Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue 9 - Evidence
OTTAWA, Thursday, November 2, 2006
The Standing Senate Committee on Social Affairs, Science and Technology met this day at 10:45 a.m. to consider the inquiry on the issue of funding for the treatment of autism.
Senator Art Eggleton (Chairman) in the chair.
[English]
The Chairman: For those who watch this committee on television, I am not Michael Kirby. Senator Kirby has decided to take early retirement, and I have now become the chair of the committee. I am Senator Art Eggleton, from Toronto, Ontario.
I am pleased, though, that I still have the same vice-chair as Senator Kirby had, Senator Keon, who will be here shortly. He, Senator Kirby and the members of this committee, have done some outstanding work in the past, most recently on the mental health report, Out of the Shadows at Last, a report which I, as chair, want to continue to advance through the system of being adopted by the government.
Today, I also want to note the presence of Senator Jim Munson. Senator Munson put before the Senate a reference motion with respect to the matter that we will deal with today, and that is an inquiry into the issue of funding for the treatment of autism.
We will deal with autism over a number of meetings over the next few weeks, with the hope that we can complete our hearings in the fall. I will put a motion before the Senate today, giving us a bit more time to get the final report out.
We had been asked to deal with the final report by the end of November. That timeline is a little tight, to say the least, but the motion will be to give us until the end of May, which will give us a lot of latitude after the hearings to have deliberations and come to conclusions and recommendations.
Of course, we will deal with other issues, but our work program is still being worked on, and there will be more about that later.
Let me now begin on this morning's program, which has three witnesses, who will appear and start the information flow on autism. As this session is the first on the subject and some are more knowledgeable than others about it, an Autism 101 course or a primer might be helpful in the course of the testimony.
First, from Health Canada, we have Gigi Mandy; from the Canadian Institutes of Health Research, we have Dr. Rémi Quirion; and from Human Resources and Social Development Canada, Caroline Weber.
We will start with Gigi Mandy from Health Canada.
Gigi Mandy, Acting Director General of Intergovernmental Affairs Directorate, Health Canada: I am pleased to be with you today to discuss the federal role with respect to autism, particularly in the coverage of treatments for autism spectrum disorder, ASD.
First, the federal government is aware of the challenges faced by those with autism and their families and of the difficulties regarding support and provision of accessible programs and services. ASD is an important issue.
Although provincial and territorial governments have the primary responsibility for matters related to the administration and delivery of health care services, the federal government is also involved in ASD, for example, by funding research, providing access to on-line information, and through tax benefits and measures, amongst other things.
On the research side, the Canadian Institutes of Health Research is the government's lead agency responsible for funding university-based health research. My colleague from the Institute of Neurosciences, Mental Health and Addiction is here this morning to provide information on how that institute helps to support autism spectrum disorder research.
I also want to mention that the Public Health Agency of Canada is also involved in ASD research through the funding it provides to the Centres of Excellence for Children's Well-Being, particularly the centres for early childhood development and special needs. The Public Health Agency of Canada also funds the Canadian Health Network, which is a national, bilingual, Internet-based health information service that works in collaboration with expert associations and organizations to provide consumer-focused, on-line resources on various issues such as autism. If you have any questions on these activities, I would be pleased to ensure that you receive more information on them.
My colleague Caroline Weber, from Human Resources and Social Development Canada, will address in her presentation some of the tax measures for people with disabilities that are also available to families of children with autism.
As you know, the federal government provides funding to the provinces and territories in support of their health care systems through the Canada Health Transfer. This transfer is, of course, subject to the requirements of the Canada Health Act. The act establishes the criteria and conditions related to insured health services and extended health care services that the provinces and territories must meet to receive their full share of the transfer under the Canada Health Transfer.
The aim of the act is to ensure that all eligible residents of Canada have reasonable access to insured health services on a prepaid basis without direct charges at the point of service.
Senator Nancy Ruth: Do we have the document you are reading from? If so, what page are you on? I see a number of us trying to find it. I had the beginning of it on the document that looks like this.
Ms. Mandy: Yes: I have decided to skip the portions on the tax measures because Ms. Weber will address those.
Senator Nancy Ruth: You are on which page now?
Ms. Mandy: That is a good question, because I am working from a different version. I can find it for you. I am sorry, but that version does not match mine.
The Chairman: We sometimes receive documents, but witnesses are not obliged to follow the documentation. It does not always work that way. Carry on, please.
Ms. Mandy: I am sorry about that.
As I was saying, the aim of the Canada Health Act is to ensure that all eligible residents of Canada have reasonable access to insured health services on a prepaid basis and without direct point-of-service charges.
Under the comprehensiveness criterion of the act, provincial and territorial health plans must ensure coverage of all insured health care services, which are defined under the act as medically necessary, physician services, hospital services and surgical dental services requiring a hospital for their proper performance. The act does not list specific conditions for which treatment must be covered by provinces and territories, nor does it outline in any great detail what services are considered to be medically necessary. Rather, the act defines in general terms a minimum range of service or a basket of services that must be insured on a national basis in Canada. Again, services to be insured must meet several criteria. They must be medically necessary, provided by a physician or in a hospital, and, in addition, in the case of surgical dental services, must require the hospital for their proper performance.
As you know, services such as intensive behavioural therapy services for autism spectrum disorders are not covered by the Canada Health Act. However, there is nothing under the scope of the Canada Health Act that prevents provinces and territories from providing or funding these services if they wish to do so.
At the provincial and territorial level, children and adults with autism spectrum disorders have access to a wide range of services and benefits. With respect to the intensive behavioural therapies such as applied behaviour analysis, ABA, or intensive behavioural intervention, IBI, provinces and territories may provide funding through different approaches. Some have publicly funded programs. Others offer direct support to parents to help them defray the costs of purchasing these services. Others provide support to non-profit organizations, which, in turn, provide these services to parents and individuals with ASD. Again, because these services are not subject to the provisions of the Canada Health Act, provinces and territories can provide these services on their own terms and conditions.
