[Andrew Kavchak]

Below is a transcript from the CTV W5 program of last Saturday, followed at the bottom by the Editorial in today's Toronto Star. (Get your barf bag ready.)
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Saturday, May 10, 2008
CTV W5 Program
Life on the Brink
Introduction
ANNOUNCER: CTV's "W-FIVE".
……………….
ANNOUNCER: And, the desperate battle for families touched by autism.

UNIDENTIFIED MAN: Okay little guy.

ANNOUNCER: As more and more children show encouraging signs of progress.

UNIDENTIFIED MAN: It's incredible.

ANNOUNCER: Parents are still struggling with costly treatments most governments won't pay for.

SANDIE RINALDO (Reporter): Can you afford this?

UNIDENTIFIED MAN: No.

ANNOUNCER: Sandie Rinaldo.

RINALDO: This has taken its toll on both of you.

ANNOUNCER: With the constant frustrations of feeling ignored.

UNIDENTIFIED WOMAN: Our kids need to be treated for their condition – autism.

ANNOUNCER: And the ongoing fight to change the system that's supposed to help all Canadians.

UNIDENTIFIED WOMAN: The Canada Health Act can be changed with a stroke of a pen.

ANNOUNCER: This is CTV's "W-FIVE". Here is Sandie Rinaldo.

SANDIE RINALDO: Welcome back. A few weeks ago we brought you the story of Carly, a thirteen-year-old girl with autism who after years of therapy was finally able to speak with the aid of a computer. Well, after that broadcast, we heard from families all across Canada, heart-breaking stories of parents struggling to care for their autistic children. We heard about long waiting lists for government-funded therapy, and how many families are forced to pay thousands of dollars a month to get private help. Many are going into debt, some even selling their houses. Tonight, we're going share some of those stories with you and meet the people who are fighting hard to change the system, families who are facing "Life on the Brink". It's a typical day for four-year-old Barry Hudson, but Barry is anything but typical. He's autistic, which means he's easily distracted and very high maintenance. All of which makes Joanne Blair's job as a therapist challenging.

JOANNE BLAIR (Therapist): You did it! That was awesome! It's very challenging, but I can't tell you how much it's rewarding, and every day whether, or not, it's just a little snip of his scissors, or he learned to tie his shoes, each little step is a huge reward in both him and my life, and the way it's impacted both of us. (inaudible) Barry, let's make the picture.

RINALDO: In most of Canada, the therapy Joanne uses is called ABA, applied behaviour analysis.

BLAIR: Awesome! High-five! That's super! Good for you!

RINALDO: It's intense, repetitive and emotionally draining.

BLAIR: What's this? Nose. That's right, buddy.

RINALDO: Joanne's services don't come cheaply. Her fee is about $20,000 a year for 20 hours of therapy a week. It's a cost the Hudson family who live in Mississauga, Ontario, pay without question. They want the best for their son, will do anything to make it happen.

BARRY HUDSON (Barry's Father): Everything we do with Barry is therapeutic in nature. We want to maximize every moment of the day to help him learn.

RINALDO: And because the Hudsons can only afford to pay Joanne part time, the responsibility for continuing the treatment falls to Jessica, Barry's mother.

JESSICA HUDSON (Barry's Mother): Super duper. Look at that! Your amazing. Thank you. Where's your shoulder. That's your shoulder. Elbow.

RINALDO: It's a labour of love. Jessica gave up her $30,000 a year job to do it, never dreaming it would consume most of her waking hours, but she has no choice.

JESSICA HUDSON: I'm so proud of you! It is hard. It is really hard. Seeing Barry improve, you know, give me courage to go on, and just keep doing it.

RINALDO: Keep doing it because, you see, Barry is on a waiting list. It could be two or three years before the Ontario government pays for his treatment. Too long for Jessica and her husband, also named Barry. What's so significant about this key window that you can't wait the 24 to 36 months for him to receive this kind of treatment and for you to be subsidized for it?

BARRY HUDSON: All the research clearly supports that early intervention is critical. If you get a person early in life, even a normal typical child, and you teach them something when they're young, it will tend to stick better. Same thing with children's autism. If you start early, they'll acquire the skills quicker, and more appropriately.

RINALDO: But the Hudsons are paying a high price for their efforts, a very high price. With Jessica's loss of income and the cost of therapy, the family is in the hole for almost $50,000 a year. Can you afford this?

BARRY HUDSON: No.

JESSICA HUDSON: Hardly.

BARRY HUDSON: No, the situation we've had is every single savings that we've acquired over time, RRSP savings, we have spent all that money on his therapy, and my mother cashed in all of her retirement savings as well to help fund Barry's therapy, so basically used every resource we had, and it may look like we'll lose the house next.

RINALDO: Lose the house, and also on the verge of bankruptcy. Factor in the bills, the mortgage payments, life savings and this family is in big trouble.

