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OUT OF THE SHADOWS AT LAST 

Transforming Mental Health, Mental Illness and Addiction Services in Canada

The Standing Senate Committee on Social Affairs, Science and Technology


PART I
The Human Face of Mental Illness and Addiction

 


CHAPTER 1:
VOICES OF PEOPLE LIVING WITH MENTAL ILLNESS

 

O

ne of the most troubling stories heard by the Committee came from a young woman we had the opportunity to meet during our time in St. John’s, Newfoundland.  In tears, Helen Forristall told her story of being diagnosed with depression:Text Box: The purpose of this chapter is to share with readers some of the stories we were told — in the words of those who told them.  We hope that these stories will affect readers as they have every member of the Committee.

I do not like to admit it.  I am ashamed and humiliated and I still have to work on that, but I am a mental illness consumer and I do take strong offence to stigma. 

[…]

My doctor told me I had a sick brain just like somebody else would have a sick heart and that is fine and well in a doctor’s office, but in society, that does not work.  People tell me to, “Snap out of it,” and “Think happy thoughts.”  They recommend books to you and they lay this guilt trip on me, such as, “You are too young to be depressed,” and, “You have nothing to be depressed about…”  Again, I did not choose this.  If I had breast cancer, nobody would question me. 

When I came to my employers and told them that I was depressed, they said, “Well, you will have to prove that.”  I said, “I intend to.  I have a note from a psychiatrist that says so.  If you would like to see my purse, I have lots of pills that I have to take and I have to suffer through.” 

I also have to suffer through the indignity of being looked down on and it bothers me a great deal, so it is difficult to sit here [at the public hearing].   I find myself hiding behind my hair when there is a picture being taken because I still deal with the shame every day.

I wanted to say that I left my job last year sobbing […].   I worked with the federal government.  I left my job, July 9.  I have not been back.  I am on the status of leave without pay, leave undetermined.  I have to fill out questionnaires monthly to prove that I am still mentally ill.

I had to beg my GP to have an appointment with a psychiatrist.  I begged him, I pleaded with him and his response was, “Yes, well, he has 600 active patients.  He is getting old and you do not really need this.  Just keep on taking your drugs…” 

[…]

I am in a program in Merchant House for which I had to wait six months to get an interview to be accepted into the program.  I am glad to say I am in the program, but my counsellor has recommended that I go into group therapy, for which I am on two waiting lists.  I am sixteenth on one list and she did not want to give me the number of the other list because it is much too long.  She told me the program is supposed to last six months, but it ends up being two years or so because of the waiting lists. 

[…] I have lost family and friends because they are afraid.  The fear in this case is ignorance and I just have to deal every day with suicidal thoughts, medication, therapy and psychiatrists.  It is not an easy road. 

I would do anything to have breast cancer over mental illness.  I would do anything because I [would] not have to put up with the stigma.[3]
— Helen Forristall

Text Box: I have lost family and friends because they are afraid. (…)

I would do anything to have breast cancer over mental illness.  I would do anything because I [would] not have to put up with the stigma.
— Helen Forristall
Helen’s is a disheartening example of the lack of support from friends, family, co-workers and employers that many people living with mental illness face every day.  Hers is also an example of the difficulty accessing mental health services all too often experienced by these individuals.

 

 

 

1.1        INTRODUCTION

Over the past year, the Standing Senate Committee on Social Affairs, Science and Technology has received more than two thousand submissions from all across Canada on the subject of mental health, mental illness and addiction.  Hundreds of Canadians shared heartbreaking stories that revealed to the Committee the true state of Canada’s mental health, mental illness and addiction “system.”[4]

Through two online consultation processes, as well as hearings in every province and territory, the Committee heard from those who are most directly affected by Canada’s mental health system, people who live or lived in the past with a mental illness or addiction.  The purpose of this chapter is to share with readers some of the stories we were told — in the words of those who told them.  We hope that these stories will affect readers as they have every member of the Committee. 

The members of the Committee have come to recognize the reality that profound change is essential if persons living with mental illness are to receive the help they need and to which they are entitled.  We trust that readers of this report will reach the same conclusion.

1.2        EXPERIENCES WITH MENTAL HEALTH AND ADDICTION SERVICES

Although the Committee did hear from people who managed to find the supports and services they needed, their stories, sadly, were far outnumbered by those from others about their ongoing struggles to get the help they need to cope with and recover from their mental illnesses and addictions.  The Committee heard about the enormous challenges that they face and the tremendous barriers that hinder their efforts to recover: their confusion and frustration over how and where to find help; ignorance, lack of compassion, and poor treatment from health care professionals; long wait times for service; and the stigma and discrimination that make so many affected individuals hide their problems and often even avoid seeking help in dealing with them.

 

1.2.1     Confusion and Frustration

Text Box: I no longer have any hope or expectation that I will recover, nor do I feel that the government will ever provide me with any kind of meaningful treatment to help me overcome this illness.
(…)
So by giving up all hope I never find myself forced deeper into depression by a rejection and the quashing of hope.  
—James
Tom, Paul, and James illustrate the frustration too many people experience in finding the assistance they need:

I wanted to call for help.  I had no food, was very cold.  I was truly destitute.  In calling the local addiction service I got an answering machine repeatedly.  I had no phone number to leave.  I hung up the phone and cried and cried.  After that I became utterly homeless, was in jail and attempted suicide.  What if someone was able to answer that phone?
—Tom

 


It is nearly impossible to get a full picture of the support available and how I can access it.  Much of the information is disjointed and difficult for a layperson to understand.  —Paul


In short, I gave up all hope in life.  I no longer have any hope or expectation that I will recover, nor do I feel that the government will ever provide me with any kind of meaningful treatment to help me overcome this illness. 

I live in a single room, alone, where I live out my days.  The only reason I haven't killed myself is to spare my parents the pain it would cause. 

I have never turned down a treatment, not even experimental drugs which I have tested on a couple occasions.  However, without an advocate or a willing psychiatrist, I'm in no condition to face the continual rejection by specialists who hear my story and feel they can't help me.  So by giving up all hope I never find myself forced deeper into depression by a rejection and the quashing of hope.  —James

 

1.2.2     Lack of Knowledge and Compassion

Text Box: Can you imagine if a woman went in to see her doctor with a lump on her breast being told, “Sorry, madam, I do not do lumps, but I can get you in to see a specialist within six months to a year.” Yet, the equivalent of that happens regularly to people who have overcome the stigma attached to mental health and go to their doctor.  
— Rafe Mair
Among others, Deborah, Jennifer, and Rafe told the Committee about the lack of knowledge and compassion that they encountered within the health care professions:

If you are working in the mental health system, you have to care.  You have to show people respect and dignity.  This is something that I find is still missing.
—Deborah Jackman[5] 

 


To speak from my personal experience, being on a psychiatric ward was one of the most traumatic experiences of my life. 

