[FEAT BC Admin]

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

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

 

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

-Hi everyone!

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

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

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

Sabrina

 

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

1. Establish a Paper Trail

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

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

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

Why?

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

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

2. Submit all Requests in Writing

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

3. Set Deadlines for Action

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

Why Set Deadlines?

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

How to icci?

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

Who to icci to?

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

Why send a icci copy?

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

What is the sequence of letters?

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

TOP

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

BOTTOM

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

Documentation from Experts:

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

When to hire a lawyer?

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

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

How to hire a lawyer?

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

Topic

[Tina]

funding option
Hi all,
I've heard of the change of getting autism funding but have not received anything from Victoria. I wonder if it is in effective starting from Oct or the child's next birthday?
I've heard that a lot of the parents received a letter from Victoria but I have received nothing. Any feed back is appreciated.
Thanks,

Tina

[Andrew Kavchak]

Hi Folks,
Below is the transcript from yesterday's Hansard of the House of Commons relating to the first hour of debate at second reading on Senator Munson's Bill S-210 regarding Autism Awareness Day. The debate went into a discussion of more than "awareness" and clearly exposed the Government's approach. Lois Brown's speech was particularly revealing. When she claims that one of the important things that the government learned at their one-time symposium was that autistic people need to be heard, she clearly revealed that the bureaucrats are using some the arguments of the high-functioning Aspergers' crowd as an excuse to do nothing and backbench politicians read whatever the bureaucrats write which is approved by PCO and PMO. How can you hear someone who can't talk? Is the lack of ability to communicate not one of the three criteria in DSM-IV? Has this obvious contradiction not been flagged by at least one simpleton MP?

My guess is that if it ever comes up for a second hour of debate and a vote, the Bloc will team up with the Conservatives to defeat the Bill and not refer it to a committee for review and then second reading. The Bloc should of course be ashamed of themselves. When Andy Scott's motion for a National Autism Strategy was first up for debate a few years ago the Bloc Health crtitic, Nicole Demers, got up and made the most misleading BS speech about how Quebec is a leader in autism programs and services. Anyone who knows the truth of course realizes that that was nonsense. Ironically, it was just yesterday that the Quebec Ombudsman issued a report that was critical of the Quebec government's handling of the autism file.

Now…will the Quebec autism society send Duceppe a copy of the report and his MP's speech and point out to the Bloc that their position is based on a fantansy vision of Quebec and that they should stop believing in unicorns and leprechauns, etc. and get real for a change when it comes to the health of Quebeckers, particularly Quebec children? Of course not. So many great opportunities missed.

To be honest, what really bugs me is that there are so many people in this country who claim to be our voice, and who have jobs where they get paid to represent our interests. But two of the MPs below claim that they did not hear about the autism crisis from these paid "Executive Directors", etc. Instead, it was from members of the community like a father wearing a sandwich board sign every day at lunchtime on Parliament Hill near the flame. Five years later it is nice to know that some remember. Of course, I never doubted for a second that being visible outside their windows and spoiling their view would get at least some attention.
__________________________
House of Commons
Hansard, October 9, 2009.

PRIVATE MEMBERS' BUSINESS
(1330)

World Autism Awareness Day Act

Hon. Shawn Murphy (Charlottetown, Lib.) moved that Bill S-210, An Act respecting World Autism Awareness Day, be read the second time and referred to a committee.

He said: Madam Speaker, I am pleased to rise in the House today to move this bill. This bill originated in the Senate and I am pleased to continue the work in the House. I want to publicly thank Senator Jim Munson for guiding this bill through the Senate. I also want to take this opportunity to thank my colleague, the member for Newton—North Delta, for seconding the bill.

The purpose of the bill is rather simple. It is to raise awareness about autism, a neurological condition that affects an increasing number of families in Canada and around the world. According to some reports, autism affects more children worldwide than cancer, diabetes and AIDS combined. Published reports put the rate of children living with autism at one in 165. Recent reports that originated in the United States put that number quite a bit higher.

It affects all races, all regions and all walks of life. To a certain extent, autism isolates those who have it from the world around them. Many different therapies are available, but the waiting lists are extremely long. Many of the accepted methodologies are partially covered by our health care system in some instances while in other instances they are covered by another envelope of government altogether outside of the health care system.

While there is much to learn about autism, we do know, and this is an uncontested premise, that the earlier the treatment can begin, the more successful that treatment tends to be. When people with autism do not receive timely treatment, it means that they are denied the tools they need to succeed and participate in and contribute to society.

Both waiting lists and costs are barriers. Treatment for autism can cost up to $65,000 per annum. Each province has a different approach to funding treatment and far too many families have to refinance existing loans, find second jobs, or make other sacrifices to ensure that their children receive the necessary medical treatment they need. There is no consistency across Canada and I submit that there is no equity or fairness either.

Untreated autism can lead to a lifetime of exclusion and often results in individuals being placed in institutions at a cost far greater than the treatment would be. A year or two ago, the Senate wrote and published an excellent committee report entitled “Pay Now or Pay Later: Autism Families in Crisis”. I urge every member in the House and those watching on TV to read that excellent report.

Financial strain, fatigue and constant worry for their child erode the mental and physical health of parents. Parents need our help. This is an issue that cries out for a response from the federal government, our 10 provincial governments, and the three territorial governments.

I could go on about the lack of a federal strategy, the lack of necessary research, et cetera. However, I will stick to the bill.

This bill talks about raising awareness. Let us make it absolutely clear that today will not immediately change the reality of one person affected by autism. They will still have to fight to get treatments and make sacrifices to pay for these treatments, but if Canada were to acknowledge their reality, even for one day, those families might no longer feel so alone.

On April 2, World Autism Awareness Day, people with autism and their families will feel the respect and admiration they deserve from their fellow citizens. To a limited extent, such a day will show support, but it will also send a message about autism to those who do not know about this condition.

It will be an opportunity for people to learn about autism and recognize that there are many families in their communities living with autism, including neighbours, friends and colleagues who deserve to have their reality acknowledged and supported by governments at both levels.

In the United States, I submit, much more is being done to address autism. The combating autism act of 2006 authorizes nearly $1 billion in expenditures over five years to help families with autism.

This landmark single-disease legislation recognizes autism for the national health crisis it is. This funding will double expenditures on existing programs, including a significant increase in spending for research.

