An update

The appeal hearing went well today. The hearing officer was a very nice, down to earth and intelligent woman who let us know at the end of the hearing that she would overturn the decision based on the reasons given. But this doesn't mean that Sam gets the services. All this means is that the basis of their denial was found to be false but they could still potentially find other reasons to deny the services.

This particular CAP program is intended to serve children with a medical diagnosis as opposed to a behavioral or developmental diagnosis. The basis of their argument was that Sam had a primary diagnosis of "mental retardation." Yeah, I know, some people haven't evolved in their nomenclature like the rest of us. But nowhere in any of the records that I sent them did it indicate anything but a primary diagnosis of Joubert Syndrome which is a brain malformation, thus a medical diagnosis. So we had to go in there and show that, despite the fact that Sam may be cognitively impaired (though he's never been tested because you try administering an IQ test to a child who is functionally blind, ataxic, hypotonic and cannot communicate due to his, oh, I don't know... SEVERELY MALFORMED BRAIN!), his primary diagnosis is still a medical one.

Now go back up and re-read my description about the hearing officer because as much as I would like to write the same about the nurse who was responsible for the original denial... well, I just can't. I had had the ill-fortune of conversing with her over the phone when we first received the denial back in November. And she was at the hearing today. She began the meeting first by asking the hearing officer if the children's presence would cause problems. We had brought Sam thinking that they might actually want to meet the child about which they're making the decision. We also brought Clara just 'cause she's so cute. Bonus points, you know? Fortunately, the hearing officer seemed to really like kids, had no problem with their presence and told the nurse as much.

So now we wait. And if we are denied again then Disability Rights North Carolina, a non-profit organization in Raleigh, has already told us they will send an attorney with us to court to fight it. But I really don't want to have to do that.