Family caregivers – who provide the overwhelming majority of long-term care in the United States – often lack resources to maintain their health, well-being, and financial security while providing crucial support for others. The U.S. Department of Health and Human Services (HHS), through its Administration for Community Living (ACL), released the 2022 National Strategy to Support Family Caregivers.
The strategic plan highlights 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 build a system to support family caregivers.
Each year, around 53 million people provide a broad range of assistance to support the health, quality of life, and independence of a person close to them who needs assistance as they age or due to a disability or chronic health condition. Another 2.7 million grandparent caregivers – and an unknown number of other relative caregivers – open their arms and homes each year to millions of children who cannot remain with their parents. Millions of older adults and people with disabilities would not be able to live in their communities without this essential support – and replacing it with paid services would cost an estimated $470 billion each year.
While family caregiving is rewarding, it can be challenging, and when caregivers do not have the support they need, their health, well-being, and quality of life often suffer. Their financial future can also be put at risk; lost income due to family caregiving is estimated at $522 billion each year. When the challenges become overwhelming and family caregivers no longer can provide support, the people they care for often are left with no choices except moving to nursing homes and other institutions or to foster care – the cost of which is typically borne by taxpayers.
“At some point in our lives, most of us will either be a family caregiver or need one. Many of us will experience both,” said Acting ACL Administrator and Assistant Secretary for Aging Alison Barkoff, in a statement. “This strategy presents a vision, along with recommendations for achieving it. Bringing that vision to life will require contributions and commitments from every sector, every level of government – and all of us – and ACL is proud to help lead that work.”
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.
Below are seven examples of actions suggested by participating federal agencies. These examples show the breadth of the federal commitment to improving support of family caregivers in the coming years and reinforce the Advisory Councils’ belief that all government agencies have a role to play in supporting family caregivers. Combined with initiatives taken at the state, community, and organizational level, each of these actions, regardless of how small, has value as part of a national effort to change culture and systems over time.
• The Administration on Community Living (ACL) will continue to lead the RAISE Family Caregiving Advisory Council and the Supporting Grandparents Raising Grandchildren (SGRG) Advisory Council and support the implementation of the Strategy.
• The Centers for Disease Control and Prevention (CDC) will annually update and publish data from the Behavioral Risk Factor Surveillance System’s (BRFSS) Caregiver module and post that information on the Alzheimer’s Disease and Healthy Aging Data Portal.
• The Department of Veterans Affairs (VA) Caregivers’ Support Program will develop a survey tool to conduct a needs assessment for providers and practitioners to help identify and bridge gaps in existing services and resources.
• The Department of Health and Human Services (HHS) Assistant Secretary for Planning and Evaluation (ASPE) will assess the future risk of disability on a population level and how that affects needs for support, family caregiving, and paid long-term services and supports (LTSS).
• The Indian Health Service (IHS) will add structured fields in its electronic health record (EHR) to identify patients’ kin and grandparent caregivers.
• The Department of Labor’s (DOL) Women’s Bureau (WB) will fund educational opportunities for low-paid and otherwise marginalized women workers, including employed family caregivers. These programs will focus on topics such as employment rights, navigating and calculating benefits, and referrals to additional services and benefits as needed, with a goal to help women become local experts on caregiver rights, benefits, and assistance in their own communities.
• The National Institute on Aging (NIA) will initiate a public/private partnership to integrate data on Alzheimer’s disease and related dementia (ADRD) and caregiving to include caregivers and their experiences in clinical protocol, care teams, medical records, and other aspects of clinical infrastructure.
• The Disabled & Elderly Health Programs Group (DEHPG) within the Centers for Medicare & Medicaid Services (CMS) will identify and report by fall 2023 on the ways state Medicaid agencies have expanded access to respite services under Medicaid through Section 9817 of the American Rescue Plan (ARP) of 2021.
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. The Administration for Community Living at U.S. Health & Human Services leads implementation of the RAISE Act and SGRG Act and facilitates the work of the two advisory councils.
“The importance of relatives and kinship caregivers and their role in helping children thrive cannot be understated,” said January Contreras, Assistant Secretary for the Administration for Children and Families (ACF), in a statement. “ACF welcomes this National Strategy because it amplifies the actions we can take to support kinship families, and it reflects what we hear every day from caregivers and children living with relatives. Across the country, a child’s ability to rebound from a traumatic experience is often dependent on the swift and loving support from a kinship caregiver. This ACL National Strategy provides a roadmap to support them.”
The 2022 National Strategy to Support Family Caregivers was delivered to the U.S. Senate Committee on Health, Education, Labor and Pensions, the U.S. House Committee on Education and Labor, and to the state agencies responsible for carrying out family caregiver programs. The strategy will be updated every two years, as required by the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act of 2017 (Public Law 115-119).