Beyond these services and depending on where children with ASD live, they and their families may also have access to a variety of other supports. They can include supports through the educational system, such as supports to school boards for special programs for children with disabilities, which would also capture children with ASD. Many provinces have autism consultants to work with the schools and teachers to create a positive educational environment. Many high schools have special ASD units that address the special needs of these students while helping to integrate them into the general school population. There is also access to occupational and speech therapies. They provide individual learning plans for children with special needs. They provide guidance and counselling as well.
Under the social services rubric, services can include respite care for the parents and guardians of these children, recreational programs, summer day camps and crisis intervention supports to help families cope with the stress and crises that may arise in dealing with children with these problems.
Provinces and territories may also provide public assistance to adults with autism in a variety of areas, including post-secondary educational supports, vocational training, job placement services, workplace supports, social and life skills training, affordable housing registries, and home support services, et cetera.
I was asked to address the recent court cases related to autism. Recently, parents have resorted to the courts to try to obtain provincial funding for treatment of autism spectrum disorders. Families of these children successfully sued for public funding of behavioural therapy services in Alberta in 1996. The Alberta Court of Queen's Bench ordered the province to fund 90 per cent of the costs of behavioural therapy programs in this decision. In a Supreme Court of Canada case in 2004, known as the Auton decision, British Columbia was successful in appealing the lower court's orders to fund IBI services.
B.C. had appealed rulings that essentially said that their failure to fund intensive behavioural therapy for autistic children under their provincial health care plan, violated section 15 of the Charter, equality rights, and that such a violation could not be considered a reasonable limit under section 1.
The B.C. Court of Appeal decision raised significant legal and policy issues for governments, including the question of government's ability to make decisions about what services to fund publicly within their health and social programs, as well as the question of judicial encroachment on an area that had been traditionally within the purview of legislatures. Because of these issues, seven provincial Attorneys General, as well as the federal government, intervened before the Supreme Court in support of British Columbia.
On November 19, 2004, the Supreme Court allowed B.C.'s appeal and overturned the lower court decisions. In the unanimous decision, Chief Justice McLachlin held that choosing not to fund these services, which she noted were neither hospital nor physician services, was not discriminatory. She noted that neither the Canada Health Act nor the B.C. provincial health legislation promised to fund all medically required treatments and that the province's health insurance plan was ``by its very terms, a partial health plan.''
However, it was important in another aspect in that it was during the Auton legislation that the British Columbia government implemented their package of financial support of up to $20,000 per year per autistic child up to age 6 and then $6,000 per year for children aged 6 to 18.
Earlier this year, the Ontario Court of Appeal decision in the Wynberg case came down. At issue in this case was whether, having committed funding to these services through a special program for young children under the Ministry of Children and Youth Services, the Ontario government violated the rights of children by imposing a cut-off age of 6. The court found that the age cut-off did not in fact violate the rights of children with autism spectrum disorder and that it was a product of a difficulty policy choice.
Again, the court upheld the right of the provincial legislatureto make policy and funding decisions. Since the court decision, Ontario has implemented a wide range of new supportsfor children with autism and their families that includeinvesting an additional $8.6 million to provide IBI to more than 120 additional children with autism, regardless of their age; investing money in more training for teachers' assistants to work with students in the system; additional support services for children and youth with autism and their families, including parent support networks; training, resource materials and access to consultation with autism spectrum disorder consultants; and also additional funds to help youth with autism spectrum disorder make a successful transition to their teenage years through additional behavioural supports, crisis intervention and life skills counselling.
Ontario has reduced significantly the number of children waiting for assessment for this disorder.
Since the Auton decision there have been numerous calls for the federal government to amend the Canada Health Act to include services to treat persons suffering from autism spectrum disorders deemed medically necessary under provincial and territorial health insurance plans.
Referring to specific services in the Canada Health Act would be incompatible with its overall structure and intent. The Canada Health Act references insured services and medical necessity, but as I mentioned before, it does not define specific services for which treatments must be provided.
All provinces and territories have mechanisms in place to examine the insured status of health services. Provinces and territories consult with members of the medical profession to determine what services are medically necessary and should be covered under their plans. These consultations have proven in the past to be an effective way of ensuring that Canadians receive appropriate care.
I hope this broad overview of the federal role in the area of autism spectrum disorders and the provincial coverage has been helpful and I would like to thank the committee for their invitation to appear here today.
The Chairman: Thank you, Ms. Mandy. I should also note that here with Ms. Mandy is Serge Lafond, Acting Director of the Canada Health Act Division. He will be available to answer questions as well on behalf of Health Canada.
Rémi Quirion, Scientific Director, Institute of Neurosciences, Mental Health and Addiction, Canadian Institutes of Health Research: I know many of you from your work with Senator Kirby and Senator Keon on the mental health file. I was impressed by the committee and I hope that some of the recommendations in the report will be put in place sooner rather than later.
That being said, as you know, the Institute of Neurosciences, Mental Health and Addiction funds support for autism-related research in Canada. We do not do that in a vacuum. It is done in partnership with other CIHR institutes: The Institute of Human Development, Child and Youth Health, the Institute of Genetics, the Institute of Health Services and Policy Research; and the Institute of Population and Public Health. We do it also in partnership with other federal organizations: Health Canada and the Public Health Agency of Canada. We also do it in partnership with provinces, with funding bodies in provinces such as in Quebec with the Fonds de la recherche en santé du Québec and also with voluntary organizations in Canada and in the United States.
I think one of the key challenges in the field of autism and autism spectrum disorder is that there are a lot of unknowns. We know little about the disease process and what we know is not well understood. I would argue that research is critical to uncovering the mystery of autism spectrum disorder and to developing truly evidence-based standards for diagnosis and treatment.
Today, I will give a few examples of research funded by CIHR and partners, and share some thoughts and ideas as to the role of the federal government in that regard.
What autism-related research does CIHR fund in Canada? In 2005 and 2006, CIHR funded approximately $3.5 million in research focusing on autism in Canada. Since 2000 and the creation of CIHR, we have added about $15 million to the research funding. Funding goes to various university and teaching hospitals across the country.
