Wednesday, June 13, 2007

MEDIA RELEASE!! National Autism Strategy-Eugene Levy Spokesperson

NEWS FOR TODAY!!! URGENT!!

Across the front page headline (above the fold) and the newspaper's name:

"Eugene Levy's serious side
It's time to cover autism with medicare" along with a picture of Eugene Levy with Luke Burrows (11) and Michael Deskin (12).

Can you get any better publicity than that? Congratulations to press conference organizers and participants Brenda Deskin, Norrah Whitney, Senator Jim Munson, and of course, Eugene Levy! Good luck at your press conference this morning!!!

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AUTISM: CALL FOR A NATIONAL FUNDING STRATEGY It's no laughing matter Eugene Levy joins a group lobbying Ottawa to put autism treatment under medicare
Globe & Mail
Jun 13, 2007
Page: L1
Section: Globe Life
Edition: Metro
Byline: Hayley Mick
When Canadian comedian Eugene Levy thinks about autism, he pictures a scrawny kid.
The kid is dwarfed by other kids, who have names like cancer
and diabetes and are protected by wealthy foundations. And when
they need treatment, those kids are swept into the loving arms
Canada's health care system.
But not autism.
"Autism is just trying to scream in the air, telling people,
'We need some help here!' and no one's really recognizing it,"
said Mr. Levy in a telephone interview.
Today, Mr. Levy will use his Hollywood star power to focus attention
on autism by taking aim at the federal government. At a press
conference in Toronto, the Hamilton-born actor will join his
12-year-old autistic cousin, Michael, Liberal senator Jim Munson
and parents to call on Ottawa to put autism treatment under
medicare, just like cancer or diabetes.
A national strategy on autism is critically needed, they say,
to lift the burden off of parents who are mortgaging their homes
and buckling under debt trying to get treatment for their autistic
children.
"We have tried advocacy, we have tried eight years of litigation
that went nowhere," says Brenda Deskin, who is Mr. Levy's cousin
and Michael's mother.
"We had no choice but to get political. And who better than
Eugene Levy to get the message out?"
Today, the number of children diagnosed with autism spectrum
disorders is rising and the origins of the neurological disorders
remain a puzzle. While there is no cure, applied behavioural
analysis, or ABA, is regarded as the best treatment option.
But in Canada, coverage varies from province to province in
terms of who qualifies for therapy and for how long.
Alberta, for example, pays up to $20,000 worth of treatment
costs a year for patients with two areas of documented special
needs. The province also provides some assistance for children
going through school. Ontario patients are eligible for up to
30 hours a week of ABA treatment, but only for severe cases
and wait lists are long, doctors say.
For years, parent groups across Canada have lobbied provincial
governments to fund autism treatments; cases have reached the
Supreme Court of Canada. Now, frustrated by the differential
treatment between provinces, many parents are calling on the
federal government to develop a national strategy that would
include funding under medicare and would create more training
for ABA therapists at Canadian universities.
Those demands will be presented today by parents belonging to
the Ontario chapter of Families for Early Autism Treatment,
along with Mr. Levy and Mr. Munson.
They have the support of doctors such as Wendy Roberts, the
head of the autism research unit at the Hospital for Sick Children
in Toronto. She says she has seen parents and even grandparents
lose their homes and spend up to $80,000 a year on treatment
for autistic children.
"After we make the diagnosis, the next question is, how much
money can you spend?" Dr. Roberts said, noting doctors would
never be forced to ask that question of a patient diagnosed
with cancer.
Gail Geller, a single mother from Toronto, says she feels "survivor's
guilt" when she thinks about other Ontario children don't qualify
for 30 hours a week of ABA treatment like her son, Adam.
Before beginning the therapy at age 4, Adam couldn't speak or
sit still, and only ate crackers. Now, at age 11, he is calmer
and loves reading and math. "The first time he ever said 'no'
to me, I fell down laughing in delight," Ms. Geller said.
Autism disorders have only recently been recognized as the most
common serious developmental condition of childhood, affecting
roughly one in 165 children. Experts refer to it as a spectrum
because the complex neurological condition can range so widely
in severity.
Some people with autism suffer severe cognitive impairment,
others are savants. Many battle gastrointestinal problems and
show a strong preference for strict routines and repetitive
behaviours. But social deficits are its hallmark: impaired communication
and the inability to interact with others.
In April, a Supreme Court of Canada ruling effectively closed
the door on 28 families who wanted Ontario to pay for the expensive
treatment for their autistic children.
The case by the Ontario families was similar to one brought
in 2004 on behalf of autism-affected families in British Columbia,
in which the Supreme Court suggested that decisions about policies
on social programs belong in provincial legislatures and not
in the courts.
Having failed to see results in the courts, parents such as
Ms. Deskin of Hamilton feel they now have no choice but to pressure
Ottawa. Ms. Deskin, who has another son, Noah, 10, called Mr.
Levy a month ago and asked if he would join her fight. Mr. Levy,
a character-actor best known for his roles in films such as
American Pie and A Mighty Wind , studied up on the court cases
and medical evidence, and realized his decision was an easy
one.
"I started doing homework and realized that this is a good fight
here," said Mr. Levy, who yesterday met Michael for the first
time. "It's breaking families - the emotional trauma and expense
alone."
________________________________________________________

Treatments by province
Globe & Mail
Jun 13, 2007.
Page: L2
Section: Globe Life
Edition: Metro
Byline: Geoff Nixon
The availability and access of treatment programs for children with autism spectrum disorders varies widely across Canada.

