2022 National Strategy to Support Family Caregivers

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Actions for States, Communities, and Others

Introduction & Purpose

This document is a component of the 2022 National Strategy to Support Family Caregivers (Strategy), which was developed by the Recognize, Assist, Include, Support, and Engage (RAISE) Act Family Caregiving Advisory Council and the Advisory Council to Support Grandparents Raising Grandchildren (Advisory Councils). It contains more than 150 suggested actions that states, communities, and other public and private stakeholders can take to holistically recognize, assist, include, support, and engage family caregivers in support of the Strategy. The actions were developed by members of the Advisory Councils in early 2022, based on the following:

  1. During focus groups and caregiver interviews, family caregivers shared stories of their own experiences. Those stories informed the Strategy at every stage of its development, including to inspire many of the actions suggested in this document.
  2. ACL published two requests for information (RFIs) in the Federal Register asking caregivers to express a need/concern, recommend a solution, and select from a list of issue areas that were important to them.
    • The RAISE Family Caregiving Act RFI received 1,613 unique responses, three-quarters of which were from family caregivers.
    • The SGRG Act RFI received 307 unique responses, half of which were from kin, grandparent, non-relative, and/or foster family caregivers.
  3. Early in its work, the RAISE Family Caregivers Act Advisory Council created diagram that categorized multiple factors (drivers) that would affect the overall vision and goals of the council. This driver diagram became an internal planning tool during council discussions. This tool enabled the Advisotu Councils to identify and categorize multiple factors that would achieve the overall vision and the goals of the council
  4. In 2020, the National Academy for State Health Policy (NASHP), under a three-year grant from The John A. Hartford Foundation (JAHF), collected and analyzed more than 800 recommendations from 27 key family caregiving reports written in the past decade. NASHP synthesized and inventoried the recommendations. The resulting document, Inventory of Key Family Caregiver Recommendations, assisted the RAISE Act Family Caregiving Advisory Council in its recommendations to Congress.
  5. NASHP, also with support from JAHF, commissioned Community Catalyst and UMass @Boston to undertake a series of 16 listening sessions and 17 key informant interviews with over 150 stakeholder organizations, including family caregivers, advocacy groups, and other entities with a role in supporting family caregivers. These interviews resulted in 50 hours of input from a wide array of voices. Community Catalyst and UMass @Boston also hosted 12 listening sessions with a total of 80 family caregivers representing a wide array of caregiving situations, including kin and grandparent caregivers and caregiving youth.
  6. In 2020 and 2021, researchers from UMass @Boston produced three reports based on feedback from the family caregiver listening sessions and focus groups and an RFI analysis conducted at the request of the RAISE Family Caregivers Act Advisory Council.
  7. In 2022, NASHP released the RAISE Act State Policy Roadmap for Family Caregivers. This six-part compendium used the RAISE Family Caregivers Act recommendations as a framework to create a roadmap for state officials to better understand the state policy landscape for supporting family caregivers of older adults and to identify opportunities for innovation in their own states.
  8. To support these efforts, NASHP convened a faculty consisting of state officials, advocates, and family caregivers specifically to support the RAISE Act. From 2020 through the present, this group has provided technical assistance and insight to the RAISE Advisory Council. Some faculty members also contributed suggested actions for this document.

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Federal Actions

Key Examples of Federal Actions

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.

Given that many federal programs and initiatives to support family caregivers operate independently of each other, the federal actions outlined in this document make up the first phase in what will be an iterative process by the federal government to better coordinate and improve federal recognition and support of family caregivers. Consistent with the requirement of the RAISE Family Caregivers Act that all federal actions be within existing programs, these actions are adjustments to existing processes and procedures. When taken as a whole, they represent the first time that agencies across government have surveyed their own programs to identify ways of improving consistent access to supports and services for family caregivers—a significant step in and of itself. As the Strategy is implemented and updated, and federal agencies have more flexibility to plan and budget for programming that can assist family caregivers, the Advisory Councils anticipate that more federal actions will emerge. Members of the Advisory Councils believe in the significant benefits of an ongoing cross-government initiative to better coordinate all federal efforts supporting family caregivers.

