[Andrew Kavchak]

Hi Folks,

Please check out this article about the lack of autism prevalence figures in Canada.
http://www.vocm.com/newsarticle.asp?mn=2&id=53243&latest=1

It is really a shame that so many years after former Health Minister Clement announced his “five point autism plan” that the federal government, with its “Public Health Agency of Canada”, still has no clue how many Canadians are affected by autism. Without any numbers, it is no surprise that there is no “national strategy”. Of course, the Clement plan (and at the time of the announcement he was quoted in the paper as saying we don’t need a strategy since we have this new plan of his), included a “by invitation only” conference, and a website, etc….

Of course, the plan included a point about “looking into the possibility” of gathering stats…and they even have a blurb about it at the Health Canada website.
http://www.hc-sc.gc.ca/hc-ps/dc-ma/autismsurv-eng.php

And the Public Health Agency of Canada also has a blurb about it.
http://www.phac-aspc.gc.ca/publicat/cdic-mcbc/32-2/ar-04-eng.php

But if the federal government has been looking into it for years, what is the result?
As the latter webpage states:

“Conclusion
Linking administrative datasets is a cost-effective option that could allow us to expand ASD surveillance to more regions of the country. In light of the public health importance of this group of disorders,5 NEDSAC will continue to evolve and to provide information for policy makers, families and advocates on the occurrence of ASD in Canada.”

In other words, after all these years it appears that the federal government is still “looking into it” and really does not really know how many Canadians are affected by autism. Perhaps it is because they are not really interested. After all, as Mike Lake and Stephen Harper and Tony Clement have repeatedly told us….”It’s provincial”. Clearly, not a priority.

By the way, is the Clement Plan website this one…?
http://healthycanadians.gc.ca/diseases-conditions-maladies-affections/disease-maladie/autism-eng.php?_ga=1.150324213.2108981854.1425992833
If so, the lack of any discussion about treatment is…strange.

[Andrew Kavchak]

From the House of Commons, February 2, 2015.

Petitions.

Autism Spectrum Disorders

Ms. Kirsty Duncan (Etobicoke North, Lib.):

Mr. Speaker, I present several petitions regarding autism spectrum disorders, or ASDs, which affect one person in 88. These disorders are characterized by social and communication challenges and a pattern of repetitive behaviours and interests. They are lifelong, affect development and life experience, and exert emotional and financial pressures on families.

The petitioners call on the government to work with the provinces and territories and stakeholders to develop a pan-Canadian strategy for autism spectrum disorder.

[Andrew Kavchak]

From the House of Commons, Thursday, Jan 29, 2015:

Autism
Ms. Kirsty Duncan (Etobicoke North, Lib.):

Mr. Speaker, I rise to celebrate Etobicoke North's extraordinary and unstoppable Dee Gordon, who today completed walking over 500 kilometres to raise awareness for autism spectrum disorder.

While Dee walked, her son Tim drove the support truck, and together this mother-son team collected thousands of signatures to ask the federal government for a pan-Canadian autism strategy.

Dee does not want other Canadian families to have to fight for early diagnosis, affordable treatment programs, and support programs as she has had to fight for her amazing son Jacob. She hopes the government will implement recommendations in the 2007 Senate report called “Pay Now or Pay Later: Autism Families in Crisis”.

Dee's children, Tim, Krystal, and Jacob, are proud of her, as is her Aunt Mary. Our office and our community are proud of her and her tremendous undertaking for Canadian families.

I ask all members to join me in recognizing Dee Gordon and the walk to Ottawa.

And from the Senate on the same day:

Dee Gordon

Hon. Jim Munson: Honourable senators, today is no ordinary day in the Senate. We have a visitor in the chamber, and her name is Dee Gordon. It is my honour to pay tribute to her this afternoon, a courageous mother.

Dee is a remarkable woman whose strength of purpose and character are best conveyed by telling you about the gruelling journey she has completed. Imagine this: Two weeks ago, on January 15, Dee embarked on a walk from Toronto to Ottawa, a trek called Walk to Ottawa. She has done this to raise awareness about autism spectrum disorders and to gather signatures on a petition for a national ASD strategy. We're talking about January for two weeks, Toronto to Ottawa.

