Health Committee on Oct. 16th, 2012

[Richard Burelle]

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

[Massimo Pacetti, Liberal, Saint-Léonard—Saint-Michel, QC]

Again, to educate me, maybe, Senator Munson, you can answer the question.

If we already have World Autism Awareness Day, wouldn't that already be officially recognized by Canada?

[Jim Munson]

There has been a ministerial declaration, and that's a generous act on behalf of the minister, but that's a declaration from a government. What this does is set up a legal framework where Parliament, where you, as a member of Parliament, are speaking on behalf of Canadians; all of you parliamentarians are speaking on behalf of Canadians. Putting it into a legal framework...whatever government comes into power has to respect this day; 192 countries already do.

Remember, this only began in the United Nations in 2008. What it does here is empower every MP from every party to stand up and be counted. So it's about Parliament, which I think is extremely important.

To briefly answer your question, and I talked about this in the other questions, we can provide statistics for you to show you how different it is in different provinces. For example, in Nova Scotia it's wonderful what's going on. They have nine areas now in the province where you can go and get intensive behaviour treatment. Before, you went to Halifax. As I mentioned, in Alberta and other provinces the programs last longer. But at the end of the day, it's about us as Canadians, as parliamentarians. That sets a legal framework to recognize this in a legal bill.

[Massimo Pacetti, Liberal, Saint-Léonard—Saint-Michel, QC]

Let me challenge all of you. As members of Parliament we're asked almost on a daily basis to make a declaration or a statement on a certain day, and they're all valid causes. Tell me why World Autism Awareness Day has to be ranked up there?

[Jim Munson]

I think World Autism Awareness Day should rank with the bills that have already been passed by Parliament. You have to mean what you say, right? You can't just get up and say, I have to do this because this is a good little press release and my constituents will like it, and so on. You have to be behind it, and show some spunk behind what you do with the bills.

We've passed a national seniors day in Parliament. We have passed a day to increase awareness about epilepsy, a national flag day, a peacekeepers day, and a blood donor week. What do they do? And by the way, my wife would be very upset—mon épouse est acadienne. There's an act respecting a national Acadian day. That's a great thing in our family, for a Scot like me.

In essence, what we're doing with these things is we're saying to every one of these communities that we're there and we're going to do more than just stand up in one day. This is about carrying this message forward. The surveillance and monitoring you're talking about would be a unique opening for the federal government once they have enough data to say, okay, provinces, come on, let's sit in a room like this and analyze it together with those who understand the science and research. That'll be another step—and I'm not going away.

[The Chair, Conservative, Joy Smith]

Thank you very much.

Now we will go to Mr. Lake and Mr. Brown.

Mr. Lake has been a tremendous support to the autism initiative, and we're very familiar with his wonderful son Jaden.

Welcome to the committee, Mr. Lake.

Who would like to begin? Mr. Brown? Okay, thank you.

[Patrick Brown, Conservative, Barrie, ON]

Thank you, Madam Chair, and thank you, Senator Munson, for putting this proposal forward. I think anything that brings awareness to autism is a step in the right direction. Thank you for all the comments here today.

On Sunday in Barrie we had our annual autism walk, and that's why I said to those who attended that this brings awareness and attention to the issue. For the hundred families that came out, it does. It raises the flag and expresses an intention that we want to do more. We want to raise it, we want to talk about it, and we want to have it in the public dialogue.

On November 10 we're having our annual gala in Barrie for the same purpose, to fundraise and to raise awareness. I think this is something that would be appreciated by families and friends who have loved ones who have autism.

My question is actually for Jane. I know there is a patchwork, in a sense, a variety of different services, depending on where you live in Canada. I know I've had families in Barrie tell me that it's fundamentally different in Alberta, for example. Could you explain the breakdown or the division of provincial, federal, and territorial jurisdictions when it comes to services for those with autism?

[Dr. Jane Aubin]

Let me answer your question by really talking about CIHR's strategic research priorities, one of which is the strategy for patient-oriented research. This is a case where as a federal agency we're working in partnership with the provinces and territories to do exactly what's been commented upon, to bring together the knowledge from different parts of the country, to share collegially together, to work together, to harmonize, and to share best practices.

One of the particular initiatives under the strategy for patient-oriented research that I commented upon in my opening remarks is the community-based primary health care signature initiative. Within that initiative we're looking to roll out a national network to bring together the bits and pieces that exist in different provinces, to accelerate the sharing of what works within particular jurisdictions, and try to harmonize it at a national level. It's not only individual researchers, but working federally to convene the provincial policy-makers and health care professionals to deliver on best practices.

