Building the Next Generation of Family Caregiver Leaders

Photo Credit: Pexels

Led by the Center for Consumer Engagement in Health Innovation at Community Catalyst, the LTSS Center @UMass Boston, and Grantmakers In Aging (GIA), the Changing the Care Conversation project is a national learning and action-oriented initiative to improve support for family caregivers of older adults and people with disabilities, especially those with low and moderate incomes and caregivers of color.

This project comes at a pivotal time in our country. More than one in five people in the United States are family caregivers. Family caregivers cut across sex, sexual orientation, gender identity, race, ethnicity, income levels, and geographic residence; but, all provide largely unpaid and unsupported care to someone in their lives. Family caregiver advocate and former First Lady Rosalynn Carter summarized the nation’s need for care in this way: “I like to say that there are only four kinds of people in the world- those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.” Family caregiving is a vital resource for the nation despite the fact that we have underinvested in caregiving and undervalued caregivers for decades. There is a strong need for a transformative investment in the current support systems.

There are many state and national efforts underway to address these issues. For instance, the American Rescue Plan Act (ARPA) provided a temporary increase in the federal match for certain Medicaid home and community-based services (HCBS) spending that would benefit Medicaid-eligible older adults and people with disabilities. Congress is considering a legislative package that includes billions of additional dollars for expanding access to HCBS. As required by the RAISE Family Caregivers Act, stakeholders are developing recommendations and an action plan for a national strategy on caregiving. 42 states, plus the District of Columbia, Puerto Rico, and the U.S. Virgin Islands have passed the Caregiver Advise, Record, Enable (CARE) Act, which tasks health systems with better integration and training of family caregivers.

There is great opportunity to leverage this momentum, but meaningful solutions – to the lack of caregiver support – can only be assured and deemed effective when caregivers themselves are included in decision-making and policymaking. To bring more caregivers to the table, we are partnering with 10 state-based family caregiving coalitions to build the coalition and grassroots power of a diverse group of family caregivers that will advance state and federal policy solutions that strengthen supports for family caregivers. Through technical assistance and a series of interactive workshops, the coalitions will engage and empower caregiver leaders to advocate for state and/or federal policies that improve the lives of caregivers and those they care for.

We are looking forward to supporting and highlighting all 10 of our state coalitions’ work to advance support for family caregivers. We encourage our partners and supporters to follow our state coalitions as they build their cohorts of caregiver leaders! Below is a list of participating coalitions and briefly what they will be focused on:

  • Aging Services Council of Central Texas will build the coalition and grassroots power of a diverse group of family caregivers to advance state and federal policy solutions that strengthen support for family caregivers.
  • Arizona Caregiver Coalition will work to develop a Steering Committee to lead the development of the Arizona State Plan on Caregiving.
  • Family Caregiving Collaborative in Utah will focus on recruiting and training caregivers to serve as the Utah Family Caregiver Advisory Board. This Advisory Board will work alongside FCC and the existing multi-stakeholder committee in the creation of and advocacy for the Utah State Plan for Family Caregiving.
  • Hawaii Family Caregiver Coalition will work to build the leadership of caregivers to engage in advocacy efforts. They will place a special emphasis on recruiting Native Hawaiian caregivers for leadership roles.
  • Illinois Aging Services will engage caregivers in the Illinois Family Caregiver Coalition, they will also play an active role in outreach and public awareness to spread the word about resources for caregivers and will participate in advocacy efforts.
  • New York State Caregiving and Respite Coalition will engage caregivers in the development of a legislative sub-committee for the Coalition Advisory Board, collaborate with NYS organizations to support policy agendas and Develop an annual advocacy agenda and strategic legislative action plan.
  • North Carolina Coalition on Aging will focus on developing a diverse corps of caregiver champions, produce Caregiver Voices video series, and convene a virtual caregiver policy summit.
  • Southeast Michigan Senior Regional Collaborative will focus on building a regional family Caregiver coalition that acknowledges the cultural diversity (along with the overall diversity) of caregivers in southeast Michigan.
  • University of Southern California Family Caregiver Support Center will use a multi-pronged approach to build the leadership of caregivers to engage in advocacy efforts.
  • Wisconsin Aging Advocacy Network will engage caregiver leaders in the state’s aging services plans, which include specific goals around advocacy efforts and diversity, equity, and inclusion. Caregiver leaders will engage by sharing their caregiver experiences to impact policy.

We are thankful to the following foundations for their support: Archstone Foundation, Health Foundation for Western and Central New York, Ralph C. Wilson, Jr. Foundation, RRF Foundation for Aging, St. David’s Foundation

For more information about this project, please contact Siena Ruggeri at sruggeri@communitycatalsyt.org.

More about our project partners:

Grantmakers In Aging (GIA) As a national membership organization of philanthropies, GIA serves as a network and resource for funders, and a champion for aging-related issues and investments. Through Funders Communities, GIA convenes funders with common interests to share promising practices and maximize impact. The consortium of funders investing in Changing the Care Conversation emerged from GIA’s Family Caregiving Funders Community, a robust network of 40 foundations working to mobilize intellectual and financial capital to improve the caregiving experience.

The LTSS Center @UMass Boston (The LTSS Center) conducts research designed to help our nation address the challenges and seize the opportunities associated with a growing older population. The LTSS Center’s primary goal is to translate research into policy and practice so its work can serve as a foundation for government policies and provider actions to improve quality of care and quality of life for vulnerable older adults.