First Principles: 

Cross-Cutting Considerations for Family Caregiver Support 

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 3 

Essential practices that must be embedded in all family caregiver support to ensure familyand person-centeredness 6 

Essential practices to mitigate the impacts of trauma 8 

Essential practices that must be embedded in all caregiver support to advance equity 

and inclusion for diverse populations of caregivers 12 

Essential practices that must be embedded in all caregiver support to strengthen the direct care workforce 15 

Works Cited 17 

Appendix A: Acronyms and Abbreviations 18 

Conclusion 16 

Elevating Direct Care Workers as Family Caregiving Partners 13 

Advancing Equity, Accessibility, and Inclusion for Family Caregivers in Underserved Communities 9 

Addressing Trauma and its Impact on Families 7 

Placing the Family and Person at the Center of All Interactions 4 
First Principles: Cross-Cutting Considerations for Family Caregiver Support Page 3 

Figure 1. Family caregivers themselves are diverse and have heterogeneous 

needs that are shaped by a wide range of factors. Image Source: The 

Gerontologist. 2020 Fe; 60 (Supp 1): S14-S28.

Introduction 

This document is a component of the 2022 National Strategy to Support Family 

Caregivers (Strategy), which was developed by the RAISE Act Family Caregiving 

Advisory Council and the Advisory Council to Support Grandparents Raising 

Grandchildren (SGRG) (collectively, the Advisory Councils) The Strategy empowers 

communities, agencies, and other stakeholder groups to select actions for 

implementation, based on community and family caregiver needs and preferences 

and in consideration of existing supports already in place, resource constraints, and 

other factors 

No two family caregiving situations are exactly the same Because of the diversity of 

the people providing and receiving care and wide variations in the complexity, volume 

and duration of support needed by each person, and other variables (as illustrated in 

Figure 1), there is an almost limitless number of family caregiving configurations 

Caregiving Context 

Living situation/proximity, setting, fnancial 

resources, community resources and characteristics 

Caregiving Characteristics 

Length of caregiving, career experience and skills, 

carer communication and advocacy skills, motivation, 

relationship quality, strength of network, other family obligations 

Person 

Receiving Care 

Relationship, disease/condition, 

functional/cognitive status, abilities and 

strengths, health care needs 

Carer 

Age, gender, sexual 

orientation, cultural background, 

race/ethnicity, employment, religious 

affliation, socio-economic status, 

physical and mental health 
First Principles: Cross-Cutting Considerations for Family Caregiver Support Page 4 

Consequently, no two family caregivers will have exactly the same needs However, 

the Advisory Councils identified four cross-cutting issues that influence the 

caregiving experience and how supports and services are accessed and used While 

many other issues affect family caregivers, the Advisory Councils noted that the four 

issues below must be considered and addressed to achieve success in efforts to 

support family caregivers: 

■ Person- and family-centered approaches: As the U S builds a system of 

coordinated and inter-related responses to the needs of family caregivers, it 

is important that family caregivers themselves—not the needs of systems or 

providers—remain the focal point of each encounter 

■ Trauma and its impact: The experience of trauma, in the lives of caregivers and 

the people they support—including decades-old traumas—has an impact on the 

caregiving journey in ways that must be proactively addressed 

■ Diversity, equity, inclusion and accessibility: While there are limited systems of 

support for family caregivers, the diffculties and impacts of caregiving are not 

equally distributed Caregivers who represent unserved and underserved and/or 

marginalized communities frequently experience greater physical, emotional, and 

fnancial challenges associated with caregiving 

■ The direct care workforce: Even though the Strategy focuses on family caregiving, the 

well-being of the nation’s 4 6 million professional caregivers (also known as direct care 

workers, direct service workforce, direct service providers, etc ) directly infuences the 

ability of family caregivers to provide long-term support (PHI, 2018) Only through the 

development of a robust, well-trained, and well-paid direct care workforce can we 

ensure family caregivers and those they support have access to reliable, trusted, and 

affordable paid supports and assistance when and where they need it 

This document includes essential practices to support each of the above 

considerations These practices should be embedded in the planning for all services 

and supports for family caregivers 

Placing the Family and Person at the Center

of All Interactions 

Family- and person-centered approaches are those that treat people as individuals and 

allow for the investment of time in finding out what is important to them and relevant 

to their treatment and support It is sometimes referred to informally as “individualized 

care” because this approach allows for clinicians to invest time in understanding “what 

matters most to people in their care and creating the conditions to enable these needs 
First Principles: Cross-Cutting Considerations for Family Caregiver Support Page 5 

to be met” (Kulkuski, et al , 2019) When it comes to family caregiving, that distinction 

matters because caregivers themselves are so often forgotten in clinical and social 

service settings where the focus is solely on the needs of the person receiving support 