I want to give a few examples. One group at McGill University, in partnership with University of Montreal, is headed by Eric Fombonne, the chair of child psychiatry. He and his team received a grant from CIHR to train the next generation of scientists. As I said, we have little evidence on the cause of the disease, but we also lack the proper expertise in the field.
These types of training programs are not the usual ones. When I did my Ph.D. in neuroscience at the University of Sherbrooke, I focused on one topic only. Now, in the training program that Dr. Fombonne and his colleagues have, students will work on the genetics of autism, while others work on IBI, and still others work on the social aspect. One unique feature is that they will talk to each other. Each student must spend two weeks every year with a family with an autistic child. It brings home the message. They not only work in autism, but they see real cases. I think this approach is extremely powerful. Hopefully, the next generation of experts in the field will have a more global understanding of disease and disease processes and treatments than my generation did.
This initiative is to the tune of about $2.9 million and it is in partnership with the Fonds de la recherche en santé du Québec and the U.S.-based voluntary organization, Autism Now.
Dr. Fombonne is starting a research program on autism in Aboriginal people.
Why will that be? We have no idea. We need to do more research and Dr. Fombonne is one of the world leaders in the field of autism research.
Another team at Queen's University led by Dr. Jeanette Holden has a team grant from CIHR; one is a training grant, a bit like that of Dr. Fombonne. Dr. Holden also has a grant for a multidisciplinary team that includes families, patients and scientists from across the country, from B.C. to the Maritimes, and also from the U.S.A. The team is trying to understand the cause, genetic background and the impact of society on the incidence of the disorder.
Another team at Queen's University led by Dr. Hélène Ouellette-Kuntz created a national epidemiological database for the study of autism in Canada, NEDSAC. The team is monitoring the occurrence of autism spectrum disorder among children under the age of 15 that live in various regions and cities across the country. Included are cities and regions in B.C., Alberta, Manitoba, southwestern Ontario, Prince Edward Island, Newfoundland and Labrador.
The team has a diagnostic clinic, and government departments and community agencies are participating in NEDSAC. The team's goal is to determine if autism spectrum disorder is really increasing. Is the incidence increasing over the past decade? Some data suggests yes, but we need more research to know whether it is indeed the case.
Another program is co-led by Dr. Steve Scherer at the Sick Children's Hospital, University of Toronto and Dr. Peter Szatmari at McMaster University. These researchers are two of the world leaders in the field of autism and autism spectrum disorder. They also work on evaluating the effectiveness of IBI in the treatment of various forms of autism spectrum disorder — again, one of the world's leading teams in the field.
Another group is based in Edmonton at the University of Alberta, in partnership with Bryan Kolb from the University of Lethbridge. The group studies interaction between genetic markers and environment — environment defined in the sense of social environment that could lead eventually to the development of autism spectrum disorder.
Dr. Susan Bryson at Dalhousie University in Halifax holds the Joan and Jack Craig chair in autism research at Dalhousie. She focuses on treatment and novel approaches to treatment of autism and autism spectrum disorder. Again, she is one of the world leaders in this field. Then have you
The team of Laurent Mottron at the University of Montreal focuses especially on highly functional autistic adults, especially those with Asperger syndrome. He involves these kinds of patients in his research project and one of them is doing a Ph.D. with Dr. Mottron at the moment.
There is a lot of excellence in research in the country, and some of the world leaders are here. These are only a few examples of projects that are helping us to understand the cause of the disease and hopefully come up with better treatment.
It is a start. We need to do more. Much is unknown regarding autism spectrum disorder, which is part of the challenge for families, caregivers, health and social service professionals and government. Too often still, a school of thought is based not truly on evidence. Then, there is a lot of pressure at various levels to focus on one aspect of treatment that has not been fully demonstrated to be effective. Research is key and we must be evidence-based so that we can put proper policy in place.
Federal role in autism research: Of course, research is a key federal role and the Canadian Institutes of Health Research is keen on being involved in supporting or adding more support in the field of autism research for Canada.
We cannot do it alone. Funding needs to be done in partnership with provinces and voluntary organizations. One way we do business is to get together to organize workshops with voluntary organizations to try to highlight the key concerns of families, caregivers, health care professionals and scientists in a given field. We did that with the Autism Society Canada five years ago, and we came up with various priorities. Maybe it is time to do it again. If that is the wish of the community we are willing to do so.
In closing, thank you again for all the work you do, and hopefully, at the end of the day, that work will help people suffering from autism in Canada.
Caroline Weber, Director General, Office for Disability Issues, Human Resources and Social Development Canada: Thank you for this opportunity to present to this committee. It always is an honour.
[Translation]
I would like to share with you a few statistics on persons with disabilities and some comments on the role of the federal government.
[English]
I will flip you through some statistics fairly quickly. We run, with the census, something called the Participation and Activity Limitation Survey, so we have data from 2001 on people with disabilities. I always find this information helpful and useful.
In 2001, 12.4 per cent of the population in Canada identified themselves as living with a limitation that could be called a disability; it was about 3.6 million Canadians at that time. They were comprised of 1.9 million working-age adults and about 181,000 children.
When we look at what kinds of disabilities people report, we see mostly mobility and pain, followed by things such as hearing, visual, psychological, learning, memory, speech, developmental. If I break these disabilities down into statistics for you, for Canadians 15 years and older, 72 per cent of the people with disabilities reported that they had mobility-related disabilities. Hearing accounted for 30 per cent, visual impairment for 17 per cent, and developmental disabilities, which would include autism and autism spectrum disorder, accounts for about 4 per cent of adult Canadians with disabilities.
I also want to note, though, that the reported rate for developmental disabilities among young people is much greater. We see 30 per cent of school-age children with disabilities in the age range of five to 14, self-identified by their families as having a developmental disability.
I have not brought a definition of autism for you. It is clear that autism is a disabling condition that interferes with communication and social interaction, but the degree of disability may change over time and varies, depending on many factors such as the pervasiveness of the condition, the stage of development, and the effectiveness of treatment, interventions or perhaps the environment.
