44th Parl. 1st Sess.
December 1, 2022 10:00AM
, seconded by the member for Don Valley East, moved that Bill S-203, An Act respecting a federal framework on autism spectrum disorder, be read the second time and referred to a committee.
He said: Madam Speaker, it is an absolute pleasure to stand here to discuss Bill S-203, which came to us from the Senate. It was unanimously passed by the Senate before it got to us here.
70 words
All Topics
- Hear!
- Rabble!
- add
- star_border
- share
As members know, I do not speak with the authority of someone who has autism. I do not speak with the authority of a scientist and the folks who do unbelievable work, many of them right here in Canada, leading the world in the science around autism. I speak as a father of an incredible young man, very familiar to people this place, named Jaden, who was 10 years old when I was first elected, and last month he turned 27. He is an energetic young man who brightens up this place when he runs around giving people high-fives, as he is so happy and excited to meet folks.
I will probably share a little more from the heart, but I will start with the technical details and touch on what the bill would do.
As was mentioned in the introduction, this is a proposed act respecting a federal framework on autism spectrum disorder, and I am not going to get into every aspect of it. The bill is just over two pages long, French and English, so it is not super long. Importantly, it leads off with a statement that “The Minister of Health must develop a federal framework on autism spectrum disorder.” It then lays out the measures to be provided, which folks can take a look at on the Internet and see the bill there.
Its real strength, I think, is in its accountability mechanisms, and towards the end it talks about the minister. It says, “Within 18 months after the day on which this Act receives royal assent, the Minister of Health must cause to be tabled in both Houses of Parliament a report setting out the federal framework on autism spectrum disorder developed under section 2.”
Further to that, later on it says:
4 (1) Within five years after the day on which the report referred to in section 3 is tabled in Parliament, the Minister of Health must cause to be tabled in each House of Parliament a report that sets out
(a) the measures from the federal framework that have been implemented and their effectiveness in supporting autistic persons, their families and their caregivers; and
(b) with respect to any measure included in the federal framework that was not implemented, the reason it has not been implemented and the timeline for its implementation.
I think there is a really strong accountability framework.
For anybody who has been working in this area over the years, there is a real impatience right now. It has been many years that we have been talking about a national strategy. However, here we are today, and I think it is an opportunity to move forward, with some of that impatience, yes, but with real hope for the future for people with autism in this country and the people who care about people with autism.
My other hope is that, in addition to whatever strategy the government comes forward with, and there is indication that the government will be coming forward with a strategy maybe even ahead of the timeline outlined in this bill, it will be both substantial and organic. I think part of the problem over the years is that we have been waiting for perfection, waiting for every box to be checked. Therefore, we have had delay after delay. We have to recognize that we are never going to have unanimity, but there is a lot of common ground. If we work together towards that common ground, we will be able to make some progress. Then, through constant consultation with autistic Canadians, scientists and the broader community of families and caregivers, we can make whatever it is that we come up with stronger and stronger all the time.
I have a few thanks to give that are worth mentioning.
First, this bill did come from the Senate, where it was supported unanimously but largely led by Senator Housakos and Senator Boehm. I offer a huge thanks of appreciation to Senator Housakos and Senator Boehm. Also, I would be remiss if I did not thank Senator Jim Munson, now retired from the Senate, who led the charge on this for years and years.
I also want to thank colleagues from all sides of the House. I have been so fortunate over the years as we have worked on these things to have support from my own colleagues. As well, today, this bill is seconded by a Liberal colleague, whom I have had the chance to work with in his previous life when he was on the provincial side of things, more behind the scenes, trying to find some common ground when we could. My experience is that we have had so many people contributing in that way.
I thank everyone who has contributed to Jaden's life: his sister Jenae, his mom Debi, his grandmothers Helen and my mom Bonnie and her husband Dale, and all of the people who have surrounded him over the years.
