The critical role of Medicaid home‐ and community‐based services in meeting the needs of older adults in the United States

1. INTRODUCTION

The demand for long‐term services and supports will undoubtedly increase as the United States baby boom population ages into very old ages at which disability prevalence is greatest. Home‐ and community‐based services (HCBS) are personal care, health care, and social services provided in the home that can help support older adults with cognitive difficulties and/or functional limitations to age in place, that is to remain living safely and independently in one's own home. HCBS can include, but is not limited to, services such as periodic visits from a personal care aide, home health care, adult day services, transportation to/from medical visits, and respite care for family (unpaid) caregivers. Reflecting most older adults' preferences to age in place, a myriad of state and federal policy initiatives beginning in the 1980s have shifted long‐term care from institutions to the home. ¹ , ² , ³ , ⁴ , ⁵ , ⁶

In the absence of a national long‐term care insurance system, most HCBS is paid out‐of‐pocket or by Medicaid, a jointly‐funded federal and state program that covers over half of the $286.5 billion spent on HCBS in the United States. ⁷ Federal law requires state Medicaid programs to cover care delivered in nursing homes. States can also offer HCBS through waivers, provided costs do not exceed expected institutional care (e.g., nursing home) costs. ⁴ , ⁵ , ⁶ Despite HCBS waivers being structured as a mechanism for states to experiment with HCBS, waivers have over time become an established financing mechanism of HCBS in the United States with the majority of Medicaid HCBS funded through 1915(c) waivers. ⁵ , ⁶ , ⁸ , ⁹ , ¹⁰ , ¹¹ The result is a patchwork of Medicaid HCBS policies that vary both across and even within states for different populations. ⁸ , ¹² , ¹³ Despite increasing focus, funding, and provision of Medicaid HCBS to support aging in place, limited rigorous evaluation exists regarding the effectiveness of state Medicaid HCBS programs.

In this issue, Yang et al. ¹⁴ examine the association of Medicaid HCBS with unmet needs for assistance with basic or instrumental activities of daily living and highlight inequities in unmet need. Yang et al. exploit variation in Medicaid HCBS expenditures as a proxy for Medicaid HCBS program generosity to quantify relationships between Medicaid HCBS and unmet needs by geography, race, and gender. Using survey data from Medicaid beneficiaries participating in the U.S. Health and Retirement Study, Yang et al. examine the association between state‐level Medicaid HCBS expenditures by quartile and a measure of unmet need for care. They find evidence that higher HCBS expenditures are associated with a lower prevalence of unmet needs. Using stratified models, these findings were concentrated among three subgroups: non‐Hispanic older white adults, women, and those residing in urban areas. These findings contribute to a growing body of evidence illustrating the benefit of Medicaid HCBS, but also inequities in unmet need of older adults with cognitive difficulties and/or functional limitations. Moreover, the article highlights the need to better understand the comparative effectiveness of Medicaid HCBS programs and the role Medicaid HCBS may play in exacerbating or ameliorating existing inequities.

2. MEDICAID HOME‐ AND COMMUNITY‐BASED SERVICE PROGRAMS VARY SIGNIFICANTLY BY STATE

State‐level variation in HCBS reflects the inherent variability of state Medicaid programs, but is exacerbated because beginning in the 1980s, states began using waivers to cover HCBS instead of state plans. ¹³ 1915(c) waivers have emerged as a primary mechanism by which states fund HCBS. Notably, 1915(c) waivers allow states to experiment with eligibility criteria, availability of services, and/or intensity of services available.

Despite nearly 40 years of state‐level variation and experimentation, limited rigorous causal evidence exists regarding the role of state Medicaid HCBS programs and care quality. This is due, in part, to the limited documentation of Medicaid HCBS program characteristics, change over time, and care experiences of enrolled populations, thereby precluding rigorous analyses to evaluate the comparative effectiveness of the components of different state Medicaid HCBS programs. Thus, existing research examining effects of Medicaid HCBS, such as Yang et al. and others, is largely constrained to analyses using expenditures as proxy for state Medicaid HCBS program generosity, which obscures program features such as the type and availability of service offerings as well as accessibility of services. ¹⁵ Understanding that increased investments in Medicaid HCBS are associated with reduced unmet need is important. However, given the experimental nature of Medicaid HCBS, it is also critical to understand the accessibility of services and what services, or combination of services, drive programmatic outcomes. Ultimately, this is a key step to developing an evidence‐based approach to finance and deliver equitable access to high‐quality HCBS.

3. THE ROLE OF MEDICAID HOME‐ AND COMMUNITY‐BASED SERVICES TO MEET THE NEEDS OF OLDER ADULTS

The variation in eligibility criteria and availability of HCBS across states has not only led to a lack of data allowing causal evaluations, but the complexity of HCBS may result in and/or exacerbate barriers to accessing services. ¹⁶ , ¹⁷ , ¹⁸ , ¹⁹ , ²⁰ Medicaid beneficiaries face significant administrative burden and complexity that include, but are not limited to, costs to patients, eligibility requirements, availability of local service providers, and time delays. ²¹ These barriers contribute to and exacerbate existing disparities in access to HCBS. ¹⁸ , ²² , ²³ While the population served by Medicaid is disproportionately comprised of people of color and people from historically marginalized communities, racial disparities exist with respect to access, receipt, and effects of Medicaid HCBS on patient outcomes. ¹⁵ , ¹⁶ , ¹⁷ , ¹⁸ , ¹⁹ Similarly, Medicaid beneficiaries receiving long‐term services and supports who reside in rural areas are less likely to receive HCBS and more likely to receive nursing facility services than their urban peers after adjusting for beneficiary characteristics. ²⁴ Identifying inequities in unmet need associated with Medicaid HCBS expenditures in a nationally‐representative sample is an important piece of the puzzle to understand the role of Medicaid HCBS in meeting the needs of older adults with disabilities, and when it fails to do so.

