[Andrew Kavchak]

Hi Folks,

Well, if there ever was any doubt about federal Health Minister Tony Clement's commitment to those with mental health problems, let all doubt be cast aside, as the article below indicates. I just wonder whether any of this bureaucracy-building with supposedly short-term mandates will help Canadians with autism in any way at all.

___________
From CTV.ca

Feds to fund extension for mental health commission

Updated Tue. Aug. 19 2008 7:52 AM ET

The Canadian Press

MONTREAL — The federal government has extended the mandate of the Canadian Mental Health Commission for another five years, Health Minister Tony Clement announced Monday.

Clement said the commission is focused on projects including a mental health strategy, an anti-discrimination campaign and a knowledge-exchange centre.

Commission president Michael Kirby said he hopes to help Canadians change their attitudes toward people with a mental illness.

He said the government will spend $74 million over the next five years.

"The mental health system in Canada has been so colossally underfunded," Kirby said.

"It's going to take a long time, 10 to 20 years I would suspect, before the mental health system gets to be as good as the acute-care, physical health system is."

[Andrew Kavchak]

Hi Folks,

Well, the language and corresponding ideas appear to be catching on. A few years ago while protesting on Parliament Hill I bumped into Peter Kormos, one of the well-known maverick NDP MPPs in Ontario. I don't know what he was doing around Parliament Hill that day, but I spotted him and spoke to him right away about the need for autism treatment to be covered by Medicare, etc. He sounded sympathetic and of course referred to Shelley Martel, the then NDP critic with the autism file.

However, now it appears that one of his constituents has a problem….and what is his quote/soundbite? "Treatment should be available under OHIP"! Beautiful! For your info, OHIP is the Ontario Hospital Insurance Plan or public health insurance program, or MEDICARE in Ontario. Finally, a provincial politician just said it. I hope he tells his colleagues in the legislature that saying those words did not hurt, (and that there is no reason to be fearful)and that they should all start repeating it over and over and then take the next step and act on it.
_____________________________________

Autistic children face therapy delay

Funding has more than tripled under Liberals, but expert says it has not kept up with demand

Aug 08, 2008
The Toronto Star
Rob Ferguson
Queen's Park Bureau

As the mother of an autistic son, Stacy Hayward of Welland was looking forward to 4-year-old Branden starting intensive treatment in September.

Then Hayward got a letter late last month from a local treatment centre saying the boy's intensive behavioural intervention (IBI) therapy will be delayed because of a cash crunch.

She came to Queen's Park yesterday looking for an explanation.

"The government is failing our children," said the mother of three, noting the IBI treatments that cost about $50,000 a year "are known to really, really help these children."

The postponements – happening in several parts of Ontario this summer – prove the need for covering IBI therapy under provincial health insurance, the New Democrats say.

"Treatment should be available under OHIP… so treatment won't be a lottery for kids who need it," New Democrat MPP Peter Kormos (Welland) told a news conference yesterday as an energetic Branden roamed the media studio.

"It's a roll of the dice."

The Ministry of Children and Youth Services acknowledged some social agencies giving IBI treatment through provincial funding – including Hamilton-Niagara and Northern Ontario – are facing deficits, but officials at Queen's Park aren't sure why.

"We don't have a full picture yet," said Kevin Spafford, a spokesperson for Children and Youth Services Minister Deb Matthews, who has ordered a report on the issue.

"We're just looking to understand why even though we've increased funding they're still having cost issues," Spafford said.

He noted the Liberals have increased autism funding to $150 million this year from $44 million when they were elected in 2003.

About 1,400 children now get IBI therapy annually, up from 500 five years ago. Another 1,100 remain on the waiting list.

At least one agency says the problem stems from provincial funding not keeping pace with the increasing number of children getting the expensive IBI treatments.

In the Hamilton-Niagara area that serves the Hayward family in Welland, the number of children getting IBI therapy has almost doubled in two years, to 116 this year from 62.

"The revenue for IBI also increased, but not proportionately," said Melissa Macdonald, spokesperson for the Hamilton Health Sciences Centre, noting the funding has risen at a much slower rate of about 28 per cent in the same period to $8.89 million this year.

That's why the Hamilton centre – which runs the Hamilton-Niagara regional autism intervention program now facing a $1.8 million deficit – has decided "different models of care" will be needed to treat its allotted 116 children this year.

"That means kids in this catchment area will wait longer," Macdonald said in an email interview.

For Hayward, that means digging deeper into her own pockets to pay for IBI treatment on a private basis.

"If we have to mortgage our house … that's the position we're in," she said. "We're gonna do whatever we have to do."

IBI treatment has been widely hailed for making communications breakthroughs with autistic children. Therapists reinforce desired behaviours and discourage inappropriate ones in sessions that can take up to 20 hours a week or more.

[Andrew Kavchak]

Check this out…especially that few paragraphs about amending the Canada Health Act to get Medicare for Autism NOW!
______________________________
Wednesday, July 30, 2008
CANADA AM

Manitoba's autism treatment attract doctor parents

RINALDO: A Halifax family is packing up and moving to Winnipeg in order, they say, to get the treatment they need for their autistic child. Three-year-old Eric was diagnosed with autism a year ago, but Eric's parents say they haven't been able to get access to the kind of support and treatment that their home province would offer. So, the family is redirecting their careers, leaving home for Winnipeg.

Joining me now from Winnipeg is Eric's mother, Leanne Van Amstel; and from Halifax, Eric's father, Leif.

Good morning to you both.

DR. LEANNE VAN AMSTEL: Good morning.