I am going to turn to the second half of my speech, where that common ground, in my experience, lies. It is pretty straightforward. As we have conversations with people across the country and around the world, there are some really common areas where there is a lot of work that needs to be done and is critical to achieving the best outcomes for autistic people. That is diagnosis and early help. Some people say early intervention or early therapy, whatever it might be, but a good common ground word would be help for people. There is education, employment, housing. The sixth thing that is a little more vague but we all are concerned about is this idea of what happens when we, as parents, are gone. Are we going to have people around our loved ones who are going to care for them like we cared for them? That is a critical question.
Two of the things that I have kind of focused on or learned as I have gone down this path, both through my experience with Jaden and in talking to lots of other stakeholders, particularly autistic people themselves, are the ideas of inclusion and autonomy and what those things mean. If I think about autonomy for Jaden, it is a bit tricky because Jaden has real difficulty with abstract things like danger. Jaden could not have full autonomy because he might run into a street. He loves dogs. He might see a dog and run across the street to grab the dog by the side of its cheeks and pull its face into his face so he can smell the dog's breath, feel the dog licking his face and he would not even be aware of traffic as he is running. There are all sorts of danger awareness issues.
I like to think about maximum autonomy. With Jaden, when I think about maximum autonomy, I think about the fact that too often we are impatient, trying to figure out what he wants or presuming we know what he wants. We do not take the time to really listen to him. What I have learned over time and my advice to loved ones of people with autism is to really try to get down to their level, in a sense. We should not force them into our world, but get down in their world and really take the time to try to understand what they are trying to say.
When Jaden grabs my face and says, “Ba, ba, ba, ba, ba, ba” super intently, he is trying to tell me something, and it is incumbent on me, as someone who cares for him, to try to understand what he is trying to tell me. That may be through his body language, his facial expressions. Sometimes his skin tone is a little different. Sometimes he is paying attention to and looking at something that is bothering him, like we forgot to grab something that is important to him, such as his iPhone or something like that. He is always trying to communicate something. It is incumbent on us to try to find out what that is if we are going to maximize people's autonomy.
I will talk about inclusion. I talked about maximizing autonomy for Jaden, but we talk about inclusion as well. Full inclusion is a really tricky concept. Not every fully inclusive situation is perfect in every scenario for every single person, but that goes for us as well. There may be things that we do not prefer or ways that we prefer things to be that are not the same as everybody else wants.
As we look at inclusion, I think about inclusion in Jaden's case. Jaden was included in a regular classroom, but he was not included in the same way as every other kid by himself in that classroom. He had an assistant with him. It is a bit different, a modification to help him mitigate some of the challenges he had, but he was in a regular classroom from kindergarten to grade 12.
That regular classroom really served him well. He surprised a lot of people. He had kids around him who really saw what he was good at and because they paid attention to what he was good at, they had a chance to realize that oftentimes his abilities surprised them. They were beyond what they might have thought. They had a chance to get to know him because they were in his classroom, and they challenged him.
For him, that was being included in a musical theatre production in grade 10. He was first in a group scene in grade 10, but then he again outperformed expectations, so in grade 11 they gave him a few more scenes. They put him in some sort of dance routines and things like that and taught him to do those things.
Then in grade 12 they did another performance, and one of the girls in the class asked if Jaden could be her partner, her husband, in Joseph and the Amazing Technicolor Dreamcoat. She modified all of the routines to make it look like he was doing exactly what everyone else was doing. That is what inclusion looks like. That is what maximum inclusion looks like. It is people getting to know people and then challenging them. It is embracing their skills and abilities and helping them with their challenges, just like all of us need in this place.
We have so many people who are here to help us in that regard. Not all of us can draft perfect policies, so we have people working in the House of Commons who help us with that from time to time. There are all sorts of those things. We have translators who translate, because not all of us are perfectly bilingual. We are all challenged with something. For people with autism, it is no different from that.
I am going to close by telling a story I tell at the end of my presentations. I do presentations around the world about how we define normal.