Depending on family income, proximity to treatment centres and
the efforts of their family physicians, autistic children can
receive different levels of help and their outcomes can
vary.
In British Columbia, parents have a high degree of autonomy
when it comes to treating their kids. They have the option of
using up to $20,000 in government funds for their child's therapy
or they may opt to have therapists bill the government directly,
says Lindy Chau of the Autism Society of British Columbia. It's
still not enough, she says - especially when therapy costs can
run up to $60,000 a year.
In Ontario, parents can choose between therapy at regional provincial
centres or in-home therapists of their own choice - with both
options offering at least 20 hours of intensive behavioural
intervention therapy a week, says Marilen Miguel of Autism Ontario.
Ontario has had problems with children waiting up to two years
for treatment.
In the Atlantic provinces, there is generally less autonomy
in treatment choices but, in some cases, more guaranteed hours
of therapy. Christopher Dedde, an autism program co-ordinator
in Newfoundland, says that the province now provides autistic
children with up to 30 hours of applied behaviour analysis (ABA)
therapy a week paid for by the government.
Prince Edward Island's autistic children are budgeted up to
20 hours of ABA a week, with parents paying partial costs on
an income-adjusted scale.
And in Nova Scotia, autistic children have access to innovative
early intensive behavioural intervention (EIBI) treatment, a
practice involving the whole family, funded by the
government.
The downside, says Vicky Harvey, an activist and parent of an
autistic child in Dartmouth, N.S., is that since the EIBI therapy
program is relatively new, it is still expanding and has so
far been available on a lottery basis only.
__________________________________________
Eugene Levy spokesman for autism treatment
The Sault Star

Jun 13, 2007.
Page: B6
Section: Entertainment
Dateline: Toronto
Canadian actor and director Eugene Levy has signed on as a spokesman for autism and is calling for a national strategy to help those affected by the disorder.

Levy and Senator Jim Munson are holding a news conference in Toronto on Wednesday to speak about what they consider the need for affordable and accessible autism treatment.

"I feel extremely passionate about the need for a national autism strategy,'' Levy said. "Canada is blessed in so many ways but somehow some of our most vulnerable citizens are being wrongfully neglected. It is time to address this wrong and provide these individuals with the same access to medically necessary treatment that the rest of us enjoy throughout our lifetimes under our country's alleged universal health-care system."

Autism is a developmental disability resulting from a disorder of the central nervous system.
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IN BRIEF Parents won't have to pay for autism-funding suit
Globe & Mail
Jun 13, 2007
Page: A8
Section: National News
Edition: National
Toronto
A group of families with autistic children who launched a lawsuit
against the Ontario government and seven school boards won't
have to hand over $85,000 in legal costs to the province, an
Ontario judge has ruled.
There was nothing "frivolous" or "vexatious" about the $1.25-
billion lawsuit, Mr. Justice Maurice Cullity noted in his decision
released yesterday, adding that it would have been "unjust"
to penalize the families by ordering them to pay the costs.
__________________________________
Parents don't have to pay costs for Ont. autism funding lawsuit: judge (Autism-Lawsuit)
Canadian Press
Jun 12, 2007
By Maria Babbage
TORONTO (CP) _ A group of families with autistic children who launched a lawsuit against the Ontario government and seven school boards won't have to hand over $85,000 in legal costs to the province, an Ontario judge has ruled.

There was nothing ``frivolous'' or ``vexatious'' about the $1.25-billion lawsuit, Justice Maurice Cullity noted in his decision released Tuesday, adding that it would have been ``unjust'' to penalize the families by ordering them to pay the costs.

``It is not disputed that many of the parents have made significant financial sacrifices and have suffered serious financial consequences because of a lack of public funding for the programs they consider to be necessary for the educational and social development of their children,'' he wrote.

The families, who say they've spent their savings and taken extra jobs to pay for a costly treatment for their children, launched the lawsuit in 2004, alleging the government failed autistic kids by not providing access to the specialized treatment in school. The Intensive Behavioural Intervention therapy can cost between $30,000 to $80,000 per child each year.

Cullity rejected most of their claims in March, but the families are trying to appeal that decision.
Lawyers for the government and school boards had argued in court Monday that they were not asking for the full costs, and that the province would have been willing to wait for the money until after the appeal process was completed.

By deciding not to award legal costs, the judge was clearly indicating that the case should proceed because it's in the public interest, said David Baker, a Toronto lawyer representing the families.

``He did not use a cost order to force the plaintiffs to the sidelines, to deter them from proceeding by making it financially impossible for them to proceed,'' he said.

``So he's clearing the way so that they will ultimately have their day in court and have the case adjudicated on its merits.''

Taline Sagharian, one of the parents who launched the lawsuit and whose son is autistic, said the judge's decision came as a relief.

``It's not like we were able to plan and put aside money for (the legal costs),'' she said.
``How do you put aside money that you don't have? I don't know how we would have paid for it.''
While fighting the families in court, the Ontario government has publicly announced increased spending on the program to provide the IBI therapy.

But Tuesday's decision has given the governing Liberals a ``black eye,'' said NDP critic Shelley Martel.
``I thought that it was really outrageous that they would be seeking costs in the first place against these families who have children with autism,'' said Martel, who is also fighting the province to obtain the cost of its ongoing legal battle with the families who want the province to pay for IBI therapy.

``Today they were told it was clearly wrong, and I think in a lot of the public's mind, what they're trying to do to these parents and what they've been doing to other parents with children with autism is just dead wrong.''

The federal government has been urged by a Senate committee to develop a national plan to deal with autism, including new measures to help families saddled with huge bills for therapy. The committee noted that almost 50,000 children and 150,000 adults in Canada have autism.

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