Subcommittee on Neurological Disease Committee on Dec. 14th, 2010

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

A good starting point to get across to parents all over the country is that every parent with a child with autism should take their child to meet their provincial elected official in their given province and take the time to have a conversation. If you can't describe it because your kid is displaying too many autistic tendencies, you will probably make your case better than you could have in the first place.

I'll let the chair move on.

[The Chair, Conservative, Joy Smith]

Thank you, Mr. Lake.

Now we're going into the second round, and as you know, it's a five-minute Q and A round. Our first person up would have been Dr. Duncan, but I'll put her in when she arrives back.

The next one up is you, Mr. Lake, so you have five more minutes.

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

Okay.

I'm going to go to Ms. Elmslie again, and I should thank you for the work you have done. I know we've met on several occasions now, and I've seen you interact with stakeholders on the issues, and your level of understanding is fantastic. I know those meetings have been very, very helpful, so thank you for that.

You talked about something being a Health Canada area. You're with the Public Health Agency of Canada. We also have the CIHR. Could you describe the interaction between those three federal agencies, what each is responsible for, maybe specifically as it might relate to autism?

[Kim Elmslie]

Sure, I'd be glad to.

As you would imagine, the Canadian Institutes of Health Research holds the federal mandate for ensuring that health research across the country is occurring and is supported in an effective way so that it is meeting the needs of Canadians. In particular, in the context of autism, CIHR is engaged in both basic scientific research as well as applied scientific research. So their research agenda is to elaborate on autism spectrum disorders, better understand how the health care system is responding, and also, of course, to support basic science to understand causes and treatments for autism. You'll find that at CIHR.

In the context of the Public Health Agency of Canada, our role is in the area of surveillance. So we are very focused on working with stakeholders to develop a world-class surveillance program for autism spectrum disorders.

From the perspective of Health Canada, Health Canada is concerned about the overall health policy and health care policy in the country and working with provinces and territories in that regard.

I'll just come back to the Public Health Agency of Canada for a moment, picking up on what Mr. Lake has just indicated with stakeholders—and by stakeholders, I put first and foremost the families and organizations that are representing families with children who have autism spectrum disorders. That interaction is of extreme importance to us. We will judge the value of our surveillance program on the feedback we receive from those who use that information in designing programs, in accessing programs, and in determining what the needs are going forward for families with autism spectrum disorders.

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

Dr. Rosenbaum.

[Dr. Peter Rosenbaum]

Let me make a very brief comment. Arguing by analogy with cerebral palsy, there is a surveillance system in Europe called SCPE, the Surveillance of Cerebral Palsy in Europe, which has been operating for more than 10 years and which involves several countries, and it involves some of the elements that Dr. Elmslie talked about. It is an excellent model for how this can be done.

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

All right.

In terms of the surveillance, when we did meet with stakeholders, there were two things that I took away from that. One was that generally I think the stakeholders realized there was more happening than they thought was happening. And then I thought the other officials in the room took away that there's still a lot more that needs to be done—

[Kim Elmslie]

Very well said.

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

—so there was a good balance there.

If you were to describe in terms that families can understand, how far away are we from a surveillance system that is actually tracking and working, as opposed to being explored? Second, what does that mean to families across this country?

[Kim Elmslie]

In terms of the timeframe for the development of the surveillance system, there are a couple of things that need to happen and that will happen very shortly in order for us to be more clear on how close we are, and that is the meeting of our scientific advisory committee, which is currently in the process of being finalized.

That committee will help us determine whether we have the case definition for surveillance correct. In order to do surveillance, you need to have a definition of what you're measuring, and that definition needs to be accepted by those who you will rely on to collect the data. So that will be our first real milestone in terms of moving on to the data collection in this system.

Early in the new year we expect to have our scientific committee in place. The first thing we'll bring to them is a discussion: Do we have the definition right? What are the gaps in this? With that definition, we will also then be talking to our stakeholders in the organizations such as Autism Speaks and the Canadian Autism Spectrum Disorders Alliance to ensure that with that definition we are actually going to be measuring what those stakeholders need.

