The Hidden Crisis: Caring for Vulnerable Adults at Home During the Coronavirus

The way Sepia Coleman sees it, home health workers like herself have been forgotten during the Covid-19 pandemic. A home health aide in Memphis for almost thirty years, Coleman loves what she does. But the last two months have been a nightmare. “We’re not even accounted for. We’ve been left out,” she says.

Coleman, who makes $10.50 an hour, is not a member of a union and does not get paid if she gets sick and cannot work. The agency she works for, which she declined to name, has tried to provide sufficient personal protective equipment (PPE), but after weeks only got her a handful of disposable surgical masks. “We have not been provided with shields, or gowns, or hand sanitizers,” she says. The absence of equipment and delays in the arrival of necessary supplies for her client sent through the state Medicaid program has meant numerous trips to Memphis stores, relentlessly seeking and then paying for the sanitizer and adult diapers she and her client, a paraplegic man in his thirties, need. “I’ve had to use my own money,” says Coleman, who supplements her home health job by working night shifts as a certified aide in a local nursing home.

While the challenge is particularly acute for frontline workers, the provider who employ home health workers describe similar frustrations, as do providers who run group homes or day services for individuals with intellectual disabilities.  During the pandemic, “we are at the bottom of the totem pole,” says Barbara Merrill, chief executive officer at the American Network of Community Options and Resources (ANCOR), a trade association for organizations serving that community.

The situation in states and cities varies tremendously. Some states have recognized the importance of workers caring for the elderly, the most vulnerable population during the coronavirus pandemic, and are temporarily paying them more. Arkansas and Michigan, for example, each got permission from the federal government to use Medicaid to pay the bonuses to not only home health aides, but workers in nursing homes and other facilities. Some governments, too, have been attentive to making sure that home health aides and visiting nurses get the PPE they need, but with rampant shortages home care in some locations has received little attention.

One problem, cited by Ken Albert, president and chief executive officer of Androscoggin Home Healthcare & Hospice in Maine, has been guidance offered by the Federal Emergency Management Agency (FEMA), which left home care workers out of its prioritized list of who should get PPE.  In the early weeks of the pandemic, Maine followed that guidance, leaving Albert with ongoing concerns about his ability to supply employees with equipment. Since then, the situation improved as Maine officials realized that the FEMA guidelines did not align with where patients were and who was in the most need and opened up supplies for home care workers.

“The majority of states in this country have been grappling with this,” Albert says.

The confusion about protective equipment also extended in the early days of the pandemic response to the status of workers and uncertainty as to whether they were classified as essential. “It was very vague,” says Andrea Devoti, executive vice president of the National Association for Home Care and Hospice. “We had to fight to get them included as essential workers. Some of them were afraid to go out because they feared being stopped by the police.”

She also worries about how fear is affecting home health clients and their families, with some now refusing services.  “Many companies have seen the census of patients drop off precipitously,” says Devoti. People who need home health care may put themselves at risk because they’re afraid of being infected if they let someone into their home. “I’m just so fearful that some people will not know how to maintain their health. They won’t know how to take care of themselves,” she says.

For many years, Service Employees International Union (SEIU) and other labor representatives have been fighting for sick leave benefits for the nation’s 2.8 million home health workers, who are both employed by agencies and independently by individual clients. Historically, home care workers have been exempted from many labor laws that cover other workers. Now, during the pandemic, SEIU is pushing employers and state governments to include these aides in the paid sick and family leave provisions of the Families First Coronavirus Response Act.

Stresses faced during the pandemic add to those that have bedeviled the fast-growing field in prior years.  About 73% of long-term care is now provided in the home environment if unpaid care by family is included with the labor of paid health and personal care workers, according to the National Care Planning Council. But when paid help is necessary, the abysmally low compensation means hiring and sustaining a workforce to fill home-based jobs has been an ongoing struggle.

An industry home health care survey, conducted online between December 2019 and January 2020, found 44% of respondents citing staffing problems as their biggest challenge. With the coronavirus, that challenge is now heightened by fears for the health and safety of home health aides who are predominantly low-income individuals of color who often must take public transportation and live in neighborhoods with higher rates of Covid-19 infection.

And these workforce strains are not limited to people working with the older people in their homes. Eighty percent of individuals with intellectual disabilities now receive care in the community as opposed to in institutions, according to Barbara Merrill with ANCOR.  A 2018 staff stability report, published by the Human Services Research Institute and the National Association of State Directors of Developmental Disability, found employee turnover for the 4,400 providers included in the report ranged from 31 to 63%.

Before the pandemic, ANCOR was seeing staff vacancy rates in states averaging 10 to 25%. “And along comes the coronavirus,” says Merrill, “And we are woefully unprepared.”

That lack of preparedness during a major crisis underscores the need for dramatic improvements in the protections, pay and benefits that are so necessary for the individuals who care for people who need help caring for themselves. The coronavirus outbreak exposed significant weaknesses in a system of care that continues to grow as the population ages. Resources for adequate pay will inevitably be tight, which is a major obstacle. But dealing with this and other challenges must be addressed in order to hire and retain workers. The alternative puts America’s most vulnerable at great risk.