More Than Half a Million People in the U.S. Are On Waiting Lists for Medicaid Home- and Community-Based Services, But Waiting Lists Can Both Overstate and Understate Unmet Need

Other Findings From Our 50-State Survey of Medicaid HCBS Programs Focus on How States Are Responding to Chronic Workforce Shortages That Were Exacerbated by the Pandemic

About 656,000 people across the country were on state waiting lists for home and community-based services financed through Medicaid waivers in 2021, finds a new KFF analysis. But such waiting lists are an incomplete and often inaccurate measure that can both overstate and understate unmet need.

The data about waiting lists are among the latest findings from the 20th KFF survey of state officials administering Medicaid HCBS programs in all 50 states and Washington DC.

Waiting lists can sometimes overstate the need for services because not all states screen for Medicaid eligibility before adding people to their lists, which inflates the numbers with people who may never be eligible for services. In all years since 2016, over half of people on HCBS waiting lists lived in states that did not screen people on waiting lists for eligibility, the new analysis found. This also is a key reason that waiting lists are not comparable across states.

Waiting lists can also understate need. They reflect the populations a state chooses to serve, as well as the resources it commits. In many cases, people may need additional services, but because the state doesn’t offer them—or doesn’t offer them to specific populations, such as people ages 65 and older—they would not appear on a waiting list.

HCBS waiting lists remain a source of concern to policymakers and proposals to eliminate them have been put forth by both Republicans and Democrats.

Many of the other findings from the 50-state survey focus on chronic workforce shortages that were exacerbated by the COVID-19 pandemic and are the biggest challenges facing state Medicaid HCBS programs. Key takeaways from that analysis include:

The full analyses of the survey findings are available here:

For more data and analyses about Medicaid HCBS, visit kff.org.

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