BARRY HUDSON: I have to get a job in the circus to juggle the bills. So we do our part, and sacrifice, and our reward is at the end we lose everything, and our son gets nothing. That's inappropriate to me.

RINALDO: There is, however, one big payback in this black hole of debt. The therapy is working. Here's Barry on home video in the first few days of therapy nine months ago with his therapist Joanne. He couldn't speak. Couldn't concentrate. Couldn't even follow the simplest instructions. And here he is now, a different and happier child.

BLAIR: Wooh! Ready? Set, go! Yeah, go, good job, Barry. It brings tears to my eyes to know just the past couple months how he's grown. Just in his basic language, we're still gradually working on it, obviously it's been a challenge. But he's come a long way and also just those skills, we worked extremely hard for and he's done extremely well.

BLAIR: I love your smile.

RINALDO: If you had not chosen to intervene at this point in his life, and waited the 24 to 36 months until he qualified for financial assistance through the government, where would he be now? What would he be like now?

BARRY HUDSON: He'd probably be regressed to a level where he'd be completely detached from reality. He definitely would not be communicating with any of us. He wouldn't be toilet trained. He wouldn't be able to feed himself. He wouldn't be able to dress himself. He'd be completely incapable of any activity, normal function for a normal child. It would be a horrible thing.

RINALDO: A horrible thing, and Barry is just one of more than a thousand children in Ontario waiting for government-assisted therapy they may never get.

BLAIR: What are your feet in? Sand.

RINALDO: The numbers are going up every year. That means other families are also facing financial hardship. The provincial minister in charge of children and youth services is Deb Matthews. You know, we took a look at some of the statistics for the waiting lists because of the number of kids requiring this kind of therapy is growing. And in 2003, there were 79 children on a wait list. By 2006, it had grown to 753, and now 2008, there are 1,148 children on a wait list. Isn't that too many children to be waiting for therapy? DEB MATTHEWS (Provincial Minister): Yes. It is too many children, and that's why we're continuing to really work hard to continue to improve the supports for kids with autism. It's a very high priority for me, frankly, because just like all the other parents of kids with autism, we have the very same goals. We want these kids to be the very best they can be.

RINALDO: And do you agree those early years are the important years? We've got to get in there and get that therapy?

MATTHEWS: Well, it's not whether I agree, it's what the experts say. Our program is based on science. We really depend on experts in the field to guide us in our decision-making, and, yes, they do say that the younger, the better.

RINALDO: Ontario isn't the only province with long wait lists. More than 33,000 children across Canada have some form of autism, and many can't get the kind of therapy they need. If you live in Alberta, you're lucky, no wait lists and therapy is fully funded up until the age of eighteen. Other provinces aren't nearly as generous, and even if government funding does come through, there is no guarantee it will last. Take seven-year-old Philip Shalka who lives in Ottawa. He's autistic, and loves play time with his parents. Robert and Elena assumed he'd have his therapy funded by the provincial government until he was eighteen, but last year, a psychologist told them he wasn't progressing. Even used the words "mental retardation" to describe his condition. Were you shocked when someone came and said to you that your son is mentally retarded?

ROBERT SHALKA (Parent of Autistic Child): Yes, because like yourself, I haven't heard that word for a long, long time, and it reminded me of the old days when people with exceptionalities were described as idiots, imbeciles or morons.

RINALDO: After being told their son was severely disabled, they were cut off from funded therapy. Why do you think he was discharged?

ROBERT SHALKA: I have a theory, although I strongly believe that the autism intervention programs would deny this, but for what it's worth, I believe that there was intense pressure, and there continues to be intense pressure, to get the wait lists down.

RINALDO: Philip's family said to us they think the reason the therapy was cut off is to reduce the wait list.

MATTHEWS: Absolutely not. The clinical decisions, and once we have the new guidelines and benchmarks in practice, and parents will be able to actually understand why their child was cut off.

RINALDO: But until those guidelines are in place, it is almost impossible for parents to appeal. So Philip's parents are now paying for his therapy, $40,000 a year, and the boy that a government-appointed psychologist wrote off as mentally disabled is beginning to spell.

ROBERT SHALKA: We didn't give up, and Philip, with our help, was able to show what he can do, and what he knows.

ELENA SHALKA (Parent of Autistic Child): We have found a key to the door that opens his unique way, how he can communicate with outer the world.

UNIDENTIFIED WOMAN: And how about six times four?

RINALDO: Even more amazing, Philip is getting straight "••• for math in a regular grade one classroom. UNIDENTIFIED WOMAN: Okay, you ready, ten times ten. 1-0-0. A hundred. Super job! Excellent.

ROBERT SHALKA: Amazing little guy, because what he knows, it's just, it's incredible, and it was all locked inside.

