From the L’Image, Spring 2012
Letter from ATEDM’s President, Mrs. Carmen Lahaie, that was delivered to the office of the Prime Minister of Quebec, Mr. Jean Charest, during a gathering which took place in Montreal on November 23, 2011. This letter was handed together with 87 other testimonies of parents of ASD children or adults with ASD who are dissatisfied with the services being offered presently with regards to autism in Quebec.
Mr. Jean Charest
Prime Minister of Quebec
In 2003, your government was the first in Quebec to recognize autism and ASDs as a specific entity with the granting of a first budget and a national action plan. We are grateful for that. However, this financial help came in a period of chaos. After decades of waiting, there were serious consequences involved for individuals with autism and their families; many of them were in a distress situation and completely exhausted. At the same time, the health and education networks were also in a state of crisis. Since the beginning of the 1990s, the important and constant increase in the number of autism diagnoses had created congestion everywhere. Nobody seemed to know how to serve this complex and demanding clientele. We were constantly being told: “No mandate, no budget, no services and we do not have the required expertise.”
Autistic individuals have always represented a clientele difficult to understand, because of their heterogeneity. The same diagnosis can be given to a person with a doctorate in mathematics with tremendous adaptation difficulties and someone with a severe intellectual delay and behavioral disorders. This constitutes quite a challenge when trying to implement functional services. Another great challenge, still relevant in 2011, was to develop field expertise for the clientele. Theories and myths about autism had to be left aside; still nowadays, people have their own understanding of autism which is often inaccurate and related to old myths, which translate into bad decisions and inadequate services.
Because of the extent of the situation and difficulties to overcome, we were expecting a more a much more detailed action plan. The autism file was not treated globally; we felt that its complexity and difficulty had not been fully understood. We were hoping for a national leadership and more explicit guidelines. We knew that the 30 million budget would be insufficient to respond to the needs of everyone, but we were thinking that it was just a beginning and that other readjustments would be made. We are still waiting.
This action plan was intended only for children less than 5 years old, and children more than 6 years old, teenagers, adults, ASD without ID and those with behavioral disorders were all left out. After more than 8 years, we are still waiting. We understand that young children are truly important, but all the others should not have been abandoned.
We were hoping that specific centers for ASDs would be created and innovative projects developed. However, ASDs were grouped together with intellectual delay, for which the approach is totally different. People who claimed that they lacked expertise in autism were given the mandate to develop a service offer with regards to ASDs. The lack of expertise and theoretical training are both far from reality. On paper, everything is always perfect. It is the implementation that is not working. Furthermore, your government is using an institution-programming instead of a client-approach. The client-approach is essential in autism, still because of its heterogeneity. The services offered do not respond to the specific and individual needs of the person; instead, they are related to what the institution has decided to offer. This does not generate the expected results and it is creating other problems, as well as frustration and dissatisfaction.
Mr. Charest, your government has never been preoccupied with doing a follow-up regarding the quality and efficiency of the services offered. Your interest was focused on the number of children who would benefit from the ICI program and the reduction of waiting lists without a budget increase. The direct consequence of this was that files were closed and services scattered. And when the MSSS request came with regards to the transfer of our clientele to the HSSCs, we knew then that there was a lack of interest on your part and a total misunderstanding of our file. How is it possible to think that such a complex clientele needing a very specific expertise and ultra-specialized services could receive its services from HSSCs already overwhelmed and lacking budget to respond to all the population? This is a dangerous situation for us. We could also say that presently, a lot of money is being spent for meetings with “partners” where we are able to witness bad decisions, false judgements and impossible requirements for parents and individuals with ASD and that is causing crisis situations. The lack of expertise leads to a misunderstanding of the problem, a lack of vision. In the end, we all lose, including caregivers who are discouraged by the repeated setbacks and blaming the parents.
The autism and ASD file has to be completely reviewed. It is essential to take into account this constant increase in the number of autism cases. If this factor is dismissed, it will be impossible to have efficient programs. Furthermore, a government should be asking itself what are the causes of this phenomenon with the goal of working towards prevention. Expertise is the key. The greatest challenge would be to offer services while developing different approaches that have been working well somewhere else. For example, Norway has hired TEACCH program professionals over a 2 year period so that they could implement the model while offering field training. They were also giving advices to government officials regarding how to efficiently organize services. The results are interesting for all of us
A specific expertise regarding individuals with ASD without ID must be developed, as they have been misunderstood and abandoned for too long. It is wrong to think that they can either receive the same services as autistic individuals or join the general population. They must have their own programs and a truly specialized approach.
Behavioral disorders generate a lot of energy and the different networks involved are feeling helpless and are putting a lot of pressure on parents and even abandoning them. Finally, adults are those who are the most forgotten. For them, we should innovate and develop a new expertise.
To this long list, we must add the creation of diagnoses centers for those who are more than 5 years old. Not much is being done presently for them. And since all the services are based on diagnoses, it is urgent to address this problem. It would also be essential to open at least one medical clinic dedicated to ASDs and intellectual delay inMontreal. There is a lot of discrimination and resistance from doctors to examine our children accurately and to be really interested by our clientele. Many behavioral disorders are related to physical problems and it is quite a challenge to find a doctor willing to do a minimum of tests.
Mr. Charest, presently, autism and ASDs are in a very difficult situation and it is urgent to work toward the implementation of a new action plan and, above all, to innovate. The dissatisfaction rate with regards to CRDITEDs and HSSCs is quite high and parents and individuals with ASD feel they can no longer rely on them Finally, I would like to remind you about what you told me in 2002, when you were in the opposition: “Mrs. Lahaie, never let a government tell you that it does not have enough money for your clientele, it is all a question of choices and priorities and there is enough money.” Thus, Mr. Charest, we are asking you to be once again part of your choices and priorities. Many lives are depending on them.
I wish to thank you in advance for your interest in our situation and demands. Several testimonies have been included together with this letter and they will let you know how urgent the situation is.
Please do not hesitate to contact me, should you need additional information.