[FEAT BC Admin]

In this topic area, discussion is about the fight to secure Government funding for your A.B.A. treatment program. It is also the place to talk about your thoughts and ideas about how to establish new Government programs specifically designed for autism treatment.

This is the place to hear input from parents who have fought for funding and won, as well as those who have fought for funding and would like to share their horror stories. There is a tendency to not share success stories once funding is secured. Please fight that tendency. By sharing our experience, we all become stronger.

 

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—-By FEAT BC (Freeman) on Saturday, January 3, 1998 – 03:16 pm:

-Hi everyone!

These are some things to think about in your dealings with government to help you to obtain support for your child’s Autism Treatment Program. These are my personal opinions and do not represent those of FEAT of BC or any other organization.

Many of these observations are based on my personal experiences (and I believe it poetic justice to help every parent avoid being systematically abused by their social worker the way I was).

Good luck to everyone! (Let’s all pull back the curtain on the Wizard of OZ).

Sabrina

 

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How To Fight for Funding for Autism Treatment and Appropriate School Placement

1. Establish a Paper Trail

Always take notes, documenting major points of all conversations with government and school officials.

This includes casual, in person conversations with social workers as well as ALL telephone conversations. All key points of discussion must be written down in your notes including the date and time of the discussion. This includes what was agreed upon, as well as what was not agreed upon.

Then the notes should be used to write a letter recapping the substance and content of the conversation. This letter must then be mailed or faxed to the person with whom you had the conversation. In addition, a copy must be kept in your file (see section on the icci game).

Why?

It is important to formalize the interaction between you and Government officials. In addition, everyone is put on notice that they must closely adhere to their responsibilities, regulations and laws., Furthermore, they must then consider the paper trail you have created. This lets everyone know that the interaction can become public and that any abuses of power and authority can be formally appealed and/or publicized.

In other words, they canit use discretion unfairly under the cloak of secrecy.

2. Submit all Requests in Writing

All your requests for your child must be submitted formally in writing with a copy included in your file and a copy, if necessary, sent to their immediate superiors.

3. Set Deadlines for Action

All formal requests for action must have a reasonable deadline set for that action. If no action or response is received by the deadline you have set (two weeks for example), then you will interpret the lack of response as a formal declination (a formal NO) of your requests.

Why Set Deadlines?

When bureaucrats do not want to do something, they will stall by ignoring you and your request. (As an aside, in the study of the bureaucracy, this is known as ithe power to do nothingi). They can string you along for years. When you have determined that the person you are interacting with is not inclined to help you or is not dealing in good faith, then you must take the initiative and formally label his/her behavior as obstructionist and de facto as a declination (a NO to your requests). This allows you to move to the next level of authority on your timetable to present your case. This takes the power to do nothing away from the bureaucrat with whom you are dealing. Simple stated, a bureaucrat who stalls and does nothing becomes irrelevant (use your invisible spray) and you move on to the next level of authority.

How to icci?

A cc. is a copy of your letter sent to someone other than the person you are writing. You put the cc. at the bottom left-hand corner of your letter followed by 2 spaces and the name of the person or people to whom you want to send a copy of the letter.

Who to icci to?

Sometimes it is best not to icci at all, especially in the early stages of the relationship (for example, your first letter to a social worker requesting assistance). This gives them the opportunity to do the right thing and does not present you as an overly combative person. When you start to run into problems, it is a good idea to send the icci to the 2 immediate superiors of the person you are having problems with. We do not recommend icciing all the way up the chain of command, since you want to give them a chance to solve the problem at the local level.

Why send a icci copy?

The reason for playing the icci game is that you want your interactions with the official to be known to his superior and possibly to other organizations so that 1) their action or inaction becomes a matter of record and 2) the individual knows he is being monitored. This helps minimize abuses of power and authority and helps encourage the official to meet their obligations and do the right thing.

What is the sequence of letters?

Find out the chain of command of the particular bureaucracy you are battling.

TOP

Minister
Deputy Minister
Children’s Ministry’s local region chain of command, all the way down to the District Supervisor
and Social Worker
Contacts can be found at the government directory: http://www.dir.gov.bc.ca/

BOTTOM

Start at the bottom and climb. At the Regional Operating Officer (ROO) level (once you have been declined) you have to decide whether to jump up to the top, threaten and then go to the media, or both. A word of wisdom: DO NOT BLUFF. If you are not willing to go all the way, they will ‘smell’ this. You must be prepared to take it right up to the Minister and beyond.

Documentation from Experts:

In your arsenal to fight for your child, it is wise to get his/her pediatrician and/or psychiatrist to write a letter on your childis behalf. In addition, any other experts who know your child and are sympathetic to what you are trying to do should become involved.

When to hire a lawyer?

If money is not an issue, you can hire a lawyer when you get to the area manager level. Make sure that you have a paper trail so the lawyer has something to work with. Also, have the lawyer give F.E.A.T. of B.C. a call, and we will send him/her information that will help.

If money is an issue (as it is for most of us running autism treatment programs), you might want to hire a lawyer once you have been turned down by the Minister.