A person-centered approach that supports family caregivers also would consider the 

caregiver when developing the plan of care, and care plans would be built to balance 

the needs of both, with support from a facilitator as needed and desired The facilitator 

might be a case manager, support coordinator, clinician, peer specialist, or another 

independent staff person who is specifically tasked with helping to facilitate a personcentered plan The methods used to undertake person-centered planning may vary 

based on the unique structures of systems and the unique needs and preferences of 

the people they support But in all circumstances, the relationship between the person 

and the facilitator is a mutually respectful partnership where the plan is co-created with 

the goal of helping the person and their family caregiver achieve their unique vision for 

a meaningful care plan and all activities focus on the person (and family) as a whole 

and are informed by culture and identity 

When the family caregiver knows that their unique voice is heard and valued and the 

preferences and needs of the individual they are supporting are valued, and they are 

confident in their skills and abilities to provide support, they can be more effective in 

their caregiving This confidence will enable them to provide better quality support 

for longer Key to ensuring this confidence is the availability of multi-faceted training 

for family caregivers on the range of issues and tasks they might be called upon to 

handle Additionally, if family caregivers know where to find and access the support 

and services needed for the individuals for whom they are caring and when they can 

access assistance for their own needs, they can more effectively focus on addressing 

the needs of those they support Further, having access to services and supports 

focusing on their unique needs, provided in a way they deem most appropriate, family, 

kin, and grandparent caregivers can realize greater benefit from formal services like 

respite, counseling, or skills training 

Learn More about Putting the Family and Person at the 

Center of All Planning 

Person-Centered Practice as Anchor and Beacon: Pandemic Wisdom from the 

NCAPPS Community These videos are now featured as part of the NCAPPS 

Shorts collection NCAPPS invited all participants to co-create a journal article 

exploring the themes that emerged from the videos Twelve people - a mix of 

disabled and non-disabled NCAPPS staff and colleagues, came together to 

create the paper The paper - and the process - was a very collaborative effort 

and is a reminder of the power of community and connection in advancing 

person-centered thinking, planning, and practice 
First Principles: Cross-Cutting Considerations for Family Caregiver Support Page 6 

Doing With, Not Doing For: What It Takes to Facilitate Person-Centered Planning 

(January 2021) This webinar is a companion to the Five Competency Domains 

for Staff Who Facilitate Person-Centered Planning NCAPPS resource The five 

competency domains are incredibly useful when seeking to hire or train facilitators 

in person-centered planning, developing quality standards, or helping people who 

access services, and their caregivers learn about what they should expect from 

the planning process 

Essential practices that must be embedded in all family caregiver

support to ensure family- and person-centeredness 

A fundamental tenet of person-centered support is that services provided to either 

family caregivers or the person they support should be responsive to the needs of the 

person receiving those services (i e , the family caregiver and the person they support ) 

The needs addressed should be defined by the person, not the service provider In 2020 

the ACL-funded National Center on Advancing Person-Centered Practices and Systems 

(NCAPPS) released five competency domains for professionals and volunteers who 

facilitate person centered planning Person- and family-centered programs should: 

■ Be strengths-based, culturally informed, whole person-focused: An effective 

person-centered care plan is built upon the assumption that people grow, change, 

and can realize personally valued goals It focuses on the universally valued goal of 

living a good life as defned by the individual and their family caregiver 

■ Cultivate connections inside the system and out: Person-centered planning 

actively explores ways to connect the person and their family caregiver with 

both paid (professional) and unpaid (natural) supports This requires nuanced 

understanding of both the individual’s relevant health or disability issues, as well 

as knowledge of the formal and informal services and supports they and their 

caregiver has access to 

■ Prioritize rights, choice, and control: Relationships and planning activities are 

based on respect and the assumption that people and their family caregivers are 

presumed competent and have the right to control decisions that impact their lives 