DR. LEIF SIGURDSON: Good morning.

RINALDO: Now, Eric didn't make the lottery. That's what happens in Nova Scotia, you throw your name into a hat. He didn't make the lottery.

So, this treatment is very expensive, I know. How are you handling all of that? Or how were you before the move to Winnipeg?

DR. LEANNE VAN AMSTEL: Well, basically, we knew that Eric needed intervention and he wasn't going to get it through the funded program in Nova Scotia. And our main goal was to get him the intervention that he needs.

So, we decided to pursue that privately even before his diagnosis, because we knew what we were dealing with.

So, we had a psychologist on board, a speech language pathologist, a couple of behavioural therapists. And we were essentially running that completely on our own, to try to get him the level of intervention that he needed.

RINALDO: And early intervention is key, is it not, Leif?

DR. LEIF SIGURDSON: Yeah, it really is. There's a lot of good evidence out there that really shows that if you get at these kids quite early on in their development that you can make a significant difference in their eventual outcome.

RINALDO: Why choose Manitoba? Alberta, I'm told, has a wonderful program as well.

DR. LEIF SIGURDSON: Well, you know, I'm in the fortunate position really that there's job openings all across Canada with regards to reconstructive surgery.

So, we looked at all the provinces. And Alberta does have a good program, but it's privately delivered. The government will give you a certain amount of funding to go out and find providers — which is sort of the situation we were in here as well, in terms of trying to put together a program ourselves.

And the Manitoba program is publicly funded and it was very well organized and had all the pieces together that we were looking for.

RINALDO: Right. I think that the message here is that this does not fall under federal jurisdiction. Each province determines the treatment course and basically how many hours and how much funding they're going to provide.

You touched on this before, and I want to talk to Leif about this. You actually put an ad in the newspaper because I know the two of you are giving up pretty lucrative jobs although, as you did say, you have one to go to.

Show me this newspaper ad that you've put out.

DR. LEIF SIGURDSON: I don't know if you can see it that well. But that was in the paper on Saturday.

RINALDO: And what does it say exactly?

DR. LEANNE VAN AMSTEL: Well, I just was announcing the closure of my practice. And I put in that I'm leaving Nova Scotia "due to inadequate resources and services for children with autism spectrum disorder in this province. I sincerely regret the inconvenience this will pose to the 1,117 patients on my waiting list."

So, it's actually a requirement of the College that I announce the closure of my practice.

RINALDO: Right.

DR. LEIF SIGURDSON: But I've been in practice here for eight years. And I've treated a lot of patients. And I wanted my patients to know that I was not leaving for a better lifestyle or more money.

And I also wanted to draw attention to the fact that there's a significant number of children here in Nova Scotia that get little or no treatment for autism spectrum disorder as a result of the lottery and underfunding of the program.

RINALDO: Leanne, let me put this question to you. There's been some discussion about putting autism under the Canada Health Act which would make it, I suppose, universal across the country and require the provinces to give equal access.

What do you think of that idea? The federal government is not that keen on it because they think it should be up the provinces to administer it. The funding.

DR. LEANNE VAN AMSTEL: I think it would definitely be a move in the right direction. If you look at the numbers, one in 150 children born today will be diagnosed with autism. And the rate in boys is on the order of one in 94. So, it's a significant problem. It's everywhere really, if you look around.

And in the health-care system that we have in Canada, the principles are that it's supposed to be universal and is supposed to be accessible for everybody who needs it. And, clearly, in the case of autism that isn't the case. And there is a significant variation from province to province.

So, I think making a federal issue, putting it under the Canada Health Act, would be a move in the right direction. I think that's the way it should go.

RINALDO: Okay. Thank you both for joining us this morning and sharing your story with us. And good luck in Winnipeg.

DR. LEANNE VAN AMSTEL: Thank you.

DR. LEIF SIGURDSON: Thank you.

Dr. Leanne Van Amstel, Mother of Autistic Child Dr. Leif Sigurdson, Father of Autistic Child

[Andrew Kavchak]

This is an interesting press release about the autism "Medical Migration" phenomenon in Canada. Perhaps the term "Medical Refugee" is also appropriate. Of course, this is not the first case of people moving from province to province to get treatment for their children with autism. Several years ago we organized a press conference at the Ontario Legislature with MPP Shelley Martel and one parent from Bowmanville who was about to leave for Alberta, and another parent who was on the line from Calgary who had earlier moved from Hamilton. The autism organizations in Alberta did not issue any press releases welcoming them, but in this case the high profile nature of the migrants now appears newsworthy! Is the St. Amant program that great? If so, should it serve as a model for other provinces? Comments?
_______________
MEDIA RELEASE

MANITOBA FAMILIES FOR EFFECTIVE AUTISM TREATMENT (MFEAT) WELCOMES NOVA SCOTIA FAMILY FORCED TO RELOCATE TO MANITOBA TO ACCESS PRE-SCHOOL AUTISM TREATMENT PROGRAM

28 July 2008
FOR IMMEDIATE RELEASE

MFEAT welcomes to Manitoba Dr. Leif Sigurdson and his wife Dr. Leanne van Amstel, parents of a child with Autism Spectrum Disorder (ASD) and medical migrants from Nova Scotia. As reported by CTV News last Sunday the family made the drastic decision to leave their careers in Halifax to access treatment for their three-year-old son, who was diagnosed with ASD a year ago. Their son will receive 35 hours of therapy per week in St. Amant's Applied Behavioral Analysis (ABA) program. It is unfortunate the family felt forced to relocate for sake of their child, but as Manitoba residents they will finally have access to the treatment their child needs to develop, while the province also gains two highly specialized medical professionals.