How to hire a lawyer?

The type of lawyer needed is a litigator, or trial lawyer. S/he does not need to be an expert in autism, or special needs; s/he needs to be experienced in suing governments, and enjoys being in court. Word of mouth is a good way to find a lawyer.

Topic

[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."

[Dione Costanzo]

Hi Everyone,

Please take a few minutes to check out the Medicare for Autism Now! blog at

http://medicareforautismnow.blogspot.com/.

It has recently been updated with footage of Jean Lewis' Canada AM interview, as well as news from the Medicare for Autism Now! information booth on Granville Island in June.

Please check out the blog and pass the link to all your contacts.

Thanks!

MEDICARE FOR AUTISM NOW!

[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.

[Andrew Kavchak]

Hi Folks,

As you may have heard, there if a fellow named Jonathan Howard who is running across the country to raise awareness, and funds, for autism.

He started in Newfoundland a while ago and has been causing an increasing stir in Eastern Canada as he made is way from provincial capital to provincial capital. Recently he met with several provincial Premiers.

This reminds me of the brave efforts of a B.C. parent a few years ago who wished to similarly raise awareness by walking across the country with a bag of cement to symbolize the challenges that families face when a member is affected by autism. Regrettably, he did not make it beyond New Brunswick.

Well, it appears that Mr. Howard is expected to reach Ottawa on Monday morning, June 30. He will be running with the local CBC tv news anchor from a local college starting at 9am on Monday and are expected to arrive on Parliament Hill shortly afterwards. I understand that Senator Jim Munson will join the event.

I plan on attending with my "Medicare for Autism Now!" banner. Regrettably, Parliament's session ended last week so few politicians are in town and since Tuesday is a holiday, many people are taking the day off and leaving town for a four-day weekend. However, on slow news days this could be a major headline. We'll see.

In any event, this run appears to be quite well organized and it is coming to a city near you…eventually.

[Andrew Kavchak]

Hi Folks,

So how's that new "Mental Health Commission of Canada" coming along?

I have not heard anything since the creation last year and the announcement that Senator Michael Kirby was going to be its first chair.

Back in 2004 I met with him in his office along with a fellow Ottawa autism parent Laurie-Anne Shonuck and we had a very interesting meeting. He was actually interested and appeared to want to help. Regrettably, I never heard from him afterwards and am not sure what initiatives he has taken regarding autism.

But if you visit their website at http://www.mentalhealthcommission.ca/index-en.php
they seem to have a number of projects and "key initiatives" going…including the development of a "National Strategy". Here is what they say…
_______________________
NATIONAL STRATEGY

Canada is currently the only G8 nation without a national strategy to address mental illness.

The lack of a national approach to mental health issues represents an important national deficiency and also prevents implementation of concrete initiatives at a national level that would benefit people living with mental illness throughout the country. The Commission will work with all members of the mental health community to help develop this national strategy.
_______________________

Any chance their "national strategy" may have an autism component to it? What if the Mental Health Commission of Canada was flooded with letters from the autism community across Canada asking them to assist in the struggle for the development of a meaningful National Autism Strategy? Would anything happen? Would anything change for the better? I wonder.

[Andrew Kavchak]

Hi Folks,

Ever get the impression that some people in the community just don't know what is going on? Or that some really don't seem to understand who is helping the cause and who isn't? Or that some who may be thinking that they are helping sometimes end up shooting themselves (and indirectly all of us) in the foot and don't really seem to even be aware of it? Ever get the impression that some people fit in each of these categories?

Take the Autism Speaks Canada organization for instance. During the Senate Hearings into funding for the treatment of autism, the Executive Director was asked if she supported an amendment to the Canada Health Act to include autism treatment in Medicare. She replied that she did not, and her reason was that it would get "bogged down" in Parliament. This, from an organization whose parent organization in the U.S. spearheaded the "Combating Autism Act" through the U.S. Congress and got an extra $1 billion for autism research, diagnosis and treatment. Apparently the effort ain't worth it in Canada.

If that is not enough, the organization raises tons of money, and then posts information on its website that it grants money to people like "Dr." Laurent Mottron in Quebec, who has been one of the most active anti-ABA personalities in Canada, along with his sidekick, Michelle Dawson (remember her? a newspaper report a while ago revealed that she self-diagnosed herself as autistic – she interevened at the SCC in the Auton case against the autistic kids getting access to ABA).

Autism Speaks released the press release below about an event they are doing in Edmonton. Note the reference to Mike Lake, MP. This Conservative MP from Alberta (where else?), has a son with autism. After his nomination and prior to his election he did not reply to any communication from members of our community that I am aware of.

When Laurel Gibbons and I met with him in Ottawa after his election, he not only gave us the impression that he really does not know much about autism (for example, when provided with the latest CDC prevalence rate figures of 1 in 150, he simply dismissed it and said "I don't believe it" – you get the picture, the problem really is not that big a problem), but he is the only politician that either of us had ever given the autism treatment in Medicare petition to for tabling, and after he glanced over it he immediately handed it back to us and said that he won't table it.

