Ontario´s Largest Autism Service Provider Applauds Ruling on Autism Funding
Canada Newswire
Apr 4, 2005

Kerry´s Place Autism Services (KPAS) applauds the recent ruling by Justice Francis Kiteley that arbitrarily cutting off access to funding for behavioural analysis (ABA) based on age is discriminatory. 'The decision as to the kind and level of support provided to each individual should be based on the individual´s needs and likelihood of being able to benefit from the treatment rather than an arbitrary age cut- off,' stated Dr. Glenn Rampton, KPAS´s Chief Executive Officer. Dr. Rampton added that while it is true that the research evidence indicates that older children and their families are likely to profit more from a broader range of supports such as family support counselling, and respite, there is no research evidence that would argue for an across the board cut-off for ABA at age five or six.

Dr. Rampton expressed concern that this was not the only area in which the government discriminates against individuals with autism spectrum disorder (ASD), using as evidence the fact that the Ministry of Community and Social Services often refuses to allow developmental services´ funding to be used to support extremely needy individuals with Asperger´s Syndrome, because they don´t score below a certain level on an I.Q. test. The individuals themselves, parents and service find such discrimination hard to understand and deal with, since providing a reasonable level of support is more cost effective in the long run. As in the situation with ABA in the early years, until now, the government has had a tendency to focus on short term savings rather than long term investment, and in particular, has not understood how important this is in addressing the special needs of individuals with ASD.

Kerry´s Place Autism Services provides a broad range of community outreach, clinical, vocational and accommodation support to more than 1000 individuals and their families across much of Southern Ontario. With a staff of more than 430, KPAS is by far the largest provider of such services across all age ranges in Ontario.

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Parents of autistic children are applauding a new court ruling
CTV News
Apr 4, 2005
Section: CTV News
Dateline: 23:30:00 ET

LLOYD ROBERTSON: The parents of thousands of autistic children across Canada are anxiously watching a brewing legal battle in Ontario. The Liberal government today announced it will appeal a recent court ruling that forces the province to fund expensive therapy for their children right through high school. It could cost the cash-strapped province millions of dollars. But as CTV's medical specialist Avis Favaro reports, parents say this therapy is their children's best hope.

BRENDA DESKIN (Plaintiff): Spider. Want to play with the spider?

AVIS FAVARO (Reporter): For a short time, Brenda Deskin thought her prayers had been answered. That a costly but effective therapy for her autistic son Michael would at last become a standard provincial treatment.

DESKIN: Hopes I guess that it was finally over, and that our kids were finally going to get what they deserve.

FAVARO: Intensive behavioural therapy requires training eight hours a day seven days a week. It's expensive. Up to $80,000.00 a year. Many parents have been paying for it themselves. They say it helps to control the anger, to promote learning.

DESKIN: This is simply unacceptable.

FAVARO: That's why five years ago, Brenda Deskin and a group of parents sued the Ontario government in a precedent-setting case, saying it should pay for intensive therapy for children through to high school. An Ontario Supreme Court judge agreed, ruling that the province has discriminated against these autistic children. That without this treatment, children are deprived of the skills they need for full membership in the human community.

DALTON MCGUINTY (Ontario Premier): But, you know, every time the court mandates a certain kind of expenditure, they also don't provide us with the money to follow up on that.

FAVARO: So the government plans to appeal, in part because officials say they've already expanded school autism programs for the thousands of children affected. Several families, however, showed up at the provincial legislature, arguing the importance of continuing intensive therapy for their children.

GIL GELLER (Mother): I live with a child who, at four years old, was highly aggressive and impossible to control. I now have a very well behaved boy who is reading and speaking.

DESKIN: There's no choice here either. We'll just keep on fighting. FAVARO: And so these families face many more months of legal battles with parents across the country watching closely, fighting to get the therapy they say is their children's only hope. Avis Favaro, CTV News, Toronto.

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Ontario to appeal ruling on autism treatment
The Guardian (Charlottetown)
Apr 5, 2005

Page: A5
Section: Canada/World
Dateline: Toronto

The Ontario government will appeal a court ruling which found it should pay for special treatment for all autistic children in Ontario, The Canadian Press has learned.

Attorney General Michael Bryant said Monday the province will appeal Friday's ruling by the Ontario Superior Court.

Premier Dalton McGuinty said earlier on Monday he was concerned whenever courts mandated government expenditures.

The court ruling issued Friday found it was against the Charter of Rights for the government to cut off the expensive one-on-one treatment to kids over the age of six.

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Mom greets end of autism funding 'ordeal'
Hamilton Spectator
Apr 5, 2005
Page: A04
Section: Local
Byline: Carmela Fragomeni

Brenda Deskin of Dundas feels vindicated by an Ontario Superior Court decision that ruled in her favour that funding should be extended to treat autistic children of all ages, including her 10-year-old son Michael.

Although the provincial government announced yesterday it will appeal the decision, Deskin believes Justice Frances Kiteley's finding that Ontario has violated the children's rights by not funding treatment beyond age six is the right one.

"It means the world for my son and hundreds like him," she said of extended funding. "Every child will be entitled to receive intensive behavioural treatment whether they are three or 15 years old."

The decision ruled in favour of the Deskins in a lawsuit they launched against the province seven years ago, while struggling under the financial, physical and emotional burden of finding and getting intensive but costly treatment for their son.

Also affected are eight other area families from Stoney Creek to Oakville, who were part of a lawsuit by 28 Ontario families that was joined by the courts to Deskin's. Kiteley also awarded them the costs of the treatment since November 2002

The long refusal by the government to fund intensive therapy for children over six has been the subject of several lawsuits, some still ongoing.

Deskin called Kiteley's 217-page decision a huge victory.

"The government really should be ashamed of itself ... The decision will hopefully end the passing of the buck once and for all and give these children what they need and so rightfully deserve."

The Deskins, who moved from Toronto to Dundas 18 months ago, have spent more than $400,000 over the years for applied behaviour analysis (ABA) therapy, finding the money however they could, including financial support from Michael's grandparents.

"It's been an extremely long and really trying ordeal for everyone," Deskin said of the lawsuit and of the ABA therapy, also known as Intensive Behavioural Intervention (IBI).