President Barack Obama has promised to support increased funding for autism research, treatment, screening, public awareness and support services. Until Canada gets to the same level of support, let us at least recognize that autism is serious and affects a growing number of families. Let us as a House declare April 2 of each year World Autism Awareness Day.

All children have the right to succeed, and as parliamentarians we have the responsibility to ensure that all Canadian children have the necessary tools to do so. It is clear that this issue goes well beyond party lines and connects Canadians from coast to coast, from all regions and all walks of life.

Many colleagues in the House have been very helpful on this particular issue and have supported this and other bills that have come forward. I would like to again thank Senator Munson, and the hon. members for Sackville—Eastern Shore, Sudbury, Edmonton—Mill Woods—Beaumont and Verchères—Les Patriotes for their admirable work.

In closing, I want to remind hon. members that Canada has signed 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 commit us to take action to see that children with disabilities enjoy a full life in conditions that ensure dignity, self-respect, self-reliance and full participation.

Let all hon. members take one more step forward and join the 192 other countries of the world that have made April 2 World Autism Awareness Day. Autism can no longer be ignored in this country. More needs to be done for those whose lives are affected by this disorder.

I hope, as a member of Parliament, everyone will support the bill, and I hope also that as members of Parliament, Senators and Canadians, we can work collectively to ensure that Canada will soon have a national autism strategy.

Mr. André Bellavance (Richmond—Arthabaska, BQ):
Madam Speaker, are we resuming debate?

The Acting Speaker (Ms. Denise Savoie):
I want to clarify that we are resuming debate.

Mr. André Bellavance:
Madam Speaker, I am pleased to speak to Bill S-210, An Act respecting World Autism Awareness Day.

This initiative follows that of the UN, which, in 2008, proclaimed April 2 as World Autism Day in order to encourage families affected by this disease to call for the services to which they are entitled. In Quebec, we already have Autism Month—the month of April—while in Canada it is the month of October. We are right in the middle of Autism Month. It works out well that we in this House can discuss Bill S-210, introduced by a Liberal senator.

From the outset, certain aspects of the preamble of Bill S-210 are inconsistent with the constitutional rights of Quebec and the provinces. Even though this is 2009, even though the Bloc Québécois has been here since 1993 and even though before the Bloc Québécois arrived a good number of MPs from Quebec from various parties defended the interests of Quebec in the House, we have always talked about federal interference in provincial jurisdictions. It seems to go in one ear and out the other and again today we must explain, and explain again, how important it is for the government to respect provincial jurisdictions.

We are therefore of the opinion that any reference to a national health system, which is an area under the jurisdiction of Quebec and the provinces, should be removed from the bill, and we wish to propose amendments to Bill S-210 to that effect.

However, we do support the basic premise of the bill. Autism spectrum disorders are affecting more and more children around the world, so it is important for families to have access to a growing range of appropriate services. If the federal government wants to invest money in health care, we will not stand in its way. But the trouble starts when it tries to impose conditions. We all know that this matter falls under Quebec's exclusive jurisdiction and that Quebec is in charge in this area. The government should therefore transfer the necessary funds, and Quebec will develop its own policies, just as it has always done so well.

A World Autism Awareness Day is a good idea, not only because it will raise public awareness of this complex syndrome, but also because it will encourage people to help improve thousands of families' quality of life.

I would like to take a few minutes to talk about some examples from my riding. One of the prime examples is an organization dedicated to the well-being of families with autistic children or children with learning disabilities. That organization is the Centre de stimulation L'Envol, a community organization that opened its doors in Victoriaville in 1996 and offers stimulation and recreation activities for children aged 0 to 12 with communication disorders.

L'Envol's mission is to promote the availability of a complete range of special services to support families and help children with developmental disorders reach their full potential.

In 1994-95, Marguerite Bourgeois, a mother of two children with serious communication disorders, had no access to special services. She got an idea, and she decided that it was up to her to take charge and open a centre in Victoriaville to help families like hers. She got parents together, developed a plan for an early stimulation centre, and presented the plan to various community partners and the regional health and social services authority.

Thanks to the financial support of various social organizations and private donations, the Centre de stimulation L'Envol opened its doors in Victoriaville in September 1996, as I said.

I will give two short definitions to illustrate the specific nature of L'Envol's client base. I think that pretty much every member of this House can think of a number of people around them, perhaps even in their families, who have children with this sort of communication disorder. One cannot be unaware of it.

Pervasive developmental disorders include several qualitative impairments ranging from mild to severe in three developmental areas: social interaction, verbal and non-verbal communication, and restricted and stereotyped patterns of behaviour and interests. Autism is the most well known.

Dysphasia is a pervasive impairment affecting verbal communication which is characterized by a slow and atypical development of the power of comprehension and use of language. How severely individual aspects of speech are affected will vary from one child to the next and even in the same child. To varying degrees, dysphasia disrupts verbal communication, socialization, learning in school and the performance of certain tasks. This gives an idea of the areas in which the Centre de stimulation L'Envol in Victoriaville does its work.

Each region of Quebec has several organizations sharing the same goals and working to help families and parents. On l'Envol's website, which I visited this morning, we can find several interesting testimonies from families living with this hardship, although these testimonies do show that there is hope. That is why it is important not only to raise public awareness, but also for the public to make financial contributions to help these people.

I will take for example the testimony of two individuals whom I know well: Geneviève Poudrier and Guy Désilets, of Victoriaville. They have one child and they share their experience on L'Envol's website. Let me quote them briefly.

We were very worried when we learned that Benjamin [their child] was not developing like all the other children. At 32 months, he did not say a word and played alone, lining up his cars, his sausages or his pieces of toast. We put a lot of energy into giving him what he needed: stimulation. Now, he says simple sentences, knows his letters and loves finding words and reading short books. Benjamin plays with his friends at day care and gives us a warm welcome when we go to pick him up.

We can see from this testimony from the parents that things were very difficult for them initially. It must be very hard for parents to see that their child is not developing in the same way as his friends. But a little later, with stimulation, thanks in part to L'Envol, the child made remarkable progress. Obviously, every child will progress at his own pace, but without stimulation, the parents would not have gotten the results they did.

