Autism Reality

Shawn Murphy Motion – Amend Canada Health Act to Cover Autism Treatment

The autism community in Canada has a new hero – Charlottetown MP Shawn Murphy has a private member’s bill before Parliament seeking to amend the National Health Act to provide coverage for autism treatment regardless of where one resides in Canada. Many in the autism community have sought exactly this relief but whether it can survive opposition from the Bloc and the Progressive Conservative Party is the question. Even the very carefully crafted and amended National Autism Strategy motion put forward by MP Andy Scott, seconded by MP Peter Stoffer, met with Bloc resistance in the debates on that motion. And the Conservative government has previously indicated its opposition to what it considers intrusion on provincial jurisdiction. The Murphy motion though is exactly what real leaders in the autism community have fought for over the past several years. Whatever happens with Mr. Murphy’s motion it is encouraging to see champions speaking out in the House of Commons on behalf of autistic persons.

http://www.cbc.ca/health/story/2006/11/29/autism-strategy.html

Charlottetown MP calls for national autism strategy

Last Updated: Wednesday, November 29, 2006 | 3:26 PM ET

Recent federal initiatives to help people cope with autism don’t go far enough, says a Charlottetown MP behind a private member’s bill that calls for a national strategy on the neurological disorder.

‘A little bit for research, a little bit on surveillance, but nothing else.’— MP Shawn Murphy

The Nov. 21 announcement by federal Health Minister Tony Clement provided $800,000 for research and education, including a new research chair, an autism symposium and an autism page on the Health Canada website.

But Charlottetown MP Shawn Murphy, a Liberal, said the federal Tories need to do more to provide more equal levels of care across the country.

Shawn Murphy says the government's program is 'very limited.'Shawn Murphy says the government’s program is ‘very limited.’

Murphy has a private member’s bill that will be debated next week in the House of Commons that calls for a national autism strategy with health care coverage for autism treatment and therapies.

“There has to be a national strategy,” said Murphy.

“Right now we have tremendous differences between what is offered in British Columbia, what is offered in Alberta and Ontario and what is offered in some of the Atlantic regions.”

Murphy said there shouldn’t be that kind of variation to treat a common neurological disorder. In fact, autism rates are on the rise in Canada, affecting an estimated 150,000 children.

“It’s mind-boggling, the difference. This is a health issue. It’s not a social services issue. It’s a health issue. And it should be treated as such under the Canada Health Act.”

Autism activists were unimpressed with the initiatives announced by Clement, saying there are lots of good internet resources on autism. They said more money is needed for therapies already known to be effective.

“It’s a very limited announcement. A little bit for research, a little bit on surveillance, but nothing else,” said Murphy.

Autism therapy can cost $60,000 a year, but activists argue that is infinitely less than the cost of leaving people untreated, which can lead to institutionalization for the autistic person and cause families to break apart under the stress of raising an autistic child.

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November 30, 2006 Posted by | Uncategorized | 1 Comment

House of Commons Debate National Autism Strategy Nov 27 06

More history was made yesterday, November 27 2006, with the amendment of M-172 and subsequent discussion of a National Autism Strategy:

House of Commons Debates


VOLUME 141
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NUMBER 087
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1st SESSION
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39th PARLIAMENT

OFFICIAL REPORT (HANSARD)

Monday, November 27, 2006

Speaker: The Honourable Peter Milliken

The House met at 11 a.m.

Prayers



PRIVATE MEMBERS’ BUSINESS +

[Private Members’ Business]

* * *

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[English]

Autism Spectrum Disorder +

The House resumed from October 27 consideration of the motion.

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Mr. Speaker, I appreciate the opportunity to complete my thoughts on Motion No. 172 addressing a national autism strategy.

There is no doubt that autism spectrum disorders have an enormous impact on affected families. As the parents of individuals with autism spectrum disorders have attested, the impact is often discouraging, both financially and emotionally.

As the member from the Lower Mainland of British Columbia, I have been hearing from constituents on this issue for some time now. I have heard from many parents who are concerned for their children’s future and who are concerned about accessing appropriate treatment and therapy.

The primary concern many parents in B.C. have is the level of funding they receive for treatment. Currently, the Province of British Columbia pays up to $20,000 annually for treatment for children up to age six. It pays $6,000 annually for treatment of children six years of age and older.

However, depending on the amount of treatment an autistic child needs, some parents find themselves paying much more than the $20,000 maximum the province currently covers. These parents look around and see some provinces, such as Alberta, covering the full cost of treatment. Other provinces address autism as a component of their public education systems, again, without imposing a financial burden on parents.

As such, many parents in my province have lobbied the B.C. government for additional funding. They have also gone to court to try to obtain more provincial funding.

Late in 2004, the Supreme Court of Canada addressed this issue in its unanimous ruling in the Auton decision. The chief justice, writing for the court, determined:

–the legislature is under no obligation to create a particular benefit. It is free to target the social programs it wishes to fund as a matter of public policy, provided the benefit itself is not conferred in a discriminatory manner.

The Supreme Court also found that funding for ABA or IBI treatment was not required under the provisions of the Canada Health Act. As such, the provinces are exclusively responsible for deciding on the level of funding they will provide for autism treatment.

Of course, parents with autistic children are not so much concerned with questions of legal obligation on the part of the provincial governments as they are with the question of whether their children are getting the held they need.

Motion No. 172 is important because it gives federal representatives an opportunity to consider and debate the contribution we can make to help families affected by autism. In doing so, our new Conservative government will continue to respect the jurisdiction of the provinces to make health care funding decisions. We will also continue to respect the judgment of the Supreme Court.

However, it is clear that even though the primary responsibility for funding treatment is an exclusive provincial responsibility, there are ways that our new Conservative government can, and already does, help.

First, our government provides general funding to the provinces and territories through the Canada health transfer for the provision of health services. This year we are providing nearly $20.1 billion exclusively for health care, $1.1 billion more than last year. Our budget commits to increasing that amount by 6% per year. Next year the provinces can count on $21.3 billion and, the year following, $22.6 billion.

Also, our new government gives families affected by autism direct financial support through the tax system. In budget 2006, our new government included a number of measures that either were proposed by the technical advisory committee on tax measures for persons with disabilities or that even go beyond its recommendations.

Among these measures were: increasing the maximum annual child disability benefit, effective July 2006; extending eligibility for the child disability benefit to middle and higher income families caring for a child who meets the disability criteria, effective July 2006; and, boosting the maximum amount of the refundable medical expense supplement.

While direct assistance for families is important, the federal government also plays a key role in medical research.

The search for a deeper knowledge into the causes of autism and for better treatments is an area where our new Conservative government believes it can make a meaningful contribution. For instance, the Public Health Agency of Canada funds Centres of Excellence for Children’s Well-Being, two of which are doing important work on autism spectrum disorders.

We realize we can do more, which is why last Tuesday the Minister of Health announced some very important initiatives. These initiatives include: first, funding for a new research chair into the causes and treatment of autism; second, consultations leading to a national autism surveillance program; third, a stakeholder symposium to be held in 2007; fourth, a new Health Canada website focused on autism related information; and fifth, leadership by Health Canada in coordinating our government’s response to autism related issues.

Families in my community and across Canada have been waiting a long time for a comprehensive federal response to the challenges posed by autism. I believe the leadership our government has shown in the past week will make a significant difference in the effort to better understand and treat autism.

Therefore, I would like to present an amendment to my hon. colleague’s Motion No. 172. This amendment would further reinforce our government’s commitment to build a strong, national strategy for autism spectrum disorders.

I move:

That, Motion No. 172 be amended by deleting all the words after the word “include”, and substituting the following:

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

(b) the 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 disorder;

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

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It is my duty to inform hon. members that pursuant to Standing Order 93(3) no amendment may be proposed to a private member’s motion or to the motion for second reading of a private member’s bill unless the sponsor of the item indicates his or her consent. Therefore, I ask the hon. member for Fredericton if he consents to this amendment being moved.

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I do, Mr. Speaker.

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There is consent.

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Mr. Speaker, what just happened in the House is extremely significant. It extends to the whole House an opportunity to embrace a subject matter that is substantively to adopt a national strategy to address autism.

The member for Fredericton has been a champion on this file for a long period of time. I have known him since 1993 and I and many of his peers and many Canadians have come to know that when he champions an issue we can be assured that he will give it due diligence and his full attention. I know he has worked very hard with Autism Canada as well as with other NGOs who have been working so hard to get recognition here.