Described by one of her friends as a "warrior mom," Dee has three children, one of whom, a young teenager named Jacob, has autism. For 13 years she has struggled to get the care and support he needs. It has been tough, but it certainly has not gotten her down.

Dee has explained the significance of walking to the nation's capital during the coldest winter month we have. She put it this way:

The reason why I picked January is because Jacob's struggle is like ploughing through the snow every single day. It's difficult, it's harsh, you have to plan ahead.

Walk to Ottawa has run like a well-oiled machine, with online updates and encouraging messages posted from all corners.

This is important for us, honourable senators. This is close to home for all of us because we were all in this together, and still are. You will remember our 2007 report Pay Now or Pay Later: Autism Families In Crisis. It has been on her Facebook page. She made this walk for Jacob, but the petition's support is for what we had proposed seven or eight years ago.

The only thing that would make me prouder than witnessing the positive influence of the Senate's report on the autism community is the creation, as the report said, of a national strategy.

We have a mental health strategy and we have the Mental Health Commission. Where did they come from? The idea was right here in the Senate. Why not the same for autism?

With each step Dee Gordon has taken over the last two extremely cold weeks, she has helped bring us closer to that goal. She arrived on the Hill just one hour ago with the plea she has carried with her throughout her journey and will present to the government, on behalf of all us who support the call for strategic federal action, a petition with tens of thousands of names calling for a national autism strategy.

Dee, these few minutes are about you, your very special family and the people who have supported you. I am delighted that your three children are able to join you to hear testimony about your extraordinary determination and commitment to making a difference. You are a very special mom.

This afternoon at Minto Place, honourable senators, there will be a reception. I hope some of you can make it to the Lisgar Salon of Minto Place from 3:30 p.m. to 5:30 p.m.

This part of the story may be over. Dee's walk may be over, but we as senators will not rest because we know we are in this together until this country has a national autism spectrum disorder strategy.

Thank you, honourable senators.

Visitors in the Gallery

The Hon. the Speaker pro tempore: Honourable senators, I wish to draw your attention to the presence of visitors in the gallery. We have with us Ms. Dee Gordon, an Etobicoke resident, an advocate for a national autism strategy who, as we just heard from Senator Munson, has walked from Toronto to Ottawa to raise awareness about autism. Her son Jacob and her family are guests of the Honourable Senator Munson.

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

Hon. Senators: Hear, hear!

[Andrew Kavchak]

From the Toronto Sun:
http://www.torontosun.com/2015/01/24/etobicoke-mom-takes-long-walk-for-autism-awareness

Etobicoke mom takes long walk for autism awareness

BY KEVIN CONNOR, TORONTO SUN

TORONTO – Dee Gordon could no longer stand by and watch her autistic son Jacob live in isolation.

So, the Etobicoke mom laced up her walking shoes and embarked on a trek from her home to Parliament Hill to pressure the government for a national autism strategy for treatment.

“As a mom with a child with autism, I have had to fight every day for real help for my child and I have watched other families fights as hard as I have and this isn’t right,” said Gordon, a single mom.

“We shouldn’t have to fight for early diagnoses and treatment,” she said. “We shouldn’t have to beg for money to pay for treatment for our children and we shouldn’t have to live in poverty to ensure our children’s well-being.”

Autism is a neurological condition that impacts brain development and leaves most people with communication problems and difficulty with social interaction.

Jacob, 14, has been in intense therapy since his early days; as he has grown so have the wait times for services.

“Jacob deserves to have what every other Canadian has,” his mom said as she neared Napanee on Thursday. “He is an amazing kid with so much potential, but he needs supports.”

At school he is in a autistic program, but also attends mainstream classes where he can get into a crisis situation simply spurred by a noise level.

“He acts out in a crisis and it disconnects his brain and he doesn’t know who, what when where. When he can’t handle a situation he needs a team for help. We have to look at a different way to teach our children,” Gordon said.

Jacob has dreams of getting married, having children and owning a house.