RINALDO: Fed up with bureaucrats dictating who does and does not get therapy, parents like the Hudsons are now pushing politicians for change.

BARRY HUDSON: We have wait lists that are insane, two to three years. If we were to put a pediatric cancer patient on a two to three-year wait list for cancer treatment, there'd be a revolution, and I'm not proposing that, but these autistic children, this therapy is their medical treatment. Why do we continue to not support those that need it the most?

ANNOUNCER: Next, the grass roots rebellion for parents.

UNIDENTIFIED MAN: The sweetest words I've ever heard him say is "mommy pain."

ANNOUNCER: And the escalating battle for a critical change.

UNIDENTIFIED WOMAN: Amending the Canada Health Act is not a big deal. What's a big deal is the political will to amend it.

ANNOUNCER: When CTV's "W-FIVE" continues.

(COMMERCIAL BREAK)

BARRY HUDSON: There is absolutely no doubt whatsoever the ABA therapy is what's helped our son. It has helped us to help him as well.

RINALDO: Barry Hudson talks to a group parents of autistic children in Oakville, Ontario, about how applied behaviour analysis opened up the world for his son.

BARRY HUDSON: The sweetest words I've ever heard him say is "mommy pain." Not what you'd expect, I'm quite sure, but now that he can tell us he hurts, we can help him. Without the therapy, he would still hurt, and we couldn't help him.

RINALDO: Barry has joined a grass roots rebellion among parents of autistic children, and they're taking on the federal government. Their goal? Change the Canada Health Act, and make autism therapy an essential medical treatment.

JEAN LEWIS (FEAT): There is nothing more reasonable than a Canadian expecting their child's core health need to be covered under medicare.

RINALDO: Sounds simple, but it hasn't been easy for Jean Lewis.

LEWIS: No political party has done the right thing.

RINALDO: She's the voice of families for early autism treatment, a group that started in British Columbia, and is now spreading across Canada. Lewis believes children with autism are treated unfairly. You see, right now, rather than going to a doctor who gives me a treatment protocol like any other disease or disorder, we're sent to social workers who parents are then negotiating with whether or not they can get money to take from their respite pot to pay for treatment. There's no fit there. We don't belong there. Our kids have a medical condition. They need to be treated for their condition – autism.

RINALDO: Lewis knows firsthand a parent's frustration. Her fourteen-year-old son, Aaron is autistic, in therapy for twelve of those years. Some paid for by the BC government, the rest, $35,000 a year, by Lewis herself.

LEWIS: What we have is a patchwork of services from coast to coast that are provided through the various ministries of social services, or children and family development. They're called different things. Nothing to do with treatment. Everything to do with support, and respite, and babysitting, there all things that families need when they have autistic children, but that does not endorse or doesn't enshrine what our children need to help them access the same thing that every other Canadian kid needs access to.

RINALDO: Five years ago, Lewis joined a group of families to fight a legal battle all the way to the Supreme Court of Canada to force provincial governments to pick up the tab for their children's treatment. But in 2004, the court ruled that it wasn't up to them to tell governments how to spend health care dollars.

LEWIS: And basically said to us this is an issue for parliament. This is not up to the courts. This is an issue for parliament. In fact, they went as far as to say what you're doing is probably the best thing that can be done but it's really not up to us. They did a Pontius Pilate. That was the genesis of our political initiative. We took them at their word.

RINALDO: The group has found an ally in a Liberal senator Jim Munson. He was part of a Senate committee that published a report on autism in 2007 called, "Pay Now or Pay Later." The message in the title was stark and clear.

JIM MUNSON (Liberal Senator): If we don't spend the money and the time with a federally funded program for autistic children, and autistic adults, we're going pay a hell of a lot more later as a society. Institutionalizing children who become adults when parents are gone, you know, that's the biggest fear for these parents. What will happen to my child when I'm gone? Where will he or she be? Well, right now, that person will be in a lonely closeted place if we don't do something now.

RINALDO: You'd think that every parent with an autistic child would be cheering to change the Canada Health Act, but Mike Lake, a federal Conservative MP and at father of Jayden, an autistic child, believes there are other ways to do this.

MIKE LAKE (Conservative MP): I'm going to start by allowing my son Jayden just to say hi. He likes to say hi when he sees a mic there.

RINALDO: His son joined him recently at a press conference on Parliament Hill for World Autism Awareness Day.

LAKE: This is my son Jayden, and as mentioned, he has autism. He's twelve years old right now, and I think it's important for us as parents and for our kids to be out, to meet with people, especially people that are making political decisions.

RINALDO: Jayden Lake is lucky. He lives in Edmonton, so all his therapy is paid for by the Alberta government. Lake agreed that every child should get the same level of treatment as Jayden, but not by changing the Canada Health Act.

