Racial and Ethnic Differences in Unmet Needs Among Older Adults Receiving Publicly-Funded Home and Community-Based Services

Abstract

Background

Unmet need for home and community-based services (HCBS) may disparately impact older adults from racial and ethnic minoritized groups. We examined racial and ethnic differences in unmet need for HCBS among consumers ≥65 years using publicly-funded HCBS.

Methods:

We analyzed the National Core Indicators-Aging and Disability survey data (2015-2019) from 21,739 community-dwelling HCBS consumers aged ≥ 65 years in 23 participating states. Outcome measures included self-reported unmet need in six service types (i.e., personal care, homemaker/chore, delivered meals, adult day services, transportation, caregiver support). Racial and ethnic groups included non-Hispanic Black, Asian, non-Hispanic White, Hispanic, and multiracial groups. Logistic regression models examined associations between race and ethnicity and unmet need, adjusting for socio-demographic, health, and HCBS program (i.e., Medicaid, Older Americans Act, PACE) characteristics, and use of specific service types.

Results:

Among 21,739 respondents, 23.3% were Black, 3.4% were Asian, 10.8% were Hispanic, 58.8% were non-Hispanic White, and 3.7% were multiracial or identified with other races/ethnicities. Asian and Black consumers had higher odds of reporting unmet need in personal care than White consumers (adjusted odds ratio [aOR], 1.45, p value <0.01; and aOR, 1.25, p<0.001, respectively). Asian and Black consumers had significantly higher odds of unmet need in adult day services versus White consumers (aOR, 1.94, p<0.001 and aOR, 1.39, p<0.001, respectively). Black consumers had higher odds of unmet need versus non-Hispanic White consumers in meal delivery and caregiver support services (aOR, 1.29; p<0.01; and aOR 1.26, p<0.05, respectively). Race and ethnicity were not significantly associated with experiencing unmet need for homemaker/chore or transportation services.

Conclusions:

Future research should identify driving forces in disparities in unmet need to develop culturally appropriate solutions.

Introduction

Home and community-based services (HCBS) are publicly funded services that provide support with routine daily activities for older adults living with disabilities.¹ HCBS can include personal care, home-delivered meals, and transportation services that are provided in community-based settings. HCBS may be funded by Medicaid state plans and waivers as well as services via the Older Americans Act.¹ HCBS consumers are diverse in age, level of disability, and race and ethnicity. Over the past several years, understanding and addressing racial and ethnic disparities in long-term services and supports like HCBS have become a priority as policymakers and providers prepare for a larger, more diverse aging population. Services are designed to support independence, social engagement, and community living. However, there exist no universal measures of service quality, although one key component of HCBS is to address consumers’ unmet needs for assistance.²

Racial and ethnic disparities in health, function, and access to care for older adults in the United States have been extensively documented. Older adults who are Black, American Indian or Alaska Native, or Native Hawaiian or other Pacific Islander experience worse health and healthcare outcomes relative to their White counterparts.^3–6 For example, Black older adults more often report receiving assistance with daily activities like eating or dressing and have a greater risk of developing mobility limitations. On the other hand, Hispanic older adults, despite have higher risk profiles than non-Hispanic older adults, often have report better mental health outcomes, lower rates of several chronic conditions, and lower mortality rates.⁷ Asian older adults generally have health outcomes similar to or better than White older adults,³ although those living in poverty are particularly vulnerable to experiencing health disparities. Recent evidence shows that low-income Asian older adults experience more physical, cognitive, and functional disabilities relative to non-Asian older adults.^8,9 Still, despite varied health-related experiences, older adults from racial and ethnic minoritized groups who require support from HCBS may be particularly impacted by disparities in service availability, and quality, resulting in poor quality of life outcomes or increased health care utilization (e.g., hospitalizations).¹⁰

