World Autism Awareness Day Act

An Act respecting World Autism Awareness Day

This bill was last introduced in the 41st Parliament, 1st Session, which ended in September 2013.

Status

This bill has received Royal Assent and is now law.

Elsewhere

All sorts of information on this bill is available at LEGISinfo, provided by the Library of Parliament. You can also read the full text of the bill.

Votes

  • June 20, 2012 Passed That the Bill be now read a second time and referred to the Standing Committee on Health.

World Autism Awareness Day Act
Private Members' Business

October 23rd, 2012 / 6:30 p.m.
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Conservative

Harold Albrecht Kitchener—Conestoga, ON

moved that the bill be read the third time and passed.

Mr. Speaker, I have been blessed with many joys in the House. Seeing hon. members unanimously pass my motion targeting Internet predators, Motion No. 388, was an occasion where we rose above partisanship.

When an overwhelming majority of hon. members united to deliver a message of hope to vulnerable Canadians everywhere by voting to pass Bill C-300, my legislation on suicide prevention, I felt humbled to once again be part of an occasion where our normal partisan rancour was put aside.

Today, I stand as sponsor in the House of Bill S-206, a bill from the other place, calling for recognition of World Autism Awareness Day. Once again, I feel blessed because I sense unity on this issue.

Through the study at committee and through the debate at second reading, not a negative word was spoken about this effort. Instead, we have used our time to educate each other on the very real need to promote autism awareness and to share some very personal stories about how autism has touched our lives.

I mentioned the experience of my friend and colleague, the member for Edmonton—Mill Woods—Beaumont. I thank him for his very personal sharing of his life with parliamentarians. The way the member and his family care for Jaden and bring him to the House to allow us to interact with Jaden has been one of the joys that I have personally experienced as a member of Parliament, and I think all of my colleagues would agree.

Also the member for Portneuf—Jacques-Cartier shared some experiences from her own family. Some hon. members want more to be done, but no one has disputed that every effort to promote autism awareness is a worthwhile effort.

During study of the bill at the Standing Committee on Health, the hon. member for Saint-Léonard—Saint-Michel asked Mr. Richard Burelle, the executive director of the Autism Society of Canada, if the passage of Bill S-206 would be helpful. Mr. Burelle's reply was:

Keeping autism in the forefront is always a good thing. As Senator Munson said, the fact that we're piggybacking on World Autism Awareness Day is great. Any kinds of forward steps we can take in order to keep autism in the forefront, to create that awareness, are steps in the right direction.

There is no controversy here. There is no federalist-sovereigntist division, no left-right divide. In truth, I do not believe there is any reason to continue debating the bill. Rather than spending our time agreeing with each other, I would ask hon. members to allow debate to collapse and to allow Bill S-206 to pass on a voice vote today.

This effort did not begin with this Parliament. Previous efforts enjoyed similar support, but never became law, due to election calls.

Families coping with autism spectrum disorders have waited long enough, since 2006, in fact, for the House to simply acknowledge an awareness day.

Given the broad level of support the bill enjoys from all quarters, I ask that we stop talking about recognizing World Autism Awareness Day and just get this done.

World Autism Awareness Day Act
Private Members' Business

October 23rd, 2012 / 6:30 p.m.
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Conservative

Harold Albrecht Kitchener—Conestoga, ON

Mr. Speaker, I appreciate the sentiments of my colleague. I would certainly favour moving right ahead, but I know there are a number of members in the House who have personal stories they might like to share, which would add a little to the conversation. I am open to having a few more short conversations, but I agree that it is important for us to get this finished today and move it on so it can actually receive royal assent.

World Autism Awareness Day Act
Private Members' Business

October 23rd, 2012 / 6:30 p.m.
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Liberal

Kevin Lamoureux Winnipeg North, MB

Mr. Speaker, to express our appreciation in recognition of what the member has attempted to accomplish here, autism is a very important issue for many Canadians who are affected directly and even those who are affected indirectly by this disorder. Many individuals who are affected with autism are absolutely outstanding citizens and contribute in every aspect of our society.

I applaud the member for bringing forward the bill. We in the Liberal Party support the bill and look forward to its passage.

World Autism Awareness Day Act
Private Members' Business

October 23rd, 2012 / 6:30 p.m.
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Conservative

Harold Albrecht Kitchener—Conestoga, ON

Mr. Speaker, I am sure everyone in the House knows someone who has been affected by autism. For me, it is a matter of the joy that these folks bring to our lives. If we are more knowledgeable about this issue, it will certainly help us in our interaction at home, in the House and wherever we are in Canada. There are so many people who will benefit from autism awareness day, which will simply raise the awareness that these people can contribute so much, and have contributed so much, to our society.

World Autism Awareness Day Act
Private Members' Business

October 23rd, 2012 / 6:35 p.m.
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Conservative

Royal Galipeau Ottawa—Orléans, ON

Mr. Speaker, I am most impressed with the work that has been done in the House by the hon. member for Kitchener—Conestoga and by other members from all corners of the House.

Autism is a cause that I have personally embraced. I have raised money to support it ever since I was elected 2,463 days ago. I am very humbled to give it royal assent immediately.

World Autism Awareness Day Act
Private Members' Business

October 23rd, 2012 / 6:35 p.m.
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Conservative

Harold Albrecht Kitchener—Conestoga, ON

Mr. Speaker, it is great to have this kind of support for the bill. I agree that the sooner it gets royal assent the better. However, we should allow a few other members to have a few comments to add their support to this initiative that has come from the other place.

I want to acknowledge Senator Munson and his efforts in getting this done. I had the honour of supporting it in the House, but Senator Munson actually did the work to get this to where it is now. It is important that we move on it as quickly as possible.

World Autism Awareness Day Act
Private Members' Business

October 23rd, 2012 / 6:35 p.m.
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NDP

Libby Davies Vancouver East, BC

Mr. Speaker, I would like to say at the outset, on behalf of the NDP, that we have agreed that the debate tonight will hopefully be cut short, that this will be approved on a voice vote. Therefore, there is no controversy, in case people start spinning this up. There were discussions held on this, and we certainly agreed with that.

We would welcome the opportunity to make a few remarks about the bill. First, I would like to thank the member for Kitchener—Conestoga, as well as the senator who came before the health committee and spoke about the bill. We had a good discussion. We were very clear at the health committee, when we dealt with it a week ago, that we in the NDP very much support a day in recognition of autism and the impact it has on Canadian families.

