Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue 23 - Evidence - Morning Meeting
MONTREAL, Tuesday, June 21, 2005
The Standing Senate Committee on Social Affairs, Science and Technlogy met this day at 9 a.m. to examine issues concerning mental health and mental illness.
Senator Wilbert J. Keon (Deputy Chair) in the Chair.
[Translation]
The Deputy Chair: Good morning everyone, and welcome to Montreal.
[English]
We will begin this morning with Dr. Norman Hoffman, who is Director of Mental Health Services at McGill University. I think we may have all three presentations and then a question period, although if senators wish to ask a specific important question along the way, we can interrupt.
Dr. Norman Hoffman, Director, Mental Health Services, McGill University: I have been reading your report with great interest and I think that this study is a wonderful endeavour and a greatly needed one.
I have worked in the field of student mental health for the last 25 years, and I have also worked in the hospital system during that time. Over the last 20 years we have seen remarkable changes within the student mental health field. The demand for services has risen greatly across North America, and we are juggling to figure out both why the demand has increased so much, and what we can do about it.
The unfortunate aspect is that many services are way behind in being able to provide the kind of care that students need. The advantage we have is that all universities across Canada have the capability of providing full client-centred care. One thing has been interesting in watching the evolution of psychiatric care over the last number of years. We have been watching from the position of providing individualized client-centred care, while, from my observations of the hospital system and by speaking with colleagues who work with me, we have seen a growing gap between the kind of care that we are able to provide and the kind of care that is provided within the public system. That is a great concern.
This past year at our service, we treated close to 2,000 students. That amounts to about 8 per cent of the McGill student body. There has been some suggestion in the literature that the reason why student services have seen an increase in demand is because students are being treated earlier and better, and therefore are getting into universities.
From our experience, and from looking at our data, there is absolutely no truth to that. We are seeing almost no increase in the incidence of major psychiatric illness — I talk about schizophrenia, bipolar illness and severe major depression. What we have seen is a drastic increase in people with long-standing psychological problems. Over 50 per cent of the students we see have had a problem lasting at least two to four years. We see students who come to university, who have been suffering, often from the time of their early adolescence. It is essential for these students that we are able to provide them with complete care. We have been working hard at increasing our staff to provide the care that they need.
My advantage is that I do have a complete staff. We have tripled the size of our staff over the last 10 years. I now have 10 psychiatrists and five psychologists working for me. We have services far beyond what is available in the public system. If you want to see how a client-centred service runs and what can be done, come and look at us because we do it. We have to keep on increasing — I have hired two more psychiatrists for next year, but we are keeping up. We provide from short-term to long-term care. There are students we see for a few sessions, and students we see for three, four or five years on weekly care, with individualized treatment plans.
My concern, therefore, is not really what is happening within the university setting, because universities do have the resources to provide that kind of care, if they have the will. My concern is for what is happening to young people in our community. Why are we seeing so many troubled youth, and what can we do about it?
One thing that has been very disturbing, when you look at so many of the students we see, and often talking to educators in elementary schools, high schools and colleges, is that across the board there seems to be an increase in the number of disturbed children within our school systems. One thing that we see in our student population is that the relationships, from the time people are young, between children and strong mentoring figures is weakening; the relationship with parents and the relationship with extended families. The vast majority of people we see have weak relationships with grandparents, aunts and uncles.
A recent study looked at success in high school, and the factor that came out number one that contributes to success in high school is the number of family dinners any family has. Teachers in school systems are overwhelmed with behaviour problems: they do not have time to provide one-to-one mentorship to the students they see. Students are being signed up to all kinds of activities, but they do not develop good relationships.
In speaking with a good friend of mine, the Director of the Psychiatric Youth Service in Montreal, most of the students they see come from broken homes, they have no relationship with their parents and they are struggling on their own. At the same time, the power of peer groups has been increasing. Students come home from school, they go on MSN and they have 50 contacts, most of them superficial. People are not growing up with consistent strong mentoring relationships. Unless we do something to strengthen families and strengthen the ties with important mentoring figures, we will see a continued rise in psychological disturbances in our young people.
Another major concern I have is the way these issues are being addressed. There has been a strong tendency towards hasty diagnosis and simplistic symptom-based treatments over the last 10 years. The Diagnostic and Statistical Manual of Mental Disorders, DSM, the manual of descriptive diagnosis, is meant to be used as a guide. It says so right in the introduction. It is not meant to be applied in a cookbook fashion to individuals. However, that is exactly how it is being applied. We did a survey last year of McGill students; 15 per cent of first year students were on psychiatric medication. In surveys done in the United States, up to 30 per cent of students at some universities are on psychiatric medication. When we assessed these students, over 90 per cent were inappropriately diagnosed and inappropriately prescribed.
What is happening these days in the high schools? A kid's family is divorced, a kid breaks up with his girlfriend and he is feeling low. Adolescents tend to be moody. After a couple of weeks of feeling low, and not wanting to do their homework, they are brought to their GP, they are handed a prescription, and they are told they have a biochemical imbalance. Then, they come to us the minute they have any kind of psychological problem, which they do, because they have not dealt with the original problem. They say, ``My medication is not working anymore.'' Alternatively, the parent calls up and says, ``My kid needs his medication increased.'' We have students who call home, and the first question their parents ask is, ``Are you still taking your medication?''
Medication has its use, even though in a young adult and teen population, the studies have shown that medication is not particularly effective. However, this wholesale prescribing of antidepressant medication to youngsters as a solution for their problems is highly inappropriate, and it is leading to a major mental health disaster for our young. When we see them, not only do we have to deal with their problems, we have to convince them that there is not something fundamentally wrong neurologically with them.
I have a concern that this trend which started in the States is now moving into Canada, because we see more and more youngsters here who are given medication quickly without proper diagnosis. Studies have been done and certain news reports have been done; they go into a GP's office and they say, ``I feel depressed,'' and 15 minutes later they are out with a prescription.
We see a trend towards wanting to make these fast diagnoses. Screening programs such as depression screening may increase awareness of the problem of depression, but often all it does is support the idea that depression is a singular biological entity. This idea is highly promoted by the pharmaceutical industry, but has no support in the literature. Depressed moods are a complex problem. Twenty years ago, students would come to see us and they would say, ``I feel depressed, I feel down.'' Now they come in and say, ``I think I have depression.'' We say, ``What do you mean? How are you feeling? What is going on in your life?'' They answer, ``No, I have depression.'' People want fast answers and fast solutions, but they do not work.
One concern in reading the interim report is that I think it focuses too strongly on mental illness rather than on mental health. If we want to address these issues, we have to do a lot more on prevention. We have to attack the roots of the problem. I agree that our system needs to become more client-centred and more individualized, but dealing with the layers of bureaucracy, provincial jurisdiction and hospital jurisdiction is a problem.
I spoke with two colleagues yesterday who work with me and also at the hospital. They are thinking of leaving the hospital because they cannot deal with the bureaucracy anymore. The hospital is reorganizing to become more and more system-centred: intake programs and programs for specific diagnoses that are short-term, which tend to provide very few services apart from symptom-based ones. Much of it is driven by research coming out of the United States. The system in the United States is aimed primarily these days at symptom reduction. Most practitioners want to give simplistic short-term treatments to take care of the most immediate symptoms. They do not show any concern about the person's life and their long-term issues. We strongly need to resist this kind of orientation.
However, this orientation has been creeping more and more into the standard jargon of the way we see psychiatry. Most medical students these days, most psychiatric residents, come out of their training feeling that the DSM is the Bible, where their only goal is to make an Axis-1 diagnosis. The DSM is a good guide. It gives us the common language and the ability to do research, but it is not meant to be applied in a textbook fashion to each individual.
The impact of marketing by the pharmaceutical industry is also a major concern of mine. Every week, there are conferences at fancy restaurants put on by the pharmaceutical industry, where doctors go, and where they get the majority of their information these days.
I strongly suggest that we consider, in Canada, a ban on direct pharmaceutical- to-medical-profession marketing, and that we impose a fee or a tax on the pharmaceutical industry. We could set up a government board that will collect information, assess information, and give direct recommendations to doctors.
Over the last 10 years the two classes of drugs which have been most heavily marketed by the pharmaceutical industry are the Cox-2 inhibitors and the antidepressant medication. Look what is happening now with the Cox-2 inhibitors. They are good drugs, but there are many anti-inflammatories on the market that are just as good for the majority of people. The Cox-2 inhibitors are so heavily marketed that they have been over-prescribed and now we are seeing numerous health problems as a result.
The same thing is true of antidepressant medications. There is no research that shows that the modern antidepressants are any better than the old ones we used 20 or 30 years ago. They are no more efficacious. They may cost about 10 times as much. Especially in Canada, as we move towards a national drug plan, the cost of medication will be a major factor in our ability to deliver proper care.
However, the medical profession will tend to prescribe new drugs to everybody, regardless of whether an older drug may be just as effective. The older antidepressants are excellent but they are hardly ever prescribed today.
My major recommendation is that we provide increased mentorship to young people. I would like to see a Canada- wide system of outward-bound-type summer programs for disadvantaged youth. Let every disadvantaged youth get away for the summer in a special program that builds confidence, proper mentorship and continued contact with a mentor throughout the year. Let people grow up having a positive experience of adults, feeling well connected to adults and feeling that they have something to learn from people in our society who have a lot to give.
The committee could focus its recommendation on the mental illness system, and certainly there is a lot to be improved there. However, things could be done directly by the federal government to address and attack the issue of why people are growing up feeling so distraught.
[Translation]
Dr. Rémi Quirion, Scientific Director, Institutes of Neurosciences, Mental Health and Addiction, Douglas Research Centre: I was actually saying that sometimes it is easier for me to express myself in English because all of my studies were done outside of Canada. But I can proceed in both languages, if that is all right with you, in ``Frenglish,'' as is my wont.
I would like to commend the committee on the work and energy that went into your report over the last few years, as well as for the comprehensive consultations you held throughout Canada. Expectations are high with regard to the committee's report and we hope that in the future this report will have enough teeth to bring about tangible results for Canadians, those with mental illnesses and those with mental health problems.
You have received some information you can read on your flight back, including a copy of the annual report from the institute I have the pleasure of directing, the CIHR Institute of Neurosciences, Mental Health and Addiction.
An article by Ron Kessler from Harvard University, which was just published in the New England Journal of Medicine, Prevalence and Treatment of Mental Disorders, 1990 to 2003 may be somewhat dry reading, but it supports what Dr. Hoffman mentioned in terms of the prevalence of major mental illness not having really changed, be it depression, schizophrenia or anything else.
More people are in treatment, but perhaps the basic diagnosis is inadequate. More time needs to be spent on arriving at a proper diagnosis. There may be some people who will not consult for various reasons: stigma, as has been discussed, wait times in order to have access to clinical services, all of these reasons remain a major problem.
I would invite you to read the article and if you have any questions or suggestions, I would be pleased to discuss the matter with you.
We also have a slide presentation prepared by my colleagues and I at the Canadian Institutes of Health Research. I will not go into it in great detail, because it contains too much information. I would invite you to read it and once again, I would be very pleased to answer any questions you may have.
Perhaps we could start with some points regarding your interim report. On page 2, so if you take slide number 2, the Canadian Institute does indeed agree with what is stated in the chapter Comments on the Recommendations of the Special Study on Mental Illness, Mental Health and Addiction.
We agree that mental health research funding is insufficient in Canada, given the socioeconomic cost associated with these illnesses. Of course, the CIHR has been asking that its budget be increased to one billion dollars for quite a while now. We currently have a $700-million budget. We believe one billion dollars would put us in a better position to fulfil our mandate.
We strongly support the committee's desire to establish a national mental health agenda, and we of course support mental health research in Canada.
I think your timing is excellent. Quebec just tabled its mental health action plan. There are elements of the Quebec action plan which could, I believe, be of benefit to other provinces. It is not a panacea, but a reorganization of services, and we hope that at the end of the day, there will be a marked improvement in the services offered to people with mental illnesses, as well as a greater focus on prevention over the coming years.
We are quite pleased, and if we can help the committee in developing a national policy, we are prepared to do so.
Slides 4 and 5 deal with the sharing of knowledge and information. There is still a dearth of specific information in this country, regarding incidence, prevalence, treatments, treatment quality, and knowledge transfer. Very often, as my colleague stated, young doctors have but a few hours of psychiatric training.