I take what has happened as a sign that the House will strongly support this resolution in principle to adopt or develop a national strategy to address autism. The member should be very proud of having brought this to the attention of the House and to have earned the respect and the support of the House in terms of taking this one step further.

I was here to speak on behalf of the resolution but the resolution has changed somewhat. However, the spirit of the resolution is still there.

What I thought I might do in lieu of that is to remind all hon. members, and those who happen to be watching the proceedings or who may read them in Hansard later on, a little about autism. As public education is a very important part of resolving social problems, I will briefly outline the characteristics of autism spectrum disorder.

Autism spectrum disorder is a complex biomedical condition that can affect the normal function of the gastrointestinal, immune, hepatic, endocrine and nervous systems. It impacts normal brain development, leaving most individuals with communication problems, difficulty with typical social interactions, prone to repeat specific patterns of behaviour and a markedly restricted repertoire of activity and interests.

Individuals on the autism spectrum tend to have varying degrees or a combination of symptoms and therefore the treatments will be as varied as the individuals. It shows that there is a difference in terms of maybe some of the other challenges that we face in terms of childhood diseases and issues such as autism. In fact, the research is actually trying to deal with a multiplicity of targets and it is very difficult.

In the early signs of autism, which become prevalent between the ages of 12 months and 24 months, a child may demonstrate only a few of the following symptoms.The child starts to develop language and then loses it or does not acquire language at all. The child may appear to be deaf or may respond unevenly or not to all sounds. It is sometimes difficult consoling the child during transitions, resulting in tantrums, which are a big challenge for parents. The child has difficulty sleeping or frequently awakens at night. The child does not point or look. The child fails to bond, reacts to vaccines, is on a self-restricted or selected diet, has limited imaginative play, has no interest in playing with other children, has chronic gastrointestinal problems and has repeated infections.

When we look at the list of the possibilities that a child may experience, one or several at any one point in time, it shows the enormous challenge that this presents to parents who are trying to provide that loving care to a child in desperate need of some help.

Individuals with autism do exhibit some strengths. Although some areas of development in a child are delayed, children with ASD often exhibit skills beyond their years in other areas.

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These intellectual strengths may overshadow the developmental problem experienced by the young child. These strengths may include one or more of the following. Their non-verbal reasoning skills may be better. Their reading skills may be very good. Their perceptual motor skills may also be positive, as may their drawing skills and computer interests and skills. They may have exceptional memory, visual and spatial abilities, and music skills. These are important. These children have various pockets of skill sets in areas in which they can perform, but like most children with childhood diseases, they have many challenges as well.

Although there are these exceptional skills, there also may be significant delays in other areas. I will give just a brief summary. There is going to be an impairment in social relationships. Children need to interact and they need to play. They need to learn from others’ experience and to have interpersonal relationships, but these children often demonstrate a lack of awareness and a lack of normal seeking of comfort when they are stressed, as well as abnormal toy play and an inability to form friendships. These are some of the things that may be observed in terms of social relationships.

There are deficits in communication and language and a lack of perseverance on interests and activities. They are not able to keep up that interest. When I see some of these, I also see some of the evidence of the symptoms of other childhood diseases. For instance, fetal alcohol spectrum disorder also has some very similar symptoms. There also may be a dependence on routine as well as abnormal responses to sensory stimulation, behavioural problems, variability in intellectual functioning, uneven developmental profiles, difficulties with sleeping, toileting and eating, immune regularities, nutritional deficiencies, and, of course, gastrointestinal problems.

These are the kinds of things that people should keep in mind. Many of us have received many communications from constituents all across the country who have asked parliamentarians to take a special interest in this autism spectrum of disorder. It is one that tugs at the heartstrings, but we should do things not because they tug at our heartstrings, but because they are right to do.

I believe that the good faith shown by all hon. members in the House in terms of making a concerted effort to ask the government to pursue a national strategy to address autism is an enormous step that we are taking. I again want to thank the member for Fredericton for his initiative and the leadership role he took to make sure that this will become a reality in this Parliament.

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Mr. Speaker, I am pleased to rise today and support the motion put forward by the hon. member for Fredericton.

There are a few points that I would like to make. Sometimes people do not think of these points unless they know families involved in this issue.

One of the things that was just said concerned the failure to bond. Any parent knows the great joy of coming into a room, having their child smile at them and put up his or her arms, wanting to be picked up and hugged. Parents recognize the fact that the child has bonded with them. I am thrilled and pleased to say that my 11 year old grandson still does that. It is very difficult and hurtful for a family if a child is not able to do that easily. Sometimes these children can do so with their parents, but often not with other people in their lives.

We need a national autism strategy. We are in the process of getting a national strategy for cancer, although one could say it is a health issue so therefore it is a provincial issue. We now have leadership on a national cancer strategy and we could have a national autism strategy, and part of this debate has been about whose responsibility this really is.

We know about early intervention leading to success no matter what challenge a child may have. The earlier we can identify that a child needs support and the earlier that appropriate support can be provided, at the right time and in the right way for that particular child, it is a thousandfold more likely that the child will be far more successful than he or she otherwise would have been. Because they have had early intervention, we see children who are now in the regular school system and we see children graduating from high school.

As with any other challenge a child faces, autism has a variety of effects. Some children, with early intervention, will do very well. In particular, children with Asperger’s will go to school and participate with their classmates. They may have a challenge when it is a bit unstructured, but they will do very well.

Some children will always need ongoing support in a significant way. If we do not do that, if we do not pay for the cost of a national strategy, the costs that we will pay down the road in health care, in the education system, in foster care and in group home support are going to grow at a rate that I cannot even imagine. This is why I am a bit worried about the amendment. It does not talk about those nice parts, about what the strategy should do.

We do pay for treatment for people in Canada, and while I will admit that the numbers are not large, these people are on drugs that cost the taxpayer $90,000 to $100,000 a year. Without those drugs, those people would not be able to function. We spend that much money on these other people to enable them to be the best they can be during their growth. Therefore, I think the economic argument fails. If people have no moral support for this, then the economic argument should move them. I hope both would.

We are seeing increased numbers in regard to autism now. I am not sure that we know all the reasons for the increase. They are increasing dramatically, more in some places than in others. Sometimes we see more than one child in a family being affected. We have not figured out all of the pieces, which is certainly why research is so important, but the research may not be available to us for five or ten years. I do not know. I have no idea how long it will take.

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However, I do know that today there are parents at home who cannot leave their home because they cannot find someone to care for their child. If someone says to them that there is a great movie on and they should go to see it, they cannot, because they cannot get a babysitter who is able to meet the needs of their child. Their world becomes quite insular, although they do amazing things. They were on the steps of the legislature and they were out advocating to every MP, MLA and municipal councillor, every place they could, and they have been doing so for some time.

They manage to do that, but they do it against such odds that I do not know if all of us would be able to do it. If we can support the needs of children with autism, not just with our good feelings or a strategy, but also with financial resources, then we help not only the child with autism, although that is the first and most important thing, we also help their brothers and sisters, because their brothers and sisters may then have a little more time with mom and dad.

Moms and dads have to spend a lot of time with their children who have autism, particularly if they are children who may not yet be able to go to the bathroom independently or feed themselves independently or even tolerate the feeling of most foods in their mouth because of their tactile defensiveness. So this support is not just for the child; it is for their moms, their dads, their grandparents and their siblings. They will all benefit from our ability to support families not just with a national strategy, which I do support, but also with financing.

There is another thing I would say about a national strategy. When we talk about children with autism, because we have been talking about it for 10 years, 12 years or 15 years at the most, we talk about children, and that is where we focus, but we need a national strategy that looks beyond when they are 12 months old, 2 years or 5 years of age, or in elementary school or high school. How do we get past that early age and successfully into the teenage years, which are even more difficult for any child with a challenge, and then into adulthood? These are children who will be adults in our communities and they need support. We need to look at that strategy about the kind of support or kinds of resources that will be needed, not just for them as children but lifelong.

As somebody who has worked with people with disabilities for 40 years now, I can say that if we do not do this for children with autism, if we do not do something now and those children and adults are not in our community, we lose too, because they bring something to us. It is not just about us giving. They bring their special gifts and talents into our community, so we lose if we do not provide support.

