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Medicaid HCBS for People with IDD

By Carli Friedman, CQL Director of Research

Medicaid Home- and Community-Based Services (HCBS) 1915(c) waivers are the most common form of long-term services and supports (LTSS) for people with intellectual and developmental disabilities (IDD). Unlike acute care, HCBS are wrap-around supports that provide a wide range of services, including personal care, employment supports, transportation, technology, and many more. According to the Centers for Medicare and Medicaid Services (CMS), “HCBS are a key feature of state efforts to offer a meaningful choice to beneficiaries on where to live and how to receive services” (Lynch, 2020, p. 2)

Each state customizes their HCBS programs to fit the needs of people with IDD in their state, which can lead to large differences across states. As a result of the wide variance across states and programs, it is important to conduct national analyses of HCBS for people with IDD to examine service trends. The aim of the study was to examine Medicaid HCBS programs for people with IDD in fiscal year (FY) 2021. To do so, I analyzed 107 waivers from across the United States.

I found that $43.2 billion was projected for HCBS for 861,000 people with IDD in FY 2021. On average, waivers projected spending $47,315 per person with IDD (see figure below); however, waivers that were designed only for children with IDD projected spending less per person on average than waivers that served adults, or waivers that served both adults and children.

Average Spending Per Person on HCBS for People with IDD in FY 2021

Average spending per person with IDD on HCBS: $0-$40,000 = 53.3%. $40,001 to $80,000 = 29.0%. $80,001 to $120,000 = 10.3%. $120,001 to $160,000 = 5.6%. $160,000+ = 1.9%.

By looking further at the types of services provided by waivers and the amount of funding directed toward those waivers, we can learn more about HCBS priorities. In FY 2021, the service categories where the most money was allocated were: residential habilitation ($20.2 billion); supports to live in one’s own home ($8.2 billion); and day habilitation ($7.1 billion; see figure below).

IDD HCBS Waiver Spending by Category

Pie chart of spending categories. Residential habilitation 46.70%. Supports to live in one's own home 19.10%. Day habilitation 16.45%. Health and professional services 3.91%. Supported employment 2.43%. Respite 2.42%. Transportation 1.81%. Support coordination 1.74%. Community transition supports 1.33%. Prevocational 1.37%. Less than 1% each: family services, specialized medical equipment and assistive technology, financial support services, individual goods and services, adult day health, education, self-advocacy training and mentorship, and recreation and leisure.

“Medicaid HCBS 1915(c) waivers provide people with IDD with the services they need to function and thrive, and do so in their homes and their communities. Examining HCBS is necessary not only to determine how states and waivers prioritize different service lines, but also to determine areas of need and provide guidance on how states can best capitalize on the limited funding available to them. Doing so provides vital information for the field on areas of strength and gaps in service delivery to inform the expansion of community-based services, which, ultimately, can help efforts to reform the health care and LTSS delivery system to maximize people with IDD’s quality of life” (Friedman, 2023, p. 277).


This article is a summary of the following journal manuscript: Friedman, C. (2023). Medicaid Home-and Community-Based Services waivers for people with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 61(4), 269-279.