About 10 years ago, we had a chance to do an interview. My daughter was 13 at the time and Jaden was about 17, and we had this chance to do an interview with Steve Paikin. Anyone who has done an interview with Steve Paikin, and there are a few of those people in this world, know he can ask some tough questions sometimes. He gave Jenae a heads-up that he would ask her a tough question in the interview, but he had not given her a heads-up as to what it was going to be. He asked her if she sometimes wished her brother was “normal”, like every other kid. He said, “quote, unquote”. He knows Jaden and he knows Jenae as we had done interviews with him before.
Jenae, without skipping a beat, at 13 years old said, “Well, honestly, since Jaden was diagnosed with autism before I was born, I don't exactly know what a normal brother is like, so Jaden kind of is my normal, having autism.” Steve pressed her and asked, “Do you like him just the way he is?” She responded, “Honestly, if Jaden didn't have autism or was, like, cured or something, he wouldn't be the same as Jaden is now.” At 13 years old, as a sister, she said that.
When I am talking to students and am talking about this in front of 500 introduction to psychology students, or whatever the case is, I will point out that in Jenae's case, she did not have a choice. She was born into the family and Jaden was already there, so her normal was kind of set out for her. However, the school they went to from K to 12 had a choice, and it chose to include Jaden in the classroom.
At the time, we thought that was better for Jaden, but every single kid he graduated with, every single kid who was in that school with him, would say their life was immeasurably better because Jaden was included in their class. They learned so much. When they move forward in their lives, the diversity of knowledge they have is so different.
I often like to think of my life and my normal and how we define it. It is almost like, and bear with me here, a video game character. Think of a video game character and imagine a circle as long as we can see, and that is our video game character, and we walk around and experience things in that bubble. Sometimes that is what our life is like. I am 53 years old. My life is like 53 years of walking around in that bubble. Sometimes a TV screen or a computer monitor comes into that world and shows me something from the outside, but that is my normal.
If that circle only included people just like me, first of all, my weaknesses would be the same as other people's weaknesses, so nobody would be there to compensate. Also, my strengths would not be strengths because everybody would have the same strengths. Our world, our normal, is better when we are surrounded by people who come from different backgrounds and who have different experiences. To the extent that we grasp that and include all Canadians in our experiences, our workplaces, housing, education systems and in everything else, we are all going to be better off for it.
I look forward to hopefully passing this bill and creating this better world for all Canadians.
2462 words
All Topics
- Hear!
- Rabble!
- add
- star_border
- share
Madam Speaker, I thank my colleague for his very moving speech.
In my personal experience, I had the good fortune of being involved with a magnificent youth hostel, and the people who helped us during the day were people on the autism spectrum. What a fantastic experience it was. It opened my eyes to the need to include them.
My question is the following. In Quebec, we have so many good initiatives. Is my colleague open to referring the bill to committee to benefit from all the good things happening for people with autism in Quebec's health and social services system?
102 words
All Topics
- Hear!
- Rabble!
- add
- star_border
- share
Madam Speaker, I am loving these questions from all sides. They are hitting the nail on the head. They indicate there is a real understanding of what needs to happen.
The “nothing about us without us” conversation is something that I think we continue to get better at, but we have a long way to go. It is a challenge. There is a segment of the autistic population that is able to clearly communicate what it is like to have autism. There are other people on the autism spectrum in Canada for whom it is a bit more difficult to communicate, but I think that we are all learning that we have a long way to go to include those voices.
I have one more quick comment on that. What is very important is that we make sure we are including indigenous Canadians with autism in that conversation as well, because I think they have been under-represented in many of the conversations over time.
167 words
All Topics
- Hear!
- Rabble!
- add
- star_border
- share
Madam Speaker, I would like to begin by mentioning Mathieu Caron, a man from Sherbrooke whose podcast helped me better understand what it is like to be an adult living with autism. Hi Mathieu.