There are many families looking at us to see what will happen with this motion. I hope that every member of the House will be able to support this strategy but I hope too that members understand when they support it that it is not only a strategy; it is a strategy with the pieces that were in the original motion, which I have to say I liked better.

If the member who proposed it agrees, then so be it, but the fact is that it will take funding for related services. It will be in cooperation with provincial governments that will have a surveillance program and that right now are probably desperate because we are seeing such increasing numbers of children with autism. The numbers are increasing in ways that I cannot imagine with any other kind of health or disability issue. Without proper surveillance and research, we will have no idea of how to stop this increase in numbers or about what it is in our environment that is causing this and then causing us to see it in a second child in the family.

I would hope that supporting the national autism strategy will also mean that people understand that what goes with that support is the costing for treatment, education, professional training and support for the parents.

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Mr. Speaker, I dedicate this speech to someone who has more impact on people than most of us could ever dream. As amazing as it may sound, he is an individual who does not have a mean bone in his body. He is incapable of hate. He is incredibly intelligent and never says anything he later regrets. He has taught me more about myself than I ever imagined there was to know, and he is only 11 years old. He is my son, Jaden, and he has autism.

Today I am not going to give the definition of autism. Members can look that up along with enough stats to make their heads spin. Instead, I want to share the story of our family’s initial experiences and in my last few minutes relate them to the motion before us.

Before I do that, however, I want to commend the member for Fredericton for introducing a motion that goes beyond the political games we often see when we talk about autism in the House. His motion is actually designed to accomplish something for families and individuals affected by autism. I am thankful that we have been able to work together to come up with amended wording that we can all support.

To that end, I also want to thank the health minister and the parliamentary secretary for health for putting aside partisanship and finding common ground on which we can agree. I was particularly pleased to see the health minister begin to take action in the spirit behind this motion with his announcements last week.

Eleven years ago today I was 26 years old. I had been married for two and a half years and had a three week old baby boy. We named him Jaden, which means God has heard, something we did not know at the time, but which has tremendous meaning to us now. Jaden is almost completely non-verbal. He uses a special computer and sometimes a pen and paper to communicate.

However, going back to my three and a half week old son, like many new Canadian dads I had a clear vision for his future. It was certain that Jaden was destined for the NHL. I had it all planned out. I would not be a pushy father like Walter Gretzky. I would build a rink in my backyard upon which I would invent the most ingenious and fun drills that Jaden would enjoy for hours upon hours every day. When Jaden was not playing hockey, he would be studying hard to maintain his A-plus average.

As time went on during Jaden’s first year or so, my wife Debi and I saw nothing to indicate that my carefully crafted plans were anything but on track. He was a very good baby and around the time he was one he seemed to be developing some typical first words, “dada, momma, bye-bye”.

Between 18 months and 2 years old Jaden started doing some pretty amazing things. Like just about every kid his age, he had one of those foam alphabets that fit inside a foam frame. One day on a whim Debi took the frame away and left him with just a jumbled pile of letters. Jaden proceeded to put the letters in order just as fast as we would do it the very first time.

Then to our amazement, a friend of ours mixed up the letters in a pile and put out the letter Z. Jaden, without missing a beat, put the letters in reverse order Z, Y, X, W, V and so on just as fast as he had done forward.

As amazing as things like this were, during his second year we started to notice some other things that caused us some concern regarding Jaden’s development. He was extremely content playing on his own with little or no interest in playing with other kids or interacting with adults. His speech was not really developing beyond the first initial few sounds and he was very focused on patterns, often spending an inordinate amount of time lining up his videos or stacking cups in perfect order. He paid little attention when we tried to talk to him or play with him. We would have thought he had a hearing impairment except for the fact that if he heard a video he liked start up in another room at very low volume, he would instantly stop what he was doing and go to watch it.

Debi brought up our concerns to Jaden’s pediatrician at his 18 month check-up, a very well regarded pediatrician. She did not see overly concerned and suggested that some children, especially boys, simply developed their speech later than others. Debi filled out speech assessment forms with public health and she and I started attending classes to learn how to help him work on his speech.

During the summer of 1997, when Jaden was about 21 months old, we were at a family wedding when one of my cousins mentioned autism as a possibility. Debi and I had both heard the term autism, but we knew very little as to what it meant. We assumed that if this was what he had, surely his doctor would have recognized it.

Three months later at Jaden’s two year old check-up, his pediatrician finally brought up autism as a possibility and put us on a six month waiting list to see a specialist in Edmonton. Shortly afterwards, we came across a book that changed our lives forever. Let Me Hear Your Voice by Catherine Maurice. My mom received it from a friend. After reading just a few chapters, she called us to tell us we had to read it.

It is the story of a mother whose two children have autism and undergo a form of therapy that helped them to overcome it. We now know the therapy as applied behavioural analysis or ABA. Sometimes it is referred to as intense behavioural intervention, IBI, but they are the same thing. As we read her description of her own son as a toddler she could have been describing Jaden word for word.

By the end of one evening with that book, we knew, with absolute certainty, that our son had autism. We had a pretty good idea what we needed to do about it. We just did not know yet how complicated and frustrating the steps were in between.

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Beginning the next day, Debi started making phone calls throughout North America to find out more about ABA and what we needed to do to get started. We learned that the therapy was going to be expensive. Even then, we were looking at between $50,000 and $60,000 a year. At that time, I was making probably between $35,000 and $40,000, so the numbers did not add up.

We learned we needed to start as soon as possible, as the research showed the treatment had more effect the earlier it was started. We also learned there was a significant battle going on between parents of children with autism and provincial governments across the country over the funding of ABA therapy.

In 1997-98, in Alberta, the financial picture was not as rosy as it is today. As in other provinces, a dedicated group of parents had recently taken the Government of Alberta to court and won the right to have ABA funded. However, unlike other provinces, the Alberta government made a choice not to appeal the court decision, I believe, due to the conviction and leadership of a few key ministers. This must have been a difficult decision, given the dollars involved at the time, the questions surrounding ABA and the mystery of autism in general.

Despite these considerations, the province decided that autism and the families affected by it were a priority, and it has shown leadership in this area ever since.

Returning to Jaden, from November to April 1998 was a very frustrating time for us. We knew Jaden had autism, but we had to wait six months for an appointment to get the diagnosis, which we needed to access funding.

As for the funding, the practice of the government in those early months was to automatically reject everyone and then make them go through a rather stressful appeal process. Since we were not certain we would receive funding, we did what many parents across the country still do in the same situation today. We had no choice. We started making arrangements for the program and then lined up a loan to cover the costs.

Fortunately, at the same time that we were getting organized, the group of parents that had taken the government to court in the first place kept the pressure on. Shortly before our ABA program was set to start, we got word from Handicapped Children’s Services, in Alberta, that we would not have to go through our appeal and that we would be funded 95% of the cost of our approximately $60,000 program for the first year.

Time does not allow me to go into all the intricacies of Jaden’s program. It has evolved over the years as the government in Alberta has fine-tuned the process. Parents no longer have to pay for a percentage of the program. Jaden’s situation is now monitored by a multidisciplinary team on an annual basis to determine what his needs are and this helps to determine what the budget for his specific program will be. Since he is in school full time, his ABA time has been cut down significantly, to 10 hours to week from the 40 in the beginning. However, he receives some additional funding for things like occupational therapy and speech because of the multidisciplinary team approach.

Most important, there is no question in our minds that Jaden’s life is better now because the province of Alberta made some courageous decisions almost a decade ago. The fact remains that where Alberta showed leadership and made autism treatment a priority, other provinces have not. That is why this motion is so important.

In my view, the preamble to the amended motion, which talks about a national strategy for ASD, is the most important part. It is obvious, for whatever reason, that the provinces are not taking appropriate action on this issue. To understand this, in part, one only needs to look at what has happened in Alberta over recent years. Because we have the programs in place, families have been moving there in droves to avoid taking out massive lines of credit or remortgaging their homes.

If, for example, P.E.I. were to decide to properly fund ABA without other maritime provinces doing the same, it would probably overwhelmed by the influx of families moving there from surrounding provinces to get the treatment. The same rationale could be applied across the country.

For this, and many other reasons, we need to approach the issue at the national level, with the federal government playing a key role in coordination and facilitation. Everything else that follows in the amended motion is placed in the context of that national strategy. The wording throughout the motion rightly refers to cooperation and consultation with the provincial and territorial governments, which is where the responsibility for the delivery of treatment, the main area of contention in recent years, lies.

