The Administration for Community Living’s (ACL) new groundbreaking National Strategy to Support Family Caregivers, marks the first time the federal government has collaborated with the private sector to address the longstanding national need for a comprehensive system of family caregiver support.
The comprehensive strategy, announced during a Sept.21 webinar, is a joint effort between the Recognize, Assist, Include, Support, and Engage (RAISE) Act Family Caregiving Advisory Council and the Advisory Council to Support Grandparents Raising Grandchildren (SGRG) with technical support from ACL. It also includes extensive input from family caregivers, the people they support, and other stakeholders and builds on the initial reports the RAISE and SGRG councils delivered to Congress in 2021.
“Supporting family caregivers has been an urgent public health issue, and COVID made that very clear,” said Secretary of Health and Human Services Xavier Becerra during the webinar. “With this roadmap in place, boy can we launch. I’m thrilled to be able to say that we have taken the steps that are necessary to ensure that we will provide this support to our families as they are needed.”
Until now, there has been no national approach to recognize and support the more than 53 million family caregivers and more than 2.7 million grandparent and kinship caregivers, according to ACL. Caregivers include people of all ages: youth to grandparents with and without disabilities, people providing care from a distance, and those meeting a wide variety of needs.
“The development of the strategy is such a significant milestone in our national efforts to improve the way we support family caregivers. But this is just the beginning. It is a vision along with recommendations, but it is going to be up to us to translate this into action,” said Alison Barkoff, acting administrator and assistant secretary for aging for ACL.
The need for comprehensive caregiver support
When formal systems of caregiving break down (as we saw during the COVID-19 pandemic) or are not available, family caregivers step in — often on short notice — and cover whatever is needed: meals, transportation, chores, personal care, education, medical tasks, administrative assistance, language translation, and even IT support, the report said. This includes older adults, those with chronic health conditions or adults and children with intellectual or developmental disabilities (ID/DD), as well as children in the full-time care of grandparents or other relatives, veterans with injuries or chronic conditions, medically fragile children or adults, or those with Alzheimer’s or other dementias.
While family caregiving can be rewarding and personally satisfying, it often comes at significant personal cost to the caregiver, financially, physically, and emotionally. For example, family caregivers lose an estimated $522 billion in wages each year due to caregiving, according to a RAND study, and employers are losing an estimated $33 billion per year due to employees’ caregiving responsibilities, the report said. Studies show informal caregivers also suffer from higher rates of depression and anxiety and reduced quality of life than non-caregivers of the same age.
The National Strategy was developed to align federal, state, tribal, local, and other stakeholder responses around a set of goals and outcomes, foster collaborations within and across stakeholder groups, optimize existing family caregiver support efforts by reducing redundancy, improving information sharing, infusing best practices systemwide and prioritizing efforts to advance equity for unserved and underserved populations of caregivers.
The National Strategy proposes five main goals:
- Increase awareness and outreach
- Build partnerships and engagement with family caregivers
- Strengthen services and supports
- Ensure financial and workplace security
- Expand data, research, and evidence-based practices
These goals encompass some 350 actions that 15 federal agencies will take in the next three years, and also include specific actions that states, communities, health care systems, long-term support and service providers, researchers, employers, philanthropic organizations, and others can take. For example, the Department of Labor’s Women’s Bureau will award grants to provide education to marginalized women workers about their rights and benefits. And the Consumer Financial Protection Bureau will increase the use of financial education tools for caregivers, such as the cost of long-term care and how to provide it.
Journalists may want to pay particular attention to the section on Actions for States, Communities, and Others which includes more than 150 suggested actions for states, communities, and other public and private stakeholders can take. Among them:
- Raising awareness
- Educating employers
- Strengthening local caregiver services and supports
There are also links to caregiver stories, which may help boost your reporting.
“When family caregivers do not have training, support, and opportunities for rest and self-care, their own health, well-being, and quality of life suffer. Their financial future can also be put at risk. When 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,” according to the report.
Who are family caregivers?
The RAISE Family Caregivers Act defined a “family caregiver” as “an adult family member, or other individual who has a significant relationship with and who provides a broad range of assistance to an individual with a chronic or other health condition, disability or functional limitation .” In its initial report to Congress, the RAISE Advisory Council expanded that definition slightly to include unpaid people of all ages in its definition. The SGRG Advisory Council defined “kin and/or grandparent caregiver” as any grandparent or relative adults who have primary responsibility for grandchildren or other children who cannot remain with their parents. This report includes anyone who meets these definitions.
The strategy is focused solely on the populations and issues addressed by the RAISE Family Caregiving Act and the Supporting Grandparents Raising Grandchildren Act; it does not address every type of caregiving situation, the report noted. This project was supported by several foundations, including the John A. Hartford Foundation, which also supports AHCJ’s aging core topic area.