They learn a little about DSM-IV categories, the DSM being like the Bible, as they say, but they do not really know how to recognize a person suffering from a mental illness. When someone shows up at their office for a first consultation in Trois-Rivières, they say: Gosh, what is this?
People may present with peripheral diseases, such as diabetes, cardiovascular illnesses, hypertension, et cetera. These people often have mental health and addiction problems as well. Often, young doctors and treatment teams are not that well equipped to recognize such problems.
I think knowledge transfer is very important. I will not go into this slide in greater detail. Slide 10 follows up on Senator Kirby's request. He attended the Institute of Neurosciences, Mental Health and Addictions' latest advisory committee meeting at McMaster University, in early May. At the time, he had asked how much was being invested by the institutes in Canada today, in the fields of mental health and addictions.
My colleague Richard Brière as well as other colleagues from the Canadian institutes considered all grants for fiscal year 2004-2005. On slide 10, you see the results of this study which demonstrate that currently funding stands at approximately $53 million in the fields of mental health and addiction. Senator Kirby had asked us to break this figure down amongst children and adolescents, adults, and seniors. There is a $13-million envelope for children.
For seniors, for various reasons, we decided not to include Alzheimer's, disease although we could have; because it is somewhere between the fields of neurology and psychiatry. We therefore decided to exclude it. If it were to be included, of course you would see a dramatic increase in the figures.
The Institute of Neurosciences, Mental Health and Addiction funds approximately 150 million dollars' worth of research, if you combine all institutes. If you were interested in knowing how much is invested by the Institute of Gender and Health, for instance, we could provide you with that information; the same applies to the Institute of Aboriginal Peoples' Health, etc.
One of the unique characteristics of our institution is the prevalence of partnerships with various groups, within and outside of the federal government, with provincial groups and with volunteer organizations. We cooperate with the Mood Disorders Society of Canada, with Phil Upshall, and others. We fund several workshops to encourage people from various fields to work together, to develop a research agenda in a specific area. These workshops cover broad issues, such as the genetic components of mental illness or a discussion with Sister Lena Mangalam. These workshops may also touch upon spirituality and mental illness, for instance.
There are examples of research funded by the institutes, but I will not elaborate on that. On slide 16, you have an update on some activities within the institutes. The Institute of Aboriginal Peoples' Health is carrying out a research program on the major problem of suicide within aboriginal communities.
To follow up on the comments made by my colleague a few moments ago, regarding the importance of early life events, and how to ensure the best possible start for young children and adolescents, how to minimize the incidence of mental illness, we have not yet received any submissions. We have just sent out the call to our scientific community and we hope they will come up with several original suggestions for prevention-based projects.
A great deal of work is being carried out on autism with American, English and Irish colleagues; this is a global effort meant to yield some results.
Mental health in the workplace remains a serious problem. Last week, we solicited bids on the following theme: mental health in the workplace, stress in the workplace, addictions, and workplace addictions. Obviously, this requires partnerships with the private sector.
If we want to succeed in the end, the private sector has to be involved. We hope the federal government, Canada's number one employer, will get involved as well, because we should look into federal government employees' mental health as well. Public servants experience a great deal of stress in the workplace.
In the future, we will also be looking into co-morbidity and clinical research. During our committee meeting, Senator Kirby mentioned training, planning for the new generation of clinical researchers in all disciplines, and not only doctors. Nurses and social workers are also part of the treatment teams grappling with various mental illnesses.
The institutes are not necessarily focused on mental health and addictions. We hope to be able to convince the CIHR to set aside part of its budgetary envelope for training, and clinical research carried out by mental health and mental illness specialists.
Various strategies have been mentioned in terms of improving the national infrastructure for clinical research as well funding for clinical research.
Obviously, we do ask researchers to take the time to carry out their research, but at the same time, they have a great deal of clinical work to do as well. We have to make sure there are adequate career plans in place for clinical research, otherwise young researchers will not be interested in this.
An important aspect of the clinical research plan, as you can see on slide 20, is knowledge transfer. This aspect is very important, because in the end, the research funded by the institutes must yield results. Mr. Kessler's document is excellent, really very good, but if it goes no further than the New England Journal of Medecine, we will have missed an opportunity.
When slide 21 was shown, Senator Kirby asked us: how can we work together in order to create a ten-year research agenda in the field of mental health, mental illness and addictions in Canada?
This was early May. We held some discussions about this over the last few weeks in the institute and came up with a concept which may not be all that original, and which may have already been used by the Gates Foundation in the United States, in other words, ``Grand Challenge,'' Unique Opportunities in research in mental health, mental illnesses and addictions.
To be consistent with your deadlines, and we know that you are preparing your final report, we would like to send out an open call to our community, towards the end of July, and the question would be: According to you, what is the greatest challenge in the area of mental health in Canada?
If you could only invest in one thing, what would it be? On page 22 you will find some of the strategies we suggested, in order to seek out the most innovative submissions. We are soliciting researchers and all community organizations, and not only people from the field of academia. It would be open to all.
We want brief submissions, two or three pages long, not necessarily focused on funding, because obviously there is never enough of it, but on how to solve the problem in the field of mental health. We want to hear what our community has to suggest, in the areas of prevention, quality of life for children, adolescents, seniors, and in the field of genetics.
The submissions will be assessed by an international committee composed of community representatives and researchers. On slide 23, under projected outcomes of our call, you see question marks after each suggestion or proposal. That is because we have not yet discussed them, and the work was done just recently, over the weekend.
To get a response from our community, we believe we need to use the carrot approach, otherwise they may be a bit reluctant to respond. So, perhaps between three and five of the best suggestions according to the national committee could at some point end up in some of your recommendations.
I think I have a fairly good idea of the outcomes. These suggestions could be included in some of your recommendations; if they could be there more explicitly, it would be very positive.
The institute is working on our second strategic plan for 2006-2010 and I hope some of our proposals will be seen as strategic initiatives from our institute, and there could be calls for tender for research in this field, including perhaps a carrot at the end for the best strategy and the best submission.
Obviously, these unique challenges and opportunities serve only as a catalyst, a beginning and not an end. We hope to reach out to our community in order to elicit good suggestions so that over the coming months and by the end of 2005, we can have a good idea of our research agenda for the next 10 years, in the field of mental health and addictions. Canada could then be in a good position strategically to meet the needs of Canadians as well as to be seen as a world leader in the fields of mental health, mental illnesses and addictions.
[English]
The Deputy Chairman: Before we turn to Sister Lena Mangalam, we should have some discussion of these two presentations. Then we could have a broader discussion after Sister Lena's presentation. However, these two presentations, in particular, delve heavily into the science. I think that will move the agenda along, and we probably should have discussion about that.
The first thing, Rémi, is I think there is a lot of wiggle room for the Canadian Institutes of Health Research, CIHR. Whether it was a commitment or an objective — some people say objectives are dreams with deadlines — the deadline has not been met. We are about halfway there in the overall funding of CIHR. The other half has to come, and I think there is wiggle room there. I think somebody as strategically important as you are should keep that in mind; there has to be room for growth there.
I spent last week at a tremendously stimulating global conference, which examined the scientific platform on which health care should grow for the next 10 years. The first thing was to establish the scientific platform that is here in 2005, and where it will be 10 years down the road. The second half of the think tank was about planning health care systems along these lines.
One thing that occurred to me during the establishment of the platform was that the big disease entities — cancer, heart disease, diabetes, mental illness, and AIDS — get a lot of attention. Of course in Africa, we have the other infectious diseases that require attention. However, there is a convergence of science in these big diseases, with the exception, I think, of mental illness. The convergence of sciences depends heavily on chemistry, new genetic research and nanotechnology, particularly a gene chip technology, but information technology in a totally different context than we normally think of. We think of information technology as health records and stuff, but I mean real information technology about the human genome as it will apply to illness and so forth. Of course, out of that comes bioengineering.
You are absolutely front and centre in this. What concerns me is that mental health research is very soft compared to the other four. As Dr. Hoffman spent a lot of time talking about the use and abuse of psychopharmacology, or whatever the appropriate term is — I am a heart surgeon — but can you foresee a move to this hard science the way the other big disciplines have moved and converged.
Dr. Quirion: That is a very broad question. That is a great challenge in terms of what I was talking about, the grand challenge for the next few years. Certainly, it is a key one.
It is not necessarily pleasant for some colleagues when I say that, but I think mental health, brain research in general, is still the last frontier. We know more than we knew 20 years ago, but if we compare it with cancer, or with cardiovascular disease, I think we are at the level that most cancer research and cardiovascular disease research was in the early 1960s. We are still a long way. We have made a lot of progress, but the brain is so much more complicated, and also mental well-being and interaction with the society, than other types — that is still very challenging.
However, I think we are making progress, and like the institute and other groups, we have tried to foster research that will include genetics, genomics and also the phenotypes. Of course, there is no one gene — it is a bit like hypertension in a sense. The end point is a bit easier to measure in hypertension: you take your blood pressure and that is it. For mood disorders, it is probably a very broad spectrum with a lot of different causes and, of course, a lot of social impact. I think it is important to genetic studies, and also phenotypic studies using brain imaging, or psychology in terms of the ranking.
One model we are discussing now in terms of platform, the eventual structure, will be, not bench to bedside, but in a case of mental health and addiction, maybe community to the lab. It is the other way around. You start with your community, and in terms of what you need there is very strong epidemiology, very strong information about the catchment area that you are dealing with. It is teamwork with, yes, psychiatrists, but also the social worker, the nurse, the community support, the non-governmental organization and all that. Then you identify family: There could be a bit of enrichment in one gene, and you backtrack with phenotypic studies, and then with animal studies, and using transgenic materials — so you feed that loop, but in a different way than the way we have tried to do over the past 25 years for mental health.
I think there is a bit more attraction to that, and there is interest in the next competition of the Canadian Foundation for Innovation, CFI, to have a network like that, a group here in Montreal at McGill, a group in Toronto, a group at McMaster — because there is a very strong epidemiology there — and maybe a group now that we are in discussion with in Alberta or B.C. Maybe we need to have a network like that. I am pushing for that, to push the community to think that way, because at the end of the day, I am concerned that CFI and CIHR will go with the clinical research call that we have here for infrastructure. Maybe mental health will not be as competitive because the other guys will have gotten their act together.
Already, there are national cancer-type networks, there is a cardiovascular network and there is an epilepsy network. We need to make sure that we are there as well, and that we are willing to work together. It is challenging because it is my strong belief that we need to involve the patient community and the family. That is challenging, but I think we need to do that. Otherwise we will make meagre progress over the next few years.
The Deputy Chairman: Before I turn this over to the panel, Dr. Hoffman, the chemical manipulation of the brain, as best I can express it — and I admit I am an absolute amateur when I talk about this — but you have deep concerns about the use and abuse of therapeutic agents, drugs. On the other hand, I have heard from several witnesses that it is better to have a child cope in school than drop out, and if it takes a pill to do that, give the child the pill.
Again, my concern is that an awful lot of the decision-making is on very soft data rather than hard chemical — and I will not repeat the list of tools, but it seems to me the tools are not being used enough, and I would like to hear what you have to say about that.
Dr. Hoffman: Again, I think your concerns about the scientific platform are very important. One reason why the information is so soft in the mental health field is in order to do research one has to define narrowly the population you are doing research on.
Let us say you are doing research on severe major depression in a young adult population. You have to make sure the people have that diagnosis and only that diagnosis. You have to know if there are two pathologies. You have to define very closely your population in order to do the research. When you treat people in the field, very few people fit into that narrow definition. You are doing research on a drug which will show — almost all the antidepressant drugs show some effect, but not a huge effect. You get 65 per cent, 70 per cent or 75 per cent reduction of 50 per cent of symptoms. You do not show a huge effect on a very narrowly defined population.
Then when you deal with a real person who does not fit that definition, does the research apply at all these conditions? How do you know when to give medication? We do give medication. I give medication to students fairly frequently, but only after extensive evaluation: after extensively looking at what is going on in their lives, what other things are contributing and what other things they may respond to. The issue is: how do we develop the research that shows how we should treat your typical person, not your research subject? There is a large difference in the mental health field between the two. Unless you are able to define things more closely, the information will always be soft.
I agree with my colleague here: One needs to start with the community and see what problems are out there, and how to break them down. I do not mean break them down simplistically. I am not saying we have to define the person as this problem and then simply treat them. We have to look at a broader range of the combined treatments that tend to work. What does the average person deal with, what are the problems the practitioners are seeing and what tends to respond better? We need to do more research in that area.