Today I am talking about Bill S-203, which would provide for the development of a federal framework designed to support autistic Canadians, their families and their caregivers. It directs the Minister of Health to develop a federal framework on autism spectrum disorder. The national framework must identify measures relating to research, culture and tax benefits, among other things. The minister must consult with other relevant federal ministers, civil society groups, and provincial governments and the Government of Quebec, including their ministers of health. Lastly, the bill provides for the tabling of a report in Parliament, as proposed by Quebec senator Marie‑Françoise Mégie, who is also a doctor.
The Bloc Québécois will vote in favour of the bill at second reading so that it can go to committee and be amended in such a way as to respect Quebec's jurisdiction. In my speech, I will discuss the pros and cons of this bill, share examples from Quebec and conclude with a reminder about the importance of investing in health.
To begin with, in 2019, the Minister of Health's mandate letter directed her to “[w]ork collaboratively with provinces, territories, families and stakeholders toward the creation of a national autism strategy”. On October 27, 2020, the Government of Canada announced $1.46 million for the Canadian Academy of Health Sciences, or CAHS, to lead consultations on a national autism strategy. The CAHS report was released in May 2022, and the Public Health Agency of Canada hosted a national virtual conference on November 15 and 16, 2022, to inform the development of a national strategy.
As a reminder, autism spectrum disorder is a neurodevelopmental condition. The term refers to a range of disorders characterized by difficulties with social skills, repetitive behaviours, speech and non-verbal communication. Individuals on the autism spectrum may also have co-occurring health conditions that affect their overall physical health, including their mental health.
According to the Public Health Agency of Canada, approximately one in 50 Canadian children and youth, or 2%, have autism. That number has gone up over time. In Quebec, the annual prevalence of ASD in children aged one to 17 has been growing strongly, rising from one per 1,000 in 2000-01 to more than four per 1,000 in 2014-15. This prevalence differs according to the child's sex and age. It was 7.3 and 1.8 per 1,000 among boys and girls, respectively, in 2014-15.
People on the autism spectrum need support in various areas, such as housing, employment, education and, of course, health services. Within its areas of jurisdiction, the federal government can play a role in supporting these people and their families. Autism intersects with other identities such as race, ethnicity, culture, socio-economic status, gender and sexuality, and that intersectionality creates diversity in experiences and needs that must be taken into account. People with autism do not always feel safe or meaningfully included in their communities. Such experiences can have harmful outcomes to their health, safety and quality of life. We must work harder to include them.
Stigma and discrimination can be addressed by shifting public attitudes towards autism acceptance and awareness through public campaigns, social contact, training, and education programs. The physical and emotional safety of people with autism can be fostered by promoting autism-inclusive, neuro-affirming and accessible spaces, programs and understanding in local communities. Best practices for suicide prevention can also be adapted to better meet the needs of individuals with autism at risk for suicide.
Improving the accessibility and inclusion of public transportation, recreational facilities, leisure programs, and technology can enable community participation of people with autism. Quebec and every province and territory offer autism diagnostic and support services, yet there is wide variability in what is available, which can contribute to delays and disparities. Some people with autism are particularly disadvantaged, such as those living in rural and remote areas, equity-seeking groups, and adults with autism. Research to develop valid and meaningful strengths-based diagnostic tools and improve access to diagnostic assessments for adults with autism is also suggested.
Adopting family-centred services available across the lifespan can promote the health and well-being of the entire family. It also empowers families to be involved in service delivery.
Young autistic children benefit from early access to supports and services because this is a time of significant development. Equitable access to school and community supports across a range of life domains can promote academic success, life and social skills, and improve mental health.
Implementing health and education transition policies and practices may help manage and prevent mental and physical health challenges and promote better adult outcomes.
However, research about autism in adulthood is limited. More than half of Canadians with autism rely on disability benefits.
Academic supports and accommodations available in post-secondary institutions do not always meet the diverse range of autistic students' needs and abilities, which means that they are still not enrolling to the same extent as non-autistic and other disabled students.
Some ways to create more inclusive workplaces, which is also important, and to improve employment outcomes can involve providing autism-inclusive supports and accommodations, giving access to supported work experience and internships, addressing benefit disincentives, and promoting workplace autism acceptance. Mr. Caron spoke at length about this with me.
