NOTES FOR REMARKS BY SENATOR JIM MUNSON ON FUNDING FOR THE TREATMENT OF AUTISM

Inquiry—Debate Adjourned

Hon. Jim Munson rose pursuant to notice of April 27, 2006:

That he will call the attention of the Senate to the issue of funding for the treatment of autism.

He said: Honourable senators, there is an urgent health issue in this country and that issue is autism. The Autism Society of Canada estimates that the number of children with autism has grown by more than 150 per cent in the last six years and now affects one in 200 children. Autism affects people in different ways, isolating its sufferers with compulsive behaviours and speech disorders that close people off from their family, friends, teachers, neighbours and society as a whole.

Researchers studying the brains of people with autism see similarities to other conditions such as Alzheimer’s, Parkinson’s and Lou Gehrig’s Disease. Treatment can make dramatic differences in the lives of people with autism, especially in the early years. The sad fact is that too many children in Canada do not have access to the treatment they need. Across this country, parents are scrambling to find health and social services to help their children break the neurological barrier that prevents them from participating fully in school, family and community. These people are slipping through the mesh of our social safety net. Canada is letting them down and we must take action.

It is heartbreaking to see what is happening to families with autistic children. Two bills have been introduced in the other place that will commit the government of this country to take action to help people with autism and their families. These are Bill C-211, an act to amend the Canada Health Act, and Bill C-212, an act respecting a Canadian Autism Day. I call upon senators to support these bills when presented in this chamber so that we can be part of a national solution to this devastating disorder and part of increasing Canadians’ awareness of autism and its affects on individuals, families and communities.

Not long ago, a generation or two, autism was considered to be a psychiatric response to parents, especially mothers who were cold or not loving enough. We have changed our views, thank goodness for that. However, autism remains a mystery in many ways. We do not know what causes it. We do not know how to cure it. We do not know why the number of children suffering from it is growing. We do not have consensus on what constitutes adequate or appropriate treatment, and we certainly do not know how to pay for autism treatment.

I recently stood in the rain on Parliament Hill with representatives from every political party. We stood united in our support for the children and families of people with autism. We need to remember that autism has far-reaching impacts on families — just ask young Joshua Bortolotti.

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Two years ago, his sister Sophia was diagnosed with autism spectrum disorder and this big brother, only 12 years of age at the time, presented me with a petition calling for access to treatment for his little sister.

Many have claimed that intensive behavioural intervention, IBI, is the best treatment for children with autism. It is a painstaking, expensive treatment that requires full-time individual therapy for children at a young age.

Success stories exist. In one study, with an average of 40 hours per week of one-on-one treatment for two or more years, almost one-half of the children recover to the point of being indistinguishable from their normally developing peers. The cost of intensive behaviour intervention is between $50,000 and $120,000 a year, depending on the severity of a child’s condition.

Most provinces pay for the treatment up to a certain amount. British Columbia and New Brunswick, for example, pay up to $20,000 a year, not even one-half of the cost of treatment for the child who needs the least amount of treatment. In Ontario and Quebec, treatment is limited to children under six and waiting lists are so long that many children reach their sixth birthday before having access to treatment.

Recent news reports have referred to Alberta as the best province for autism service. How fortunate for Albertans.

What does this mean for the rest of Canadians? It could mean pulling up stakes and moving to Alberta, or it could mean selling your home and taking on a huge debt to buy the care that your children need. Parents are going broke. Why are parents being penalized? Where is the universality in health care of which Canadians are so proud? It is not to be found if you have a child with autism.

The Canada Health Act does not specify autism treatment as an insured health service. This means that access to treatment depends on where you live. This is shocking to most Canadians. We believe that people who are ill should get the treatment they need.

We must recognize autism for the health problem it is, one that is urgent and demanding of our immediate action. Autism knows no borders.

The Canadian Institutes for Health Research devotes between $16 million and $18 million to autism-related research. This includes genetic research, health services research and research concerning appropriate support for families. We do not have a national strategy for autism. We do not have a plan to link policy and research. We have to learn more about which treatment works best for whom and in which setting.

It is time for the Government of Canada to show leadership in the same way leadership has been shown with Canada’s drug strategy and diabetes strategy. We need an autism spectrum disorder strategy.

There is no doubt that intensive behavioural intervention treatment is expensive, and shockingly so. In fact, if only one-half of Canadians diagnosed with autism received and IBI treatment at $20,000 a year, our annual public health care spending would increase by $700 million.

