Tuesday, August 3, 2010

Thoughts on Inclusion

Two recent articles in the New York Times caught my attention, and have given me lots to think about. I'd love to hear what you think also.

Most recently, my home town ("adopted" in our retirement years) - Madison, Wisconsin - was featured as "A School District That Takes the Isolation Out of Autism" - 8/01/10. I don't really have anything to do with the school system at the present time, but I do know one of the families included in the story and I am very proud to support the Madison Public Schools in their efforts. (That includes paying our taxes willingly, high as they might be!)

I happen to be a big believer in the value of full inclusion, but always with the caveat that it will only be successful if it is done correctly. And along with the theme of my blog, I do feel we've made many mistakes along the way. Hopefully, Madison and other districts have learned and are doing all they can to do it right, in spite of all the obstacles that are sure to be there - declining funding, budget cuts, lots of misunderstanding, lack of adequate staff training, and on and on.

Proper supports must be in place and each student's situation must be assessed for his/her unique needs in the school setting. Inclusion doesn't have to be - and really should NOT be - an all-or-none situation. Finding the right balance between time in the regular classroom and time away from that setting for more individualized programming, or "down" time to help those with sensory issues or anxiety problems, is one of the keys to making inclusion work.

Most of the students I worked with needed full-time adult support in all school environments, but of course that isn't true for everyone. Obviously finding the best match between student and educational support person makes a huge difference; so does helping that support person know just when/how/how much support to provide, so as not to bring on learned helpnessness.

A few direct quotes from the article:

"Families with children with autism and developmental disabilities move from all over the country for the Madison schools." (Three families who have done just that are featured in the article).

"While it costs Madison $23,000 to educate a child with autism (to pay for extra support staff members) versus $12,000 for a typical child, Colleen Capper, a University of Wisconsin professor, said inclusion was cheaper than segregating students." I am not sure which part of this will be harder for most people to swallow - how much it costs for inclusion or the fact that it's more costly yet to go back to the old model. Our schools are hurting; they need our support!

"Madison is changing, however: an influx of poor children, a migration of wealthier families to the suburbs. Parents of the gifted recently petitioned for more honors classes . . . . " One parent is quoted as saying, "I am not convinced that even the most masterful teacher --- and we have many of them here in Madison --- can teach effectively to the full range of ability and need we currently have in our public schools. Not at the same time in the same classroom." I certainly would agree with that.

It's also tricky - and important - to find the right balance between an emphasis on teaching what we call "functional life skills" and the usual academics. The second article (which actually appeared earlier, on June 19, 2010) illustrates this quite dramatically. The headline reads, "Schools Struggle to Educate the Severely Disabled" and the article focuses on a young man named Donovan, age 20, who is about to leave the public school system in New York City. Donovan suffered a tragic accident as an infant and has significant multiple disabilities as a result.

Donovan - and others like him - are entitled to a free, public education as a result of federal legislation that has been in effect since 1975. But schools differ widely on just what services are offered and what is considered "education" for those whose abilities are as limited as Donovan's. He "recognizes familiar voices, and can mimic their intonations. He communicates some needs; at lunch, he pulls off his bib to show when he is finished. When happy, he sings fragmented notes, his scratchy voice rising in triplets and quads. But he cannot walk, does not speak and cannot feed himself or see much beyond shapes and shadows. On standardized assessments, he has trouble with tasks most children master in infancy . . . . he does not respond consistently to his own name."

Perhaps most significantly, when it comes to what is written in his Individual Educational Plan (IEP), "(t)he problem is that after 15 years of education, he has not learned how to do most of those things (skills targeted in the plan) reliably."

In many ways, Donovan is luckier than most. He has a mother who loves him and is happy because he seems happy - although she is unable to care for him at home. He has a teacher who "uses all of his creativity to adapt the lessons, writing his own books, using symbols, pictures and words" --- even though he is a first-year teacher. He has a principal who is willing to think outside the box, and whose goal for students like Donovan is to "strike a balance between functional and academic instruction, focusing on what is really important: the skills that Donovan willl need to help communicate to caregivers in the years ahead."

And along the way, Donovan had a very special educational assistant, who worked with him one-on-one for four years and forged a special connection, using a combination of tickles, head-rubs, and music to reach this particular student as no one else has been able to do. "He understands very well, quite as much as you and I do. If he could talk, and he could see, he could express himself a little bit better," says this dedicated (and undoubtedly underpaid!) "aide."

During my years of teaching, I worked in a residential facility, a segrated school, segregated classrooms in regular schools, and inclusive settings with varying levels of success. While those of us who are trained to be "special" educators and who CHOOSE to work in these settings might have the best interest of the kids at heart, and might be truly dedicated to what we do, we simply can't match the impact of having "typical" peers around on a regular basis and there is no way we can provide the intelllectual stimulation and challenge that is provided by the "regular" curriculum in the "regular" class setting.

If we think about kids like Donovan, we must meet their basic physical needs, and then their all-important needs for safety, security, acceptance and belonging. We must do all we can to provide an effective, meaningful means of communication, and we MUST continue to challenge them intellectually - regardless of the present level of performance or any measure of assumed cognitive ability.

We have misunderstood and vastly underestimated far too many kids for far too long. They deserve much better from our school programs.

Think, if you will, of Helen Keller. There are many more like her who are being missed completely.


  1. Less than a year ago I would have told you that it was inclusion before all else. THEN, I got the Dec 2009 report card... I knew I had the wrong teacher, they didn't give me the one they promised in June... Class participation - N. How?? It had been in the IEP since K and the teachers (Gr 2 and K) were always amazed at how well he did. Gr 1 was another bust. NOW, I had the same EA (aide) since Gr 1 - wonderful woman - so all was not lost.

    So, under the IPRC (Ontario) I threw a hiss, called the school board and demanded better. I didn't have to change to special ed. They cannot force you out. I had strict requirements on placement, on the Teacher, on the other children in the classroom... and he found me just that room.

    Ironically, my "for all intents and purposes" non-verbal, severely autistic son doesn't qualify for this classroom. See, although the verbal apraxia still give him trouble he can read at a full Gr 4 level (starting Gr 4 in Sept), he comprehends at early Gr 2, and math at K to early Gr 1. IQ says he's severely MR so we and everyone on our team ignores that one.

    He's over qualified for the room.... BUT, this Teacher, teaches - there will be 7 with him and 2 EA's. She teaches speech and communication - which we need desperately. Again, he will have to be segregated at times to be taught... but he's use to that. These children are slow learners - he's the only one with ASD and there's one with Downs. So, they love to talk, love to play, love new friends.

    I have no complaints about his peers at the other school. They have been amazing. But, sitting in a corner, learning on your own... just to be integrated... isn't always the best fit.

  2. It is tricky and as you say important.