Regarding the role of the Government of Canada insupporting people with disabilities, in 2004-05, the Government of Canada invested an estimated $7.6 billion in income support, tax measures and programs for people with disabilities.I use that number because it is hard for me to break down the 2005-06 numbers. We always wait a year so that we can figure out what all our programs are and add up the numbers. I can give you the most precise numbers for 2004-05.
In 2004-05, it was a 38 per cent increase over previous funding levels over approximately the last eight years.
The federal role with respect to disability generally has been largely the provision of income support through mechanisms such as the Canada Pension Plan Disability component, and the Veterans Affairs Canada disability pension program. Those two programs alone account for about 71 per cent of our spending in the federal government on disability issues.
Tax measures represent the next largest federal investment in income support for people with disabilities. We have measures such as the disability tax credit, the medical expense tax credit and the Child Disability Benefit.
In Budget 2006, the Government of Canada introduced new measures to help families deal with the costs of caring for family members with disabilities, including those with autism. Specifically, the annual Child Disability Benefit maximum was increased to $2,300, up from $2,044, effective as of July 2006.
The Child Disability Benefit eligibility was extended to medium- and high-income families who are responsible for caring for a child eligible for the disability tax credit, also effective July 2006. The maximum refundable medical expense supplement was increased to $1,000 from $767. In terms of providing disability related supports and services to persons with disabilities, the Government of Canada's primary role is providing block funding to the provinces and territories through the Canadian Social Transfer and the Canadian Health Transfer. In 2005-06, these transfers amounted to more than $15.5 billion.
It is important to note for the purposes of your study that the Government of Canada has no national strategy to address the treatment of autism. Jurisdictionally, provinces and territories are responsible for the delivery of supports and services for people with disabilities, including those with autism.
Within Human Resources and Social Development Canada, while we have no programs specifically targeted to the needs of individuals with autism, we have programs that help to advance knowledge in general and sometimes knowledge about autism. That knowledge also supports families and individuals living with these conditions.
Through the Social Development Partnerships Program — Disability component, which is an $11-million-per-year grants and contributions program, we provide funding to national, non-profit disability organizations that focus on cross-disability issues and that are actively engaged in representing the needs and concerns of Canadians with disabilities. This program along with the organizations it supports, aims to generate increased opportunities for people with disabilities to participate in their communities.
Through this funding, in part, we support the Autism Society Canada, which is an organization that works on a national basis to address issues and concerns common to the provincial and territorial autism societies that provide direct support to individuals and families affected by autism spectrum disorders. Since 1999, Autism Society Canada has received grant funding from us for $65,000 per year on an annual basis to help the organizations in the areas of governance, policy and program development, community outreach, organizational administration and management. The organization also received in 2003 an additional grant of $20,000 to help fund publication and dissemination of a white paper outlining a strategic plan for the development and implementation of an autism agenda.
Another recipient of funding through the Social Development Partnerships Program is the Miriam Foundation, which received $157,000 between 2002 and 2004 to create a learning centre for autism and developmental disability. This project resulted in creating a training centre to ensure best practices and service delivery, and to increase social inclusion, integration and participation of people with autism and developmental disabilities. Currently, the Miriam Foundation is receiving $37,570 to enhance communication and information-sharing amongst organizations, institutions and groups across the country.
Another project is interesting in light of Mr. Quirion's intersecting remarks on some uncertainty about effective treatment. Through the larger project of Social Development Partnerships, with $11 million in funding, without the disability components, money was provided to the Canadian Association of the Deaf to provide sign language as an aid to help children with communication disabilities to integrate better into society. The project examined how sign language could be a potential communication tool for both deaf and non-deaf children including children with autism. As a result of this research, researchers concluded that there was great potential and they produced dissemination materials to promote sign language as a possible way of improving communication and providing communication skills to autistic children who have difficulties communicating. I thought that was a neat project, which took a particular aspect of one group of people with disabilities and identified a solution, perhaps, for another group — using sign language as a communication skill for another group whose disability impairs their communication ability. I thought that was an innovative project.
We have a variety of other programs, such as the Opportunities Fund for Persons with Disabilities, which is designed to assist people with disabilities to prepare for, find and maintain employment. The program does not specifically target people with autism or autistic spectrum disorder but individuals with ASD have access to it. The Opportunities Fund eligibility is defined by self-identification so it requires no medical certificate. People can go to a service centre and say they have a disability and need assistance.
In addition, we also provide federal funding to the provinces to support programs and services eligible to people with disabilities through the Labour Market Agreements for Persons with Disabilities. Given that these programs and services are provincially determined, specific services differ across the country but, generally speaking, are accessible to people with disabilities.
I want to thank the committee for the invitation to appear today. I am pleased to answer any of your questions.
The Chairman: I thank all the witnesses for their presentations. I ask senators to enter into dialogue with you and ask their questions. We will begin with the senator who proposed this matter before the Senate, Senator Munson.
Senator Munson: Welcome to the committee. From my perspective, we are in a crisis with families who have autistic children. We have statistics from Statistics Canada that show one in 450 Canadians is autistic, and other statistics from the Autism Society Canada and others that show one in 190 young people are autistic. Autism is still a mystery. As you talk and we listen to statements here about medical research, which is all good, we will wake up tomorrow morning and find out there is another autistic child in this country.
From my perspective, there should be no borders when it comes to dealing with autism. There is not a level playing field in this country. There are different treatments for different people in different provinces. For example, we have a Canadian Diabetes Strategy, a Canadian Strategy for Cancer Control, a Federal Initiative on HIV/AIDS, Canada's Drug Strategy, a Canada Prenatal Nutrition Program, and a Community Action Program for Children. This brings me to the need of a national strategy. How that plays itself out, I do not know.
I want to ask the witnesses if they agree that there should be a national strategy led by the federal government, with the federal government bringing the provinces and territories together to sit down and hammer out a strategy. That leadership may be provided, perhaps, by an envelope of money from Health Canada specifically directed towards dealing with autism. I invite the witnesses in any order to respond.
