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

[The Chair, Conservative, Joy Smith]

Good morning, everybody. Welcome to the committee.

I'm Joy Smith, the chair. This is the subcommittee on Neurological Disease of the Standing Committee on Health. We are going to be continuing our study of autism today.

There are some witnesses who have been held up by the storm, and they will be coming in a moment. I think it's advisable to start now with the presentations.

We have with us Dennis Lendrum from Coffee Chat. That's an interesting acronym or title. I'm happy to have you here, Mr. Lendrum.

From the CanChild Centre for Childhood Disability Research, we have Dr. Peter Rosenbaum. Welcome back.

We have a couple of other people coming from the Centre d'Intervention et de Formation.... I'm not sure how to pronounce that in French.

[Warren Jason, Contributor, Programme socio-dynamique d'intégration par l'art, Pervasive Developmental Disorders, Autism Spectrum Disorders, Centre d'Intervention et de Formation Socioculturel International]

I can help you. I would say it's a centre for—

[The Chair, Conservative, Joy Smith]

Formation of—

[Warren Jason]

It's a training centre.

[The Chair, Conservative, Joy Smith]

Yes, it's an international centre. We have Mr. Warren Jason with us, and we have Mohamed Ghoul. Welcome. I'm happy to have you here.

From QuickStart, we have Suzanne Jacobson, who is the founder—it's Early Intervention for Autism. Welcome, Suzanne.

From the Public Health Agency, we have Kim Elmslie, who is the director general, and Anne-Marie Ugnat, the associate director.

We also have Dr. Laurent Mottron, who will be joining us shortly.

They have all been introduced, so we'll just go into their presentations when they come.

I would like to begin with Mr. Lendrum for a five-minute presentation.

[Dennis Lendrum, Coffee Chat, As an Individual]

Hi. I'm honoured to be here.

My name is Dennis Lendrum and I come from Espanola, Ontario. I'm the grandfather of a seven-year-old autistic child.

First of all, I'd like to thank the honourable Carol Hughes, the MP for Algoma--Manitoulin, for inviting me to speak today in the House of Commons. It's truly an honour.

I am a grandfather of five grandchildren, one of whom is seven years old. His name is Alex Bertrand. He was diagnosed five years ago as severely autistic and non-verbal. At that time, I didn't even know what the word “autism” meant.

I've worked in a pulp and paper mill in Espanola since 1981. I had two back surgeries and had to resign from that job in 1998. During that time, I've been a volunteer firefighter for 15 years. I'm also the volunteer president for the snowmobile club of the area.

I sit on a committee with the greater Sudbury Regional Police. I was part of a team that is working on creating a registry for wandering persons—that's not only for autistic wandering persons, but for anybody who may wander away from home. We have the attention of the provincial police. We're hoping this will soon become provincial and maybe even national.

Now all I ever speak about is autism. Social functions, meetings, media, all candidates meetings—wherever I can get in a word about autism, I'm going to do it. I've spoken to Carol Hughes many times, and I'm sure when she sees me coming she knows what I'm going to be talking about. We've met—

[The Chair, Conservative, Joy Smith]

Mr. Lendrum, you really have to be concise in your presentation, because we have a lot of presenters. I just want to make sure that you get in all the points that you think this committee needs to know. At the end of the time, I give latitude. But we need to get through all the witnesses and have all the questions.

[Dennis Lendrum]

My main part was the beginning; the latter part is just information for the committee.

[The Chair, Conservative, Joy Smith]

Good.

[Dennis Lendrum]

Five minutes and I'm ready to stop. Then we can chit-chat.

[The Chair, Conservative, Joy Smith]

Thank you.

[Dennis Lendrum]

Alex was first diagnosed a week before his second birthday, in October 2005. We were told to get him ready for 30 hours of IBI treatment, as he was priority number one. So our daughter and her husband worked on changing his sleeping habits and everything else in their life and their world to get him ready.

Then, in 2006, the list changed, and Alex went to the back of the list. Apparently, it went to a “first come, first served” basis.

We got a lot of information from the medical field on what direction we should be going, and everything pointed to the idea that we should get Alex into IBI treatment as soon as possible. So we started looking for instructor therapists and found a couple. We had a home program put together in Sudbury. The cost was nearly $70,000 to my daughter and her husband. It blew them away.

In September, I drove my daughter and my grandson to Toronto, and we met with Frank Klees and John Tory. We explained our story. We ended up meeting the Minister of Children and Youth Services, the Honourable Deb Matthews. Then, all of a sudden, my grandson got into the program.

