[Andrew Kavchak]

Hi Folks,

Well, it is World Autism Awareness Day.

While one group is having a news conference in Toronto to outline the truly tragic circumstances that some families face and the apathy of those in a position to do something (see the article below), the federal government announced that it endorsed WAAD (see press release below).

The press release even quotes Mike Lake as suggesting that "It is important that Canadians realize both the challenges faced by families dealing with autism…" Could one of these chanllenges be politicians who don't do anything to help?

Various groups have got some things up on their websites about what they are doing today. The Autism Society of Canada (ASC) posted a message that it is joining with its "CASDA" Alliance members to "celebrate" WAAD. What's a "CASDA"? What is there to celebrate? Has the ASC actually achieved anything this year that has had a tangible impact on the lives of our kids?

Another organization that seems to be engaging in some activity today is the Autism Speaks Canada group (also with they acronym ASC). This is the organization that pushed for the Combating Autism Act in the U.S., but when their Canadian leader was asked by the Senate Committee looking into funding for autism treatment two years as to whether she supported an amendment to the Canada Health Act to include autism treatment in Medicare, her reply was "no". Why? What were her reasons? Because it would get bogged down in Parliament.

Anyway, it appears that Autism Speaks and Mike Lake are teaming up these days. Yesterday they were at a reception on the Hill. According to the Autism Speaks Canada website, it was to: " provide information on autism and request all-party support for the development of a comprehensive National Autism Strategy".

Well, how did that go? How can you ask for such a "comprehensive" strategy with an MP who has so far thwarted the effort and written a letter explaining why Shawn Murphy's bill (which would have resulted in the creation of a national autism strategy), was "bad law" and why he voted against it. Is there not some contradiction here? Is there not some hypocrisy? How credible is the effort? Who takes it seriously?

If that was not enough, Mike Lake had his son, along with the son of a Autism Speaks Canada board member, standing outside the doors to the House of Commons today handing out the autism puzzle piece pins to MPs as they entered the House.

Imagine being an MP and telling Canadians that the feds can't do anything meaningful to help Canadians with autism get access to treatment, and then using your own non-verbal son to distribute pins outside the House of Commons on WAAD. What is the point? On one hand he tells the MPs not to do anything because it is not their business ("we can't do anything as it is provincial!"), and on the other hand when the UN had declared a WAAD, suddenly he gets his son into a publicity stunt. Is it shameless behaviour?

The Autism Speaks Canada website also has some letters received from party leaders. My favourite is the Harper one which commends Autism Speaks Canada for providing a "strong voice". Yeah, the voice that said "no" to autism treatment in Medicare. The one from Ignatieff is funny too. Apparently the Liberals Party supports an initiative to "…provide better coordination of federal assistance…" What federal assistance? Really. I want to know. What federal assistance?

These WAAD days are interesting if for no other reason than to see what kind of creatures see opportunities to come out into the light. There may even be a speech or two in Parliament today.

What a contrast between the events in Toronto and Ottawa (see below). Anyways, I wish the folks in Toronto good luck. They are the real leaders and the strong voice of the autism community on this day.
____________________________

Critics accuse Ont. of inflexible autism benchmarks

Updated: Wed Apr. 01 2009 8:09:32 PM

The Canadian Press

TORONTO — A six-year-old autistic girl is being denied key treatment by the Ontario government in an arbitrary move aimed at reducing wait lists, critics charged after she was taken off the therapy while her twin stayed on.

"Delanie is being denied her basic right to develop to her full potential," said Hamilton resident Paul Ceretti, the father of autistic twins who has just seen treatment cut for one of his two daughters.

"I cannot imagine one of my girls receiving treatment and the other being left behind."

Even though Delanie Ceretti began communicating and learning skills after starting treatment 16 months ago, her family was told this week she wasn't learning fast enough to qualify for IBI, or Intensive Behavioural Intervention treatment.

The Ontario Autism Coalition worries Delanie's case could be an indicator of things to come, and the group is concerned other children will be thrown off the program through rigid and arbitrary benchmarks.

"The provincial government seems bent on kicking kids out of the autism intervention program faster than they're taking them into it," said association spokeswoman Laura Kirby-McIntosh.

McIntosh, who is the mother of a nine-year-old autistic boy, correctly guessed the Liberal government would respond to Ceretti's plea Wednesday by noting there is no longer a cutoff age of six for children with autism to stay in programs, and to point out it has tripled funding since coming into power.

But she argued not all of that money has flowed, and the optics of Delanie's situation "are a little bit creepy."

"Delanie and her twin sister turned six on Sunday," McIntosh said.

"We've now moved to a system of benchmarks, and here we have a six-year-old girl who's been cut off from treatment."

Before receiving treatment, Delanie had no useful communication skills, would hurt herself by banging her head, lashed out at others, and only communicated by grabbing people and crying.

She now uses a picture board and sentence strip to communicate, sits for long periods of time, follows simple instructions and is much less aggressive.

The decision to cut off treatment came with little warning or explanation, and it's a diagnosis Delanie's care providers and psychologist disagree with.

"Delanie has the potential to excel if given the opportunity," Ceretti said.

She "is not slipping though the cracks of the system, she's being shoved through purposefully," said Ceretti, who worries his daughter will regress or injure herself if put in a regular classroom with no support.

Delanie's sister Mackenzie is still in the program, but has recently undergone her own assessment.

As he awaits those results, Ceretti is asking the government to reinstate Delanie's treatment because he believes she needs additional therapy before she can fit into a classroom setting.

Premier Dalton McGuinty said he understands the girls' father wants the best for them, but he stands by the province's decision.

"I just know a little bit about this case, but I know that there was a professional judgment made that one of the daughters was well enough … to go on to the usual academic program, and the other one required continuing special supports," he said.

"I can't really second-guess the professional expertise that went into making those kinds of judgments."

Children and Youth Services Minister Deb Matthews said all benchmarks are still under review, and she denied they are being used to disqualify children, adding the province is working to provide more transparency and consistency to the selection process.

"It's important to understand that with IBI therapy, kids move in and kids move off, and that happens everywhere," Matthews said.

"Decisions, clearly, are being made by clinicians about when it's time to move off. … It's not up to politicians to make those assessments."

