Inevitably (sorry, but it is somewhat inevitable), somewhere on your Autism treatment/therapy journey you will suddenly and unpleasantly find yourself wait listed.

A company or provider may explain that while they may accept your insurance, accept clients the age of your child, and serve the area you are located in, at the moment they are going to have to wait list you.

So why does waitlisting happen? And how should a parent/caregiver respond?

First, let's look at some reasons for being placed on the dreaded wait list:

  • If a provider is in the process of credentialing (securing relationships with funding sources), they may have to temporarily wait list clients until the set up process for billing is completed
  • If the provider/company is brand new, then there could be renovations to the physical location, staffing needs, or legal red tape on the part of the company that is causing a wait list
  • If a provider is expanding into serving new areas, there can often be a wait list for services because they would need a certain amount of clients in the new area to be able to hire staff
  • If a provider is going through significant unforeseen changes (e.g. a critical member of management abruptly quits), this will absolutely cause a temporary wait list situation for all new clients
  • If a provider is new to your particular funding source (i.e. a grant or waiver for therapy), you could be temporarily wait listed while they go through the process of securing funding, and completing any documentation the funding source may require

As you can see from the list, there are varied, and very understandable reasons why a provider may say, "We can help you, but just not right now". If a company does not have enough staff to cover your case, or is in the process of properly training or onboarding a new hire, then there will be a delay before you can access services. Being placed on a wait list is not always a bad thing, although it may feel like it is.

What many, many parents want to know is what they are supposed to be doing while on that wait list. For that and other common parent questions, please see below.

"Is there anything I can do to prevent being wait listed?" - To a degree, yes. Keep in mind that the service you are trying to access is probably in very high demand, with a a limited supply of clinicians/professionals. This is true for ABA therapy, Speech therapy, Occupational therapy, etc. Across the board, we need more qualified professionals serving Autistic populations. But, as a parent you can request parent/family training by a BCBA (this doesn't require RBT level staff), just to complete the Initial or Functional Behavioral Assessment, or ask if you can start as private pay to speed up the process. Depending on the reason for the wait list, any of these options may get things moving more quickly.

"How long will I be wait listed?" - This is the absolute wrong question to ask. I don't say that because there is something wrong with you asking. I say that because the reality is the answer will be a guess. The problem is, people drop off and get added to the wait list constantly. Add to that unforeseen challenges or road blocks, and that "2 month wait" someone promised you could easily stretch to several months long. Also asking "Well how many people are on the wait list?", is typically a question providers won't answer.

"Okay...then what should I ask instead?" - Instead of asking, try telling. Decide how long you will give this provider/company to be available to you, and inform them of your decision. For example, "Yes, please add us to the wait list but after 6 weeks we will be reaching out to other providers". This way you already have a plan B ready to go, but just in case a spot becomes available you still have plan A.

"What should I be doing with my child while we are stuck on this wait list?" - Something. Yes, that's intentionally vague. I couldn't possibly know what your child needs to do while you sit on a wait list, but I do know the absolute last thing they need to do: NOTHING. The worst mistake you can make is to be placed on a wait list, and then just go back to life as normal. Obviously, you are requesting therapy services because you need help. So still pursue ways to get help, while you are waiting for the professionals to step in. Especially with the technology options today, you could consult remotely with a BCBA, take online courses in ABA or behavior change, attend conferences to learn, join an Autism support group, etc. What you will be able to do while you are on the wait list is going to vary depending on your local area, and the resources available to you.

"How long should we remain on a wait list for treatment?" - And this is the #1 question I hear from parents/families. I don't have a specific answer for you, but instead I would emphasize the importance of treatment. Think of this way: If you arrived at a restaurant and were told there wouldn't be any tables available for 3 months, would you just sit in the waiting area and not eat for 3 months? No, right? Well, the treatment you are trying to access for your child is as critical as food and water. You do not have time to waste. If you have been idly sitting on a waiting list, not hearing from the provider, and not receiving any updates, it may be time to move on.

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