Ms. Mandy: The federal government recognizes that a national strategy for autism is an important issue. However, we need to recognize that it is only one of many important issues. If you talk about developmental disorders, autism is only one of those disorders. Where do you draw the boundaries and how do you decide how wide to make a national strategy? Autism and children with autism are a well-organized group. Parents are vocal and they have had a lot of success in lobbying in court cases. However, is this success the case of the squeaky wheel getting the grease? Other developmental disorders that are not within the autism spectrum also pose the same types of difficulties for the children and their families. How do you define where you draw the boundaries?
Mr. Quirion: I agree that there is a crisis and that governments and families together must try to find a solution.
The numbers are significant: one in 400 and one in 200. Those figures are high, and it is true we do not have a national strategy.
If I put my mental health hat on for a few minutes, we still do not have a national strategy. The statistic there is one in five. That is dramatic.
Yes, we must do something, but what is the best way to accomplish this goal? Is it a national strategy? Is there some other way we could tackle issues? I am not sure. I am sure that other fields such as mental retardation and mental health altogether are in crisis mode.
Ms. Weber: At the Office for Disability Issues, we tend to look at these things from a generalized perspective. Therefore, we would not recommend a specific strategy on a specific disorder or condition. We would tend to recommend a more generalized strategy for a class of issues. Again, developmental disorders are still a small proportion of what we are seeing. There may be large increases.
Some of the definitions of the things we are talking about are recent. I do not know because I am not a researcher or a scientist, but I know that the definition for Asperger's syndrome, for example, according to the Diagnostic and Statistical Manual of Mental Disorders, DSM, was available only in 1995.
I do not know whether the increase that is cited is due to a rising incidence or an improved ability to diagnose and detect. Sometimes I think that many of these people we are identifying are people who used to be only different. Now we are figuring out more specifically how to categorize and classify them.
I know that graduates of the Massachusetts Institute of Technology, MIT, who intermarry tend to have a much higher incidence of children with autism than what appears to occur in the rest of the population.
I also know there are large differences between jurisdictions on many issues. An individual who needs a wheelchair and is in a particular province — I forget all the exact rules because I do not use a wheelchair, but our stakeholders try to inform me.
There is an example of a professor who wanted to go from Manitoba to Alberta for a sabbatical leave. The province of Manitoba claimed that they owned her wheelchair, and when she wanted to go away for one year only to Alberta, she was required to give back her wheelchair.
Wheelchairs are individualized pieces of equipment. Some provinces will buy you the wheelchair you want, some provinces will never buy you the wheelchair you want and other provinces will tell you that only if you are on social assistance will they buy you a wheelchair — and you can choose from one of three models when there are 200 models.
There are huge variations in everything we do with respect to people with disabilities across the country. Autism is a fine example of those variations.
Senator Munson: There is a great deal of confusion out there. You mention Alberta. We were recently in Alberta with the Standing Senate Committee on Human Rights.
In the autistic community, people leave their homes in different parts of the country thinking they will get better treatment if they go to Alberta. We discovered in Alberta that you must go through a lot of bells, whistles and hoops to receive that treatment.
I come back to the same issue about the need for a national strategy, and I hope, as a committee, we can come to a consensus.
In the United States, the Senate unanimously passed a combatting autism bill recently establishing $920 million towards autism treatment, education and research. How do we compare as a nation?
I notice you added up a lot of figures in terms of research, which I think is commendable. It is wonderful to see that, but when we add up what we are paying as a federal government to the provinces, do we compare?
Mr. Quirion: I do not have the figures, but usually with disorders related to the brain — there are many different ones — we are well below the average in the United States. Those disorders include autism, but they also include schizophrenia and depression.
The United States has had a national strategy for many years on mental health, and we do not. The investment they are making now in autism research and supporting services for autistic children are great. Maybe we can learn from that.
Senator Munson: I totally agree. Other than direct funding, you talked about tax breaks and current tax relief measures under the Income Tax Act. You talked about the medical expense tax credit and disability tax credit.
Can you explain whether families with autistic children can claim these tax relief measures? Can that be used towards ABA/IBI therapy?
Ms. Weber: I always try to defer to finance with respect to these types of inquiries. I can undertake to provide to you a whole list of tax credits for people with disabilities, and I could provide you with the eligibility definitions, if that is more helpful.
My understanding is that the answer, simply, is yes. To be sure and to give you the exact information, I am happy to provide that information to you.
Senator Pépin: You mentioned earlier that the tax rebate went from $700 to $1,000. How much do you think a tax rebate should be worth? When you know the cost of treatment, $1,000 is nothing.
Ms. Weber: You are absolutely right. I tried to give you precise numbers in terms of only three tax credits that had changed. Again, there are more.
There is a disability tax credit and there is the Child Disability Benefit, which is almost $200 per month up to $2,300. There is a long list, so I think it would be better for your purposes if I provided the whole list. There are eight different tax measures, and I can get you the eligibility requirements for them. I mentioned only three in my speaking points.
Senator Pépin: If someone has children suffering from dyslexia and attention deficit disorder, the government does not provide any sort of tax rebate for those disorders, and even the consultations and treatments cannot be paid for by the government. We have that in Quebec.
[Translation]
That is the current situation in Quebec. I do not want to compare the two illnesses, but the parents say that they must pay for consultations, even though these are not tax deductible.
Ms. Weber: I know the Quebec and federal tax systems are different, but I am not familiar with the specifics.
Senator Pépin: I understand.
[English]
Senator Callbeck: You mentioned all these tax credits. I want your opinion as to how effective they are in dealing with the financial situation of families that have a child with autism.
Ms. Weber: I have not done that analysis in terms of the costs. Autism in that extreme I suspect is costly. These tax credits probably do not go as far as the costs incurred.
The other thing to remember, of course, is that these benefits usually accrue to someone with an income. People in low income situations or on social assistance face a different reality.
With that said, there is a wide range of autistic spectrum disorders. I think we need a fair bit of analysis to figure out what people spend or what costs are incurred in terms of dealing with this disorder.