Senator Pépin: When you stress the importance of good relationships between youth, their parents, grandparents, and the family, I think this is very important. We wonder why so many youth are disturbed, and find out, as you stressed, that there are a lack of good relationships now.
Also, you speak about the percentage of students that you see at the university who are not well, and you said it may be 15 per cent. We know we need to identify them when they are very young. Also, we said that maybe the GP or whoever sees them when they are very young might not see it. First, I think we need better training for a medical doctor. Could you specify the minimum it will take to get a good education in that field, because I think it is important? I remember, as an old nurse, we used to do three months training at Saint-Jean-de-Dieu: It was mandatory. If we see the way they want to organize the mental health system, they say that more and more it will be the GP who will be the first person to welcome any patient, so they will need specific training. What do you think is the minimum?
Also, as Dr. Quirion mentioned, you say that students were getting the wrong medication. A previous presenter told us about the importance of having medication at an early age because they are able to cope and go to school, et cetera. I listened carefully to your presentation. Perhaps you could expand on that point.
Dr. Hoffman: There is a big difference between how we treat the most severe people who present in hospital, who fit clearly into major psychiatric diagnoses, and how we treat the average person who is distressed. The research applies to the most severe cases. If you have an extremely depressed child or adolescent who has gone through extensive evaluation, or someone with psychotic symptoms, the medication is effective and often extremely useful.
However, this effectiveness does not apply to the majority of children and adolescents who are distressed. You have to differentiate what population you are talking about. The people who work within a hospital setting, within an inpatient setting, see one population that is a small percentage of youngsters and youth who are troubled. However, the research does not tend to differentiate — and that gets back into training, and the kind of training we do.
Right now at McGill University Medical School, when students have a lecture on psychiatry, they are lectured on Axis I diagnoses. They are given a lecture on major depression and they are told, ``These are the symptoms, this is the neurology, and this is the treatment.'' When they talk about anxiety disorders, they are told, ``This is the symptom, this is the neurology and this is the medication you give.''
If we want a client-centred approach, we need to start with medical students, counselling students and psychologists to move away from a system where we are teaching the most simplistic cookbook method, and teach them a client- centred approach. If we do not start with the roots, we are not going to change the system.
Senator Pépin: I read the presentation of Mr. Philippe Couillard, Minister of Health and Social Services in Quebec, regarding the new system that he is trying to apply. Again, all patients will be directed to, let us say, one place such as the Centres locaux de services communautaires, CLSC, and it will be GPs, nurses and psychologists who will welcome them —
Dr. Hoffman: Yes, right.
Senator Pépin: — and decide where they should —
Dr. Hoffman: A large part of the problem is that doctors are trained in what we call the ``medical model.'' The medical model says you have a patient and you do an examination. From there you note certain symptoms, the symptoms imply a diagnosis, a diagnosis implies ideology and ideology implies prognosis and treatment. The DSM is not a medical-model diagnostic manual. Major depression does not exist; it is a description. It is not a disease entity but our doctors are taught that it is. Because this is the way they are trained, they will stick it into the medical model. They will say, ``You have major depression, I give you `X' treatment.'' The research shows medication and different kinds of therapy all have roughly the same results if you look at the research.
According to the HRGP, they are all the same, so you might as well give any of them, right? The easiest treatment is to give the prescription.
It is not what the research showed. The research showed that people are different and respond to different things. For one person medication may be most useful, and for another person cardiotherapy may be more useful. For another person, psychodynamic therapy may be more useful. We have to treat people individually. We have to train people, and ask what the minimum is. We need to start with the basics. We should start teaching about people, and not teaching the diagnoses. We should teach students that DSM is a guide and not a list of disease entities. Unless doctors, psychologists, counsellors and nurses understand that, the system is not going to change.
[Translation]
Senator Gill: Dr. Hoffman, you have an advantage in that your system is customized for McGill University clients; fortunate people like yourself in this country are, generally speaking, few and far between.
First, I would like to ask you why you find yourself in such a privileged position? And what results have you obtained because you have more human resources? That is my first question, and I would like to ask you another one later on.
[English]
Dr. Hoffman: We are in a position where McGill student services are funded directly by the students, so that our budget is fixed every year depending on the students' desire to increase services. Students always want the best services, and are willing to pay for it. Though we are funded partially by the public system, when I see somebody, we bill medicare, but we are also partially funded — all our administration and psychologists — by the students directly.
[Translation]
Senator Gill: In other words, it is a priority which was set out for this sector in your institution. You are earmarking part of your budget for this sector, and in fact, this has not been done by government. Is this an internal decision?
Dr. Hoffman: Yes.
Senator Gill: Perhaps we could continue this discussion, but indeed, I have a concern which is very similar to yours. I am not a scientist, I am a layman, but I find that our society often makes people sick, including the youth.
This is often due to the standards set in our society and broadcast by communications media, television, etc. It triggers a vicious cycle: people are sick, we make more drugs and we give them more.
I was asking a question in Charlottetown not so long ago. There is high unemployment, so we have to come up with formulas. People work less, so we have to do something, instead of creating jobs, you have to get to the root of the problem.
The same is true in terms of our values as a society. I come from an aboriginal or Indian world. I often think that our problems are caused by a culture that is diametrically opposed to ours and tries to overpower ours. At its root, this is not a mental problem, but it does lead to a string of mental problems when one society wants to impose itself on another.
You were saying that the family has broken down, that there is no family. As a result of commissions and committee reports, in general, recommendations are made. Often, however, there needs to be a legislative framework in place.
You mentioned drug advertisements, and creating a framework for advertising, marketing, etc. In general that type of thing would make people feel safer. Rules are also made to make people feel safer. In the end, we are feeding into the vicious cycle, even if we do not want to be. Do you understand?
This is my concern: What can we do to encourage people to get back to their roots and their points of reference?
[English]
Dr. Hoffman: It is a good question. Again, we need to define what problem we want to address. There is the problem of people with severe mental illness, and information that needs to be addressed there. Then there is the problem of the general population, and people who suffer on a daily basis, but may not fit into a mental illness. We need to provide the right information to the right people, and we need to define what problems we are addressing. A major problem in the mental health field is we deal with major illness on one hand but then try to apply that to everybody who comes into a GP's office. People become confused and are not sure what problem they are talking about. In looking at how medication is marketed, are you marketing it for people with serious mental illness, or are you marketing it for the general population? How do we define things? What information do we have? How do we train people? We need to address all these issues and get them across to the practitioners and the public in a way that makes sense.
The Deputy Chairman: Senator Callbeck, by the way, is a former Minister of Health and a former Premier of Prince Edward Island.
Senator Callbeck: Thank you, Mr. Chairman.
Dr. Hoffman, continuing on with the discussion about drugs, you mentioned that drug companies spend more on marketing than research, and some of these costly new drugs are not superior to some of our old, less costly drugs. You suggested setting up an industry-financed government board. One of the things you said it would do is put emphasis on the pharmaceutical industry to produce more effective drugs rather than more marketable drugs. How would that board do that?
Dr. Hoffman: One thing that is clear, if you look at the way things are marketed — and it is worse in the States where companies market more directly to the public — a drug company will look for a new niche, right?
Senator Callbeck: Yes.
Dr. Hoffman: For example, a company might say, « Social and value disorder has not been tackled yet: Let's do a study on our drug for this niche and see how it fits in, and then we market our drug at the first indication for this. » It is inappropriate.
Senator Callbeck: How?
Dr. Hoffman: This particular drug is not better for social and value disorder than a bunch of other drugs. If the pharmaceutical industry was obliged to submit their research to a government board, a board with qualified people sitting on it, that board could then look at the research and say what this research means, who it applies to, and what information should we then give out to the public and to the medical profession?
We need to do studies. We need to say, ``Yes, they say that they get these results, but these results do not really differ that much from this other result.''
We then say, ``These drugs seem to work in this way, for this indication,'' but when you look at the other drug that has been around for 10 years, we find it works the same way. Our recommendation is to give the majority of patients this old drug because it is cheaper and just as effective but for these particular conditions, you give this drug.''
Senator Callbeck: This board would look at the studies of that particular drug company?
Dr. Hoffman: The board would look at studies in the general literature, other studies that have been done for a certain condition, and try to discuss and describe what may be the most appropriate treatment. This approach is instead of being industry-driven, where the company that markets the most gets the most sales. This does not necessarily lead to best medicine.
Senator Callbeck: No, I agree with you. On the first page — and Senator Gill asked about this — universities have the ability to provide the proper mental health services, and you talked about McGill University and the University of Toronto. You said the students pay for this?
Dr. Hoffman: Yes.
Senator Callbeck: Every year when they register they pay so much?
Dr. Hoffman: There is a student service fee that every student pays each term.
Senator Callbeck: How much, roughly, is that, for the mental health —
Dr. Hoffman: The fee now for McGill is about $300 per term. That is a flat fee that pays for athletics and all student services across the board.
Senator Callbeck: Are the universities looking at doing this?
Dr. Hoffman: All universities have some form of counselling services; some have more, some have less, some may have restrictions, some may limit the number of sessions and some are more open-ended. All universities have these services. It is a question of what degree of service they wish to provide.
Senator Callbeck: On another question, you talked about the relationship between children, parents and extended family, and how these relationships are weakening. You stressed the importance of strong mentoring relationships and the need to help families. Do you have any suggestions or any concrete ways that you can give the committee as to how that might be done?
Dr. Hoffman: We need to provide low-income families with support. We need to have school systems where the teacher-to-student ratio is small enough that teachers know their kids. We do not need to do a depression screening in a school if a teacher knows their kids. They will know which kids are troubled. When the families are under stress, we need to find them relief. We need therapeutic daycare for high-risk families, where the parent can come in and get support and counselling with their kids. We can do many different kinds of programs to strengthen the families that are most vulnerable in our society. I believe this would be the most cost-efficient way of improving the mental health of our country. Start with parents and families.
The Deputy Chairman: We will move on to Sister Lena in a second. Before we do, I think Rémi and Norm should have dinner together two or three nights as there is something really interesting here. You are talking about one of the best mental health delivery systems in the country, and it is a private delivery system, outside the public system.
Dr. Quirion: It is underfunded.
The Deputy Chairman: Yes, but the public system is underfunded.
It would be tremendously important if some kind of comparator could be established. I do not think we could establish a controlled study, but if there were a way of scientifically looking at the outcomes of this system, as opposed to the general system in the same age group, I think it could be tremendously interesting.
Dr. Quirion: Perhaps I could add one little thing here. Of course, it is the nature of the beast that you deal with, but overall, a lot of youth do extremely well, and they function very well. Here we focus on the ones that have trouble but maybe we should study those who have resilience, and why some of them perform extremely well. We always highlight the negative ones. If we were to highlight the positive ones, and the success stories, it would be fabulous. I have nieces and nephews that do extremely well, and they had divorce, and these kinds of things. Why do they do well? That could be a way also to move forward.
The Deputy Chairman: Senator Trenholme Counsell is a family physician, and, Dr. Hoffman, you have been having at her, so now she can have at you.
Senator Trenholme Counsell: These presentations this morning were dear to my heart, and certainly excellent, among the best. It is always dangerous to say the best, but among the best we have heard, and I thank you so much.
I have about four or five little points here: I am trying not to make it too long. It has been 20 years since I finished medical school. I think there has been great progress in mental health care, and I do not hear that very often. I would like to hear your opinions.
Dr. Hoffman: There has been tremendous progress in some areas and tremendous limiting resources in others. When I started to work in psychiatry, within the hospital setting not only were we providing good care for people who had more severe mental illnesses, but we were also providing care for the walking wounded: for the working man and woman and for the families. Right now in Montreal, there is a six-month to one-year waiting list to get an appointment with a psychiatrist in most of the hospital systems. I saw a young man yesterday who had been at McGill. He moved back to Ottawa and he is on a waiting list, six months. While hospitals tend to focus —
Senator Trenholme Counsell: The waiting time.
Dr. Hoffman: — on treatment of the mentally ill, and they are making progress in that area, there are drugs that are better for certain, and there are programs that are better. Again, as the committee has seen, it is still not client-centred. Also, the average person who is feeling depressed in Montreal, and wants to see somebody, is not going to get in.
Senator Trenholme Counsell: This is a matter of services and waiting times in the whole system. The capacity and the ability are there. Would you agree that we can serve patients better because we know more and have better methods of treatment than we had 40 years ago?