[The Chair, Conservative, Joy Smith]

Thank you, Ms. Elmslie.

Dr. Duncan isn't here yet, so you're up earlier than expected, Monsieur Malo.

[Luc Malo, Bloc, Verchères—Les Patriotes, QC]

I would like to continue the conversation with you, Mr. Ghoul. You told us earlier that you wanted to conduct additional research to study the service you provide more in depth.You said that you had received, at some point, assistance from the Office des personnes handicapées du Québec to conduct a first study, but that further studies needed to be done.

Have you looked into different possibilities for obtaining additional funds in order to be able to carry out these studies?

[Mohamed Ghoul]

We would like to have a study with much more data. We conducted a study with a 10-person group. Although the study is documented, there is supporting video footage and it is done under supervision, we would really like to have a study with 100, 200 or 300 people.

As for the budgets, we have submitted an application to the Department of Education and the Department of Health. Unfortunately, as I was saying earlier, our application was rejected each time, ostensibly because we did not meet the criteria, since our study is based on too many different parameters.

Lately, through the Conférence régionale des élus, we have been working with MDEIE, which should—thought this is not yet final—fund the training program that is to begin next September. However, we're currently still unsure of what will happen.

Parents are asking for the study, the federation is behind us, as is Dr. Lemay of Hôpital Sainte-Justine. The Malartic regional psychiatric hospital wants to implement the project. The letters we received from them are attached to the document we've presented. Therefore, we have a group of present and future partners. There is also the neurological centre and Professor Catherine Barthélémy, who is very interested in expanding the method. This is a program that can easily be integrated into schools. I think that it's something that could be done in Canadian schools.

[Luc Malo, Bloc, Verchères—Les Patriotes, QC]

Thank you, Madam Chair.

[The Chair, Conservative, Joy Smith]

Thank you, Monsieur Malo.

We'll now go back to Mr. Lake.

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

Thank you, Madam Chair.

[The Chair, Conservative, Joy Smith]

You're really having your day here today, aren't you?

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

If I were in a different committee, I'd be panicking right now, because I'd be thinking about what I could ask. But I don't have a shortage of things to ask here.

I have a quick point, and then I'll do something a bit different.

Further to what I was saying about jurisdiction, I think one thing that's important to make clear when I say that treatment funding is provincial in nature is that families across the country are not getting the help they need. There's no question. There are some places where families are going into lotteries to determine whether they should get treatment or not, and that can't happen. That said, provinces need to individually be held to account to make better decisions and make autism funding more of a priority. The federal government today is transferring more money to the provinces for health care, social services, and education than at any time in Canadian history. So as a parent of a child with autism, I'll just say that the provinces need to make autism more of a priority.

I'm going to do something a bit unusual. I went over and gave Mr. Lendrum a heads up that I was going to do this.

[The Chair, Conservative, Joy Smith]

Yes, that was highly unusual, actually, Mr. Lake. I was going to interrupt you, but you looked too engaged.

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

Yes, I thought you might have thought that.

What I wanted to do was give him an opportunity to ask a question. There are some experts at the table, and as parents, there are so many questions we have. I wanted to give Mr. Lendrum an opportunity if he has any questions to ask them.

[Dennis Lendrum]

Yes. Right now my grandson is seven years old and he's just been put into school. He's been with CCR, Child Care Resources, since he was about two years old, in their program. Now he's out at the IBI program, and on Friday we were notified that he no longer has any ties with Child Care Resources.

He's seven years old. He's autistic. What am I supposed to do? Just let him go? Where are the services? He's Canadian. I have documentation from a reverend—

[The Chair, Conservative, Joy Smith]

Dr. Mottron, I think you want to answer that.

[Dr. Laurent Mottron]

Yes.

[Dennis Lendrum]

I have information from a reverend who lived in my community who couldn't get services in Ontario. He picked his family up--his church, the whole works--and moved out to Manitoba. He's really happy with the program out there.

[The Chair, Conservative, Joy Smith]

Being from Manitoba, I can understand that, Mr. Lendrum.