THE RECOGNIZE, ASSIST, 

INCLUDE, SUPPORT, AND ENGAGE (RAISE)

FAMILY CAREGIVERS ACT COUNCIL

REFERENCE MATERIALS
Table of Contents

National Family Caregiver Organizations

Key Terms and Definitions

Major Federal Family Caregiving Legislation 

Key Federal Family Caregiving Programs

Key Federal Agencies

Federal Caregiving Legislation in the 116th Congress 
National Academy for State Health Policy 

RAISE Family Caregivers Council Resources, Page 1 

National Family Caregiver Organizations

Organization Mission Core Constituencies 

1 AARP "Empower people to choose how they live as 

they age." 

Seniors

2 ARCH National Respite 

Network

“Assist and promote the development of quality 

respite and crisis care programs in the United 

States; to help families locate respite and crisis 

care services in their communities; and to serve 

as a strong voice for respite in all forums.”

Caregivers and professionals who are seeking respite and 

crisis care programs in their community

3 Family Caregiver Alliance "Improve the quality of life for family caregivers 

and the people who receive their care." 

Family caregivers of adults with physical and cognitive 

impairments, such as Parkinson’s, stroke, Alzheimer’s and 

other types of dementia 

Family caregivers in the San Francisco Bay Area counties of: 

San Francisco, San Mateo, Santa Clara, Alameda, Contra 

Costa and Marin.

4 National Alliance for

Caregiving

"Advancing family caregiving through research, 

innovation, and advocacy." 

A national network of caregiving coalitions representing 

nearly 30 states and localities in the United States 

4A Member Group includes national organizations who are 

leaders in the field of caregiving

5 Caregiver Action 

Network

"Promote resourcefulness and respect for the 

more than 90 million family caregivers across the 

country.” 

Family caregivers across the country 

Caregivers who are taking care of people with cancer and 

rare diseases 

Organizations who employ those providing family caregiving 

services and want to provide them with more resource
National Academy for State Health Policy 

RAISE Family Caregivers Council Resources, Page 2 

6 American Association of 

Caregiving Youth

"To increase awareness and provide support 

services for youth caregivers and their families by 

connecting them with healthcare, education and 

community resources." 

Children & adolescents <18 years of age who provide 

significant assistance to relatives or household members 

who need help

7 Caring From a Distance Assist “long-distance caregivers organize for the 

task” of long-distance caregiving “and identify 

public and private service providers to help 

[their] loved one[s].”

Long-distance caregivers

8 N4A "Build the capacity of our members so they can 

help older adults and people with disabilities live 

with dignity and choices in their homes and 

communities for as long as possible." 

America’s national network of 622 Area Agencies on Aging 

The more than 250 Title VI Native American aging programs 

*N4A is a membership organization*

9 SAGE “SAGE operates at the intersection of LGBT and 

aging experiences. [Its] work ensures that all 

LGBT older people have just and fair access to the 

opportunities they deserve and are free from 

ageism.”

LGBTQ older adults and their caregivers

10 National Indian Council 

on Aging

"To advocate for improved comprehensive 

health, social services, and economic wellbeing 

for American Indian and Alaska Native Elders." 

American Indian and Alaska Native Elders 55+ 

*services are available to paying members and nonmembers*

11 National Hispanic 

Council on Aging

“To improve the lives of Hispanic older adults, 

their families, and caregivers.”

Hispanic older adults, their families, and their caregivers
National Academy for State Health Policy 

RAISE Family Caregivers Council Resources, Page 3 

12 National Caucus and 

Center on Black Aging, 

Inc.

“To enhance the quality of life for aging, and aged 

blacks, by providing a comprehensive program of 

education, information gathering and 

dissemination, and coordinating consulting 

services to the public and private sectors.”

African American and low-income minority seniors

13 Diverse Elders Coalition “[A]dvocates for policies and programs that 

improve aging in our communities as racially and 

ethnically diverse people; American Indians and 

Alaskan Natives; and lesbian, gay, bisexual and/or 

transgender people.”

Diverse Elders, including LGBTQ elders, Black elders, 

Hispanic elders, American Native and Alaskan Native elders, 

and Asian American and Pacific Islander elders

14 Rosalynn Carter Institute 

for Caregiving

“The Rosalynn Carter Institute for Caregiving 

establishes local, state, national, and 

international partnerships committed to building 

quality, long-term, home and community-based 

services. We believe this begins with providing 

caregivers with effective supports to promote 

caregiver health, skills and resilience. We also 

believe strongly in the need to provide greater 

recognition for professional and family 

caregivers. We focus on helping caregivers coping 

with chronic illness and disability across the 

lifespan.”

