**Abstract**

Disparities in older adults' care and experiences in long-term care facilities (LTCFs) such as nursing homes and assisted living/residential care communities reflect disparities in the broader society. Various policies and institutional practices related to economic opportunity, education, housing, health care, and retirement financing have created and maintain inequitable social structures in the United States. This chapter describes racial and ethnic disparities among older adults in LTCFs in the United States and the systemic factors associated with those disparities. It presents a conceptual framework for understanding the role of structural racism in the racial and ethnic inequities experienced by LTCF residents. In the framework, structural racism directly contributes to racial and ethnic inequities among LTCF residents through LTCF-related policies and practices. Structural racism also indirectly causes disparities among LTCF residents through health and economic disparities. The chapter describes current efforts that address the effects of structural racism within LTCFs and concludes with practice and policy recommendations to redress racial and ethnic disparities among LTCF residents.

**Keywords:** long-term care facilities, nursing homes, assisted living communities, health disparities, racial and ethnic inequities, Medicaid policy, Long-Term Care Ombudsman Program

## **1. Introduction**

Structural racism affects individuals and communities across the life course. For older Americans, inequities in health access, quality, and outcomes caused by racism and systemic barriers in the United States can be exacerbated in later life in a variety of domains including physical and cognitive health, mortality rates, and quality of care. Systems for care in later life include long-term care facilities (LTCFs) such as nursing homes and assisted living/residential care communities. Paired with the demographic trend of increasing proportions of older adults from historically minority racial and ethnic groups [1] is a growing utilization of LTCFs by people of color [2]. Unfortunately, older adults of color in the United States experience disparities in access to quality nursing homes; access to care in assisted living communities; quality of care and quality of life in LTCFs; health outcomes as LTCF residents; and social engagement within LTCFs. These disparities are associated with a variety of structural factors (e.g., federal and state policy related to LTCF funding and oversight, housing policies that have created racially segregated communities, and workforce practices that lead to income and wealth disparities). The growing number of people of color in LTCFs and persistent disparities within them creates an urgency to address racial and ethnic inequities in quality of care and quality of life for older adults of color living in LTCFs.

#### **1.1 Long-term care facilities (LTCFs)**

Older adults who experience chronic limitations in physical and cognitive functioning may need long-term services and supports. Long-term care encompasses a range of services and supports that assists individuals in completing activities such as dressing, preparing meals, medication management, and housework [3]. Most long-term care is provided at home by family caregivers [4]; however, long-term care is also available in long-term care facilities (LTCFs). The need for long-term services and supports increases as individuals age, as does the likelihood of not having the assistance of a spouse who can provide informal care. For this reason, and due to the aging of the population in the United States, a growing number of older adults are utilizing LTCFs [3, 5].

In the United States, the majority of the funding for long-term services and supports comes from public sources, but many people privately pay or use private long-term care insurance [6, 7]. Medicaid, a means-tested program, is the primary funder of care in LTCFs. The federal and state governments jointly fund Medicaid, but it is administered by the states. Each state sets its own eligibility requirements for Medicaid, which include income and resource limits. In contrast, Medicare is administered at the federal level, and eligibility requirements are tied to eligibility for Social Security or Railroad Retirement benefits [8].

#### *1.1.1 Nursing homes*

Nursing homes are residential communities that provide a higher level of care than can often be provided at home or through other community-based services. Nursing homes may also provide health care services such as physical or occupational therapy to help patients recover from illnesses or injuries. The median monthly U.S. nursing home cost in 2020 was \$8,821 for a private room and \$7,756 for a semi-private room [9]. Most nursing home residents pay for long-term nursing home care with Medicaid, with Medicare paying for more short-term post-acute nursing care in skilled nursing facilities [10].

Private nursing homes became common in the United States beginning in the late 1930s, after the Social Security Act of 1935 prohibited older adults who lived in public alms houses from receiving Old Age Assistance [11]. Wealthier White older adults were able to afford private nursing home care; however, this option was financially inaccessible for poorer White people and poorer people of color [12]. Public funding for nursing home care was not available until the 1950s [13]. These policy decisions created financial barriers for people of color, particularly African Americans, to access nursing home care.

In contrast to the past, today older adults of color are overrepresented in the nursing home population, representing approximately 25% of nursing home residents [2, 10]. The trend for increasing portions of residents of color in nursing homes seems to be driven in part by White older adults disproportionately accessing more appealing alternatives to nursing homes that are funded by Medicaid waivers for Home and

#### *Addressing Systemic Factors Related to Racial and Ethnic Disparities among Older Adults… DOI: http://dx.doi.org/10.5772/intechopen.99926*

Community-Based Services [2] and privately paying for care in assisted living communities [14]. At the same time that an increasing percentage of people of color are using nursing homes, there have been increased closures of nursing homes across the country, with closures concentrated in disadvantaged communities of color [2].