The first clause refers to the development of evidence based standards for diagnosis and treatment. The diagnosis part of this hits home with me. In retrospect, I think Jaden could have been diagnosed as early as 18 months of age, almost 14 months before his program started.

As for evidence based treatment standards, I believe we are beyond the point where there is any debate that ABA works for most kids with ASD. However, we need to learn more about the long term effectiveness of the treatment, how and when to withdraw it when a child has reached the stage where he is “indistinguishable from his peers”, and whether there are better alternatives for some individuals, for example, adults with ASD.

In regard to the development of innovative funding methods for care, we have talked a lot about children and ABA. I want to point out that thousands of adults in Canada require some form of treatment as well. Any discussion of care and treatment must not forget them.

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In terms of surveillance, there is some question as to whether autism is becoming more prevalent. We need to find out if this is the case or if we have become better at recognizing it. We also need to look at the question of whether autism is more prevalent in certain areas of the country and if so, why.

Finally, on the research end, Canada is doing some amazing things with genetic research in connection with autism. While parents rightfully demand more than just research, this area is crucial to a national strategy as we try to ensure that both levels of government get maximum value for money on an ongoing basis.

I wish to reiterate my obvious support for this motion, as amended, and to give my thanks to all members who will be supporting it. What happened here today and what will happen when we vote on this is extremely important for my family and for all Canadian families who deal with autism every day of their lives.

I look forward to working with our health minister and members from all parties in the House to make Canada’s national autism strategy a reality.

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Mr. Speaker, I speak today in support of Motion No. 172 as the House has accepted the amendments just moved by the member for South Surrey—White Rock—Cloverdale.

I would like to say how moving the words were from my colleague who just spoke. Talking about his son, and the joy and happiness his son has given him, his family and the people who know Jaden speaks to why we have all worked together in the House to bring forward this amended motion.

Motion No. 172 will pave a path to a better understanding of autism spectrum disorder or ASD. I want to begin by saying to all Canadians with ASD, their families and so many tireless activists, that this motion is far from marking an end point. I say this because initiatives in this motion call for a will to bolster Canadian research capabilities and, therefore, our overall knowledge of ASD.

For far too long Canadians with ASD and their families have been trapped in the dark. Today there is still so much we do not know. With knowledge, however, comes light. With greater knowledge, the more informed and effective future actions will be from the government, provinces, territories and stakeholders. In turn, more help will be provided to Canadians with ASD and their families.

I have worked in cooperation with the members for Fredericton and Sackville—Eastern Shore. We have taken action that crosses party lines for the good of thousands of Canadians and I am asking my fellow members to support this motion for the same reason.

Above all, this amended motion, if accepted, calls on the federal government to do what it can within its jurisdiction to lay the foundation of hope for all Canadians affected by ASD. It commits the federal government to launch a consultation on implementing a national surveillance program and calls on the government to provide additional support for research and to develop evidence based standards for diagnosing ASD. Finally, it recommends that the government work with the provinces to develop innovative funding methods to help Canadians care for their loved ones who have ASD.

This motion is consistent with the action and leadership that the health minister announced just last week. It includes a research chair that will focus on effective treatment and intervention for autism, a national symposium on autism that will be held in the spring of 2007, and a program on ASD that will be conducted by the appropriate branch of government.

A web page on autism has now been added to the Health Canada website. This web page will facilitate access to public information related to ASD. Finally, the minister also indicated that the health policy branch of Health Canada will be responsible in the future for the coordination of policy and program activities at the health portfolio level.

It is safe to say that I am not alone in hearing about the challenges posed by ASD from individuals and their families in my riding. The challenges range all the way from financial to emotional and the collective toll is enormous.

Canadians with ASD and their families deserve action. The motion before the House gives members the chance to take action. In supporting this motion, members can raise their voices in favour of laying the foundation we need for informed, effective future action. By supporting this motion members can further fuel our research down a path which may lead to finding the causes of ASD.

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In conclusion, I want to add that this motion derives directly from parliamentarians successfully setting aside partisanship to help those in greatest need.

It is issues like this which attracted me to politics in the first place. I never planned to be a politician. I wanted to be an engineer like my father, grandfather and great-grandfather, and I actually became one. I worked in gold mines, but after my accident, a collision with a moose, I realized that my career as an engineer would be impossible. I had to make different choices.

It was after my accident that I realized that in our society we have a contradiction. We can and do invest enormously in treating illnesses, injuries and conditions like ASD, but then we do not invest enough in pursuing the actual causes or trying to ensure that these same individuals can live meaningful and dignified lives.

Canadians expect that everyone should have the opportunity to live the Canadian dream. This is a point related to public health and public policy that I have raised whenever I can, and in fact, it is this contradiction that has brought me to public life in the first place.

On a day like today, when this House has an opportunity to increase support for research to learn more about the causes of ASD, where we can all put up our hands to lay the foundation for helping individuals and families in need, and when partisan politics are bowed to spur public policy with principle and purpose, it makes me proud to be a parliamentarian, and I think we are all proud today to be here.

This is the right decision. I would like to urge my fellow colleagues to support this motion before the House.

I understand there is an objection from one party because of the word “national” in the motion. This House should always put Canadians first, regardless of the province they may come from because we are here together. As Canadians, it is our role to work together for the common good. This motion is an example of how Canada works well, and I am proud to be a Canadian.

next intervention previous intervention [Table of Contents]

Mr. Speaker, I am pleased today to join colleagues on all sides of the House and speak in support of Motion No. 172.

The issue of autism spectrum disorder is indeed an urgent problem that we all have to face. In the past six years the number of children with ASD has grown by more than 150%. While I stand here today in Ottawa in the House of Commons my mind goes back to my home province of Newfoundland and Labrador and indeed my own riding, where a few years ago I had the opportunity to meet a young boy by the name of Craig Walsh in a community called North Harbour in St. Mary’s Bay in my riding.

Craig suffers from autism and he certainly opened my eyes to the challenges that he faces as a young person in society. He also opened my eyes to the challenges that his parents face and the community as a whole.

The reason we are here today and have the motion before us encompasses all those aspects of autism. Motion No. 172 addresses the concerns of the children themselves and hopefully the health care that is needed will be provided. It raises the concerns of the parents. As speakers before me have touched on here this morning, it raises how important it is that we as parliamentarians support the efforts of the parents of autistic children.

We stand here shoulder to shoulder giving the parents the tools and the research that they will need and indeed anything that we can do to make their life somewhat easier. We must also realize that their children too are an important part of our society. Their children need whatever we as parliamentarians can put forward. That is what we look forward to doing here today.

The fact that we are discussing this important topic in the House also gives us an opportunity to put autism on the front burner in the minds of Canadians from coast to coast. We have to address the concerns that Canadians have and also let the communities understand the importance of providing the proper assistance, funding and mechanisms that these children need and that these families need to address this very important concern.

It is estimated that anywhere from one out of 165 to one out of 200 children are now affected by autism and the numbers are growing. Autism spectrum disorders affect people in different ways and cause serious developmental disabilities in affected individuals and can affect all aspects of development. Each person with ASD will have different abilities, with symptoms ranging from mild to severe. Severe symptoms, such as compulsive behaviour and speech disorders can lead to isolation from friends, family and the community.

I congratulate the member for Fredericton for putting this motion forward. I have followed his work over the past couple of years. As previous members have said, this is not about politics. This is about children and their families. I congratulate the member for putting forward this motion and for giving us an opportunity to stand shoulder to shoulder in support of this very important aspect of life in Canada today.

I mentioned the isolation from friends, family and community. As we go through our daily lives, healthy and secure, we are always concerned about isolation ourselves from time to time. When I arrived in Ottawa less than a year ago to a much larger political atmosphere than I was used to in Newfoundland and Labrador, I was concerned about isolation. We have all the ingredients here to learn from each other and become educated.

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Then we look at the children who are afflicted with autism and we wonder about the isolation they suffer. We wonder about the isolation that their parents experience. We can assist today and begin down the road to making sure that these children and their families become inclusive in our communities, our schools and indeed, society as a whole.

Canadian families with children diagnosed with autism spectrum disorders face serious challenges. They face the challenges of their child’s development, behavioural issues and getting a clear diagnosis. I mentioned the young boy from Newfoundland, Craig Walsh. I have talked to his mom, Sherry, on several occasions about the diagnosis of children and the access to professional assistance. I certainly heard from that mother about her concern not only for her own child, but indeed, all children with autism. Professional assistance is what they ask for. I hope through Motion No. 172 that professional assistance will be on the way.

