2022 National Strategy 

to Support Family Caregivers: 

Actions for States, 

Communities, and Others 

Developed by: 

The Recognize, Assist, Include, Support, and Engage (RAISE) Act 

Family Caregiving Advisory Council 

& 

The Advisory Council to Support Grandparents Raising Grandchildren 

Technical assistance provided by the Administration for Community Living 

September 21, 2022 
Contents 

Introduction & Purpose.................................................................................................... 1 

Goal 2: Actions to advance partnerships and engagement with family caregivers.......... 8 

Goal 4: Actions to ensure financial and workplace security for family caregivers.......... 21 

Acronyms and Abbreviations......................................................................................... 34 

Goal 5: Actions to expand data, research, and evidence-based practices to support 

family caregivers ........................................................................................................... 27 

Goal 3: Actions to strengthen services and supports for family caregivers ................... 13 

Goal 1: Actions to Increase awareness of and outreach to family caregivers ................. 3 

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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: 

Goals of the National Strategy to Support Family 

Caregivers: The Strategy outlines a series of 

approaches to achieving key outcomes in support 

of the 5 goals of the Advisory Councils: 

GOAL 1: Achieving greater awareness of and 

outreach to family caregivers 

GOAL 2: Advancing partnerships and 

engagement with family caregivers 

GOAL 3: Strengthening services and supports for 

family caregivers 

GOAL 4: Improving financial and workplace 

security for family caregivers 

GOAL 5: More data, research, and evidencebased practices to support family caregivers 

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. 

The results of these RFIs contributed to the development of two suites of 

recommendations for supporting family caregivers of all ages, across circumstances, 

and in every corner of the nation. These recommendations were outlined in two 

reports to Congress in 2021: 

♦ RAISE Family Caregivers Act Initial Report to Congress 

♦ SGRG Act Initial Report to Congress 

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 

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council discussions. This tool enabled the Advisory Councils to identify and 

categorize multiple factors (drivers) 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. 

♦ In Their Own Words-Family Caregiver Priorities and Recommendations: 

Results from a Request for Information details and categorizes family 

caregiver priorities from the 1600+ RFI responses. 

♦ Building a National Strategy to Support Family Caregivers: Findings from Key 

Informant Interviews and Stakeholder Listening Sessions analyzes and 

presents the results of the key informant interviews and listening sessions. 

♦ What Family Caregivers Need: Findings from Listening Sessions details the 

twelve 60-minute listening sessions held with small groups of family 

caregivers of different caregiving situations. 

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. 

These actions are neither prescriptive nor all-inclusive. Rather, they are intended to provide 

a variety of options so that readers of the Strategy can easily envision a role for themselves 

or their organizations. Many of the actions contained in this document complement the 345 

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commitments made by the federal government in support of the Strategy. Therefore, federal 

agencies and programs may wish to review these actions to identify additional opportunities 

to collaborate, coordinate outreach, enhance program development and administration, and 

more effectively target family caregivers with available resources at more levels. 

Goal 1: Actions to increase awareness of and outreach to 

family caregivers 

Increased awareness and recognition of 

family caregivers creates a better 

understanding, appreciation, and 

motivation for cross-disciplinary and crosssector collaboration to affect changes—in 

new products, services, policies, and 

legislation—that recognize, assist, include, 

support, and engage family caregivers in 

meaningful ways. 

Vision for Goal 1: To optimize the wellbeing of family caregivers by increasing the 

recognition of family caregivers among 

society and the number of people who selfidentify as family caregivers who know 

where to go for trusted information. 

In addition, many people do not think of themselves as “caregivers.” Instead, they consider 

themselves to be a parent, grandparent, sibling, child, spouse, partner, friend, or neighbor 

who is simply doing what needs to be done. As a result, they often do not look for resources 

and supports and are not counted in data collection efforts. Effective outreach is crucial to 

connecting family caregivers to the resources available to support them. This is particularly 

important in multicultural or immigrant communities and with family caregivers with limited 

English proficiency. 

To create a system that truly supports families, multiple sectors—public and private—must 

work together. No single sector can do it alone. There is a particular need to engage the 

private sector—employers and industry—to better recognize and support employees who 

are family caregivers. 

Advisory Council members noted that only when caregiving is widely recognized as a 

universal life experience will family caregivers themselves feel comfortable asking for and 

accepting the support they need. 

Actions to increase awareness of family caregiving and outreach to family caregivers could 

include: 

Increased awareness and recognition of family caregivers creates a better understanding, 

appreciation, and motivation for cross-disciplinary and cross-sector collaboration to affect 

changes—in new products, services, policies, and legislation—that recognize, assist, 

include, support, and engage family caregivers in meaningful ways. 

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 State agencies, municipal governments, and tribal leaders can ensure publications 

and websites include updated, accurate and culturally/linguistically appropriate 

representations of family caregiving and/or the supports and resources that are 

available. A first step can be to conduct an assessment of communication tools and 

develop a plan for improvement over time. (Also supports Goal 3) 

 State entities, tribal councils, community leaders, CBOs, FBOs, and school districts 

can launch locally focused public outreach campaigns that align with the national 

caregiver awareness campaign described in the Strategy. 

♦ Implement these efforts in collaboration with local stakeholders such as 

Chambers of Commerce, Parks and Recreation Departments, and local 

health departments. To the extent possible, use meaningful local data about 

family caregiving prevalence and needs. (Also supports Goal 5). 

♦ Include family caregivers from target populations in the planning and release 

of these campaigns. (Also supports Goals 2 and 3). 

♦ Craft messages and products that are culturally competent, linguistically 

appropriate, accessible to people with disabilities, and sensitive to the specific 

populations for which they are intended. 

♦ Disseminate information through multiple distribution channels (social media, 

local news outlets, community advocates and faith leaders, materials created 

by schools and business, etc.) to reach family caregivers in a range of 

culturally and ethnically diverse communities. 

♦ Partner with leaders in tribal communities to include information and outreach 

about the unique needs of American Indian and Alaska Native family 

caregivers in existing community events and programs. 

♦ Conduct outreach to unserved and underserved communities using ethnic 

media and in-language campaigns, as applicable to inform caregivers and 

care recipients in target populations about the local, state, and federal 

supportive services and resources available to them. 

 State agencies, tribal leadership, and municipal governments can issue official 

guidance (including to education, health, social services, law enforcement, 

corrections, emergency management, and human resources departments) defining 

“family caregivers” and “family” in the widest possible terms. This will increase 

awareness about the breadth of caregiving, maximize inclusion in supportive 

programs, and provide guidance on language and communication access. (Also 

supports Goal 3). 

♦ In the definitions of family caregiving, acknowledge grandparents, kin, close 

friends, neighbors, and others outside of the traditional family structure. 

♦ Use terminology that is inclusive of and welcoming to racially and ethnically 

diverse communities, American Indian and Alaska Natives, and LGBTQIA+ 

communities. 

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 State governors, mayors, and other community leaders can use their tools of office 

to highlight the tremendous value that family caregivers bring and urge support and 

recognition. For example, proclamations signed during National Family Caregiver 

Awareness month create a product that can be shared by others and often result in 

media coverage, both of which help increase the reach of the message. 

 Business leaders and civic organizations can recognize entities, including employers 

of all sizes, that actively recognize, assist, or support caregivers with a “family 

caregiver-friendly” designation. This allows the public to choose to patronize or apply 

for employment at these caregiver-friendly businesses. This can also increase public 

awareness and appreciation of caregiving. Examples of “caregiver-friendly” policies 

may include: 

♦ Discounts for family caregivers (Also supports Goal 4). 

♦ Special shopping hours for family caregivers (Also supports Goal 3). 

♦ Displays that highlight family caregiver-focused services and products (e.g., 

meal planning, assistive technology, medical supplies). 

♦ Expanded and rebranded care programs in gyms and retail stores to offer 

care and meaningful engagement to care recipients of all ages, including 

children and adults with disabilities. (Also supports Goal 3). 

♦ Feature diverse caregivers and the full range of family caregiving situations in 

print and media advertising. 

♦ Connect family caregivers with their state assistive technology programs so 

they can learn about assistive technology options that allow care recipients to 

communicate and live more independently. Examples include augmentative 

and alternative communication (AAC), fidget devices, electronic tablets, 

weighted blankets, noise-canceling headphones, etc. (Also supports Goal 3). 