Caregivers coping with chronic illness and disability across 

the lifespan
National Academy for State Health Policy 

RAISE Family Caregivers Council Resources, Page 4 

Key Terms and Definitions

Key Term Acronym Definitions

(Definitions are from Families Caring for an Aging America Acronyms and Glossary) 

1 Activity of Daily Living ADL A series of basic activities performed by individuals on a daily basis necessary for independent 

living at home or in the community.

2 Care Recipient Adults aged 65 or older, who need help from others due to functional or cognitive limitations, 

or a serious health condition.

3 Caregiver Assessment The process of gathering information about a caregiving situation to identify the specific 

problems, needs, strengths, and resources of the caregiver, and their ability to contribute to 

the needs of the care recipient.

4 Caregiver Relatives, partners, friends, or neighbors who assist an older adult who needs help due to 

physical, mental, cognitive, or functional limitations.

5 Family Leave A period of time away from a job for family reasons such as to care for a spouse, child, or 

parent who has a serious health condition.

6 High-Need Care 

Recipients

Older adults who suffer from dementia or need help with at least two self-care activities (i.e., 

bathing, dressing, eating, and getting in and out of bed).

7 Home and 

Community-Based 

Services

HCBS Provide opportunities for Medicaid beneficiaries to receive services in their own home or 

community rather than institutions or other isolated settings.

8 Instrumental Activity 

of Daily Living

Instrumental activities of daily living are the skills and abilities needed to perform certain dayto-day tasks associated with an independent lifestyle.

9 Intellectual and 

Developmental 

Disabilities

IDD Disorders that are usually present at birth and negatively affect the trajectory of the 

individual’s physical, intellectual, and/or emotional development.
National Academy for State Health Policy 

RAISE Family Caregivers Council Resources, Page 5 

10 Long-Term Services 

and Supports

LTSS A variety of personal care, healthcare, and social services provided to people of all ages with 

chronic conditions and with functional limitations. Services can include personal care, help with 

medication management, paying bills, transportation, meal preparation, and health 

maintenance tasks. Services can be provided in a variety of settings such as nursing homes, 

residential care facilities, and individual homes.

11 Palliative Care Care that provides relief from pain and other symptoms, supports quality of life, and is focused 

on people with serious advanced illness and their families.

12 Patient-Centered Care Health care that establishes a partnership among practitioners and patients to ensure that 

decisions respect patients’ wants, needs, and preferences and that patients have the education 

and support they need to make decisions and participate in their own care.

13 Person-and-Family 

Centered Care

An approach to the planning and delivery of care across settings and time that is centered in 

collaborative partnerships among individuals, their defined family, and providers of care.

14 Resources for 

Enhancing Alzheimer’s 

Caregiver Health

REACH Multisite caregiver intervention study that compared a variety of interventions for dementia 

caregivers to control conditions.

15 Respite Care Services designed to allow family caregivers to have time away from their caregiving role. 

Respite can be provided at home, through adult day services in the community, or by shortterm stays in a facility or retreat setting.

16 Skilled Nursing Facility A special facility or part of a hospital that provides medically necessary professional services 

from nurses, physical and occupational therapists, speech pathologists, and audiologists. 

17 State Unit on Aging SUA State-level agencies that are responsible for developing and administering multi-year state 

plans that advocate for and provide assistance to older residents, their families, and adults with 

physical disabilities. 
National Academy for State Health Policy 

RAISE Family Caregivers Council Resources, Page 6 

Major Federal Family Caregiving Legislation

Legislation Acronym Overview

1 Family and Medical Leave 

Act

FMLA Entitles eligible employees of covered employers to take unpaid, job-protected leave for specified 

family and medical reasons with continuation of group health insurance coverage under the same 

terms and conditions as if the employee had not taken leave.

2 Older Americans Act OAA Originally passed in 1965, this legislation authorized grants to states for the creation of new or 

improved programs for community planning and services, and for training, through research, 

development, or training project grants in the field of aging. The OAA was amended in 1978 to 

include Title VI, which currently provides caregiver support services, in addition to nutrition and 

other supportive services, to American Indians, Alaska Natives, and Native Hawaiians. 

3 Recognize, Assist, Include, 

Support, and Engage 

(RAISE) Family Caregivers 

Act

RAISE Directs the Department of Health and Human Services (HHS) to develop and make publicly 

available a National Family Caregiving Strategy that identifies recommended actions for 

recognizing and supporting family caregivers in a manner that reflects their diverse needs. Calls for 

HHS to convene a Family Caregiving Advisory Council to advise the department on recognizing and 

supporting family caregivers. 
National Academy for State Health Policy 

RAISE Family Caregivers Council Resources, Page 7 

Key Federal Family Caregiving Programs

Legislation Acronym Overview

1 Lifespan Respite 

Care Program

• Offers respite care services for family caregivers of children and adults of all ages with special needs.