_______________________________________

Government of Canada Endorses World Autism Awareness Day

OTTAWA, ONTARIO–(Marketwire – April 2, 2009) – On behalf of the Government of Canada, the Honourable Leona Aglukkaq, Minister of Health, today announced that April 2 will be recognized as World Autism Awareness Day in Canada.

"The Government of Canada is pleased to recognize World Autism Awareness Day and to pay tribute to the many individuals and families in Canada who struggle with the disorder every day," said Minister Aglukkaq. "We join many nations around the globe in marking this day and using it to raise important health and social issues related to autism."

"It is important that Canadians realize both the challenges faced by families dealing with autism and the incredible uniqueness and creativity of individuals diagnosed with this mysterious disorder," said Mike Lake, Member of Parliament for Edmonton – Mill Woods – Beaumont. "Being better informed will contribute to better decision-making and a greater understanding of how to interact with people who have autism, in ways that enrich all of our lives."

Autism spectrum disorders (ASD) affect approximately one in 150 children in Canada. It is a complex and lifelong condition with a broad spectrum of symptoms that can range from mild to very severe. In all cases, ASD affects a growing child's behaviour, social interaction abilities, and communication skills.

Research continues to look for a better understanding of the causes of ASD and the most effective treatments and interventions. The federal government recognizes that such information is essential for families of affected Canadians and therefore contributes to this important work.

For example, in October 2007, Health Canada approved $1 million over five years to support a National Chair in Autism Research and Intervention at Simon Fraser University. Since 2000, the Canadian Institutes for Health Research have also provided $21.5 million to research effective treatments and, ultimately, cures for autism. We are confident that these efforts and other initiatives will enhance our knowledge and understanding of this condition.
_____________________

[Andrew Kavchak]

Hi Folks,

Well, there was a gathering in the West Block on Parliament Hill today in the lead up to the big day tomorrow. A notice had been sent to all MPs, Senators, and their assistants, which read as follows….
_________________

Attention all Members of Parliament, Senators, and Assistants

Come celebrate World Autism Awareness Day
April 1, 2009
3:00-5:00 pm.
200 West Block

Senator Jim Munson, with Members of Parliament Peter Stoffer, Glenn Thibeautl, Mike Lake, Shawn Murphy and Luc Malo, invite you to come learn more about Autism Spectrum Disorders (ASD).

You will have the opportunity to meet members of the steering committee of the Canadian ASD Alliance. They represent seven organizations working in the areas of advocacy, awareness, education, service delivery, and research.

Drop in for coffee, tea, and cookies…along with a good dose of awareness!

R.S.V.P.
…..
___________________________

Well, I have always been particularly grateful to Senator Jim Munson and MP Peter Stoffer. Both are our champions on Parliament Hill.

Shawn Murphy is a special case. Although he tabled a Bill for a National Autism Strategy that was voted on and defeated, I got the impression he never really understood the issues or the background. When I met him on the street in Ottawa after the failure of his Bill he told me that the next step for public policy development in the area would have to come from the courts. When I told him that the SCC had already rejected the matter and referred it to the legislatures, he then corrected himself and said that he meant "human rights tribunals" type of courts. Sure Shawn… You've obviously thought this one through…

I don't know who Glenn Thibeault and Luc Malo are, but I heard there were some new MPs who are eager to get involved in this file. Perhaps it is them. Good luck to them. However, if they are starting by participating in autism events that headline Mike Lake, then they are not going to go far.

Amazing, eh? A father of a kid with autism in the House of Commons who writes a letter for use by all Tories to explain the BS arguments of why he and the government MPs were voting against Shawn Murphy's Bill, but they both then appear on the banner to invite MPs to an autism "celebration".

And what are they celebrating? What have they done to help the autism community that is worthy of celebration? Someone please tell me.

As far as I can tell, not only has Mike Lake not done anything at the federal level to actually help our kids get access to treatment, he generates and disseminates government excuses for inaction and lack of leadership. How does it rub on his conscience that the Tories could run in an election on a platform of creating a National Cancer Strategy, and then refuse to actually create a National Autism Strategy (notwithstanding their own voting in favour of the non-binding motion of Andy Scott's)?

And what is this "Canadian ASD Alliance"? Who are their members? And what are their messages? What has that Alliance's goals and activities been and what have they accomplished? If it was to convince the government to set up a directorate in the Public Health Agency of Canada to monitor ASD, the government recently answered "NO" in the Senate to a question from Senator Munson. Is that what they are celebrating?

Cookies. Celebration and cookies. With Mike Lake.

In the U.S. even the worst President in the history of the U.S. signed the Combating Autism Act and committed the U.S. government to spend US$1 billion on research, detection, treatment, etc.

And in Canada? Celebration and cookies with Mike Lake.

I received an invitation but did not go. I would rather see them arrange for some autistic kids to be there and ask the MPs who show up to spend an hour with a kid who has autism. Just one hour. With no help from anyone. That would really raise some meaningful awareness. Not the cookies and milk kind.

[Andrew Kavchak]

Hi Folks,

Well, the second annual World Autism Awareness Day is coming up fast…are you ready for all the bulls**t that will likely come from Ottawa?

As you may know, Senator Munson recently tabled a Bill to have the government declare an annual autism awareness day. Well, could it be that the bill is unacceptable to the government in its current form? What could the problem be? Ot is it problems?

Perhaps a reference to the 1 in 166 prevalence rate? Well, gee, that's what the CDC said years ago before it said that the prevalence rate was 1 in 150! Perhaps the bill should specifically refer to the CDC since the Canadian health authorities have no idea what the prevalence rate is. Is that the only problem? Probably not. What about the reference to the fact that there is no national strategy to deal with the autism epidemic, or phenomenon, or whatever you want to call it? Perhaps the government does not like that the strategy thing be discussed. Oh sure, we can have a strategy or heart health, spinal cord rehab, aids, cancer, etc….but just not autism. That would be impossible, right? Why exactly? No one seems to be able to give a straight answer apart from saying "it's provincial".