Guy Désilets, Benjamin's father, is an officer with the Sûreté du Québec in the Arthabaska RCM, in my region, and he decided to get involved. He organized a golf tournament for police in the region to raise funds for the Centre de stimulation L'Envol. Year after year, his golf tournament has raised more than $15,000 for the Centre de stimulation L'Envol. It is truly a phenomenal success. L'Envol has used the money to replenish its stock of games for the children and to keep the cost of its services as low as possible. I would like to pay tribute to police officer Guy Désilets for his excellent initiative.

Since 2003, and I will conclude in a moment, Quebec has had an action plan for those affected by autism. We have to continue moving in that direction. We have to further encourage governments to adopt policies like the one adopted by the Government of Quebec.

Bill S-210 opens the door to a national strategy, which poses a problem, as I was saying earlier. However, with the necessary amendments, the Bloc Québécois would have no problem supporting such a measure. The need to continue building awareness stems from the fact that autism spectrum disorders and pervasive developmental disorders currently affect about 60 children per 10,000, while in 1980, it affected 10 per 10,000. It affects all children equally, regardless of social conditions, race and ethnicity. It affects people from every social class. That is why I am asking the members of this House to carefully consider Bill S-210.

Mr. Peter Stoffer (Sackville—Eastern Shore, NDP):
Madam Speaker, again it is a pleasure to rise on behalf of the New Democrats to lend our support to this important measure introduced by the Senate, Bill S-210, to enact world autism day from a Canadian perspective.

I want to go very briefly into my own personal history on this particular subject at hand. As few years ago, I was walking from my office into the Centre Block and I noticed a man by the Peace Tower flame and he had a sandwich board sign on him saying “Autism in medicare now”.

I will be honest that I was very ignorant about what he was trying to say so I asked him what his concern was. That then developed into a very nice friendship. That person's name is Mr. Andrew Cavachuk. Mr. Cavachuk has done yeoman's work in trying to raise the level of awareness, not just for his own son but for all children across the country who have autism spectrum disorder.

Autism comes in various forms and different ranges, from Asperger syndrome, to flight risks. to non-verbal and so on.

In my travels throughout my own riding, I found a fair number of people who have children who are autistic. One personal friend of mine in Vancouver has two children who are autistic. Anyone who has met children with autism find they are some of the most beautiful, kind, wonderful and the most loving children one could ever possibly meet. What their families require is support. They need support from the federal government.

This is why we moved our own national autism day. We presented a bill before the House of Commons which has not come up for debate in terms of enshrining that autism is in the medicare system. We do not want the federal government to tell the provinces what to do.We know that the delivery of health care is a provincial responsibility. However, what we have said over and over again is that there is no reason why the provinces need to reinvent the wheel.

That is why we have asked repeatedly for a national autism strategy in Canada. We know there is a patchwork quilt of efforts across the country. In Nova Scotia, a handful of children get assistance, whereas in Alberta I believe the family can receive assistance from the government for children up to 18 years of age.

No matter where someone lives in the country, children who have autism should be able to receive the care, treatment and support they need right across the country.

I am sure some members remember a few years ago the very emotional press conference in Toronto where a couple of people had to make the decision to leave Ontario, their birthplace and the place where they raised their children, because their child had autism and Alberta could provide better care than the province of Ontario.

As a society, no one should have to live through that. We are a much better society than that.

What we have asked the federal government to do is to coordinate a strategy–I know the Bloc does not like hearing this word–a national strategy. What we would like to do is bring the health ministers and the experts together, along with the federal government and devise a strategy so that every province, territory and first nations reserves can have the expertise and the information at their hands to develop the support systems to assist these families and their children.

Autism was first described to me by a young boy named Josh Bortolotti who is from Ottawa. For those of us who have known Josh for a long time, people should watch out for this young man because one day he could be the prime minister of this country. His sister has autism and he made it his personal life's crusade, when he was 12 years old, to fight and to stand up for his sister because she could not do it herself. Josh Bortolotti is a tremendously fine young man. Every year he asks us for pledges for his cause to raise funds for autism.

If young children like this can show us in the House of Commons the leadership that is required, then my hat is off to Josh Bortolotti, his family and especially his sister because I know one day she will get the help that she needs.

It is not just for the children. It is also for the parents. Many parents do not understand the concerns of autism. They do not understand what their children are going through until sometimes it is too late.

It was described to me that autism is like a puzzle. This is why applied behaviour analysis and IBI treatment are so very important, to get these children the minute that they are diagnosed and to work with them through repetition over and over again to develop their brains so that they can lead productive lives.

When we had press conferences a few years ago, we heard from specialists from Quebec that if a child is diagnosed at age two with autism, and that child and the family are worked with intensively for four years then that child can go to a regular school without any teaching assistance at all. That is the kind of investment in these children that we need. The unfortunate part is we do not believe that the provinces will ever have enough money to do this on their own. This is why we think it is imperative that the national government work with the provinces, territories and first nations reserves to ensure that we do not reinvent the wheel, to ensure that no matter where people live in this country, children and families with autism can get the help they deserve and most importantly, get the support they have.

At last count, I understand, there are close to 400,000 people in this country who have some form of autism and that number is rising rapidly. I will never forget the time Hillary Clinton, now a senator in the United States, offered a $200 million aid package for various research centres, for various states and various schools in this regard, because the national government of the United States understands that this is a very serious issue. It put a lot of federal money into this issue in order to assist families and to assist researchers in developing, hopefully one day, a complete understanding of what causes autism and to see how we can mitigate it in the future.

While we are working toward that, the people with autism in Canada need to know. I spoke to the hon. Minister of State for Democratic Reform who used to be the parliamentary secretary to the minister of health. We all worked together collaboratively a couple of years ago to bring a motion forward in the House which was adopted by all of us on that type of strategy. Unfortunately, over two years later we are still talking about it. We do not have a national strategy.

We are asking once again, with great respect to the government, because we know that government members have people in their constituencies who have this concern, and we know members of the government and the Conservative Party care about this issue as much as anyone on this side does. I ask if we can work in collaboration, if the House can really work together as it has done for other items over the years, such as the veterans' charter, to form and develop a national strategy for the development and treatment of autism, to help those children and their families. Then world autism day will be more than just a symbolic gesture or a date on the calendar. It will actually give these people hope, and hope is what they strive for. This is what keeps them going every day.

