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.
9:25 a.m.
Liberal
Kirsty Duncan Liberal Etobicoke North, ON
Thank you, Madam Chair.
Good morning, everybody, and thank you for coming.
9:25 a.m.
Liberal
Kirsty Duncan Liberal Etobicoke North, ON
Thank you to all the witnesses for your time, and to the families who fight so hard for their children and grandchildren. It is a fight, and as you say, if you're lucky enough to have the means to continue that fight.... So thank you all.
Dr. Rosenbaum, I really appreciated your five themes. I was wondering if you could table your wish list for each of those themes with this committee. I would appreciate that.
I'm also wondering if someone could take this on. I think the Senate report was a very good report, and it was comprehensive. I'd like to know our progress on that report. There were a number of recommendations. What has been completed, what's in progress, and what needs to be addressed?
9:25 a.m.
Professor, Paediatrics and Canada Research Chair in Childhood Disability, Mentoring and Dissemination, McMaster University, CanChild Centre for Childhood Disability Research
In three minutes?
9:25 a.m.
Liberal
9:25 a.m.
Professor, Paediatrics and Canada Research Chair in Childhood Disability, Mentoring and Dissemination, McMaster University, CanChild Centre for Childhood Disability Research
I think the main theme I would underscore is the one the other witnesses have commented on, particularly parents and grandparents. It is that we recognize that childhood disability affects families, and that services and policies reflect that reality.
I think a number of things can be done at the service level, including early intervention along the lines that Suzanne Jacobson described. I think we are too stuck. We doctors in particular are too stuck on making a diagnosis, as if that is necessary, when clearly children with disabilities present functional challenges that can be addressed in ways that are rarely specific to that condition. We need to change the paradigm enormously. So that's one comment about services and the way professionals think about them.
The second, as I mentioned a minute ago, is the importance of recognizing the context of children, which is family, and that services be provided to families rather than just to children.
The third is that I suspect there are ways in which national and provincial fiscal or tax policies and other financial policies can recognize the financial impacts on families, not just of having to pay for services that aren't easily available, but things like tax benefits and employment support for families who have either to change what they're doing, stop what they're doing, or miss opportunities for advancement because they are preoccupied with the well-being of their children.
With respect to research, clearly the wish list would include identification of childhood disability as a major issue in this country, to recognize the prevalence of these conditions, the impact of these conditions on children and on families, and on the reality that these children will become adults who become orphans in the adult world for a host of reasons.
The final comment I would make is that there is an enormous imperative for knowledge translation, which is to say to get the best available research to the people who need to know it. That includes families, service providers, policy-makers. We need to stop doing the things we know don't work in favour of the things we know do work.
9:30 a.m.
Liberal
Kirsty Duncan Liberal Etobicoke North, ON
Thank you.
Could you comment on the CanChild model, its value and scaleability versus lack of funding?
9:30 a.m.
Professor, Paediatrics and Canada Research Chair in Childhood Disability, Mentoring and Dissemination, McMaster University, CanChild Centre for Childhood Disability Research
CanChild was developed in 1989 as one of the Ontario government's health-system-linked research units. A small group of people were empowered to develop a five-year research plan in childhood disability, and we received infrastructure funding, which allowed us to hire and retain very skilled staff.
We still had to go out, and still do go out, to compete for research funds for specific studies, but this kind of platform, if you will, has allowed us to develop and maintain a very skilled group of people across a host of disciplines, across a number of centres in this country, in America, and in the Netherlands. Collaboratively, we're able to do things, including longitudinal studies, that simply are not possible to do when one has a two- or three-year grant and has to stop at that point.
9:30 a.m.
Liberal
Kirsty Duncan Liberal Etobicoke North, ON
Thank you.
I think there are two issues that we've yet to address, and I'll open this up to everyone. We know how hard families fight for child care. We know it becomes much more difficult for transition to adult care and then how few supports are available for adults. If someone wants to address that, and also the issue of respite care....
9:30 a.m.
Founder, QuickStart - Early Intervention for Autism
Yes, I am more familiar with Ontario, but I'd like to say that the special services at home that provide funding for respite care for families who have children with autism has had no funding available for the last three years, so there is no funding there at all.
I should have taken notes on what you asked me.
9:30 a.m.
Liberal
Kirsty Duncan Liberal Etobicoke North, ON
Respite care was one issue, and the availability of it, the funding of it. The other issue was on supports. Once children becomes adults, if they finish school, what is available to adults?
9:30 a.m.
Founder, QuickStart - Early Intervention for Autism
I just had a parent tell me that her son is transitioning from child to adult, and she said to me something to the effect that if you think the supports are sparse right now for you with your young grandchildren, wait until they become adults. There is nothing.
9:35 a.m.
Conservative
The Chair Conservative Joy Smith
I'm sorry. Our time is just about up, but Mr. Ghoul, you wanted to mention something.
9:35 a.m.
Mohamed Ghoul Intervenor, Trainer, Programme socio-dynamique d'intégration par l'art, Pervasive Developmental Disorders, Autism Spectrum Disorders, Centre d'Intervention et de Formation Socioculturel International
I would like to say something about services for adults. Our program was created in Rouyn-Noranda, in Abitibi-Témiscamingue, with the mission of developing services for adults. In Quebec, no programs are available for people over the age of 21. There isn't really a place that works on their readjustment or social integration. Our program was designed to offer these kinds of services. The program is set up in various environments, including schools, hospitals and other institutions. Our program helps the participants develop their concentration and increase their social participation.
I also have here a few videos of adult special education classes. I added these videos to the documents that I sent to you.
There is also the training program and the formalization of the method of intervention. The documents I gave to you today contain various letters sent by the heads of a number of institutions, including Dr. Lemay from the St. Justine hospital and the people from the Malartic psychiatric hospital.