“He talks about a lot of things. He is brilliant, but needs somebody to reach into him and pull that out,” Gordon said.

Laurie Mawlam with Autism Canada said establishing a national strategy is imperative and will save money in the long run.

“What we have now is a dog’s breakfast,” Mawlam said. “The services available and the wait times vary depending on where you live because everywhere has a different model of support. (Gordon) is bang on that we need a plan at the federal level.”

When an autistic child is helped in the early, formative, developmental years they will have a better chance to succeed, she explained.

“It’s pay now or pay later. When you intervene at a young age there is more bang for the buck. If you don’•••• doesn’t give an individual the chance to reach their full potential and get meaningful employment,” Mawlam said.

After Gordon’s scheduled arrival in Ottawa on Jan. 29, her petition with more than 1,000 signatures calling for a national strategy will be presented to the House of Commons.

Liberal Etobicoke MP Kristy Duncan presented the idea of a Pan-Canadian autism strategy to Parliament in October.

“It makes me sad to think (Gordon) feels so desperate for all the families (with autistic members) that she is walking to Ottawa,” Duncan said. “These families shouldn’t have to fight so hard for help.”

Gordon’s petition can be found at walktoottawa.org.

[Andrew Kavchak]

This is a letter-to-the-editor that I sent to the Globe and Mail today.

Re: “MPs vote to unanimously to provide ‘full support’ to thalidomide survivors”. While the unanimous vote for support to thalidomide victims is certainly a positive thing to cheer about, here is a reality check: motions are non-binding. After several years of lobbying for a National Autism Strategy, the House of Commons also voted to approve a motion calling for a National Autism Strategy (M-172) in 2006. Many people in the autism community also shed tears of joy and relief at the time. However, with the passage of time those tears turned into tears of sadness with the realization that the politicians were merely going through the motions. Although the federal government has done little to follow up with its commitment to those who counted on help for the autism community, we may hope that the federal government’s approach to these medical crises that devastate the lives of many Canadians will finally change in a meaningful way.

[Andrew Kavchak]

From the Senate Hansard, Tuesday, October 21, 2014.

Autism Awareness Month

Hon. Jim Munson: Honourable senators, October is Autism Awareness Month, presenting us with a great opportunity to learn about and reflect on this disorder and its impact on people's lives.

Though I speak about autism at this time every year and, of course, on April 2, World Autism Awareness Day, I'm not at a loss to say something new. Thanks to the determination of a great many people, the tens of thousands of people who make up Canada's courageous autism community, there is always some groundbreaking, innovative treatment or discovery to highlight. But we have new numbers now. It's amazing; after 10 years, the national rate of autism is now 1 in 68. It is moving to a range of a public health crisis.

In the early years, my messages were about autistic children and those who cared for them. Today those children are adults, and their parents and other family members are older, too.

With the transition of autistic children into adulthood, Canadian society is confronted with a fundamental challenge: dealing effectively with the lifelong needs of autistic people.

During the break week, I spent two days at the Ability Hub in Calgary, Alberta. Funded by the Sinneave Family Foundation, it's an impressive centre providing services for the autism community in Alberta. There are so many good things happening in Alberta and at this Ability Hub, such as the state-of-art software and data services program for autistic adults. It is called Meticulon, and here autistic adults can find meaningful work by being matched with a software company. There's also a community access program that trains and matches adults with companies like London Drugs, Tim Hortons and Safeway.

There's another program, called Launch, which focuses on improving the quality of life and level of independence of adolescents and adults with an autism spectrum disorder.

Some 425 families are utilizing the Ability Hub. They like to talk about promising practices there. I look at the Ability Hub in Calgary and see an opportunity share those practices with the rest of the country. Step by step, we are moving toward the major recommendation in our Senate report, Pay Now or Pay Later, a national autism spectrum disorder strategy.

In many respects, the federal government has taken up the challenge with disability tax credits, job creation initiatives and research chairs, but there is so much more to be done. The key is to bring everyone together and to have everyone working from the same page.