Dr. Hoffman: We have better methods of treatment, but without the ability of care we are trying to apply those methods to the broad population.
Senator Trenholme Counsell: When I first worked, I was what I call a ``self-travelling dietician.'' Before I became a physician, I was a dietician. I went to all hospitals in New Brunswick and other institutions, including jails that did not have dieticians and the provincial hospital in Saint John. That was in the days when every patient had a tin plate, a tin cup and a spoon. It was incredibly horrible, so I could write a book about what I see as progress.
I want to ask you about the drug companies. I know whereof you speak, because I know one young psychologist whose work is mainly a liaison between physicians and drug companies, and teaching the physicians to use this checklist and who they ultimately expect to prescribe their medications. How much different is this than the drug companies who go regularly to physicians' offices, and hold soirées, cocktail parties, and so on. I am not against this, but when I think of which arthritic medications I have prescribed, which hypertension medications, which birth control pills and so on, a lot of it was influenced by the drug companies. Is it worse when it comes to psychiatric care and psychiatric medications?
Dr. Hoffman: It is worse when the research does not indicate that these medications are particularly useful for problems that do not fit into a more narrow definition. When a person has a severe major depression that has been properly evaluated by seeing a person a couple of times and getting a good full evaluation, and the doctor gives medication, that is good medicine. When a person comes in and says, ``I feel depressed,'' and they are handed a prescription, that is bad medicine.
Senator Trenholme Counsell: It would be the same thing, though, if you were treating hypertension and you never bothered to find out what was causing the hypertension, you just kept —
Dr. Hoffman: That is right.
Senator Trenholme Counsell: — adding more pills, or changing them, or doing both.
I speak on the family a lot, and lately, many of my speeches have had the family meal in there. We did a study with Dr. Aurel Schofield from Dieppe of a high school where there had been some suicides, et cetera, and 61 per cent of the youth there said they felt alone with no one to talk to, and that was about 10 years ago.
I want to thank you for the things you said about family. It is remarkable to hear those things, and I think they are very true. I also think we will not go back to 75 years ago when we always had the big meal, we were always together on Saturday night and Sunday was family day. That is not going to happen. I think the main thing is communication amongst family members. Of course, all these toys — I wanted to talk to my daughter, which I do in almost every situation, but that is good, I think.
Is it correct that you see so many of your youth at university who do not feel they have the family behind them, or family with them?
Dr. Hoffman: Yes, I have heard that.
[Translation]
Senator Pépin: What leads them to believe that their family is no longer supporting them?
[English]
Dr. Hoffman: In the population we see, there seems to be a lot of anxiety in parents about how their children are going to achieve. The world is changing quickly, job markets are changing and opportunities are changing. Five years ago, electrical engineers were getting many job offers. Now, half the people who graduate cannot find jobs.
Senator Trenholme Counsell: Exactly.
Dr. Hoffman: All the shifts leave parents anxious. Parents then focus to a large extent on their kids' achievement. They take the kids to tutoring, they take them for all kinds of lessons, but apart from that they do not spend time with them. Our whole society is becoming achievement-product oriented. We are not raising children, we are raising products. We are raising marketable youth. That is the way the system is being oriented. If you raise a child with good self-esteem, who feels well connected, they are going to do well in life. If you raise a child with constant anxiety about their achievement, and how they will be marketable in the future, you will raise an insecure unhappy child.
Senator Trenholme Counsell: I wanted to ask about medical schools. To some extent they are getting a bad rap in these hearings. We talk about the fewer hours that medical students have to study psychiatry, but we do not take into account all the time that is given in the two-year rotation for family practice. I think maybe more should be put into this four-year curriculum.
After all, within our system, everybody who goes into family practice has a two-year program, and in that program there would be many of these things such as family counselling — it is a family-oriented kind of program. It is very different than when I did medical school. We had one course in third year on psychiatry, and then we had a month's rotation. It was not bad for the state of what was known then. However, I think we have to modify what we say about the medical curriculum, taking into full consideration the two-year family practice program and what they include there. In the four years, there is not much, but those people go in 50 different directions after that.
Every physician should have some of this sensitivity and knowledge, but we should look primarily at the family practice program and see how well it achieves that.
The youth at university versus the youth on the street: of course, the youth at university have achieved more. Let me give you a little anecdote. I am from a small village in New Brunswick. When I finished Grade 8 and went on to high school, there were five boys from that village. Of those boys, only two finished high school. Three dropped out; two became alcoholics, and one did not become an alcoholic and did okay. I am sure that at least two of those boys had learning disabilities, and we did not even know anything about it then.
If you compare the youth in university and the youth on the street, are there big differences? There is achievement in school, but I suppose you do not have the hard drugs. You do have hard drugs?
Dr. Hoffman: Yes.
Senator Trenholme Counsell: What are two or three of the main differences?
Dr. Hoffman: Again, I do not have research to back this up, but we see a population in which a lot of them are disturbed, but they tend to be bright and motivated. They tend to do well in treatment, and that is the advantage we have. Overall, we probably see a healthier population than out in the streets. They are well enough to get to university.
Senator Trenholme Counsell: To cope.
Dr. Hoffman: To do well, and to cope: They are probably a healthier population, which, again, leaves me concerned, because we are seeing an increase in the stress in this population. Going back to your question, what does this mean about the youth who are not in university, and their mental health? I think that needs to be studied.
[Translation]
Senator Pépin: To follow up on Senator Trenholm Counsell's comments, we hear that an increasing number of young men are dropping out of school, compared to young women, they do not want to pursue their studies, and we have not yet figured out why. Dr. Hoffman and Dr. Quirion, do you have any idea why this is happening, and specifically in Quebec?
[English]
Dr. Hoffman: McGill right now is 64 per cent women. Looking at our stats this year, about 35 per cent of the women we saw came from divorced families. Of the men, only 10 per cent came from divorced families. Either boys from divorced families are not coming to see us, which is unlikely, or they are not getting into university.
Senator Trenholme Counsell: What percentage were from divorced families?
Dr. Hoffman: Ten per cent.
Senator Trenholme Counsell: Of girls?
Dr. Hoffman: Thirty per cent.
Senator Trenholme Counsell: Thirty per cent.
Dr. Hoffman: If you look at boys, they tend to be far more disorganized than girls. They do not work as hard. In my daughter's homework book, everything is filled in with stickers and pictures, and my son's homework book is empty. There is nothing written.
[Translation]
Senator Gill: Guys do not work as hard.
Senator Pépin: But that does not mean they should drop out of school.
[English]
Dr. Hoffman: For a boy who is in high school and living partly with one family and partly with the other family, his books are always going to be in the wrong house.
[Translation]
Senator Pépin: Youth suicide rates are alarming.
Dr. Quirion: We are working with Richard Tremblay and others on studies to that effect. We have the best studies in the world, longitudinal ones, and we are trying to understand why young men are committing suicide and why alcohol and drug abuse is increasing. When they get to university, unfortunately, it is too late. It is already too late, steps had to be taken earlier.
Senator Pépin: You have to nip it in the bud.
Dr. Quirion: We do not yet have the right answers, but it has to be said that men's role in society has undergone rapid change, especially in Quebec. It was a very religious society, people had large families, and we have gone to the other extreme.
Men do not necessarily fit in, and they wonder where they might fit in. Perhaps people do not play sports as much as they used to, so it is difficult. There are however studies that were done by Mr. Tremblay and Mr. Michael Feeney, which may lead to some answers.
Senator Pépin: That is so important.
[English]
The Deputy Chairman: We will hear from Sister Mangalam Lena now, who has been waiting patiently. Hers will be a slightly different presentation, but no doubt extremely interesting.
Sister Mangalam Lena, Home-Based Spiritual Care: Thank you, Senator Keon. I am honoured to be with you, and at the same time I am humbled. I am here because I believe that spiritual care has a great impact on mental health.
My name is Mangalam and I am a Franciscan Nun from Ottawa, originally from Sri Lanka. I am also a hospital chaplain and nurse. At the moment I am working with an organization called Home-based Spiritual Care.
Do you have a loved one, a parent, a friend, a child or a partner who is sick and lonely at home? Are you afraid that they may have to face sickness and helplessness alone, or do they like someone to visit with them, listen to them, journey with them and bring comfort, peace of mind and healing? Home-based Spiritual Care can help.
Home-based Spiritual Care is a non-profit organization. It is a pilot project whose mission is to provide spiritual care to persons who are confined to their homes due to illness, age, infirmity or loneliness, regardless of race, colour or creed. A qualified chaplain, through referral, provides the spiritual care. I take it for granted that all of us here know the difference between religion and spirituality.
Why Home-based Spiritual Care? In Ontario hospitals and other provincial institutions, spiritual care is a necessary function. However, there is currently no provision for spiritual care for home-care clients or for persons who have been de- institutionalized and returned to the community.
Palliative care is supported in provincial health care institutions through the chaplain's service, but there is no help for people living alone, dying at home and isolated from support groups. Home-based Spiritual Care was established to fill this void. We know that spiritual care is a vital component of holistic health care, which addresses the complete person, giving attention to the physical, mental, emotional and spiritual needs. Spiritual care is important to both people of faith and people who profess no faith. Although churches provide care to their members, many people who choose not to be connected with organized religion still need to deal with spiritual matters. Home-based Spiritual Care fulfils this need.
We provide spiritual support to persons discharged from hospitals or health care institutions, individuals cut off from communities, the lonely, the elderly, the families and caregivers who support them. We provide also a drop-in space for those who need someone to talk to. We also train spiritual companions to provide active listening, a compassionate heart and a healing presence. We also provide a safe environment for refugees and newcomers, the new immigrants, to collect with others and share their stories.
This is a new program we started last year. Immigrants themselves requested that when they come to Canada, there are organizations that provide material help: clothing, food and housing. However, there was no place where they could go one-on-one to share their stories. You are aware that many refugees or even immigrants have come from war- stricken countries and they come with ``woundedness'' and brokenness. When they come here, they appreciate all the help that Canada provides them, but they want to share their stories. They are uprooted from their community.
I can share a little bit of my experience, because I am an immigrant. When I came here I had a convent to go to, and my family was here. However, my mother emigrated to Canada 15 years ago, and she had a family and all the comfort, but she wanted to go back to Sri Lanka and die there. Journeying with my mother I felt what loneliness was and what uprootedness was. She was uprooted at the age of 70 to come here to continue her life. I have shared that with my mother: how difficult it was having all the comforts here, and starting a new life.
Journeying with these immigrants, we know that many of them from these war countries have seen atrocities, they have seen their loved ones killed and they have seen their mothers and sisters raped. In this new program, we see how creating a safe environment has brought them peace of mind and comfort.
Why provide spiritual and religious care? During an illness, the human spirit is attacked by discouragement, loneliness, grief, and perhaps a sense of a lost future. Consequently, hopes and values are questioned. Patients as well as families and staff need help to reflect on what is happening to them from a spiritual and religious perspective. Spiritual and religious care enables us to respond to many existential issues such as origin and destiny, pain and suffering, life and death, hope and despair, trust and mistrust, freedom and bondage, separation and reconciliation, and meaning and meaninglessness.
One important task is to provide a setting for people to tell, in a personal way, and in the language of their everyday life, their life stories, their pain and suffering, their loss, their vision and values and the spirituality they have been living. It is to provide this sacred space. Those who come to us become more at ease and find peace of mind in knowing that they are accepted and can unburden themselves. They are grateful for the opportunity, and benefit from being in an accepting and welcoming environment. They re-gain self-confidence and self-esteem. These are the benefits of spiritual religious care on mental health.
Spiritual as well as religious care is vital to the ongoing recovery of those who have been released from hospital and other health care facilities back into the community. It is also a preventive factor and cost effective in that it contributes to reducing the re-institutionalization of those who are recovering from illness. It reduces stress and anxiety for the families.
Spiritual care is especially important for those persons who face questions of meaning and ultimate concern, but who have no previous history or association with the faith community. Spiritual health promotes physical and emotional health. A positive rippling effect will be felt not only on the immediate environment, but also on the well- being of the community.
Health care providers are increasingly acknowledging that spiritual care and healing are often forerunners to physical and emotional healing. Researchers have not been able to find a cause-and-effect relationship, but their findings are consistent with other studies that have shown that those who are spiritual are better able to cope.
