Direct care workers play a critical role in the success of states’ long-term services and supports (LTSS) systems, but faced with COVID-19, low wages, and few advancement opportunities, states struggle to retain this workforce. Recently, state leaders came together virtually at National Academy for State Health Policy’s annual conference to share strategies to improve recruitment […]
The RAISE Family Caregiver Resource and Dissemination Center
The RAISE Act Family Caregiver Resource and Dissemination Center
Across the nation, state health programs depend on caregivers who provide critical support to help relatives, friends, and neighbors age in place while contributing about $470 billion in unpaid health care services. To better support family caregivers, Congress passed the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act in 2018, which established the Family Caregiving Advisory Council tasked with creating the country’s first national Family Caregiver Strategy.
To support the council’s work, NASHP has created the RAISE Act Family Caregiver Resource and Dissemination Center with support from The John A. Hartford Foundation to:
- Develop family caregiving resources for state and federal policymakers and other stakeholders;
- Provide support to the council and its subcommittee member as they craft policy recommendations;
- Convene experts and thought leaders to provide perspectives and expertise to the council; and
- Support states as they develop policies to address family caregiver issues.
The Family Caregiving Advisory Council
The impact of the nation’s aging population on state budgets and policies cannot be addressed without understanding the needs of family caregivers. Under the RAISE Act, the Secretary of the Department of Health and Human Services must develop a national Family Caregiving Strategy that recommends actions that different stakeholders can take to support family caregivers and meets their diverse needs. The RAISE Act also requires the secretary to convene a Family Caregiving Advisory Council to help inform and shape the strategy by providing recommendations to the secretary.
The council is charged with preparing a report for the secretary that includes effective models of family caregiving and support to family caregivers, as well as opportunities to improve coordination across federal government programs. The secretary will incorporate the council’s report in the strategy, in addition to identifying best practices and other information to support family caregivers. The RAISE Act requires the council to be made up of to 15 voting members who reflect the diversity of family caregivers and care recipients, as well as non-voting representatives from federal departments and agencies who play a role in this issue.
Council Meeting Materials and Resources
In August 2019, the council convened for its first meeting and members shared their guiding values and principles. Read the Family Caregiving Advisory Council Meeting Report for a comprehensive description of the meeting. Review the agenda for the day, which includes the PowerPoint presentations used by presenters during the meeting, and watch the full video of the council’s kick-off meeting.
State Policy Innovations to Support Family Caregivers: States are developing new initiatives to support family caregivers, who provide nearly $470 billion in unpaid health care support and services each year to relatives, friends, and neighbors. Passage of the federal Recognize, Assist, Include, Support, and Engage Family Caregivers (RAISE) Act underscores the urgent attention this issue requires. This blog, State Policy Innovations to Support Family Caregivers, written with support from The John A. Hartford Foundation, explores Hawaii, Washington, and Minnesota’s innovative efforts to assist family caregivers.
Laura Gitlin, PhD
Dean, College of Nursing and Health Professions
Kathleen Kelly, MPA
Family Caregiver Alliance
Assistant Commissioner and Chief
TennCare Long-Term Services and Supports
Chief Executive Officer
Division of Vocational Rehabilitation
Alaska Department of Labor and Workforce Development
National Managing Coordinator
Diverse Elders Coalition
Susan Reinhard, RN, PhD, FAAN
Senior Vice President and Director
AARP Public Policy Institute
David Reuben, MD
Director, Multi-campus Program in Geriatrics Medicine and Gerontology
Chief, Division of Geriatrics,
University of California, Los Angeles
North Carolina Medicaid
North Carolina Department of Health and Human Services
National Association of State Directors of Developmental Disabilities Services
C. Grace Whiting, JD
President and CEO
National Alliance for Caregiving
Jennifer Wolff, PhD
Eugene and Mildred Lipitz Professor and Director
Roger C. Lipitz Center for Integrated Health Care
Johns Hopkins University
For more information, contact Eliza Mette.
The Family Caregiving Advisory Council heard expert presentations on the intersection between the National Alzheimer’s Project Act (NAPA) Council and its own mission to guide the creation of a national caregiving strategy during its Aug. 12, 2020 meeting. The caregiving council is tasked by the Recognize, Assist, Include, Support, and Engage Family Caregivers Act of […]
The National Academy for State Health Policy (NASHP) is developing a report on how family caregiving impacts state Medicaid programs, and the role Medicaid plays in supporting family caregivers. Medicaid — jointly funded and administered by the federal and state governments — provides health coverage to millions of Americans, including low-income adults, children, older adults, and people with disabilities. Relatives and friends […]
The Family Caregiving Advisory Council held its fourth full council meeting on July 16, 2020, to hear expert presentations on Medicare and Medicaid and recommendations from family caregivers to improve caregiving support in the United States. The council is tasked with creating a National Family Caregiving Strategy, as required by the Recognize, Assist, Include, Support, and Engage Family […]
The Family Caregiving Advisory Council held its third full council meeting on May 20 and 21, 2020, to hear presentations on key topic areas, including family leave, respite care, research and data, and an analysis of the input received from the Administration for Community Living’s (ACL) request for information. The council also refined its Driver Diagram to identify […]
To better address the needs of family caregivers, the National Academy for State Health Policy (NASHP) has awarded contracts to National Alliance for Caregiving (NAC) and ADvancing States. Under the contracts, ADvancing States will conduct listening sessions with state aging and disability officials and NAC will hold a listening session with family caregiver advocates and to collect family caregiver vignettes. These activities […]
State Medicaid home- and community-based waivers and state plan amendments can provide critical information, counseling, and training to family caregivers. Recently, the National Academy for State Health Policy (NASHP) reviewed states’ Medicaid 1915(c) and 1115 waivers, and 1915(i) and 1915(j) state plan amendments (SPAs) that focuses on waivers and state plan amendments covering older adults […]
Updated May 7, 2020 In the past two months, 35 states* have rapidly amended their Medicaid home- and community-based services for older adults and their family caregivers to ensure access to long-term services and supports during the COVID-19 crisis. Under new federal rules, the states applied for Medicaid 1915(c) Appendix K waivers to make temporary or […]
To assist the RAISE Act Family Caregiving Advisory Council make its recommendations, NASHP collected and analyzed about 800 recommendations from 27 key family caregiving reports written in the past decade. NASHP synthesized and inventoried the recommendations in this resource, with support from The John A. Hartford Foundation and in collaboration with the US Administration for Community Living.