From “Image” Spring 2014
When you read these lines, we will probably have a new government. Pre- and post-electoral periods are never suitable for the advancement of our cause, because of their expectations and neutrality. Autism is not an election issue yet, so we “wait”. Governments are big and complex machines. Lobbying and advocacy actions represent a big challenge. We think we have convinced ministers and deputy ministers and increased their awareness and bing, bang, boom, their mandate ends. So, we vote and start the whole process again.
Even when a minister decides to act, there is a huge machine underneath: that of the public servants and institutions. Very difficult to manage and particularly resistant to changes, this machine has developed, in 2003, the first national action plan for autism and ASDs, and public servants are still hanging on to it, in 2014. This action plan was not complete and its focus was on children less than 5 years old. The rest of the clientele was left aside. We were expecting revisions, new evaluations, modifications, but nothing has been done since 2003. The consequences of the lack of services and expertise and waiting lists associated with the constant increase in autism cases are serious.
In 2003, we were experiencing a crisis situation, in 2014, it is chaos and the more the government waits, the more difficult it will be to act. Families are exhausted and tired of waiting and school boards are at the end of their rope. And the government is still ignoring us, which is difficult to understand.
Furthermore, the legal “responsibility” with regards to autism remains very unclear. In the public system, who is responsible for our clientele? For those less than 5 years old, it is the CRDITEDs, but if the CRDITEDs are now claiming to be consultants, who will then be the service “providers” for individuals 5 years old and over? Presently, when a file is complicated, it is harder to find those “responsible” for it. This is alarming, because when we, as parents, are no longer here, who will be truly “mandated” and responsible for our loved ones?
According to health agencies working to develop new service plans for 2014-2017, the CSSSs should be the service providers. This is even more alarming. The CSSSs do not have the expertise or budgets necessary to support autism. We remain a complex and heterogeneous clientele and specific expertise should be developed to respond to the needs of each autistic individual. The lack of expertise and vision is putting our children and adults “at risk”.
The consequences are serious. This is why we must continue our advocacy actions. We are facing great challenges. Despite all this, we have been able to observe some progress: thanks to your complaints, your telephone calls to various ministers or MNAs and your visits to those MNAs, the Québec Ombudsman conducted 2 inquiries regarding the services offered to autistic children less than 7 years old and adults. The Auditor General has, for his part, performed an investigation regarding the use of funding allocated to autistic individuals, which do not result in direct services. All these inquiry reports have been submitted to the Members of Cabinet and we have requested new planning and actions from their part.
Thank you! Thanks for all your efforts, because I know just how complicated your lives can be. We, parents, remain the voice of our children and support for our adults who want to have access to their lives.
A word on the controversy regarding the increase in autism cases… The diagnostic criteria are now better, of course, but where were those children before? What was their school classification? Because if we take children in a category and put them in another, this should be proven with the statistics of the Ministère de l’Éducation. Yet, according to those statistics, autism cases only have increased. All the other problematics have been stable for years.
I think that this is a false debate and that we have to concentrate and put our energies on the support to give to those children as quickly as possible. Early and innovative intervention plans should be implemented for all children with difficulties, disorders or developmental delays to maximize their chances of recovery. We have to think about prevention, action and research of causes. More specifically, I am talking about medical causes, which have been completely ignored by our doctors, but are essential to develop a better and more efficient treatment plan. Regardless of which government is in power, we will continue our advocacy actions with you.
Thanks again for your support and participation in all our activities. Every action is important. As Mrs. Doyer, ex-PQ Minister, told us frequently: “What is important, is your perseverance and determination. Autism has to become a big thorn in the foot of the government.” So, we have to continue our actions and become this “thorn”!
Autisme Montréal’s President