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Recognize, Assist, Include, Support, & Engage (RAISE) Family Caregivers Act Advisory Council
Related news: Executive Order Expands Access to Community Living Services, Supports Family Caregivers
2022 National Strategy to Support Family Caregivers
On September 21, 2022, the 2022 National Strategy to Support Family Caregivers was delivered to Congress. The Strategy includes nearly 350 actions the federal government will take to support family caregivers in the coming year and more than 150 actions that can be adopted at other levels of government and across the private sector to begin to build a system that ensures family caregivers – who provide the overwhelming majority of long-term care in the United States– have the resources they need to maintain their own health, well-being, and financial security while providing crucial support for others. The strategy was developed jointly by the advisory councils established by the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act and the Supporting Grandparents Raising Grandchildren (SGRG) Act, with extensive input from family caregivers, the people they support and other stakeholders.
Now Available: 2024 Federal Progress Report
On Sept. 17, 2024, ACL delivered to Congress a progress report on federal implementation of the strategy. The report found that in the two years since the strategy's release, nearly all the federal actions committed to in 2022 were complete or are in progress, and federal agencies committed to almost 40 new actions since the strategy’s release. Along with the report, ACL published a set of data tables showing the status of more nearly 350 actions undertaken by 15 federal agencies in support of the strategy.
- Read the Report to Congress on Federal Implementation of the Strategy
- View the data tables that show the progress made by federal agencies
- Read the HHS press release
RAISE Family Caregiving Advisory Council
To support the development and execution of the strategy, the RAISE Family Caregivers Act directed the establishment of the RAISE Family Caregiving Advisory Council. The advisory council is charged with providing recommendations to the Secretary of Health and Human Services on effective models of family caregiving and support to family caregivers, as well as improving coordination across federal government programs.
The law specified that the advisory council must include up to 15 voting members who reflect the diversity of family caregivers and people who receive support, with at least one from each of the following constituencies:
- Caregivers
- Older adults who need long-term services and supports
- Individuals with disabilities
- Health care and social service providers
- Providers of long-term services and supports
- Employers
- Paraprofessional workers
- State and local officials
- Accreditation bodies
- Veterans
In addition, the advisory council includes non-voting representatives from federal departments and agencies who play role in these issues.
Advisory Council Members
- Non-federal members
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Jesse Bracisco became paralyzed from the neck down at age 10. He relied on family members for care until age 18 when he hired individuals from the community to be his caregivers so that he could live independently. Without the support of his family and community, Bracisco believes he would have had to live in a nursing home. Bracisco’s experience has given him insight into the responsibilities of hiring and managing staff and the importance of receiving care in the home to remove barriers to independent and community living.
Jonathan Cottor, MBA, MPH, is CEO/founder of the National Center for Pediatric Palliative Care Homes. He previously cofounded Ryan House, a successful freestanding respite, palliative, and hospice care home in Phoenix, Arizona. Proud dad of a son diagnosed with a rare disease who lived for 17 years, Cottor focuses on championing support for medically fragile children and their families. While these families make up a small percentage of the population and often get missed in policy discussions and health care priorities, he believes that solutions developed to meet their needs can have a broader impact. Cottor’s experience as a caregiver to his son informed the support he gave during his father’s recent dementia and hospice journey.
Lynn Gall is the family caregiver support and lifespan respite programs manager for the Wisconsin Department of Health Services. In addition to her professional experience working with caregivers, she was a long-distance caregiver for both parents and occasionally provided in-home care for them too. She recognizes that American families have changed a lot since the first caregiver support programs were designed. She says the 2022 National Strategy recognizes the needs of today’s caregivers and the importance of all sectors of society to work together to establish supports for the wide range of caregiving situations. This includes people caring for friends, grandchildren, or other relatives, or taking care of young and older family members simultaneously.
Felicia Gibson is an active fundraising and advocacy regional champion, former Paralysis Resource Center ambassador, and peer mentor volunteer for the Christopher and Dana Reeve Foundation. From her experience as a caregiver for her husband after he was shot, she has learned about spinal cord injuries and how much of themselves caregivers give to the service of others. She is excited to join the RAISE Family Caregiving Advisory Council to ensure that the concerns and needs of caregivers are known and addressed.
J. Neil Henderson, M.S., Ph.D., is Professor Emeritus in the Department of Family Medicine & Biobehavioral Health at the University of Minnesota Medical School. A member of the Choctaw Nation of Oklahoma, he has worked to develop memory care units in long-term care settings and dementia support groups for African American and Spanish-speaking caregivers. He is the principal author of "The Savvy Caregiver in Indian Country’s Trainer’s Manual," published by the National Indian Council on Aging. He feels the RAISE Act provides an exciting window of opportunity to impact policy and law affecting caregiver knowledge, support, and health maintenance.