In this therapy, children are given intensive repetition and reinforcement to learn and adapt their behaviours. Proper behaviour is rewarded while improper actions such as hitting lead to a child being redirected to another activity.

Deskin describes autism as "the most stressful of all developmental disorders." Autistic children are often unaware of their surroundings and go through behaviours ranging from withdrawal, causing self-injury to hurting others and not recognizing danger.

She once found her son in bed with blood all over and a badly cut arm because he had taken the sharp-edged heat register out.

"To say it's stressful and exhausting is an understatement. I've seen divorces over it. It just consumes you."

Janet Shaughnessy of Oakville is a party to the other lawsuit in this case and says if the ruling is upheld on appeal, it will lift a deep financial burden of about $40,000 a year on her family and could mean her son Andrew, 10, might be able to go to high school some day. It will also end the age discrimination, she said.

"My son made a lot of improvements past the age of six."

Shaughnessy believes this is only because she is home schooling him and getting 40 hours of therapy for him a week.

Burlington mother Victoria Millar is involved in a different case but calls Kiteley's decision yesterday "fantastic news."

"My son is 10 and we're still looking at years and years of therapy."

She said he has already gone from a three-year-old who couldn't speak, not even to say mom, and was an uncontrollable child who would have fits all the time, to a completely functional child but with a need to learn social skills.

"It's nothing short of a miracle how far he's come. Money be damned. I'd sell my soul if I had to (to find a way to pay for the treatment)."

cfragomeni@thespec.com
905-526-3392

Michael Deskin, 10, practises fine motor skills with behaviour analyst Tara Loughrey at his Dundas home.

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McGuinty backtracks on autism
Toronto Star
Apr 5, 2005
Page: A15
Section: News
Byline: Kerry Gillespie

Some children with autism have trouble making eye contact, but yesterday it was Premier Dalton McGuinty who had the trouble.

"He wouldn't answer the questions and wouldn't look us in the eye ... (it) shows a real lack of integrity," Natoma Houston said.

Houston and her 8-year-old son Benjamin were among those who came to the Legislature yesterday and heard the McGuinty government vow to appeal a court case that forces them to offer IBI - intensive behaviour intervention - for autistic kids over age 6.

It was a particular blow, they said, because during the election, McGuinty said he would do just what the court has ordered.

Yesterday, he didn't look at the families in the Legislature and deflected all questions to Attorney-General Michael Bryant who tried to explain the government's position over the shouting from NDP MPPs.

"All these children want is for you to do what is right, to live up to your promise," NDP Leader Howard Hampton said.

When he was campaigning in September, 2003, McGuinty wrote in a letter: "I also believe that the lack of government-funded IBI treatment for autistic children over six is unfair and discriminatory."

That's exactly what Ontario Superior Court Justice Frances Kiteley decided after a year-long case. On Friday, she agreed with lawyers for 30 families, ruling that the province was violating their children's constitutional rights by denying them IBI, expensive one-on-one treatment, on the basis of age.

Earlier in the day, McGuinty told reporters it's easy for the court to side with parents because the judge doesn't have to worry about paying for it.

"Every time the court mandates a certain kind of expenditure, they don't provide us the money to follow up on that kind of expenditure," McGuinty said.

In trying to make a point about courts, McGuinty is holding kids hostage, said Mary Eberts, the lawyer for the families.

"They want to assert that no court is going to tell the Ontario government how to spend public funds," Eberts said. "It's really a battle between the government and the courts with the kids caught in the middle. They should probably just spend the money on delivering services to children with autism rather than go through another very expensive process."

Yesterday, Bryant and Children and Youth Services Minister Marie Bountrogianni both said they didn't know how much it would cost to implement the court decision and focused instead on the good things the government has done. The preschool-age autism program has been expanded by more than 25 per cent, while the number of children with autism waiting for assessment has decreased by 72 per cent in the last year, Bountrogianni said.

The government will spend some $80 million this year on services for autistic children.

Bountrogianni also said the government was advised by an expert panel that IBI is most important up to age six.

Houston doesn't believe that.

"(Benjamin) has done amazing, most of his progress has been from age seven to eight. He can read, he can write, he speaks in full sentences. When he was 3 years old he was completely non-verbal," she said.

"We sold our house to continue paying for his (IBI) tuition. That's how important it is."

with files from Richard Brennan

David Cooper toronto star Natoma Houston plays with her autistic son Benjamin, 8, at Queen's Park yesterday. She and other parents of autistic children, along with NDP MPPs, urged the government to fulfil their election promise to pay for intensive and expensive treatment for kids over age 6.

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Ontario appeal of autism ruling angers parents
Kitchener Waterloo Record
Apr 5, 2005
Page: A3
Section: Front
Dateline: TORONTO

Parents reacted with anger yesterday as the Ontario government, having promised to lift "unfair" age limits on costly childhood autism therapy, said it would fight last week's court decision requiring it to do exactly that.

The move to challenge last week's Ontario Superior Court ruling is "disgusting" and "the coward's way out," said Tammy Starr, the mother of a 10-year-old autistic girl.

"They've been told in no uncertain terms that what they're doing is unconstitutional," Starr raged during a visit yesterday to the provincial legislature. "Yet they continue to deny children with autism access to education."

Friday's ruling found the government's policy of limiting one-on-one specialized behaviour treatment to kids under six to be discriminatory.

The treatment ranges in cost from $30,000 to $80,000 a year per child.

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McGuinty breaks pledge to help autistic children: Despite promise made in opposition, Ontario Liberals to appeal court ruling that says refusal to pay for treatment is discriminatory
The Ottawa Citizen
Apr 5, 2005
Page: B1 / Front
Section: City
Edition: EARLY
Byline: Mohammed Adam, with files from Lee Gree

The Ontario government's decision to appeal a court ruling that ordered treatment for all autistic school children in the province flies in the face of a promise Dalton McGuinty made on the issue while in opposition.

Yesterday, the premier criticized an Ontario court for ruling Friday that the government's refusal to pay for the treatment of autistic children over six years old is discriminatory. It costs up to $60,000 a year to treat a child, and the court decision could cost the government millions of dollars in past and future treatments.