[The Chair, Conservative, Joy Smith]

She actually appeared before our committee, Mr. Lendrum. Thank you.

[Dennis Lendrum]

Okay.

We got Alex into the 30-hour program. He went through this program. In January of last year he was taken out of the IBI program and dropped into regular school, which hasn't helped him at all.

Other parents couldn't have gotten their children to go to this program. Other parents haven't gotten their children to. I have a letter here from a reverend who was in my home community at the same time, and he got so frustrated with the system that he moved his entire practice to Manitoba. He sent me a letter for you to read. It's attached. It's the last two pages.

When Carol called me in November asking me if I'd speak, I was quite shocked. I spoke to a lot of my friends in Nova Scotia, Manitoba, and all over the place about autism and about what I was asked to do, and they all encouraged me to come here. That's why I'm here.

At the end of the day, most people I speak with want the Canada Health Act to adopt autism. That's the bottom line that we can see helping. Provincially, there are programs all over—in Nova Scotia or Manitoba—that are different. That shouldn't happen. All these children are Canadian.

I've met with Senator Jim Munson. He came to Espanola and spoke with me and several other parents. His statement was, “Pay now or pay later.” Is paying later an option? I am going to pass on. My daughter is going to pass on. What's going to happen to my grandson then? Those are the realities out there. So many parents are afraid of that happening.

I co-created a social group called Coffee Chat. I've created one in Espanola, and that's where parents just go to sit down once a month for an hour or an hour and a half and chit-chat with each other. Everybody is just so afraid of what's going to happen in the future.

As you can see, there's other information in the package I've passed out to the committee, but the big thing we want to see is a change in the Health Act.

[The Chair, Conservative, Joy Smith]

Thank you, Mr. Lendrum.

We're so grateful that Ms. Hughes called to have you on our committee. There will be a chance for questions and answers later, and you'll have lots of time then. I've given you a couple of extra minutes this morning.

Also, the committee actually doesn't have your presentation, because we have it in translation. We will make sure that everybody gets a copy. I've just gone through it here in front, and it's just excellent, very detailed.

So your presence here is very much appreciated.

And thank you, Ms. Hughes, for doing that.

We will now go to our next witness, Dr. Peter Rosenbaum, please.

[Dr. Peter Rosenbaum, Professor, Paediatrics and Canada Research Chair in Childhood Disability, Mentoring and Dissemination, McMaster University, CanChild Centre for Childhood Disability Research]

Thank you. It's a pleasure and an honour to be able to talk with you. My remarks will be rather broader than being just about autism, because I'm addressing the issue of neurological diseases as they affect children. Most of what I'll talk to you about is research-based.

I want to present five themes.

The first is that collectively, children's disabilities and neurological disabilities are many and varied. There are a lot of names and terms used, and these terms are often, if not always, descriptors rather than names of specific diseases. We know that there are about eight children in a hundred in Canada who have a neurodevelopmental disorder of some sort, including, obviously, autism, cerebral palsy, epilepsy, and so on. While it's important to make distinctions between conditions for a host of reasons, which I've outlined in the notes that are available, it's also very important to think collectively, in what is called a non-categorical way, about these conditions and what they have in common. The idea that has been argued for many years, with evidence to support it, is that these conditions have a lot in common. And the way we think about them and deal with them should recognize that reality.

The second theme that's really important is to recognize that children are developing beings. They're not small adults. Children are constantly in a state of becoming, and this is true whether or not they are neurologically intact. That's a very important issue when it comes to children with neurodisabilities, because we tend to think of them as people who need treatment and fixing. At the same time, whatever fixing we can do, we have to recognize that they are developing beings. And neurological impairments affect children's development, which is why we often refer to them as neurodevelopmental conditions.

Rehabilitation services of the sort offered to adults are not particularly relevant or applicable to children because of these differences. The way we think about children, the way we frame their disorders, is very important in conditioning what we do and how we do it. It's important to remember that children with neurodisabilities grow up to be adults with those conditions. We don't fix very much. We don't cure very much. The adult world—the world of adult services—does not serve children with developmental disabilities effectively. A major issue, to which Mr. Lendrum alluded, is what happens to children with neurodevelopmental disabilities as they grow up.

