[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.

[Andrew Kavchak]

News Alert! Cabinet shuffle in the works…?

Will the Health Minister ("considered a solid performer in his current file") move to another portfolio? Who will be the next Health Minister? And what will they know about autism? What impact will this have on the "Medicare for AUTISM Now!" movement and election strategy?

From CTV.ca:

Major cabinet shuffle expected in coming weeks
Updated Tue. May. 27 2008

CTV.ca News Staff

Prime Minister Stephen Harper is planning a wide-ranging cabinet shuffle that is expected to see Finance Minister Jim Flaherty switch places with Industry Minister Jim Prentice, senior insiders tell CTV News.

The shuffle is expected to take place in late June or early July, and follows the sudden resignation of Maxime Bernier as the foreign affairs minister.

Sources say Flaherty wants to expand Industry Canada. That would allow Prentice, the unofficial deputy prime minister, to take over Flaherty's portfolio.

Secretary of State Helena Guergis is expected to be dropped because she's blamed for mishandling the Brenda Martin case. Martin spent two years in a Mexican prison and critics accused the government of doing little to bring her home, although she was eventually found guilty in an Internet fraud scheme.

Treasury Board President Vic Toews is expected to leave his post because of personal reasons, although he's in line for a federal judgeship.

Harper will likely announce that David Emerson will stay on as foreign affairs minister – the former Liberal MP took over the position after Bernier stepped down, and he already runs a special committee on Afghanistan.

That would open Emerson's other position as minister of trade. Sources say there are two possible candidates for the portfolio: either Health Minister Tony Clement, who is considered a solid performer in his current file, or Immigration Minister Diane Finley, who successfully oversaw the recent immigration bill.

Three backbench MPs will likely be promoted to cabinet: British Columbia MP James Moore, Nova Scotia MP Gerald Keddy, and Manitoba MP Rod Bruinooge.

Bernier was forced to resign after he left classified government documents in the home of his former girlfriend Julie Couillard, who has had personal connections with people involved in the biker underworld.

Prime Minister Stephen Harper, currently on a three-day tour of Europe, told reporters that Bernier made a crucial mistake.

"You obviously don't disclose classified materials and you certainly take adequate care to ensure that they are not disclosed and they are not left behind somewhere," he said.

With a report by CTV's Ottawa Bureau Chief Robert Fife

[Andrew Kavchak]

Hi Folks,

Ever wonder whether the federal government's cabinet and the government caucus coordinate their thinking and communication lines (oops! I mean propaganda lines) to the public? Sometimes their messages are so contradictory it would make you laugh if the issues were not so serious.

Just over a week ago Mike Lake, the Edmonton MP who has an autistic son, was on the W5 television program stating that the federal government could not force the provinces to provide autism treatment in Medicare on the basis that the feds are not "above" the provinces and that they are "equal partners in confederation". Any discussion of taking a leadership role in the circumstances and even calling a conference with the provinces on the issue was a non-starter. The most we can expect from the Health Minister is a website and things like that.

But this government is pretty good at cherry-picking its priorities and initiatives. Just like the way the former Liberal government and Prime Minister Paul Martin stated that "you can't pick and chose" which Charter rights you defend as his explanation for his (and Justice Minister Irwin Cotler's) stand in promoting the legalization of same-sex marriages under the equality provisions, while at the same time contradicting themselves by sending a platoon of government lawyers to defeat the Auton case at the Supreme Court of Canada, since the last budget the current Finance Minister has been plugging away at creating a national securities regulator.

This idea of a national securities regulator has been bouncing around for years, but it is a matter of provincial jurisdiction and the provinces have consistently opposed the idea of a national regulator. Just this morning again on national news television there was more discussion of what next steps Minister Flaherty will pursue to further his objective.

But he better watch out!!! Mike Lake might thwart his initiatives and bring down his political career by reminding him in private and humiliating him in public by pointing out that….the feds are not "above" the provinces and that the two levels of government are "partners in confederation" and the feds have no business demonstrating leadership in areas that are not of their exclusive jurisdiction, etc… Or will he?

