Waiver Waitlists Across the Country, as Parents Report Them

What this note is

Why this matters

Home and Community-Based Services (HCBS) waivers, often called "DD waivers," "IDD waivers," or state-specific names, are what pays for things like respite care, in-home support, and sometimes ABA once a family is off Medicaid financial-eligibility rules via TEFRA/Katie Beckett (see the companion note on that program). The waitlist for the waiver itself, separate from TEFRA eligibility, is a second wait many parents did not expect.

The self-reported range, state by state (parent comments, one big 2026 thread)

A parent started a thread asking people to share their state's Medicaid waiver waitlist length, giving their own examples of NC at about 15 years and SC at about 6 months to make the scale of variation clear. (r/Autism_Parenting, "What is the Medicaid Waiver Waitlist like in Your State?", score 1, comments 9, posted 2025-11-26)

Replies to that thread, each an individual's self-report:

• Arkansas: roughly 2 years (comment score 1)
• Indiana: 3 years (comment score 1)
• California: approved within about 3 months; the commenter's son was diagnosed at 3 and already had a state service coordinator from early intervention at age 2, which the commenter credits for the fast approval (comment score 2)
• Nevada: no Medicaid waiver program exists there at all, per the commenter (comment score 1)
• Kentucky: 9 years (comment score 1)
• Virginia: not first-come-first-served, waitlist time varies by assessed need level; this family got an intake appointment about 3 months after diagnosis, in a well-resourced county (comment score 1)
• New York: no wait, but couldn't even apply until leaving the school system in New Jersey due to parental income rules, about 15 years before the comment was posted (comment score 2)
• Colorado: a couple of months, for a level 3, nonverbal child (comment score 2)

Virginia, a second data point: "average wait time... 1-3 years," but longer for some

In a separate thread, a parent asked about realistic DD Waiver wait times, noting Virginia had over 15,000 people on the list with the parent's own two children both classified "Priority 1" and still waiting more than 10 years for that priority category as described in the post. A commenter who said they work for a Medicaid provider in Virginia stated the average wait for "priority" cases is 1-3 years, and warned that moving states means restarting the waiver process from zero. A third commenter in Colorado said they filed paperwork in April 2024 and were still on the waitlist over a year later, while also just losing a different Medicaid-linked benefit as the child turned 9, explicitly advising the poster "do not come here" about Colorado, which conflicts with the more optimistic Colorado report in the thread above. This is a good example of how "state name" alone does not predict the wait; category, county, and year all shift it. (r/Autism_Parenting, "Realistic Timeframe for DD Waivers? Any Feedback", score 0, comments 6, posted 2026-05-04)

Minnesota: a parent's full-stack timeline of stacked waitlists

One Minneapolis-area parent laid out every wait they hit in sequence: about 1 year to get the autism diagnosis itself, a 24-month waitlist for one of the only autism preschools in the area, 5 months to get the DD waiver, and, as of posting, 4 months already elapsed waiting on a decision for TEFRA (called "medical assistance that waives parent income for disabled children" in the post). The same parent had also gotten nowhere yet with a separate PCA (personal care assistance) program application. (r/Autism_Parenting, "Autism resources - WAITLISTS", score 4, comments 5, posted 2024-09-26)

Why some families are actively planning to move states over this

Multiple threads show parents treating the waiver waitlist as a relocation-decision input, not just an inconvenience:

• A Texas parent with a level 3, 6-year-old child described a waiver waitlist "over 15 years long," respite care "pretty much non existent," and Texas not having expanded Medicaid, concluding they will "eventually have to move."

(r/Autism_Parenting, "Best States to live for Autistic Individuals", score 9, comments 54, posted 2025-10-08)

• A parent in Oregon, which they said has "a great Medicaid waiver program" on paper, said the real bottleneck was finding providers and caregivers who actually accept it, and was weighing California, Philadelphia, or Arizona against Texas (family's home state), which they ruled out specifically because of "an astronomically long waitlist for the IDD program."

(r/Autism_Parenting, "Looking for advice regarding moving to a new state...", score 6, comments 5, posted 2024-12-31)

• A Nevada parent said their state has no Medicare/Medicaid waiver and no respite care, and was comparing a return to the higher-cost Boston area against staying in a state with no support system at all.

(r/Autism_Parenting, "Where can we move to get good autism supports for our family?", score 4, comments 13, posted 2023-12-07)

Two program-specific data points worth flagging separately

• Colorado's "Children's Extensive Support" (CES) waiver: a parent simply asked how long the wait had been for others; no answers were visible in the thread at time of collection, so this is an open question, not a data point.

(r/Autism_Parenting, "Children's Extensive Support Waiver - COLORADO", score 1, comments 0, posted 2024-09-27)

• Kentucky's "Michelle P. Waiver" (a specific ID/DD waiver, referred to informally in the post as "Michelle P Grant"): a parent asked what being "waitlisted" for it actually means and what the next steps are, again with no answer visible in the thread.

(r/Autism_Parenting, "Waitlisted for Michelle P grant", score 2, comments 2, posted 2025-08-04)

Takeaways for a parent-facing FAQ

• There is no single "national waitlist number." Self-reported waits in this set of threads range from a few months (CA, CO in one report) to 15+ years (TX, NC), often for the same program type.
• The same state can produce contradictory reports (Colorado: "a couple months" in one 2026 thread vs. "still waiting over a year, plus we lost other benefits" in another 2026 thread), which tracks with commenters' point that priority level and category matter as much as the state.
• The waiver waitlist is a separate wait from the TEFRA/Katie Beckett income-eligibility wait and the diagnosis waitlist; a family can be stacking three separate multi-month-to-multi-year waits at once, as the Minnesota parent's timeline shows.
• Moving states to escape a long waitlist was described repeatedly as a real strategy families consider or execute, but commenters warned it usually means restarting the waiver application process from the beginning in the new state.