Katherine E M Miller1,2,3, Sally C Stearns2,4, Courtney H VAN Houtven1,5,6, Donna Gilleskie4, George M Holmes2,7, Erin E Kent2,7,8. 1. Durham Center of Innovation to Accelerate Discovery and Practice Transformation, Durham VA Health Care System. 2. Gillings School of Global Public Health, University of North Carolina at Chapel Hill. 3. Author affiliation at time work was conducted. 4. University of North Carolina at Chapel Hill. 5. Population Health Sciences, Duke University School of Medicine. 6. Duke Margolis Center for Health Policy, Duke University. 7. Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill. 8. Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill.
Abstract
Policy Points In the absence of federal policy, states adopted policies to support family caregivers, but availability and level of support varies. We describe, compare, and rank state policies to support family caregivers as aligned with National Academy of Medicine recommendations. Although the landscape of state policies supporting caregivers has improved over time, few states provide financial supports as recommended, and benefit restrictions hinder accessibility for all types of family caregivers. Implementing policies supporting family caregivers will become more critical over time, as the reliance on family caregivers as essential providers of long-term care is only expected to grow as the population ages. CONTEXT: In the United States in 2020, approximately 26 million individuals provided unpaid care to a family member or friend. On average, 60% of caregivers were employed, and they provided 20.4 hours of care per week on top of employment. Although a handful of patchwork laws exist to aid family caregivers, systematic supports, including comprehensive training, respite, and financial support, remain limited. In the absence of federal supports, states have adopted policies to provide assistance, but they vary in availability and level of support provided. Our objectives were to describe, compare, and rank state policies to support family caregivers over time. METHODS: We used publicly available data from the AARP Long-Term Services and Supports State Scorecard, the National Academy for State Health Policy, and Tax Credits for Workers and Families for all 50 states and the District of Columbia (2015-2019). FINDINGS: We found that states had increased supports to family caregivers over this five-year period, although significant variability in adoption and implementation of policies persists. Approximately 20% of states had enacted policies that exceed the federal Family and Medical Leave Act requirements, and 18% offered paid family leave. However, most states had not improved spousal impoverishment protections for Medicaid beneficiaries. For example, from 2016 to 2019, 24% of states provided fewer or no protections, while 71% of states did not improve spousal impoverishment protections over time. Access to training for caregivers varied based on eligibility criteria (e.g., select populations and/or only co-residing caregivers). CONCLUSIONS: Overall, state approaches to support family caregivers vary by eligibility and scope of services. Substantial gaps in support of caregivers, particularly economic supports, persist. Although the landscape of state policies supporting caregivers has improved over time, few states provide financial supports as recommended by the National Academy of Medicine, and benefit restrictions hinder accessibility for all family caregivers.
Policy Points In the absence of federal policy, states adopted policies to support family caregivers, but availability and level of support varies. We describe, compare, and rank state policies to support family caregivers as aligned with National Academy of Medicine recommendations. Although the landscape of state policies supporting caregivers has improved over time, few states provide financial supports as recommended, and benefit restrictions hinder accessibility for all types of family caregivers. Implementing policies supporting family caregivers will become more critical over time, as the reliance on family caregivers as essential providers of long-term care is only expected to grow as the population ages. CONTEXT: In the United States in 2020, approximately 26 million individuals provided unpaid care to a family member or friend. On average, 60% of caregivers were employed, and they provided 20.4 hours of care per week on top of employment. Although a handful of patchwork laws exist to aid family caregivers, systematic supports, including comprehensive training, respite, and financial support, remain limited. In the absence of federal supports, states have adopted policies to provide assistance, but they vary in availability and level of support provided. Our objectives were to describe, compare, and rank state policies to support family caregivers over time. METHODS: We used publicly available data from the AARP Long-Term Services and Supports State Scorecard, the National Academy for State Health Policy, and Tax Credits for Workers and Families for all 50 states and the District of Columbia (2015-2019). FINDINGS: We found that states had increased supports to family caregivers over this five-year period, although significant variability in adoption and implementation of policies persists. Approximately 20% of states had enacted policies that exceed the federal Family and Medical Leave Act requirements, and 18% offered paid family leave. However, most states had not improved spousal impoverishment protections for Medicaid beneficiaries. For example, from 2016 to 2019, 24% of states provided fewer or no protections, while 71% of states did not improve spousal impoverishment protections over time. Access to training for caregivers varied based on eligibility criteria (e.g., select populations and/or only co-residing caregivers). CONCLUSIONS: Overall, state approaches to support family caregivers vary by eligibility and scope of services. Substantial gaps in support of caregivers, particularly economic supports, persist. Although the landscape of state policies supporting caregivers has improved over time, few states provide financial supports as recommended by the National Academy of Medicine, and benefit restrictions hinder accessibility for all family caregivers.
Authors: Courtney Harold Van Houtven; Valerie A Smith; Karen M Stechuchak; Megan Shepherd-Banigan; Susan Nicole Hastings; Matthew L Maciejewski; Gilbert Darryl Wieland; Maren K Olsen; Katherine E M Miller; Margaret Kabat; Jennifer Henius; Margaret Campbell-Kotler; Eugene Z Oddone Journal: Med Care Res Rev Date: 2017-04-01 Impact factor: 3.929
Authors: Courtney Harold Van Houtven; Katherine E M Miller; Emily C O'Brien; Jennifer L Wolff; Jennifer Lindquist; Margaret Kabat; Margaret Campbell-Kotler; Jennifer Henius; Corrine I Voils Journal: Med Care Res Rev Date: 2017-12-21 Impact factor: 3.929
Authors: Katherine E M Miller; Sally C Stearns; Courtney H VAN Houtven; Donna Gilleskie; George M Holmes; Erin E Kent Journal: Milbank Q Date: 2022-05-17 Impact factor: 6.237
Authors: Katherine E M Miller; Sally C Stearns; Courtney H VAN Houtven; Donna Gilleskie; George M Holmes; Erin E Kent Journal: Milbank Q Date: 2022-05-17 Impact factor: 6.237