♦ Train staff to recognize behavioral signs that a family caregiver or care 

recipient may have unique needs, such sensitivity to noise, dementia, speech 

aphasia, and memory loss, as well as when and how to offer and provide 

assistance to family caregivers. (Also supports Goal 2) 

 State agencies, community leaders, school districts, health care providers, and 

others can identify opportunities to increase awareness in the local community of the 

unique strengths of--and challenges faced by--kinship families and grandfamilies. 

Kin and grandparent caregivers on the Advisory Councils noted such awareness 

efforts are critical to reducing stigma and common misconceptions about kinship 

families. Examples of possible approaches include: 

♦ Educate communities about the causes of kinship families and grandfamilies 

to correct common misunderstandings that often lead to negative 

perceptions. 

♦ Incorporate kinship families and grandfamilies into communication materials 

that are not “about” caregiving, such as advertisements, websites, and 

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recognition programs, to underscore that they are one of many types of 

families in the local community. 

♦ Educate kin and grandparent caregivers about how to become foster parents 

and how they can receive services such as respite care if they choose to take 

that path. 

♦ Create resources such as booklets and brochures about kinship care, 

including materials specifically developed for the reading level and interests 

of children and teens in kinship families. 

 Health care and social service systems can ensure that all intake forms adopt 

inclusive language to help family caregivers self-identify. For example, intake forms 

could include a field for the name of the designated family caregiver which could 

serve as a reminder to family members (and providers) that the assistance they are 

providing is a form of “family caregiving.” (Also supports Goal 2). 

 Health care and community-based service systems can partner to equip primary 

care providers and pediatricians with screening tools and accurate and timely 

information about family caregiving and local community supports so that they can 

make appropriate referrals. Especially important is up-to-date information about local 

respite options. (Also supports Goal 3). 

 CBOs can train first responders and emergency department personnel to identify 

family caregivers and grandfamilies during emergency situations so that they can 

effectively integrate family caregivers into the patient’s or child’s care team. (Also 

supports Goal 2). 

 Researchers, academic institutions, and funders can invest in research and 

education to better understand how cultural beliefs about caregiving affect caregiver 

identification and to identify the best ways to train and educate diverse family 

caregivers to prepare them for the role. (Also supports Goal 3). 

 Communities of faith can regularly survey parish memberships to proactively identify 

caregivers among their parishioners. 

 States can fund improvements to their No Wrong Door/Aging and Disability 

Resource Systems to expand their ability to support family caregivers and the people 

they support in making informed decisions about their long-term services and 

supports and to help them access public and private programs. (Also supports Goal 

4). 

 States can configure their caregiver support programs, including those funded under 

the Older Americans Act National Family Caregiver Support Program, to expand and 

improve outreach, particularly to underserved populations. Specifically, they can 

budget for translation and interpretation of materials and events; refine requirements 

for outreach activities, such as the number of outreach events an organization must 

complete, the locations or populations that should be targeted; and types of media to 

utilize; and ensure outreach information is reflected in family caregiving program 

regulations and manuals. 

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 State agencies can compile a statewide inventory of existing resources and 

programs for family caregivers. This resource can be used to create a caregiver 

support locator function so that caregivers can quickly locate the services they need 

in their area. 

♦ Establish and support collaboration among state agencies, CBOs, FBOs, and 

municipalities to promote utilization of this support locator resource as well as 

other existing resources. (Also supports Goal 3). 

 State agencies, CBOs, FBOs, and service providers can collaborate with national 

organizations to develop culturally appropriate toolkits and resource guides that can 

be used by local communities. 

♦ Develop materials with input from the communities they are intended to 

reach. 

♦ Distribute materials through trusted community channels such as: community 

ambassadors, community health workers; faith leaders and community 

leaders; hairdressers and barbers; pharmacists; primary care physicians and 

pediatricians; teachers. (Also supports Goal 3). 

♦ Include topics such as naturalization resources, consumer rights, descriptions 

of local family/caregiver leave benefits within the state, the value of caregiver 

assessments and respite care; how to talk to children about caregiving, and 

how to navigate complex care systems with multiple points of entry, and other 

topics about which they may be unfamiliar. (Also supports Goal 3). 

♦ Create materials in multiple languages. (Also supports Goal 3). 

 Community-based organizations can explore opportunities to partner with media and 

community relations companies to develop age-appropriate literature to help children 

in kinship families understand that they are not alone in their experiences. (Also 

supports Goal 3). 

 Private payers (including health plans and health systems) can collaborate with 

CBOs to reach underserved populations of family caregivers (including caregivers of 

color and those in rural communities) and improve the reach of evidence-based 

programs. (Also supports Outcome 5.3). 

 All stakeholders can seek out innovative ways to conduct outreach and data 

collection efforts that are specific to their sector. (Also supports Goals 3 and 5). 

Examples include: 

♦ Colleges and universities: Provide outreach targeted to students in a wide 

variety of majors, including but not limited to social work and psychology, to 

inform the next generation of professionals about the impact of caregiving on 

families. 

♦ Faith-based organizations: Identify family caregivers in their congregations 

and organize members to offer to bring them a meal, help with chores, or 

assist with respite. 

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♦ Homeowners’ associations: Maintain lists of family caregivers who may need 

help with home maintenance or snow shoveling. 

♦ Restaurants and businesses: Offer caregiver discounts, caregiver business 

hours, or special menu items that celebrate caregivers. 

 State agencies, CBOs, FBOs, providers, and courts can strengthen provisions to 

ensure compliance with current federal law requiring access to services for older 

adults, people with disabilities, and caregivers with limited English proficiency. (Also 

supports Goals 3 and 4). 

To create a system that truly supports families, multiple sectors—public and private—must 

work together. No single sector can do it alone. There is a particular need to engage the 

private sector—employers and industry—to better recognize and support employees who 

are family caregivers. 

 All stakeholders can establish coalitions that bring together state officials, major 

employers, universities, philanthropic organizations, CBOs, FBOs, family caregivers 

and care recipients, and others with clearly articulated mission statements, work 

plans, sustainable funding, and projects. See Massachusetts Caregiver Coalition as 

a model. (Also supports Goal 4). 

 States can convene or expand family caregiving taskforces to draw in stakeholders 

with lived experience and professional expertise to work together on behalf of family 

caregivers in the state. Activities can include developing an inventory of existing 

programs; recommended actions that improve family caregiver supports and 

address the other issues described in the Strategy; and ways to leverage the 

findings of the task force to increase funds for caregiver support services and/or 

pass supportive legislation. 

 State agencies can develop and implement state plans (e.g., State Plans on Aging, 

State Developmental Disability Plans) for supporting family caregivers. These efforts 

should include representation from a broad range of stakeholders, including diverse 

caregivers and care recipients themselves. 

Goal 2: Actions to advance partnerships and engagement 

with family caregivers 

Family caregivers help navigate complex, 

often fragmented systems of providers and 

services. They often serve as de facto care 

coordinators, physically perform, and/or 

either make, or support the person they care 

for in making, treatment decisions. Despite 

their integral role in the care of others, their 

Vision for Goal 2: To recognize, 

engage, and support family, kin, and 

grandparent caregivers as key 

partners in the provision of health care 

and long-term services and supports. 

own needs and preferences are rarely assessed using evidence-based tools; they are often 

excluded from care planning; and when systems change, the impacts of such changes on 

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family caregivers are rarely considered. In addition, family caregivers and their needs are 

rarely identified or addressed in care plans. Actions like the following are needed to address 

systemic barriers to including family caregivers in care teams and ensuring their needs are 

represented in care plans. 

Involvement of Caregivers as Part of the Care Team 

 Organizations employing medical providers and direct care workers can adopt 

systems, such as Health Insurance Portability and Accountability Act (HIPAA)-

compliant dedicated messaging platforms, that allow family caregivers and other 

members of the care team to communicate directly and easily (with the approval of 

the care recipient). 

 States can increase integration of family caregivers into care teams through 

considering the following: 

♦ Require training in how to engage with and interact with family caregivers as 

part of accreditation standards. 

♦ Add regulatory language that requires providers of health and social services 

to designate the family caregiver as part of the care team, if they have not 

done so already. 

♦ Allow flexibility for family caregivers to purchase and operate telehealth for 

care recipients (with the permission of the care recipient). 

