Health Committee on Dec. 8th, 2022

[The Chair, Liberal, Sean Casey]

Thank you, Dr. Ellis.

We'll go to Dr. Powlowski, please, for six minutes.

[Marcus Powlowski, Liberal, Thunder Bay—Rainy River, ON]

Thank you.

Thank you, Mike, for bringing this important legislation forward. You mentioned that your concern and the concern of all parents of autistic kids is, “What's going to happen when I'm gone?”

I think in this position, in Parliament and with this bill, you have a unique opportunity to materially affect that. This legislation will presumably outlive you.

With that in mind, I wanted to ask what the federal government can do in order to ensure that services are maintained for autistic individuals when we know that most health care is a provincial jurisdiction?

As you may or may not know, the Ford government in Ontario has been heavily criticized for drastically cutting services for autistic children. I don't expect or want you to start criticizing Ford and the Ford government, but health care and this kind of funding are generally provincial.

I think you would like to see and ensure that, for example, your child continues to have those services when you're gone. You've been a federal politician for a fair bit.

What can we do, given the jurisdiction issue, to try to ensure that autistic people across Canada continue to have those services?

[Mike Lake, Conservative, Edmonton—Wetaskiwin, AB]

You've touched on an important point. My approach on working with governments....

I'll point out this. The reason Michael Coteau is seconding this from your side is because I've known him for a long time. I've known him for a long time because when the Wynne government was getting things wrong on autism, I reached out and helped them behind the scenes, just like I do with any provincial government of any stripe.

In my experience, provincial governments always start on the autism file by getting it wrong. Always. My hope is that a national strategy helps to alleviate that situation, so that when a new government is elected, whatever the political stripe, that government has an evidence base that it can turn to and an expert base that it can turn to that includes autistic Canadians, researchers, the health community, families, stakeholder groups and a community that comes together to find common ground and communicate it in a way that makes sense to governments.

Too often, right now, governments come into a context that is politically polarized in every way, but in the autism community, it can be hard to make sense of what the evidence base is right now. I think a national strategy would work to bring that evidence base together.

The other thing I'll say about provincial governments broadly, though, is that every one of them wants to get it right. I've found that when I'm having conversations with them behind the scenes—I tend to have those conversations behind the scenes with an attitude toward helping—there is a real spirit of wanting to get it right.

This is what I'm hoping. This is where I think a national strategy comes into play in helping in that regard.

[Marcus Powlowski, Liberal, Thunder Bay—Rainy River, ON]

Thanks.

The second question is on the cuts by the Ford government to funding for services for children with autism. It would seem to me, and I've heard from some people, that there is often funding for children with autism, but how about when they become adults? Does that funding continue, and how much support is there for people, grown-up individuals, with autism, particularly related to, for example, their job situation? For everyone a major part of life is having a job and keeping on with that job. I think that would probably be harder for an autistic individual.

Furthermore how much support is there for autistic people when they start to get older? When you're young—even with your son in his twenties, he still has mom and dad around, family members, but how about in another 40 or 50 years when you're not there? How much support is there for elderly people with autism?

[Mike Lake, Conservative, Edmonton—Wetaskiwin, AB]

There are a lot of questions worked into that one question. I've been on this committee with you long enough to know this isn't the first time. You know what? It seems that there was a real focus on young people and early intervention and those kinds of things back in the early 2000s. The wave of real awareness of that has now moved into adulthood. There was a point in time when we talked about people sort of falling off the cliff when they turned 18. That's a real experience for a lot of people.

As we move forward, we talk a lot about inclusive education and what that looks like. Getting inclusion right in education is important, but we're also talking a lot now about inclusive workplaces.

What does inclusive housing look like? We are better off when we're surrounded by people who are different from us, when we're surrounded by the full diversity and range of humanity in Canada. That goes not just for education but in every way. I often say to people—and I said it in my speech to the House—that when I'm surrounded by people who are exactly like me, then there's no one to compensate for my weaknesses, and my strengths aren't strengths anymore because everybody around me has the same strengths that I have.

There is a real question and a real opportunity for us as we move forward to build a more inclusive society not only in the school system but also in workplaces, housing and beyond.

[The Chair, Liberal, Sean Casey]

Thank you, Mr. Lake.

Mr. Garon, you have the floor for six minutes.