Mr. McGuinty, already facing a $6-billion deficit, said the courts may be overstepping their bounds in mandating expensive health services the government may not have money to pay for. Attorney General Michael Bryant immediately promised an appeal, saying governments, not courts, should decide what services to fund.

"We think the package of programs we've put in place is in the best interests of autistic children," Mr. Bryant said, "and we think that, from a legal perspective, it should be the legislatures that are making that determination."

But many parents accuse Mr. McGuinty of betrayal, pointing out that during the 2003 provincial election campaign, he promised exactly what his government now plans to oppose in court -- the extension of government-funded treatment known as intensive behaviour intervention (IBI) to autistic children older than six.

In a September 2003 letter to Nancy Morrison, a Bradford, Ont., mother of an autistic child, Mr. McGuinty said he was saddened that "too few autistic children" in the province are getting the help and support they need.

"I also believe that the lack of government-funded IBI treatment for autistic children over six is unfair and discriminatory. The Ontario Liberals support extending autism treatment beyond the age of six," he wrote.

"We are not at all confident that the Harris-Eves Conservatives care to devise any innovative solution for autistic children over six -- especially those with best outcome possibilities that might potentially be helped within the school system with specially trained" educational assistants.

Mr. McGuinty went on to stress that, "in government, my team and I will work with clinical directors, parents, teachers and school boards to devise a feasible way in which autistic children in our province can get the support and treatment they need. That includes children over the age of six."

That was the sentiment expressed by Ontario Superior Court judge Frances Kiteley when she found that the government had denied the children their constitutional rights and dignity when it refused them treatment.

Sue McGowan, an Ottawa mother of a four-year-old autistic son, says she is baffled and angered by the government's decision to appeal. Ms. McGowan said her son was on a waiting list for a year before he got approval for treatment. But she remained troubled that her son would be cut off when he hits six. The Superior court decision restored hope that he would get the help he needs to become self-sufficient as an adult. Now Mr. McGuinty, contrary to his promise, is threatening to dash those hopes, she said.

"I want my son to grow up and look after himself, and the court ruling gave us hope," Ms. McGowan said. "This decision to appeal makes me depressed. For Mr. McGuinty to promise and then change his tune after he is elected makes me angry."

Robert Shalka, another Ottawa parent with an autistic son, said the premier may pay a price for turning his back on autistic children.

"I am shocked and appalled by the mean-spirited and reactionary approach of the Ontario government in this matter," he said. "It is their right to appeal, but are they right to appeal? Politicians only understand one thing -- electoral defeat. This is what motivates them. I hope they'll rethink their decision; otherwise, they'll suffer the consequences."

In announcing the government's decision to appeal, Mr. Bryant cited a similar case last November in which the Supreme Court of Canada refused to order the British Columbia government to pay for such treatment. The court said provincial governments -- not the courts -- should set their own health care priorities. That ruling has left parents like Ms. McGowan anxious about a legal battle that's likely to end at the Supreme Court. Based on the B.C. case, she doesn't see any hope for her son.

But Brenda Reisch, charity co-ordinator with Children at Risk, an Ottawa autism group, said the mood among families after they learned of the government's decision to appeal was one of defiance and resolve. "Families of autistic children have pretty strong backbones, and I say 'good luck to the government.' These families are not going to give up. There is a resolve to continue this fight. They are in for the long haul," said Ms. Reisch, who has an autistic son.

The court case was launched by 30 families whose children are among an estimated 18,000 autistic children under 19 in Ontario. Government officials have put the number at about 8,000. Peter Zwack, president of the Autistic Society of Canada, says there are more than 5,000 children in schools who are not receiving "appropriate treatment."

In Ottawa, the Ottawa-Carleton District School Board says it has 300 autistic students for whom special education is required. The Ottawa Catholic School Board puts the number of its autistic students at 200.

Michael Baine, superintendent of special education at the Catholic board, says he doesn't know how the court decision will affect schools. He says the kind of therapy the courts have mandated is not provided in the schools at the moment, because they don't have the expertise.

"We have special education teachers who provide a full range of services and support needed in the classroom, but not therapy," he said. "I really don't know what this court decision will mean for the schools. The government will decide what to do and tell us."

Colour Photo: Jean Levac, The Ottawa Citizen / Ottawa mother Sue McGowan says she is baffled and angry over the government's appeal of a decision that could help autistic son Felix D'Iorio.; Photo: Michael Bryant: Attorney general cites Supreme Court.; Photo: Dalton McGuinty: Threatens to dash mother's hopes.

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Autism appeal
The Montreal Gazette
Apr 5, 2005
Page: A10
Section: News
Edition: Final
Dateline: OTTAWA

The Ontario government will appeal a court ruling requiring it to pay for an expensive treatment program for autistic children, Attorney-General Michael Bryant said yesterday.

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Autism ruling lauded: Province plans to appeal court-ordered treatment
Windsor Star
Apr 5, 2005
Page: A2
Section: News
Edition: Final
Byline: Don Lajoie

Windsor parents of autistic children are hailing an Ontario Superior Court decision which may open the door for government funding of intensive therapy programs for children older than five.

"This is great news for the children and their families," said Rita Meceli, mother of an autistic son and a plaintiff in a parallel class-action lawsuit to one decided Friday by Justice Frances Kiteley. "The situation now is discriminatory and unfair. No kid stops learning at age six."

Kiteley ruled all of Ontario's autistic children should have access to government funding for the intensive, one-on-one therapy -- known as applied behavioural analysis -- and not just those between the ages of two and five. The judge held that current government policy violates the children's constitutional rights by denying them treatment on the basis of age.

GOVERNMENT APPEALING

The Liberal government announced Monday it will appeal the ruling.

Attorney General Michael Bryant said the ruling contradicts a previous Supreme Court decision which gave governments the "flexibility" to provide programs for autistic children that are "in the best public interest."

Premier Dalton McGuinty expressed concern about courts mandating government spending, suggesting such decisions could set dangerous precedents.

"Every time a court says we require that you spend money ... they don't tell us where we're supposed to get the money," said McGuinty. "There are also many other families whose children are affected by other kinds of learning disabilities."

The government estimates extending treatment coverage, which can cost between $30,000 and $80,000 annually per child, could cost millions of dollars. Statistics show between one in 200 and one in 500 children are born with autism spectrum disorder.

