Building the Power of Family Caregivers in the Movement for Health Justice
Family caregivers are often overlooked and undervalued in our society – we’re working to change that.
“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.”
Every day, millions of people in communities across the country care for their loved ones who are living with chronic diseases, disabilities or, for many people, both. To date, 58 million people in the U.S. are family caregivers and The Centers for Disease Control and Prevention projects that the need for family caregivers will grow – the ratio of family caregivers to older adult is currently 7:1 but it is estimated that by 2030 there will be only 4 potential family caregivers per older adult.
Despite the growing need for caregivers, the long-term services and supports they provide are often overlooked and undervalued, with the lack of supports having a disproportionate impact on low-income communities, LGBTQ+ communities and communities of color. Due to structural racism, classism and other forms of oppression in our society, research shows that Hispanic and Black caregivers experience higher burdens and spend more time caregiving. These discrepancies have illuminated the need for additional engagement specifically focused on family caregiving in communities of color, linguistically diverse communities, immigrant communities, and LGBTQ+ communities across the country.
“A systemic change is needed where families and caregivers are provided supports and resources to improve the health outcomes of children and adults with medical complexities and/or intellectual disabilities and the quality of life for the entire family.” – Nancy Giurato, family caregiver advocate
The Center for Community Engagement In Health Innovation (the Center) at Community Catalyst has heavily invested in family caregiving work that is deeply rooted in community engagement, with key findings from our listening sessions going on to inform the creation of the RAISE National Strategy to Support Family Caregivers (National Strategy). The National Strategy is at the forefront of national efforts to shape local, state and federal policy solutions, as well as system-level changes. It will also provide responsive support systems that truly address the unmet needs of family caregivers across the country. Including almost 500 actions that can be implemented at every level of government and across the public and private sectors, the National Strategy will lead national efforts to create resources and more responsive systems to support family caregivers in their health, well-being and financial security.
From the Center’s years of experience working with a dynamic network of advocates across the country to foster connections, improve systems, and bring community-led and person-centered health innovation concepts to life, we have built up an established network of trusted partners and community connections. Using the National Strategy as a roadmap, our family caregiving work is grounded in storytelling, strategic partnership, education, and power-building to ensure greater recognition, support, and inclusion of family caregivers of all ages in diverse communities across the country.
Our Key Principles for Family Caregiving Support
Funded by the ACL and in partnership with the LeadingAge LTSS Center @ UMass Boston, we will develop, test and disseminate new approaches for supporting family caregivers, using the National Strategy as a roadmap. Our work will address Goal 1 of the National Strategy by advancing policy and practice level changes in nine states that will:
- Increase awareness of family caregiving issues and;
- Increase engagement of family caregivers in decision-making.
Additional partners include: Caregiver Coalition of Northeast Florida, Georgians for a Healthy Future, Idaho Caregiver Alliance, Maine People’s Resource Center, Massachusetts Healthy Aging Collaborative, The Negative Space, New Mexico Caregiver Coalition, Oklahoma Caregiver Coalition (OK Cares), TN Caregiver Coalition
Get Involved
If you or someone you know is currently, or was previously, providing daily living assistance to someone living with a chronic health condition, disability, or both — we want to hear from you!
Help us build a more powerful movement for health justice and share your story today.
Resources
American Rescue Plan Act
The Future of Long-Term Service and Supports: A Look at Massachusetts
Profiles in Caregiving: Nancy Giurato
Centering Perspectives of Dually Eligible Older Adults of Color