Unmet need has been documented in broader, community-dwelling populations. Prior studies have examined the repercussions of unmet need (i.e., adverse consequences).¹¹ Adverse consequences due to unmet need refer to instances when individuals go without completing daily activities (e.g., bathing, showering, or eating) because no one is available to help them.^12–14 Adverse consequences due to unmet need are particularly pronounced among Medicare-Medicaid dual-enrollees, those living with greater levels of disability, and older adults from racial and ethnic minoritized groups.^11,12,15 For instance, Black, Hispanic, and foreign-born older adults are more likely to experience adverse consequences due to unmet need than their White counterparts.^15–17 This may be explained, in part, by the fact that racially and ethnically minoritized older adults are often living with greater levels of disability with fewer financial resources than White older adults.¹⁸ Despite the aforementioned work, unmet need for specific services is less understood. This lack of information has resulted in a knowledge gap that prevents service providers and HCBS stakeholders from having a complete understanding of the needs of the people they serve.

One key barrier to increasing the knowledge base on unmet needs in HCBS is the lack of available data sources that include information about service use as well as potential quality metrics. Existing studies are dated and often focus on one state. For example, a 2007 study focusing on HCBS in Massachusetts found that the most prevalent unmet needs included the need for information on disability-related services and legal rights, specialty care, care management services, and household assistance.¹⁹ More recently, efforts like the National Core Indicators-Aging and Disability (NCI-AD) survey offer promising data to better understand the self-reported care experiences of HCBS consumers. One study found that the prevalence of unmet need for assistance varied by type of assistance (e.g., need for help with self-care versus assistive technology).²⁰ In the same study, Non-Hispanic White older adults were less likely to experience unmet need, compared to all other racial and ethnic groups. The paper did not focus on unmet needs related to specific service use (e.g., delivered meals and transportation), which is necessary to gain an understanding about possible interventions.

The goal of the present study is to describe racial and ethnic differences in unmet need for services in publicly funded HCBS. Understanding unmet need in HCBS can help identify additional goals for services and can identify target groups for intervention if the prevalence of unmet need varies by race and ethnicity. As HCBS continue to expand in response to older adult preferences to age in their communities, understanding racial and ethnic disparities in unmet needs in HCBS is a foundational step towards ensuring equitable care delivery for diverse groups.

Methods

Data and Study Population

Our data were drawn from the NCI-AD annual survey. Data for this study were drawn from four survey waves administered between 2015 to 2019. The NCI-AD is a collaboration between ADvancing States, Human Services Research Institute, and state Medicaid, aging, and disability agencies to track care quality.²¹ Data for the NCI-AD survey are collected through annual surveys administered by state agencies to a sample of at least 400 older adults and adults with physical disabilities receiving HCBS. Sampling and recruitment strategies vary by state, and states may construct samples from Medicaid HCBS waiver and state programs, Older Americans Act programs, and nursing homes, so long as sampling methods align with the parameters of the NCI-AD protocol.²² States are also responsible for securing their own surveyors, but all surveyors undergo standardized training led by the NCI-AD National Team. Surveys are conducted between July 1 and June 30 for each survey year. Before interviews, comprehensive background information about survey participants (e.g., demographics, personal attributes, legal status, received services, clinical diagnoses) is gathered from state and program administrative records and linked to survey responses. Data assessing care access and quality are collected through interviews conducted in-person, virtually, or by phone. A full description of state program availability and sampling can be found in national reports of the NCI-AD.²² Additionally, the need for a proxy respondent is determined at the time of the interview. Participants respond to eight questions about their home environment and relationships (Supplemental Table 1). Interviewers determine the need for a proxy based on whether the participant can respond to the questions in full.

There were 32,450 adults aged 65 and older who completed the NCI-AD between 2015 and 2019. Respondents were excluded if they were living in residential care settings (e.g., nursing homes) (n=10,037), missing race/ethnicity (n=664), or living in a state with high missingness (n=10). The final analytic sample included 21,739 community-dwelling respondents aged 65 and older receiving publicly funded services in 23 participating states.

