THE STANDING SENATE COMMITTEE ON SOCIAL AFFAIRS, SCIENCE AND TECHNOLOGY
EVIDENCE
OTTAWA, Wednesday, March 23, 2022
The Standing Senate Committee on Social Affairs, Science and Technology met with videoconference this day at 4 p.m. [ET] to study Bill S-203, An Act respecting a federal framework on autism spectrum disorder.
Senator Patricia Bovey (Deputy Chair) in the chair.
[English]
The Deputy Chair: I am Senator Bovey, senator from Manitoba and deputy chair of this committee. We are beginning the study of Bill S-203, An Act respecting a federal framework on autism spectrum disorder.
This proposed law provides for the development of a federal framework designed to support autistic Canadians, their families and their caregivers. It provides that in developing a national framework, elements to be included are a consultation process for developing the process, the creation of a conference to develop the framework, the tabling of the federal framework and reports to Parliament following the publication of the federal framework.
I want to warn us all that our end times for each panel today are non-negotiable.
I would now like to introduce our first witnesses, the Honourable Senator Leo Housakos, sponsor of the bill, and the Honourable Jim Munson, former senator and a long-term advocate for autistic individuals, their families and their caregivers.
I invite Senator Housakos to begin his presentation, followed by former Senator Munson. As it is our current practice, I would like to remind each senator that you have five minutes for your question and, witnesses, that includes your answer.
Hon. Leo Housakos, sponsor of the bill: Thank you, chair. I’m so honoured to be before you here as a witness and particularly so with Senator Munson, of course, who, when I came here, was a champion when it came to mental health issues and particularly fighting for autism. He still is a champion and always will be in my mind.
Colleagues, thank you for treating this bill so expeditiously and thoughtfully, and thank you for the opportunity to come before you. We talk a lot in the Senate and beyond about the groundbreaking report we issued almost 15 years ago titled Pay Now or Pay Later: Autism Families in Crisis. It outlined the need for a federal framework for autistic Canadians and their families 15 years ago, colleagues. It’s been a long time. It seems like yesterday, but it’s been a while. This legislation is a labour of love in many ways.
I’ve been fortunate to take part in many events right here in the Senate focusing on bringing attention to the issues facing autistic Canadians and their loved ones, and many of those events were spearheaded by Senator Munson. I’ve also worked on Children First. We Can. It’s a fundraiser in my own town of Montreal that benefits the amazing school of Giant Steps, a resource centre. I see that Senator Loffreda is on this committee. He has worked diligently with me in support of Giant Steps.
Montreal, as many of you may already know, is also home to an incredible research centre called the Transforming Autism Care Consortium. Like so many of you in this room, and, of course, online, my family has been touched personally by autism. What it has taught me is that autism itself doesn’t limit any individual. On the contrary, autistic persons have their own potential, as does every single individual.
What too often limits autistic people from realizing their potential is the lack of resources, lack of opportunity and the lack of a framework in our society.
This is what this legislation aims to provide, and doing it in a way that ensures equal accessibility to those resources and opportunities without taking a one-size-fits-all approach. Designing and implementing a federal framework should not be seen as trying to fit everyone into one silo. It should not be a cookie-cutter approach, and it certainly should not be seen as limiting provisions and research already in place and available.
What a federal framework should do is ensure that no matter where an autistic Canadian is geographically in our country, or where they are economically or socially, or what their needs are based on where they are on the spectrum, they should all have equal access to those opportunities and resources.
Nobody should fall through the cracks because of the patchwork approach we currently have across Canada right now. This bill seeks to expand the scope of support to ensure consistency and long-term solutions, especially for autistic people over the age of 18, which, of course, I believe is the biggest challenge for us.
This framework should provide for best practices, research, education, awareness, treatment, equal access to medical and financial supports and assistance with employment and housing challenges.
Colleagues, it is of vital importance that I note that this legislation is not the framework, and it’s important that everyone understands that. While it does outline some specific areas of inclusion, it was intentionally drafted not to be prescriptive in order to allow the government the flexibility to put forward the best framework possible.
The goal here was to give the government the best chance of success rather than forcing it into doing something just for the sake of appearing to have done something. We want the government and various stakeholders to succeed. So this is a giant first step forward. This is a call on the government to bring the stakeholders and provincial government officials around the table to do what so badly needs to be done. Thank you, colleagues.
The Deputy Chair: Thank you, senator. I now ask Senator Munson to make his remarks. Welcome, Senator Munson.
Hon. Jim Munson, former senator, as an individual: It’s wonderful to be here with so many familiar and friendly faces. I can see smiling faces, and that’s nice to see.
This is a very serious subject matter. It still stays close to my heart, and I do want to congratulate Senator Housakos and Senator Boehm, and I know that Senator Loffreda did speak to this particular piece of legislation.
I’ve been thinking today about the power of legislation. Yes, 15 years ago we did have the Senate report Pay Now or Pay Later: Autism Families in Crisis, and at that particular time I met a gentleman on the Hill in front of the Centennial Flame. He had a billboard in front of him that said, “Help me. Help my son.” We went to my office and we cried, and we talked about his son, who is now an adult today.
Being a novice in the Senate in those days, I didn’t know what to do. Somebody said, “Make a statement.” Then what do you do? Somebody said, “Launch an inquiry.” Then somebody said, “Well, why don’t you go further?” What else should I do? I’m speaking in the four walls of the Senate. So then I did convince the Social Affairs Committee, with Art Eggleton and Dr. Wilbert Keon, to start this report, Pay Now or Pay Later: Autism Families in Crisis. What I like seeing today is that this federal framework legislation echoes what was in that report when we are talking about increasing tax benefits, more money for caregivers and helping people to help those in the autism community.
It also calls for a national research operation. There’s such a similarity to this, but it is the power of legislation, as opposed to the power of persuasion through a report. Governments have implemented many things toward a national autism strategy, but, of course, it is not enough. When this becomes law — and I really hope it becomes law this year — the Senate will be in a good place. Why? Because you’re all speaking with one voice. Why? Because you care so much about this issue. At the end of the day, we are in a good place with advocates and experts and everybody is on board trying, I think, to get toward a national autism strategy.
In the federal framework I see, with Senator Housakos, the health minister has to report back to Parliament within 18 months of this becoming law. And what the power of legislation can do is that it will compel a government to act. Right now, there’s the Canadian Academy of Health Sciences, an independent group that has been studying and assessing what to do about a national autism strategy. I understand their report is coming out sometime next month. That too will add another tool toward a federal framework.
I’ll leave it at that. I’m open to any questions on this particular issue. Just because you leave the Senate doesn’t mean an issue leaves you, does it? I want to congratulate you all for standing up for those who need your one voice. Thank you.
The Deputy Chair: Thank you very much.
We’ll now proceed to questions from senators. I will again ask you to please keep to time and topic. To save time, let’s try to avoid asking a question that’s already been asked and answered. Witnesses, as you know, we don’t really need to repeat information because we all get it in transcripts within a very short time after the meeting. We have three panels today, so we’re tight.
Senator Poirier: Thank you to both senators for being here.
My first question is for Senator Housakos, as sponsor of the bill. Back in 2018, Parliament passed the Federal Framework on Post-Traumatic Stress Disorder Act. A little over a year ago, the federal framework was delivered, in October of 2019.
If Parliament is to pass Bill S-203 in a timely fashion, is it conceivable for a federal framework on autism spectrum disorder to be ready in a similar time frame?
I’ll ask the second part of my question at the same time. Have you had the chance to discuss with the minister or her officials about the government’s willingness to grant swift passage of Bill S-203 in the House of Commons?
Senator Housakos: That’s a very good question, senator. Of course, the bill has a timeline, like most of our bills. The timeline happens to be flexible, as the bill, as I mentioned, was put together to be non-prescriptive to begin with. The objective here, in the very spirit of a non-partisan basis, is to have one voice come out of the Senate on this particular bill. I hope there will be one voice when it gets to the House of Commons and is passed.
I think there will be goodwill. Senator Boehm has been instrumental. Although I’m the sponsor of the bill, he’s been working with me step by step. I consider him the co-sponsor on this bill. He and I have approached all sides in the House of Commons — the government side, opposition parties, critics of all political stripes — sensitizing them that we cannot allow politics to take over this particular piece of legislation, as has unfortunately happened in the past.
