Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology

Issue 9 - Evidence

OTTAWA, Wednesday, February 26, 2003

The Standing Senate Committee on Social Affairs, Science and Technology met this day at 3:55 p.m. to examine the state of the health care system in Canada

Senator Michael Kirby (Chairman) in the Chair.


The Chairman: This is the first session of the new health care study that the Standing Senate Committee on Social Affairs, Science and Technology is about to undertake. It will deal with the issue of mental illness and mental health. When we completed our major study of the health care system and released that final report last October, we said that there were a handful of health care issues that we felt, as a result of our earlier work, clearly needed greater in-depth study.

We named several of them, one of which was the issue of mental health and mental illness. When the committee met subsequently to decide which of the special studies we would do first, we rapidly reached the unanimous decision that we would begin with the issue of mental health and mental illness.

One of the things that struck us during our first set of hearings was that, to the extent that mental health issues arose it clearly was almost an orphan child of the health care system. It was always a peripheral issue; there was not any great degree of focus on it.

In thinking about how we would do this particular study, we decided to break it into two phases. You will recall that our original big health care study had six phases to it. What we hope to do between now and releasing a report, roughly in September or the beginning of October, will be to put together a fact base on the health care system in Canada with respect to mental health and mental illness. What are its costs? Who is affected by it? We will try to begin to put some facts, figures and a human face on the issue.

We therefore decided that one of the best ways to begin would be to invite four witnesses from different parts of the country who had experience, either themselves or in their immediate family, with mental health issues, in order to move from talking about mental health as an abstract concept to talking about an issue with which we can identify.

When we were deciding which special studies to undertake, I was struck by the fact that a majority of members of the committee have had experience in their immediate or slightly extended families with some form of mental illness. Therefore, in this study there is a huge degree of personal and emotional commitment by committee members.

I will do something that is somewhat unusual for a parliamentary committee. I will refer to the witnesses by their first names rather than their full names because some of them felt it would be easier to talk candidly about their situations if their full names did not appear in the media.

Therefore, senators, when asking questions of the members of the panel, please use their first names only even though you have been given a paper with everyone's full name on it.

We will begin with a witness from one extreme end of our country, that being David.

Thank you very much for coming.

David: I appreciate this opportunity to speak on behalf of Canadian people with autism. My 31-year-old son has autism, and I want to put a human face on autism by telling you a bit about our family experience. This is the first time I have ever done this. Two weeks ago, when I received the request to speak before you, I was told that you wanted to hear a personal story, and that is what I will tell you.

When I sent the notes of my remarks to my second son, who is a Ph.D. student here in Ottawa, he was quite surprised with the level of candour I was prepared to exhibit before the committee.

I will let it all hang out, and that is why I would rather that my identity not be disclosed. Mine is a very personal experience that bears deep personal values and issues. I am not sure whether this presentation will upset me or stabilize me.

My son is 31 years old. We did not know the extent of his disability until he was 15, which is quite unlike the situation with most people with autism. My son is not classically autistic. He is high functioning; he can speak; he can read; he graduated from high school. Most people with autism cannot speak. They are mute and quite often they are low functioning.

My son's ability to communicate is limited, which limits his ability to socialize and to work. He has never worked in his life, and his disability has had a profound impact upon his brother Andrew and upon my wife and myself. It was a big cause of concern for my parents and my wife's parents, all of who are deceased.

I want to start by telling you what autism is. It is a pervasive neurological disability that impacts upon communications, socialization, thinking and imagination. It clouds the ability to think; it clouds the imagination; and it makes it very difficult for people to socialize and to work. There are a number of co-morbidities associated with autism, some of them being gastrointestinal, mood instability, epilepsy, muteness, which is very common, and quite often mental retardation.

Autism comes in many different forms. One is known as Asperger's syndrome, which is high functioning autism. Rett syndrome is a form of autism that primarily affects females. People who think about autism tend to think of Dustin Hoffman's role in The Rainman. The character in The Rainman was a more high-functioning autistic because he could speak and he had an amazing ability with numbers. People who have an amazing ability with numbers are known as autistic savants. Some of them can do remarkable things, but this is not typical of autism. Only 1 per cent of the people with autism are autistic savants.

There are some well-known people with autism. One is Donna Williams, an Australian who has written a number of books, including Nobody Nowhere and Somebody Somewhere. She is a very articulate and high functioning person. Another such person is Temple Grandon, who has a Ph.D. in engineering and does complicated design work in her head. She is a very well-known speaker, but she is not typical either.

People with autism have a lot of sensory challenges. They are sensitive to light, to different sounds, to touch and to heat. When my son is in the car in the winter and it is cold, he will quite often open the windows and freeze everyone because he is hot. He is hot and takes off his coat while we are freezing to death. When my son is in the car in the daytime, he covers his eyes. He is very sensitive to light and it is very disturbing to him. He will lie back in the car with his eyes covered.

People with autism quite often display repetitive or ritualistic behaviour such as rocking, flapping of hands and systematic arrangement of objects. They are quite often preoccupied with things.

Many people with autism are severely retarded, although about 25 per cent have normal or above normal intelligence. One-third to one-half of people with autism have no speech, they are mute. A non-verbal, severely retarded person with autism may repeatedly bang his head, lash out or scream in frustration. The reason they scream is because it is impossible for them to communicate with other people. It is their frustration that breaks out in bad behaviour. People with autism get extremely angry; they break things; they tear light fixtures out of the wall; they break windows. It is the restricted ability to communicate that is the core and single most handicapping aspect of autism.

Autism is considered to be the most severe of the developmental disorders. Usually it shows up at two-to-three years of age, but in my son's case it did not show up until he was 15.

People with autism have a normal lifespan. Their disability does not in any way inhibit their physical well-being, unless they have a co-morbidity such as epilepsy, which may have the effect of reducing their lifespan.

Autism is four times more common in males than in females. Most people with autism require some care or supervision throughout their lives.

The most effective treatment for people with autism is given when they are between the ages of three and five. It is called ``applied behavioural analysis'' and it is associated with Dr. Ivar Lovas of the University of California. This process requires one-on-one therapy. The cost is $40,000 to $60,000 a year, and ten years ago this was not available. It was not available when my son was young. It is now being made available by a number of provinces, only because of legal challenges being made by parents who have had to fight for this kind of treatment.

Parents of people with autism are forced to lobby for services. The services are not available as a matter of right, so parents have to become advocates. Parents of children with cancer do not have to do this. They do not have to become experts in cancer research and cancer therapy, but parents of children with autism do. They have to know what is the best practice. They have to research the medical journals. My wife researched medical journals before we found out that our child had autism. There are a number of treatments, although none of them as effective as applied behavioural therapy, that are helpful to some people. For some people, mega-vitamin therapy is helpful.

For many who have gastrointestinal problems, the removal of gluten from bread and the removal of casein from milk are beneficial, and for those low functioning people with autism who are banging their heads against the wall and are abusing themselves, removal of those ingredients is extremely beneficial. People with acutely sensitive hearing can benefit from an auditory treatment. The auditory treatment improves the quality of life, but it is not a cure. There is no cure.

Parents of children with autism have to fight the system. They have to fight the system for special services. They have to demonstrate that their child is incredibly handicapped. They have to exaggerate the seriousness of the disability.

The incidence of autism has been increasing. In some areas such as California, the incidence has reached epidemic proportions. A recent study concluded that the increasing incidence is not a statistical phenomena; it is real. In the United Kingdom, they come up with a figure of one in 100. That figure includes all of the forms of autism, from the low functioning to the high functioning, including classic autism and Asperger Syndrome.

The figure that we are using in Canada now is one in 385, which is the number coming out of the Canadian school population. The Center for Disease Control in Atlanta uses an incidence rate of one in 500. Autism Society Canada's estimate is that there are 100,000 people in Canada with autism today.

My son, Adam, had problems in making friends when he was a young boy. We did not know he was autistic. He did not show autistic symptoms when he was two or three, which is when most people demonstrate their autistic tendencies. We did note he was aggressive, particularly towards strangers, and particularly aggressive toward the friends that his brother Andrew would bring home. People with autism do not like changes. They are resistant to change.

We sensed that school was becoming more stressful for Adam as he became older. When he became 15 years of age, he refused to go to school. Other children gave him a hard time. They made fun of him, and he found recess time to be extremely stressful. He became very agitated and angry. He would go out for walks and would return in a burning rage. He would get so angry that he would break windows and pull out light fixtures in our homes.

We had no choice but to have him taken to a hospital, where he was admitted and diagnosed incorrectly with bipolar disorder. That was because our medical system did not have the capacity to diagnose autism at the time. It is not much better today. It soon became clear that this diagnosis was not accurate. The children's hospital sedated Adam with medication but did not do anything to resolve his basic problems.