Rumour has it that there will be at least two press conferences in Ottawa over the next two days to discuss autism. Might one be a plea for a bill to be passed? Might another be by the Autism Speaks organization? And what about Mike Lake? What's he doing to try to pretend this week that he is doing something for autism while really not doing anything. Could it be that he apparently is attempting to contact a loose network of autism activists who are seeking to hold a press conference and is trying to invite them to a meeting, but that there is at least one activist that he does not want to come to the meeting? And what is the purpose of the meeting that he wishes to have? After not doing anything for autism all year, why this sudden meeting? Oh, I know, I know. He walked at the Autism Speaks walk in Edmonton last year or something. Sorry, I guess he did do "a lot" for autism.

This all reminds me of a situation a few years ago when the day before a rally on the Hill to mark the anniversary of the Auton decision the Health Minister had a press conference and announced a five-point plan (you remember, the one with the website). Well, none of the rally organizers were invited to the press conference, however, there were three people on the stage behind the Minister during the press conference from the autism community. The leader of the ASC, and two people from the Ottawa English and French chapters of the Autism Society of Ontario. I gather that the lady from the French chapter had been invited to participate but had not been informed about the provisions of the announcement until it was a "fait accompli". Well, well….played like a fiddle. And then the Minister could say that he consulted and had the support of the "autism community".

What goes on over the next two days behind closed doors and at the podium in Ottawa may be interesting…

However, on a separate and possibly positive note, a google news search on "autism" today will reveal a press release of a new organization in Ontario that will hold a press conference at the Ontario legislature to announce a new initiative to get access to ABA treatment. Might a new generation of parents whose kids were just introduced to the joy of waiting lists be starting a new round of parental activism? Stay tuned.

[Andrew Kavchak]

Hi Folks,

Well, something was reported in the news a few days ago that has had me thinking (see article below).

Back in September 2004 the Paul Martin Liberals were holding a federal-provincial Health Care Summit and negotiating a $40 billion dollar health accord (which included service standards for specified medical procedures).

I was protesting the lack of autism treatment in Medicare outside the conference centre when I noticed Steven Fletcher come out with his assistant and give a media interview. I then approached him and gave him some literature about autism and pleaded for his help as he was at that time the Health Critic of the opposition Conservatives.

Several days later he phoned me and told me he read over the material and had "no idea" about the discrimination against autism in the system, etc. I subsequently met with him in his office and he came to some of our rallies. But guess what? By the time his party assumed the reigns of power, he had visited the St-Amant Centre for Autism in Manitoba (the same one that the Nova Scotia surgeon with a child with autism moved to last summer and made a splash about it in the media). Mr. Fletcher told me that the St-Amand folks told him there was "no problem" and he suggested to me that the autism community has got to get their act together before the feds will even recognize a problem. Gee, thanks to the folks in Manitoba and thanks to Mr. Fletcher for his understanding, national perspective on things, ability to put things in context, and his leadership.

It is always a shame when those most familiar with our challenges turn out to be further obstacles rather that assets, and Mr. Fletcher shaped himself up to be about as useless to the autism community as Mike Lake, the Edmonton MP who has a child with autism and who turned into the federal government's parrot with the "it's provincial" line.

Now, I want to be clear about something I once told Mr. Fletcher. On a personal level, I admire his courage greatly and believe his personal story is a remarkably inspiring one. In fact, I consider it to be in the same league of Canadian achievements as that of Terry Fox. Mr. Fletcher once said in the media that he "would rather be paralyzed from the neck down than the neck up". Interesting, eh? I quoted that to many folks that I have had discussions with about autism and many don't understand it. But what about the consequence and meaning of that statement and the thought of helping those who are paralyzed from the neck up and who are not getting any help from Medicare (notwithstanding the Manitoba centre's conviction that there is no problem)?

Well, sometimes in life what goes around comes around. The autism community has resorted to litigation as a means of last resort to get its fair share. Although numerous courts agreed with the claims of our community, the current incumbents on the Supreme Court of Canada (SCC) have not seen disability rights as a particularly important matter deserving equal treatment under the Charter. As you know, the Auton case in November, 2004 was a huge disappointment.

About two years ago Mr. Fletcher announced with Prime Minister Harper the creation of a "National Strategy" on spinal cord rehabilitation. Let there be no doubt that this is a good thing that deserves support, regardless of whether or not there is a centre somewhere in the country that says that there is "no spinal cord rehabilitation problem".

Of course, Mr. Fletcher can talk about that condition with authority and it should come as no surprise that he may have lobbied and agitated somewhat for the strategy with greater vigour within the Conservative caucus and the Cabinet once he obtained his seats there.

But Mr. Fletcher has his own concerns with the lack of assistance from the governments regarding his condition for which there is currently no cure. The financial burden relating to his condition is significant. Sound familiar? As a last resort, he went to court. And finally he appealed to the SCC. And they rejected his claim and won't even bother to hear the case. Sound familiar?

And where to now? Is there a possibility that the disabled community with some common interests may acknowledge each other's problems (rather than saying that there is "no problem" just because someone somewhere is satisfied with the status quo)? A national disability rights statute perhaps? Is there a chance that Mr. Fletcher may lead the charge for such legislation? Might the Obama administration activities in these areas serve as a model that our federal government may acknowledge and follow? Or do we have to wait for new appointments to the Cabinet? And new appointments to the SCC? So much potential, yet so much underperformance and wasted opportunities… Hopefully, something good may come of this latest setback for Mr. Fletcher. Once the initial shock and disappointment wear off, perhaps our country's leadership can start working together with the disability community to make this country a better place for the disabled.

__________________
SCC won't hear paralyzed MP's suit against Manitoba
Updated Thu. Mar. 26 2009 10:57 AM ET

The Canadian Press

OTTAWA — A paralyzed Tory MP has lost a bid to have the Supreme Court of Canada hear his case against Manitoba's public insurer.

The court refused Thursday to hear Steven Fletcher's appeal against a decision by the Manitoba Public Insurance Corp., which denied him more money for full-time care.

As usual, the court gave no reasons for its decision.

Fletcher, a Manitoba MP and junior cabinet minister, was paralyzed from the neck down in a 1996 accident in which his car hit a moose.

He requires round-the-clock attendant care, which his lawyer said costs more than $100,000 a year. The public insurer provides only $3,000 a month in such cases.

