In focus groups, direct social workers and unpaid caregivers describe low-paid, physically difficult, often mentally overwhelming, and uncertain work



During the last focus group interviews, 32 paid direct care workers and unpaid caregivers who help the elderly and people with disabilities to look after themselves and perform household activities describe a daily job defined by low pay, physical demands and mental stress aggravated by the pandemic.

KFF hosted the four focus groups in July and August 2021 with 24 direct care workers and eight unpaid caregivers to help contextualize the ongoing debate in Congress on increasing federal funding for Medicaid home and community services. (HCBS). Medicaid is the country’s primary payer for these services. Among other uses, new funding could help increase wages for direct care workers, provide training opportunities, and provide family caregiver supports such as respite care and peer support.

Key takeaways from focus groups include:

  • These jobs are as demanding mentally as they are physically. Paid caregivers have reported that the mental demands of their jobs have 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 having regular uncertainty about whether they would be able to leave work at the end of their shift due to staff shortages and scheduling issues exacerbated by the pandemic. . (It is unclear how immunization mandates might contribute to labor shortages, as participants in paid direct care worker groups were divided over whether to receive the COVID-19 vaccine.)
  • Caregivers believe that there is a mismatch between their work and their salary. Paid direct care workers have universally agreed that their wages are low and do not reflect the demands of their job. They described their financial situation as “getting by” and “living paycheck to paycheck.” Some participants in the unpaid caregiver group said that the demands of caregiving made it impossible to get paid work.

The racially and geographically diverse group of focus group participants held various types of jobs, full and part-time, and cared for people with various disabilities and in need of long-term care. The report presents the main highlights of the focus groups, including characteristics of caregivers; physical and mental demands for care; the impact of labor shortages; salaries, finances and opportunities for advancement; and what caregivers would like decision makers 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, offers states a 10 percentage point year-over-year increase in Federal Medicaid Matching Funds (FMAP) for HCBS. Congress is currently debating efforts to increase federal matching funds, without time limits, for state spending on Medicaid HCBS as part of a comprehensive budget reconciliation program, although the final amount of funding remains. on the move as policymakers assess competing priorities.


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