While there is no central national data system for tracking the direct care workforce, there are numerous federal, state, and employer data collection and evaluation efforts that can be used to examine direct care workforce demographics, job roles, wage trends, and recruitment/retention strategies. The resources in this section highlight some of these recent data and evaluation efforts.
Federal Resources
- State Efforts to Improve Direct Care Workforce Wages: State Case Studies Report— Report that addresses policies aimed at improving wages for DCWs and includes perspectives from stakeholders in multiple states (ASPE, 2023)
- Long-Term Services and Support: Demand Projections, 2021-2036— Resource that highlights workforce projections for occupations based in long-term services and support in the United States (Health Resources and Services Administration, 2023)
- American Rescue Plan of 2021 (ARP) Section 9817 State Spending Plan Summaries— Illustrative examples and information on states’ planned and reported spending under ARP Section 9817 as of December 2022 (CMS, 2024)
- Direct Care Workforce Experienced Limited Wage Improvements Despite State Policy Efforts— Results from of a descriptive analysis assessing the relationship between state-level policies implemented between 2010 and 2018 to improve DCW compensation and the wages of DCWs (ASPE, 2024)
- State Efforts to Improve Direct Care Workforce Wages: Final Report— Project that examined state policies aimed at increasing DCW wages implemented since 2009 (ASPE, 2024)
- State Efforts to Improve Direct Care Workforce Wages: State Case Studies— Results of case studies in six states that have policies specifically aimed at increasing DCW wages (ASPE, 2024)
- Wages of Direct Care Workers Lower Than Other Entry-Level Jobs in Most States— Results from a descriptive analysis comparing state-level median wages of DCWs with median wages of workers employed in other entry-level jobs (ASPE, 2023)
- State Efforts to Address Medicaid Home- and Community-Based Services (HCBS) Workforce Shortages— Describes current issues facing the HCBS workforce and the Medicaid levers available to address them (Medicaid and CHIP Payment and Access Commission, 2022)
- Direct Support Professionals (DSP) Think Tank Recommendations— Detailed exploration of topics including career paths and training, the professionalization of DSPs, improvements in wages and benefits, and the potential for DSP roles to serve as a career path for individuals with disabilities (U.S. Department of Labor, 2022)
- Long-Term Care Workforce: Better Information Needed on Nursing Assistants, Home Health Aides, and Other Direct Care Workers— Report to the House ranking member, subcommittee on health care, benefits, and administrative rules, committee on oversight and government reform (U.S. Government Accountability Office, 2016)
Other Resources
Statistics and Snapshots
- Caring for the Future: The Power and Potential of America’s Direct Care Workforce— Culmination of a year-long series of reports providing a comprehensive, current-day analysis of the direct care workforce and its critical role in the long-term care system in the United States (PHI, 2021)
- State of the Workforce 2022 Survey Report— Comprehensive data on provider agencies and the direct support professional workforce providing direct supports to adults with I/DD (National Core Indicators Intellectual and Developmental Disabilities, 2024)
- Direct Care Workers in the United States: Key Facts 2023— Key statistics on the direct care workforce (PHI, 2023)
- Direct Care Worker Disparities: Key Trends and Challenges— Detailed snapshot of the direct care workforce by gender and race/ethnicity that underscores the need for policy and practice interventions to address disparities (PHI, 2022)
- In-Home and Residential Long-Term Supports and Services (LTSS) for Persons With Intellectual or Developmental Disabilities: Status and Trends 2019— Results of an annual survey of state agencies focused on people with intellectual and developmental disabilities receiving LTSS with a chart gallery of customizable data visualization tools (Research and Training Center on Community Living, University of Minnesota, 2022)
- Users of Veteran-Directed Care and Other Purchased Care Have Similar Hospital Use and Costs Over Time— Study finds that veterans enrolled in the U.S. Department of Veterans Affairs’ self-directed home- and community-based services program experienced similar decreases in hospital use and costs before and after enrolling (Health Affairs, 2019)
- Residential Information Systems Project (RISP)— Longitudinal study explores long-term services and supports received by people with intellectual and developmental disabilities (Institute on Community Integration, 2019)
- Policy Research Brief: Most People with IDD Getting Long-Term Supports Live with a Family Member— Describes living arrangements of people with intellectual and developmental disabilities, trends in Medicaid home & community-based services (HCBS) funding, state variations, and challenges for family caregivers (Institute on Community Integration, 2022)
Policy and Legislation
- Addressing the Direct Care Workforce Shortage— Bipartisan legislative and administrative federal policy solutions to promote retention, increase the number of workers, and improve standardized data collection and publicly available data (Bipartisan Policy Center, 2023)
- Historical Mismatch Between Home-Based Care Policies and Laws Governing Home Care Workers— Looks at the ever-growing gap between demand for direct care services and the workforce needed to deliver them (Health Affairs, 2019)
- The Case for Inclusion: Making Good on Our Nation’s Promise of Community Inclusion for All— Provides insight into the impact of the direct support workforce crisis on community inclusion and reaffirms the policy solutions necessary to stabilize the workforce and begin to rebuild the community-based services infrastructure (The ANCOR Foundation and United Cerebral Palsy, 2023)
Rural Issues
- Intersections of Personal Assistance Services for Rural Disabled People and Home Care Workers’ Rights— Explores intersections of forces that shaped federal-level policies, the current state of the policies, and recommendations for how to better address the needs of people using home-based personal care services and the professionals who provide them (National Library of Medicine, 2022)
- "It's a Human Connection:" Paid Caregiving in Rural America— Describes phase one of a project that examines the experience of being a personal care aide in rural America (University of California San Francisco and University of Montana, 2023)
- Personal Care Assistance in Rural America— Explores where people who need help with daily activities live and personal care aides are located (University of California San Francisco and University of Montana, 2022)
- Who Will Care for Rural Older Adults? Measuring the Direct Care Workforce in Rural Areas— Examines existing disparities in the supply of home health aides and nursing assistants (Rural Health Research Center, University of Minnesota, 2022)
- How PHI’s Coaching Approach® Training Helps Rural Aging Interventions— Showcases training, developed in collaboration with Lutheran Services in America, to bolster the skills of Rural Aging Action Network staff when assessing older adults (PHI, 2023)
The Need for Data Collection
- Direct Care Workers Count: Why Data Matters to Advance Workforce Equity— Recommendations to improve data collection to help address inequities commonly faced by direct care professionals (The Center for Equity)
- The Need for Monitoring the Long-Term Care Direct Service Workforce (DCW) and Recommendations for Data Collection— Makes the case for a minimum data set related to the DCW (PHI, 2009)
- Using Data for Good: Toward More Equitable Home- and Community-Based Services (HCBS) in Medi-Cal— Summarizes the complexities and challenges of the current HCBS infrastructure for data collection (California Health Care Foundation, 2021)