What Is the Caregiver Act? (RAISE Family Caregivers Act Explained)

When people search for the “Caregiver Act,” they usually want to know one thing: is there a federal law that helps family caregivers? The answer is yes, but not in the way many expect. The law most commonly called the Caregiver Act is actually the RAISE Family Caregivers Act, a federal framework designed to recognize and support the millions of Americans who provide unpaid care to loved ones. The short title of this law, as specified in the bill's opening section, is the RAISE Family Caregivers Act.

This article explains what the act does, who it covers, and what it means for caregivers in practical terms. It also clarifies what the law does not do, helping readers set realistic expectations about benefits and services.

Introduction to Family Caregivers

Family caregivers form the foundation of health services in America. They provide essential support to loved ones with chronic conditions, disabilities, or age-related challenges. These caregivers include adult family members, friends, and neighbors. They help with daily living tasks, health care coordination, and emotional support. Most work without pay or formal recognition. Their efforts benefit millions of families and communities nationwide.

The Department of Health and Human Services recognized this critical role. They prioritized support for family caregivers through specific legislation. The RAISE Family Caregivers Act was signed into law in January 2018. RAISE stands for Recognize, Assist, Include, Support, and Engage. The act addresses caregivers' unique needs directly. It ensures access to resources, education, and respite options. The legislation creates a national family caregiving plan. It requires the Department of Health to develop a comprehensive Family Caregiving Strategy. This strategy guides federal, state, and local support efforts. The focus remains on person-centered care, care coordination, and long-term services.

The law established the RAISE Family Caregiving Advisory Council as a key feature. This council brings together representatives from diverse backgrounds. Members include family caregivers, older adults, and individuals with disabilities. Health care providers, long-term services professionals, and employers participate. Paraprofessional workers, state officials, local officials, and veterans contribute expertise. The Advisory Council advises on recognition and support methods for family caregivers. Their initial report inventories federally funded efforts. It assesses current programs and recommends coordination improvements. The report identifies specific challenges caregivers face daily.

Additional programs support family caregivers beyond the RAISE Act. The Veterans Affairs department operates the Program of Comprehensive Assistance for Family Caregivers (PCAFC). This program provides respite care, education, and training to eligible veteran caregivers. State and local initiatives complement federal programs. Together, these programs ensure caregivers access necessary assistance and resources. They help caregivers provide safe and effective care.

Supporting family caregivers benefits both care recipients and the broader community. The RAISE Family Caregivers Act addresses caregiving challenges directly. Related programs promote better outcomes for families across America. Education and training empower caregivers to continue their vital work. Coordinated services ensure loved ones receive proper care and support. These efforts recognize the essential role caregivers play in American healthcare.

Quick answer: what is the Caregiver Act?

The term “Caregiver Act” most often refers to the RAISE Family Caregivers Act, a federal law signed by President Donald Trump on January 22, 2018. RAISE stands for Recognize, Assist, Include, Support, and Engage family caregivers.

This law does not provide direct cash benefits or payments to individual caregivers. Instead, it directs the U.S. Department of Health and Human Services to develop a national strategy that improves how the federal government supports family caregivers.

Here is what the act does in summary:

• Creates a national Family Caregiving Strategy to guide federal, state, and local efforts
• Establishes an advisory council made up of caregivers, health providers, employers, and government representatives
• Encourages better coordination of services across Medicare, Medicaid, Veterans Affairs, and state agencies
• Improves information sharing about caregiver resources and best practices
• Gathers public input to shape ongoing policy development

The national strategy is developed and implemented in a manner that addresses the diverse needs and circumstances of family caregivers, ensuring support is person- and family-centered and aligns with best practices.

The law includes a five-year sunset provision from the date of enactment, meaning its authority expires unless Congress renews or builds on it through later legislation. However, the strategies, reports, and best practices developed under the act can continue to influence policy even after the sunset date.

Background: why was the Caregiver Act created?

The United States has tens of millions of unpaid caregivers. Estimates place the number around 53 million adults who provide care to older adults, people with disabilities, children with special needs, and veterans. This includes approximately 5.5 million people caring for eligible veteran family members.

The economic impact of this unpaid work is substantial. In 2017, researchers estimated the value of unpaid caregiving at approximately $470 billion annually. Despite this contribution, family caregivers often received little formal recognition or support from government programs.

Before the RAISE Family Caregivers Act, support for caregivers was fragmented:

• Medicare focused primarily on the person receiving care, not the caregiver
• Medicaid services varied widely by state, with inconsistent caregiver support
• Veterans Affairs had its own caregiver programs with separate eligibility requirements
• State and local programs operated independently with no national coordination
• No single federal plan existed to address caregiver needs comprehensively

Bipartisan concern in Congress grew as evidence mounted about caregiver stress, financial strain, and lack of respite care options. Caregivers frequently reported leaving jobs, depleting savings, and experiencing burnout without adequate resources or assistance.

This led to the introduction of the RAISE Family Caregivers Act in 2017. The bill passed unanimously in both the Senate and the House of Representatives, reflecting broad agreement that caregivers deserved better national recognition and coordinated support.