The third self-evident comment—in a way it's self-evident—is that children grow up in a context and an environment called “family”. Developmental and chronic health conditions affect families. It's estimated that one Canadian family in five is raising a child who has either a neurodevelopmental or a behavioural disability. There's very good Canadian research evidence of the negative physical and mental health toll these conditions take on parents. That's both clinical and epidemiological data. We know also that when services are developed and delivered to the family as the unit of interest, there is a big impact on the satisfaction parents experience, on their mental health, and on the amount of stress they experience, which is lower when services are family-centred.

The fourth theme is that we have new ways of thinking about childhood disability, moving beyond the biomedical concern of the diagnosis. Ten years ago, the World Health Organization published the International Classification of Functioning, Disability and Health, what's called the ICF. This is a framework for health that applies to everybody. It is a useful way to think about childhood disability. The idea is that whatever the impairment or condition, it may affect body structure and function, but it also has an impact on activity. It also has an impact on people's participation or their engagement in life. And contextual factors, of which family is the most important, environmental factors, and personal factors are hugely important in the way in which that condition affects people.

Therefore, it is terribly important that we recognize that interventions for children with neurodisabilities need to be directed at promoting function and activity in ways that are safe and effective, in order to enhance participation. It's also sadly the case that more therapy isn't necessarily better. At the end of the day, development and participation should always be the goals of services, to help parents help their children become adults who are as capable, confident, and independent as they can be.

Briefly, my fifth theme is that we need to continue to study these questions. I can tell you immodestly that Canadian research on childhood disability is the envy of the world. I'm very proud to be a Canadian who goes to other countries and hears about the work we do and how much regard there is for it.

We need to continue to study how best to help families, and of course their children. We need to assess the effectiveness of our interventions to adopt and promote those that work, and to stop doing those we know don't work based on good evidence. We need to support collaborative national research programs built on modern thinking about children, families, development, and a life course approach.

[The Chair, Conservative, Joy Smith]

Mr. Rosenbaum, I've given you a lot of time. Do you mind wrapping up, please?

[Dr. Peter Rosenbaum]

That's fine. I was finished at that point.

[The Chair, Conservative, Joy Smith]

Thank you so much.

We'll now go to Mr. Jason Warren, please.

[Warren Jason]

Hi.

This program is a socio-dynamic integration program through art. This new approach uses the rhythm of the African djembe as a medium for communication. From that building block, we communicate with those along the autistic spectrum.

What we're doing right now is to put in place different structures, starting from ordinary schools to psychiatric regional hospitals, implementing the program accompanied by research.

This new approach lowers aggression levels and lowers all the integration difficulties of the clientele we're touching. It's applicable to all types of handicaps among children or adults. What it does is to lower anxiety.

During the formation of trainees in these organizations or institutions, it brings a better atmosphere. This brings the participants into a context of creation. So when a participant is in the context of creation, this is always associated with emotion. With these two together, there's a “dynamic neuron” that's created, as I call it, which stores this information. This emotion and creation together stores this information in what we call memory. When we come back to that memory, it often becomes a permanent building block from which we can use the rhythm and every other tool to interact with that person.

From that first building block, the experience of creation brings a person to knowing that he or she can now communicate with the outside world. From that building block, we can put in different music, different words, and different rhythm. It's always within the rhythm basis: the communication is based on rhythm.

During the formation stages in institutions and hospitals, the cost of that formation is lowered because the results are, in the short term, very important. So the cost of the formation is very low compared with the fantastic results.

We're looking at getting government acceptance of this so that schools and different institutions can have this program available on demand.

That's about it for me.

[The Chair, Conservative, Joy Smith]

Thank you very much, Mr. Jason.

We'll now go on to QuickStart, with Suzanne Jacobson, please.

[Suzanne Jacobson, Founder, QuickStart - Early Intervention for Autism]

Thank you, Madam Chair. I welcome the opportunity to speak today before your subcommittee.

I am the grandmother of two young boys, Alex and Nathan, ages six and three. Both have been diagnosed with autism spectrum order, ASD. They are brothers.

My husband and I were privileged to be able to pay for private therapy for Alex while he waited the 10 months for the publicly funded assessment and diagnosis. As I learned the importance of early identification and intervention, I wanted to do something that could help all children, not just those children whose families could pay.

That led to the founding of QuickStart-Early Intervention for Autism in 2008. QuickStart is a non-profit Canadian charity.

QuickStart's goal is to find the most effective way to get immediate help to the children who are showing signs of autism. To this end, QuickStart has helped to establish the first Canadian pre-diagnosis clinic.

