An education

This photo has nothing to do with this post, other than it captures a moment when people thought outside the box to make my son's dream of flying down a zipline reality.

This post is about education for youth with intellectual disabilities. I've just begun reading The Beyond Access Model, which outlines best practices in including students with cognitive disabilities in regular classrooms. It's based on a four-year demonstration project undertaken by the authors.

I see two issues here. One is the question of whether inclusion is a choice for high school students with intellectual disabilities, or whether the only options are segregated schools or contained (in practice, segregated) classes within a regular school. The other issue is curriculum. Should youth with intellectual disabilities work on academic skills pulled from the general curriculum -- at their level -- or should they focus solely on life skills?

Let me make it clear that I am not implying that inclusion is the best choice for every child. What I am saying is that in the year 2011, I think there should be a range of choices for youth with intellectual disabilities, and one should be inclusion with innovative supports. Not only for the "included" student's sake, but for the growth and development of all students.

I was interested in the Beyond Access Model because it's based on the idea that IQ is hard to measure and quantify, especially in children with communication and movement problems. The book instead puts forward the idea of  'presumed competence:' When we can't be 100 per cent sure where a child is cognitively, why not have the highest expectations and give them access to the general curriculum, with modifications? An important component in this model is to give youth who use voice devices age-appropriate vocabulary (instead of 'functional' words), so they have a chance of conversing with their peers. The model seems to depend on a comprehensive educational team who meet frequently to brainstorm. That's as far as I've gotten so far.

This philosophy of modifying content from the regular curriculum and inclusion stands in sharp contrast to what I have found offered in our local school board. When my son acquired the label of developmental disability at age 13, and was to move to a high school, we were given two options. One was a class for students with developmental disabilities in a windowless room in the basement of a high school. The other was a segregated school for students with mild intellectual disability (I'm still not totally clear what the distinction is). We were told the focus was life skills, but I didn't understand at the time what that meant (or perhaps I did, but I chose not to think about it).

I expected my son to continue to work on academic skills -- at his level -- especially reading and writing through use of a computer. Instead, I've found that the focus is cooking and reading of recipes, an art appreciation class, and a math program for students with developmental disabilities. On his IEP for the latter, his current level of achievement read something like: 'Ben can sort objects with 75 per cent consistency, but often rushes through his work and is disengaged.' Ben has been able to sort objects for years (when interested) so it was a surprise for me to see this as a level of achievement. When I said I didn't want my son to be pigeon-holed as someone who would do piece-meal work in the future (because what if he doesn't choose to sort or pack things?), I was told that these skills translate to other life skills, such as setting a table.

The mandate of the school is life skills, employability and social skills. I was told that the focus is the same in contained classes for students with developmental disabilities in regular high schools. It's a matter of philosophy, I was told, and the philosophy here is so far from that stated in the Beyond Access book that it's mind-boggling. We live in Toronto, a 'world-class' city.

Ben will have a psychological assessment at the end of the month. I was told I had to go this route if I wanted to reconvene his IPRC to look at other possible placements.

What would I like for my son? I would like him to improve his reading skills in a way that can be measured. "We don't have reading teachers here," I was told. I would like him to become more adept at keyboarding so that he can produce written work and better express his thoughts. I would like his interests to be used to motivate his learning (e.g. Star Wars and his desire to be a zookeeper). I would like him to understand basic math. And I would like him to continue learning about the world and current issues and anything else that relates to what typical students learn -- at a level he can manage.

I have heard about Universal Design For Learning in the U.S. It's the idea that general curriculum is presented in a variety of formats using multi-media and technology to meet different learning needs. Is this used here in Canada?

I asked on a recent school visit if Ben might be able to attend a course on reading and writing stories with students with mild intellectual disabilities. Today I was told that he would first have to have his label changed at a formal IPRC (I guess to MID). But then I thought -- these students aren't getting courses for credit, so why would it matter? Why do students with MID only get to take MID courses, and students with DD only take DD courses. Where else in the school system do you see that kind of segmentation?

And then I thought about Ben and the zipline at camp. There were lots of reasons he couldn't do it. He's too weak to climb up to the launching pad. His first year, he made it with a combination of climbing and being lifted. Last year he'd only just been released from hospital following rehab for hip surgery and was unable to walk. I remember as he went into his second week at camp, and I hadn't heard news about the zipline, I sent a message to the directors: "I realize it may not be possible because of his physical status, but is there any way Ben might be able to go on the zipline again this summer? Only if it's safe, of course!"

And the next thing you know, they made it happen. I'm not even sure how they got him up there, but they did.

A surprising thought popped into my head the other night. Perhaps he'll be better off when he's out of school. Instead of fearing the future, perhaps it will be a time of greater opportunity.