'I’m beyond terrified': For home care workers, COVID-19 is a health crisis and an economic one

Shefali Luthra, The 19th
·8 min read

When COVID-19 came to New Orleans, Nicole Alston felt the impact immediately.

Alston, 45, is a home care worker who helped clients – often older people or those with disabilities – eat, bathe and get dressed.

As her family’s breadwinner, Alston earns $8.50 per hour. The money’s barely enough. She and her husband are both diabetic. Her 19-year-old daughter, also diabetic, and 16-year-old nephew live at home with her. On weekdays, she takes care of three of her grandchildren.

Before the pandemic, Alston, who works through a home care company, saw five clients regularly and worked 40 hours a week. Now, the only client she cares for is her husband, who is vision-impaired. He has coverage through Medicaid, so the company she works for charges his plan, then pays her.

Her employer asked her to take on another client. Though she could use the money, she declined. Because of her family’s medical history – one of her grandchildren also has a heart condition – Alston is terrified of contracting the virus.

“I don’t feel safe going into somebody’s house. We’re so sick already, so I don’t feel good about it at all,” Alston said.

Alston pockets wages for 10 hours of work each week. That’s $85 per week, or $340 per month.

“What do you do? You’ve got to risk your life working or risk your life not working and having the lack of your basic needs, which is food, water, what have you,” she said. “It’s basically damned if you do, damned if you don’t.”

Coronavirus relief legislation only provides temporary financial relief.
Coronavirus relief legislation only provides temporary financial relief.

COVID-19 has had a disproportionate impact on home care workers. It’s a workforce that is 87% women, and a majority are Black or Latina. About a quarter are immigrants. Some work for small companies, and some work on the less regulated “gray market,” where employers pay them directly out of pocket and don’t necessarily require the same level of licensing. Even before the pandemic, home care workers received fewer protections and had higher rates of poverty, even though experts predict the need for home care workers will skyrocket in the coming decade.

The rapidly aging population – by 2030, the U.S. Census projects, older Americans will outnumber kids for the first time – has made home care one of the nation’s fastest-growing employment sectors, with about 4.5 million jobs. On average, workers earn about $12 an hour and are more likely to rely on public assistance programs to make ends meet. Researchers say those inequities stem back to the Jim Crow era, citing interwoven, entrenched sexism and racism that have kept wages lower and exempted workers from many protections such as guaranteed overtime pay.

During the pandemic, home care providers are required to do “essential” work with little support or protection. Either they provide care to vulnerable patients, often with limited personal protective equipment, or they forgo work and income in an effort to avoid the virus.

“It’s a story of a vulnerable workforce caring for a vulnerable population, and what happens in COVID,” said Dr. Madeline Sterling, an assistant professor at Weill Cornell Medical College, and one of the few researchers to study how COVID-19 has affected home care workers. “There needs to be policy changes that better serve them.”

There’s no official data tracking how often home care workers have been diagnosed with the virus or how many have lost work because of COVID-19. The little qualitative research that exists suggests a high risk of infection and little institutional support or protection for vulnerable workers.

Between the economic strain and risk of infection, home care workers could also face a mental health burden. Women are at greater risk of anxiety and depression, a trend exacerbated by the pandemic, hitting Black and Latina women especially hard. There’s also no data tracking incidence of either psychological condition among home care workers.

“There’s a crisis going on in home care. We just don’t see it,” said Kezia Scales, director of policy research at PHI, a New York-based advocacy group that studies home care workers.

The home care workforce hasn’t emerged as a major talking point for either presidential campaign, though former Vice President Joe Biden, the Democratic nominee, outlined a strategy for enhancing home care worker protections. This includes higher pay and paid sick leave, as well as endorsing the “Domestic Worker Bill of Rights,” legislation put forth by his running mate, California Sen. Kamala Harris, which would guarantee overtime pay and protection from workplace harassment. President Donald Trump – whose administration has sparred with home care workers’ unions – has been silent on the issue, and the Department of Health and Human Services didn’t respond to inquiries about whether it plans any policies or initiatives to address home care workers’ needs.

