[Andrew Kavchak]

Hi Folks,
From the Toronto Star…

Dec. 13, 2004.
Parents heading to court over autism

IAN URQUHART

Undaunted by their recent loss at the Supreme Court of Canada, parents of autistic children are carrying their fight with the provincial government to another front.

The Supreme Court ruled last month that the provinces do not have an obligation to pay for treatment of autistic kids under public health care plans.

But a group of Ontario parents last week has launched a class-action suit claiming that the province is obliged to provide an education for autistic kids under both the Education Act, which guarantees access to public schools, and the Charter of Rights, which calls for equal treatment under the law.

It's a different line of attack and it may just succeed.

At issue is the government policy that cuts off public funding for intensive therapy for autistic children once they reach age 6, or school age.

When he was leader of the opposition, Dalton McGuinty called the age 6 cut-off "unfair and discriminatory" and promised to end it.

But now that he is Premier, the situation, as with so much in government, appears more complicated and the Liberal government has not exactly followed through on McGuinty's promise.

The Liberals have doubled spending on autism — from $40 million to $80 million. But for children age 6 and over, the new money will go toward hiring autism consultants whose job will be to train principals, teachers and educational assistants.

The government is not providing for the sort of one-on-one intervention in the classroom that many parents believe their children need.

Hence, these parents have taken their kids out of the schools and are paying more than $50,000 a year out of their own pockets for such instruction, either at home or in a private school.

What is going on here? Why have two successive governments — one Conservative, the other a supposedly more child-friendly Liberal regime — chosen to draw the line at age 6?

The easy assumption is that this is a purely financial issue. With an estimated 10,000 autistic kids in the province, it would cost the government hundreds of millions of dollars to provide intensive treatment for them all.

But in an interview last week, Marie Bountrogianni, Minister of Children and Youth Services, denied that money is at the root of the dispute. Rather, she suggested it is a philosophical dispute over the best way to deal with autistic children.

Bountrogianni, herself a former school psychologist who is knowledgeable about autism, said she appointed an expert panel and asked it to recommend the best approach, regardless of the cost.

"Their advice to me was that definitely IBI therapy is excellent therapy for some children with autism, not for all," she said. "The earlier the better.

"And then, once they are at school, they need to practise the skills that they established with IBI, those that qualified for it, and then they can apply it to a school situation, because it's an unreal situation to have a therapist constantly interacting with you while you are in school."

Bountrogianni noted that there are more than 8,000 autistic kids in the public school system right now.

But many parents of autistic children find the public school environment hostile. One parent says her son was kept in a broom closet all day. Others report that their kids are often being suspended for behavioural problems.

Len Levin, an American autism expert, tells an interesting story. He moved to Toronto in 2001 to try to bring a "state-of-the-art autism service" into our schools.

"I encountered obstacles every step of the way," he says. "The schools refused to work with my agency in any meaningful way, using arbitrary arguments such as treatment vs. education.

"We were optimistic with the change in provincial government last year, only to be stonewalled just as badly once the Liberals took office."

Levin has moved back to the United States, which, he says, offers much better support for autistic children in the schools.

"I had had enough," he explains. "I love Canada and Ontario and have great respect for the diversity and commitment to social principles that one sees on a daily basis, but the reality is that Ontario is the equivalent of a Third World country when it comes to special education in the schools, especially when it comes to educating students with autism."

But Bountrogianni is adamant. "All I know is that this is what I was told was the best way to tackle this challenge," she said.

To which the parents are saying: See you in court.

Ian Urquhart writes on provincial affairs. His column appears Monday, Wednesday and Saturday. iurquha@thestar.ca.

[Andrew Kavchak]

Hi Folks,
Please see below the Hansard transcript from the House of Commons for Thursday, December 9, 2004. One of the MPs, Tony Martin, who joined Scott Reid, I and a few other parents in the foyer of the House of Commons to have a press scrum regarding the autism petition back on November 23, tabled a set of petitions yesterday in the House. Please note the exchange with the Speaker. Mr. Martin added his editorial comment that he supported the petition at the end and it is now on the official record, notwithstanding the Speaker's subsequent comments. Let's all send Mr. Tony Martin messages of thanks for his tabling of the petition and expression of support!
His email is: Martin.T@parl.gc.ca
Thank you!
Andrew (Ottawa)

House of Commons Hansard, December 9, 2004.