Measures

Outcome measures

We measured service use and self-reported unmet needs (dichotomized as yes or no) in select service types generally recognized as services offered through HCBS, including: personal care, homemaker/chore, delivered meals, adult day services, transportation, and caregiver support.²³ A full list of services is provided in Supplemental Table 2. The NCI-AD collects service-related information from state administrative records. We identified older adults with unmet needs using responses to the following, “Do the long-term care services you receive meet your current needs and goals?” We coded respondents who indicated that their current services do not meet their needs as having an unmet need. In a follow-up question, respondents identified which of the six services (allowing for multiple responses) would help them meet their needs (Supplemental Table 2). We also include data collected in the Background Information section of the survey about specific service use, which was categorized based on the following question: “What type of paid long-term care supports is the person receiving?” Responses to this item are retrieved from state administrative records, including Medicaid Management Information System data.

Independent measures

Our key independent measure of interest is self-reported racial and ethnic identity. The NCI-AD ascertains race and ethnicity through a series of “check all that apply” items. We categorized race and ethnicity as non-Hispanic Black, Asian, non-Hispanic White, Hispanic, and other/Multi-racial groups The “other” category included respondents who did not check “Hispanic or Latino” and did check “American Indian or Alaska Native,” Pacific Islander,” “Other race not listed,” or checked multiple races.

We included potential confounders, such as sex, age, and dichotomous measures reflecting health conditions (diagnosis of Alzheimer’s Disease and Related Dementias [ADRD], physical disability, developmental disability, brain injury, mental health condition). Each health condition was documented via a yes/no response. We also include information on Medicare enrollment status, program funding the survey respondent’s HCBS (Medicaid, Older Americans’ Act [OAA], Program for All-Inclusive Care for the Elderly [PACE]), and the presence of legal guardian. We also included categorical measures reflecting marital status (single, married/domestic partner, separated/divorced, widowed) and ZIP Code Rural-Urban Commuting Area (RUCA) classification. Living arrangement categories included alone, with family (with a spouse or partner, other family), or non-family (friends, live-in caregiver, or others). Overall health was gathered from the survey participant and categorized as follows: fair/poor, good, and excellent/very good. We also included a measure reflected whether a proxy (e.g., family caregiver) completed the survey. More details about information included can be found in the Supplemental Methods.

Statistical Analysis

Respondent characteristics were summarized as percentage or median (IQR) overall and conditional on race and ethnicity. Then, for each service, we estimated the percentage of HCBS consumers of a given race and ethnicity reporting unmet need for that service. We examined associations between race and ethnicity and unmet needs after adjusting for socio-demographic, health, and funding program (Medicaid, Older Americans Act, PACE) characteristics, as well as use of specific service types using logistic regression models with random intercepts for survey year and state.

Missing data were accounted for via multiple imputations by chained equations and all point estimates were pooled over 20 independent imputed datasets.²⁴ Only two variables had more than 10% missingness: mental health condition (30%) and legal guardian status (15%). All analyses were performed in R v4.1.3.²⁵ All statistical tests were two-sided with p<0.05 considered statistically significant; no adjustments were made for multiple comparisons.

Results

Characteristics by race and ethnicity

NCI-AD participants were mostly female (72%), and averaged 77 years old (Table 1). Over half (54%) were living with a physical disability. Twenty percent reported having a mental health condition, and 16% were living with ADRD. Nearly all participants were enrolled in Medicare (93%). Most participants (71%) were receiving services by way of Medicaid waiver services. Almost one in 10 (8.6%) had a legal guardian. Forty-one percent of participants were widowed. Most participants (71%) lived in metropolitan areas. Half of participants (52%) lived alone, and 56% of participants reported poor or fair health. Thirteen percent of participant surveys were completed by a proxy.

Table 1:

Characteristics of older adult, community-dwelling respondents to the NCI-AD 2015-19 by race and ethnicity averaged across multiple imputations. Values are column percentages unless indicated otherwise.