The cost of therapy and other services is an important issue, especially to parents of children with autism. I have heard the concern raised by parents back home about the fairness of making sure that these professional services, therapy and any other services are available to each and every child and that each and every child has the opportunity to avail himself or herself of those services.

The amended motion recognizes the challenges that many families face and suggests a comprehensive approach to addressing their needs. Once again, I am delighted that the member for Fredericton has accepted the amendments to the motion.

On November 21 the hon. Minister of Health announced a package of initiatives to improve knowledge and research on ASDs and to help children and families. In addition to the measures already undertaken, the federal government intends to sponsor an ASD stakeholders’ symposium in 2007 to further the development of ASD knowledge and dissemination of information among health care professionals, researchers, community groups, teachers, individuals and family members.

The federal government intends to begin exploring the establishment of a research chair focusing on effective treatment and intervention for ASD. The federal government intends to launch a consultation process on the feasibility of studying and developing an ASD surveillance program through the Public Health Agency of Canada to help shape appropriate ASD programming and research.

We also intend to create a dedicated page on the Health Canada website to guide the public to ASD information. We also plan, with the help of the policy branch of Health Canada, to coordinate all actions related to ASD taken by the health portfolio in the future.

It is important that Canadians be educated about autism. It is important that we understand the concerns of parents, caregivers and health care professionals themselves. Just a few moments ago teachers were mentioned. I realize the challenges in the schools system. Hopefully, by our actions here today through Motion No. 172 we can begin to address some of these concerns.

There is no doubt that we all feel concerns for–

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next intervention previous intervention [Table of Contents]

Order. I am sorry to interrupt the hon. member, but the time has come for the hon. member for Fredericton to provide his five minute summation of the debate.

next intervention previous intervention [Table of Contents]

Mr. Speaker, let me first thank the government for moving the amendment which allows the government to support the motion. I would like to thank the member for South Surrey—White Rock—Cloverdale for moving the amendment. I would like to thank the Minister of Health, the Parliamentary Secretary to the Minister of Health, and the House leader as well.

I want to particularly mention the member for Edmonton—Mill Woods—Beaumont and say hi to Jaden who I am sure is watching. The intervention by the member as a parent was a very appropriate way to focus on this issue and it is much appreciated.

I want to reassure the member for Surrey North that the amendment in fact captures the spirit of the original motion, specifically that there be a national strategy and that the strategy involve evidence based standards, funding, surveillance and research. All of those elements are there. They are not nearly as prescriptive as they were in the original motion and that was what was necessary to give the government the latitude to do it in a way that it sees fit. All of the elements of the original motion are there. We will hold the government’s feet to the fire to make sure it is done in the spirit in which it was intended.

The ultimate objective is that Canadian families with autism have access to the appropriate intervention regardless of their means and it means something covered under a public health insurance program and is usually referred to as covered under medicare. We understand that the jurisdictional issue is difficult, but we cannot allow the difficulty of that jurisdictional issue to stop us from doing what we know is right. It is appropriate for the federal government to show leadership, but it cannot be for the federal government to do alone.

I want to thank the families, parents, kids and adults who have written, called and emailed their support and the organizations across the country which have done the same. I want to thank a teacher at Leo Hayes High School in Fredericton, Greg Peters. He suggested to me last spring when I advised them that we were doing this that he wanted his class to participate in this exercise. It was remarkable to see students in a grade 12 class in a Fredericton high school give their spring to this issue. They were involved in workshopping it, bringing in people who work for the province of New Brunswick as drafters, parents, scientists and so on.

At Leo Hayes High School, Greg Peters and his two classes worked all last spring on this motion. After they graduated, in September when the kids returned to school the previous class instructed the new class on how to carry the ball. I am sure all members of Parliament have heard from Leo Hayes. As a Frederictonian I am very proud of them.

I also want to make another point. Some of the interventions we have all received speak to the challenge of finding a balance between identifying the value in the family members so that when we talk about intervention it takes nothing away from the human beings that we love just as they are, special, remarkable people. It has nothing to do with that. It has everything to do with people having the most options possible in their lives. It is a collective responsibility to provide that.

I would like to thank all colleagues who have worked diligently on this issue. The member of Parliament for Sackville—Eastern Shore participated in the negotiations with the Parliamentary Secretary to the Minister of Health, with the member for Edmonton—Mill Woods—Beaumont, with the member for West Vancouver—Sunshine Coast—Sea to Sky Country and the member for South Surrey—White Rock—Cloverdale in this exercise. This has been a non-partisan, parliamentary initiative to do the right thing by a large number of Canadians.

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It is a challenging file. There are jurisdictional issues which perhaps would get in the way of anybody taking responsibility to do the right thing. I do not think it would become us as parliamentarians to let those jurisdictional challenges stop us from doing what we know is right. We cannot let those difficulties get in our way. By doing what is right, Canada will be better for it, our consciences will be better for it, and a lot of Canadians will be better for it.

[Translation]

next intervention previous intervention [Table of Contents]

It being 12:03 p.m., the time provided for this debate has now expired.

[English]

The question is on the amendment. Is it the pleasure of the House to adopt the amendment?

Some hon. members: Agreed.

Some hon. members: No.

The Deputy Speaker: All those in favour of the amendment will please say yea.

Some hon. members: Yea.

The Deputy Speaker: All those opposed will please say nay.

Some hon. members: Nay.

The Deputy Speaker: In my opinion the yeas have it.

And five or more members having risen:

The Deputy Speaker: Pursuant to an order made on Friday, November 24 the vote stands deferred until Tuesday, December 5 at the expiry of the time provided for oral questions.

November 28, 2006 Posted by | Uncategorized | Leave a comment

Conservatives Will Support Amended Motion for a National Autism Strategy

It appears that I owe the Harper Conservatives an apology; that I might have been overly harsh on them in earlier comments about their rejection of a National Autism Strategy. It now looks like the Conservatives are in agreement with an amended motion for an NAS, one which should pass the vote with all parties except the Bloc supporting the motion as amended.

http://www.canadaeast.com/dg/news/article.php?articleID=72883

Father of autistic child satisfied with plan

OTTAWA – Brian Rimpilainen watched from the galleries of the House of Commons on Monday as Parliamentarians found a compromise on a national strategy on autism that the governing Conservatives, Liberals and New Democrats could support.

Rimpilainen, a Fredericton man whose eight-year-old son, Logan, has autism, said he was satisfied with the outcome of the debate even if the compromise motion is less robust than the original one put forward by Fredericton Liberal MP Andy Scott.

“It is good to see it moving forward,” he said.

The debate was unusual in that it showed Parliamentarians working together instead of fighting, and that the MPs who addressed it told emotional personal stories. The vote on the motion will be held Dec. 5.

The only party opposing it is the Bloc Quebecois because it treads into provincial jurisdiction.

Speaking at the end of the debate, Scott said he would have preferred his original motion but that in the interests of getting government support it was acceptable to water it down.

“The amendment in fact captures the spirit of the original motion,” he said, noting that the four elements are still there: a national strategy based on national standards, funding, surveillance and research.

The amendment stressed that the objectives would be achieved “in cooperation with the provinces,” a key caveat that allowed the federal government to support the motion.

“All those elements are there. They are not nearly as prescriptive as they were in the original motion and that was necessary to get the government to do it in a way it sees fit, but all the elements of the original motion are there and we will hold the government’s feet to the fire to make sure it is done in the spirit in which it was intended.”

Scott said he had support from the New Brunswick Autism Society for the amended motion, and had been working with Leo Hayes high school where the autism motion has been a class project.

During the debate, Alberta Conservative Mike Lake told his story about his 11-year-old son Jaden who has autism.

When Jaden was 21-months-old, they began to suspect he had autism.

“We knew that therapy was going to be expensive. Even then we were looking at between $50,000 and $60,000 a year. At that time, I was making probably between $35,000 and $40,000 so the numbers did not really add up,” he said.

Lake added that he was lucky because around that time Alberta decided to fund the expensive, 40-hours-a-week, one-on-one therapy that many consider necessary to break through the isolation that people with autism suffer from.

New Brunswick covers the treatment but only until the age of six, while in Alberta it is until the age of 18.