• Aims to “improve the delivery and quality of respite services available through the following objectives:

o Expand and enhance respite services in the states;

o Improve coordination and dissemination of respite services;

o Streamline access to programs;

o Fill gaps in service where necessary; and

o Improve the overall quality of the respite services currently available.”

2 National Family 

Caregiver Support 

Program

NFCSP “Provides grants to states and territories to fund various supports that help family and informal caregivers 

care for older adults in their homes for as long as possible. NFCSP grantees provide five types of services:

o Information to caregivers about available services;

o Assistance to caregivers in accessing supportive services;

o Individual counseling, support groups, and caregiver training to assist caregivers in making

decisions and solving problems relating to their roles;

o Respite care to temporarily relieve caregivers from their responsibilities; and,

o Supplemental services, on a limited basis, to complement the care provided by caregivers.”

Native American 

Caregiver Support 

Services

“Grants assist American Indian, Alaskan Native, and Native Hawaiian families caring for older relatives with 

chronic illness or disability, and grandparents caring for grandchildren. The program offers a variety of 

services that meet a range of caregivers’ needs, including information and outreach, access assistance, 

individual counseling, support groups and training, respite care, and other supplemental services.”

4 VA Caregiver 

Support Program

“Caregivers play an important role in the health and well-being of Veterans. The Caregiver Support 

Program offers training, educational resources, and multiple tools to help [caregivers] succeed.” 

5 The National 

Network of 

University Centers 

for Excellence in 

Developmental 

Disabilities 

UCEDD “A nationwide network of independent but interlinked centers, representing an expansive national 

resource for addressing issues, finding solutions, and advancing research related to the needs of 

individuals with developmental disabilities and their families. Discretionary grants are awarded to 

interdisciplinary education, research, and public service units of universities and public or nonprofit 

entities associated with universities.” 

3
National Academy for State Health Policy 

RAISE Family Caregivers Council Resources, Page 8 

Education, 

Research, and 

Service

6 Federal Medicaid 

Authorities

Medicaid is the major source of funding for long-term services and supports (LTSS), which include home 

and community-based services (HCBS). “Medicaid HCBS include four types of state plan benefits and two 

types of waivers. State plan HCBS include home health; personal care; Section 1915 (i), which authorizes 

HCBS targeted to a particular population with functional needs that are less than an institutional level of 

care; and CFC attendant services and supports. HCBS waivers include Section 1915 (c) and Section 

1115, both of which allow states to expand financial eligibility and offer HCBS to seniors and people with 

disabilities who would otherwise qualify for an institutional level of care, while limiting enrollment.”

7 Family Support 

Research and 

Training Center

FSRTC “The FSRTC is a collaboration of researchers and organizations who are focused on synthesizing and 

generating knowledge about the needs and experiences of families who provide support to children and 

adults with disabilities across the life course.” 
National Academy for State Health Policy 

RAISE Family Caregivers Council Resources, Page 9

Key Federal Agencies

Legislation/Program Acronym Overview

1 Administration for Community 

Living

ACL “Brings together the efforts and achievements of the Administration on Aging (AoA), the 

Administration on Intellectual and Developmental Disabilities (AIDD), and the HHS Office 

on Disability to serve as the Federal agency responsible for increasing access to community 

supports, while focusing attention and resources on the unique needs of older Americans 

and people with disabilities across the lifespan.”

2 Administration on Aging AoA The agency designated by the Department of Health and Human Services “to carry out the 

provisions of the Older Americans Act (OAA).” The AoA has provided home and 

community-based services to millions of older persons through the programs funded 

under the OAA.

3 Health Resources and Services 

Administration

HRSA “The primary federal agency for improving health care to people who are geographically 

isolated, economically, or medically vulnerable.”

4 Veterans Health Administration VHA “The largest integrated health care system in the U.S., providing care at 1,255 health care 

facilities... to over 9 million Veterans enrolled in the VA health care program.”
National Academy for State Health Policy 

RAISE Family Caregivers Council Resources, Page 10

Federal Caregiver Legislation in the 116th Congress

Chamber Title Sponsor Co-Sponsors Date 

Introduced

Latest Action Overview

1 House Supporting Family 

Caregivers Act of 

2019

Rep. Andy 

Levin (D-MI)

Rep. Elise 

Stefanik (R-NY) 

and Rep. Brian 

Fitzpatrick (R-PA)

July 16, 

2019

Referred to 

Education and 

Labor 

Committee

To amend the Older Americans Act of 

1965 to support family caregivers.

2 House Credit for Caring 

Act of 2019

Rep. Linda 

Sanchez (DCA)

Rep. Tom Reed 

(R-NY)

May 14, 

2019

Referred to 

House Ways and 

Means 

Committee

This bill allows an eligible caregiver a 

tax credit of up to $3,000 for 30% of 

the cost of long-term care expenses 

that exceed $2,000 in a taxable year. 

