A Word From the President, From “L’Image”, Fall 2007
Advocacy of Individual And Collective Rights
Organisations like ATEDM were created by parents who wanted to fight for their children. They wanted to see autism recognised, the rights of the people affected by this disorder respected, and the promotion and development of programs specific to this ill-known and abandoned clientele. The « collective » aspect of advocacy was first and foremost.
Since the government was not budging, families were alone and tired, and the available subsidies for community organisations were for respite services and the like, the organisations started offering “services”, which they did with great success (low cost, satisfied parents and quality programs).
You will understand that for parents who are already very busy taking care of their child with autism, organising and managing services took a lot of energy. But the results we had were also interesting because they proved what we had been saying and clearly showed our children’s potential. Children and caregivers were experiencing success with minimal cost, good planning, and a lot of good will, which served as a good model for the public network.
However, the requirements of offering « services » were taking parents away from their primary mission: advocacy. Whether they have autism or not, all children need a voice to defend them, especially those who live with severe developmental delays or behaviour problems. Because of their communication problems, all people with autism will always need advocates to defend their rights.
Parent-led organisations must keep up the work and perfect both levels of advocacy. If they don’t, who will? We have blood ties to autism, and whatever happens in the ASD world, we are the first ones affected, the first ones on the line. Advocacy also encompasses political lobbying, which is ill-recognised and seen in a negative light in Quebec.
Advocating and lobbying is like playing chess and requires strategy. Lobbying includes many actions that promote and advocate, and which are proactive on many subjects such as the medical aspects of autism, research on the causes, the constant increase of ASD, new educational programs, innovating employment programs, etc. We must not be in a reaction process but rather in an action process.
Advocacy for collective rights is at present limited by the government in « organised and controlled » participation in committees and inquiries. These committees with no decision-making power make recommendations to ministers or the health boards. These committees always work the same way. Members come from different establishments of the public network – often 15 to 20 people – of which only two of these represent parents and community organisations. We receive a document for discussion, but we sense the decisions have already been taken and that no important issues will be discussed.
If we want to protest, demand major modifications or submit something else, they listen politely, but we are beaten in advance, crushed by numbers. In the end, we are always made to appear as though we agree with the document, because our names and our organisation are on the committee’s member list, annexed with the recommendations. This is worrisome and unfair.
Advocacy of individual rights is also very important and complements the other aspects. When you are facing difficulties, contesting decisions, unsatisfied with services or facing expulsion from a service, ATEDM will sit down with you to pinpoint your child’s needs and difficulties to find concrete solutions.
The lack of knowledge and expertise often creates crises in which you and your child become victims. To defend one’s self is no easy task, even for the most determined. That’s why we insist on the importance of advocating for one’s interests.
The government has created a new complaint mechanism. Even if it seems worrisome to complain when the situation is difficult, you must do it to advocate for your child. Complaints are counted, and for ministers, it gives them an idea of what the population thinks of the quality of the services rendered. The more complaints in a sector, the more inquiring attention it commands. You must know that this structure has no decision-making power.
However, when they analyse the complaint, the person in charge has to review the situation, speak on behalf of the client and come up with solutions to make recommendations to the institutions. This is interesting because it starts from the client’s needs, and not the other way around. Please make sure someone accompanies you in this process and most of all, keep us informed.
Let me conclude by thanking all of you for being there for your children and the autism cause. We often feel powerless when we’re alone, but know that through your actions, your demands, your courage and your determination, you make a difference. The road is long and full of obstacles, but together, with all our will and our faith, we will open the way where mountains block our children.