Friday, 29 May 2015

Coding issues continued

I put a call into Alberta Education and had it returned promptly. The woman really heard my concerns and acknowledged that The Powers That Be still go back and forth between the two codes about which is more appropriate. She explained that if the only issue is DS with nothing else significant going on, that a 43 doesn't fit.

I was also told that I do in fact have the right to approach the school about changing the coding.
I've been emailing back and forth with P's teacher, whom I love and have great respect for.

Teachers response:

Hello Johanna,

At the classroom level we do not have any say on how a child is coded. However, I asked XXXXX (our Early Intervention Supervisor while XXXXXXX is away), and she said that Code 43 would fit for a child in a preschool or kindergarten class diagnosed with Down syndrome and a severe delay. By the time we meet in June, the therapists will have her test scores to see where she fits in terms of mild/moderate or severe delays in different areas. We also will take time to recognize Phoenix's great progress this year. XXXXX will be in attendance at the Transition Meeting for Phoenix in June, so she said that would be a good time to discuss your concerns about the coding.

I hope this is helpful.


 My response to teacher:

XXXX, thank you for responding. I understand that you do not have control over coding.

My concern is that Phoenix is being placed in this separate category simply because of her diagnosis of Down syndrome. And that somehow she is considered "more disabled" than her peers with say Cerebral Palsy, or Autism or even Fragile X not because she is actually "more disabled" or "more severe" than these children, but because of a long history of marginalizing people with DS in particular.

Trisomy 21 is a medical condition. Fragile X is a medical condition. They both have a chromosomal basis which affect all areas of their functioning and development. Why then would they have different codes? It doesn't make sense to me.

There is no doubt in my mind that Phoenix, despite all her progress will come out as "severe". I do not have an issue with severe coding. I really don't. I understand that she has significant delays in comparison to her peers. I just don't want her to be coded in such a way that is not in line with her diagnosis, and that is not the same as other children with medical/chromosomal diagnosises.

When I spoke to someone from Alberta Education I was told that in the absence of signifcant other issues that a code 43 would not be apporpriate for a child with DS (dual diagnosis of autism for example). From what I understand, the two codings come with the same amount of funding, dollar for dollar. Also, that aide support is dependent not on a code of 43, but on the specific needs of the child.

As a special educater, and as a parent with a child with DS, I strongly believe in questioning the status quo. There needs to be reasonable justification for applying a coding/label etc. I don't believe there is justification for all children with DS to be given a code 43, but more specifically, I do not believe it is a suitable code for Phoenix based on how other chromosomal conditions are classified by Alberta Education.

Please feel free to forward this on to


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