For workers, the crisis is emerging in two forms. There are women such as Alston, who are afraid to work because of the risk of exposure and don’t have substantial savings to fall back on.

Others work because they must. They need the money, or their clients – who, because of American aging demographics, are more often women – are medically compromised. If they don’t take care of them, it’s unclear who will.

Policies and benefits to protect home care workers “would by association help older women,” said Melinda Abrams, a senior vice president at the New York-based Commonwealth Fund, a health care foundation and research organization. Many don’t have family nearby to care for them, or they require full-time care that relatives aren’t able to give.

“I realized, if I didn’t do it, nobody was going to be there to help them day to day. They depend on us,” said Adara Benjamin, 26, a home care worker in Chicago who cares for three clients. “If I wasn’t here, who would cook? How is she going to eat?”

Even before COVID-19 hit, home care workers had limited on-the-job protections. Paid sick leave isn’t guaranteed, and health care employers – a category that includes home care companies – were exempted from the federal Families First Act’s mandate to provide employees with paid time off if they fell ill. About a quarter of home care workers don’t have health insurance, according to data from 2016, the most recent year for which figures are available. More than a third rely on Medicaid or Medicare for their coverage.

Home care workers fall lower on the federal priority list for high-end PPE, such as the N95 masks that lower the risk of contracting COVID-19. Some receive gloves and masks from their employers or from the state or county, but there’s no uniform policy or standard. Among those who get PPE, many say it’s nowhere near enough. Employers, who have thin profit margins, aren’t reimbursed for PPE they purchase for employees.

Benjamin makes about $14 an hour, and most of that, she said, goes toward buying protective gear. It’s expensive, but she said she has no choice. Her employers give her only one mask per client every two weeks and a pair of gloves every two weeks, she said. Sometimes, she needs multiple pairs of gloves in one day.

Benjamin lives with her 49-year-old mother, who works from home and has diabetes and high cholesterol.

“I’m beyond terrified. Petrified. I have no idea – what would I do if at any point in time I contract it?” she said.

Benjamin is better off than many of her peers: She has health insurance through her union. Workers who are nonunionized, or who work though the less regulated home care “gray market,” often don’t even have that.

Lydia Nakiberu, 41, a worker in Massachusetts, is undocumented. She works in home care, though the pandemic means her work has dipped – from 40 hours a week to 12. Her husband, applying for asylum, works in a nursing home. Some of her clients pay her minimum wage, which is $12 per hour in Massachusetts; others pay less. Neither Nakiberu nor her husband has health insurance.

When he contracted COVID-19 this year, she cared for him with “home remedies” such as Vitamin C and hot water, she said. She knows doing what little work she has – she takes the bus to care for one client on weekends – exposes her, too. She puts whatever money she can toward buying extra protective gear.

“I can’t afford getting sick, because I don’t have health insurance,” Nakiberu said. “I can afford the masks more than I can afford going to the hospital.”

Beyond protective gear, health insurance and sick leave, other inequities further heighten the risk for home care workers, Sterling said. In general, they are much more likely to rely on public transportation, which increases the risk of infection. The pandemic means older clients are more likely to need to stay home. Workers run errands that take them out of the house and into crowded, indoor spaces – pharmacies and grocery stores, for instance – adding another layer of risk.

Many home care workers don’t get formal training on COVID-19, meaning they’re on their own in deciphering what risk they face and how to navigate it.

All of those problems remain unaddressed, Sterling said, and if the pandemic worsens this fall, as expected, they’ll take on heightened significance – even if the absence of federal or state data makes it impossible to track how bad things get.

“These are folks who provide personal care, medical care, emotional support,” Sterling said. “Despite being integral, they are often left out of the conversation. A lot of what they do is unrecognized.”

This story was published in partnership with The 19th, a nonprofit, nonpartisan newsroom reporting on gender, politics and policy.

This article originally appeared on USA TODAY: For home care workers, COVID-19 is a health crisis and an economic one