NOTES FOR REMARKS: AUTISM SOCIETY OF PEI
Ladies and gentlemen, friends. What a pleasure to be here with you tonight. What a pleasure to be on Prince Edward Island, to be back east.
It’s been just a little more than three years since I was appointed to the Senate. In those three years, I have focused on doing what my father, a United Church minister, always wanted me to do. I have been trying to do good, to make things just a little better, to give a voice to people who need to be heard.
What better way to do that than help children. So in my early days in the Senate I worked with former Senator Landon Pearson, who was the leader in the Senate on children’s issues. I got involved with Special Olympics because I love sport and I love kids, and I have a very personal reason, a son I lost many years ago, who had Down Syndrome, who was my Special Olympian.
And then one day I was walking across Parliament Hill, coming from or going to committee, or going to Question Period, feeling fed up and frustrated with politics as usual.
I don’t know how many of you have been on Parliament Hill, but protesters are a pretty common sight for all kinds of issues. The signs and the shouting can become just part of the scenery when you work there. But this day, a different kind of protestor caught my eye.
He was a man in a suit, who looked just like a bureaucrat, walking back and forth with a sandwich board. I can’t remember exactly what it said, something about action for autism. He was all by himself — a lonely protestor on his lunch hour, taking a break from his job in the public service.
As some of you know, before I became a senator, I was a television reporter and I haven’t lost any of the curiosity that got me into that line of work in the first place. I asked him his name, Andrew Kavchak, and what he was doing. He talked to me about his son, a little boy languishing on a waiting list. He told me about the stress and frustration of not being able to ensure that his son get the help he needed to break out of the silence and isolation of autistic world.
That meeting changed my life. I said good-bye and walked back to my office and announced to my staff that I had found a cause I would fight for in the Senate and that cause was families affected by autism.
Since I made that decision, I have travelled, I have met people, I have given speeches about autism. In the Senate I made speeches and launched an inquiry into autism and its effects on Canadian families. The Senate Committee on Social Affairs, Science and Technology undertook a study and met with witnesses to learn more about autism, including treatment and research. Our Report, Pay Now or Pay Later – Autism Families in Crisis brought to the attention of government the plight of Canadian families and children with autism who are scrambling to get the care and treatment they need.
Now I don’t think I need to go into the details of this report. Many of you here now better than anyone about the huge sacrifices families are making to buy treatment for their kids. The stress is tremendous. Our report’s title said it all: families are in crisis.
I was proud of this report the day we released it. I remembered my walk across Parliament Hill and how a chance encounter with a lonely protestor on his lunch break led to this moment. I had done what I promised to do when I became a Senator. I had done what my father would have expected me to do: I did good.
Then we had to wait for the government’s response. The cynical reporter part of me thought, the government won’t do anything. They’ll say that autism, as a health and education issue, is part of provincial jurisdiction and the feds can’t touch it. Then the naïve part of me, the hopeful part of me said, well, here’s a government with a huge surplus that has a bit of an image problem. I don’t think I’m being partisan by saying that some people perceive Prime Minister Harper as being cold and calculating. So I thought, maybe this government will take this report, take$14 billion surplus, and see an opportunity to earn some warm and fuzzy points, to be seen as a government that takes care of its neediest citizens.
Well, I think you can guess that my inner cynic had the last laugh when it came to the government response which came several months later.
News flash! In response to a growing crisis that is affecting one in 150 North American families, Canada’s government sees itself as a quote “facilitator of enhanced evidence” end quote.
Ladies and gentlemen. Tell me. Tell me now. Do you need evidence that autism is a problem?
Do you need enhanced evidence?
Do you need a government that facilitates enhanced evidence?
I didn’t think so.
And so our struggle continues.
Last week I met another lonely protestor. Another Dad who just couldn’t take it anymore. Stefan Marinoiu has three kids. His middle child, Simon, is 15 and has autism. I’m sorry to say, Simon’s story is all too familiar. After years of being on a waiting list for treatment, Simon and his parents were told that, at 15, he is too old for treatment. Too bad. So Sad.
Stefan looked for other sources of help and all he found were closed doors. Frustrated and angry, at the beginning of the new year he opened his front door and decided to take a walk. A walk that took him all the way from Toronto to Ottawa. His sandwich board didn’t do much to keep him warm while he walked through snow storms, glacial winds, and freezing temperatures. But his determination to get to Ottawa and be heard kept him going.
It was my pleasure and honour to meet him on Parliament Hill at the Centennial Flame when his walk came to an end.
He wanted to meet with Health Minister Tony Clement. The cynic in me thought that there was little chance of that happening. But I’m happy to report that I was wrong. Minister Clement did indeed meet with Mr. Marinoiu.
I am sorry to say that Minister Clement stuck to his position that government should be the quote facilitator of enhanced evidence end quote. He told Mr. Marinoiu all about what the government has done. How it has developed a national website and how it has created a research chair position at Simon Fraser University and how it needs to gather more information about autism.
When Mr. Marinoiu talked about the need for funding and access to therapy across all provinces, about the need for support for all autistic individuals, no matter their age, about the need for training in autism behavioural therapy, he was told that health and education were matters of provincial jurisdiction. So in essence, he was told, “Thanks for showing up, Mr. Marinoiu, but autism isn’t our department.”
As I said at the beginning of this speech, it’s been just over three years since I’ve been a Senator and I have learned a few things during this time. One important thing I have learned is patience. Another important thing I have learned is persistence. Now I can tell you that patience is not something I’m very good at. But persistence is my middle name.
I can promise you that I will continue to talk about autism, to fight for families with autism, and ensure that my political colleagues, in the Senate, the House of Commons, and 24 Sussex know that autism is an issue that affects 1 in 150 Canadian families. It’s a problem that’s growing. And it’s a problem that deserves a better response than, “that’s not my department.”
I’ve said it before, and I’ll say it again, when it comes to autism, the jurisdictional shell game has to stop. Autism is a Canadian problem that needs a Canadian solution. A family with autism in PEI shouldn’t have to think about moving to Alberta because there is better care there. We need homegrown solutions to autism that are delivered just where we are, in our homes.