The number of states with waiting lists for people in need of home- and community-based services (HCBS) hasn’t seen much variation between 2016 and 2024, according to a new data analysis from the KFF.
In fact, there have been about 700,000 people on waiting lists, or interest lists, in most years since 2016.
Total enrollment in waiting lists went up by 2.6% between 2023 and 2024. Currently, there are more than 710,000 people on waiting lists.
When looking at individual states, 14 saw a decrease in the number of people on waiting lists, and 19 saw an increase.
KFF’s analysis noted that some of these changes can be explained by some states not screening for Medicaid eligibility before putting people on these lists.
“Changes in this policy may result in changes in waiting list volumes,” KFF wrote. “For example, between 2018 and 2020, the total number of people on waiting lists decreased by 155,000 or 19%. However, nearly half of that change came from Ohio’s implementation of a waiting list assessment of waiver eligibility, which reduced the size of the state’s waiting list by nearly 70,000 people.”
Since 2016, more than half of people on waiting lists were based in states that don’t screen for eligibility.
“One reason waiting lists provide an incomplete picture of need is that not all people on waiting lists will be eligible for services,” KFF wrote. “Interviews about HCBS waiting lists found that when waiver services are provided on a first-come, first-served basis, people enrolled in waiting lists are in anticipation of future need.”
KFF’s analysis also offered insight into the people on these waiting lists.
People living with intellectual or developmental disabilities made up 89% of waiting lists in states that didn’t screen for eligibility, and 49% in states that don’t screen prior to putting someone on the list.
Additionally, seniors and adults with physical disabilities made up 24% of waiting lists.
In terms of average wait time, people on the wait lists typically accessed services after about 40 months. This is a decrease from 45 months in 2021, but an increase from 36 months in 2023.
As federal funding for HCBS from the American Rescue Plan Act (ARPA) begins to dry up, it might become more challenging to address waiting lists, according to KFF.
“ARPA funding to reduce or eliminate waiting lists and that continuing those reductions are a top priority,” KFF wrote. “However, it is uncertain how many ARPA initiatives will be sustainable in the long run as the additional federal funds are exhausted.”
Additional ARPA funding is set to end in most states by March 2025.
However, the way that states handle waiting lists could soon change thanks to federal policy.
The “Ensuring Access to Medicaid Services” rule pushes for greater transparency and reporting from state agencies regarding waiting lists.
“The fact that CMS is requiring some more uniform national reporting around what happens in states that have these waiting lists is a huge benefit to individuals, providers and policymakers who are trying to improve the system,” Damon Terzaghi, senior director of medicaid advocacy at the National Alliance for Care at Home, previously told Home Health Care News. “CMS is really asking — how many people are on these waiting lists, and how long they are waiting between when they get placed on the list, and when they actually receive services. That’s a huge step forward.”