Thursday, August 12, 2010

Ontario’s Autism Crisis

This article was written by Taline Sagharian and posted and distributed by Autism Canada on their Facebook page and their newsletter.

August 2010

I won’t attempt to quantify in this article the immense amount of effort that my colleagues and I have dedicated towards the autism cause. There is no question that the climate for autism advocacy in Ontario has changed drastically over the last decade. When comparing the tiny steps in the improvement of autism funding and services in Ontario to actual large scale advocacy events, it is obvious that a clear relationship exists between the two and I doubt that this correlation is a mere coincidence. The autism and Applied Behaviour Analysis (ABA) advocacy community in Ontario is the envy of all other disabled rights groups. We are focused, we are relentless, we know what our children need, and we do not take no for an answer. I will not take this opportunity to elaborate further on this except to say that this story would be better suited to fill the volume of a book someday.

I have been advocating for appropriate publicly funded autism programs and services for much longer than I had originally planned, and have therefore witnessed its evolution. What has surprised me most is not the ignorance of elected officials who hold our children’s fate in their hands, but rather, their arrogance. Learning is a part of life, and there’s nothing wrong with making mistakes—so long as we learn from them and move forward. I believed that once we offered viable solutions to the severe gaps in programs and services for children with autism in our province to those in charge, they would listen and work with us parent advocates to create a change for the better. Silly me.

As a child, I remember watching a cartoon where the character was sitting in a boat in a body of water, and water started coming in through a hole in the boat. He successfully plugged the hole, but then another one appeared and water came in through there. Although he was able to plug this second hole too, several new holes appeared, and he found himself frantically trying to plug them all as more and more holes let water into the boat, and the plugs in the others broke too. I can’t help but find this cartoon character’s dilemma similar to our government’s strategy of attempting to place plugs in the many holes in autism programs and services. The quick fixes may serve as short term solutions; however, the vessel is in desperate need of serious repairs.

The autism crisis that Ontario is in today took many years to build, for from its inception, the IBI (Intensive Behavioural Intervention) program, which is the provincial government’s publicly funded ABA program, has been riddled with glitches, the most obvious of which is the lack of a continuum of services for school-age children with autism. The pressure has fallen entirely on the shoulders of the Ministry of Children and Youth Services to help children with autism, which has led to a tremendous IBI waitlist, the issue of premature cut-offs from the program, and the mutual exclusivity between IBI and a public education. After several years of litigation and advocacy urging the Minister of Education to rectify this pressing matter, a memorandum was finally issued to the Ontario school boards instructing them to deliver ABA—not IBI. The Ontario government’s perversion of the distinction between ABA and IBI prevents children with autism from receiving adequate treatment and education, because the Ontario school boards are relying on this distinction to serve as an excuse as to why they can’t provide for our children’s needs in the school system.

Until such time that school-age children with autism are able to receive a publicly funded education and ABA—REAL ABA—including IBI together, the question of if, how and when to cut off children from IBI will remain unanswered. Families will respond to any proposed cut-off through various creative means of protest, the waitlist for IBI will continue to grow and children with autism will continue to live in the shadows of Ontario’s public education system, and ultimately, as second-class citizens in our society.

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