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Creating the Strategy

The National Strategy to Support Family Caregivers (Strategy) is the result of three years of focused effort by two Congressionally mandated advisory councils: The Recognize, Assist, Include, Support, and Engage (RAISE) Act Family Caregiving Advisory Council and The Advisory Council to Support Grandparents Raising Grandchildren (SGRG) (collectively referred to herein as the Advisory Councils) . The two Advisory Councils were formed in 2019 to explore and document the challenges faced by family caregivers and kin and grandparent caregivers, respectively . Each was charged with providing actionable recommendations for supporting their corresponding caregiving populations in a holistic way both now and in the future . In addition, the RAISE Act directed the development of a family caregiving strategy . In 2021, each Advisory Council delivered an initial report to Congress . The reports contained recommendations for increasing awareness and outreach, inclusion, and services; reducing the financial challenges faced by family caregivers; and improving data, research, and the use of evidence-informed approaches in the field . The reports also offered testimonials from family caregivers to help illustrate why it is imperative that the nation do more to support them . During this work, it became clear that because family caregiving is such a diverse activity that affects different people at various stages of life and requires a wide range of skills and competencies, the best way to holistically support all family caregivers would be through a unified effort . As a result, the Advisory Councils collaborated to develop the Strategy Their first step was to articulate a shared vision . They began by describing a world in which family caregivers have the support needed to provide care without jeopardizing their own financial, emotional, and physical stability . Each council member submitted statements detailing their individual perspectives on what the Strategy should achieve—and the impact on family caregivers if the shared vision were realized . Their individual responses reflected the wide range of challenges and joys that are experienced by many family caregivers . It is important to note that 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 . For example, although expanding access to affordable, quality childcare is crucial to supporting working parents (and to advancing equity), and parents are “family caregivers” in the literal meaning of the term, that issue is beyond the scope of this strategy . Similarly, the Advisory Councils recognize that the Strategy does not fully address all aspects of family caregiving, as there is no-one-size-fits-most solution to addressing the needs of more than 53 million individuals providing care in the U .S . Specific populations of family caregivers, especially those with more demanding and/or complex caregiving responsibilities (described by family caregivers as “more intense” responsibilities), likely will need additional support not described in this initial release of the Strategy.

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First Principles: Cross-Cutting Considerations for Family Caregiver Support

Placing the Family and Person at the Center of All Interactions

Family- and person-centered approaches are those that treat people as individuals and allow for the investment of time in finding out what is important to them and relevant to their treatment and support It is sometimes referred to informally as “individualized care” because this approach allows for clinicians to invest time in understanding “what matters most to people in their care and creating the conditions to enable these needs to be met” (Kulkuski, et al , 2019) When it comes to family caregiving, that distinction matters because caregivers themselves are so often forgotten in clinical and social service settings where the focus is solely on the needs of the person receiving support A person-centered approach that supports family caregivers also would consider the caregiver when developing the plan of care, and care plans would be built to balance the needs of both, with support from a facilitator as needed and desired The facilitator might be a case manager, support coordinator, clinician, peer specialist, or another independent staff person who is specifically tasked with helping to facilitate a personcentered plan The methods used to undertake person-centered planning may vary based on the unique structures of systems and the unique needs and preferences of the people they support But in all circumstances, the relationship between the person and the facilitator is a mutually respectful partnership where the plan is co-created with the goal of helping the person and their family caregiver achieve their unique vision for a meaningful care plan and all activities focus on the person (and family) as a whole and are informed by culture and identity When the family caregiver knows that their unique voice is heard and valued and the preferences and needs of the individual they are supporting are valued, and they are confident in their skills and abilities to provide support, they can be more effective in their caregiving This confidence will enable them to provide better quality support for longer Key to ensuring this confidence is the availability of multi-faceted training for family caregivers on the range of issues and tasks they might be called upon to handle Additionally, if family caregivers know where to find and access the support and services needed for the individuals for whom they are caring and when they can access assistance for their own needs, they can more effectively focus on addressing the needs of those they support Further, having access to services and supports focusing on their unique needs, provided in a way they deem most appropriate, family, kin, and grandparent caregivers can realize greater benefit from formal services like respite, counseling, or skills training.

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