Federal Framework on Autism Spectrum Disorder Bill
Third Reading
May 12, 2022
Honourable senators, I rise today to speak to Bill S-203, An Act respecting a federal framework on autism spectrum disorder.
I’d like to begin today by telling senators the story of William McLaren. I am thankful to his mom, Claudine, who works for me as my director of parliamentary affairs, for giving me permission to share this with you all.
Will was born fully blind due to a relatively rare diagnosis that is not preventable and very hard to detect. Basically, his optic nerves and the part of his brain that they would connect to did not fully form.
As a result of his blindness, Will was followed by many different services at the Ottawa Children’s Treatment Centre and it was there, at the age of 4, that it was first suggested Will might be autistic. However, it’s hard to make a diagnosis at such an early age. It also requires a certain expertise to make such a diagnosis in a blind child because so-called blindisms are very similar to indicators of autism such as texture aversions, not making eye contact when you speak to others, and getting overstimulated easily.
His parents decided to wait until he was older to explore the potential autism further but were hyper-aware of potential indicators and were able to work autism-intervention strategies into their son’s individual education plan, or IEP.
Later, at the age of 7, it became apparent that it was time to revisit this possibility. The wait time, however, for a free assessment by the school board was years long and there was no expertise within the school board to make a diagnosis of a blind child. Thankfully, Will’s parents were fortunate enough to have the resources to find a private psychologist who was able to diagnose him.
Even so, with COVID restrictions for external professionals entering schools, the assessment has taken over a year to complete and cost $2,500. While they are still awaiting the final assessment report, they and the school have been told to proceed with an unofficial diagnosis until all the paperwork could be completed. Thanks to the excellent support of his teachers, education assistants, principal and vice principal at Carleton Heights Public School, he has been able to flourish.
Colleagues, this story is significant because, while it is a good news story for Will, there are many instances where this story could have taken a tragic turn for many others. It’s possible that parents would not have received any early indication of autism and not known what to look out for as their child grew and developed. Parents may not have had the advocacy skills required to put in place a comprehensive IEP or may have faced resistance within the school to implementing autism intervention strategies ahead of a final diagnosis.
Other potential barriers to accessing services include the $2,500 private assessment fee, which may have prevented many families from jumping the long queue to access services. Geographical considerations may have limited the amount, type or quality of services available. This is particularly true for families with children who are multiply involved, that is, who have two or more diagnoses, because they would often require access to specialized services and professionals.
What Bill S-203 would do is require the government to create a national framework on autism spectrum disorder based on consultations with various stakeholders. While the bill lists several points for inclusion in the framework and outlines many of the stakeholders that should be included in the consultation process, it is important to note that amendments I proposed, and that were subsequently accepted, clearly noted that these lists under clauses 2 and 3 are not exhaustive. I agree with Senator Housakos’ approach of not being overly prescriptive so that the minister has flexibility to decide what issues and which stakeholders should be included.
I feel it important to underscore the fact that this is not the framework, this is the mechanism to create it. The bill also sets out accountability measures to ensure that the framework is created within 18 months of Royal Assent. It also requires a review after five years of that framework being tabled to study the efficacy of those measures that had been implemented and to get a response as to why other measures may not have been implemented since the framework’s tabling.
It is my hope that senators see the importance of this bill and the need to move it through our chamber expeditiously so that we can make this a law and begin the hard work of addressing the gaps and barriers that families and neurodivergent persons face every day, as I have described in Will’s case.
We heard in committee how previous attempts to create a similar framework have failed, so I want to congratulate Senator Housakos as sponsor and Senator Loffreda who, though given the title of critic, has been very supportive of this bill. I know that this topic is personal for many senators in this chamber and it is my sincere hope that this bill will succeed where many other efforts have failed. The next step to that goal is passing this bill in our chamber — hopefully today.
Thank you, honourable senators. Qujannamiik.
Honourable senators, I rise today at third reading to speak to Bill S-203, an Act respecting a federal framework on autism spectrum disorder.
