[Andrew Kavchak]

Autistic children need funding if they are to become self-reliant
The Edmonton Journal
Dec 3, 2004
Page: A19
Section: Letters
Edition: Final
Byline: David Hryciuk

I am shocked and sickened by the Supreme Court's ruling that the provinces don't have to pay for therapy for autistic children. ("Autistic children doomed for life — angry parents: Court agrees health system has financial limits," The Journal, Nov. 20).

As a young man with Asperger Syndrome, which can cause some of the same behavioural problems as autism, I closely understand the need for autistic children to receive the treatment that they need to begin a successful life.

In provinces without government coverage of this therapy, the vast majority of parents with autistic children cannot pay the sum of up to $60,000 per year for these services.

If some provinces continue to deny these parents help for their autistic children, many of them will become needlessly institutionalized.

This puts an even greater burden on taxpayers because many of these children have the potential to live just as successfully as anyone else had they been taught the social and life skills needed for self-reliance.

Since the Supreme Court's ruling has overturned the lawsuit for this funding, it will only continue to add to the growing magnitude of the social injustice that we have in our country.

Former prime ministers Pierre Trudeau and Lester B. Pearson would probably roll over in their graves if they saw what kind of social system we have in the land of "justice" now, and we should all be ashamed.

The only way to make a "just society" for tomorrow is to help the less fortunate today.

Funding must be put forward to help people like autistic children of today, because otherwise it will backfire and come back to haunt us down the road.

David Hryciuk, Edmonton

[Andrew Kavchak]

Hi Folks,
I could not help but see this item in the papers. Now that Australia appears to use autistic children for its propaganda purposes about helping disabled people and then denies them entry into the country, would the BC Attorney General extend an invitation to the child? After all, it's only mild and Lord knows we don't have double standards in this country.

Poster boy can't stay
The Vancouver Province
Dec 3, 2004Page: A26
Section: News
Edition: Final
Dateline: SYDNEY

SYDNEY — The family of 12-year-old Indian boy Rophin Morris, chosen to appear on an Australian government-sponsored calendar honouring people with disabilities, has been denied permanent residency in Australia because of the child's mild autism, his father Jude said yesterday.

[Andrew Kavchak]

Autism therapy should be fully funded
Winnipeg Free Press
Dec 3, 2004Page: A15
Section: Focus
Byline: Freelance Writer
Scott Holod

RECENTLY expanded and improved programs for autistic
children may be in jeopardy, following a ruling last week by
the Supreme Court of Canada.
Parents in British Columbia had argued their children's equality
rights under the Canada Health Act were being infringed because
the B.C. government refused to fund medically necessary treatment
for their children. The Supreme Court ruled (in Auton v. British
Columbia) that there was no discrimination and the province
had no obligation to fund intensive behavioural therapy. This
therapy has been proven to be the best hope for children with
autism.

The court's decision was primarily based on wording from the
Canada Health Act and the British Columbia Medical Protection
Act (MPA). The Canada Health Act makes a distinction between
"core" and "non-core" health services that provinces must provide
universally to all Canadians. The B.C. MPA lists what constitutes
a "core" and "non-core" health service and who is qualified
to deliver such services. Unfortunately, intensive behavioural
therapy falls under the "non-core" category, thus making it
an optional service for government to provide.
Treatment
The treatment known as Applied Behaviour Analysis (ABA), also
called Intensive Behavioural Intervention (IBI), has quickly
become the treatment of choice by many families with autistic
children. The efficacy of the treatment has been thoroughly
proven by a vast amount of scientific research and is considered
"best practice" in many autism circles. Both the New York State
Department of Health and the U.S. Surgeon General consider ABA
the only recommended treatment for autistic children. It was
this treatment the B.C. families were fighting to have
funded.
Provincial governments have begun to grudgingly accept the merit
of ABA and to slowly expand funding for it. Even the B.C. government,
which did not have any program in place when the legal fight
with parents began six years ago, now has a modest program in
place that pays about one-third of the cost of autism therapies
for children under six years of age. In Manitoba, we are fortunate
to have a publicly funded ABA program available to pre-school
children with autism, as the government here has had more foresight
than its counterparts. It is frightening to think, however,
that governments may now use the Supreme Court ruling to restrict
funding for autism therapies.
What is lost in the legal wrangling is the lives of autistic
children. ABA costs up to $60,000 per year. Families have not
only been forced to sell their assets, fundraise and mortgage
their houses to pay for this treatment, but also to undergo
the financial strain and stress of continually fighting governments
to provide necessary services for their children. Families have
found a way to help free their children from the solitary confinement
of autism, only to have governments hide the key to the prison
gate.
Cost savings
The B.C. government has argued it can't afford ABA treatment
and to provide it would create financial chaos and long-term
debt. Yet there have been many cost analyses done which clearly
show ABA therapy results in long-term cost savings to government
and Canadian taxpayers. It is projected that without treatment,
as many as 90 per cent of autistic children could face institutionalization
throughout their adult life, at a cost of $100,000 per year.
Conversely, scientific studies show that as many as 47 per cent
of the children who receive this treatment will be able to attend
school with little or no support and go on to lead independent,
fully productive lives. An additional 43 per cent will make
substantial gains and require a significantly reduced level
of support throughout school and as adults. With the incidence
and diagnosis of autism growing annually, it's clear it would
be fiscal suicide to not provide effective ABA treatment to
these children.
The Canada Health Act states its primary objective is "…to
protect, promote and restore the physical and mental well-being
of residents of Canada and to facilitate reasonable access to
health services without financial or other barriers." Our organization,
Manitoba Families for Effective Autism Treatment, will work
with similar groups across the country to convince the federal
and provincial governments of the need to fully fund autism
therapy, and the benefits of doing so.
Scott Holod is a director of Manitoba Families for Effective
Autism Treatment.

