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.
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