If that was not shocking enough, he successfully worked on watering down the wording and content of Andy Scott's Motion for a National Autism Strategy. Furthermore, and of a much more disgusting and shameful nature, he not only voted against Shawn Murphy's Bill to include autism treatment in Medicare, but he actually issued a two page letter explaining his deeply flawed reasons for voting against it, which was used by many Conservative MPs to explain why they voted against the Bill (after all, if a parent with an autistic kid voted against it, it must be "bad law", right?).

To its credit, FEAT of BC is the only autism organization that has exposed the fraudulent and irrational arguments in the letter and posted an annotated version on this website.

More recently, Mike Lake's contribution to the advancement of the autism community's interests, (including that of his own son!), was to appear as the government spokesperson in the recent CTV W5 story on autism treatment in Medicare where he stated to the camera that this matter has nothing to do with the federal government (you know – the old "jurisdiction" argument which is convenient for washing your hands of a matter when you want to, as opposed to the "leadership" argument when the government frequently wishes to change the world order regardless of what "jurisdiction" says – eg. the national cancer strategy or federal efforts to create a national securities regulator, etc.).

And what does Autism Speaks now say about Mike Lake? First, they not only give him a platform to speak and further give him credibility to disseminate his "we can't do anything" argument, but they actually give him credit for….wait for it….being "instrumental" for having had the first UN World Autism Awareness Day recognized in the House of Commons.

Let's reflect back on what was said in the House on that day (just scroll down this page to the area around April 2). On that day Mike Lake made a statement in the House about his son having autism and what a sweet boy he is. On policy issues, his statement was devoid of any content. However, moments later Andy Scott got up to also recognize World Autism Awareness Day and pointed out that it had been a year since his "National Autism Strategy" Motion was passed by the House and that the government had done nothing to implement it.

So which MP does Autism Speaks Canada provide support to? I think they picked the wrong guy.

I have been asked to contribute to the Autism Speaks walkathons, etc. and I just can't seem to get myself in all good conscience to do it. Can you blame me? Obviously I wish them success in all the good things that they do that are indeed truly helpful to the cause, but I have some major differences with them in my view as to what helps the cause and what does not and I believe that their frequent shooting us in the foot makes it an organization that needs some new leadership and new thinking.
_______________________
Attention News Editors:

Dr. Lonnie Zwaigenbaum keynote speaker at Autism Speaks event this Sunday

Local MP, Mike Lake and family to join
families, service providers and other community supporters at Walk Now for Autism Kick-Off Lunch.

EDMONTON, June 20 /CNW/ – On Sunday June 22, Dr. Lonnie Zwaigenbaum, Associate Professor, Department of Pediatrics (University of Alberta) and Co-Director of the Autism Research Centre at Glenrose Rehabilitation Hospital will be the keynote speaker at a free luncheon hosted by Autism Speaks Canada. Dr. Zwaigenbaum will address families, friends, service providers,
educators and others interested in learning more about current trends in autism research with emphasis on the exciting discoveries of the global High Risk Baby Siblings Research Consortium, of which he is a key member. "Lonnie
has an outstanding reputation for his ability to translate science into plain language and we are so excited that the autism community will have the opportunity to hear his dynamic and informative presentation," notes Suzanne
Lanthier, Executive Director of Autism Speaks Canada.

Mike and Debi Lake will be in attendance along with their children, Jenae (age 9) and Jaden (age 12). Jaden is affected by autism. Mr. Lake, who was instrumental in having the first UN declared World Autism Awareness Day –
April 2, 2008 – recognized in the House of Commons will be joined by Jaden to talk about his experiences as a parent of a child on the autism spectrum.

Also speaking will be Krista Hauffe, Miss Teen Edmonton International 2008, who has a personal connection to autism. Representatives from community partner agencies, Children's Autism Services of Edmonton and the Autism
Society of Edmonton and Area will be joining the luncheon, expected to draw
over 120 people.

The luncheon is the official kick-off event for Autism Speaks' Inaugural Edmonton Capital Region Walk Now for Autism being held on September 7 at
Lion's Park/St. Albert Place in St. Albert. The luncheon is being held at the Fantasyland Hotel from 11:30 – 1:30 PM. The event is free and lunch will be provided but pre-registration is required by calling 1-888-362-6227.

Autism affects one in every 150 children. One in 94 boys will be affected. More children will be diagnosed with autism this year than diabetes,
cancer, and AIDS combined.

Autism Speaks' Walk Now for Autism, North America's largest grassroots autism walk program, is our signature fundraising and awareness event, taking place in communities across the Canada, the United States and the United Kingdom. Powered by volunteers and families with loved ones on the autism
spectrum, this successful grassroots fundraising effort not only generates vital funds for autism research but also raises awareness about the increasing prevalence of autism and the need for increased research funding to combat
this complex disorder.

Autism Speaks is dedicated to increasing awareness of autism spectrum disorders; funding research into the causes, prevention and treatments and advocates for the needs of individuals with autism. To learn more about Autism Speaks, please visit http://www.autismspeaks.org. Since 1998 close to $6 million has been granted to the Canadian autism research community by Autism Speaks.