Characteristic	Overall 100% N=21,739	Asian 3.4% n=743	Black/ African-American 23.3% n=5,061	Hispanic/ Latino 10.8% n=2,353	White 58.8% n=12,785	Other/Multiracial 3.7% n=797
Female (vs not Female)	72%	66%	74%	70%	73%	72%
Age (Years; Median (Q1, Q3))	77 (71, 84)	79 (73, 85)	76 (69, 83)	78 (72, 85)	77 (71, 84)	76 (70, 83)
Health conditions
ADRD	16%	24%	15%	20%	15%	19%
Physical Disability	54%	48%	54%	55%	54%	60%
Developmental Disability	7.9%	1.6%	6.5%	1.9%	10%	5.0%
Brain Injury	11%	4.2%	9.0%	6.0%	13%	12%
Mental Health Condition	20%	16%	15%	19%	21%	20%
Medicare-Enrollee	93%	78%	92%	95%	94%	89%
HCBS Program
Medicaid	71%	90%	67%	76%	70%	88%
OAA	24%	8.7%	29%	10%	27%	9.0%
PACE	4.3%	1.7%	4.4%	14%	2.8%	2.6%
Have Legal Guardian	8.6%	5.0%	8.6%	14%	7.8%	10%
Marital Status
Single	13%	7.6%	19%	9.8%	11%	12%
Married/Domestic Partner	20%	33%	13%	26%	21%	27%
Separated/Divorced	25%	16%	25%	22%	27%	23%
Widowed	41%	43%	42%	42%	41%	38%
ZIP Code RUCA Classification
Metropolitan	71%	98%	82%	93%	60%	79%
Micropolitan	15%	1.8%	10%	3.9%	21%	8.2%
Rural	5.2%	0.1%	1.5%	1.1%	7.8%	3.6%
Small town	9.0%	0.6%	5.8%	2.4%	12%	9.5%
Living Arrangement
Alone	52%	27%	50%	41%	57%	45%
Family	43%	70%	47%	57%	36%	51%
Non-Family	5.0%	2.6%	3.0%	2.1%	6.5%	4.0%
Overall Health
Poor/Fair	56%	62%	59%	65%	53%	63%
Good	31%	27%	31%	26%	32%	28%
Very Good/Excellent	13%	11%	10%	9.6%	15%	9.1%
Proxy	13%	33%	14%	18%	9.3%	18%

Note. National Core Indicators – Aging and Disability Survey; N=21,739 community-dwelling older adult HCBS consumers.

¹%; Median (IQR)

Nearly two-thirds of participants were White (58.8%). Black respondents comprised 23.3% of participants, followed by Hispanic (23.3%), Other/multiracial (3.7%) and Asian (3.4%) participants. There were several notable differences in older adult characteristics by race and ethnicity. Asian, Hispanic, or other race/multiracial older adults experienced higher rates of ADRD than White and Black older adults. Asian older adults were least often enrolled in Medicare (78%), while Hispanic older adults were most often Medicare-enrolled (95%). Several differences existed across service programs. Asian older adults most often received services via Medicaid waiver or state plan (90%). Black participants received HCBS via Medicaid least often (67%) but more often received services via OAA (29%) than other groups. Hispanic older adults more often participated in PACE (14%) than other groups. Asian older adults were most often married (33%), living in metropolitan areas (98%), and living with family (70%).

Service use and bivariate unmet need

We present proportions of unmet need for specific services race and ethnicity in Figure 2. A table describing racial and ethnic differences in unmet needs across HCBS type utilization can be found in Supplemental Table 3). Unmet need was most often experienced for homemaker/chore, personal care, and transportation services, regardless of service use across most racial and ethnic groups. Alternatively, unmet need for adult day, caregiver support, and delivered meal services (regardless of service use) did not exceed ~6% for any racial and ethnic group. Unmet need for homemaker/chore services ranged from 10.5% for other race/multiracial consumers to 13.8% for Black consumers. For personal care services, unmet need was least often experienced by Hispanic consumers (8.6%), and most often experienced by Asian consumers (14.4%). Unmet need for transportation services ranged from 9.1% for Hispanic consumers to 11.9% for Asian consumers.

Figure 2.

Figure represents estimated adjusted odds ratios of experiencing unmet need in a given HCBS service vs White consumers.