[Andrew Kavchak]

Hi Folks,
If ever there was any doubt that the Auton ruling should be a concern for all Canadians because those suffering from other medical disorders and illnesses could no longer count on medicare, consider this news below regarding Ontario's Health Minister, Mr. Smitherman, and his recent promises. It is always an interesting exercise in mental gymnatics to try to figure out how bureaucrats and politicians find that saving a life is not "cost effective" in certain circumstances.
Andrew (Ottawa)

Smitherman reneges on Fabry treatment promise
The Ottawa Citizen
Nov 30, 2004
Page: A3
Section: News
Edition: Final
Byline: Sutton Eaves

Despite a promise that he "will make certain of coverage for Fabry," Ontario's minister of health yesterday would not agree to cover expensive treatment for the rare and fatal disease.

Instead, George Smitherman said he will wait for a second review process to finish before deciding whether to cover potentially life-saving enzyme replacement therapy, which costs between $240,000 and $290,000 per patient each year. A national panel of medical experts, the Canadian Expert Drug Advisory Committee, recently reviewed the only known treatment for Fabry disease and recommended provinces not pay the cost because the therapy is not "cost effective."

Fabry disease is a rare genetic disorder that kills most sufferers before they turn 50 by clogging up the heart and kidneys.

In a handwritten note to Kitchener's Donna Strauss, whose husband died from

Fabry disease last spring, Mr. Smitherman assured her that the province would pay for enzyme replacement therapy for Fabry patients as it already does for sufferers of similar diseases, Gaucher and MPSI.

"As you struggle to deal with such a huge loss I wish to assure you that I will make certain of coverage for Fabry," the letter read. "Don't let any stories about the drug's slow approval add to concern about coverage."

Yesterday, Mrs. Strauss and her daughter, Julia, a carrier of the disease, travelled to Queen's Park with other Fabry patients to hold Mr. Smitherman to his promise. Mr. Smitherman dodged the meeting, citing a scheduling conflict.

Wiping the tears from her eyes, Mrs. Strauss said she didn't understand what his intention was when he gave his personal guarantee of coverage for Fabry treatment in July.

"When he sent this letter to me, I felt wonderful. I felt he was going to stand by his commitment because he assured coverage for Fabry patients in Ontario. So I believed him. And I don't want to attack Mr. Smitherman, but I'm actually quite disappointed and angry right now."

[Andrew Kavchak]

Hi Folks,
I just had to post this story from a newspaper in Ontario that adds a bit of a twist on government priorities.
Andrew (Ottawa)

Befuddled by recent government actions
Sault Star
Nov 26, 2004Page: A8
Section: Editorial & Opinion
Edition: Final
Byline: Walt Putman

Two articles in the Nov. 20 Sault Star indicate something in our government is drastically out of kilter.

First is James Wallace's column, Government will fund sex-change surgery once tribunal says it must, that indicates the government is willing to pay for sex-change operations. This, in spite of delisting of optical care, physiotherapy and chiropractic services, and adding a medical premium for taxpayers.

Then comes the story, Top court rejects funding for autism, in which the Supreme Court of Canada ruled that early and expensive treatment for autistic children is not guaranteed by the Charter of Rights.