For further information: Suzanne Lanthier, Executive Director, Autism Speaks, Cell: (416) 388-3139 or email: slanthier@autismspeaks.org

[Andrew Kavchak]

Debates of the Senate (Hansard)
Tuesday, June 17, 2008

World Autism Awareness Day Bill

Second Reading—Debate Adjourned

Hon. Jim Munson moved second reading of Bill S-237, An Act respecting World Autism Awareness Day.—(Honourable Senator Munson)

He said: Honourable senators, it is late in the evening and all have been patient in listening to serious debates on issues dealing with children and issues dealing with the military. I am determined to deliver my speech on an issue that is very important to me and, I believe, to this country.

Honourable senators, I am proud to present Bill S-237, An Act respecting World Autism Awareness Day. I am also pleased that my Conservative friend, Senator Don Oliver, is supporting this initiative in a major way.

Bill S-237 would make April 2 world autism awareness day, which would bring the attention of all Canadians to the issue of autism, a problem that affects at least one in 165 families in this country. Autism, a neurological disorder that isolates people from the world around them, is on the rise in Canada and affects more children worldwide than paediatric cancer, diabetes and AIDS combined. A generation ago, autism was considered to be a psychiatric response to parents, in particular mothers who were cold or not loving enough.

Thank goodness that nonsense has been dispelled.

Unfortunately, no hard knowledge has been gained. Autism remains a mystery. We do not know what causes it. We do not know how to cure it. We do not know why the number of children affected is growing. We do not have consensus about what constitutes adequate or appropriate treatment, and we do not know how to pay for that treatment.

When it comes to autism, honourable senators, we are in the dark. Families across the country are on their own, struggling to find treatment and struggling to pay for it. Marriages are breaking up. The stress is tremendous. Canadian families with autism have to go it alone.

This became abundantly clear to me and other honourable senators when the Standing Senate Committee on Social Affairs, Science and Technology conducted its inquiry into autism. As you may remember, the Social Affairs Committee studied autism. The title of our report, Pay Now or Pay Later -Autism Families In Crisis, spoke volumes.

Intensive behavioural intervention, one of the treatments that has proven to be effective for many people with autism, is very expensive. It costs from $50,000 to $65,000 a year.

People with autism who receive little or no treatment often require full-time care or institutionalization. In addition to these not inconsiderable costs, there are moral costs; the loss of the potential of a human being. People with autism who get the treatment and support they need can contribute to society. Those who do not receive treatment and support retreat into themselves and some become aggressive and violent.

I have met some extraordinary people in investigating this very sensitive issue. I met young Joshua Bortolotti, as has the Leader of the Government. His little sister has autism. This young man, just in middle school, has circulated petitions, spoken publicly about autism and collected money for the cause. There is nothing that he will not do for his little sister.

Honourable senators, there is just about nothing that I will not do for Josh.

Some Hon. Senators: Hear, hear!

Senator Munson: It is emotional to talk about these children and families.

I also met Stefan Marinoiu who walked all the way from Scarborough to Ottawa this past winter. He did not get headlines for that. He walked from Scarborough to Ottawa just to draw attention to the plight of families with autism. He has a son aged 15 who is no longer eligible for treatment. Stefan said that from birth to age 13 he could handle his son, but now his son has become very aggressive. He is a big man, and he cannot handle him anymore. This man is so desperate that he also went on a hunger strike in front of Queen's Park. He does not know what to do anymore for his son.

I met Andrew Kavchak, a lonely protester with a sandwich board on Parliament Hill who told me about autism and its devastating impact on families.

As I speak tonight, a gentleman by the name of Jonathan Howard is walking across this country. He is not like Terry Fox, to whom we all paid attention. Jonathan Howard started walking a month ago from St. John's and is walking to Victoria. I do not know who is paying attention to Jonathan right now, but he is walking to try not only to create awareness, which we all want to do, but also to secure a national strategy to deal with autism. He may be in New Brunswick or somewhere in Quebec, but he is still walking.

Josh is strong and brave and a fighter; Stefan is brave and a fighter; and Andrew is brave and a fighter. However, for every Josh, Stefan, Andrew and Jonathan, there are countless brothers, sisters and parents who feel alone, who think we do not care. That is why a day like World Autism Awareness Day is important.

Autism is on the rise around the world, and we do not know why. April 2 has been declared by the United Nations as World Autism Awareness Day. There was consensus among 192 countries that there is a need to draw the attention of people around the globe to this neurological disorder that is affecting more and more families.

I remind honourable senators that Canada is a signatory to the United Nations Convention on the Rights of the Child and the United Nations Convention on the Rights of Persons with Disabilities. These international conventions bind us to take action to see that children with disabilities enjoy a full and decent life in conditions that ensure dignity, self-reliance and full participation in their community.

It is clear, honourable senators, that if we want to honour the commitment of these international conventions, we must get to work. Children with autism in Canada do not receive the protection they require, the protection we said we would provide. This is Canada, the country of Tommy Douglas, of health care, of a social safety net that provides security for citizens and a quality of life that is the envy of the world.