“The fact remains that where Alberta showed leadership and made autism treatment a priority, other provinces have not. That is why this motion is so important,” Lake said.

He credits the treatment for the progress Jaden has shown. He is now in school.

Steven Fletcher, the parliamentary secretary to the minister of health, also spoke to the motion. A quadriplegic due to an automobile accident, Fletcher had worked with Scott to find a compromise.

“It is issues like this which attracted me to politics in the first place. I never planned to be a politician. I wanted to be an engineer like my father, grandfather and great-grandfather, and I actually became one. I worked in the gold mines, but after my accident, a collision with a moose, I realized that my career as an engineer would be impossible. I had to make different choices,” Fletcher said.

“It was after my accident that I realized that in our society we have a contradiction.”

Canada treats illness but doesn’t invest enough in ensuring that disabled people can live “meaningful and dignified” lives, he said.

“Canadians expect that everyone should have the opportunity to live the Canadian dream,” Fletcher said, turning his wheelchair to face the Bloc MPs.

“This is the right decision “… I understand there is an objection from one party because of the word ‘national’ in the motion. The House should always put Canadians first, regardless of the province they may come from.”

Outside the Commons, Fletcher said the government began to address autism last week when Health Minister Tony Clement announced some funding for research, and the final public policy will include “innovative funding methods” for families.

Fletcher said the research will answer questions such as why autism is increasing and whether intense therapy is the best treatment, adding that the provinces have to be involved because health care in a provincial jurisdiction.

Also outside the Commons, Scott said the government must come up with a strategy before the next federal election.

November 28, 2006 Posted by | Uncategorized | Leave a comment

Brian Rimpilainen Off to Ottawa to Support National Autism Strategy Motion

Fredericton NB area resident Brian Rimipilainen is off to Ottawa to help support the Andy Scott-Peter Stoffer motion calling on the federal government to develop a national autism strategy.

Dad says feds need to step up to help autistic kids

The Daily Gleaner/David Smith photo

Brian Rimpilainen, left, with his eight-year-old autistic son Logan share some play time Saturday at Wilmot Park. Rimpilainen is expected to travel to Ottawa today to observe as Parliament debates an autism bill


OTTAWA –
A Fredericton father plans to listen carefully from a seat in the gallery at the House of Commons today as MPs debate a motion for a national strategy to help autistic children.

Brian Rimpilainen, who has an autistic son, says the federal government should take a leadership role in establishing national standards and funding a national strategy to help families of autistic children. Therapy for some autistic children can cost as much as $70,000 a year.

Rimpilainen, a 36-year-old communications lineman with the Armed Forces, said his trip to Ottawa is a concrete way to show support for Fredericton Liberal Andy Scott’s four-part motion to establish a national strategy for autism spectrum disorder.

Rimpilainen’s eight-year-old son Logan has mild autism that required two years of intensive therapy after he was diagnosed at age three. At $15 an hour and 40 hours a week, the cost can be enormous. But Rimpilainen said it was worth it. Logan is now in Grade 3 and doing well at school.

He also has an assigned teacher’s assistant for his special needs, although the assistant still lacks the specific training for autistic children, Rimpilainen said. “When my child was diagnosed, it was up to us to find services and information. As for funding, there was no funding at the time. My child actually missed out by two years because they had not decided what to do with the funding,” he said.

Currently the federal government is conducting research into autism and providing some tax relief for families of autistic children, but won’t entertain a national strategy because health care is a provincial jurisdiction.

As a result, the quality of services varies across Canada. In New Brunswick, families get help until the child turns six, while in Alberta families are helped until the child turns 18.

Rimpilainen has no time for the jurisdiction argument. “There is a role that the government can play to show leadership. Certain things can be done to improve services across Canada,” he said. “They can provide the leadership to form a strategy with the guidance of the provincial needs.”

As a result, a neurological disorder that affects one in 166 children is subject to a patchwork of programs. “There has not been any real commitment to address the issues of providing services to the children. There has been a little bit of study and information put out, but as to providing therapy to the children and supports to the child and family, not much has been done.

“I would like to see the national strategy come into effect where all provinces would be able to receive some sort of standard toward the delivery and services that are offered across Canada.” The positions the political parties took during the first hour of debate Oct. 27 on Scott’s motion would see it defeated. The Liberals and the New Democrats supported it, while the Bloc Quebecois and the Conservatives opposed it because it intrudes into provincial jurisdiction.


Still, there have been negotiations between the Liberals and the Conservatives to see if it can be amended on the floor during debate so the governing Conservatives can back it. After the second hour of debate in the House of Commons today, there will be a vote on the motion Tuesday, Dec. 5.

November 27, 2006 Posted by | Uncategorized | 1 Comment

Michelle Dawson v Canada Post Corporation – Autism Not an Occupational Safety Hazard

In Michelle Dawson v Canada Post Corporation, Decision No. Decision No.02-023
October 23, 2002 of the Canada Appeals Office on Occupational Health and Safety the appellant Michelle Dawson refused to work and attend a medical appointment required by Canada Post Corporation following an injury on duty absence. Ms. Dawson is autistic and complained that CPC had not given her sufficient prior notice of the medical appointment in writing to prepare for it. A Health and safety officer investigated the refusal to work and decided that a danger did not exist for Ms. Dawson. Ms. Dawson appealed the decision of no danger to an appeals officer pursuant to section 129(7) of the Canada Labour Code, Part II. Under that section an employee can refuse to perform work if it constitutes a danger to that employee.

The investigator had concluded that the direction to attend a medical appointment did not constitute a danger within the meaning of that section of the Canada Labour Code. Michelle Dawson disagreed and appealled providing information regarding her autism disability, the events that led to her refusal to work and the nature of the danger related to her disability. She disagreed with health and safety officer Tran’s conclusion that the requirement to submit to a medical appointment following a leave of absence does not constitute an activity as set out in the Code and so a danger under the Code did not exist.

The appeal board rejected Michelle Dawson’s appeal and concluded that: “Under the Code, Ms. Dawson’s autism and related factors may be considered in respect of a danger connected with the use or operation of a machine or thing, a hazardous condition that exists in a work place or the performance of a work activity. However, where the hazard related to an activity is linked solely to the employee’s own medical condition, as in this case, it is not a danger covered by the Code.”

It is not clear from the decision why Ms. Dawson felt that a direction to attend a medical examination posed a danger to her because of her autism. Had Ms. Dawson’s argument been accepted though it might have been used by federally regulated employers to deny workplace opportunities to employees with autism.

http://66.221.49.64/autismfacts/MichelleDawsonLC.pdf

November 27, 2006 Posted by | Uncategorized | 3 Comments

Thank You Andy Scott and Peter Stoffer

The following are the opening statements by Fredericton MP Andy Scott and Sackville-Eastern Shore MP Peter Stoffer on M-172 the private members’ motion calling for a national autism strategy in Canada. Partisan politics may or may not prevent passage of this historic motion but the autism community in Canada could not have had two more knowledgeable, determined and elequent spokesman to raise autism awareness in the country. Whatever happens I sincerely thank Mr. Scott and Mr. Stoffer for all that they have done. While appellate courts have washed their hands of the autism crisis and politicians generally have tried to turn their backs on vulnerable autistic children Mr. Scott and Mr. Stoffer have been true champions.

Thank you Mr. Scott and Mr. Stoffer.


Autism Spectrum Disorder

Hon. Andy Scott (Fredericton, Lib.)
moved:
[Motion]

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.

He said: Mr. Speaker, first, let me thank the large number of people who have aided in my understanding of this issue. They are parents, community activists and autism support workers. They are Canadians concerned about something that is unfinished business for Canada.

This is a moment when the national government can step up, accept responsibility within the context of its own authorities in this Confederation, and show leadership on this issue. This is a very rich country and, as such, we can no longer afford to look the other way in terms of this rather outrageous limitation of what is available through the public health insurance program in Canada.

I understand there are jurisdictional limitations to which we have to attend, but within that there is an opportunity to show leadership on this file, to work with provinces, to encourage them and incent them to deal with those areas, such as research and evidence-based public policy and standards.

The motion appeals to the government to show that leadership and to Parliament to ask the Government of Canada to do that. The rationale for this is relatively simple and stunningly inconsistent with my view of my country.

The reality is when parents are told their child, at 18 months old, has been diagnosed with autism spectrum disorder, depending upon how profound that condition might be, the effect on the child for the rest of his or her life could be incredibly limiting. Then they are told that there are treatments, therapies and things that can be done, but they are expensive. They may cost them their house. It means that somebody probably has to stay at home, which may cost a parent a job.