The things that happen on a psychiatric ward taken in any other context would be seen as devastating.  People being locked in tiny rooms they cannot leave, tied to a bed and injected with chemicals against their will are clearly traumatic experiences.  Being told that it is all right because they are in a hospital is really a departure from reality.  —Jennifer Chambers[6]


Can you imagine if a woman went in to see her doctor with a lump on her breast being told, “Sorry, madam, I do not do lumps, but I can get you in to see a specialist within six months to a year.” Yet, the equivalent of that happens regularly to people who have overcome the stigma attached to mental health and go to their doctor.  —Rafe Mair[7]

 

1.2.3     Lack of Services

Many participants, including Pat, Francesca, Susan, and Raymond, told the Committee that, aside from being confusing and frustrating to access, many times services are simply not existent for those who have a mental illness:

The only resources we have in any abundance, yet again, are expensive psychiatrists, occupational therapists, and nurses and social workers who are reduced to delivering pills and needles, effectively keeping discharged patients in chemical straightjackets for the comfort of the mainstream community.

Text Box: We should not be concerned with what is good for the staff; we should be concerned with how these patients will get better and ultimately end up going back to their lives.
—Francesca Allan
If a client is depressed and upset because his life is so narrowly constricted, his medication is increased.  If he is fearful of a landlord or unable to sleep in an overcrowded room, his medication is increased.  If poverty leaves him hungry and restless, his medication is increased, and if he has enough remaining life inside his body to be angry, the dosages will ensure that that anger is forgotten.  —Pat Capponi[8]


Another huge problem in the hospital is that they are looking for ease of management.  Like, it is easier when people are drugged, they are no trouble, and they are just staring at the wall, staring at the TV.  That might be a good thing for the staff. 

We should not be concerned with what is good for the staff; we should be concerned with how these patients will get better and ultimately end up going back to their lives.  —Francesca Allan[9]


Statistics prove that medication alone is not as successful as a combination of both psychotherapy and medication.  Other forms of therapy are not available to those of us on fixed income or incomes that do not allow for the sometimes high cost of therapy through psychologists, social workers and alternative therapists.

[…]

I am slowly making my way back to a state of mental health, but will not be able to do so without the assistance of a psychiatrist and a psychologist.  Our provincial health plan covers the cost of psychiatric services, but does not cover the cost of psychological services.  I must pay for this unassisted by any private medical plan.  My family is surviving on one income… —Susan Kilbridge-Roper[10]


...what people need sometimes is a safe and comfortable place, open at hours they want, accessible to their needs, and feeling, and having a feeling of community and sharing food, talking to one another, laughing together, and helping one another.  Unfortunately, here in Ontario, that does not constitute billable hours, so we do not get the kind of financial support that we need, but it is just as valid and just as helpful. —Raymond Cheng[11]

 

1.3        WHAT ARE INDIVIDUALS LIVING WITH MENTAL ILLNESS ASKING FOR?

1.3.1     The Social Determinants of Mental Health

Text Box: Our provincial health plan covers the cost of psychiatric services, but does not cover the cost of psychological services.  I must pay for this unassisted by any private medical plan.  My family is surviving on one income… 
—Susan Kilbridge-Roper
People personally affected by mental illness identified for the Committee a number of services they believed necessary for them to cope with and recover from their disorders. Social supports such as employment assistance and adequate housing, education and research, and self-help and peer support are those that were considered most important.

Witnesses like Diana and Raymond explained that the social determinants of mental health have been largely overlooked despite their importance in preventing and in treating mental illness:

There has been a complete lack of attention to the social determinants of health as they relate to people with mental health or addiction issues. 

[…] Good health implies participation, self-determination and good self-esteem.  —Diana Capponi[12]


…Mental health is integrated with one's physical, social, spiritual and economic well-being.  Hope for a future is truly realized if there are genuine expectations that inequities within society will be addressed.

My friends […] have already eloquently spoken about what it feels like to have a job, a place to call your own, and a social network of friends.  I hope you heed our collective call that individual recovery from mental health is impossible when struggling with the consequences of poverty alongside stigma and discrimination.  —Raymond Cheng[13]

 

1.3.2     Employment Assistance

Karen, Joan, and another participant who wished to remain anonymous explained the difficulty often met by people living with mental illness who are trying to find jobs:Text Box: …individual recovery from mental health is impossible when struggling with the consequences of poverty alongside stigma and discrimination.
—Raymond Cheng

In my own case, because I had been so open about my illness, it took me a number of years to find decent, secure employment.  I felt that people now saw me as a gamble.  If I had survived cancer, diabetes or high cholesterol, I'm not sure I would have faced the same challenges. —Karen

 


People are petrified to go off of their income assistance, because when they stop and think about it, in the real world if they were out working, they would have to make upwards of $50,000 a year to be able to stay on their medication.

 I know of one individual whose medication totals $1,500 a month, and that in itself is shocking, not that the person is taking that medication at that expense, but the fact that they are caught between the rock and hard place.  Yet, at the same time, they want to work, but know that their skills base does not allow them to make the money to be able to support their medication.
—Joan Edwards-Karmazyn[14]


Text Box: People are petrified to go off of their income assistance, because (…) if they were out working, they would have to make upwards of $50,000 a year to be able to stay on their medication.
— Joan Edwards-Karmazyn
The way the Ontario Disability Support Program is set up, discriminates against people with mental illness who want to work because if they earn more than $160 a month ODSP is clawed back, guaranteeing that they will always be below the poverty line.
—Anonymous

 

 

1.3.3     Safe and Adequate Housing

Katherine and Scott explained that individuals with a mental illness often also face difficulty in finding safe, adequate housing:Text Box: Good luck finding adequate housing when they find out you have a mental illness.
—Katherine

Good luck finding adequate housing when they find out you have a mental illness.  —Katherine

 


There are sections of this city, and many others in Canada, filled with boarding homes, and in those boarding homes and group homes, you will find people who have little more in their lives than regular doses of medication.  Many of them live with little meaning or purpose because Canadian society fails to recognize they have worth.  Some struggle with poverty so grinding and housing so appalling, it would challenge the sanity of even the strongest among us.
—Scott Simmie[15]

 

1.3.4     Peer Support

Text Box: (…) I learned more from my peers than I did in the previous 12 years dealing with what I call the “formal mental health system”.

I learned by listening to how others kept themselves well and what they did to maintain their mental health.  I tried some of their methods and some of them worked. (…) I have not taken any medication since then nor have I received any formal mental health treatment since the year 2000.
—Jean-Pierre Galipeault
Many witnesses identified peer support groups as one of the most important services needed on the road to recovery from mental illness.  Susan, Joan, Jean-Pierre, an anonymous contributor, and Roy told the Committee about the importance of peer support:

The value of self-help and support groups in recovery has been very well documented.  My own experience as both a member and a leader of one such group has given me an intimate knowledge of the benefits that can be derived from sharing the joys and sorrows that we as people with common problems face on a daily basis.  —Susan Kilbridge-Roper[16]

 


Why self-help?  People involved with their peers within self-help groups take on a proactive approach towards managing their problems and finding solutions. 