Senator Cochrane: There have been calls for the federal government to amend the Canada Health Act to provide services to treat persons suffering from autism spectrum disorders deemed medically necessary.
Where do tax breaks and the term ``medically necessary'' fit in? How can a family apply that term, ``medically necessary,'' to tax breaks? Will there be umpteen questions asked by the parents? Mr. Lafond, you are from Health Canada.
Mr. Lafond: Yes.
Senator Cochrane: The term ``medically necessary'' really bothers me. We must help the families.
Mr. Lafond: I agree with you. ``Medical necessity,'' either in the federal legislation or even in provincial legislation, is a term that is not always easy to define. You will not find good definitions of this term. We do not have one in the federal legislation. We generally defer to the provinces. The idea is that ``medical necessity'' should be defined not necessarily by a government or by a funder but through a process where not only the government is involved but the medical profession as well. This approach should be taken. The term is not a simple one to define. I agree with you that when it comes to specific services such as treatment for autism, it may be even more difficult to define because sometimes you deal with situations that do not seem to be clearly medical. There might be social issues involved.
Senator Cochrane: How will these parents receive the tax breaks?
Ms. Weber: Again, I am not from the Department of Finance so I cannot adequately answer your questions, but for some of these things, for example, medical expenses, one need only to show the prescription or the receipt for the materials or supplies received, which usually requires a prescription from a doctor.
I can supply you with the eligibility. ``Medical necessity'' in the context of the Canada Health Act is different from the way it is used in the context of the Income Tax Act.
Senator Cochrane: Can you supply us with those figures?
Ms. Weber: I can supply you with a chart of the tax benefits and the definitions of eligibility that exist under the Income Tax Act.
Senator Cochrane: As Senator Munson has specified, currently there is no national program in Canada for financing any treatment for autism, in particular, applied behavioural analysis, ABA, and intensive behavioural intervention, IBI, although most provinces and territories provide some funding for such therapy. I personally know of a family in B.C. with two little boys who have autism. They say their lives have changed as a result of the ABA.
While the province provides some funding — $20,000 — the family covers the rest of this expensive therapy.
Can you give us a sense of the annual cost associated with such therapies? Have you no idea?
Ms. Mandy: We have some idea but again, it depends on the needs of the child and the severity of the condition. Costs can easily range over $50,000 a year if the child receives, say, 40 hours a week of one-on-one intensive behavioural therapy of the type you described. Other than that, no, I cannot give you an idea.
The Chairman: The figure $60,000 has been advanced as a possible average.
Senator Cochrane: Can you tell us how provincial and territorial programs compare and differ?
Ms. Mandy: I cannot tell you in any great detail. We have compiled information in that regard. I do not have all the details at my fingertips, but I am happy to provide what we have and what we know about those programs.
Senator Cochrane: Can you provide information for each province?
Ms. Mandy: We have done research and we have compiled a document that lists what we know each province provides.
Senator Cochrane: That would be helpful.
Ms. Mandy: We are happy to provide that.
Senator Cochrane: Models are important. Does one province stand out as a model in the delivery of treatment and in the support services for autism? Do you have a model that we can tap into and say, yes, this works; this is an example?
Ms. Mandy: Provinces take different approaches. Some people might hold up the Province of Alberta as a model. As I said, the province was affected by a court decision back in 1996 that said the province had to fund these services. Because of that decision, Alberta may be considered to be further along that road in the development of programs. Whether their programs are the best programs or the most effective programs, I do not know.
Senator Cochrane: In my province, there has been a program for the past number of years whereby an individual comes in to help the child one on one and to do special things with that child, but I do not know the results of that program. It would be interesting to have that information.
Do you have any idea how many children have access to therapy in each provinces?
You do not.
How many children cannot get access? That is another concern that I have. Is there a move afoot to help the parents?
No one can answer that one.
The Chairman: The additional information the senator asked for is well warranted. Please provide whatever information you can to try to answer Senator Cochrane's questions.
Senator Callbeck: I was wondering about the waiting lists. Someone spoke here about them: how large they are and how one province differs from the others in this regard.
Is there a shortage of autism specialists to provide treatment? What about the training a person has to take to become an autism specialist? How long is it? Can you provide any information on that?
Mr. Quirion: Again, it is not easy to answer that question. There are no national guidelines, so it depends on each province. Often, to become a specialist, there is added training after a certain type of training. You work with a doctor and the doctor's team to learn the various treatments that the team focuses on. Again, there is the problem that not every expert agrees that all these treatments work effectively with an individual child. Depending on the child, some approaches may work better than others. There is still a lot of need for evidence-based data that, unfortunately, we do not have. We need to train more people, at least in Quebec.
Senator Callbeck: The training can be different in every province?
Mr. Quirion: Yes.
Senator Callbeck: There is no standard?
Mr. Quirion: In the province of Quebec, the McGill University Montreal network is not the same as the Quebec City network.
Senator Callbeck: How long does training take?
Mr. Quirion: In Montreal, it takes about a year, and I do not know how long it takes in other provinces.
Senator Callbeck: Is there a real shortage of these people in Canada?
Mr. Quirion: I think so. There is a shortage in Quebec and, I think, in other provinces as well.
[Translation]
Senator Champagne: Since I first learned that we would be studying this issue, I have been paying more attention to written material or to television reports. In recent weeks, I have seen four different reports on different ways of treating young persons afflicted with autism. Two of the reports originated in theUnited States and a third in Canada. A fourth was broadcast on TV5. Each of the four reports examined autism from a different perspective.
Regardless of the astronomical sums of money invested in research, clearly this is where the money needs to be invested in order to find a cure. There is no point having people work alone and not achieve any conclusive results. In your opinion, what needs to be done?
Mr. Quirion: I agree with you that we are facing a challenging situation. As Senator Munson was saying, many families with autistic children are suffering. Unfortunately, it is still much too early, in terms of research, to say that one approach is more effective than another for treating children with certain types of autism. Much more information is still needed.