■ Drive partnership, teamwork, communication, and facilitation: Planning 

interactions and meetings are facilitated in a respectful, professional manner and in 

accordance with person-centered principles and the preferences of both the family 

caregiver and the person receiving support 

■ Include documentation, implementation, and monitoring: The personcentered plan is co-created and captured in writing in a manner that adheres to 

established expectations around person-centered plan documentation The plan 

is valued as a “living document” that is revised as needed based on the person’s 

preferences and evolving situation 
First Principles: Cross-Cutting Considerations for Family Caregiver Support Page 7 

Addressing Trauma and its Impact on Families 

The defining characteristic of trauma is a feeling of helplessness in the face of people 

or events that can cause lasting harm According to the Jewish Federations of North 

American, as many as ninety percent of American adults have been exposed to a 

traumatic event at some point in their lives (Jewish Federations of North America, 

2021) The effects of trauma change people’s core assumptions about themselves, 

their families, and their places in the world In short, they no longer feel safe, which 

has tremendous implications for caregiving, a task that involves trust 

Trauma can linger for decades and be transmitted across generations Yet the topic 

receives little attention Anyone can be at risk of trauma, but some populations are at 

greater risk In November 2021, the Jewish Federations of North America published 

an issue brief developed to inform the development of this strategy As the brief, 

Supporting Family Caregivers of Older Adults with a History of Trauma: Implementation 

Recommendations for the National Family Caregiving Strategy, noted: 

“Post-traumatic stress disorder (PTSD) has been described as chronic in African 

Americans and as one of the most serious mental health problems faced by 

American Indian/Alaska Native (AI/AN) populations... 34% of Latino immigrant 

parents and 29% of Latino immigrant adolescents experienced trauma.” 

(Jewish Federations of North America, 2021) 

These experiences intersect with caregiving in multiple ways For example, trauma 

and PTSD are risk factors for dementia On the other hand, a person who is living 

with dementia may experience a resurgence of difficult-to-manage symptoms that 

are a result of their trauma exposure This can include nightmares, irritability, sudden 

outbursts of anger, anxiety, depression, and hypervigilance These behavioral 

symptoms of PTSD can make the experience of family caregiving particularly 

challenging When people have experienced trauma in medical settings, they may 

be reluctant to receive medical care When caregivers themselves have experienced 

trauma, especially if they have experienced trauma at the hands of their care recipient, 

it can add further complexity to the family caregiving experience 

For kin and grandparent caregivers, exposure to trauma shapes the family caregiving 

journey in both similar and differing ways Some children in kinship families and 

grandfamilies have been exposed to trauma When children have a history of trauma, 

it can manifest in behaviors that are difficult to manage Many people do not recognize 

these behaviors are related to trauma, and so kin and grandparent caregivers may 

find themselves repeatedly having to explain and describe the child’s traumatic 

experiences The challenges are compounded and amplified if the caregiver also has a 

history of trauma 
First Principles: Cross-Cutting Considerations for Family Caregiver Support Page 8 

These are not easy situations to navigate As a result, it is imperative that efforts to 

increase recognition and support for family, kin, and grandparent caregivers include a 

comprehensive, holistic set of strategies that acknowledge trauma as a powerful, yet 

invisible influence in the lives of family caregivers, kin and grandparent caregivers, and 

the people they support 

Essential practices to mitigate the impacts of trauma 

According to the issue brief by the Jewish Federation of North America (2021), the 

following essential practices must be embedded in all caregiver support to mitigate the 

impacts of trauma: 