LAKE: The federal government the isn't over and above the provincial governments. We don't have the right to just demand that the provincial governments do this thing or that thing. We're partners in Confederation, and if we were to start to dictate individual treatments and therapies that should be named in the Canada Health Act, there would be enormous kickback from the provinces. The provinces need to be held accountable for the things that are within their jurisdiction, and they have the power to do that.

RINALDO: That means no support for Jean Lewis from the governing Conservatives.

LEWIS: Autism is a socially constructed handicap.

RINALDO: And although individual MPs and senators have come on side, no political party has made changing the Canada Health Act a part of their platform.

LEWIS: This is a game of smoke and mirrors. This is something that the health technocrats have cooked up for the politicians who don't understand it. Look, the Canada Health Act is not divinely inspired scripture. It's federal legislation that can be changed with the stroke of a pen. This is how you change it. You add to the list of services ABA interventionists to your list of service. It's done. It's done. Amending the Canada Health Act is not a big deal. What's the big deal is the political will to amend it. That's the big deal. What does that tell you about their worthiness?

RINALDO: But there's a federal election coming up, and Jean Lewis and her group have a plan.

DAVE MARLEY (Lawyer): We can't get at the bureaucrats until we first tackle the politicians.

RINALDO: They've been joined by Dave Marley, a former trial lawyer, and veteran of political campaigns in BC who's working with Lewis for free.

MARLEY: So, we have Parry Sound, Muskoka, this is Mr. Clement's…

RINALDO: They're targeting individual politicians. Fourteen federal ridings across the country, won by just a few votes in the last election.

MARLEY: Now, I don't know who the MP is in some of those, I don't care, nor do I care what party he or she belongs to. What I care about is they're vulnerable, and they know that a small, dedicated group like us can do them some serious political damage.

BARRY HUDSON: Do you want some more salad, Barry?

RINALDO: While federal and provincial governments bicker over who should pay for the treatment autistic children desperately need, nothing changes for parents like the Hudsons.

BARRY HUDSON: Good boy. Good boy, Kenneth. You're eating your salad too?

RINALDO: They're running out of money, and fast, but this family has no intention of giving up.

BARRY HUDSON: It's a lifestyle, and at the end of the day, Barry's been engaged, had therapy for his twelve hours of being awake, but we're pretty much, pretty much exhausted. We have to do what we do for our son because we have nowhere else to turn. It's a job, it's a mission to help our son, and that's how we look at it.

RINALDO: We'll be right back.

(COMMERCIAL BREAK)
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Toronto Star
Thusday, May 16, 2008
Editorial

No easy answers in autism debate

Bruce McIntosh captures the weariness of many parents of autistic children when he says he is "tired of this fight." McIntosh, whose 8-year-old son is autistic, joined other parents at Queen's Park this week to demand the government cut long waiting lists for intensive behavioural intervention (IBI), and provide the costly therapy in schools.

Their frustration is understandable. It is generally thought that the earlier IBI starts, the better. Yet many autistic children languish on waiting lists for years before getting public funding. So many families pay for therapy themselves, at a cost of tens of thousands of dollars.

But the issues aren't quite as black and white as they appear.

True, the number of children waiting for IBI (1,148) has skyrocketed since the Liberals came to office in 2003 and rivals the number of children actually receiving funding for the therapy (1,404).

But those figures mask the fact that the McGuinty government has more than tripled autism spending, and the number of children getting IBI funding has nearly tripled. The paradox is explained, in part, by the government's 2005 decision to stop cutting off therapy once a child turns 6. This move dramatically increased the pool of eligible children. Speedier assessments also stretched the wait list.

Those explanations provide no comfort to parents of children waiting for funding. But they do show the McGuinty government has not ignored the problem. Far from it.

What happens when autistic children are old enough to go to school is just as thorny. Parents say they are forced to make an "impossible choice" between therapy and public education because IBI is not offered in schools. Some have asked the courts to intervene on the issue.

Education Minister Kathleen Wynne last year directed all school boards to provide a specialized instructional method tailored to autistic students. The Liberal election platform also included a $10 million pledge to prepare schools to deliver IBI therapy "on-site."

But it is far from clear if that means IBI therapists will work with autistic children in regular classrooms, as some parents want, or in separate rooms within the school. Whichever path the province takes, a philosophical clash looms between those who argue IBI should be integrated into classrooms (mainly parents), and those who worry its one-on-one focus makes it unsuitable, and even disruptive, in a classroom setting (including many teachers and school administrators).

There are no easy answers to these issues. But the best chance for a solution lies in constructive talks between parents, school boards and government officials.
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To many people the newspaper called the Toronto Star is often considered the mouthpiece of the Liberal Party. The editorial above, in direct response to the successful agitation by Stefan Marinoiu through his hunger strike, appears to carry all the standard messages and party line on autism, namely:

– not an easy task
– very complicated
– we have done a lot so far but more needs to be done
– the Government of Ontario "hears our pain"
– we are working very hard
– we are doing our best
– no simple answers
– we are "victims" of our own success
– success depends on "dialog" among govt, service providers, schools and parents.