The focus is on wellness and not illness, on ability and not disability, on becoming at ease with one’s limitations and not remaining diseased within one’s limitations, on focusing on the beginning of the recovery process and not on remaining stagnant within one’s misery.  It is about gaining the energy to have choice once again and setting about to plant the seeds of choice to enable the consumer-survivor once more to feel alive. —Joan Edwards-Karmazyn[17]


I received my diagnosis quite a few years ago and it is fair to say that many Canadians with a mental illness treat that illness with medication.   I spent almost 12 years trying to find the right medication. 

Perhaps I am a slow learner, but when I found a self-help group, the light bulb went on.

 […] I learned more from my peers than I did in the previous 12 years dealing with what I call the “formal mental health system”. 

I learned by listening to how others kept themselves well and what they did to maintain their mental health.  I tried some of their methods and some of them worked.  The group experience led me to develop a personal recovery plan and in 1996, I went off my psychiatric medication. I am not an advocate of this generally, but I decided on this course because of concerns about long-term side effects. I have not taken any medication since then nor have I received any formal mental health treatment since the year 2000.  —Jean-Pierre Galipeault[18]


We need some programs available for people to learn skills/tools to help them cope better with people, relationships, stress, anger, sadness etc.  Support Groups should always be available to attend, even just having a drop in-group or something so people come when they want.

It really does help to be able to talk to people who understand what you're going through and won't judge you.  They may have some suggestions that worked for them in similar situations in the past that you may want to try.  It's imperative to have a safe place to be able to talk openly about how you feel.  —Anonymous


 

I have been living with a mental illness for almost 30 years.

[…]

I first received psychiatric treatment in the 1970s […] [I]n 1979, I was hospitalized for the first time with a “nervous breakdown,” or what we recognize today as depression.  The experience, to say the least, was horrible.  This was a time when it was very common for people with a mental illness to be extremely overmedicated. 

[…]

I somehow made it through the 1980s.  I lost my business, my marriage broke up, and I became a person that I really did not like, but I refused to admit that there was something wrong […] 

Then came the 1990s.  I became very ill throughout most of that decade.  I attempted suicide twice and came very close on numerous other occasions.  I had many hospitalizations and was on many different medications over the years and even went through a series of shock treatments […]

In hospital, I was treated with respect and kindness, but I could see how overworked everyone was.  At this time, I educated myself on depression and was willing to try anything that was suggested in order to get well.  Nothing seemed to work […]

I learned through volunteer opportunities that I had a natural ability to talk with and listen to other mental health consumers, and we all seemed to benefit from that […] 

This was a dream that I never believed could happen.  As I sit here before you today, I am living proof that dreams can come true.  In 2001, I was offered a job at the Consumer Initiative Centre, a program of the Self-Help Connection, an organization built on the power of peer support.  I was hired as a peer support worker.   —Roy Muise[19]

 

1.4        STIGMA AND DISCRIMINATION

The stories of stigma and discrimination recounted throughout this chapter have only scratched the surface in revealing the attitudes and unjust treatment experienced daily by those living with mental illness. 

Many contributors pointed to instances in which they had personally experienced stigma and discrimination in every aspect of their lives solely because they had been diagnosed with a mental illness or lived with an addiction.

 

1.4.1     Stigma and Discrimination in Housing

Linda’s and Phillip’s stories illustrate the difficulties individuals with a mental illness have in finding safe and adequate housing:Text Box: My life has completely changed since I moved into my own apartment.  It is not just an apartment.  It is my home.  I am now a productive member of society.
— Linda Chamberlain

 

 

 

No one really knows what it is like until they experience living in a dark, damp room with no windows, no refrigeration, no heat and no rights.  At the time I felt fortunate just to have a roof over my head and a bed to sleep in.  I paid $550 a month for this, a cockroach-, a mouse-infested room with the bed springs that scratched my body. Text Box: The homeless and mentally ill also have a right to live wherever they want, like anybody else.  Nobody has a right to prevent us from living in their neighbourhood.
— Phillip Dufresne

 

 

 

 

The bed springs made it impossible for me to sleep so I changed mattresses only to find the new mattress loaded with bed bugs.  As horrible as this picture may seem, it was actually worse than I could describe.  I was suffering from severe depression and finding myself in and out of hospital repeatedly.  I lived in places like this for a good part of my life.

[…]

When I first saw my one-bedroom apartment, I could not believe it was mine.  I did not think that I deserved such a beautiful place.  I actually thought it might have been a mistake and it would be taken away from me.  I had windows, they opened and I could see out; oh, the light, the sun.  I could smell the grass and hear the birds.  I had my own bedroom, my own washroom.  I have a full kitchen with a stove and a refrigerator.  Now I am able to cook my own meals and I can entertain with pride.

[…]

My life has completely changed since I moved into my own apartment.  It is not just an apartment.  It is my home.  I am now a productive member of society.  —Linda Chamberlain[20]


In the process of advocating for more supportive housing, often we must fight NIMBYism, Not In My Backyard; the stigma of mental illness; and zoning bylaws that discriminate against supportive housing.

The homeless and mentally ill also have a right to live wherever they want, like anybody else.  Nobody has a right to prevent us from living in their neighbourhood.  This is blatant discrimination and a flagrant violation of human rights. 

How would anybody in this room like it if somebody came up to you and said, “We do not want you living in our neighbourhood”?  It does not matter why they say it to you; it is wrong.  People are not allowed to prevent Blacks, gays or Jews from living in their neighbourhood because it is considered a hate crime and they should not be allowed to do this to the homeless and mentally ill either. 

Nobody is criticizing us because of anything we have done wrong.  They are criticizing us out of fear and ignorance.  —Phillip Dufresne[21]

1.4.2     Stigma and Discrimination in the Health Care Professions

Lisa, Sheila, Anita and Jeannie describe stigma and discrimination of another kind — from health care professionals themselves.  The Committee has always found it difficult to understand how some professionals to whom vulnerable people turn for help could so often treat them in such a shabby way:Text Box: The health care profession is not very comfortable with any one of its own having a mental disorder.
—Sheila Hayes Wallace

 

 

 

I felt condescended to, and belittled by many of the doctors I came across in the mental health system.  —LisaText Box: In our community, the only way to get prompt psychiatric care is to attempt suicide or commit a crime.  That, in itself, is a crime.
—Jeannie

 

 

 


The health care profession is not very comfortable with any one of its own having a mental disorder.  It is kind of a “not in my back yard” attitude.  Once labelled as damaged, that worker should go “somewhere else,” not remain in this workplace. —Sheila Hayes Wallace[22]


I have waited in an Emergency Room for as long as 6 hours, in a suicidal state, while others with physical ailments have proceeded ahead of me.

The person at the desk who filled out the necessary paper work was informed of my condition.  Yet in spite of this I was made to wait as another incoming patient had physical signs of distress, blood, broken bone.