■ Develop and distribute outreach messages that acknowledge that, while family 

caregiving can be rewarding, it can also be challenging, and that services and 

supports are available to help with those challenges, whatever they may be and 

whatever family issues and personal histories they may have surfaced 

■ Ensure that all language, pictures, graphics, videos, and other communications 

included in outreach materials should be person centered and trauma-informed, 

i e , they should promote a sense of safety, trust, and empowerment, take into 

consideration the language preferences, cultural values, gender dynamics, and 

historical circumstances of the audiences they are developed for, and be created 

and distributed in partnership with those family caregivers 

■ Understand that behaviors that may be perceived as ‘non-compliance’ by health 

care and long-term care staff may in fact be attempts to cope with fear, stigma, and 

feelings of being out of control, and provide a safe space to help individuals and 

their family members feel more in control of their situations 

■ Create environments that promote a sense of safety by limiting potential trauma 

triggers such as loud alarms, unexplained medical procedures or screenings, and 

anything that promotes a sense of lack of control in family, kin, and grandparent 

caregivers or their loved ones 

■ Explore the strengths, challenges, and circumstances of the caregiver and their 

willingness and ability to take on caregiving tasks that may be diffcult, physically or 

emotionally challenging, or re-traumatizing to the care recipient Train providers on 

how to sensitively assess for trauma and on how trauma may be infuencing family, 

kin, and grandparent caregivers and the completion of caregiving tasks 

■ Understand that certain services and supports designed to help older adult clients 

and their family, kin, and grandparent caregivers such as home modifcations 

and future planning can be perceived as emotionally intrusive and therefore retraumatizing, and provide these services in a person-centered, trauma-informed 

way that minimizes trauma triggers and the risk of re-traumatization 
First Principles: Cross-Cutting Considerations for Family Caregiver Support Page 9 

■ Promote peer support among family, kin, and grandparent caregivers by creating 

and advertising information about support groups (in-person and online), online 

forums, and other platforms where family, kin, and grandparent caregivers can 

share resources, challenges, success stories, and lessons learned (Jewish 

Federations of North America, 2021) 

Advancing Equity, Accessibility, and Inclusion for

Family Caregivers in Underserved Communities 

Caregiving affects all families—but it does not affect every family equally On April 

28, 2021, at the request of the RAISE Advisory Council, the Older Adults Equity 

Collaborative (OAEC) provided a briefing that included key actions to address social 

inequities that must be embedded into caregiver support efforts The OAEC speakers 

represented the following organizations: 

■ MHP Salud 

■ National Asian Pacifc Center on Aging (NAPCA) 

■ National Indian Council on Aging (NICOA) 

■ National Center and Caucus on Black Aging (NCBA) 

■ SAGE - Advocacy & Services for LGBTQ+ Elders Center for Healthy Aging 

■ New York Academy of Medicine 

The speakers noted that implicit biases embedded in our laws and public policies, 

and in our public and private institutions, have often left segments of the population 

of caregivers—such as those who support individuals with disabilities and those who 

are members of underserved communities--without any recognition or support For 

example, people with disabilities experience significant health care disparities as a 

result of lower rates of cancer screenings, less access to preventative care and health 

promotion efforts, and societal misconceptions about their needs and preferences 

(Diverse Elders Coalition, 2021) This adds challenges for the caregiver supporting a 

person with a disability Those challenges are further compounded if the caregiver or 

care recipient is a member of an underserved community Family caregivers of color, 

for example, often provide more intensive caregiving, for longer, and have outcomes 

that are worse than those experienced by White caregivers For example, the Hispanic/ 

Latinx older adult population is more likely to have more than one chronic condition 

and their family caregivers are more likely to assist with nursing and medical tasks 

than White caregivers Disproportionate rates of dementia, anxiety, and depression 

have been noted in communities of color, increasing the intensity and number of hours 

of caregiving necessary Forty-five percent of Latino and Hispanic caregivers provide 

32+ hours of care per week, compared to 30% of White caregivers (Diverse Elders 

Coalition, 2021) 
First Principles: Cross-Cutting Considerations for Family Caregiver Support Page 10 

Cultural expectations Culture affects caregiving in nuanced ways that have a broad 

impact on the caregiving experience In some cultures, such as American Indian/Alaska 

Native communities, caring for elders is part of a sacred tradition The individuals 

providing support may not think of themselves as caregivers or may be reluctant to ask 

for assistance In Hispanic cultures, the concept of familismo is the value of putting 

family above oneself, which has implications for self-care, career, and housing choices 

Communicating cultural expectations is further complicated by language differences 