As the member alluded to, if there is any slight criticism it is that this really is a bill about an awareness day. We would hope to see much more meaningful action take place, as many members in the community have called for, families who are living with autism. There are some very severe needs that need to be addressed. For us, this is an issue about certainly giving recognition but needing to do more than that. That is our point.

I would point out that a number of our members have also had bills on autism. The member for Vancouver Kingsway, put forward Bill C-351. That has been a very important bill that he put forward. There is also the member for Sudbury, who has had two bills calling for action to better support those living with autism. That is the kind of meaningful action we need to see.

We in the NDP are somewhat concerned that for a number of years the government has not taken the kind of leadership that is required on this issue. We do see many organizations calling for a national strategy. In fact, there were promises made to have a national strategy on autism. That is something that is very important to do. I know the member for Kitchener—Conestoga probably supports that. I hope he will encourage his government to now go further and build on the day of awareness we have.

The only other point I would like to make is that much has been said overall in this debate, in the first hours of debate, but there is new information that is coming out. One of the issues is an issue of gender, which on the surface appears to be an issue about age. This has to do with where early intervention is provided.

The fact is that there are some estimates that the average age of diagnosis for a girl on the autism spectrum is 12, whereas for boys it is between the ages of 5 and 7. What happens is that, because early intervention often takes place around the age of 5 or 6, many girls are actually being cut out of that early intervention.

This was something that was brought to my attention by a family in Nova Scotia who actually have three daughters who are on the autism spectrum. It is something to factor in about what needs to be done, to understand the kinds of supports families need to have and to understand, when we say early intervention, that it actually has to be appropriate to the ages of children when they are diagnosed. Certainly intervention is important, but it has to be appropriate and it has to meet the needs of the children at the ages they are being diagnosed.

I did want to make that point today, because I do think it is something that helps build the debate on this issue. In conclusion, I would again say that, in the NDP, we have supported this bill. We supported it at committee. We are happy to let it go on a voice vote today, which means it will be approved.

However, we would use this opportunity to say to the government members who have been supporting this bill, and indeed to all members, let us see this as a first step, let us build on this issue, let us hold the government to its commitments for a national strategy, and let us support the families in their needs, as well as people who are living with autism, because there is much more that needs to be done.

World Autism Awareness Day Act
Private Members' Business

October 23rd, 2012 / 6:40 p.m.
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Liberal

Hedy Fry Vancouver Centre, BC

Mr. Speaker, like my colleagues in the House, I want to support the member for Kitchener—Conestoga, who suggested that we make some quick comments and then take it to a voice vote.

The Liberal Party supports this very much and we are very grateful to Liberal Senator Jim Munson, who brought the bill forward. However, I do want to add some comments.

My hon. colleague for Vancouver East discussed the fact that gender is a huge issue in terms of early diagnosis. We know that early diagnosis is very important to get the kind of early interventions one needs. However, there are some other things I want to highlight.

I was quite impressed and moved at a conference I was at this weekend in British Columbia. It was an international conference with people from eight countries, all of whom themselves were autistic or on the spectrum disorder at some level. I heard some things from them that, even as a physician, I was not aware of and that moved me greatly.

We talk about this as a spectrum disorder, which becomes an illness, a diagnosis, et cetera. However, I was very much moved by the people in that room, from eight countries, in that that they did not want people to see them as a disorder. They wanted people to understand that many of them are functioning well and have great ability. They need people to understand the nature of autism in its full spectrum.

It was interesting when the member for Vancouver East talked about diagnosing girls at about 12. I met women with Aspergers who belong to the Asperger Women Association, who were diagnosed at 50, 42 and 35.

We see that we do not understand, in fact, that many people with autism function in our society. However, the people at the conference commented that they are discriminated against in society. Sometimes at home and school there is a certain protection for them, but when they go out into the real world they are discriminated against. They cannot get jobs. They find that people look at them as if they have a mental disability, when many of them have extraordinarily high IQs. Many are extremely talented artists. Some are very verbal and very good at all kinds of communications, not necessarily verbal ones.

I heard that they wanted the schools to understand them and not discriminate against them. They are subject to bullying a great deal and they wanted to deal with that issue.

As we talk about awareness, they very much want people to understand the fact that they are very able. Many of them are highly functioning. I met people there that day who had extraordinary IQs that were much higher than mine. They would be at genius levels. I also heard that they are concerned about their human rights.

I heard some moving things. For instance, they do not want people to fix them or cure them, but they do need support, understanding and opportunity to participate fully in jobs and the economic, cultural and social sectors. This is where I want to put a plea on the table. I was extremely moved by that.

As a physician, I had understood the spectrum disorder very differently. However, I do not even want to talk about it as a spectrum disorder anymore. As a physician, I saw it as a problem for a long time and not necessarily as something where a person would say they were born autistic, that is who they are and they are happy with the gifts they have. They just want opportunity, understanding and the ability not to have people say they want to fix them.

In fact, some said that family doctors, psychologists and psychiatrists have told them that if they are functioning well they should not tell anyone they are autistic. If they did not tell anyone, they would not be discriminated against. It was kind of like telling the LGBT community, as in the old days, to stay in the closet and not to come out.

I want to put that to members here so that we can understand people with autism spectrum disorder very differently from how we have tended to understand them.

World Autism Awareness Day Act
Private Members' Business

October 23rd, 2012 / 6:45 p.m.
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Edmonton—Mill Woods—Beaumont
Alberta

Conservative

Mike Lake Parliamentary Secretary to the Minister of Industry

Mr. Speaker, I am not going to engage in debate today either. I am very heartened by the members of all parties saying they want to bring this to a vote tonight. I am also heartened, listening to two members of the opposition who have been around here for a long time, who have both said they have learned something new about autism in the last little while. I am excited about that. I look forward to having further conversations with them. If there is any way I can help them increase their understanding any more, or put them in touch with others who may also be able to express similar types of challenges, certainly I would be glad to do that.

I want to recognize a few people today, if I could. I want to thank Senator Munson for moving this bill in the first place. I really appreciate that. I appreciated having the opportunity to work with him on this issue over time. I want to thank some government ministers: the Minister of Health, the Minister of Human Resources, the Minister of National Revenue and staff who we worked with to try to move some of the issues.

