Final Determination: I Will Not Let My Child Suffer

Amy Corbett Storch
Being a Mom

paperworkMere hours after I posted a 1-minute, 8-second video equivalent of a Rocky-style fist-pump on the top of the art museum steps on my personal blog, we received a letter from our insurance company, informing us of their Final Determination re: coverage eligibility for Noah's occupational therapy.

The video was a single scene from a birthday party, in which my son is having a great time on an inflatable obstacle course activity. That single scene easily includes a good six or seven "things" that he previously could not tolerate, at all. Six or seven typical childhood "things" that we've never once been able to take for granted.

I truly believe that Noah's current state and success and behavior is directly attributable to the OT he's received over the past 12 months.

So of course, our insurance company has decided not to pay for any of it.

The rejections first started almost exactly a year ago, at the end of November 2009. Prior to that, Noah had been deemed eligible for two sessions a week ... for just the right amount of time for us to hit our out-of-network deductible. As soon as it came time for the insurance company to actually start reimbursing us for the 70 percent or whatever, they demanded "more thorough documentation" of Noah's goals and treatment plans before they'd extend the eligibility period.

Now here we are, in December 2010, still fighting for that SAME INITIAL EXTENSION. Twelve months and three appeals, and the Final Determination is the same as the first: They certainly agree that Noah's treatment is educationally necessary, but not medically necessary. Oh, and besides, there are some detractors about the effectiveness of sensory-integration-based therapy out there, so ... we're gonna side with them and declare your choice of treatment plan a bunch of ineffective quackery.

Meanwhile, we've seen just how very effective occupational therapy has been for Noah (and have no intention of yanking him off a path that's clearly working for him anytime soon). So we've appealed, over and over. We've swapped diagnoses and medical terms, stripped out the sensory goals and pushed the dyspraxia and hypotonia, and his therapists and pediatrician have probably written a damn near novel on him by now, describing his progress and goals and challenges in the coldest, most clinical language you can imagine.

Noah's always been a tough case to describe -- he's not on the Spectrum but certainly exhibits behaviors similar to say, Asperger's and PDD-NOS. More than one therapist and evaluator have described as having a "little something from all the categories, but not quite solidly fitting into a single one." But all we know is: We've found stuff that works, that he responds to, and we've seen first hand this year what happens when you pull that rug out from under him. He craters, he closes up and withdrawals, he becomes a stressed-out little ball of uncontrolled motion and tics. Everything -- from speech to attention span to anxiety levels -- suffers.

So no matter what the monthly therapy bill is, no matter what the insurance company says, I will not let my child suffer.

Our next step is to file a complaint with our state and request an independent review of the case. Basically, we'll take the company to court and make them justify their denial of a covered condition, and for telling us that the right treatment for our son is just not one they agree with, so screw you guys.

All this just to get an extension of coverage until ... oh, February 2010. Then we'll probably have to start the whole mess all over again, once we hit the deductible. Again.

The good news -- truly the light at the end of this very boring, very paperwork-littered tunnel -- is that a couple weeks ago a sign appeared in the waiting room of Noah's therapy office. The office was now considered in-network for a certain different insurance company. I didn't think much of it at the time, but then just last week my husband's company announced that they would ditching our current provider (in no small part because of our experiences, which he made sure to tell the HR department about in painful detail every. time.) ... and going with Insurance Company B, the in-network one, which (on paper, anyway) promises comprehensive OT benefits for motor-planning disorders and the like.

So. Fingers crossed for 2011. We're not giving up. Sorry, Insurance Companies, but you're not getting rid of us very easily.


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