Medicaid HCBS Waiting Lists Show Extensive Unmet Need, Not the Whole Picture

KFF analyzed data on waitlists for home and community-based services (HCBS) from their recent survey of states. While most individuals on waitlists do have access to state plan services like personal care, more specialized services like adult day or assisted living wouldn't be available to someone living in a state with a limited number of waiver slots.

States use a number of authorities to offer HCBS as alternatives to nursing homes, including 1915(c) authorities which allow states to target specific populations based on needs, available services, and diagnosis, among others. Additionally, 1915 (c) authorities allow states to place caps on the number of individuals served to assist with state budget planning, leading to waitlists if demand outpaces approved slots.

KFF released an article on November 29, "A Look at Waiting Lists for Medicaid Home- and Community-Based Services from 2016 to 2023," outlining their findings which used expanded terminology from simply "waiting lists" to include catchall terminology that states may use to skirt reporting or change public perception.

KFF found more than 692,000 people are on waiting lists across the country, with the majority of those individuals residing in states that complete no eligibility pre-screening for placement on the list. Similarly, about 73% of people on waiting lists are seeking services through ID/D or autism specific waiver programs. Approximately 170,000 individuals were on waitlists for services through aging or physical disability waivers, with about 100,000 of those people residing in either Florida, Texas, or Maryland.

See the full data analysis and more information on KFF's website.