[Andrew Kavchak]

Hi Folks,

Three politicians said something about autism in the Senate and House of Commons yesterday…

From the Senate Debates of Wednesday, March 27, 2013:

Visitors in the Gallery

The Hon. the Acting Speaker: Honourable senators, I wish to draw your attention to the presence in the gallery of Ms. Kim Peterson with her son Ryder; and Ms. Heather Rose with her daughter Molly, who are here on the occasion of Autism Awareness Day on the Hill. They are accompanied by supporters and families of children on the autism spectrum. They are the guests of the Honourable Senator Munson.

On behalf of all honourable senators, we welcome you to the Senate of Canada.

Hon. Senators: Hear, hear!

World Autism Awareness Day

Hon. Jim Munson: Honourable senators, I would also like to recognize Suzanne Jacobsen, who is in our gallery. She has single-handedly led an effort here in Ottawa dealing with QuickStart, a program that is very important to all of us and to the autistic children in our city.

Honourable senators, over the past four years I have stood on many occasions to request your support for my private member's bill, An Act respecting World Autism Awareness Day. Next Tuesday, April 2, Canada will for the first time join over 100 countries worldwide in officially celebrating World Autism Awareness Day.

Ten years ago, I began a journey to help improve the lives of people affected by autism. The people I meet by way of my involvement with the autism community are a constant source of learning and motivation.

In the spirit and perspective of our 2007 Senate report, Pay Now or Pay Later: Autism Families in Crisis, we can clearly see the life cycle needs of autism spectrum disorders people. The urgency for people and families is intensifying. A child who was 2 at the time of our report is now 8; a child who was 12 is now an adult, 18. The numbers grow. The need for our leadership and follow-up on the report recommendations is critical.

In Canada, we are just beginning to put together a national surveillance of autism program. Mostly, we still rely on American surveillance findings from the Centers for Disease Control and Prevention to determine Canadian numbers. It is estimated that 1 in 88 Canadian children has an autism spectrum disorder, up from 1 in 110 two years earlier. One in fifty-four boys has ASD.

Our federal government has to take more leadership and responsibility. This is a national issue that cries out for a collective effort of politicians and everyone involved in the autism community.

Though researchers are only now taking initial steps to study autism among First Nations youth, they are already alarmed by what they have uncovered. This issue is a federal responsibility, adding to the push for the Government of Canada to take more action.

While we, as a nation, are always increasing and enhancing services and resources for people with autism, we still have a long, long way to go. For children who are 2 to those entering into adulthood, wait times for diagnosis and treatments are excessively long. An estimated 4,900 Canadian teenagers with autism come of age every year. This number and the implications of growing from a child with autism to an adult with autism are hugely daunting. Once children with autism turn 18, they lose their pediatricians. They lose their eligibility for publicly funded speech and language services and behavioural therapy. At 21, they can no longer attend public school. Only a lucky few live in group homes, attend day programs or even have part-time jobs.

Last October, Parliament passed An Act respecting World Autism Awareness Day, and I am humbled by the respect my colleagues, especially in this chamber, and everyone else on the Hill have paid this simple act to strengthen Canadians' understanding and commitment to helping people with autism. You have contributed to an important milestone and given us a national vehicle for building our capacity to address the autism crisis. On April 2, let us show Canadians living with autism that we respect and admire them and their families and are grateful for their contributions to our society. Let this be an occasion to take stock of what has been accomplished and what we must continue to advocate for. Let us celebrate those progressive Canadian values that guide our efforts.

From the House of Commons Debates for March 27, 2013:

Autism

Hon. Hedy Fry (Vancouver Centre, Lib.):

Mr. Speaker, April 2, 2013, will be the first official World Autism Awareness Day in Canada.

Last October, the House passed Liberal senator Jim Munson's bill to mark the day. In 2007, the United Nations declared April 2 as World Autism Awareness Day in order to bring world attention to autism, which affects tens of millions globally.

Persons with autism have told me of the discrimination they face in society. Many of them function well but are often misunderstood. We must understand the nature of autism in its full spectrum. Those with autism always find it difficult to get jobs. They are seen as mentally challenged, when many of them have extraordinarily high IQs.

