Thursday, January 6, 2011

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.


Hey Louise,

As you know, Owen's disabilities were markedly more severe than Ben's - but I came to the same conclusion about school. We had positive experiences in Markham where Owen was in a contained class within a regular public school... but when we moved to Toronto things were very different. The segregated school provided little more than babysitting. Fake school with pretend activities in which there was little actual engagement or connection. I wasn't even concerned about academics - just real, meaningful experiences. After his prolonged illness, I removed him from school and never looked back! Life is too short for nonsense.

Glad Jennifer was here to comment. Reading this I got the impression that you might be able to do a better job outside the school.
It seems like the board is not really offering you any options. Her experience in the TDSB sounds like the way the program was run at my old school until a friend of mine took it over and was determined to make a real difference for the kids in that program. She remains one of the people I most admire.
Everything you want is possible, but having great people willing to do the work, like the group at Ben's camp, is lucky.
We should not have to be lucky to get a good education for our kids.
I hope you can find a good placement for Ben

I loved your blog. Your feelings mirror my own. Why do schools quit challenging our children when they get to high school? I wish you the best of luck in making changes. Personally, I think until we portray people with disabilities in a more favorable light via the media and relinquish the government's control of our lives, we can expect nothing better.

Thanks everyone for your comments!

Jennifer, can you explain to us the process of taking Owen out of school? Did the board provide any schooling in the home? I would love to hear more!

I think Ben and you are being given too-limited choices in your school district also. Basements and separate campuses are anachronistic as a norm but SOME students do learn better in self-contained (non-inclusive) settings.

Here in the US despite volumes of federal and state regulation the implementation of special education is down to the team that makes decisions for each child. I encourage parents who have been unhappy with IEP meetings to have separate conversations with each team member BEFORE the meeting to share information and intentions, to form a relationship with that person in order to garner their support for your stance.

I also encourage separating placement decisions from goals and objectives. Decide which you might be able to influence and go there first. Influencing one of each of these can help the other follow suit.

"the focus is cooking and reading of recipes, an art appreciation class, and a math program for students with developmental disabilities"

You say that as if it is bad, but really the program is not what you want for Ben in school. Are you teaching him to cook and participate in laundry at home? At 13 those are appropriate skills for a child to learn.

Students who are physically unable to complete cooking and laundry need to learn to direct others in those activities if they are ever to achieve any level of independence. In order to direct someone else, the person needs to understand the process of cooking or cleaning clothes - that it leads to food and a feeling of freshness.

Don't underestimate the learning value of cooking for bridging a child into better reading skills. Cooking is a method for teaching many things. (I have many posts on cooking and laundry linked in the middle column on my blog.)

I don't know how close Ben is to showing measurable reading skills. I have seen many teens for whom reading is the intellectual equivalent to the physical task of flying a zipline. I have never seen a school being willing to give the constant attention of 5 people to teach a child to read.

If Ben attends the program for children with mild intellectual disabilities and then does not learn to read - what will you do? Will you accuse them of 'babysitting' as Valerie did? I completely disagree with Valerie that the media holds the answer to improving the lives of people with disabilities. 'Improvement' is born out with the interaction between each and every child's parent and the people who endeavor to serve them through education, therapy and medical care.

You voice valid complaints against your school district for limiting the educational opportunities for Ben. I hope you have success in convincing them to broaden their vision for him and other children like him.

Barbara Boucher, PT, PhD, OT

Hi Barbara -- Thanks so much for your message.

Ben is 16 now, but at 13 was reading at a Grade 2/3 level, because then he was in a deaf/HH program where they tested reading. They don't test reading in his current program, so they have no idea if the kids are making progress or not. They simply have them do 20 minutes of silent reading a day.

No, Ben isn't actively cooking at home (I did get him to do one of the recipes he did at school). I do see value to it, but just not as the prime focus of school.

Thank you for your feedback. I will keep everyone posted on where we go from here.

Thank you so much for this post. I relate well to so much of it. It's both comforting and disheartening to know our family is not alone.

My daughter was fully included all through elementary and middle school, where she did beautifully. She is now is a self-contained high school program (long story). Her math performance has "dropped" 4 years' worth in the 4 months she's been in attendance. I'm just sick. She seems to have thrown in the towel.

But then, she doesn't see herself as fitting in the classroom she's in.

My daughter's brain, at whatever untestable level, is her strongest asset. She believes she should be learning where her mind will be challenged.

I also have to question the wisdom of segregating non-verbal children in a group. How are they to learn to communicate--not just expressively, but receptively as well--when they are not around talk? How do they learn nuance when the only speech they hear are direct instructions?

At least this classroom has windows.

You are kind to allow my input here, Louise. My habit is to dissect a situation in order to find some solution or resolution. Ben's ability to read at a 2nd or 3rd grade level is a measure I would use to push for more academic opportunity.

Honestly, I have no reference for a situation where 'they don't test reading' - an unimaginable response to me. Here evaluation is not dictated by program. Again, I hope you have some success in pressing the school district toward more academic assessments for Ben. I'm also disheartened for Rose-Marie's daughter. A demonstration of regression is strong evidence for reconsideration of placement.



I spoke with a mother of a 30-something with Down syndrome the other day, and she happened to mention that life was so much better and less stressful once her son was out of school. He has had a job for 15 years now. He lives nearby, but they only see each other a few times a week because he's so independent. For her, getting through the educational loopholes was much harder than "real" life after school. I know it isn't true for everyone, and I only hope that there is a turn for the better--that you are able to find school administrators who can really SEE Ben and not just a diagnosis written on a report card. But there's hope for after school too...

Amy Julia

"Today I was told that he would first have to have his label changed"

Ah! The LABEL. (snort) Homeschooling is a lot of work, but has the potential to be so much more straightforward and flexible, creating a curriculum and teaching methods in response to an individual's strengths and interests. Learning can and should be a joy and a turn-on. Why is this always forgotten?

Boy can I relate to this post and my son is only 8. We've already had to re-do his psych assessment to revisit the IPRC since his original SERT Teacher failed to "label" him correctly and then refused to change it even when she was presented with the original psych assessment done prior to his entrance to JK. We complied and finally got him listed as Multiple Exceptionalities. This hasn't changed things much at all though. We are still fighting for proper curriculum because we believe that as he is still so young and is showing signs of retaining information taught to him repetitively that we should jump all over that now. The school however, is just pushing him through, in our opinion. How do you deal with this? They are not sure how to help him and my husband and I both believe that instead of learning social studies and science (which I do believe are important) that they should, for the time being, push the reading and math which to me are more valuable life skills for him to have. Our idea is that we should reinforce the skills he is currently beginning to acquire and then worry about all the other stuff. Once his reading is acceptable we can do religion class or social studies or art. We love that they have included him in his classroom on a social level so well but his friends are not going to be the ones to help in in the long run. What have those of you with older children done? We want to do what is best for him and we have been seriously considering sending him to a private school geared towards special needs education but we are not sure if this is the best solution.

Excellent thought provoking article that rings true in many parts of Ontario. An Attitude of openmindness, creativity, and possibilities is essential for student success in transitioning to the adult world. Life skills need to be learned at both home and school especially for those students who benefit from repetition to engrain those skills. I like the comment that if the student can not themself do the skill then teaching them to request/direct their needs is essential. Love all the comments as I reflect on my ongoing planning and stress in guiding my two young adults with intellectual delay through the high school and beyond. Keeping in mind that the beyond may have 'no vacancey' and the parent continues to stress about directing and guiding a life towards independence where those supports at the school level have dissappeared. God bless all these parens who care and push for what is best for their child, even when the choices are confusing and tangled.

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