Unmet need is a patient‐centered outcome of interest that is important to examine as it is also associated with adverse outcomes, such as emergency department visits and mortality. ²⁵ , ²⁶ Yet, accurately capturing unmet need is an empirical challenge. Unmet needs may result in adverse consequences beyond hospitalizations and mortality which can also impact quality of life, such as wetting or soiling clothing, not bathing, not getting dressed, and not going outside. These consequences are more prevalent among persons with multiple chronic conditions or dementia, or at the end of life. ²⁷ Characterizing and measuring the prevalence of unmet need and these adverse consequences will advance understanding of costs to individuals and society, as well as identify the types of HCBS‐type services and supports would best reduce unmet need and adverse outcomes and improve quality of life.

In addition, as Yang et al. point out, in the Health and Retirement Study, researchers are unable to tease out individual preferences for care. This is particularly notable given the potential for environmental modifications to assist individuals in meeting their needs and evidence that suggests older adults in states with lower Medicaid HCBS spending may be more likely to receive care from an unpaid family member or friend, that is, a family caregiver, than their counterparts in states with high Medicaid HCBS spending. ²⁸ Thus, understanding not only if care was provided, but who provided the care, the quality of care, and if the care was sufficient to fully meet the needs of the older adult are key measurement considerations for future work examining unmet needs.

4. ENSURING ADEQUATE SUPPLY OF CAREGIVERS TO MEET THE NEEDS OF OLDER ADULTS

In light of expected increases in the demand for HCBS, it is unclear whether the future supply of caregivers will be adequate. While most older adults receive some care from a family caregiver, trends in the use of paid care provided in the home increased at nearly twice the rate as that of family caregiving from 2004 to 2016. ²⁹ However, differences in the use of paid versus unpaid home care by rurality exist as older adults in rural areas are less likely to use paid home care and more likely to rely on unpaid care than their urban peers. ³⁰ Growth of caregivers who are paid and trained to provide care, that is, the direct care workforce, is expected to increase at a faster rate than the national average between 2020 and 2030. ³¹ However, when adjusting for population growth, the direct care workforce per capita decreased 1.5% from 2010 to 2019 and the supply of direct care workers is not keeping pace with demand. ³² , ³³

In addition, an increasing number of adults are adopting family (unpaid) caregiving roles. ³⁴ In 2019, among those providing care, family caregivers were caring for an increasing number of recipients; providing more complex medical care; and providing more hours of care compared with 2015. ³⁴ This increase in caregiver objective burden is juxtaposed against an expected decrease in the supply of potential family caregivers. ³⁵ Some evidence suggests family caregivers who live in states with higher HCBS expenditures have lower stress levels. ³⁶ , ³⁷ With approximately 37.1 million American adults providing unpaid care to adults 65+, ³⁸ understanding the effects of Medicaid HCBS programs for caregivers, as well as care recipients, is a key consideration when evaluating HCBS programs.

5. CONCLUSION

Ensuring equitable access to high‐quality, long‐term care in home‐ and community‐based settings is a key issue with increasing policy attention. In 2021, President Biden signed the American Rescue Plan Act, which authorized an unprecedented investment in Medicaid HCBS—approximately $37 billion distributed in support of HCBS across all 50 states as of December 2023. ³⁹ In addition, in April 2023, President Biden issued an Executive Order on Increasing Access to High‐Quality Care and Supporting Caregivers to expand long‐term care options by improving the supply of caregivers by increasing support for family caregivers and the direct care workforce. While these policy initiatives are unparalleled in the United States to date, these are temporary or reversible initiatives. Yet ensuring an adequate health services infrastructure to meet the needs of adults with disability is a challenge that will only increase as the population ages. Thus, developing a rigorous evidence‐based framework to guide development, implementation, and financing of HCBS in Medicaid, and more broadly, is critical to meet the needs of adults with disability.

The current data landscape, however, precludes researchers' ability to develop systematic, causal evidence of HCBS waiver services. Detailed information on individual waiver characteristics is currently only accessible by downloading .pdf files of each of over 400 current waiver applications, which can be upwards of 200 pages, and manually identifying and cataloguing waiver characteristics (e.g., population served and types of services). Indeed, researchers have used this method to describe aspects of HCBS waivers. ⁴⁰ However, this process is not only time‐consuming but potentially subject to error. Thus, limited systematic, longitudinal data on Medicaid HCBS programs exist. Developing a historical database systematically documenting state Medicaid HCBS programs would allow researchers to significantly advance the development of evidence on HCBS waivers, services, and subsequent patient outcomes by exploiting variation across states and over time.

Miller KEM, Thunell J. The critical role of Medicaid home‐ and community‐based services in meeting the needs of older adults in the United States . Health Serv Res. 2024;59(2):e14290. doi: 10.1111/1475-6773.14290