[Andrew Kavchak]

Toronto Sun,
Wed. May 14, 2008.

Hunger striker won't waver

Antonella Artuso, Queen's Park Bureau Chief

A father who started a liquids-only hunger strike 10 days ago says he won't give up his protest until his own 15-year-old son, and all autistic children, get the treatment they need to live a fuller life.

Stephan Marinoiu said his mortgage payment comes due today and he's $400 short, but he'll move his whole family onto the front lawn of Queen's Park if necessary to secure intensive behavioural intervention (IBI) for his son Simon.

"Children are our riches, they're our gold," said Marinoiu, a father of three.

NDP MPP Andrea Horwath said record numbers of children are on the waiting list for provincially funded autism services, despite public assurances by Dalton McGuinty's government that more is being done.

"Stephan really is the face of parental anguish and sheer frustration here in Ontario," Horwath said.

Bruce McIntosh of the Ontario Autism Coalition said parents are often under enormous financial pressure to provide IBI out of pocket — $20,000 a year for a 20-hour-a-week program and up to $70,000 a year for a full-time program — and many can't afford it.

Children and Youth Services Minister Deb Matthews said she has twice met with Marinoiu in the last few days and her ministry staff are working hard to provide his family with appropriate support.

[Andrew Kavchak]

Hi Folks,

I don't know about you, but I really enjoyed watching the CTV W5 program this past Saturday. Wow! Are we getting some coverage or what?!?! Congrats to Jean Lewis, Robert Shalka, and others for a job well done!

However, such complicated matters are so difficult to explain in a few moments and reports are often missing something. When facts don't fit the standard journalist formula, then things get omitted, etc.

Here are some thoughts…

1) Regrettably, the "Amend the Canada Health Act v. Don't Amend the Canada Health Act" is not my favourite characterization of the options at the disposal of the federal government. As Mike Lake did, they simply say they can't force something on the provinces and leave it at that.

If there was any leadership in Ottawa in the Health portfolio, a conference would called by the federal minister of health with his provincial counterparts to negotiate a deal as part of a National Autism Strategy. The feds should put some money on the table from their 11 years of consecutive budget surplusses, and negotiate the inclusion of autism treatment in Medicare with the legislative action of amending the CHA as the sealer of the deal. Whevever the negotiations hit a stumbling block they could threaten to unilaterally amend the CHA and withhold transfer payments to any province that does not comply. This is typical of Constitutional conferences and through the process we typically get some degree of "buy in" or support from the provinces…which would be beneficial if it would ever happen. This funding formula approach is not unprecedented in health accord negotiations and is what the Senate Committee recommended.

For Mike Lake (an MP with an autistic son!) to brush the entire matter off as one exclusively of provincial jurisdiction for which they should exclusively be held accountable is a cop-out and abdication of leadership. When the provinces are acting in an irresponsible and negligent manner, the feds have to wake up and display some initiative. The refusal to do so for autism, while going ahead with a $50 million National Cancer Strategy, is inconsistent, and you can pick your explanation of why they prefer to be hypocrites.

It is regrettable that the CTV journalist did not pursue a line of questioning with Mike Lake regarding why the feds have not considered pursuing a Canadian process to solve a national problem and "make a deal!" like they do with everything else. It would have been harder for him to squirm his way out of that one and would certainly expose the government for what it is.

2) Speaking of Mike Lake, I could not believe the clip of his using his son at the press conference on World Autism Day to actually state that he thought it was a good thing that families with autistic children get out there and be known to the public and the "political decision-makers". Huh? And what is he? And how has he helped? Besides providing a disgraceful letter to his caucus colleagues to justify the vote against Shawn Murphy's private bill last year I mean. This is now the second time I have seen him use his son at a press conference of this nature. I personally find it revolting for him to use his son in these photo-ops while doing nothing (to my knowledge) to actually help the autism community. No shame at all.

3) I was surprised that there was no mention of the mammoth efforts by the US federal government in the Combating Autism Act and billion dollar budgets, etc.

4) The clip with the Ontario Minister was a classic in demonstrating political non-responsiveness. The wait list grows from 79 to 700 to 1,200 over the span of a few years. What does the Minister say? That the government will continue to work hard. In other words, more of the same. That's what I was afraid of! Anyone willing to guess as to when the waiting list will reach 1,500 or 2,000?