We have gone through a number of traumatic experiences. One was the night we had a call at two o'clock in the morning to tell us that Adam had left the hospital. He had jumped through the window onto the roof and then taken a ladder down onto the ground outside the hospital. By the time we got to the hospital Adam had been found by the police and was being treated for hypothermia. He never explained why he had taken such drastic action to jump out the window and climb out and run on the loose in his pyjamas in the middle of the night, but he frequently expressed his anger at us for putting him in hospital. Later, in his anger, he would pull out light fixtures. He became so aggressive and out of control that at one point we had to have him hospitalized in an adult psychiatric hospital, which was quite inappropriate for him but that was the only option available because it was only the adult psychiatric hospital that had the ability to control his access and to keep him restrained.

While he was in the psychiatric hospital, there were a number of medications prescribed. Some of them helped him function. His hospital stay was very tough on us. At one point, the misdiagnosis was so egregious that the social worker felt that the problem with Adam was that we were a dysfunctional family. We were put into a room with one- way mirrors and we subjected to family therapy, which was totally inappropriate. When I look back on that, I get very angry. This reflects the ineptitude of the system with which we were dealing.

Medical practitioners regarded Adam as a puzzle. Psychiatrists did not consider autism to be a possible diagnosis. When he returned from hospital to high school, he did so with medication, but he was under a lot of stress. He could not sleep, so he would keep us awake all through the night. We would be awake trying to sedate him, to make him relax. The medication sometimes did not work. He would become suicidal. He would scream out, ``Why don't you kill me? I want to die.'' He said that so many times that it is burned into my imagination.

There was one episode where he attempted to jump through a bedroom window in our house, but there were three panes of glass and he could not get through all three of them. There was one occasion when I was about to take an international business trip. It was a Sunday morning, and my son was screaming out at my wife, ``Why don't you kill me? Why don't you kill me?'' I had to cancel the trip.

My son went back to school. He had been in hospital for six months, but he was discharged and in school. Things were looking pretty good. The kids were going on a school expedition to Athens, Greece, for ten days. With the advice of our doctor, our psychiatrist, who was a really good guy, we decided to take the risk. We went to the airport, with great fear and trepidation, and put him on an airplane. He was very tight-lipped at the time and very apprehensive. Two days later, we got a phone call from the teacher saying, ``Your son is threatening to commit suicide. On the transatlantic flight, he was screaming and yelling, and now he is saying that he wants to commit suicide. He will commit suicide. You have to come and get him.'' Over the course of the next few days, we had the psychiatrist talk to the teachers to try to manage the situation, but that did not work out, so we ended up going to the travel agency and forking out $10,000, which we did not have, to buy tickets to go to Athens.

We had our son discharged from the hospital in just outside of Athens. One of the benefits of that experience was that the Greek psychiatrist put him on a medication, Stelazine, on which he remained for two years, and that was beneficial because it helped him to think.

Up to this point in time, we had not received a concrete diagnosis for Adam. After his hospitalization, it was suggested by an adolescent counsellor that a mild variety of autism could be the problem. We investigated the literature in this area. We read the medical journals, and we came to the conclusion that autism was the problem. The psychiatrist at the time did not concur with this. Other professionals, such as a speech language pathologist, did. We reached a point where Adam became so reluctant to see doctors that we never did get a formal diagnosis.

Adam did finish high school after being discharged from hospital. He was one of two people in his high school to get top marks in a scholarship examination. He did win a university entrance scholarship, but he could not cope with the stress of university. My wife would pick him up in her car outside the university, and he was so coiled up with stress and energy that he would turn into a ball, and when he straightened out his feet went through the windshield of the car and the windshield popped out. We lost three windshields that way. He ended up back in hospital, but he did write his math exam and got an A in his exam. Then he withdrew from the university because he could not cope with the stress.

The next year he enrolled in two courses only. He was interested in classical languages. He enrolled in Latin and Greek. He was doing very well, and we were excited. Adam liked to talk to other students about the course material. He would really talk a lot to other students and to the teacher. One student misinterpreted this and accused him of stalking her. She tried to have him removed from the class. Although she appeared to have her own problems, the university-counselling centre advised Adam to ignore her. He was unable to do so, and the result was that he gave up university.

That was ten years ago. He has been at home in his room for ten years. He refused to see any more doctors or take any medication or enter any programs. He appeared to have decided to retreat from the outside world. He spent the last ten years, with no friends, in his room, no employment, no structure in his life, no purpose for living.

When he was in high school, he was interested in computers. In fact, at that time, he was ahead of other students, but now he has fallen behind. Last September, he decided to enrol in a computer course at the university. My wife has to drive him to courses, but he did stay in this one course all through last term.

He scored 92 per cent in the final exam. This term, he is taking two courses and we are cautiously optimistic.

My wife quit her job with the federal government when we got married in 1970. I was teaching economics at a university at the time. When our children came along, she stayed home with our kids, until the youngest was ten years old. She then articled to become a chartered accountant and she practiced for a short period, before the enormous problems we had with Adam forced her to withdraw from the labour force.

Since then we have reverted to being a one-income family. Janet has become a dedicated volunteer. Both of us spend a lot of our time working on behalf of our son and other people with autism.

Up to the point when our problems escalated out of control, we used to entertain friends and associates in our home. We would have them into our home for dinner. We used to reciprocate invitations. We found inviting strangers into our house was hard on both Adam and us. He did not want strangers visiting with us. He has been known to go into the kitchen when my wife has been baking and dump everything on to the floor. That makes it difficult to prepare dinner.

The result is, we hardly ever had friends in for dinner. We do not invite them and they do not invite us. Home is not necessarily a haven when living with a person with autism. This is the price we pay for having a child with autism. Having a family member with autism is a lonely, traumatic experience. There is nowhere to go for help when your medical practitioners, psychiatrists and psychologists do not know anything about autism. That was the situation we found ourselves in 17 years ago. Things are now a little better.

Autism is worse than cancer in many ways, because the person with autism has a normal lifespan. The problem is with you for a lifetime. The problem is with you seven days a week, 24 hours a day, for the rest of your life. My wife and I expect to have responsibility for Adam until we die. We lose sleep over what will become of him after we are deceased. Our financial resources are depleted, so our ability to provide for him is limited.

Adam has no friends. His brother works hard to build a relationship with him and to be his friend but Adam is more than a little paranoid about his brother's success. His brother is a Ph.D. student. Adam did have one friend when he was in school, but he allowed that friendship to die.

The problem with autism is that the family has to bear the full burden of responsibility, financially, emotionally and in every other way. Our family is bearing the full burden of this disability. We receive no help financially or medically. Because our son is high-functioning, government requires that he apply for support, sign the documents, and that, when the government decides that there is a renewal required for the application, Adam has to fill this out.

He does not do it. We did have him on a small income support payment, but he was required to reapply. He delayed and he has now been cut off. He does not have the skills required to maintain access to support, but he is too high- functioning to have us appointed as his guardians to act on his behalf. We cannot go on vacation unless Adam's brother is at home. As I mentioned, he is a student at university and is unlikely to be spending much time at home in the future.

What are the conclusions from this personal experience? First, there is a lack of medical personnel to diagnose and treat people with autism. Adam was misdiagnosed, and our family went through hell as a result. We did not know what we were dealing with and nobody understood autism. This is particularly true for older people with autism.

There is an urgent need for health professionals to be educated with respect to autism. We are working with professional groups, and we are delighted to hear that the executive director of Canadian Psychological Association is with us today. That association is organizing a workshop on autism to take place at their annual general meeting this June. They are bringing one of the foremost experts in autism, Susan Bryson. She will be conducting that workshop. We in the autism community are delighted with this initiative by the Canadian Psychological Association. I would have said that, even if the executive director of the CPA were not in the room. I did not know he was going to be here.

There are no services for adults with autism, except respite services for those who are lower functioning. Respite means babysitting, and the people who do respite work are paid minimum wage. After school, there is no structure in the life with a person with autism; there is just an abyss. The prospect of employment is remote without a lot of help, and the family has to shoulder the full burden. In the province where I live, our society is working to build a provincial autism centre. We have had a lot of help from private benefactors and the rotary club, of which I am a member. We have also been successful in securing a site from a local university, which is located close to the medical school and to the hospital.

Our society has also engaged our local health research unit to examine services available for adults with autism. We are hopeful that this study will lay the function for a provincial plan for services for adults with autism.

There is little understanding of mental disabilities, and many people are not prepared to make allowances for unusual or exceptional people. This is the problem of the stigma. We need to do a lot more to educate people concerning autism and other disorders, because the stigma is still with us.

There is a desperate need for more research into the causes of autism and into effective treatment. Autism Society Canada recently held a workshop in Toronto to bring funding agencies, such as the Canadian Institutes of Health Research, together with parents of people with autism and researchers. We were very successful in defining priorities for autism research in the future.

Autism has to be recognized as a medical condition, which deserves more national attention. It is unfair to place the full burden of responsibility on parents and other caregivers. Autism has to be recognized as a major medical problem for which both conventional and unconventional therapies must be more readily available. These treatments must be available as an entitlement, or as a right of a citizen of Canada. People with autism and their parents ought not to be forced to beg or to threaten in order to obtain care, which is what has happened.

