Tuesday, 26 May 2015

Why do I even care?

I have a bee in my bonnet about special education coding.

This refers to Alberta coding criteria. In my daughters school board students with DS are given a code 43 - Severe Multiple disability, where autism and FASD get a code 44 - Severe Medical disability. In a neighbouring school board students are given a code 44.

The funding dollars are the same. It's just a label.

I feel that DS is a medical disability. It is a medical diagnosis and a medical condition - Trisomy 21.
All the disabilities and challenges are a result of the extra 21st chromosome; low muscle tone causes physical delays, speech delays, processing delays.

My feeling is that by being put into the MD category, it is easier to write off our kids, or slide them into an ID category/programming/class. I don't want it. Also, at 5 there is no empirical proof/data (ie IQ test) to demonstrate a cognitive disability at this time.

Just assuming that there is a cognitive disability because duh, Down syndrome, doesn't fly with me. You want to diagnose a learning disability? You need proof. You want to diagnose Autism? You need proof. And if you are going to label my kid as having a cognitive disability you better have some proof other than the presence of an extra chromosome.

 If there is no proof for it, I don't want it applied.

It says "ECS children diagnosed with DS in the most severe cases should be reported under code 43. Most severe cases. What does that even mean? How is that an appropriate code for Phoenix when she is functioning very well in her classroom?

Here are some other examples of conditions that students have which fall into the Severe Medical category:

Fetal Alcohol Spectrum Disorder
Cerebral Palsy
Fragile X
Brain Injury

I think my issue with this is that it is another example of how kids with DS are placed in their own category because of their diagnosis and other peoples preconceived ideas about Down syndrome.

If you look closely at the criteria for code 43, DS doesn't even fit. It says "Two or more non-associated moderate to severe cognitive and/or physical disabilities. Non associated.

ALL of Phoenix's delays are associated with the presence of her extra chromosome. They are ALL associated.

Down syndrome fits quite nicely into the code 44 criteria. She has a medical diagnosis (Trisomy 21). This medical condition creates a significant impact on her ability to function in the school environment and she requires extensive adult assistance and modification to the learning environment in order to benefit from schooling.

So why do I care? I care because this coding feels like the same old "Because it's what we've always done" justification for putting kids like mine in a corner. For marginalizing them and for writing them off.

If my child has a medical condition, what is the justification of placing her in a separate category, when her "functioning level" is similar or better than other kids with other medical diagnoses such as autism, cerebral palsy, brain injury or even other genetic conditions like Fragile X?

I don't get it, and frankly, I won't have it.


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