RAISE Family Caregivers Act: 

Progress Toward a National Strategy to Support Family Caregivers 

Administration for Community Living

RAISE Family Caregiving Advisory Council

Progress Report

April 23, 2020
RAISE Family Caregivers Act: Progress toward a National Strategy to Support Family Caregivers 

TABLE OF CONTENTS

Introduction................................................................................................................................ 2

The RAISE Family Caregivers Act.......................................................................................... 2

Progress Report......................................................................................................................... 3

Selection of the Family Caregiving Advisory Council .............................................................. 3

The RAISE Act Family Caregiver Resource and Dissemination Center.................................. 4

Convening the Family Caregiving Advisory Council................................................................ 4

Second Full Council meeting .................................................................................................. 5

Next Steps ................................................................................................................................. 6

Public Input ............................................................................................................................ 6

Inventory of Federal Efforts to Support Family Caregivers...................................................... 6

Authors ...................................................................................................................................... 7
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INTRODUCTION

In 2017, an estimated 41 million family caregivers in the United States provided 34 billion hours 

of care to adults with chronic health conditions or disabilities.i This is in addition to the millions of 

parents who care for children with disabilities or chronic illness.

This estimate isn’t surprising. Family caregivers, who have historically assisted with household 

tasks and personal care, are increasingly called on to provide medical and complex care at 

home (care provided by trained health care professionals in the past), while also navigating 

insurance and health care systems. These time-intensive and demanding responsibilities are 

often complicated by additional barriers including privacy requirements of HIPAA (Health 

Insurance Portability and Accountability Act), health care delivery models that do not include 

family caregivers, and the inability for providers to bill for time spent with caregivers. These 

difficulties may be exacerbated for diverse populations that experience disproportional problems 

with access or communication. 

Given the critical role caregivers play in the health and well-being of individuals across the 

lifespan, caregiving has become increasingly present within federal and state health policies 

over the last two decades. A key exemplar of bipartisan commitment to supporting family 

caregivers is the Recognize, Assist, Include, Support, and Engage Family Caregivers Act of 

2017 (RAISE Family Caregivers Act). 

The RAISE Family Caregivers Act

The RAISE Family Caregivers Act, which became law on Jan. 22, 2018, directs the Secretary of 

Health and Human Services to develop a national family caregiving strategy. The strategy will 

identify actions that communities, providers, government, and others are taking and may take to 

recognize and support family caregivers. 

To support the development and execution of the strategy, the RAISE Act also requires 

establishment of a Family Caregiving Advisory Council to provide advice and recommendations 

and identify best practices for recognizing and supporting family caregivers. The legislation

defines “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.”

The Administration for Community Living (ACL) is leading the Department of Health and Human 

Services’ efforts around this council.

The legislation required that the council include up to 15 voting members, with at least one from 

each of the following constituencies: family caregivers; older adults who need long-term 

services and supports; individuals with disabilities; health care and social service providers; 

providers of long-term services and supports; employers; paraprofessional workers; state and 
RAISE Family Caregivers Act: Progress Toward a National Strategy to Support Family Caregivers Page 3

local officials; accreditation bodies; veterans; and as appropriate, other experts and advocacy 

organizations engaged in family caregiving.

The voting members reflect the diversity of caregivers and individuals receiving long-term 

services and supports (LTSS) as well as non-voting members from federal departments and 

agencies that play a role in these issues. The council must meet quarterly in the year from the 

date of enactment, and at least three times annually thereafter. 

The council is tasked with creating and submitting an initial report and biennial updates 

thereafter. The preliminary report will include an inventory of federally funded efforts to support 

caregivers and recommendations to improve these efforts and effectively deliver services based 

on the performance, mission, and purpose of a program. The goal of this inventory is to highlight 

areas of overlap as well as gaps in federal programs that support caregivers. The initial report 

will also review the financial, social, and emotional challenges of caregiving and the impact of 

caregiving on Medicare and Medicaid. 

The National Family Caregiving Strategy will be developed by the Secretary of Health and 

Human Services, the council, and heads of other federal agencies. The strategy shall identify 

recommended actions that federal, state, and local governments; communities; and health and 

LTSS providers can take to support family caregivers with diverse needs.

The following is an update on progress since enactment of the RAISE Family Caregivers Act.

PROGRESS REPORT

Selection of the Family Caregiving Advisory Council

ACL published a Federal Register Notice on October 12, 2018 calling for nominations for nonfederal members to serve on the council. ACL received more than 270 unique nominations for 

individuals to serve on the council. ACL staff reviewed each submission and narrowed the field 

of proposed nominees. In selecting the nominees, the following factors were considered:

1. Experience and qualifications: Each nomination represented different experiences and 

qualifications. Every effort was made to identify the experiences and expertise that 

would ensure a council membership with a robust and diverse background and 

perspective on caregiving.

