A Word from the President, Spring 2010

From “L’Image”, Spring 2010

Autism and the health network transformation

In 2003, after many years of claims, the Quebec government finally recognized autism and ASDs by granting a first budget associated to a national action plan. The long waiting period and the lack of services had created a crisis situation on the field, not only for families, but also the public network authorities that were literally overwhelmed by ASDs. Like in several other countries, there was an important increase in ASD diagnoses in Quebec since the mid-1990s. The budget granted was clearly insufficient to respond to the tremendous needs regarding ASDs. It was a chaotic period.

During that time, the government started a new health reform. The Regional Health Authorities were abolished and the government took over the management and control of all the health network services. The government wanted to create a new form of service distribution: the HSSCs.

To do that, Montreal was divided into different territories. For each territory, service providers were grouped together, namely a hospital, CLSCs, a CHSLD and a CRDI. Each HSSC has to be able to offer all the basic services regarding health to the population of its territory and can have access to ultra-specialized hospitals, like the Neurological Institute. The CLSCs are the entrance door to the health system and have to be reorganized to offer new services that were previously offered elsewhere. The CLSCs have become the 1st line, the CRDIs and CHSLDs that are offering specialized services to a specific clientele are the 2nd line, the more specialized hospitals (psychiatry, for example) represent the 3rd   line and the ultra-specialized establishments like Pinel Institute, the 4th line. Access mechanisms and service corridors have been established. Unfortunately, this resulted in an increased bureaucracy, most of all because there is a lack of services and expertise. The basic idea was good:  they wanted the population to be closer to its services and reduce management fees. However, since the health network is almost constantly being revised, all changes become complicated: there is a permanent instability. In the end, we are always planning and organizing things and the reform is never over. When the mandate regarding ASDs was given to the CRDIs, we thought that the government had understood the complexity of our clientele and had categorized it so 2nd line services would be offered to individuals with ASD. It has not really been the case.

In 2007, we indeed learned that individuals with ASD had to join the general population in 1st line. The HSSCs have to be able to respond to the needs regarding ASDs and CRDIs will continue to offer more specialized services. All this is quite bewildering and scary. This proves that the government does not really understand the needs of individuals with ASD. Autism and ASDs require a specialized and very specific expertise. They cannot follow the same path as the rest of the population.

ATEDM reacted to this and as it is always the case, the Agence de la santé has created an advisory committee to assess the situation, discuss and make recommendations so as to plan the transfer of services. This committee was composed of representatives of all the public network authorities that can offer services to individuals with ASD and two parents. There was close to 25 people around the table and the discussions were oriented according to documents prepared in advance by the Agence. This does not leave much room for spontaneity. However, this committee has helped to identify several gaps and emergency situations.

The government has always omitted or refused to consider several important factors that have a direct impact on the organization of services regarding ASDs. I wish to mention these factors that can explain why we should finally have our own service center for ASDs. Even though these factors have been known for a long time, the Agence de la santé must follow the policies and action plans of the government. It is difficult to innovate.