I stand here today thinking of a little five-year-old boy I met last week also in Calgary. His name is Tahir. He was being nurtured at the autism organization called the Society for Treatment of Autism. My goodness, what great work they do! Tahir was with a behavioural intervention therapist in a sensory room, a room that offers a peaceful but stimulating environment. Tahir smiled and held my hand. Sometimes he would joyfully jump up and down, communicating the only way he knows how to. He is non-verbal, but he still speaks to you through his smile and his eyes. Tahir wouldn't even smile two years ago.

My hope during this Autism Awareness Month is that when Tahir reaches adulthood, there will be a real place in society for him to thrive, to work and to love. Step by step, we as politicians have a moral obligation to get him there.

We are all in this together.

[Andrew Kavchak]

From the Hansard of Parliament, Wednesday, October 29, 2014.

Autism Spectrum Disorders

Ms. Kirsty Duncan (Etobicoke North, Lib.):

Mr. Speaker, I am pleased to present this petition with dozens of signatures that were collected by my constituent, Dee Gordon, as she walks twice a week from Etobicoke North to downtown Toronto to raise awareness of autism.

Autism spectrum disorders, ADDS, are pervasive disorders which affect 1 person in 88. They are characterized by social and communication challenges, and a pattern of repetitive behaviours and interests. They are lifelong, affect life experience and exert emotional and financial pressures on families.

The petitioners call upon the government to work with the provinces, territories and stakeholders to develop a pan-Canadian strategy for ASD, including awareness and education campaigns, child, adolescent and adult intervention and innovative funding arrangements for financial therapy, surveillance, respite care, community initiatives and research.

[Andrew Kavchak]

Opinion: Children with autism are hardly a ‘first priority’

BY JOEL YANOFSKY, THE GAZETTE JULY 17, 2014

Excuse me for calling “BS” on a remark attributed to Nadia Caron, a spokesperson for Quebec’s family ministry in the July 16 Gazette article titled “Preschool for autistic children in jeopardy.”
Gazette reporter Monique Muise paraphrases Caron as saying “the first priority must always be the children.”

Parents of children with autism, in particular, know this is hardly the case.

If it were, the government wouldn’t be tolerating such long waiting lists for children with autism, knowing as everyone does that the best way, the only proven way, to treat autism is through early intervention.

The government also wouldn’t exclude autism from being fully covered by our health-care system, since it must be aware that if it did, it wouldn’t just make life easier for countless parents and children; it would save all of us money in the long run.

In other words, the government could, if children really were a “first priority,” endorse the best of both worlds — common sense mixed with compassion.

Unfortunately, though not surprisingly, both these components seem to be missing in the family ministry’s narrow-minded refusal to recognize the good work The Little Red Playhouse in Montreal West is doing, and refusal to cut the “specialized preschool” some well-deserved slack.

My son Jonah is 15 and on the autism spectrum. My wife, Cynthia, and I obtained his first diagnosis privately almost 11 years ago. Even then, knowing very little about how the system works, we were pretty sure the wait for an official diagnosis would end up taking too long. We were right about that. It took nearly two years to get him in to see a doctor at the Montreal Children’s Hospital.

Reading about The Little Red Playhouse, and hearing about it from others like Kristine Barbara, who is quoted in the article and is a Facebook friend, it sounds like it would have been an ideal place to have sent Jonah.

No doubt, we would have tried to do just that, if it had existed then. Of course, it didn’t because the parent running it, Sharon McCarry, the mother of a 10-year-old with autism, had yet to have her life changed by autism.

That she and so many others like her have reacted to this challenging experience by helping her own children and others should be a reason for celebration — not red tape.

I was reluctant to use the abbreviation BS in writing this piece. I know it’s probably not the best way to get what you want to say into a family newspaper. But Cynthia and Jonah and I have dealt with more than our share of red tape — from the health-care system, the school system, social services — and calling it red tape just seems too, well, innocuous. BS, on the other hand, is right on the mark.

On The Daily Show, Jon Stewart used to do a regular bit called BS Mountain. It’s the term he and his writers coined for the proliferation of media and government double-talk. He seemed, once he got rolling on one of his rants, to take an exasperated and perverse glee in saying the bleeped word over and over again, making it clear, along the way, that not only are we being lied to, but we know we’re being lied to.