"The defendant has violated the rights of the infant plaintiffs," Kitelely's ruling concluded. The decision grants relief and damages for past and future therapy on behalf of the 30 families who made up the class-action suit against the Ontario government.

"My child was on a waiting list for the therapy for two years," said Meceli. "So he was only covered for one year then they cut him off. Studies show the younger they get it and the more hours they get, the better off they'll be."

She said costs averaged about $40,000 a year. She added her son, nine-year-old Giacinto, has verbal skills so his therapy, now two hours a day, may be on a more sophisticated level.

"He gets it, but he has to work very hard at it," she said. "You go through everything step by step. His progress has been amazing."

Laura Golocevac, president of the Windsor Chapter of the Autism Society of Ontario, said the local organization has 150 members and between 50 and 60 per cent are either following the program or on a waiting list. She said not all parents with autistic children belong to the organization and added that statistics show the Windsor area's rate of autism is a province-high of one out of every 166 children.

She said each child is different: some are able to go outside and even participate in sports to a limited degree while others are so withdrawn they barely respond to stimulus. Depending on the severity of the case, the therapist may take six to eight hours per session of repetition to encourage the child to accomplish a simple task such as making that first loop in the act of tying a shoe.

Michele Helou, whose seven-year-old son Noah is severely autistic, said he has to be "basically programmed" through constant repetition to do virtually everything.

Photo: Scott Webster, Star photo / AID SOUGHT: Parents of autistic children are applauding an Ontario court decision saying the government must pay for their children's intense therapy. On the heel of that decision Rita and John Meceli were found reading to their nine-year-old autistic son Giacinto in the family room of their South Windsor home Monday.

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Cuts hurting the kids
Windsor Star
Apr 5, 2005
Page: A7
Section: Editorial/Opinion
Edition: Final
Byline: Marti L. Candido

Re: The article Preemies Learning Curve Can Be Steep. I must take exception with Catholic board superintendent Janet Ouellette's comments regarding the level of service required by special education students.

Ben Jeffrey's story is an all too familiar one at this board. He's doings so well that it's time to take away his EA. My son, who has autism, is sharing an EA this year with another autistic boy in his classroom, even though his most recent psychological assessment in September stated that he should have one-on-one classroom support.

This could be Cut No. 1 compared to last year. My child also needs constant cueing to stay on task but has been very successful in completing an academic curriculum in the past.

The teacher admittedly has no autism training and has two students in one class. I know that there are other children in the classroom with difficulties who would also benefit from having two EAs in the room.

Cut No. 2 would be the fact that speech services are still not in place. I have tried to follow up several times with the school starting Jan. 18 via a phone call with the vice-principal. I was told that children over Grade 4 did not receive this service.

Several phone calls between the principal and my husband on March 23 revealed that we were supposed to contact the speech therapist. We were never given a name, not even a piece of paper stating that he was even being considering for service despite a November 2004 referral.

Occupational therapy after two years of no service has just been resumed that month. Surprisingly, I did not have to chase after this one.

The caseworker and therapist did their jobs and followed through. I am just a parent, and according to the statement of the superintendent, I do not know what my child's needs are. If I don't , please let me now the name of the expert employed by the board who does and who will follow up when these needs are not being met.

I can tell you that he needs one-on-one support as stated in his latest psychological report. He also needs occupational and speech therapy. He needs a supportive school environment and parents who are not stressed out from getting the bureaucratic runaround all year.

The school year is two-thirds over and my son has not had the proper supports in place since day one. Not one test has come home this year -- unlike every other year.

Sugar-coat the obvious any way you like, superintendent Ouellette, but these are well-documented cuts in the level of service being given to children who are among the most vulnerable.

Taxpayers are very astute about this board's well-documented extravagance. Educating teachers is a must, and I thought this was what PD days are for.

According to the article, this board will be using special-education funds for this. Should it come at the expense of the children who are not getting the front-line support needed on a daily basis?

Marti L. Candido
Windsor

Photo: Tyler Brownbridge, Star photo / SPECIAL NEEDS: Ben Jeffrey jokes around while having his picture taken in his Windsor home. Ben's parents are upset about his school's choice to limit his access to one-on-one care.

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Liberals will appeal autism court ruling: Parents' groups call decision a betrayal of election promise
National Post

Apr 5, 2005
Page: A12
Section: Toronto
Edition: Toronto
Byline: Lee Greenberg

The Ontario government will appeal a court decision that ruled its policy on treatment for autistic schoolchildren is discriminatory, the Attorney-General said yesterday, prompting renewed criticism of another broken Liberal election promise.

"I feel completely betrayed,'' said Tammy Starr, a member of one of 30 parents' groups who took the government to court over its policy to stop an expensive form of treatment at age six.

"They've been told in no uncertain terms that what they're doing is unconstitutional, it's illegal, and for that matter it's immoral. And yet, they continue to deny children with autism access to education and to the only way of learning and becoming functioning citizens that is scientifically proven.''

Superior Court Judge Frances Kiteley ruled on Friday that Ontario's policy violates the constitutional rights and human dignity of autistic children, ruling that without the treatment they "are deprived of the skills they need for full membership in the human community.''

During the 2003 election campaign, Dalton McGuinty said he supported lifting the age cap on treatment, calling it "unfair and discriminatory.''

Yesterday, however, the Premier bristled at the potentially multi-million-dollar decision, saying it will force his government to spend money it doesn't have.

"Every time the court mandates a certain kind of expenditure, they also don't provide us the money to follow up on that kind of an expenditure,'' he told reporters. "Autism is a very serious and important to many Ontario families, but it represents a very small minority of children suffering from learning disabilities. And of course, we've got to ask ourselves, 'What about the overwhelming majority? Do they then go to court on an ongoing basis for each and every one of their very special concerns?' ''

There are an estimated 8,000 autistic children under the age of 18 in Ontario, officials said.

In announced the government would appeal the decision, Attorney-General Michael Bryant cited a November Supreme Court decision in a similar case that ordered British Columbia parents to pay for the treatment themselves.

"We think the package of programs we've put in place is in the best interests of autistic children,'' Mr. Bryant said, "and we think that, from a legal perspective, it should be the legislatures that are making that determination.''