The opposition members talked about some of the challenges. We have had the opportunity to bring forward some of those challenges to these various ministries and their staff, and stakeholders have been received very well as we have tried to move some of these issues forward. I want to thank those ministers.

I want to thank the member for Kitchener—Conestoga for picking up the bill in the House and for his very enthusiastic support of it, as with everything he does. The vigour and the positive attitude with which he supported this have been really encouraging.

I am doing a lot of thanking today, but I have spoken a lot about the issue. I want to thank my own staff, who I do not thank enough, for their work on this issue. They have embraced the issue as their very own. They have embraced Jaden as though he is their family member. It is a lot of work on top of the regular life of an MP. The work they do to raise awareness of this issue on top of their regular workloads is astounding, and I really want to thank them for that.

Jaden and I had the opportunity to go to New York a couple of weeks back. We went there for a UN event. The World Autism Awareness Day actually arose out of an initiative by the UN and Bob and Suzanne Wright, who founded Autism Speaks. It arose out of conversations they had. They have continued their work to raise awareness on this important issue.

We were there for a couple of days, and while we were there we had a chance to speak to the spouses of world leaders. There were 15 or 16 spouses. We actually spoke with the Prime Minister of Bangladesh and the President of Panama at the same time. We were very enthused and excited. We had the chance, as we were speaking to them, to play a bit of football in front of them. I had to explain that North American football is a bit different from the football most of them are used to. We do that to settle Jaden down, because he sometimes gets very excited and intense when we are doing some of these things. Playing football kind of calms him down, so we had the chance to show them how that works for him.

While we were in New York, I was constantly working, so Jaden was grabbing my shoulder and hanging off my shoulder, staring at my BlackBerry the whole time because he had to be on top of what the schedule was, but he was more excited than I have ever seen him in two days. We really had a fun time.

We went to Times Square on Friday night and, in terms of autism awareness, one of the things we have to be aware of as parents is that when we are in situations like that, Jaden is very excited, hanging off my shoulder, but if he gets two feet away from me in a crowded atmosphere like that, I might never find him again. We had the opportunity to experience Times Square together with all the excitement of the bright lights and everything else. It was a spectacular time.

We had the chance to do about five media interviews while we were there. I do want to recognize the folks in the media who have really worked to raise awareness of this issue. David Ariosto from CNN did an interview with us, and so did David Common from CBC. They both got it immediately. They both understood Jaden immediately. They made that connection with Jaden, and their stories reflect that. That was similar to the things that Tom Clark and Steve Paikin and Evan Solomon have done here when they have had the opportunity to raise awareness. We talked to Marci Ien at Canada AM and a lady named Susan James at ABC News. All of them really took an interest in this issue. It was not just another day in their lives of work, but they actually took an interest in really raising awareness of this issue.

They had a chance to get to know and connect with Jaden and move that issue forward. I want to thank them for doing that and for taking the time to go above and beyond in their approach to this.

I do not want to take much more time. I know that we want to pass this bill. No one wants that more than I do. However, I would be remiss if I did not thank the families of people with autism. When it comes to autism awareness, we can do a lot in the House, but it is the families that model the grace, perseverance and love for their family members, the sons, daughters, siblings, and in some cases, parents, who may not have been diagnosed until later in life as being on the spectrum. No one who advocates is more aware of the challenges than they are. They live every day with this. We discuss it once in a while in the House, but every single day those families live with this.

We heard the hon. member down the way refer to individuals with autism and their own unique perspectives. There is certainly a whole variety of unique perspectives. When we focus on the challenges, we also have to focus on the amazing, unique skills and talents these people have. As a society, we need to try to find ways to include them, take advantage of their incredible strengths, and learn from them. They make our lives better. My life is infinitely better because my son Jaden is involved in it. I would say that everyone in the House who has had the opportunity to meet Jaden, without exception, would say that their lives are better for having had the opportunity to give him a high five, a hug or a kiss.

With that, I will close. I thank all members from all parties for the way they have embraced Jaden during the time I have been a member of Parliament. God bless them all.

World Autism Awareness Day Act
Private Members' Business

October 23rd, 2012 / 6:50 p.m.
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NDP

Isabelle Morin Notre-Dame-de-Grâce—Lachine, QC

Mr. Speaker, I am very proud and pleased to rise in the House today to support Bill S-206, An Act respecting World Autism Awareness Day.

I will first read some interesting figures. We are all somewhat familiar with autism, but I would like to provide some information about autism in Canada.

In Canada, although there is a lack of detailed epidemiological data, there are currently around 48,000 children and 144,000 adults with some form of autism. It is estimated that one in 150 children in Canada is autistic. We know that the rate of autism is increasing every year without a discernible cause. Boys are much more susceptible than girls to be affected by autism. It is estimated that autism is four times more common in men than in women. Autism is more prevalent than childhood cancer, AIDS, and diabetes combined. It is estimated that treating an autistic person in Canada can cost between $80,000 and $100,000 a year.

These figures reflect the scope of the situation. That is why we will definitely support this bill. In fact, we would like to do so as quickly as possible.

This awareness day will help organizations specializing in childhood illnesses, such as the Autism Society of Canada, promote public awareness of this illness and perhaps go further and make parliamentarians aware of the importance of developing a broader strategy. I see this bill as a first step.

Last year, I talked about another bill dealing with the establishment of an illness awareness day. At the United Nations, only three days are dedicated to illnesses. This shows the importance of this day. If the United Nations has decided to recognize only three illnesses and if autism is one of them, it means we should really talk about it.

This will not only give these organizations a day for meeting with parliamentarians and senators. It will also give them enough visibility so that people better understand the illness and learn how to help those who suffer from it better integrate into society.

This illness costs parents from $80,000 to $100,000 annually. That is a tremendous cost. If we have a better understanding of this illness, perhaps more people will have better jobs. I am thinking of mothers who must look after their child and who may want to work part-time. It can also provide tools to employers to help families who have a member suffering from autism better integrate into society.

I would like to explain what the NDP really wants. Establishing an autism awareness day is a good thing. However, people in different parts of Canada do not all have access to the same care. Since health is a provincial jurisdiction, people do not have access to the same care in every province, and health insurance plans do not pay the same amount. This is an issue that should be discussed.

