Direct care workers and family caregivers remain “deeply undervalued” and often overlooked despite calls for investment in the care economy, according to the authors of a new report.
“These caregivers provide a lifeline for older adults, people with disabilities, and people living with chronic conditions,” PHI and the National Alliance for Caregiving said in an issue brief released Wednesday. “Empowering them in their roles will help to ensure high quality, responsive care to meet the needs and preferences of millions of Americans now and in the future.”
The organizations called on providers, Congress, the Department of Labor, the Centers for Medicare & Medicaid Services, the federal Health Resources and Services Administration, states, managed care plans and advocates to invest in the “essential partnership” between direct care workers and family caregivers.
The new brief includes insights from a variety of stakeholders: direct care workers, family caregivers and leaders in caregiving, aging and disabilities services, workforce development, home care, and Medicare and Medicaid. The result is a list of recommendations that prioritize improvements to direct care jobs.
Through a grant form The John A. Hartford Foundation, PHI and NAC launched the Together in Care initiative in 2023 to elevate the relationships between direct care workers and family caregivers. The new publication draws attention to opportunities to change the paradigm for those two caregiving groups and the need for research to inform policy and practice-based interventions.
Caregivers face numerous challenges
In the issue brief, PHI and NAC said that direct care workers face poor job quality, lack sufficient training, have inadequate compensation and support, and face limited opportunities for advancement. Family caregivers face isolation, care coordination challenges, economic effects and their own health risks, the groups said.
More than 4.8 million direct care workers — including personal care aides, home health aides and nursing assistants — support older adults and people with disabilities living in residential settings, including assisted living, as well as private homes, nursing homes and other care settings. Almost half of the workforce (46%) relies on public assistance, and more than one-third (39%) live in or near poverty, according to the brief.
Direct care workers have limited access to health insurance and paid time off, insufficient training, lack of recognition and respect, and limited advancement opportunities, the authors said. Those factors, according to the brief, contribute to high turnover rates and a shortage of workers.
That workforce shortage is intersecting with a rapidly aging population. Between 2021 and 2031, the direct care workforce is projected to add more than 1 million new jobs, representing the largest growth of any job sector in the nation. During the same timeframe, almost 9.3 million total direct care jobs will need to be filled, reflecting both new jobs and vacancies created as existing workers leave the field or exit the labor force. (In senior living specifically, Argentum projects that the industry will need to fill 3 million job openings by 2040.)
The plight of caregivers is garnering national attention.
The 2022 National Strategy to Support Family Caregivers called for the formation of a federal interagency task force to develop a direct care workforce development plan. In April 2023, President Biden signed an executive order that included more than 50 actions designed to enhance care, recognizing the importance and interdependence of paid and unpaid caregivers, and he called on executive agencies to advance a care agenda that elevated the roles of direct care workers and family caregivers.
Recommendations are in 4 areas
Based on stakeholder feedback, PHI and NAC identified recommendations in four areas to strengthen the partnership between direct care workers and family caregivers:
- Promote care team integration,
- Expand access to self-direction,
- Strengthen matching services registries, and
- Invest in research and evaluation.
The authors proposed specific policies to support the full integration of direct care workers and family caregivers into interdisciplinary care teams, including training, technology and regulatory change. Specifically, the authors called for the HRSA to develop policy guidance informed by pilot studies, state and provider organizations should provide training for staff and family caregivers on communication and collaborative problem-solving, create advanced roles for direct care workers to support care team integration, and make telehealth flexibilities permanent.
Additional policy recommendations were called for to address the economic challenges of family caregivers, help meet the demand for direct care workers and capitalize on family members’ understanding of individual needs and preferences. The authors also called on states to develop targeted training and support for family caregivers who seek pathways to longer-term employment in direct care and other long-term services and supports roles.
Expanding the number of states with matching service registries to facilitate connections between individuals, families and direct caregivers could expand the effects of those resources, the authors stated. Specifically, they recommended that matching services registries be designed in collaboration with state-level departments of labor, health and education; LTSS provider networks, community-based organizations; consumers; family caregivers; and direct care workers.
The authors also suggested research into the collaborative relationship between direct care workers and family caregivers to support evidence-based practices to strengthen person-and-family-centered care.
PHI and NAC noted that their recommendations were intended as a starting point for a national conversation about the roles and contributions of direct care workers and family caregivers.
