So one of the key recommendations that came out of our visit to Yale was treatment options. There are several forms of therapies out there that have shown to be effective on various levels. There are traditional therapies such as speech, occupational therapy, physical therapy, and special education. My estimation is that these treat symptoms of ASD (autism spectrum disorders) but not the autism itself. Kids on the spectrum frequently have issues in one or more of those areas - Zach has definite issues with speech which was the impetus that lead us down this path in the first place.
Other therapies more specific to ASD include TEACHH, Floortime/DIR, and ABA. I know - acronym city. I'll probably get a post in here that is all acronyms at some point. Anyhow, ABA which stands for applied behavior analysis is what Yale recommended for Zach. " Applied behavior analysis (ABA) interventions focus on teaching tasks one-on-one using the behaviorist principles of stimulus, response and reward,and on reliable measurement and objective evaluation of observed behavior." (plag'ed from Wikipedia) . I have read about all of these therapies and the plethora of others. ABA certainly appeared to make the most sense for Zach based on his current needs, and also happened to have the most scientific evidence to back up its efficacy. Their recommendation made sense and we will start down a path to getting him this therapy.
The folks at Yale went and researched the Syracuse area for ABA therapists for us, which was much appreciated. They came across the SU Parent Project at Syracuse University and we have begun an initial contact with them to see what they can offer us. We also contacted our Earlty Intervention service coordinator through the county to see what was available through the various agencies. The service coordinator didn't think that we would be able to get covered the amount of services that the folks at Yale recommended via Early Intervention. We anticipated this. And thus began our unpleasantries with our health insurance administrators.
Steve had contacted our HR department regarding getting a copy of our policy to see what was covered. We were told that we didn't have the policy that Excellus Blue Bross Blue Shield held it. Our company is "self insured". Don't let that term delude you into thinking they can tell us what is covered though. They told us to contact BCBS directly. I did that. I was told that asking to see if ABA was covered wouldn't be sufficient- they required a 5 digit procedure code (not to be confused with a diagnosis code). OK. So I google to see what is out there in terms of codes that people have used for ABA and I call BCBS again with my list of codes. After a a little research, I was told that coverage "depends" on this "other" policy. They give me access to the policy. I read it. It makes things about as clear as mud. *sigh*
So, Steve decides to once again employ the services of our HR benefits rep. That evening, Steve was unusually quiet. I thought that something the kids had done had set him off. He refused to talk to me about what was plaguing him. As bedtime approached, he finally was calm enough to disclose that our HR rep said that there would be no coverage. He was so distraught, and I totally understood why. I had to remind him that this is how the "real world" of insurance works - if you asked them, they probably would tell you a flu shot was not covered - that doesn't mean that it really isn't, you just have to find out the right way of asking. We would find a way. We will take care of this one way or another. We began to consult a family member for a child advocacy lawyer in our area just in case. I really don't want to go there.
Can you imagine what it feels like to be told a diagnosis by one of the world's recognized researchers (she is helping to write the next revision of the DSM) in developmental disorders that your child has an ASD, that he requires 25 hours of this sort of ABA therapy, that time is of the essence - and then have a bunch of people who are able to help your precious child get this treatment seem to give you nothing but bad news or roadblocks or shrugs?
BCBS covers ABA therapy in Minnesota. (Huh?) I can barely handle the winters in central NY - we are not about to move there. Another odd fact, the Department of Health of New York State recognizes and recommends this therapy as a treatment for ASD. Hmmm. What will we do? More research of course.
Let's hope the good folks at Early Intervention are going to be able to help us out. $80, 000 a year is just a little salty for us.
This all leads me to a a deeper understanding of the gifts we have been given: We are by no means rich, nor are we the smartest people in the world (although Steve is pretty damn smart if you ask me) but what do people do who don't have the resources we have to deal with these situations? I must say a prayer for them. I ask that everyone who reads this do the same.
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