QuickStart also advocates for children with autism and their families. That is why I have asked to appear in front of your subcommittee today; first, to underline the health and economic burdens to the family; second, to emphasize the importance of early identification and intervention; and third, to highlight the encouraging results of an intensive early therapy for toddlers.

First is health and the economic burden. Our own personal family experience is that it is an enormous stress, on not only the family but the extended family. We have watched our daughter and son-in-law fight every step of the way for their children. We have seen the schedules they keep, with the numerous appointments, therapies, etc. It never ends. They are exhausted. My daughter has had to stop work, so there is the loss of her income.

On top of that, we have to come up with the funding for private therapy, which is easily $50,000-plus. We're talking after-tax dollars, and it's often the extended family who helps with this. Personally, I have cashed in all of my RRSPs to pay for my grandsons' therapies, and my husband and I are cashing in our other retirement investments so that our grandsons will have the best opportunity to develop.

I also hear from other parents. They call me. They're desperate. They are re-mortgaging. They are selling their homes. They're moving to other provinces to get better care.

One grandmother called me to tell me she continues to work, so she can pay for her grandson's therapy.

I'm here to tell you that we're the lucky ones. What if you don't have a home or investments to sell, or an extended family willing to help? Your child waits while you can do nothing, and valuable time is lost.

Second is the importance of early identification and early intervention, knowing what to do. I have a perfect example with my two grandsons.

Alexander was not identified right away. His GP wanted to take a wait and see approach, which is very common. We didn't know where else to take him to get help. Once he was flagged at 20 months of age, Alex waited a further 10 months for the assessment and diagnosis. Alex did not come to the top of the intensive behavioural intervention therapy, the publicly funded therapy here in Ontario, until he was 54 months of age. That's 34 months, almost three years from when he was first identified.

Nathan, his brother, is a different story. He took part and is still in a siblings research study with Dr. Lonnie Zweigenbaum in Toronto. At 15 months there were concerns raised. At 18 months he was showing some red flags for autism. He was diagnosed at 21 months.

Here I feel there is something that is very critical as well. Alex had regressed significantly by the time he started private therapy. Nathan started to receive private treatment as soon as he began to regress because we knew what to do with Nathan.

Alexander currently attends grade 1 with the help of a full-time aid. While Alex has many strengths, we are not sure at this time if he will be able to live independently.

Nathan, after 21 months of intensive therapy, has improved so much—and that's private intensive therapy—that he no longer qualifies for the IBI therapy. We are optimistic that he will live a full and independent life.

The third thing I'd like to talk about is an intensive therapy for toddlers. I would like to briefly highlight the encouraging results of an innovative new early intervention therapy for toddlers that's based on behaviour analysis, called the Early Start Denver model. This intensive early intervention approach by specialists and with the child's parents is suited to children under two and a half years of age. It has shown significant improvements in outcomes and cost effectiveness. Nathan's rapid progress has confirmed these results.

I believe his progress is due to a combination of these key factors: early identification and intervention, weekly speech therapy, and his intensive therapy with the Early Start Denver model. We're very fortunate to have someone trained in that here in Ottawa--the only person in Canada.

Madam Chair, I thank you for this opportunity to appear today. I thank your colleagues for bringing their attention and hope to this matter.

Thank you.

[The Chair, Conservative, Joy Smith]

I thank you, Ms. Jacobson. This committee has been very concerned about this issue. We find it very helpful to listen to all the input from all the members, and especially from people who have autism in their families, because it's a very real thing that needs to be addressed.

Thank you.

We'll now go to Ms. Elmslie.

Welcome.

[Kim Elmslie, Director General, Centre for Chronic Disease Prevention and Control, Health Promotion and Chronic Disease Prevention Branch, Public Health Agency of Canada]

Thank you very much, Madam Chair. My apologies for being a little late in arriving this morning. I was battling the traffic on the Queensway.

I'm very pleased to be here this morning from the Public Health Agency of Canada to provide you and the subcommittee members with an overview of the agency's work on surveillance of autism spectrum disorders.

I will start by briefly giving you an overview of health surveillance generally. Then I will focus on the development of the autism surveillance program.

As many of you will know, health surveillance is a core public health function, and it is a critical part of the work we do at the Public Health Agency of Canada. What is surveillance? Surveillance is the ongoing, systematic process of data collection; expert analysis and interpretation; and, most importantly, communication of the resulting information for public health action.