We need to recognize autism for the health problem that it is, one that is urgent and demanding of our immediate action. Canada's most vulnerable children are falling through the mesh of our social safety net. Every province has a different approach to treatment and funding. Parents need patience and persistence to understand the intricacies of what they are entitled to, which list to get on and where, and where to ask for help.

Honourable senators, these families have enough on their plate. We need to make it easier and recognize that autism treatment is an essential health service that should be funded through our health care system.

Some Hon. Senators: Hear, hear.

Senator Munson: Honourable senators will remember that the Subcommittee on Population Health traveled to Cuba earlier this year as part of our work. In Cuba we went to a school for children with autism. It was impressive. Everyone can talk about Cuba and say that teachers do not get paid very much, and so on, but this was impressive. There were 21 teachers for 21 children with autism.

I was in that school. One could cry to see them. The teachers were not talking about money; they were just talking about caring. The children in that school came from countries in Central and South America, not only from Cuba. If Cuba, a poor country with so little, can do so much for their children with autism, surely Canada, with a budget surplus, can step up to the plate.

I do not like to play politics, but in our report Pay Now or Pay Later we said something. We asked for a national strategy.

We need help for these children. World Autism Awareness Day that I am asking for is a small thing we can do. It will be an opportunity to raise public awareness of autism and the need for research, early diagnosis, access to treatment, increased training of medical personnel and support for people with autism and their families for as long as they need support.

I remind honourable senators that the Centers for Disease Control and Prevention in the United States have called autism a national public health crisis. It is a crisis. I am fully aware that declaring April 2 as World Autism Awareness Day will not fix things overnight. Families will still struggle with the demanding and difficult task of finding and buying care for their children. Parents will still worry about the future. Parents will still worry about the day when they are gone, about who will care for their children with autism. Nine out of ten children who do not receive treatment for autism are institutionalized. This cost to our society is huge, a tragic loss of potential and a moral travesty.

If these children had cancer, would we not take immediate action? Would we debate whether they deserved chemotherapy, whether we had the responsibility to treat them? Of course, we would not.

Honourable senators, I have learned a few things in my four and a half years here in the Senate. The most important one is that small steps lead to historic journeys. When I walked across Parliament Hill and I met a lonely protester, a public servant with a sandwich-board calling on the government to devote more resources to autism, I had no idea that within a year I would ask the Senate to study autism in depth. I did not know. I had no idea that tonight, after all these debates, which are extremely important — I wish the gallery were full of media — I had no idea that I would be tabling a bill to make April 2, World Autism Awareness Day. It is a simple thing. I think that by declaring April 2, World Autism Awareness Day, we will make an important statement.

I want to salute Senator Oliver for his strong support for this bill. Senator Oliver, I want to say thank you for what you do in Nova Scotia and this country, and I know the families that you work with in Nova Scotia. It is important for where we will take this debate. I have 13 more years here, hopefully, and we will fight for this cause. We will fight for a national program and national leadership. I hope that we will say to people with autism and their families: Yes, you matter; and yes, we care. We will say to all Canadians that autism is a growing problem that affects their community, their schools, their workplace, their neighbourhood, and their country. Declaring April 2, World Autism Awareness Day is one small step in a journey to see that all people with autism and their families have the care and support they need. I hope, honourable senators, that you will support this bill so that we can take that step and walk with Canadians with autism and their families and say, "You are not alone; we are here with you; and together we will make things better."

Hon. Gerald J. Comeau (Deputy Leader of the Government): I must advise honourable senators that the 45-minute period of time normally reserved for the second speaker is reserved for a senator on the government side.

The Hon. the Speaker pro tempore: Senator Keon, do you wish to speak on the bill?

Hon. Wilbert J. Keon: Honourable senators, the hour is late. I will speak briefly. I want to add my support to Senator Munson for everything he has done for this subject. I want to mention again something I have said before in our conversations, and that is the tremendous need for research.

Senator Munson will recall I drew an analogy between autism and AIDS when we first confronted AIDS. There were five patients that I operated on who died mysteriously back in the 1980s, and we had no idea what we were dealing with. Then we heard about AIDS. I was the vice-president of the Medical Research Council at the time, and, indeed, I was acting president for a while when Dr. Ball was sick. We tried to do something to deal with this situation when it hit the horizon. We did not have a single scientist in Canada who knew anything about retroviral research.

We asked for submissions, and the submissions we received were awful. We could not fund any of them because the science was so bad. However, we persisted and recruited into Canada retroviral experts, and now Canada has one of the strongest research bases in the world in retroviral studies. AIDS, while it has not been cured, has been converted to a chronic disease.

When we deal with the unknown, the tendency is always to jump in desperation to try to treat a situation, and that is fine; I have no objection to that at all. However, more important than that is, we make a strong initiative to build appropriate scientific expertise in our country, coupled with America and other countries, to solve this, because we do not have the scientific knowledge we need at this point in time to manage this entity on an intelligent basis.