What does the RAISE Family Caregivers Act actually do?

The RAISE Family Caregivers Act is a framework law. It directs the federal government to plan, coordinate, and share best practices rather than creating a new benefit program with direct payments.

The core functions of the act include:

• Develop a national Family Caregiving Strategy: The Department of Health and Human Services must create and publish a comprehensive strategy for supporting caregivers
• Create a federal advisory council: An expert group guides strategy development and provides ongoing recommendations
• Coordinate existing programs: Federal agencies must work together to reduce duplication and fill gaps in caregiver services
• Gather public input: The strategy incorporates feedback from caregivers, providers, and advocates through formal comment processes

The act applies to adult family members and other informal caregivers who help people with chronic illness, disability, or functional limitations. Care can occur in home settings or community environments.

Central to the law is an emphasis on person and family centered care. This means viewing caregivers as partners in health care delivery, not just invisible support. The act promotes better care coordination across health care settings, long term services, and community programs.

Implementation falls primarily to the Administration for Community Living within the Department of Health and Human Services, though multiple agencies participate in carrying out the strategy.

Key definition: who counts as a “family caregiver” under the Act?

The act defines “family caregiver” broadly. It does not limit the term to blood relatives or legal family members.

Under the law, a family caregiver is:

• An adult (18 years or older)
• A family member, partner, friend, neighbor, or other person with a significant relationship to the care recipient
• Someone who provides informal, typically unpaid assistance
• Helping a person with a chronic illness, disability, or functional limitation
• Providing care in a home or community setting

The types of help covered include:

• Activities of daily living such as bathing, dressing, and eating
• Medical tasks like medication management, wound care, or operating medical equipment
• Care coordination across providers and services
• Transportation to appointments
• Managing finances, bills, or insurance
• Verbal reminding and physical cueing for people with cognitive conditions
• Emotional support and advocacy

This definition is used for planning and policy purposes. It does not automatically qualify someone for a specific benefit, payment, or program. Eligibility requirements for actual services depend on the individual programs that provide care.

How the national Family Caregiving Strategy works

The centerpiece of the RAISE Family Caregivers Act is the national Family Caregiving Strategy. This strategy guides how federal agencies, states, employers, and communities approach caregiver support.

The strategy development process works as follows:

• The RAISE Family Caregiving Advisory Council develops recommendations based on evidence and caregiver input
• The Department of Health and Human Services publishes the initial strategy within 18 months of the law’s enactment
• The strategy must be updated at least every two years to incorporate new research, best practices, and public feedback
• All strategy documents are made public so anyone can read and reference them

The first national strategy outlined nearly 350 federal actions to improve caregiver support. It also included over 150 recommendations for state and local implementation. These recommendations are grounded in four principles:

1. Equity for all caregivers regardless of background
2. Person and family centered approaches
3. Coordination across programs and agencies
4. Evidence-based support informed by research

The strategy serves as a roadmap, not a mandate. It guides priorities and encourages alignment across different levels of government and sectors.

Main focus areas of the Family Caregiving Strategy

The law specifies topics the national strategy must address. These focus areas shape both federal actions and recommendations to states and communities.

Key focus areas include:

• Person and family centered care: Integrating caregivers into health care teams and treatment planning
• Assessment and training: Helping caregivers learn skills for safe, effective care and identifying their own support needs
• Access to respite care: Expanding respite options so caregivers can take breaks from caregiving responsibilities
• Workplace flexibility: Encouraging employers to offer flexible schedules, leave policies, and accommodations for employees who provide care
• Financial and retirement security: Addressing the economic impact on caregivers who reduce work hours or leave jobs entirely
• Program coordination: Reducing duplication across Medicare, Medicaid, Veterans Affairs, and state programs
• Improved data and research: Building evidence about what works and tracking outcomes for caregivers and care recipients

The strategy also aims to fill gaps where unpaid caregivers have few or no supports available. This includes reaching caregivers in rural areas, those caring for people with specific health conditions, and caregivers from underserved communities.

What the Caregiver Act means for family caregivers

Caregivers may not feel immediate changes from the RAISE Family Caregivers Act. The law works at a systems level, shaping policies and programs over time rather than delivering direct services.

However, the act influences support in several practical ways:

• More training and education: States and health systems are developing caregiver training programs aligned with the national strategy
• Expanded respite options: The strategy prioritizes respite care, encouraging growth in adult day programs, in-home respite, and other break services
• Better navigation help: The act supports development of caregiver resource centers and navigation assistance at state and local levels
• Workplace awareness: Employers are increasingly considering caregiver-friendly policies as the national conversation grows
• Improved recognition: The act raises national visibility of caregiver contributions and challenges

The act does not guarantee new benefits on its own. However, it shapes how existing programs like Medicaid waivers, VA caregiver support, aging services, and disability services prioritize caregiver needs.

When seeking resources, caregivers can look for state or local initiatives that reference the RAISE Act or the national strategy. Programs aligned with the strategy may offer training, respite, counseling, or navigation assistance.

Examples of changes inspired by the Act

The RAISE Family Caregivers Act influences policy directions rather than prescribing exact programs. Different states and organizations have responded in various ways.