Another thing is when one finally gets in to talk to someone, it's usually the psychiatrist in training, he asks many questions then he gets in touch with the Dr. on call, then the Psychiatrist on call comes to see you and you are asked the same questions all over again.  For a person with extreme anxiety this is very frustrating and is enough to put you over the edge at which time you now are treated as a violent patient.  —Anita


In our community, the only way to get prompt psychiatric care is to attempt suicide or commit a crime.  That, in itself, is a crime.  —Jeannie

1.4.3     Stigma and Discrimination Upon Return to Work

Another form of discrimination faced by people diagnosed with a mental illness — said by many who spoke to the Committee to be prevalent in the insurance industry — applies to those seeking to enter or re-enter the workforce as part of their efforts at recovery.  Text Box: (A bank…) asked me to fill out a form, and of course one of the questions was, “Have you ever had a mental illness?” And once you tick “yes” in that box, you will be denied insurance at Canadian banks.
—Scott Simmie

 

 

 

 

Many witnesses, like Scott and Darrell, told the Committee of the difficulty they experienced in trying to obtain life, disability, or medical insurance and in filing provincial workers’ compensation claims:

In my own instance, I was off on disability, finally getting back to work and was going to get an RRSP loan.  I went to the bank, a bank I had dealt with for years, and they said they would be happy to give me a loan.  I told them I would like to get some insurance on the loan, because I was just returning to work and was not sure how long I would be there.  They asked me to fill out a form, and of course one of the questions was, “Have you ever had a mental illness?” And once you tick “yes” in that box, you will be denied insurance at Canadian banks.  —Scott Simmie[23]


 ...you are not allowed to overcome your illness or any depression that you might have had.   If you have indeed seen a psychologist or a psychiatrist at one point in your life, that will be brought out in order to diminish the claim or the extent of the claim when establishing PTSD or chronic pain syndrome, as in my case.

This abuse is so extreme, and so heavy, that I have come to the conclusion that there is no way that it could be dealt with when it is done on purpose without opening up the human rights portion of the Charter.  We have no powers as individuals to access our Charter rights.  We do not.  —Darrell Powell[24]

1.4.4     Stigma and Discrimination in Society

Perhaps the most damaging effect attributed by witnesses to stigma and discrimination was that originating in the belittling, denigrating attitudes toward mental illness and those who suffer it that seem to pervade all levels of society.  Scott, Francesca, Ruth, Diana, Patricia, Kim and an anonymous contributor are but a small sample of the individuals who shared with the Committee the injuries they have suffered from these attitudes:

Text Box: I was a counsellor, I was a substitute teacher, I was a daycare worker, I worked in a women's shelter, but once they labelled me “mentally ill” I lost all credibility. 
—Ruth Johnson

 

 

When I first began researching mental health in 1998, I went to the largest psychiatric hospital in Toronto, and on the grounds of that hospital there was a sign.  The sign was supposed to say “Dogs must be kept on a leash.”  Someone had spray-painted out the word “Dogs” and had put in the word “Nuts.”  “Nuts must be kept on a leash.”  Every time I drove by that hospital for an interview, I checked to see if that sign was there.  Patients would have seen it, doctors would have seen it, and the public would have seen it.  Eight months after I began my research, someone had finally spray-painted out the offending word.Text Box: Why do we who suffer with this debilitating disease have to suffer socially as well?
—Kim

 

 

Now, imagine a different scenario; picture a similar sign on the grounds of a synagogue.  If the word “Dogs” had been replaced by “Jews,” people would have been outraged.  The police would likely have been called, the act would have been described, accurately, as a hate crime, and rest assured, the sign would have been gone the very next day.  Yet, the sign at the hospital remained unaltered for all that time, and who knows how long it had been there before I first noticed it.  —Scott Simmie[25]


I cannot tell you how profound an impact a psychiatric label makes on your life. I mean, I lost my job and I lost my means for getting another job because I had been in the hospital.  —Francesca Allan[26]


I was a counsellor, I was a substitute teacher, I was a daycare worker, I worked in a women's shelter, but once they labelled me “mentally ill” I lost all credibility.  —Ruth Johnson[27]


Whenever someone comes out as having a mental health issue, whether it is an employer, a small business operator or a person on the street, immediately, there are no expectations of those people, and I am not exaggerating when I say that. Actually, there is a fear, quite frankly, that you might be violent.  That is the number one fear, and that is perpetuated. —Diana Capponi[28]


I have volunteered for almost 20 years now and the last three years I have been a member of the Board of Trustees of CAMH. Notwithstanding that long-term achievement and 33 years of a teaching career, when I meet people and I say that I am a recovering addict, there is a drop in credibility.  It is visible.  It is fine to be a trustee.  It is fine to be a retired teacher.  It is fine to be a grandmother, but if I say that I am a recovering addict, there is that drop in credibility.  —Patricia Commins[29]


Broken. Lonely. Hopeless. Ashamed. Rejected. Isolated. Afraid. Unsupported. Lost. Anxious. Disbelieved. Overwhelmed. Embarrassed. Dark. Pained. Desperate. Fading.

I'm a 31-year-old Canadian woman who has been fighting the disease of Depression since my late teenage years.  The words above are words that come to my mind when I think of what it's like to live as a Canadian in Canada with Mental Illness.

It's pretty sad when you sit around wishing you had any (literally ANY) other disease other than a Mental Illness.  There is so much shame, stigma and disbelief that accompany a diagnosis of a mental illness.  It's the constant justification that you're actually sick.  Why do we who suffer with this debilitating disease have to suffer socially as well?  —Kim


I shouldn't feel shame or fear or failure because I have a mental disease (Bipolar disorder).  I should be able to get help and support as any other person with a disorder or disease.  I should not need to try to educate people who do not want to learn about the illness but still have the power to make decisions about my life.  —Anonymous

 

1.4.5     Suggestions for Ending Stigma and Discrimination

Those who told the Committee about their experiences with stigma and discrimination also provided ideas for eliminating such attitudes and making society more accepting of those living with mental illness. 

1.4.5.1                Education and Awareness

Almost unanimously, participants agreed on the need for education about mental illness and those affected by it.  Patricia and an anonymous participant talked about the need for  education and how it would help to alleviate stigma and discrimination:Text Box: Only by changing our perception, removing the social stigma and understanding more about mental illness can we as a society begin to improve the treatment and care provided to the people who suffer from a mental disorder.
— Anonymous

 

 

 

Only by changing our perception, removing the social stigma and understanding more about mental illness can we as a society begin to improve the treatment and care provided to the people who suffer from a mental disorder. 

Changing our perception means opening the door of hope for thousands of Canadians.  It will mean giving the issue a higher visibility among our elected officials and a greater priority when developing our policy initiatives.  Fear of mental illness reduces resources and assistance to mental illness.
—Anonymous


The benefits and rewards of recovery can be identified by gathering information directly from recovering clients who are willing to disclose.  This is difficult.  There are not so many people in Canada who are willing to do this but there are some.  Let us find them. 

