Although it has not garnered a lot of media coverage, the U.S. Department of Health and Human Services (HHS), through its Administration for Community Living (ACL), has in place a “National Strategy to Support Family Caregivers” (NSSFC). It was originally launched in the fall of 2022 with a goal of highlighting nearly 350 actions the federal government would take to support family caregivers in the ensuing year and more than 150 actions that could be adopted at other levels of government and across the private sector to build a system to support family caregivers.
The strategy was developed jointly by the advisory councils established by the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (2017) and the Supporting Grandparents Raising Grandchildren (SGRG) Act (2018) with extensive input from family caregivers and the people they support. The ACL was tasked with leading implementation of the RAISE and SGRG Acts and facilitates the work of the two advisory councils.
Goals of the national strategy to help Colorado Family Caregivers
The ACL laid out an ambitious series of targeted actions for the NSSFC, organized under five main goals as follows:
GOAL 1: Increase awareness and outreach
• Education and awareness campaigns for professionals and the public
• Increased caregiver self-identification
• Culturally competent outreach to unserved and underserved caregivers
• Inclusion of family caregivers in state, territorial, tribal, and local planning
• More public-private partnerships that drive family caregiver support
GOAL 2: Build partnerships and engagement with family caregivers
• Use evidence-based tools to assess and capture family caregiver needs and preferences
• Recognition of family caregivers as essential care team partners
• Inclusion of family caregivers in care plans
• Consideration of family caregivers during policy changes
• Training for professionals on ways to interact with family caregivers
GOAL 3: Strengthen services and supports
• Increased person- and family-centered, trauma-informed, and culturally competent services
• Flexible and accessible respite care
• Education, counseling, and peer support
• Access to safe homes, nutritious meals, transportation, and technology
• Leverage volunteers for family caregiver support
• Family caregivers’ and care recipients’ needs addressed in emergency response
• Resources to improve planning for future care needs
• Increased support for the direct care workforce
• A child welfare system that recognizes kin- and grandparent-led families
GOAL 4: Ensure financial and workplace security
• Financial planning specifically for family caregivers
• Employee-centered, flexible workplace policies and practices
• Help with planning for long-term needs of care recipients
• Affordable long-term services and supports
GOAL 5: Expand data, research, and evidence-based practices
• Shared data systems with consistent data sets
• More research on practices that benefit family caregivers
• Translation of research into interventions to support family caregivers
The critical role of family caregivers in Colorado
“At some point in our lives, most of us will either be a family caregiver or need one,” said Acting ACL Administrator and Assistant Secretary for Aging Alison Barkoff. “Many of us will experience both.” “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. ACL is proud to help lead that work.”
At the time the strategy was launched, HHS noted that family caregivers provide the overwhelming majority of long-term care in the U.S. but lack resources to maintain their health, wellbeing, and financial security while providing crucial support for others. “Supporting family caregivers is an urgent public health issue,” HHS Secretary Xavier Becerra said. “This national strategy recognizes the critical role family caregivers play in a loved one’s life.”
Caregiving stats nationally and in Colorado
HHS went on to point out that 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 each year look after 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,” HHS stated, “and replacing it with paid services would cost an estimated $470 billion each year.” HHS added that lost income due to family caregiving is estimated at $522 billion each year. Plus, when caregiving challenges become overwhelming and family or others can no longer provide support, the people they care for often are left with no choices except moving to nursing homes and other institutions, with costs often borne by taxpayers.
AARP, an AgeWise Colorado Provider, said its research shows that in 2021, 600,000 family caregivers in Colorado provided 560 million hours of unpaid caregiving valued at an estimated $11.2 billion. Also, its survey of 700 Colorado residents age 45 and up found that fully two-thirds were providing unpaid care to an adult relative or friend or had done so in the past. The need for family caregivers is only expected to grow, AARP said, because census data shows the number of Coloradans age 65 and older increased by nearly 60% between 2010 and 2020 while the population as a whole grew by about 15%.
HHS says the national strategy represents the first time a broad cross-section of the federal government has collaborated with the private sector on a response to the longstanding national need for a comprehensive system of family caregiver support.
Colorado Caregivers …“Standing in the health care gap”
“Supporting family caregivers is commonsense,” said CMS Administrator Chiquita Brooks-LaSure, “since most people will at some point in their lives be a family caregiver, need a family caregiver, or both. Caregivers are sacrificing for their loved ones and often are standing in the health care gap by providing that care. Many of the more than 150 million people who receive health care coverage through Medicare, Medicaid, and the Health Insurance Marketplaces rely on trusted friends and family for care. CMS is committed to advancing home and community-based services and other forms of caregiver support across the lifespan to give caregivers the recognition and resources they need and deserve.”
Office for Civil Rights Director Melanie Fontes Rainer echoed such viewpoints, saying, “Family caregivers play a vital role in supporting people with disabilities and older adults so they can live and thrive in their own homes and communities, and it is time that we take action to champion them. The National Strategy to Support Family Caregivers is a concrete step toward making the right to community living a reality for all people.”
The strategy reportedly will be updated every two years. The updates will be based on public input, as well as the continued work of the advisory councils and communities, states and tribes, and federal agencies that are developing, implementing, and adapting policies and programs to support family caregivers.
National Family Caregiver Support Program might also help Coloradans
A separate program established in 2000, the National Family Caregiver Support Program (NFCSP), provides grants to the states based on their share of the population age 70 and over, to fund a range of supports that assist family and informal caregivers to care for their loved ones at home for as long as possible.
ACL says by creating the NFCSP, Congress recognized the important role that family caregivers occupy in our nation’s long-term services and supports system. As of the 2016 Reauthorization of the Older Americans Act, the following specific populations of caregivers are eligible to receive services:
- Adult family members or other informal caregivers age 18 and older providing care to individuals 60 years of age and older.
- Adult family members or other informal caregivers age 18 and older providing care to individuals of any age with Alzheimer’s disease and related disorders.
- Older relatives (not parents) age 55 and older providing care to children under the age of 18.
- Older relatives, including parents, age 55 and older providing care to adults ages 18-59 with disabilities.
The goal of the NFCSP is to provide services to caregivers of older adults, as well as grandparents over age 60 raising grandchildren. Services provided through the NFCSP fall into five categories:
- Information to caregivers about available services.
- Assistance to caregivers in gaining access to supportive services.
- Individual counseling, organization of support groups, and caregiver training to assist the caregivers in making decisions and solving problems relating to their caregiving roles.
- Respite care to enable caregivers to be temporarily relieved from their caregiving responsibilities.
- Supplemental services, on a limited basis, to complement the assistance provided by caregivers, including home modifications, assistive technologies, emergency response systems, and equipment/supplies.
For more information on Caregiving topics . . .
Learn more about the National Strategy to Support Family Caregivers at: https://acl.gov/CaregiverStrategy.
Link to AgeWise Colorado Providers who offer caregiver help by entering “caregivers” in the search field on our website (click on the magnifying glass)
Coloradans can also find links to family caregiver resources in the state at https://states.aarp.org/colorado/caregiver-resources. For information on Colorado’s services for older adults, see https://cdhs.colorado.gov/our-services/older-adult-services.
Learn more about the National Family Caregiver Support Program at https://acl.gov/programs/support-caregivers/national-family-caregiver-support-program. Or contact your local Area Agency on Aging or call 303.866.2800 or 1.888.866.4243.
And if it is of interest to you, AARP offers a Prepare to Care Guide at https://learn.aarp.org/prepare-to-care-guide.