As I said, the bill is flexible. It’s prescriptive. There is a timeline as to when the government is supposed to deliver on these deliverables. It’s a reasonable timeline. There’s more of a willingness in 2022 than there has been in the past.
Senator Poirier: Senator Housakos, were any lessons learned from passing the Federal Framework on PTSD in October 2019 that were implemented in Bill S-203?
Senator Housakos: The lesson we learned is that too many chefs in the kitchen sometimes burns the attempt of creating a good pie. There were too many stakeholders, with too many demands, pushing the legislation in too many directions. I believe that was one of the reasons why government officials at the time — and I don’t want to make excuses for it — probably put their guard up a little bit. Whenever legislators try to be too prescriptive and try to put too many elements into a framework like this, it makes it difficult to get it through the legislative process. That’s an important lesson we learned from that particular failure, if we can call it that.
Senator Poirier: This question is for Senator Munson. It’s great to see you, and thanks for being with us again. I know you’ve devoted many years to autism. We surely miss all the debates we’ve heard from you during your years in the Senate.
Could you please describe what the impact of Bill S-203 would be for the families and Canadians who live with autism?
And in your experience and knowledge, how would Bill S-203 work in conjunction with the national autism strategy that is being developed?
Mr. Munson: Thank you, senator, for the question. This framework will be extremely helpful because it will have guidelines in it. If you read the bill carefully, as I spoke about before, there are four or five things that stood out for me.
One is that, of course, today people are able to get tax benefits or put money into tax shelters to help out those within their families who have autism. This would increase the way those tax benefits can work, because it has to come through the family as well.
Sitting here, for the last many years we have seen provincial governments doing their own thing and we have seen people moving across the country to get better autism services. As the bill calls for, a national autism strategy would compel the federal government to work closely with the provinces, in a legal fashion, on the distribution of money and making money accountable to help those who have autism or any other intellectual disability.
I see a collaborative approach here. Since it will be a piece of law, provincial governments will have to pay attention to what the government is wanting to do and say, but it’s also a very collaborative approach. A national strategy is just that: a national strategy.
Senator Patterson: I’m delighted that Senator Munson is able to enrich our discussion here today.
I’d like to signal my enthusiastic support of the bill and hope that it will be dealt with expeditiously in this session of the Senate, which seems to be dealing well with good private members’ bills like this.
I’d like to ask you both this question. We know that the Minister of Health is being asked to develop a framework under this bill, but the Government of Canada is also currently undertaking consultations for the development of a national autism strategy. Maybe this is an ignorant question, but I wouldn’t want the strategy to detract from what I think is probably more important, namely, the development of a framework.
Can you tell us, please, how a federal framework on autism spectrum disorder would differ from a national autism strategy?
Senator Housakos: Actually, the timing was not without a plan. Senator Boehm and I knew that the government is working on an autism strategy. An autism framework will serve as a fantastic springboard into that strategy because you will have a much broader range of discussion and consultation with stakeholders who will be around the table making their asks when you’re negotiating and building the framework. This will roll perfectly into having the government develop that autism strategy.
As we know from our experience here, Senator Patterson, often ministries and bureaucracies in Ottawa develop national strategies; and by the time they become legislation, they are passed on to cabinet and the government, and take flight in the legislative process, we discover along the way, as public figures and parliamentarians, that there were omissions. We’ve seen that in many instances.
I think the framework will serve the national strategy well in ensuring there are no holes left when they build that strategy and put it into a ministerial and logistic framework in terms of providing the strategy.
Senator Patterson: That’s good.
Could I ask Senator Munson if he has comments on that as well, please?
Mr. Munson: Thank you, senator. It’s compatible. It works together. It’s collaborative. I echo what Senator Housakos said. I’ll leave it at that.
Senator Patterson: Thank you.
Senator Kutcher: Senator Munson, it’s lovely to see you again. It’s great that we’re moving forward on pushing Canada to deal more expeditiously with the issue of autism. Having worked in this field for many years, it’s long overdue.
My question is a bit more nuanced but picks up from what Senator Poirier and Senator Patterson asked.
The Canadian Academy of Health Sciences is coming to the release of its report, which will be released probably in another month. They have had thousands upon thousands of interviews with people because they are creating the national autism strategy.
What kinds of discussions have you had with people in the academy or in government to ensure that the framework will not be working at cross-purposes with the strategy? I hear the hope that they will be integrated, but I’d like to have some assurances that they won’t be working at cross-purposes.
Mr. Munson: I know that CASDA, the Canadian Autism Spectrum Disorder Alliance, has been strong in terms of their writing of a blueprint and dealing with a national autism strategy. They have probably had discussions with the science council through their report. I don’t see any downside to this, senator. Yes, there will probably be some who may not like this framework, but I think that unless you have a law in place, then it’s so difficult to get things done.
That’s why, in the last little while, all parties pledged that there should be a national autism strategy, and there’s no reason it can’t work within this federal framework. When we see that report — and I haven’t talked to anybody in the Canadian Academy of Health Sciences, but I know the quality of the work they have done and I know the quality of the people who are there and what they are thinking. So I see nothing but collaboration, cooperation and making all of this work.
Thank you.
Senator Housakos: I want to add to that. I think the two are very compatible, but what can happen is that, without this piece of legislation — which we’ve never had before — which compels the government, by law — by the word of Parliament — to really move forward with a framework that has meat to it, which transforms itself into a strategy, and a strategy, as I’ve seen very often, can be faulty; I’ve seen many government strategies in this town be developed in the absence of the broadest possible range of consultations. At the end of the day, most government strategies determine who they consult, when they consult and how they consult.
This framework is calling upon the government and that strategic process to be as broad as possible and to leave nobody behind. When you have a call to bring every stakeholder and every government agency involved around the table to develop a framework, I think that framework will be very wholesome because of the debate.
So I think this will strengthen the attempt to have a solid national strategy. Without this, we have a risk of a national strategy, as I’ve seen many times, coming back to Parliament for review with holes in it. So I believe this will really strengthen one, and there will be no competition or disagreement between them. They are not combative; they are complementary.
Senator Kutcher: I hear you, and I understand what you’re saying as well, Jim, and I hope you’re right. My question is this: Have you had discussions with people to see if there’s any interdigitation?
Senator Housakos: When Senator Boehm and I put this bill together, we focused on what we learned from the report Pay Now or Pay Later. We focused on the knowledge we had from stakeholders. Again, we did not have a round-table discussion or a broad consultation with stakeholders, and that was done expressly because this is not a framework. Every stakeholder you have a discussion with will look at this and say, “This is great. We need it. We want it. But we want this and we need that,” and I say, “Absolutely.”
So once the government sets the discussion and the apparatus to put the meat on the framework, let’s go ahead.
What has happened in the past — and to Senator Poirier’s question earlier — the reason we failed a few years ago to get this done — and we’ve taken steps backward — is because we tried to build the framework at the legislative stage. This is not the place to do it. This is the place to launch it and tell the government, “Look. We need to get this done. These are the very broad flexible parameters. Please do it.”
The Deputy Chair: Senator, we must move forward. I’ve been told this panel has to end at 4:30, so we have about five minutes left. We’re not going to get through everybody on the list, so I’m going to say to Senator Petitclerc and those who are on the speaking list that you’ll be the first to ask questions to the next set of witnesses so that our conversation can carry on.
[Translation]
Senator Petitclerc: Thank you, Senator Housakos. Thank you, too, Senator Munson. It’s a real pleasure to see you.
My question sort of overlaps with Senator Kutcher’s. In fact, I wanted more detail on the process. The framework of the bill provides for certain measures, and we see that six measures are listed. That sounds very good, but I’d like to know how you came up with these six measures. Why not add more, or have fewer?
In terms of the discussions, we know that autism spectrum stakeholders form a very diverse coalition. That’s why I wanted to know how you got there.
Senator Housakos: First, we have tried to note the topics that are general and that give us the possibility of eventually adding details in each section. We drew on the Senate report, Pay Now or Pay Later: Autism Families in Crisis, as well as other organizations that appeared before the committee.
The goal is to remain flexible and to have the possibility of adding details to each section of the bill. For example, while the government and stakeholders are developing the legislative framework, there is no reason why other topics or aspects cannot be added to the bill.