I have had the pleasure of meeting many children with autism. I have worked with organizations like FEAT of B.C. which is Families for Early Autism Treatment. I have worked with Mr. Cavachuk, Laurel Gibbons and people in my province of Nova Scotia who ask that autism be part of the national medicare package. But while we are working toward that goal, we need to make it loud and clear to these people that they have the full support of not only the Senate but also the House of Commons so that when world autism day becomes a reality, not only can we bring awareness of this issue to our country and the rest of the world, but maybe we could assist those researchers, those practitioners, and those families, and most importantly, give those people a hand up so they can lead productive lives.

If we do that, it will be a great day in the House of Commons and a great day for all Canadians. I say God bless to all the children with autism and to their families, and may the bill pass fairly quickly.

Mr. Sukh Dhaliwal (Newton—North Delta, Lib.):
Madam Speaker, it gives me great pleasure to speak to this legislation and to second it. I appreciate the work done by the hon. member for Charlottetown to bring the bill to the House. I would also like to thank the Senate for the great work it has done on this legislation.

A day to mark autism awareness has never been more important here in Canada.

If we go back just six years ago, autism was not recognized as the problem it is today. A 2003 study estimated that approximately 1 in 450 Canadians suffered from one of the various forms of autism. That would be about 67,000 Canadians across Canada.

The worst thing about this mysterious condition, however, is that this number is higher among children and it is increasing every year. In fact, the Autism Society of Canada reported there has been a steep rise in the number of cases in the three provinces that monitor these numbers closely: Saskatchewan, Quebec and my own province of British Columbia. A children's hospital study in Montreal put the number at around 1 in every 147 children. According to a study in the U.•••••• used to be around 1 in every 150 kids but now the number may be closer to 1 in 100.

Such a big change; such a huge increase in only six years.

As a Senate study makes clear, the reasons for this increase are difficult to pinpoint. In many respects, it could be because the very definition of autism has now become much wider. It is true there is now more exposure in the media for such mysterious forms as Asperger syndrome.

The truth is that we would not have to knock on many doors in almost every neighbourhood in Canada before we would find a family that is now trying to cope with autism. That family may be struggling with the mysteries of autism and the huge toll it can take on their day to day lives.

In fact, within my own community, Louise Witt and Amber Himmelright have quite a lot to say about what the Government of Canada is doing about autism, or should I say not doing.

When the Conservatives first came into office they talked a good game about a national autism strategy. They knew what Canadian families were saying about the kind of sacrifice autism required.

I have three children of my own and I can tell members that I feel fortunate that I am one of the few Canadians who might not be faced with a threat of personal bankruptcy if just either my boy, Arjan, or one of my daughters, Keerat or Joat, was diagnosed. It is not uncommon for families to pay more than $60,000 a year, and that is just for the basic treatment.

The worst thing is that the cost for effective treatment also varies widely from province to province. Imagine how heartbreaking it would be for someone to realize that if he or she lived in another part of the country or if they only had more money their child would get the needed care.

The government has known these facts for some time but, as I said, the government did what it normally does. It leads with communications and then real action limps along later, sometimes much later.

Two years ago, the government announced a website to give families information and $1 million over five years to set up a research chair. There is still no research chair and that website is not much to speak about either.

We could say that the government had to cut back on plans with the state of the deficit being what it is, the deficit it could not see and then denied for as long as it could. Perhaps the government realized it could not fulfill the promise it made to thousands of families across this country who are looking for real leadership and who are waiting for a real plan.

It is a difficult conversation the government must be having with those families now. Louise Witt will say that there are many who must bring professional therapists up from the U.S. because they cannot find these special services in Canada. In my own riding, in all of Surrey and Delta, there are only a handful of trained therapists, and they are overbooked for months in advance as it is.

The worst thing is, whether it is in Surrey or Delta or whether the therapist comes from the states, there is so little health care coverage that the bill breaks the bank anyway.

It is also difficult for the government to talk about other promises on autism, like the stakeholder symposium. Again, as Ms. Witt said, the symposium was held in secret. It was only for hand-picked invitees, those who would probably go easy on the government and downplay the kind of support families need.

All of that does not matter though, because no one can tell us what came out of this symposium anyway. We would be waiting a long time to hear from the government. Maybe it did not like what it heard and is afraid to act upon it.

All of that said, this bill is in some small measure a way to put autism back on the national agenda. If awareness can get people talking, it might get the government to listen.

For the families who are facing bankruptcy, who are forced to put their children in foster homes because they cannot afford the day-to-day support, and for the parents who are trying every possible medical breakthrough they can in the hopes of seeing their children able to cope with this affliction, awareness is only a first step but it is an important one.

That is why I ask all members of Parliament to support this bill.

Ms. Lois Brown (Newmarket—Aurora, CPC):
Madam Speaker, I appreciate this opportunity today to speak to the issue of autism, in light of hon. Senator Munson's Bill S-210, An Act respecting World Autism Awareness Day.

This government recognizes that autism is a serious health and social issue, affecting many Canadian families and individuals from all walks of life, and that more knowledge and awareness of this condition is necessary. That is why the government has committed important resources and funds to autism research and knowledge dissemination. It is also the reason why the federal government has declared April 2 as World Autism Awareness Day in Canada.

Over recent years, attention to this condition has been on the rise and, fortunately, so is our knowledge about autism.

In November 2007, the Government of Canada hosted a symposium devoted to the very subject of autism knowledge. This event provided a wonderful opportunity to bring together leading Canadian researchers, policy-makers and people affected by autism to discuss the latest in autism research.

Since the topic being discussed here today is autism awareness, I would like to share some of the key findings and points of view that were offered at the symposium.

Those directly affected by autism contributed many valuable perspectives. Some stressed the importance that autistic individuals be heard and be in charge of their own lives. Many stress the importance of understanding people's capabilities as well as their challenges. A key message, however, is that individuals affected by the condition can and do succeed with the right supports.

Research is recognized as a key enabler of change across a spectrum of different issues and this is also true in relation to autism. The symposium was a venue for a wide variety of Canadian researchers to share their latest findings on this issue. These findings include a growing understanding that genetics play a role in autism and for the first time researchers have been able to show how changes in some genes contribute to autism. Findings also indicate that autism genes may act differently in boys than in girls.