[Andrew Kavchak]

Hi Folks,

As I glanced over the text of the CIHR report on their autism symposium, nothing really grabbed my attention in terms of real practical statements of what was missing and need in terms of access to treatment in Canada. I did not see any concrete suggestions for improvement in public policy. Maybe I missed something, but it does not appear that this document will feed into the public policy process in Ottawa and won't contribute to the development of a National Autism Strategy. This should come as no surprise either, since the CIHR person that organized the conference told me last year that no policy issues will be discussed. Instead, she indicated that the government's reply to the Senate Committee report would discuss policy. That document which Clement had tabled in the Senate last September completely ignored the recommendation of the Senate Committee for a National Autism Strategy and did not even mention the words.

So where are we federally? Well, we achieved some degree of success with the tabling and passing of the National Autism Strategy motion in the House of Commons, and the tabling of the Senate Committee report with recommendations. However, these are just words, and the government has not moved on these things or put any resources in the budgets towards the items in the motion.

You may recall that on November 22, 2006 FEAT of BC held a rally on Parliament Hill. Before that date the federal Health Minister Clement repeatedly stated that autism is a provincial matter. However, the day before the rally he held a press conference and began by stating that "the situation is now so serious that doing nothing is not an option" and he proceeded to outline five new initiatives. What were they and what has happened? In his speech at the symposium last November he gave an update.

First, funding for a new national Chair in Autism Research and Intervention. Last October 20, 2007 the government announced with BC the investment of $1 million to create such a chair at Simon Fraser University.

Second, consulting stakeholders toward developing an ASD surveillance program. Well, we know that they are now conducting an online survey, and if you scroll down this message board you will see a post exposing its flaws. Further, a more recent post indicated that while Ottawa is going through their "consultation process", in the UK the figures are being collected of the adult population for purposes of developing a strategy to be released next year.

Third, a new web page on the Health Canada website. Wow. The page apparently contains information about what the feds are doing…such as the dissemination of information by means of a webpage.

Fourth, designating the Health Policy branch as the coordinator for ASD action within the federal Health Portfolio. This is potential promising. So what happened? According to Clement: "federal action to address autism has been better coordinated than ever before". And…???? As far as I can tell, nothing.

Fifth, holding a stakeholder symposium. The symposium was initially set for the Spring of 2007 in Ottawa and then postponed to November 2007 in Toronto. The symposium was "by invitation only". The list of participants is impressive. Michelle Dawson and Laurent Mottron. Mike Lake even! (He's the MP with a child with autism who not only voted against Shawn Murphy's Bill that would have included autism treatment in Medicare, but he actually issued a pathetic letter explaining why he did so, which several MPs posted on their website and sent to parents like us to justify their voting against the Bill. FEAT of BC is the only organization to my knowledge that posted an annotated version of the disgraceful letter exposing it's false and misleading arguments.)

As I indicated up top, the symposium report came out now a full six months after the symposium and it does not appear to contain any useful content with respect to improving our country's policies and programs.

While Clement stated that "research is the backbone for all truly effective policies and therapies" and that "the more we share knowledge, the more we gain, and the faster we can translate discoveries into new, effective, evidence-based therapies that can provide true hope for Cnaadians living with ASD and their families", he completely ignored the fact that research has shown for over 20 years that there is an effective, evidence-based treatment available and that Canadians with autism are not getting access to it in Medicare. Instead, he had the audacity to say that families are often desparate and that "we have to guard against the urge of families to let this force them off evidence-based path being paved by so many of the researchers here today. As we all know, buying into false hope can have drastic consequences." Huh? Excuse me? We have been asking for access to the evidence-based treatment and despite all the evidence over the past two decades, it is people like Clement (a former provincial Health Minister) who have refused to supply the treatment under Medicare. Despite this incredible irony and distortion of reality, he went on to say: "as Health Minister, I am keenly aware of the crucial need to support the science behind actions that will ultimately benefit the many…". Excuse me Sir, but once the science has been identified, then what? Huh?

So what's the bottom line?

Clement has got to go!

[Andrew Kavchak]

Hi Folks,

It looks like the report of the CIHR "by invitation only" autism symposium that was held in Toronto on November 8-9, 2007, is now available at:

http://www.cihr-irsc.gc.ca/e/36237.html

[Andrew Kavchak]

Why do things always seem easier abroad? Why is Canada so often way behind?

Recently the autism community in Canada was informed that, pursuant to federal Health Minister Clement's 2006 announcement that the federal health bureaucrats will explore ways to monitor the extent of the autism crisis in Canada and the prevalence rates, the Public Health Agency of Canada is only now apparently consulting with Canadians about what can be done to track autism in Canada through an online questionnaire. This exercise was recently subjected to some exposure for its flaws and criticism, as reflected on the FEAT BC website.

While the federal government Health Department or Agency officials go through their flawed process (let's be clear on something: in Ottawa "the process is the message", as Marshall McLuhan would likely say), the UK government made an announcement that was just reported in the media (see below). Apparently, adults with autism will be counted and the information will be used for purposes of developing a government strategy that will be published next year. Holy smoke! There seems to be some sort of action…they are actually taking numbers and feeding the data into the development of policy that will be a national strategy. And why can't we have similar action in Canada?

