Evidence of meeting #17 for Subcommittee on Neurological Disease in the 40th Parliament, 3rd Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was autism.
A recording is available from Parliament.
10:15 a.m.
Coffee Chat, As an Individual
That's just what it is.
Right now, on Friday, we were notified that Child Care Resources is done. Now what do I do?
10:15 a.m.
Full professor, Department of Psychiatry, Research Chair in Cognitive Neurosciences, Centre d'excellence en troubles envahissants du développement, Université de Montréal
The program varies from one province to the next, but most of the Canadian provinces are using the model that is based on the belief that intensive intervention, if applied extensively, can eliminate a child's need for services in the future.
So, the model that you feel is inadequate was actually chosen by people. The timeline varies depending on the province, but, in all cases, an extreme amount of care is provided, followed by a total lack of care. However, adolescents and adults need crisis management cells that are extremely flexible, versatile and available as needed. They need this all their lives.
Regardless of whether they are doing very well or very poorly, autistic people need assistance on and off throughout their lives, especially when it comes to work, housing, social duties, such as filling out paperwork, and so on. No type of intensive treatment will help those people dispense with the services as adults.
10:15 a.m.
Conservative
Mike Lake Conservative Edmonton—Mill Woods—Beaumont, AB
In my experience, no one advocates like parents or grandparents of kids with autism. You've already established that you have the ability to meet with some key decision-makers. Your local MPP would be where you would start. Carol is your MP, but you would want to meet with your local provincial official as well. The Minister of Children and Youth Services, the Minister of Education, the Minister of Health—it's important to connect with all three ministries. That's one of the challenges. The ball gets tossed from one to another and there seems to be a lack of understanding that this is a bigger picture. You can't compartmentalize it in one place or another.
Mr. Rosenbaum, if you were to have five minutes to talk to a provincial official, a decision-maker, and you were able to tell this person what works for kids with autism, what would you say? Mr. Mottron might want to jump in on this too.
10:15 a.m.
Professor, Paediatrics and Canada Research Chair in Childhood Disability, Mentoring and Dissemination, McMaster University, CanChild Centre for Childhood Disability Research
I'm not an expert in autism, but part of what I would say is what Dr. Mottron has said: the one-size-fits-all approach is not sensible and doesn't work. What we don't know is what works for whom. We haven't looked at this question in the way we have looked at cerebral palsy, and that's the kind of information we need. What I know works for sure is support for families, in addition to whatever interventions are being offered for children. That unequivocally matters.
10:15 a.m.
Conservative
The Chair Conservative Joy Smith
Thank you. I'm going to break a few rules here. I want to make sure Mrs. Hughes gets a chance.
Mrs. Hughes, would you like to take the floor now?
10:15 a.m.
NDP
Carol Hughes NDP Algoma—Manitoulin—Kapuskasing, ON
I'm glad that my colleague Mr. Lake asked that question. It was what I asked a while ago—what happens once they're out of IBI treatment? I agree that one size doesn't fit all. If a person who is handicapped needs a specific device, and if at the end of two years we take that device away, what happens to that person? This is basically what's happening with children with autism. Mr. Lendrum, you've worked over the years with politicians Shelley Martel and France Gelinas, and they've been tireless advocates on this issue.
I'm sure there is some respite care for children with autism. I know I've had to deal with that in Elliot Lake. Most of my riding is rural and the services are almost nil in some of those areas. It's unfortunate that we see people move from province to province. We heard that last week as well.
Ms. Elmslie, is there a specific amount of money that's given to the province for autism?
10:20 a.m.
Director General, Centre for Chronic Disease Prevention and Control, Health Promotion and Chronic Disease Prevention Branch, Public Health Agency of Canada
No, there is not.
10:20 a.m.
NDP
Carol Hughes NDP Algoma—Manitoulin—Kapuskasing, ON
So it's just part of the funding envelope and they do as they please.
On that note, I know that Dr. Mottron was actually shaking his head a little while ago when you were talking about surveillance, and I think he had something to say on that.
10:20 a.m.
Full professor, Department of Psychiatry, Research Chair in Cognitive Neurosciences, Centre d'excellence en troubles envahissants du développement, Université de Montréal
Perhaps we shouldn't harbour too many illusions about the success rate of the monitoring. One of the best therapeutic studies, which was published in The Lancet, said that small variations in case definition methods doubled the prevalence.