Ms. Starr's 10-year-old daughter, Carly, is one of an unknown number of children receiving ABA (also known as IBI) treatment, an intensive teaching strategy that breaks down language and tasks into components repeated until the autistic child masters them.

Carly receives about 35 to 40 hours of ABA -- after school and on weekends. In addition, Ms. Starr and her husband, Arthur Fleischmann, pay to train their daughter's educational assistant at public school trained in the therapy.

The therapy costs the couple about $60,000 a year, and has forced them to remortgage their house and run up a line of credit at the bank.

"We'll just keep going, because my daughter's making incredible strides,'' she said.

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Ontario gov't will appeal autism ruling
The Edmonton Journal
Apr 5, 2005
Page: A16
Section: News
Edition: Final
Dateline: TORONTO

TORONTO - The Ontario government will appeal a court decision that ruled its policy on treatment for autistic schoolchildren is discriminatory, the attorney general said Monday.

"I feel completely betrayed,'' said Tammy Starr, one of more than 30 parents who took the government to court over its policy to stop an expensive form of treatment at age six.

"They've been told in no uncertain terms that what they're doing is unconstitutional, it's illegal and for that matter it's immoral," Starr said.

"And yet, they continue to deny children with autism access to education and to the only way of learning and becoming functioning citizens that is scientifically proven.''

Superior Court Judge Frances Kiteley ruled Friday Ontario's policy violated the constitutional rights and human dignity of autistic children.

During the 2003 election campaign, Ontario Premier Dalton McGuinty said he supported lifting the age cap on treatment, calling it "unfair and discriminatory.''

On Monday, he bristled at the decision, saying it would force his government to spend many millions of dollars it doesn't have.

"Autism is very serious and important to many Ontario families, but it represents a very small minority of children suffering from learning disabilities," he said.

There are an estimated 8,000 autistic children under the age of 18 in Ontario, officials said.

Attorney General Michael Bryant cited a Supreme Court of Canada decision in a similar case in November. It ordered British Columbia parents to pay for the treatment themselves.

Starr's 10-year-old daughter, Carly, is one of an unknown number of children receiving an intensive teaching strategy that breaks down language and tasks into components repeated until the autistic child masters them. Many experts feel the treatment offers autistic children the only chance to lead a highly functioning life.

Carly receives about 35 to40 hours of treatment -- after school and on weekends. The therapy costs her parents about $60,000 a year, and has forced them to remortgage their house and run up a line of credit at the bank.

"We'll just keep going, because my daughter's making incredible strides,'' Starr said.

Colour Photo: Ottawa Citizen, CanWest News Service / Sue McGowan and her autistic son Felix D'Iorio play in their house in Ottawa. Some Ontario parents are fighting for provincial funding for a program for their autistic children.

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Ontario to appeal decision on autism treatment
Times Colonist, The (Victoria)
Apr 5, 2005
Page: A8
Section: News
Edition: Final
Dateline: TORONTO

TORONTO - The Ontario government will appeal a court decision that ruled its policy on treatment for autistic schoolchildren is discriminatory, the attorney general said Monday.

"I feel completely betrayed," said Tammy Starr, one of 30 groups of parents who took the government to court over its policy to stop an expensive form of treatment at age six. Superior Court Judge Frances Kiteley ruled Friday Ontario's policy violated the constitutional rights and human dignity of autistic children.

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TOR OUT YYY
BNW - Broadcast News
Apr 5, 2005

Parents say the McGuinty government is taking ``the coward's way out'' by appealing a decision on autism therapy.

Ontario's Superior Court ruled it was discriminatory for the province to cut off funding for treatment once a child reaches age six.

But Premier Dalton McGuinty says that's a decision government should make, not the court, and Ontario will appeal. (BN)

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Ont-Autism-Funding
Broadcast News
Apr 5, 2005

TORONTO -- Parents of autistic children accuse the McGuinty government of taking ``the coward's way out'' by appealing a recent court decision.

The Ontario Superior Court ruled it was discriminatory for the province to cut off funding for expensive therapy for autistic children once they reach age six.

Premier Dalton McGuinty says that's a decision government should make, not the court, so Ontario will appeal the ruling.

But Tammy Starr of Toronto, who has a 10-year-old autistic daughter, says McGuinty promised he'd fund therapy for autistic kids of all ages.

She says the Liberals ``should all be ashamed of themselves.''

Susan Fentie of Sarnia says she had to put one of her two autistic children into an institution after the therapy was cut off.

The Opposition parties accuse McGuinty of breaking his campaign promise to fund autistic treatments.

The New Democrats say it is unconscionable for the government to drag the parents through the courts yet again.

(BN)
kjl

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Court's decision buoys litigants
Globe & Mail
Apr 5, 2005
Page: A6
Section: National News
Edition: National
Byline: KIRK MAKIN

A landmark Ontario ruling asserting the right of autistic children to receive treatment through the education system has given a major boost to similar litigation across the country.

The litigation includes two class-action lawsuits and about two dozen cases launched by individual parents who earlier won injunctions that granted them interim ABA/IBI treatment pending the Ontario ruling.

"I think all hell is going to break loose, because the province wasn't prepared for this," said lawyer Marvin Kurz, who has
several clients fighting for autism treatment for their children.

In her 217-page decision, Madam Justice Frances Kiteley of the Superior Court of Ontario said provincial school boards must give the treatment to 35 autistic schoolchildren.

"We now have very powerful findings of fact that we can rely on in our case," said Howard Kohn, a Toronto lawyer fighting
a class action on behalf of families whose children were denied or cut off from treatment.

The class action alleges that the government had money available and allotted to provide autism treatment, yet the education system spent it in unrelated ways.

Mr. Kohn said that the emphasis on ABA/IBI treatment as an essential cog in the education of autistic children is extremely apt: "The ruling is a work of scholarship. It is such a powerful document that it will be difficult for the province to win an appeal."

David Baker, a lawyer working on the other class action, said Judge Kiteley's decision "is very strongly supportive" of his
claim that Ontario should pay up to $1-billion to families whose children were denied treatment.