Linda Bosh, a Duke University Sociology professor, pointed out that religious people have better support systems, which keep them healthier. The sense of meaning and kind of comfort that religious beliefs provide make them more resistant to stress, both physical and social.
Spiritual care prevents depression. You spoke about depression; people who suffer from depression and other mental illness need to have someone to whom they can talk to. You spoke about students being lonely; they need someone to journey with who offers active listening, a compassionate heart and a healing presence, and then to make them feel that they are important. Some people who come to visit us talk about their worries and problems, and when they leave they say, ``Thank you, we feel much better.'' This is because we are given the time to listen to them and to make them feel important. We did not do anything much, just listen.
Mental health is not only for the elderly, the sick and the lonely. We all need it. The world today is becoming more and more void of spiritual values. If we aspire to build a better world, I think spirituality should be part of our human existence, and it will nourish our well-being and our mental health.
Having said that, and I am sure you may know this, there is a service called Home-based Spiritual Care, which is a pilot project. We had taken the step to provide this service because we find that the lonely and the isolated do not have spiritual care. They do not have someone to sit with them, listen to them, talk to them, and journey with them. That is the reason for which Home-based Spiritual Care exists. Our long-term vision is that spiritual care becomes part of the health care system, and also that it becomes part of home care.
A few years ago, the Ontario MultiFit organization submitted a proposal to the Ontario Ministry of Health to include the component of spiritual and religious care in the community care access centres, and recently I heard that nothing has been done. I propose to the committee that community care access centres provide services to the community, so spiritual care could be part of their services. The case manager does the need assessment and they could add spiritual assessment to the package.
Since we started this program, other provinces like British Columbia, New Brunswick and Quebec have requested we start this program in their provinces. There was an article in Spirituality and Health magazine about Home-based Spiritual Care, and we received many e-mails from the United States asking us to start a branch in the United States. We could be the pioneers in bringing this spiritual component into the health care system.
The Deputy Chairman: It is interesting that at the institutional level the issue of spirituality has pretty well been dealt with by chaplains and services, voluntary spiritual and religious services, and so forth. Of course, one of the big problems is, I think, we have not built our community centres, we have not built primary care integrated with community services, and so forth. We do not have the community centres we should have in Canada, and that, in my opinion, has to be the next big initiative in health care.
Sister Mangalam Lena has a problem in how to plug into this, but in Quebec there are the CLSCs and in Ontario there are the community care access centres that are going to be part of the community health services, I believe, in the future.
Senator Trenholme Counsell: I am touched and inspired to listen to you. Maybe I did not pay close enough attention but I was not sure whether you have had definite links in Quebec with the mental health clinics and with the mental health. Also, the same question applies to the palliative care hospice programs. Are you linked with these organizations, or are you more or less apart?
Sister Lena: Yes, palliative care has been recognized, and palliative care is not provided in the homes. Now, other purposes are to reach out to the lonely and to the isolated in the community: those who do not have any support system or families. The lonely and the isolated do not want anyone to reach out to them, so it is a difficult task to reach them.
Only recently have we discovered that the lonely and the isolated are found in seniors' residences in the Ottawa Community Housing Corporation: there are several in Ottawa. Seniors, themselves, have become homebound because there are complex situations there; they have drugs, alcohol and prostitution in those seniors' residences. The seniors themselves are afraid to come out, so they are homebound.
This evening we will meet with one of the city councillors, Mr. George Bedard. We will bring this issue to them, and ask for a partnership. We know we can reach out to the lonely and the isolated.
Why do we not reach out to the dying and the terminally ill? We know that palliative care has that facility. I do not think they go to the homes, so far.
Senator Trenholme Counsell: When it is a well developed system it is continued from the hospital to the home — I mean, in the hospice, the hospital's concept. However, it is fragmented and only in its beginnings in so many places.
Sister Lena: That is right.
Senator Trenholme Counsell: In terms of liaison with mental health clinics, because so many of our people with mental health challenges are lonely, do you have links with the system here in Montreal?
Sister Lena: I live in Ottawa. We are now initiating work because for a few years the buildings have been in transformation, and they are still not established. We are initiating a partnership with the mental health —
Senator Trenholme Counsell: When you talk about the lonely and the isolated, many of those people are on the streets, more or less. They may have a shelter for nighttime, but a lot of them are quite visible. They may not be visible all day long. They may not sit on the street collecting money, but you see them, whether they are trying to get a bit of food, or whatever. Do you have any street projects or street workers?
Sister Lena: No, we have not done anything for the street because there is so much to handle at the moment.
Financially, we are supported by the religious congregations.
Senator Trenholme Counsell: Yes.
Sister Lena: Financially, we do not have any support from government or city, so that is another problem.
Senator Trenholme Counsell: It is a wonderful program, though.
[Translation]
Senator Gill: I come from a world imbued with spirituality, where it is impossible to separate physical activity from spiritual activity. There has always been spirituality.
This may not be scientific, but we have noticed that people who distance themselves from spiritual beliefs often have significant mental disorders, something that was quite rare in the aboriginal world. I mean mental disorders which were not acceptable to society. As a general rule, it was acceptable and our society took charge of those who may have had a slight mental disorder.
People lose touch with their spirituality, many Indians now live in the streets of our urban centres, something which was unheard of not so long ago. There are high rates of suicide and despair. These two things are related.
I think this is a result of the fact that younger generations wanted to distance themselves from their parent's religion or beliefs. Spirituality has been fading away.
How do we include the spiritual component in our recommendations in order to convince those who will be receiving our report to take action, to apply some of the recommendations?
[English]
Sister Lena: I think in the hospital, they have a spiritual assessment. When the patient comes to the hospital, they ask the patient, ``Do you want pastoral care?'' Sometimes they do not know what pastoral care is, so they say no but there is a system. They do an assessment. The chaplain visits all the patients, not only the Christians, so the chaplains are able to sit and listen to their stories, and then they know whether they are Christians or non-Christians.
However, the services in home care, the community care assessment centres, do not have that assessment tool. Home-based Spiritual Care has existed for five years now, and from the beginning we negotiated with the CCAC, but they do not want to do anything spiritual. We have not given up hope, but if it comes from an authority like the government or Senators, perhaps they might take it into consideration.
When the case manager has an assessment for a physical or social support, they could also have a spiritual assessment too. Then, they can always hire chaplains, or people from Home-based Spiritual Care because we exist for that purpose. From the very beginning they could do that, and they can refer them to the different parishes, or to the different religions.
[Translation]
Senator Gill: We have heard testimony throughout the country about people who suffer from certain disorders, a mental illness, alcoholism, etc. These people are often left to their own devices, and as you stated earlier, they are homeless. Some have suggested housing help, for instance. Do you think that and other services would be desirable for these people?
These people are often stigmatized and have no friends. They have no one to turn to. Do you think NGOs, or not- for-profit organizations, could care for these people and offer them a service, while receiving government support to do so?
[English]
Sister Lena: In an organization like Home-based Spiritual Care, we have a drop-in — anybody can come in. I will give you an example. A man who is not young, maybe middle-aged, was feeling very lonely. He had several girlfriends, and he could not stick with anyone. I think he has a mental handicap. He came to us in the centre, and my secretary and I were there. He said, ``I want to talk to somebody.''
We each had a chat. He shared with us that he cannot stick with any women, and he is so lonely. He said, ``I do not know what to do with my loneliness.''
I listened to him, but what else can you do? I suggested, ``You could come over, and there are special companions. You come and talk to them.'' I am not providing them girlfriends, but then I said, ``You could come here, connect with the other people here, and have a cup of tea.'' Then at the end, he said, ``Can I have a hug?'' He was feeling so lonely, and I was taken aback, but then immediately I felt he was talking to me about loneliness. I gave him a hug, and he felt so happy.
These are little examples to say how people long for a touch, and for company. I am uncomfortable doing that, but still I felt so happy, and I was able to understand what loneliness can be for some people. I think we can open more centres and allow people to come, and make them feel they are important.
Senator Trenholme Counsell: The example of Mother Teresa.
Sister Lena: Exactly.
Senator Callbeck: I agree that spiritual care can have a great impact on mental health. I truly believe that.
I was interested in your organization. You say it is a pilot project supported by several churches in Ottawa?
Sister Lena: Several religious congregations.
Senator Callbeck: It is not really patterned on any other program, or is it?
Sister Lena: No, it is not part of any organization. It is a non-profit organization. It is also supported by some members of the community.
Senator Callbeck: How long have you been in existence?
Sister Lena: Five years.
Senator Callbeck: How many people are employed?
Sister Lena: We have one full-time spiritual caregiver, and we have spiritual companions who are volunteers. They have three months of intensive training, and every year we train special companions so they can reach out to the long- term care, to the homes, and to the seniors' residences.
Senator Callbeck: I read about the three months training in your brochure. Do you get a lot of volunteers? What about the response to that training program?
Sister Lena: It is very good. So far, we have trained 25 spiritual companions in the past two years, and I think we have a good response from the program. At times, we can take only 10, and among the 10 we will have six or seven who complete the training, because it is difficult. Many say that listening is difficult. Also silence is difficult, like when somebody is talking to you and you can listen; and when you can talk, the other person listens. However, when there is a silence between the two, some are afraid of that silence.
Senator Callbeck: What percentage of the people that completed the three-month training are still with you?
Sister Lena: In the first year, we trained a group of Buddhists. They were Roman Catholics, but left the church, and at the moment they were following Buddhist philosophy. At the end of the session, they wanted to take Communion and follow some of the rituals. However, we did not let them do that, because if you take Communion, you need to believe in what you are doing. We had to tell them that it was not possible. We had a little problem with the first group of people.
At the moment, we have eight completed spiritual companions, and Mr. Robinson is one of our spiritual companions.
[Translation]
Senator Pépin: We have heard various representations from Canadians of different ethnic backgrounds who expressed how important it is to meet people from their own community who can speak their language, and share the same spiritual traditions. I fully agree with that.
When you say that you are listening, I think this is very important. You said earlier on that ``spiritual care prevents depression.'' I am not a doctor, but I think it is very important for people to be able to confide in someone and to know that someone is listening. Could that go so far as to prevent depression?
Listening to you, I was thinking about the need for these people to have someone to listen to them, to know that someone is there to comfort them, and it gets back to what Dr. Hoffman was saying about the importance of young children having relationships with their parents and grandparents. I think there must have been a gap there.
I would like you to elaborate on what you were saying regarding spirituality preventing depression. I think that yes, it may, depending on culture, but perhaps not in general. I do not know.
[English]
Sister Lena: I also speak with my experience of immigrants, because when newcomers come, especially the elderly population, they do not know the language, French or English. They face great culture shock and the uprooting of the process. When they come, what do they do? Children go to work, and they are at home doing nothing. They have nobody to talk to, and they are inside. They cannot listen to the television.
There are also men. The men take alcohol, drugs, or women. However, the women do not know what to do. They stay at home thinking of the past and their country. We have examples where we had journeyed with them, and you could see how they have changed. That is why I say we can prevent problems, prevent them.
I do not say that spirituality can be a cure for all, but for this category of people, we need people to give them a boost. You need to bring out the positive in them and give them a boost — and I think even young people, because when young people have problems, there is no self-esteem. Also, they do not feel important.
[Translation]
Senator Gill: Dr. Quirion, you mentioned some statistics earlier on, on page 10, I believe. Is research being done on aboriginal peoples and on reserves? Do you know what resources are currently available?
Dr. Quirion: At the Institutes of Health Research we have an institute that focuses on Aboriginal communities.
Senator Gill: Really!
Dr. Quirion: It has the same budget as our institute, in terms of policy initiatives. So, for the time being, they are doing a lot of work on diabetes, for instance, and heart diseases. We collaborate with them on suicide. Obviously, it has to start within the community. Existing research programs are initiated by the community and we try to encourage some activities.
Senator Gill: May I have the address of that institute?
Dr. Quirion: Yes.
Senator Gill: I imagine they are also working on mental health problems?
Dr. Quirion: Yes. Jeff Reading is the director and he is wonderful, we have several partnerships with them.
Senator Gill: Is it based in Ottawa?
Dr. Quirion: Yes.
Senator Gill: I would like to have their address and phone number, if you can provide that to me.
Dr. Quirion: Yes.
[English]
Senator Trenholme Counsell: Dr. Quirion, your institute is the Institute of Neurosciences, Mental Health and Addiction?
Dr. Quirion: Yes.
