Wednesday, April 22, 2009

Qualifying Diagnoses

Back in Feb, my life (my daughter's) was turned upside down. At the beginning of the school year, she was evaluated for a behavior interventionist aide at school and was found to be eligible. In February, a new boy was enrolled in class and his aide was struggling with his behaviors.

Without any warning, Kanani's aide was reassigned to the new boy and she was left without assistance. I asked the special ed director about it and was told that she was 'better' and didn't need an aide anymore. After much fishing for information, questioning staff at the school, I sought the advice of a professional. We wrote a letter to the school and I hand delivered it to the principal and the special educaton director. It was a nice letter. As a result, Kanani's aide was reassigned and the school assured us that our aide would continue to work with her through the end of the year.

Since then, our IBI aide's supervisor asked us to have Kanani evaluated by a neuropsych to see if she could qualify for IBI over the summer. My first thought was- this agency is trying to fill their summer programs and I can see the dollar signs in their eyes. Ironic since just a number of weeks before, they tried to tell me that Kanani didn't need behavior intervention.

So last week, I reluctantly accompanied Kanani to her appointment where she was given an IQ test. The doctor asked why I was having it done and I told him that we were seeing if she would qualify for behavior intervention over the summer. He made a comment to me about how he thought that her diagnosis of DiGeorge syndrome automatically qualified her. I told him I didn't know...

Ok so NOW, THIS WEEK, we are scrambling a bit because Kanani's aide has given notice. It seems that the school AND the contract agency (who provides the staff to work with the special needs kids) don't want to change her services and they want Kanani to continue with behavior intervention.

This morning, I called one of the supervisors to discuss what the plan was. After a long conversation, I had to ask him and repeat back to him what he had just finished telling me. hhmmmm. As it turns out, Kanani's diagnosis of DiGeorge syndrome is a "qualifying diagnosis" which basically means she is automatically eligible for behavior intervention. The neuropsych knows his stuff.

Apparently, everyone knew this (except me) and over the past year, used it to THEIR advantage in trying to accommodate other more demanding families, staffing limitations, and unhappy employees. I find it a litte bit irritating to think that 1) I wouldn't know this information; 2) they didn't tell me before; and 3) the notion of "qualifying diagnosis" is used only when advantageous. Whatever.

I still don't know what is going to happen... if she is going to be in a behavior intervention program over the summer. More to come soon...


Melissa said...

Sometimes you really have to wonder what they are doing. We have had to ask for special education classrooms for our son with autism. We didnt' have any problem getting what we wanted in the end, but they sure weren't forthcoming about his options. They always wanted to do easiest and less costly idea of mainstreaming him. Next week is our next big meeting to discuss what is going to happen next year. I know they will push to mainstream him again, and he is not ready. But today I found out from a social worker that works with my youngest son of three different options. It will be interesting to see what they tell us before we have our say. I wish they could see how much it hurts the kids when they do this. I wish you the best of luck in your fight with the schools.

Luke and Erin said...

Oh, how frustrating! Can they not see the more important picture? Do they really care about what it does to a child? No, “they” (meaning the people that never even talk to the child) do not deal with what is really going on. Therefore, making it “someone” else’s problem! Oh, it just makes me crazy! You are inspirational in they way you handle things. I think I would have turned into a crazy mad woman, yelling at everyone about it. I really hope that when the time comes for Bree to be in school I have grown enough to not be so angry and just do what I need to do because no one else can.
I wish you and your daughter the very best.