About 607,000 people were waiting for Medicaid home and community-based services in 41 states in 2025, and roughly three in four of them had intellectual or developmental disabilities. Those figures come from KFF's 2025 survey of state Medicaid officials, published Nov. 20, 2025, which is the most recent national count as of September 2026.
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 | 35 of the 41 states with lists screened for at least one waiver in 2025, 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 2025 had waited an average of 32 months, down from 40 months in 2024. Waits varied by group:
- People with I/DD: 37 months on average
- People with autism: 63 months, for waivers serving that group
- Older adults and adults with physical disabilities: 15 months
Screening made a difference. In states that screen for eligibility, people with I/DD waited an average of 32 months, compared with 49 months in states that don't.
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 six states that did not screen anyone for eligibility in 2025 (Florida, Iowa, Oklahoma, Oregon, South Carolina and Texas) held more than half of everyone on a list, about 325,000 people.
- 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 2025 waiting list 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. As of September 2026, that reporting is set to begin in July 2027, three years after the rule took effect. 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.