According to the Center for Medicare Advocacy, even though language access is a 

protected civil right, “health care providers from around the country have reported 

language difficulties and inadequate funding of language services to be major barriers 

to access to health care for limited English proficiency individuals and a serious 

threat to the quality of care they receive” (Center for Medicare Advocacy, 2015) It 

also affects family caregiving; in one study, seven out of ten Hispanic/Latinx family 

caregivers report difficulties with medications and coordinating care 

Heterogeneity within communities No community is a monolith Further, within 

a given community, the extent to which differing members of a family choose to 

embrace the norms of another culture also plays a role in shaping family caregiving 

Some caregivers are immigrants who have been in the U S for a short period of 

time Others have been in this country for multiple decades or even generations The 

expectations and lived experiences of a first-generation American grandparent may 

differ considerably from the expectations and preferences of their third-generation 

caregiving grandchild These differences can also lead to differing levels of confidence 

when interacting with the U S government and/or its programs and institutions 

Discrimination Experiences of discrimination in the health care system are more 

common than previously recognized and deserve considerable attention More 

than 20 percent of survey respondents in a representative cross-sectional survey 

reported having experienced discrimination in a health care setting Racial and ethnic 

discrimination was the most common and nearly three quarters of the respondents 

was able to cite more than one experience of discrimination (Nong, Minakshi, Creary, 

Kardia, & Platt, 2020) Some LGBTQ+ older adults are also distrustful of service 

providers, making them less likely to seek assistance until they “reach a point of crisis” 

(SAGE, 2017) Many members of Indian tribes, Alaska Native villages, and the Native 

Hawaiian community express a distrust of the U S government and its institutions 

and policies due to previous experiences of discrimination and cultural erasure Fear 

of discrimination of any kind has a real impact on whether caregivers in underserved 

populations will seek assistance from institutions and systems, either for themselves 

or for the people they support That in turn can have an impact on the burden of care 

required (if medical needs are not addressed) and the caregivers’ own risk of burnout 
First Principles: Cross-Cutting Considerations for Family Caregiver Support Page 11 

Nontraditional family structures It has been said that “love makes a family,” but 

public policies do not consistently recognize non-traditional family structures This has 

implications for LGBTQIA+ caregivers, who, as a result, often report higher levels of 

caregiving stress (SAGE, 2017) While biological family members play a primary role 

in the support of older adults in the general population, members of the LGBTQIA+ 

community who need caregiving support are more likely to rely on partners and friends, 

many of a similar age Mutual caregiving, as it is known, has important implications for 

LGBTQ+ caregivers and the people they support because members of the LGBTQIA+ 

community experience higher rates of many chronic diseases, including depression, 

cardiovascular disease, and obesity Some members have a greater risk of alcohol 

use disorders While caregivers are likely juggling their own issues and conditions 

as well as those of the person or persons they support, they may lack the access to 

health care information and supports and services, including financial protections, 

that biological relatives and spouses can take for granted (Fredriksen-Goldsen, Kim, 

Barkan, Muraco, & Hoy-Ellis, 2013) 

A similar challenge faces caregivers in kinship families and grandfamilies; the health 

care, social services, and educational systems with which they must interact in their 

caregiving do not recognize or support their role as caregiver of the child This leaves 

many kin and grandparent caregivers outside of the systems (education, child care, 

health care, etc ) designed to support parents and legal guardians of children 

Intersectionality: By 2030, nearly 3 in 10 older Americans will identify as a member 

of at least one diverse or underrepresented group (Diverse Elders Coalition, 2021) As 

the overall number of diverse older adults grows, there will also be a corresponding 

increase in the number of caregivers grappling within multiple intersection challenges 

When caregivers experience multiple challenges, they are not merely additive, but 

rather have a compound effect that hampers a person’s ability to provide quality care 

over time As people age, these issues are often further exacerbated These challenges 

have only been intensified during the pandemic, worsening preexisting stressors, 

strains and both physical and mental health outcomes for diverse caregivers and 

their older loved ones The impact of the pandemic has been particularly significant 

in the caregivers in communities of color As a result, when it comes to addressing 

disparities, recommendations that suggest a universal approach should be avoided s 