"It is full speed ahead," Mr. Baker said. "We were just holding off until we saw the decision." Meanwhile, Mr. Justice Lee Ferrier of the Ontario Superior Court has asked lawyers in the injunction cases to meet with him next week to map out how to proceed.

"We all need to sit down and figure out what makes sense," Mr. Kurz said. "I don't think the government wants 10 trials exactly like this last one."

At least one case targeting the education system is proceeding in B.C., said Sabrina Freeman, a litigant in an autism case known as Auton, which went to the Supreme Court of Canada recently.

"When you have lawsuits breaking out all over the country, it tells you that something is terribly wrong," Ms. Freeman said.

However, she was skeptical about their final outcome, in light of the Supreme Court's rejection of autism treatment as a right guaranteed within the health-care system.

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Austism ruling will be appealed Courts should not decide which children get care, Queen's Park says
Globe & Mail
Apr 5, 2005
Page: A6
Section: National News
Edition: Metro
Byline: CAROLINE ALPHONSO

The Ontario government came under attack from parents and opposition critics yesterday after it announced that it would appeal a court decision that says it is violating the constitutional rights of autistic schoolchildren by refusing them treatment.

Responding to an Ontario Superior Court ruling that said the denial of one-on-one therapy to children over the age of 6 is discriminatory, Attorney-General Michael Bryant said that governments, not courts, should determine what programs autistic children get in schools.

"We have provided more services, more improvements, more programs and more funding than has ever been provided in the past," Mr. Bryant said. "We'll continue to try and ensure that we're providing the best treatment . . . The legal issue is who should be deciding it. We feel the elected should."

The government's move angered parents, who have remortgaged their homes and shelled out thousands of dollars to pay for the treatment their autistic children are not getting in the school system.

"How can you not give a child what he needs?" asked Dan Fentie, who has two autistic sons. "How can you deprive a child of that? It just doesn't make sense."

Mr. Fentie, along with his wife and a handful of parents, came to the legislature yesterday to hear the government's response to the Superior Court's ruling. The court's decision dominated Question Period.

Premier Dalton McGuinty was accused of breaking an election promise. In a letter to a parent of an autistic child about
10 days before the Ontario election, Mr. McGuinty said the lack of treatment for autistic children over the age of 6 is "unfair and discriminatory" and that the Ontario Liberals would extend treatment.

"I feel completely betrayed by [Mr. McGuinty]," said Tammy Starr, a litigant with an autistic child.

New Democrat MPP Shelley Martel said outside the legislature: "I don't know how the Liberals can look themselves in the mirror any more."

In a 217-page decision on Friday, Madam Justice Frances Kiteley of the Ontario Superior Court ruled that all of Ontario's autistic children deserve access to government funds for specialized treatment that currently is available only to those under 6.

The therapy is referred to interchangeably as ABA or IBI. It is a system of behaviour modification that uses basic principles of psychology -- positive reinforcement, where children "work" for rewards such as candy or toys -- to teach autistic children language skills and how to play appropriately. The treatment can cost up to $60,000 a year for each child.

Autism affects from two to six children in every 1,000. Children and adults with autism typically have difficulty communicating and socializing.

Yesterday, throughout Question Period, the Premier deferred all statements to the Attorney-General, further frustrating
parent Kiri Nesbitt, who says the government has moved too slowly on the autism file.

Ms. Nesbitt has had to cash in her RRSPs and sell her car to pay for treatment for her five-year-old daughter, Thais, at
home.

Although specialized treatment is available to those between 2 and 5, the waiting list is so long that many children turn 6 before they can get in. Ms. Nesbitt said her daughter is in that situation.

Thais receives ABA treatment at home and has made considerable progress since she was diagnosed at the age of 3. She no longer screams when someone comes into the house, nor does she starve herself when upset. The treatment at home, Ms. Nesbitt said, is needed so that her daughter doesn't regress. Thais doesn't receive one-on-one treatment in her special-education class at a Toronto public school.

"The teachers and the individual staff are absolutely wonderful. But we're not getting any support from the board itself and
the bureaucrats," she said.

Like other parents, Ms. Nesbitt fears that Thais will not receive proper treatment in the school system any time soon.
"I've become very cynical over the years with all that has happened," she said.

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SPECIAL-NEEDS CASES TO GET CLOSE LOOK
The London Free Press
Apr 5, 2005
The London Free Press
Edition: Final
Section: City & Region
Page: B1
BY JOE MATYAS, LONDON FREELANCE WRITER

A London mother fighting for special services for her autistic son didn't get the answer she was looking for when her case was raised in the Ontario legislature last week.

But Cynthia (Cyndi) Cameron hopes the response given by Marie Bountrogianni, Ontario's minister of children and youth services, will help not only her son in the near future but others in the London area as well.

Bountrogianni avoided making a commitment to Cameron, but said she has asked the London regional social services office to look into current special-needs cases.

During question period last Thursday, the NDP's critic of health and long-term care, Shelley Martel, asked Bountrogianni if she was prepared to enter a special-needs services agreement with Cameron for her 14-year-old son, Jesse.

Jesse has been on a waiting list for services since May 2002, said Martel, adding his parents signed a temporary agreement with the London-Middlesex Children's Aid Society last summer to get him services. The CAS had Jesse moved to a group home in Barrie.

Without a special-needs agreement, Cameron and her husband, Alex Glinka, will be forced to give up custody of Jesse permanently in August to retain services, Martel said.

"I agree no family should give up custody to get services," said Bountrogianni.

"We're building the system. Unfortunately, it takes time. We're doing the best we can."

As many as 50 children and youth in the region are reported to be on waiting lists for services.

Meanwhile, parents of special-needs children have been battling the province in court in two separate cases.

One is seeking class-action status for parents who want special-needs agreements and residential placements for their children. The parents are awaiting a decision from a trio of appeal court judges.

The other case involves a treatment, known as intensive behaviour intervention, for autistic children beyond the age of five.

An Ontario Superior Court justice ruled Friday the province is violating the constitutional rights of older children by denying them treatment on the basis of age.

Last week, Andrew Weir, a spokesperson for Bountrogianni, said resources for special needs are stretched and there are waiting lists for services.

Chris Bentley, Ontario's labour minister and Cameron's MPP in London West, said he's spoken to Cameron.