Awareness and understanding are key to providing the necessary supports that persons with autism need, so they can, wherever possible, function autonomously in society.

Today will be “Light It Up Blue” when landmarks will be lit up in blue, just as BC Place, Rogers Arena and Science World were last year in Vancouver Centre.

Here is to removing the stigma of autism.

World Autism Awareness Day

Hon. Mike Lake (Edmonton—Mill Woods—Beaumont, CPC):

Mr. Speaker, April 2 is World Autism Awareness Day and 15 years since my son Jaden was diagnosed. As I have shared many times here, life with autism really is an adventure, unique for every family living with it.

Our world today is one in which our 13-year-old daughter babysits our 17-year-old son, a world in which I often discover my iPad YouTube viewing history filled with Barney episodes and home video clips of airplane takeoffs and landings posted by random strangers from around the globe, a world in which visitors to our home experience odd and memorable moments, like the dinner this past summer when Jaden suddenly decided to guzzle Italian salad dressing straight from the bottle.

From time to time, when I tell someone Jaden has autism, they will mention Rain Man and ask if he has some kind of special power. The answer, of course, is yes. No matter what someone's mood is, he can bring a moment of complete joy without uttering a single word.

I have even seen him bring members from all sides of this crazy place together on occasion, and I cannot think of a more special power than that.

[Andrew Kavchak]

Hi Folks,

Well, some days I really get the impression we live in an Orwellian world where the meaning of things are inverted and rational thinking becomes impossible for the masses.

Below is a clip from a radio station website about the autism awareness event on the Hill. How can it be that an MP who was so opposed to a Senator's Bill on autism awareness because, among other things, it reflected the then prevalence rate, is now considered to be deserving of credit for his leadership?

And what has he done? Note the reference to everyone else and "top notch" organizations doing things….and what can the feds do? Support research. Yes, of course. That's great. But what about "Medicare for Autism Here and Now!"? Where is that national leadership for a National Autism Strategy that would ensure access to medically-necessary autism treatment pursuant to national standards so that people don't become "autism refugees" as they migrate somewhere else for treatment?

Of course, "That's provincial". Right. Please see my earlier post about the federal notice that they will create a national securities regulator regardless of provincial opposition to the incursion in their jurisdiction. Funny how national standards for the filling of stock prospectuses is more important than national standards for access to, and provision of, autism treatment.

But it is heartwarming to know that Mr. Lake brings his son to Parliament Hill for such events and that he gets all the support that he needs from members of all the parties, including "high fives" all over the place. Now if we could just get that support for every other Canadian with autism…

From:
http://www.cfra.com/?cat=1&nid=90624

World Autism Day to be marked in Canada

Sarah Anderson
Wednesday, March 27, 2013

Next week Canada is officially marking World Autism Day on April 2 and Wednesday on Parliament Hill more than 100 people gathered to spread awareness and understanding of the disorder affecting 1 in 88 children.

Rally organizers credit MP Mike Lake with leading the efforts to officially mark World Autism Day but he explained it's been a multi-party effort, with collaborators within the NDP and Liberal parties as well as his own, the Conservatives.

"One of the real blessings actually of my time here in seven years now in parliament is really how colleagues from all parties have come together in support of Jaden and I really do feel like Jaden's just a part of the family for everybody here, he walks around he gives everybody high fives and it's a big deal to us that we have than environment for him," said Lake of his 17 year-old-son who is on the autism spectrum.

Lake says it's crucial the government continue to support research as groups across the country vie for a national treatment strategy.

"We have some absolutely top-notch organizations across this country working on really, really big issues throughout the lifespan: what happens with treatment when our kids are young, what kind of vocational opportunities there's going to be, what kind of housing opportunities there are going to be when we're gone and our kids are senior citizens," Lake said.

He said those are the things that people across this country are focused on including experts and politicians.

[Andrew Kavchak]

Hi Folks,

Well, yesterday was "Budget Day" here in Ottawa and as the dust settles, one thing caught my eye. Historically, many federal politicians, including Mike Lake, have suggested that the Medicare for Autism Now! issue is entirely a provincial matter, and the most the feds can do is set up an autism website, fund a chair somewhere, etc.