Sharon L. McDaniel, Ph.D., Ed.D., MPA is the founder, president, and CEO of A Second Chance, a kinship care organization. She grew up in foster care and was a kinship caregiver for her niece and great-niece. She is a lifelong learner who brings her “intellectual curiosity” to the table. She looks forward to working with fellow council members to advance effective public policy that will lead to sustained and increased well-being for kinship caregivers.
Daniel Murphy, PMP, is a U.S. Army veteran and general manager of software and marketplace at The Helper Bees, a technology company that focuses on technology for older adults. Adopted and raised by his grandparents, Murphy saw the challenges of aging and its implications for families first-hand at a very young age. As a teenager, he was his grandmother’s companion while his aunts and uncles helped her with activities like managing finances, making health care decisions, etc. He looks forward to collaborating with federal decisionmakers to solve the challenges faced by family caregivers.
Denise Myler lives in Ammon, Idaho, and works as a “disabled advocate.” She has been a member of the Idaho Caregivers Alliance for seven years. She is a former caregiver to her mother and has also received care from family, friends, and a direct care worker. She has worked with many organizations and committees, including the Muscular Dystrophy Coordination Committee, Idaho Caregiver Alliance the Southeastern Idaho Family Caregiver Navigator Advisory Committee, Alzheimer’s Disease and Related Dementia Alliance, Consortium for Idahoans with Disabilities, and Our Care Can’t Wait Coalition, which is working to improve the direct care workforce shortage in the state.
Nancy C. Richey, B.A., was the first statewide coordinator of the Pennsylvania Office of Developmental Programs involvement in the National Community of Practice: Supporting Families Across the Lifespan. She is a council member and former council chair of the Pennsylvania Developmental Disabilities Council. The mother of a young adult son who has autism and an intellectual disability, she has advocated for decades for equality and acceptance. As a caregiver to her parents and mother-in-law, she found nothing more important than supporting those she loves. She is grateful for the spotlight RAISE is putting on the importance of supporting family caregivers more intentionally and meaningfully.
Gloria J. Sanchez has worked with older adults for the past 25 years through various organizations and chairs the Senior Advisory Committee in the City of Menifee, CA. She spent more than 15 years in the role of primary caregiver for loved ones. In each case, from diagnosis to death, Sanchez says, “My loved ones were the pilot, and I was their co-pilot.” She believes there is no greater honor than to be entrusted with the care of another human being. She is excited to serve with her fellow council members, who share the same passion and commitment to recognize and meet the needs of family caregivers throughout the nation.
Kezia Scales, Ph.D., vice president of research & evaluation, PHI, is a researcher studying the vital role and contributions of direct care workers in the current policy and practice context. She is a family caregiver for her father in addition to being a mother, stepmother, and step-grandmother. She brings to the council expertise on the paid direct care workforce and commitment to strengthening that workforce as an essential step toward creating a caregiving system that values all those who provide and receive care.
Deborah Stone-Walls, M.C., has more than 30 years experience as a direct service provider and administrator of programs serving grandparents, kinship caregivers, and family caregivers of all ages. Her grandparents and other family members helped care for her as a child, and she has provided care to her grandparents, parents, and a grandchild with a disability. She believes caregivers across the nation long for and deserve a coordinated national approach to building supports and services for caregivers. This is her second term on the council.
Jennifer L. Wolff, Ph.D., is an academic researcher at Johns Hopkins University who has devoted her professional career to the science of family caregiving research that informs evidence-based policies to better support family caregivers within systems of care delivery. She is the daughter, sister, mother, and friend of persons affected by chronic and disabling conditions. She is excited about the opportunity to contribute to translating the 2022 National Strategy into meaningful change that benefits the lives of caregiving families.
Carol Zernial, M.A., executive director of the WellMed Charitable Foundation, has worked in the field of aging for 30 years and was a caregiver for her mother and her older sister. She currently travels regularly as the primary caregiver for her 93-year-old father who lives 500 miles away. Her personal experience as a working caregiver has strengthened her interest in government and workplace policy changes to expand options and support for caregivers. As a professional, she works to lift the voices of caregivers, those receiving care, and others who are supporting the implementation of the National Strategy to Support Family Caregivers. This is her second term on the council.
- Federal members
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U.S. Department of Health and Human Services (HHS)
Administration for Children and Families (ACF): Liliana Chakrabarti
Centers for Disease Control and Prevention (CDC): Greta Kilmer, M.S.
Centers for Medicare & Medicaid Services (CMS): Jodie Sumeracki; Melissa L. Harris (Alternate)
Food and Drug Administration (FDA): Kathryn (Katie) Capanna; Diane Mitchell, M.D. (Alternate)
Health Resources and Services Administration (HRSA): Joan Weiss, Ph.D., R.N., CRNP, FAAN
Indian Health Service: Jolie Crowder, Ph.D., MSN, R.N., CCM; Michelle Archuleta (Alternate)
National Institutes of Health (NIH)/National Institute on Aging (NIA): Melissa W. Riddle, Ph.D.