Nursing homes tend to be quite segregated by race and ethnicity [15], a phenomenon related to past structural racism. Policies such as the 1946 Hill-Burton Act (which funded construction of "separate but equal" nursing homes) and southern Jim Crow laws combined with discriminatory practices in hospital discharge planning and nursing home admissions to create and maintain segregated nursing home systems [12, 16, 17]. In the 1960s, the Johnson administration failed to use provisions of the Civil Rights Act to desegregate nursing homes and prohibit discrimination in nursing home practices [12, 17, 18]. Housing policies such as redlining created and perpetuated racial segregation of neighborhoods which in turn supported racial segregation of nursing homes, as nursing home residents tend to come from their surrounding communities [15].

#### *1.1.2 Assisted living/residential care communities*

Assisted living or similar residential care communities are another type of LTCF. They serve older adults who cannot live alone safely, but do not need the level of care provided at nursing homes. They offer personal care and household assistance to residents in a homelike environment. Assisted living and residential care communities can range from small homes with a few residents to large communities of private apartments in large residential settings, which tend to be chain-affiliated and owned by for-profit companies. These communities generally provide communal meals and opportunities for socialization and physical activities in addition to personal care services. Assisted living communities tend to be in urban/suburban areas and communities characterized by high levels of education, income, and financial resources [2]. Licensing of assisted living/residential care communities is at the state level, with variations across the states.

Many Americans have a more favorable impression of assisted living than of nursing homes, and it the fastest growing model of residential long-term care [19]. The 2020 median monthly cost of assisted living care was \$4,300 – substantially less than care in a nursing home [9] – but prohibitive for many to pay out of pocket. Medicaid only covers assisted living in states that have Medicaid waivers for Home and Community-Based Services that fund assisted living [20]. Although most states have these waivers, the coverage is low, and smaller and poorer states are less likely to adopt Medicaid waivers [21]. Furthermore, Medicaid eligibility, benefits, cost sharing requirements, and reimbursement rates vary by state [22], and evidence suggests that racial bias within a state is related to lower levels of Medicaid spending [23]. A few states do not provide any Medicaid funding for assisted living/residential care and in others, Medicaid covers personal care, but not room and board. In states that do fund assisted living with Medicaid, low reimbursement rates and the costs of administering Medicaid deter many assisted living providers from becoming Medicaid certified [24]. Indeed, less than half of the assisted living/residential care communities in the United States accept Medicaid [10]. As might be suggested by these systemic barriers, older adults of color are underrepresented in assisted living communities [10, 25].

### **2. Racial and ethnic disparities in U.S. long-term care facilities**

The almost half-million older adults of color who currently live in U.S. LTCFs [3] face disparities along a variety of dimensions including health outcomes, quality

of care, quality of life, and social integration compared to non-Hispanic White residents. Much of the evidence of racial and ethnic disparities in long-term care comes from nursing homes, which are federally mandated to provide detailed health outcome and demographic data for their residents. This evidence points to racial and ethnic disparities in health and quality of life outcomes, engagement with health services, and access to quality care.

In nursing homes, health outcome disparities are evidenced by findings that Black residents have a higher risk for developing pressure ulcers [26, 27] which can lead to serious medical complications, and are less likely to recover from pressure ulcers present when they are admitted [28]. There are ample examples of racial and ethnic disparities in engagement with health services and health care quality within LTCFs. Black residents have received less pain management [29], have been subject to more use of physical restraints [30], and are less likely to receive a flu vaccine [31] compared to White residents. Black residents and those categorized on medical records as coming from "other" racial groups (e.g., American Indian/Alaska Native; Native Hawaiian/Pacific Islander) were found to be less likely to have toileting plans for incontinence than White residents [29]. Depressive symptoms – which can have severe mental health consequences if depression is left untreated – seem to be underreported for Black, Latinx, and Asian nursing home residents [32].

Racial and ethnic disparities in quality of life outcomes such as cultural fit and social engagement have also been reported. For example, higher proportions of minority residents in nursing homes are associated with more quality of life deficiencies reported in the facility [33]. Chinese residents have reported a lack of culturally appropriate food, which related not only to their feelings of belonging and being valued, but also to receiving enough nutrition [34]. Compared to White residents, Black, Latinx, and other nursing home residents of color have scored lower on social engagement measures that include interacting with others, accepting invitations to group activities, being at ease in group/structured activities, and establishing their own social goals [35]. Indeed, nursing home residents of color have reported lower quality of life indicators than White residents across multiple domains, including personal attention, food, engagement within the facility and with staff, and mood [36].