Multivariate analyses

We present results from fully adjusted logistic regression models assessing associations between race and ethnicity and unmet need in each service in Figure 3 . Each model includes an adjustment for utilization of the service of interest. For example, after adjusting for all covariates, and use of personal care services, relative to White participants, unmet need in personal care was more often experienced among participants who were Asian (aOR 1.45; p<0.01) or Black (aOR 1.25, p<0.001). Similarly, Asian (aOR 1.94; p<0.001), and Black (aOR 1.39; p<0.001) participants were more likely to experience unmet need in adult day services than White participants. Black participants were more likely than White participants to experience unmet need in delivered meals (aOR 1.29; p<0.01) and caregiver support (aOR 1.26; p<0.05). Significant differences between participants by race and ethnicity were not observed for homemaking or transportation activities. We report adjusted odds ratios and 95% confidence intervals for the full model, including all covariates, in Supplemental Table 4.

Discussion

The older adult population is expected to grow in size and racial and ethnic group diversity in the coming years. Additionally, the proportion of older adults living with disability in the community has increased over the last decade.²⁶ These demographic changes are being met with an increasing demand for publicly-funded HCBS.²⁷ As a result, it is becoming increasingly important to better understand the care experiences of minoritized older adults with disability receiving publicly-funded HCBS. The intersectionality of race and aging plays a critical role in shaping these experiences. Older adults from different racial and ethnic backgrounds may face unique challenges and barriers to accessing quality HCBS, such as cultural differences, language barriers, and historical disparities in healthcare access and outcomes. Addressing these intersectional factors is essential for ensuring equitable and effective HCBS for all older adults, regardless of their racial or ethnic background.

We leveraged the NCI-AD data to examine racial and ethnic differences in unmet need for services among Asian, Black, Hispanic, White, and other racial and ethnic groups receiving HCBS between 2015 and 2019. Our analyses showed that Asian and Black older adults were more likely to experience unmet need across several services, including personal care, adult day, delivered meals, and caregiver support. These findings have significant implications for service access and care quality as states continue to strengthen HCBS targeting older adults living with disabilities.

Both Asian and Black consumers reported higher rates of unmet service needs compared to White consumers. However, due to data limitations, it is difficult to fully describe the HCBS environment, and variability and disparities in HCBS needs may be partially explained by provider characteristics, such as agency size and non-profit versus for-profit status in a particular geographic region or service area. For example, home care agencies providing services like personal care vary substantially in agency structure and capacity, including the number of consumers served, number of staff employed, and years of operation.²⁸ These differences likely impact service accessibility, even among consumers who are already receiving services through publicly funded sources. Unmet need for personal care and adult day services may also be the result of several culminating factors, including cultural competency within HCBS (e.g., lacking staff who speak languages other than English).²⁹ The lack of cultural competency may especially impact older Asian HCBS consumers, of which the majority are foreign-born (more than any other racial and ethnic group in the US).⁹ Additionally, nearly one in four Asian consumers in our sample were living with ADRD, almost three-quarters were living with family, and nearly all Asian consumers were receiving HCBS through Medicaid waivers. Prior work has emphasized that older adults living with ADRD require more intense care (e.g., type of care, more hours of care per week) than those without ADRD.^11,30 As a result, they may be subject to care plan budget restrictions that exclude them from receiving the amount of help they actually need.

For both Asian and Black consumers, the presence of more expansive family caregiving networks^18,31,32 may lead to the assumption that less support is needed from HCBS, resulting in unmet need for personal care. Our finding that Black consumers were more particularly likely to experience unmet need for caregiving support bolsters findings in prior work showing that Black caregivers are often less likely to receive caregiver support services like respite care, especially if they are caring for someone with dementia.³³ Recent national efforts have started prioritizing the needs of family caregivers, and careful attention to diverse populations is necessary for strategies to be successful. One such effort includes OAA funds services via the National Family Caregivers Support Program (NFCSP).^34,35 The NFCSP was established in 2000 and offers information, assistance in finding and accessing services, counseling, respite care, and other supplemental services. While family caregivers may use these services, they are distributed variably across states, which may impact accessibility as well as quality.^34,35 Other strategies, such as the Recognize, Assist, Include, Support, and Engage (RAISE) Act (established in 2018) and recent executive orders from the Biden-Harris Administration target improving support for family caregivers.^36,37 The RAISE Family Caregivers Act specifically calls out diversity, equity, inclusion, and accessibility as essential issues that should be prioritized in the development, delivery, and evaluation of family caregiver supports.³⁶ Moving forward, it is essential to fully examine the scope of caregiver supports, especially as they relate to older adult care experiences and the expansion of policies targeting caregiver well-being.