♦ Define requirements to include caregiver information within health systems 

technology, such as electronic health records, and incorporate caregiver/user 

feedback when developing technology. 

 Health insurance plans, payers, and others can create financial incentives, such as 

new billing codes for health care providers, to encourage and enable consultation 

with family caregivers as part of the care process (with the consent of the person 

receiving care). 

 Health care and social service systems can champion the inclusion of caregivers in 

existing processes and protocols by taking the following steps: 

♦ Explore ways to incorporate family caregivers earlier in the care process. 

♦ Identify ways to include family caregivers in existing workflows and 

processes. 

♦ Ensure frontline workers can dedicate time to train family caregivers in how to 

support their loved one or share resources to help them learn. Examples 

include in-home or community-based visits to observe natural routines and 

scaffold support for caregivers or brief online/video training (2-3 minutes) that 

focuses on specific types of equipment, procedures, and/or tasks. 

♦ Create checklists for staff about family caregiving-related issues. Also, create 

information tools for family caregivers, such as key questions to ask providers 

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and contact information for caregiver services, such as: help desks, chat 

services, peer support networks, or other sources of live caregiver support. 

♦ Develop job aids for health care professionals and discharge planners to 

integrate self-care for the family caregiver into a patient’s care plan. 

♦ Extend the concept of a “post-surgery care coach” to support family 

caregivers when a patient comes home from the hospital; incorporate these 

services into discharge planning 

♦ Hire and train dedicated staff for family caregiver engagement (caregiver 

engagement specialists), including specialists trained in conditions such as 

Alzheimer’s disease and related dementias. 

♦ Review and strengthen protocols for incorporating information about family 

caregivers and caregiving into electronic health records systems and the care 

process. 

♦ With the approval of the care recipient, include family members in care 

planning by discussing the patient’s current condition and desired goals and 

outcomes for treatment and identifying any additional needed supports and 

services. 

♦ Collect data to determine the real-world return on investment of integrating 

family caregivers into the care team. (Also supports Goal 5). 

♦ Encourage managed care organizations (MCOs) or advocacy organizations 

to create an inventory of best practices for private industry family caregiver 

resources. 

 Health care vendors can centralize patient data so that it can be accessed by family 

caregivers, providers, and homecare workers, with appropriate permission from the 

patient/person receiving support. 

 Health care IT firms can develop “identity and access management (IAM)” apps that 

aggregate information from multiple patient portals so that patients and caregivers 

can access an integrated dashboard of health information from multiple providers 

without having to use multiple passwords and log on credentials. 

 Customer-serving organizations can put in place policies, processes, and training 

designed to recognize, document, and engage kin, grandparent, and family 

caregivers as part of the care team, as appropriate. 

 Providers of Medicaid home and community-based services (HCBS) programs can 

educate themselves about the need to include family caregivers whenever 

appropriate and possible. 

 Schools, institutions of higher learning, and other learning centers can consider 

opportunities to share the lived experiences of family members as caregivers. 

Examples include guest lecturers, pre-recorded interviews, or similar opportunities. 

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 Municipalities and states can adopt policies that allow designation of family 

caregivers as essential workers during emergencies and as part of emergency 

planning. 

 Professional organizations and societies can identify ways to acknowledge family 

caregivers' importance across all patient populations and develop guidelines that 

acknowledge the role of caregivers. 

 Health care systems, MCOs, hospitals, and medical schools can study best 

practices and create policies that encourage appointment of family caregivers as 

board members to ensure their voices are included in all levels of policy planning. 

♦ Health care and customer-serving organizations can ensure best practices 

when making decisions by considering all affected stakeholders and 

developing validation criteria to anticipate and prevent unintended 

consequences. 

♦ Health care systems can ensure that policy-setting processes include 

documenting and responding to family, kin and grandparent caregiver needs. 

Caregiver Assessments 

 States can increase use of family caregiver assessments by 

♦ Requiring providers to use evidence-supported caregiver assessment 

protocols. 

♦ Ensuring delivery systems and providers look critically at existing assessment 

tools to make sure they are trauma-informed and culturally competent. 

 Health care and social services systems can bring in an objective third-party to 

assess family caregiver needs, particularly ways that caregivers could receive help 

and support. 

 Government and third-party insurance payers can reimburse health care providers 

for conducting caregiver assessments. 

 Health systems and other health care providers can pilot the use of caregiver 

assessments in a variety of care settings to improve identification of caregivers who 

need services and supports. 

♦ Explore the possibility of adding a caregiver module to off-the-shelf electronic 

health records to facilitate the use of assessments. 

♦ Assess and address the needs of culturally and socially diverse caregivers 

using measures such as the LTC Equality Index, which promotes inclusive 

care for LGBTQIA+ older adults in residential and senior housing. 

Care Transitions and Care Coordination 

 States that have not yet done so can adopt and expand the CARE Act, which 

requires hospitals to inquire if a patient has a family caregiver, include them in the 

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discharge process, and teach them how to provide care after the discharge, if 

needed. 

 States that have passed the CARE Act can consider requiring verifiable 

implementation of the state’s CARE Act for hospital accreditation. 

 Health care organizations in states that have not implemented the CARE Act can 

ensure family caregivers are integrated into transition services when appropriate. 

 Health care organizations and EHR vendors can provide functionality to enable 

viewing, printing, and sharing of health summaries, lab results, and medications for 

the following uses: sharing/data exchange between EHR systems or between 

Patient Health Record (PHR) and EHR systems; integrating caregivers into care 

transitions; and streamlining information access through technology linkages that 

allow a single sign-on to multiple patient portals by family caregivers (with 

permission of the patient). 

 Health care systems can use the patient navigator model as a model for caregiving 

advocacy, especially those caregivers who face barriers to accessing systems of 

support. 

 Providers can implement evidence-based practices for including caregiver supports 

at all points of health care delivery (inpatient, outpatient, LTSS, etc.) and transitions, 

including care coordination when care needs change and when caregivers relocate. 

(Also supports Outcome 5.3) 

 Health care systems can partner with caregiver CBOs, such as AAAs, ADRCs, State 

Councils on Developmental Disabilities, and Centers for Independent Living to 

support family caregiver needs by assessing referral systems and taking steps to 

better include family caregivers where necessary. 

Policy Development 

 Municipalities and states can adopt policies that allow designation of family 

caregivers as essential workers during emergencies and as part of emergency 

planning. 

 Professional organizations and societies can identify ways to acknowledge family 

caregivers' importance across all patient populations and develop guidelines that 

acknowledge the role of caregivers. 

 Health care systems, MCOs, hospitals, and medical schools can study best 

practices and create policies that encourage appointment of family caregivers as 

board members to ensure their voices are included in all levels of policy planning. 

♦ Health care and customer-serving organizations can ensure best practices 

when making decisions by considering all affected stakeholders and 

developing validation criteria to anticipate and prevent unintended 

consequences. 

♦ Health care systems can ensure that policy-setting processes include 

documenting and responding to family, kin and grandparent caregiver needs. 

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Professional Education & Training 

 State agencies can develop educational campaigns about the value of integrating 

caregivers into health care, social services, educational, and child welfare systems. 

These campaigns should be available in a variety of accessible formats and 

languages and should include diverse images and local data that reflects the 

caregiver community. Provide talking points for stakeholders to ensure consistent 

and accurate promotion of the campaigns. 

 Health care systems can educate clinicians and other service providers about the 

experiences and needs of family caregivers by incorporating applicable content 

whenever possible. Examples of content may include: 

♦ Details about the role family caregivers play, challenges of long-term 

caregiving, the importance of early and meaningful engagement, and 

inclusive and accessible communication. 

♦ Stories of the lived experiences of busy caregivers to encourage 

understanding of their emotional journey as well as compassion, empathy, 

and validation during interactions. 

 Health care systems can offer annual training to providers about HIPAA regulations 

to address the misperception that HIPAA precludes communication with family 

caregivers. 

 CBOs can explore ways to educate professionals across a range of service 

industries about consumer rights as they apply to family caregivers. 

Goal 3: Actions to strengthen services and supports for 

family caregivers 

Family caregivers need consistent access to 

an array of programs, supports, goods, and 

services that meet their diverse needs and 

those of care recipients. For these services to 

be effective, they must be person-centered, 

culturally competent, linguistically appropriate, and trauma informed – and more widely 

available. 