There is also the case of young aboriginal children who suffer from autism. Currently, there is nothing in Canada to tell us what we should do for these young children. Yet that is clearly a federal responsibility, because everything related to aboriginal affairs comes under that jurisdiction.

We hope that this bill is just a first step and that we can create this day, but we also hope to go further.

I would therefore first like to thank the senator who sent this bill here and the Conservative member who sponsored it; however, I would also like to make them aware of the fact that we should take this a little bit further. When this type of bill is introduced, it is important to determine whether it will improve the overall situation of people with autism.

We must make them aware of the fact that this bill is a first step for young aboriginals. However, we would like it to go further.

World Autism Awareness Day Act
Private Members' Business

June 19th, 2012 / 5:30 p.m.
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NDP

Élaine Michaud Portneuf—Jacques-Cartier, QC

Madam Speaker, it is a great privilege to rise today in the House to speak to Bill S-206, An Act respecting World Autism Awareness Day.

This cause is particularly close to my heart and I know this debate directly relates to thousands of Canadian families.

Bill S-206 calls on the government to designate April 2 as World Autism Awareness Day across Canada.

On December 18, 2007, the United Nations General Assembly declared that April 2 of every year would be dedicated to efforts to increase our understanding of autism spectrum disorders. Autism Society Canada and other civil society groups already recognize this important day. It is time for the federal government to do the same.

Autism is the most common childhood disease and is four times more common in boys than girls. It is estimated that more than one in every 110 children is born with some form of autism and that there are currently nearly 35 million autistic people around the globe. In Canada alone, there are approximately 200,000 autistic people, including 48,000 children.

Over the past 20 years, there has been a drastic increase in the number of diagnoses of autism disorders, without any clear explanation for this increase.

Despite the ever-growing number of diagnoses, autism is a disability that remains unfamiliar to a large number of Canadians. The many forms of autism are part of a group of conditions referred to as autism spectrum disorders.

Each case of autism is unique. The intensity of symptoms is different for every autistic person, and the symptoms may also vary over time.

Generally speaking, autism disorders are characterized by deficiencies in verbal and nonverbal communication, and there may be learning disabilities. Without early intervention, nearly 40% of autistic individuals will never learn to speak.

Autism disorders are also characterized by problems with social interaction, and by repetitive and stereotypical behaviours.

It is not yet known what causes autism spectrum disorders, nor how they can be treated. However, it is known that early diagnosis and specialized intervention can greatly improve the quality of life and the social abilities of an autistic individual and his or her family.

The passage of Bill S-206 will help shed light on autism and the other pervasive developmental disorders, and this is a step in the right direction.

However, we must go far beyond merely raising awareness among Canadians. The government must take action.

At the present time, Canadian families who are affected by autism spectrum disorders have difficulty obtaining the help they need and they may not have equal access to health care services and social services, depending on the area of the country in which they live.

This situation is unacceptable. As parliamentarians, we have the duty and the power to provide assistance to these families who really need it.

I am very familiar with the day-to-day situation facing families affected by autism spectrum disorders. My 23-year-old brother, Philippe, was diagnosed with a pervasive development disorder not otherwise specified, a PDD-NOS, when he was 17 years old.

Philippe is a cheerful and generous person, who likes to help others and for whom family is very important. However, things were not always easy for him at school and he always had difficulty with social integration.

For many years, my parents did everything they could to help him, without knowing the cause of his problems. There were very few services available to help them in the schools and they had to do almost everything on their own.

They consulted a large number of specialists, without ever really getting a proper answer. There were countless visits to doctors, pediatricians, neurologists, psychologists, speech therapists and occupational therapists over the years, but the questions remained. Of course, most of these tests were not covered by private medical insurance or by Quebec's Régie de l'assurance maladie. My parents had to cover all the costs themselves. It took 12 years to get a formal diagnosis for my brother.

Thanks to a psychologist who knew about pervasive developmental disorders and who had just been hired at Philippe’s secondary school, Philippe was finally diagnosed. It was sheer chance.

After the diagnosis, my brother was able to enrol in a specialized class with more personalized support, but the program was available in only one of the town's four secondary schools. As a result, he had to change schools and build a new social network, which is quite difficult for people living with pervasive development disorder.

My parents have looked for programs targeting people living with autism spectrum disorders, but these programs are virtually non-existent.

My brother was lucky enough to have access to socialization courses offered at a hospital in the region, as well as to regular follow-ups with a psychiatrist, but nothing more. The only program in the region catering to teenagers was full. He was never able to enrol.

As far as job placement is concerned, there are absolutely no programs to help people living with autism spectrum disorders.

Since my brother does not have an intellectual disability, most of the programs were not available to him. He had to apply for social assistance in order to get access to a program that enabled him to do an internship in the workplace. Without his perseverance and that of my parents, Philippe would not have had this opportunity to develop, to validate himself and to acquire new skills.

It is high time that Canada had a national strategy on autism spectrum disorders, and took practical steps to help people with autism and their families.

Currently, it is the provincial governments, health promotion organizations and families that provide the necessary care to people with autism.

However, the federal government also has a responsibility to people with autism and their families. This government must provide sufficient resources to the provinces and territories so that they can provide treatment and services to people with autism spectrum disorders, including specialized education and professional training.

It does not make sense that in our society, people who are able to hold jobs and fit in must rely on provincial social assistance to be able to access job opportunities. I think that is counter-productive. The provinces are not investing resources in the right places. Families need direct access to these resources. There are job opportunities and integration opportunities for people with autism spectrum disorders. We must offer those to them.

We must also ensure that testing and treatments are covered by public health insurance plans. This is not the case right now. The various specialists required to diagnose pervasive developmental disorders are not included in the list of specialists paid by the current plan. Parents must sometimes pay vast amounts of money to get answers to their questions and come up with a plan to help their children.

As I mentioned earlier, in the case of my brother it took 12 years to get a diagnosis—12 years of tests, appointments and uncertainty. That is a heavy investment and a great deal of anxiety for the families and the people with autism spectrum disorder, who understand that some things about themselves do not work the same as they do in other people. They are looking for answers and may not have access to them, perhaps because of the cost or where they live.

We therefore have a responsibility as parliamentarians to consider this issue and offer families opportunities that are not currently available to them.