In our community, there was a transportation allowance for very low-functioning student to be taken to school. That persons' father decided that the only way to have that transportation allowance reinstated was to sit in office of the Minister of Education. The minister of the day was a man by the name of Roger Grimes and this parent sat in Roger Grimes's office until the service was reinstated, which it was. That is the kind of action that parents have to take. You have to be aggressive. If you are not aggressive, your child will suffer.

I want to thank this committee for giving me the opportunity to make this presentation. I am delighted that your committee has chosen mental illness for this intensive review.

I also want to recognize the good work of the Canadian Alliance for Mental Illness and Mental Health. I support the work of the alliance. I support the need for a national action plan and a national policy framework that includes research, continuing education for practitioners, along with adequate and sustained funding.

Autism is not a children's disorder. I notice, on page 4 of the document that was distributed earlier, that there was a reference to autism as a children's disorder. It is typically diagnosed when people are young. Schizophrenia, I think, is diagnosed when people are older. However, the thing about autism is that it does not disappear when people become older. It is not a childhood disorder. It is a childhood disorder, an adolescent disorder and an adult disorder.

I thank you very much again for this opportunity.

The Chairman: Thank you very much, David. I will say to the committee, if we already had any doubt about the fact that the whole issue of mental illness and mental health is an issue that clearly needs to be look at, you certainly eliminated any doubt. That is a very awesome presentation. Thank you very much.

Our second witness today is Murray.

Murray: Before I begin, I would like to thank the committee for the opportunity to speak. It is a rare opportunity to speak about special institutional interests.

Over three years ago, our son was diagnosed with paranoid schizophrenia. On May 28, 2002, while a patient at the Royal Ottawa Hospital, he left the grounds and found his way onto the Queensway where he was struck and killed by a city bus deadheading back to the terminal at 100 kilometres an hour.

It was not the first time that he had fled from the hospital, nor was he the only person to have done so and come into unhappy circumstances. His judgment and motor skills were severely impaired by the illness at the time. Post-mortem tests confirmed there was no alcohol, no street drugs and, most important, no prescribed medication in his system at the time. His death was judged accidental by the Ontario coroner's office and an inquest was not considered necessary.

Before the onset of his illness, approximately six years ago, our son was an honours student, played in the school band and toured Canada and the United States as a member of it, was a first division soccer player, had many good friends and a wonderful, long-term girlfriend, and was a soul mate to his younger sister. In short, he had just about everything going for him.

Things gradually started to go horribly wrong as he descended into the abyss of slow onset paranoid schizophrenia, the mental health care system and social services system. He is survived by an older brother and a younger sister. Our daughter was in high school and living at home during the illness onset and progress into repeated psychotic episodes. Our older son was nearing the end of his engineering studies during the early phases of the illness. He graduated, found employment, and moved into his own apartment. My wife and I both have to work to support our family.

There are many degrees of schizophrenia. Seven or eight degrees have been determined and they continue to count as the research progresses. Our son's case was of the particularly severe kind, and there are quite a number of paranoid schizophrenics across Canada.

The disease produces severe cognitive executive disorganized behaviour and social disabilities. In understandable terms, the real and imaginary become the same over time and are inseparable. Brain chemistry ceases to function properly. Most people with schizophrenia are anosognosic; they do not think they are sick and they do not need anyone's help. Diet and hygiene deteriorate, behaviour becomes abhorrent and erratic, and interaction with the real world and real people produces paranoid beliefs and extreme withdrawal. The struggle is constant, with tormenters who are very real people to them. Sensory inputs are greatly magnified and distorted. Hallucinations are not uncommon. Defensive or offensive outbursts are often violent in nature and oftentimes life-threatening. Emanating from the imaginary, they are often not predictable. Stress and unfamiliar surroundings trigger magnify psychotic episodes. Rational thought is impaired to the extent that normal functioning is not possible.

Long before any episode progresses to this point, they are a danger to themselves and others. They lack any semblance of capacity to make decisions and require 24-hour-a-day supervision and support. Victims of the disease endure intense suffering and have limited opportunity for any meaningful recovery from the disease through the mental health care system.

I want to preface my next remarks to ensure that nothing is understood. No matter how bad things became, and as sick as he was, he did everything he could possibly do to deal with the horror of this disease. No matter how black it became or impossible it was to cope, he kept trying and never gave up.

Invariably, when things really went wrong it was because we could not access the health care system in a timely fashion for reasons of lack of beds, emphasis on community treatment, a missed opportunity for him to go in voluntarily, or shortage of staff and insecure facilities. It seemed impossible to circumvent a crisis. The system only responded to the crisis and only after weeks of drug rebounding, deterioration and many family pleadings and warnings to caregivers. Not once during the many times he was discharged from hospital was he discharged in a stable condition with insight and compliance with medication.

As a consequence, he had unpredictable behaviour, outbursts of frustration and violent behaviour at any time of the day or night. This severely traumatized family members. We feared physical injury to our son and to family members, even while sleeping. We slept in shifts. The physical damage to our home was extensive and costly.

I could relate a number of stories about him breaking something in the course of dealing with his difficulties, feeling horrible about it, trying to repair it only to complicate the issue. For example, he placed two pieces of glass that he had broken onto a piece of plexiglass and placed that into the oven to try to melt the glass back together. Of course, the plexiglass ignited and the house nearly burned down. It was lucky that I was at home and that we had a fire extinguisher and access to a garden hose. He was trying very hard to make amends, so I do not want that story to diminish his memory.

Even when he was in the hospital there were serious problems to deal with: the failure to obtain service, preparation for certification hearings, doctors meetings, visits to hospitals, Ontario Disability Support Program filings, researching medication and treatment, attendance at support groups, and unsettling telephone calls from our hospitalized son. We worried about his possible flight from the hospital and feared the possibility of long-term brain damage due to the use of inappropriate medications. These fears created high levels of stress over the years combined to result in mental and physical exhaustion, and worse.

There was no such thing as a social life. We could not take him with us because he could not tolerate elevated levels of sensory input for any length of time. We could not leave him at home and a sitter was out of the question.

The pain and suffering of my son's siblings included the loss of an entire university year, the trauma of police incursions into our home and the fear of their brother being injured or killed by police during numerous forced hospitalizations. Our daughter lost a soul mate and our surviving son will spend the rest of his life without his much beloved brother.

This illness has income impacts as well. It limited our opportunity to earn a living. I lost business income and was fired by my employer due to low production. I managed only to maintain my existing client base. I could not gain new clients for three years. I often could not keep planned appointments as I could not leave the house when my son was at home. I was fearful of arranging appointments in the evenings because I would have to leave my wife and daughter at home alone with my son. There was a high burn rate of our savings.

The consequences of cutbacks include the cost of community treatment, no insight medication, no stabilization of medication, no adequate long-term care facilities and inadequate hospital treatment.

My wife has provided a list of questions that point to areas that should be explored.

What sense does it make when a person with mental illness is shuffled among eight different psychiatrists in two- and-a-half years? The consequence is great anxiety for the patient and family, not knowing what the treatment plan will be and if the patient can develop a rapport with the doctor. It does harm to the patient and the family.

What sense does it make to have the emergency room in a totally different site from where the patient gets treatment, especially when this is not the first hospital visit and new records need to be established? The consequence is great anxiety and unnecessary dirty drug medication, leading to distrust and a longer recovery. It does harm to the patient.

What sense does it make that there are so few staff on the wards that, at times, you cannot even find your son? What sense does it make when many studies agree that the psychosocial aspect is important to improved functioning? The psychologists in this case are not covered by OHIP unless a psychiatrist refers you. They do not seem to want to refer you, or recommend them, seeming to prefer to rely on meds only.

What sense does it make that staff are so busy due to the lack of numbers that they cannot keep the patient safe? What sense does it make to leave two people with mental illness in the same room, especially ones with schizophrenia, who are already hearing voices or have extremely enhanced sensory inputs?

This is not a climate for recovery. At the Royal Ottawa Hospital, sometimes they have two or three in the same room; and in the forensic units, they are even higher. I remember reading somewhere that a member of the board once referred to the facilities at the Royal Ottawa as ``the bleak house,'' and that is a member of the board.

My understanding is that both federal and provincial health dollars are to be spent on the health of all Canadians. Why is it that the most vocal and strongest lobby groups get the most money? We have statistics that we can provide on that subject. Meanwhile, these vulnerable people cannot speak for themselves and are left by the wayside. There are no political points to be made in spending money on these groups.

Canadians who are directly affected by the disease are immeasurably impacted by the failure of the health system to put them on at least an equal footing with other patients.

What sense does it make when there are many guidelines to determine if your family member has heart disease, depression, diabetes and so on, but there are no guidelines to tell if somebody is suffering from schizophrenia? The schools simply assume there is a drug problem and this leads to long lags in the treatment. Early treatment is critical.