[English]
Mr. Munson: I would add just one thing to that, which is important in regard to the ingenuity of this bill: Pass it in the Senate, get it done and get it to the House of Commons, because this bill is wide open. In the House of Commons, in front of their committees on this, they can sit back and add to what Senator Petitclerc has just talked about in terms of the voting, self-advocates, different groups and so on, and add on.
To me, I don’t see the measure to be provided — the consultations — as a strict piece of the framework. There is much more to be there, and let’s have the House of Commons participate and make this work.
The Deputy Chair: I want to thank you all. I’m sorry we’re under such time constraints; it was the job I was given for the afternoon. Senator Housakos and Senator Munson, thank you both very much. I know people can call you for answers at any point and you’ll be happy to answer them.
Mr. Munson: Thank you for being so kind.
The Deputy Chair: Colleagues, we will suspend for a minute or two as we admit our next witnesses and we will carry on.
Thank you, colleagues, and I’d like to welcome our next guests. I remind us all that our time is tight.
[Translation]
From the Canadian Autism Spectrum Disorders Alliance, we have Jonathan Lai, Executive Director, and Deepa Singal, Director of Scientific and Data Initiatives. From Autism Canada, we have Dermot Cleary, Board Chair, and Paul Finch, Director.
[English]
I am going to ask if we can start with Mr. Lai to make his presentation first, to be followed by Mr. Cleary. Welcome, and we look forward to your remarks. We are asking everyone to keep time tight, topics tight and try not to have repetitive questions as our time is tight.
Jonathan Lai, Executive Director, Canadian Autism Spectrum Disorder Alliance: Good afternoon, senators. My name is Jonathan Lai, and I’m the executive director of CASDA. I’m joined by my colleague, Deepa Singal, CASDA’s Director of Scientific and Data Initiatives. We’re honoured to speak to you today on behalf of over 400 organizations and individuals across Canada that make up the Canadian Autism Spectrum Disorder Alliance.
Through the years, the Senate has been an incredible ally to autistic people living in Canada and their loved ones, helping to raise awareness of what families face and championing acceptance of autistic people. As Senator Housakos and Senator Munson have noted well, we would be remiss not to acknowledge the 14 years that have passed since the Pay Now or Pay Later: Autism Families in Crisis report that was brought forward by the Senate in 2007. Fourteen years ago, leading advocates from autism organizations across the country, many now members of CASDA, stood in front of the Senate as part of the consultations for Pay Now or Pay Later. They all agreed that this country needed a framework to advance a national autism strategy that would bring about coordination, transparency and much-needed levels of systematic organization to oversee the deployment of resources.
We know, of course, that neither the government of that day nor any in the 14 years since have heeded the Senate’s call to action. We also know, sadly, that autistic Canadians and their families are indeed paying for it today.
Deepa Singal, Director of Scientific and Data Initiatives, Canadian Autism Spectrum Disorder Alliance: A lot can happen in 14 years. Canadians have made tremendous advances in health and social policy. However, devastatingly, our community — autistic people, their families and those who care for and support them — know that a lot also did not happen. A child who was diagnosed at the age of four 14 years ago is now 18 years old. This child and their family would have had to navigate a patchwork of services across our health, education and social systems. They would have endured unacceptable wait times of up to two years to receive access to diagnosis and services that would have made a profound difference in that child’s developmental trajectory. In many instances, these services could cost upwards of $150,000 a year in out-of-pocket costs. This is simply out of reach for most Canadian families. This unacceptable reality leaves families helpless and hopeless.
Fourteen years ago, in 2007, 15-year-old Jennifer received a late diagnosis. Jennifer would now be 29 years old. If Jennifer had resided in one of the few provinces that had a provincial autism program, she would have been eligible for support for only three years before her services stopped when she turned 18. Let us be abundantly clear: Unlike many government services, disabilities do not magically end at the age of 18. Autistic children grow up to be autistic adults. This lack of support over a lifespan reflects that our current policies are not evidence based. As a result of the lack of diagnostic and support services in the last 14 years, Jennifer would not have had access to employment transition programs, mental health supports, and housing assistance. She may become part of the sobering statistics that tell us that over 80% of autistic adults are underemployed, and over 55% will be diagnosed with a co-occurring mental health condition in adulthood. It is nothing less than a tragedy that the very same challenges and hurdles faced by the autism community 14 years ago remain in 2022.
Mr. Lai: There is hope, though. We’re encouraged by the progress that has been made over the past several years in laying the groundwork for the development of a national autism strategy. There’s currently a secretariat in the Public Health Agency of Canada leading to the development of a strategy, and there is a report from the Canadian Academy of Health Sciences building a foundation for the national autism strategy.
Our fear is that history will repeat itself, that our collective hopes will be inflated only to come crashing down due to shifting priorities or a changing government. Thankfully, this bill helps directly address this concern. This bill puts in place not only the mechanism for federal leadership and oversight but, perhaps most importantly, distinct measures of accountability required — a form of oversight that only a Senate body can provide.
In closing, next week will mark World Autism Awareness Day on April 2. It’s the fourteenth World Autism Awareness Day that has passed since the introduction of the Pay Now or Pay Later report. If we were to ask for one thing this World Autism Awareness Day, it would be that, for the last time, autistic Canadians, their families, caregivers and support teams are asked to acknowledge a day celebrating their existence without tangible and meaningful action.
The Chair: Thank you very much for your interventions.
Dermot Cleary, Autism Canada, Board Chair: Good afternoon and thank you, senators, and to all those present for the opportunity to present. My name is Dermot Cleary, and I’m the chair of the board of Autism Canada, a society representing autistic people in Canada that has been working on behalf of autism awareness for over 45 years.
I would like to begin by thanking the Senate, and in particular the Honourable Senator Housakos, for generating this bill. We are broadly supportive of providing a much-needed framework for autism supports across the country and an ability to coordinate efforts between jurisdictions that is currently sorely lacking.
We would like to begin by stating that, upon review and careful consideration, we welcome this framework, as it aspires to promote equal access to financial and other supports critical for those with autism spectrum disorder. We’d like to reference the Honourable Senator Boehm and his speech in support of the bill last November. Not only does Senator Boehm’s speech address the need for a national leadership framework, but it also emphasizes the most urgent issues for those with autism spectrum disorder. Employment, housing and equitable access to supports for all Canadians are among those most urgent issues. Autism Canada would like to highlight three major concerns with Bill S-203 in its present form. To introduce them, I will defer to my colleague, Autism Canada board director Paul Finch.
Paul Finch, Director, Autism Canada: Honourable senators, my name is Paul Finch, coming to you today from Burnaby, British Columbia, in my office on the traditional unceded territory of the Musqueam, Squamish and Tsleil-Waututh peoples. I would like to thank you for the opportunity and thank my colleagues. I’m a director at Autism Canada, and I’m actually formally diagnosed on the autism spectrum. While my experience does not encapsulate that of many others on the spectrum, I believe it’s important that autistic voices are included in this process, and I thank the Senate for that.
We’ve identified three key issues we want to address, and part of that is because we believe there’s going to be robust and fulsome discussion and debate. The first one is the need for the concrete tie-in to federal financial incentives in any autism framework. That’s critical to its success, and the establishment of a framework will face strong headwinds from provinces that not only control supports right now but are also moving in a more divergent direction, as we see in my home province of British Columbia. We anticipate that there is a lot of work flowing out requiring tie-ins to federal tax structures, and that’s going to be critical to make the government action on the framework successful.
The second issue we want to draw your attention to is the wording under section 3 on consultations. It starts by identifying the first communities for consultations as the medical research and advocacy communities. While this may seem like a trivial issue of wording, we’ve noticed that these groups have been given preference, which draws attention to the larger struggle of those on the autism spectrum, as well as their families and caregivers, both as individuals and as advocacy organizations, such as our own, and, of course, our colleagues here today. We believe it’s especially important for those on the autism spectrum to have a seat at the table.
These individuals are the primary stakeholders in this bill, and they stand to gain or lose depending on its outcome. Therefore, we want to insist these constituencies, starting with those who are on the autism spectrum, like myself and those unlike myself, are given formal priority. For too long, those of us living with autism — and those who are close family and caregivers of those living with autism — have not had the priority or standing they should. We feel it’s an important thing to rectify for this process.