[Patrick Brown, Conservative, Barrie, ON]

I know Mr. Lake has a question.

[Mike Lake, Conservative, Edmonton—Mill Woods—Beaumont, AB]

I'll be quick. I probably won't get time to ask a question, though.

I want to start by thanking our colleagues from all parties. You guys have been amazing. I have a 16-year-old son with autism, as I think just about everybody in this room knows. He's like a three- or four-year-old in a 16-year-old's body. He comes here every year and gets a chance to meet all of the MPs, and he tries to raise awareness in his own way. I have to say the response from colleagues, regardless of party affiliation, has always been amazing. I thank you for that.

Jim, thank you for your tireless work on this. You and I may not always agree on exactly what the answer is, but we agree that what we want to do is help people with autism, not just autism—people who need help in a lot of areas. On this specific issue, I thank you for the work you've done.

Stakeholders, we've had many, many conversations over the years. Kathleen, thank you for the work you've done. We've had the opportunity to bring you together with the officials. We have the officials sitting here at the table to talk about some of the issues that we've been talking about today.

I know I'm going to get a chance in a few minutes to actually ask some questions, but I'm going to use my time right now to say thank you for the work you've done, and to let you know how important this is to my family.

I think, Marg, you made the point that if you meet one person with autism, you meet one person with autism. That's what it's like with Jaden. The challenges Jaden has aren't the same challenges that everybody else has. Hopefully over time we'll get a chance to meet more and more people. We'll see them in stores when we go to the store, we'll see them working in the library when we go to the library, or, in Jaden's case, as he participates in musical theatre, and he cooks, and does things that we would never have thought he'd be able to do. Thank you all for the role you play in helping our families get to that point.

[The Chair, Conservative, Joy Smith]

Thank you, Mr. Lake, for your very insightful support and all the help you've been to this particular initiative.

We'll now go to Dr. Sellah.

[Djaouida Sellah, NDP, Saint-Bruno—Saint-Hubert, QC]

Thank you, Madam Chair.

I also want to thank all of our witnesses today for shedding some light on this issue.

You described the situation here, in Ontario, but I can tell you that things are worse in Montérégie, the region where I was elected. In fact, 1 in 106 children there is said to have autism or PDD. But the figure for the rest of the country is 1 in 110. I also know that the wait time for a diagnostic assessment is 18 months, and that assessment is limited to children 0 to 5 years of age. That's a pretty small window when you consider treatment. After the age of 5, children attend regular schools like others their age, even though the schools aren't properly equipped to meet the needs of autistic students. Unfortunately, once they turn 18, they are left to their parents' devices or, without a family to care for them, they end up in a residential, long-term care centre.

Do you have an idea of where things stand in the rest of the country, as compared with my region?

[The Chair, Conservative, Joy Smith]

Who would like to take that question? Nathalie, would you like to?

[Dr. Nathalie Gendron, Assistant Director, Canadian Institutes of Health Research]

Every province in the country has problems in terms of services. One thing is crystal clear: the level of care being provided to children and adults with autism is not as advanced as it should be.

Nevertheless, we are here on behalf of the federal government, and its role is quite clear. We can support research efforts across the country, as Dr. Aubin mentioned. We can support initiatives that target epidemiology, as well as surveillance. Bear in mind that federal government efforts fall within our mandate and are aimed at supporting what the provinces are doing. Health care services are the province's domain, at the ministerial, hospital and community level.

The role of the research or surveillance work being done by the Public Health Agency of Canada is to support the provinces. That support is in the form of information provinces need to identify the most effective services and the best diagnostic tools to ensure children are looked after quickly following an autism diagnosis. As far as surveillance goes, the incidence and prevalence of the disorder do vary from one part of the country to another, as you pointed out. Given the complex nature of the disorder, a Canada-wide study focusing on prevalence and incidence is necessary to fully understand the range of children affected and their needs. That will result in an effective surveillance system.

All federal efforts are meant to support the provinces in their decision making, be it in terms of finances or health priorities. In addition, as Dr. Aubin mentioned, we are doing a lot of research at the community level. It is clear that most people who have an autistic family member or who are autistic themselves need community-based support. So that's the type of research we are working on.

I want to stress, however, that we cannot lose sight of our role or the need for close cooperation with the provinces, so they can come up with the best possible strategies based on the information we give them.

[Djaouida Sellah, NDP, Saint-Bruno—Saint-Hubert, QC]

I am quite familiar with the problems surrounding autism. As a health care professional myself, I am especially aware of the social repercussions. The bottom line is that parents are having to turn to private institutions for help and ending up penniless as a result. I want to know whether help is on the way for these parents or caregivers.

