Allowing Choice in Autism Treatment

Dear Parents and Professionals,

We Have A Problem:

Federal legislators are in the process of determining how to define health insurance benefits for people with autism.  The problem is that the ABA folks are working hard to market their approach, misleadingly, as the only “evidence-based approach” available.  If parents and professionals do not speak up and share their concerns by January 31, 2012, the legislature could define ABA as the only behavioral intervention covered by insurance for autism treatment.  This means that countless children who benefit from developmental and relationship based approaches such as the DIR Floortime Model and the RDI Model (Relationship Development Intervention) would not be eligible to receive these services through their insurance.  It means that a 1 size fits all ABA approach would be handed down to your child/client instead.  

What We Believe:

We believe that PARENTS SHOULD HAVE A CHOICE in their child’s treatment whether it is ABA, DIR Floortime, or RDI.  Parents know their child’s unique needs and they should be empowered to make informed and educated choices for their child’s treatment.  We also believe that children do not respond equally to each approach.  We have all known children who struggled through an ABA approach and thrived with a DIR Floortime or RDI approach.  People with autism are unique individuals with unique needs.  They do not have a voice; therefore we need to be their voice! And time is running out.

What We Can DO:

We are asking that you be proactive in writing a letter to the U.S. Department of Health and Human Services by sending an email to:  EssentialHealthBenefits@cms.hhs.gov in order to let your voice and the voice of your child/client with autism be heard.  Let them know that Parents Should Have a Choice in the Behavioral Treatment their Child with Autism Receives.  The deadline is January 31, 2012.


Letter Example (Parent):  Please feel free alter and elaborate with your own perspective/story.

As a parent of a child with autism, I have tried several forms of reputable behavioral intervention approaches in order to find the best fit for my child and family.  While ABA has been a helpful treatment for some children with ASD, it was not the best fit for my child or family.  After 2 years of intensive ABA, with little results, my child thrived with a developmental-relationship based treatment approach called RDI (Relationship Development Intervention).  My child used to scream and tantrum for hours and he couldn’t communicate his needs, and RDI helped our family learn how to create an environment for my child that was essential in supporting him in maintaining a calm and regulated state.  This was a Godsend in and of itself.  However, RDI therapy didn’t stop there.  My child continued to make progress with this approach.  RDI instrumental in teaching my child joint attention and social engagement as well as how to communicate in meaningful ways with others.  In addition, my child’s cognitive skills developed to the point that he was able to problem solve and learn abstract ways of thinking.  My child has grown cognitively, socially, and emotionally and his behavior has drastically improved thanks to RDI.

I am concerned that future insurance protocol will limit my choice as a parent to make an educated and informed decision on the best treatment for my child.  ABA is not a good fit for my child or family and I am urging you to authorize other evidence-based behavioral interventions such as RDI (Relationship Development Intervention) as eligible interventions under the new insurance guidelines.   

Thank you,

Letter Example (Professional): Please feel free alter and elaborate with your own perspective/story.

I am a supervisor and behavior consultant at Verdugo Hills Autism Project.  I have a Masters degree in Educational Psychology and Counseling and have worked with the autism population, ages 2 to 19 years, in my community, for 10 years.   As a professional in the field of autism intervention, I want to strongly urge you not to use a 1 size fits all cookie cutter approach to autism treatment under the new insurance guidelines.  Autism is a spectrum disorder and no two children are alike.  It is essential when providing intervention to children or adults with autism that an individualized approach be utilized in which the treatment approach, whether it be ABA, RDI or DIR-Floortime be provided based on the person with autism’s response to treatment.  I have worked with hundreds of people affected with autism and I have known many who did not respond to the ABA model, yet thrived on the RDI model of intervention.  I feel strongly that PARENTS SHOULD HAVE A CHOICE IN THE TREATMENT USED FOR THEIR CHILD.  There should not be an ABA only behavior treatment model as this model is often not a good fit for the child or their family.

Thank you,

Remember the deadline is this Tuesday, Jan 31.  Please write today.  Thank you.

(Written by Jackie Zaldua, MA)

Another wonderful article about Declarative Communication

I can not say enough about the power of declarative communication.  It fundamentally changes your relationship with an individual on the autism spectrum. 

I will never forget literally watching the weight pressure for interaction and "rightness" leave the room when I began focusing on declarative communication with a student of mine so many years ago.  It was if a weight had been lifted off our relationship.  It was no longer about me getting.  It was about us giving opportunities.  A change that has led to life long advances.

http://www.rdiconnect.com/blogs/rdi-culture/archive/2012/01/15/the-critical-importance-of-using-declarative-language-with-children-on-the-autism-spectrum-by-linda-murphy.aspx

Time Outs are Time Ins

I recently read this story on an Autism Forum, and loved it!

There were two men chopping down trees. One man would go and take a break every 30 minutes. The other man kept working and working and hardly ever took a break. As the hours wore on, who had chopped down more trees?

The man who took a break every 30 minutes!

The other man was angry and frustrated. "I work so much harder than him. I never take a break." he thought. Finally he asked the first man, "What do you do when you take a break?"

"I sharpen my axe" said the first man.

Breaks can feel like giving up, or taking time away from "treatment".  However, in reality, they are time INs!

Regulation Regulation Regulation

A great article on the power of coregulation.

http://www.squag.com/789