At the outset, I want to thank our colleagues who spoke to the bill and those who participated in the hearings of the Standing Senate Committee on Social Affairs, Science and Technology. While I am not a member of the committee, I made sure to attend the meetings. I want to extend my thanks to Senator Omidvar for the way she skilfully presided over the meetings and dealt with the bill. I appreciated her detailed account of the work of the committee in her remarks at the report stage last week. I also want to thank all the witnesses who appeared before the committee and whose testimony was very compelling and insightful. I think it’s fair to say that there is general support for this bill.
When I rose at second reading as a friendly critic of this bill, I expressed my long-standing commitment to the autism community in Montreal and elsewhere.
Senator Housakos and I worked on some community initiatives that would provide adequate, affordable and tailored programs and services to people with autism spectrum disorder, or ASD. One example is Giant Steps, a school in Montreal.
I don’t want to repeat everything that our colleagues have already said, so I simply want to say a few words about how urgently the autism community in Canada needs this bill to be passed. We must make it abundantly clear to this community that the Senate of Canada is an ally and wants to pass legislation that will compel the government to establish a national framework on autism.
Esteemed colleagues, this bill is relatively simple. It would enable the federal minister of health to establish a federal framework on autism spectrum disorder, in consultation and partnership with other ministers, with the provinces and with stakeholders.
It’s clear to me that the autistic community in all its diversity — patients, families, caregivers and supporters — is at the heart of this bill and the implementation of a national framework, and Senator Housakos made that clear to us both in this chamber and in committee.
To be certain, the Social Affairs Committee amended the bill to make sure — in case it wasn’t already — that the definition of “relevant stakeholders” in the section of the bill that deals with government consultation includes self-advocates, persons with lived experience, including caregivers and support persons, service providers, representatives from the medical and research communities and from organizations that focus on autism spectrum disorder in Indigenous communities.
I also welcomed the committee’s amendment to clause 2(2)(d), which shifts the focus from establishing a national public awareness campaign to national campaigns to enhance public knowledge, understanding and acceptance of autism spectrum disorder, while accounting for intersectionality in order to foster inclusivity. Witnesses called for this amendment. During committee hearings, Jonathan Lai, Executive Director of the Canadian Autism Spectrum Disorder Alliance was clear about it. He told the committee:
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.
He continued:
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.
Senators will remember that the government has also been engaged in consultations on establishing a national autism strategy. There was some discussion on this matter in committee and whether Bill S-203 was duplicative. I don’t want to dwell on that matter, but allow me to quote the sponsor of the bill in committee who reminded us that an autism framework, which is what Bill S-203 seeks to implement:
. . . 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 message was echoed by Dr. Jean-François Lemay from the Alberta Children’s Hospital who also believes that:
This bill will serve as a springboard to help create the space to codesign and develop new, innovative solutions leveraging Canadian and international knowledge.
Our esteemed colleague Senator Boehm, during his speech at second reading, also argued that:
. . . the appeal of the bill is that it is general, recognizing that there are jurisdictional issues and varying approaches in dealing with ASD across the country. Hence it is a framework within which a national autism strategy could be created.
In fact, Senator Boehm may recall that, just a few weeks ago, when the Public Health Agency of Canada appeared before our National Finance Committee, I asked officials from the agency to provide us with an update on the development of the strategy. In a written response received on May 4, the agency explained that it received $15.4 million over two years in Budget 2021 to support its work in the development of the strategy. The agency provided us with several key milestones that have been achieved in recent months.
We were told that there has been engagement with provinces and territories through a new federal-provincial-territorial working group on autism, along with Indigenous engagement. We were also reminded that the Canadian Academy of Health Sciences is consulting broadly and just released its comprehensive assessment report on autism two days ago. A national conference to build consensus on the priorities for action is scheduled to take place on November 15 and 16, 2022. Finally, the public release and implementation of a national autism strategy are scheduled for the spring or summer of 2023. This is encouraging news.
However, what differentiates the strategy from the framework being proposed in Bill S-203 is that this bill compels the government — by law — to develop a national framework. The national strategy is a policy decision, not a legislative requirement. If enacted, Bill S-203 would make sure we hold the government to account. It forces the minister to table a report in both houses of Parliament setting out the federal framework, and ensures a review and assessment of the framework within the first five years.
Honourable senators, this bill is a good one, and I thank Senator Housakos for bringing it forward. The committee did great work and made changes that strengthen the bill, and I think it’s time for the Senate to unanimously adopt this bill today.