Lawyer Sidney Green said bureaucrats were punishing Fletcher because of his Conservative politics.

He sued for more compensation, but was denied. The Manitoba courts refused to hear his appeal.

Thursday's Supreme Court ruling effectively ends the case.

Fletcher was elected to the House of Commons in 2004, the first quadriplegic to win a seat. He was re-elected in 2006 and 2008.

Last October, the 36-year-old was given a junior cabinet post as minister of state for democratic reform.

[Andrew Kavchak]

Hi Folks,

And from the "Where are they when you need them?" department, here comes this latest story…

Remember the guy last year who ran across Canada to raise awareness of autism? Well, I met with him when he reached Parliament Hill and although I generally support anyone's efforts to raise autism's profile, it did not take me long to realize that his understanding of the discrimination in healthcare system against all people with autism, and the nature and history of the public policy debate (including the litigation) was not particularly profound.

However, the point that got me somewhat annoyed was when he issued a "newsletter" after running through Ontario's cottage country during the summer. Along with the pictures of him standing beside provincial and federal politicians, his newsletter thanked the politicians for their outstanding support (!). I assumed this expression of gratitude and reference to support resulted from his being invited to photo-ops at the country fairs and being fed some bar-b-q hot dogs or something. Of course, these same politicans never gave our community the kind of support we really needed in the legislatures and there don't appear to be any signs of that changing, notwithstanding the photos and hot dogs.

So now that the run is over (and I gather from the news footage that only a small group of people showed up in Victoria to witness his finishing the run) the team has tried to organize a "gala" in the most populated urban area in the country. And now, just a few days before the scheduled event it is being "postponed" (see below)…due to lack of interest, not enough ticket sales and financial risk.

But wait! Where are all those politicians (and their teams) that previously offered all that outstanding support? Where are they when you need them?
_________________

Help Jonathan Howard Turn Children's Dreams Into Abilities

We Regret to Advise You
Due to Insufficient Advance Ticket Sales
We Are Postponing the March 25th Celebration
In Support of Autism Awareness

Dear Friend
As much as we wish it wasn't so, we have reached the inescapable conclusion that the current general economic conditions have substantially slowed ticket sales to the March 25th Run the Dream gala. Despite the worthiness of the cause and the support received from current ticketholders and sponsors, the organizing committee does not believe it is prudent to proceed at a financial risk.

On this basis, we are postponing the event to allow us to build the participation level to the point that the maximum benefit is achieved. We are not abandoning the objectives of the event and we'll be back in touch with everyone regarding a rescheduled date and other information. One of our committee members will be in contact with anyone who has purchased tickets to discuss how they would like to handle this postponement. We sincerely apologize for the inconvenience to those people who have made commitments to attend the gala on March 25th.

If you have any questions please feel free to contact me at 888-507-5885 ext. 2 or bill.robertson@runthedream.ca.

Your understanding and ongoing support is appreciated.

Bill Robertson
Chairman

[Andrew Kavchak]

Hi Folks,
Autism came up twice in the Senate yesterday. For those who are interested in the movement of some autism advocates to get either Health Canada or the Public Health Agency of Canada to create an autism "division" or "branch" or whatever, the government's official reply is: "no".
————————
Senate Hansard
Tuesday, March 3, 2009.

Delayed Answer to Oral Question
Hon. Gerald J. Comeau (Deputy Leader of the Government): Honourable senators, I have the honour to table a delayed response to an oral question raised by Senator Jim Munson on February 5, 2009, concerning health, autism.

Health
Autism
(Response to question raised by Hon. Jim Munson on February 5, 2009)

The federal government is undertaking a range of initiatives to help address Autism Spectrum Disorder (ASD); for example, it encourages high-quality scientific research while supporting the sharing of best practices and communication amongst partners, stakeholders, and the population at large. Activities in this regard will improve knowledge about autism so that future action by provincial and territorial governments, service providers, and families will be well informed.

For example, on October 20, 2007, the Government of Canada announced $1M, over five years, for a National Chair in Autism Research and Intervention at Simon Fraser University. This chair will support research regarding interventions for individuals with autism.

As well, Health Canada provided $50K in 2007/2008 to the Canadian Autism Intervention Research Network (CAIRN) web site to support the development of updated material and the translation of information into French. Canadians can now log onto the popular and respected site and access French or English summaries of autism research — presented in terminology that is useful to families who need it. An additional $75K is being provided to CAIRN to enhance the content of this website, conduct a survey of research priorities and to host a conference to support research across this country.

Further, since 2000, the Canadian Institutes for Health Research (CIHR) has committed approximately $27.1M for autism-related research, and, in November 2007, a national symposium on autism research was held to share knowledge and to support dialogue on future research priorities. The report from this Symposium is now available on the CIHR web site.

In addition, the Public Health Agency of Canada has completed a consultation on ASD surveillance. The results will be incorporated into the Agency's planning process for new work on national surveillance of developmental disorders. This work will start in earnest in the spring, with the new fiscal year.

While screening and treatment services are a provincial/ territorial responsibility, the Government of Canada is committed to supporting the development of the autism evidence-base, and is confident that these activities will contribute to and enhance Canada's capacity to address this important issue.

In December 2008, the Minister approved a contribution of $147,863.00 to Queen's University to expand their existing ASD surveillance system to include children in Manitoba (Queen's currently collects data from Southwestern Ontario, Prince Edward Island, and Newfoundland and Labrador). This is another step that towards creating a national surveillance system for ASD, which is a key request from autism stakeholders.

There is no immediate plan to establish a division of autism within the Public Health Agency of Canada. The Minister wishes to assure her colleagues that the health portfolio acknowledged the importance of ASD, and as indicated by the above noted activities, is an issue that is being taken very seriously by this Government.

____________________

World Autism Awareness Day Bill
Second Reading
On the Order:

Resuming debate on the motion of the Honourable Senator Munson, seconded by the Honourable Senator Milne, for the second reading of Bill S-210, An Act respecting World Autism Awareness Day.