The disruption in the lives of this new Manitoba family is the reality facing many families caring for a child with ASD across Canada. While ASD is a serious neurologic condition of unknown cause, decades of studies have demonstrated that 25-35 hours of ABA per week significantly improves the cognitive and communicative function of children receiving it. The American Academy of Pediatrics, in its 2007 Clinical Report on managing ASD has written, “The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research … Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance …”.

Jamie Rogers, MFEAT’s Director of Communications can relate to the cross-country move made by the family, “When our two boys were diagnosed with ASD in BC in 2005 we were facing a debt of $80,000 per year to secure 35 hours of ABA per week. So we decided to move to Winnipeg to enrol in St Amant’s program. We learned of other out-of-province families in the program who waited tens of months without services following diagnosis or who were offered nothing at all. We are grateful to MFEAT for fighting to get the St Amant Pre-School ABA program in place, which has paid off enormously for our kids. No parent of a child with another serious medical condition has to move provinces or go bankrupt to obtain treatments that are proven effective, so why those with ASD? There is a Senate Standing Committee Report telling the government that families with an ASD child in this country are in a crisis that needs a national response, but it collects dust while our children and families endure major hardships.”

Founded in 1997, MFEAT is an advocacy and support group for families with a child, sibling, or loved one diagnosed with Autism Spectrum Disorder – a neurological condition that affects 1 in 150 children and has no known cure. Following years of negotiation with MFEAT, in 2002 Manitoba introduced a permanent pre-school ABA program for Manitoba families, the only one of its kind in Canada. MFEAT successfully convinced the Manitoba Government to implement a school-age ABA program, which was announced in June.

Media enquiries please contact:
Kevin Augustine, President MFEAT: 204-444-4169

[Andrew Kavchak]

The article below presents another angle on the autism is a "health" issue…

Of course a surgeon can afford to pick up and go anywhere (nothwithstanding that they can also afford private treatment anywhere) since there is a shortage of such professionals everywhere, but what about the average Joe Family?

I only wish the Nova Scotia Minister would tell federal Health Minister Clement what he is quoted below as saying… "Autism continues to grow every year at alarming rates,". Surprise! Surprise!

Last year on "Autism Awareness Day" Mr. Clement posted a message on his department website suggesting that there was no evidence of growth in autism prevalence rates. No! wait! He said that in his official government response to the Senate Committee Report recommending a National Autism Strategy. In either case, the guy on top does not appear to have any idea what's going on.

One note worth mentioning about the Manitoba contribution to our struggle: in 2004 I met with Manitoba MP Steven Fletcher who was the health critic and told him about autism and the discrimination in the Medicare system. He actually called me at home after reading some material I gave him. I thought I had opened his eyes to our community's plight. But then nothing.

I later saw him at a rally when he briefly showed up, and guess what he told me? He had visited the St. Amand location in Manitoba that provided autism treatment and the people there convinced him that apparently everything is "fine" and there was no need to agitate for a national anything because everything was fine with those folks in Manitoba.

He then told me that our community would need to build some consensus as to whether there was a problem in the first place and what our proposed solution was.

I was not surprised that the folks in Manitoba were so short-sighted and unhelpful. Back in 2005 I tried to contact every provincial FEAT and Autism Society organization to get their approval for the wording of a joint text that we hoped to have an MP read out at a press conference about the need for federal action. To my surprise, the person I spoke with from the Manitoba organization stated to me that they were quite happy with their relations with the provincial government and what they were getting in terms of services and they did not want to rock the boat. The individual also told me that there was now "evidence" to support RDI or some other treatment as sound and effective treatment. I honestly felt I was speaking to someone from another planet who was truly "provincial" in her horizons and did not see the "big picture" at all.
____________________________

Sunday, July 27, 2008
THE SUNDAY HERALD
FRONT, Page: A1

Surgeon heads West with family

Doctor says "inadequate resources' for his autistic child reason for move

Chris Lambie Staff Reporter

A reconstructive plastic surgeon is leaving Nova Scotia because he can't get adequate treatment for his autistic child.

Dr. Leif Sigurdson took the unusual step of placing an ad in Saturday's Chronicle Herald explaining his departure.

"I am leaving Nova Scotia due to inadequate resources and services for children with autism spectrum disorder in this province," Dr. Sigurdson wrote.

"I sincerely regret the inconvenience this will pose to the 1,117 patients on my waiting list."

Dr. Sigurdson, who could not be reached for comment, says in his ad that he made arrangements to transfer referrals to the remaining three plastic surgeons at the QE II Health Sciences Centre.

Dr. Sigurdson specializes in breast reconstruction, hand surgery, burns, craniofacial trauma and microsurgery.

"He's a talented surgeon," said his neighbour, Bruce Roald. "I know a lot of people who have done reconstruction from him. It's a real shame that we're going to lose his capabilities here."

Dr. Sigurdson has a young son with autism, Mr. Roald said.

"The son is responding well to treatment, but the program in Nova Scotia only allows 12 hours a week and the child needs much more than that," said the neighbour.

"If he goes to Winnipeg, which is where he's going, he'll get 30 hours (a week)."

The surgeon's son is around three years old, Mr. Roald said.

"He's just at the age where it could make a big difference and I think he's concerned about that, and rightfully so."

Dr. Sigurdson's wife recently completed her studies in radiology, Mr. Roald said. "She's also a medical loss to us."