Too often, families spend valuable time and energy navigating multiple referrals and 

sources to obtain services and supports. Many are unable to fulfill their needs due to 

inconsistent eligibility requirements, waiting lists, large out-of-pocket costs, or supports that 

are not geared toward their situations. Streamlining access to resources is crucial. 

Many family caregivers need more than support with caregiving tasks. A more holistic 

approach to supporting caregivers ensures access to appropriate and accessible housing, 

home repair support, healthy foods, transportation, and social engagement. These social 

Vision for Goal 3: To expand access 

to programs, services, supports, 

and products to family caregivers. 

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determinants of health contribute to caregivers’ ability to maintain their own well-being and 

that of the care recipients. 

In addition, caregivers need resources to help them plan for the future to meet care goals 

and honor the wishes of the person receiving support. Planning also can help caregivers 

conserve financial resources and maintain their financial well-being. (See more ideas under 

Goal 4.) In many cases, formal systems have not yet been put in place to support structures 

for caregivers to use in crisis response. 

Finally, expanding and strengthening the direct care workforce is a fundamental component 

of improving access to support for family caregivers. Direct care workers provide essential 

services that help to meet the needs of a wide range of individuals including older adults, 

people with disabilities, and children and youth with serious long-term support needs. 

However, there is a shortage of paid workers, especially direct support workers such as 

personal care attendants, home health aides, and nursing assistants. They face low pay, a 

lack of benefits, and few opportunities for career development, which contributes to high 

turnover and creates significant challenges for family caregivers when looking for reliable, 

quality care. 

The following are suggested actions for states, communities, and other stakeholders can 

take to address these and other issues and complement federal efforts to expand services 

and supports for family caregivers: 

Expanding Supportive Services 

 States can prioritize a reform agenda that focuses on family caregivers and the 

direct care workforce. This can include the development of master plans for serving 

the aging population and legislative initiatives to create family caregiver and 

workforce commissions. 

 States can continue to rebalance Medicaid spending to support caregivers in the 

community by funding HCBS rather than institutional settings when appropriate. 

Potential pathways include: 

♦ States can leverage new pandemic-related funding and flexibility within 

Medicaid to expand family caregiver supports. 

♦ Adopt self-directed models and vouchers which allow beneficiaries to select 

and pay for direct care workers—including family caregivers—to provide 

personal care, especially in rural areas and those with limited provider 

options. 

♦ Blend and braid the funding sources of Medicaid, OAA, state funding, and 

other grant programs to improve access to services for family caregivers. 

♦ Require public payors/Medicaid to cover respite services to ensure that 

families have access to it as a standard benefit. 

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 Using the Inventory of Federal Caregiver Support Programs and Initiatives as a 

model, states can compile their own inventories of family caregiver services to better 

understand what programs are available and to identify gaps/duplication and 

opportunities for collaboration. 

 State agencies, municipalities health care systems, private funders, and others can 

explore increasing access to HCBS for family caregivers through pathways such as: 

♦ Expand state-funded programs to serve more low-income populations, rural 

areas, or others not currently eligible for HCBS waivers. 

♦ Ensure the financial viability of CBOs and FBOs, particularly those serving 

historically excluded and underserved populations. 

♦ Create opportunities for collaboration across systems and organizations that 

have (or potentially have) a role to play in supporting family caregivers. This 

may include hospitals, employers, communities of faith, state-based 

philanthropies, etc. 

♦ Explore ways to use OAA Title III funds to enhance or sustain dementia-care 

capabilities in local communities. 

♦ Explore avenues for providing low-interest loans and startup grants to 

encourage the development of adult day services as supports for family 

caregivers and care recipients. 

♦ Develop a universal application process that simplifies and streamlines 

processes for referral to and applying for services and supports across 

funding sources and agencies. 

♦ Build capacity and professional training tracks in the direct care workforce, 

particularly initiatives to encourage retention of trained workers so that family 

caregivers have greater access to assistance and respite opportunities. 

 CBOs and FBOs can collaborate to create or bolster “community ambassador 

programs” to improve access to information and services for family caregivers from 

traditionally unserved and underserved populations. 

 All stakeholders can explore innovative models that increase access to supports and 

services. Examples include: 

♦ Safe and reliable drop-in respite care programs that family caregivers can 

access during emergencies or unanticipated events 

♦ Help desks and hotlines that can address family caregiver stress 

♦ CBOs, FBOs, and research institutions can collaborate, create, and 

disseminate additional education and support options for family members with 

substance use disorders or anxiety and depression. 

 States, counties, and municipalities can seek innovative ways of increasing the 

availability of a range of options for both in-home and out-of-home respite services, 

including vouchers, self-directed programs, and culturally specific programs. They 

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can also explore alternate respite models allowed under the Lifespan Respite Care 

Program and the National Family Caregiver Support Program. These can include 

volunteer and fee-for-service models, mobile adult day care models for rural 

communities, and more. 

 School districts can develop a special orientation at the beginning of a new school 

year for kin and grandparents raising grandchildren. This can include distributing 

information about the programs and services available in their school district or in 

their planning and service area. 

 States; national, state, regional, and local philanthropic organizations; CBOs, and 

FBOs can support the expansion and availability of respite care. Actions include: 

♦ Create greater awareness and acceptance of the need for respite care. 

♦ Develop and disseminate training resources to expand the capacity of respite 

care programs to meet the needs of family caregivers of individuals with 

medically complex care needs and those with intellectual and developmental 

disabilities (ID/DD) 

♦ Increase number of trained direct care workers and volunteers who can 

provide respite. 

 State Respite Coalitions, where they exist, can consider focusing efforts on taking 

greater leadership roles in coordination, across systems and programs. 

 CBOs can examine opportunities to establish volunteer respite programs. 

 Managed care programs can cover respite as a regular part of their service package, 

if not already doing so. Plans can prioritize respite care as part of their supplemental 

services and advocate for use of those services by family caregivers. 

 Advocacy or other organizations can create a ‘What respite means to me’ tool and 

add this resource to existing resource lists and websites. 

 Faith-based communities and other community-based volunteer organizations can 

examine peer respite models and develop programs that leverage best practices. 

This can include: 

♦ Promote federally funded resources to community members, including the 

National Respite Locator, the Eldercare Locator, the Disability Information 

and Access Line (DIAL), and the National Alzheimer’s Call Center 

♦ Tap into church-based volunteer networks 

♦ Establish cooperative respite models that allow caregivers to “purchase” 

support for their family member with volunteer hours. 

♦ Provide adult day services in a supervised group setting within the 

community. 

♦ Develop other volunteer respite or peer support programs. 

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♦ Encourage and support schools and colleges to give credits for providing 

respite as part of a volunteer service requirement. 

 All stakeholders can proactively use the widest possible definition of respite, 

meaning it can include any activity that provides the caregiver with a meaningful 

break. For example, respite services can: 

♦ Give a short break from any caregiving task. 

♦ Engage socially with the care recipient so the caregiver can focus on other 

tasks. 

♦ Teach a child who lives with a grandparent or kin caregiver to ride a bike, 

skateboard, or play a video game. 

♦ Cover housekeeping tasks that would otherwise fall to the caregiver. 

♦ Create space in the caregiver’s day for a nap or a walk. 

Whole-person Approach 

 States and communities can work together to support family caregivers in 

addressing needs that are not “about” caregiving, but which contribute directly to 

health and wellbeing of the caregiver and the care recipient. These can include 

providing appropriate and accessible housing, home repair support, healthy 

foods, transportation, and social engagement. 

 States can take advantage of technical assistance from and/or partner with 

organizations that can help them more effectively obtain funds for supportive and 

low-income housing, such as Section 8 and Section 811 that are specific to 

people with disabilities. 

 States can maximize opportunities to ensure and expand caregivers and the 

people they support have access to web-based information. Suggested 

approaches include: 

♦ Establish a taskforce to identify ways to improve and disseminate web-based 

tools for identifying services and providers in the community 

♦ Adopt programs that provide computers, software, and internet technologies 

to individuals who need these tools. 

♦ Participate in efforts to expand broadband availability. 

♦ Partner with insurance payers to enable caregivers to access and use 

assistive technology. 

 Communities can leverage existing programs like home-delivered meals or other 

delivery services to create “wellness check” programs to maintain health and safety 

for vulnerable community members. 

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Emergency Planning and Disaster Response 

 Health care systems can train employees and providers on how to respond to family 

caregiver and care recipient needs during emergencies and disasters. 