2. Geographic and regional distribution: The experiences of caregivers, older adults and 

persons with disabilities, and the professionals who work in this arena can vary by 

state/region, as can the resources and programs available to support them. The 

nominees reflected a cross-section of the nation.

3. Letters of support: Many of the nominations included letters of support and reference 

from legislators, co-workers, employers, etc. These letters were used to support ACL’s 

recommendation to nominate.
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The RAISE Act Family Caregiver Resource and Dissemination Center

In May 2019, The John A. Hartford Foundation awarded a three-year grant to the National 

Academy for State Health Policy (NASHP) to support the efforts of the council. The grant 

established NASHP’s RAISE Act Family Caregiver Resource and Dissemination Center as a 

national focal point for resources, technical assistance, and policy analysis for states and the 

broader stakeholder caregiver community. 

The goals of the dissemination center include: development of family caregiving resources for 

state and federal policymakers and other stakeholders; technical support for the council and 

subcommittees as they craft policy recommendations; opportunities for experts and thought 

leaders to provide perspectives and expertise to the council; and assistance to states as they 

develop policies to address family caregiver issues. 

NASHP created a faculty of experts in the field to inform the work of the center and the council. 

The faculty represents a wide range of thought leaders from family caregiving organizations, 

academic institutions, and state administrations.

Convening the Family Caregiving Advisory Council

On August 28th and 29th, 2019, the council convened for the first time in Washington, DC. The 

inaugural meeting included remarks from Lance Robertson, Administrator and Assistant 

Secretary of Aging at ACL, and Eric Hargan, Deputy Secretary of the Department of Health and 

Human Services, both of whom emphasized the importance of the council’s work. Throughout 

the first day, speakers shared results and strategies from advocacy efforts, national research, 

and state-driven task forces. Common among all presentations were the following threads: the 

importance of recognizing the diversity of needs among caregivers and care recipients; 

supporting the wellbeing of family caregivers and care recipients; and integrating family 

caregivers into--and empowering them within--the healthcare system. The council’s members 

broke into three subcommittees for smaller group discussion. 

Subcommittee 1: Assist Caregivers in Optimizing Care and Support for their Loved 

Ones. This subcommittee will prioritize caregiver empowerment through resource 

identification and access as well as efforts to promote and support development of a 

workforce with the capacity to support family caregivers and individuals requiring care.

Subcommittee 2: Enable Caregivers to Provide Care While Maintaining their Health and 

Well-Being. This subcommittee will look at access to services and supports that 

contribute to a plan of care and support for family caregivers as well as ways to 

increase/improve the capacity to meet family caregiver needs. Notably, these priorities 

will take a lifespan approach, assessing the continuum of care across the life course. 

This subcommittee will focus on short-term and long-term workforce development and 

financial considerations of care and increasing available resources and services and 

uptake of evidence-based practices. 
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Subcommittee 3: Enhance Public Awareness and Education and Engage Nongovernmental Entities to Support Caregivers. This subcommittee will focus on making 

the case to multiple audiences for the value of family caregivers and identifying and 

engaging traditional and non-traditional partners in family caregiver support. 

Since the inaugural meeting, the subcommittees have been meeting regularly to discuss and 

make action plans for their priority areas. These subcommittee meetings have been facilitated 

by ACL and NASHP.

Second Full Council meeting

On February 11 and 12, 2020, the council convened for the second time, this time virtually. At 

this meeting, the council formed guiding principles and goals and established procedures for 

obtaining public input. The council developed the following guiding principles, as a framework 

for the national strategy:

• “Family caregiver” is an inclusive and holistic term that includes all who are caring for 

individuals across the life span who have chronic or other health conditions, disabilities, 

or functional limitations.

• Person- and family-centered care involves putting the person and family at the center of 

care teams, and this approach should be promoted while acknowledging the challenges 

of possible conflicting goals.

• Efforts to support family caregivers should advance the autonomy, choice, and ability of 

caregivers and care recipients to engage meaningfully in their communities.

• Recommendations should recognize and support family caregivers in a fair and impartial 

manner that respects and appreciates their complexity, diversity, and dignity and 

accounts for the financial impact on families.

• The national strategy, created in partnership with family caregivers, will be a living 

document that fosters cross-discipline and cross-sector collaboration and outlines 

ongoing actions to be taken by federal, state, and local governments, communities, 

providers, and others.

