Our findings support our hypotheses that there are disparities in HCBS utilization as well as Medicaid expenditures among MS patients who receive HCBS. Specifically, we found that among HCBS users, for the five services with the most utilization, after controlling for demographic characteristics, chronic conditions, state, and months of eligibility, Whites were more likely to use case management, equipment, technology, and modifications, and nursing services. We also found significant differences in the association between race and Medicaid HCBS expenditures when we stratified our analyses by sex. White men had the highest HCBS expenditures, followed by White women and African-American women. Black men had the lowest Medicaid HCBS expenditures.
Case management services are a method of matching clients to appropriate services through assessment, care plan development, coordination, and arrangement of HCBS [25]. Our results align with prior findings on racial differences in case management preference. In a study examining how preferences for consumer direction vary by race and ethnicity, Black who desired more control over home care workers were also less likely to prefer a traditional model of case management, in which an agency takes responsibility to develop an individual’s service plan and choosing and arranging home care services. Rather, they were more likely to prefer either a cash and counseling or negotiated care management model. Both of these models of care give HCBS recipients more freedom to choose services by providing a monthly budget and some assistance to arrange home care services [26]. While this may be the case, most states do not allow users the option of refusing case management services because they are an integral part of the HCBS waiver [27]. Further research should be done to understand the disparity in utilization.
The equipment, technology, and modification taxonomy category covers a range of services, such as home and vehicle modifications, as well as personal products (e.g. incontinence products). However, for those in our sample who used services in this category, about 90% of procedure codes categorized as equipment, technology, or modification services were for home modifications. It isn’t entirely clear why Blacks are less likely to receive home modifications, but we hypothesize two scenarios that may offer explanations. First, Blacks may already be living in apartments, which are more likely to already have ramps and wheelchair access available and may not need additional HCBS resources to modify their homes [28]. Conversely, Blacks are less likely to be homeowners [29], so they may be unable to modify homes due to restrictions enforced by landlords. While provisions such as the Fair Housing Act protect against discrimination based on race and disability for housing-related transactions, it is likely difficult to modify an apartment after someone is already living there [30]. For people with a condition with a worsening disability trajectory, landlords have to consider that individuals requiring additional home modifications may eventually leave their independent living arrangement to live with family or be admitted to a nursing home.
Blacks were also less likely to use nursing services, even after adjusting for demographic characteristics, comorbidities, state, and length of eligibility. This finding appears to follow a pattern – one study showed that among older adults with diabetes received home health services, Blacks received fewer skilled nursing visits compared to White [31]. This might be due to a few different reasons that are explained by challenges in the provider-patient relationship, such as provider bias or recipient distrust. Doctors and nurses have acknowledged that provider bias contributes to disparities in care [32]. However, bias is also influenced by challenges with patients – Blacks are more likely to not adhere to medical instructions [33]. The combination of these factors likely contributes to the lower likelihood of Blacks receiving nursing services.
While we find that several factors contribute to Medicaid HCBS expenditures, our findings indicate racial and gender disparities. Black men had the lowest Medicaid HCBS expenditures. While Black men made up only 6% of our sample, were younger, and had fewer comorbidities compared to White men and women, and Black women, they had the highest rates of mobility impairment, which is typically attributed to a greater need for HCBS. This finding is important, as Black men incur greater healthcare utilization costs (e.g. inpatient, emergency room, outpatient, prescription drugs) than any other racial/ethnic group. [34]. These costs might be reduced if HCBS utilization increased for Black men.
Limitations
While our findings provide evidence for racial differences in HCBS utilization and Medicaid HCBS expenditures among dually-eligible persons with MS, we acknowledge several limitations. First, our findings reflect utilization and expenditures for a small sample of dual-eligible adults in the MS population, which could present challenges with generalizability. However, our sample resides in 48 states and Washington DC, therefore having implications for national Medicaid policy implementation. Second, this study presents findings from the MS population; results might be different for other chronic conditions. Still, the needs of the MS population may reflect that of aging adults in need of HCBS, although our sample members were younger than typical HCBS recipients. Third, as our data come from Medicare and Medicaid claims, we could not include variables, such as socioeconomic status or other social-environmental factors that might better explain some of our findings. For example, HCBS utilization is heavily influenced by the presence (or lack thereof) of an informal care network. Future studies should include characteristics that reflect systems of social support as well as the social environmental context in which people are living. Fourth, for our multivariate analyses, we assumed that the likelihood of service utilization would not change over time. We are unable to determine whether this is true in all cases, and HCBS utilization may be impacted by a number of unobserved variables (e.g. availability of informal care, MS disease course and disability progression). Last, we limited our study to White and Black individuals with MS – Hispanics represented roughly 5 % of our sample, as well as individuals identifying as other races/ethnicities, including American Indian, Asian-American and Pacific Islander. While incidence of MS is lower in other racial/ethnic groups compared to Whites and Blacks, differences may exist in HCBS utilization, as some research has shown that MS treatment choices vary across racial and ethnic groups [6].