The Toronto Star

Autism Fighting for funding

Susan Sherring

Autism Fighting for funding

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Sen. Jim Munson knows all too well about the feelings of alienation when your child doesn’t fit the mold.

As the father of a boy born with Down syndrome, Munson says he understands the frustration felt by parents of children diagnosed with autism. Munson’s son, Timothy, who died before reaching his first birthday almost 40 years ago, is part of the impetus for the former national television reporter, now senator, to push for the Senate Report on Autism.

Munson is tired of the turf wars over who is responsible for funding of treatment.

“As a nation, we have to take a look at all of this. We have an obligation as a society. For families with an autistic child, this is extremely expensive. You’ve got families breaking up, mortgaging their homes. I’m tired of the jurisdictional shell game,” he said.

“The bottom line is we have to put it all on the table. If we don’t, how are we ever going to have a national program? People are scrambling to get treatments for their sons and daughters.”

It was one day on Parliament Hill back in Sept. 2004 when Munson first encountered Andrew Kavchak with a sandwich board around his neck.

Kavchak told him his story about his autistic child and his struggles for government-funded treatment

For Munson, it was a story that resonated.

“I cried with him. As a nation, we have to take a look at it, we have an obligation as a society. We have to do this for moral and financial reasons,” Munson said, explaining how the concept of the senate inquiry, Pay Now or Pay Later, came about.

“I know what this is like, these kids will get institutionalized like the Down syndrome children of the ’50s and ’60s,” Munson said.

Kavchak took to wearing his sandwich board after his son Steve was diagnosed at the age of two, but couldn’t get treatment. He was told he was on a waiting list with the recommendation he seek private treatment.

“It was devastating for us,” he said, adding they spent about $40,000 the first year alone.

“I remember very clearly one day I saw Sen. Munson walk by the Centennial Flame. He was very kind and I asked him to help. To my great satisfaction he listened.

“Sen. Munson has been our angel on the Hill,” Kavchak said.

The report, released earlier this year, calls for a national autism strategy, dealing with a wide variety of issues — everything from the undue financial burden often placed on parents to treatment and research.

“No matter how a National Autism Strategy is structured, witnesses were clear that individuals with ASD must be included in the consultation and play a role within the strategy itself, that it receive adequate ongoing funding, that it span the lifetime of affected individuals and that it strive to achieve consistency across the country in terms of information dissemination, assessment, treatments and supports,” the report reads.

As the title of the report suggests — Pay Now or Pay Later: Autism Families in Crisis — there is a high price to pay if the needs of autistic children are ignored.

“The committee fully supports the view expressed by families with autistic children and autistic individuals themselves that governments must pay now; otherwise, they will pay later. We believe that the latter is simply not an option.”

Recently, the Conservative government responded to the report, but the response is not nearly good enough for either Kavchak or Munson.

The response is more a regurgitation of what the federal government now does than a sign it’s willing to adopt the recommendations of the Senate report. And the government doesn’t suggest it will lead the way in forming a national strategy.

While it promises more research, it falls short of what was hoped for. One example: “As identified by the Senate Committee, there is a lack of consensus and evidence on ASD issues. Accordingly, governments do not yet know enough about ASD and its treatments to implement effective and well-informed strategies that would lead to meaningful outcomes,” the response, released last month, reads.

But Munson said he won’t stop pushing for what he believes in.

“We have to get together in one room- — families, scientists, researchers, politicians , and close the door. Right now, we’ve got our heads stuck in the sand. This is too important, it’s a crisis.

“We owe it to these people … I have found a place and I use the motivation of our son to fight for families who have children with autism.”

HIGHLIGHTS

Recommendations from the Standing Senate Committee report entitled: Pay Now or Pay Later — Autism Families in Crisis

– The federal government establish a comprehensive National Autism Spectrum Disorder (ASD) Strategy.

– The federal government convene a federal/provincial/territorial ministerial conference to examine innovative funding arrangements for the purpose of financing autism therapy.

– The conference identify measures of accountability in the use of federal funds for autism treatment.

– The conference also define the feasibility of introducing measures such as supports for caregivers, including respite, family training and assistance, assisted living support as well as career and vocational training.

– Health Canada, in consultation with autistic individuals and other stakeholders, implement a national public awareness campaign.

– The federal government create an Autism Research Network — and provides substantial new funding for this — to work collaboratively with all stakeholders to develop an agenda.

– The federal government work collaboratively with the provinces and territories to address the human resource issues including training standards and inter-provincial mobility in the field of ASD.

– The federal government, in implementing the recommendations of the Minister of Finances Expert Panel on Financial Security for Children with Severe Disabilities, ensure that autism qualifies as an eligible disability.

– The Department of Finance and the Revenue Canada Agency study the implications of income splitting for ASD families and issue a report to the Minister of Finance by June 2008