Insurance coverage for autism: not always a happy story

Parents of children with autism often worry whether their son or daughter is getting the right treatment, from the right provider, at the right time. Sometimes we wonder whether anyone cares.

Recently I experienced two wildly different approaches to customer service. Two months ago I made an appointment for Adam, my son with PDD-NOS, to have a central auditory processing disorder evaluation. This was one of those appointments I was actually looking forward to. I like telling “Adam’s story” when I know it could produce valuable outcomes. I don’t like telling Adam’s story when I sense that he won’t be eligible or that my time is being wasted. Maybe I’m still grieving that I never got to Italy (see my Welcoming my son to Holland post).

I don’t know. I just don’t enjoy telling the story unless there’s a real chance of a favorable outcome.

We arrived 15 minutes early to an outpatient clinic. Kids with significant physical disabilities and behavioral challenges were also being served there. Adam doesn’t think of himself as having a disability. Both of us sat in the waiting room, observing his peers, counting our blessings. The truth is, though, we are them. We need significant supports. Adam is a child with multiple concerns whose treatment is complex. As a parent and a case manager, I’m challenged every day with finding the right provider — one who accepts referrals and who takes our insurance. In this economy, I don’t have several thousand dollars to lay out. I appreciate the cause (Adam’s future), but the money just isn’t there.

So imagine my reaction when, five minutes into the registration process, the clerk tells me our insurance doesn’t cover the evaluation — $950. You’ve got to be joking. Why did they wait until registration to tell me this?

Crying, I took Adam’s hand and walked out. Through my tears, I tried to explain to this innocent 12-year-old what medical insurance coverage meant, and why there were problems. All he wanted to know was, “How come everyone else can listen to the teacher and I can’t?”

I drove away, still sobbing. then I remembered. I left the prescription at the desk. I returned. Wearing my I’m the mother, I’m the advocate, I’m the case manager and I’m mad as hell and I’m not going to take it anymore hat, I learned that I could pay half-price if I paid that day. “You should negotiate with your insurance company afterwards.” The outpatient supervisor made me feel like she really cared that Adam got the evaluation he needed.

What I heard from this encounter was, “We will do whatever is possible to have this happen today. Adam needs the evaluation, he’s here, the therapist is here, how can we make this happen?” They made it happen.

The next day I had a conversation with a representative of an agency overseeing Adam’s behavioral supports and progress. Adam needs a specialized behavioral therapist, and I have talked (read “told Adam’s story”) to over 20 therapists in the past few months with no success. Recently the case manager provided me with two referrals, assuring me that these referrals were accepting new patients. And that they took my insurance.

I contacted one months ago. She never called back. I assume that means, “uninterested, unable, unmoved by Adam’s story.” I did get through to the other recommended therapist. Despite what the agency said, this second one will not take our insurance.

Like I said at the beginning of this blog post, those of us who are parents of children with autism worry whether our kids are getting the right treatment, from the right provider, at the right time. With all these insurance and service issues, though, we’re left to worry whether our children will be able to get any treatment at all.


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