Programs must be put in place to allow people with autism to develop their skills and reach their full potential. With attention and programs and assistance adapted to their needs, people with autism are able to accomplish many things and can develop social networks that they might not be able to access without additional help that cannot always be provided by charitable organizations in the community. These resources are not always available. I know that these resources are lacking in the Outaouais region and other areas of Canada. Families are speaking out about this need. We must quickly address this need and find solutions.

There is still much work to be done in order to help Canadian families affected by autism spectrum disorders. I hope that the government will finally hear the pleas of families such as mine, who are desperately waiting for their government to take concrete action.

Canadians sent us here and they have confidence in us. In each of our ridings, there are families that face these situations every day, and they deserve our support and our help. We are in a position to do that.

The world autism awareness day bill is a step in the right direction. I am very proud to support the bill, as are my colleagues and several other members who have indicated that they will also support it.

However, much remains to be done. We cannot stop there. Autism spectrum disorders affect the lives of thousands of Canadian families. It is our responsibility to help them now.

Today, I spoke about my own family. But others are in the same situation and have the same problems as me, my family and my parents, and they expect us to act quickly on their behalf. Today, I hope that this will be just the first in a series of steps that will finally meet their expectations.

World Autism Awareness Day Act
Private Members' Business

June 19th, 2012 / 5:40 p.m.
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Liberal

Francis Scarpaleggia Lac-Saint-Louis, QC

Mr. Speaker, first I would like to salute Shawn Murphy, the former member of Parliament for Charlottetown who retired just before the last election. I should add that the current representative for that riding is an excellent member who has obviously taken much inspiration from Mr. Murphy in terms of the sincerity of his efforts and the intensity of his work ethic.

Shawn Murphy tabled bills and motions several times in this House calling on the federal government to create a national autism strategy. The bill we are debating today, courtesy of Senator Munson, is calling on the government to officially enact in Canada April 2 as world autism awareness day. It is but one item in a suite of federal actions needed to address the growing and still poorly understood autism spectrum disorder, which affects a growing number of children and their families every year in this country.

In turn, we can only have a concerted national action on autism if first we create a critical level of awareness among the general Canadian population. This awareness will lead to overwhelming public consensus on the need for such action, followed logically by political pressure at the grassroots that, at the end of the day, should produce concrete government measures on autism.

To many of us, autism appears to have come out of nowhere. Personally, I do not recall talk of autism when I was growing up. I do not know if this is because autism had not been properly diagnosed or whether it is because new factors are at work that have increased the incidence of autism.

As we know, approximately 1 in 110 Canadian children are diagnosed with autism. The number of new cases is increasing by 10% to 17% per year. Another fact of which I was not aware is that boys are four times as susceptible as girls to be diagnosed with autism. Just this past Sunday, I spent the afternoon with a friend whose son is autistic. Today I meet numerous parents and families who are nurturing an autistic child with extraordinary love, dedication, intelligence, creativity and patience. What all these parents have in common is a fierce and indefatigable determination to create a powerful community of interest around those directly or indirectly affected by autism and to push for a proper public policy response to autism at the local, provincial and national levels. I will take this opportunity to salute these parents.

One of the reasons I have chosen to speak today in the debate on the bill is that the region I represent on the island of Montreal, what is commonly referred to as the West Island, is home to a higher percentage of people with intellectual disabilities and autism than any other region in Quebec. If this is so, it is testimony to the extraordinary civic-mindedness and volunteer spirit of my community, I can proudly say. This spirit has been the historic hallmark of the West Island and lives on today, perhaps on an even wider scale as primary and secondary schools, for example, make community service part of their curriculum.

One of the most eloquent examples of how citizens of the West Island coalesce to meet social and health needs is through the West Island Association for the Intellectually Handicapped, which operates under the vision and energetic leadership of Natalie Chapman. WIAIH, which in 2008 celebrated its 50th anniversary as a community organization, provides support to people with intellectual disabilities or autism. Its mission is to maintain and develop innovative services and to sensitize the community to available services and the need for greater government support for people impacted by intellectual disabilities and autism.

If the West Island of Montreal includes such a large number of families with children with intellectual disabilities or autism, it is because of the scope and quality of WIAIH services. In other words, families move to the West Island expressly to access those services. As a side benefit, our community attracts extraordinary citizens to live and work in the community and surrounding region. These are dynamic people who help us grow in so many different ways.

Incidentally, WIAIH has served as an incubator for the development of other local organizations in the same sector, namely, West Island Citizen Advocacy, Placement Potentiel, AVATIL, the West Montreal Readaptation Centre, the West Island Residences for the Intellectually Handicapped and the John F. Kennedy School.

While we are fortunate in the West Island to house a critical mass of organizations like WIAIH, our success in constructing an enviable social and health infrastructure underscores the fact that other regions lack a comparable level of support. In other words, while WIAIH is a beacon of hope and assistance for those suffering from autism and their families, at the same time the organization's success illuminates the fact that in other regions a greater level of need persists and goes unmet.

One should not, for a moment, think that WIAIH has all the resources it needs at its disposal. Whenever I have the opportunity to meet and speak with Natalie Chapman, she reminds me of the overwhelming pressure on our community. She reminds me of the weight under which families are labouring and how diagnosis is not being conducted early enough in those crucial years for children with autism. She reminds me that post-diagnosis intervention still does not occur early enough, and that families desperately need respite.

What is needed today at the federal level, and urgently so, is best captured by the Autism Society of Canada. It says, “We need increased funding for provinces and territories to provide critical no-cost treatment, education, professional training and required supports for Canadians with autism. What is also needed is a mandate for the Public Health Agency of Canada to make autism a national priority by initiating surveillance and reporting, and setting national standards for treatment and service delivery. Also needed is an allocation of significant funds targeted for autism research to Canadian funding organizations, such as the Canadian Institutes of Health Research. Finally, we need improved financial and other supports to individuals with intellectual disabilities and autism, and their families, through the federal tax and labour systems.”

In conclusion, issues of common concern to Canadians from coast to coast to coast need to be addressed through national coordination and with standards of service delivery that are consistent for all citizens, wherever they may live in this great country.

Autism is such a matter of common interest and national priority. Declaring April 2 of each year world autism awareness day would be a small but meaningful step in the direction of eventually, hopefully, creating an effective national approach to learning all we can about autism and providing the services children with autism and their families need, and this as early as possible.