[Jean-Denis Garon, Bloc, Mirabel, QC]

Thank you, Mr. Chair.

Mr. Lake, thank you for being here with us today, this time as a witness.

Partisan lines are always very in evidence at Parliament, but here in committee meetings we meet extraordinary people who fight long and hard for wonderful causes that are truly admirable. Today, we are hearing two parliamentarians that fall into this category: Ms. Romanado and yourself, Mr. Lake. Please note that I admire the work you do greatly, and I say that sincerely.

I took the time to discuss with people who work with families who have autistic children. I don't know any such families, so it's not something I know a lot about. Two workers told me the same thing: when efforts are made to integrate autistic children so that they can function and attain their full potential and be the best they can be as human beings, the problem does not stem from the children, but from us. The problem is the way that we perceive and treat these children, and it's our own lack of adaptability.

I would like to know what you think. In concrete terms, what is it like for a family that lives with autism?

[Mike Lake, Conservative, Edmonton—Wetaskiwin, AB]

That's a great observation.

When I think about conversations I've had with people who have autism or autistic Canadians—well, autistic people from around the world—there are a couple of things that come up. There are many things that come up, but the conversation is around the inclusion piece, and then there's a conversation around autonomy.

The autonomy question is always tricky for me, because it's difficult to imagine Jaden being fully autonomous, because Jaden doesn't understand danger. My son is very significantly affected. He's non-speaking. There's terminology that gets tricky for people, non-verbal, non-speaking, whatever terminology you use. Some people would say non-verbal. He's verbal with “ba ba ba ba ba”, and when he's doing that, oftentimes it sounds silly, but I'll look him in the eyes, and I'll go, “ba ba ba”, and he'll go, “ba ba ba ba ba ba”. It's the most engaged he ever is with me on a personal level. I don't know what we're talking about, but he does, and it means something that we're having that conversation.

Autonomy for Jaden.... What I've been really challenged by self-advocates on is that I walk away from those conversations, and my first instinct is to say, “Well, Jaden can't be fully autonomous”. I get a little bit defensive as a Dad, I think, in a sense. When I walk away from it, I think that he could be so much more autonomous than he is. We can give him more choice in what it is that he wants to do. We need to learn to be patient with him.

With Jaden—he's shorter than I am—I'll get down to his level. If he's sitting down, I'll sit down beside him and try to get down to his level. I have to read his skin tone, his facial expressions and his eyes when he's talking to me. Sometimes if he's nervous, he'll shake, but he'll never tell me how he's feeling. That's a really abstract communication. We really have to spend the time to really try to understand and be patient with him.

One of the challenges with him is that we almost always, in our impatience, decide for him or try to guess what it is that he wants when, oftentimes, if we just wait on him a little bit, he'll type it into his phone, or he'll point to something. There are times when he is trying to tell us something, and he goes, “ba ba ba ba ba”, and we're just too busy trying to move on with things, get in the car, whatever it is, and race away, and you realize that he's telling you that you forgot your iPhone back there. He noticed it, and he goes, “ba ba ba ba ba”, and you're discounting what it is that he's saying, and he has something he's trying to say.

We just need more patience, and as we learn to communicate with Jaden, we learn how to better communicate with everybody else around us, too. We become better for what we learn in that process. These are things that I've learned from listening to self-advocates, listening to autistic Canadians talk about what life is like and listening to autistic people from around the world who way too often are not listened to, even as we've been having conversations over the years on what to do to help people with autism. We haven't listened to people with autism as we're having those conversations.

[Jean-Denis Garon, Bloc, Mirabel, QC]

I only have a minute left, but I think my question will take longer to answer.

I don't want to weigh into the areas of federal and provincial jurisdictions. I don't want today's discussion to be about that, but the issue of jurisdiction remains. So I'm going to quite naively ask you the following question.

If tomorrow morning, you woke up as the premier of a province and that province was to be the model for all the others, where would you start?

[Mike Lake, Conservative, Edmonton—Wetaskiwin, AB]

I would recognize those areas that I've talked about.

With my own knowledge base, if I were the premier of a province, I would start by recognizing that you have to take a look at the lifespan. You have to talk about across the spectrum and across the lifespan and deal with all of those things at the same time.

The ideas of inclusion and autonomy kind of crosscut all of the different things that I was talking about.

