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It is estimated that over 5 million people in this country receive paid home care services, which includes disabled people, older adults, and now those with COVID-19—individuals dealing with the long-term after effects and currently sick with the virus. Paid home care services are an important lifeline in our healthcare system; they allow people in our communities who need care to be in their homes rather than placed in institutions like nursing facilities. Statistically and holistically, people fare better if they are able to receive support in their homes, in environments that are familiar and comfortable, and not sterile and cold.  

As each day passes, home care workers and their clients are saddled with unthinkable choices and risks. These are the people closest to the issue that need to be heard and supported; by the agencies they work for, the communities they live in, and society who has a responsibility to do its part to slow down transmission. If and how we view the circumstances of these groups will determine how our society proceeds forward whenever the “back to normal” we dream of becomes reality.

Like many pockets of our healthcare industry, home care has been forced to shift its processes to keep up with the demands of the pandemic, and the effects on both clients and the largely women of color workforce of home care workers have been significant. Home care workers, 90% of whom are women, largely come from populations that are disproportionately impacted by the novel virus; with approximately 60% belonging to racial and ethnic groups that have been hit hardest by COVID-19. They are also vulnerable when it comes to earning a living wage and having healthcare benefits, as the overwhelming majority have not completed college, which drives down wages, one in five lack health insurance, and only one-third of workers are employed full-time. The median wage is $12 an hour, and the median age of a worker is 49 years old. 

Home care workers can provide a wide array of services to those on their caseload, with interactions being intimate due to the physical contact that may be essential in giving care. Due to this, safety protocols should not be disregarded, and yet there are concerns as to how well supported these workers are by the agencies they work for and what risks they may find themselves facing in the absence of necessary precautions. 

With a field that is gendered, middle age, earning just a few dollars above the minimum wage, and may not have health coverage, workers may find themselves in predicaments where hard decisions could present themselves that may impact not only their ability to fulfill the roles they have, but put themselves and their clients at risk. Many of these workers visit and care for multiple clients, which could mean that they are traveling to different houses in their roles. This level of varied engagement puts them at risk of possibly being exposed to the virus if their client or someone who resides in the home is infected. Conversely, clients are at an increased risk of being exposed to the virus due to the worker’s caseload demand in traveling between different homes.  

The Center for Disease Control (CDC) has developed a set of guidelines for direct service providers (DSPs), which includes home care workers, as to how to keep themselves and their clients safe from COVID-19. The guidelines outline sanitizing protocols, importance of practicing social distancing and mask wearing, and how to engage if they or a client contracts the novel virus. There is also information provided as to how workers can handle the stress of COVID-19, which is a reality for workers who may be worried about risk of exposure and job security if they contract it.  

The public might assume that protecting the health and well-being of workers would be high priority, but this can fluctuate based on agency and demand of workers. With the rising demands for home care workers plus the high contraction risk of the virus, these factors present a limit in the number of workers who are willing to take such risks if they are not supported efficiently by the agencies they serve. If workers are rightfully hesitant in continuing to work their jobs because of their concerns, then what could this mean for the people they care for?  

Andraéa LaVant, president of LaVant Consulting, Inc., a disability-focused strategy and communications firm, has been utilizing home care services for almost 20 years since she left home for college. The care LaVant receives revolves around her work schedule, and it is important for her to retain workers who can accommodate her active social and work lifestyle as a disabled woman.  

In this time frame, she has witnessed the support, and lack thereof, workers are given by their agencies in caring for clients. If a worker became sick pre-pandemic, their agencies would try to find a replacement. Pre-pandemic, if the worker had a cold and felt confident that they could still give care, LaVant had a personal supply of masks for them to wear at her own discretion.  

However, with the pandemic, her concerns about workers becoming sick or getting her sick has increased. Though she trusts her workers, her feelings lean more in this vein: 

“I think my main thing is that, specifically those that have multiple clients, and because the rest of the world seems to be moving on with life, like, unless they’re quarantining, still, which is rare,” LaVant said. “It’s just my concern more that they won’t know that they’ve been exposed and will be a carrier to get it, you know, because my immune system is compromised. I could get it and then not even know.”  

In discussing agency’s preparedness in encountering workers who become ill and have to stop working, LaVant gave a resounding “heck no, no” to the ill-preparedness of agencies.