Public figures and private citizens, people from all walks of life might be motivated to speak up and share their insights, or to provide them in written form.  Many people regain their lives and go on to be fully participating members of society.  How did they do it?  What helped them the most?  What do they have to offer?  —Patricia Commins[30]

 

1.4.5.2               Stigma and Discrimination in the Media

Roman and an anonymous contributor were among the participants who suggested that the media would be the most effective means of spreading insightful information about mental illness:

Film and television have used mental illness to add drama to their productions by suggesting the character may be, or is, suffering from an illness, regardless of whether or not the character's behaviour could be attributed to other causes, either emotional or physical.  The industry must be alerted to the damage these actions are inflicting on the mentally ill, and the harm they are doing in stigmatizing persons with a mental illness.    —Roman Marshall[31] 


More media coverage on the reality of mental illness, as opposed to the sensationalism and stigmatism of it, would be beneficial.  People need to be taught that people with mental illness are not homicidal maniacs, as depicted on TV, but are friends, neighbours, professionals, etc. —Anonymous

 

1.4.5.3               Recognition of the Seriousness of Mental Illness

Many participants also emphasized the importance of treating mental and physical illnesses with equal seriousness both within the medical community and in society more generally.  Frank, Lisa, and Sheila, together with others quoted previously in this chapter, explained that mental illness is often treated differently and with much less urgency and importance than physical illness:Text Box: Mental illness is a physical illness, not some disease that enters the minds of the weak or characterless.  Like cancer, it can happen to anyone.

Let’s start treating “mental” illness as what they are.  Devastating diseases.
—Lisa

 

 

 

 

I have had occasion to sit in the Regina General Hospital emergency room with friends from my group.  We have gone home in despair.  Unfortunately we are not a high priority, and I do not know why.  Maybe if we had blood coming out of the side of our heads we would become a priority. 

I will be graphic and blunt about this:  We are not important.  We do not seem to be important to the health professionals.  I do not want to sit in another emergency room because a friend has said, “I cannot keep on living; I need help.”  I take them there and we are told to sit down. 

There is a little board that says the next non-priority patient will be seen in three to four hours.  I do not want to see that again.  This person needs a room, needs safety.  They may not need medication or anything like that, but they need safety.  They want to know that somebody cares, and an open emergency waiting room is not the place for them to be. 

We are looking and asking for respect and dignity.  —Frank Dyck[32]


Start treating mental illness as a biological illness the same as any physical disease.  When we say that someone is sick we don't say “physically ill” so why do we say “mentally ill”?  Mental illness is a physical illness, not some disease that enters the minds of the weak or characterless.  Like cancer, it can happen to anyone. 

Let's start treating “mental” illnesses as what they are.  Devastating diseases.  —Lisa


How many corporations and businesses resisted putting ramps and elevators in place?  Well, the business community did not collapse and now it is possible for people in wheelchairs and those who are people who are hearing and visually impaired to work. 

Well, you know what?  Now we need the equivalent for people who have mental needs.  We need our own “ramps,” for want of a better word.
 —Sheila Hayes Wallace[33]

 

1.5        CONCLUSION

Throughout the consultation process, the Committee heard time and time again about the hardships faced by people living with mental illness and addiction, as well as about the resilience they demonstrate.  Amidst the expressions of frustration, loneliness, and abuse, there were compelling stories of courage, hope and triumph over adversity.Text Box: When we do speak, please do not avoid us.  What we have is not contagious.
— Sheila Hayes Wallace


People with personal experience with mental illness or addiction have been full, contributing partners to this first-of-its-kind study.  Without their courage to step forward and share their stories with the Committee, this report would not have been possible.  The Committee is most grateful for their willingness to share their intense and often painful personal experiences in an effort to improve the mental health, mental illness and addiction services in Canada for themselves and for others. 

When we do speak, please do not avoid us.  What we have is not contagious.  —Sheila Hayes Wallace[34]


CHAPTER 2:
VOICES OF FAMILY CAREGIVERS

2.1        INTRODUCTION

The worst is not being able to help because you aren’t part of the solution.
—Darlene

Of the many submissions received by the Standing Senate Committee on Social Affairs, Science and Technology, a great number came from family members who provide unpaid, non-professional care to those living with mental illness and addiction.  Like Darlene, many caregivers feel excluded, ignored by the mental health, mental illness and addiction system in Canada.  Ironically, it is these same family members who often provide most of the care and support to people living with mental illness. 

Families spoke to the Committee of their multiple frustrations: with the mental health system; with the effects that caring for a mentally ill individual have on families; and with securing what they need in order to provide the best possible care for their loved ones.  Committee members were struck not only by the impact that mental illness can have on the life and health of caregivers, but also by the fact that the enormous efforts of caregivers often go unrecognized and unappreciated by professionals and others in the mental health system.

2.2       EXPERIENCES WITH MENTAL HEALTH AND ADDICTION SERVICES

Mary, Donna, Doris, Bonita, and Carolyn shared with the Committee the difficulties involved in struggling on behalf of a family member exposed to poor and delayed treatment by the mental health system; they told stories of their loved ones seeking help, only to be turned away or brushed off:Text Box: In the end, just to sum up, the tragedy does not lie with the disability; that is not the tragedy. The tragedy is in the way society treats the child and the family that is dealing with the disability.
—Donna Huffman

 

 

 

When our son was 24, he killed himself.  Just maybe, if he had gotten proper care and a psychiatrist who was truly interested in what was bothering him back then, maybe he would be with us today.  —Mary


Unfortunately, access to care is a daily struggle.  All the services you get in terms of your child with a psychiatric illness are as a result of hard- fought, hard-won battles. 

[…]

In the end, just to sum up, the tragedy does not lie with the disability; that is not the tragedy. The tragedy is in the way society treats the child and the family that is dealing with the disability. 

We can handle Alex. So far, we have been able to do so with the limited amount of support that we have been able to get, and we are very appreciative for that limited support.  What we cannot do is constantly fight to get every single service.   —Donna Huffman[35]


In September 1984 I received a phone call from my son's landlady in Toronto advising me he was in a hospital psych ward after attempting to fly out of the window of his upstairs apartment.  I was convinced then that it was the worst day of my life but of course it was not.  It was the beginning of a catastrophic rollercoaster ride, culminating nine years later with him being judged not guilty of a second degree murder charge on the grounds that he suffered from a mental disorder. 

When he was informed of what he had done, he spent three days throwing himself against the walls of his jail cell in an agony of intense remorse.  During that time and during his four-and-a-half years at the Forensic Psychiatric Institute in Port Coquitlam he never received any psychological counselling other than a few group counselling sessions initiated by the institute's very kindly pastor.  —Doris Ray[36]


I have taken my son into the emergency room in a manic state and, trust me; it is an awful thing to do.  I mean, he is walking around telling people they are witches and grabbing the magazines out of their hands and scaring them and I am sitting there thinking oh, my God, what is he going to do. 

