Long-term services and supports (LTSS) for older adults and persons with disabilities have become a policy priority. The American Rescue Plan and the proposed American Jobs Act aim to increase LTSS spending through the Medicaid program, particularly for Home- and Community-Based Services (HCBS). These measures would address the need for wider service availability, while presenting an opportunity to reduce disparities in access to and receipt of Medicaid HCBS.
Medicaid HCBS 101
Medicaid HCBS are a type of LTSS that provide in-home care to low-income older adults, children and adults with disabilities, and others with complex health needs. Historically these populations received support in institutional settings, such as nursing homes. In contrast, HCBS programs offer care to beneficiaries who continue residing in their own homes and communities. Because most HCBS are funded through both federal and state tax dollars, states have discretion in their Medicaid HCBS. Consequently, services vary substantially by location. Some HCBS programs target specific age groups or people with specific conditions. To qualify for any Medicaid HCBS, beneficiaries must meet both state Medicaid program requirements and any criteria specific to the type of HCBS program they seek.
Disparities in Medicaid HCBS
This service variation by location can create disparities in HCBS delivery. States with bigger Medicaid program investments typically offer more HCBS services. These states may also extend services to more prospective beneficiaries. Many researchers have estimated existing HCBS program disparities by reviewing the number of unserved HCBS applicants on state waiting lists. Over 700,000 prospective HCBS beneficiaries are awaiting services nationwide. This total has increased steadily since the early 2000s. The average time spent on HCBS waiting lists is 2.5 years. Waiting lists tend to be longer in states that have lower HCBS expenditures. Currently Texas, Louisiana, and Florida have the longest HCBS waiting lists. However, each state has its own process for maintaining waiting lists. Thus, the needs of prospective beneficiaries included on waitlists also vary from state to state.
Noting state variation, policymakers, researchers, and advocates have recommended Medicaid HCBS expansion. Increasing Medicaid HCBS funding could mean reaching more beneficiaries and reducing disparities. The Biden administration announced plans to establish Medicaid HCBS nationwide using federal funding. This national effort could deliver more needed services to more eligible beneficiaries. In March 2021, U.S. Congresswoman Debbie Dingell (D-MI) released a discussion draft of the Home and Community Based Services Access Act. This measure would “eliminate waiting lists for HCBS,” “increase capacity of community services,” and “eliminate the race and gender disparities that exist in accessing information and HCBS.” As this bill is only in draft form, its future is uncertain. Yet, even the discussion draft signals interest in expanding Medicaid HCBS access nationwide.
Considering HCBS with an Assets Framework
In proposing Medicaid HCBS expansion, policymakers must be thoughtful about meeting the needs of diverse communities, without deepening existing inequities. Applying an assets-based approach may help to expand Medicaid services and reduce HCBS disparities. This expansion could reach both waitlisted beneficiaries and individuals who are currently unaware of their HCBS eligibility. An assets framework, first proposed by Michael Sherraden, acknowledges an individual’s “tangible” and “intangible” resources. Tangible assets include sources of financial wealth. Intangible assets include personal traits (e.g., race, religion, sex, gender identity), human capital (i.e., skills and education), and social capital (e.g., friends and family).
Leveraging intangible assets may be key to reducing Medicaid HCBS inequities. Accordingly, proposed HCBS expansion efforts should consider the following intangible assets to reduce disparities:
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Personal traits
Who have existing state Medicaid HCBS programs missed historically? Considering both unmet needs and existing service barriers will reduce disparities in Medicaid HCBS access. For instance, lawmakers might review how individuals residing in historically redlined neighborhoods, rural communities, or other geographically disadvantaged areas access HCBS. Likewise, policymakers will want to highlight the need to ensure inclusion of racial, ethnic, religious, sex, gender identity, and other marginalized populations to facilitate both access to and appropriateness of HCBS (e.g., having HCBS-funded caregivers who understand cultural needs and are sensitive to personal characteristics).
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Human capital
What skills and education are required to obtain Medicaid HCBS? Ensuring that all potentially eligible individuals have needed information about HCBS, including eligibility requirements, is critical to removing barriers and ensuring more equitable service delivery. For example, HCBS application content should be made available in plain language to be inclusive of literacy level, as well as in multiple languages or with interpreters available. HCBS providers also might market the availability of services to communities where prospective beneficiaries reside.
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Social capital
How might Medicaid HCBS include roles for families and significant others? Personal networks can support a more person-centered approach to care. Thinking about the myriad Medicaid HCBS available and the variation across states, a nationwide HCBS model should focus on inclusivity in program design. One consideration might be adding HCBS beneficiaries and their loved ones to the team that develops a national HCBS model. Person-centered care, in which individuals are active participants in and advocates for their own health, must consider both the HCBS beneficiaries and their social communities.
Because Medicaid HCBS are available only to individuals with limited financial assets, some disparities are inevitable. However, delivering services to a wider audience can help broaden the reach of HCBS and reduce other program inequities. A national model may alleviate differences between and within states, only if the architects of such policies focus on meeting diverse beneficiary needs more broadly.
The authors would like to thank Sari Shuman and Stephanie Hughes for their constructive feedback toward developing this blog.
Lawren Bercaw
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