Mr. Roald said he's "absolutely certain" his neighbours would have stayed in this province if they could have found adequate care for their son.

"She is a native Nova Scotian and he was clearly trying to build a career and a life here."

Health Minister Chris d'Entremont said "we don't want to lose any surgeon for any reason," but he's sure the Capital district health authority will do its best to fill the vacancy created by Dr. Sigurdson's departure.

Services for children with autism have been growing "leaps and bounds" in Nova Scotia since starting three years ago, the minister said.

"Do we have enough services yet? No. But ultimately I think that the acute care system takes an awful lot of money to run and it doesn't leave us a lot of money left over for autism. So I think we're doing pretty well. We need to do a lot more."

The province will spend about $4 million this year on autism treatment, he said. "Ultimately, we do want to add more dollars as years go by."

The province's autism program doesn't cover all children, only those between the ages of two and five, he said. "Children get assessed. Some make it into the program and some don't."

Spending $4 million "really gets us help for about 75 children," Mr. d'Entremont said.

He doesn't know the full number of children with autism in Nova Scotia who need treatment. But he estimates the province will "ultimately" need to spend between $6 million and $8 million a year on the problem.

"Autism continues to grow every year at alarming rates," Mr. d'Entremont said.

The health minister, who has two children, ages five and nine, can see the bind Dr. Sigurdson is in as a father. "I can't fault him for that kind of decision to move away to get more help, if that's what he feels," Mr. d'Entremont said. "Ultimately, I think the program we've got is a good program. Maybe it's not enough time in his mind, but compared to where we were, we've gone a long way."

Vicki Harvey, executive director of the Autism Society of Nova Scotia, said she "felt very sad to see" Dr. Sigurdson has decided to leave Nova Scotia.

[Andrew Kavchak]

Hi Folks,

Well, the hypocrisy of politicians is occasionally so blantant it really makes your stomach turn. As Jonathan Howard runs across Canada to raise "autism awareness", some politicians are trying to jump on the bandwagon as freeriders and get some publicity out of it and pretend their support for the cause.

At his autism blog, fellow New Brunswick parent Harold Doherty has a nice summary of the recent two-faced actions of Colin Carrie, MP. See http://autisminnb.blogspot.com/

Colin Carrie is the Conservative MP from around Oshawa, just East of Toronto. He is another member of the Conservative caucus (beside Mike Lake of Edmonton) who has a son on the spectrum.

In the past Mr. Carrie attended our rallies on the Hill when he was in opposition. He even participated in a press conference! When he became some sort of junior Cabinet Minister or Parliamentary Secretary after the last election both Laurel Gibbons and myself met with him in his offices and pleaded for him to do something. He appeared sympathetic, certainly much more sympathetic than Mike Lake who actually gave us back some pages of the signed autism treatment in Medicare petition and told us he would not table it.

Well, as we left his office Mr. Carrie asked us to send him more information and specifics on what we wanted him to do. We had already told him what we needed and what we wanted him to do but he seemed to have no idea on how to proceed. Nonetheless I subsequently sent him some more information… and…then nothing. Never heard from or about him at all. To my knowledge he has done absolutely NOTHING to help promote the creation of a real and meaningful National Autism Strategy, even though he is a member of the governing party and has a child on the spectrum.

The fact that he voted against Shawn Murphy's Bill to amend the Canada Health Act to include autism treatment in Medicare, just as Mike Lake did, just goes to show how politicians care more for their own careers and pensions than doing what's right for the most vulnerable citizens of our country, including members of his own family. Although Mike Lake issued an idiotic two-page letter attempting to explain why he voted against it (you don't think he would tell the truth do you?) which FEAT of BC refuted in an annotated version (scroll down this board to see the link sometime in early 2007), Colin Carrie did not even bother to feel any need to justify his actions with a similar letter to the public.

But when Jonathan Howard ran through town, there was Colin Carrie having his picture taken with Mr. Howard. If this keeps up I might start a business selling barf bags on Parliament Hill for all those of us who simply cannot stand the hypocrisy anymore.

[Andrew Kavchak]

Hi Folks,

Well, over the years our community has made progress in getting on the political agenda and having resources allocated to help our children. Of course, these incremental steps forward came with great hardship, including the trials of court trials and Herculean efforts by many parents and organizations. In some jurisdications there have been greater gains than others. Clearly, there is so much more that needs to be done to finally get autism treatment covered in Medicare.

But just when you think that the trend has been established and that it is just a matter of time, the reality that in politics what can be given by the big print, can be taken away in a jiffy by the small print, is always just in front of our faces. Take the recent case of Northern Ontario for example.

Since Liberal Premier Dalton McGuinty was elected he has done everything with his media spin people to give the impression that the autism file was being addressed and that before the last election it was solved.

Well, not quite.

Please see below from today's Kingston Whig-Standard, (Monday, July 21, 2008), an article following up on a press release that was issued last week by an organization about the service cuts to kids with autism. For the record, I have a hard time believing any Ontario government claim to increased spending on autism programs. A few years ago at a demonstration in front of the Premier's consituency office, an NDP critic (Shelley Martel) spoke about how the Access to Information Act requests she had made revealed that some $53 million in funds originally budget for autism programs were diverted to other programs that had nothing to do with autism.
________________________________

Autism funds not coming: agencies

Groups say Ontario failing to meet promises, forcing services to be cut

MARIA BABBAGE, THE CANADIAN PRESS

The liberal government is failing to live up to its promises to adequately fund early therapy for autistic children, forcing some service providers to turn away families who've waited years for an expensive but crucial treatment, agencies say.