The council developed primary goals for its recommendations to Congress:

• Expand awareness, outreach, education, and access for programs, services, and 

products to optimize the physical, emotional, and financial well-being of family caregivers 

and care recipients;

• Recognize, include, and support family caregivers as key partners in the provision of 

health care and long-term services and supports;

• Protect, promote, and enhance financial and workplace security of family caregivers;

• Promote research, identification, and adoption of evidence-based practices in caregiver 

support; and
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• Strengthen program administration, governance, and collaboration among all 

appropriate stakeholders to build a society that recognizes family caregivers.

NEXT STEPS

The council is moving forward with great enthusiasm and momentum. In 2020, The council will 

focus on developing the national strategy and delivering its initial report to Congress. The 

following activities will support this effort.

Public Input 

The council called on the public to help inform the national strategy to support family caregivers. 

In December 2019, ACL issued a Request for Information (RFI) that received more than 1,600 

responses before it closed on February 7, 2020. The information contained in the responses will 

be used to: (1) assist The Council in formulating goals, objectives, and recommendations in 

support of the initial report to Congress and development of the national caregiving strategy, 

and (2) inform public listening sessions. 

As part of John A. Hartford Foundation’s grant to NASHP, the LTSS Center (a joint venture 

among UMass Boston, Community Catalyst, and LeadingAge) was awarded a competitive 

contract to sort, categorize, and analyze information collected from the RFI. The center will also 

conduct 10 to 15 virtual and in-person listening sessions with stakeholders and members of the 

public in 2020. UMass will use the RFI to identify specific services, supports, or policy initiatives 

that meet the caregiving needs and can inform the development of federal, state, and 

community programs and services.

Detailed analysis of the RFI will be presented to the council for its consideration and 

prioritization to inform the initial report to Congress. Responses to the RFI will also be used to 

develop focus groups to gather more information. Currently, three in-person focus groups are 

planned, one in the metropolitan DC area and two in the Boston area. One focus group in the 

Boston area will be conducted in Spanish.

Inventory of Federal Efforts to Support Family Caregivers 

To support the council’s recommendations, ACL is currently conducting an inventory and 

assessment of all federally funded efforts to recognize and support family caregivers and the 

outcomes of such efforts. This inventory will include analyses of which federally funded efforts 

are reaching family caregivers as well as gaps in such efforts, as required by the legislation. 

Although the council members have been thoughtfully, diligently, and thoroughly fulfilling the 

requirements of the RAISE Act, it is clear that this work has only just begun. The investment and 

commitment of policymakers, advocacy organizations, as well as the continuous input from the 

public, are critical to the success of this legislation. Members of the public can follow the 

council’s continued progress at raisefamilycaregiving.org, which is updated regularly to include 

full council meeting notes, streaming, and resources.
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AUTHORS

Lauren Bangerter, Ph.D., is a Health and Aging Policy fellow at the Administration for 

Community Living and an assistant professor of Health Services Research at the Mayo Clinic 

College of Medicine and Science. 

Kelly O’Malley, Ph.D., is a Health and Aging Policy fellow at the Administration for Community 

Living and an advanced fellow in geriatrics at the New England Geriatric Research and 

Education Center (GRECC) through the Veteran’s Health Administration.

Contributors

Laural Traylor, MSW, is a VA Health and Aging Policy fellow at the Administration for 

Community Living and Eldercare Workforce Alliance. She is a national program manager for the 

Department of Veterans Affairs, Office of Academic Affiliations and consultant for VA’s National 

Caregiver Support Program. 

Greg Link, MA, is the Director of the Office of Supportive and Caregiver Services at the 

Administration for Community Living.

Wendy Fox-Grage, MSG, MPA, is a project director with the Chronic and Vulnerable 

Populations Team at the National Academy for State Health Policy (NASHP), her work focuses 

on long-term services and supports, family caregiving, and palliative care. 

Rani Snyder, MPA, is Vice President, Program at The John A. Hartford Foundation. Rani’s 

focus is on identifying and guiding health care programs that have set the standard for medical 

best practices, increased medical education opportunities, and maximizing resources to improve 

health care broadly.

Scott Bane, JD, is a Program Officer at The John A. Hartford Foundation. Scott’s career has 

been directed toward helping vulnerable people, with an emphasis on ensuring that they have 

access to effective services.

ENDNOTE

i Reinhard S, Feinberg LF, Houser A, Choula R, Evans M. Valuing the Invaluable: 2019 Update Charting a Path 

Forward. AARP Public Policy Institute; 2019. https://www.aarp.org/content/dam/aarp/ppi/2019/11/valuing-theinvaluable-2019-update-charting-a-path-forward.doi.10.26419-2Fppi.00082.001.pdf.