Published by Senator Jim Munson on 12 April 2007
It's not unusual to see people on Parliament Hill with signs and posters advocating one issue or another. But something about Andrew Kavchak was different. He was stressed, he was anxious and he had a personal story to tell. His son is autistic.
It breaks your heart to listen to what is a personal crisis for the Kavchak family and to what has become a crisis from coast to coast to coast. For thousands of families across this country, the impact of this neurological condition has been devastating.
In the Senate, we launched a study through the Standing Committee on Social Affairs, Science and Technology. We heard from 53 witnesses, including autistic individuals, parents of autistic children, advocacy groups, health professionals, autism researchers and federal department representatives, as well as one provincial minister.
Autism is a complex, lifelong, developmental disability on the rise in Canada where it affects one in 166 people. It is three to four times more likely to affect boys than girls.
Autism affects people in different ways. On one end of the spectrum, people are isolated by compulsive behaviours and speech disorders. Others are able to participate in society with varying degrees of support. People with autism are often closed off from their family, friends, teachers, neighbours and society as a whole. Research offers lots of possible reasons why the number of people affected is growing, but there is no cure.
Canada has a patchwork approach to autism treatment and support. Services vary from province to province, and funding for such services depends on provincial policies and budgets. Treatment for autism can be very expensive, up to $60,000 annually for IBI (intensive behavioural intervention).
Many families are facing financial crises to ensure their children obtain treatment. It requires a multidisciplinary team: medical practitioners, psychologists, psychiatrists, speech-language pathologists, occupational therapists and special-education providers all have a vital role to play in the treatment of autism.
WE MUST DO MORE
Families are on their own in Canada to obtain information, services, support and treatment for autism. It's clear that we must do more as a society. Without treatment and support, we lose the potential contributions that people with autism can make.
In many cases, without treatment, people with autism are institutionalized at a huge cost to society.
Parents shouldn't have to move from province to province to find the best treatment for service.
Parents shouldn't have to live on the edge of a breakup because of the stress in bringing up an autistic child.
Parents shouldn't have to sell or re-mortgage their homes to pay for costly treatment.
In its final report on the Inquiry on Funding for the Treatment of Autism, Pay Now or Pay Later: Autism Families in Crisis, released this week, senators make it clear that the federal government must implement a national autism strategy, in collaboration with the provinces and territories.
What is needed is a level playing field where everyone has equal access to equal services. The committee is encouraged by recent steps taken by the federal government to address autism concerns and supports the stakeholder symposium on autism announced for 2007. However, plans need to be more specific.
Yes, treatment is expensive. But as one witness said, "If you pay for it now, look at the return you will get on your investment. The people with autism will get out in the real world and get jobs, and that will stimulate the economy. Or you can pay later, which means they will go into group homes and it will cost the taxpayers a lot more in the long run to keep them there."
There is no need for families to face autism alone. We are a rich country with budget surpluses. And despite our resources, our response to autism has led to each province having a different prescription in dealing with the issue. We must get our acts together.
We owe it to these families, to society and to ourselves to share not only the burden of autism, but also the collective responsibility to act.
Jim Munson is a member of the Senate of Canada. This column first appeared in the Ottawa Citizen.