I had to argue with the doctor about his condition.  They tried to tell me that he is on drugs or he is this or that. 

I said: “Look, I know what he is.  I know he is mentally ill.  He has records, can't you get them?”  No, it was just too much trouble.  You have to get into a major argument with these people.  So something needs to change there, that is for sure.  —Bonita Allen[37]


I speak as the mother of a young woman who died after eight years adrift with severe anorexia-bulimia in a medical system that basically ignored this most deadly of the mental illnesses.

[…]

Within the mainstream of the medical system, Danielle often faced hostility from her medical treatment providers.  She was treated as if this was some kind of wilful teenage thing, some kind of hissy fit that she was having.  Not true. […] Every bite, every step was a genuine struggle for her.

Text Box: I speak as the mother of a young woman who died after eight years adrift with severe anorexia-bulimia in a medical system that basically ignored this most deadly of the mental illnesses.
—Carolyn Mayeur

 

 

 

 

In addition, she did not receive care for anything not deemed part of the problem.  Her bones deteriorated to the point where she was off the chart, but she was not eligible for the bone medicines because they only went to 65-year-olds. 

[…] She did not receive use of the air bed, although they brought one into her room in the hospital in the hour before she died to relieve the pain of the bones and the muscles which had all withered so that she had no range of motion.

[…]

One sarcastic nurse said to us, “Well, what exactly do you expect of us?” and I said, “I would like to find a cognitive behavioural therapist for Danielle and a psychiatrist who could work different medications until he found the right one for her severe suicidal impulses five days every month.”  The nurse looked at me and said, “You are being absolutely unrealistic.”

[…]

Danielle was turned away three times at emergency rooms when she went there scared that she might act on these suicidal impulses, because she wanted to live.  It was not an attention-getting thing.  They laughed at her plans.  […] One time, five days later, she had a good plan and she overdosed.  I found her.

When she was in Toronto for two years waiting for her turn that never came up, at our expense in a rented room, she would go to the hospital emergency and stay between the double doors, because there she could wait safely until the impulse passed.  She knew it would pass, but she had to be safe until it did.  —Carolyn Mayeur[38]

 

 

Carol’s was one of the few hopeful messages we heard: 

My experience with mental health services is a result of my older son Peter being diagnosed with schizophrenia when he was 19.  Peter is now 45 and I count him as a sort of success story, given the seriousness of his condition. 

Since those days, Peter has been put on more modern medication. He has gained a university degree in Mathematics (it took 20 years); he works as a teaching assistant in [a university] math department […]; he takes benefit from the Centre for the Disabled at that University; he continues his education with law courses; he works as a security guard sometimes; he volunteers for many causes; he lives with a woman who also has schizophrenia; and he counsels and advises other people he knows who have this condition or some similar mental problem.  —Carol

2.2.1     Lack of Information

Heather and Donna communicated to the Committee their dissatisfaction with the confusion and lack of information about where to turn for help when a loved one needs it.  Many family caregivers explained that the greatest difference between a mental illness and a physical illness is that, for the former, it is so much more difficult to find information and assistance:Text Box: Trying to get help is a frustrating, lonely journey.  Most people make many, many calls in an effort to get help.  When you finally find something that looks hopeful, you get on a ten month waiting list… it is like showing up in emergency with a broken bone and being told, yes, it is really broken, so try and do what you can with it and we will see you in ten months.
—Heather Dowling

 

 

 

 

 

When your child breaks an arm or a leg, you know where to go.  You know that when you go there, someone will help you.  You go to the emergency department and the nurse sees you, the doctor comes, you have an x-ray, and either you are given a cast, or worst luck, you need surgery, but you get help. 

[…] If you have an eating disorder, it is not like that.  You do not know where to go.  Your parents do not know where to go for help.  Lots of doctors and nurses do not know what to do for you.  Many of them blame you for being sick.  But you are sick, really sick.

Trying to get help is a frustrating, lonely journey.  Most people make many, many calls in an effort to get help.  When you finally find something that looks hopeful, you get on a ten month waiting list… it is like showing up in emergency with a broken bone and being told, yes, it is really broken, so try and do what you can with it and we will see you in ten months. 

[…] That seems a ludicrous example, no one would ever do that, nor should they.  However, this is what happens with mental illness all the time, and somehow it is acceptable. 

Text Box: (…) I often wish my son had been born blind instead, because people recognize that fact. They would take one look at my son and say, “Okay, we know what it is, we know what the problem is, we know the services that he needs,” and it would be that, and I would not have to spend so much time advocating and begging for help.
— Donna Huffman

 

 

 

 

 

At age 11, my daughter's treatment and ours as a family would have been very different if she had cancer rather than an eating disorder.  […] The experience of having a child with a mental illness has all of the fear, doubt, searching for answers, trying to cope, stress, and emotional trauma as having a very physically ill child, without any of the supports that a serious physical illness receives. 

You feel very much alone, and left alone.  —Heather Dowling[39]


I just know myself — and this sounds horrible — but I often wish my son had been born blind instead, because people recognize that fact. They would take one look at my son and say, “Okay, we know what it is, we know what the problem is, we know the services that he needs,” and it would be that, and I would not have to spend so much time advocating and begging for help.
—Donna Huffman[40]

2.3       THE IMPACT ON FAMILIES

Family caregivers shared with the Committee numerous stories of the heavy toll on the family imposed by caring for a loved one living with mental illness or addiction, in particular the physical and emotional effects of attending to a relative living with mental illness and the lack of recognition and support for what they do.Text Box: When you face the reality that there is basically no treatment that you can find for your child, it just becomes totally unbearable.
— Phyllis Grant-Parker

 

 

 

2.3.1     Physical and Emotional Effects

Carolyn, Joyce, Sheila, Lembi, and Phyllis described some of the physical and emotional effects experienced by family caregivers:

Actually, all three of us in our family have developed chronic illnesses because of the eight years of stress living with somebody who at the end of her life looked like she had been in a concentration camp, and the incredible, non-productive stress of trying to access medical care and being told that we were out of line.  —Carolyn Mayeur[41]


As a young person, that is what my daughter said.  Why would she bother taking her drugs, if that is all they could offer her?  It is a life on medication, with no friends, living on social assistance, no future.  What was the point of living?  I had to agree with her.  I always thought that if it did end up that she did kill herself, I could forgive her, because she would be at peace.
—Jan House[42] 


It is terrible to say, but if my daughter killed herself, I would understand. My daughter has said to me, “I do not know what there is for me when I am hearing these voices and I cannot do this and I cannot do that. Why am I here? I would be better off dead.” We have had intellectual conversations at times where she has had insight and can be quite academic about it, and it is very hard to come up with a reason to live.  —Sheila Morrison[43]


...my husband must re-qualify [for the tax credit] each year.  I cannot tell you how stressful that is for him.  He has to go to the doctor and ensure that the form is filled out correctly so that there will not be any question about it.  This is a hugely stressful annual event.  It is stressful for him and, talking about contagion, it is stressful for me.  It is as though I take on that kind of stress too, because over the year, there is so much stress in coping with his stress that I cannot draw the line as to where his problem ends and mine begins.  His problem is eventually my problem.  —Lembi Buchanan[44]