Together, we could send a strong and united message to the autism community that we stand behind them as we put pressure on the government to develop and implement this national framework. This bill gives the government a pretty good road map to consult widely and address an array of issues without being too prescriptive.
Once implemented, I have no doubt this bill will find innovative solutions to unique problems and inadequacies in the ways we support — socially, financially, culturally and otherwise — individuals living with autism. It will also help reduce barriers and provide greater opportunities for autistic individuals to grow, prosper and contribute to our society and economy.
After all, let us not forget who this bill is for. It’s for all individuals who are on the autism spectrum disorder, their families, their caregivers, their advocates and all those who play a role, big or small, within the ASD community. Let’s pass this bill for them.
Thank you very much.
Thank you, honourable colleagues. I want to thank all my colleagues for their collaboration on this very important bill. I also want to thank the Standing Senate Committee on Social Affairs, Science and Technology, committee chair Senator Omidvar and all members of the committee for their significant and important contributions to this bill in such a short period of time.
I also want to say how proud I am today, because it is in moments like these that I feel we are fulfilling our role, as senators and as an institution, to advocate for minorities, for people who may, from time to time, feel forgotten by their government, their Parliament or their society. Today, we can be proud of this institution.
I also want to sincerely thank Senator Boehm, whom I feel has been the co-sponsor of this bill since the start. He has given his unflagging support to this bill at every stage. I am also very grateful to former senator Jim Munson.
Senator Munson, for years, was a strong advocate for people on the spectrum and for people with special and unique needs. Even though he is no longer in the chamber with us, of course, this bill speaks to his heritage and his work, as well as that of all senators who worked so hard for so many years to put this issue on the table with the historic report Pay now or pay later: autism families in crisis, done a number of years ago, that brought a lot of attention to the cause.
Aside from Senator Munson, of course, I want to thank all my other colleagues who have come on board and embraced this cause. We all have personal stories that touch us. Thank you for your speech, Senator Loffreda. Senator Loffreda and I have been fighting for this cause for many years, and he brought up Giant Steps, which is close to my heart and his. I want to thank all the stakeholders who participated in putting together and supporting the legislation and who testified before the committee, particularly the Canadian Autism Spectrum Disorder Alliance, or CASDA, and the dozens of advocates and members that CASDA works with across the country.
I have been involved with this issue for a number of years, and there are two recurring themes when I talk to family members of children, particularly, who are afflicted with autism spectrum disorder. They say, “Senator, we feel alone. We feel helpless.” If our institution can pass this bill and send it to the other place, calling for what has been needed for a long time, a national framework to serve as a springboard that will hopefully become a national strategy on autism, then we can send a clear message to those Canadian families, grandparents, parents, brothers, sisters and friends who are dealing with the challenges of autism: We have been hearing you. We are listening. You’re not alone and you’re not helpless. We feel you, we will respond and we will be there in solidarity, because at the end of the day, those are just words for me. I think a society can only achieve its true greatness if we use our resources to make sure that no child is left behind and that we take advantage of the wonderful skill sets every Canadian has to offer.
I also want to thank my wife, who just finished her master’s degree in health administration from McGill University. It was her master’s paper that served as the inspiration for me to sit down with Senator Boehm and Senator Loffreda and all my colleagues to push forward this project. I also want to send a thank you to a young, brilliant man, Manoli Katalifos who, 20 years ago, introduced me to autism spectrum disorder. He has ever since become one of the people I advocate for. Manoli, thank you. This is in large part for you.
Colleagues, this is just the beginning.
I hope we pass this bill unanimously and send a strong message to the other place. Of course, the work doesn’t end there. We all need to advocate, and I call upon Senator Gold to put his shoulder to the wheel one more time once we pass this bill to advocate for our institution and this bill in the government. I hope that all parties over in the other place embrace this and receive it in the spirit in which the Senate is sending it over there. I hope it serves as a tool for them to build an autism strategy that responds to today’s challenges that the autism community faces and to tomorrow’s challenges as well. Thank you, colleagues, for your indulgence, support and hard work. I hope we do send a clear message of great things to come.
Thank you.
Is it your pleasure, honourable senators, to adopt the motion?
Hon. Senators: Agreed.
(Motion agreed to and bill, as amended, read third time and passed.)