Everything Senator Munson said is absolutely true. For some reason, in the Western world, autism is growing in leaps and bounds. The interesting thing is that in Cuba, it is not. It is there, but it is not growing at the same rate.

Until we have a research establishment to target this disease, we will not make much progress in its management.

Senator Munson, I encourage you to keep hammering at that, and I can assure you I will support you in any way I can.

Hon. Donald H. Oliver: Honourable senators, I am delighted to rise tonight to add my support to this important initiative undertaken by Senator Munson. For many years now, our colleague has vocalized his concerns for Canadian families coping with autism. Time and time again, he has emphasized the need for a national autism program, a strategy that will ensure our most vulnerable citizens receive the necessary health care and social support that we Canadians value most.

Senator Munson's dedication to the well-being of Canadians with autism inspires us all to lend our voice to this cause. This bill, to recognize April 2 as World Autism Awareness Day, is yet another example of Senator Munson's commitment to raise awareness about autism.

Autism spectrum disorders, ASD, are an important health and social issue in Canada. Approximately one in every 165 Canadian families is affected by ASD. This complex lifelong developmental disability affects individuals regardless of their race, religion, socio-economic status or geography. It has no known cause and no known cure.

Bill S-237 is of particular importance since the number of Canadians diagnosed with ASD has increased by 150 per cent in the last six years. In fact, there are currently 48,000 children and 144,000 adults with autism in Canada right now.

This bill proposes that we join the global effort to focus the world's attention on autism. On World Autism Awareness Day, communities around the world will speak up about autism by coordinating events to acknowledge the daily realities of people living with this condition.

World Autism Awareness Day stems from United Nations Resolution 62/139 which was passed on December 18, 2007. April 2 has become one of only three disease-specific UN days.

This day expresses the UN's deep concern at the prevalence and high rate of autism in children in all regions of the world and the consequent developmental challenges. In fact, more children worldwide are affected by autism than pediatric cancer, diabetes and AIDS combined.

This day will also acknowledge the ongoing struggles and extraordinary talents of the approximately 35 million people living with autism in our international community.

The UN resolution is an active way of encouraging member states like Canada to emphasize the importance of universal human rights and, more specifically, the rights of the disabled.

When speaking on the objectives of World Autism Awareness Day, UN Secretary-General Ban Ki-moon said:

. . . let us dedicate ourselves to enabling the family, the most basic unit of society, to fulfill its role ensuring that persons with disabilities enjoy full human rights with dignity, and flourish as individuals.

Within our Canadian communities, individuals with ASD and their families are longing for our support. Bill S-237 reaffirms the government's commitment to the health and social well-being of all Canadians. Individuals with ASD are equal members of our community, and they need to know that they are not alone.

By increasing autism awareness, World Autism Awareness Day will address social misconceptions associated with autism. It will also discourage the stigmatization and discrimination of autistic individuals. By highlighting their incredible talents and potential, we are working to ensure that all Canadians are respected.

When testifying before the Standing Senate Committee on Social Affairs, Science and Technology, Dr. Jeanette Holden of the Autism Spectrum Disorders Canadian-American Research Consortium emphasized the importance of increasing awareness about Autism Spectrum Disorders. She explained:

We need to appreciate the gifts they have and their ability to be happy. We also have to understand that many of these kids are suffering from medical conditions that are not recognized. They may be acting out or having problems because they are in pain from unrecognized conditions. We must ask what is causing these behaviours. Is it because they just want to be naughty kids and be a nuisance? No. There is a reason. They are either intellectually frustrated or medically compromised. All of these factors must be taken into account.

Autism Awareness Day will sensitize our communities on the difficulties of raising a child with autism. It will create a greater support network for Canadian parents.

As honourable senators can imagine, parenting a child with autism can be quite challenging. It requires great patience, strength and devotion. In fact, research has shown that families of children with autism experience high levels of stress, more than families with other types of disabilities. This stress can sometimes lead to despair, depression and, in the worst cases, suicidal thoughts. These caregivers need our support.

I wish to take a moment to speak about the significant work that is being done in Nova Scotia.

Joan and Jack Craig of Nova Scotia have done tremendous work to support Canadian families in the Atlantic region. They are known for their devotion and dedication to finding answers and increasing our understanding of ASD.

Their vision and generosity led to the establishment of the Joan and Jack Craig Research Chair in Autism at Dalhousie University, which was founded in 2001. It is the first endowed chair in autism research in Canada.

Its chair holder, Dr. Susan Bryson, is recognized internationally as a leading expert on autism and related disorders of development. The chair is working on attention and emotion in children with autism. They are also conducting a groundbreaking, comprehensive, multinational study on infant siblings of children with autism. They are charting the first signs of autism in order to develop modules for frontline physicians to use in their practices.

Jack and Joan Craig have also founded a provincial autism centre in Halifax, Nova Scotia. This professionally-run resource centre is focused on helping parents and professionals access quality education about autism spectrum disorders. The centre welcomes approximately 2,000 people a year, including individuals with autism, their parents and siblings, students, and people interested in learning more about ASD. It is the largest source of information on ASD in Eastern Canada. Its extensive library and resource centre is in high demand, so much so that they can hardly keep the material on the shelves.