When you watch the impact on your child of a psychotic break and you learn that he or she has a serious mental illness, one that they are going to have to learn to manage for the rest of their lives, it is devastating as a parent, absolutely devastating.  When you face the reality that there is basically no treatment that you can find for your child, it just becomes totally unbearable.  —Phyllis Grant-Parker[45]

By contrast, Mark spoke about the positive impact that finding effective services for a loved one can have on a family:

After the last 15 years, my son Kenny, who suffers from severe obsessive-compulsive disorder, now fits into the community after years of family disruption, in and out of hospitals, from one psychiatrist to another, and searching in vain for direction.  Because of his compulsive disorder, we are constantly at odds with no cooperation from Kenny.  He was living on the streets, with the constant anguish and panic of not knowing where he was; was he safe?  At times he would show up in my studio, a street person, my son.

In our desperate search, we finally were able to connect my son into the system providing mental health services of supportive housing.  […] No words can express the feelings and relief a parent has to have their son or daughter function normally and enjoy life connected to community and especially family.  We take comfort in knowing that when we pass on, our child will always have a safe, secure, affordable home.  —Mark Shapiro[46]

2.3.2    Lack of Recognition and Support for Caregivers

Even though family caregivers spend endless hours searching tirelessly for services and treatments and advocating on behalf of their loved ones, their efforts are often unappreciated or ignored.  Joyce, Betty, Mike and two anonymous contributors shared their frustration with the lack of recognition and support for family caregivers:Text Box: I will say this much:  If families are not at the centre of developing services for families, they will not work.  We are pretty tired of providing the services, doing the work and being ignored.
— Betty Miller
Text Box: Many people in the mental health field don’t appreciate the value that family members can be in the recovery process. 
— Mike

 

 

 

...as a caregiver, you are in jail as well, because you are afraid to go anywhere for fear that you are going to miss a call — and you do not have the trust that you need to have in the system.  Very often, we have felt very hopeless, very abandoned and ignored.  I think that really does need to change. —Joyce Taylor[47] 


Please, as we shift our paradigm to put clients truly in the centre, remember who has been providing the bulk of mental health care and addiction care.  We have, we the families and the friends, to the tune of billions of hours of “informal” care each year, and many billions of dollars saved in the system.  Just take this as meaning that families are unsupported, unpaid, and ignored.

[…]

Ask families what they need and they will tell you.  Ask us to help develop a service delivery system.  We will.  We know the system and we know what works and what does not.  We have great ideas. 

I will say this much:  If families are not at the centre of developing services for families, they will not work.  We are pretty tired of providing the services, doing the work and being ignored.  —Betty Miller[48]


Many people in the mental health field don’t appreciate the value that family members can be in the recovery process.  —Mike


Many family members are the sole support services of the mentally ill while trying to provide support to other aging family members and working full-time jobs.  The support systems to assist family members are non-existent.  Special efforts must be made to reach family members of the mentally ill.
—Anonymous


Families play a vital role in the recovery of a consumer.  A majority of families live with the consumer 24/7 and so have a unique knowledge of the family member who has the mental health problem.  Families provide housing, social, financial support, help in navigating the system etc., and in essence are the first line of support.

 They have a unique role in the system — a support to the consumer and at the same time because of their knowledge can work with professionals.  This role must be recognized and families integrated not only at the support level but in the policy and implementation levels as well.  —Anonymous


2.4       WHAT ARE FAMILY CAREGIVERS ASKING FOR?

Because families often provide a great amount of unpaid and unrecognized care and support, the Committee believes it is essential to listen carefully to their suggestions.  Family members told the Committee of their need for a variety of things: better information and education; income support; peer support; respite; access to their family member’s care plan and to be included respectfully by physicians and others in discussions of how and by whom that plan will be implemented.

2.4.1     Information and Education

Darlene and an anonymous contributor illustrated the need for more information and education about what their loved one is experiencing and how to help him or her:Text Box: My son was diagnosed with schizophrenia in 1997.  He was sent home after only 3 days in hospital and I had no idea where to begin.  No information was provided by the hospital; no follow-up phone call or meetings — merely the advice that our local MB Schizophrenia Society had material for me to read.
— Anonymous

 

 

 

 

When 1 in 100 people has schizophrenia, is it too much to ask to have us all know what it is?
—Darlene


My son was diagnosed with schizophrenia in 1997.  He was sent home after only 3 days in hospital and I had no idea where to begin.  No information was provided by the hospital; no follow-up phone call or meetings — merely the advice that our local MB Schizophrenia Society had material for me to read.  —Anonymous

 

2.4.2    Income Support

Joan, Phyllis, Norrah and an anonymous contributor shared stories of the financial hardship that is often associated with caring for a relative living with mental illness to whom income supports are not available:

We need to take into consideration the financial burden mental illness brings to families.  Disability pensions for the mentally ill are ridiculously low and most families dig into their pockets to provide for basic needs such as new shoes, dental care, health care items and spending money. —Joan Nazif[49]


...while we were very fortunate as a family to get access to this kind of support, it was at a tremendous family cost.  It was a five hour drive from Ottawa for us to see our son.  The emotional impact of having him ill that far away was tremendous. 

Over the 14 months we drove 49,000 kilometres, lost 50 per cent of our family income, closed a family business, and had $29,000 worth of out-of-pocket expenses.  —Phyllis Grant-Parker[50]


Most of the families I know in this province are suffering beyond what you can conceive of.  They are selling their homes, if they have them to sell. 

I will speak of my own situation.  I have nothing.  I will remain in poverty for the rest of my life. […] I will never own a home, a decent car.  I may never even be able to hold down a decent job because of my son's disability.
—Norrah Whitney[51]


I have a child with autism/ADHD and several medical diagnoses.  The simple fact is that if he needs surgery to save him, I can get it in 6 hrs or less.  Text Box: We need to take into consideration the financial burden mental illness brings to families.  Disability pensions for the mentally ill are ridiculously low and most families dig into their pockets to provide for basic needs such as new shoes, dental care, health care items and spending money.
— Joan Nazif

 

 

 

 

I have no access to any treatment to help him be a productive member of society unless I fund all treatment myself.  However, if I just choose to put him on drugs and let him sit in the corner, the province will willingly provide.  —Anonymous

 

2.4.3    Peer Support

George described how important peer support is to family caregivers to share fears and frustrations and to learn coping skills from those with similar experiences:

We try to convey to them that they are not alone on this journey; they have the love and support of all at the meeting to help them through their grief.  I have seen people come to a meeting for the first time so devastated that they could not speak, and months later, I have seen the same people laugh for the first time without fear of guilt and shame.  —George Tomie[52]