 Long-term care providers can ensure that they seek input from family caregivers and 

care recipients when developing emergency planning procedures and ensure that all 

community members know what to expect in case of emergency. This includes 

continuity of service operations; how caregivers/recipients will be kept informed and 

whom to call; processes for equipment maintenance and replacement and 

replenishment of supplies; transportation alternatives, and how the service will 

address essential basic needs such as access to medicine. 

 CBOs, FBOs, and other community/volunteer groups can put together essential 

survival packages and deliver to families in need during emergencies. (Also supports 

Outcome 3.6) 

Legal and Financial Services 

 Financial institutions and national advocacy organizations can collaborate to curate 

or develop financial planning resources geared for family caregivers. Institutions can 

disseminate these resources in several ways, such as printed brochures distributed 

during in-person banking and as reminders and links within other resources related 

to financial planning, including eligibility for Medicaid and other benefit programs. 

 Stakeholders can work together to expand legal services for kin/grandparent 

caregivers: 

♦ States can encourage attorneys who specialize in the custody/guardianship 

of children in kin/grandparent care to provide pro bono services. 

♦ Family and juvenile court systems can work to provide educational seminars 

to assist kin and grandparent caregivers who come through their systems to 

understand their rights and obligations. 

♦ Legal assistance programs can add pro bono succession planning for 

children in kinship families as part of the menu of services supported by the 

Older Americans Act to assist with advance planning. 

♦ States can encourage state and local bar associations to train and develop a 

corps of attorneys who are willing to handle pro bono cases to assist kin and 

grandparent caregivers in developing documents to establish and protect 

their rights, including succession planning and/or a determination of custody 

should the caregiver no longer be able to perform that duty, and to apply for 

benefits and services that may be available for the children. 

♦ Local legal services programs, including local protection and advocacy 

programs, can work with community organizations on outreach to kin or 

grandparent caregivers to inform them of their rights and obligations. Local 

legal services programs can also work with state and local courts and bar 

associations to ensure adequate representation for the caregivers. 

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 Employers, financial planners, and life/annuity/long term care insurers can 

incorporate future planning and considerations for family caregiving circumstances 

into all financial planning services more generally so that caregivers have necessary 

documents in place when the unexpected happens. 

Expanding and Strengthening the Direct Care Workforce 

 States can prioritize a direct care workforce reform agenda that incorporates 

stakeholder input to inform state legislation and policy. This can be done through 

establishing legislative initiatives, master plans on aging, and direct care workforce 

collaboratives within state Medicaid, aging and disability agencies. 

 States can launch a communications campaign to publicize the value of the direct 

care work to taxpayers, employers, and businesses. (Also supports Goal 1) 

 States can coordinate workforce policy and resources across agencies, including 

partnerships between the states’ departments of labor, workforce boards, and 

community college systems. 

 States can address the recruitment and retention of direct care workers through the 

following activities: 

♦ Increase wages, benefits, and training for direct care workers under Medicaid 

that provides for a livable income. 

♦ Create quality incentive payments and workforce quality licensing 

designations for providers that promote a positive and robust work 

environment. 

♦ Create interoperable training programs that can be used across agencies and 

states. 

♦ Create state registries of direct care workers. 

♦ Collaborate with the federal government and other states to collect consistent 

data on outcomes of existing workforce efforts. (Also supports Goal 5). 

 Home care agencies and educational institutions can partner with state agencies to 

support the above efforts through activities such as: 

♦ Set clear and consistent quality and care delivery standards. 

♦ Enhance training and job advancement opportunities. 

♦ Create career paths that includes opportunities to transition into related 

careers. 

♦ Create peer mentoring opportunities. 

♦ Expand credentialling options, including offering options for maintaining 

credentials when moving to a new state or jurisdiction. 

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♦ Participate in national data collection efforts to more fully understand the 

issues affecting the direct care workforce at the state and local levels. (Also 

supports Goal 5). 

Additional Actions to Support Kin and Grandparent Caregivers 

 Child welfare systems can improve their outreach, engagement, and supports to 

relatives by: 

♦ Lead their agencies with a “kin-first” philosophy. 

♦ Develop written policies and protocols that reflect equity for children with kin 

and recognize their unique circumstances. 

♦ Identify and proactively engage kin for children at every step. 

♦ Create a sense of urgency for making the first placement a kin placement. 

♦ Prioritize kin licensing. 

♦ Support permanent families for children. 

♦ Create a strong community network to support kinship families and 

grandfamilies. 

 CBOs and FBOs can partner with legal groups to: 

♦ Create training programs for judicial professionals to educate them about 

kinship/grandparent needs. 

♦ Create toolkits for court officials to give to families with resources and 

information. 

 Training programs for new foster parents can consider creating tailored versions 

specifically for kinship and grandparent caregivers rather than expect kin and 

grandparent caregivers to “translate” materials made for other audiences. 

 Instructional designers can prioritize trainings for kin and grandparent caregivers that 

are flexible, available in-person or remote, feature lived experience, and offer a 

choice of formats. Possible topics include trauma, behavioral supports, legal 

relationships, access to benefits; managing relationships with birth parents, 

supporting family members with substance use disorders or serious mental illness, 

talking with children about their birth parents. 

 All stakeholder organizations, including those not focused on kinship families, can 

review materials and trainings for appropriate (non-stigmatizing) and consistent 

language about caregivers. 

 Mental health professionals can develop expertise to work more effectively with 

clients in kinship families and grandfamilies: managing relationships with birth 

parents; interacting with family members with substance use disorders or serious 

mental illness; and talking with children about their birth parents. 

2022 National Strategy to Support Family Caregivers: Actions for States, Communities, and Others | ACL | 20 
 Health care providers, especially those who accept Medicare and Medicaid, can

ensure they offer flexible timing options for mental telehealth, mental health, and 

tele-trainings (e.g., weekend and evening appointments). 

Goal 4: Actions to ensure financial and workplace security 

for family caregivers 

Personal finances and future financial 

security are a significant source of 

stress for family caregivers. Many of 

them worry about how to cover 

current and future costs associated 

with health care, health supplies and 

equipment, housing, and other 

Vision for Goal 4: To alleviate the financial 

challenges associated with family caregiving, 

prevent financial ruin, and reduce out-ofpocket expenses for the caregiver, including 

employment protections. 

services to accommodate the needs of the person receiving support. Family caregivers, 

especially parents of children with lifelong disabilities, worry about the future. 

Family caregivers often must respond to the immediate health and financial needs of the 

person receiving support with little time to prepare. This can increase both emotional and 

financial stress The financial implications of caregiving can unfold for decades and affect 

future generations because it is often so hard for caregivers to put money aside for the 

future. 

Financial planning tools and resources for people with disabilities, including special needs 

trusts and other financial products and services, can empower the family caregiver and the 

person receiving support. Family caregivers also struggle to balance their caregiving 

responsibilities with employment. More than half of working age adults are family 

caregivers. Many of them have had to miss work because of their caregiving roles, and 

some of them have ultimately had to reduce their working hours, take a leave of absence, or 

leave the workforce altogether. Flexible policies and practices can provide caregivers with 

employee benefits and the tools to balance work and caregiving role and allow them to 

remain in the workforce longer. 

In addition, the cost of long-term services and supports themselves can create challenges. 

Medicare does not cover these expenses, and few people have private long-term care 

insurance or other mechanisms to pay for care. Medicaid is the primary payer of LTSS, 

covering just over half of all spending for such services and supports in the nation. 

However, access is limited to Medicaid HCBS services that enable family caregivers to 

continue to provide care, and most people receiving support from family caregivers do not 

meet the financial eligibility requirements for public assistance. 

Public input to the Councils suggested that a significant portion of the long-term actions 

related to financial security require Congressional changes or federal regulatory action. 