Six main areas is not a big number. You have to recognize that if you get the diagnosis piece right, you're going to be helping people earlier. This goes for anybody. All of us were better off when we got help with things we were challenged with or when we got reinforced on things that we were good at. We're better off when someone started early with us. It's no different, but then you're going to lead to better outcomes in the education system. You're going to lead to better outcomes in employment and in housing.

I think that probably where it starts is just making sure that you start by getting really good information from the community around you, which includes autistic Canadians, experts, scientists, researchers and families, and that you're having that conversation, but not waiting for unanimity.

The problem in Canada right now is that everybody is waiting for unanimity, and you're never going to have it. We have to move. There are a lot of things that we know work, and we have to move.

[The Chair, Liberal, Sean Casey]

Thank you, Mr. Lake.

Mr. Davies, you have six minutes.

[Don Davies, NDP, Vancouver Kingsway, BC]

Thanks, Mr. Chair. Thank you so much, Mike, for not only being here today and sponsoring the bill but also for your many years of great work in this area.

Mike and I share something. My youngest daughter has a developmental disability. It's not autism, but it's allowed me to experience many of the the same things Mike has experienced. More importantly, it's allowed me the privilege of meeting people in the diverse needs community and to be exposed to the love, skill, and talent that is there.

In the last election, the NDP committed to a national autism strategy. I know the Conservatives made a very strong election commitment in their 2021 platform. The Liberals provided $15.4 million over two years in the 2021 budget to create a national autism strategy. Bill S-203 was adopted unanimously by the Senate at third reading on May 12, 2022. There's a great consensus in Parliament across party lines. I'm really pleased to see this bill come forward.

I have some specific questions, Mike.

What steps are you aware of that have been taken to seek input from the autistic community with respect to this legislation to date?

[Mike Lake, Conservative, Edmonton—Wetaskiwin, AB]

The Public Health Agency just had a two-day session, where there were many autistic people who were part of the panels. That was way better than I've seen in the past. I know that the Canadian Academy of Health Sciences has been working for almost two years. It came out with a 400-plus-page report in May that is going to be the foundation moving forward from where we are right now. There was a lot of autistic input into that report, more than there has been in the past.

We're seeing some people with autism now who are researchers weighing in on some of these conversations. In fact, during the committee study at the Senate, there was a researcher who had autism himself and who weighed in and was a part of that consultation. In fact, there were several autistic Canadians who were part of the Senate hearings, if you take a look at the two days of hearings.

[Don Davies, NDP, Vancouver Kingsway, BC]

By my count, there were 13 witnesses that appeared before the Senate standing committee. That evidence improved the bill. One change that was inspired.... The original bill, in the preamble, described autism as a lifelong neurodevelopmental impairing disorder. It caused the Senate to take out the word “impairing”.

Do you have any thoughts about the word “disorder”?

There are elements in the autistic community that perhaps don't share the view that it's a disorder. Maybe it's a condition.

Do you have any thoughts about the terminology used in the bill in that respect?

[Mike Lake, Conservative, Edmonton—Wetaskiwin, AB]

I generally avoid the word “disorder” myself. There was a lot of conversation. If you take a look at the testimony at the Senate or at the discussion around amendments at the Senate, you'll see that there was significant discussion about the word “disorder”. The Senate decided to leave it in, in the sense that it's a medical term that is actually defined.

The feeling in general was.... In terms of this particular bill.... Remember, this bill is not establishing the national strategy. The bill is to set accountability and timelines around.... The argument was made that we'll let the government, as it establishes the strategy, let autistic Canadians and stakeholders weigh in on those types of conversations. It was a significant point of conversation during the hearings.

I just try to use the word “autism” when I'm talking. I will point out that the Canadian Autism Spectrum Disorder Alliance recently changed its name to the Autism Alliance of Canada for that very reason.

[Don Davies, NDP, Vancouver Kingsway, BC]

Mike, you've touched on the incredible diversity across the spectrum. Again, you can have profound non-verbal Canadians with autism all the way to exceptionally gifted and highly verbal autistic Canadians.

Do you see the strategy as being able to embrace that full diversity across the spectrum, and do you have any pointers or thoughts on that?

[Mike Lake, Conservative, Edmonton—Wetaskiwin, AB]

Absolutely.