Despite the ubiquity of caregiving, caregivers are not a monolith, and their needs must 

be addressed individually 

The National Resource Center on LGBTQ+ Aging offers a series of facts sheets with 

information on how age, race, sexuality, and disability intersect and steps that can be 

taken to strengthen supports for marginalized groups 
First Principles: Cross-Cutting Considerations for Family Caregiver Support Page 12 

Spotlight on Underserved Caregiving Populations 

■ American Indian/Alaska Native/Native caregivers may not identify as such 

because honoring elders is so deeply embedded in their cultures As a result, they 

may not seek assistance when they need it 

■ Asian American and Pacifc Islander caregivers represent over 50 unique 

ethnicities and 100 different languages, many of which have differing perspectives 

on caregiving 

■ Black and African American caregivers provide more intensive care, over 

more time than White caregivers and contributing to greater negative fnancial 

consequences 

■ Children who provide care to parents, grandparents, and siblings miss school 

and social/developmental opportunities, but there are few programs or resources 

that acknowledge the kind of caregiving they provide 

■ Hispanic/Latino caregivers are more likely to be the sole caregivers for their 

loved ones placing them at risk of isolation and mental health strain 

■ Kin and grandparent caregivers open their arms and homes to children who 

cannot stay with parents, yet, despite their age and limited resources, few have 

access to fnancial assistance 

■ LGBTQIA+ caregivers are more likely to become caregivers at a younger age and 

across multiple situations (parents, siblings, partners, & friends), increasing their 

risks of long-term fnancial challenges, social isolation, and burnout 

Essential practices that must be embedded in all caregiver support to

advance equity and inclusion for diverse populations of caregivers 

■ Include in all relevant legislation specifc provisions that promote cultural and 

linguistic competence for all racial and ethnic groups, American Indian/Alaska 

Native, as well as for LGBTQIA+ caregivers, across physical and mental health, and 

well-being 

■ Prioritize actions that protect caregivers (and the people they support) who 

experience multiple forms of discrimination and are particularly vulnerable to 

exploitation because of race, ethnicity, gender, gender identity, sexual orientation, 

religion, income level and national origin 
First Principles: Cross-Cutting Considerations for Family Caregiver Support Page 13 

■ Prioritize actions that specifcally ensure compliance with current federal law 

requiring access to services for older adults, people with disabilities, and family 

caregivers with limited English profciency 

■ Advance provisions that support family caregivers regardless of immigration status 

or that of the person they support 

■ Develop programming, research, and policy for caregivers in Indian Country in 

collaboration with tribes and tribal communities, including their internal review 

boards and tribal governments 

■ Amend data collection, project assessments, and reporting requirements in 

legislation to ensure that all racial and ethnic groups, American Indians/Alaska 

Natives, as well as LGBTQIA+ older adults, are represented and provided the 

opportunity to participate in research 

■ Collect data in a way that builds trust with caregivers by providing education about 

its purpose and use 

■ Recruit, promote, and support a diverse, culturally competent health care and 

social services workforce that represents the culture of the community 

■ Close service gaps by reviewing screening and intake for cultural competency 

■ Ensure that all language, pictures, graphics, videos, and other communications 

included in outreach materials include and reference same sex couples and racially 

and ethnically diverse older adults, people with disabilities, and caregivers 

Elevating Direct Care Workers as Family

Caregiving Partners 

Family caregivers cannot support their loved ones alone Just as family caregivers 

often step in when paid care is not available for a loved one, when family caregivers 

are not able to provide support or need additional support or respite, they may 

turn to professionals who assist older adults and disabled people of all ages with 

essential daily tasks across a range of settings This workforce includes people 

identified by a range of different job titles including personal care attendants, home 

health aides, job coaches, direct support professionals, residential workers and 

others who provide similar supports  While titles, required skills, and responsibilities 

differ, all direct care workers should have access to quality jobs with adequate 

training and support, compensation, voice in their working environment, an 

opportunity for growth through a career ladder or lattice, and broad recognition of 

their value in the long-term supports system 
First Principles: Cross-Cutting Considerations for Family Caregiver Support Page 14 

 