“For my case, it’s hard to cover [retain a replacement worker] on a regular day,” she said. LaVant’s lack of faith of workers being protected is exacerbated by the lack of healthcare coverage: “It’s not like they have insurance to cover the costs [of COVID-19 testing].”  

LaVant represents the realities of many who utilizes home care support in our country, particularly disabled women of color. She is a Black disabled woman whose workers are majority people of color, and she’s well aware of the hard decisions she and them are exposed to.  

“Most of my caregivers are people of color or low income, or one way or another. That means that you’re having to accept or do the things that put you at risk of COVID-19,” LaVant said. “These jobs pay like crap, and that’s why turnover is as high as it is. There’s just a lack of respect. When I’ve talked to caregivers that I’ve had over the years, they’re just not valued in the way they should be.”  

Many of the discussions surrounding home care workers tend to not dive into the intersectional waters of what it means to be Black and disabled, and having home care workers who are people of color. LaVant sheds this intersectional light, noting, “We’re the most impacted. We’re the ones dying, we’re the ones that are experiencing both as caregivers and the Black community. And as recipients of care. If the pandemic happened any time before the civil rights movement started, or the passage of the Civil Rights Act, who would still have to go to work? Because house workers would still have to go to work, and I see it in the same way.”  

The people who are mostly impacted by this are those who still have to go to work, and they happen to look like LaVant—women of color, and Black women specifically.

Priscilla S. is one of those very women—a Black woman in her early 40s who has been in the field for 11 years. She’s currently working at an agency for $10.50 an hour, with no health care from her agency (but has Medicaid because of her adult disabled daughter). Priscilla’s life—both personally and professionally—has been shaped by COVID-19 in ways that no one should have to endure. Priscilla provides care and support to not just her client; she’s a caregiver at home too.  

Being both a home care worker and caregiver is a unique predicament Priscilla has navigated these several months. In talking with her, it became evident that the fractures of our healthcare system not only affected the way she did her job, but also the quality of care her disabled daughter received when she was in the hospital for a great portion of the pandemic.  

Priscilla had to scale down to one patient during this time, due to the care she had to administer to her daughter. With her one client, a woman in her late 40s who works in higher education, she witnessed her client having to push doctors to examine her for bedsores, which is now being treated. Her client is balancing a full-time job in order to retain the care she deserves, which to Priscilla displays a fault in the way the government treats disabled people: “She’s trying to work every day, because as you know, the government don’t take care of disabled people they help. You can’t live off of what the government gives disabled people.” 

Priscilla’s frustrations with the healthcare system spills over into the lack of support she receives in what she does as a home care worker. “And for me, it’s personal,” she said. “Because when I go in [to a client’s home], I try to treat somebody like I want them to treat my daughter back at home, right. So that extra 20 [to] 30 minutes, that you’re not getting paid for, to make sure that they don’t have bedsores, or to make sure that they are full, or to make sure that they could just simply go to the bathroom completely. Those are things that the system is not looking at, and don’t care to look at. Because if they did care to take these considerations in mind, then they would pay the agencies more, and they will pay the aids more to properly take care of these people.” 

For Priscilla, “They’re not doing enough.” Priscilla echoes sentiments that need to be heard.  She’s proclaiming that aiding home care workers cannot be an afterthought; it’s an imperative call to action. The need for support, increased funding, and protecting the health of themselves and their clients are at critical mass. Priscilla takes tremendous pride in her job, but from hearing her talk for our interview, the stresses of the pandemic and a lacking healthcare system are wearing on her.

“We have a slogan that says, if you can trust Black women with your most precious valuables such as your mother, your children, your grandmother, why can’t you trust us to pay us what we’re worth?” she asked. That question can no longer be rhetorical.  

These two women and their stories are not anomalies; they are the gritty realities of the pandemic. What we do, or not do, as the novel virus continues to ravage our communities will have long-standing consequences for years to come. Remaining idle has cost our country dearly, both in resources not administered efficiently and lives lost. Though the new Biden administration has created an advisory board to address the pandemic, those in our communities may not be able to wait until Jan. 20 for relief and leadership to hopefully exist.  

Vilissa Thompson, LMSW, is a contributing writer covering gender justice at Prism. A macro social worker from South Carolina, she is an expert in discussing the issues that matter to her as a Black disabled...