I talk time and time again about getting out of this mentality that everybody with autism only needs to be helped, and everyone without autism are the helpers. That is not the way the world works. We are robbing ourselves of incredible potential in our country to solve some of the big problems we're dealing with in this committee, in other committees, or with the government all the time. If we get this right, we cultivate skills and abilities that we're short of right now in our country.

I think there is a full range. There's a very common saying that “If you've met one individual with autism, you've met one individual with autism.” There is a real range of diverse skills. There are obviously some commonalities that lead to a diagnosis. There's a reason there's diagnosis for it. We could have conversations about that, but, by and large, the biggest thing is the takeaway that there's a huge potential to getting this right.

[The Chair, Liberal, Sean Casey]

Thank you, Mr. Lake.

We have Mr. Zimmer, please, for five minutes.

[Bob Zimmer, Conservative, Prince George—Peace River—Northern Rockies, BC]

Thank you, Mr. Chair.

Thanks, Mike, for being here, and for laying the groundwork for a conversation about this. I've been here since 2011. You've been here longer. Ever since I've been here, you've been talking about the needs for autism. Really, awareness is probably the most important thing, but that's backed up with this question: Now what?

Diagnosis is one big part of that. Once you're diagnosed, then what? Parents want to know what to do with a child of theirs who they love and happens to have autism of some sort along the spectrum, whether they're higher functioning or lesser functioning.

I know you're dealing with this first-hand with your son. I really like what you're doing in the bill, but I think what matters to you and matters to us is outcomes. It's nice to have a pretty bill with a bow on it, but you want it to function. You want it to work.

I'm going to dig down into some of the terminology:

Measures to be provided

timely and equitable access

financial support

support for caregivers

and

a national research network

I know you're limited in what a private member's bill can actually do. I know. What does “timely and equitable access” mean? What does it mean to you? That's my specific question. What does “financial support” mean to you? What does “support for caregivers” mean to you? What does “national research network” mean to you?

I'll end my preamble. I've seen what you've done in B.C. You've always been an advocate for funds for local and provincial entities, but you've faced headwinds. I saw it in 2016 and 2017. You asked the government for about $20 million to fund autism across the country in a network, and it didn't make it into the budget. This needs to be backed with some kind of action for this work.

I'll get back to my questions. What does “timely and equitable access” mean? What does “financial support” mean? What does “support for caregivers” mean? Those are three simple questions. What do they mean to you?

[Mike Lake, Conservative, Edmonton—Wetaskiwin, AB]

I'm going to try to remember them as I go. You worked a lot in there.

“Timely and equitable access” is the easiest one, right? People are waiting way too long to get their start. In Jaden's case, we knew he had autism around the time he was two. It was around his second birthday. This was fast relative to where we are now.

It took a few months before we were able to start a program with him. That program completely changed his ability to communicate with us. It completely changed his ability to understand the world, seemingly, and our ability to connect with him. We all know how important connection is to things like mental health and, actually, physical health. Our connection level increased almost immediately, within weeks of him starting his program. It kept increasing.

Every young person is going to progress on a different path, but I believe that he is much more able to connect with the world around him because of the help he got. If we had waited for that, if it had taken too long.... We know there are windows where that help is going to be more effective.

If you take a look at diagnosis, there now are adults who are diagnosed with autism. They're in a different place on the spectrum, but there are adults who are diagnosed with autism. Their life changes once they have a diagnosis and the understanding that comes with that diagnosis. It's a different form of help that may be available to them. Again, it's to mitigate challenges and to help them unlock potential. That's what “timely” is.

The “equitable” part of it is dependent on where you live. The circumstances have been completely different across the country over time, and that's obviously a significant challenge.

On the jurisdictional question that Jean-Denis was asking, I'm from Alberta. Jurisdictional issues are important to folks in Alberta as well. What B.C. is doing is different from what Alberta did, which is different from what Ontario is doing. Right now, if you talk to families in those provinces, most of them are often fighting for a continuation of the program they're used to, even though those programs are completely different in each of those places. They're fighting for at least a continuation or for an extension of those programs to families who don't have the help in the first place.

Equity is about providing an evidence base so governments can make those decisions and, hopefully, so people get the help they need. That's without—as Stephen was saying—having to move halfway across the country to get that help.