(Incidentally, is "Care Services" Minister Ivan Lewis related to Jean or Mike Lewis? Congratulations to the Lewises! A clan on the move that gets things done!)
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From:
http://ukpress.google.com/article/ALeqM5iQFAFc1wEYqLEIay_TGZFwvDC6xw

Adults with autism to be counted
12 hours ago

The number of adults who suffer from autism in England will be counted for the first time.

Care Services Minister Ivan Lewis unveiled the £500,000 project, which aims to include adults who have not yet been diagnosed.

The information will be used to devise the first Government strategy on adults with autism and Asperger's syndrome, due to be published next year.

Mr Lewis said: "Adults with autism and Asperger's syndrome are too often abandoned by services with their families left to struggle alone.

"Equally, people are frequently misappropriately referred to either mental health or learning disability services.

"We still don't know enough about autism, but we do know that, left unsupported, it can have a devastating impact on those who have the condition and their families. "One of the key gaps in our knowledge is simple; we don't know how many people have the condition in any given area. That is why I am ordering a study to address this."

As many as one in 100 children are believed to have autism, and the new study will partly focus on their transition into adult life.

The research is being led by a team from the University of Leicester.

A recent survey by the National Autistic Society revealed 63% of adults with autism feel they do not get enough support. The charity has welcomed the new study.

Chief executive Mark Lever said: "We warmly welcome today's announcement from the Department of Health.Through our I Exist report, adults with autism told us they feel isolated and ignored. We are therefore delighted that the government has listened and is taking action."

[Andrew Kavchak]

Hi Folks,

This is a really awful story. Not only is our community continuously facing obstacles from the healthcare system, politicians, school boards, bureaucrats, etc….but as a means of last resort, and only as a last resort, families have been forced to resort to legal action.

You'd think that by hiring a lawyer you would be advancing your case, and not ruining it. Well, I remember years ago a friend of mine with an autistic child told me that she was part of a group of parents who were starting a major lawsuit that was seeking millions in damages in relation to the lack of services for autistic kids or something like that. Their lawyer? Someone called Jonathan Strug.

Well, I remember asking her if the Statement of Claim was filed. Yes it was, she said. Was the Statement of Defence filed? I was curious to know what the government's counter-arguments were. Not sure, she said. Jonathan was taking care of it though, she added.

Well, well…The story below is just unbelievable. You have to read it to believe it. Now some people are diverting their precious time, energy and resources to fighting a lawsuit against the former lawyer and his former firm, rather than the government/school boards, etc… And how does that help the kids who have needed treatment urgently for years? The government must be laughing. I have not communicated with my friend in a long, long time. But the last time I heard she was on sick leave from her employment. This is a weird planet. It really is.
__________________________________
Toronto Sun,
Wed, May 7, 2008.

Young lawyer's meltdown

Jonathan Strug disbarred over series of phantom legal cases with families of schoolchildren

By MOIRA MACDONALD

Jonathan Wade Strug was a promising young lawyer with one high profile case and one landmark lawsuit under his belt within three years of being called to the bar in 2002.

Yesterday his career came to a crashing, mystifying finish as the Law Society of Upper Canada disbarred the 35 year old for a series of phantom legal cases he duped families of schoolchildren into believing he was pursuing for them.

Readers might best remember Strug for his work as one of the lawyers who successfully represented Marc Hall, the gay Durham Catholic school board student who wanted to bring a male date to his prom in the spring of 2002.

But Strug really proved his mettle when, first as an articling student, and then as a junior lawyer, he worked on the landmark Wynberg case with the well-reputed law firm Eberts, Symes, Street and Corbett (now Eberts, Symes, Street, Pinto and Jull).

The case involved families of autistic children who say the Ontario government had violated their children's rights by denying them a special — and costly — therapy called Intensive Behavioural Intervention (IBI) once their children turned six. The families won in March 2005. But the McGuinty Liberal government successfully appealed the ruling in July 2006, saving itself millions of dollars in IBI costs.

Strug gained respect from special needs parents for his work, knowledge and sensitivity. As a result, other parents approached Strug for help with their own school board battles.

But between Wynberg Part I and II, the young lawyer melted down — unbeknownst to his firm, it says — perpetrating a massive deception on the non-Wynberg families. He left the Eberts firm in October 2005, in the midst of helping to prepare the fight against Wynberg Part II.

Through his lawyer William Trudell, Strug, now a warehouse worker, admitted his guilt and remorse yesterday in eight separate phantom cases. He was not in the Law Society hearing room, counselled by Trudell to stay away because of his fragile mental state.