Hon. Wilbert J. Keon: Honourable senators, I am pleased to rise today in support of Bill S-210, which establishes World Autism Awareness Day in Canada, to be celebrated each year on April 2. We are fortunate in this chamber to have had an opportunity to learn a great deal about autism in recent years. In particular, I am referring to the study undertaken by the Standing Senate Committee on Social Affairs, Science and Technology, on which I was greatly honoured to serve as deputy chair, and the resulting report, Pay Now or Pay Later, Autism Families in Crisis. Autism has also been kept on the agenda through the nurturing efforts of Senator Munson.

I would be remiss if I did not point out that the Senate study on autism was the result of a motion by Senator Munson, in which he called the attention of the Senate to the issue of funding for the treatment of autism. I would like to thank Senator Munson not only for his work in this area but also on behalf of all Canadians with intellectual disabilities. These are people who offer much to the richness of our society but who lack a voice and far too often are without advocates in the community.

I also want to thank Senator Oliver who seconded this bill. He has spoken often on the topic, both inside and outside this chamber. Such cross-party cooperation is an indication of how members of this chamber can join together effectively on matters of great importance.

Through the studies and work undertaken in the Senate, we have had the good fortune to learn much about autism, its impact on families and communities and how it is treated by medical professionals, as well as other individuals and government.

We have learned that autism itself is complex. Autism spectrum disorder, ASD, is a neurological difference that begins in early childhood and persists throughout adulthood. ASD includes five pervasive development disorders, the most commonly known of which are classic autism and Asperger's syndrome.

As a spectrum disorder, the symptoms range from mild to severe, but generally include difficulty with social skills, communication problems, behavioural issues such as repetitive movements and restrictive interests, as well as difficulty with audio and visual processing. Some people who are more severely affected lack any ability at all to communicate with others, and may exhibit forms of extreme aggression and seek to injure themselves.

We learned that the prevalence of autism has increased greatly in recent years as the preamble to this bill states, "the number of Canadians diagnosed with autism spectrum disorders has grown by 150 per cent in the last six years."

Such increases translate to some 48,000 autistic children up to age 19, and 144,000 adults in Canada — a staggering number. By way of illustration, adding together the men, women and children represented, we would have a city almost as big as Kitchener, Ontario. That number would not include the family members of these individuals whose lives are so deeply affected by autism on a daily basis.

I remind the chamber that during the committee hearings, we were told that families must adapt their whole lifestyle to meet the needs of children who have autism. If we were to include family members of people with autism in the numbers I have given to honourable senators, we would have a more complete picture of the extent to which autism impacts on the lives of Canadians.

We learned about the wide variety of ways to manage the treatment of autism, from applied behavioural analysis to intensive behavioural intervention, to an integrated multidisciplinary approach involving biomedical and nutritional treatments, in addition to behavioural interventions.

We learned from the experiences and concerns of people who have autism that their families and others — such as clinicians and researchers — live lives immersed in a world that is, generally speaking, foreign to us. Access to treatment is uneven across the country, in part because of issues relating to funding, wait times and disability supports. As well, it is the case, as with the rest of our health care system, that treatment is in the hands of the provinces and territories, which compounds the inequality.

Generally speaking, medical wait times are exacerbated by the continuing reliance on paper records, as opposed to electronic records. The article in The Globe and Mail on June 14, 2007 by columnist Andre Picard gave an all-too-accurate description of how the health care system far too often ends up working so inefficiently because of paper records.

I am pleased that the government saw fit to include $500 million in the budget to address this problem. We will see enormous progress over the next two years with electronic records for half our population.

A major concern in our study on the funding of autism treatment was the high cost to the families of treatment — sometimes as high as $60,000 per year. The lack of adequate funding and high cost of treatment can be an impenetrable barrier for many families.

As Jason Oldford of Fredericton, New Brunswick argued before our committee:

. . . if you pay for it now, look at the return you get on your investment. The people with autism will get out in the real world and get jobs, and that will stimulate the economy. Or you can pay later, which means they will go into group homes and it will cost the taxpayers a lot of money to keep them there.

I have spoken many times on the need for research because we really do not understand what this entity is. Research is the foundation upon which proper care must be built. Generally speaking, if the research is not adequate, the treatment on which it is based will also be inadequate.

We are well aware that a great deal of work is taking place, and the Senate report reminded us of some of the broad resources that have been directed to autism research, stating:

According to the Canadian Institutes of Health Research (CIHR), funding for autism-specific research has increased from just over $1 million in 2000-2001, to $3.5 million in 2005-2006. In total, CIHR has invested $15 million during this period. The Committee also heard that Genome Canada, the Canadian Foundation for Innovation and Health Canada invest federal funds into autism research. Witnesses commented on the excellence of the Canadian autism research community, highlighting collaborative spirit and collegiality.

I want to point out a few examples of the support for autism research and work that is being undertaken. In October 2007, our government announced the establishment of a national Chair in Autism Research and Intervention at Simon Fraser University with $2 million in funding from the provincial and federal governments. The Autism and Developmental Disorder Laboratory at Simon Fraser University is led by Dr. Grace Iarocci, who is studying cognitive and social development among children and adults with autism and other development disabilities.

On the other side of the country is the Joan and Jack Craig Chair in Autism Research at Dalhousie University, led by Dr. Susan Bryson. Dr. Bryson was a founding member of the Canadian Autism Intervention Research Network, and worked to establish the Autism Research Unit at the Toronto Hospital for Sick Children.

Senator Oliver pointed out the fine work being conducted through the Craig Chair and the tremendous support that Joan and Jack Craig have thrown behind this research.

Another example is Kilee Patchell-Evans Autism Research Group, which is a Canadian multidisciplinary team located at the University of Western Ontario in London and directed by Dr. Derrick MacFabe.

Scientists are looking at the causes of autism, which could include genetics, brain function and prenatal factors. Other factors could be environmental toxins, viral infections and immune system deficiency.

In addition, the Autism Research Training Program recruits and trains researchers in the field of autism in such medical disciplines as genetics, brain imaging, epidemiology, neurology and psychology.

Allow me to put on my other hat for a moment, which is the one I have worn as Chair of the Standing Senate Committee on Population Health. I believe it is highly appropriate to look at autism through the lens of population health and the determinants of health.

As honourable senators are aware, the committee has been involved in examining the impact of multiple factors and conditions that contribute to the health of Canada's population — known as the social determinants of health.