We are having a lot of difficulty in introducing this program because the work we do touches on health, art, communication and education. Provincially, it's difficult for us to position ourselves so that a ministry will say that it will take responsibility for this recognized program. We've done some 5,000 hours of work that we can make available to committee members and guests.
9:35 a.m.
Conservative
December 14th, 2010 / 9:35 a.m.
Bloc
Luc Malo Bloc Verchères—Les Patriotes, QC
I would like to continue this discussion. You are telling us that it is difficult to classify the type of program or work that you are proposing. Is it clear to you that this is a treatment to find a cure for a disease?
9:35 a.m.
Intervenor, Trainer, Programme socio-dynamique d'intégration par l'art, Pervasive Developmental Disorders, Autism Spectrum Disorders, Centre d'Intervention et de Formation Socioculturel International
We are trying to find a solution to the integration difficulties any person living with this type of problem has. It involves incorporating all the possible models into society, schools and community associations so that society becomes a stakeholder in this development.
But our teams on the ground have observed that the communication interfaces between the various school, community and institutional environments are practically non-existent. Each environment is trying to develop and maintain its own things. Our program became an answer to this lack of communication between these environments. In particular, the program made it possible to develop interactions and life plans. We will soon be leaving to go and work at an artists' residence for autistic adults in Paris and Orléans. We are going to Tunisia. We will document this experience, and we hope to open a training centre next fall to train caseworkers in autism and autism spectrum disorders and, more broadly, in mental health.
So we have various training modules. We are managing to get into the environments so that these people can integrate into society. Art and culture become a great way to encourage social development in both children and adults. Our intervention model makes it possible to connect with people who do not have any access to communication. The videos that I am leaving for you show this and are verifiable.
9:35 a.m.
Intervenor, Trainer, Programme socio-dynamique d'intégration par l'art, Pervasive Developmental Disorders, Autism Spectrum Disorders, Centre d'Intervention et de Formation Socioculturel International
No, I'm not a doctor; I don't take care of people like that. Instead, the treatment has an interpersonal and social integration focus. I think that this goes back to what the professor said earlier, that we need to change the way we think and live.
Social status is not important in our workshops. People come with their baggage and their backgrounds. It's the same thing for an autistic person, a person with autism spectrum disorder, or anything else. It's filmed and analyzed.
Here are the graphs that I left for you and that show the participation and concentration curve for each individual. Each colour represents an individual. From this graph, we can make pairings to put together groups that we would not think to put together. The idea is not to force the relationship, but to let it come together.
We work with participants who have some level of anxiety. We are managing to control that level.
We have also developed terms. An SO is a social opportunity, an SP is a social photo. An SS is a social stagnation. We are observing these three models, which help us create a profile for the person. One thing that is very important is working with the families. The families have access to the videos. Parents see me working with their child. Sometimes they aren't at all happy with what I'm doing, but they can see it.
It's a process of artistic creation. As a result, we don't put the authority of parents or doctors in jeopardy. It's a cultural process, a neutral place that allows freedom of expression. Thanks to that, so far the work we've done has been very good. We will also give the training in Paris and Tunisia. People already want this program. We would like to establish it in Abitibi-Témiscamingue. Our partners are well-established. We need support to be able to take care of the research and development side of things. We have five or six possible training locations for various clients, for various participants, school settings, institutional settings and community organizations.
9:40 a.m.
Bloc
Luc Malo Bloc Verchères—Les Patriotes, QC
Dr. Rosenbaum, what do you think about what Mr. Ghoul and Mr. Warren have said?
9:40 a.m.
Professor, Paediatrics and Canada Research Chair in Childhood Disability, Mentoring and Dissemination, McMaster University, CanChild Centre for Childhood Disability Research
I'll answer in English, because my French is not as fluent as my English.
I think what we're hearing about is very much a model of social integration, which presumably, if I understood correctly, is not diagnosis specific. It fits very much with some of the things I said earlier about the fact that most of our interventions are not specific to a diagnosis but are about functional well-being. I think this is extremely powerful. It addresses the social dimensions of the lives of people whose lives are complicated by virtue of a medical, in this case neurological, impairment.
It's also important to emphasize, once again, that people with childhood disabilities grow up with a different kind of experience of life--not better or worse, but different--than adults who acquire a disability, for whom our efforts are to rehabilitate them back to the state they were before. Really, the culture of the person with a developmental disability is a different life experience, and I think this is a very powerful and positive approach.
9:40 a.m.
Bloc
Luc Malo Bloc Verchères—Les Patriotes, QC
Mr. Ghoul, you said that there is still research that needs to be done. Can you go into more detail?
9:40 a.m.
Intervenor, Trainer, Programme socio-dynamique d'intégration par l'art, Pervasive Developmental Disorders, Autism Spectrum Disorders, Centre d'Intervention et de Formation Socioculturel International
Research needs to be done on training because it draws on everything related to interpersonal emotion. Not just anyone can necessarily take part in an artistic, cultural and creative workshop, be filmed and want to enter into a relationship simply for the sake of it. This approach is not part of current training, not at the college level or at the university level.
Right now, we are learning how to carry out an intervention and put a program in place. We don't necessarily use everything related to the interpersonal and the emotional as a tool. I would like to continue research on this so that we can be even better equipped and better informed on possible content and profiles so that we can be more specific. In our jargon, we would say that we are doing social surgery. It's really image by image. We can really see the growth and creative process. We are talking about a wave and, at the end of the workshop, after five or six weeks, there has already been an increase in the concentration of participants and amount of time they can look at each other. We start one-on-one with what we call the serious cases, the cases having difficulty, institutionalized individuals.