Nearly 650,000 people, 649,900 by KFF's count, were waiting for Medicaid home and community-based services in 40 states in 2026, and 72% of them, almost three in four, had intellectual or developmental disabilities. Those figures come from KFF's 2026 survey of state Medicaid officials, which states completed between April and August 2026 and KFF published Oct. 5, 2026. It is the most recent national count as of October 2026, and the total is about 7% higher than in 2025. For the news story, see KFF 2026: 649,900 on HCBS waiting lists, up 7%.
Behind that number are thousands of families who have been told a service exists, that their family member may qualify, and that they must wait. This brief explains why waiting lists exist, how states decide who comes off them, what the numbers can and cannot tell you, and what changes are scheduled.
Why there are waiting lists
Many community services for people with I/DD are paid for through a Medicaid waiver, most often under section 1915(c) of the Social Security Act. Waivers let states offer a wider range of services than the regular Medicaid state plan. They also let states limit how many people they serve.
Federal rules make the cap explicit. When a state applies for a 1915(c) waiver, it must state how many people it intends to serve each year, and that number becomes a limit on the program unless CMS approves an increase. When more people want services than there are funded openings, often called waiver slots, a waiting list forms.
State plan services work differently. KFF notes that states may not use waiting lists to limit the number of eligible people who use state plan services, such as personal care. That is why most people on waiver waiting lists can get some Medicaid help while they wait, but not the fuller package a waiver offers. For how waivers work, see What is an HCBS waiver?
How states decide who comes off the list
There is no single national method. States choose, and they often use different rules for different waivers. Three common approaches:
| Approach | How it works | Example |
|---|---|---|
| First come, first served | People are enrolled in the order they joined the list when funding opens | Texas interest lists, where people who have waited longest are enrolled first |
| Priority by urgency | People are sorted by how soon they need services, and funding goes to the most urgent first | Pennsylvania's PUNS categories; Ohio's immediate and current need categories |
| Screen first, then list | The state checks eligibility before adding someone, so the list holds people likely to qualify | 32 of the 40 states with lists screened for at least one waiver in 2026, per KFF |
Texas: first come, first served
Texas calls its lists interest lists. The state Health and Human Services Commission (HHSC) says people are placed on them on a first-come, first-served basis, that allocations depend on available funding, and that people who have waited longest are enrolled first. Getting other services does not affect a person's place on the list. For the Home and Community-based Services (HCS) program, run by HHSC's intellectual and developmental disability services, the agency released 315 interest list slots from September 2025 through April 2026 and then stopped. In an Aug. 28, 2026, notice, HHSC said HCS funding for the two-year budget was not enough to support more releases and that none are projected for fiscal 2027. That is the cap at work: a list only moves when funded openings do.
Pennsylvania and Ohio: urgency first
Pennsylvania uses a tool called PUNS, the Prioritization of Urgency of Need for Services. A supports coordinator completes it with the person and family, and it is reviewed during the annual individual support plan process. It sorts needs into three groups: emergency (now or within six months), critical (within two years) and planning (two to five years away). The state's manual says PUNS is central to how it manages the waiting list and to its goal of ending the emergency waiting list for adults. For recent progress, see Pennsylvania ID/A emergency waiting list down 31%.
Ohio's rule, effective July 1, 2025, requires county boards of developmental disabilities to assess people with a standard tool. An immediate need means a risk of substantial harm if nothing is done within 30 days. A current need means an unmet need expected within 12 months, such as a caregiver whose health is declining or a young person aging out of children's services.
How long people wait
KFF found that people who came off lists in 2026 had waited an average of 34 months before getting waiver services (35 of the 40 states with lists answered), up from 32 months in 2025. Waits varied by group:
| Waiver group | Average wait, 2026 | Average wait, 2025 |
|---|---|---|
| All waiver groups | 34 months | 32 months |
| People with I/DD | 38 months | 37 months |
| Waivers serving people with autism | 65 months | 63 months |
| Medically fragile or technology-dependent children | 8 months | not in KFF's data note |
| Older adults and adults with physical disabilities | not in KFF's data note | 15 months |
Figures are from KFF's 2026 and 2025 surveys. KFF's 2026 data note does not give an updated wait for older adults and adults with physical disabilities, so the 15-month figure is from 2025.
Screening made a difference. In KFF's 2025 survey, people with I/DD in states that screen for eligibility waited an average of 32 months, compared with 49 months in states that don't. The 2026 data note does not update that comparison.
What the numbers can and cannot tell you
KFF cautions that waiting lists are an incomplete measure of unmet need and are hard to compare across states. Some reasons:
- Some lists include people who may not qualify. The eight states that did not screen anyone for eligibility in 2026 (Alaska, Florida, Iowa, New Mexico, Oklahoma, Oregon, South Carolina and Texas) held 56% of everyone on a list, about 362,000 people. In those states, people waiting for I/DD waivers made up 78% of the lists.
- Some counts are old. Florida and South Carolina did not answer KFF's 2026 survey, so KFF carried forward Florida's 2022 answers and South Carolina's 2025 answers.
- Some need never shows up on a list. A state that doesn't cover a service has no list for it. A state may enroll everyone but limit services to control spending. And people can be enrolled but still wait because no provider has staff available.
- Families sometimes sign up early. KFF cites research finding that in some first-come states, families put children on I/DD lists young, expecting the need to be real by the time their turn comes.
- Methods change. Ohio's switch to assessing waiver eligibility cut its list by nearly 70,000 people between 2018 and 2020, KFF reported. Texas removed duplicate names across lists in 2025, which lowered its count by more than 160,000.
For the latest national figures, see our coverage of KFF's 2026 waiting list survey. For the year before, see our coverage of KFF's 2025 survey.
What is scheduled to change
Under a 2024 federal rule, states with a capped waiver and a waiting list must report to CMS each year on how they run the list, whether they screen for eligibility, how many people are on it and how long newly enrolled people waited. The requirement is in 42 CFR 441.311(d), and paragraph (f) starts it three years after July 9, 2024, so as of October 2026 that reporting is set to begin in July 2027. States will also report how long services take to start after approval and what share of authorized hours were delivered. KFF notes the new data will still leave gaps, such as how long people wait for state plan services.
Why this matters for providers and DSPs
- Waiting lists are partly a staffing story. KFF says lists reflect the workers available as well as the money. When agencies can't hire, people can be enrolled and still go without services, and KFF notes some providers keep waiting lists of their own.
- The people you support may have waited years. Many reach services only after a long wait, and priority systems move people in crisis first. Knowing that history helps staff understand the stress families bring to intake.
- Urgency categories depend on good information. In priority systems, the details in plans and notes, such as a caregiver's declining health or new behavioral needs, can shape how a need is categorized. Accurate, timely records from DSPs and supervisors help supports coordinators do that job.
- Slot decisions shape demand. New slots mean more people looking for providers at once; a pause like Texas's means fewer new referrals. Watching state budgets and slot notices helps agencies plan hiring.
- Waiting is not the same as getting nothing. Many people on lists are eligible for state plan services such as personal care in the meantime. Families may not know that, and staff can point them to their supports coordinator.
For how waivers compare with facility care, see HCBS vs. ICF/IID.