  • 1st factor:  the constant annual increase of ASD cases. This increase can be easily seen in schools as each year, the statistics are alarming. How can government representatives be able to determine a budget if they refuse to understand and evaluate the whole situation? No census mechanism has been planned. They naively continue to claim that it is now easier to detect ASD cases and the public health representatives still refuse to take an interest in us. However, everything points out to an epidemic. The public health’s mandate is also to prevent and to do that, there has to be research to determine the causes. Presently, the government does not seem to show any interest or receptivity.
  • 2nd factor:  the lack of expertise is a critical element. No expertise, no vision, no understanding of the needs, no adequate evaluation, no programs or appropriate services. The consequences are catastrophic. In 2003, universities were asked to develop the expertise, far from the reality on the field and its emergencies. They soon found out that theory is one thing, but practice is another. Despite all the efforts involved to train their personnel, the CRDIs are still lacking expertise. The misunderstanding about autism has been the cause of bad decision-making and unworkable action plans. In 2010, we can say that CRDIs have not yet been able to develop all the necessary expertise, so how can HSSCs offer adequate services to our clientele?
  • 3rd factor:  the myths and theories related to autism are deep-rooted and harmful. We all have our own opinion. These theories that have never been proven scientifically are creating confusion and blocking innovation. The government is always mentioning these myths and is using them to avoid searching for causes. However, it should be the contrary. The government should be working to clear up this confusion. Logically, they should try to look for the causes, the best solutions and treatments and develop innovative programs, but this is not the case. Ignorance is less expansive for the government. Yet, it is insulting and criminal for our children. Their rights are flouted. Children with ASD deserve the same attention and respect as children suffering from physical diseases.
  • 4th factor:  the heterogeneity and complexity of ASDs are also ignored. We categorize and offer the same services to all. In fact, ASDs represent a large category in psychiatry textbook. They do not constitute a diagnosis. To be able to better understand if someone has cardiac symptoms, we do not say that this person has cardiac disease. Tests and examinations are used to determine the diagnosis and the disease. We look for the possible causes to offer the appropriate treatment. For autism, people are only trying to identify the large category. It is not logical. All ASD cases are different and require their own diagnosis, treatment and educational program. The absence of diagnosis leads to failure and the rights of individuals with ASD are once again disregarded.
  • 5th factor:  to group together ASD with intellectual delay or mental health has complicated even more the organization of services. We must remember that CRDIs had to develop services for ASDs very quickly and in a situation of crisis and insufficient budgets. We should also mention union pressures and the resistance of caregivers to change their vision and practice and we end up with quite a challenge. Our government has decided to opt for a service offer: each CRDI must determine in advance which types of services it will offer with regards to ASDs. It is an approach based on the establishment, but what we want is an approach based on the client. Each person with ASD must be evaluated individually and then, receive the appropriate services. The approach based on the establishment increases bureaucracy. It creates waiting lists for services that are often not the one required. Ideally, specific centers for ASDs should be created.
  • 6th factor:  the fact that adults and teenagers have been forgotten in the national action plan is unacceptable. The money granted for ASDs was in great part given to develop early intervention for children less than five years old. We had asked that ABA programs be developed, since our children’s future depends on how quickly intervention is started. However, this did not mean that the rest of the clientele had to be forgotten. The lack of appropriate services contributes to crisis situations and severe behavior disorders (SBDs).
  • 7th factor: SBDs still represent a major problem. In 1995-1996, a two-million budget was granted for the development of state-of-the-art expertise. Yet, in 2010, we are still having the same discussions at the Agence de la santé. What happened to those two-million dollars? To summarize, I would say: a lot of theoretical training sessions, backroom politics around this money, few innovations, very few “practical results” for the client, a lot of documents and no direct actions.
  • 8th factor:  no evaluation of the results obtained. In Quebec, we reform, organize, develop new services, but do not wish to know if all this works out. We want to know the number of clients receiving services and find out if waiting lists are getting shorter. We are not concerned with the quality of services. Is the client getting better of not? This is not important. That is what happened with ASDs and the two-million dollars. When we were asking for the evaluation of the results obtained, we ended up with the number of caregivers that had been attending conferences and the degree of satisfaction of the establishment managements. However, the only question that should have been asked is the following:  does the client still have an SBD? If so, why?  If not, why?This inability and lack of willingness to evaluate the results obtained are still a major problem for ASDs. In 2003, IBI services were developed without first evaluating the quality of services. They decided to transfer a clientele that was still in a crisis situation with an insufficient budget to the HSSCs without even evaluating the catastrophic effect of this decision. For the government, autism has been a classified file since 2003. Demands are not well accepted and there is no interest for innovation.
  • 9th factor:  there are not enough services regarding ASD without ID, particularly for teenagers and adults. Several of them are living a difficult situation. The budgets devoted for this clientele are pathetic. We are talking about years of waiting to obtain a diagnosis that leads to another waiting list. Furthermore, ASD without ID is not well-known. Individuals with ASD without ID look so normal, so intelligent that their limits are soon forgotten. They are asked to behave normally, which can cause even more anxiety and distress. They cannot be put in the same group as intellectual delay, mental health or other ASDs. Their needs are different and a specific expertise has to be developed for them. The Agence de la santé de Montréal has recognized the problems associated with ASD without ID and another committee will be created to determine the services to be offered. Once again, there should be room for innovation. An expertise should be developed with projects that can allow services to be offered while experimenting different approaches.

Many of the problems of our children result from a lack of expertise and understanding. Even though we criticize the public system, the caregivers working with our children are also victims of this system. We can see that the great majority of caregivers have a lot of goodwill and work with their heart. The constant failures are what demotivate them.

So, what can we do? Keep our faith and show a great determination. Please rest assured that ATEDM will continue to militate and make demands. Your help is very precious to us. The complaints you make are important. Even if you think that they will not solve your problem immediately and that actions are often difficult to take, all this is important. The government likes to quantify. Therefore, complaints are counted and for the government, they become indicators of the network functioning. The more complaints there are, the more attention we get. Presently, HSSCs are not ready, able or organized to serve our clientele. Even for the general population, the services offered are uneven. So, we have to speak clearly and strongly. I often say that it is up to us, parents, to defend the rights of our children. They cannot do so themselves. After all these years, I still firmly believe that faith and determination can move mountains. Inform us about your actions and contact us if you need help, support, etc. Thank you for your support.

Carmen Lahaie

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