Caregivers are struggling to get the help they need during the pandemic

Lucia Dey, a caregiver and the owner of BeServed Concierge, a home-health agency in Northern Virginia, has seen her client list shrink since the coronavirus hit the United States hard in March.

“Things have changed,” she said. “We have been asked to stop coming to many of our clients’ homes. We are down from five clients to just one.”

Experiences like Dey’s are becoming common when it comes to home health care, an industry that was already plagued by low wages, a lack of training, and a growing senior population that outnumbers potential family caregivers — problems that are all poised to get worse with the virus.

The direct care workforce is enormous and growing. It has gone from 2.9 million workers in 2008 to 4.5 million today, and is expected to add another 1.3 million direct care jobs between now and 2028 — more new jobs than in any other occupation in the United States.

Despite this, direct care workers continue to struggle with being undervalued and unrecognized.

Kezia Scales, director of policy research at PHI, a Bronx-based nonprofit that works to improve long-term services and supports for elders and people with disabilities, says the COVID-19 pandemic is bringing the marginalization of direct care workers to light, and it’s also exacerbating the inequities its workforce faces in contrast with its more visible colleagues — doctors and registered nurses in acute-care settings.

“Direct care workers are working just as hard to try to prevent transmission of the virus and to then care for people when they get the virus. They are just as in need of PPE, emergency paid leave policies, and access to child care,” Scales said. “We really want to keep these workers at the forefront of the discussion. They provide services that are essential for millions of older adults and people across the country.”

The solutions can be hard to see during a pandemic. Many direct care workers need to stay home to protect the health of their families, or because, as in Dey’s case, the patients they care for might contract the coronavirus from direct care workers, who are likely seeing other patients and community members.

Dey, who has asthma and says her prescription is delayed at the local CVS, isn’t able to visit clients herself right now because she’s too high-risk. She still has staff who are willing to work, but that could change as more direct care workers or their patients contract the virus.

Scales says hazard pay for direct care workers — from both Medicaid and private agencies — is necessary in this current moment of crisis, and that it will be equally important to translate that hazard pay into a livable wage in the long run.

“This is essential work, and it should be compensated in such a way that direct workers can do their jobs and be economically self-sufficient,” she said.

The median hourly rate for all direct care workers, meaning workers in both home and institutional settings, is $12.27 per hour, and median annual earnings, due to low wages and high rates of part-time employment, are just $20,200.

Wages have not kept pace with the increasing demand for workers over the past decade; even as the direct care workforce doubled, wages increased by only three cents. Among direct care workers, home care workers earn the least, at $11.52 per hour and $16,200 per year. Altogether, 15% of direct care workers live in poverty.

Compounding the barriers to equitable pay, recognition, and training in the industry is the fact that this workforce is predominantly comprised of women, people of color, and immigrants — groups that already face discrimination.

And as more and more data is collected about people of color being disproportionately hard-hit by COVID-19 in the United States, the direct care workforce appears increasingly vulnerable.

LeadingAge is a national membership association of 6,000 nonprofit health care providers. Their members work across all areas of long-term service and support for the elderly and disabled, including assisted-living facilities, home-based health aide agencies, adult day care centers, and affordable senior housing services.

Robyn Stone, the group’s co-director and senior vice president of research, says COVID-19 has turned her members “upside down.”

“Staff are becoming sick, and we were already in a staffing shortage,” Stone said. “We are advocating for hiring with quick but efficient training to keep services going. Our front-line providers are certified nurse’s aides and home-health aides, and they are low-income workers with stressful life situations. They are already struggling with child care and transportation and just those basic needs.”

Stone worked with Christian Weller and Marc Cohen, fellow gerontology and public policy researchers at the University of Massachusetts Boston, on a study pertaining to the COVID-19 pandemic in the context of the substantial health risks for home health aides.

They say it’s too early to know how many aides are still working in people’s homes, but they have the sense that most of them will likely continue doing their jobs for one of two reasons, or a combination of both: people depend on them, and they have few other sources of income and little savings.

According to their research, the ones who are working will be going to their jobs not knowing whether the older adult or family member living in the home has the virus. In many cases, they will care for people who have been released home from hospitals after treatment, yet they may lack essential protective equipment, even things as basic as hand sanitizer and gloves.

Scales hesitates to speculate about whether or not people will stop taking direct care jobs because they are afraid of COVID-19, but she said she knew of at least one patient of direct care workers who said they were afraid workers would leave the industry and not come back after the crisis.

Without home care workers, the researchers say, there could be a surge in demand for hospital beds and respirators, and more people could die as a result.

John Schall, CEO of Caregiver Action Network, an organization that represents unpaid family caregivers, says he interacts with the paid caregiver sector and the economics of the industry has been problematic for quite some time. COVID-19 is bringing to light a major flaw in the system.

“This is not an unexpected problem. Caregivers are making very low wages. You can see why they might think exposure to COVID-19 is not worth the risk for them and their families. On the other side of it, patients don’t want to take the risk of caregivers coming into the house right now,” he said.

Schall says that unpaid caregiving within families is difficult even in the best of times because most family caregivers have other jobs and other family members, and they have to add full-time patient management on top of their other responsibilities: “Add coronavirus on top of all that and it gets awfully challenging.”

In addition to the emotional cost of family caregiving, it’s also expensive. Schall estimates the out-of-pocket cost is $10,000 per year for a family caregiver to purchase things such as grab bars for showers, adult undergarments, medications, stairlifts, and a whole host of supplies.

Schall says CAN is supporting a bipartisan bill introduced by Rep. Katie Porter (D-CA) and Sen. Corey Gardner (R-CO) that will enable family caregivers to use funds from health savings accounts for expenses related to in-home caregiving.

“We want them to include this idea to go into the fourth coronavirus assistance bill,” Schall said.

Moira Quinn, a certified nurse practitioner at UMass Memorial Health Care in Worcester, Massachusetts, was an unpaid family caregiver to her mother for more than a dozen years.

From a medical and a personal perspective, she said, home caregiving in the time of COVID-19 poses an array of problems and risks.

“My mother needed help with everything, and I had to work full-time, plus raise two kids while caregiving. I had to rely on other people to come into the house, and there is an enormous risk that those health care people have been exposed,” Quinn said.

Quinn also said she would be particularly concerned about caring for her mother at home now because she herself is a health care worker with high exposure risk.

On a more personal note, she said, she feels deeply for caregivers during the COVID-19 crisis, because even in better times the job can be excruciatingly lonely.

“It’s already so isolating to be a caregiver, and now, with this virus, it has to be so much worse,” Quinn said.

Published with permission of The American Independent Foundation.