More Clarity Emerges Around HCBS Waiting Lists

Waiting lists for home- and community-based services have long been a topic of discussion, despite the lack of clarity around them. It turns out they have included 700,000 people in most years since 2016, according to a new data analysis from the Kaiser Family Foundation (KFF).

When changes in numbers have occurred over the years, it has been due to state policy decisions.

Some states don’t screen for Medicaid eligibility before adding an individual to a waiting list, for instance. That’s one example of how state policy can affect the numbers.


KFF used Ohio to illustrate how policy change can, ultimately, impact waitlist volume. The amount of people on waiting lists decreased by 155,000 between 2018 and 2020 due to the state’s adoption of a waiting list assessment of waiver eligibility.

Currently, there are only 6 states — Alaska, Illinois, Iowa, Oklahoma, Oregon, and Texas — that don’t screen for any waiver eligibility. These states are home to more than half of all people on waiting lists, according to KFF’s analysis.

Total enrollment on waiting and interest lists saw a 6% bump between 2021 and 2023. This was due to an increase in 18 states and a decrease in 16 states. States such as New Mexico and Virginia, in particular, saw a notable decrease.


KFF noted that states that are seeing an increase in people on waiting lists may have more accurate data.

“For example, Texas revised its questionnaire to gather more data about people who are interested in HCBS and the number of people on waiting lists/interest lists statewide rose from 312,000 in 2021 to 343,000 in 2023,” KFF wrote in the analysis. “New York is currently building a portal to track the services received and the number of people waiting for services. The portal will help target provider capacity but may also show an increase in the number of people ‘waiting’ for services that is attributable to improved data collection rather than an increase in unmet needs.”

The analysis also examined what kinds of individuals were on these waiting lists.

The majority of people on the waiting lists have intellectual or developmental disabilities, making up 72% of the total waiver waiting list population. Seniors and adults with physical disabilities made up 25%.

On average, people on waiting lists waited 36 months to receive home- and community-based waiver services in 2023, a decrease from 45 months in 2021.

In general, people on waiting lists are also usually eligible for other types of home- and community-based services.

“While waiting for waiver services, people living in the community are likely to be eligible for other HCBS through Medicaid state plans,” KFF wrote. “Of the over 4 million people who use [home- and community-based services], KFF estimates that roughly half use services provided through the Medicaid state plan, such as personal care to help with bathing or preparing meals, therapies to help people regain or acquire independent living skills, and assistive technology. States may not use waiting lists to restrict the number of people eligible to use such services and over 80% of people on HCBS waiting lists are eligible for personal care or other state plan services.”

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