Meeting the needs of family caregivers is inextricably linked to the need to provide 

better pay, working conditions, and career pathways for people who provide caregiving 

support as a vocation The current shortage of workers and frequent turnover not 

only compromises the ability of older adults and people with disabilities to live in the 

community, but it can also compromise their health and safety The need for direct 

care workers, which already far exceeds supply, is projected to grow significantly in 

the next decade as the number of older adults and people with disabilities increase 

and as government spending shifts to prioritize home and community-based services 

The recruitment, retention, and development of a competent workforce is critical to 

providing home and community-based services so that older adults and people with 

disabilities can live, work, and participate in the community 

Despite the criticality of these roles, direct care workers remain vulnerable to low 

wages and unstable working conditions In 2020, DCWs providing HCBS were paid 

a median hourly wage of $12 98 (PHI, 2021) Nearly half of these workers live in 

low-income households, and more than half rely on some form of public assistance 

Significant gender, racial, and ethnic disparities exist in the direct care workforce: 

Nearly 90 percent of direct care workers are women, three in five are people of color, 

and a third are immigrants to the U S (PHI, 2021) 

Many direct care positions are part-time jobs, which means that while workers may 

put in long hours of care (sometimes cobbling together multiple clients from differing 

agencies or at multiple care facilities), they are rarely eligible for the compensation 

benefits that accompany full-time employment This includes sick leave, paid holidays, 

and adequate education on important topics that could improve the quality of their 

work, such as dementia competency training Nor are there many career advancement 

opportunities for direct care workers When it comes to workplace safety, the situation 

is equally challenging The rate of on-the-job injuries experienced by direct care 

workers is three times higher than that of the average U S worker As a result of these 

challenges, turnover in this industry is high and it is hard to fill empty positions The 

shortages that result from this can leave family caregivers vulnerable to coverage and 

care quality gaps when a worker doesn’t show up for a shift or they find themselves 

having to train a replacement 

Developing a ready and well-qualified direct care workforce through better pay and 

working conditions, training, and improved career pathways, on the other hand, has 

the potential to reduce burnout among informal or family caregivers by increasing 

access to a range of support options That in turn could allow caregivers to provide 

high-quality support for longer 
First Principles: Cross-Cutting Considerations for Family Caregiver Support Page 15 

Learn More about Strengthening the Direct Care Workforce 

■ Direct Support Professionals and the Disability Community 

■ Feeling Valued Because They Are Valued: A Vision for Professionalizing the 

Caregiving Workforce in the Field of Long-Term Services and Supports 

■ Investing in Direct Care Workforce Interventions to Improve the Quality of Services 

and Supports for Older Adults and People with Disabilities 

■ DSW Core Competency Project 

■ The CMS National Direct Service Workforce Resource Center 

■ Coverage of Direct Service Workforce Continuing Education and Training within 

Medicaid Policy and Rate Setting - A Toolkit 

■ Overviews of Workforce Challenges and Effective Improvement Strategies 

■ Strengthening the Entry-Level Health Care Workforce: Finding a Path 

Essential practices that must be embedded in all caregiver support to

strengthen the direct care workforce 

■ Expand the pipeline of potential caregivers by recruiting nontraditional workers to 

the LTSS feld and changing immigration policy so more caregivers will seek out 

jobs in the LTSS feld 

■ Enhance education and training, both initial and ongoing, so professional caregivers 

will feel well-prepared to carry out increasingly complex care tasks, and so home 

care organizations, nursing homes, assisted living communities, consumers and 

their families will have confdence in them 

■ Provide access to career ladders that offer opportunities beyond the traditional 

nursing path, including careers in social work, therapy, and management positions 

that use their relationship skills 

■ Increase compensation so direct care professionals can earn at least a living wage 

■ Prepare universal workers who could become direct care professionals in home and 

community-based settings, nursing homes and assisted living communities, and 

other settings 
First Principles: Cross-Cutting Considerations for Family Caregiver Support Page 16 