That would be the consistent thing to do of course. Chances are he won't. Getting a national securities regulator is critical of course. Getting autism treatment…well…that jurisdiction thing gets in the way again.

Like Jean Lewis said time and time again…it's just a matter of political will. Up to now, there has not been any for our kids.

[Andrew Kavchak]

Hi Folks,

As the letter writer below reminds us, over a year and a half ago the House of Commons voted on and passed a Motion to create a National Autism Strategy.
In fact, the original Motion has tabled by Andy Scott (the former Liberal Cabinet Minister) was amended by the Conservatives in November 2006 (with some work behind the scenes being done by autism parent and Conservative MP Mike Lake). The two texts are below. The final version was voted on and passed on December 5, 2006 with the entire Bloc voting against it (to their shame).

Regrettably, Motions are not law or binding and the feds are still not making any contribution or taking any action that can be said to directly or indirectly help our kids get access to treatment. Our community presented Mr. Scott with an engraved gift to thank him for his efforts immediately after the vote. Mike Lake showed up at the reception and claimed to have made contributions to the Motion being passed (which appear to involve watering down the original text). Perhaps Mike Lake could now respond to the letter writer's concerns and explain what the government has done to implement the Motion?

Original motion table by Andy Scott:

Motion no. 172

M-172 That, in the opinion of the House, the government should create a national strategy for autism spectrum disorder that would include:

(a) the establishment, in cooperation with provincial governments, of national standards for the treatment of autism spectrum disorder and the delivery of related services;

(b) the study, in cooperation with provincial governments, of the funding arrangements for the care of those with autism spectrum disorder, including the possibility of transferring federal funds to assist provincial governments to provide no-cost treatment, education, professional training and other required supports for Canadians with autism spectrum disorder without unreasonable wait times;

(c) the creation of a national surveillance program for autism spectrum disorder to be managed by the Public Health Agency of Canada; and

(d) the provision of funding for health research into treatments for autism spectrum disorder.

Motion as amended November 27, 2006:

That, in the opinion of the House, the government should create a national strategy for autism spectrum disorder that would include:

(a) the development, in cooperation with provincial/territorial governments, of evidence based standards for the diagnosis and treatment of autism spectrum disorder;

(b) development, in cooperation with provincial governments, of innovative funding methods for the care of those with autism spectrum disorder;

(c) consulting with provincial/territorial governments and other stakeholders on the requirements of implementing a national surveillance program for autism spectrum disorders; and

(d) the provision of additional federal funding for health research into autism spectrum disorder.
_______________________________
NEW BRUNSWICK TELEGRAPH-JOURNAL
Saturday, May 24, 2008

Letters to the editor

Parties urged to take autism stand

Over a year and a half ago, the House passed a motion for the creation of a National Autism Strategy.

As a parent of a child with autism I wonder what will happen when my wife and I are gone.

As a member of the Forces, I wonder why, should a member get posted, there is not the same level of treatment, service and support coast-to-coast.

As a voter I wonder when a party will take a public stand on autism and move forward the issues facing individuals, families and society.

BRIAN RIMPILAINEN
Fredericton
___________________

[Andrew Kavchak]

Recently the government of Ontario indicated that they would cover the expenses of sex-change operations under Medicare (in Ontario called O.H.I.P.)…which prompted this letter below from a local parent who was also in the recent W5 documentary on the lack of coverage in Medicare for autism treatment coverage. Also below is is an update on Mr. Marinoiu's hunger strike.
_________________

Friday, May 23, 2008

THE OTTAWA CITIZEN

And autism, too

Robert J. Shalka

Health Minister George Smitherman and Premier Dalton McGuinty are to be praised for their progressive and humane decision to restore OHIP coverage for sex-change operations. Gender-identity disorder is a serious medical condition and, although very expensive, its treatment is called "appropriate."