With the limited availability of affordable housing in many regions, autism-inclusive housing is in even shorter supply across Canada, and the need will only grow.
Second, with its generous social safety net, Quebec already offers a wide range of services for individuals with autism. The Bloc Québécois hopes that the strategy will recognize these efforts, and that Quebec will not be penalized for its generous social benefits.
We also have some excellent examples in Quebec. Les Grands Ballets Canadiens de Montréal offers a program called “dance for well-being”. This great model contributes to the well-being of people living with autism spectrum disorder, their families and caregivers through the benefits of dance.
Quebec offers a wide range of services for people with a physical or intellectual disability or an autism spectrum disorder to develop, maintain and compensate for their disabilities and promote their autonomy and social participation. These services are also intended for family and loved ones. They are divided into three categories. One category is local services that are often offered in the individual's living environments, such as the home, school or workplace. They aim to compensate for functional disabilities and reduce the risk of harm to ensure the safety of activities related to lifestyle. Examples include home support services, residential services, support for meaningful and rewarding activities, and support services for family and friends.
I would like to highlight the work that has been done for the past 45 years by the Fédération québécoise de l'autisme, a provincial group of organizations and individuals who are concerned about the interests of people with autism, their families and friends. This federation defends their rights, supports community life, informs and instructs Quebeckers on issues related to autism, and participates in research.
There are 16 regional autism associations in Quebec. Associate members include other associations, early childhood centres, rehabilitation centres, school boards, schools, hospitals and private clinics. Everyone works together. The regional autism associations are community organizations primarily made up of parents, and their shared mission is to promote and defend the rights and interests of people with autism in order to enable them to lead a dignified life and achieve the greatest degree of social autonomy possible.
Third, I certainly must mention the fact that the Bloc Québécois is adamant that delivery of health services is not a federal jurisdiction. It refuses to allow the federal government to impose its standards and ways of doing things on Quebec and the provinces.
As such, the Bloc Québécois wants to emphasize that one component of the national strategy, timely and equitable access to screening and diagnosis for autism spectrum disorder, is not under federal jurisdiction. When it comes to delivering health care services, the best thing the federal government can do is increase health transfers. That is why the Bloc Québécois will seek to amend Bill S‑203 to ensure that it respects Quebec's and the provinces' areas of jurisdiction.
In closing, I would be remiss if I did not mention the federal, provincial and Quebec health ministers' meeting, which took place from November 7 to 9, 2022, and ended inconclusively. The only solution is higher transfers.
The Bloc Québécois supports Quebec and the provinces' unified demand that the federal government raise health transfers from 22% to 35%. This permanent increase is what will help people living with autism spectrum disorder. Again, only a 35% contribution from the feds will enable people to live with autism spectrum disorder.
In closing, I thank the Granby association for intellectual disabilities and autism. I had the opportunity to visit this organization recently, and the people there are doing absolutely terrific work. Quebec has plenty of wonderful organizations like this one. I hope the federal government will provide health transfers so that we in Quebec can continue to help them and help people with autism.
1617 words
All Topics
- Hear!
- Rabble!
- add
- star_border
- share
Madam Speaker, I am honoured to speak to Bill S-203, respecting a federal framework on autism spectrum disorder.
Before I speak about this really important bill, I want to recognize that today is my grandson's birthday. I want to wish him a very happy birthday. I wish I could be with him. As so many of us in this place know, we miss a lot of important days. It is hard for me to miss his birthday today, so I just wanted to wish him all the best.
I want to give many thanks to the member for Edmonton—Wetaskiwin. I know about his advocacy. I have certainly seen this bill in this place before. I hope that we finally get it through. It is so important.
I think the basis of this is really about how we look at this whole country and make sure that everyone feels like they belong. One thing that is very clearly a challenge in a country as big as ours is that often different provinces and territories have different services that do not always meet the need. It is really important that when we look at this framework, we understand that by bringing everyone together. We want to see the best supports in place for those living with autism spectrum disorder and for those who love them the most.
