Nancy, a single woman with cerebral palsy, experienced a decline in functioning in middle age. By using a personal care aide (PCA) a few hours each day to help her bathe, dress, cook, and clean, Nancy was able to live on her own for many years.

As her needs increased, she reached limits on what Medicaid would pay. Nancy made the difficult decision to move to assisted living with onsite 24/7 personal care support.

Then COVID-19 hit. Nancy knows the advantages of social distancing, but her care requires close physical contact. Her PCAs take public transportation and care for others besides Nancy. They do not have regular access to personal protective equipment (PPE) because of shortages and lack of priority status to obtain such equipment. The facility attempts to compensate by screening staff members’ temperatures and symptoms upon arrival and through reliance on handwashing, but Nancy worries this is not enough. She hears that in some states up to 50 percent of deaths from COVID-19 are people who reside in long-term-care facilities.

Who Are Direct Care Workers?

Nancy’s PCAs are one example of direct care workers — people who assist older adults and others with disabilities with daily tasks and long-term-care activities. Half of PCAs work in home-based settings. There are 4.5 million direct care workers in the United States. They are overwhelmingly women (86%), most are people of color (59%), and about a quarter are immigrants. About 18 percent live in poverty and another 44 percent have low incomes. More than half (53%) rely on some form of public assistance; a quarter have Medicaid (26%) or use supplemental nutrition (SNAP) benefits (24%). About one in five lack health insurance. More than half are middle-aged or older (30% over age 55), placing them at higher risk for infection with COVID-19.They are unlikely to have sick leave if they become ill. Given the aging American population, the direct care workforce is projected to be the fastest-growing segment in the U.S. labor market in the next decade.

Who Needs Direct Care Workers?

Twenty million older adults and people with disability need assistance with activities of daily living (e.g., bathing, dressing) and routine daily tasks (e.g., cooking, shopping). The overwhelming majority (17 million) live in the community, rather than in facilities. Most receive assistance from unpaid caregivers — family or friends — but many require support from paid direct care workers. Someone turning 65 today has a 70 percent chance of needing long-term care; 20 percent over 65 will need this support for five years or longer. More than 4 million people receiving personal care in the community have low incomes and qualify for home- and community-based services through Medicaid. Recipients of home- and community-based services are disproportionately older adults, people of color, have chronic illnesses, and are at high risk for serious illness and death if they contract COVID-19. If their in-home care system falls apart, they could easily end up with worsening health, hospitalized, or in a nursing home.

The response to the COVID-19 pandemic has not recognized the importance of this massive invisible workforce. Most communities have no system for distributing PPE to these workers or testing them routinely for coronavirus. Some direct care workers are therefore unknowingly bringing coronavirus into the homes of their clients or having to make the difficult choice of putting themselves and others at risk in order to work.

During the pandemic, ongoing health care and economic policy discussions should support this essential workforce and the patients who depend on it by:

  1. Designating direct care workers, including both agency workers and those who function as independent contractors, as “essential workers.” This will allow them to work during stay-at-home orders and provide seamless care to people with disabilities, as well as receive supports such as PPE and childcare that are reserved for essential workers.
  2. Developing statewide or local registries of workers to quickly identify those in this workforce and provide benefits and protections.
  3. Providing access to coronavirus testing and PPE, along with policies to address infection monitoring and treatment.
  4. Enhancing wage support by increasing compensation rates or providing hazard pay. Strategies must be carefully constructed to ensure that compensation makes its way to the direct service worker, not the employer, and does not create ineligibility for income-based benefits such as Medicaid and SNAP.
  5. Providing guaranteed health insurance and sick leave, especially during the pandemic.

Such steps could go a long way to keep Nancy and her PCA safe and would strengthen the ability for all those who depend on such services to stay in their homes and out of hospitals and nursing homes and assisted living.