Nearly 650,000 people were on waiting or interest lists for Medicaid home and community-based services in 2026, and 72% of them were waiting for waivers that serve people with intellectual or developmental disabilities. KFF published the figures on Oct. 5 in a data note drawn from its 24th annual survey of state Medicaid home care officials.
The exact count is 649,900 people on waiting or interest lists for HCBS waivers, about 7% more than in 2025. Forty states keep such lists. Thirty-two states reported more people waiting than a year earlier and seven reported fewer. Florida and South Carolina did not answer the 2026 survey, so KFF used their 2022 and 2025 responses.
The 2026 numbers
| Measure (KFF survey, April–August 2026) | Figure |
|---|---|
| People on waiting or interest lists | 649,900 |
| Change from 2025 | about +7% |
| States with lists | 40 |
| Share waiting for I/DD waivers | 72% |
| Average wait, all waivers | 34 months (32 in 2025) |
| Average wait, I/DD waivers | 38 months |
| Average wait, autism waivers | 65 months |
Figures as of the 2026 survey. Eight states that do not screen anyone for eligibility before adding them to a list (Alaska, Florida, Iowa, New Mexico, Oklahoma, Oregon, South Carolina and Texas) hold 56% of everyone waiting. In those states, people waiting for I/DD waivers make up 78% of the lists. A study KFF cites found that some families sign children up young, expecting to need services by the time their name comes up, so lists are an imperfect measure of need.
Lists that opened and closed
Seven states dropped waiting lists for eight waivers. Nebraska no longer reports any, and Oregon ended a 1,000-person list for older adults and people with physical disabilities. Washington started a new list for people with I/DD (275 people), and Kentucky one for people with brain or spinal cord injuries (5 people).
Where living arrangements are known, 95% of people waiting live in the community. KFF says more than 80% of people on the lists qualify for personal care or other state plan services while they wait, but not for waiver-only services such as supported employment or adult day care.
New federal reporting starts July 2027
Under 42 CFR 441.311(d), part of the 2024 access rule, states must report to CMS every year on how they manage their Medicaid waiver waiting lists, whether they screen and re-screen people for eligibility, how many people are waiting, and how long newly enrolled people waited. They must also report how long homemaker, home health aide, personal care and habilitation services take to start after approval, and what percentage of authorized hours were delivered. The requirement begins three years after July 9, 2024.
Why this matters for providers and DSPs
A waiting list is partly a staffing measure. KFF points out that states sometimes use lists to manage worker shortages and that three in 10 direct care workers are immigrants, so immigration changes could make the lists longer. The new federal measure of authorized hours actually delivered will show, state by state, where provider agencies cannot staff the hours people already have. For agencies planning growth, the I/DD wait of more than three years is the demand that would follow any new waiver slots, and that demand only becomes service if there are DSPs to deliver it.