Petitions
Autism

Mr. Tony Martin (Sault Ste. Marie, NDP): Mr. Speaker, I beg leave to present a petition on behalf of over 40 of my constituents who are concerned about the disorder of autism in Canada. They are asking that IBI and ABA be covered under the Canada Health Act and that a chair be set up at a post-secondary institution to teach in this discipline. I support this petition myself.

The Speaker: The Speaker must say that it is not normal procedure for an hon. member to indicate his support for a petition.

I hope the hon. member for Sault Ste. Marie the next time he presents a petition will refrain from an indication of his support for it, because members are not supposed to indicate that they support or oppose the petitions they present. I know this may be the first time the hon. member has done that, but I hope he is watching the good example set by other hon. members who refrain from such comments.

[Andrew Kavchak]

Hi Folks,
For those of you who did not catch it, the CTV Canada AM TV show had a poll the other day where people could vote about whether ABA treatment for autistic kids should be publicly funded. The result? The final result was 70% said yes with a total of over 3000 votes in!
Thanks to everyone who registered your votes online.
Cheers!
Andrew

[Andrew Kavchak]

Attention! Attention!

CTV's Canada AM is conducting a poll today on ABA funding for children with autism. Here is the link- please vote and pass this on.

http://www.ctv.ca/canadaam

[Andrew Kavchak]

Autism seminar offers advice
Windsor Star
Dec 6, 2004
Page: A3
Section: News
Edition: Final
Byline: Don Lajoie

Overwhelmed, under-supported and poorly informed.

That's the natural state of being for parents struggling with the challenges of raising autistic children, say Maureen Bennie and Joyce Lang, of the Autism Awareness Centre.

Bennie and Lang were in Windsor Saturday for a conference at the Hilton Hotel on living with autism. About 50 delegates took part in the seminars designed to help parents better understand and communicate with their kids.

"Parents are often overwhelmed when their child is diagnosed. They don't know where to turn. We're there to help," said Bennie, the mother of two autistic children.

DIFFERENCES HUGE

Bennie said the federal government should intervene at the provincial level because the differences in programs from province to province can be huge. For example, she said, a family with an autistic child in Alberta may get up to $25,000 a year to help pay for ongoing care and on-site therapy. But in Ontario, a family in similar circumstances may count on about $2,500.

"Why do people in Ontario get so much less? Why do people in British Columbia get less?" said Lang. "The problem is the kids have been underfunded in every province for so long that everyone is playing catch-up. But are the provinces putting money into the right areas?"

She said one in 200 Canadian children is affected by autism, an increase of 600 per cent in 10 years. Autism, which affects communication, social interaction and behaviour, is now considered the most common neurological disorder affecting children.

[Andrew Kavchak]

Positive outlook
Saskatoon StarPheonix
Dec 6, 2004
Page: B4
Section: Lifestyle
Edition: Final
Byline: Silas Polkinghorne

At just 17 years of age, Zack Murdock knows exactly what he wants to do with his life.

"I'd like to be dealing with kids with certain disabilities," said the Grade 12 student at Bishop Murray High School.

Murdock wants to work with children with autism, mental disabilities, as well as cerebral palsy, a condition that has affected Murdock.

"I feel that I can relate to them," said Murdock, who is also epileptic. "Growing up as a kid was difficult and challenging," he said.

Cerebral palsy partially paralyzed the left side of Murdock's body and restricted the use of his left arm and leg.

"I found it very difficult [growing up] because I wasn't like the other kids," Murdock explained. "I'm not going to be like you, I'm not going to be like the other person."

He also volunteers at with autistic kids at Autism Treatment Services in Saskatoon.

"I think that they're people that show the good in others," he said. "They're always filled with happiness and joy."

Each week he is partnered with a different child and they take part in activities like mini-golf, decorating t-shirts or making tortillas.

Mordock said more programs for kids with disabilities would have been helpful for him growing up.

He has his sights set on a career, and considers himself a romantic who wants to find that special someone.

But Murdock hasn't always had things figured out.

He began his high school career at Holy Cross, but he was having trouble both academically and socially.

"I felt I didn't belong," said Murdock.

He says switching schools changed his life. Murdock needed the support available from both staff and students at Bishop Murray, he said.

