Real Life Stories

Autism Spectrum Disorders: Making Sure Families Get What They Need

By Michelle Jarvis
Program Manager, Family Involvement, AMCHP

In this day of technology, it can be a real challenge to sift through the seemingly endless stream of information, opinions and efficacy of treatments for autism spectrum disorders (ASD). Since the information and opinions can’t be filtered, it is incredibly important that families are guided to treatments that are evidence-based and considered ‘best practice’ by reputable sources.

One of the most commonly known treatments for ASD is applied behavioral analysis (ABA). This is a data-driven methodology that has shown to be very effective in teaching skills and modifying behaviors for many individuals with ASD, and is typically a recommended intervention. Despite this, a family often times has significant struggles in securing this treatment. To learn more about ABA, please visit Autism Speaks.

There are several factors that can be identified in the struggle to secure ABA services. For one, there is some dispute as to whether ABA therapy is considered educational and therefore the responsibility of the school to provide, or medical and therefore the responsibility of the family or medical insurance to provide. Another struggle is the denial of coverage for ABA by insurance providers based on the claim that ABA is ‘habilitative’ rather than ‘rehabilitative.’ To learn more about habilitation versus rehabilitation, please click here.

Personally, I can identify with these struggles. When my son was young and early intensive services were most critical, ABA therapy was recommended repeatedly. However, his school denied providing these services claiming they were not educational therapies. When turning to my private insurance, ABA also was denied. My son received the recommended ABA therapy, but at a significant personal cost. As with many children, this intervention had a tremendous positive impact on him. He learned many skills through ABA therapy and was better able to manage his behavior. I went through several seminar classes to become trained in the ABA methodology in an effort to consistently support him and help him generalize skills. For a period of time, I even worked as his aide in his classroom. Eventually, we moved and his new school recognized the importance of ABA services and was agreeable to providing both a home-based program, as well as consultation to the school team and training to the new aide.

The ABA services my son received were critical in his development. I know he would not be who he is, and where he is today without them. Due to this, while I was in a leadership position in New Hampshire, I worked with many key stakeholders in the state to draft and pass insurance legislation for fair and equal insurance coverage for individuals with ASD. We were successful in getting this legislation passed into law so that other families can access ABA therapies through their private insurance, without personal financial hardship. The law in New Hampshire is called Connor’s Law, after my son. Connor’s Law states that insurance providers can not deny coverage based on a therapy being ‘habilitative.’ Under Connor’s Law, ABA therapy is capped at $36,000 per year for children from birth through 12 years and at $27,000 per year for individuals 13-21 years. For more information on Connor’s Law, please click here.