The 3 autism waitlists nobody explains at diagnosis

There are 606,895 people on a Medicaid waiting list in this country right now. In Texas, the wait for one of those programs runs longer than childhood: 15 years, and some accounts put it closer to 18. That is not a backlog. Nobody is behind. That number is what the system was built to produce.

Do this first: file for your state's waiver today

If you take one thing from this, file for your state's Medicaid waiver program today. Not when things get hard, and not when someone mentions it at an IEP meeting six years from now. In most states nothing is lost by getting on a list you later turn down, and everything is lost by getting on it too late.

Three lines, not one

When parents say "we're on the waitlist," they usually picture one line at a restaurant. There are three, run by three different systems, funded three different ways, and they do not run at the same time.

1. Line one, the diagnosis. Getting evaluated and getting the diagnosis on paper. Almost nothing downstream moves until this is done.
2. Line two, treatment. Your child already qualifies. This line is decided by whether an agency has a clinician who is not already buried in other cases. It is raw supply of staff.
3. Line three, the Medicaid Home and Community Based Services (HCBS) waiver. The one nobody warns you about at diagnosis.

Texas: an "interest list"

Texas does not call these waiting lists. Officially they are interest lists, and the word choice is doing the most. A waiting list implies somebody is eventually coming for you. An interest list implies only that you expressed a preference. If your child is diagnosed at four and the wait is 15 years, they come off that list at 19, after aging out of every school based service they had.

The line is the budget

Section 1915(c) of the Social Security Act lets a state legally cap the number of waiver slots it funds each year. That cap is a line item set by the legislature, the same way they budget roads or schools.

Line three is not a failure at all. It's working exactly as designed. The line is the budget.

Lines one and two are real capacity failures with real causes. Line three is a spending decision made on purpose by people who could make a different one. They do not respond to the same pressure. Calling a clinic more often does nothing to a budget appropriation, and writing your state representative does not hire a BCBA.

The state that ended its waitlist

New Mexico offered a slot to everyone already on its developmental disabilities waiver list. The list went from roughly 4,100 people in 2022 to roughly 111 by fiscal year 2024, and the state now runs allocations every month. No one invented a new therapy. One state decided to pay for the people already waiting. That fixed one waiver, not every list in the state, but the lesson holds: a 15 year list is a choice states are making one budget cycle at a time.

What to do about each line this week

• Line one: ask your pediatrician directly whether they can evaluate, or whether there is an ECHO trained clinician near you, before assuming a specialty center hours away is your only option.
• Line two: make sure the diagnosis is properly coded and medical necessity is clearly documented, and learn what EPSDT means for your family. "It's not in our plan" is not a legally valid answer for a Medicaid eligible child.
• Line three: file today for every program you might qualify for, and keep your address and phone number current with the state for however long it takes.

The length of your wait has never been a measure of how hard you fought. Let go of any guilt telling you otherwise. Which line are you stuck in? Tell me in the YouTube comments.

Ashleigh Dominguez, MS, BCBA, is licensed in North Carolina, Georgia, and Iowa. This article is general education based on the episode. It is not clinical, legal, or treatment advice for your child or your state. Corrections and sources are listed in the YouTube description.