Those involved in epidemiological studies on autism know that the current definition of phenotype is only slightly more specific than the definition of intellectual disability.
The fact that this category is terribly expansive, as a result of the criteria being insufficiently specific, creates something a false public health problem, since the figures quoted are misleading.
10:20 a.m.
Director General, Centre for Chronic Disease Prevention and Control, Health Promotion and Chronic Disease Prevention Branch, Public Health Agency of Canada
I just wanted to say that that's precisely why we are taking care, as we develop the case definition for the autism surveillance program, to ensure that it's scientifically sound and reliable and that we can in fact replicate and use those measures to get a better sense of the true prevalence of autism in the country. What we've heard loud and clear from stakeholders is that there's a huge information gap in Canada around autism prevalence and that this needs to be filled, but it needs to be done in a very scientific manner.
10:20 a.m.
Professor, Paediatrics and Canada Research Chair in Childhood Disability, Mentoring and Dissemination, McMaster University, CanChild Centre for Childhood Disability Research
I would just add that the same can be said for virtually all the other neurodevelopmental disabilities that affect children. We do not have precise numbers for anything in Canada. There are some numbers we could get, like how many children were born with Down's syndrome last year, because all children with Down's Syndrome have a chromosome anomaly and that is assessed in genetics laboratories. But we don't know the prevalence of epilepsy, or the prevalence of cerebral palsy, or the prevalence of autism, or the prevalence of Tourette's syndrome because we don't have systems to collect that and we don't have clear definitions, as has been said repeatedly.
10:20 a.m.
Conservative
10:20 a.m.
Founder, QuickStart - Early Intervention for Autism
Yes, please.
Ms. Hughes, I'd like to address the respite issue. My younger grandson has not received one cent for respite care at all. His older brother got in as one of the last children; he was diagnosed four years ago. Respite services that you can pay for are available in Ottawa. Some of them are at no cost, but they're typically for medically fragile children or children with multiple medical diagnoses, not just autism. As QuickStart, we are actually, in January, implementing a respite program where local hotels are donating weekends. Autism Ontario is donating gift certificates for meals and entertainment, and QuickStart will be providing some funding towards the cost of child care while the parent is away.
10:20 a.m.
NDP
Carol Hughes NDP Algoma—Manitoulin—Kapuskasing, ON
As I've mentioned, I needed to check into it because I remember that our office had to look into that for a family.
Do I still have a little bit of time?
10:20 a.m.
Conservative
The Chair Conservative Joy Smith
You don't, but really quickly if you want to, and then I'm going to go to Mr. Brown.
10:20 a.m.
NDP
Carol Hughes NDP Algoma—Manitoulin—Kapuskasing, ON
I was just going to ask Mr. Lendrum if he had anything else he wanted to add with respect to what he's heard here today, and to talk about, again, the frustration level with respect to being able to get some care.
10:20 a.m.
Coffee Chat, As an Individual
Again, when we talk about the Canada Health Act, I don't know what we're going to call it, but I just want, as a Canadian citizen, my grandson to get the same treatment anywhere in Canada, period. What we've got to call it or what program it's going to come out of, I don't know. But I've got representatives sitting here representing Canada, and I'm saying, let's do it. Call it what you like. Get it done.
Alex is seven years old; he's going to be eight next year.
10:25 a.m.
Conservative
December 14th, 2010 / 10:25 a.m.
Conservative
Patrick Brown Conservative Barrie, ON
Thank you, Madam Chair.
One thing I wanted to ask about that we've gone over in some of the previous hearings with neurological disorders, and I don't think we've paid significant focus to today, is that which is certainly in the federal domain, and that is research. One thing we talked about with previous groups was how difficult the application process was to apply for a CIHR grant, about the number of projects that are being left off the table. That was a common thread we heard, whether it was ALS, Alzheimer's, Parkinson's, or a variety of other groups that we've heard from.
I wanted to get your impressions on what you've heard about the CIHR process. And do you know if there is a fair amount of research that is being left off the table in terms of autism?
That's a general question for whoever may be best equipped to answer that.