Child Care Resources, a non-profit agency in northern Ontario, will be facing a $2.5-million deficit by the end of the year if the province doesn't deliver promised funds that would cover the cost of providing intensive behavioural intervention (IBI) therapy, said Maxine King, chairwoman of the agency's board of directors.

"Our backs are against the wall at this point, as far as getting further and further into debt," King said in an interview from Sudbury.
"We knew that if this didn't get resolved, that we have a very small window of opportunity to make an immediate change."

For over a year, the Ministry of Children and Youth Services has instructed the agency to provide services to more children with the promise that additional money would follow to cover the extra costs, King said.

But officials now say the ministry doesn't have the funds to meet that shortfall, leaving Child Care Resources with a $122,000 deficit, she said.

Children who are currently receiving help won't be cut off, but to avoid widening its deficit, the agency has no choice but to stop accepting more children who need the therapy, King said.

Some families may now have to wait up to two years for IBI therapy, rather than six months, she added.

"That's the saddest thing," King said.

"This, for many of them, was the light at the end of the tunnel – knowing that their child was on a waiting list and that they would be able to, hopefully in the near future, be receiving this therapy."

Other agencies also say they can no longer afford to provide the therapy to more children.
Markham-based Thames Valley Children's Centre, which operates in southwest Ontario, found a way to balance its books but only has enough funds to maintain its current level of service, said CEO Dr. John LaPorta.

The agency currently delivers IBI therapy to 87 autistic children, but won't be able meet its target of 101 kids this year as set by the province, he said.

Algonquin Child and Family Services, which helps to autistic children in northeastern Ontario, is facing a $900,000 deficit, although it's working with the province to deal with the shortfall, said executive director Jeffrey Hawkins.
Children and Youth Services Minister Deb Matthews said provincial funding for autism services has kept pace with the number of children receiving IBI therapy, which reached 1,400 this year. The funding has more than tripled to $150 million this year from $44 million in 2003, when the Liberals were elected, she said.

But Matthews said she's also "very concerned" about the deficit at Child Care Resources, and has appointed a team to investigate why the agency is facing financial troubles.

"I've got very good people going in, because we have to get to the bottom of it. We have to understand it," she said.

"But until we get the information we need, I don't think it's fair to families to start talking about service cuts."

Surrey Place Centre in Toronto, which provides services to 330 autistic children, is not facing a deficit, said Elizabeth Scott, the agency's vice-president of autism services. It's found ways to cut costs, such as creating classrooms where children can receive IBI therapy.

Critics warn the backlog will lengthen an already growing list of 1,100 autistic children who are still waiting to receive the therapy.
"It's obvious that the Liberal government is breaking its promises on autism," said NDP critic Andrea Horwath.

"It looks like the people holding the bag are these agencies – these not-for-profit agencies – that are going to be stuck having to decide and having to be the bearers of bad news that the government hasn't lived up to its promise."

Stacey Sayer, a 38-year-old nurse in northern Ontario, said she's waited two years for her 9-year-old autistic daughter Maggie to receive IBI therapy and there's still no end in sight.

The closest place where Maggie can receive autism services is in Timmins, an hour-and-a-half drive from their home in King Kirkland, a small community east of Kirkland Lake.

The family also makes frequent trips to North Bay, Toronto and Ottawa to meet medical appointments for Maggie, who also suffers from Down Syndrome among other disabilities and needs constant care.

There are IBI therapists in Kirkland Lake, but Maggie can't receive the therapy until she makes it to the top of the wait list, said Sayer. And

Maggie can't move up the list until the therapy is provided to another autistic child in Kapuskasing, which doesn't have workers to provide the therapy, she said.

"We're very worried, yes, that time is ticking away and we're not getting what we need, and she's not getting what she needs," Sayer said.
"We're worried about her whole future and what's going to happen to her in the end."

[Andrew Kavchak]

Hi Folks,
I just sent the ASC an email asking them to explain something relating to a story in a newspaper in which the ASC is represented as taking a particular non-position. Can anyone explain just what is their purpose anyway?
__________________________________

Dear Autism Society of Canada,

I would like to ask that the ASC please issue some sort of clarification on its website regarding the recent quote in the newspaper (see below) in which an ASC official is quoted at the end of the article and the ASC is represented as not endorsing any method of treatment.

This is really a big deal. Please do not ignore it. This kind of lack of consistency, clarity and specific purpose and meaningful objective is one of the reasons why those with autism who could benefit from evidence-based treatment have not been able to access it in this country.

For years the ASC has stated that it supports "evidence-based treatment", including during their slideshow presentation by the former President Mr. Zwack to Parliamentarians in the West Block in 2004 (which I attended). Yet, every time that I asked the former manager of the ASC to specify which treatment does the ASC consider to be "evidence-based", she refused to go into details. I remember once reading an ASC document that stated "for example, ABA", which implied that there was something else that was evidence-based besides ABA. When I asked about that I never got a reply.

Please see the insightful commentary on this matter at the blog below.
http://autisminnb.blogspot.com/

With respect to the validity of treatments and the identification of the "evidence-based" one, you must surely by now be aware of the recently published guide by Dr. Sabrina Freeman (see http://www.skfbooks.com/). How can anyone who has gone through the book and is familiar with the material suggest that the current state of science and treatment is "not clear" and that there is insufficient information to endorse "scientifically validated and evidence-based" treatment?