These determinants include factors such as income, social status and education, working conditions and social support networks. This work involves not only understanding the impact of social determinants of health, but also translating that information into policies that will improve the overall health of Canadians in general, and in this case, provide more opportunity and hope for people with autism.

Dr. John Lynch from McGill University called for such policy-relevant research when he came before the committee and said:

I would also suggest that there is a fairly poor evidence base on what are most effective and most cost-effective interventions. I do think we can build a better policy-relevant evidence base, and that should be the priority in Canada.

For an example of work in this area, I would like to draw the attention of honourable senators to Columbia University sociologist Peter Bearman, who received a $2.5 million National Institutes of Health Director's Pioneer Award to support the study of the social determinants of autism. A September 2007 press release from the Institute for Social and Economic Research and Policy at Columbia University quotes Dr. Bearman as stating:

The autism epidemic is a huge and complex puzzle which impacts hundreds of thousands of children and families. . . . It is one of the most pressing population health problems of our time. The Pioneer award makes it possible for us to think new thoughts and take big chances in our understanding of the epidemic and hopefully to make major contributions to public health.

A little closer to home, we see the work of Dr. Peter Szatmari, a child psychiatrist who works with children with autism. He is Director of the Offord Centre for Child Studies and a founding member of the Canadian Autism Intervention Research Network. According to the 2008 Biennial Research Report of Hamilton Health Sciences, he is conducting a:

. . . multi-site, cross-Canada study of the developmental trajectories of very young children with autism/PDD from the point of diagnosis to their transition into Grade 1, a critical point in their lives. The study will attempt to identify important factors in the child, family, and community and in the interventions they received that were associated with the best outcomes.

Also involved in this extensive study are investigators Susan Bryson at Dalhousie; Eric Fombonne at McGill; Pat Mirenda at the University of British Columbia; Wendy Roberts at the University of Toronto; Isabel Smith at Dalhousie; Tracy Vaillancourt at McMaster; Joanne Volden at the University of Alberta; Charlotte Waddell from Simon Fraser University; and Lonnie Zwaigenbaum, also at the University of Alberta.

The depth and breadth of this research is precisely what is needed to more fully understand autism and the mechanisms that are associated with good outcomes for children. However, the need for research must constantly be supported. As an example, 40 years ago, we had little understanding of heart disease, strokes, cancer and type 2 diabetes. Today, about 50 per cent of heart disease, strokes, cancer and type 2 diabetes are preventable in the first place and the remainder are curable in large numbers of cases. This is all because of the knowledge base that unfolded over the last 40 year through Canadian and global research.

We must now do the necessary research to understand what autism is; then we must eliminate it as we did with smallpox and polio.

In addition to these efforts, there is a great role for Ottawa to play in the area of education and public awareness. During the committee's study, it was made very clear to us that there is a gap when it comes to an awareness about autism. The committee report stated that:

Throughout the course of the hearings on this difficult subject, witnesses identified a clear need for a national public awareness campaign. The Committee agrees that there is a great lack of understanding among Canadians about autism and its spectrum of disabilities and feels that a greater understanding of ASD by all Canadians could help to reduce the stress experienced by these individuals and their families.

Public awareness is vitally important in all areas of health, from encouraging people to garnering support. This need for public awareness brings us to the point of Senator Munson's Bill S-210, which will designate the second day of April each and every year as World Autism Awareness Day. It was celebrated for the first time this year, as the United Nations stated in a press release, "to highlight the need to help improve the lives of children and adults who suffer from this disorder."

In November 2007, the United Nations General Assembly unanimously declared April 2 as World Autism Awareness Day. Canada has, of course, already joined in the celebration of World Autism Awareness Day. This past April 2, former Minister of Health Tony Clement issued a press release.

The Hon. the Speaker pro tempore: I am sorry to interrupt the Honourable Senator Keon. Does he wish to ask for more time?

Hon. Gerald J. Comeau (Deputy Leader of the Government): He may have five more minutes.

The Hon. the Speaker pro tempore: Is it agreed?

Hon. Senators: Agreed.

Senator Keon: His press release marked the "first annual Autism Awareness Day launched by the United Nations and recognized worldwide." However, our participation was by virtue of membership in the United Nations.

Through the passage of this bill, we are showing that we truly respect Canadians with autism. I would like to remind honourable senators that the conclusion of the committee's report states:

Members of the Standing Senate Committee on Social Affairs, Science and Technology are profoundly aware of the challenges facing those with autism and their families.

The recognition of World Autism Awareness Day is a clear and unequivocal affirmation of that sentiment.

The Hon. the Speaker pro tempore: Does any senator wish to continue debate?

It was moved by the Honourable Senator Munson, seconded by the Honourable Senator Milne, that Bill S-210, An Act respecting World Autism Awareness Day, be read the second time now.

Is it your pleasure, honourable senators, to adopt the motion?

(Motion agreed to and bill read second time.)

Referred to Committee
The Hon. the Speaker pro tempore: Honourable senators, when shall this bill be read the third time?

(On motion of Senator Munson, bill referred to the Standing Senate Committee on Social Affairs, Science and Technology.)

[Andrew Kavchak]

Hi Folks,

Well, below are some articles about yesterday's SCC decision. The first one includes some quotes from Jean Lewis and me.

On a personal note, today is my last day in the current job that I have had for the past number of years and I will be starting a new job on Monday. It has been five years since my son was diagnosed and five years of lobbying and advocacy. I wish to thank leaders of FEAT of BC and all the FEAT BC supporters for the leadership and activities that you have undertaken over the past number of years. You guys are true leaders with a vision and lots of courage.

I also wish to thank you for permitting me to post so frequently on this board, which I often consider my blog. As I begin a new job I hope to turn several pages in my life and search for a renewal of sorts. I wish you all and your families a very happy holiday season and all the best in the New Year. You guys are great!

Andrew Kavchak
Ottawa
_________________________
Ottawa Sun
Friday, December 5, 2008.
Top Court Rejects Appeal for Autism Funding
By SCOTT TAYLOR, SUN MEDIA

"Don't give up."

That's the message a local Tory MPP has for parents of autistic children after the Supreme Court rejected their appeal for Ontario school boards to offer specialized therapies for their kids.