World Autism Awareness Day Act
Private Members' Business

June 19th, 2012 / 5:45 p.m.
See context

Edmonton—Mill Woods—Beaumont
Alberta

Conservative

Mike Lake Parliamentary Secretary to the Minister of Industry

Mr. Speaker, today I am not going to get into a whole bunch of statistics and definitions. Instead I am going to talk about my own experience as the father of a now 16-year-old boy with autism, my son Jaden. Before I do that, though, I would like to extend some recognition.

First of all, I would like to thank Senator Munson for moving this important legislation forward in the first place. I would like to thank my good friend and colleague from Kitchener—Conestoga for sponsoring the bill in the House.

I would particularly like to thank the Minister of Health, who declared that as of April 2, 2009, each April 2 will be known as World Autism Awareness Day in Canada. That is an important step. That is what the bill addresses in legislation today.

I would also like to thank colleagues from all parties, who have been very supportive of my family. They have met Jaden and wanted to know more about the situation, know more about autism, so that they can be more informed as they go out into their own constituencies.

First and foremost, I want to thank my son Jaden, who is a tremendous example for me and obviously one of the most important people in my life.

I also want to thank my wife Debi and my daughter Jenae, who hold the fort down at home.

My daughter is now 13 years old. When she was four or five, she did a little interview with the autism newsletter. One of the things that she said is “I'm Jaden's little sister, but I'm like his big sister”. She went on to say that she had to protect him and keep him safe from things like permanent markers and hot stoves. At 13 years old, Jenae is still keeping Jaden safe.

My proudest moments as I think about my daughter are the moments when she does not know that we are watching. We hear her playing games with Jaden, interacting with him, keeping him out of harm's way or helping him because he is upset with something and trying to talk him through it. She is an amazing little big sister to him.

Why is autism awareness so important? It is important because early diagnosis is critical for people with autism. There is a short window of time when kids are young. We have more and more information about autism. There has been more and more research that shows that early treatment is absolutely essential for people with autism. In order to get that early treatment, we need doctors to be aware of the signs of autism, we need parents to be aware of them and we need the broader public to be aware of them.

Looking back in our own circumstance, when Jaden was 18 months old and knowing what we know now, we could have recognized the signs of autism had we been more aware, but even at the time, the doctors suggested that some boys just talk late, so they sent us for speech training and workshops and things like that.

It was six months later, after we had lost six months of that window, that we read a book about autism and recognized what we were dealing with. It was autism. A cousin mentioned it to us as well. It was six months later that we finally received a diagnosis. Thankfully, that delay does not happen as often today as it did over a decade ago, because people are more aware.

Another reason that awareness is so important is that families need support. I remember one particular circumstance when I was having a discussion about respite with someone who knew my son had autism but did not know what we dealt with on a daily basis. He asked me, “Why should the government provide a babysitter for your son?” It was one of those things that made me realize that people do not understand it the way we live it. They do not see the 24/7 stress that families are under, the constant need to be on high alert for fear of the child's safety or for the other kids.

Jaden is like a three- or four-year-old in a 16-year-old's body now. The difference from when he was three and four, though, is that he is much quicker and much stronger than he was. When he sees a dog across the street, he still has no concept of traffic, but he can get to that dog very quickly. If we are not paying constant attention to him when we are out, he will just run across the street if he sees a dog.

In fact, when we were on Parliament Hill a couple of years ago for Canada Day and a man was walking a German shepherd dog across the lawn, we had our eyes off Jaden for a second, and he bolted to this German shepherd. Before we had time to even think about it, he had grabbed the German shepherd by the neck and was sticking his face into the German shepherd's face.

It turned out that the man who was walking the German shepherd was a security guard and the German shepherd was a trained dog. The man happened to know Jaden and made sure he got in between so that the dog would not react to him, but we can imagine if it was some other dog; Jaden would have no awareness of that.

The same things apply in relation to water, traffic and those types of things. We have to be constantly vigilant that Jaden does not get himself into trouble because he sees those things like a three- or four-year-old would see them, not like a regular 16-year-old would see them.

We also need to be aware of the things they do see but maybe do not understand. A common story is that a child at six or seven years old looks like any other child, but when the child throws himself down in a grocery store or acts up in a restaurant, people wonder why the parents are not disciplining the child or doing something about it. There was a story of a family that got kicked out of a restaurant in Edmonton because of a situation like that. As families, we need people to understand that.

There are some funny stories that go along with that, and every family has their own. In my case, I remember one particular time when Jaden was about eight years old and we were walking through a parking lot. He walked up behind a lady who was walking on her own and grabbed her hand. Jaden was a very cute eight-year-old, and she thought it was very cute. Then he proceeded to take her fingernail and pick his teeth with it, at which point she was not thinking he was quite as cute any more and went running off with a little scream. There are moments like that.

There was the time that I was at an Oilers game. I worked for the Oilers before I was elected and decided to take Jaden to an Oilers game. He was probably in that same timeframe of six or seven years old at the time. We were sitting in the seats watching the game and everything was good. All of a sudden, out of the blue, he decided to reach over the shoulder of the five-year-old girl in front of him and grab the ice cream off of the top of her cone, stick it in his mouth and eat it straight out of his hand. It took a few seconds for me to explain to the father what was going on, and, as usual, he was good with it once he understood.

These are the things that happen, and we need people to understand.

When Jaden was 13 years old, just three years ago, he went through a time when he was experiencing an absolutely debilitating anxiety, a time that was very difficult for us as parents. There were times when he would go through two hours of absolute stress and anxiety. His body would get rigid, he was scared and he could not explain what was going on because he could not talk. We would just have to hold him and hope the anxiety subsided. It was a very difficult time for the family. Those are the things that people do not see, and sometimes family members need a break from those things. Families need people to understand what they are going through.

I notice, as always happens when I talk about my son, that time is slipping away quickly, so I am going to move on to a couple of other things that I want to talk about. I want to talk about people with autism contributing and give one more example from our family's life.

As people with autism get older, they can contribute in vocational things. In Jaden's case, he can work in the library. There are many who can contribute as artists or researchers or computer programmers.

Something that has happened recently in Jaden's life that has been really meaningful to us is that he is now in a regular grade 10 classroom, and his classmates chose to include him in a musical theatre production of Oliver that they were doing. These kids practised for dozens and dozens of hours as they got ready for this performance. One would think that they would be laser-focused on having the smoothest performance they could possibly have. The choreography was fantastic and took a lot of work to coordinate. However, instead, they invited Jaden to be a part of this process.