Incidentally, when Jonathan Howard ran to Parliament Hill on June 30, I was there to welcome him with a large banner which stated "Medicare for Autism Now!". This was an important day in my family's life because it was the same day that my own son was having his funding for treatment cut off by the Ontario "social services" department, or whatever they call themselves now. There were no other autism signs or banners on the Hill. The picture of Jonathan with the banner is on Jonathan's blog, as well as a recent edition of his newsletter. Although the ASC took several pictures of the event, including both with an without the banner, a picture with the banner does not appear on the ASC website. Is there any specific reason why the picture with the banner is not on the website or was it an inadvertent oversight? If so, any chance that you may put the picture on the ASC website? Is getting autism treatment in our public health insurance program a problematic issue for the ASC? If so, why?

Thank you for your consideration of these matters .
Andrew Kavchak
Ottawa

Friday, July 11, 2008

More than one approach to autism
FACING LONG DELAYS for diagnosis and provincially funded therapy, couple turned to More Than Words therapy for son
CHARLIE FIDELMAN, The Gazette

Christine Booth first knew something was terribly wrong with her young son when she saw him run to the television to watch his favourite movie, The Incredibles, plaster his face to the screen and flap his arms.

"He was nose to nose with it, watching the lines and the pixels, and he was hitting the TV so hard I worried it would come tumbling down," Booth said. "Someone mentioned autism and the alarm bells went off in my head."

Autism spectrum disorder is a common neurological condition affecting one in 165 children, mostly boys. Symptoms vary, but many have trouble communicating and forming relationships. Its causes are not known.

An estimated 600 Montreal area children with symptoms of autism are facing two-year delays for diagnosis and government-funded therapy.

Rather then wait, Booth and her husband, Robert Ménard, of Hudson took action. They put Alex, then 21/2, into private therapy – without an official diagnosis first.

"My brother's son is autistic and he's a year and a half older," Booth said. "I'd seen similarities."

Alex didn't babble like a normal child, and he had uncontrollable tantrums. He hardly looked at his parents and he preferred to be alone in his room.

"Imagine if someone put duct tape over your mouth and you had to carry on," Booth said.

"You'd be very frustrated. As a parent you want to alleviate that. Why wait for a diagnosis?"

As delays mount, parents are tapping into alternative forms of treatment.

One approach that is getting serious attention is called More Than Words, and parents like Booth and Ménard swear by it.

Developed by the Toronto-based, non-profit Hanen Centre, which provides early language intervention programs around the world, the method is a training program for parents.

At its core is the belief that, as the most constant person in their child's life, parents know their children best, said Fern Sussman of the Hanen Centre and author of More Than Words.

The More Than Words method shows parents how relate to their children "so they are not so dependent on therapists," Sussman said.

"Little 2-year-olds sitting at tables being drilled, that's not how children learn language," she said.

Several U.S. universities are researching the method, and the Montreal Children's Hospital – in conjunction with the McGill University Health Centre – is to issue results of a major study on the Hanen method this fall.

Joining six couples, Booth and her husband attended the More Than Words course in Montreal with Hanen expert Nancy Ship.

Alex, now 3, isn't speaking yet, but the eight-week course has had a huge impact, Booth said. "He's much happier and the training is giving us some control."

The first thing they asked Ship was what to do about the TV.

"He didn't want anything but the TV," Booth recalled.

Ship told them to get rid of it.

She then coached them on developing "play" based on the 400-page, illustrated Hanen handbook that comes with the course. It isn't available in bookstores.

Booth and her husband now use chase and tickle games with Alex, plus sign language, facial expressions, gestures, songs, homemade toys (a plastic bottle filled with rice) and a Velcro board with pictures of juice, an apple or milk.

"Now if Alex wants something, he'll take it off the picture board," Booth said.

"You're getting feedback from your child and there is a back and forth going on. Before, he'd just scream because he's not understanding what you want and you don't understand what he wants."

With tickle and swing games, Alex learned to make eye contact and to communicate that he wants "more."

"Fun is involved, so it doesn't seem like learning or work," Booth said.

"And it's the child making the choices, not you."

Following Ship's advice to take their cues directly from Alex's interests, Booth downloaded music soundtracks from her son's favourite films.

"He started dancing and that was our biggest connection with him," she said.

Parents in the program are encouraged to create their own books, songs and games to share with their children.

The Children's Hospital's lead autism researcher, Eric Fombonne, chief of pediatric psychiatry at McGill, said it's too early to say whether More Than Words is effective or even better than no treatment at all.

Of the 350 children assessed annually at the hospital's autism clinic, 72 participated in the Hanen study last year.

"Parents loved it," Fombonne said of the Hanen method.

"It gives parents strategies while waiting for (therapy). The training is brief, but the effects are lasting – if they continue to use the strategies."

But most parents don't know about it.

Behaviour therapy is considered the treatment of choice and it is the only program the province funds to treat autistic children under 6.

In Ontario, the method is considered an effective "language initiative" and is subsidized.

Although many children benefit from behaviour therapy, it has been criticized for relying heavily on a system of drills and rewards, resulting in appropriate but robotic behaviour, groups of parents and therapists contend.

Psychologist Katherine Moxness dismissed the notion that behaviour therapy churns out little robots.

Speech and behaviour are in different therapeutic camps and that has been an issue for decades, said Moxness, director of professional services at the Gabrielle Major, Lisette Dupras and West Montreal Rehabilitation Centres, which together treat about 75 per cent of children with autism in Montreal.

Because autism is a disorder that touches many areas, "you need a comprehensive approach, and to me Hanen doesn't cover it," Moxness said.

"Hanen won't hurt a child, but in my opinion it's not comprehensive enough and it's not quantifiable."

