A Word from the President, Fall 2012

From “l’Image” Fall 2012

Defense of Rights and Political Claims:   2012 Summary

Since its creation in 1981, ATEDM has never ceased to make claims and militate. Of course, there were several victories, like the opening of the first autism class in 1989, the first specific committee at the Montreal regional board in 1995, the TEACCH training sessions, etc. Even after all these years of claims and actions, however, autism still remains an unimportant file and was never assessed globally. Yet, the important and constant increase in autism cases should raise the alarm. In the United States, the CDC (Center for Disease Control and Prevention) mentions that the prevalence of autism in children is 1 in 88 and in some states, 1 in 50. This is huge. We can really say that we are facing an epidemic and the same situation is happening everywhere in the world, even here in Quebec. Since there is no system that would allow us to have a better idea of the exact situation, ATEDM uses the statistics from the school network to demonstrate that the increase is real and constant. The numbers from the Ministère de l’Éducation are the most accurate since the granting of the special budgets is related to the diagnosis. Year after year, this increase continues.

In 2012, autism is still mired in its old myths and everybody has their own theory. Autism does not really represent a diagnosis: it is a large category, which comprises individuals with communication, socialization and neurosensory problems. Those individuals all have different limits or problems. Actually, each autistic individual should receive a specific treatment. For the government, autism is quite complicated. Because of constant budget restrictions, they do not wish to hear about the creation of new centers dedicated to autism and even less about innovations or the development of new expertise. One education program should be sufficient for all. We are constantly reminded that a government cannot offer a response to everybody and that they must have priorities. Politicians also tell us that those who shout the loudest and are persistent and annoying are those who attract more attention for the decision-makers. This is why I will talk to you again about political actions.

In 2003, after the announcement of the first budget making our existence official in the programming of the government services, we were happy and thought that finally, the mechanism had been triggered. Even if the national action plan was incomplete and focused only on children less than 5 years old, we thought that it was a beginning and that other projects and readjustments would follow. Well, we are still waiting for them. We soon found out that these budget and plan were a strategy to oppose the class action against the government. This class action had been undertaken by parents of young children who wanted to condemn the absence of early intervention program like ABA. The class action being cancelled, the government lost all interest for autism. Our file was “closed” and the only preoccupation of the Ministère was the control and reduction of waiting lists without the addition of any more money. The situation was becoming complicated for us. The health boards that were making decisions and had been informed about autism were transformed into health agencies and became only doers. All the officials who knew autism left. We did not have anyone responsible for our file anymore. Furthermore, the different ministries did not respond to our requests to meet with them.

Even worst, in 2005, the Ministère asked the health agencies to work so as to transfer the autistic clientele to the HSSCs. We strongly protested with all the arguments that you know well, but nothing could stop this transfer. The HSSCs became our first service providers, but without any more money or expertise. The CRDITEDs became consultants and psychiatrists experts. Our situation was becoming catastrophic. For us, this was chaos. We had to act.

Thus, we asked you to use as often as possible the new complaint system. We have encouraged you to make complaints even if you knew that you would not obtain satisfaction. For the government, the complaint system remains the only way to evaluate the quality of the services offered. The more complaints you make, the more visibility autism has with the government. We also asked you to call the Quebec Ombudsman as well as your Member of Parliament, to contact the media, etc. And you did this very well. I wish to thank you for that. Your complaints led to two official inquiries regarding autism by the Quebec Ombudsmen. The first one was about the services offered to children less than 7 years old and the second one about the situation for teenagers and adults. The results of these inquiries have been submitted directly to the office of the Prime Minister at the National Assembly. The first inquiry, submitted a few years ago, demonstrated a high rate of dissatisfaction, particularly with regards to the quality of services, the lack of expertise and continuity, the closing of files after the child started school, etc. This report led to other studies and research regarding the evaluation of the IBI program. The government is still wondering which program would be the best to use, but since they do not want to develop new services, we are going around in circles and bureaucracy prevails. The inquiry report regarding the adults was submitted before the elections and has not yet been made public. However, we can predict that it will not be very positive.

In 2010, we decided to meet with the Parti Québécois, then representing the official opposition, to ask for their help and support. Mrs. Doyer was in charge of our file. We worked with her on different strategies so as to increase our visibility with the government. We solicited your help once again for various actions and events. Thanks a million for your participation and support. The 2010 actions led to another inquiry asked by the Minister for Health in charge of our file. The report of this inquiry has not yet been submitted. We must continue our political actions, otherwise these inquiries will be forgotten. Mrs. Doyer was strongly encouraging us to continue. She was telling us that our determination and resilience were important. Mrs. Doyer retired from political life and I wish to thank her most sincerely for her precious help, advices and all her interventions at the National Assembly. Her message for us: “You must be a thorn in the side of the government so that they have no choice but to give you priority.”

We now have a new government and if we want to draw their attention, we must continue our crusade. We will soon contact you for a new series of actions. Our political claims must continue. Again, a huge thanks to all of you. I know just how busy and complicated your life must be. Some people think that political activism is negative and can be harmful to a cause. This is not true: it makes us stronger. We are the voice of our children and those who cannot defend themselves and militate for their life. We have been neglected and abandoned for too long.

My faith is unshakable and I am certain that together, we will win this fight.

Carmen Lahaie

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