What sense does it make that Mark died in the care of the hospital in the first place? In the second place, the coroner had absolutely no recommendations to offer. This does not make sense to me. I wish someone could explain to me what the health system is for if these questions cannot be satisfactorily answered.

Why is it that the medical profession is not allowed to share information with family members when it has been shown that family support is beneficial to the patient? The patient is on meds because his thinking is affected; yet the medical profession believes that sharing information with a family member must be a decision of the patient, who cannot make a reasonable or thoughtful decision.

People with schizophrenia are still treated like people with cancer were treated long ago, as if it were a moral disease instead of a physical one. When is the government going to encourage thinking outside the box instead of relying so heavily on the pharmaceutical companies to do the research? They have no stake at all in discovering what triggers the disease since this would cut into their profits.

This leads directly into the issue of homelessness and crime, which should be self-evident by now. It also leads into the issue of lack of housing. Quite frankly, we have seen some of the homes and they are not fit for a dog. When we asked where the young people were, it was not surprising to hear that they had left or run away.

All these issues impact directly on families, as they are left with no hope that the patient's needs will be met. I also have a list of summary issues. I could go through them or provide them at a later time.

I would like to thank members of the committee for listening to me. My delivery was perhaps punctuated by a little concern in a number of places. Things are still raw.

The Chairman: Thank you very much for coming. We appreciate how difficult that was for you. However, in terms of painting us a picture of why we are doing this study, and the kind of people we would like to help, I think that it was superb. We would like to get the set of questions from you at the end of the session.


Loïse: I am 58 years old, and I live with mental health problems. I have bipolar or manic-depressive disorder. I would like to thank you for inviting me here today because I believe it is time to ask the opinion of service users and mental health experts. And who else but us are the experts in our disorders, needs and problems?

We obviously cannot cure ourselves. We are people with a certain ability to think. We need to be heard, and I thank you for doing that.

Ten years ago, following the sudden death of my partner in life, I had an episode of manic psychosis. During that phase, you lie, you spend money, and you are sure you have money, and you believe what you're doing, which is out of context. You feel you could save the world during that period. I had a episode which lasted six months and ended with a suicide attempt. That was followed by four years of depression.

At the emergency department of the hospital where I was taken, it was recommended that I go to a crisis centre. That was the start of nine years of unfailing support from community organizations and four years of continuous fighting to obtain the necessary psychological and pharmaceutical assistance from institutions and psychiatrists.

For years, I had to tell and repeat my life story to the following persons: an emergency nurse, the emergency psychiatrist, a medical assessor at the crisis centre, a psychosocial worker at that centre — they talked about my life history and constantly went back to the traumas, the painful things, and each time I had to start all over from scratch — a psychiatrist at the hospital crisis centre, a social worker at the hospital, an intake officer at the CLSC, a CLSC caseworker, a psychosocial worker at the CLSC and the CLSC family physician. It was extremely painful, and I'm still depressed. I don't know how I managed to go on. There were also an assessing psychiatrist on duty at the hospital, six different psychiatric nurses and four different psychiatrists at the outpatient clinic — because they often change — a psychiatrist specializing in mood disorders who had a therapy group, a psychiatrist and three residents, whom she was training at the mood disorder clinic — and, lastly, three years ago, a psychiatrist who is still monitoring me and with whom I feel I have a privileged relationship. During all that time, I was allergic to lithium.

There is a false notion that, when you are manic depressive, you need only take lithium and that stabilizes you, that you can continue to work and live. It's not true for everyone.

I know people who are functional for part of the year, but not during the period when they are depressed. It stabilizes, but it doesn't stop the symptoms and it's often paralyzing.

In addition, five years ago, I was diagnosed with fibromyalgia, and that does not help my situation a lot. I found my new job. Those various doctors had me try nine different combinations of stabilizers and anti-depressants. They were all ineffective and caused uncomfortable and occasionally even painful secondary effects. Three years ago, they found a combination that, although it has not cured me, nevertheless enables me to manage my depressive episodes. I still have some of those episodes, and, since the pain doesn't help, they are sometimes more difficult. What was very important for me was that I retained a certain degree of intellectual acuity.

With the energy I still have, I have decided to get involved at the community and advisory level on the city's regional health board. If I had not had the community services, I would not be here to speak with you today.

Yes, the institutions eventually helped me, the psychiatrists too, but they could also have killed me by making me relive the awful traumas I had to face. The duplication, rigid parameters and problems of approach at the institutional level must expand, and they have to work with the community agencies to help the users of those services find the help they need. If it weren't for the support of those agencies working in the mental health field, despite severe budget constraints, and my unfailing instinct for survival, I wouldn't be here today.

The deep and persistent prejudices that still exist in our society must be addressed on an urgent basis either through media campaigns or by other means.

Since being diagnosed with my disease, I have lost the esteem of some members of my family. I have had to fight that, and many people have had to do that as well. In this community, I have found extraordinary, courageous, intelligent, creative and imaginative people, full of compassion and empathy and with a sense of humour as well. I hope that the work I am doing will help me to bring them together.


The Chairman: Thank you, Loïse, for attending today. I appreciate your comments. Our final witness is Ronald.


Ronald: My wife has schizophrenia. At first, it wasn't easy. I do not even know when it started, definitely at the start of our marriage. They say everyone has this disease, but that it takes some kind of stress to trigger it.

The initial stress on my wife was probably our marriage. How do you explain that? That makes people laugh, it is true, but there were no schizophrenic episodes at that time, but there was initially a great deal of anxiety. I remember, at the start of our marriage, we went to see therapists and we were monitored, so much so that I felt I was suffering from the symptoms of a newly married man who didn't know how to deal with it. Things continued to progress and the first crises hit, hallucinations and religious delusions.

I was married in 1959, and the first disorders began in the 1970s. We already had three children. The first two did not suffer from this because, to a certain degree, they had already accepted the disease and because I had not left my wife.

I had no idea what was going on. I was not familiar with mental illness. I met with people, I went to see one person and I told him: ``You're the last person I've consulted, and, if you tell me I have to leave her because that's the best way for her to turn her life around, I'll do it.'' That person answered me that that was the best way to ensure she would commit suicide. I have accepted my decision to stay with her, for better or for worse.

At the time, my wife didn't want to be hospitalized because, in her mind, there was no disease. She was not ill. Since the disease did not exist, I had to find a way to have her hospitalized.

At that point, I was hospitalized with arthrosis. I spoke about the matter with my attending physician, who told me: ``There's definitely something wrong with your wife; you should have her examined.'' But that required papers from two psychiatrists. The attending physician undertook to find two psychiatrists who would sign the papers and have her hospitalized.

Once the papers were signed by the two psychiatrists, she didn't want to go to the hospital. I told her: ``You go to the hospital on your own, or the police will come and get you.'' I had to go get a piece of paper from the judge, and she agreed to be hospitalized.

She was hospitalized for three months and attempted suicide a number of times. Someone stayed in her room 24 hours a day for three months to prevent her from committing suicide. Lastly, she left the hospital under medication. At that time, she was taking neuroleptics and anti-psychotics. The crises gradually disappeared completely. The positive side of the disease, that is to say the hallucinations, religious delusions and so on, disappeared. But what appeared at that point, and what the drugs don't work on, was the negative side of the disease, that is to say the social side, the lack of self-confidence and personal hygiene, the feeling she had that she was worthless and that she was absolutely incapable of succeeding at anything, and so on. It's so subtle because she believes she's good for nothing and a failure; she also can't accept anyone loving her or telling her that she's good and able to succeed; that would be betraying what she actually believes.

She definitely let herself go. And through all that, we lost our friends and no longer had any social life, love life or sex life. Ultimately, we no longer had anything.

As a remedy for all that, I went into volunteer work. I went into the Canadian Mental Health Association and told the person there that I needed someone to listen to me. That took half a day, and I told them about my case. There was nothing else to do. I decided to go into volunteer work. At the Canadian Association, I was told that there were four or five individuals who were trying to establish an organization to help people living with persons suffering from mental illness. That was Compass. There were four of us, and we met once a week or once a month at that point. We invited a speaker, who told us about mental disease and tried to explain it to us.

A person from Compass told us at one point that the best way to help relatives is to set up an organization to take care of people suffering from mental illness.

That was the start of the organization Le Pavois, which I work for. It's first of all an organization that strives to achieve social reintegration through work, rehabilitation through work. At Le Pavois, people resocialize through office workshops and cooking workshops. Once they have been succeeded at that, integration officers go and visit employers and try to find them internships and jobs.

It is relatively easy to find them internships. Employers agree to them because they feel that, if they find someone who works out, they can hire him afterwards. But, at the end of the internship, they don't want to pay and don't hire them. These people aren't interested in working for nothing, and they come back to Le Pavois.