The field is fraught with divisions, said Ship, an outspoken, 79-year-old speech pathologist from the defunct Baldwin Cartier School Board.

"It's a sad story," said Ship, now a consultant for the West Island Association for the Intellectually Handicapped and the private Pat Roberts Centre for special needs children.

"It reminds me of what happened with the deaf population years ago. The oralists don't go near sign language and the sign language people said don't go near the oralists.

"This is not a skills-training course – it's a connecting, communication course," Ship said. "And because of that, results are difficult to measure."

Ship coaches about 20 parents a year. To avoid creating another waiting list, she doesn't advertise. Parents find her by word of mouth.

Some try many methods of dealing with autism simultaneously. Booth hired a behaviourist to come to the house once a week to work with her son while training on Hanen.

Halfway through the course, Booth and her husband got a preliminary assessment from the local CLSC psychologist.

Alex's autism was confirmed.

The family is now trying a treatment called relationship development intervention, a relative and unproven newcomer to the autism field. It's also costly, starting at $2,500.

"They say that the early years are crucial, and if something is going to work, we don't want to miss the boat," Booth said.

Kathleen Provost of Autism Society Canada noted a lack of consensus among experts about the best ways of dealing with the condition.

"What we have the most researcher and information on is behaviour therapy," Provost said.

The society does not endorse any method.

"Some of it is new and we don't have enough information," Provost said. "We leave it up to the parents to make decisions."

cfidelman@thegazette.canwest.com

Information on More Than Words is available at the Hanen Centre. http://www.hanen.org

For early stimulation programs, call the West Montreal Rehabilitation Centre, 514-363-3025, and ask for the access-to-services department.

The Pat Roberts Centre offers early stimulation for a fee. Call 514-696-5144.

West Island Association for the Intellectually Handicapped, 514-694-7090, Local 14, or visit http://www.wiaih.qc.ca

ILLUS: Colour Photo: DAVE SIDAWAY, THE GAZETTE / BUBBLY DELIGHT: Speech pathologist Nancy Ship looks on as parents Robert Ménard and Christine Booth amuse their autistic son Alex, 3. ;

[Andrew Kavchak]

Hi Folks,

The local Ottawa CBC evening news on tv last night had a good short clip of Jonathan Howard's run up to Parliament Hill along with the specific mentioning of the fact that Senator Munson is calling for a National Autism Strategy. The news story finished with a beautiful shot of Jonathan and a few others behind the large "Medicare for Autism Now!" banner. Perfect.

If you look at what Jonathan wrote about it on his blog (http://runthedream.blogspot.com/) you will see his write up on the event, including a few pictures, with my favourite one being the one with the "Medicare for Autism Now!" banner.

In contrast, on the Autism Society of Canada website you will see another write up on Jonathan's arrival in Ottawa, including some pictures that were taken at the same spot… but no pictures of any "Medicare for Autism Now!"
banners.

Why?

Too political? Too serious? Too specific?

Maybe the Autism Society of Canada just does not want "Medicare for Autism Now!"? Naw, that can't be it. After all, in the past year they issued and posted several unprecedented letters to the federal Health Minister questioning the developments of the "autism symposium" and several press releases expressing a desire for a National Autism Strategy. Speaking of symposium, the report of the November 2007 autism symposium was made public on the CIHR website a little while ago. Did the Autism Society of Canada issue any commentary? Given their previous interest in the symposium it would be interesting to see what they think of it.

But then again, my parents always told me that if you don't have anything good to say, don't say anything. I always had difficulty complying with such wisdom, and frequently envy those who found compliance easier than I do.

[Andrew Kavchak]

Hi Folks,

Well, this morning Jonathan Howard made it to Ottawa and Parliament Hill as part of his "Run the Dream" cross country run to raise awareness and funds for Autism Spectrum Disorders. It was kind of weird. On one hand, his splash into Ottawa appeared well coordinated with "advance people" on their cellphones, but on another level is was disappointing.

I got up to the Hill at 9 am with two of my FEAT BC produced and paid for "Medicare for Autism Now!" banners. Today is really not a good day to be doing any such events on the Hill. Although the weather was excellent, the temporary stage for tomorrow's Canada Day celebrations (which takes up practically half of the space in front of Centre Block) was having its sound system tested. Various bands were playing and it was extremely loud and impossible to speak over.

Nonetheless, I saw the local CTV crew with the weatherman, JJ Clark, and asked if they were there to cover the Jonathan Howard story. Nope. They were there to do the weather every few minutes live on "Canada AM".

The idea was that Jonathan Howard was going to start a run at 9am at an exclusive school in the Rockcliffe Park area just East of downtown, and run to the Hill with all his supporters. One good stroke of luck was that the local CBC tvevening news anchor lady, Lucy Oldenbarnaveld, was willing to run with him, and that ensured that a local CBC camera would be there. Thus, this will at least be covered on the local CBC tv news.

However, he would be expected on the Hill just before 10am. But wait! The ceremonial Changing of the Guard takes place on the lawn between 10am and 10:30am. Absolutely nothing else on the Hill will get any attention while the Governor General's ceremonial footguard platoons are going through their choreography with their band playing in the background.

So I waited and wondered what to expect. Across the street I looked at the statue of Terry Fox. Next to the statue there was a white tent top with a table underneath it. Six people there were obtaining pledges and registrations to run and walk with the upcoming visit by the Fox family with the refurbished van that was used during the original Terry Fox run back in 1980. I went over and talked to one of the young persons behind the table there about how Fox inspired many people to run for causes including someone who left Newfoundland a few months ago and will be arriving on the Hill in less than 30 minutes to raise awareness for autism. The poor woman gave me the impression she could care less.