The third issue we want to emphasize is the housing challenges we’re seeing now for all those on the autism spectrum and their families. For those receiving care or support and those living independently, the skyrocketing costs of housing that are being exacerbated by inflation are creating extreme barriers that impact quality of life in all aspects of people’s lives. In its current form, the bill recognizes financial support for autistic persons, and of course, we want to emphasize the need for the strategy to provide safe and stable housing as well as financial supports.
Thank you very much. Of course, we’re pleased to answer any questions.
The Deputy Chair: Thank you, Mr. Finch and Mr. Cleary. I thank both our first speakers as well. I’m going to turn to the senators for questions.
Senator Loffreda: When I spoke to Bill S-203 at second reading last December, I shared the story of PizzAut, an Italian pizzeria run by young adults with autism. What they’re doing is inspiring, and I’m interested in the PizzAut model, because it gives individuals with autism a sense of purpose, dignity and belonging. It’s important to give autistic individuals the opportunity to feel like they’re contributing to society in a meaningful way.
Senator Housakos mentioned that the largest challenge in the autistic community is when people reach 18 years of age.
Do you think a similar model could be implemented in Canada? What might be some of the barriers or challenges in establishing such a business? Do you think there’s appetite for something like PizzAut, and are you familiar with any other similar programs or initiatives that might achieve that same goal of helping individuals on the spectrum secure employment? We like to be leaders in Canada, so is there anything we can do to incentivize, promote or encourage investment to help the autistic community and autistic individuals when they do reach the age of employment?
Mr. Lai: Thank you for the question.
In Canada, we do have models of pre-employment and employment supports that are being built for autistic adults. We know there is a huge need for this across our country. At CASDA, we partnered with Inclusion Canada to run a program called Ready, Willing and Able across 20 communities, and we hope to expand to 10 more. That is a program of employment supports for individuals on the autism spectrum.
We also know that the Public Health Agency of Canada, as they move a national autism strategy forward, has identified three themes: social inclusion, economic inclusion and evidence-based interventions. Under economic inclusion, they have done a lot of work with the working groups regarding the advancement of employment and making sure the underemployment issues we see for autistic Canadians are being addressed.
Senator Loffreda: Any other insights from other members of our panel would be welcome at this point.
Mr. Finch: It’s an excellent question. Despite the programs that do exist, we’ve seen an incredible gap, one that is almost unbridgeable.
I want to tell an anecdote from my personal experience. When I first moved out, it was incredibly difficult for me to obtain employment. I remember getting rejected from a series of fast-food restaurants that I’d applied to just to make ends meet and sustain myself. However, people experience the struggle differently depending on where they live, and it’s compounded by factors in remote and rural Canada. I want to emphasize that these supports are simply not in place there, and we’re only seeing the barest supports in some of the more urban centres.
One of the critical parts of a national strategy is going to be bridging the urban-rural divide and addressing some of the different sets of supports needed. I’ll be frank. There’s a specific section of the autism community, of those of us on the spectrum, that are able to enter into gainful and meaningful employment on a certain level, and our needs are different than another section of the community. Both of those sets of needs must be taken into full consideration when it comes to employment and what that means. There’s a tremendous stigma to be removed from autism, which has to do purely with how we relate.
Senator Loffreda: Thank you for that. Quickly, you did speak of concerns, but what is your opinion on these six measures in Bill S-203? Obviously, I’m particularly interested in your views on employment for autistic adults, which you did cover, so thank you for that.
The Deputy Chair: Witnesses, our time is up on this. I suggest that for Senator Loffreda’s valid question, you can send other thoughts to the clerk. Those written responses will be sent to everybody. This is one way that we can combat the fact that we’re tightly constrained by time. I thank you for your answers to Senator Loffreda.
Senator Moodie: Thank you to the witnesses for joining us for this discussion.
I’d like to hear your perspectives, Mr. Lai and Ms. Singal, on the following question. One of the biggest challenges anyone confronted with this potential diagnosis faces is access to diagnosis and the very real shortage of qualified professionals who can make a diagnosis in a timely fashion. The often desperately needed respite for caregivers, the assurance of appropriate housing and accountability for federal financing are all part of the real-world concerns families that have a diagnosis of autism face. I spent many years as a pediatrician, dealing with this diagnosis and trying to find the right supports and access to services for patients. How is this framework going to help that? Can you help me understand that?
Ms. Singal: We wholeheartedly agree. We see these complexities every day with the families and self-advocating individuals we work with. This framework is the first step to dig into the new nuances you speak about. There’s an opportunity to make significant gains in all of the areas you mentioned with a tailored and targeted response that takes into account the diversity of the needs and diversity of the spectrum.
There is a globally recognized need for a national autism strategy. Canada is noticeably lagging behind other comparable countries in the development of the strategy. Multiple countries have a strategy, including the United States, Malta, England, Scotland, Spain and Denmark, that addresses the nuances and complexities that you bring up today. A lot of those countries are starting to see substantial impacts and substantial gains in employment, access to diagnosis, and access to and development of more tailored approaches, as well as more equitable access across their jurisdictions for services.
Therefore, this framework is that first step in creating these targeted policy responses that then can help our experts, our self-advocates and our community reach these solutions and answers.
Senator Moodie: My follow-up question is very quick.
There is already a lot of discussion that is ongoing right now around the national autism strategy. Can you help us understand where you see the differences? Placing a framework into the mix — will that slow down the work you already see happening, or do you think it will help motivate movement in the right direction? Give me a sense of that, please.
Ms. Singal: Sure. Thank you for that.
We absolutely see this framework advancing the work. This bill puts together the right people; it puts together representatives from provincial governments; the medical, research and advocacy community; and most importantly, as other panellists said, persons with lived experience and self-advocates and their caregivers. It gives us and the government a feasible timeline.
There are accountability measures. Those have been consistently missing in the last few decades where this endeavour has been tried to be achieved.
The Deputy Chair: Mr. Finch or Mr. Cleary, do you have a response to Senator Moodie’s question?
Mr. Finch: Thank you.
Our colleague has encapsulated the issue quite well. The one thing we will add is that this is an issue of tremendous importance not just for those of us on the spectrum but also for entire families. I know of several anecdotal situations — and I know this is a broader trend — where the lack of interoperability in autism programs and supports and services between provinces is a negative effect on our economy to the extent where, in other jurisdictions, we see that there’s interoperability and there isn’t here.
Our one concern around developing interoperability is that it’s not done in a way that disenfranchises those on the spectrum and those with different needs. We don’t want to create a monolithic model. I want to emphasize that.
Senator Bernard: I want to thank all the witnesses for appearing before us today.
I have several questions, and I know I won’t get to them all. I’ll start with my first question to Mr. Lai.
Language can be dehumanizing and disempowering. It can also be exclusionary. Does CASDA have any suggestions for the ways in which some of the language used in this bill might be changed to be more empowering? I’m thinking, for example, of words like “impairment” and “disorder.”
Do you have suggestions?
Mr. Lai: Thank you, Senator Bernard. It’s a great question, and we have some suggestions. In our submission, we suggested some amendments and the rationale for them.
Before I get to those, I want to emphasize that the strength of this bill is about the time and the process to bring together the right people and to give a feasible timeline and that reporting structure.
In light of this, our amendments are there to make this great bill a better one and to reflect those nuances that shape society and culture, based on our in-depth knowledge of the current community needs.
For instance, for one of the clauses, one of our suggested amendments would be to replace the word “awareness” with “acceptance” regarding a national public campaign. We’re not looking for awareness about a disorder but about acceptance for people, to have more a human-rights-based lens on that and to prioritize the social and economic inclusion of autistic Canadians and their families.
The community, I would say, is very wary of one-time media campaigns that would have little measurable impact in this day and age. We have to move away from that awareness culture around an impairment to an acceptance of people and to actions that would lead to a more inclusive society with the supports available so that everybody can participate more fully. That’s one of the suggestions.
We do have a few others. I don’t know if you would like me to go into those in detail. I can send those in as submissions later on. I know time is pressing.
The Deputy Chair: It would be helpful if you can send those suggestions to the clerk, and I assure you that they will get to all committee members and will be considered as this committee puts their report together for the Senate for third reading.
Senator Bernard: Thank you. I’ll put my next question to Mr. Finch.
I want to really thank you for speaking about the importance of inclusion. In the first panel, we heard the sponsor say that stakeholders were not consulted for the drafting of this bill, and we heard you very clearly note the importance of first-voice inclusion throughout the process.
