Low exposure to home- and community-based services among U.S. adults: Cause for concern?

Abstract

Home- and community-based services (HCBS) facilitate community living for older adults and persons with disabilities, but limited awareness of HCBS is a significant barrier to access. Social exposure is one potential conduit for HCBS knowledge. To understand the general population’s social exposure to HCBS — that is, knowing someone who has used HCBS (including one’s self) — we fielded a survey item with a nationally-representative panel of U.S. adults. An estimated 53% of U.S. adults reported not knowing anyone who had used HCBS. Exposure rates were low across specific HCBS types (6% to 28%). Women had greater exposure than men for eight of the eleven HCBS. We also found differences by age, racial/ethnic identity, rurality, education, and income. Increasing the general public’s awareness of HCBS may facilitate access when services are needed, enhance readiness for aging in place, and increase the visibility and inclusion of older adults, persons with disabilities, and caregivers.

Home- and community-based services (HCBS) can facilitate community living for older adults and persons with disabilities. HCBS encompass a range of supports, such as transportation, meal programs, in-home personal care and home health, and adult day services, and include non-Medicaid services (e.g., private pay) and Medicaid-funded services. Despite strong preferences for community living and aging in place, a lack of awareness and knowledge about HCBS is a significant barrier to access for older adults, persons with disabilities, and caregivers (Casado et al., 2011; Denton et al., 2008; Ferris et al., 2016; Greenwood et al., 2015; Khatutsky et al., 2017).

In turn, increasing awareness of HCBS among these focal populations often emerges as a proposed solution to this barrier. However, this is an inherently reactive framing. A more proactive framing – in tandem with continued efforts to reach populations with immediate need – would also target awareness of HCBS among the general population for three key reasons. First, older adults, persons with disabilities, and caregivers all live within broader social networks (Gardner, 2011). The general public’s awareness of HCBS can increase the likelihood that information about the existence of services would be transmitted when need arises (e.g., through informal conversations). Second, a basic awareness of the HCBS ecosystem is instrumental to planning for care (readiness). Given that being a family caregiver or care recipient are virtually universal experiences, all adults should be prepared to experience one or both of these roles (Schulz et al., 2020). Third, bolstering awareness of HCBS may have a longer-range effect of increasing the visibility and social inclusion of older adults, persons with disabilities, and caregivers within their broader communities.

Social exposure is a key channel through which the general public may gain awareness of HCBS (Figure 1). It is also one useful indicator of the general social visibility of services that facilitate community living, and public readiness for aging in place. To our knowledge, there are no contemporary estimates of HCBS exposure among the general population in the United States. To address this gap, we fielded an initial item assessing social exposure to HCBS (personal use, or use by a personal contact) in a nationally representative panel of U.S. adults.

Figure 1.

Conceptual model for drivers of HCBS awareness among the general public.

Methods

Study design.

Data were collected from the RAND American Life Panel (ALP) July 2021 Omnibus survey. Briefly, the ALP is a nationally representative, probability-based panel of U.S. adults ages 18 and older. Methods are detailed elsewhere (Pollard & Baird, 2017). Panelists self-administer internet-based surveys. Between 2007 and 2019, an average of 88% of panelists were active in a given year. Informed consent is obtained annually, and human subjects procedures are reviewed by RAND’s Human Subjects Protection Committee (#2016-0845).

ALP Omnibus surveys are fielded three times each year, open for two weeks, and capped at approximately 2,000 responses (two-thirds of the probability sample). The July 2021 Omnibus had 2,137 complete responses (57% response rate). Weights matched the 2020 Current Population Survey on marginal proportions within cells defined by race and gender, education and gender, age and gender, and household income and number of household members (Pollard & Baird, 2017).

Measures.

HCBS social exposure.

A single item assessed personal use and/or awareness of a personal contact who had used HCBS. Respondents were asked, “Have you or anyone in your personal network (e.g., family, friends, etc.) ever used paid services for older adults or persons with disabilities? Check all that apply.” HCBS types included: Transportation services (e.g., Access-A-Ride, medical transportation services); Home-delivered meals (e.g., Meals on Wheels); Group meals (in a senior center or similar setting); Adult day programs that provide supervision, personal care, and activities (also known as ‘adult day care’); Home health care (e.g., professionals monitoring health, providing medications, or other treatments at home); Paid personal care assistance (e.g., meal preparation, help with bathing, dressing, shopping, housekeeping); Home accessibility modifications (e.g., adding ramps or stair lifts, walk-in tubs or showers, shower grab bars); Personal emergency response system/PERS (e.g., a wearable button to call for help in an emergency, such as a fall); Case management (e.g., a social worker who helps plan services like home care, meal delivery, etc.); Caregiver training; Overnight respite (e.g., a short-term stay in a nursing home so that caregivers of an older adult or person with a disability can take a short break from caregiving); None of these. Ordering of HCBS types was randomized for each participant. The survey question was developed by the lead author with input from co-authors, and focused on the most commonly-discussed HCBS in our previous stakeholder research and in the literature (Musumeci et al., 2020; Siconolfi et al., 2019; Waymouth et al., 2022).

