Health Coverage and Care for Caregivers
Caregivers are often overlooked and undervalued in our society – we’re working to change that.
Every day, millions of people in communities across the country care for those living with chronic diseases, disabilities, or for many people – both. Caregivers – whether family caregivers, paid workers like direct care workers, home health care aides, nursing assistants, or people who work in residential nursing homes – are doing critical work in our communities and playing key roles in the health justice movement. They provide lifesaving care and allow people with disabilities, older adults and their families to lead full lives – this is especially critical as care is harder to find than ever.
“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.”
Despite the growing need for caregivers, the long-term support services they provide are often overlooked and undervalued — evidenced by the lack of policies that support them like Medicaid expansion, permanent enhanced tax credits, and higher wages.
150,000 caregivers don’t have access to care they need in non-Medicaid expansion states
Our report, Closing the Coverage Gap: Medicaid Expansion and the Direct Care Workforce, shows that nearly 150,000 caregivers don’t have access to the care they want and need in the 10 states that haven’t expanded Medicaid alone. Empowering the direct care workforce is critical in the fight for health and economic justice reflecting that the workforce is 67% people of color and 84% women. And due to structural racism, classism, and other forms of oppression in our society, research shows that Hispanic and Black family caregivers experience higher burdens and spend more time caregiving. These discrepancies have illuminated the need for additional engagement focused on caregiving in communities of color, linguistically diverse communities, immigrant communities, and LGBTQ+ communities across the country.
For caregivers to be able to care for others, they need care themselves. That’s why Community Catalyst is working with state, local, and national partners to push for more engagement and powerbuilding within caregiving communities that will result in additional supports and resources, like expanded health coverage and care that works for caregivers nationwide.
Learn more about the movement to support care workers in the Medicaid coverage gap.
Learn more about the movement to support care workers in the Medicaid coverage gap.
Learn more about the movement to support care workers in the Medicaid coverage gap. (Opens in new tab)
Improving Systems to Support Family Caregivers
In the U.S. alone, over 53 million people are family caregivers, and The Centers for Disease Control and Prevention projects that the need for family caregivers will only grow. The ratio of family caregivers to older adult is currently seven to one, but it is estimated that by 2030 there will be only four potential family caregivers per older adult.
Through our Health System Innovation strategic initiative, Community Catalyst has heavily invested in family caregiving work that is deeply rooted in community engagement. The key findings from our listening sessions directly informed 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 includes almost 500 recommendations for actions that can be implemented at every level of government and across the public and private sectors, and currently serves as a framework for leading work aimed at creating additional resources and improving systems to fully support family caregivers in their health, well-being, and financial security.
From Community Catalyst’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 powerbuilding 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 Administration for Community Living and in partnership with the LeadingAge LTSS Center @UMass Boston, Community Catalyst and our partners 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, New Mexico Caregiver Coalition, Oklahoma Caregiver Coalition (OK Cares), Liberty Resources and the 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.
This project is supported by the Administration for Community Living (ACL) and the U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $5,333,332 with 75% funded by ACL and HHS and $1,333,332 amount and 25% funded by non-government sources. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by, ACL, HHS, or the U.S. Government.
Resources
Building the Next Generation of Family Caregiver Leaders
Profiles in Caregiving: Nancy Giurato
The Future of Long-Term Service and Supports: A Look at Massachusetts
American Rescue Plan Act