I wonder if you can speak a bit more about that. Also, what are your thoughts with regard to long-term oversight and leadership, and involvement and inclusion, of first voices there, as well? Thank you.
Mr. Finch: Thank you, senator; it’s a great question.
I’m going to speak very frankly to this topic, because it’s one that needs frank discussion. There’s a raging debate inside the autism advocacy community between different perspectives. This ties into your first question addressed to CASDA, which is around how language includes people, basically. The reality is that, in our view, the framework should be the mechanism through which language that is inclusive is developed. That’s only going to happen if the right voices are at the table.
We don’t expect a process where all the voices at the table are going to agree. We’ve seen that throughout the community, and I’ll be very frank about that. However, we do know that, historically, the voices of autistic people haven’t had the standing they need to in order to see that it carries forward. Therefore what’s absolutely critical for success here is that people who are on the spectrum — not just like me but some folks who have very different experiences than I do, I want to emphasize — are included and have a stakeholder role in that.
This is one of the situations where we tremendously value the development of the research and advocacy that has come out. However, in too many cases, research and advocacy have taken a front seat rather than playing a supportive role to those on the spectrum, and their families and caregivers. To be very frank, we need to reverse that situation, and we need to make sure that those on the spectrum are included at every step of this. That’s going to be critical. Like I said, we’re more than happy — like CASDA — to submit our suggestions for more inclusive language and framing.
I want to caution, though, that this is an ongoing debate and dialogue right now, and it’s changing almost on a monthly basis, as anyone in the space can tell you. What will actually be critical is using this as a vehicle to help arrive at some consensus in terms of the appropriate empowering language to interface the support.
What will be required here is making sure there is a minimum — and I’ll be very blunt about it — quota of people on the spectrum who are a part of the establishment of this framework.
The Deputy Chair: Thank you very much, Mr. Finch. With you ending on the word “framework,” I think that has given the context to ensure that the consultations are fulsome.
Senator Lankin: My question is to Mr. Finch.
You said earlier that one of the things that is very important is ensuring equal access, but you and Senator Housakos both talked about the idea that this shouldn’t be monolithic and one size fits all. Are we talking about equitable access? Are we talking about the differing needs of people with lived experience and with living on different parts of the spectrum? Could you clarify that for us, please?
Mr. Finch: Absolutely. Thank you, senator. I’m not just talking about that, but also that we need to first consider that the spectrum is broad and diverse. The supports that I need, needed or did not receive and those that others need, needed or did not receive can be tremendously different. I never want to conflate my own experience with the experience of somebody who is perhaps totally non-verbal. We have different challenges. We are very similar in some ways, but we have different challenges. I’m careful to make that distinction.
I also want to say that, in our country, we can see through diagnostic rates across the country that there are tremendous swaths of our population — and I want to draw attention to Indigenous populations in this country — who do not have access to even the diagnostic supports to enter into a system where they can begin to even be provided some of those supports. That’s structural. It’s structural inequality, it’s structural racism across the system, and a lot of it is based on an urban/rural divide in our country. This is something that we haven’t seen the provinces able to tackle, and I don’t think they’re going to be able to tackle it without some clear direction coming out of a framework from the federal government.
I want to be clear, it’s not simply the difference between those of us on the spectrum and our different experiences. There’s a vast gulf of differences in our experiences on the spectrum and the supports that we need. It’s also based on where we live and where we come from. That’s equally as important in that consideration.
Senator Lankin: Thank you, that’s the need for a national framework and/or a national strategy. I’ve heard people talk about the difference between a strategy and a framework. I think that’s being overplayed a little bit. I support this bill because it puts in deadlines, time frames and accountability reporting, and we’re able to judge that. It’s been far too long that we have heard promises from various governments at provincial, federal and territorial levels that haven’t come to fruition. I acknowledge that I think this is duplicative of what the government is doing and what is in the mandate letters for ministers, but I’m supporting it because of those accountability measures.
What I wonder, though, is the report coming from the Canadian Academy of Health Sciences — we’ll see what comes out of it. I think it may be a very important document. I’m hopeful for that. I’ve heard the recommendations for some amendments to improve this bill. I wonder whether, without any intent to delay, we should be waiting for that report, examining it against the list of amendments that we’re considering and whether some other amendments might be added — not to take it to a more specified list. I think Senator Housakos is right in saying the non-specificity and non-prescriptive nature is important.
Do you have any comments on that? We may well be able to accomplish having this pass through the Senate before the end of the sitting in June. Do you think we should do all of our work and our study but not finalize our amendments until we see that report?
Mr. Finch: At risk of just answering quickly, I don’t feel the provision of that report is necessary or fundamental to the work being done to establish this framework. I feel that it can be adequately brought into the framework after the legislation has been passed.
Senator Lankin: Okay, thank you very much.
Ms. Singal: No, we should not wait. The intention of that report is to help the nuanced aspect of writing strategy, putting the pen to paper that the Public Health Agency of Canada will do. What we know that this bill will accomplish is the accountability timeline so that this stays as a priority for the Minister of Health and for Canadians.
The Deputy Chair: Thank you.
Senator Dasko: Thank you, witnesses. I want to drill down on the issue of the national public awareness campaign, which was brought up earlier by Mr. Lai. One of the provisions of this bill includes a national public awareness campaign to enhance knowledge and understanding about autism spectrum disorder.
Mr. Lai, if I could follow up on your earlier comments and also ask Mr. Cleary about this issue, are you saying that you don’t think there should be a national campaign, and/or should there not be an awareness campaign? I want to understand what it is that you are looking for when it comes to public awareness.
I would also like to ask both of you if either of your organizations have ever embarked on an awareness campaign among the public, whether it be national, local, provincial or whatever, to inform and raise awareness, knowledge, et cetera, among Canadians about autism spectrum disorder? Maybe if we get to that point, you could kind of tell me what the elements are. What are you looking for with respect to this in this framework? Thank you.
Mr. Lai: Thank you for the question, senator. I think a campaign, if we call it a sort of development of strategic communications by the government, that itself is a tool, and that can be used for good. Really the emphasis is shifting from awareness to acceptance; understanding people. I think about what Senator Bernard brought up earlier about language being important. It shapes the way we think, it shapes the way we approach people and how we approach problems. Moving from that awareness language to acceptance language is what we’re advocating for.
For the second part of your question, our member organizations have embarked on different campaigns of that sort in order to educate, demonstrate and showcase the strengths and the positive side of autism that many do not see, but at the same time realizing that there are, as the WHO put it in their International Classification of Functioning, Disability and Health, there are limitations. Realizing how the limitations of how a person and their environment interact allows for participation in society as full as we can. I think we’re at that nexus of understanding that there’s an acceptance of people, understanding that there’s an interface between an individual and their environment. That is where we need to work and not to have ableist notions of how we approach problems or issues of participation in society.
Mr. Cleary: Thank you.
We do some awareness work at Autism Canada, but really what we’re seeking is acceptance based on a broader education and understanding of autism. I would say that it sort of comes out of the campaign realm and it moves more into the educational realm. Where awareness becomes important is in building public support for allocating resources to address the limitations that currently exist. That’s where we would like to see the energy put in, as opposed to just pure awareness. Even as important as acceptance is, we think that there’s an education piece that’s really key to all of this being successful.
Senator Dasko: [Technical difficulties] — for a national campaign. I’m just wondering if that language is not really the language that you would be looking for.
Mr. Cleary: I wouldn’t disagree with your comment, senator.
Senator Dasko: And Mr. Lai, is that how you would see it? You wouldn’t use this particular language to describe this aspect — yes or no?
Mr. Lai: I think the language of “campaign” could be misconstrued when this is brought forward in the policy process. If there’s better language to use, it would be helpful.
Senator Dasko: Thank you.
Senator Poirier: Thank you. My question has been answered in part, so I’ll make it very quick and short and open to anyone who wants to answer.
In your experience, could you describe the impact of Bill S-203 for the families and the Canadians who live with autism and for your organization?
Mr. Finch: The establishment of a national framework will provide hope for many on the autism spectrum and families and caregivers and those working in this field. That’s a double-edged sword on this because that hope can either be fulfilled with concrete action, or it can provide deep disappointment if the expectations that are raised by this legislation are not fulfilled.
There are two possible avenues that we can walk down.