This is of course nonsense, as the Canada Health Act is a federal statute and the feds have negotiated plenty of "health accords" with the provinces, etc.

However, it is most interesting to see politicians squirm and snake their way through various issues and claim that "this is different", when they actually latch onto a cause that is dear to their hearts. For example, the Tories wish to create a national securities regulator and despite the opposition from a number of provinces and the hurdles presented by the Supreme Court of Canada, the feds keep beating the drum and delivered notice yesterday that they won't wait around on the topic. In other words, where there's a will, there's a way. All we are lacking in Ottawa is leadership and champions who are dedicated to the cause. See below…

From:
http://ca.finance.yahoo.com/news/ottawa-seeks-co-operation-prepared-alone-securities-regulator-233804671.html

Ottawa seeks co-operation, but prepared to go it alone on securities regulator

By The Canadian Press

OTTAWA – Finance Minister Jim Flaherty is sending out a notice that he is prepared to go it alone on establishing a national securities regulator if provinces won't agree.

The declaration is contained in a two-page notice in the 2013 budget, informing the provinces that Ottawa still seeks a co-operative approach with the provinces, but it won't wait forever.

"If a timely agreement cannot be reached on a common regulator, the government will propose legislation to carry out its regulatory responsibilities consistent with the decision rendered by the Supreme Court of Canada," the budget states.

The last time Ottawa tried to move ahead with a national regulator, several provinces led by Quebec and Alberta fought to stop it from intruding in provincial authority.

The Supreme Court agreed with the provinces, but left Flaherty an opening by ruling that Ottawa has a role in matters of national importance and scope, including preventing systemic risks in the financial system.

In the budget statement, the government said it was prepared to delegate the administration of its own securities legislation to a national regulator "if a critical mass of provinces and territories were willing to do the same."

But if an "timely agreement" cannot be reached, it would go ahead with legislation dealing with its areas of jurisdiction as defined by the court.
"This will include the capacity to monitor, prevent and respond to systemic risks emerging from capital markets," it said.

"A federal capital markets regulatory framework would be applied consistently on a national basis and would not displace provincial securities commissions, which would still manage the day-to-day regulation of securities activities."

It gives no time limit for an agreement, but in the meantime it is extending the mandate of the Canadian Securities Transition Office to work on the project.

Flaherty has been trying to establish a national regulator almost from the first day he became finance minister, only to be frustrated at every turn by provincial objections and most recently by the courts.

He has pointed out that Canada is the only major industrialized country without a single regulator, increasing costs to businesses seeking to raise money in Canada and making enforcement and prosecution of fraud more difficult.

[Andrew Kavchak]

Hi Folks,

This is an interesting article that raises some serious issues that many of us can relate to (or may in due course)…

http://www.thestar.com/news/gta/2013/03/20/family_seeks_crisis_centre_for_autistic_teens.html

[Andrew Kavchak]

Hi Folks,

OK, so the latest U.S. Government survey says…1 in 50.

http://www.ctvnews.ca/health/u-s-estimates-autism-now-being-diagnosed-in-1-in-50-kids-1.1203041

[Andrew Kavchak]

Hi Folks,

As you know, World Autism Awareness Day is coming up. And Canada has a law, Senator Munson's Bill, that recently made the declaration about it being officially Autism Awareness Day in Canada.

So what does the autism community in Ottawa do? Instead of rallying on the hill with big signs that say "Medicare for Autism Now!" (as we did on several occasions, including the anniversary of the SCC Auton decision several years ago), it seems that something like a stamp collection is being organized, and Mike Lake, one of the historic opponents to Senator Munson's bill on autism awareness, is being given the keynote speaker role along with being characterized as a "champion".

I got this notice (below) by email today. It is a strange twist that the CEO of the local children's hospital would be there. The story is complicated, but my understanding is that in Ontario, the autism treatment program is not covered by Medicare and the department of health, but by another Ministry (they change their name from time to time, but something like "Community services", etc.). That department contracts out the service of ABA provision to regional providers. In Eastern Ontario, the regional provider happens to be the local children's hospital. However, the provision of the treatment is not covered by Medicare, and there are endless waiting lists (I believe that the historic average in Ontario has been over 1,200 for the past decade) and although they claim there is no age cut-off, my family and others know that there certainly is, as they use various techniques to kick kids out of the program.

