Who did you have to advocate with for ABA services? Was it the school or insurance?
I dealt with the local regional center. The Local Regional Center coordinates the special need services in my school district.
What was your daughters classroom like?
My daughter has been attending a typical Pre-K classroom for 3 hours each day with a 1:1 aide that our district hired from an ABA company on my request.
Was the school district open to providing the ABA therapy upon request?
No. I asked that the regional center fund an additional 2-3 hours of in home ABA in the afternoons and they initially refused.
Did you ask the reason for refusal, and if so, what did they say?
Yes. They said ABA therapy was inappropriate for a child with Rett Syndrome. They also said things like: She has to be in an Autism Class for this service and Rett is not an ASD (autism spectrum disorder)
What did you do next to resolve the issue?
I requested a meeting with the Autism Board who makes the decision and an appointment was granted.
What Happened at the Meeting?
When meeting with the 7 members of the Board last week, I laid out my strategy. I said I was not there to argue appropriateness of any therapy for a diagnosis. I was there to argue that ABA therapy was appropriate for my daughter.
I also said I was not the only one who strongly believed this. I presented letters of support from my daughter's treating physician (Director of our local Rett clinic), DAN doctor/Homeopath, ABA company providing the aide in school and also Judy L (my daughter's case manager and AAC/AT expert). Each person said they were prescribing 25-40 hours of ABA therapy per week, consistent with ASD intervention.
I then explained that during school, my daughter's academic goals are: socialization, communication and interaction. Her goals for in home therapy are: Social & Functional Communication and Adaptive. There is no time to work on the latter goals during her three hours in school.
Specifically, Lilia's expert team and I would like to see her learn to navigate her new Tango communication device independently so she can communicate her desires and have her needs met. I explained that when she is frustrated from inability to independently communicate, she exhibits behaviors (I had to use Autism speak, even though this made me cringe!). These behaviors include teeth grinding, tugging on her hair with her right hand and other signs of frustration.
Learning to navigate a new communication device requires lots of repetition, time and learning. Additionally, we would like her to practice interaction via reciprocal turn taking. Again,, this requires practice and repetition. We'd like to see her strengthen independent learning skills to fade out adult support (again, being able to communicate through independent Tango navigation). There were more goals, but you get the jist.
What was the result of this meeting?
After a 20 minute presentation, I was given approval for 10 hours of in home ABA therapy with the same company that goes to school with my daughter. The regional center will also be providing additional time for preparation, set up and writing goals.
What do you feel was the most important advocacy tool you used?
I'm not sure if this was a good or bad comment, but the members of the board said they had never met anyone like me. I decided to take that as a compliment and said "thank you" and smiled. The point is not to give up. I have always won everything in appeal. Figure out their objection and remove it. That's my strategy.
As this interview concludes it is important to note that Vera did many important advocacy steps:
She called another meeting, gathered important information including medical reports and letters of support, provided reasons why this service was appropriate for HER daughter specifically, outlined the goals that they wanted to work on. She even tied her outcomes to socialization, something her daughter was not currently receiving services for.
Great Job Vera!!!
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