But in the words of the Law Society's panel chair, Brad Wright, Strug "repeatedly, deliberately misled, even lied to many clients, other lawyers, and the senior partner in his own firm."

What is mystifying however, is why Strug put so much time and energy into lying. It wasn't like he was doing nothing. He continued to work overtime, preparing well-done statements of claim, showing children's families fake court orders in their favour, giving them false court dates, telling them he'd won them money awards, even encouraging them to publicize their cases with the media — yet no paper had been filed. The cases did not exist.

Strug told Neil and Natasha Cuddy, parents of a boy whom they believed had been inappropriately labelled as learning disabled, he had filed a judicial review application for them against Ontario's privacy commissioner regarding access to documents. But when I called the courts in late September 2005 to verify the filing, I was told it did not exist. It was that call that led to the revelation Strug had lied to the Cuddys about what he was doing — and the first complaint Strug was not all he seemed.

The Cuddys — not part of yesterday's Law Society action — are now suing Strug, along with his former firm. Other families say they are also suing Strug and the Eberts firm.

The question is, why did he do it? The best Strug's lawyer can come up with is his client was overwhelmed, sleep-deprived, exhausted, severely depressed and lost his judgment.

But for the devastated families, there are still many questions.

These people not only saw their trust trampled by school boards, and then the lawyer who was supposed to help them, but also watched their children permanently lose out on educational opportunities because a lying lawyer cost them valuable battle time.

"I could imagine doing it to one person. [But] autism is so politically charged," says Carolyn Borgstadt cryptically. Borgstadt is the mother of an autistic boy and was nearly sued for slander after Strug recommended she go to the media about her school board's non-compliance with court orders, when in fact Strug had never got the orders in the first place.

"It was crushing, absolutely crushing."

[Andrew Kavchak]

Thanks to Nancy Morrison's news list…two items of note…
______________________

Updates on Stefan's Hunger Strike:

Stefan agreed to drinking some Gatorade last night that a parent brought to him. Another father took him a sleeping bag, a blanket and a couple of lawn chairs. He's sleeping in the park to the north of Wellesley Street. It's not "Legislative Grounds," although it's still technically "Queen's Park."

Visitors yesterday included Andrea Horwath, Peter Shurman, some Liberal staffers and Deb Matthews, who invited him into Queens Park to meet with her today, to work out a solution for this. Stefan did an interview with 88.1 CIUT, the U of T radio station and another with a woman from Canadian Press..

Some other parents have shown up to talk to him and help him too.

Stefan had a meeting at Matthews' office this morning, but he's now back at the Leg. He told them during the meeting that he wants four things: (1) The waitlist must be eliminated by November 1, (2) There must be ABA in schools, (3) They need to work with Ottawa to develop a national autism strategy and get more funding for Ontario and (4) Therapists need to be regulated. CHCH-TV Hamilton and the Hamilton Spectator are expected out later today.

Lisa McLeod has been out to visit, and Peter Shurman has been out again. Lisa has said she'll ask a question today, and Peter said he's going to ask one tomorrow. Informatin is that the Premier was asked about Stephan in a media scrum, but no word about by whom or what the response was.

——————–

And don't forget to tune into W5 before the hockey game on Saturday night. 7pm on CTV:

Saturday, May 10

Road to Ruin – Canadians lose millions after investing in a company that offered to make big real estate profits.

Life on the Brink – Families go deep into debt to pay for treatment for their autistic children.

[Andrew Kavchak]

Hi Folks,

Remember a couple of months ago that a parent of an autistic teenager in Toronto, by the name of Stefan Marinoui, walked through blizzards from Toronto to Parliament Hill in Ottawa to draw attention to the need for a national autism strategy? Well, he just started a hunger strike on the lawn of the Ontario provincial legislature (Queen's Park) in Toronto.

[Andrew Kavchak]

Get ready folks, it's mental health week!
________________________________________
House of Commons
Hansard
Monday, May 5, 2008.

Statements by Members

Mental Health

Mr. Patrick Brown (Barrie, CPC):

Mr. Speaker, mental health week is upon us. I am pleased to take this opportunity to update the House on Canada's new mental health commission.

It was just last year that this Conservative government, led by this Prime Minister, established the mental health commission to bring forward real action and solutions to the issues facing Canadians. In budget 2007, we committed $55 million to the commission itself and then this past February, we announced an additional $110 million for five regional projects.

These projects will undertake activities in three areas: facilitating the development of the national mental health strategy, fostering knowledge exchange, and undertaking public education and public awareness activities to combat the stigma associated with mental illness. The new mental health commission will develop these projects and implement them in five cities across Canada: Vancouver, Winnipeg, Toronto, Montreal and Moncton.

Mental health is a significant public health issue. I applaud the government, mental health agencies and groups across Canada for their passionate and committed work. Canadians have asked their government to get involved, and that is exactly what this government has done.

[Author]

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