"These are very difficult and challenging cases," he said. "They place parents in a terrible position" of having to make a choice between custody and services.

Bentley said Bountrogianni plans regional "round tables to see what resources are available and how they can be most effectively matched up."

Efforts will also be made to identify additional resources for special needs, he said.

Cameron and Martel met with Bountrogianni's assistant deputy minister after question period.

"She's promised to look into a placement for Jesse that's closer to home," she said.

Illustration: 2 photos

1. photo of CYNTHIA (CYNDI) CAMERON

2. photo by Morris Lamont, The London Free Press

TOO OLD TO TREAT: Cynthia Boufford's son, Jordan, was cut off from intensive therapy for his autism when he turned six.

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AUTISM APPEAL PLAN 'FRUSTRATING'
The London Free Press
Apr 5, 2005
The London Free Press
Edition: Final
Section: City & Region
Page: B1
BY MARISSA NELSON, FREE PRESS REPORTER AND NEWS SERVICES

London parents who have battled to get expensive treatment for their autistic children were dealt a blow yesterday when the Ontario government announced it will fight a court ruling ordering it to provide the treatment for older children.

"It's very frustrating. They promised to do this and even the courts said they should do it and (the province) still isn't doing it," Londoner Cynthia Boufford said yesterday.

Her son, Jordan, stopped receiving the treatment, known as intensive behaviour intervention, when he turned six last year.

The province's policy is to pay for treatment for children under the age of six because of the cost, which can range from $30,000 to $80,000 a year a child.

In a ruling Friday, an Ontario Superior Court justice found the policy of denying the one-on-one therapy to children over the age of six to be a violation of the Charter of Rights.

The Superior Court ruling flies in the face of an earlier Supreme Court ruling that supports the government's position, Attorney General Michael Bryant said.

"Ontario will appeal this decision," Bryant said yesterday.

He said the high court ruling gave governments "the flexibility to provide programs for autistic children that they feel are in the best interest, in the public interest, for autistic children and that specific treatment programs are best determined by governments and not by the courts."

Boufford said she's seen her son's progress slow since the therapy was cut off and worries about what he'll be like when he's a teen.

"I've fought like crazy. I'm burned right out. I feel finished and I wasn't even in the court battle," she said.

"I have no faith in politicians anymore. I voted for the Liberals . . . They turned their back on us."

Wayne and Rosmarin Sinden, who live near Tillsonburg, pay for their seven-year-old autistic son's therapy -- $31,000 last year.

"If you had cancer, would they say you can't have treatment if you're over 65?" Wayne Sinden said. "This makes you feel like a second-class citizen."

Premier Dalton McGuinty expressed concern about the courts mandating government spending and suggested the ruling could expose the government to a slippery slope it can ill afford to go down.

"Every time a court says we require that you spend money in this way, they don't tell us where we're supposed to get the money," McGuinty said.

Ron Scarfone, vice-chairperson of this region's chapter of the Autism Society of Ontario and father of two autistic boys, said he shook his head when he learned of the province's plans to appeal.

"I just want the best for my kids, and all the other kids. They have a chance -- a chance to succeed."

Ontario Superior Court Justice Frances Kiteley ruled Friday Ontario's autistic children deserve access to government funding for treatment that is only available to those between the ages of two and five.

"The defendant has violated the rights of the infant plaintiffs," Kiteley wrote in the ruling, which granted relief and damages for the cost of past and future therapy for the families involved in the case.

The families of 39 autistic children were suing the Ontario government to pay for the therapy.

AUTISM FACTS

- Autism is a developmental disorder that is hard to diagnose, hard to treat and next to impossible to cure.

- It is usually diagnosed in children younger than three.

- It prevents children from interacting normally with other people and affects almost every aspect of their social and psychological development.

- Symptoms vary greatly, but include difficulty communicating. Children with autism can become upset by change, can show repetitious behaviours and can have a limited range of interests and activities.

- Experts stress the importance of early diagnosis of autism in helping treat children with the disorder.

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DAD 'DISTURBED' BY MCGUINTY'S MOVE
The Ottawa Sun
Apr 5, 2005
The Ottawa Sun
Edition: Final
Section: News
Page: 9
BY TOBI COHEN, OTTAWA SUN

With his autistic son just two years from potentially being cut off from government-paid treatment, Andrew Kavchak is gearing up for a bitter battle with the province.

Kavchak applauded an Ontario Superior Court ruling Friday that found the province was violating the Charter rights of autistic children by only providing costly treatment programs until they turn six.

But when he learned yesterday the McGuinty government was not only going to renege on yet another election promise, but vowed to appeal the case, he was livid.

"We're very, very disturbed that McGuinty is appealing this decision," he said. "We are confident that we will ultimately prevail and win but we are very disappointed."

While the government is arguing, among other things, that it can't afford to extend the program, Kavchak doesn't buy it.

Citing a report by the provincial auditor last fall, Kavchak noted the government program had been operating at a $16.7-million surplus while more than 1,200 kids sat on waiting lists for treatment.

And Kavchak knows firsthand what it's like to sit on a waiting list.

SHELLING OUT CASH

His son Steven, 4, was diagnosed with autism on Dec. 8, 2003, just before his third birthday, but Kavchak's been shelling out cash from his own pocket for the specialized one-on-one treatment.

A month-and-a-half ago he was finally told he'd reached the top of the waiting list for funding.

Though not among the 30 families that launched the lawsuit from which stemmed the court ruling, Kavchak is among countless families of autistic children who'll be following the case closely.

tobi.cohen@ott.sunpub.com

Illustration: photo by Suzanne Bird, SUN file photo

ANDREW KAVCHAK and his autistic son Steven, 4, pose for a photo. The Kavchaks have been waiting for funding.

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GRITS TO APPEAL AUTISTIC CARE ORDER
The Ottawa Sun
Apr 5, 2005
The Ottawa Sun
Dateline: TORONTO
Edition: Final
Section: News
Page: 9
BY ANTONELLA ARTUSO, QUEEN'S PARK BUREAU

The Ontario Liberal government will appeal a court decision requiring the province to provide expanded services to autistic children.

Premier Dalton McGuinty said he's concerned whenever the courts order the government to make expenditures.

"We've done a lot when it comes to the autism issue," he said.