Sociodemographic variables.

We examined differences in exposure by sex, age, race and ethnicity, sexual and gender minority identity (SGM; e.g., gay, lesbian, bisexual, transgender, etc.), college degree attainment, marital status (married/living with a partner versus never married/separated/divorced/widowed), rural residence (derived from zip codes), and annual household income. Response category groupings for analysis are shown in Table 1.

Table 1.

Prevalence of HCBS service exposure among U.S. adults, by demographic characteristics.

	Transport. services	Home meals	Cong. meals	Adult day services	Home health	Personal care	Home mods.	PERS	Case mgmt.	Caregiver training	Overnight respite	None of these
Overall	18.6%	11.8%	7.3%	7.7%	27.5%	20.4%	21.1%	13.4%	11.3%	5.7%	5.8%	52.9%
Sex	p = .914	p = .112	p = .006	p = .031	p = .013	p = .100	p = .014	p = .003	p = .023	p = .022	p = .023	p = .025
Male	18.8%	9.6%	4.5%	5.1%	22.5%	17.2%	16.3%	8.4%	8.4%	3.7%	3.5%	58.4%
Female	18.4%	13.8%	9.9%	10.1%	32.2%	23.4%	25.5%	18.1%	14.1%	7.7%	7.9%	47.9%
Age	p = .934	p = .124	p = .754	p = .942	p = .264	p = .729	p = .034	p = .502	p = .311	p = .113	p = .353	p = .229
< 65 years old	18.7%	10.9%	7.2%	7.7%	26.7%	20.7%	19.6%	13.0%	10.8%	6.2%	6.1%	54.0%
≥ 65 years old	18.4%	14.8%	7.8%	7.6%	30.4%	19.7%	26.4%	14.8%	13.2%	3.9%	4.7%	49.3%
Race/Ethnicity	p = .004	p = .157	p = .346	p = .024	p = .181	p = .092	p = .051	p = .015	p = .032	p = .006	p = .573	p = .392
NH White	15.8%	11.4%	8.1%	6.5%	30.3%	23.5%	24.9%	13.8%	10.5%	3.9%	6.0%	52.0%
NH Black	33.8%	20.0%	10.2%	18.3%	25.8%	22.6%	18.6%	18.2%	22.5%	16.1%	10.1%	51.7%
NH AI/AN	13.1%	11.5%	1.6%	2.3%	1.6%	3.3%	10.0%	56.3%	2.6%	3.3%	0.0%	28.0%
NH API	5.3%	6.3%	0.8%	5.0%	23.9%	15.6%	2.2%	13.3%	5.4%	6.8%	7.7%	70.9%
NH Other	43.7%	24.2%	1.9%	2.8%	37.4%	8.9%	3.6%	4.8%	5.2%	1.5%	2.2%	44.6%
Hispanic	17.8%	6.9%	5.0%	6.6%	20.4%	12.3%	16.6%	6.5%	9.7%	5.8%	2.7%	57.0%
SGM	p = .437	p = .621	p = .594	p = .284	p = .449	p = .898	p = .971	p = .405	p = .633	p = .310	p = .382	p = .442
Hetero-Cisgender	18.1%	11.5%	6.9%	7.0%	28.5%	20.6%	21.0%	12.8%	11.0%	5.2%	5.2%	52.0%
SGM	25.0%	15.4%	10.8%	14.1%	20.9%	19.5%	21.4%	19.3%	14.8%	11.5%	10.8%	60.0%
College degree	p = .395	p = .806	p = .143	p = .216	p = .013	p = .009	p = .014	p = .010	p = .908	p = .848	p = .748	p = .004
< College	17.2%	12.1%	5.6%	6.2%	22.9%	15.7%	16.8%	9.2%	11.4%	5.5%	5.3%	58.8%
≥ College	20.5%	11.5%	9.4%	9.4%	32.8%	25.9%	26.1%	18.4%	11.1%	5.9%	6.0%	45.9%
Marital status	p = .320	p = .693	p = .484	p = .479	p = .135	p = .039	p = .042	p = .420	p = .446	p = .321	p = .942	p = .116
Not married	21.3%	11.0%	5.9%	9.0%	23.7%	15.2%	16.0%	11.6%	12.8%	7.3%	5.7%	57.7%
Married/partner	17.2%	12.3%	8.1%	7.0%	29.8%	23.5%	24.1%	14.5%	10.5%	4.9%	5.9%	50.0%
Rurality	p = .049	p = .890	p = .644	p = .007	p = .732	p = .652	p = .388	p = .872	p = .666	p = .013	p = .399	p = .509
Non-rural	20.4%	11.8%	7.1%	8.8%	27.2%	20.9%	20.3%	13.6%	11.0%	6.6%	5.3%	52.0%
Rural	12.4%	11.5%	8.2%	3.8%	28.8%	18.9%	24.0%	13.0%	12.4%	2.9%	7.4%	56.1%
Income	p = .329	p = .713	p = .433	p = .634	p = .103	p = .032	p = .259	p = .186	p = .874	p = .678	p = .979	p = .116
< $35k	23.5%	13.2%	7.4%	9.1%	24.0%	13.4%	16.7%	12.3%	11.6%	6.9%	5.6%	58.6%
$35k–$74,999	18.2%	12.5%	5.1%	6.1%	23.3%	18.0%	19.9%	9.8%	11.9%	6.0%	5.5%	56.0%
≥ $75k	16.3%	10.6%	8.9%	7.8%	32.2%	26.0%	24.3%	16.6%	10.5%	4.8%	5.8%	47.5%