In terms of diagnosis, progress is being made in identifying the early signs of autism. Some of these can be detected by 12 to 18 months of age, allowing for earlier intervention. Symptoms of autism can include impaired communication, difficulty in engaging in interactive play, a lack of eye contact and social smiling and decreased social interest. While this is not an exhaustive list, it provides some insight.

Canadian and international studies show that autism spectrum disorders are more prevalent than previously believed. However, this should be considered in the context of improved diagnostic techniques, better reporting and a broader definition of autism.

With respect to adults with autism, it also recognized that there was a need to offer supports across the lifespan. Moreover, adults with autism could suffer from co-morbid conditions, which furthers the need for supports.

I hope that by sharing some of these thoughts and findings today, I have contributed in a small way toward increasing awareness of autism. It is clear that much is known about this condition, but equally clear that much remains unknown.

I am confident that as time goes on, the challenges posed by gaps in knowledge and lack of awareness will be overcome. In addition, I hope that in declaring April 2 World Autism Awareness Day, the government has greatly encouraged the exchange of knowledge in order to increase awareness and comprehension of this serious condition.

Mr. Andrew Saxton (Parliamentary Secretary to the President of the Treasury Board, CPC):
Madam Speaker, I appreciate this opportunity today to speak to the issue of autism in light of Bill S-210, respecting world autism awareness day, being sponsored in the House by the hon. member for Charlottetown.

Autism is a health issue that presents lifelong challenges to those affected, as well as to their family members and society as a whole. Having easy access to information and knowing we can trust that information can make a huge difference in the lives of these families. This government wants to ensure that all Canadians have access to the same high quality, evidence-based information on autism.

Because we still do not know what causes autism and need greater understanding of the most effective treatments and interventions, the federal government is pleased to work with partners and stakeholders to promote autism awareness by investing in activities which support a stronger evidence base. This is why the government, in November 2006, announced several new initiatives to strengthen research to enhance our understanding of autism.

First, the federal government has been working toward developing options for autism surveillance. Recognizing that autism surveillance is new globally and may be technically challenging, the Public Health Agency of Canada has been working with researchers to see what could be done in Canada.

Between November 2007 and May 2008, the Public Health Agency of Canada undertook a consultation process to examine options for development of an ASD surveillance program for Canada. As well, in December 2008, the Government of Canada approved funding for Queen's University to expand its existing ASD surveillance system. This activity now includes children in Manitoba, southwestern Ontario, Prince Edward Island and Newfoundland and Labrador. This is another step toward creating a national surveillance system for ASD.

Second, Health Canada continues to enhance its website on autism. It holds useful information, including links to respected external sources.

Third, this government committed to establishing a chair in autism research and intervention, and our government is hopeful for a successful outcome.

The minister is looking at alternatives that are in keeping with the original intent of this funding. Further, last year the federal government provided funding to the Canadian Autism Intervention Research Network, CAIRN for short, to translate its acclaimed autism information website into French. Canadians can now log on to the popular and respected site and access French or English summaries of autism research, presented in terminology that is useful to families that need it.

In 2008 this government committed $75,000 over two years to the Offord Centre for Child Studies to support autism research priorities and to host a conference to be held this fall. In addition, the CAIRN website will be further updated in order to offer Canadians access to the most recent autism research available.

Between 2000 and 2008, through the Canadian Institutes of Health Research, CIHR, the Government of Canada spent or committed approximately $35.3 million in autism-related research projects. These projects are led by researchers at universities and affiliated teaching hospitals across Canada.

As one of CIHR's 13 institutes, the Institute of Neurosciences, Mental Health and Addiction is supporting autism-related research and is working with partners in the autism community to set research priorities, reduce duplication and accelerate the translation of knowledge into improved health. For example, CIHR is funding a team, led by Dr. Eric Fombonne from McGill University. The aim of this program is to train the next generation of researchers and uncover the mysteries of autism.

CIHR is also funding the autism research of Dr. Jeanette Holden at Queen's University and her multidisciplinary team of over 60 researchers, clinicians and parents from across Canada and the United States. Dr. Holden's team is examining the causes, origins and effects of autism spectrum disorders and the effects of treatment on persons with autism.

As well, along with Genome Canada, CIHR provides support to the autism genome project. This initiative will help to increase our understanding of the genetics of autism, which could, in the long term, lead to early diagnoses.

Finally, in November 2007, this government hosted a national autism research symposium, which brought together researchers, service providers, policy-makers and those affected by autism to share knowledge and informed research priorities.

This government is confident that enhanced knowledge will lead to real results. Although we have made great strides in increasing the knowledge and awareness, there is still much to be done.

Through our activities, the federal government is contributing to increased awareness of the challenges faced by individuals with autism and their families.

Mr. Gerald Keddy (Parliamentary Secretary to the Minister of International Trade, CPC):
Madam Speaker, it is certainly an honour to rise to speak on this important issue today.

Hon. Senator Munson's bill, Bill S-210, respecting World Autism Awareness Day, is an important issue that for far too many years has been overlooked by Canadians and misunderstood by them. In the last decade, especially in the least two years certainly, our government has brought autism to the forefront and recognized the importance of increased research and dollars to help families with autism.

Our government recognizes that autism is a serious health and social issue, affecting many Canadian families and individuals from all walks of life and that more increased awareness of this condition is necessary. That is why this government has committed important resources and funds to autism research and knowledge decimation.

Our government also declared April 2 as World Autism Awareness Day in Canada.

We are striving to ensure that all Canadians have access to high-quality, evidence-based information about autism. We are dedicated to working with partners and stakeholders in order to better comprehend what causes autism and how we can better coordinate the most effective treatments and interventions. We also work with our partners to promote autism awareness by investing in activities that support a stronger evidence base.

We know about autism. There is a growing understanding that genetics play a role in autism. For the first time, researchers have been able to show how changes in some genes contribute to autism. Other proof indicates that autism genes may act differently in boys than in girls.

Progress is also being made in identifying the early signs of autism. Some signs can be detected by 12 to 18 months of age. As one of my hon. colleagues mentioned earlier, this allows for earlier intervention.

Let me tell members about some of the signs, as mentioned earlier. They can include impaired communication, difficulty in engaging in interactive play, a lack of eye contact and social smiling and decreased social interest. These are but a few of the examples of early diagnosis.