[English]
There is no gold standard, like it or not. We need to find out more about what works with one type of child, compared with another. In the States, various powerful voluntary organizations, such as Cure Autism Now, Autism Speaks, and so on, are often started by a family member. These organizations believe in one way to treat children. Maybe the treatment works for their children, but not necessarily for others. That is a big challenge in the field. We do not have the gold standard. It is unfortunate, but that is the reality.
Senator Keon: Following that line of thinking, Mr. Quirion, in my other life I had a lot of experience with getting drugs and procedures listed for payment. It really boiled down to the need to have solid evidence that it was effective. The thing that troubles me about autism is that it is not at a stage of maturity, definition, and so forth, from a scientific point of view, where there is evidence that I know of, from an epidemiological point of view and from a clinical trial point of view, to say what is effective in various circumstances.
This comes back to the Canada Health Act. We need to be able to go the provinces and say: Yes, this is an essential service; and yes, Ontario, you must list this and you must pay for it.
The bottom line is: Where are we with this process right now? Mr. Lafond, perhaps you could lead off. Mr. Quirion, you have scientific knowledge available through your institute, so perhaps you could help us, too, and the others could please join in.
Mr. Lafond: That point is an important one. Before listing, a decision can be made that coverage will be provided, especially under the parameters of a national program or provincial program that is universal. We need solid evidence and a good understanding of the condition and what will happen and whether we can provide coverage for these services: whether the resources are available, the human resources are there and whether treatment plans can be implemented. That is one challenge the provinces face. As far as we are concerned, at the federal level we are not generally negotiating these services with the provinces. It has never been the intent or the approach of the Canada Health Act since 1984 to identify specific services and then go to the provinces and say: We feel now that these services should be covered. This decision needs to be made at the provincial level, again in conjunction with the stakeholders, the professionals, the medical doctors and other health professionals.
In this case, more research needs to be done to develop this evidence. The federal government is involved in trying to support this. I am not sure we are we are at the point where provinces can make that decision. I think they are providing services on their own terms and conditions. This is something we see often in different provinces. Eventually, this approach could lead to a more across-the-board approach.
Ms. Mandy: Of the provinces that provide services, they are equally split between ones providing services under the auspices of the ministry of health and other provincial ministries such as social services or family and children's services. It speaks to the nature of the services provided that, as I said, are neither physician nor hospital services. There are a lot of social skills training, educational supports and whatnot. Classifying these services as particular types of services is also difficult. Provinces have made different choices as to how and under what ministries they will provide services.
Mr. Quirion: To add a bit more to what I have said, as you mentioned, evidence is still lacking. We want to help and you want to help. Of course, it is traumatic on families who have an autistic child. Unfortunately, research often takes time. We need to do the research and to provide the evidence.
Over the next few months, we could have some kind of workshop like that. I am sure you will meet with many of these experts. They could include voluntary organizations in Canada and well-established experts from McGill University, from the University of Montreal and from McMaster University. We could bring these people together to brainstorm and discuss in detail the evidence that this behavioural approach works, under which conditions, what type of child this treatment works with and where it might do some harm. Some adults who suffer from autism believe that some treatments can do harm. Maybe it is rare, but it needs to be taken into consideration. Having that kind of feedback from better experts than I — that is, true experts who work with these children all the time — could help your deliberations.
[Translation]
Senator Pépin: I think we lack the proof to claim that certain treatments are effective or that certain ones are better suited to children in a particular age bracket. We encounter the same problem with adults. However, in those cases where certain treatments have been proven effective, have we done a cost analysis? Do we know how much money the government should be allocating for treatment and could some kind of balance be achieved?
Mr. Quirion: If, for instance, treatment ``A'' has been proven to be very effective under certain conditions and to give good results, then perhaps it would be easier to convince the provinces. It would be possible to evaluate the cost of treating a single child. For example, the cost per child could be $60,000. Ultimately, quality of life, both for the child and for his family, would be improved tremendously. Furthermore, savings would be achieved in terms of health care costs for that person down the road. It would be nice to have more convincing data, but at this time, we do not.
Senator Pépin: Is that because of a lack of perspective, funding or personnel?
Mr. Quirion: A somewhat similar situation exists in the field of mental health and with other neurological illnesses. We are only beginning to understand how the human brain works. The brain is an amazing machine, but we are just beginning to develop our knowledge of autism and related illnesses. We would like to move forward much faster. According to some epidemiological data, the incidence of autism seems to be on the rise. Something needs to be done, but we lack the data.
Senator Pépin: More federal and provincial government funding is needed. You mentioned in your presentation that genetics plays an important role in the equation. Research into this role is still in the very early stages. Earlier, one of your colleagues mentioned that two persons from the same university got married and had autistic children. Do we know enough about autism to say that more cases have been diagnosed in certain regions or cities? Or, do we still need to do more research?
Mr. Quirion: We need to be cautious because it is still early. A number of differences have been identified, but certain evidence suggests that the incidence is somewhat higher when both parents have a very high IQ. Why is that? We do not yet have the answer to that question.
Senator Pépin: So then, we need to continue providing you with the means to pursue your research.
[English]
Senator Munson: Mr. Quirion, I want to take you up on your offer. The workshop concept about which you spoke is a good idea. Will you organize it and bring all these people to Ottawa to brainstorm? It is that urgent.
Mr. Quirion: With your help and support, we could organize it. Certainly, it will involve voluntary organizations. The way we do business, it is usually not just us; it must include the base as well. I talked about this with a member of Autism Society Canada a month ago. I am sure they will be willing to associate with us.
The Chairman: It might be something useful for us to do. I am sure that we will hear from some of the people Mr. Quirion mentioned anyway. It might be useful to do it in that framework.
Senator Fairbairn: I am glad you are here today and that we are on television. People do watch. So many Canadians do not know much about this issue or find it difficult to understand.
The questioning today comes down to two major areas: Should the federal government make a decision about expanding treatment to all the children in this country who need it? If so, do you have any idea how much money that would cost?