As the parent of a child with autism whose medically-necessary treatment is not covered by OHIP, I hope that the McGuinty government's wise and humane approach points the way to changes in the way Ontario deals with autism. Persons with autism also must deal with a serious medical condition and their needs for treatment must also be covered by OHIP. I hope that Mr. Smitherman will have good news for the autism community in the near future.

Robert J. Shalka,
Orléans
_________________________

Friday, May 23, 2008

THE TORONTO SUN

Dad ends 15-day hunger strike

ANTONELLA ARTUSO, QUEEN'S PARK BUREAU CHIEF

A Toronto father who went on a hunger strike to draw attention to the lack of services for his autistic son has called off the protest.

Stefan Marinoiu went 15 days without solid food before ending the strike Monday night amid fears his health was failing.

Reached at his home yesterday, Marinoiu said he received a letter from Children and Youth Services Minister Deb Matthews assuring him that she's aware that more needs to be done for autistic children and their families.

Matthews called for a national autism strategy and promised that she was working on providing his son with the services that he requires.
"It gives me lots of hope," Marinoiu said.

His son Simon spent many years on a waiting list for intensive behavioural intervention (IBI) without receiving the service.

Now 15, Simon is large and difficult to control physically.

Marinoiu, who is the only one in his family large enough to handle Simon, said he was warned by his doctor that extending the strike could damage his health permanently.

"I realize there's no point in going on," he said. "You can easily get into irreversible internal organ damage."

[Andrew Kavchak]

Just what the world need! Another task force to hold consultation regarding a mental health strategy. The feds went through this exercise for several years and issued numerous reports (remember the one that said that there was doubt as to whether autism should even be covered and that it necessitated a separate study?).

New Brunswick is the province with the high profile case a few years ago of an autistic teenager who was getting physically aggressive and the province was deporting him (a Canadian!) to a facility in Maine. However, while waiting for deportation out of the country, he was being held on the grounds of a New Brunswick prison. What a disgraceful situation! It prompted one Edmonton area Conservative MP, Peter Goldring, to attend one of our rallies on Parliament Hill and issue a press release saying that Canadians with autism should not be treated this way and the feds should do something…but that was BEFORE the Tories became the government and got their hands on the levers of power. It reminded me of the Randy Kamp situation. He issued a press release when he was in opposition calling on Liberal Health Minister Dosanjh to develop a National Autism Strategy. Then we he became a Cabinet Minister (was it the junior Minister for fish or something like that?), he responded to one of my messages by saying: "you know Andrew, it is provincial". I have a copy of the press release he issued but I could not find it anymore on his website the last time I looked.

Anyways, at least now in New Brunswick there is a Task Force and a report (oh boy! This will surely be good reading) is due in early 2009. After that, who knows? Perhaps a committee to review the recommendations of the Task Force? I'm sorry, the cynicism of politicians is contagious… In the meantime, the feds created a National Health Commission a few months ago and appointed the former federal committee chair, who recommended the creation of the Commission, to be the new boss of the Commission. Any news on whether they figured out whether Commission's agitation will extend to cover autism? Stay tuned for possible further consultations!
____________________________

From CBC.ca

Consultations begin on new mental health strategy

Last Updated: Thursday, May 22, 2008

The provincial government is going to consult New Brunswickers on a new mental health strategy.

Health Minister Mike Murphy said Wednesday he has appointed provincial court Judge Mike McKee to head the task force.

McKee will spend the summer and fall talking to mental health professionals, patients and other groups. Existing provincial and national reports on mental health issues will also be reviewed.

The consultations will help develop a new mental health strategy so services are better able to meet the needs of residents, Murphy said.

Currently, mental health patients too often end up in the criminal justice system, Murphy said.

"The difficulty is that our jails in New Brunswick have become pseudo-mental health facilities and that's not right," Murphy said.

McKee will deliver his report by February 2009.

[Author]

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