Senator Trenholme Counsell: Did you say something to the effect that there needed to be more emphasis on mental health in that institute?
Dr. Quirion: No, it is more in general. If we consider what we call the burden of disease, cost to society and incidence of mental illnesses, Canada, via the Canadian Institutes of Health Research, CIHR, needs to invest more in mental health research.
Senator Trenholme Counsell: You mean more of their total budget?
Dr. Quirion: Canada needs to invest more of the total budget, yes, in mental health research.
Senator Trenholme Counsell: Compare yours with cancer in terms of percentage of their budget. I am just looking at this chart.
Dr. Quirion: It is a bit of a complicated model, because each of the 13 institutes has the same budget to start with, for what we call strategic initiatives for special programs.
Senator Trenholme Counsell: Each year you get the same?
Dr. Quirion: Each year we get the same. The other portion of the budget is for what we call the open competition. Anyone in the faculty of medicine or other faculties in the country can apply. It is an open competition, it is peer- reviewed and the best applications get the grants. We have had such a large expansion in terms of issues related to mental health and mental illnesses over the past few decades that this area is underfunded compared to other disease entities, if you will. Also, research for mental health and addiction is almost all funded via the federal government.
If you think of cancer, you have the National Cancer Institute, a large non-governmental organization that will put about $50-million a year in research. The Heart and Stroke Foundation of Canada for cardiovascular disease is about the same. However, with the non-governmental organizations related to mental health, it is still hard to raise money. Probably, again, it is due to stigma. Like me, you give to kids and you give to cancer but to give to mental health or schizophrenia, it is a bit harder. To give to addiction is the worst. If you say they are alcoholics, it is their problem. It is because they are weak. They have to shape up.
We have a challenge there because there is a huge burden of disease. At the moment, the volunteer sector is there to help. It tries to help, but without much money compared to other large organizations.
Senator Trenholme Counsell: You mentioned the university research projects. Is there community-based research other than university-based research, or if it is community research, would it always be directed by someone in the university? Is all of this coming through the university system across the land?
Dr. Quirion: It used to be like that, and over the past few years with the Canadian Institutes of Health Research, various programs now are initiated by the community.
Senator Trenholme Counsell: Can a community organization, or even an individual, apply?
Dr. Quirion: Yes, a special program is called the Community Alliance for Health Research. There is one, for example, in Kahnawake on diabetes in that community. The program is mostly prevention there, in terms of what types of food you should eat, exercise, and all these kinds of things. It was started by the community that said, ``We need to do that.'' Then, they developed links with McGill and other universities...
Senator Trenholme Counsell: Do you have a big competition with neurosciences, or do you share?
Dr. Quirion: There is more and more interaction between the two, so we are trying, in a sense, — as Senator Keon was saying — to find ways to bring psychiatry into the 21st century. We are trying to understand a bit more biology and sociology behind it, to put these things together. It is still challenging. It is like someone speaking Chinese and the other one English, so...
Senator Trenholme Counsell: Yes, of course.
Dr. Quirion: Yes, it is different cultures, but I think it needs to be done.
Ms. Michelle Dawson, as an individual: I probably will ask for a little more time than my original presentation. I think it will save a lot of questions later on to make everything clear at the outset.
My presentation is called ``The Word is Out About Autism: Canada in the Era of Autism Advocacy.'' I am a diagnosed autistic and a researcher affiliated with Laurent Mottron's autism research group here in Montreal. Dr. Mottron is a University of Montréal Professor of Psychiatry, as well as a CIHR-funded researcher, and the director of a busy autism clinic. I also work with the highly respected American experimental psychologist, Morton Ann Gernsbacher, who recently was voted President Elect of the American Psychological Society. I am interested in many areas in autism, including cognition, ethics, epidemiology, human rights, behaviour interventions, self-injury and self- care.
I have an atypical organization called ``No Autistics Allowed,'' to which many autistics and non-autistics contribute.
In addition, I have done a lot of legal work, including successfully intervening in Auton v. British Columbia at the Supreme Court of Canada, where I was the only intervener who opposed the unscientific and unethical positions taken by both sides, as well as the only intervenor mentioned in the court's decision. More recently, I became the first person to have an autism-related complaint referred to the Canadian Human Rights Tribunal for a hearing.
Recently, I set a different kind of precedent by losing three cases at the Quebec Human Rights Commission. Here it was ruled three times that autistic people are, in fact, a plague, and that describing us this way is not harmful to us, but is truly beneficial and a sign that non-autistics with good intentions are helping us. Indeed, autistics should be grateful to have such dedicated advocates raising public awareness of our plague-like nature on our behalf.
The legal situation of autistics in Canada is unique. For no other group, have the rights guaranteed for all other Canadians been so thoroughly obliterated. This situation is the direct consequence of the ongoing era of autism advocacy. Finding a jurisdiction which is still able to consider us as human beings with human rights verges on the impossible. Canadians have rights imbuing them with worth and dignity, and protecting them from being demeaned and coerced, but autistic Canadians do not. Autism advocates, or those who call themselves autism advocates, some of whom this committee has heard from, have successfully argued that for autistics there should only be one right, the right to what the advocates advertise as ``effective'' autism treatment.
In the course of arguing for this one right, autism advocacy groups such as families for early autism treatment, FEAT, groups and autism societies have argued that autistics inherently have no possibility of dignity, integrity, health, liberty, worth, learning, security, et cetera, or even of life itself. In short, we are inherently too defective to have Charter rights.
For example, FEAT Ontario argued at the Supreme Court of Canada that autistics are less than half living, and they have insisted that autistics belong not in families or in society, but in institutions. Autistics have been portrayed by autism advocates in the most dire and horrific terms. We destroy ourselves, our families, and the economy, and there are promises that we will shortly ruin the entire country, so long as we are not expensively fixed. Our continued existence, as ourselves, as autistics, is held to be an affront to the whole idea of Canada.
At the same time, autism advocates claim that this impending national catastrophe can be averted if there is unlimited funding for intensive interventions based on applied behaviour analysis, ABA, Lovaas-type or otherwise, for autistics of all ages. It should not surprise you that the premise of these comprehensive interventions, designed to occupy most of the waking hours of an autistic, is that autistics inherently lack humanity and personhood. As human beings, we are write-offs. Autistic abilities and traits are assumed to be non-existent or destructive, useless, and wrong. There is everything to gain and nothing to lose if our lives are dedicated to striving every minute to be normal, that is, non-autistic. The goal of this kind of intervention, Ivar Lovaas has repeatedly written, is to build a person where none exists.
The nature of the treatment itself, along with the way it has been demanded by autism advocates in the health care system and elsewhere, has resulted in autistics having a less than human status in Canada. Governments and opposition parties, federal and provincial, have utterly failed in their duty to recognize autistics as human beings with rights, interests and worth. To the contrary, politicians of all stripes have expediently heaped creative insults on their autistic constituents, while the current federal government boasts about opulent funding for preventing our existence altogether.
Provincial human rights commissions have similarly failed to accord autistics any worth, whatsoever. Ontario's Human Rights Commission told me that autism is cancer — another prominent idea promoted by autism advocates — and that my only right is to get rid of it. As an autistic, I now have no other rights.
When I expressed dismay that the Ontario Ombudsman had, among many other insults to disabled people, persistently associated violence with disability, I was informed by this ombudsman's office that autistic people are, indeed, violent. I had previously thought that associating violence with disability was no different from, or more acceptable than, associating violence with race. However, the word is out about autism, and I was put firmly in my place.
A few words about these hearings: Senator Kirby, who is not here, as far as I can tell, has, in these hearings, misrepresented and mocked the polite request by an autistic person that autism be portrayed accurately in these hearings. ``What an absurd request,'' he is on the record as saying.
How strange, how nearly offensive it is for a person who is autistic to point out that misrepresenting, sensationalizing, and demonizing autistics is harmful to us. This is on the heels of this entire committee's decision to highlight and distribute, among other misleading and harmful views of autism, a statement by an Autism Society Canada board member that autism is worse than cancer, because autism is not fatal.
As with my cases presented to the Quebec Human Rights Commission in which I objected to the existence of autistics being called a plague, I was informed that portraying autism as more dreadful than cancer was helpful to autistics, if I would only understand. This committee seems sure that promoting fear, dread, and hatred of autism and autistic people will help us.
I do not think I should have to explain why we are not helped by hate speech, and other gross violations and denials of our rights.
Because autism advocates have had nothing good to say about autistics in these hearings, I am providing a short list of some autistic characteristics found in the scientific literature. Most of these findings are published in peer-reviewed scholarly journals: one is in press, many of them have been replicated and a few of them are presented at recent major research conferences and have not yet been published. Here they are.
Empirically documented autistic strengths include the following: enhanced visual search abilities; enhanced visual discrimination; superior ability in disembedding figures; enhanced auditory pitch memory; pitch labelling and pitch disembedding; superior speed of processing; superior performance in detecting and responding to visual, social and non-social cues; faster sentence comprehension; superior performance in detecting changes in pitch; enhanced memory of semantic and visual stimuli with less susceptibility to false memories; superior pitch discrimination and categorization; superior accuracy in graphic cued recall; superior phonological processing; superiority in maintaining shape constancy; faster grammatical computation; superior numerical estimation; enhanced perception of static first order visual stimuli; superior recognition of faces with a one feature prime; and superior individual feature processing.
In this list, which is not comprehensive, I have not included superior abilities in specific intelligence tests. Neither have I added in the great susceptibility of autistics to develop savant abilities, and our extraordinary ability to learn well in ways non-autistics do not learn well. These are also in the science. In the case of learning, it is Dr. Lovaas who so routinely observed autistic learning, which he admits happens in the absence of either teaching or reinforcement, that he had to invent a name for this phenomenon. However, he continued to deny that this was real learning because it is not how normal people learn. He deployed the full undeniable power of ABA to extinguish this learning, including extinguishing savant abilities or genius behaviours, which he considered abnormal and unwanted.
Autistics should not have to justify our existence by providing a list of strengths which may then result, if we are lucky, in our being authorized to live. We are most reliably defined by our innate autistic strengths which exist in all autistics, regardless of how our level of functioning is judged. As with all innate characteristics, like left-handedness and homosexuality, removing autistic strengths is hard work. This is one reason ABA programs are so expensive and arduous. Our tenacious and intractable strengths get in the way of any attempt to make us resemble normal people.
This is my second to last point, and then I will make recommendations. This is a short exploration of the recent Wynberg decision. In the Wynberg case, parents took on the Ontario government over funding for ABA for school- aged autistic children. As a result of this decision — which, in the words of Mary Eberts, is ``the law of the land,'' children who are in ABA programs have human dignity, they have Charter rights. However, this decision also states that autistics who are not fully engaged in striving to be normal via ABA programs do not have dignity. Autistics are ruled to be unable to learn any other way, or towards any other goal, or to have any other possibilities. Either we strive to be normal through ABA, or we lack human dignity and worth, are not welcome to participate in society, and are judged not to have what it takes for ``membership in the human community.'' That is a quote directly from the decision.
I have exactly the characteristics now enshrined in ``the law of the land'' as useless, maladaptive and wrong, and I lack many of the skills now legally defined as qualifications for human dignity and ``membership in the human community.''
On one hand, you should not be surprised that autism advocates roundly applauded this decision, which has the effect of requiring disadvantaged groups to qualify for Charter rights, and indeed, for humanity itself, by sufficiently becoming normal, which, in this case, means non-autistic. On the other hand, you should be surprised that the same autism advocates who insist that autism is cancer and that ABA is a medically necessary treatment that must be provided in the health care system, declared Wynberg a wonderful victory.
But Wynberg, like the similarly celebrated Bettencourt decision, entirely denies that autism is a health care issue and that ABA is a medical treatment. Indeed, all the experts for both sides in Wynberg, and as is typical in these supposedly adversarial procedures, both sides provided only evidence supporting ABA. Both sides agreed that ABA is not medical in nature, and is not at all a medical treatment. The successful lawyers for the parents in the earlier Bettencourt case stated that the key to this victory was their position that autism is not a health issue, at all.
Decisions made about the nature and needs of autistics in Canada are inevitably made according to the nature and needs of people who are not autistic. There is no consideration of who autistics might be and what we might need. Either we are horribly sick or we are not, depending on what non-autistics need. Autism advocates claiming to represent us characterize us as devastating burdens and cannot contemplate that we need anything except to become non-autistic. They have no concept of autistics succeeding as autistic people. They have shown no interest in actually helping autistics: in obtaining for us the respect, acceptance and assistance we need to succeed as autistics.