The families had hoped to sue the Ontario government for discrimination against their children, arguing expensive private autism programs are impossible to afford and should therefore be funded by the government.

The decision was released without comment.

"It's been a long road for the families, a stressful one," said Nepean-Carleton MPP Lisa MacLeod, who has championed the cause. "There's a huge financial impact to having a child with this type of disorder."

But with the legal door closed, MacLeod said the political one might be opening.

"If there is a silver lining to this decision, it's that the issue of autism is growing in awareness. Every political party understands autism is on the radar, parents are becoming more politically savvy and they're going to be an effective political lobby group."

'WE HAVE BEEN SHAFTED'

Maybe, said Andrew Kavchak, the parent of a seven-year-old child with autism, but the disappointment of the day's news was still hard to overcome.

"It's extremely disappointing for the autism community," he said. "We have seen one court after another close its doors on us. We've been in the political arena, then the courts and now back again. Medicare and education are supposed to be the keystones of this country, but they've both failed us miserably. We have been shafted continuously."

Kavchak said the number of kids born with autism increases every year.

"The Centers for Disease Control in the United States now says that one out of every 150 kids are born with autism. Not too many years ago, it was one out of 1,000, then one out of 500. If you don't know one already, you will. It's coming right to your doorstep."

Jean Lewis, a director of Medicare for Autism Now, said the numbers are even more staggering for boys — one out of 94.

She cited the court's decision as an affront to "Canada's most vulnerable" and vowed to fight harder politically.

"Our one goal is to have science-based autism treatment covered by medicare coast to coast. However, the only thing we have going for us in Canada is the Charter of Rights, and it has failed us miserably. Each time they do this, they betray us. The charter is only nice words written on parchment, nothing more."
________________________________
Ottawa Citizen
Supreme Court declines to hear autism suit
Ontario mother calls ruling 'a letdown'
By Janice Tibbetts
December 5, 2008

Parents of children with autism suffered a setback yesterday, when the Supreme Court of Canada declined to referee their lengthy dispute with the Ontario government for refusing to offer intensive therapy in public schools.
A three-judge panel did not give reasons for refusing to hear the case, a decision that effectively upheld an Ontario Court of Appeal ruling that sided with the state.

"Obviously, the court's decision (yesterday) was a letdown for us," said Taline Sagharian, who wants her 12-year-old son, Christopher, to attend a public school in Richmond Hill, Ont., instead of a private institution where he receives 30 hours of treatment weekly, at a cost of almost $60,000 annually. Most of the tab is covered by the province. Ms. Sagharian said the public school system was discriminating against her child based on his disability by refusing to let him attend.

She said the parents would meet with their lawyer in the coming days to determine their next step after the Supreme Court shut down their appeal seeking damages for a Charter violation. She said they may pursue another legal course, such as arguing the government and the schools were being negligent.

In May, the Ontario Court of Appeal ruled against the class action, noting it had already decided in another case that the intensive nature of the program in question did not fit with full-time school attendance.

In that 2006 case, parents of autistic children challenged the government's decision to restrict treatment funding to children under six years old. The government has since abolished its age cutoff. Ontario now pays for the treatment, called intensive behavioural intervention.
________________________________
The Toronto Star
Parents vow to keep up autism fight
Families plan next steps in battle for better services after Supreme Court refuses to hear their appeal
Dec 05, 2008
Tracey Tyler
LEGAL AFFAIRS REPORTER

Parents of autistic children say they'll be planning the next step in their legal battle for better treatment programs now that the Supreme Court of Canada has refused to hear their latest appeal.

The families of six autistic children in Ontario hoped the country's highest court would hear an appeal from a somewhat complicated Ontario Court of Appeal ruling earlier this year involving their proposed $1.2 billion class-action lawsuit against the provincial government.

The Supreme Court yesterday, however, declined to hear the case, customarily giving no reason for its decision.

Taline Sagharian, one of the parents, described the latest development as "a letdown."

"Our case has been ongoing since 2004, and for almost a decade now, families of children with autism have continued to face an impossible choice between prohibitively expensive private autism programs and an unresponsible public school system.

"The need for change remains desperate," Sagharian said in a statement.

The proposed class-action lawsuit against the Ontario government and seven school boards seeks redress for what the families are calling "the failures of autism services in Ontario."

As many as 1,500 families could be affected by the outcome of the case, the plaintiffs say.
The big problem, parents say, is successful therapy programs generally aren't offered in schools, so much of their lives are taken up driving their children to treatment sessions in other communities. It also means their children have to be taken out of school during the day, forcing them to choose between therapy and education.

In 2007, Ontario Superior Court Justice Maurice Cullity struck out portions of the lawsuit that claimed the defendants were negligent, deliberately misused their offices and violated the children's rights to security of the person. He allowed the case to proceed solely on the basis their equality rights had been violated.

Last May, a three-judge panel of the Ontario Court of Appeal also struck out the families' claim their children had been discriminated against on the basis of age.

However, the court allowed the families to amend many of their claims, allowing them to return to court.

The families have long argued for the right to claim damages for breach of their Charter rights, which would allow them to recover some of the cost of providing therapy for their children.

Sagharian estimates she and her husband, Harout, have spent at least $300,000 on a private education and treatment program for their son, Christopher.
____________________________________

[Andrew Kavchak]

The Supreme Court of Canada just did it again…
_____________________

Supreme Court Rejects Application for Leave to Appeal in Autism Class Action Lawsuit

Five families behind case express their disappointment over the decision

Ottawa – December 4, 2008 – Today the Supreme Court of Canada rejected the application for leave to appeal filed by the plaintiffs in the Ontario Autism Class Action Lawsuit. The five families behind the case, which seeks full and timely access to treatment and education for children with autism, expressed their disappointment over the decision, and noted that they would be meeting with their legal counsel in the coming days to determine next steps.

“Obviously, the court’s decision today was a letdown for us,” said Taline Sagharian, one of the parents participating in the class action. (Her 12-year-old son, Christopher, has autism.) “Our case has been ongoing since 2004, and for almost a decade now, families of children with autism have continued to face an impossible choice between prohibitively expensive private autism programs and an unresponsive public school system. The need for change remains desperate.”

