Implementing the RAISE 

Family Caregivers Act 

The Recognize, Assist, Include, Support, and Engage 

(RAISE) Family Caregivers Act of 2017, was signed into 

law in January 2018. It seeks to address the diverse and 

complex issues faced by family caregivers through the 

development of a National Family Caregiving Strategy. The 

RAISE Act consists of three key elements: the formation of 

the nation’s first Family Caregiving Advisory Council; the 

development of a Report to Congress; and the creation of 

National Family Caregiving Strategy.

The Family Caregiving 

Advisory Council

To form the council, ACL issued a call for nominations 

in the Federal Register in October 2018; 270 unique 

nominations were received. In selecting the nominees 

for appointment, ACL weighed breadth of experience, 

qualifications, and geographic and regional distribution 

to ensure the council reflected the dynamic nature of 

the family caregiving landscape. Of the council members 

selected, many are—or have been—either caregivers, 

people receiving support—or both.

In August 2019, the council convened in Washington, D.C. 

During the meeting—and subsequent in-person and virtual 

meetings—council members and guest speakers shared 

and discussed personal stories, results, and strategies from 

advocacy efforts, and findings of national research and statedriven task forces. Throughout 2020 and 2021, the council 

conducted substantive deliberations—moving to an online 

platform during the COVID-19 pandemic. Inherent in the 

council’s work was a focus on balancing the perspectives 

and needs of caregivers of older adults with those of care 

partners and family members of people with disabilities.

Over the course of their deliberations, the council identified 

several unifying characteristics of family caregivers that 

must be acknowledged as we look for more holistic ways 

of supporting them: 

1. A significant personal relationship or connection 

often exists between family caregivers and the people 

who receive support. Some caregivers provide 

assistance out of a wellspring of love and concern, 

but personal feelings are not always the driving force. 

Other caregivers provide care in response to tradition, 

culture, family expectation, and other factors. Often 

some combination of these reasons shapes the 

experience of family caregivers. 

2. Many family caregivers are driven by the desire to help 

maintain the independence, dignity, engagement, 

and/or quality of life of the person they are 

supporting.

3. Caregivers often provide support without a formal 

assessment of their needs or of the person receiving 

support. They often learn “on the job,” taking on tasks 

they do not know how to do, or do not feel comfortable 

doing, and have little access to training or assistance. 

Further, there is little recognition of the difficulty of their 

responsibilities. 

4. The nature of family caregiving is becoming ever 

more complex in the modern era as it extends to 

more medical, administrative, and care coordination 

activities than ever before. Caregiving today can 

include complex medication management, dealing 

with insurance payers, operating electronic equipment 

and medical devices, and coordinating care across 

systems.

5. No matter how emotionally rewarding, caregiving 

can leave caregivers financially, emotionally, and 

physically depleted, and socially isolated. 

Last Updated: 9/2021

The Administration for Community Living is an operating division of the 

U.S. Department of Health and Human Services. Visit ACL.gov.
The Initial Report to Congress

The council’s initial Report to Congress addresses 

each of the topic areas specified by Congress in the 

RAISE Act, and includes:

» The identification of challenges faced by family 

caregivers, including financial, health, and other 

challenges, and existing approaches to address 

such challenges.

» An overview of federally funded efforts to address 

those challenges.

» A discussion of how family caregiving impacts the 

Medicare program, the Medicaid program, and 

other federal programs.

» Recommendations to improve and better 

coordinate federal programs and activities to 

recognize and support family caregivers and 

improve the coordination of such federal programs 

and activities with state programs and other 

programs. 

In addition to surveying existing literature, programs, 

and data about family caregiving, and with generous 

support made possible by an innovative public-private 

partnership, the council undertook a broad effort to 

engage the public for input to the report. Those efforts 

included a widely disseminated Request for Information 

(RFI) in 2019, listening sessions, focus groups, and 

interviews with 25 family caregivers whose stories and 

words are presented throughout the report.

In November 2020, the council adopted 26 

recommendations to improve and better coordinate 

federal, state, tribal, and community programs and 

activities to recognize and support family caregivers. 

These recommendations are the framework of the 

forthcoming National Family Caregiving Strategy. They 

cover a range of critical issues the nation must address 

in bold and meaningful ways in order to demonstrate 

that it values the contributions of family caregivers.

Looking Ahead: The National 

Family Caregiving Strategy

The RAISE Act is specific in its requirements for the 

scope of the National Family Caregiving Strategy. 

Using the 26 recommendations, and through further 

engagement with the public, the council will next 

turn its efforts to developing the Strategy. With the 

Act as a framework, the Strategy will identify actions 

that the federal government along with states, local 

communities, health and LTSS providers, and others 

can take to recognize and support family caregivers. 

Like the Report to Congress, the Strategy will 

reflect the diverse needs and preferences of family 

caregivers and will include actions the nation can 

take to better-support family caregivers using familycentered approaches; assessment and service 

planning; greater respite options; more options 

for information, education, and training supports; 

strengthening financial security and addressing 

workplace issues; and fostering improvements in 

service delivery. When completed, the Strategy 

will provide a national roadmap towards greater 

recognition, assistance, inclusion, support, and 

engagement of family caregivers.

Learn more about the RAISE Family Caregivers Act 

and the Advisory Council at ACL.gov/RAISE.

Recognize ASSIST INCLUDE SUPPORT ENGAGE

Implementing the RAISE Family Caregivers Act ACL.gov