This is unacceptable in a country that prides itself on its public health care system. We have to move on this, and the Government of Canada can show leadership on this issue.

I am former assistant deputy minister of intergovernmental affairs with the province of New Brunswick. I understand the jurisdictional issues, but we cannot let those jurisdictional issues get in the way of doing what we know to be the right thing as a national government for Canadian citizens.

I became most aware of this as the member of Parliament for Fredericton. I have a military base at CFB Gagetown. When members of the forces were transferred to New Brunswick, if they happened to have children who were diagnosed with autism, they would call me to say that they needed to get back to Edmonton or some other place in the country. As a parliamentarian, as somebody who feels an obligation to those military personnel who serve our country, I was concerned. However, I was also concerned as a New Brunswicker. What does that say about everybody else who lives in New Brunswick, who would wish to have those services that are better provided in other places in the country?

The other thing that has been revealed to me is all the treatments and therapies available. It is a spectrum disorder so I do not think we can get caught in a narrow debate about this one or that one. The reality is there are things out there at which we need to look. There are things available today that work and they need to be supported by the government so they can be used by parents and families.

I like to see this as a rights issue, something that we do because it is the right thing to do. However, if I cannot convince everybody to do it for that reason, just think about the long term costs of not doing intervention early and now. Think about what that means in terms of the life of that individual and the role the state will have to play. If it is not enough to simply speak to the rightness of this issue, then we should realize that the state will carry a tremendous cost if we do not do the right thing early.

In putting forward a motion to Parliament to appeal to the government, the process I envision would be the national government would recognize that medicare formularies are the jurisdiction of provincial governments. The national government could work with provincial governments, on behalf of Canadian citizens, to advance this issue, with the ultimate objective being that the treatment and care of Canadians with autism would be covered under medicare.

We cannot do that from here and we accept that. However, we can show leadership, offer incentives, do the research and establish surveillance so we can do good evidence-based public policy. Those are all things that are clearly under the purview of the national government. Until we do those things, we really do not have any right to expect the provinces to do the right thing. When we do those things, then we will have a stronger moral position on the other issues.

Again, I want to ensure that it is understood. I know this will be a difficult issue for the government to deal with because of the jurisdictional issue. That is an understood aspect of this debate. I do not think for a second that should allow the national government not to do the things within its purview. It will make it more difficult for the provinces to say no. More optimistically, it think it will encourage the provinces to do the right thing as well.

I would like to thank a number of people. The seconder for this motion, the member for Sackville—Eastern Shore, has long been a champion on this issue. In fact, when my bill was drawn in the process earlier than his, he offered me the opportunity to put this forward so it would be a votable motion, and I appreciate that.

I appreciate the many meetings I have had with representatives of the government. I believe the government genuinely would like to find a way to get this done. For those who watch this place, sometimes not operating at its finest, maybe we can come to a conclusion that would demonstrate just how well this place can work when something calls out to be fixed.

I was asked to read a letter by a constituent in my riding, who is in the armed forces. His name is Brian Rimpilainen. He is from Fredericton. He and his wife Tracy have two kids, a four year old and an eight year old, who has been diagnosed with autism. This was specifically written by him. He stated:

The birth of a child is both joyous and trying at times, but at the age of 3 yrs came the crushing blow of an autism diagnosis for our oldest boy. Overwhelming and frightening was the situation we were thrust into. With reason comes questions— What to do?—What information can we find to educate?—What treatments?— WHAT HELP?

Well, there is ABA (Applied Behavioural Analysis). At our own expense, we sought the guidance of Dr. Paul McDonnell and a therapist. 40 hrs/ week is the recommended therapy which is not always possible for some families. We learned the basics of ABA—we did the best that we could. Later, some assistance came—but too late for our son—he was already entering kindergarten. Tracy was fortunate to have the opportunity to be certified as an ASW (Autism Support Worker) at the University of New Brunswick’s College of Extended Learning.

We know that we were blessed to have been given an autistic child—we celebrate the joys of both our children’s successes and embrace the hardships/headaches of autism. But what now?— What more can be done?—What will happen when Tracy and I are gone? Will my son be taken care of in his adult years?

I see the heartache of parents who relocate to find services for their autistic children. Shall we all move to Alberta where services are enviable? As a member of the Canadian Forces I have contemplated the possibility of a posting. What services will be available? How will the move disturb our children’s balanced life?

I see that there is research and training that could be done. The school-aged autistics need the help of trained Teacher’s Assistants. “Inclusion” is not the answer for all autistics, some require one-on-one instruction, some flourish with the social interaction of peer mentoring. I question why all autistics across Canada can’t get the same level of services within reasonable wait times. Stress and hardship in the autistic family leads to a higher than normal divorce rate: the mother becoming the primary caregiver.

With such a high prevalence rate we must act now. Does it not make sense to invest in trying to facilitate the ability of autistics to achieve their potential as productive citizens? The alternative is an immense cost to society in long-term care. AUTISM does not discriminate, it does not wait, it does not stop at age 6. As a father/ parent, all I can hope is the recognition, dignity, and security for our children as citizens of Canada.

For Brian and Tracy, their story tells the story. I do not know how we can turn our backs on the thousands of Canadians who can tell that story.

As a Parliament, we need to recognize our responsibilities. The Government of Canada needs to show leadership in its dealings with the provinces. It should be respectful. It should not pretend or grandstand. I am not grandstanding. This is something that needs to happen. In this place we have the opportunity to do that. We have the opportunity to show the leadership, to do the research, to make money available, to do the surveillance and to do good evidence-based public policy to ensure that parents know what treatments are working, where they are, who does them and so on. That is critically important.

Also, I thank a Grade 12 political science classroom in Fredericton. Last year the classroom, which graduated in June, took on the project. The class this year has picked it up. The students are writing to members of Parliament. I am sure all members have received letters. These kids have brought in parents and professionals. They had somebody in who drafts legislation for the Province of New Brunswick. They have committed themselves to this. Their teacher is an amazing teacher, by my thinking, and these kids are absolutely committed to this. In fact, I suspect right now there is a full class taking a look at this.

It really speaks to making this place work for Canadians. They are watching. They would like to see this happen. They have put a lot of time in it. They understand the science. They understand the implications for parents and their families.

At the end of the day, I do not think there is anything else to say. In a country with this kind of wealth, and Canada is a wealthy country, and in a country that takes such pride in our public health insurance program, as Canadians, regardless of jurisdiction, we need to step up and say this is wrong and it needs to end. People who need this service have a right to expect their government to pay for it.

Mr. Peter Stoffer (Sackville—Eastern Shore, NDP):

Mr. Speaker, I cannot thank the hon. member for Fredericton enough for his dedication and work for those thousands of families with children who have autism.

Some people would be concerned about the fiscal costs of this initial treatment and everything else. However, research has shown that, in the long run, federal, provincial and territorial governments would save money. Instead of being expenditures, these are investments in our children.

I know every one of us in our ridings have families with children with autism. This is something that transcends all of us across the country. The member knows that in one out of every 166 births in our country a child is diagnosed with some form of autism, and it is increasing. We need to find out what causes autism, what we can do to prevent it from happening, if that is possible. We especially need to provide the care and the treatment they require.

On the fiscal argument, I would like the member to have a couple of more moments to indicate that this is really not an expenditure of dollars. It is an investment in some of the most beautiful children in the world.

Hon. Andy Scott:

Mr. Speaker, I understand that when we ask a question, we are generally supposed to know what the answer is so we are not surprised, but it is not necessarily the case that when we ask the question, we have to give the answer as well. However, I take the member’s point.

I frankly prefer to feel that as a nation we would do the right thing because it is the right thing to do, but if that is not enough, the reality is that this will save the provinces that are engaged in it and the nation enormous amounts of money. The upfront costs associated with intervention are so much less than the lifetime costs of not intervening. It is not really even arguable. To answer the question specifically, that would be the answer.

One of the things we really do have to recognize is that the federal government must be compelled to show leadership on this to pull all the provinces together. In the Maritimes, if New Brunswick stepped up and really did this better than everybody by a long shot, which it should and I wish it would, but if it did, there would be people who would relocate to my province specifically to have access to this service.