Office of the Assistant Secretary for Planning and Evaluation (ASPE): Helen Lamont, Ph.D.
Office of the Assistant Secretary for Health (OASH): Jennifer Anne Bishop, ScD, MPH
Substance Abuse and Mental Health Services Administration (SAMHSA): Carol Cecil
AmeriCorps: Jan Newsome
Consumer Financial Protection Bureau (CFPB): Lisa Schifferle, J.D.
U.S. Department of Agriculture (USDA): Courtenay Simmons
U.S. Department of Education (ED): Carmen Sanchez
U.S. Department of Labor (DOL): Sarah J. Glynn, Ph.D.
U.S. Department of Veterans Affairs (VA): Jill DeBord, L.C.S.W.
RAISE Family Caregivers Act
The RAISE Family Caregivers Act, which became law on Jan. 22, 2018, directs the Secretary of Health and Human Services to develop a national family caregiving strategy. The strategy will identify actions that communities, providers, government, and others are taking and may take to recognize and support family caregivers, and will include:
- Promoting greater adoption of person- and family-centered care in all healthcare and long-term service and support settings, with the person and the family caregiver at the center of care teams
- Assessment and service planning (including care transitions and coordination) involving care recipients and family caregivers
- Information, education, training supports, referral, and care coordination
- Respite options
- Financial security and workplace issues
Full Statute - RAISE Family Caregivers Act
Resource and Dissemination Center
With support from The John A. Hartford Foundation, the National Academy of State Health Policy (NASHP) created the RAISE Act Family Caregiver Resource and Dissemination Center 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.
Previous Publications
Initial Report to Congress
On September 22, 2021, the RAISE Family Caregiving Advisory Council released its initial report to Congress. This report outlines the challenges faced by family caregivers, federal programs currently available to support them, and provides 26 recommendations for better supporting family caregivers. The recommendations will form the foundation of the National Family Caregiving Strategy, which will include action steps to increase recognition and support for family caregivers.
Advisory Council Adopts Recommendations
On November 18, 2020, the RAISE Family Caregiving Advisory Council adopted twenty-six recommendations aimed at establishing a national approach to addressing the needs of family caregivers of all ages and circumstances.
RAISE Family Caregiving Advisory Council Report: Progress Toward a National Strategy to Support Family Caregivers
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Latest Meeting
November 13, 2024
Meeting summary and recording coming soon!
Past Advisory Council Meetings
- June 2024
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On June 13, 2024, ACL hosted a joint meeting of the RAISE Family Caregiving Advisory Council and the Advisory Council to Support Grandparents Raising Grandchildren. The gathering included a review of the upcoming joint report to Congress.
- September 2023
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On Tuesday, September 19, 2023, ACL hosted a meeting focused on an analysis of public comments on the 2022 National Strategy to Support Family Caregivers and updates from federal agencies about their progress in implementing the strategy.
- July 2023
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On Thursday, July 27, 2023, ACL held a swearing in and kick-off meeting for the new RAISE Family Caregiving Advisory Council and the Advisory Council to Support Grandparents Raising Grandchildren.
- September 2022
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On September 21, 2022, the RAISE Family Caregiving Advisory Council and the Advisory Council to Support Grandparents Raising Grandchildren held their second joint meeting to announce the release of the first-ever National Strategy to Support Family Caregivers.
- January 2022
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The RAISE Family Caregiving Advisory Council and the Advisory Council to Support Grandparents Raising Grandchildren held their first joint meeting on January 25, 2022, to begin the development of the National Family Caregiving Strategy.
- September 2021
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On September 21,2021 the RAISE Family Caregiving Advisory Council convened for its ninth meeting. The primary focus of the meeting was to discuss the release and dissemination of the Initial Report to Congress on Wednesday, September 22, 2021. Representatives from the White House Domestic Policy Council and the National Alliance for Caregiving provided insight on key priorities of the administration, as well as other emerging legislative initiatives that impact family caregiving in the US, as the advisory council’s attention shifts to its next task of developing a National Family Caregiving Strategy.
- April 2021
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On April 28, 2021, the RAISE Family Caregiving Advisory Council convened for their eighth full council meeting. Alison Barkoff, Acting Administrator and Assistant Secretary for Aging, Administration for Community Living, called the meeting to order. Acting Administrator Barkoff welcomed members and other participants to the meeting, providing a detailed introduction of herself to the members while thanking them personally and collectively for the work they have done since they first met in August 2019.