Our findings have several implications for the equitable distribution, access, and subsequent quality of HCBS. With the recent release of the HCBS Quality Measure Set,² there is greater opportunity to better understand the impact of unmet service needs on relevant outcomes. However, the existent fragmented nature of HCBS and state (vs. federal) oversight create challenges for fully understanding service and provider characteristics that might contribute to unmet need for services and their subsequent consequences. Additionally, more research is needed to understand the role of place, since HCBS availability, use, and experiences may be influenced by factors such as neighborhood characteristics (e.g., social disadvantage), area-level concentration of the HCBS workforce, and state-level characteristics (e.g., state commitment to HCBS).³⁸ Further, future research should evaluate provider attitudes about care delivery in neighborhoods deemed unsafe, which could have implications for older adults’ ability to access services.^39,40

Limitations

We acknowledge several limitations. First, our study is cross-sectional, and we are unable to determine causality. Second, race may function as a proxy for cultural experiences, but we do not have explicit information on language or other cultural needs, which may directly impact unmet need. Third, while we have information about service use, we do not have more specific information relative to the care plan, such as information about hours of care. Similarly, we are also limited in the information we can include about a consumer’s caregiving network, such as the number of available caregivers and the type of assistance they provide. Fourth, we do not have additional state-level information, such as Medicaid generosity, which is linked to the care experiences of older adults.^11,38 Fifth, as a result of the NCI-AD requiring respondent confidentiality (i.e., no individual identifiers collected), we cannot determine whether and which individuals are represented in multiple waves. Despite these limitations, the present study yields important information about racial and ethnic difference in unmet need for HCBS.

Conclusion

We find that Non-Hispanic Black and Asian older adults are especially vulnerable to experiencing unmet need for HCBS. Future research should identify driving forces in disparities in unmet need to develop culturally appropriate solutions. HCBS programs should monitor trends in consumer-reported unmet needs for equitable continuous quality improvement.

Supplementary Material

Supinfo

Supplemental Table 1: Survey questions to determine need for proxy from the National Core Indicators – Aging and Disability Survey

Supplemental Methods: Sampling approach for and administration of the National Core Indicators – Aging and Disability Survey

Supplemental Table 2: Survey questions for service use and unmet need from the National Core Indicators – Aging and Disability Survey

Supplemental Table 3: Proportions of unmet need among all consumers and across HCBS type utilization and racial and ethnic groups (95% confidence intervals included)

Supplemental Table 4: Associations between race and ethnicity, older adult characteristics, and unmet need for HCBS (95% confidence intervals included)

Figure 1.

Figure displays the estimated prevalence of unmet need in each HCBS service by race and ethnicity. Point estimates and 95% confidence intervals are presented.

Key Points.

1. Across nearly all racial and ethnic groups, unmet need was most often experienced for homemaker/chore, personal care, and transportation services, regardless of service use.

2. Older Black and Asian home and community-based service (HCBS) consumers more often experience unmet need for adult day and personal care services than White consumers.

3. Older Black HCBS consumers more often experience unmet need for meal delivery and caregiver support services than their White counterparts.

Why does this matter?

Black and Asian older adults are especially vulnerable to experiencing unmet need for HCBS. These findings indicate a need for future research to identify driving forces in disparities and develop culturally appropriate solutions. HCBS programs should monitor trends in consumer-reported unmet needs for equitable continuous quality improvement.