This is incredibly important legislation. It will set a standard and an expectation. It’s going to be the job of the government to make sure that expectation is fulfilled.
What’s important is setting that expectation on a federal level across all the provinces is the key part of this legislation. It’s the big thing we’re seeing that’s missing.
Senator Poirier: Thank you.
Senator Patterson: I would like to thank both these national organizations and indicate my support for getting the bill dealt with expeditiously.
We don’t want to have anyone come to this committee and say that they were never consulted or the bill was developed without input from autistic people. Of your two national organizations, CASDA is the biggest; Autism Canada is the only Canadian autistic organization with a national perspective, I understand.
I’d like to ask you, beginning with CASDA, or in writing if we don’t have time, how did professionals and members of the autistic community feed into the policy stance taken by your organization? I would like to ask about your membership and governance structure; are members of the autistic community involved in policy positions?
How do you canvass your members, and how do you get that information fed into your policy positions and the advice you’re giving to this community?
The Deputy Chair: Thank you for the question, Senator Patterson, and guests. I’m terribly sorry, our time has wound down. The question is on the record. It’s a very good question. We would very much appreciate your written responses. If you would like the text of what Senator Patterson asked, I’m sure the clerks would be more than happy to send it to you.
With that, I fear this panel has come to its conclusion and the end of its time. I want to thank you so much. It’s been very enlightening, and we appreciate your contributions.
We are entering our third panel today for this bill. I welcome our witnesses: Dr. Evdokia Anagnostou, Canada Research Chair in Translational Therapeutics in Autism Spectrum Disorder; and from the Nishnawbe Aski Nation, we have Anna Betty Achneepineskum, Deputy Grand Chief; and we have Beedahbin Desmoulin and Wendy Arseneault; Ms. Desmoulin is Manager of Child Development at the Nishnawbe Aski Nation Autism Spectrum Disorder Action Group and Ms. Arseneault is Director of Child Development.
Beedahbin Desmoulin, Manager of Child Development, Nishnawbe Aski Nation Autism Spectrum Disorder Action Group: Good afternoon, honourable senators. My name is Beedahbin Desmoulin. I would like to take the time to first acknowledge the land in which myself and my organization are situated. We are located on the traditional territory of the Anishinaabe people of northwestern Ontario. We work and live on the ancestral lands of the Fort William First Nation, who are signatories to the Robinson-Superior Treaty of 1850.
Nishnawbe Aski Nation, or NAN, is honoured to be here and invited to these proceedings and to be given the opportunity to provide input into the work to establish a national autism framework as outlined in Bill S-203.
The Nishnawbe Aski Nation territory encompasses James Bay Treaty No. 9 and the Ontario portion of Treaty No. 5, a land mass covering two thirds of the province of Ontario, spanning 210 square miles. Our people traditionally speak Cree and Algonquin in the east, Oji-Cree in the west, and Ojibway in the central south area.
NAN also represents 49 First Nations with a total population, on and off reserve, of approximately 45,000 people, grouped by tribal council. Six of our member nations are not affiliated with a specific tribal council.
Nishnawbe Aski Nation acknowledges the honesty, courage and resiliency of the children, youth, families and elders of the Nishnawbe Aski Nation. They have shared their stories with us over the past several years on the challenges they face every day in supporting their loved ones living with autism, but also on the successes of taking their children on the land and engaging in land-based activities.
I’m here today to ensure that Nishnawbe Aski Nation families’ voices are heard, and that families will be engaged in meaningful dialogue in further developing a federal framework that will meet their needs and be respectful of their culture, languages, traditions and values.
Nishnawbe Aski Nation has worked with CASDA since 2015 and presented at their annual conferences to bring awareness and attention to the day-to-day realities and struggles autistic persons and their families face in our Nishnawbe Aski Nation communities.
Nishnawbe Aski Nation citizens are largely under-serviced by universal health care in Canada. This has become very evident during the COVID-19 pandemic and demonstrates how extremely vulnerable Nishnawbe Aski Nation communities are and the disparity of health services compared to the rest of Canada.
Access to occupational therapists, speech pathologists, behaviour interventionists, psychologists, pediatricians and other health professionals is limited or non-existent for some of our communities, and Bill S-203 provides an opportunity to begin to close these gaps.
We have heard from families who made the heartbreaking decisions to surrender their child into the child welfare system or who have made decisions to leave their communities and family support systems to relocate to an urban area so that they can access mainstream services.
However, they unfortunately soon realized that these services were not so readily available. They were placed on long wait lists and found it difficult and stressful to cope with the confusion of navigating complex systems.
As stated in the UN Declaration on the Rights of Indigenous Peoples in article 22:
Particular attention shall be paid to the rights and special needs of indigenous elders, women, youth, children and persons with disabilities in the implementation of this Declaration.
Therefore, there needs to be a coordinated approach and inclusive policy design that supports families accessing services where and when needed in their communities. Families do not understand what autism is and why their child is struggling. It has created immense stress in families and communities, and has resulted in families isolating themselves and their children from the community.
Elders have told us there is no word in their language for autism, and it has been recognized by families, schools, pediatricians and NAN leadership as a growing crisis. Most families in NAN struggle to meet basic standards of living, such as food, shelter and social safety, which all contribute to well-being.
Therefore, the Nishnawbe Aski Nation strongly supports the incorporation of supports for caregivers of autistic persons into the framework and the urgent need to provide family-centred care and family supports that are grounded in Anishinabe culture, language, traditions and practices that are available and accessible in communities. There need to be mechanisms and supports in place to develop the appropriate assessments, diagnoses and follow-up services that are grounded in our culture and language of the Nishnawbe Aski Nation. Mainstream services and service providers who do not understand or acknowledge the culture do not meet the needs of our children and families, and can cause further hardship and distrust of the systems.
As stated in the UN Declaration on the Rights of Indigenous Peoples in article 23:
Indigenous peoples have the right to determine and develop priorities and strategies for exercising their right to development. In particular, indigenous peoples have the right to be actively involved in developing and determining health, housing and other economic and social programmes affecting them and, as far as possible, to administer such programmes through their own institutions.
Prioritizing a federal framework that increases accessibility to culturally appropriate and safe services and equitable access to resources to develop community-led approaches and strategies will better support all of our families, children and youth living with autism, and will begin to address the disparities in health services.
In closing, I want to be able to share some of the quotes that we’ve heard from our elders, parents and physicians with whom we work.
One says:
There is a lack of culturally appropriate and normed assessment tools, and current tools contribute to making a place feel unsafe.
Another said:
The current funding models are short term in nature. This makes finding staff challenging and contributes to high turnover and a lack of consistency. A commitment to a five-year funding would be helpful in hiring staff and supporting sustainability.
Another said:
Often issues are not addressed until the child or youth and their family are in crisis. High turnover of staff contributes to children, youth and their families falling through the cracks until they are already in crisis.
What exists is not a system. Therefore there is no follow-up once a child or youth is diagnosed —
The Deputy Chair: I hate to intervene, but we are over time. The quotes are fantastic, and maybe you can bring them up as you are responding to questions.
Ms. Desmoulin: I will. Meegwetch.
The Deputy Chair: Dr. Anagnostou, I will turn the floor over to you and then we will move to questions. Thank you.
Dr. Evdokia Anagnostou, Canada Research Chair in Translational Therapeutics in Autism Spectrum Disorder, as an individual: I’m honoured to follow Ms. Desmoulin.
Good afternoon, everybody. I’m a physician, a child neurologist and a professor of pediatrics at the University of Toronto. I lead the Autism Research Centre at Holland Bloorview Kids Rehabilitation Hospital. It’s my honour to be here. I can contribute evidence from clinical and research perspectives to this discussion.
Between 1% and 2% of Canadians identify as autistic or on the autism spectrum, but the truth is that we don’t have exact numbers, as we lack a truly national epidemiological study that captures everybody in order to properly understand the numbers of individuals that need to be supported.
To my knowledge, we are the only country that has a publicly funded health care system that does not have accurate real-time data on how many people are on the autism spectrum. Without understanding that, we cannot monitor what services they get, how long they wait for services and how such services meet their needs.
To Ms. Desmoulin’s point, we also do not know who’s included in the systems we create and who’s excluded from the systems. We have limited ability to build quality-improvement systems that assure equity of access and quality of service.