The government is willing to pay for voluntary sex changes while it abandons autistic children to whatever care parents can provide?

I am completely befuddled by the government's actions.

I am not affected in either case, except as a taxpayer.

Walt Putman,

Dacey Road

[Andrew Kavchak]

Hi Folks,
Press Release just issued by Scott Reid MP.
Andrew (Ottawa)

For Immediate Release
November 26, 2004

REID SPEAKS OUT FOR AUTISTIC KIDS

OTTAWA – Today in the House of Commons, Scott Reid, MP for Lanark-Frontenac-Lennox and Addington, tabled several petitions on the subject of autism spectrum disorder.

This comes at the conclusion of a week of Parliamentary attention to Autism. On Tuesday, Conservative Health Critic Stephen Fletcher, hosted an information session on autism. On the same day Mr. Reid and NDP MP Tony Martin (Sault St. Marie) held a press conference with several parents of autistic children on the Hill. Throughout the week, MPs of all parties presented petitions on the subject of autism and Intensive Behaviour Intervention therapy.

“I am happy to see such strong all-party support for autistic kids and their parents,” said Reid, noting that the House had given its unanimous consent for him to table an online petition with thousands of signatures, which did not meet the technical requirements for introduction in the House through normal channels.

A copy of today’s Hansard follows.

Petitions
Mr. Scott Reid (Lanark—Frontenac—Lennox and Addington, CPC): Mr. Speaker, I am honoured today to present a petition on the subject of autism spectrum disorder.
This terrible and life destroying condition affects 1 Canadian child in 195 and it is because of the grave importance of this issue that hon. members from all parties have been presenting petitions on this subject over the course of the past week.
This petition draws the attention of the House to the length of waiting lists for Intensive Behaviour Intervention therapy. This therapy can be life changing but it only works if it is done early and in some provinces parents must face waiting lists of a year or more. Therefore they must purchase the therapy privately or lose their children to autism.
As a concluding remark, I note that in addition to the petition that I am presenting today which went through the proper channels, I am in possession of an on-line petition containing several thousand additional names. This second petition is not admissible under House rules. However if there is unanimous consent, I would like to introduce this as well.

-30-

For more information or to speak with Mr. Reid, please call (613) 947-2277.

[Andrew Kavchak]

Hi Folks,
Someone asked before about whether there is a deadline for signing and sending in the autism petition to MPs. The answer, as far as I know, is that there is no time line or deadline other than anything we give ourselves. I suggest that we just keep 'em coming until every Canadian has had a chance to sign and every MP has been flooded with these autism petitions. We cannot stop until our kids get what they need and deserve and until Canada becomes the civilized country that it has the potential to be.
Cheers!
Andrew

[Andrew Kavchak]

Hi Folks,
Congratulations to the people who sent it in to Mr. Hiebert! Success! Now the rules are that the government has 45 days to respond.
Andrew

OFFICIAL REPORT (HANSARD)
Thursday, November 25, 2004

Mr. Russ Hiebert (South Surrey—White Rock—Cloverdale, CPC): Mr. Speaker, it is my honour to rise and present a petition on behalf of numerous families in my riding of South Surrey–White Rock–Cloverdale. The petitioners ask Parliament to amend the Canada Health Act to include, as medically necessary, therapy for children suffering from autism. They also ask Parliament to contribute to the creation of academic chairs at Canadian universities dedicated to the research and treatment of autism.

[Andrew Kavchak]

ATTENTION!!! BREAKING NEWS!!!

Hello My Dear Friends!

I just got a call from Scott Reid MP's office with incredible news. Scott Reid tabled the petition in the House of Commons today and brought with him into the House of Commons the downloaded internet on-line petition that I gave him during the news conference on Tuesday which contained at the time 2,500 signatures. Although the rules of the House of Commons do not allow the tabling of the electronic petitions at this time, Mr. Reid asked for the unanimous approval of the members in the House of Commons to allow it and permission was granted unanimously. This is something that apparently never happens, or at least, it is very rare. Thus, a press release will be issued shortly which I will post as soon as I get it. The Hansard transcripts from this morning will be available on Monday and I will post that too.

Keep those signatures coming!!!!

Cheers!
Andrew (Ottawa)

[Andrew Kavchak]

Hi Folks,
Please check out the article about the autism petition and the picture currently on the homepage of Tuesday's media scrum along with the "featbc.org" sign!
Cheers!
Andrew
http://www.oacrs.com/index.htm

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