NASHP, in partnership with the ARCH National Respite Network and Resource Center and support of the U.S. Administration for Community Living, are collaborating on a three-year project to promote best practices and build state capacity for respite care. The goal of this project is to support and foster state and national efforts, including those of the RAISE Advisory Council, to increase access to respite for family caregivers by:
- Developing, testing, and scaling a respite workforce recruitment, training, and retention program
- Hosting a State Summit on Family Caregiving
- Conducting state scans on respite and direct care workforce policy activity
- Featuring case studies and promising practices
Respite Care and Adult Day Maps
NASHP published a series of interactive maps highlighting state Medicaid respite care and adult day policies, with support from the Administration for Community Living and The John A. Hartford Foundation. Family caregivers often ask for these services to give them a break or enable them to go to work. Medicaid is the major public funder for these services, but state policies vary greatly which impacts who receives these services, the amount of services provided, and how much is spent on them.
To find out about respite care and adult day policies within Medicaid in each state, explore these maps:
- Map 1 finds that respite service caps vary greatly among home and-community based service waivers.
- Map 2 finds that state respite care spending is low in most 1915(c) waivers.
- Map 3 finds that some states with Medicaid managed long-term services and supports (MLTSS) specifically give managed care organizations greater flexibility to expand respite coverage.
Read our blog on this map series.
Respite Workforce Pilot Sites Selected
The ARCH National Respite Network and Resource Center and the Respite Care Association of Wisconsin, in collaboration with NASHP, recently announced the sites selected to take part in a respite provider training and recruitment pilot.
The selected sites are in Arkansas, Illinois, Kansas, Massachusetts, Montana, Nevada, New Mexico, New York, Oklahoma, South Carolina, and Wisconsin. Sites were selected for their experience, capacity, and readiness to take part in the pilot.

NASHP Expands Family Caregiving Work with Grants from RRF Foundation for Aging and the US Administration for Community Living
The National Academy for State Health Policy (NASHP) recently received two grants to expand its work supporting family caregivers, which began last year when it launched the Family Caregiver Resource and Dissemination Center to support creation of the country’s first national family caregiver strategy.
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 Resources
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.
Faculty
Laura Gitlin, PhD
Dean, College of Nursing and Health Professions
Drexel University
Kathleen Kelly, MPA
Executive Director
Family Caregiver Alliance
Patti Killingsworth
Assistant Commissioner and Chief
TennCare Long-Term Services and Supports
Sandy Markwood
Chief Executive Officer
N4A
Duane Mayes
Director
Division of Vocational Rehabilitation
Alaska Department of Labor and Workforce Development
Jenna McDavid
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
Dave Richard
Deputy Secretary
North Carolina Medicaid
North Carolina Department of Health and Human Services
Mary Sowers
Executive Director
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.


For individuals living with complex, often chronic conditions, and their families, palliative care can provide relief from symptoms, improve satisfaction and outcomes, and help address critical mental and spiritual needs during difficult times. Now more than ever, there is growing recognition of the importance of palliative care services for individuals with serious illness, such as advance care planning, pain and symptom management, care coordination, and team-based, multi-disciplinary support. These services can help patients and families cope with the symptoms and stressors of disease, better anticipate and avoid crises, and reduce unnecessary and/or unwanted care. While this model is grounded in evidence that demonstrates improved quality of life, better outcomes, and reduced cost for patients, only a fraction of individuals who could benefit from palliative care receive it. 
























































































































































States Cover Respite Care and Adult Day Services in Medicaid Managed Long-Term Services and Supports (MLTSS)
/in The RAISE Act Family Caregiver Resource and Dissemination Center Featured News Home, Maps State Resources, The RAISE Family Caregiver Resource and Dissemination Center Respite Care /by Kimberly HodgesState Respite Care Spending Is Low in Most Home and Community-Based 1915(c) Waivers
/in The RAISE Act Family Caregiver Resource and Dissemination Center Featured News Home, Maps State Resources Respite Care /by Kimberly HodgesState Caps on Respite Waiver Services Vary Greatly
/in The RAISE Act Family Caregiver Resource and Dissemination Center Featured News Home, Maps State Resources, The RAISE Family Caregiver Resource and Dissemination Center Respite Care /by Kimberly Hodges