NOTES FOR REMARKS IN THE SENATE ON THE STUDY ON FUNDING FOR TREATMENT OF AUTISM
Honourable senators, I recognize that it is late in the day but I do want to speak to this motion and move it forward. I rise to speak about a subject that honourable senators know I care passionately about. The subject, of course, is autism. I endorse the remarks made by the Honourable Senator Eggleton, who provided details about the Twelfth Report of the Standing Senate Committee on Social Affairs, Science and Technology entitled, Pay Now Or Pay Later: Autism Families In Crisis. He shared some examples of the heart-wrenching testimony we heard during the committee’s work, especially the testimony of parents who, day in and day out, deal with the demanding and difficult task of providing care, finding care and buying care for their children with autism. He also shared the very positive experience of hearing from adults with autism, who were able to tell us how autism has affected their lives and about the treatments they did or did not receive.
I am proud of this report and the attention it has drawn to this pressing issue that affects one in 160 families in this country. We learned a lot from individuals and families affected by autism but the inquiry also allowed us to learn something about ourselves and about our system of government, and that is what I will focus my remarks on today.
Autism is a complex condition that affects people differently and in varying degrees. It is a baffling condition that challenges us because it overlaps so many areas of responsibility and jurisdictions. We tend to think of autism as a health issue because it is considered a neurological disorder, yet the treatment for autism involves a whole range of professionals beyond the field of medicine. Teams of educators, therapists, social workers and counsellors must all come together to help individuals and families with autism.
Unfortunately, this is where we, in Canada, stumble and fail far too many people. Let us remember that our health care system was brought into being some two generations ago and was designed to fund care provided in doctors’ offices and hospitals. At that time, autism was seldom seen, and when it was diagnosed, it was considered to be a psychiatric disorder.
Honourable senators, now we know that autism is not an illness that can just be treated in hospital or in doctors’ offices. It cannot be cured with a prescription or a vaccination. No surgical treatment that we are aware of will help people with autism connect with the world. While there may not be complete consensus among professionals and families with autism about the best treatment options, one thing is clear: A multidisciplinary approach that includes the medical and educational systems and social services is what works best.
Unfortunately, getting those sectors to work together and funding those sectors to work together is not something that Canada does best. Autism demands a new approach; it needs a new box of policy tools to help individuals and families affected by autism. Right now, in Canada, we spend too much time explaining why we cannot help people; we offer the tired arguments of provincial and federal jurisdiction as an excuse.
From my perspective, the time has come to spend less time offering excuses and more time finding solutions. This means abandoning the jurisdictional shell game. Of course, funding for health and education is a provincial concern. That is a fact, but so what, honourable senators? That does not reduce the number of people with autism. That fact does not help families who are going broke paying for expensive treatment for their children.
One of the recommendations of the committee’s report is that a federal-provincial-territorial meeting be held to develop a national strategy for autism. We also recommended that people with autism and their families be at the table.
It is essential that this meeting take place and it is vital for any national strategy to tackle the tough issues relate to treatment. As honourable senators know, treatment for autism in Canada depends on where one lives. In Alberta, there is funding to help families and many families are pulling up stakes from other parts of the country — the Maritimes and Ontario — and moving to Alberta to have access to treatment. It is another much sadder kind of Calgary Stampede.
However, a problem arises when they get there because Alberta, a victim of its own generosity, perhaps, does not have enough therapists to provide the necessary care. In Ontario, there are therapists but children languish on waiting lists because of lack of funding.
Honourable senators, my point with these examples is that the barriers that prevent us from helping individuals and families with autism are not insurmountable. In fact, they are administrative and bureaucratic in nature. It is about who pays and who does what. That is not difficult to figure out. It requires commitment, an open mind and a willingness to do things differently. We have the tools to address the problems but we have to use them in a different way.
This is the challenge we face. It is my hope that the government response to the committee’s report will reflect a willingness to take a new approach and to do things differently. I mean this seriously. By calling itself “Canada’s new government,” this government must meet the challenge of doing things differently to help the one in 160 families affected by autism.
This is our greatest challenge. The other recommendations in our report are easier to address. Autism is difficult to diagnose and, for now, impossible to prevent since we do not know its cause. Our report was very clear. Research to understand the causes of autism must continue.
We must also ensure that the research already done on autism and its treatments is available to those who need it, particularly the parents of autistic children who are often overwhelmed by the volume and sometimes contradictory nature of the information available.
Research is essential, as is access to information. Everyone supports this initiative.
In closing, allow me to repeat: The priority that all honourable senators hear from the parents is to make treatment accessible to more children as soon as possible. As one father said to me, “My son does not need research; he needs treatment.”
We have to find a way to move beyond the federal and provincial jurisdictional wrangling. We need to acknowledge at a national level that autism is a national issue that requires concerted action. If we can work with the provinces to reduce waiting times for knee and hip replacements and cataract surgery, then we can do the same for autism treatment.
It is time to acknowledge that the obstacles impeding our progress and preventing us from helping people with autism can be overcome with good ideas and a firm commitment to teamwork.