Wynberg also documented that children in ABA programs learn that autism is a very bad thing. They learn that it is important not only that they, themselves, get rid of every bit of their autism, but that every bit of autism in all people must be gotten rid of. These children are lavishly reinforced for all incremental progress towards the ideal of being normal, and are discouraged, ignored and shunned for in any way being autistic. Having learned intensively through most of their waking hours for many years that being autistic is wrong, many of these children — as reported by autism advocates and in cases like Bettencourt — ``disintegrate,'' become distressed and out of control, and cannot function at all when there is any reduction of the reinforcement that they depend on.
While I do not have time to challenge all the unscientific autism statistics which have been rampant in these hearings, any objective examination of the extravagant claims made here by autism advocates will demolish any notion that these advocates are at all concerned with science, research, ethics, or evidence. Critical thinking is required. For example, anyone proposing that there is an explosion, epidemic, or otherwise staggering increase in the prevalence of autism does so without a scientific leg to stand on. You should notice that every attempt is made by autism advocates to make everyone terrified of autism and autistic people, and you should notice that there is no factual or ethical foundation for this relentless campaign of fear and intolerance. You should notice that autism advocates, with the full cooperation of people like yourselves, are working hard to ensure that autistics will never receive the help we need to succeed as autistic people. Unless you reconsider, you are standing alongside autism advocates and ensuring that Canadians will never find out what autistics can achieve in a society where it is okay to be autistic.
The Deputy Chairman: Michelle, I would ask you to make your important points because I have to leave time for the other two witnesses.
Ms. Dawson: I have recommendations if you want to hear them.
The Deputy Chairman: Okay.
Ms. Dawson: The first recommendation for this committee is that this committee and the Senate, as a whole, apologize to autistic Canadians for using your power and resources to promote and distribute false and pejorative information about autistics which is likely to be damaging and dangerous for us.
Second, further, that this committee include this apology in their final report arising from these hearings, and that this final report should exclude all false, pejorative, damaging and dangerous portrayals of autism and autistic people.
Third, that the above-mentioned final report make it clear that autism is not a mental illness, that autism is receiving a great deal of attention due to the efforts of autism advocates, and that this attention, because it arises from factually false and ethically indefensible portrayals of autistic people, has harmed and damaged us.
Fourth, and last, that the same report acknowledge that autistics, like non-autistics, can suffer from mental illnesses, but that autistics, due to living in a society which demeans and disrespects us, and accords us no rights, has specific problems with situational depression, self-hate, lack of any sense of worth, and suicidal ideation or suicide. This is not, in any way, due to being autistic, but due to constant messages from our society and its leaders that we are worthless, wrong, and an appalling burden on everyone.
The Deputy Chairman: Michelle, I will interrupt you there and ask you to file the rest of your recommendations with us, and we may have time in the question period to get through them.
Ms. Dawson: Okay.
The Deputy Chairman: I have to leave time for the other two witnesses.
[Translation]
Ms. Maria Labrecque Duchesneau, Au cœur des familles agricoles: Mr. Chairman, I have five minutes to present Au cœur des familles agricoles. My work focuses on the psychological distress of farmers. I decided to speak to you from the heart and not through a written brief.
I have been working with farmers for five years now and I have noticed that the stress is everywhere and harder and harder for farming communities.
You are certainly aware of the fact that suicide rates among farmers are quite high, throughout Canada. Au coeur des familles agricoles main mission is to create a network within the farming community.
Why? Because farmers trust other farmers. Because doctors have often told them, take two weeks off. And you cannot take two weeks off, when you are a farmer.
Several factors lead to this distress, including the weather. It is stressful to have to adjust to it. Production costs are hard to meet; there is the issue of prices, globalization, and farm transfers.
Today, the average farm owner is approximately 50 years old, or more. At the moment, Canada is seeing farmers hand over the farm to their children. This process is not conflict-free, and requires money. It is not as simple as one might assume.
When knowledge meets experience, as all of you who are parents here know, negotiating with children is the challenge of a lifetime.
And another significant stress factor is having to live with one's family for life. Add to that the extended family: Dad, mom, the young man gets married, the young woman gets married, has children. All of these people live in close proximity.
Moreover, farmers do not take much vacation time, because they don't really run their business. What I mean to say is that their business runs them. The process has become so burdensome that producers do not see the light at the end of the tunnel. I have gone throughout the country, and people from New-Brunswick, PEI or British Columbia, throughout Canada, have asked Au Coeur des familles agricoles to get involved in their sector.
If this has not been done, it is quite simply because I have not had the time or the energy to get there. At the moment, there is a study being carried out by the Rural Secretariat as well as the Canadian Farm Business Management Council. They are planning on taking up the torch, and at that point I will become a resource person for them.
So these people work seven days a week for very little income. It may seem otherwise to an outsider who may see land in Quebec as being of high value, but farmers also have debts to go along with that, so in the end, they are far from millionaires.
Now, as to how I reach out to farmers: I just go to them. For the time being, people have to seek out health care; I say: health should come to you.
I open myself up and make my clients available to researchers who can help find ways to bring health to farmers, not the other way around. Farmers are hard-working people, as I have stated.
I will give you an example: farmers read agricultural publications. Information about health can be found in general interest papers, such as The Gazette or La Presse et cetera. But farmers read farm newspapers religiously, as though they are reading the Bible.
Senator Pépin: La Terre de chez nous.
Ms. Labrecque Duchesneau: La Terre de chez nous, precisely.
In reading all the documents, I saw a link with aboriginal people. Farming is a world unto itself. Farmers understand one another. When they get married, they avoid getting married around the time the cows have to be milked. Everything revolves around the business.
However, there does not seem to be much room for health, so Au coeur des familles agricoles has decided to come around to farmers. Personally, I go onto the land with farmers, I pick up stones with them, perhaps not every day. Quite simply I do what they do, with them.
I come from an agricultural background. Thirty years ago, yes, it was about religion, and I was reminded of that by Sister Lena. My father was a practicing Catholic, and on Sunday, on the Lord's Day, we rested.
We said the Holy Rosary as a family. You know all about this. But today, things have changed. It is about production, and performance. Today, it is about getting things done quickly, because it may rain tomorrow and it has to get done today.
The spring and the fall are two very intense seasons for farmers, who do not get much sleep then. They have to dry the corn. So, in order to talk to farmers, I have to wait until the winter. But in this day and age, is it normal for a dairy producer to have to find himself another job to make ends meet? Is it normal for a pork producer to have to get involved in processing, and marketing?
Actually, I mentioned someone who got involved in processing, to illustrate how important their farm is to them, how far they will go. These businesses are handed down from generation to generation, it is in their blood, it is in their genes; farm farmers give their heart and soul to their business. They would rather die than have to declare bankruptcy and leave their farm. They would rather die or leave rather than have others realize they just cannot make it.
Yes, farmers have very high suicide rates, but it is all due to what agriculture has become today.
I am making an essential request today. I must act quickly, I am turning a page, but I did notice a sentence in the questionnaire from your third report that states:
What should be the top priorities for the federal government as it starts the process of changing the way it delivers mental health services and addiction treatment to Aboriginal Canadians?
Let us replace the words ``Aboriginal Canadians'' without wanting to diminish the importance of what they are going through, with the words ``Canadian farmers.''
I would ask you to consider agricultural families as a target priority group: we need to gain a better understanding of the distress these families deal with; we must carry out new research on this group — the figures we have date back to 1987 — we must focus on agricultural families rather than expect them to come to us; and we have to recognize that in order to reach out to farmers we have to focus on their businesses — this is very important — and we must be innovative in setting up a central community liaison.
Earlier on we were talking about what could be done to improve mental health. I believe in a central community liaison figure. I think we all live in a speeded up society. At night, when we go to bed, we think: Good God, what a lot of things I did today! But it is like this 365 days a year. I am convinced you are here for work, and far from your families today.
A community representative in rural areas is important because you need a non-political person, who has a good understanding of his community and can say: listen, are you ready to set aside 10 minutes a day for such and such a person? Oh yes, let us see, you are a dentist, et cetera.
In the end, people can help one another, they just have to be asked. This community resource person would be responsible for doing the work you and I and our communities do not have time to do. It would be important for someone to be there to give us a picture of their municipality and create that link.
Who would be this community representative? I have a friend who has multiple sclerosis and who has enough strength to get to the toilet at 9 a.m., but the services that have been offered to her start at 1 p.m. So she has to sit on the toilet until 1 p.m..
I have had to move heaven and earth, because she does not live close to me, but she does live in the city I was born in, so I do know many people there. I made phone calls and it did not work. People said to me: ``I would like to, but you see, I will be bowling, I will not have time.'' Or ``I am finally retired, what more do you want from me?''
This is where individualism has taken us, even in our rural regions, people are incredibly self-centred. So this community link would give people the feeling of belonging to their community.
Let's face it, in small municipalities there are no more priests; there is no post office to help us maintain these connections. In small municipalities, there is no postman, so when we go pick up our mail, we say ``Hello, how are you?'' Take for example the religious community that hired a private firm to see why there was such an uneasiness within their group. Well, it had to do with the cafeteria and that the brothers were no longer engaging in conversation. The suggestion was to put bread and butter on the table, so people would say things such as ``May I have the butter, please?'' ``Can you pass me the bread, please?''
There are simple ways to get people to interact in the morning. With my farm producers, I say ``Did you thank your son recently for all the work that he does?'' ``If you had ten things to do, and nine of them are done, why are you talking to him about the tenth one that is not done?'' Small things make a big difference. This is how I work with them.
Let me come back to the community representative. The community representative is informed about health resources and local resources; he is informed about the resources offered by the government and community organizations.
It is fitting to give special importance to our agriculture, because as you know, it is a part of our basic principle, the Maslow pyramid, which means that we need to be fed and clothed before passing on to another sphere. Food is important. People are so ignorant of farm farmers that I can give you two or three small examples that will make you chuckle.
Did you know that eggs are a dairy product? Yes, indeed! Do you think that people who say this have no education? Did you know that ham is not pork? Yes, ladies and gentlemen, I have heard them say things like that.
People do not know what farmers do. It is time to give them back their due. Because from what I can see, all across Canada, our agriculture is in jeopardy; and I mean every word I say, because things are changing in an amazing way.
Mr. Chairman, let me make a brief personal aside. The people who came before us wanted to know what could be done. I have a sister with a serious mental illness, and we raised the issue of families. Let me tell you that families also have their limits and all too often, patients are returned to their families too soon.
It is no easy task to spend one's life with a person who has a serious mental problem, believe me, you have to have experienced it to get it. I would love to speak to you about happiness, but I have more sad than happy things to say about that situation.
I have one clear request to make to you, namely, change the legislation. Change the legislation because for families, our only resort is a judge. When my sister takes her medication, she is well, but when she decides to stop, the horror stories begin. We have absolutely no rights at all, is always 18. This is illogical, because she is not 18 all the time. But the legislation says that she is.
I had another problem with a child I adopted. At the age of 14, even if there is a real problem, the child has the right to refuse to see a counsellor. But what rights do I have as a mother to help that child? I do not have any.
Sad to say, my father is 90 years old, and who will take care of my sister? Our mother has passed away. Let me tell you that families have their limits. Put yourself in my place, as I sit and watch the 5 p.m. news on television and learn that my sister is shackled hand and foot, what would you do? We knew that there was a problem and that she had fallen through the cracks of the psychiatric system at some point. My heart was in my mouth. We are trapped in a legal system, and a second round is already beginning.
I said that families have their limits. Families have never been listened to. Many psychiatrists say, although a mentally ill person affects many people around them, they would say: this lady is my client. They never want to listen to the family. I have never sat down before a psychiatrist, nor did my mother, although we did request to do so.
Families have their limits. It is not that they want to wash their hands of the problem and have some peace, but they want workers in the field of psychiatry to understand that they must take their responsibilities in hand. We all had to sign a waiver of responsibility.
Indeed, it is painful to spend 45 years with a sick person. I still find it hard to talk about this, because up to now, has anyone sat before you and said, yes, I am a family member?
I would be ready to work with all the researchers in the world, but I have spent 45 years of my life with my sister, and researchers never come to our home, nor do physicians. I even witnessed a five-minute telephone consultation with my sister, without mentioning all the medication that has been tried and prescribed, because I can tell you about all the diagnoses that go with it. They change about every three years. So, explain to me how I should react.
