long COVID, Bogart said, the pandemic could represent “a mass disabling event.” Already, at least 26 percent of U.S. adults have a disability, and she and others say we are neglecting their needs by neglecting the home-care industry. “I am very worried, looking forward. What does this mean for all of us down the line?” Madad, the epidemiologist, said. “There’s going to be a huge demand for it, and we’re not doing enough.”