Apparently no one else did either. I went back to the Ceremonial Flame and watched as more and more tourists set themselves up around the lawn on the East side for the Changing of the Guard. I could not recognize any faces that I knew from the autism community anywhere.

Then a fellow that I had never seen before came up to me and asked me if I was Andrew Kavchak. It turned out that he and his sidekick were with the runner's support team. They came to the Hill with some water bottles. Nothing else. They recognized me by my autism signs which were still rolled up, but evidently easily identifiable. I spoke with the two gentlemen. Apparently the group running with Jonathan was no more than 10 people, including Lucy CBC and Senator Munson (who was on rollerblades!).

I asked them when were they expected to arrive? At about ten to ten. "What!?" I wondered. And what were they going to do in terms of positioning and photo ops and speeches?

"We'll go to the Centennial Flame and play it by ear" I was told. "What?" I wondered. Between the Changing of the Guard and the Canada Day sound system check, and the multitude of tourists coming for the Changing of the Guard, I did not think anyone would notice anything else and that screeming would not help.

Shortly afterwards a fellow autism parent, Sandy, showed up and we went to the flame area and unrolled out large "Medicare for Autism Now!" banner. A lot of tourists looked at us and had to reposition themselves to avoid us when taking pictures of the Centre Block and the Peace Tower.

Then, a lady named Kathleen came up to me and told me she was from the "Autism Society". I did not bother to ask which one, but it then occured to me that she was with the Autism Society of Canada and she brought her family and a camera. Good thinking!

Then three other parents that I know showed up, Ania, Brenda and Pat. That was it from the Ottawa autism community!

Then the big moment came! As the tourist crowds grew facing the lawn near the East Block, suddenly in the crowd I saw Jonathan Howard, whom I recognized from pictures, Senator Stanbury, Lucy CBC, and a few others whom I did not know.

Well, we greeted each other with lots of handshakes, hugs, and words of congratulations. The CBC cameraman and several people with cameras (although it did not appear that there was any other media than the CBC tv crew), took pictures of Jonathan and all of us standing behind the banner. Thank God I had it. Without it there would have been no written message to mark the purpose of the event.

Mr. Howard stood there, but as his team did not appear to have anything special lined up, I jumped up on the edge of the fountain around the Centennial Flame and started yelling to get everyone's attention, including tourists. Once I had their attention I indicated that we have a new Terry Fox with us, and that Mr. Howard just arrived all the way from Newfoundland to raise awareness for autism and I encouraged everyone to give him a round of applause. Then I welcomed him to town on behalf of our community and wished him good luck. I wanted to say more and then have him speak, but the sound system check suddenly increased its volume and then the noisy parade of the Ceremonial Guard arrived. That was the end of any speeches.

So we stood for a few minutes and talked. So we took some pictures. And then we took more pictures.

Finally I had a few moments to speak with Jonathan. He is a handsome and photogenic young man. Obviously in good shape. But is he related to anyone with autism? No. So he is doing this because he has worked with some autistics in the past and knows it is a good cause. Right. That's good! But what is the cause? He spoke with five Premiers so far, and expects to meet all the rest. Tomorrow he has a meeting with Stephane Dion, federal Liberal Party Leader. What will he tell him? Well, I don't really know.

And I somehow don't think Jonathan knows either. To my surprise, he had never heard of the "Auton" case. Was not aware of the National Autism Strategy (NAS) initives our community has been pursuing for a few years, and did not know of any of the Motions or Bills tabled in Parliament about autism, or their fate. The Senate Committee report and recommendation for a NAS, and the government's reply which ignored the recommendation, were not things that he seemed to be "aware" of himself.

I suggested that he pressure Dion to make a commitment to get autism treatment in Medicare and implement the content of the NAS Motion and the recommendations of the Senate Committee report. But it would be hard to do that with any convincing arguments if you had never read them and were unware of them or the context of their parts in the whole autism policy lobbying history.

What exactly was he running for, I wondered. Nonetheless, anyone who can get "autism", "autism", and more "autism" in the news is a potential ally and may be doing us all a favour.

However, the full potential of the opportunity presented was not taken advantage of. First, as he will be in town for a week, the run to the Centennial Flame should have been on Wednesday or Thursday, after the Canada Day hoopla was over, after people had come back to town as many took a long weekend vacation, and certainly not in the morning period when the Changing of the Guard drowns out everything else. There should have been more media journalists and photographers there for more media coverage, and some sort of set up to allow local folks and politicians to welcome him and for him to get up and say his message into a microphone (or my preferred megaphone) for all to hear. Instead, he left without anyone having heard him say anything (apart from the short interview he gave the CBC which will probably be edited).

Then he left with his crew and I left with two other parents. As we walked away we commented on how the local turnout was even worse than we expected. Imagine that! Someone is running across the country to raise awareness of autism issues (that he is not apparently fully aware of himself), and in this most important city because of Parliament only four local parents showed up to welcome him and express our support. But then again, even if more people had turned up, they would have only been able to shake hands with the gentleman, and would not have been able to hear him speak or to be part of the background in any media scrums. Maybe the Ottawa community knows something we don't!

At one point I asked an older gentleman who was part of Jonathan's "team" how the fundraising was going. He told me that they were short of what they hoped for by now, but when I asked him how much they had raised so far he refused to tell me and stated "I don't know" (which I did not believe) to end the conversation as he turned away.

Mr. Howard expects to arrive in Vancouver in December.

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