I've talked in the past about not accepting an insurance denial, but today was a new experience in the world of insurance appeals for me. Teddy's physical therapist submitted a request for 5 visits, one a month, back in November 2016. In January 2017, his state coverage (which is his secondary insurance) finally decided to deny the request.
I filed a letter to appeal that decision within a day of receiving the denial. A couple weeks later, I learned the next step in the process would be a hearing with an Administrative Law Judge (ALJ). That threw me for a loop because I had expected some sort of record review along the lines of previous appeals.
Fortunately, my requests for assistance through the Congenital Disorders of Glycosylation (CDG) Facebook group and PIGN Facebook group were met with an immediate positive response. A few people provided reference papers and other documentation to support the medical necessity of physical therapy for similar diagnoses. A mom whose two sons have a similar diagnosis to Teddy promptly connected me with her friend, who has extensive background within insurance companies. This friend of a friend, neither of whom I've ever met, spent a half hour on the phone with me walking through what I needed to do to prepare. Another mom whose daughter has the same diagnosis as Teddy wrote a thorough patient/parent testimonial regarding the medical necessity and benefits of physical therapy for her child.
Of course, this appeal process also required me spending nearly 1.5 hours on the phone on hold with various doctor's offices and Medicaid itself to try to request different documentation ... which I never really received. In fact, I spent nearly an hour on the phone requesting something from Medicaid only to receive a useless 1-page sheet that wasn't anything along the lines of what I requested.
Then last week I received Medicaid's position statement, detailing why PT was denied. Apparently the denial wasn't based on the fact that PT wasn't medically necessary as much as the fact that it's a duplicative service because he receives physical therapy in the school setting. In my mind, that weakened the really strong argument I had prepared about strictly the medical necessity of the service. I spent the remainder of last week on my runs (which I should be doing a run right now instead of rambling here) plotting my arguments, compiling my potential exhibits and worrying about the outcome.
And then I had two sick children this week, with Teddy home from school every day. That pulled my attention from the appeal somewhat but also eliminated other time I had planned to review and prepare.
Today was the hearing, which gave me a sense of deja vu. In my life before kids, I attended many unemployment hearings in my role as HR Director. The format of this hearing was identical to those hearings. Who knew all those hearings would serve as practice for this?
We'll know within the next month whether the denial is reversed. So, if it is reversed, does that mean he gets 5 PT visits in 1.5 months since it's taking 3.5 months to go through this process?
This is our family's journey with the rare PIGN genetic disorder Multiple Congenital Anomalies-Hypotonia-Seizures Syndrome 1. When our son was diagnosed in November 2015, we were told he was the 15th documented case in the world. We've discovered more affected individuals since, but it's still an extremely rare and unknown condition since its discovery in 2011. Our hope is to create awareness of the disorder and foster a sense of community among those affected by the disorder.
Thursday, March 2, 2017
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