In 2017, about 41 million friends, neighbors, and family members in the United States provided support to adults with self-care needs, representing $470 billion in unpaid care. Family caregivers are crucial supports to some of the states’ most vulnerable populations, including those most affected by the current coronavirus (COVID-19) pandemic.
As part of its work to help develop a national strategy to better support caregivers through its RAISE Act Family Caregiver Resource and Dissemination Center, the National Academy for State Health Policy (NASHP) with support from The John A. Hartford Foundation, reviewed major caregiving reports, including 12 state reports, and identified the top five policy recommendations that all of the state reports had in common.
As the largest public payers for long-term services and supports, states are seeking strategies and developing policy initiatives to better support the choices of family caregivers and the people they care for. In the last decade, many states have convened meetings of stakeholders and policymakers to document the current needs of family caregivers, resulting in a wide range of state recommendations. These proposed policy changes and reforms recognize that family caregivers provide most of the care for the growing population of people with disabilities, complex needs, and/or frailty. Supporting caregivers also helps support states’ efforts to improve care and reduce costs for these populations.
RAISE Act Family Caregiving Advisory Council
To heighten awareness of family caregiving, Congress passed the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act in 2018. The act established the Family Caregiving Advisory Council and, with help from the Administration for Community Living, tasked it with creating the country’s first national family caregiver strategy. To support the council and identify emerging state needs in this area, NASHP created the center to provide resources to states and to share the council’s findings as it develops its national strategy.
As part of this work, NASHP reviewed major caregiving reports with recommendations, including 12 recent state reports.* From these recommendations, NASHP identified the top five recommendations that the state reports all had in common:
- Improve family caregivers’ access to information, training, and referral;
- Expand family caregivers’ access to services and supports;
- Increase and strengthen the paid care workforce;
- Enhance financial security and employment policies for family caregivers and prohibit discrimination against caregivers in the workplace; and
- Strengthen governance and collaboration between private organizations and public agencies.
Other notable recommendations include expanding respite care, addressing social determinants of health to promote community living, and improving family caregiver research, data, and development.
States Can Lead the Way
State leaders are critical in developing and implementing practical solutions that can sustain the important work of family caregivers. State recommendations reviewed by NASHP will be used to inform the Family Caregiving Advisory Council in their development of the national caregiver strategy, and will help shape resources for states. In the coming months, NASHP will offer a funding opportunity for states interested in improving their state’s policies to better support family caregivers. Participating states will have the opportunity to work with other state leaders and will have access to resources to facilitate the development and implementation of new and innovative practices to support caregivers.
Look for NASHP’s full report on family caregiving recommendations, summarizing recommendations from state, national, and international reports, in the coming weeks. For more information on how states can better support family caregivers, explore NASHP’s RAISE Act Family Caregiver Resource and Dissemination Center.