Are you aware of the 2022 National Strategy to Support Family Caregivers?
Strategy Background
A comprehensive plan of action, the 2022 National Strategy to Support Family Caregivers, was developed jointly by the Advisory Councils established by the RAISE (Recognize, Assist, Include, Support and Engage) Family Caregiving Act and the Supporting Grandparents Raising Grandchildren Act. They had extensive input from family caregivers, the people they support and other stakeholders. It took several years of focused effort to develop. It contains close to 500 steps that can be undertaken by government, public, and private sectors to promote the physical and financial well-being of family caregivers. The strategy is the culmination of input and hard work from numerous interest groups including: service providers, advocates, policy makers, philanthropic organizations, family caregivers and care recipients. Participants include over 150 organizations spanning both the private and non-profit sectors, as well as numerous federal agencies.
Strategy Content
Before we delve into the substance of this strategy, let’s begin with a little quiz.
Question: What group of people currently provide the bulk of long-term caregiving services in this country?
Answer: Unpaid Family caregivers
Are you surprised by the answer to this question? If so, you are not alone. It’s safe to say that most people believe that the majority of long-term care services in the U.S. are provided by nursing home facilities and other similar institutions. A large part of this public misperception can be attributed to the relatively “invisible” roles of unpaid family caregivers whose unsung contributions furnish invaluable support (financial, physical and emotional) to aging and disabled loved ones. From a financial perspective, if family caregivers were paid for the services they provide, it would cost an astounding $600 billion dollars each year. Also, lost income due to family caregiving is estimated at $522 billion each year.
There are at least 53 million family caregivers in this country (according to the National Alliance for Caregiving and AARP) at various stages of life, providing a diversity of activities to sustain their loved ones within their communities. Therefore, it was clear that a systemic approach to developing and implementing solutions was required. As a result, the strategy identifies the following five goals as a framework for the action steps it recommends:
“Align federal, state, tribal, local, and other stakeholder responses around a set of goals and outcomes that are informed by thoughtful recommendations.
Foster collaborations within and across stakeholder groups.
Optimize existing family caregiver support efforts by reducing redundancy, improving information sharing and infusing best practices systemwide.
Prioritize efforts to advance equity for unserved and underserved populations of caregivers.
Ensure that all efforts to uplift caregivers are person-and family-centered, trauma informed, and culturally competent.”
Within its more than 100 pages, this strategy contains recommendations for better use of evidence-informed approaches, data and research in the field; decreasing financial difficulties family caregivers face; and increasing services, inclusion, awareness and outreach. The strategy also contains input from family caregivers and care recipients themselves regarding why they feel more needs to be done to support them.
It is important for us to acknowledge that the developers of this strategy noted in their presentation to Congress that this document is just a “beginning.” Their call-to-action suggested that this strategy be supported by targeted legislation and policy changes to help address the issues around family caregiving. Although the list is too extensive to be included in-full here, some policy change suggestions include:
“Increase funding for state, territorial, tribal, and local health departments to systemically embed family caregiving into public health infrastructure and planning
Include family caregiver out-of-pocket care expenses (products and services) as medical expenses eligible for tax credits
Allow family caregivers who leave the workforce for caregiving to accrue Social Security credits to qualify for Social Security Benefits
Launch a national public long-term care social insurance program that includes benefits for kin and grandparent caregivers”
You can read more about the 2022 National Strategy to Support Family Caregivers here: https://acl.gov/sites/default/files/RAISE_SGRG/NatlStrategyToSupportFamilyCaregivers.pdf
2024 Progress Report to Congress
On September 17, 2024, a Progress Report was issued to Congress detailing implementation efforts around the 2022 National Strategy to Support Family Caregivers. There is good news and good news! First, as the strategy intended, all government branches, stakeholder interest groups, advocates, family caregivers and care recipients have joined together to form collaborations and partnerships to gain momentum in moving the strategy toward its goals. Second, almost all of the 350 actions that federal agencies committed to under the initial strategy have been accomplished or are in progress, and they have committed to an additional 40 actions since the 2022 strategy release.
As stated by the U.S. Department of Health and Human Services Secretary, Xavier Becerra, these new initiatives “represent real change and real improvement in the lives of family caregivers.” After all, the overall purpose and focus of this national strategy is to provide needed support to this vital segment of the U.S. healthcare system. Without needed support for family caregivers, the care crisis in this country will only get worse as our aging population continues to grow and the population of professional caregivers to care for them continues to decline.
A detailed list of strategy accomplishments to-date would be much too lengthy to present in this short blog, however a few highlights include:
Ensuring that any new state plans around aging help to advance and reflect directives in the strategy
Funding for technical assistance to support strategy implementation
2024 Physician Fee Schedule includes Medicare payment for family caregiver training
New data collection by the CDC on family caregivers
Funding to support research around the experiences of family caregiving for individuals with Alzheimers and other dementias
Also, policy initiatives designed to strengthen the care infrastructure, expand access to community-based and home services, growing the direct care workforce and making quality child care more affordable and more available are key contributions as well.
You can read more about the 2024 Progress Report: Federal Implementation of the 2022 National Strategy to Support Family Caregivers here:
https://acl.gov/sites/default/files/2024ProgressReport_StrategyToSupportCaregivers.pdf
Summary
The 2022 National Strategy to Support Family Caregivers was developed by its many stakeholders as a living document. It is subject to revision and fine-tuning to meet the increasing demands presented by the caregiver crisis as this crisis continues to impact family households and businesses across the country. This breakthrough document represents the first time that nonprofits and state agencies have joined together to provide recommendations to the federal government on the issue of family caregiving. The development of these recommendations also represents the first time that various federal government agencies have joined together to address family caregiver support planning.
Importantly, future updates to the strategy will include a look at emerging policy considerations that affect family caregivers and their care recipients, recommendations for new actions for all sectors as well as an analysis of the effect of the strategy. We look forward to revisiting this critical body of work down the road. The goal is to help move this strategy toward successes that are far-reaching and sustainable. Meanwhile, we leave you with a statement made by a participant during one of the strategy listening sessions who stated:
“As more data emerges to show that caregivers are kick ass people and that they are really good workers…the education goes up, the stigma goes down and we start making some headway.”
Until the next blog. Thank you for stopping by, reading, and for caring!