Autism does not go away; it is part of how brains and bodies develop. It is part of the fabric of a person. As such, autistic people’s needs must be understood and met from toddlerhood to old age. Also, autism, as has been described, is most often accompanied by developmental, mental and physical health conditions that highly impact how autistic people engage with our current service sector and then how their needs get met across their lifespan.
If you allow me a couple of examples to make the point, up to two thirds of autistic youth will have significant sleep disorders, up to 80% of youth will experience clinically important anxiety, up to half of autistic children will also have attention deficit hyperactivity disorder, approximately a third of autistic individuals have an intellectual disability and up to a quarter of autistic adults have epilepsy.
Many autistic individuals thrive. Others struggle across their lifespan with mental and physical health concerns, and others never acquire the necessary skills to live without very intensive supports.
That complexity and heterogeneity of needs in autism are some reasons why we need a national autism strategy. As already highlighted, those are the reasons why nobody can speak for everybody. The many diverse voices within this spectrum are important not because they reflect different preferences of Canadians but because they also reflect the very diverse needs that our systems actually need to meet.
Our current sectors are organized in ways that have not often taken advantage of evidence. We recognize that many considerations are important in the development of health, education and social services systems, but at the core of them, there has to be the evidence for what works, for whom and when within an understanding of health economics considerations that help us build sustainable systems.
Investment in research is critical, from biology, as we need to understand all the different autisms and different complexities to intervention studies to help us understand what works for whom. Critical investment is also important for understanding the many different lived experiences, as already highlighted, across the lifespan — the infrastructure that will allow us to understand how to scale programs. We have many successful programs in Canada in small regions that never scale up across Canada to provide access nationally to autistic people.
For that reason, I think the recommendation for a national effort or national network that coordinates and integrates these lessons into actual systems is important, however we articulate this. We need to be able to measure the impact of our actions; if we put things in place, we need to be able to measure the effects of those elements so we can develop learning systems that continue to integrate the knowledge into our provincial and national infrastructures, with considerations of equity and fairness.
Currently, a fragmented, highly variable services sector across provinces, with no consistency of how this type of evidence on complexity and preferences is integrated, often leads to a situation where somebody’s address and postal code impact their ability to achieve a good life more than what the original brain and body biology would have predicted. That’s the tragedy of the current Canadian investment in autism.
We obviously have some unique Canadian considerations pertaining to our North and Indigenous people — and I won’t speak for them; they are here — and high numbers of new immigrants that add further complexity and require potentially federally facilitated coordination and commitment.
If we care about it, it’s also an opportunity for Canada to lead internationally in this space.
The Deputy Chair: I don’t like having to do this, Dr. Anagnostou, but we have a long list of senators who want to ask questions of both of you, so we will move to questions.
Senator Poirier: My question is for Dr. Anagnostou.
One of the measures in the federal framework for autism spectrum disorder is to provide a national research network to promote research and improve data collection on autism spectrum disorder. Could you describe what impact this would have in researching autism spectrum disorder and what would be the long-term impact for autistic persons?
Dr. Anagnostou: Thank you for the question. First, I would potentially recommend a slight rephrasing of that one that I think may have come through other stakeholders. It’s not that we need a new research network. It’s that we need a structure that coordinates the research data that is already being collected across Canada but is not integrated between provinces and within a national framework. So it could be a network, but it could be a research collaboration. We can envision very different structures that could accomplish this.
The idea here is that the research data has been generated, and we still need to generate that. I don’t want to pretend that we know everything we need to know to be able to make dramatic changes to autistic people’s lives, but the idea is that once the research data is generated, it needs to feed into a structure that directly moves into implementation, so it helps us think about to whom it is applicable and what it would take for this to be implemented in the local service care systems.
In fact, there’s been quite a bit of evidence that Canada punches above its weight in terms of research productivity, but we’re not implementing locally, and we have lots of examples where we’re implementing internationally but not locally.
If this happens, then you have this idea of a learning health system or an education system or social services system whereas the data gets generated within a structure like this it actually continuously gets incorporated into the service sectors that we build. Our service sectors learn from that implementation and keep changing their pattern based on the evidence so that there’s a continuous quality improvement that stays up to par with the evidence. I think that is the purpose of this, to make sure that families do not benefit from research 15 years later, but in the moment, in real time, research actually impacts lives of the kids and the youth and adults on the autism spectrum.
Senator Patterson: I will try and get two questions in if I can. First of all, I’d like to thank you both and ask a question of Dr. Anagnostou. As you’ve described, many persons diagnosed with autism have other disabilities, and you mentioned sleep disorder, anxiety and attention deficit disorder, amongst other things. I think that’s what is called “multiply involved” if my terminology is right.
I support this bill totally, but just anticipating a question we might get, could you explain how the complexities of autism warrant a targeted policy response and a national autism strategy as opposed to, say, just having a pan-disability strategy? Could you explain how these multiply involved issues warrant an autism strategy in particular?
Dr. Anagnostou: Thank you. That’s actually a very important question, and the comment would be fair if that comment were to come.
I would say that it’s the complexity that makes the implementation of evidence-based services across sectors particularly difficult and particularly difficult to coordinate across the different provincial systems. So although all kids with disability need to have their needs met, autism is almost like a prototype, if you like, of a complex disability.
One way to think about this is, first of all, in order to meet their needs, we need to do better than we’re doing now, and it looks like we need federally enacted mechanisms to keep us accountable wherever we practise and whatever our roles are. Second, if we get it right for autism, the learning from the complexity of autism will impact systems of disabilities even beyond autism.
There was an international effort to produce something called the Lancet Commission over the last year that we’re happy to provide. It made international recommendations about what can be done in the next five years to dramatically improve the lives of children, youth and adults on the autism spectrum; and one of the key points there was that if we can figure it out for autism, we have figured it out for a whole lot of other disabilities because of this exact complexity.
Senator Patterson: Thank you very much, and if I may, Madam Chair, very quickly, to the representatives of the Nishnawbe Aski Nation, you’ve really described very well the huge need for access to diagnosis and services for autistic Indigenous people in remote communities, and I’m well familiar with that.
I see that you’re both working in child development, and there’s a spectrum disorder action group. Despite these barriers that you’re facing and that you’ve described, can you tell us about your Autism Spectrum Disorder Action Group, and what you’re managing to do despite the challenges you face?
Ms. Desmoulin: Absolutely. As it stands, we have an autism action team, and our autism action team has a number of physicians who also sit on that team, including Ms. Anagnostou; she is also with us in this meeting. We have a number of community members. We have a number of parents and caregivers. We have a number of physicians that are assisting this action team and moving it forward.
All of the directions actually come from a regional network, a larger governing body, that is giving directions to all of these different action teams, and one of the action teams is our autism action team. Moving forward, we are taking a look at awareness and promotions in terms of autism, so a number of different guide books. These are things that we’re bringing forward to the community. They’re also translated. We’re taking a look at providing them on our parent network. We’re taking a look at providing outreach and awareness through social media platforms. Also, any kinds of training, capacity building, respite — all of these are important in moving and assisting our community members, our parents and our families. The other piece is education and school, and being able to assist in those areas.
The Deputy Chair: Do you have a report or a document that lists this? It would be very helpful to us. Dr. Anagnostou, you mentioned a report. It would be helpful as well if you could send that. We’re looking for guidance here to feed the framework — not to write the framework but to feed the framework.
Ms. Desmoulin: Absolutely.
Senator Kutcher: Thank you very much to the witnesses for being with us. There are a number of things about this bill that I really like, such as the legislation and the timelines. What I’m not clear about is whether the six items under clause 2(2) are the right six to be in the bill. We haven’t heard about safe and stable housing, the training of health care providers, the diagnostics and treatment or employment. We haven’t heard about cultural or Indigenous peoples. Are these the right six, and if not, what should the right six be?
The Deputy Chair: Ms. Desmoulin, do you want to start this one? I’m afraid I have cut you off a couple times. Why don’t you take the lead on this?
Ms. Desmoulin: What is the question?
The Deputy Chair: The question is whether the six items in the bill to take action on are the correct items, or if there should be others. If you don’t have the answer now, again, reflection and writing it to us would be of help.
Ms. Desmoulin: A lot of times in the big picture and in the big scheme of things, what is missing currently is an Indigenous voice. I think there is a lack of research. We’re not trying to change the bill. We’re trying to assist in making it a very strong one.