Whenever one of our fellow members brings their human experience, their lived experience, to this place to say, as a person who lived through these realities, here is a way we can make life better for everyone, we should all pay attention. We should all listen and make sure that when we speak to this issue, we speak in a collective voice. I certainly hope that is what happens.
This really talks about having a national framework and making sure there is a timely and equitable process for people to access screening and diagnosis so that they are able to access the supports that are there. It is also so much about providing good financial supports. Often folks living within this group have challenges. There are extra needs. We want to make sure that people have the supports they need to do this well and that there is support for caregivers. There is nothing worse than seeing people who are working so hard giving all of that care and they burn out because we do not have the proper supports in place for them. We do not want to see that happen. We want there to be success where there should be success.
This also talks about having meaningful research and the resources there to provide that research so that those services are there. In that way, our communities can do better and we can provide an adequate service, community connection, so that people can succeed.
I often think about this. I think about how we can pay attention to what is happening to all of the people in our communities so that no one gets left behind. I think about how we can take the time to notice where those blocks are and remove those blocks so that we can have that wholesome support.
Public education is part of this framework. That is incredibly important. It is only with education that we draw so much more awareness and allow people to hold this information. It creates an environment of curiosity. That is really important. I cannot say enough from my perspective about how much we need to have curiosity so that when somebody is a bit different from us, instead of us being afraid, we really open doors, ask questions and learn how we can work with people in a more meaningful and profound way.
What we know based on so much research is that people in our communities have been left behind. It is shameful that in this country things fall apart. That really worries me.
I often think of Maya Angelou, who is a great hero of mine. She used to say that when we know better, we do better. That is why public education is important because, hopefully, the more we know, the more opportunity we can see, the more doors can be opened and the more inclusive our communities will become.
We also know that, if there is a co-occurring condition, it is even harder for families to be successful. There is a complexity, and added challenges, that we need to address, which is part of the reason this framework is so important. It brings people to the table to talk about the co-occurring conditions and what they mean going into the future. If we are going to provide and build communities that we can be proud of, a country that we can be proud of, we really need to make sure that that is done.
We know that resources around knowledge and research are desperately needed. We also know that rural and remote communities are often challenged to provide the services. This is a big concern for me. For myself, representing a rural and remote community, I see all too often that the services that are desperately needed across the board are just not there, and the people who are trying to provide those services are doing their very best. However, often when we look at service delivery, we forget that broad areas with lots of travel for service providers becomes very challenging, and asking families to travel big distances is another challenge.
We need to be looking at this. This is really important. I have spoken to people in my riding who deliver services, who work with families, and they talk about this repeatedly. They need more time. They need the right services in place. We need to find pathways so we are not sending families far away from home to get help because it just adds another burden. It is harder to get ahead. It is harder to do the everyday things of life. It is harder to maintain employment, sometimes, because of the high needs and care that are required.
I really hope that, when we look at this framework, we are really attentive to making sure that the needs that are out there are supported, regardless if people live in a more urban centre or in a more rural centre.
One of the things that is so important about this bill as well is that it talks about that coordinated effort, bringing all levels of government together to make sure we are not seeing overlap, and where there are gaps, identifying them and finding the resources to fill those gaps. This is so important.
I am grateful to be here to speak to this bill. In closing, I just want to say that the most important part for me, and I think we are almost there in this bill, is the concept of “nothing without us when it is about us”. I need to be very clear that is something the NDP will be making sure of. What we do not want to see happen is a framework put into place where people who are not living this every day, who are not supporting it every day, are having more of a say than those who are experiencing it.
The NDP will be supporting this bill. I look forward to seeing it finally getting through this place and out into the country so we can see better supports, and identify those key challenges, to building a better Canada for everyone.
1263 words
All Topics
- Hear!
- Rabble!
- add
- star_border
- share
- menumenu
- notificationsnotifications
- home
- mailmail
- searchsearch