There was a scene of Jaden dancing a little off the beat from the rest of the kids, from time to time meandering a bit to the side of the stage and wandering off. One of his friends grabbed his elbow and brought him back to the rest of the group so that he could continue to participate. They worked hours helping him to understand what the steps were and to include him in what they were doing.

I cannot say how much it meant to my family and Jaden that they included him, but also how much it meant to those kids in the end, who really benefited from learning that important life lesson at that stage in their lives, a life lesson that will move them to include people in employment in the future and to look for opportunities for people like Jaden to contribute throughout their lives.

I will conclude by recognizing all of the people who have autism themselves, as well as their family members and friends who live with this disorder each and every day of the year. I want to let them know how much I admire them for their perseverance and for what they contribute to make the lives of those around them better. God bless them.

World Autism Awareness Day Act
Private Members' Business

June 19th, 2012 / 5:55 p.m.
See context

NDP

Matthew Kellway Beaches—East York, ON

Mr. Speaker, I am pleased to rise in the House today to speak in support of Bill S-206, An Act respecting World Autism Awareness Day.

On December 18, 2007, the United Nations General Assembly, through resolution 62139, designated April 2 from 2008 on as World Autism Awareness Day. My colleague for Vancouver Kingsway has already put forward Bill C-351, which also calls upon the Government of Canada to recognize April 2 each year as World Autism Awareness Day. In a sense, this bill is playing catch-up. Nevertheless, obviously the value of such a designation is in raising awareness about the condition, the challenges faced by those living with an autism spectrum disorder and the importance of improving research, diagnosis and treatment options for this disorder.

Autism is the most common neurological disorder in children and impacts many Canadian families, with as many as one in every 110 children having some form of autism spectrum disorder. It has been estimated that there are approximately 35 million people living with autism around the world.

In Canada, although there is a lack of detailed epidemiological data, there are currently around 48,000 children and 144,000 adults with some form of autism. It is known that the rate of autism has been increasing without explanation with each passing year; in fact, it is estimated that the rate of autism has increased about 600% in the last 20 years. When one looks at this data, what becomes obvious is that autism is a widespread and growing issue about which we know very little.

What we also know is that living with it is an enormous challenge. Friends of mine, Michelle and Brett, have a beautiful daughter, Tennyson, just Tenny to friends and family. Tenny is the younger sister to Ethan and Stephanie.

Michelle, Brett, Steph and Ethan's love and devotion for Tenny is infinite, unconditional, inspiring and so very patient. The image that stays with me is one that has repeated itself many times over the years. It is of Brett and Tenny passing by my house slowly, Tenny with her headphones on, absorbed and happy in her music, and Brett happy alongside, enjoying the day in the company of his beautiful blue-eyed companion Tenny.

However, I asked Michelle and Brett to share with me, so that I could share with members, what it is like to raise Tenny. This is what they would like members to know:

“Our daughter Tennyson is 11 years old and she is one of our biggest joys. However, having an autistic child presents many challenges and stresses for our family.”

“Tennyson requires constant assistance with eating, bathing, dressing, toileting, et cetera. As if this is not enough, every stage of her life requires an almost full-time effort to navigate the system for what she needs. During her preschool years we spent countless hours and dollars on IBI therapy, as the Ontario government wait-listed Tennyson for three years.”

“Today our biggest challenge is finding appropriate schooling for her now and in the future. Today Tennyson attends a remarkable TDSB school, Beverley. Finding our way to Beverley was fraught with bureaucracy—as if we have time. We need more schools like Beverley with OT, speech and language, communication tools, and excellent staff under one roof.”

“Our imminent fear is finding a comparable high school. Oh, and what about the future? Proper care, affordable care, safety, et cetera. Families like ours have little time, money and mental energy. We need help.”

I should note for the House that those last three words, “we need help”, came to me in upper case font with more than one exclamation mark attending them.

This is the unvarnished truth of the matter. The love of a family can overcome a lot. Knowing Michelle, Brett, Steph and Ethan as I do, Tenny will never want for that in all its manifestations. However, it is our love that is also required, not just for autistic kids and adults but for the moms and dads and brothers and sisters who need our support.

While it is important to bring awareness of the impact of autism on the lives of so many Canadians, we collectively, through our government, are still failing to show measurable and meaningful support for those living with autism spectrum disorder. Instead, the government chooses symbolism over real action.

There is much that we can and should do. Through the testimony of witnesses at both Senate committees and the Standing Committee on Health of the House, we as parliamentarians have been told directly what needs to be done, or at least where we need to start.

We can start first with my colleague from Sudbury's private member's bill, Bill C-219, An Act respecting the establishment of a National Strategy for Autism Spectrum Disorders. This very simple but important bill would, among other things, establish national standards for the treatment and delivery of autism-related services and create a system to monitor autism prevalence.

My colleague from Sudbury has a second private member's bill, Bill C-218, that would also qualitatively change the lives of kids and adults with ADS as well as their families. Bill C-218, An Act to amend the Canada Health Act (Autism Spectrum Disorders), would mandate the inclusion of ABA and IBI treatments under the Canada Health Act.

These bills would go a long way to redress what Kathleen Provost, an executive director with the Autism Society of Canada, called in her testimony before the Subcommittee on Neurological Disease of the Standing Committee on Health, “a two-tiered health system for Canadians living with an ASD”.

According to Ms. Provost:

There is a health system that is inconsistent because of where you are, what province you live in. There's also a health system that's not equally accessible....We seem to have a public health system versus a private health system.

Ms. Provost cited in evidence the difference in cost of diagnosis between provinces. She also talked about the extraordinary cost of treatment, a cost so high that it was financially ruinous to the majority of Canadian families.

The multidisciplinary approach necessary for the treatment of autism is not covered currently under the Canada Health Act. However, it can cost families well in excess of $50,000 per year. Those kinds of costs inhibit, first, early diagnosis and, second, effective treatment once diagnosed. That means so many kids and so many parents are forced financially to live and struggle with a condition and in circumstances that can be ameliorated and treated.

There are other solutions as well that are readily available to us to relieve the stress, both emotional and financial, for families. These have to do with income tax treatment and amendments to labour and employment standards.

At the end of the day, what is at issue and what is absent here is federal leadership on the issue of autism.