My God! I have spoken a great deal, and I am sorry, Mr. Chairman. This comes straight from the heart. Let me repeat to you how important it is to think of the rural environment, the agricultural environment; we need our agriculture. And I tell you that this is not happening only in Quebec. I have met people from New Brunswick, from British Columbia, from Saskatchewan, from Manitoba, from Prince Edward Island and from Ontario, and the problem exists everywhere.
[English]
Ms. Audrey Bean, Copresident, L'Abri en Ville: It is so interesting to hear these other two presentations, and I suppose in one sense, neither of them contain good news. I have something to tell you that is very good news, and it links, to some extent, to what Maria Labrecque and Michelle Dawson have said, because they talked about isolation and the kind of isolation that people with autism and mental illness, such as Maria's sister, experience.
I represent a group called L'Abri en Ville that was formed 14 years ago out of the concerns of a Social Justice Committee of a number of downtown churches. They looked around, they met to consider urban issues of social justice, and they started a group called ``Auberge Madeleine,'' which is a shelter and still exists in Montreal. What they saw at that time, about 14 years ago, was that people with a mental illness were being de-institutionalized from the hospitals.
That was good news in one way because it was partly because of the advances in medication, and the fact that people could function on their own in many cases with follow-up from their team at the hospital. One thing that was clear was the housing situation. Many times, people, for lack of housing, would fall into the hands of the law. Many of the housing solutions were along a kind of continuum, with hospitalization at one end as a kind of housing solution, and then a number of places that people could go that were temporary, but these all had a limit.
They heard from someone on the West Island named Shelagh Coinner who had started a group called Create a Rehabilitative Environment, CARE, and that group had looked at the issue of those with a serious mental illness who had, nevertheless, insight into their illness, and who had a kind of mental illness like schizophrenia, for example, where they could live in community. There are some diagnoses that cannot live in community, for example, personality disorders and obsessive compulsive disorders. These people often need to live on their own. However, there are others, and one of those certainly is schizophrenia, where often communal living works well.
What they did was to interest various churches in renting an apartment, and creating a circle of friends from among the congregation of that church. This was not religious and was not intended to be religious, but it was calling on churches because churches have a sense, an ethic, of welcoming the stranger. They know what it is to welcome the stranger. Eventually, they had 10 apartments of three persons each, and the supportive social structure.
That is what L'Abri en Ville replicated, but in the more urban downtown environment. That has been going for 14 years now. We have 10 apartments, each of which has three persons with a serious mental illness, but who are committed to taking their medication and who can live in community.
Then, we form a circle of friends for each apartment, and we have a core staff that have weekly house meetings. As in any little community, there are problems that need solving and things that need to be discussed, but those generally can be worked out with the help of a coordinator. They happen to be social workers, but it would not be entirely necessary.
We work with the psychiatric institutions to identify people who would benefit from our particular kind of living arrangement. We deal with two things that are essential to stability for someone with a mental illness. One is permanent housing, a home, a place where they can invite people to, a place that reinforces a sense of identity, and a place from which they can then re-relate to their families. Maria's sister, for example, let us say if she could find a way of living apart, that healing of the relationship with the family is quite extraordinary, sometimes.
Then, we provide social support, so that we have dinners, people go to one another's houses and we provide that bridge back to the community for a person who has suffered the isolation that those with a mental illness so often suffer.
It is a model that is simple and can be done by any community. We are about a 100 people, with 30 residents, about 60 or 70 volunteers, and a working board of 20 people. We now have a grant. We had one from Human Resources Development Canada, and now one from the McConnell Foundation, to replicate our model in other communities in Canada.
If you know of people who are interested in providing this kind of a resource in their community, we invite you to contact us, because we have the resources and some funding to help other communities start this kind of a needed resource.
As far as linking to the Senate committee's mandate, I think, one, we provide an example of success and encouragement for client-centred work. We are a very client-centred organization, and we are an illustration of how successful that can be.
Then, we have a number of lessons that we have learned in our connection to the formal medical system, and in that respect we have a number of things to suggest, whereby working closely with community organizations like ours who have a link to the client could be improved. Those could be improved structurally, and they could be improved in terms of incentives. As we all know, any medical system, or any system, is held in place by a huge number of structures and systems, including, often, the reward systems and the incentive systems. Obviously, if you want to change to a more integrated system, and a more client-centred system, you have to look at those many systems and structures that are holding the current paradigm in place. There is just no way around that: if we want people to work as a team, we must reward them as a team.
All that is the hard work of implementing the things that you have recognized are weaknesses, and I am sure I cannot teach you much about that.
The Deputy Chairman: That is extremely interesting. How are you financed, again?
Ms. Bean: Out of a budget of, say, $190,000 or $180,000 a year, about $35,000 comes from the Régie Régionale, and the rest we fund-raise ourselves. We are non-profit and we raise our own funds.
The Deputy Chairman: Maria, I want to confirm that we have heard the very same thing out in Western Canada about the farmers' networks, and so forth. I do not want to take any more time, because there are just a few minutes for questions.
Michelle, I will read the rest of your recommendations. I have talked to you at length before, but I will read them carefully.
[Translation]
Senator Pépin: Good afternoon, Ms. Labrecque. As Senator Keon mentioned, we met families when we travelled through the Canadian west, but let me say that I was rather astonished when I realized that farms were disappearing at an alarming rate. In Quebec, for most of us, at least our grandparents lived on farms. For instance, I remember Saint- Grégoire very well.
Of course, there is great distress and you are making recommendations. In the west, we heard that there is already a telephone line where people can call in 24 hours a day for help and get referred so that they know where to go.
Then you mentioned a way of recognizing the signs of burn-out, and also that there should be a brochure on illnesses. But do we also have that? Do we have that open telephone line? Are we organized so that we can refer them?
Ms. Labrecque Duchesneau: Not for farmers alone. Currently, suicide prevention centres are responding. This does not mean that farmers will take the resources as such.
Senator Pépin: This is not addressed to them.
Ms. Labrecque Duchesneau: Well, there are difficulties. Personally, I am counting on the farmers themselves. In my sector, I say that a farmer can help another farmer. A farmer can accompany another farmer to visit a resource. But if one cannot do it, you can call someone else. Then someone else will go out of their way to accompany the farmer to the resource.
I count on farmers because they understand their work. They know that they will not be told ``You are working too hard,'' because they all work equally hard.
Senator Pépin: They understand each other.
Ms. Labrecque Duchesneau: They understand each other. They are very intimately associated, as you know, through auctions, agricultural fairs, and all kinds of agricultural events. This is why these people trust each other more than anyone else. And I count on that and it works.
Senator Pépin: Does that mean that if someone uses the suicide hotline they can get referred? It would be possible if someone from the community could then call and say that there is a colleague there to help you.
Ms. Labrecque Duchesneau: Exactly. But people in agriculture understand each other. I doubt whether many farmers turn elsewhere with their needs. In fact, the health sector recognizes that not many people from the agricultural sector seek out help. This has led to cumulative problems and many suicides.
So, Au cœur des familles agricoles may not always be there on time, but we reach out to families. Because you know, even if someone has committed suicide, the cows have not disappeared.
Senator Pépin: The show must go on.
Ms. Labrecque Duchesneau: That is right, and one can never forget the business, never, despite all the life events that may happen, people can never forget their business.
Personally, I like to count on the youth. Three days a week I go to the ITA, the Institut technologique agricole, and there, I have a whole list of young people who are willing to volunteer their time and respond to a crisis should it arise.
Senator Pépin: Well, that is good.
Ms. Labrecque Duchesneau: And it works. I have gone through the entire province of Quebec and I can tell you that farming in the Montérégie region is not the same as it is in Abitibi.
Senator Pépin: Each region is different.
Ms. Labrecque Duchesneau: Each region has its own distinctiveness. If you look at New Brunswick, it is similar to Abitibi or to the Gaspé. I can make that type of distinction.
Senator Pépin: You said that in the newspapers, there is a focus on health. But in the La Terre de chez nous paper, are there articles for people in the regions on themes such as mental health?
Ms. Labrecque Duchesneau: I write them. I am a columnist for Terre de chez nous, because Au coeur des familles agricoles told the UPA, the Union des producteurs agricoles: look, producers read agricultural papers.
Senator Pépin: That is right.
Ms. Labrecque Duchesneau: I have raised awareness so the health care sector can do more, and that should happen.
Senator Pépin: In any case, you did state it was important for us to mention agricultural families as being one of our priorities.
Ms. Labrecque Duchesneau: Because they actually represent a large number of people. I would add that agricultural families have about four children on average.
Senator Pépin: Yes, that is right. I read that in your report.
Senator Pépin: I can assure you that your recommendations have drawn our attention. As Senator Keon mentioned, we will certainly be trying to respond to them adequately. I want to thank you for having given us this document.
[English]
Senator Trenholme Counsell: Michelle, I have raised this point with our committee that I thought perhaps the whole subject of autism was misplaced in a study on mental illness, because I do not think that autism is a mental illness. It seems to me that while you made a thorough and important presentation here at this committee, and I thank you for that, I believe you are in agreement with me?
Ms. Dawson: Yes, certainly, I did ask Senator Keon directly to remove autism from the work of this committee in these hearings. Autism is not a mental illness. The problem is that autism appears in your interim report, and I was trying to address the kinds of problems that are caused by that and by the widespread dissemination of the information that has been provided about autism in this committee. I addressed that, and I would certainly recommend that otherwise autism be outside the parameters of this report. The issues are tough, and you already have a lot of tough issues.
Senator Trenholme Counsell: Do you agree, then, that perhaps it will be something for the Senate to undertake independently? We should, of course, not ignore the subject, but perhaps it could be the subject of another inquiry or whatever, that it should not be —
Ms. Dawson: I would be very careful. I would be frightened at what would come out of an inquiry just now.
Senator Trenholme Counsell: I did not want you to leave here thinking that I, for one, was prepared to ignore it.
Ms. Dawson: The issue is getting a lot of attention, and I hope that the senators here realize that it has been said that autism is not getting any attention. That is not fair. I work in autism: not quite 24 hours a day, I do sleep a few times a week. There is a lot of attention given to autism. To have an inquiry, a lot of thinking would have to go in ahead of time, and a lot of timing.
Senator Trenholme Counsell: I thank you very much. I think yours has been one of the most important presentations we have heard on the subject, and we are grateful to you.
Ms. Dawson: Thank you for listening.
Senator Callbeck: Audrey, thank you for your good news story. You mentioned the people living in the housing are committed to taking their medication. What happens if they do not?
Ms. Bean: Well, if someone does not — and it has occasionally happened, although part of that weekly house meeting is to...
Senator Callbeck: Motivate them.
Ms. Bean: Yes, it is to motivate on that side. However, what happens often is that they end up in hospital.
Senator Callbeck: Okay, and then you take them back?
Ms. Bean: Yes, we do.
Senator Callbeck: You never put anybody out?
Ms. Bean: No, we occasionally have to ask somebody to leave if they have not respected the house rules, which are things such as no alcohol, and —
Senator Callbeck: Is it not a house rule to take your medicine?
Ms. Bean: It is, and yet it is a part of having a mental illness to want to not take your medication, when you feel well.
We keep the room. They pay for the room, anyway. It is not something that we donate. It is something they pay for, and therefore we keep it until they come back, yes.
[Translation]
Senator Gill: Ms. Dawson, I would like to ask you a few questions on autism. I do not know the situation well. Ignorance breeds fear, misunderstanding, et cetera. Can you tell me what my reaction should be when I hear about autism? First, is there an association? How should I perceive autism?
[English]
Ms. Dawson: One of my recommendations is that we need an accurate and unbiased source of information about autism in Canada. We do not have one. The organizations that say they represent us, represent autistic people, have not included us. They have mostly been autistic-free until just recently, when I forced the issue at Autism Society Canada. Still there is no meaningful participation of autistic people, and these autism groups have functioned in Canada like pressure groups. It is not a good place to inform yourself, necessarily, and so I suggested that there be some kind of comprehensive objective resource, so that you could go there and inform yourself. You would not be informing yourself of somebody's political opinion or of what lobbying efforts are going on. You would find out about who autistic people are and about what we need.
That is one of my recommendations, and your statement makes that need clear. We need a resource like that. We do not have one in Canada, and I think we could show leadership in this area.
The Deputy Chairman: Thank you all very much.
The committee adjourned.