The bill defines "eligible caregiver" as 

an individual who has earned income 

for the taxable year in excess of 

$7,500 and pays or incurs expenses 

for providing care to a spouse or 

other dependent relative with longterm care needs.

3 Senate Supporting 

America’s 

Caregivers and 

Families Act

Sen. Dick 

Durbin (IL)

Sen. Tim Kaine 

(D-VA)

April 3, 

2019

Referred to 

HELP Committee

To amend the Older Americans Act of 

1965 in order to address the needs of 

caregivers, and for other purposes.

4 Senate Supporting 

Veteran 

Caregivers Act of 

2019

Sen. Robert 

Casey (D-PA)

Sen. Jon Tester 

(D-MT) and Sen. 

Patty Murray (DWA) 

May 23, 

2019

Referred to 

Veterans’ Affairs 

Committee

To reinstate and compensate family 

caregivers who were improperly 

removed from the family caregiver 

program of the Department of 

Veterans Affairs or whose benefits 

were reduced and to ensure all 

veteran caregivers receive the 

support and assistance to which they 

are eligible in a fair and consistent 

manner, and for other purposes.
National Academy for State Health Policy 

RAISE Family Caregivers Council Resources, Page 11

5 Senate TEAM Veteran 

Caregivers Act

Sen. Gary 

Peters (D-MI)

Sen. Marsha 

Blackburn (R-TN)

July 23, 

2019

Referred to 

Veterans’ Affairs 

Committee

To require the Secretary of Veterans 

Affairs to formally recognize 

caregivers of veterans, notify 

veterans and caregivers of clinical 

determinations relating to eligibility 

for caregiver programs, and 

temporarily extend benefits for 

veterans who are determined 

ineligible for the family caregiver 

program, and for other purposes.

6 Senate Supporting 

Caregivers Act

Sen. Robert 

Casey (D-PA)

Sen. Susan Collins 

(R-ME)

April 11, 

2019

Referred to 

HELP Committee

To amend the Older Americans Act of 

1965 to require the Assistant 

Secretary for Aging to identify and 

disseminate best practices for the 

National Family Caregiver Support 

program, and for other purposes.

7 Senate Credit for Caring 

Act of 2019

Sen. Joni 

Ernst (R-IA)

Sen. Michael 

Bennet (D-CO), 

Sen. Shelley 

Moore Capito (RWV), Sen. 

Elizabeth Warren 

(D-MA), Sen. 

Tammy Baldwin 

(D-WI), Sen. 

Angus King (IME), Sen. Richard 

Blumenthal (DCT), Sen. Jon 

Tester (D-MT), 

and Sen. Chris 

Coons (D-DE)

May 14, 

2019

Referred to 

Finance 

Committee

This bill allows an eligible caregiver a 

tax credit of up to $3,000 for 30% of 

the cost of long-term care expenses 

that exceed $2,000 in a taxable year. 

The bill defines "eligible caregiver" as 

an individual who has earned income 

for the taxable year in excess of 

$7,500 and pays or incurs expenses 

for providing care to a spouse or 

other dependent relative with longterm care needs.
National Academy for State Health Policy 

RAISE Family Caregivers Council Resources, Page 12

8 Senate Lifespan Respite 

Care 

Reauthorization 

Act of 2019

Sen. Susan 

Collins (R-ME)

Sen. Tammy 

Baldwin (D-WI)

April 2, 

2019 

Referred to 

HELP Committee

The Lifespan Respite Care Act of 2006 

was originally enacted to improve the 

delivery and quality of respite care 

services available to families across 

all age and disability groups by 

establishing coordinated lifespan 

respite systems. Currently, thirtyseven States and the District of 

Columbia have received grants under 

the Lifespan Respite Care Act of 2006 

to improve the availability and 

quality of respite services across the 

lifespan.

9 Senate FAMILY Act Sen. Kirsten 

Gillibrand (DNY)

34 Co-Sponsors; 

32 Democrats 

and 2 

Independents

February 

12, 2019

Referred to 

Finance 

Committee

To provide paid family and medical 

leave benefits to certain individuals, 

and for other purposes.

10 Senate Geriatrics 

Workforce 

Improvement Act

Sen. Susan 

Collins (R-ME)

Sen. Robert 

Casey (D-PA) and 

Sen. Richard 

Blumenthal (DCT)

January 31, 

2019

Referred to 

HELP Committee

To amend title VII of the Public 

Health Service Act to reauthorize 

programs that support 

interprofessional geriatric education 

and training to develop a geriatriccapable workforce, improving health 

outcomes for a growing and diverse 

aging American population and their 

families, and for other purposes.