Evidencing Canadian and international studies show that autism spectrum disorders, or ASD, are more common than previously believed. We should remember this in the context of improved diagnostic techniques, better reporting and a broader definition of autism. It is also recognized that adults with autism also have a need for support throughout their life. They may also suffer from secondary illnesses that may also require medical follow up.

One question that comes to mind is government action.

We were pleased to announce, in November 2006, several new initiatives to improve ongoing research to enhance our understanding of autism.

First, we have been working toward developing options for autism surveillance. Between November 2007 and May 2008, a consultation process was put in place to examine options for the development of an autism spectrum disorder surveillance program for Canada.

Following that, in December 2008, the Government of Canada approved funding for Queen's University to expand its existing ASD surveillance system. We are happy to say that the program now includes children in Manitoba, southwestern Ontario, Prince Edward Island and Newfoundland and Labrador.

Our government continues to update the Health Canada website on autism. On it, people can find useful information, including links to respected expert website.

Last year, our government provided funding to the Canadian Autism Intervention Research Network, or CAIRN, in order that it could translate its acclaimed autism information website into French. Canadians can now log on to this respected site and access French or English summaries of autism research that are easy to use and family friendly.

Last year our government committed $75,000 over two years to support autism research priorities and to host a conference that was held last week. In addition, the CAIRN website will be further updated in order to offer Canadians access to the most recent autism research available.

Since the early two thousands, the Canadian Institutes of Health Research have spent approximately $35.3 million in autism-related research projects. These projects are led by researchers at university and affiliated teaching hospitals across Canada. That $35.3 million spent in the last decade has probably advanced autism research further in the last 10 years than we have in the previous 50 years. It is extremely important. I certainly commend our government for continuing this research, and I commend the previous government for starting it. This is very important for early intervention and understanding of autism.

As an example, the Institute of Neurosciences, Mental Health and Addiction, a part of the Canadian Institutes of Health Research, is supporting autism-related research. It is working with partners and stakeholders in the autism community in order to set research priorities, avoid duplication, and speed up the translation from knowledge to health.

They are also funding autism research at Queen's University. Experts there are part of a multidisciplinary team of over 60 researchers, clinicians and parents from across Canada and the United States. The Queen's University team is examining the causes, origins and effects of autism spectrum disorders, and the effects of treatment on persons with autism.

Early in its first mandate, the government hosted a national autism research symposium, which brought together researchers, service providers, policy-makers, and those affected by autism to share knowledge and inform research priorities.

I hope that my words today have provided hon. members with the opportunity to see the efforts made by our government toward increasing awareness of autism. We must continue our efforts to improve knowledge and find solutions to those dealing with this condition.

I hope that in declaring April 2 as World Autism Awareness Day will help to highlight the challenges and that it will trigger everyone's level of awareness and comprehension for this serious condition.

The government has reacted to an issue that affects many Canadians. Quite frankly, the importance of having this informed debate in the House of Commons only leads to a further intelligent discussion on this subject. Unfortunately, like many health issues, we have for far too long ignored this important issue. Families have strived to cope with autism on their own. Priority research was not available. There was no safety net available. They did not have a network of individuals they could turn to and they struggled mightily through the years with this very issue.

We are headed in the right direction. We know there is more that needs to be done. I certainly appreciate the work this government and other governments have done so far, and at the end of the day will lead to working right across the country with autistic members of families, and help them to live more full and fruitful lives.

Mr. Scott Reid (Lanark—Frontenac—Lennox and Addington, CPC):
Madam Speaker, I want to speak very briefly about one of the most terrible conditions that can strike a child and family. I first learned about autism at an intellectual level. From reading about Temple Grandin, who is a professor at a university in Colorado and suffers from mild autism, I learned what it might be like to experience.

She has written a book describing what it is like and how she has conducted her life. She gives a bit of a picture about the kinds of shutters, walls, doors and barriers to communication that the condition of autism places around people. It is a fascinating book. She has gone on to tremendous success and has provided the world with a view of autism that helps to expose a little bit of the mystery of why children who are so bright, lively and intelligent seem to withdraw from the rest of the world, and what it is like being inside that little cell they get trapped in, where they are unable to communicate or express feelings that nevertheless exist.

It is a fascinating way of exploring what the world of autism is like. In terms of actually experiencing what it is like for those who are family members, I had that experience working here on Parliament Hill. Leaving the Hill every day a few years ago, I used to notice that there was always a man there at lunch time. He would come up wearing a sandwich board with a motto about the importance of autism.

Those of us who work and spend a lot of time up here sometimes wind up getting to know the protestors who are here frequently. This man was a public servant who, during his lunch hours, would come and protest on Parliament Hill because his son was autistic. The experience of having a son facing autism, and the lack of funding and support for the early onset treatment that he and his wife felt was necessary were destroying them financially.

They recognized that it was destroying others financially. They wanted to draw attention to the plight of parents in their position. I had the chance to chat with this man, whose name was Andrew Kavchak, and learn about some of the terrible emotional and financial costs that can be imposed on a family that has a child suffering from this terrible disease.

I mention both of these examples because they are both examples of individuals trying to draw to our attention the importance of dealing with autism. This is what Bill S-210 attempts to do. It attempts to draw further attention to the condition of autism on the understanding that it is only when we as a society realize how severe and devastating this illness can be that we as a society will be able to focus the attention upon the condition necessary to allow us to overcome it.

We must mitigate the circumstances for those who suffer from autism, those who live in families that have been affected by autism, and those in the future who should have a reasonable expectation that we will find a way of ensuring that other children and families do not fall into the trap of autism.

Madam Speaker, I see that you are indicating to me that my time is up. In conclusion, I do think that this is a worthwhile initiative and I am glad to support it.

The Acting Speaker (Ms. Denise Savoie):
The hon. member will have approximately six minutes when this bill comes up again for debate.

The time provided for the consideration of private members' business has now expired and the order is dropped to the bottom of the order of precedence on the order paper.

It being 2:30 p.m., the House stands adjourned until 11 a.m. on Monday, October 19, pursuant to Standing Orders 28(2) and 24(1).

(The House adjourned at 2:30 p.m.)

[Andrew Kavchak]

Turn your TV on CPAC right now! Debate in the House on Bill S-210. Peter Stoffer just spoke and he was, as usual, our champion in the House!