That is one of the reasons I am fearful that provinces would be a little reluctant to step up and do the right thing. That is why it is important for the national government to bring all the provinces together, so that all of the provinces can work together and move together to remedy this outstanding grievance.
[Translation]

Mrs. Claude DeBellefeuille (Beauharnois—Salaberry, BQ):

Mr. Speaker, I very much appreciated my hon. colleague’s speech. I know children who have autism and I know how hard it can be for their parents.
My question for the member is this: does he have any support for his motion? Can he tell us if the Autism Society Canada, for instance, has written to him to indicate its support for the motion?
[English]

Hon. Andy Scott:

Mr. Speaker, as a matter of fact, I have had these discussions with people from a variety of organizations and have a great deal of support. It is not unanimous and it is important that we recognize that because I do not think we can allow ourselves to fall into the trap, to wait for everybody to agree on everything before we do anything. We cannot. There are too many people.

It has to happen right now and we will deal with those issues that are out there, and there are because I am getting calls from people who are questioning elements of this as well, and that happens. However, the feedback is overwhelming, particularly from parents, people who are affected and who know that time is running out soon.

We are talking about somebody who had a child nine months ago. We cannot imagine the feeling if we knew that there was something available, we knew it would give our child a better life, and we could not afford it. It just does not seem Canadian to me.

Mr. Paul Dewar (Ottawa Centre, NDP):

Mr. Speaker, I want to applaud the member for bringing this forward. My wife is a teacher. She actually teaches junior kindergarten. She has seen the explosion of autism in the school at which she teaches. Identifying children early seems to be cutting edge, but we need more support. Will the hon. member comment on that, the funding for it and where it would come from?

Hon. Andy Scott:

Mr. Speaker, obviously, the earlier this intervention can take place, the better the outcomes and the better the likelihood of those outcomes. In some provinces, there is funding for that. It is a mishmash across the country. Credit goes to those who do it. I think we need to do more in many jurisdictions.

That is why it is appropriate for the national government to be engaged in this. It can help. I do not mean help in a negative sort of way, but just in a leadership way to help bring all the provinces together, to ensure that next time the ministers of health in Canada meet together, that this is on the agenda.

November 26, 2006 Posted by | Uncategorized | Leave a comment

Harper Conservatives’ National Health Care Double Standards

The Harper Conservatives have announced a National Cancer Strategy which would see the development of a national health care strategy for cancer. The plan would have three aims “ preventing cancer, finding new treatments and improving care for patients regardless of where they live in Canada.” The Harper Conservatives deserve a healthy round of applause for its commitment to a national strategy to fight cancer. They also deserve a hearty round of criticism for their double standard in denying the autism community a long sought national autism strategy.


With the Andy Scott-Peter Stoffer motion for a national autism strategy still making its way through the House of Commons the Conservative Health Minister Tony Clement called for a research center and a … national web site (big deal). In indicating his government’s opposition to a national autism strategy the Health Minister indicated that his government would not intrude on provincial jurisdiction over health care yet endorses a similar national health strategy for fighting cancer.


This is clearly a double standard. The same arguments over constitutional jurisdiction over health care apply to cancer as apply to autism. Yet the Harper crowd uses those arguments in one case (autism) and not in another (cancer).


Thank you to the Conservatives for the national cancer strategy. Boo and hiss to them for rejecting a national autism strategy.

November 25, 2006 Posted by | Uncategorized | Leave a comment

Harper Conservatives Reject National Autism Strategy

The Harper government has indicated that it will fund a research chair in autism which, in itself, is a good thing. Unfortunately it is being done to placate the autism community and maintain its public relations image as it rejects a Private Members motion by Liberal Andy Scott and NDP Peter Stoffer which calls for a more comprehensive and serious national autism strategy. If the Harper conservatives reject this motion families and friends of autistic children and adults should prepare to organize and vote against Harper Conservatives in the next federal election. Approximately 1 in 166 Canadians have an autism spectrum disorder. If we organize effectively we should be able to have some impact; especially if the vote is close in specific ridings.

November 22, 2006 Posted by | Uncategorized | Leave a comment

School District’s Duty to Consult – Hewko v BC

In a decision with implications for schools in New Brunswick and other provinces a British Columbia court has ruled that a school district failed to discharge it’s statutory duty to consult parents of an autistic student by failing to meaningfully consult with the child’s parents. The court found that the statutory duty to consult with the parents required that consultation be meaningful and that, on the facts before the court, reasonable accommodations for the autistic child’s ABA based learning method were required.

The child had been receiving ABA therapy at home prior to entering the school system and had thereby learned a variety of practical and academic skills and had acquired a means of communicating. The court rejected arguments from the school board and province that the parents demands for continued ABA instruction in the school by properly trained ABA workers were unreasonable and unrealistic and that the parents were attempting to impose their personal choices on the school.

The well documented record of ABA in educating autistic children was noted. The Court found that: “… the school board failed to discharge its consultation obligation by failing “…to ensure that [the plaintiffs’] representations were seriously considered and, wherever reasonably possible, demonstrably integrated into the proposed plan of action…”. Most importantly, the District through its proposals and by failing to seriously accommodate the Hewkos home-based program, failed to demonstrate it could produce instructional control of Darren.” The Court’s decision in Hewko v B.C. 2006 BCSC 1638 (CanLII) can be found on line at:

http://www.canlii.org/bc/cas/bcsc/2006/2006bcsc1638.html

The school board’s duty to consult in Hewko was found in sections of the British Columbia School Act. A statutory duty to consult is also found in sections 12 and 13 of the New Brunswick Education Act:

12(1) Where the superintendent concerned, after consulting with qualified persons, determines that the behavioural, communicational, intellectual, physical, perceptual or multiple exceptionalities of a person are contributing to delayed educational development such that a special education program is considered by the superintendent to be necessary for the person, that person shall be an exceptional pupil for the purposes of this Act.

12(2) The superintendent concerned shall ensure that the parent of a pupil is consulted during the process of the determination referred to in subsection (1), and in the process of developing special education programs and services for the pupil.

13(2) The parent of a pupil has a right to reasonable consultation with the pupil’s teacher or the principal of the school the pupil attends with respect to the education of the pupil.

The Hewko decision has clear implications for the education of autistic children in the New Brunswick school system. In some schools and districts parents are essentially presented, without their involvement, with a fully developed SEP (Special Education Plan) for the education of their autistic child. SEP’s developed without meaningful consultation with the parents may not stand up on appeal under the Education Act, on application to the Ombudsman, or on judicial review to a court. Similarly, depending on the facts of a given case, a failure to provide autism trained Teacher Assistant to implement an autistic student’s ABA based learning plan may be found to constitute a failure of the district’s duty to accommodate that child’s disability.

November 18, 2006 Posted by | Uncategorized | 1 Comment

Mother of autistic child reacts to news of expelled, handcuffed student with Aspergers.

Mother of autistic child reacts to news of expelled, handcuffed student with Aspergers. From the Daily Gleaner, Fredericton New Brunswick, November 16, 2006.

Letters | Reader objects to actions taken by high school


On Oct. 27, 2006, I sat nervously watching Andy Scott speak on behalf of the thousands of autistic children across Canada fighting for their rights as Canadian citizens.

As a mother of a young autistic child, it brought tears to my eyes, and filled me with hope, and joy, that maybe, someday every province will help autistic children to the fullest of their ability.

I was so very amazed at the fact that a Grade 12 class from Leo Hayes High school, taught by a Mr. Greg Peters, took on this project, and fought so hard for this issue to be brought to the House’s attention (kudos to you!).

However, the same school that prides itself in this accomplishment had a young boy handcuffed, and kicked out, a student who suffers from Asperger’s Syndrome (which is a type of Autism).

Whether or not this young boy can become aggressive is not the issue. The issue at hand is that this boy is not getting the necessary help and support that he needs to live a productive life.

The principal of Leo Hayes High School should be ashamed as this is unfair and improper treatment. You can easily discourage a child with Autism, and I am sure that this young boy has not had an easy life, yet you kick him out of school? Handcuff him?

The school that has students who are trying to help these children? What type of an example are you setting for this Grade 12 class that worked so hard on their project, fought so hard to have everyone’s voices heard?

Treatment like this is why it scares my husband and me every day to let our son enter the school system. We fear that ignorance like this will challenge his life even more.

Lisa Marie Hay

Nashwaak Village, N.B.

November 16, 2006 Posted by | Uncategorized | 1 Comment