Ironically, the Canada Health Act and public health insurance coverage for healthcare is supposed to apply to services provided by doctors and hospitals. Even though the local children's hospital is clearly demonstrating that they can provide the medical service (notwithstanding the ages it takes for a diagnosis, the subsequent years it can take to get off the waiting list for treatment, and then the premature ejection from the program, the problems with service standards, etc.), the authorities do not appear to have any interest in extending Medicare coverage to autism treatment.

I was previously happy that Senator Munson's bill was approved because I saw it as a stepping stone and opportunity to put on more pressure and lobby for meaningful action and change. However, the locals appear to be content with letting the champions of the status quo do the talking.

_______________________

Autism on the Hill
World Autism Awareness Day
Wednesday, March 27th, 2013 – Noon to 12:45pm
Parliament Hill

With the signing into law of Senator Jim Munson’s Bill S-206 An Act Respecting World Autism Awareness Day, you are invited to join us on Parliament Hill for an event highlighting this year’s World Autism Awareness Day.

This inaugural public event promotes both awareness of autism and the coming together of community, individuals and government required to make life better for people and families affected by autism. We share the same goal!

Autism ribbons will be handed out at noon. The event will take place from 12:15 to 12:45.

We are honoured to have as our keynote speakers Mr. Mike Lake, MP, and Mr. Alex Munter, CEO of the Children’s Hospital of Eastern Ontario. Senator Jim Munson and Mr. Glenn Thibeault, MP will be standing alongside Mr. Mike Lake, as they are all champions of people with autism and their families.

Please join us to show that by working together we can achieve a better life for people and families affected by autism.

Our banner will feature “The Faces of Autism”, a collection of photos of Canadians on the spectrum. Let’s fill the banner! Please send in your photos to AutismOnTheHill@gmail.com. Follow us on Twitter: @AutismOntheHill #AutismOnTheHill

Autism is a neurological disorder with a rapidly increasing prevalence, currently affecting 1 in 88 children. (CDC)

[Andrew Kavchak]

Hi Folks,

And in the "What will they think of next?" category, we now have the use of medicinal marijuana on children with autism…

http://www.foxnews.com/health/2013/01/25/parents-treat-severely-autistic-child-with-medical-marijuana/?test=latestnews

[Andrew Kavchak]

Hi Folks,

http://www.cbc.ca/news/canada/british-columbia/story/2013/01/11/bc-autismdelays.html

I thought I was reading an article about this end of the country, but then I realized it was about things at your end, and then I realized it's all the same. Wait, wait, excuses, excuses, etc.

Two and a half years…would that be the national average perhaps?

Andrew Kavchak (Ottawa)

[Andrew Kavchak]

Hi Folks,

From the opinon section of The Toronto Star's website: thestar.com
Published on Sunday November 11, 2012

How Canada is starting to tackle the autism crisis

By Senator Jim Munson

It’s almost 10 years since my eyes were first opened to autism and its daunting human and social implications. As I walked up to Parliament Hill one morning, I ran into a man peacefully protesting in front of the Centennial Flame. He and his wife had the heavy burden of caring for an autistic child, a son who could not even make eye contact with them. The boy was isolated as a result of his symptoms, and so too were they. The emotional and financial weight was too much.

The desperation that prompted him to make a protest sign and then stand on Parliament Hill that day was a kind of desperation I had never seen before. The intensity was etched in his eyes. He was hurting.

But he was also forthcoming and candid. And he certainly made his point with at least one person he met that morning.

I decided then and there that I had to learn more about autism and how, as a parliamentarian, I could make a positive difference in the lives of the many Canadians living with it.

I eventually found allies, but it wasn’t easy to find senators and MPs who understood autism and the crisis it had become. There are so many issues parliamentarians must grapple with and this was another one. Besides, most thought it was a provincial issue. But with a little perseverance, I launched an inquiry in the Senate.