[Andrew Kavchak]

From CBC.ca today….the story in La Belle Province. Some very noisy anti-ABA activists are located in Quebec.
____________

Improve autistic care: Quebec ombudsman

Last Updated: Thursday, October 8, 2009

Quebec's ombudsman says the parents of children with autism and other developmental disorders have legitimate concerns about the pitfalls they face in getting the services they need.

In a 125-page report on government services for children with pervasive developmental disorders (PDDs), tabled Thursday, Raymonde Saint-Germain calls on the province to speed up diagnosis and improve the continuity of care.

It has been six years since the government tabled a policy aimed at improving care for children with PDDs, but Saint-Germain said her office has been swamped with complaints from parents.

Quebec's ombudsman says it can take 18 months for children with pervasive developmental disorders. like autism, to get a diagnosis. (Rich Pedroncelli/Associated Press)And she said the complaints are warranted.

Getting a proper diagnosis for a child can take as long as 18 months, said Saint-Germain.

"It is very important to be diagnosed as soon as possible because the services are provided only when you have the diagnosis," she said.

Once parents have a diagnosis, they are quickly hit with scientific controversies and the different schools of thought about the type of interventions that should be used.

Support is lacking and parents must fulfil multiple requirements to obtain services.

Once parents have a diagnosis, Saint-Germain said their waiting game might start all over again once the child hits school age, because a child's file is not automatically transferred from the daycare system to the school system.

Saint-Germain has issued the government a list of 21 recommendations, which she said the Health and Social Services Ministry has agreed to apply.

She said doing so will not only make parents' lives easier, but could also save the government money in the long run.

In preparing her report, Saint-Germain said she held interviews with 167 parents and stakeholders.

[Andrew Kavchak]

Hi Folks,

Update from Ottawa,

First, CNN.com and other sites are reporting the latest study from the US CDC. The latest prevalence rate is now 1 in 100.

Further, Senator Munson's Bill regarding Autism Awareness Day will apparently be up for debate at second reading in the House of Commons this coming Friday, October 9, 2009. As you know, some MPs are against the Bill because it contains too many "whereas" clauses that rub some in high places the wrong way. Hopefully the community will take advantage of this opportunity to tell their MPs how they feel about this Bill, etc…

[Andrew Kavchak]

From yesterday's Hansards for the Senate and the House of Commons:

Thursday, October 1, 2009.

Senate:

Senator's Statements

Autism Awareness Month

Hon. Jim Munson: Honourable senators, today is October 1, and October is Autism Awareness Month. Many of you know how important this cause is to me.

I was saddened to see a story in the media only yesterday of a father in Edmonton who was so overburdened with the care of his autistic son — so stressed — that he killed his son and then took his own life. This tragic story tells us much about the painful isolation autism creates.

Autism, as we all know, is a baffling disorder. What causes it, how to treat it and how to cure it are mysteries we still must solve.

Our own Senate report, Pay Now or Pay Later: Autism Families in Crisis, speaks to the urgent need for funding for research and for families to afford treatment for their children. Too many families in this country are facing the tremendous challenge of this disorder on their own. I have met several of them.

There is Suzanne, the courageous grandmother who is raising funds to provide services for children even before they have a diagnosis. There is Josh, as we know, the devoted big brother who raises funds to help his little sister with autism. There are many other people I have had the honour to meet and the pleasure to work with. As this month unfolds, I ask honourable senators to remember that too many Canadians are facing autism on their own. We must show support and provide funding to help prevent terrible tragedies such as the one that took place in Edmonton.

Too many families are stressed and at the breaking point from the burden of dealing with autism without sufficient support. We can and must do better.

I ask honourable senators to remember these people and do what they can to break down the wall of autism and reach out to end their isolation and help create a better, more inclusive Canada.
_________________________

House of Commons:

Statements By Members

Mental Health Strategy

Ms. Judy Wasylycia-Leis (Winnipeg North, NDP):

Madam Speaker, on the eve of Mental Health Awareness Week let us agree that nothing short of a national mental health strategy is required.

The report, “Out of the Shadows At Last”, and the establishment of the Mental Health Commission of Canada under the direction of Senator Kirby have given mental health issues a national focus. Now it is time to turn this focus into a national policy, a federally funded program, working hand-in-glove with our provincial and territorial governments and our first nations, Inuit and Métis partners.

Now is the time for a national housing strategy that my colleague from Vancouver East initiated and was passed by the House yesterday, a strategy to overcome barriers that force people living with mental illness into deplorable housing situations or out of housing altogether.

Now is the time to implement Roy Romanow's recommendation to have mental health case management, intervention services, and coverage for medication management included in the scope of medically necessary services under the Canada Health Act.

For the 20% of Canadians who experience mental health illnesses over their lifetime, and aboriginal youth who are six times more likely to commit suicide, and on the occasion of the 25th anniversary of the Canada Health Act, that is the least we can do.
______________________________

[Andrew Kavchak]

Hmmm…I wonder if that is Mike Lake's riding?

[Andrew Kavchak]

Just a follow up today to the message I posted yesterday about how some people think everything is just fine…
_____________

From: Canada.com

Lack of autism help led to murder-suicide

News Services September 30, 2009

A father who murdered his autistic son, then killed himself, was overburdened for years because the boy had fallen through programming gaps and the family had been unable to get the help it needed, a family friend said Tuesday.

"This horrible thing that's happened is the result of an accumulation of stress because of the lack of resources. That's the way the mother sees it," said Karen Phillips, program director for the Autism Society of Edmonton Area.

The father, 39, and his 11-year-old son were found dead by police in their north Edmonton home Sunday afternoon.

© Copyright (c) Canwest News Service

[Andrew Kavchak]

Hi Folks,

Some of you may remember that back in November, 2006, a number of leaders of the FEAT BC organization, headed up by Jean Lewis, travelled to Ottawa for a few days of lobbying and agitation. Oh, what fun it was! Just before our protest demonstration on Parliament Hill we found out that the Health Minister, at the time it was Tony Clement, held a press conference and announced a five point plan to deal with autism. This was unprecedented. The Minister subsequently stated that we don't need a national autism strategy since we have this five point plan.

