In Focus Groups, Direct Care Workers and Unpaid Caregivers Describe Low-Wage, Physically-Challenging Work That is Often Mentally Overwhelming and Marked By Uncertainty

In recent focus group interviews, 32 paid direct care workers and unpaid caregivers who assist seniors and people with disabilities with self-care and household activities describe daily work defined by low pay, physical demands and mental stress that has been made worse by the pandemic.

KFF conducted the four focus groups in July and August 2021 with 24 direct care workers and eight unpaid caregivers to help provide context for the ongoing debate in Congress about increasing federal funding for Medicaid home and community-based services (HCBS). Medicaid is the nation’s primary payer for such services. Among other uses, new funding could help raise wages for direct care workers, provide training opportunities and offer supports to family caregivers such as respite care and peer supports.

Key takeaways from the focus groups include:

• These jobs are mentally demanding as well as physically taxing. Paid caregivers reported that the mental demands of their jobs had intensified during COVID-19. Among other things, they cited the fear of infecting their clients or bringing the virus home to infect their families. Unpaid family caregivers described the mental demands associated with caregiving as often “overwhelming.”
• Uncertainty is a constant. A number of paid caregivers described regularly experiencing uncertainty about whether they would be able to leave work at the end of their shift due to staffing shortages and scheduling challenges that were exacerbated by the pandemic. (It is unclear how vaccination mandates might contribute to workforce shortages, as participants in the paid direct care worker groups were divided about whether to receive the COVID-19 vaccine.)
• Caregivers feel there is a mismatch between their work and their wages. Paid direct care workers universally agreed that their wages are low and do not reflect the demands of their jobs. They described their financial situation as “getting by” and “living paycheck to paycheck.” Some participants in the unpaid caregiver group said the demands of caregiving made it impossible to have paid work.

The racially and geographically diverse group of focus group participants worked in a range of job types, both full- and part-time, and cared for people with a variety of disabilities and long-term care needs. The report presents key highlights from the focus groups including caregiver characteristics; physical and mental caregiving demands; the impact of workforce shortages; wages, finances, and opportunities for advancement; and what caregivers would like policymakers to know about their work. While these focus groups are not necessarily generalizable to all caregivers, they can provide insight into their experiences to help inform current policy debates.

The American Rescue Plan Act (ARPA), passed earlier this year, provides states with a one-year, 10 percentage point increase in federal Medicaid matching funds (FMAP) for HCBS. Congress is currently debating efforts to increase federal matching funds, without a time limit, for state spending on Medicaid HCBS as part of an overall budget reconciliation package, although the final funding amount remains in flux as policymakers weigh competing priorities.