The centre provides social activities for teens and young adults with ASD, many of whom have never had social activity with peers before. Weekly events allow individuals to interact and socialize. The centre also focuses on introducing young people with ASD to the community as volunteers. The outcomes of this initiative have been extremely positive since it allows the community to better understand autism while providing individuals on the spectrum with valuable opportunities.

The centre is also increasing awareness in Canadian workplaces and universities. Only 12 per cent of people living with autism are employed, and only 1 per cent of these individuals will find employment in their area of specialty. The centre is working on bridging this gap. By working with teachers and employers, the centre hopes to identify strategies to help create a positive learning environment for individuals with autism.

The centre has had many successes since its 2002 opening. For instance, the young adults in the centre publish their own newsletter called Autism Aloud and they can chat one-on-one on the supervised chat-line.

Thanks to the Craigs' passionate perseverance and dedication to the well-being of all Canadians, I am certain that the centre will have continued success in the future. Their work continues to provide credible information and life-changing opportunities for Canadians in need.

As parents of a 54-year-old with autism, the Craigs understand the challenges and rewards of parenting a child with ASD. Like any parent, parents of a child with ASD want what is best for the child. They question whether their child is receiving the necessary support and whether he or she will be able to live an independent life, yet trying to find and access necessary services, effective treatments and support networks are an ongoing challenge.

Carolyn Bateman, who is the mother of a 24-year-old son with autism and co-founder and past president of the Autism Society of P.E.I., explained to the Standing Senate Committee on Social Affairs, Science and Technology:

Families want older children to be independent and feel self-worth, a sense of belonging and to know that someone cares enough that they will not be sent to an institution or an inappropriate setting when their parents are not around. No human being should be expected to live without that in this country.

This bill acknowledges the challenges that I have just described. It demonstrates that we, as Canadians, care about these individuals. More importantly, it proves that we want to increase dialogue and identify strategies to improve their situation, yet many of us do not know the challenges related to living or caring for an individual with ASD.

Dr. Eric Fombonne, Director of Child Psychiatry at McGill University, explained:

. . . the typical pattern is that parents become aware of problems at age 16 or 18 months on average, and then they must wait. They go to their paediatricians, and there is a waiting time of six to eight months before they are taken seriously. Then they refer the child to us, and they wait in my centre for 12 months at this point in time before they can be seen.

Anne Borbey-Schwartz, a former senior therapist and trainer in Intensive Behaviour Intervention, explained that this waiting period often leads to parents becoming skeptical towards "the system." She said:

. . . through months of waiting and struggling to come to terms with the situation, their trust in the system has faltered.

The Autism Canada Foundation has also reported that, "unfortunately, many paediatricians and other physicians are not experienced in diagnosing autism." They also explain that many health professionals guide parents with a "wait and see" approach or promises that the child will "catch up" one day.

Yet, early diagnosis and early intervention of ASD are keys. During his December 7, 2006 testimony, Dr. Bernand Deslisle, a member of the Franco-Ontarian Autism Society, explained to the Senate committee that:

. . . all the experts agree that autistic children and adolescents are children at risk and thus their needs are commensurately great. It has been proven that the quality of life for autistic children can nonetheless be improved through early diagnosis and treatment, combined with subsequent support from appropriate programs and services.

Yet, Canadians with autism spectrum disorders have unequal access to services across the country and they are required to wait for assistance. This cannot continue.

More worrisome still were the statements to the committee which indicated that "the service system for adults is woefully inadequate. The recognition of the mental health needs of adolescents and adults is very important and often missed and misunderstood." Parents of "adult children" are left with very few health and social support networks and continue caring for their children as they themselves age.

Our own Senate committee "recognized that family caregivers are struggling to provide the best care possible for persons living with autism. Their emotional and financial hardships are very real, and a solution must be found."

Clearly better knowledge about autism is needed for all Canadians who deal with this disorder. This includes parents, siblings, family members, service providers and policy-makers. In advance of any strategic work to address autism, it is essential that governments and stakeholders better understand its causes and optimal interventions.

While services to screen and treat autism remain a provincial/ territorial responsibility, the Government of Canada is committed to supporting the evidence base on this important issue so that future action by provincial and territorial governments, caregivers and families will be well-informed. The government is therefore collaborating with a range of partners to support those with autism and their families through research and knowledge-based activities.

For example, on October 20, 2007, the Government of Canada announced the establishment of the National Chair in Autism Research and Intervention at Simon Fraser University. The chair is jointly funded by the Government of British Columbia, Health Canada and is contributing $1 million over five years on this initiative. Moreover, a web page with links to relevant information on autism has been included on the Health Canada website, and will continue to be enhanced as new developments arise.

The Canadian Institutes for Health Research has also done significant work in autism. From 2000 to 2007, it spent or committed approximately $26.1 million for related research. This research is exploring many relevant issues, including autism's causes, origins, and treatments.