The last word on the federal role I give to Kathleen Provost, because she captured this issue so well in her testimony to the health subcommittee. She said:

We think the federal government is in a unique position as a national facilitator engaging provinces and territories. The federal government can stage and maintain a national agenda for autism....The challenge before us is to find effective ways to leverage the strength of our federal-provincial system to advance the autism agenda in Canada so we can provide universal access to treatment and services.

I will support Bill S-206, An Act respecting World Autism Awareness Day. However, it needs to be remembered that those who need our support are already aware all too intimately, and too often painfully, of the challenges of autism spectrum disorder.

In the words of Tenny's mom, Michelle, “They need help”. Therefore, I urge the government to get on with what the Canadian government is supposed to do, which is supporting Canadians who need support.

World Autism Awareness Day Act
Private Members' Business

June 19th, 2012 / 6:05 p.m.
See context

NDP

Matthew Dubé Chambly—Borduas, QC

Mr. Speaker, I am pleased to rise in this House in support of Bill S-206.

On a personal note, I too would like to commend the Parliamentary Secretary to the Minister of Industry for sharing his personal experience. I think stories like those are rather exceptional, especially for someone like me who has never had this personal experience. I want to commend the hon. member and wish him well.

It is exactly this type of situation that makes a seemingly symbolic gesture so important because, like many mental or brain-related illnesses, there are many unknowns. Increasing public awareness gives us the opportunity to do more research and more work to help the friends and family of individuals with autism. Their family members become their caregivers for their entire lives. It is not like other situations where people become ill at a certain age and their family needs to care for them at that stage. In this case, we are talking about children whose families want to watch them grow like any other child in this world and in our community.

I would like to take a more personal approach to this topic by looking at the work of Emergo, which is located in my riding. This organization is very well known in Quebec and provides respite services. One of their summer respite camps is located in my riding of Chambly—Borduas, in Otterburn Park.

A very long time ago, when I was in elementary school, I had the opportunity to visit this camp because Emergo shares this land with the public. The elementary school I went to had rented part of the camp for us to celebrate the end of the school year. It was in Les Bosquets. That was my first experience meeting kids with autism. It really opened my eyes, because I saw people and the organization working with them. Even at a young age—I do not want to delude myself by saying that I understood the complexity of the issue—I thought it was something special to see. That really helped me much later when I became the member of Parliament for the region. I was able to return to Les Bosquets and visit this organization, this time to work with them and help them with their work.

The respite service they offer gives parents and family members of children with autism the opportunity to take some time off in the summer because caring for an autistic child is a major challenge. As I said at the beginning of my speech, we can never truly understand what parents and families in this situation are going through. We can never understand and speak on their behalf because this is such a unique challenge. Emergo is one of the organizations that has the courage and conviction to help these people, and the work it does is very important.

When I had a chance to meet with representatives of the organization, they had a lot to say about their efforts to raise awareness. During the most recent election campaign in Quebec, people were very interested in the interviews with the political party leaders on Tout le monde en parle. During one episode featuring an interview with a party leader, there was another guest, Roxanne Héroux, a former LCN reporter, who has two autistic children. She had a lot to say about the importance of community, family, parents and others working together, raising awareness among themselves and supporting people who are coping with these problems.

She talked not only about autism, but about all kinds of problems and crises that families may go through with their children. It was extremely touching as testimony to this experience and a powerful interview. When I talked about the interview with people from Emergo, they said it was very interesting that I was touched by this interview, because this demonstrated to me just how much more awareness is needed among the general public so that we can provide those affected with the help they need. There is nothing glamourous about Emergo's work. Unfortunately, it gets very little recognition in the community. This is not because of bad faith, or because the community does not want to recognize that work.

It is primarily because people are simply not aware of everything that goes on or the various services that are available. The very fact that people are unaware undermines Emergo's work, because it makes it difficult for that organization to secure funding.

I must say very sincerely that I would not dare play politics with this. In my opinion, the funding problem is not necessarily the problem of any one level of government or any one political party. I think this is a collective problem that we must all face together.

People do not understand, and it is the responsibility of parliamentarians, the members who represent various communities, to educate them. That is the purpose of this bill. Members from all political parties realize that this is merely a first step, but it is an important step, because it opens such an important dialogue.

April 2 is already recognized as World Autism Awareness Day elsewhere around the world. I think it is very important that we follow suit and do the same here in Canada. Some degree of coherence and consistency is needed in the message in order to continue this work.

I would like to talk about another very personal example, one not necessarily related to autism. However, it relates to caregivers, who face similar challenges. I spoke a little about this when I talked about a Liberal colleague's bill to establish a national epilepsy day, which was also intended to promote awareness.

I do not want to make too many comparisons because, as I said earlier, I plead ignorance. I do not know very much about the two disorders. I have heard from caregivers and families who courageously deal with these challenges. I am going to share these stories because, although they unfortunately show how little I know about these challenges, they are the reason why I support the bill.

I will not name the man in question, to protect his privacy. I met this man just before Christmas, during the holidays, when I was grocery shopping in my riding. It is sad that it was at that time of year. This man is a family friend. He told me that his wife had suffered from a malignant brain tumour at the end of her life and that he had become her caregiver. He had to take care of her at the end of her life. It was very difficult because brain cancer can affect “normal” life in different ways. The word “normal” is in quotes because it not the right word in this case.

What society considers to be normal behaviour is not the norm. In my opinion, a parallel can be drawn with the situation we are discussing today. Once again, I am being very careful. I am not saying that these are not normal behaviours, but those are “society's rules”.

The man in my example said that it was a very trying experience. What I want to bring to the debate today is that the man told me he did not blame any political party or ideology. The issue is that there is a certain lack of understanding behind our way of proceeding.

Such occasions allow people to rally behind a non-partisan issue and make an initial symbolic gesture in order to improve our understanding in the hope of providing better assistance. That is what our society does best.

That is why I am very pleased to support this bill. This is not an issue that I fully understand, but I commend the work of Emergo, an organization that does so much for my riding and with which I want to continue working. I am committed to continue supporting it and to continue supporting, in a broader sense, my colleagues who will introduce similar bills. This is a very important issue.

I also want to take this opportunity to commend my colleague opposite, who lives with this situation, and all Canadians going through this experience, this challenge, in the shadows. I commend their courage and I want to thank Senator Munson and the hon. member who introduced this bill in the House.