95% confidence intervals available in Supplementary Table 1.

Analysis.

Analyses used ALP survey weights. We calculated the proportion of each demographic group reporting exposure to a given HCBS. We then used Pearson χ² tests with correction for survey weights to test whether exposure differences were statistically significant at p<.05.

Results

Results are weighted to be nationally representative. Table 1 shows overall social exposure to HCBS types among the overall sample of U.S. adults, and differences across sociodemographic groups. Detailed estimates including 95% confidence intervals are shown in Supplementary Table S1. More than half of adults (52.9%; 95% CI: 48.2% to 57.6%) did not report social exposure to any of the HCBS. Men (58.4%; 95% CI: 50.6% to 65.8%) were more likely than women (47.9%; 95% CI: 42.5% to 53.3%) to report no social exposure. Those without a college degree (58.8%; 95% CI 51.4% to 65.9%) were also more likely than college graduates (45.9%; 95% CI 40.6% to 51.3%) to have no social exposure to any HCBS.

We found evidence that women had greater exposure than men, often one-and-a-half to twofold greater, for congregate meals, adult day services, home health, home modifications, PERS, case management, caregiver training, and overnight respite. We found evidence of only one difference by age group; older adults had greater exposure to home modifications (26.4%; 95% CI 22.2% to 30.9%) than younger adults (19.6%, 95% CI 15.4% to 24.5%). Married/partnered persons reported greater exposure to personal care (23.5%; 95% CI 19.0% to 28.5%) than unmarried/unpartnered persons (15.2%; 95% CI 9.9% to 22.0%) and also greater exposure to home modifications (24.1%; 95% CI 19.6% to 29.0%) than unmarried/unpartnered persons (16.0%; 95% CI 10.6% to 22.7%). Estimates showed evidence that non-rural residents had greater exposure to transportation services (20.4%; 95% CI 16.0% to 25.4%) than rural residents (12.4%; 95% CI 7.2% to 19.4%), greater exposure to adult day services (8.8%; 95% CI 6.0% to 12.4%) than rural residents (3.8%; 95% CI 2.1% to 6.4%), and greater exposure to caregiver training (6.6%; 95% CI 4.1% to 9.9%) than rural residents (2.9%; 95% CI 1.6% to 4.8%).

We found evidence of differences by race/ethnicity for five of the eleven services. Non-Hispanic adults of multiracial or other racial/ethnic identity had the highest exposure to transportation. Non-Hispanic Black adults had the highest exposure to adult day services, case management, and caregiver training. Finally, non-Hispanic AI/AN adults had the highest exposure to PERS.

Higher income groups had greater exposure to personal care. Additionally, those with a college education were more likely to report exposure to personal care, home health, home modifications, and PERS, compared to peers without a college degree.

Discussion

To our knowledge, this is the only contemporary study to measure social exposure to a range of HCBS in the general population. Overall, U.S. adults reported low levels of exposure to specific service types, and more than half of adults reported no exposure to any of these HCBS. Fewer than 1 in 10 U.S. adults had social exposure to congregate meals, adult day services, caregiver training, and overnight respite. Home health care, personal care, and home modifications had the most exposure, and the home-based nature of these services stands out and may reflect an overall climate of HCBS in the U.S. as more home- than community-based.