"This school has been a turning point in my life," Murdock said. "Everybody here deserves the opportunity to have respect," he added. "That's what I try to give."

Murdock said the school's zero tolerance policy helps make it a welcoming place.

His experience at Bishop Murray has given Murdock an optimistic, even inspiring outlook on life.

"I don't want to take happiness for granted. I don't want to lose one second," he said. "Life is a gift, and it's not worth wasting over being angry or upset."

Murdock also credits his stepfather, Garry Hamblin, for helping him through the tough times.

"He always pushed me to do the best I can do," he said.

Murdock hopes to enroll at SIAST after graduation and study child care.

[Andrew Kavchak]

Legislature responsible for social policy
Times Colonist, The (Victoria)
Dec 6, 2004 1:00
Page: A11
Section: Comment
Edition: Final
Byline: Eleonore Beyer

Re: "Treatment for autism not a right," Nov. 20.

B.C. Attorney General Geoff Plant is reported as stating that governments (and not courts) are clearly responsible for social policy decisions.

I beg to differ. Social policy decisions, as all other public policy decisions, are not the responsibility of any government, but rather of our legislative assemblies. Public policy is debated and legislated by our Canadian Parliament and our provincial legislatures. The role of government is to implement and enforce the legislation enacted by our elected lawmakers.

While it is true that usually the governing party holds the majority of seats in our legislative assemblies, and thereby wields considerable influence in the legislative process, it is not always so — there are minority governments. Also, our opposition parties and independent members of the legislature have an important role to play in the legislative process.

It is this division of power between an elected legislature on one hand and a government on the other that makes democracy work.

I find it very sad that our attorney general, the top adviser to government on law-related matters, either is not aware of this distinction or doesn't find it worth remembering.

Eleonore Beyer,

Victoria.

[Andrew Kavchak]

Congratulations to those who delivered the autism petition to James Lunney MP. The following passage appears from the House of Commons Hansard transcripts for Friday, December 3, 2004.

Mr. James Lunney (Nanaimo—Alberni, CPC): Mr. Speaker, the second petition deals with the subject of autism. The petitioners, again largely from my riding, are calling on Parliament to recognize that families with children suffering from autism spectrum disorder are greatly affected and highly vulnerable. They talk about the alarming increase in the diagnosis and presence of autism in our population, currently at about 1 in 195 children. They draw attention to the therapy which has been made available largely through the United States, intensive behavioural intervention, IBI, and also applied behavioural analysis. These programs are taught in the United States and currently not taught in Canada. They are quite expensive. The petitioners are calling for these programs to be taught and to be available in Canada.

[Andrew Kavchak]

Hi Folks,
Things are picking up on the litigation front again, albeit with a different approach. Please note the reference to the petition at the end of the news story.
Andrew (Ottawa)

Sunday, December 5th, 2004
Ontario parents to launch new autism lawsuit
Mary Nersessian, Mary Nersessian, Mary Nersessian, CTV.ca News Staff

There is a glimmer of hope for families with autistic children who were devastated by the Supreme Court's recent decision ruling that provinces are not obliged to fund treatments not covered by the Canada Health Act.

Canadian families with autistic children plan to announce a new legal challenge arguing that an expensive treatment is an educational necessity, not a medical one, experts say.

Now that the ruling has been announced, the door is open for a new lawsuit to be launched, one that could argue that Applied Behavioural Analysis should be funded by the educational system as it is in the United States, experts say.

"The Canada Health Act and the relevant British Columbia legislation do not promise that any Canadian will receive funding for all medically required treatment," Chief Justice Beverley McLachlin wrote in the Supreme Court's decision last month.

"All that is conferred is core funding for services delivered by medical practitioners and, at the province's discretion, funding or partial funding for non-core services."

The ruling is in response to the argument that the treatment was a medical necessity. But south of the border, the treatment is handled under federal jurisdiction and provided by the school boards, says Toronto lawyer David Baker, who specializes in education and disability law.

"My understanding is that it is working very, very well," Baker says, "People in the United States can't understand the problems here."

Baker and some of the parents will hold a press conference Monday at Queen's Park to announce their action.

Baker says it has even become difficult to retained qualified ABA practitioners in Canada. For the Canadians courts to agree that the treatment should be handled by the education systems, "It will be necessary to demonstrate to the court that it is a necessary, essential part of education for some," Baker says.