[Bob Zimmer, Conservative, Prince George—Peace River—Northern Rockies, BC]

That amount, $20 million roughly in 2017, establishing this framework, if this is to be achieved and successfully achieved, and Mike Lake sits back and says it worked, here it is and it's functioning, how much is it going to cost? What's your estimate? What is it going to look like? It's obvious from what you've laid out here what that looks like, but maybe just explain what the cost is going to be, because I think the government.... I was going to ask you, too, are you confident that the money will follow this framework?

[Mike Lake, Conservative, Edmonton—Wetaskiwin, AB]

There's no money attached to this specific proposal. Let's be clear where credit is due for the work on this proposal. It's not my work. It's Senator Housakos and Senator Boehm's, and then the Senate committee who did great work at making some of the modifications that Don talked about.

In terms of the cost, the cost of the programs across the country are largely borne by the provinces. For a national autism strategy, the cost of a strategy relative to the cost of delivering those programs, is very minimal.

What success looks like to me is governments across the country—and not just provincial governments, as there are decisions made by municipalities and police forces and a lot of people in this country who need better evidence to be able to make those decisions—having the strongest evidence base in the world and making that known to decision-makers so they can make the best decisions in whatever area they're in, so we have a better understanding in the justice system, the mental health system and the education system.

I believe the number is still in the eighties for the percentage of people with autism not being employed. That is a complete loss to us as a country, a complete negative for us as a country. Everybody has a contribution to make.

I talk a lot at universities about moving from inclusion to contribution. Everyone has a contribution to make and we as a country are not enabling that because we're not taking the steps we need to take. That's what success looks like.

[Bob Zimmer, Conservative, Prince George—Peace River—Northern Rockies, BC]

I applaud you for your efforts and I know you'll get it done. You put your shoulder to the wheel and it's been for however many years and I hope you arrive soon at your goal. Thanks, Mike.

[The Chair, Liberal, Sean Casey]

Thank you, Mr. Zimmer.

Mr. van Koeverden, please, for five minutes.

[Adam van Koeverden, Liberal, Milton, ON]

Thank you, Mr. Chair.

Welcome back, Mike. It's nice to have you at HESA, as always. Thank you for your leadership on this and other files as well.

We've been friends since before I ever got involved in politics and despite our small political differences, I don't know if I've ever said this in public or on the record before, but you've always been extremely encouraging. When I called you and told you that I was considering running, you encouraged me to. Knowing that I wouldn't be running with blue signs on lawns, you still encouraged me. I want to thank you for that.

The reason I called you back then was to talk about autism. I'm on your fundraising email list—not your partisan ones, but the ones that I get for the organized fundraising you do with Jaden. I've learned a lot through that and from you, including once about what “people first” terminology was all about and where we're at now, which is a little bit different from that. I really welcome that, so thank you for bringing me along and helping me learn a little bit more.

The other person in my life whom I've learned a lot from, and there are a couple—and we've talked about our speech language pathologist partners, Don and I—is Emilie. She is doing a Ph.D. on literacy and was engaged at a school board level as a speech language pathologist assessing the needs of kids with a lot of diverse needs. One of the main ones she was working on was autism. She helped me understand more fully that it's a spectrum, as has been described today. There are a lot of diverse needs within the autism community.

The other person who helped me realize that was a guy named Andrew Sabino, who's a good friend of mine in Milton. He has somewhat of a superpower as an autistic individual: He remembers everything. He worked at No Frills until recently, and he remembered every SKU. He didn't have to look up anything. It was the same when he banged on doors with me; he wouldn't have to write anything down. He'd be like, “Okay, are you ready?”, and he'd say what happened at 15 doors in a row and exactly what response he got at each door because he doesn't forget a thing.

I want to ask you a little bit about the homogeneity of how some governments treat autism supports. Obviously, Jaden and Andrew have completely different needs when it comes to how they are going to live their lives. The underpinning aspect of that—and obviously that support will be provincial—according to Emilie and other practitioners I've spoken with is that the people being assessed, and I won't just say youth but autistic individuals, tend to get much better service when they come from wealthier families because it's expensive service. The cohort of individuals she and a lot of researchers are most worried about is autistic youth who are in families from a socio-economic background that not going to be able to afford that $70,000 worth of annual support.

I'd also like to know if the $15 million in budget 2021 to develop the strategy is adequate?

That's where I'll leave it with you.