The information we use may include rates of a health condition; emerging trends over time; variations in the occurrence of a health condition according to specific populations or geography--where those populations live; information about risk and protective factors, and so on. There are many ways we do surveillance and many types of data that we collect.

With our surveillance information, governments, health care providers, public health practitioners, researchers, and Canadians can take action to prevent disease and promote health. The responses may be in the form of policy and program development, changes in clinical or public health practices, provision of advice and education to the public, or research. As you can see, there's a broad range of uses for the surveillance information we provide, and we are very careful to collect that information to meet the needs.

I will now focus on the development of a national autism spectrum disorder surveillance program. Autism spectrum disorder, as you know, is a group of neurodevelopmental conditions that typically occur before three years of age. These conditions are characterized by impaired verbal and non-verbal communication, impaired social interaction, and repetitive behaviours. Rates of autism spectrum disorders in Canada have been estimated at 6.5 per 1,000, based on studies by researchers such as Fombonne, and studies from the Senate Standing Committee on Social Affairs, Science and Technology, in their 2007 report.

The lack of complete and reliable epidemiologic data on autism spectrum disorders in Canada resulted in the identification of the need for a national surveillance system that would be equipped to fill information gaps and provide reliable information in three areas. First is the prevalence of autism spectrum disorders: how common are these disorders, and how do they differ in prevalence across the country? Second is to describe the population of children with autism spectrum disorders. Third is to understand changes in prevalence of these disorders over time.

We have a strong foundation in the agency and with our partners, on which we are building. The national epidemiologic database for the study of autism in Canada was established in 2001 and is coordinated by Queen's University. Researchers, clinicians, and government agencies in six regions of Canada are collaborating to better understand and estimate the prevalence of autism spectrum disorders.

A prerequisite for successful surveillance is standardization of case definitions and data collection. We want all of the people participating in surveillance to be collecting the same thing, according to the same definition, in the same way, so those data are reliable. We are working with Queen's University to develop and test surveillance methodologies for ASD based on their experience with the national epidemiologic database.

We have consulted with key stakeholders, including parents, caregivers, individuals with autism spectrum disorders, health and service providers, researchers and clinicians, and other persons affected by these conditions.

In brief, the priorities for a surveillance system of developmental disorders should include a valid case definition based upon scientific evidence, and a comprehensive selection of indicators that accurately describe the spectrum of disorders and enable an accurate estimation of the burden of illness in Canada.

In November, we attended the Geneva Centre for Autism's international symposium in Toronto, Autism 2010, and had an opportunity to hear first hand the needs of patients and families and from organizations working to provide services to children with developmental disorders such as autism. Through meeting with international counterparts and national experts, we learned first hand of the need for a coordinated national approach towards assessing the burden of disease related to the spectrum of autistic disorders in Canada.

At this point we're in the process of establishing our scientific advisory committee for the autism surveillance program. We will work with this committee to identify and confirm the measures or indicators we should be monitoring. This will be building on work we're already doing with Queen's University.

This process will define the specific data needs and our approach to data collection. We will benefit from the considerable depth of expertise on autism spectrum disorders that exists in Canada in research, clinical care, social services, and through organizations representing the needs of children and families.

This includes the work of the Canadian Autism Spectrum Disorders Alliance and Autism Speaks Canada. As you know, members of these organizations are committed to the establishment of a national autism surveillance program. We are working with these organizations to ensure the information from the surveillance program is communicated to stakeholders, that we receive their feedback, and that opportunities for ongoing dialogue are established.

To accelerate our efforts in establishing our surveillance program, we have dedicated a senior epidemiologist to manage the development of the program. The most important next step is the establishment of our scientific advisory or steering committee. This committee will begin its work early next year to identify and confirm the measures and indicators that will form the basis of our program. It will help us determine the best ways to collect these data. Our plan is to build upon the considerable depth of expertise that already exists in order to build a surveillance program that will accurately assess the burden of illness in Canada.

Thank you, Madam Chair. I would be happy to answer any questions from the committee.

[The Chair, Conservative, Joy Smith]

Thank you very much.

We've been waiting for Mr. Mottron, but we haven't heard from him. Perhaps he's having challenges with the weather today, as we've all had.

We'll now go into our first round of questions and answers.

We have Dr. Duncan first, but she may be doing this in sign language this morning, so I hope you all know sign language. She has a very sore throat.

Dr. Duncan.