Parents Lobby Swing Ridings in Autism Fight

Parents of children with autism have been fighting over a decade to have costly treatment covered by Medicare. Now they are using strategic election lobbying in swing ridings to further their cause.

Activist group Medicare for Autism Now has launched a campaign called “The Two Percent Solution” in 14 swing ridings across the country where candidates won by two per cent or less. They are backing any candidate who publicly supports legislation to amend the Canada Health Act to include autism treatment.

Among the 14 constituencies is Parry Sound-Muskoka where federal Health Minister Tony Clement won by a mere 21 votes. Because these ridings are vulnerable, says the group, their initiative has a good chance of success.

“What we want to do is get some federal leadership on the issue of autism. No party has stepped up to the plate so we’ve got this non-partisan initiative going on in the upcoming federal election,” says Louise Witt, a parent activist and Surrey, B.C., campaign coordinator with the group.

Witt’s 4-year-old son, Jack, was diagnosed with the developmental disability when he was two. That’s when Witt became active.

“I didn’t have a political bone in my body until I realized the discrimination that children with autism were faced with in this country,” she says, calling these children “the orphans of the health care system.”

The group, along with Families for Early Autism Treatment (FEAT), has been calling on Ottawa to work with the provinces to set a national standard for autism treatment and amend the Canada Health Act so that an intensive treatment called Applied Behaviour Analysis (ABA) can be covered by Medicare.

“It’s expensive, and politicians talk a lot about that but they certainly don’t talk about how expensive in might be to treat a child who has cancer or diabetes, for example. So I don’t understand why it is acceptable to put a price tag on treatment for children with autism.”

ABA includes one-on-one time with trained professionals and is most effective when implemented between the ages of two and five. It has been shown to have a dramatic effect on children with autism, and Witt’s son is no exception.

“He never spoke, not a single word, until he went in ABA treatment and he spoke his very first word on his very first day of therapy. I knew right then that this was a powerful kind of treatment. He now talks in sentences, he wants to socialize with children, he can tell me what his wishes are, if he’s hungry or if he’s hurt, and if I didn’t see such amazing results I wouldn’t feel as passionate about this.”

However, the treatment can cost up to $60,000 a year, and there lies the rub — the provinces say it’s too expensive.

“It’s expensive, and politicians talk a lot about that but they certainly don’t talk about how expensive in might be to treat a child who has cancer or diabetes, for example. So I don’t understand why it is acceptable to put a price tag on treatment for children with autism,” Witt says.

Currently, a patchwork of autism services are provided through social services ministries across the country, with some, like B.C. and Alberta, paying a portion of ABA costs.

But it’s not enough, say parents, some of whom have more than one child with autism and have been crippled by debt as they struggle to provide what they believe is the best treatment for their children.

There have been several lawsuits in various provinces over the years in an effort to resolve the issue. In the landmark Auten case in British Columbia, the court declared that Early Intensive Behavioural Therapy or ABA is a “medically necessary” service and must be funded by the government.

However the province appealed, and the Supreme Court of Canada overturned that judgement in 2004.

While Health Minister Clement was not available for an interview for this story, the Ministry of Health has stated that the issue must be addressed by the provinces and territories since it’s their responsibility to deliver health care.

But after children with autism become non-coping adults who must be institutionalized, it’s the Ministry of Health that foots the bill. FEAT and others say it’s inconsistent that the ministry not be responsible for funding early treatment that can help these children before they become a drain on the system.

Liberal Senator Jim Munson, who supports a national strategy for autism treatment, was part of a Senate committee that produced a report earlier this year called “Pay Now or Pay Later: Autism Families in Crisis.” However, the report never went before Parliament for a vote.

Munson says it’s time politicians began “thinking outside the box” because families of children with autism are in crisis.

“The stress is so much on families that couples are splitting up, families are borrowing money that they can’t afford and mortgaging their homes to provide their children with treatment, and from my perspective as a Senator I find that tragic.”

Beverley Sharpe, a volunteer with Medicare for Autism Now, is keenly aware of what Munson means.

Soon after her child, Allison, was diagnosed with autism when she was almost three, Sharpe’s husband walked out. After doing extensive research, Sharpe was convinced that ABA was the only therapy that could help her daughter.

In order to meet the “huge bills” that started pouring in after she began the ABA treatment, Sharpe opened a line of credit, worked overtime, cashed in her RSPs, pawned anything of value and slept on her living room floor so that she could rent out her bedroom.

It all paid off, and Allison, now 14 and a grade 9 student, is able to look after herself and “has blossomed into a lovely member of the household.”

A litigant in the Auten case, Sharpe says two studies accepted by the court showed that it costs $1.1 million to pay for the long term care of untreated autistic individuals — 10 times the amount it costs to provide ABA treatment. A recent federal government study found that autism, which is on the rise, costs the economy about $1 billion a year.

“It’s a pretty lonely existence being an untreated autistic person and institutionalization is not a dignified existence. We do not have a society where we write people off for any disability except if you’re autistic,” says Sharpe.

But this issue is not peculiar to just Canada. According to FEAT’s website, parents in many countries are suing their local, state/provincial or federal governments to make ABA accessible to their children through public funding.

In the U.S., where most of the legal battles — and gains — have occurred, presidential hopefuls John McCain and Barack Obama have both said they support the Combating Autism Act which was unanimously passed and has almost $1 billion dollars going toward treatment and research.

In Canada, a private member’s bill tabled by NDP MP Shawn Murphy proposing amending the Health Act to ensure government funding for ABA was supported by both the Liberals and the NDP. But the Conservatives and the Bloc Quebecois voted it down.

However, Harold Doherty, whose son, Conor, suffers from autism, says the fact that so many MPs supported the bill bodes well for the future in advocating for the measures proposed by Murphy.

Thanks to the efforts of Doherty and other parents, New Brunswick now has funding for 20 hours per week of ABA treatment and provides training for autism support workers and teacher assistants. But without ABA being covered by Medicare, says Doherty, there’s always the risk that these hard-won gains could be lost at any time.

“We need serious commitments of funding for autism treatment across Canada and that’s what we’re not getting.”

For more information on the Two Percent Solution campaign, visit www.medicareforautismnow.org Last Updated
Sep 24, 2008

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