■ Reform the LTSS fnancing system by using insurance-based dollars to provide 

additional and more consistent funding for LTSS and to help ensure that the LTSS 

workforce receives adequate compensation 

Conclusion 

It can be said that if you have met one family caregiver, you have met one family 

caregiver This common adage reflects the fact that caregivers are people first 

and caregivers second They must be recognized as such if this strategy is to be 

successful 

The cross-cutting considerations discussed here should be foundational to the 

development of all programs and initiatives to support family caregivers When they are 

embedded in policy development, they ensure programs deliver services and supports 

that recognize the individual needs, previous experiences, concerns, and situations of 

the people receiving support while also seeking to redress the deep inequities that are 

often present among diverse and marginalized populations, including family caregivers 

and direct service workers 

The Advisory Councils expect that the ideas and actions presented in this Strategy will 

serve as the first steps in creating a holistic and systemic approach to family caregiver 

support Such an approach will ensure that as change happens, it will occur in an 

aligned fashion so that all populations of family caregivers receive the recognition and 

support they need and deserve 
First Principles: Cross-Cutting Considerations for Family Caregiver Support Page 17 

Works Cited 

Center for Medicare Advocacy (2015) Racial and ethnic health care disparities 

Diverse Elders Coalition (2021) Caring for those who care 

Fredriksen-Goldsen, K I , Kim, H -J , Barkan, S E , Muraco, A , & Hoy-Ellis, C P 

(2013, October) Health disparities among lesbian, gay, and bisexual older adults: 

results from a population-based study 103(10), 1802-9 

Jewish Federations of North America (2021) Supporting family caregivers of older 

adults with a history of trauma: Implementation recommendations for the National 

Family Caregiving Strategy 

Kulkuski, K , Peckham, A , Ashlinder, G , Gagnon, D , Wong-Cornall, C , McKillop, A , 

 Sheridan, N (2019, July 23) What is Important to Older People with Multimorbidity 

and Their Caregivers? Identifying Attributes of Person Centered Care from the User 

Perspective International Journal of Integrated Care, 19(3), 4 

National Academies of Sciences, Engineering, and Medicine (2016) Families caring 

for an aging America Washington (DC): The National Academies Press 

Nong, P , Minakshi, R , Creary, M , Kardia, S L , & Platt, J E (2020) Patient-reported 

experiences of discrimination in the US health care system 3(12) 

PHI (2020) Direct care workers in the United States: Key facts Bronx, NY 

PHI (2018) The direct care workforce: Year in review (2018) Bronx, NY 

PHI (2021) Direct Care Workers in the United States: Key Facts Bronx, NY 

Stewart, Daniel B , Kent, Alex (2017) Caregiving in the LGBT community: A guide to 

Engaging and Supporting LGBT Caregivers through Programming SAGE 

Wolff, J , Freedman, V , Mulcahy, J , & Kasper, J (2020) Family caregivers’ 

experiences with health care workers in the care of older adults with activity limitations 

JAMA Network Open, 3(1) 
First Principles: Cross-Cutting Considerations for Family Caregiver Support Page 18 

Appendix A: Acronyms and Abbreviations 

■ ACL: Administration for Community Living 

■ ACS: American Community Survey 

■ ADA: Americans with Disabilities Act 

■ ADPI: Alzheimer’s Disease Programs Initiative (ACL) 

■ BRFSS: Behavioral Risk Factor Surveillance System 

■ CBOs: Community-Based Organizations 

■ CDC: Centers for Disease Control and Prevention 

■ CFPB: Consumer Finance Protection Bureau 

■ CMA: Center for Medicare Analysis 

■ CMS: Centers for Medicare & Medicaid Services 

■ CSC: Caregiver Support Coordinator (VA) 

■ CSP: Caregiver Support Program (VA) 

■ HCBS: Home and Community-Based Services 

■ HHS: U S Department of Health and Human Services 

■ IDD: 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 

■ NAC: National Alliance for Caregivers 

■ NAPA: National Alzheimer’s Project Act 

■ NASHP: National Academy for State Health Policy 

■ NFCSP: National Family Caregiver Support Program (ACL) 

■ NHATS: National Health and Aging Trends Study 

■ OAA: Older Americans Act 

■ OAEC: Older Adults Equity Collaborative 

■ PCPID: President’s Committee for People with Intellectual Disabilities (ACL) 

■ RAISE: Recognize, Assist, Include, Support, & Engage 

■ RFI: Request for Information 

■ SGRG: Supporting Grandparents Raising Grandchildren 

■ VA: U S Department of Veterans Affairs