The area involves medical professionals. This issue is incredibly difficult, not just for us, but for people in the medical profession as well. If we, as a country, all of us together, decided to institute a widespread national program, would we have the specialists, the therapists? Would we have enough personnel to make this possible?
How long would it take for therapists with a specialty to deal with this condition? How long would it take a person to go through whatever medical school might be required?
You are nodding your head vigorously.
Mr. Quirion: Senator Callbeck mentioned several things. There is much variability among provinces, medical schools and health care professionals in terms of exposure and training to recognize and to treat, or supervise treatment of, people suffering from autism. I do not think there is any national guideline in that regard. They are exposed to it, but there is probably still too little training in this area in medical schools. We need to think about that as well and ask an expert such as Eric Fombonne and others what it would take to ensure a baseline, at least of clinical knowledge, across the country for the health care professional. What would it take and what is the role of the federal government in that regard? That is something that needs to be discussed.
Maybe my colleagues have other answers.
Senator Fairbairn: Again, how long would it take to train a committed individual who wanted to treat autism? Would you need a doctorate? Would you need some kind of medical certificate and then build on it?
Mr. Quirion: Usually, it involves a health care professional. It does not need to be a medical doctor, necessarily. There will be a medical doctor on the team, but there could be other specialties. As to how long it takes, I give the example of a team in Montreal. It takes usually about a year, but the training is in depth. I am sure it will not take that long for every professional. It depends on how focused it will be. If the training program includes various research components, then of course it will take more time.
Senator Fairbairn: It will also take more money.
The Chairman: Ms. Mandy, from your response to a question from Senator Munson I got the impression that a national autism strategy was perhaps not warranted in and of itself without a broader category. Yet, we have national strategies for diabetes, cancer control, HIV/AIDS, prenatal nutrition, et cetera.
I want to get a clear understanding of why this disorder would not fall into a category that warrants a national strategy. To amplify that question further, particularly when people are dealing with tremendous emotional and financial challenges, this cost of $60,000, which is not being reimbursed by the provinces in sufficient amounts, and the kind of things you talked about today in terms of research and the lack of certain information: Is this not the kind of thing that would fit into national strategy development?
Ms. Mandy: I did not mean to suggest it would not. I was trying to suggest that it is always difficult to know where to draw the lines and how to go. When we looked at some things within Health Canada, various people asked why we focused on autism? What about pervasive developmental disorder? It does not fall within that spectrum, but often parents use similar types of treatments. For intensive behavioural intervention, they face the same types of funding challenges as parents of autism, so why look only at autism? Why not broaden it at least to developmental disorders?
Then if you look at developmental disorders, people ask what about all children with special needs? What if we have a child who has a need for dietary supplements or special equipment, et cetera? There are many competing demands out there and can we focus only on one group? That is all I was trying to suggest. These choices always need to be made. I do not suggest autism is not important, but that other families with similar needs, challenges and funding problems would also want similar treatment. Maybe we need to look at that as well.
The Chairman: In terms of the cost, because this issue is big, we have been considering a catastrophic drug treatment program. It is not the same category, but catastrophic costs are involved for a lot of people. Would that issue not warrant that kind of federal intervention, similar to the drug program that is proposed?
Ms. Weber: If you compare this disorder to diabetes and cancer, you are talking about a different scope. You are talking about a different proportion of the population. Diabetes and cancer affect lots of people: They are our number two and three killers. Autism is not on that scale, so it is different.
The other issue here is, as has been evident in Mr. Quirion's remarks and I tried to allude to it as well, we do not know a lot. In terms of the time it takes to accumulate knowledge and understanding, we have only recently begun to identify autistic spectrum disorders as a real category of disorders. All the interventions around treatment have suggested that we do not know how to treat this, which then interferes with what can be required, prescribed or even trained to, because we do not all agree; There is not a known solution to this. It is partly due to the huge variations in this spectrum disorder. It is probably due in part to the need to customize and tailor the responses.
The thing that stops us from embracing this wholeheartedly is partly the scope. If you wanted to generalize more, there are larger groups that you might be able to deal with as a class of issues. I know that approach is not always popular and not always successful because it is hard to attract specific attention for it.
Also, not much is known about what is effective or even whether we have an epidemic, again because of the definitional issues or our increasing ability to identify and even diagnose a particular situation.
The numbers are all over the map. You want to know a lot more about this issue, and about all the different kinds of things people are doing to address this series of problems, but I do not think we know the answer.
The Chairman: Given what you know and do not know, what do you think would be the one or two issues this committee could tackle that would help shed more light on this whole matter and to lead towards something useful and productive? I would like you all to respond to that.
Ms. Weber: As I sit back and listen to the discussion, I think that the call for research is the most pressing. That response is not always a popular one because it seems like more of a delay. Again, it has taken a long time to even get to the point where we can identify these spectrums. We do not know what the treatments are. People are strong advocates of particular treatments but there is huge variation out there. No treatment plan or guideline says, thou shalt do this when a child is diagnosed with autistic spectrum disorder, Asperger's syndrome or anything within that category.
Mr. Quirion: I will be biased. I agree there is need for more research and providing the evidence. At the end of the day, I think that since it is such a broad spectrum of disorder, it may be a little like hypertension. In 10 years' or 20 years' time we will look back and say, yes, this form of autism we treat with drug A, as we do with hypertension if it is related to kidney, the heart or blood vessels. We know little, so we need more research.
Another aspect that could be useful and provided to you fairly easily is better data on what each province in Canada is doing on that front. That data probably will be easy to obtain and useful to know.
Senator Munson: We did not know about different forms of diabetes and we did not know about different forms of cancer, but it did not stop the country from exploring new ways and means of treating these particular diseases. It did not stop the country from having a national will to come to some kind of solution and get things done.
The Chairman: Let me thank the four of you for coming today and for your contribution. This is the beginning of the study for us, and we look forward to receiving more data on some of the questions that were asked. We are interested in learning what the provinces are doing, and anything else you can provide us would be most helpful.
We will adjourn the public session, but I need time with committee members in camera to deal with future business items.
The committee continued in camera.