Last July I applied for a grant that would be the first bit of assistance Vivian has ever received.  In order to prove eligibility, I had to get a letter from her doctor stating how she was eligible as a child with developmental disabilities.  I called the agency to clarify and I was asked if she had Down Syndrome.  No.  Does she have Cerebal Palsy?  No.  Does she have Autism?  No.  I was told she may not be eligible because she doesn’t fit into one of those diagnoses.  I then went on to explain more about Vivian and was told that if the letter contained the diagnosis that she had a permanent intellectual disability, then she would meet the criteria.  Let me tell you how great that felt asking her doctor to include that in her letter.  She ended up getting the grant (after being randomly selected and me having to appeal, based on an employee’s error).

In September we scheduled a neuropsychological test for Vivian for next Thursday.  We had seen a Developmental Pediatrician at Kennedy Krieger Institute and this test was referred by her.  The purpose is to see where she truly lies in terms of her cognitive ability.  This will help give us a baseline in terms of her myelination progression and how she may progress in the future, including whether we should put her in general or special education, and later go for a diploma or certificate.

About two weeks ago I received notification that the test isn’t covered because it’s not at our health insurance’s facility, so we would have to pay 100% out of pocket.  This afternoon I mustered up some motivation and energy to call the insurance company to start an appeal process.  I explained to the customer care representative the situation and she was careful to ask what the intent of the results of this test were.  I explained and then was told that if we were testing for a specific condition, such as Autism, then it would be covered.  Because it is being used as an IQ test, it is not covered.  I hung up on her.  I couldn’t help it.

Vivian doesn’t fit into a typical diagnosis.  You can’t label her.  Unfortunately this means she may miss out on some opportunities that are presented to her, but I will continue to fight.  Tomorrow I will call and see if it can be covered under our medical benefit instead of mental health, because she does have a documented medical condition.  I’m just so frustrated that I have to continue to validate her unique condition, but she’s worth it.

More to come – I have a lot to catch up on.

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