However, honourable senators, we need to act. Nine out of 10 children who do not receive the treatment they need are institutionalized. This is a huge cost to our society and a tragic loss of potential. Think about it, senators. If these children had cancer, would we not act? Would we debate whether they were deserving of chemotherapy, whether our society had responsibility to treat these children? No, we would not deny this treatment.

The numbers involved — both the growing numbers of children and families affected by autism and the costs associated with treatment — demand that we pay attention and take action. I know that my honourable colleagues Senators Kirby and Keon have been studying mental health issues and consulting with Canadians, including people with autism and their families. I commend this important work.

Allow me to quote directly from the latest report of the Standing Senate Committee on Social Affairs, Science and Technology’s as follows:

The Committee recognizes that family caregivers are struggling to provide the best care possible for persons living with autism. Their emotional and financial hardships are very real, and a solution must be found. However, we do not believe the Committee is well placed to make recommendations at this time. Further study is required if we are to do justice to this extraordinarily complex issue…

Canada’s most vulnerable children are falling through the mesh of our social safety net. Every province has a different approach. This patchwork approach to autism in Canada is ineffective and, in some ways, demeaning. We know that autism is a neurological disorder — a health problem. It is time we recognize that autism treatment is an essential health care service that should be funded through our health care system.

The federal government has shown leadership over the last few years. We have supported several community-based initiatives to help children and families including the Aboriginal Head Start program, the Canada Prenatal Nutrition Program and the Community Action Program for Children. All these programs put money where it is needed — helping children and families. We need to do the same for autism.

We need a strategy to link policy and research to treatment and services. We must then make a commitment to act. We need to do more than just say that we care about children and families with autism. We must show that we care. Let us have a national strategy to address autism.

I would hope that after reasonable debate here — and I do not mean in 15 years when I will be 75 — we can move this inquiry to the appropriate committee for further study and recommendations in order to do something for these children. No child in this country should be left behind.

Hon. Wilbert J. Keon: I wish to commend Senator Munson for what he has just said.

I have not had the time to look at this issue in depth, but I and other honourable members of the Standing Senate Committee on Social Affairs, Science and Technology have reviewed it to an extent. It is such an enormously complex subject that transcends so many disciplines that we did not quite know what to do with it.

Although this would require much more research, my immediate reaction is that we should probably approach it as the British have and define it as an entity unto itself that requires input from many departments and government.

When we conclude debate on this item in the chamber, will Senator Munson be recommending a study of this subject as a stand-alone entity that requires the resources of health care, education and social services rather than in the context of health care, education and social services themselves?

Senator Munson: Yes, honourable senator, I think it deserves that recommendation. I also think it deserves to be put on the agenda of the Minister of Health so that borders disappear with regard to autism. I am hoping that after a very short debate here, I can move a motion to move it to the Standing Senate Committee on Social Affairs, Science and Technology as a stand-alone entity and that committee can come up with new and innovative ideas for treating this condition. The treatment must be equitable all across the country as it is with diabetes and other diseases.

I spoke briefly about this situation when I came here two and one half years ago. Since that time, the children who were four years old are now six and a half, and it may be too late. It is the same as with everything in life. If we capture the child now with the proper treatment, on the financial side, we will save millions of dollars because, instead of being institutionalized, these children will participate in our society.

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For the relief of these families for helping others, we have a commitment at this time from your committee to go full steam ahead in dealing with this issue.

Hon. Anne C. Cools: I would like to thank Senator Munson for bringing forward this issue for debate. This question should have been asked a long time ago.

I listened with some care to Senator Munson’s statements, and I understand that autism is a condition that has been shrouded in mystery and a lot of misunderstanding for quite some time. Perhaps when Senator Munson closes the debate he could give us a more ample description of the challenges, the difficulties and the problems that autistic children and their parents face in life. I wonder if he would consider putting more substantive detail on the record.

Senator Munson: I certainly will consider that. I am new at this, but I know one thing: Its incidence was one in a thousand just a few years ago; now it is one in 200. I understand it is becoming 1 in 175. It is a mystery. Why is it happening? We must get to the bottom of that question, and I would be pleased to share all the information I have. I believe we need to step beyond this chamber into our committees and have the people and the experts come forward to say how to do it. We must have the will of governments to tear down these borders. Whether you are in St. John’s or Victoria, you must get the same treatment, or be offered the same treatment.

On motion of Senator Mercer, debate adjourned.