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(See the Strategy for a resource list of legislative changes that are aligned with the 

Caregiving Advisory Councils’ recommendations.) These changes are anticipated in future 

years as the overall culture increasingly recognizes the value of supporting caregivers. In 

the interim, states, communities, and other stakeholders can take actions to advance 

financial protection for caregivers and pave the way for future change. These include: 

 States can promote a culture within agencies/systems that fosters recognition of 

family caregiving and what it entails. By describing caregiving and its duties, rather 

assuming the concept is familiar, agencies/systems can encourage caregivers to 

recognize their role and start to self-identify as a caregiver. As a result, they are 

more likely connect to training programs, financial resources and other supports to 

address financial challenges. (Also supports Outcome 1.1) 

 State agencies, CBOs, and FBOs can review all outreach materials, website content, 

and intake forms related to financial issues for cultural sensitivity and to ensure that 

they do not perpetuate harmful stereotypes. (Also supports Outcome 1.1) 

 Businesses can implement a “Caregiver Credit” program of discounts and other 

incentives for long-term care-related products, school supplies, and other items 

commonly purchased by family caregivers for their care recipients. (Also supports 

Outcome 1.1) 

 AAAs can promote Title III E services to support family caregivers. They can also 

seek out or enhance non-traditional partnerships, such as with banks and financial 

planners, by reaching out with information and ideas for financial programs to benefit 

and support caregivers. (Also supports Outcome 1.3) 

 States and human resources organizations can invest in developing outreach 

materials to educate employers and employees about available benefits programs 

that support caregivers, such as leave, workplace flexibility, anti-discrimination laws, 

and tax credits. (Also supports Outcome 1.3) 

Financial Planning 

 School districts can partner with college and university admission programs to 

provide kin and grandparent families information on the financial aspects of 

attending college. They can also distribute the Consumer Financial Protection 

Bureau (CFPB) suite of tools on how to pay for college, compare college courses, 

and financial offers as well as how to apply for student loans. 

 Public/private partnerships can explore ways to advance interest-free loans through 

targeted, tax-free funded donations or tax advantaged savings accounts (such as 

ABLE accounts). 

 Software companies and application developers can develop and/or refine financial 

education and planning toolkits for kin, grandparent, and family caregiver 

populations. 

 Financial counselors, coaches, and advisors can volunteer to assist kin, grandparent 

and family caregivers apply for the services and benefits they're qualified to receive. 

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 Financial institutions can explore partnerships with CBOs and Kinship Navigator 

programs to develop financial planning tools designed for kin and grandparent 

families who will be applying for college. 

 Employers, banks, and credit unions can develop Caregiver Master Classes for 

financial education and planning. These should be short, incremental trainings for 

busy family caregivers. Other tools include Lifelong Learning Institutes at 

universities, where classes are free and within the community. 

 CBOs and Volunteer Income Tax Assistance (VITA) sites can refer kin, grandparent, 

and family caregivers to financial counselors. They can also distribute resources 

such as CFPB’s Your Money Your Goals toolkit which was designed to help people 

plan for financial goals. (Also supports Goal 3). 

 Caregivers themselves may want to review the Life Course Framework, which is 

available for all types of caregivers and any age of care recipient. It helps individuals 

and families think about their current realities and goals for different aspects of their 

lives and engage in future or long-term planning to achieve those goals. 

Employment Protections, Flexibilities, and Leave Policies 

 States should enact legislation to prohibits discrimination against caregivers in the 

workplace. 

 States can consider expanding on the federal FMLA program by expanding the 

definition of caregiver, the length of leave available, the size of employers covered, 

and family caregiver protections. 

 Employers and state agencies can create multi-stakeholder coalitions to support 

employers’ efforts to recognize, honor, and support working caregivers. (The 

Massachusetts Caregiver Coalition is a good example of this.) 

 States can conduct assessments to better understand how many caregivers in the 

state have access to paid leave either through public or private programs. (Also 

supports Outcome 5.1) 

 States can create incentives to encourage employers to be more caregiver-friendly 

via tax incentives for businesses and/or certification programs. 

 States can make family responsibilities “good cause” for leaving a job, allowing 

caregivers who quit a job for caregiving to be eligible for unemployment insurance. 

 Employers of all sizes can leverage AARP’s Supporting Caregivers in the 

Workplace: A Practical Guide for Employers to facilitate efforts to adopt supportive 

workplace policies and best practices for caregivers: 

♦ Commit to embracing flexibilities and lessons learned during the pandemic, 

notably that the workday can be defined beyond traditional hours. 

♦ Create flexible workplaces that allow for remote and telework options, leave 

sharing, job sharing, and comp time. This also includes structuring position 

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descriptions in such a way as to optimize the success of workplace 

flexibilities. 

♦ Add employer-determined flexibilities for family caregivers, as they define 

their new normal in the wake of the pandemic. 

♦ Promote Employee Assistance Program (EAP) programs that offer 

meaningful support for caregivers as part of existing packages of free and 

confidential services to employees who have personal and/or work-related 

problems. 

♦ Encourage culture change to remove potential stigma associated with 

participating in EAP programs through the workplace. (Also supports 

Outcome 1.1) 

♦ Offer flex spending plans that help caregivers pay for certain extraordinary 

health care expenses, while allowing spending accounts to roll over. 

♦ Develop specific messaging on the impacts of family caregiving, which can 

lead to greater awareness among employees of the financial implications. 

♦ Offer flexible Human Resources (HR) options, such as caregiver flex time. 

♦ Distribute information and build awareness, either through HR or EAP, on the 

of types of tax credits available to caregivers 

 CBOs can educate EAP vendors about locally available family caregiver resources, 

especially Kinship Navigator Programs and peer groups, so that employees who use 

EAP programs have an opportunity to learn about caregiver services that may 

benefit them. (Also supports Outcome 1.3) 

 Employers can expand benefits packages that make LTSS more affordable for 

working family caregivers (e.g., respite care, adult day care, caregiver training, 

offering voluntary LTC insurance, and allowing sick leave for family caregiving). 

(Also supports Outcome 3.1) 

 HR associations can educate their memberships and other employers about 

challenges family caregivers face so that managers and supervisors understand the 

needs of their caregiving employees: 

♦ Explain that changes in caregiving situation can lead to unexpected requests 

for leave benefits and flextime. 

♦ Encourage them to make available services and supports that benefit 

caregivers, both in the workplace (such as EAPs) and in the community. (Also 

supports Outcome 1.1) 

♦ Encourage them to support workplace job transitions through development of 

core competencies for position descriptions and structured assignment 

transitions. This can improve employees’ productivity and confidence. 

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Financing Long-Term Services and Supports 

 States can explore options for expanding LTSS financing beyond state Medicaid 

programs. Examples to explore include Washington’s publicly funded long-term care 

program or Hawaii’s publicly funded family caregiver cash benefit called Kupuna 

Caregivers Program. 

 States can create a plan to expand access to long-term care insurance coverage, 

through citizen education campaigns, expanded tax credits for policyholders and 

employers who provide some level of benefit, and providing subsidized plans to state 

employees. 

 LTC insurance providers can explore ways to improve affordability of services and 

supports for kin, grandparent, and family caregivers. 

 States can identify ways to reduce the amount of time caregivers and beneficiaries 

spend filling out repetitive forms to apply for programs that help to fund long-term 

services and supports. 

 States can expand Medicaid programs through self-direction or consumer-direction 

programs that can reimburse family caregivers for providing care. 

 States can consider ways to reduce spousal impoverishment through efforts such as 

protecting the maximum amount of combined resources for the spouse living in the 

community, as allowed under federal law. 

 States can evaluate existing safety net programs to identify services to assist those 

at risk of going onto Medicaid and provide targeted services for these family 

caregivers. 

 States can develop a plan to provide some health and mental health coverage to all 

children, so kin and grandparent caregivers are not forced to relinquish their parental 

or custodial rights for the child to receive critical mental health support. 

Tax Deductions and Other Financial Assistance Programs 

 States and municipalities can offer “refundable” state and local tax credits to family 

caregivers. 

 States and communities that do offer tax credits to caregivers can explore ways to 

ensure that all eligible taxpayers are aware of these tax incentives. (Also supports 

Outcome 1.3). 

 Financial counselors and advisors can provide information on setting up ABLE 

accounts, tax-free savings accounts that individuals with disabilities and their 

families can use to cover qualified disability expenses. 

 States can collaborate at the regional level to administer Temporary Assistance for 

Needy Families (TANF) and Supplemental Nutrition Assistance Program (SNAP) 

consistently and adopt a shared universal baseline income support for children & 

families. 

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 States can develop universal 

financial assistance application 

forms and methods of submission to 

save caregivers’ time and reduce 

risk of errors on forms. 

 States can consider ways to reduce 

the negative financial consequences 

that often come with taking in a 

relative family member who is 

unable to live alone or a non-relative 

child/grandchild outside of the foster 

system. Possible examples include: 

♦ Develop de facto custodian 

statutes to assist kin and 

grandparent families with 

custody issues. 