"But you know, every time the court mandates a certain kind of expenditure, they also don't provide us the money to follow up on that kind of expenditure."

McGuinty said autism devastates many families in Ontario, but added the children represent only a small minority of the thousands of youngsters with special needs.

CAN'T CUT TREATMENT

"Do they then go to court on an ongoing basis for each and every one of their very special concerns and demand that the province of Ontario be mandated to make certain expenditures to help out those families?" McGuinty asked.

Ontario Superior Court Judge Frances Kiteley decided that it is discriminatory to cut ABA/IBI -- an intensive and expensive form of therapy -- from autistic children once they reach age six.

The judge, concluding a lawsuit brought by the parents of autistic children, said they are being denied their constitutional right to participate in society.

NDP Leader Howard Hampton said McGuinty once believed it was discriminatory, too.

Hampton read from a letter McGuinty sent to the parent of an autistic child prior to the last election in which he called the lack of IBI treatment for kids over six years old "unfair and discriminatory."

Toronto mom Tammy Starr, who participated in the lawsuit on behalf of her 10-year-old daughter Carly Fleischmann, said she feels "betrayed" by the Liberals' abandonment of their commitment.

Memo: With files from Christina Blizzard

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AUTISM RULING RIPPED MCGUINTY TO APPEAL EXPANDED SERVICES
The Toronto Sun
Apr 5, 2005
The Toronto Sun
Edition: Final
Section: News
Page: 12
BY ANTONELLA ARTUSO

ONTARIO WILL appeal a court decision requiring the provincial government to provide expanded services to autistic children.

Premier Dalton McGuinty said he's concerned whenever the courts order the government to make expenditures.

"We've done a lot when it comes to the autism issue," he said.

"But you know, every time the court mandates a certain kind of expenditure, they also don't provide us the money to follow up on that kind of expenditure."

McGuinty said autism devastates many families in Ontario, but the children represent only a small minority of the thousands of youngsters with special needs.

"Do they then go to court on an ongoing basis for each and every one of their very special concerns and demand that the Province of Ontario be mandated to make certain expenditures to help out those families?" McGuinty asked.

DISCRIMINATORY TREATMENT

Ontario Superior Court Judge Frances Kiteley has decided that it is discriminatory to cut ABA/IBI -- an intensive and expensive form of therapy -- from autistic children once they reach age 6.

The judge, concluding a lawsuit brought by the parents of autistic children, said they are being denied their constitutional right to participate in society.

NDP Leader Howard Hampton said McGuinty once believed it was discriminatory too.

Hampton read yesterday from a letter McGuinty sent to the parent of an autistic child just prior to the last provincial election in which he called the lack of IBI treatment for kids over 6 years old "unfair and discriminatory."

FEELS 'BETRAYED'

Toronto mom Tammy Starr, who participated in the lawsuit on behalf of her 10-year-old daughter Carly Fleischmann, said she feels "betrayed" by the Liberals' abandonment of their commitment.

Starr said she spends on average of about $1,000-$1,500 a week on treatment for Carly.

"We recently re-mortgaged our house and we will just keep going because my daughter is making incredible strides," she said.

Children and Youth Services Minister Marie Bountrogianni said the Ontario government has expanded its autism program for preschool-age children by more than 25%.

The number of children with autism waiting for assessment has decreased by 72%, Bountrogianni said.

Memo: -- with files from Christina Blizzard

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Response from Ujjal Dosanjh, Federal Minister of Health
to parent of autistic child

-----Original Message-----
From: XXX
Sent: Tuesday, April 5, 2005 10:34 AM
To: XXX
Subject: In response to your correspondence concerning autism funding

Dear XXX

Thank you for your correspondence in which you express concern over autism funding and the need for a national strategy on this front. I note that you also wrote to my colleague, the Honourable Carolyn Bennett, Minister of State (Public Health) and to Mr. Ian C. Green, former Deputy Minister of Health. The Honourable Jim Munson, Senator, has also written to my Chief of Staff, Mr. Robert Fry, on your behalf.

I am concerned about the challenges faced by those with autism and their families. Health Canada is aware of the difficulties regarding support and provision of accessible behavioural therapy programs. However, the provincial and territorial governments, rather than the federal government, have primary responsibility for matters related to the administration and delivery of health care services.

Under the Canada Health Act, the provinces and territories are required to provide medically necessary hospital and physician services to their residents on a prepaid basis, and on uniform terms and conditions. Any service provided by a physician or in a hospital that is considered to be medically necessary in the treatment of a disease or condition should be covered by the provincial and territorial health insurance plans. However, provincial and territorial governments determine whether certain other services, such as those provided by behavioural therapists, will be covered by their health care plans, or through separately funded programs, in addition to the medically required hospital and physician services that are within the scope of the Act.

For more detailed information on future directions concerning the treatment of Canadians with autism spectrum disorder (ASD), I would suggest that you approach the health and social services delivery providers of provincial and territorial governments. A link to all the provincial and territorial ministries of health is available on Health Canada's Web site at www.hc-sc.gc.ca/datapcb/iad/links-e.htm.

I recognize the importance that you place on this issue given that your son was diagnosed with autism last year. In order to establish a useful dialogue, you may wish to meet with Dr. Mark Bisby, Vice-President of Research for the Canadian Institutes of Health Research (CIHR). The CIHR is the Government of Canada's health research funding agency and currently supports over 30 grants and awards related to autism research, equalling an estimated multi-year commitment of $16.2 million. The CIHR and its Institute of Neurosciences, Mental Health and Addiction have been extremely active working with a wide variety of partners in the fight against autism. Dr. Bisby can be reached at (613) 954-1959.

Please accept my best wishes in your continued endeavours to raise awareness and further support for autism research in Canada.

Yours sincerely,

Ujjal Dosanjh

c.c. The Honourable Jim Munson, Senator
The Honourable Carolyn Bennett, P.C., M.P., M.D.

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TAKE ACTION

Please contact your MPP in Ontario ... regaring McGuinty's broken pledge to autistic children

Please contact your MPs ... to lend your support to end the discrimination against children with autism,
and to fund autism treatment within Canada's medicare.

Resources:

"Tell It To Ottawa, Legislative Toolkit"

How to Contact Your MP