Examples of changes include:

• State caregiver resource centers: Some states have created or expanded caregiver support programs that offer information, counseling, and connection to services
• Health system pilots: Hospital systems have developed caregiver training programs to prepare family members for discharge and home care, reducing readmissions
• Research funding: Federal agencies have increased focus on caregiver burden, effective interventions, and outcomes measurement
• Employer initiatives: Some employers have begun offering caregiver leave, flexible scheduling, or employee assistance resources

The initial report to Congress from the Advisory Council, published in September 2021, identified five overarching goals for supporting caregivers. These goals continue to guide federal priorities and inform state and community planning.

RAISE Family Caregiving Advisory Council

The RAISE Family Caregiving Advisory Council is the expert group created by the act to guide development of the national strategy. The council brings together diverse perspectives on caregiving.

Council members include:

• Family caregivers with direct experience
• Older adults who receive care
• People with disabilities
• Health care and social service providers
• Employers addressing workplace issues related to caregiving
• Veterans and representatives from the veterans community
• State and local officials involved in aging and disability services

Federal agencies participate as nonvoting members. Representatives come from:

• Centers for Medicare and Medicaid Services
• Administration for Community Living
• Department of Veterans Affairs
• And other relevant department offices

The council meets regularly throughout the year. Meetings include opportunities for public input and comment. The council issues annual reports assessing federal progress, identifying challenges, and recommending improvements.

Interested caregivers can follow council activities through the Administration for Community Living and Department of Health websites. Meeting materials, reports, and recordings are typically available to the public.

The five broad goals emerging from early Council work

Early council reports to Congress distilled many recommendations into a focused set of overarching goals. These goals guide both the national strategy and future policy development.

The five goals are:

1. Increase awareness and outreach: Help caregivers recognize themselves as caregivers and know where to find resources
2. Build community and workplace supports: Expand programs and policies that assist caregivers in their daily lives
3. Improve financial and workplace security: Address the economic challenges caregivers face when balancing work and care
4. Strengthen services: Increase access to respite care, training, education, and navigation assistance
5. Advance research and data: Build evidence about what works and track caregiver well being over time

These goals shape federal priorities and inform how states and communities design their own caregiver support programs.

Funding, timelines, and sunset of the Act

The RAISE Family Caregivers Act does not authorize new federal funding. Instead, it directs agencies to use existing appropriations to carry out its provisions.

This means:

• Agencies must integrate caregiver support into current programs
• No large, standalone funding stream was created under this act alone
• Implementation depends on how agencies prioritize caregiver needs within existing budgets

The law includes a five-year sunset provision. Authority tied specifically to the act expires five years after the January 2018 enactment unless Congress extends or replaces it with new legislation.

Even after the sunset date, the strategies, reports, and best practices developed under the act remain available. Federal agencies can continue using the national strategy as guidance. States and communities can continue implementing recommendations.

Caregivers should understand that the act creates a planning framework, not a permanent entitlement program. Future legislation may build on or expand what the RAISE Act started.

How the Caregiver Act relates to other caregiver programs

The RAISE Family Caregivers Act does not replace existing programs. It is a planning and coordination law that overlays programs already serving caregivers.

Related programs with their own eligibility requirements include:

Applications, eligibility, and benefits for these programs are governed by their own rules, separate from the RAISE Act itself.

To find concrete services, caregivers should contact Neela:

• Local Area Agencies on Aging
• Disability resource centers
• VA caregiver support coordinators (for veteran caregivers)
• State department of health or human services offices

The RAISE Act is about national strategy. Actual benefits and services come through the individual programs it helps coordinate.

Common misconceptions about the Caregiver Act

The name “Caregiver Act” creates confusion. Many people expect more than the law actually provides.

Common misconceptions include:

For actual benefits, caregivers should look to:

• VA caregiver programs for those caring for veterans
• State Medicaid waiver programs
• Employer leave policies
• State-specific caregiver initiatives

The RAISE Act improves coordination and planning, but does not deliver services directly.

Next steps for caregivers and advocates

Caregivers interested in policy can engage with ongoing implementation of the RAISE Family Caregivers Act and related efforts.

Practical actions include:

• Watch Advisory Council meetings: Sessions are open to the public and provide insight into federal priorities
• Submit public comments: When agencies request input on strategy updates or new initiatives, caregivers can share their experiences
• Participate in research: Some studies seek caregiver perspectives to build evidence about effective supports
• Connect with advocacy organizations: Groups that track federal caregiving policy can help caregivers stay informed and amplify their voices
• Access official resources: The Administration for Community Living and Department of Health websites publish strategy documents, council materials, and program information

Understanding the national strategy helps caregivers know what efforts exist at the federal level. Combining this awareness with local resource navigation provides the best path to real-world help.

Local resources to explore:

• Area Agencies on Aging in your community
• State aging and disability resource centers
• Support groups for caregivers in your area
• Community programs offering respite care or training

While the RAISE Family Caregivers Act does not deliver direct benefits, it represents a national commitment to recognizing and supporting the millions of family members who provide care every day. Staying informed about its implementation helps caregivers advocate for the resources they need.