To correct this deficiency, we have established our own businesses. We started with a second-hand clothing store. We knew it wouldn't be profitable, but it would provide people with work. The second-hand clothing store has turnover of $40,000 to $50,000 a year and employs 18 to 20 persons. These people are still receiving welfare, to which they are entitled by law to add $100 a month. Absenteeism was enormous at the start, but has declined sharply because people like working at this place.

The government asked us to take over a cafeteria at the provincial health and social service centre. We accepted. We obviously still have to hire a professional to supervise our mental patients. We have a cook who supervises people, and that has been working for three years now and is going very well. We started up a photocopying company, which does reprography, computer graphics and printing and deals directly with the public. We have an established business and turnover is currently $200,000 a year. That's not profits, but it's employing roughly 20 persons.

These social businesses are an intermediate step enabling our members to move from Le Pavois to the actual labour market. We have realized that it is far too stressful for them to go directly into the labour market. Most are incapable of returning to the labour market.

At Le Pavois, if someone comes to us and says he does not feel well and has to go and lie down, we let him do it. Right now, perhaps three, four or five percent are in the labour market and some are doing very well.

With regard to intelligence, they are as intelligent as us, if not much more so. It's in emotional terms that they're less well-off.

At home, my wife's disease and symptoms have disappeared. The psychiatrist sees my wife once every six months, but things aren't better. The entire negative side of the disease has worsened. Now she hardly ever gets dressed, she has no initiative and she is interested in nothing. She registers for courses in literature and painting, but always drops out. She comes home discouraged.

The children do not come to the house because they cannot cope with the situation. It is too hard for them. In addition, at first, the psychiatrist signed a letter for me giving me a tax exemption, but the second one did not do that, and I am no longer entitled to the tax break. That is hard to take. Everyone thinks she's doing well because there's no obvious sign in her everyday life, except for her physical appearance.

I have brought a few Le Pavois folders with me in the hope that that will continue to produce results. Funding is still a problem. We started out with 12 members in a substandard building, with a minuscule grant of $12,000 from the Health Department. Today we have 600 members and a budget of $600,000, which represents approximately $1,000 per member, or three hospitalization days. Our entire budget is goes to overhead and payroll.

I consider this a phenomenal success. One of the patients who works at Le Pavois will do a reprography job; it will take him 45 minutes just to program the machine, and, once that is finished, the work is done automatically. That patient is even able to manage other members who work with him.

Lastly, we ha've opened two service points, one in Sainte-Foy and the other in Loretteville, but $30,000 is scarcely enough to pay the person in charge.


The Chairman: I would thank the panel members for their incredible cross-section of stories. You have certainly given the committee all the motivation in the world to undertake this study.

Senator LeBreton: Listening to each of you, there is very little we can ask that can possibly enlarge on the stories you have shared with us. The stigma that each of you talked about is something with which you have had to live.

David, you talked about your son and his condition not being recognized until he was 15 years of age. You also told us that the best treatment period is between ages three and five. Have you ever thought that, had his condition been recognized at that point in his life, it could have drastically changed the path of his life? What should have been in place that would have helped you recognize his problem earlier? You indicated there were some early signs, but that you did not recognize them until later. What can be done to improve the possibility of early recognition? Is it that too simplistic?

David: At that time, there was very little understanding of autism in our community, so there were no resources that we could access. Our son was different in the sense that he was not classically autistic. Even if he were born today, he would not have been immediately recognized as having autistic symptoms because he did not portray all of the most common symptoms of autism. He could speak. There seemed to be no physical impairment of his speech.

Had we known what we were dealing with, we would not have wasted so much time. We wasted a large part of his life. I am schizophrenic in my answer to this one. I asked my wife, ``Would we have been better off if we had known what we were dealing with?'' At one point, we both agreed that we would not have tried so hard. If we had known our son had a disability, we might not have pushed him so hard, because we did push him. We pushed him to the point where we endangered our health. Much of the stress that came out in his physical violence was, to a large extent, because we were pushing him to do things. That created a situation where we were living in a very dangerous environment in our home. We worried about fires and other dangerous situations. We pushed out the envelope really hard. That is one side of it.

The other side is that, had we known what we were dealing with, we would not have wasted all of this time with family therapy and medications that were more appropriate for people with bipolar disorder. We would have taken a much more intelligent approach to trying to come to grips with our son's problem. We would have sought good advice on how to deal with the problem. The fundamental problem was one of communication.

To be honest with you, we thought we had a recalcitrant child. We had a person we could not deal with, so it became physical. I reprimanded my son, and I never had to do this with my second son. It became very physical. We had a lot of physical encounters that were very unpleasant and served no purpose. There was anger — my anger, my wife's anger. I think things would have been much different if we had had an idea of what we were dealing with. Knowledge means power. We did not have any knowledge, so we were impotent.

Senator LeBreton: Is it any better now? If he were born today, even though you say you might not have recognized it, are we better equipped to recognize some of these things?

David: We are light years ahead of where we were 15 years ago, but we have a long way to go. The people that provide care have a lot to learn, and the key things I would stress are, number one, education, and number two, research.

Senator LeBreton: Murray, I remember the tragedy of your son. You talked about the lack of accessibility to proper treatment. You mentioned that upon discharge, there was no proper follow-up. When I was listening to you, I thought you described a very compelling situation.

Was the onus completely on you and your family? Was there any follow-up from the hospital? Once you were out the door, were you forgotten about and it was up to you? People who have heart disease or cancer are called regularly to come in. Were you left pretty well on our own?

Murray: I will answer by relating what happened to us when we reached a decision to encourage our son to go in for his first meeting. We had already concluded that there was something very wrong. He was demonstrating strange, erratic behaviour. He was doing unusual mental things. We knew that he had already lost most of his friends. We reached a point where we encouraged him to go into the hospital. We said, ``Listen, maybe there is something physically very wrong with you.'' By that time, he had a long beard, shaved head, a Bible, a drum pad under an arm and a knapsack on his back. He voluntarily went to emergency.

Our experience at the hospital was this: We sat in the waiting room with this individual, and everyone gawking — a wink, wink from the triage nurse. After a long wait, we were ushered into a waiting room, a small examination room, five by eight or whatever, the three of us. There we waited for another hour while the duty psychiatrist was summoned and arrived from somewhere in out of town.

He arrived and asked our son a total of eight or nine questions. He then told him he had schizophrenia and that he should be in the hospital. Unfortunately, there were no beds available, and he could canvass the region to see if there were beds available in the region. He said that would take a lot more time. By this time, my son, because of all the input, was beginning to badly lose his composure and ability to control his anger, so he said no. It turned out later there was not a bed available in the entire region. The doctor then wrote out a $400 prescription for an anti-psychotic and said, ``Here, take this to the drugstore, and take him home.'' Of course, we were back at emergency a week later. He did not take the medication.

You are quite correct that you are on your own. You do your own research. I have gigs of information on the subject on my computers. We had to go do the ODSP thing. It was a brutal process. You are always fearful that you will be kicked off the ODSP. If any of you would like to have an enlightening experience, visit their offices here in Ottawa. When you step off the elevator, you will be faced with panoply of Plexiglas, because I think they are concerned for their safety there.

You have to find your social worker. You have to get the support payments going. You have to take a seriously delusional individual to a bank. You can spend an hour in a parking lot waiting for your son to deal with the voices or the sensory inputs before you can take him into the bank so that they can have him sign the document so that you can open the bank account so that you can administer the funds when they do come.

It was very hard for him. He was a very brave individual.

Senator LeBreton: To say nothing of what it did to you.

One thing that motivated us when we were going through our health care study was the stigma issue. You described the situation at the hospital. When you walked through those doors, it was as if the stigma was written across your forehead.

Murray: We have never been troubled too much with stigma and taboos. At least I do not think we have.

Senator LeBreton: The stigma is twofold. It is also related to the people who treat this. They have a psychological barrier. Even though you may not let it get to you, they let it cloud their judgment, do you not think?

Murray: Yes, I think so. There is no question about that happening. When we were informed what we were facing, we did work very hard.

We have not done any volunteer or advocacy work yet, but I believe we will be doing that later.

Senator LeBreton: I have one question for Loïse. I was struck by the number of times she had to tell her story. Did they not keep records? Could you not just say, ``Look it up''?

Loïse: They do keep records, but not from one department. There are a lot of different clinics, and there is a record; however, sometimes the record is very thick. They do not really consult the records. There is a confidentiality issue, so the hospital does not give information to the CLSC, and vice versa. When you go with the community groups that are doing psychosocial work, you sign papers saying that you permit them to look at your file, but that is before even I can look at my dossier.

I have a friend who had 120 electroshock treatments in her life. I think the most you are supposed to have is 30. She is still alive. She is a courageous woman. She is an activist. She was treated in three hospitals. It took her a total of nine years to be able to access her dossier, so she could find out why she had lost 20 years of her life and how many electroshock treatments she had had.

You have to repeat your stories over and over again because and they do not seem to communicate among themselves.

If you are in crisis like I was at that time, and if I had not had the support of community groups and a lot of psychosocial support, I would not have been able to do it.