The families’ application requested that the Supreme Court consider a number of issues arising from a previous Ontario Superior Court decision, which was subsequently upheld, with some changes, by the Court of Appeal. Among these issues, the families asked to be allowed to seek damages under the Charter of Rights, an important aspect of the class action.

The case was originally filed in 2004 by the five families, representing six children with autism, against the province of Ontario and seven provincial school boards. The families allege that the educational authorities have failed to adequately provide or fund crucial ABA/IBI (short for Applied Behaviour Analysis and Intensive Behavioural Intervention) treatment in the school system or without excessive and detrimental delays. They have been seeking a change to current autism services, as well as compensation for the expenses they have been forced to incur to place their children into private treatment programs.

The plaintiffs will now consider their options regarding the case, including the possibility of returning to the Ontario Superior Court, where the previous appeal decision left open a number of possible legal avenues.

Whatever the parents ultimately decide, they emphasize that the issue is not going away. “Autism is an increasingly common condition, and the members of any growing family could find themselves in this impossible situation we face,” said Sagharian. “Techniques and therapy that work do exist. What is desperately needed is a proper system for getting kids with autism the access to help they need to grow up as high-functioning and independent as possible.”

For more information or for comment please contact:

Taline Sagharian, plaintiff
416-522-8426
t.sagharian@sympatico.ca

[Andrew Kavchak]

while you are at it with the litany of tax horror stories, please also consider putting it all in context for the journalist with the following…

From: azcentral.com/news/articles…

Study shows families' financial strain from autism

Nov. 30, 2008 12:05 PM
Associated Press

CHICAGO – More than half a million U.S. children have autism with costly health care needs that often put an unprecedented financial strain on their families, national data show.

Compared with parents whose youngsters have chronic health care needs but not autism, those with autistic children are three times more likely to have to quit their jobs or reduce work hours to care for their kids. They pay more for their kids' health needs, spend more time providing or arranging for that care, and are more likely to have money difficulties, the study found.

"This is the first national survey that looked at the impact on families of having kids with special health care needs," said lead author Michael Kogan, a researcher with the government's Maternal and Child Health Bureau.
The results are from a nationally representative 2005-06 survey of nearly 40,000 children with special health care needs. These children have a broad range of chronic conditions, including physical and mental illness, requiring more extensive than usual medical care.

A total of 2,088 children with special health needs had autism, which translates to about 535,000 kids aged 3 to 17 nationwide, the study authors said.

The study appears in December's Pediatrics, being released Monday.

Autism typically involves poor verbal communication, repetitive behaviors such as head-banging, and avoidance of physical or eye contact. Affected children often need many more types of treatment than kids with other chronic conditions, including speech and behavior therapy and sometimes medication. Kogan said that may explain the disproportionate strain on their families.

Jacquie Mace, whose 12-year-old son, Austin, has autism, said the study presents a "very realistic" picture of the challenges affected families face.

Mace said she spends "easily $15,000 to $20,000 out of pocket" yearly on supplies for behavior treatment she provides for her son.

She's still working to pay off a $7,000 bill for dental work Austin had last year. He has to be sedated and hospitalized for dental care because he can't sit still in a chair, Mace explained. Austin's health insurance doesn't cover any of it, she said.

Some states require insurers to cover certain autism treatment while similar proposed measures are pending in others, including Illinois.

Mace hasn't had to quit her job helping local families find autism resources, but knows of many parents who've had to leave work to care for their autistic kids.

She is divorced – another common casualty, she said, of the challenges of caring for autistic kids.

[Andrew Kavchak]

And from the Regina newspaper, apparently "Autism services lacking". Hum, you don't say… Gee, I wonder if any of those numbskull MPs from Saskatchewan read "The Leader-Post".
____________________

Autism services lacking

Anne Kyle

The Leader-Post

Thursday, November 27, 2008

A Weyburn mom questions how the provincial action plan for Autism Spectrum Disorder (ASD) will be implemented since there aren't enough speech language pathologists and behaviour therapists to deliver these services.

"What (the Ministry of Health) has done is hired 15 consultants and they are supposed to be the first stop when there is a problem or an issue if anyone feels your child is somewhere on the spectrum. So then this consultant directs you to services that I am assuming are within your (health) region,'' Barb Helfrick said.

"My question is, what services? The first services recommended in an early intervention plan is speech language pathology and some kind of applied behaviour analysis therapy or a modified form of ABA, which in some areas are inaccessible.

"I don't understand how a consultant is going to direct you to services that don't exist.''

Helfrick noted that many health regions are having difficulty recruiting and retaining speech language pathologists, occupational therapists and physiotherapists.

In October the provincial government announced, as part of the $3-million action plan, that 15 new consultants and 18 new support workers will be hired by the regional health authorities to provide enhanced supports and services to children with ASD and their families.

"The role that the ASD consultants would play is to act as one of the first points of contact for families looking for information on services that are available, and receive and process referrals from parents, physicians, or other sources," said Ramona Furkert, with the Ministry of Health's autism advisory committee.

"They can also administer an initial screening to identify clients with suspected autism so that we can start providing services prior to a formal diagnosis being in place and refer children who are not suspected of having ASD to the appropriate services as well.''

The consultants will co-ordinate assessment, treatment and program planning for children 19 and under while the health regions, ASD support workers and other service providers will deliver the services.

The action plan was a response to frustrations voiced by parents who had lengthy waits for the required formal diagnosis which is needed in order to access ASD services, Furkert said.

Helfrick, whose 11-year-old son was diagnosed with ASD eight years ago, wants to know who will deliver the services, particularly in rural Saskatchewan, and when will those services be available.

The plan, she said, is also silent on whether the health regions will work with school divisions to ensure there is a continuum of services for those children already in the school system.

"It is my understanding that the support workers will be working with children not yet diagnosed or those children who are pre-kindergarten,'' Helfrick said, noting these services are already provided by the Early Childhood Intervention Program (ECIP).

The action plan is meant to build on existing services and to enhance what is already out there, Furkert said, adding it is not meant to replace or duplicate existing services or programs.

Furkert said the ministry has been in discussions with the regional health authorities who are encouraged to discuss this plan with the various service providers in their region and look at the services that are currently available and how this plan will fit and enhance existing services.

[Author]

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