At the time Clement's office called the Autism Society of Canada and the local Ottawa Chapter of the Provincial Autism Society and had their representatives standing on the podium beside Clement. Did they realize they were being used like fiddles to sing the praises of government "action on autism"?

I subsequently heard that the local Ottawa representative from the Francophone autism community fell for the invitation without knowing what was going to be announced and she subsequently regretted it. But what about the ASC President who was there and giving the impression that she endorsed the five point plan?

Well, here we are three years later. And just what is the result of this five point plan? On the first day that Parliament resumed sitting after their summer break, a number of questions on the Order Paper were replied to. See below and judge for yourself. We had a symposium. We have a chair in BC. The Public Health Agency of Canada did a survey and now will consider getting data about contaminants in the environment and Attention Deficit Hyperactivity Disorder. We have a website (oh boy!). We have a bureaucratic "branch" or something at Health Canada that has "the lead" on the ASD file (i.e. is responsible for writing memos to the Minister about how they have "the lead" on writing Memos to the Minister). And finally, some crumbs of financial assistance are being given to some "centre" somewhere for something.

So,…. does anyone share the former Health Minister's thought that we don't need a National Autism Strategy because we have his five point autism action plan? This would actually be funny if it was not so disgusting and tragic.

Colin Carrie, the Parliamentary Secretary for Health (or some other title of the month) stated earlier this year in response to a question from Shawn Murphy that this Conservative government has done more for autism than any other government. So little, but so proud.
_______________________________

House of Commons
Hansard
Monday, September 14, 2009

Questions on the Order Paper

Question No. 337–

Hon. Shawn Murphy:

With regard to the November 2006 funding announcement made by then-Health Minister Tony Clement detailing a five-point plan for autism spectrum disorder (ASD) funding in Canada, what are the details regarding:

(a) the status of the commitment to sponsor an ASD stakeholder symposium;

(b) the status of the commitment to establish a chair focusing on interventions and treatment for ASD;

(c) the status of the commitment to undertake a consultation process to see how an ASD surveillance program could be set up through the Public Health Agency of Canada;

(d) the status of the commitment to establish a dedicated web page on the Health Canada website with ASD information and resources;

(e) the status of the commitment to designate the Health Policy Branch of Health Canada as the ASD lead for actions related to ASD at the federal health portfolio level; and

(f) how much federal funding these and other autism programs will receive during the fiscal year 2009-2010?

Hon. Leona Aglukkaq (Minister of Health, CPC):

Mr. Speaker, in response to (a), with regard to the commitment to sponsor an ASD stakeholder symposium, in November 2007, a national symposium on autism research was hosted by Canadian Institutes of Health Research, CIHR, to share knowledge and to support dialogue on future research priorities. The report from this Symposium is now available on the CIHR web site.

In response to (b), with regard to the commitment to establish a chair focusing on interventions and treatment for ASD, funding for an autism research chair to address issues related to treatments and interventions was announced at Simon Fraser University on October 20, 2007. This joint initiative with the Government of British Columbia is being supported with $1M in federal funding over five years. Efforts to establish a Chair are currently underway by Simon Fraser University.

In response to (c), between November 2007 and May 2008, the Public Health Agency of Canada, PHAC, undertook a consultation process to examine options for the development of an Autism Spectrum Disorders, ASD, surveillance program in Canada. This process was guided by a steering committee comprised of ASD experts, and included three components:

1. an environmental scan of the current scope of ASD surveillance activities in Canada;

2. a technical workshop on the information needs and data collection options for ASD surveillance; and

3. a broader stakeholder consultation on the information needs of ASD communities and how they would like surveillance information disseminated to them.

The results of this consultation process will be used by PHAC as it undertakes a new national surveillance system for developmental disorders such as autism. This initiative, a component of the federal government’s 2008 action plan to protect human health from environmental contaminants, will be a national sentinel surveillance program to track and assess the linkages between environmental contamination and developmental disorders such as sensory impairments, autism spectrum disorders and attention deficit hyperactivity disorder. Using centres for surveillance expertise, data will be collected from a variety of local sources such as schools, hospitals, community paediatricians, and other health professionals.

In response to (d), with respect to the commitment to establish a dedicated web page on the Health Canada website with ASD information and resources, the website has been created. It provides facts and information on ASD, as well as links to Canadian and International autism organizations. The website can be found at: http://www.hc-sc.gc.ca/hc-ps/dc-ma/autism-eng.php As well, in 2007-08 Health Canada provided $50,000 to the Offord Centre for Child Studies (a research centre dedicated to improving the life quality of children with mental health and developmental problems) to support the dissemination of the latest evidence pertaining to autism through the Canadian Autism Intervention Research Network, CAIRN, via the Network’s website. The Canadian Autism Intervention Network, CAIRN, is a group of parents, clinicians and scientists working to conduct research in early intervention in autism, and is part of the Offord Centre for Child Studies. The web page on the Health Canada website links to the CAIRN website in order to direct Canadians to evidence-based information of a more clinical nature, and complement the content on the Departmental site.

In response to (e), with respect to the commitment to designate the Health Policy Branch of Health Canada as the ASD lead for actions related to ASD at the federal health portfolio level, this was done in 2007. Since then, the Health Policy Branch has become the Strategic Policy Branch, and the Chronic and Continuing Care Division within the Branch holds the lead on the ASD file.

In response to (f), with respect to federal funding for autism related initiatives during fiscal year 2009-10, the federal government has committed $200,000 to Simon Fraser University, as part of the $1M over five years for the Autism Research Chair. In addition, the federal government has a multi-year contribution agreement with the Offord Centre for Child Studies, with $25,000 in 2008-2009 and $50,000 in 2009-10, for a total of $75,000 over two years. This funding will support the development and dissemination of research priorities in Autism Spectrum Disorders, ASD, among parents, policy makers, researchers, health professionals, health educators and individuals with ASD. This work will be accomplished through a national on-line survey, a national conference in fall 2009, and by further updating the Canadian Autism Intervention Research Network website, which is the primary bilingual source for disseminating evidence-based information about ASD in Canada. In fiscal year 2009-10, CIHR has currently committed approximately $3.4 million towards autism research.

[Barbara Rodrigues]

Very good letter Tony – really says it all and points to the very real future we all may be facing and sadly brings back rotten memories of that time so long ago. Thanks for sharing that.

Barbara Rodrigues

[Author]

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