Joel Yanofsky is the author of the memoir Bad Animals: A Father’s Accidental Education in Autism.
© Copyright (c) The Montreal Gazette

[Andrew Kavchak]

Wow. This is different. The Prime Minister appears to have said the word "autism" today. No indication below of how many $ are involved, but to my knowledge, this is definitely raising the profile….

PM ANNOUNCES RESEARCH PROJECTS FOR AUTISM AND ALZHEIMER PREVENTION

PROJECTS SUPPORTED IN PARTNERSHIP WITH BRAIN CANADA, THE AZRIELI FOUNDATION AND THE CHAGNON FAMILY

Montréal, Quebec
1 May 2014

Introduction

Prime Minister Stephen Harper today announced that our Government will be supporting five new research projects in the areas of Alzheimer prevention and Autism under its Canada Brain Research Fund. He also announced additional federal funding towards the Azrieli Neurodevelopmental Research Program, a key component of the Fund.

Prime Minister Harper was joined by members of the Brain Canada Foundation, the Azrieli Foundation and the Chagnon Family, who are partnering in these initiatives through a public-private partnership funding model.

The research projects aim to discover new treatment and prevention strategies to address Autism Spectrum Disorders, Fragile X syndrome, and Alzheimer disease and related disorders. Researchers at McGillUniversity, the University of Toronto, McMasterUniversity, and the Centre for Addiction and Mental Health will lead the projects. Support is being provided through donations from the Azrieli Foundation and the National Bank, as well as the Chagnon Family and the Canada Brain Research Fund, created by the Government of Canada in 2011.

The new funding announced today will support future research projects with a special focus on Autism Spectrum Disorders and Fragile X syndrome, through the Azrieli Neurodevelopmental Research Program.

The Canada Brain Research Fund provides support to the Brain Canada Foundation, which raises matching funds from private donors and charitable contributions. The Brain Canada Foundation is a registered charity headquartered in Montréal and is the only national non-profit organization devoted to supporting all neuroscience research.

The Azrieli Foundation's mission is to support and operate a range of initiatives in various fields, including scientific and medical research; the promotion of excellence in education and access to education; tolerance and Holocaust education; and the advancement of excellence in architecture and the arts.

The Chagnon Family is committed to supporting innovative research projects to help prevent the onslaught of Alzheimer disease on the Canadian population.

Quick Facts

The Canada Brain Research Fund was launched in 2011 between the Federal Government and the Brain Canada Foundation as a unique new funding partnership to support neuroscience research, resulting in one of the largest single public-private investments in health research in Canadian history.

On December 21, 2012, the Azrieli Foundation and the Chagnon Family joined this partnership with each announcing major donations, which would be matched by the Federal Government. Support for the projects being announced today flows from that investment.

In addition to the funding for the five projects being announced today, the Azrieli Foundation is also announcing an additional investment into the overall fund, which will be matched by the Federal Government.

Brain diseases, disorders and injuries represent one of the leading causes of disability in the Canadian population.

Brain diseases are costly to patients, their families and care givers, communities and the healthcare system.

Quotes

“Millions of Canadians will suffer from neurological illnesses during their lives, impacting their families and their communities. Our Government is using innovative new public-private partnerships to stretch dollars being used to improve the neurological and mental health of Canadians.” – Prime Minister Stephen Harper

“The five neuroscience projects being announced today are only possible due to the generosity of the Azrieli Foundation and the Chagnon family and matching funds from the Government of Canada. These initiatives hold the potential to dramatically improve the lives of those suffering from Alzheimer’s and autism.” – Prime Minister Stephen Harper

– See more at: http://www.pm.gc.ca/eng/news/2014/05/01/pm-announces-research-projects-autism-and-alzheimer-prevention#sthash.oeFIR7WH.dpuf

[Andrew Kavchak]

Hi Folks,

Another tragedy today.

The media is reporting now that another mother of a child with autism in Canada killed her son and then committed suicide.

This is not the first time this has happened. Those who keep tabs on autism issues in the media see such stories from time to time. It is obviously very disturbing.

[Author]

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