An answer to my question would be appreciated.

[The Chair, Conservative, Joy Smith]

Thank you so much, Dr. Sellah.

Now we'll complete our round of questions with Mr. Lake.

[Mike Lake, Conservative, Edmonton—Mill Woods—Beaumont, AB]

Thanks again.

The bill as presented is designed to increase awareness, and I just want to talk about that awareness. Notwithstanding the fact that we have a long way to go in terms of awareness, I think we can acknowledge that we've actually come a long way in terms of awareness. As a parent, certainly there's definitely more awareness I find in society than there was six or seven years ago—awareness of the challenges we face.

I would also say there is awareness in the sense of what we can do about it. I think an important part of this discussion is what we do in Canada to make lives better for all Canadians, because we're hearing of some significant challenges. I think one of the things we can agree on—we may not agree on it politically, and we have different ideas of how to get there—is that we want the situation for families across this country to be better tomorrow than it is today. To do that, we have to take a look at what's being done and what needs to be done.

When we take a look at what the federal government has done at this point, we've got some of the best researchers in the world—world-renowned researchers—leading the way. There's Steve Scherer, for example, in Toronto, and Lonnie Swaigenbaum. I think, Jim, you mentioned Susan Bryson. They're some of the world's best researchers. We've got the surveillance project under way. I think we can agree that was something that was overdue. But it's on track now and it's going to be an important part of understanding the puzzle that is autism in this country.

There are things like the opportunities fund, which doesn't just deal with people who have autism, but with vocational issues. We've increased funding for that opportunities fund to try to train people with different circumstances, different developmental challenges, so that they can have a better shot at getting jobs. We've introduced the RDSP, which, Jim, you mentioned. There are still significant challenges at the provincial level with treatment.

I think that's where I'm going to go with a question here, Marg. I'm going to come to you in a second to lay the context in your province.

In Ontario, there is 48% more money going to health care, plus 45% more funding going to social services, than six years ago, for example. What does the circumstance look like for families looking for treatment, looking for answers to their challenges health-wise, social services-wise, and education-wise in your province? Maybe describe some of those challenges. Have things been changing at all?

[The Chair, Conservative, Joy Smith]

Who would like to take that question?

Ms. Spoelstra, go ahead.

[Margaret Spoelstra]

There have been good things happening. In fact, we know what to do. I think that's the most important thing to say first off. We have access to the best information, the best research, and we have good clinicians who can help with services and supports in Ontario. The investments have been significant in the province, and we're grateful for that. Those are distributed across the nine regions. But what happens for families is they experience the system in pieces, and they have to constantly be cobbling together supports and services in a timely fashion for their kids when they need it.

I would say that the idea of seamless supports seems so elusive. The nature of autism is that it changes across the lifespan, so it's not a one-shot thing ever; it's multi-faceted. We need various ministries working together, so that the experience of families is not one where they're having to knock on 30 doors to get one answer for the situation they're facing today, as well as the situations that are going to continue to change across the lifespan. But we do need to invest more, because there are more kids.

As I was saying earlier in comments about those families in those early years, not receiving those services is so disheartening. When we say we want to support those caregivers, they need access to those services in a timely fashion, and they need a response to the nature of autism spectrum disorders as they are uniquely represented by each child, each adult. Then there's also caring for the caregiver. The parents bear an enormous burden in having to take the responsibility of being case managers, in addition to 20 other hats they wear on a given day.

I would also say they need additional supports to help them be families to their kids, to help them be effective in getting the services their children need, and in not having to pay out of pocket, which many families do. They go bankrupt in their efforts to get those services and supports and intervention strategies.

[Mike Lake, Conservative, Edmonton—Mill Woods—Beaumont, AB]

Is it fair to say...?

Time is up? Okay, no worries.

[The Chair, Conservative, Joy Smith]

I'm sorry, our time is up. I've given you a little extra time, actually.

I'm going to thank the witnesses so much for coming today.

We are going to suspend for three minutes. Then we will go into the clause-by-clause and then to committee business.

There will be a three-minute suspension.

[The Chair, Conservative, Joy Smith]

Could I reconvene the committee now and can we get this bill examined?

We are going to postpone the preamble, pursuant to Standing Order 75(1). We will postpone clause 1, which is the short title.

Does anyone want to speak on clause 2, or can we go straight to the question?

(Clause 2 agreed to)

Shall the title pass?

[Some hon. members]

Agreed.

[The Chair, Conservative, Joy Smith]

Shall I report the bill to the House?

[Some hon. members]

Agreed.