Monday, May 19, 2008

Sunday - May 19th Information HUNGER STRIKE

AFA sends this message to the Autism Community, Sunday, May 19, 2008
From Bruce McIntosh, and Taline below this:

It is with great relief that I pass along the news of Laura's conversation with Stefan earlier this evening:

Stefan has decided to end his hunger strike and is now eating!

Stefan made this decision on his own. He hasn't made any firm decisions about next steps, although he is quite clear that he is going to continue advocating for all children with autism and his son Simon in particular. I'm going to get in touch with Stefan later this evening (we seem to do our best after dark) regarding whether we can get another shot in at the government when we release this to the media.

My apologies if you're receiving this news more than once, but I am mailing first to individuals and will follow up with an OAC blast later this evening.




And this from Taline;

May 19, 2008

My understanding is that Stefan is still continuing his hunger strike and is visiting Queen's Park on a daily basis. He clearly wants to stop but will not give up until he has a concrete answer from our government.

I write this piece as a possible conclusion to my effort to communicate timely information on this subject. I will continue to update all of you on our Class Action Lawsuit and also the Ombudsman and will only update on the hunger strike if there is any significant news to share.

Over the last couple of weeks, I have had the pleasure of spending hours talking to Stefan who has amazed me time and time again as to just how determined he truly is. Many are quick to pass judgment on him and why he's decided to take on such a radical form of advocacy. Those who have taken the time to visit and talk to him have learned that this man has a heart that is bigger than he is. I witnessed with my own eyes what he and his family have to live with and it has crystallized every fear I've ever had of what happens to a child with autism when gone untreated. Stefan's is the poster family of just how wrong things are for children with autism and their families here in our great province.

Stefan learned within a few months what took most of us years to learn about our inefficient and unfair system for delivery of publicly funded autism programs and services. It is hard to believe that families are going bankrupt, getting sick, and starving themselves on the front lawn of a building that houses the very people who were elected to watch over our citizens. However, these are the facts.

There have been many lessons learned from this entire experience for our community also. For instance, we learned a little more about human nature - that there are some who don't care that a man starves himself to drive home the point that our children are being discriminated against.

We learned once again that the fragments in our community are still there and very real.

We also learned that many families are in such crisis that they can hardly get through the day to day difficulties of just having to raise a child with autism without having to also maneuvre through government and school board bureaucracy and the immense financial obligations before us. Many families wanted to come out and support Stefan but could not due to their archaic schedules.

But most of all, through the sad circumstances of Stefan and his family, we learned something that can only be described as sheer irony. During this entire process, most did not think to even ask where Simon is. Afterall, Stefan's plight is all about his son Simon and other children with autism. Would it surprise anyone to know that Simon is in a public school with direct support from not one but TWO full-time Education Assistants? The cost of "educating" Simon is approximately $80,000 per year.

Irony that while we are told that there are not enough public resources to help Simon and other children with autism, taxpayers spend to the tune of $2Billion per year in special education funding for children with disabilities, including children with autism. Irony that some media will consistently report on "expensive IBI treatment" and "costly autism therapy" while they neglect to communicate to the taxpayers that they are already paying for babysitting services for our children in the schools. Irony that perhaps we haven't done a good enough job of educating the media, the public, and one another on this particular point.

Our children have real potential. We as parents and professionals who are dedicated to the evidence-based intervention ABA/IBI already know this. Convincing our medieval education system in Ontario of the same is a whole other story.

Taline Sagharian

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