The idea of getting a grasp of autism issues caught on. The Senate standing committee on social affairs, science and technology undertook a comprehensive study on autism funding, and in 2007 released its final report. The title, Pay Now or Pay Later: Autism Families in Crisis, intimated the core finding that “governments must pay now for autism therapy, services and supports in order to obtain the greatest return on investment. Otherwise, they will pay later in terms of much higher costs in future years for welfare, social services and institutional care.”

The report presented a series of hard-hitting recommendations for addressing the autism crisis: Stable funding for therapy throughout the country. A nation-wide public awareness campaign. Research programs. A knowledge exchange centre.

Among them, our call for a comprehensive national autism spectrum disorder (ASD) strategy stirred the most compelling and enduring debate. The autism community continues to this day to advocate that a national strategy is the only moral and effective response to the autism crisis.

I am often asked, “Do you think the government will ever commit to a national strategy?” My answer is yes. In fact, we have been progressing toward this for many years.

Despite a paltry initial response to Pay Now or Pay Later’s recommendations, the government has in recent years introduced meaningful programs and measures: Financial savings vehicles for parents of children with disabilities. Funding for the Canadian Institutes of Health Research to build on autism-related research. The creation within the Public Health Agency of Canada of a national surveillance system.

It’s a start.

In the absence of a national strategy, other levels of government and non-governmental groups have been filling in the gaps. Across Canada, grassroots organizations are delivering necessary but otherwise unavailable services — from referrals to co-ordination of early diagnosis and treatment.

Five years ago, in the same year Pay Now or Pay Later issued its call for a national strategy, the estimated rate of Canadian children being diagnosed with autism was one in 150. Today, it’s one in 88 — and will continue to rise.

October was Autism Awareness Month and many of us have lately been giving extra thought to autism. Awareness-building activities have been taking place in schools, community centres and other places where we gather and learn.

Reflecting on what I have learned from the autism community over the past decade, I am especially hopeful. Even the humblest of efforts, like the protest of one man on the Hill, can lead to significant outcomes. The improvements we want to see in the lives of people touched by autism might not come as quickly or in precisely the forms we would expect, but we are making inroads. The system we are constantly enhancing to address the autism crisis is reaching the doors of our federal government. These doors must open wider to bring all stakeholders into the same room to build a national ASD strategy.

Senator Jim Munson, a Liberal, is a long-time advocate for autism issues. In October his private member’s bill, S-206, An Act Respecting World Autism Awareness Day, passed clause-by-clause consideration by the House of Commons standing committee on health and will soon become law.

[Andrew Kavchak]

Harper Government announces new research chair dedicated to autism treatment and care
Innovative research program to focus on mental health challenges facing Canadians with autism spectrum disorders

TORONTO, Nov. 5, 2012 /CNW/ – On behalf of the Honourable Leona Aglukkaq, Minister of Health, Parliamentary Secretary Dr. Colin Carrie, today announced a new research chair whose work will aim to improve the treatment and care of Canadians with autism spectrum disorders (ASD) throughout their lives. PS Carrie was joined by Mike Lake, Member of Parliament for Edmonton – Mill Woods – Beaumont. The chair is funded by the Harper Government in partnership with Autism Speaks Canada, the Canadian Autism Spectrum Disorders Alliance, NeuroDevNet, and the Sinneave Family Foundation.

"Our Government is committed to helping Canadians maintain and improve their health." said PS Carrie. "That's why we are supporting research that will use innovative approaches to improve the health of Canadians who live with autism."

"Our Government understands the importance of working with organizations in the autism community and the role of the new research chair," added MP Lake. "These organizations provide a valuable link to Canadians affected by ASD and their families and they will be critically important to the success of the research program and implementation of the results."

Dr. Jonathan Weiss at York University is the recipient of the new Chair in Autism Spectrum Disorders (ASD) Treatment and Care Research Program. He and his team will examine why people with ASD are prone to develop mental health problems, evaluate novel treatment strategies to help youth and adults with ASD deal with these issues, as well as other stressful events like bullying, and find ways to improve access to care for all. To achieve these goals, they will work with people with autism, families, service providers, and government to share cutting edge research that will inform mental health care policy and practice across the country.