♦ Identify legal options for 

defining relationships and 

responsibilities for caregivers 

of children. 

♦ Extend tax credits for family, 

kin and grandparent 

caregivers as compensation 

for years spent out of the 

workforce while providing 

care. These credits can also 

enable caregivers to qualify 

for Social Security later in life. 

♦ Do not consider grandparent 

income when establishing 

benefits eligibility for children 

in informal kin and 

grandparent caregiving 

situations. 

 States can take other actions to 

reduce the financial impact of 

caregiving. For example, states can 

make legal changes so that 

grandparents have the right to: 

♦ Request child support from 

the non-custodial parent. 

Child and Dependent Care Tax Credit: The 

Benchmark for State Tax Credit Policies 

State credits often use the federal Child 

and Dependent Care Tax Credit (CDCTC) 

as a starting point for state initiatives. The 

CDCTC is available to caregivers who care 

for a child under 13, a spouse who is 

incapable of self-care, or a dependent 

adult. The CDCTC can reduce a 

caregiver’s tax liability by up to $3,000 for 

one qualifying individual or $6,000 for two 

or more, though the average credit amount

is about $565. Caregivers may claim a 

percentage of the cost of items primarily 

used for the well-being of the person 

receiving care, determined by their total 

income. The CDCTC is nonrefundable, so 

caregivers can only receive a credit up to 

the amount they owe. 

Since the credit is nonrefundable, 

caregivers cannot receive cash payments 

from the tax credit. Caregivers with lower 

gross tax liabilities have lower potential 

maximum credits, so middle and uppermiddle income caregivers claim most of the 

credit’s benefits and file a disproportionate 

amount of CDCTC claims. Additionally, the

take-up rate is low for caregivers of adults. 

In 2017, roughly 159,000 people claimed 

the CDCTC for care of an adult and 

156,000 for both an adult and a child, just 

2.5% and 2.4% of the total CDCTC 

claimants, respectively. These caregivers 

earned credits worth a total of $119 million 

out of a total of $3.2 billion for the credit as 

a whole. 

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Vision for Goal 5: To promote 

research, identification, and the 

adoption of evidence-based 

practices in caregiver support. 

♦ Pursue the biological parents for child support paid to the grandparent, where 

applicable/desired. 

♦ Pursue the biological parent(s) for child support when applying for TANF. 

♦ Exercise the federal “good cause” exemption which could allow kinship 

families and grandfamilies to receive public assistance without requiring them 

to also seek child support from the child’s biological parents. 

 States can share best practices for implementing the National Family Caregiving 

Support Program (NFCSP) (See Goal 1). 

Goal 5: Actions to expand data, research, and evidencebased practices to support family caregivers 

Despite a growing body of research showing the 

increasing role of family caregivers, limited 

infrastructure exists for the collection of 

comprehensive, population-based data about the 

prevalence of caregiving and the context in which 

care is provided, or the financial, emotional and 

physical impacts of caregiving.1 For example, the 

current national research infrastructure does not take into account the full range of 

caregiving (e.g., episodic, chronic, long-distance, etc.), the relationship between the 

caregiver and the person receiving care, and all care conditions and disabilities. 

Most national surveys do not contain questions that identify family caregivers. As of 2022, 

no major body of work explored the experiences of caregiving youth, and little information 

exists on the impacts of sibling caregiving or the needs of youth who live in families where 

the parents are full-time caregivers to others. Similarly, only very limited available research 

looks at caregivers who themselves identify as disabled. Family caregivers also are not 

included in biomedical clinical trials or medical device development, which means the nation 

has scant information on how the presence of a trained family caregiver influences efficacy 

of medical and social services interventions. 

In addition, data sources that do include caregivers often use inconsistent definitions that 

make it hard for researchers to synthesize data sets to determine things the actual value of 

family caregiving and the potential opportunity costs for caregivers. An enterprise data 

management approach is needed to collect data on family caregiving that are consistent 

and comparable between programs and governmental entities. This will help ensure 

researchers can easily find, analyze, and utilize data to develop, plan, and coordinate 

1 Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine 

Division; National Academies of Sciences, Engineering, and Medicine; Schulz R, Eden J, editors. 

Families Caring for an Aging America. Washington (DC): National Academies Press (US); 2016 Nov 8. 

Available from: https://www.ncbi.nlm.nih.gov/books/NBK396401/ doi: 10.17226/23606 

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resources, services, and supports. It can also help identify and document the economic 

value of family caregiving. 

Even though Goal 5 is the last goal of listed in the Strategy, validated and consistent data 

about the prevalence of family caregiving is a necessary component of other goals. As a 

result, improved data collection around family caregiving should be considered to be among 

the highest priorities. 

Consistent Definitions and Data Sets 

 Researchers can develop a core set of standardized family caregiver questions that 

to add to national surveys. 

 States can ensure their definitions of “family caregiver” are flexible and broad 

enough to encompass populations that are often missed or undercounted (e.g., 

grandchild caring for a sick grandparent) and are inclusive of terminology used to 

describe caregiving activities in other cultures. 

 National, state, regional, and local philanthropic organizations and research 

institutions can improve quality of LTSS by funding or otherwise encouraging 

coordinated and consistent measurement development for HCBS and family 

experiences of care, especially for caregivers of people with Alzheimer’s disease or 

other cognitive or intellectual disabilities. 

 All states can administer the optional Caregiver Module of the Behavioral Risk 

Factor Surveillance System (BRFSS), a system of health-related telephone surveys 

from the CDC that collect state data about health-related risk behaviors, chronic 

health conditions, and use of preventive services. 

 State agencies and CBOs can collaborate to collect data at a single point of entry to 

save administrative costs and reduce the risk of data entry errors and 

inconsistencies. 

 National, state, regional, and local philanthropic organizations; research institutions; 

business leaders; and others can work together to establish a set of standards for 

data collection to enable researchers and other key stakeholders to better evaluate 

research results. 

 Private sector leaders (such as large employers) who have embraced caregiverfriendly policies (e.g., paid family leave) and business coalitions can advocate for 

widespread adoption of standardized metrics for evaluating the efficacy “caregiverfriendly” workplace programs. Such efforts have the potential to ensure that smaller 

employers and those just beginning to offer caregiver programs can easily align their 

efforts with other companies and/or research initiatives, reducing information silos 

and encouraging the sharing of success stories. 

 State agencies and CBOs can support the expansion of research using national 

caregiving-related data sets. 

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 National, state, regional, and local philanthropic organizations; research institutions; 

and CBOs can create a caregiver data repository that caregivers can opt into to 

share data with researchers. The University of Southern California Family Caregiver 

Support Center provides a model. 

 Business coalitions can encourage private-sector entities to use standardized datacollection tools, forms, and definitions of terms. 

 Philanthropic organizations, researchers, CBOs, and other stakeholders, such as 

standards development organizations (SDOs), terminologists, and family caregiving 

interest groups can partner to: 

♦ Encourage widespread adoption of a core minimum data set with 

standardized data (including standardized caregiver definitions, and data 

attributes). 

♦ Educate stakeholders about the value of a coordinated approach to data 

collection about caregiving. (Also supports Outcome 1.1) 

 States can adopt standardized, evidence-based or evidence-informed family 

caregiver assessments and use the results to develop person-centered and familycentered care plans. Tracking outcomes from those plans can help identify 

information that organizations can use to determine future resource needs and 

identify programming gaps. 

 Researchers can make available to other researchers in-progress caregiver 

research via social networking sites for scientists and researchers. (See above Goal 

1). 

 Researchers and states can collaborate to collect more data on interactions between 

family caregivers and the long-term care workforce and share that information with 

other states. (Also supports Outcome 5.3) 

 State agencies, health care systems, insurance payers, and CBOs can adopt 

interoperative and flexible technologies that allow public and private programs to 

streamline their efforts and collaborate with each another. For example, they can: 

♦ Build internet-based interfaces that can be shared by multiple agencies. 

These systems can host application and identification forms that enable 

family caregivers to provide information for use on several forms and 

applications. This can reduce the risk of inconsistent or incomplete reporting 

♦ Adopt tools and processes for reducing risks associated with handling of 

Personally Identifiable Information (PII). Examples include data-anonymizing 

techniques (such as character shuffling, encryption, or term substitution) and 

tools that reduce the risk of data breaches (such as fillable forms that do not 

store information in a database). 