Representatives from the Older Adults’ Equity Collaborative (OAEC) gave a presentation about how to ensure access and equity in aging services programs, particularly when working with caregivers. The OAEC speakers represented the following organizations:
- MHP Salud
- National Asian Pacific Center on Aging (NAPCA)
- National Indian Council on Aging (NICOA)
- National Caucus and Center on Black Aging (NCBA)
- SAGE - Advocacy & Services for LGBT Elders Center for Healthy Aging
- New York Academy of Medicine
Carol Regan, Senior Advisor at Community Catalyst and Dr. Pamela Nadash, Associate Professor in the Department of Gerontology, McCormack Graduate School at the University of Massachusetts, Boston shared their findings from the stakeholder listening sessions.
The three advisory council co-chairs facilitated a discussion about the final draft of their Report to Congress.
The meeting concluded with an expression of appreciation to advisory council members for what they have accomplished while reminding them about next steps involving development of the Family Caregiving National Strategy, which will be discussed in subcommittee meetings in May 2021.
For additional information please see the meeting summary link below.
- January 2021
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The RAISE Family Caregiving Advisory Council met virtually for its seventh meeting on January 19, 2021. The National Academy for State Health Policy provided an overview of various state Medicaid programs supporting the needs of family caregivers. Community Catalyst presented the feedback collected from family caregivers of diverse age, race, ethnicity, employment status, and family structure, with additional tailored groups such as Latinx, teen, and grandparent caregivers over the course of 15 listening sessions.
- November 2020
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On November 18, 2020, the RAISE Family Caregiving Advisory Council held a groundbreaking meeting to finalize and approve the recommendations for their report to Congress. In recognition of Caregiver Month Mike Wittke, Senior Director of Public Policy and Advocacy with the National Alliance for Caregiving, provided an overview of the Caregiver Vignette Project which highlights the stories of 27 caregivers across the Nation.
- August 2020
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On Wednesday, August 12, 2020, the RAISE Family Caregiving Advisory Council convened its fifth full council meeting via webinar. Lance Robertson, ACL Administrator and Assistant Secretary for Aging expressed gratitude to the members for the progress they have made so far on drafting the Report to Congress and the National Family Caregiving Strategy. Although Alex Azar, Secretary of Health and Human Services was not able to attend, he addressed the council via video, expressing gratitude for their diligent work in support of family caregivers, and the progress made over the past year. Helen Lamont and Katie Brandt, of the National Alzheimer’s Project Act Advisory Council, also provided an overview of the project, key similarities with the RAISE Act, opportunities, and cross-cutting recommendations to improve long term services and support for family caregivers.
- July 2020
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The RAISE Family Caregiving Advisory Council held their fourth full council meeting via webinar on July 16. ACL Administrator and Assistant Secretary for Aging, Lance Robertson, provided opening remarks for the meeting, noting, “…the level of support for caregivers has never been larger than it is now”. The speakers for this meeting provided expert insight into “Medicare and Family Caregivers” and “Medicaid and State Programs.” These presentations provided an abundance of information. Closing out the meeting, council members engaged in an interactive workshop on the initial report to Congress.
- May 2020
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The RAISE Family Caregiving Advisory Council held its third full council meeting, via webinar, on May 20th and 21st.
Please visit the links below to view the meeting agenda, presentations, live stream recording, and a summary of the meeting.
Agenda Presentation (Coming Soon) Live Stream Recording
May 20: https://www.youtube.com/watch?v=0JHuKYRSGCw
May 21: https://www.youtube.com/watch?v=6Oe4zukIGak
- February 11 - 12, 2020
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The RAISE Family Caregiving Advisory Council held its second full council meeting via webinar on February 11th and 12th.
- August 28 - 29, 2019
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RAISE Family Caregiving Advisory Council
The first Family Caregiving Advisory Council meeting took place August 28-29, 2019, in Washington, DC.
Please visit the links below to view the live stream recording and other meeting materials.
Agenda
Family Caregiving Advisory Council (FCAC) Meeting (PDF 454kb)
Meeting Pictures
RAISE Council Photos RAISE and SGRG Joint Session Photos
Resources and Materials
Annotated Resources (PDF 150kb) Materials (PDF 318kb)
Meeting Summary
RAISE Family Caregivers Act Council Meeting Summary (DOCX 96kb)
Live Stream Recordings
Family Caregiving Advisory Council (FCAC)
August 2019 | Day 1, Part 1 Family Caregiving Advisory Council (FCAC)
August 2019 | Day 1, Part 2 Family Caregiving Advisory Council (FCAC)
August 2019 | Day 1, Part 3 Family Caregiving Advisory Council (FCAC)
August 2019 | Day 1, Part 4 Family Caregiving Advisory Council (FCAC)
August 2019 | Day 2, Part 1 Family Caregiving Advisory Council (FCAC)
August 2019 | Day 2, Part 2