Data regarding complaints received by the U.S. Long-Term Care Ombudsman Program extends our understanding of racial and ethnic disparities in LTCFs to include assisted living communities. The Long-Term Care Ombudsman Program is a federally mandated program administered at the state level that advocates for LTCF residents in both nursing homes and assisted living communities. Local ombudsmen conduct site visits, make referrals as needed, provide resident and public education, engage in policy advocacy, and receive and resolve complaints on behalf of residents. In their role as resident advocate, state Ombudsman Programs are well positioned to enhance our understanding of racial and ethnic disparities among LTCF residents. However, State Ombudsman Programs are not required to collect and report data about the race and ethnicity of the residents for whom they receive complaints; they are only required to report aggregate-level race and ethnicity data for the facilities under their purview.

A recent study of ombudsman complaints in the Dallas, TX, area collected race/ ethnicity data associated with resident complaints in an examination of racial and ethnic differences in complaint types and resolution rates [37]. Residents of color were more likely than White residents to file complaints related to residents' rights (i.e., abuse, access to information, autonomy, financial rights). Interestingly, complaints more likely to be resolved in nursing homes and assisted living communities with higher percentages of minority residents; however, this finding was related to the resolution of complaints from or on behalf of White residents living

*Addressing Systemic Factors Related to Racial and Ethnic Disparities among Older Adults… DOI: http://dx.doi.org/10.5772/intechopen.99926*

in those communities [37]. In focus groups, ombudsmen noted they had witnessed residents of color who refrained from making complaints about care compared to complaints about rights for fears of retaliation or being branded as a problem in the community. The ombudsmen also described ways in which LTCFs did not provide culturally appropriate environments for all residents (e.g., staff who could not communicate with residents in their language). Finally, the ombudsmen provided additional information about staffing ratios at Medicaid-certified facilities noting at times that only one aid would be available to care for a dozen residents needing aid.

### **2.1 Between- and within-facility sources of racial and ethnic disparities in LTCFs**

As described earlier in this chapter, LTCFs tended to be racially segregated which relates to disparities in access to quality LTCF care. Many of the racial and ethnic disparities LTCF residents experience arise from differences between LTCFs that serve higher percentages of residents of color, particularly Black residents, and those that serve lower percentages [27, 33, 36]. LTCFs that serve higher percentages of residents of color tend to have fewer financial and community resources and insufficient staffing, with a correspondingly high number of care deficiencies, inadequate direct care, and low quality of care ratings [33, 38–40]. Economic factors play a major role in these differences. In general, LTCFs with higher concentrations of residents of color rely more on Medicaid funding than LTCFs serving predominantly White residents and are therefore more constrained by Medicaid's lower reimbursement rates [33, 38, 39]. Indeed, the more Medicaid-reliant a nursing home is, the fewer resources it has to devote to resident-directed care and activities, improving the home environment, and other quality of life and quality of care related pursuits [41].

Although facility-level differences account for many of the racial and ethnic disparities among nursing home residents, disparities still exist within individual facilities such as in vaccination rates and quality of care [31, 42]. This can be attributed in part to an unconscious provider bias, which can lead to health care providers limiting the amount of information they share with residents of color and result in less patient-centered communication [43]. It can also be related to the fact that people of color tend to be admitted to nursing homes with worse health and greater care needs [44].

#### **2.2 COVID-19 and racial and ethnic disparities in long-term care facilities**

The COVID-19 pandemic ushered in a heightened awareness of structural racism and discrimination related to the provision of health care to older adults. Communities of color were disproportionately affected by COVID-19 infections, severe illness, and deaths [45]. The Centers for Disease Control and Prevention [46] reported that approximately 22% of the COVID-19 deaths in the United States in 2020 occurred in LTCFs. Prior to the pandemic about 63 percent of nursing homes had infection-control deficiencies [47]. Because older people of color were overrepresented in nursing home populations in general – and specifically more likely to reside in lower-quality nursing homes – this put them at an increased risk for contracting infectious diseases like COVID-19. Indeed, facility-level disparities quickly became apparent. In the early months of the pandemic in the United States, *The New York Times* [48] reported that nursing homes with higher percentages of Black or Latinx residents were twice as likely to report COVID-19 infections than those with predominantly White residents. A subsequent analysis of Centers for Medicare & Medicaid Services data through May 2020 had similar findings [49].

Nursing homes with higher portions of residents of color tended to be in areas with higher levels of COVID-19 cases and deaths. It also found that LTCFs with higher proportions of residents of color were more likely than those with low proportions of residents of color to experience COVID-19 infections and deaths and report a shortage of aids during the pandemic [49].
