A word from the President, Spring 2013

From “l’Image” Spring 2013

2013 Advocacy File

We were hoping that the change of government would be favorable to us because the Party Québécois has been aware of our cause for a long time. In the 1990’s and at the beginning of the years 2000, we undertook many advocacy actions when they were in power. At the time, we took part in several work committees, numerous meetings, public consultations, surveys, etc. We also wrote essays, presented service organization propositions, all this to say that the PQ knows about autism. And more recently, when the PQ represented the official opposition, they accepted to help us with our latest advocacy actions. We were working in collaboration. The PQ is well informed about autism, the current situation and the content of our requests, but a change of context brings on a change in attitude and suddenly, our file is not so important anymore.

Right after the elections, we have asked to meet with representatives from the Ministries of Health and Education to report on our situation, submit our requests and find out what the position of the government is regarding our file. Last November, we met with the assistant of Mr. Hébert, Minister of Health. During the discussion, we felt a good deal of resistance with regards to our claims. The MSSS was happy to confirm that the 35 millions announced by the former government for handicapped people would be maintained. This may seem like a lot of money, but in the end, it means that there could be about one million for autism in the Montreal region. If we take into account all our particular needs, we can say that is clearly insufficient. This money was sent to the CSSSs to respond to the needs of families and community organizations offering services related to autism. The Ministry was waiting impatiently for the filing of the inquiry report on the services offered to autistic individuals and their families which would include recommendations for the government. This inquiry was requested following 2 official inquiry reports done by the Quebec Ombudsmen regarding the services offered to children less than 7 years old and those offered to adults. It is also because of the complaints you made with different authorities and our advocacy actions that this inquiry took place. During this meeting with the MSSS, we heard this polite response from a government that does not intend to give priority to autism or invest new budgets: “You know, a government has to make difficult choices sometimes and establish priorities.” It is clear that autism is not one of their priorities.

It is quite difficult to understand why, in 2013, autism is a trivial issue. Yet, the constant and important increase in the number of cases should raise the alarm: autistic individuals remain the most “pervasive” one for the school boards, CSSSs and diagnostic centers. The government may continue to ignore us and shut their eyes and ears so that they cannot see us, but right now, autism is like a thundering volcano that will soon erupt. Unfortunately, our children, autistic individuals and their families remain the biggest losers. Would we see the same denial attitude with another form of epidemics? What about the billions invested to fight against H1N1? Would it be ethically acceptable to refuse to treat people who have cancer because the government must establish some priorities? Our file was never assessed globally and it is still incomplete. We are caught up in the system. The government employees working on our file do not have the expertise necessary to truly understand the needs of autistic individuals. So, no expertise, no vision to organize services, no adequate planning. We are left once again with generalities and since the government does not wish to invest, they do not want an alarming file that would force them to completely review their programs.

The lack of expertise has led to many bad decisions. In 2003, the autism mandate was given to the CRDIs in a context of crisis and exhaustion. The budgets were insufficient and the “requests” of the Ministry unrealistic. During those 10 years, our file has not evolved and priorities went to the structure, service offer, mandate transfer to the CSSSs, waiting list control, MSSS-MEL partnership agreements, CRDITEDs’ fusion, access mechanisms, etc. All this supposedly to better serve the clientele. This bureaucracy responds to the needs of the establishments, not those of autistic individuals. When they are only taking care of papers, they are moving away from the clientele and feeling less incompetent.

In 2013, the status report is just as catastrophic as it was in 2003, and even worse because there are less services and more autism cases. When we are looking at the diagnosis aspect, we can see that there is still a lot of waiting, almost 2 years in some places and no development with regards to diagnostic evaluation for children more than 5 years old, teenagers and adults. As for early intervention, it is quite uneven and the 20 hours/week are not always offered. There is no service diversity to respond adequately to the needs of all children. There are waiting lists and a lack of expertise. The files of children more than 5 years old are generally closed because children are going to school, which makes no sense as a follow-up at home is essential to ensure a continuity of services and maximize the development of the child as well as the autonomy of adults. The files opened during the schooling period are those of behavioral disorders. The CRDITEDs can then offer some services, but parents are the ones who must run everywhere to satisfy the requirements of the school and try to implement the CRDITED’s recommendations, which does not make any sense. Parents are not trained caregivers: they are the clients, those who need help. CRDITEDs are now defining themselves as consultants because the CSSSs have become our first service providers. The CSSSs do not have the budgets or expertise to serve a complex clientele such as autistic individuals. And the CRDITEDs, which have all the service budgets are consultants for whom? We often see ethically questionable decisions and closing of files that put children and families in danger. So why do we have CRDITEDs, if they abandon all their clients so that they can eliminate waiting lists? How can there be results if you do not make long-term investments for those who have behavior disorders? And if we take a look at the services offered to adults, we can see that they are not quite up-to-date. Again, the services offered are scattered and this translates into episodes or limits with “one service at a time”. The residential component should be reviewed completely. Aging parents are worried about leaving their child in such a system and in such conditions.

With regards to educational services, the increase in the number of autism cases complicates the organization of services and once again, there is a lack of training, expertise, guidance and ratios are too high. There are more and more exclusions and suspensions, partial schooling and an excessive medication use.

In 2003, we thought that autism was finally recognized. Even if the budgets granted were clearly insufficient and the first service planning incomplete and discriminatory, we were hoping that there would be adjustments made. We were thinking that it was only the beginning, but nothing else came afterwards. So, when we were informed that an inquiry would be made on services offered to autistic individuals, in the 2011 fall, we were happy. After all these years of advocacy and actions, however, we remained quite skeptical and realistic regarding this inquiry, but were glad that our file was going to be reactivated. The inquiry report was deposited with the new government in December 2012. Along the way, this enquiry became the 2008-2011 report of the document “Un geste porteur d’avenir”. This document represents our first and unique national action plan related to the 30 millions granted in 2003. At the time, we did not agree with this plan because, as mentioned earlier, it was incomplete, too general and discriminatory, since all the autistic individuals of more than 5 years old had been forgotten. It is not really helpful to evaluate the implementation of a plan that is not related to the current situation regarding autism. It is much too general and the results do not demonstrate what is really happening on the field. Consequently, this report does not represent the chaotic situation of autism in 2013: no questions on the causes of the constant increase or the quality and quantity of services offered. The development of a field expertise is essential. This is mentioned in the report, but the recommendations with regards to the development of the expertise are not precise enough and much too far from the clientele and field.

We had a second meeting with the MSSS to let them know about our reactions and comments on the 2008-2011 report and to give them a more realistic and current outline of the situation regarding autism in 2013. We talked about the fact that files were being closed and families and autistic individuals abandoned. These service refusals or ruptures are putting a great deal of families and people with ASD without ID in danger. We saw some more openness. The government is thinking about this.

In conclusion, we must continue to fight so that autism may step out of the shadows and become a national priority. We need all of you, parents, grand-parents, uncles and aunts, autistic individuals, friends, caregivers, etc. We have elaborated a new action plan, which started in April, autism month. All the advocacy approaches and actions have been announced on our Website and are available at ATEDM’s offices. Thanks for continuing to make complaints with the various service network authorities and the Quebec Ombudsman. Thanks for contacting your Member of Parliament and political staffers of the Ministries of Health and Education. Thanks for soliciting various media. A huge thanks to those who are writing open letters in newspapers and parents who have written books. All the actions, even those which may seem negligible, are important. I wish to conclude by saying once again that our faith in our children and great cause is unshakable. We must persevere because we are the voice of our children and our love and determination are very powerful tools.

Carmen Lahaie

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