 State agencies, health care systems, insurance payers, and CBOs should embrace 

and participate fully in data collection efforts of the federal government that can 

facilitate future support to caregivers. For example, they can: 

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♦ Proactively seek opportunities to participate in the development, testing and 

deployment of new data collection and research efforts. 

♦ Set aside fiscal resources for data collection and reporting efforts. 

♦ Explore ways to participate in efforts to increase broadband speed and 

access data in communities with low access rate. (Also supports Outcome 

3.5) 

♦ Encourage local health departments to commit to adopting and using the 

Behavioral Risk Factor Surveillance System (BRFSS) questions as part of 

their data collection programming. 

 Private philanthropy can include adequate funding for administrative costs to provide 

incentives for CBOs to include data collection and research learning as a part of their 

programs and services. 

 Funders can also provide CBOs with the administrative and operational support to 

effectively build and standardize the evidence base for improved services and 

supports. 

 States can collaborate to establish data-collection methods that jointly support 

understanding the economic value, and opportunity costs, of family caregiving. 

 States can work with managed care plans and researchers to convene a community 

of practice/learning collaborative and create a collection of vetted best practices for 

different purposes at the state Medicaid level. 

 States can implement evidence-informed programs for family caregivers and collect 

data on those programs to assist researchers with translation and adaptions. 

 States can develop state evaluations of family caregiving programs to identify 

programs that warrant additional study and adaption. 

 CBOs can partner and utilize the Best Practice Caregiving Database as a model to 

create databases of in-kind community-tested programs to facilitate program and 

service development, delivery, and use. 

 CBOs and/or research institutions can translate identified best practices for culturally 

competent use with diverse populations, including kin and grandparent caregivers. 

 States can collaborate with managed care plans and researchers to create 

evidence-based trainings for staff of participating plans. 

 State legislatures can include evidence-based approaches to service delivery in 

state-funded caregiver support programs. 

 States and organizations can build partnerships with universities and academic 

institutions to expand research and funding for evidence-supported family 

caregiving. Best practices include: 

♦ Developing standardized language for funding announcements to facilitate 

collaboration across research entities and sectors using the outcome data. 

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♦ Presenting findings at the national level, including to the Advisory Councils 

and at major conferences, so that evidence-based practices have the best 

chance of being adopted nationwide. 

♦ Sharing data on academic research and evidence-based outcomes with other 

states. 

♦ Ensuring evidence-based approaches identified in research are 

communicated to policy makers for implementation. 

 Caregiving stakeholder organizations can develop a model like pivotal ventures 

investments and incubation to advance evidence-based and evidence-informed 

“incubator projects” that have promising societal impact for family caregivers and 

care recipients within the public domain. 

 College and university research programs can consider opportunities to expand and 

obtain funding for research into evidence-based interventions to support caregiving 

families. 

 CBOs and schools can disseminate kin and grandparent caregiver-specific 

evidence-based programs and evidence-informed practices through non-traditional 

places such as libraries, recreation/daycare centers, and afterschool programs. (Also 

supports Outcome 1.3) 

 Researchers can expand and standardize information collected from family 

caregivers including demographics, prevalence and nature, costs of care, health 

status, specific needs of diverse/multicultural caregivers, and level of unmet need. 

 State Medicaid programs can incorporate caregiver feedback as part of quality 

assurance for state Medicaid programs. 

 Researchers can design studies to include family caregivers across racial and ethnic 

populations by oversampling underrepresented groups as well as examining and 

comparing their outcomes across groups. 

 Academics, business leaders, and national, state, and regional philanthropic 

organizations can work to gather consistent data that builds the business case for 

workplace supports and encourages more businesses to adopt such supports. (Also 

supports Goal 4) 

Research Topics for Future Consideration 

During discussions led by the Caregiving Advisory Councils, several topics emerged about 

which council members noted a need for additional understanding and knowledge. These 

topics are provided below. Students, researchers, and institutions (national, state, regional 

and local philanthropic organizations; publishers; conference organizers; etc.) may wish to 

consider soliciting, funding, creating, and/or widely disseminating work in these areas: 

 Assess the effects on caregivers when individuals with disabilities (particularly those 

with high support needs) are integrated into the workforce through competitive, 

integrated employment practices. 

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 Assess availability, use, and impact of paid leave on caregivers in the state. 

 Evaluate best practices for direct care worker (DCW) workforce training, recruitment, 

and retention 

 Explore the roles of entities such as health care systems, insurance companies, 

FBOs, and tribal communities in expanding research and gathering data about family 

caregivers. 

 Investigate and determine: 

♦ Number of children in kin and grandparent-led families who encounter the 

child welfare system and their outcomes. 

♦ Outcomes of caregiver assessments over time. 

♦ The return on investment for supporting family caregivers across all domains: 

training, support, employment, financial assistance, etc. 

♦ Person-centered outcomes, especially the totality of outcomes that truly 

reflect the end users’ or the caregivers' perceived value of a particular 

intervention, not only the financial incentive 

♦ Capability of local direct care workforces to meet the needs of the state. 

♦ Testing existing evidence-based practices in multiple modes of delivery, such 

as in person, by mail, video, and/or phone. 

 Expand evidence-based research on respite that can be disseminated to the 

appropriate populations or groups. 

 Collect data to show who may need services but doesn’t meet current eligibility 

requirements. 

 Translate clinical-based interventions or care coordination models into more human 

services or social service settings. 

 Translate and adapt other evidence-based approaches (not developed specifically 

for caregiving) for use by family caregivers. 

 Develop a family caregiver study program that uses an interdisciplinary track of 

courses from multiple academic disciples. 

 Identify which care events trigger an assessment update and/or contingency plans 

 Determine where and how cultural expectations and caregiving competencies 

intersect and interact. 

 Collect statistical data on how many people are providing care, their demographics, 

and the context in which care is provided. 

 Determine the commonalities regarding the role of the family caregiver across all 

populations. 

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 Conduct longitudinal studies that research family caregiving over time to identify and 

document the health-related changes related to caregiving. 

 Begin studies about caregiving populations and groups that have not yet been the 

subject of research. 

 Conduct environmental scans to develop an understanding of what currently exists 

that could be implemented; analyze data to figure out why the evidence-based 

practices are not being used. 

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Acronyms and Abbreviations 

 AAAs: Area agencies on aging 

 ACL: Administration for Community Living 

 ADRC: Aging and Disability Resource Centers (ACL) 

 ADRD: Alzheimer’s disease and related dementias 

 BRFSS: Behavioral Risk Factor Surveillance System 

 CBOs: Community-based organizations 

 CDC: Centers for Disease Control and Prevention 

 CDCTC: Child and Dependent Care Tax Credit 

 CFPB: Consumer Financial Protection Bureau 

 CMS: Centers for Medicare & Medicaid Services 

 CSC: Caregiver Support Coordinator (VA) 

 DCW: Direct care worker 

 DIAL: Disability Information and Access Line 

 EAP: Employee assistance program 

 EBPs: Evidence-based practices 

 EDM: Enterprise data management 

 EHR: Electronic health records 

 FBOs: Faith-based organizations 

 HCBS: Home and community-based Services 

 HHS: U.S. Department of Health and Human Services 

 IAM: Identity and access management 

 ID/DD: Intellectual and developmental disabilities 

 JAHF: The John A Hartford Foundation 

 LGBTQIA+: Lesbian, gay, bisexual, transgender, questioning, intersex, asexual, and 

others 

 LTSS: Long-term services and supports 

 MCOs: Managed care organizations 

 NASHP: National Academy for State Health Policy 

 NFCSP: National Family Caregiver Support Program (ACL) 

 OAA: Older Americans Act 

2022 National Strategy to Support Family Caregivers: Actions for States, Communities, and Others | ACL | 34 
 OAEC: Older Adults Equity Collaborative 

 RAISE: Recognize, Assist, Include, Support, & Engage Act of 2017 

 RFI: Request for Information 

 SGRG: The Supporting Grandparents Raising Grandchildren Act 

 SNAP: Supplemental Nutrition Assistance Program 

 TANF: Temporary Assistance for Needy Families 

 VA: U.S. Department of Veterans Affairs 

 VITA: Volunteer Income Tax Assistance 

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