Lower rates of exposure for some service types (e.g., overnight respite, adult day services) aligns with the more limited availability of these services, relative to predominant HCBS (e.g., home health). For example, states are required to offer home health in their state plan, but can choose which other services (e.g., adult day services, transportation) to offer via state plans or Medicaid waiver programs (Musumeci et al., 2020). Nevertheless, rates for home health and personal care also seem low given the relatively common use of these services and low bar that defined social exposure. This may reflect structural aspects of individuals’ social networks (e.g., social isolation) or normative aspects (e.g., consumers and caregivers may not widely disclose to others their use of HCBS if it is considered a sensitive topic).

We found evidence for only one difference by age group, and these generally null results are surprising given that older adults are a primary population for HCBS. The disparity between women’s and men’s exposure across the majority of HCBS types was notable. On one hand, this may not be surprising, given the greater share of caregiving undertaken by women (AARP & National Alliance for Caregiving, 2020). On the other hand, we defined exposure with a relatively low bar: personal use or awareness of a personal contact who had ever used these services. This gender difference has implications for men’s likelihood of benefitting from these services, whether as a caregiver or consumer.

Differences in HCBS exposure by educational attainment and income likely reflect socioeconomic resources. For example, this could include the ability to afford private-pay services, the ability to relocate away from families of origin, or having the economic means to “outsource” the more intimate and demanding aspects of caregiving.

Our finding that rural adults had lower exposure to transportation, adult day programs, and caregiver training aligns with well-documented rural disparities in HCBS access (Coburn et al., 2019; Siconolfi et al., 2019; Weaver & Roberto, 2021). Limited rural transportation options may also be a significant barrier to adult day programs, which are reliant on attendees’ ability to travel to the program.

There were no clear patterns for the differences in exposure across racial/ethnic groups, and potential mechanisms underlying these differences are unclear. For three of the five services with different exposure rates, non-Hispanic Black adults had the highest exposure. Potential explanations include socioeconomic disparities and therefore more exposure to economic safety net programs (Kaiser Family Foundation, 2013) and extended social networks that transmit informational support (Taylor et al., 2016). At the same time, racial and ethnic minority groups may have poorer outcomes (e.g., preventable hospitalizations) that likely reflect limited access to and inadequacy of services (Gorges et al., 2019).

Several limitations apply. First, the survey was fielded only in English. Second, survey wording may have resulted in underreporting. For example, some participants may have been conservative in interpreting the definition of a personal network (“e.g., family, friends, etc.”) and could have excluded other contacts (e.g., coworkers). Additionally, the survey question specified “paid services,” to help differentiate between unpaid informal supports versus formal services. However, this may contribute to underreporting if respondents interpreted “paid” to exclude subsidized (e.g., Medicaid-funded) HCBS. For transportation, the example did not differentiate social versus medical transportation, and the caregiver training option did not specify specific services (e.g., support programs, education, etc.).

Conclusion.

This survey represented a pilot study, and we recognize that HCBS access is contingent upon much more than knowledge (e.g., affordability). However, a lack of HCBS knowledge is a significant initial barrier. Future research should assess the general public’s HCBS exposure, knowledge, attitudes, and personal utilization in greater detail. A more in-depth study could develop and administer a range of questions to measure these constructs, along with an expanded list of services.

The need for HCBS will continue to grow in an era of increasing emphasis on community-based long-term care and as the baby boomer cohort ages. Yet, our findings indicate that relatively few Americans report personal exposure to these services, a key conduit for knowledge (Figure 1). Increasing the general public’s awareness of HCBS may facilitate access to these services when they are needed, enhance readiness for aging in place, and increase the visibility and inclusion of older adults, persons with disabilities, and caregivers in their broader communities.

What this paper adds:

• A lack of consumer knowledge about HCBS is a significant barrier to access, and social exposure to HCBS users is one source of knowledge. Yet, there are no contemporary estimates of HCBS exposure in the general population of U.S. adults.

• About half of U.S. adults reported no personal exposure to HCBS in their social networks.

• Overall, service exposure was more home- than community-based. Rates were highest for home health care, personal care, and home modifications, and lowest for congregate meals, adult day services, caregiver training, and overnight respite.

Applications of study findings:

• Need for these services will grow as the baby boomer cohort ages and as long-term care shifts toward HCBS. Low rates of HCBS exposure (and in turn, knowledge) have implications for access.

• Greater awareness of HCBS in the general population may increase the likelihood that information about HCBS is transmitted within social networks, may help persons plan for care, and may increase the visibility and social inclusion of older adults, persons with disabilities, and caregivers in their broader communities.