Somewhere along the line, I knew something had to be done. I do not know if it is called courage. I did not want to kill myself. I thought I still had something to do, even if my body was not functioning well. What I am doing right now is what I had to do.

As to the confidentiality issue, it seems to stop people from getting help.

Senator LeBreton: It hurts the people you are trying to help.

Senator Morin: I would like to thank you for coming. Your stories have been moving and they will be very useful.


I would like to ask Ronald a few questions. First I would like to congratulate you on your involvement in Le Pavois, which appears to be a success. We will definitely consult the documents that are distributed to committee members. It is not out of the question that we may come back to you on this subject.

Generally speaking, are you satisfied with the care your wife has received over the years? Without giving us the names of institutions, what do you think of the care received?

Ronald: The treatment she received from the psychiatrist was good. He prescribed drugs that suppressed the symptoms. From that point on, medical visits were less and less frequent. However, there is a psychosocial system developing extensively in the province of Quebec which provides a huge service. That was not in existence when my wife became ill. She was unable to take advantage of that psychosocial assistance and probably would not have taken advantage of it because, even today, she says she is healthy. She will not accept the diagnosis of schizophrenia. Although I say it with circumspection, because she goes to certain recreational organizations where she does painting and poetry, and, when it becomes too stressful, she withdraws.

Senator Morin: When you say ``psychosocial,'' do you mean community services?

Ronald: It is mainly that. To add to what Loïse was saying, there's poor communication between the various organizations, the CLSCs, hospitals and community organizations. For example, we had a member at Le Pavois who was doing very well. Everyone said he was doing well. He was supervised by a CLSC, a doctor and a social worker. He was doing so well that he called everyone during the day to tell them how he was doing. People got tired of it and asked him to call less often. He considered that a rejection, took his bicycle, rode to Montmorency Falls and jumped him. He was supposed to be doing well.

Senator Morin: I also congratulate you on your involvement in volunteer work. You said you had faced discrimination. Do you find there is less discrimination against mental illness than there used to be? Has there been any change with regard to discrimination?

Loïse: I recently had to talk with police officers. Someone at a conference of Canadian police chiefs had requested a user's opinion, that is to say the opinion of users on ideal police intervention with individuals who have mental health problems. As a result of the two conference days, I could say that, yes, a little bit of information was distributed. If you remember when we were young, the worst insult we could utter in the school yard was: You're a retard. I think they still say it. Since desinstitutionalization, we see more schizophrenics in the street talking very loudly, and they are ultimately the most visible; they are the ones who scare people the most and who are the least cared for.

There hasn't been a lot of change. I see this in my family, and I nevertheless come from a fairly educated family. I'm going to tell you about Montreal, for example. We organize press conferences for the community sector, for users, to explain the various diseases to people, but no journalists ever come. However, if someone who is mentally ill commits an indictable offence, the headlines read, ``Schizophrenic kills wife,'' ``Manic depressive man abuses his children.'' And yet, I've never seen, ``Cancer patient kills his wife,'' or anything like that. In this regard, the media don't help matters. There is work to be done. In a more educated, specialized population, where there are fewer prejudices, things are better, but it's still a very serious problem.

Senator Morin: Thank you for your testimony.


The Chairman: I will just say, Loïse, as someone who grew up in Montreal, I can still vividly recall references to what was then called the ``Verdun Insane Asylum.''

Loïse: That is Saint-Jean-de-Dieu.

The Chairman: Exactly.

Senator Cordy: Thank you very much for your testimony. It was most compelling. We are all moved and we, perhaps, find it difficult to ask questions, but there are so many questions.

Murray and Ronald, you both spoke about schizophrenia. Murray, you said that when your son died there was no alcohol or illegal drugs in his system, as well as no prescribed medications. You both said that schizophrenics tend to believe that they are not ill and they do not want to take medication.

How do you balance the philosophy that patients have the right to refuse medication with what may be best for the patient? One of your questions dealt with the schizophrenic being unable to make reasonable decisions. How do you balance the two?


Ronald: In fact, the person does not want to take the drug, not because he feels he is free to take it or not to take it, but because he cannot accept that he is sick. If he isn't sick, why would he take drugs? After a while, though, when the religious delusions and hallucinations constantly return, he decides to take the drugs and the symptoms disappear. At that point, he feels he is cured, throws out the drugs and stops taking them and, three months later, everything starts all over again. That's how things happened in my case.

Once he realized she had to take the drugs, she continued taking the drugs and the symptoms disappeared. If we were not stuck with the entire negative side of the disease, the social withdrawal, personal hygiene problems and all that, they would be nearly perfect. The new drugs work on the negative effects of the disease.


Murray: The term used to describe those who do not think they are ill is anosognosia. They sometimes come off medication because it interferes with what they perceive to be their intellectual or supernatural powers. They can do exceptional things because they do not have a rational thinking process much of the time.

When it comes to balancing rights with forcing medication, as a parent, you are very concerned about your child's life and well-being, and it is not a question of his rights. He has a right to treatment, and he does not realize he needs it. He has a right to life, although he is incapable of maintaining it himself. It becomes very clear when you reach the point where his life is endangered.

Senator Cordy: I understand everything you are saying. I ask the question because my husband has a relative who is schizophrenic. When she rejected her medication, one nurse went above and beyond her duty and phoned my husband. She said, ``We cannot force her to take the medication. Would you do it?'' My husband always managed to convince her to take it. However, his relative brought this issue to the hospital board, complaining that it was against her rights, and the nurse was told that she could not phone my husband when the patient did not take her medication.

Murray: The rights issue is on our list of things that should be dealt with. It falls outside of the normal legal framework. When dealing with someone who does not have capacity, it is very awkward.

There are varying degrees of schizophrenia and the people who complain about their rights may have a minor form of the illness and feel that they are being persecuted and dealt with unfairly. It is a difficult issue.

Senator Cordy: You spoke about the situation when you took your son to the outpatient department, were unable to have him admitted, but were given medication. I am not sure if you have a medical background, but how did you react to that?

Murray: Thankfully we are all computer literate. We went on the Internet and found a huge amount of information and were able to deal with it. If we had not had that resource, we would have been in deep trouble.

Senator Cordy: There was no bed available in that instance. Did you ever take your son in and they refused to institutionalize him?

Murray: No. When we took him to a medical facility it was usually to the emergency department and the doctors could not conclude that he was behaving within the realm of the reasonable. It was not an option for them. The second time we took him to the hospital he was restrained and placed in a room, and that is when we started to learn a lot about the health care system.

Senator Cordy: You also said that your son would be in the hospital for a period of only a few weeks.

Murray: It is the assembly-line model of health care. When someone goes in to have their tonsils removed, they are out the door in a day. In mental health care they seem to use the same treatment model. When you come in with schizophrenia, you are loaded up with medication and out the door you go in a week or two. It is the revolving mental health door.

After three or four experiences like that, we concluded that this was not working. After numerous certification hearings, we concluded that we would say no whenever it was suggested that they could do nothing more for him at the hospital. When we heard the words ``We can't do anything more for him here,'' all the lights went on, because we knew that our son was coming home and we would have to provide 24-hour-a-day supervision, et cetera.

He did stay in the hospital for up to six months. When he was killed, he had been in the hospital for two months.

Senator Cordy: Is there support for families? Three of you, two of whom have an ill child and one who has an ill spouse, have stuck by your family members, but you have shared a lot of the frustrations that the members of your families experienced. I do not perceive that there are a lot of supports in the community for caregivers who have family members who are mentally ill. Is that true?


Ronald: Yes, that is true for us. There was very little support for the family as such. I previously met with a psychiatrist to tell him that I had a 10-year-old daughter and that, if nothing was done for her, she would probably be sitting in his office in 10 years. He told me that there was no prevention to be done. It should be noted that you have to go back 10, 15 or 20 years, when there was much less psychosocial talk.

It may be a bit better today. Now at Compass, we have gatherings, sessions for children whose parents, brothers or sisters are ill. Those services did not exist at the time. I had no help. My youngest had a great deal of difficulty. Even today, we tell her that the disease is hereditary, and she's still afraid of the disease and she's now 30 years old. There has been no follow-up.

At the time, I was alone. The situation was difficult, and I had no help. I had to deal with all that. How I managed to get through it all, I don't know. Unlike in Murray's case, there was no violence. It was more emotional. My wife withdrew from the world. There was very little violence. It occurred on a few occasions. There were some suicide attempts because she had so little self-confidence. But it was very hard on the children.


David: In our case, we had very little help. There was nobody to provide our family with any help, and that was a major concern. I think today things are different, but the help that is there now is not in the public sector — it is in the volunteer sector. I am part of it now. I have joined the network for people with autism, and both my wife and I are heavily involved with our provincial and national autism societies. We have a network of support parents. Most are people with older children who have accepted their situation and their lot in life.

