5 Important Reasons to Adopt Parent Implemented Models (Dr. Rick’s blog)
Richard Solomon, MD
July 2016 • Volume 02
How would you feel if you knew that your child with autism needed intensive intervention as soon as possible and then you were told that you had to wait for months or even years before you could get services?
I want to talk about the tens of thousands of desperate parents whose children with autism spectrum disorders (ASD) are on waitlists for services all over the United States. I may have a public policy solution.
Whenever I go to a state to give a talk on autism, autism interventions, and/or the PLAY Project, I always ask about state services. How they are organized? Who pays? How well served are the children with autism and their families? In state after state (and also in country after country) the news has not been good. I hear heartbreaking stories from parents and professionals who say: “We have insurance laws that pay for Applied Behavior Analysis (ABA) treatment – traditional autism therapy – but we still can’t get services because of wait lists.”
Recently an article in the prestigious Journal of the American Medical Association (JAMA) confirmed what I hear at the grassroots level. This article examined the impact of the insurance laws that require ABA treatment of autism spectrum disorders and found that “treatment prevalence of ASD was much lower than community prevalence estimates.” In other words, “treatment prevalence” (how many children were being treated) was much lower than “community prevalence” (the number of children with ASD in the community).
In short, there are thousands of children waiting for ABA services throughout the country!
Why is this? Two reasons. First, ABA services — the only treatment for ASD paid for by insurance in most states — are time intensive, very expensive (between $40,000-$50,000 per child per year!) and hard to implement and administer. ABA is delivered by professionals, not families. I was the medical director of an ABA program for 10 years and I know how hard it is to maintain a quality program. Importantly, ABA programs typically serve 10-30 children at a time. Even “big” programs only serve 50-70 children at a time. Simply put, ABA can’t keep up with the demand.
The second reason there are wait lists is because the autism insurance mandated laws have loopholes and limitations on who they can service. For example, the laws only cover insurance companies that have their headquarters in the state. If your insurance company headquarters are in Indiana and you live in Michigan, you are out of luck. Also, the insurance laws may restrict where you can go for a diagnosis, thus bottlenecking access to services.
It is bad public policy to have only one type of official treatment for autism covered by limited insurance. It is bad public policy to focus only on professional services that do not also give a leading role to families, especially when there is strong evidence that they can be effective in helping their own children.
So, I have a modest public policy proposal. I call it “Don’t Wait! Participate!”
Rather than making families wait for ABA services on long waiting lists, let’s offer Parent Implemented (PI) models that help parents get started with intensive intervention right away.
Here are 5 important reasons to adopt PI models.
You’re asking yourself: “So why aren’t Parent Implemented models being used all over the country? It makes so much sense. It would be so much better than having children with ASD waitlists for ABA. Why isn’t it happening?”
Actually it is happening — slowly. Until recently, ABA was the only well-proven therapy. In the last 5 years, research on PI models has shown how effective they can be, especially for the youngest children. Until recently, the state laws required ABA specifically, but new federal laws allow any evidence based programs to be used. Until recently, autism was not considered a medical condition. Now these new federals laws recognize autism as a medical condition that all insurance companies must pay for.
Parent Implemented models are an idea whose time has come.
Call your insurance company. Call your state legislator. Call your governor. Tell them: I don’t want to wait. I want to participate!
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