Hundreds of thousands of people with developmental disabilities remain on waiting lists for services across the country and their numbers are growing.

A new analysis finds that nearly 700,000 people in 38 states are on waiting or interest lists for home and community-based services. That total is up 6% since 2021.

The findings come from a survey of Medicaid programs by KFF, formerly known as Kaiser Family Foundation, which conducts health policy research.

Almost three-quarters of those waiting for home and community-based services are individuals with intellectual and developmental disabilities, data shows, while seniors and adults with physical disabilities account for the rest.

Currently, people are waiting an average of three years for waivers, but most do have access to other services through Medicaid state plans while they wait, KFF found.

One factor driving changes in the number of people reported to be waiting for services, KFF noted, is that states are increasingly using alternate terms such as “interest lists.” When the organization modified its survey to account for new terminology, it found that there are actually more people on interest lists this year than waiting lists.

In addition, more states are moving to screen individuals for Medicaid eligibility before adding them to waiting lists, which has limited volumes.

Going forward, KFF warns that ongoing shortages of direct support professionals could exacerbate waiting and interest lists.

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