"The majority of people with autism will experience mental health problems at some point in their lives. Good mental health translates into better outcomes for these individuals and for their families, and to a reduced demand on our health and social systems, which benefits all Canadians," said Dr. Weiss. "Thanks to the support from CIHR and its partners, we look forward to conducting research that addresses this need."

"Individuals with ASD transitioning from the protection of the family and pediatric health and educational services face a huge gap in the continuum of care, and access to meaningful supports," says Dr. Dan Goldowitz, Scientific Director of NeuroDevNet. "NeuroDevNet is delighted to partner in supporting the work of Dr. Weiss because his research addresses these fundamental issues in a thoughtful and applied manner."

The Harper Government and its partners have committed $1M over five years to support the Chair. York University has also committed matching funds to the research chair announced today, along with its community partner, the Spectrum of Hope Autism Foundation. CIHR encourages institutions to collaborate in the support of the best health research in Canada.

"On behalf of York University, I would like to congratulate Dr. Weiss on being named the recipient of the new Chair in Autism Spectrum Disorders Treatment and Care Research Program," said Mamdouh Shoukri, President and Vice-Chancellor. "York's Faculty of Health is home to some of Canada's leading researchers, who work collaboratively to improve health promotion, disease prevention and health care in the community. I am proud of their commitment to bettering the health of the nation."

The Canadian Institutes of Health Research (CIHR) is the Government of Canada's health research investment agency. CIHR's mission is to create new scientific knowledge and to enable its translation into improved health, more effective health services and products, and a strengthened Canadian health care system. Composed of 13 Institutes, CIHR provides leadership and support to more than 14,100 health researchers and trainees across Canada.

Fact Sheet

Autism spectrum disorders
Autism spectrum disorders (ASD) are a group of developmental brain disorders with a wide range of symptoms, skills, and levels of impairment, or disability. A study by the National Epidemiological Database for the Study of Autism in Canada has found prevalence rates of 1 in 200 people to 1 in 300 people across Canada. There is a general agreement that the incidence of ASD is on the rise, but it remains undetermined if this increase is due solely to better diagnosis or other factors.

All children diagnosed with ASD demonstrate deficits in social interaction and verbal and nonverbal communication, as well as display repetitive behaviors or interests. In addition, they will often have unusual responses to sensory experiences such as certain sounds or the way objects appear to them.

While there is no demonstrated single best treatment regime package for all children with ASD, it appears that they respond well to highly structured, specialized programs. It is generally agreed that early intervention is important.

New chair in ASD treatment and care research
The Harper Government is partnering with organizations in the autism community to fund a new Chair in Autism Spectrum Disorders Treatment and Care Research with the aim of improving the lives of Canadian children and adults with ASD and their families.

Project description
Dr. Jonathan Weiss, a researcher and assistant professor at York University, is the recipient of the new Chair in ASD. He and his team will study innovative approaches to expand treatment and care research to address mental health problems in Canadians with autism across the lifespan. They will examine why people with ASD are prone to develop mental health problems, evaluate novel treatment strategies to help youth and young adults with ASD deal with these issues, as well as other stressful events like bullying, and find ways to improve access to care for all. To achieve these goals, they will work with people with autism, families, services providers, and government to share cutting edge research that informs mental health care policy and practice across the country. This collaborative research will also have a lasting impact by fostering the next generation of Canadian autism researchers and clinicians.

Funding
The Harper Government and its partners have committed $1M over five years to support the Chair.

York University has also committed matching funds to the research announced today, along with its community partner, the Spectrum of Hope Autism Foundation. CIHR encourages institutions to collaborate in the support of the best health research in Canada.

Partners
Government of Canada:

Canadian Institutes of Health Research
Health Canada
NeuroDevNet
Partners from the Autism Community:

Autism Speaks Canada
Canadian Autism Spectrum Disorders Alliance
Sinneave Family Foundation
SOURCE: Canadian Institutes of Health Research

For further information:
Cailin Rodgers, Office of the Honourable Leona Aglukkaq, 613-957-0200
David Coulombe, Canadian Institutes of Health Research, 613-941-4563

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