"The government and school boards are fully aware that this is implemented through the education system in the States," says Taline Sagharian, the Mississauga mother of a young boy with autism.
"It's inevitable that it's got to happen one day."

She says families like hers have been unable to get answers for years.

"We're used to being bounced around from one ministry to another," she says, "And no one took any kind of initiative to look at seriously implementing this in the education system."

Sagharian says there is a public misconception that ABA is a medical treatment.

"When they hear treatment, they think it is being delivered by people in white coats and stethoscopes," she says.

She says her son Christopher, who is almost eight, has learned more in the past year than he has ever learned before.

She credits his dramatic progress to the specialized school where he has been receiving intensive ABA treatment over the past year.

"He's a totally different kid," Sagharian says, "I've seen him reach a level that I never thought would be possible, he's participating more in school, more with family, he's paying attention to our conversations, and ABA is helping him to get there."

But it comes at a high price. Annual tuition for his school is $55,000 and tuition for such schools ranges from $40,000 to $70,000. She is hopeful.

"Although this decision was a blow to the cause, what remains clear is that the battle is far from being over and perhaps it provides us the opportunity to explore a different perspective on the issue," she says.

But Baker warns that a new lawsuit could take as much as five years to reach its culmination.

Another legal expert, Dianne Pothier, says she is not holding out for a new successful lawsuit.

Pothier, who was counsel for the Women's Legal Education and Action Fund for Women (LEAF) and The Disabled Women's Network Canada (DAWN) in this case, and is professor of constitutional and public law at Dalhousie Law School, says that change may have to come through the political system and through lobby groups.

The ruling didn't come as a surprise to Pothier. "I always thought it was an uphill battle in some ways," Pothier said.

"What we tried to get the court to deal with was that the health care system is geared to the typical needs of the able-bodied, and they completely ignored that point."

Pothier says, "[The court] is simply not saying it's a constitutional requirement and it certainly leaves it open to lobbying."

But even if funding is provided, there isn't the infrastructure right now to handle ABA treatment in Canadian school boards, says Dr. Joel Hundert, a psychologist who has a specialty in working with children with autism; is a certified behaviour analyst, and director of The Behaviour Institute.

There aren't the post-secondary programs in place to train practitioners who would act as consultants in the schools, he says.

Dr. Hundert says there probably only about 12 Behaviour Analyst Certification Board-certified behaviour analysts in Ontario.

"It's the only treatment approach that has been shown to be effective," he says.

"Without someone overseeing it, it's impossible to do it well."

Less than a week after the ruling, the Nova Scotia announced a $4-million program to help children with autism.

And just days after the ruling, parents of children with autism presented a petition to MPs asking the Parliament to amend the Canada Health Act to include the therapy.

"It's possible that the decision from the highest court in Canada signifies the closing of an old chapter for autism. We have no choice now but to move on to a new chapter," Sagharian says.

[Andrew Kavchak]

Economical
Calgary Herald
Dec 3, 2004Page: A23
Section: News
Edition: Final
Byline: Michael Schweighardt

Autism treatment – Re: "Cruel but correct judicial decision," Editorial, Nov. 29.

I must correct some of the misleading statements in your editorial regarding Lovaas (not "Lovass") autism treatment, or applied behavioural analysis (ABA).

The Supreme Court of Canada did not find that ABA was not medically necessary. Their finding was that since ABA treatment is not doctor- or hospital-provided, it is not technically covered by the Canada Health Act.

Regarding the B.C. government's contention that the methodology is "novel, controversial, experimental, and not a medically necessary service", the methodology is essentially "operant conditioning", which can be traced back to B. F. Skinner. The U.S. surgeon general's report on autism states: "Thirty years of research demonstrated the efficacy of applied behavioural methods." Any "controversy" that existed in the past surrounded outdated methodologies in Lovaas treatment that never became part of ABA.

As for your contention that a treatment of $40,000 to $60,000 per year for a preschooler would mean "open season" on the health system, consider that institutionalization costs at least $100,000 per year during the life of a severely autistic individual. As a few years of treatment may sometimes postpone or even avoid the need for a few parents to institutionalize their children, the taxpayers are much better served when early AMA treatment is available.

Your comic, Clear Blue Water, recently dealt with autism. It is sad to note that your comics page is more accurate regarding autism than your editorial page.

Michael Schweighardt, Calgary

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