In the case of autism, younger families with newly diagnosed children are in trauma, and they do not join societies. They do not reach out, and they certainly do not participate.

There is a volunteer sector that is alive and well, much more than was the case 15 years ago when my son was a bigger problem than he is right now. I think things have changed. I do not know if that is true of other disabilities, but for autism, things are a little better.

Senator Cordy: David, a few years ago I went to a conference for parents with younger children with autism. You are right. Sometimes autism is spoken of as a children's disorder, but those children grow up. You spoke about applied behaviour analysis. I wonder about the premise behind that and how it works. Would the funding for your child to receive applied behaviour therapy be covered by the medical system in the province?

David: ABA is essentially rewiring the brain. In the case of autism, the big problem is getting people to do practical tasks. I am not knowledgeable enough about applied behaviour analysis to be able to give you a lucid explanation of what it is. It is fairly simple minded, people working one-on-one to try to get people with autism to do things in a systematic way. People with autism find that difficult. They need to be told that, in order to pour water from that jug into the glass, they must first lift the jug and then lift the glass. You have to spell out every step, and that is part of what ABA is all about.

Funding was not available as a matter of entitlement. It is now, though, because there have been a number of court cases across Canada. In my province, it is available from the age of two to five, but there is a waiting list. There was a recent court case before the Human Rights Tribunal by a grandmother because of a delay in her grandchild getting access. There is a window of opportunity.

I should emphasize that younger people benefit. If you can get the therapy up to age five or six, it is more beneficial. That does not mean it is ineffective for older people. However, if you do not get the treatment during the window, you are lost, because the public sector will not pick up the cost. Nowhere in Canada is there publicly funded treatment available for people beyond age six. If your child is not diagnosed early enough, you lose that window of opportunity, and you are lost forever, unless public policy changes.

Senator Morin: How long is this treatment?

David: This treatment can take a year or two. It depends on the individual.

Senator Morin: Am I right in saying it costs $50,000? If every autistic patient in the country were treated, we would be talking about $50 billion a year, which is half the budget devoted to health care.

David: Not everyone would benefit from this. People have to be diagnosed to determine if they would benefit from applied behavioural analysis. The $50,000 a year is not unusual in terms of the cost in the States. We are looking at a range of $40,000 to $50,000 a year. It is expensive. It is normally provided for children aged between three and five, and it usually takes 18 months to become effective. For some people, it takes longer. Children are not entitled to receive this treatment beyond the magic age of cut off. It is not something that needs to be repeated ad infinitum. If a young person gets this treatment, there is a 47 per cent chance that he or she could perform in high school — not up to a normal standard — but he or she would benefit from schooling. Nothing can restore or achieve normality. We have not discovered anything like that. This is the most effective treatment, and it is 47 per cent effective.

The Chairman: The other observation one should make is that, presumably, with an increased skill level, there will be savings in the long run because there will be less expenditure required down the road. There are clearly benefits.

David: It is cost effective.

Senator Cook: I thank you for your candour and the strength you have shown in telling your story. Before I came to this place, and I still hold on to a bit of it, I was a volunteer in the area where you find yourself, so I have some empathy.

David, could you to tell the committee what your dream is for your provincial facility? What would you see as a function of that facility for which you are so painstakingly raising money?

David: This is a provincial centre for people with autism. The purpose would be to provide recreational and learning opportunities. It is a learning centre. No other service is available. This would be for people with autism to learn new skills, and some of them will be able to enter the labour force as a result of learning those skills.

The centre also provides training for medical people so that they can better understand autism. It is a training centre.

The centre provides opportunities for people with autism to do things. For example, we want them to be able to work with their hands. Many people with autism like to work with animals. There may be opportunities to go horse riding or to grow crops, to become productive. We have been working for the last three or four years to raise the funds to create the centre, and we have had support from the Rotary Club, as I mentioned earlier, and a lot of help from certain individuals who have been helpful to us in raising funds. We have had some ``cost-share'' money from the provincial government, and we are looking to the federal government for support as well.

Senator Cook: Where will you find the complement of staff required for this facility? Will it become a government facility, or will it be run by a board of directors or volunteers? How do you see it happening?

David: It will be run by a combination of volunteers and employees. Occupational therapists and speech pathologists would be important components of the staff of the centre, but it will require operating support from government.

Senator Cook: How far along the road are you with this funding?

David: The capital cost is $500,000 and we have raised half of it.

Senator Cook: I think that is a good news story and I want to commend you for it.

Senator Roche: I want to thank all the witnesses for coming. I commend them on the courage they have shown making their presentations. They have opened up profound questions about our society. I have many questions for the authorities in the medical and political fields rather than the witnesses themselves, who have made an eloquent statement.

The ineptitude of the system and the discrimination that victims and families face are common threads that have run through the four stories we have heard here tonight. I know a little bit about this subject from personal experience. You have touched me deeply with your stories.

I will ask David, if I may, about the question of education. You pointed to education and research as a central recommendation. My question to you is: the education of whom? Education of the public — yes — but perhaps we also need to educate the authorities, although I am not even sure who the authorities are.

Can you blame the psychiatrist who did not prescribe the right medication or take the right action? Can you blame some part of the political system that did not put enough money in? It is difficult for me to even formulate the question as to whom we should focus on when putting forward a recommendation that there be greater education in order to lift our society to better understanding and responsiveness to this. How would you react to my own dilemma on education?

David: I think that is a key question. I spoke about education in the context of education of medical practitioners — psychiatrists, psychologists, GPs, occupational therapists, psychiatric nurses and a whole range of people in the medical field. That is extremely important because there is a body of knowledge out there that is not well known.

It is a rather arcane group of people because the autism community is small. It exists in certain pockets, mostly in the United States. There is very little research being conducted in Canada. There are a few exceptions to that, and it is changing. Important things are happening. As I mentioned earlier, two universities are doing important research on epidemiology and the causes of autism.

However, I think the thrust of your question is: How do we get to the policy-makers on this issue? It is a real struggle we have all had. How do you explain the seriousness of this problem? I have found that the only way to get through to people is by doing what we are doing here today. However, this kind of presentation is extremely difficult to do, and very few people are prepared to put these kinds of issues on the table.

When we were looking for funding, I raised the issue of the provincial autism centre at my Rotary Club. I found there was a lot of concern about stepping up to the plate to raise money for autism because nobody knew what it was. We ended up putting together a little brochure to explain autism, but that was totally useless.

If you put together a clinical definition of autism and a clinical explanation of the impact of autism on people, done by good public relations people, it is a total waste of time. The only way to make an impact on people is through personal experiences. What I did with my Rotary Club was bring in people and have them talk about their situation. One man who was the father of a 20-year-old autistic boy talked about how his wife, who was a psychiatric nurse, would wear long-sleeved dresses in the summer because she had to cover the scratches and bruises on her arms. That had an impact. You could hear a pin drop at the Thursday luncheon when those statements were made.

You have to put a human face on it, as the chairman said. I do not know a better way to do that than to have people like the four people at this table stand up and be counted, to say things that are very difficult to say. That is why I think what they have done here today is very courageous.

To be honest with you, I do not know another way to do it. People do not understand. Politicians do not understand. They have no understanding of what we go through. How do you provide that understanding? It is only when they have a family member or some relation who has this dilemma that they can relate to it. It is very difficult to understand unless you walk in our shoes.

I have talked with my sister and her husband, who are very supportive people. Every time I talk about the things we go through with my family, she looks at me in wide-eyed amazement. I say to myself, I thought I told this story before.

I do not know how to communicate this. It is a real challenge, and it is one that we have faced in our Rotary Club and in our autism society. How do we explain?

The Autism Society Canada recently put together a 30-second public service announcement on television to try to explain what autism is all about. It cannot be done. There is not a PR person in the country who can explain what autism is in a 30-minute clip. My response to the question is: I don't know the answer.

The Chairman: I think that is a direction we will have to take.

Senator Kinsella: I wonder if the witnesses could help the members of this committee determine, as we carry out the study on mental health in Canada, whether or not the model that we use in Canada to deal with mental health issues is the right one. Would you reflect on your experiences further and tell us: Did you confront a system that was delivering a medical model of the mental health delivery system, or was it conflicted with the psychosocial model? Are we lacking a model of mental health delivery and articulated identified approach that would be more holistic? For example, in your respective provinces, whilst medicare covers psychiatric care, does it cover psychological care? Is that a problem?

Loïse: Rarely in my province.

Murray: Psychosocial help or help from a psychologist must be recommended by a psychiatrist. They rarely do that because psychiatrists have a tendency to rely heavily on the medication model.

Senator Kinsella: One public policy issue that a committee like this one could address would be: Why is there this dichotomy?

Loïse: I am part of a pilot project in a clinic for difficult cases. Once a month, people from the consultation table meet, and people from all over our subregion present cases with which they have difficulty. Many involve personality disorders.