The National Autism Research Symposium, which took place on November 8 and 9 in Toronto, was also a positive development in autism research. Service providers, policy-makers, researchers and people with autism and their families gathered to share knowledge and to support dialogue and to discuss future research priorities.

In addition to activities which support improved knowledge and awareness of autism, the federal government already provided significant transfers to provincial and territorial governments for health care and social programs through the Canada Health Transfer and the Canada Social Transfer respectively. This is good news for Canadians. I am confident that these activities will contribute to greater evidence and awareness of autism, and will enhance Canada's capacity to address this important issue.

Honourable senators, in conclusion, I would like to leave you with the words of Anne Borbey-Schwartz. When testifying before the Senate committee she said, "It takes a community to raise a child." She emphasized that a child with autism deserves no less. I could not agree more.

I would like to thank Senator Munson for calling on us all to recognize the unmet needs of this community. He has lent his voice to this important cause by reminding us that individuals with ASD and their families are in desperate need of our support.

Honourable senators, Senator Munson's bill is our opportunity to send a clear message to all Canadians that individuals with autism are a valuable part of our community. By officially declaring April 2 World Autism Awareness Day, we are giving them a voice. Let us join with other UN member states in declaring April 2 World Autism Awareness Day.

Hon. Marilyn Trenholme Counsell: Honourable senators, I know the hour is very late, but I have to say this: I want to give great praise to my fellow New Brunswicker, Senator Munson, for not only this bill but all of his work on autism. It shows his passion and his compassion.

I also want to say that I applaud Senator Keon for his comments about research because that is really the number-one thing at this time. The World Autism Awareness Day will help, but the research is fundamentally necessary.

I did hear mention made of an autism school in Cuba. I know that Senator Keon will bring to us valuable information in his report on population health based on Cuba, but I want to say this: One of the very last things that Premier Hatfield did — former Senator Hatfield — was to introduce a bill in the Government of New Brunswick that would end segregated schools. He closed the William F. Broadford School and it was left to the government, of which I was a part, to bring in full integration. In the last two years, we have had another study by a learned academic, in which New Brunswickers said yes to full integration.

I will now tell honourable senators a little story. I know a child very well who has autism. Up until a few months ago, he was able to have his lunch with all the children in the school, in the cafeteria. Then, because resources were cut, they said no, there will be a table where children like him will have their lunch. His parents got very upset because he did not eat. He was not eating and he was crying about his lunch and the lunch can was still full when he came home. They looked into the matter and it was because he had been separated with other autism children. They fought a hard battle, and I helped them, and they got that additional teacher assistance back and the child was able to eat in the cafeteria with all the children.

That is the message: Inclusion is so important. The awareness is important and the knowledge that Senator Keon will bring from a country that is doing better probably than we are. Research, yes, but let us always have inclusion. I pay tribute to former Premier Hatfield and former Senator Hatfield for breaking down those barriers and saying yes to inclusion in New Brunswick.

Hon. Terry M. Mercer: In light of the late hour, I will adjourn the debate quickly, except that I do want to associate myself with comments by Senator Munson and Senator Oliver, and also to support the Jack and Joan Craig Foundation in Nova Scotia.

People do not understand how important are these days of recognition. By declaring April 2 World Autism Awareness Day in this country, it brings a focus to a problem that we have been dealing with. It took Senator Cochrane two years to get it done. We drew the attention of this chamber and the entire country to World Blood Donor Week, which was celebrated last week, and it brought a whole new focus to this issue. This is extremely important.

As a former executive director of the kidney foundation and the diabetes association, and some of us worked for the lung association over the years, I understand how these days help focus the public's attention, and how these days focus what we are doing.

I have had the privilege of knowing several families with autistic children. The parents of these children, who must manage the difficulties they experience to raise these children, are some of the most special people in the world. We need the compassion and we need to bring to this debate the compassion that goes beyond this place. We need to carry it out into the community, as Senator Trenholme Counsell has talked about, with her case of the child who was segregated in the cafeteria.

On motion of Senator Mercer, debate adjourned.

[Andrew Kavchak]

Sound familiar?
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House of Commons

Hansard, June 17, 2008.

Statement by Members

Mrs. Susan Kadis (Thornhill, Lib.):

Mr. Speaker, health care is a top priority for Thornhill residents. From packed emergency rooms, to wait times, to locating a family doctor, they expect and deserve better results from the Conservative government.

In 2004 the federal government, provincial health ministers and aboriginal leaders signed a historic 10 year plan to strengthen health care. The plan aimed to improve areas such as catastrophic drug coverage, aboriginal health, primary health and home care.

Yet since 2006 the Conservative government has systematically neglected the accord. It is ideologically opposed to a national health care system, writing a blank cheque with little accountability and few reporting mechanisms to assess progress.

Shockingly, when asked recently about home care, the health minister responded, “We're not going to get involved”.

Health care is a shared responsibility. Canadians deserve a federal government that takes the lead on health care. Instead, we have a government and a minister that fails to act, denies responsibility and will not get involved.

[Author]

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