One of the key things that is missing is that research and that data. That dialogue has not been there. As far as I’m aware, and as far as I know, there has not been a lot of dialogue within our First Nations communities. We, in Ontario, for Nishnawbe Aski Nation, we cover 49, and I have not yet been made aware of any clear, meaningful, engaging dialogue with our communities in regards to data and information and research for autism.
Dr. Anagnostou: I would very quickly say I endorse the idea that the bill stays vague as to principles, because the Canadian Academy of Health Sciences report is coming, and it speaks to a lot of those issues, as you will see, including the Indigenous experience. It will inform the national autism strategy. What we need the bill to do is to create the accountability and enactment mechanisms rather than get into the details of what is to going to come out of the Canadian Academy of Health Sciences report and its impact on the national autism strategy.
Senator McPhedran: I think my question is primarily to Ms. Desmoulin, but I’m happy to hear from both witnesses. In relation to section 2(3) of the bill that looks at consultations, my question is this: What would be your advice to us in terms of ensuring equitable access to consultations? In particular, could you speak to us about Indigenous communities and communities that are located in more remote and/or rural areas of our country?
Ms. Desmoulin: Thank you very much for that. I would say that there needs to be an approach in acquiring information from our communities. There needs to be a coordinated approach to be able to gather data and information that’s going to assist and, I would say, make the strategy applicable and be able to meet all of those needs of our communities. I think there is just not enough information in regards to our communities in terms of what services are being provided and the number of autistic members. These are very, I would say, basic and very foundational pieces that we are lacking. We are lacking that information and that data. It would be very difficult in moving forward and finding the ability to make a bill or strategy fit our communities and our members if we do not have the structures in place to support that.
Dr. Anagnostou: I would not pretend to speak to the Indigenous experience and needs. You have the writing there.
I would say one suggestion is that a question came up much earlier today about how the national autism strategy, the Canadian Academy of Health Sciences report and this bill fit together. I would suggest that some framework gets developed that considers them as complementary to each other, because there has been quite a bit of engagement already in certain aspects of this pipeline, and it would be very important in the enactment of the bill.
We would like you to have as much lived experience represented in the consultation for the bill. Do not be disheartened by the diverse perspectives. They don’t reflect disagreement; they reflect different experiences, because there are many different autisms, and that is the complexity of the issue here that you are addressing with a potential bill.
To also reference the significant engagement that has happened in the Canadian Academy of Health Sciences report, that was strategic and went across communities, and you will find lots of answers in this report as it comes forward in the next month or so.
The Deputy Chair: Ms. Arseneault or Ms. Achneepineskum, would you like to add to this? You’ve been very silent, and I wonder if you would like to add your thoughts to Senator McPhedran’s question, or have your thoughts been covered?
Anna Betty Achneepineskum, Deputy Grand Chief, Nishnawbe Aski Nation: If I can just make a few comments, please. In terms of our citizens that live in remote communities, we do have documentation in terms of the lack of services and lack of access to services and resources. Also, to ensure they are part of any type of consultation processes, and in terms of them being included in any data collection, we do have evidence of that.
What we’re looking for is to ensure that there is a framework that will acknowledge that and ensure that does not continue.
Senator Bernard: This question could go to any of the witnesses, so if you’re able to respond to this, I would appreciate it, and I thank you for being here this evening.
I want to ask about the framework, and if you believe there’s scope within this framework to specifically address the need for an intersectional approach. We’ve certainly heard from the Indigenous witnesses about the lack of services, the need for culturally responsive services and the need for that inclusion.
I know from the community that I’m a part of, people of African descent, it is very, very challenging to even have conversations around autism, and there’s definitely a lack of supports to address that intersection of race, racism, and autism.
So is there scope within this framework to intentionally ensure that issues of intersectionality, beyond the bridging of the rural/urban divide that we’ve heard about this evening, and those realities being faced by many of our community members dealing with autism are being addressed?
Dr. Anagnostou: Senator Bernard, thank you very much for that question. It’s an extremely important question.
Long-term outcomes are not just predicted by our brain and body differences. They are predicted by our experience of our differences in this world. Of course, the more identities a person accumulates, the intersectionality between those identities makes navigating that experience harder and harder. We know that autistic kids who are in marginalized communities — for example, if they are poorer or if they have other types of intersectionality, like transgender kids, who are overrepresented in the autism community — have poorer outcomes, so I think the issue of intersectionality is critical.
I would defer to my colleagues, though. You surprised me with this question, so I want to give it a bit more thought. Usually, because of where I’m coming from, I think of those issues in terms of research and implementation, which is part of what predicts good outcomes and understanding. How procedure addresses the implementation of appropriate strategies is what predicts quality of life, so I think of them in that way, but you have challenged me to think about whether this may deserve its own category.
The Deputy Chair: Would anybody else like to respond? As you know, we’re happy to receive thoughts after the session closes, so don’t hesitate to get in touch with the clerks. Senator Bernard, you have one more minute if you have a follow-up question.
Senator Bernard: I’m wondering if anyone has thoughts about whether or not there would be a need for a specific framework for First Nations, Inuit and Métis peoples.
Ms. Achneepineskum: I’ll make two comments, and then I would like for Ms. Arseneault to respond as well.
We do appreciate your comment, senator. I believe we require a particular strategy to highlight the needs of and the disparity involving First Nation citizens, not only in Ontario but also across Canada — especially for those who have already gone into crisis mode. We have high rates of children who have gone into the child welfare system because they’re unable to access services and resources in the residence they share with their parents. That in itself is a crisis. Thank you.
Wendy Arseneault, Director of Child Development, Nishnawbe Aski Nation Autism Spectrum Disorder Action Group: I agree with Deputy Grand Chief Anna Betty Achneepineskum. I think we need to look at a separate framework due to the unique needs and challenges of our northern communities, but I also see a need for it to be aligned with the discussion about the national framework, as well as this bill. We are building relationships and collaborations with mainstream providers along with our First Nation health authorities. We need to integrate both sides of those practices.
There could be a particular focus on ensuring that culture and language are integrated into the framework to assist the mainstream providers in adapting their practices to better fit the needs of our communities. We can’t do it by ourselves. We need to have that support within this bill and within the national framework.
The Deputy Chair: We just have a few seconds before our technical team has to leave us. Senator Moodie, you get to ask the last question.
Senator Moodie: My question is for Dr. Anagnostou. You talked about the complexity of and the gaps in the system before. We are looking at six selected areas in this bill that seek to attend to the needs of autistic children and families once the diagnosis is made. I spoke earlier about the fact that getting a diagnosis is often a bigger challenge than we would like. In many communities here in Toronto, it’s the same.
There’s nothing in the bill’s six recommended areas that speaks to ongoing clinical care, diagnostic care or therapeutic care. Speech language therapy, for example, is one of the hardest supports for families to obtain. Can you give me a sense of whether that’s a missing element here? Should we be thinking about that kind of care, or is it going to appear in the strategy that’s coming out in the report from the Canadian Academy of Health Sciences?
Dr. Anagnostou: Thank you for the question. I did contribute to the Canadian Academy of Health Sciences report, but I can’t disclose anything yet because you haven’t seen the report.
I’m a little bit stuck in between the two, but I think it’s a strategy decision. You are the experts on what it takes to pass bills that enact other evidence. The data will be reviewed in the report, and there will be specific recommendations about screening, diagnosis and clinical care across a person’s lifespan in addition to employment, housing and social justice issues.
The question is whether you feel that in a practical, pragmatic way, these issues need to make it into this bill specifically, or if this bill can vaguely refer to those and focus on accountability and enactment. I would leave the question with you, but these recommendations are coming.
The Deputy Chair: Colleagues and witnesses, I want to thank you. Thank you to all three panels. It’s been an informative, important, interesting afternoon. On behalf of all of us in the Senate, I want to thank you for your time, knowledge and experience, as well as your candour and openness. I know these are hard issues, so thank you for your honesty.
In saying thank you, I have to apologize. I know I cut two of you off, and you didn’t have the opportunity to give the last paragraph of your opening remarks, because we ran out of time. We can add those last paragraphs into the transcripts if you so wish. I leave that to you.
Again, I want to thank you so much for your engagement with us. Senators, witnesses, there’s no other business, so this meeting is adjourned. Thank you.
(The committee adjourned.)