We have people from hospitals, CLSC, social workers, psychiatrists, nurses, and myself. For the first time we now have someone who is a consumer. At the last meeting when we were deciding if we were continuing this clinic, which we are, we found that the people from the institutions were asking the people from the psychosocial branch what they should do.

People from the community were saying that they could not tell them what to do because the approaches are different. When people from the community have a crisis, they deal with it immediately. When institutions have a crisis, they must go through three, four, five, six different channels. The person has to wait.

The institutions are trying to model new programs in the community, taking a psychosocial community approach, except that it does not work because they are still within parameters of the community.

The final answer would be to have case management where there is more communication between the institutions and the community groups that are working in psychosocial services. There should be case management or share and care. That would be one solution.

Senator Kinsella: Is there also a problem with the present approach that we have been following in Canada to mental health, that it is based on a medical model that tries to have a medicine, one-size-fits-all approach? Is it your experience or is it not your experience that each individual autistic child or adult is the same or alike?

David: The reality is they are all different. That is one of the problems.

I wanted to comment on Loïse's remark in regard to these people asking the same questions. Every time my son goes in, they go over the same questions again and again. He got so turned off that I cannot get him to go back to see another psychologist or psychiatrist because it is so painful.

I think it is very important that there be a different medical model.

With regard to autism, we found that changing diet, that is, removing gluten from bread, and removing casein from the milk makes an enormous difference. For some people auditory training is a success. For some people with autism, drugs work. Prozac or Ritalin can work wonders for some people with autism.

A one-size-fits-all approach will not work. There must be an interdisciplinary approach and a multi-disciplinary approach. Many of the therapies are almost outside of the medical domain. As I mentioned, the applied behavioural analysis is done by people with degrees in psychology as opposed to people with degrees in medicine. This psychosocial type of treatment is what works best for a good number of people with autism.

Senator Kinsella: One of the witnesses drew our attention to the concern about the kind of research that is going on in the field of psychopharmacology. As I understood what was said, there is more research being done on finding products that will be used for maintenance and control, and not very much research being done on eradication. I thought that was a tremendously important issue.

The Chairman: We will look into it.

Murray, I noticed you wanted to add something when Senator Kinsella spoke. Could you go ahead and respond. Turn your microphone on, please.

Murray: I simply wanted to cover the point that the assembly line model for treatment does not work in schizophrenia. With regard to the medications, there is a great deal more money spent in providing treatments, and a lot less money spent in finding a cure. It is a matter of economics.

We did try to find a psychologist. What I ran into, first, was reluctance by the psychiatrist to recommend a psychologist. Second, when I tried to find one who specialized in schizophrenia, there were none in our city, although there were one or two in Toronto.

It is a matter of having been excluded from the field by one profession. The resource does not develop in the other profession.


Ronald: We encounter the same thing in Quebec. When you start with a psychiatrist, you have to stay with him; you cannot change. The improvement is coming from the psychosocial groups that are forming now to a greater degree. At first, I remember an experiment that was conducted in which they talked about individual service plans. The mentally ill person was supposed to be the central person, and, around him or her, there was a team, the psychiatrist, the nurse and so on. That didn't work because they weren't able to bring the entire team together.

Now it works in small organizations such as ours, where the nurse agrees to cooperate and the doctor as well. And at that point, as Murray was saying, each schizophrenia case is the same. What percentage is reached? There are all the homeless who are not reached at all.


Senator Callbeck: Thank you all for coming. You have touched and motivated us by your stories. Thank you for being so open.

When the diagnosis was made, I assume from what you have said, that the doctor did not make any suggestions as to how to deal with the illness?

Murray: Yes.

Senator Callbeck: One of you made the comment that the only help out there now is with the private sector, the volunteer sector, and it is expanding quite a bit. What role should the public system play?

David: The volunteer sector is stepping into the breach. That is because of the void that is out there. The volunteer sector is advocating that there should be a major role by the public sector to provide ABA treatment for young people, and to make it available for older people, as well.

That is another big issue. We are on the cusp of dealing with the question: What about beyond the age of five or six? It goes back to the comment earlier about autism not being only a children's disease.

The therapies that work for children can also work for adults. There has to be effective treatment for people of all ages. People should not be cut off because they are older.

The public sector does have a responsibility. There is no difference between someone who has a mental illness and someone who has a physical illness. That is the key question: Are we treating people with mental disorders with the same urgency that we treat people with physical disorders? I do not think we are. That is the fundamental question here. There is an equal public policy role for government in dealing with mental disorders. How do we do that? How do we change the environment out there?

The reality is that a mental disorder does not have a sense of urgency because it is recognized that people with mental disorders will be around tomorrow, whereas people who have heart disorders or cancer have to be treated today because they may not be around tomorrow. That clouds the whole issue. We must do something about it.

One thing we could do — and this is where your committee can play an important role — is for the Government of Canada, with regard to the transferring of funds for mental disorders, to put those funds in a fiscal envelope to be used only for mental disorders. That money cannot be used for anything else.

I used to be on the board of directors of my provincial psychiatric hospital. The government, in its wisdom, decided it was a great idea to unify all the hospitals. I do not know what the virtue of that was. There was a famous economist by the name of Schumacher who believed that small is beautiful, but there was an idiot, whose name was never ascribed to his theory, who believed that big is beautiful. The big-is-beautiful theory seems to have many proponents in government. They were in ascendancy when it was decided to put all these hospitals together. Some of us fought this vigorously because we felt this would lead to a diminution of care and a switching of funds from mental to physical illnesses. I have not documented whether that has happened, but it would be a useful exercise for your committee.

While our hospital dealt only with psychiatric disorders we had a separate committee which dealt with psychiatric patients who had been discharged into the community. They were housed in large for-profit homes accommodating 20 to 30 people. Those people were pushing the envelope; they were putting more people into those homes than they probably should have.

I was a member of a community care committee that would investigate those homes. We were volunteers. We would inspect them twice a year. We were behind the people in the hospital who were ensuring the quality of care. If we were not there, the political system was such that those operators could push the envelope of safety by having more people in those homes than they should.

We provided a volunteer community service, gratis. When the integration came about, that community care committee went down the sink.

All of this is to say that one way to protect people with mental illness is to put the money in a separate box. We must make sure that the institutions that are providing the care are appropriate institutions, and that the priorities in those institutions are not deflected by priorities of the moment. The important always becomes victim to the urgent.

Murray: Dave described an accountability model in which he and others oversaw the quality of care in a facility. I think it is critical, when these envelopes are provided, that you have an accountability model and that the accountability be in the hands of the users — the mentally ill and their families — so that somehow they can control the expenditure of those funds. They understand the issue and the problem better than anyone else.

Loïse: I have heard much about psychosocial work being done by volunteers. I do not know about anywhere else in Canada, but in my sub-regions, there are seven psychosocial groups. Volunteers fund the help groups, but the groups include either psychologists or social workers trained in psychology who work on the street and with people. I am on the board of administrators of one. We are having trouble because they do not receive the same amount of money as they would if they worked in one of the hospitals. We lose the good workers because of the lower salary. There is a 15 per cent difference in salary for the same work between a social worker with psychological experience who works in the CLSC and one who works in a community group.

I would suggest that some money be given to community groups and that the social workers who work for the community have equity with the ones working for the system. I think that is very important. They are working as much as, if not more than, the people in the system. We would have to take it out of the money we have. The region will not give us more money for workers. A 15 per cent difference in pay equity is a big difference for the same instruction, the same BA, the same everything. That is one of the things you could look into.


Senator Léger: You started by saying, ``We are the experts.'' Yes, that is who we received today, and thank you very much. It says on our committee preparation sheet that we are going to meet experts today. But on my sheet, it says that we are going to start meeting the experts next week. I am very pleased.

The psychosocial aspect seems to provide the help you need now. You said, Loïse, that the community and community organizations should be given a chance. That's what you just said now; that was my response. What is that?

Loïse: There are volunteer community organizations, but there are a number of mental health organizations in Montreal, approximately 40 in Montreal, that work in the community, either on the recommendations of a psychiatrist or else they are approached directly. I was thinking of them, but there are also others with volunteers like Ronald.

Ronald: Le Pavois is a community organization, but we can't work without specialized educators to supervise the patients. The funds come from the regional board for these people who supervise. Their salaries are 15 percent lower than in the system. There is no social insurance, no earnings insurance and no vacation.

Senator Léger: That is where we put the emphasis in our studies. We focus on the product, not on what you are talking about.


The Chairman: At the end of a session like this, it is customary for the chairman to thank the witnesses for being here. Somehow, today, just saying thank you to you does not seem to be nearly enough. It is fair to say that you have had a hugely emotional impact on all the members of the committee. I appreciate how difficult it was for you to come and talk this way.

With the motivation you have given us, I hope that we can, over the next year or so, come up with some strong recommendations in terms of what governments in general and the federal government in particular can begin to do to deal with this issue.

I want to say, on behalf of the entire committee, how much we appreciate the effort you went to in order to help us get this study launched as successfully as we clearly have today.

The committee adjourned.

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