About 607,000 people were on waiting lists for Medicaid home and community-based services in 2025, up 14% from 2024, and 74% of them were people with intellectual or developmental disabilities. Forty-one states reported having lists.
The figures come from KFF's survey of the officials who run Medicaid home care programs in every state, published Nov. 20, 2025, by Alice Burns, Abby Wolk and Molly O'Malley Watts. State officials answered between April and July 2025. Every state except Florida responded.
Who is waiting
People with intellectual or developmental disabilities, or I/DD, are the largest group by far, about three-quarters of everyone on a list. Twelve states reported new waiting lists covering 20 waivers, including new lists for I/DD services in Illinois, Louisiana, Missouri, Utah and Wisconsin. Lists grew in 29 states and shrank in 12.
How long people wait
Among people who came off waiting lists and got services, the average wait was 32 months, down from 40 months in 2024. For I/DD waivers, the average was 37 months, and for waivers serving people with autism it was 63 months. In states that do not screen people for eligibility before adding them to a list, the average wait for I/DD services was 49 months, compared with 32 months in states that do screen.
Why the lists are an imperfect measure
KFF cautions that waiting lists do not measure unmet need precisely. Six states that do not screen for eligibility (Florida, Iowa, Oklahoma, Oregon, South Carolina and Texas) together hold about 325,000 people, more than half the national total. Some people on those lists may not qualify. Lists also change when states clean them up: Texas removed duplicate names and cut its interest lists by more than 160,000 people.
Most people on lists are not without any help. KFF estimates that more than 80% are eligible for Medicaid state plan services, such as personal care or home health, while they wait for a waiver slot. Waitlists that individual agencies keep because they lack staff are not included in these counts.
Context
KFF estimates that 5.1 million Medicaid enrollees use home care, about half of them through waivers. Under CMS's Medicaid Access Rule, states will have to report waiting list information publicly starting in 2027, which may make the numbers more consistent across states.
The survey was completed before most provisions of the 2025 federal budget reconciliation law take effect, so it offers a baseline for measuring later changes.
Why this matters for providers and DSPs
The survey confirms that demand for I/DD services keeps outrunning funded waiver slots, and that the average person with I/DD waits about three years. For providers, that is a growing pool of people who will need staff when states open slots, in a field that already struggles to hire. The 2025 numbers also give agencies and advocates a baseline for tracking whether federal Medicaid changes, state budget cuts or workforce shortages lengthen waits.