2.4.4    Respite

Betty and Annette discussed the importance of breaks, of respite care for family caregivers.  Many contributors told the Committee how difficult it is to find trustworthy and knowledgeable caregivers whom they can comfortably leave in charge of their loved ones:Text Box: Families are tired.  We need help.  We are getting old and we are afraid that our loved ones will be left to fend for themselves on the streets; and those streets exist in both rural and urban communities.
— Betty Miller

 

 

 

 

Families are tired.  We need help.  We are getting old and we are afraid that our loved ones will be left to fend for themselves on the streets; and those streets exist in both rural and urban communities. Text Box: Families need respite care; they need to be shown that not being able to care for someone isn’t the same as not caring for someone; they need to feel that there is somewhere for them to go when they simply can’t cope anymore.
— Annette

 

 

 

 

Families have legitimate fears and distinct needs of our own. […] Maybe all we needed was an hour or so of someone helping us figure out our options. Understand that we are a little fatigued, we need a break. Maybe someone can take over for us for a while, give us some respite. —Betty Miller[53]


Families need respite care; they need to be shown that not being able to care for someone isn’t the same as not caring for someone; they need to feel that there is somewhere for them to go when they simply can’t cope anymore.
 —Annette

2.4.5    Providing and Accessing Personal Health Information

A great number of respondents stressed that access to information about their loved one’s care and treatment was one aspect, perhaps the most important, of providing the best care possible for a family member suffering from a mental illness and/or addiction.Text Box: Any mental illness extracts a terrible toll on family members.  Family members require information, education, and support.  Only when absolutely necessary for the sake of the client should family members be excluded from the treatment process.
— Ruth Minaker

 

 

 

Brenda, Ruth, Phyllis, and an anonymous respondent spoke of the helplessness they felt as a result of being denied access to information about the care and treatment of their loved one.  To compound their frustration, information pertinent to their loved one’s care that they wanted to share with health care professionals was often dismissed or refused. Their exclusion is exacerbated by the application of laws that are intended to protect the rights of the individual but, in some cases of mental illness, increase the risk of serious harm to that individual and others:

I have a 25 year old son who has been diagnosed with paranoid schizophrenia.  He would go on the medication, then feel he was cured, stop the medication and his symptoms would get worse.

Because of the laws he could not be forced to stay on his medication and would eventually go back into the hospital on a form, in which an advocate would go in and ask him if he wanted to be there and of course he would say no. 

He is now 25 years old, the voices in his head have become unstoppable and louder for him.  His delusions have become increasingly violent and he has such beliefs that he can live forever if he drinks human blood (because God said, drink my blood) and that if he dies he will rise again.  I assure you that I and my family, his probation officer, and his two psychiatrists have no doubt that if our son is not treated medically for his illness that he will eventually kill either himself or someone else. 

He self medicates himself with drugs, as is common with this illness, to stop the 20 screaming voices in his head. 

As a parent I am unable to help my son who so desperately deserves treatment because HE is the only one who can make this decision.  All doors are locked to the people who love him the most.  His family.  We have to stand by and watch him disappear into someone we don't know and who we all now fear for our lives. 

Yes… this is our worst life experience.  Dealing with the law taking the rights away so that we cannot help our loved one.

I think if a loved one proves time and time again, and in our case when his doctors say he is a danger to himself and others, and cannot function without help, that a loved one of the mentally ill person should be able to step in and be his voice to make him take his medication and to make sure his medical needs are taken care of.

Currently our son is back in jail for threatening our lives.  Do we think he will follow through with these plans?  Yes we think so, so do his doctors, so does his probation officer, so do the police.  You have to remember that when a paranoid schizophrenic is off his medication he doesn't see family, friends as who they really are but in his delusional mind they are people that are trying to kill him. 

My son deserves to be treated for his mental illness.  But as the law stands now at this point they will wait for him to carry out his threats, and he will, and then all will suddenly stand up and say wow, why didn't we see this coming. 

So my simple answer to what could help make things easier on family members is simply to allow the family to help their loved one get better.  Untie our hands and hear our pleas, give us back our loved one.

Is it not enough that they are sick?  Do we have to punish them for being sick? 

My biggest concern is that as a parent to a young man that we love so much, we cannot help him.  That we have to watch him get worse and worse every day.  We have to watch him being hurled into a justice system that he has no understanding of what wrong he did.  He did what the voices told him to do, he did things out of desperation, he was hungry he needed food, he was scared, he was fighting for his life.  Kill or be killed. 

We know that when he calls us mom and dad he knows who we are, his parents.  But when he refers to us by our first names we know that he thinks of us as his enemies. We have lived with locks on our bedroom doors for a few years now.  —Brenda Valcheff


Any mental illness extracts a terrible toll on family members.  Family members require information, education, and support.  Only when absolutely necessary for the sake of the client should family members be excluded from the treatment process. 

[…] Long after the treatment team has delivered its services, in most cases the family will still be involved in the life of the client.  —Ruth Minaker[54]


I think it is essential that families be involved because we hold the benchmark of our family member.  We know the person before their illness, and this illness can, during the early treatment time, seriously change behaviours.  The medical team only sees the sick person. 

Hence, we hold the benchmark, because true recovery is really to return a person to him or herself, to come back to who they were as close as possible.  Therefore, parents and families need to be welcomed as part of the team…
—Phyllis Grant-Parker[55]


I have a son with a mental illness.  He is an adult, nearly 40 years old. We have had to take care of him, have had suicide watch a number of times, taken him to emergency numerous times, made sure he got to appointments, supported him emotionally, physically, financially and yet when it comes to input in his psychiatric care we are not even considered. 

Our son can spout off lies to his Dr. and there is no way we can have input because he is an adult.  Dr.'s need to talk to families or caretakers to ensure that the information they are getting from the consumer is accurate.
—Anonymous

2.5       CONCLUSION

Family members who provide care and support to relatives living with mental illness and addiction face a two-fold challenge.  First, they must suffer with their loved ones through their daily hardships and use their limited personal resources to try to alleviate them.  Second, they must contend with a mental health system that often excludes them from involvement in the information-gathering and decision-making processes while simultaneously leaving them to serve as the fail-safe mechanism to provide unlimited, unpaid care, filling in the cracks that open when any part of the so-called system fails.  Text Box: Do the people in public office need to lose a child to understand how desperate the situation of mental health is in Canada?  Unfortunately it seems the only people who really care about this are those who have experienced it first hand.
— Ginny

 

 

 

 

Family members who provide care and support to relatives living with mental illness have their own unique perspective on the mental health system and its reform.  They have shown the Committee that despite their frustration and fatigue, they will continue to search for assistance for their loved ones and to provide it themselves when they come up empty-handed.  The Committee acknowledges the contribution to this study made by these individuals.  Their stories are valid; their voices must be heard; their recommendations must be acted upon. 

Do the people in public office need to lose a child to understand how desperate the situation of mental health is in Canada?  Unfortunately it seems the only people who really care about this are those who have experienced it first hand.  —Ginny


PART II
Overview

CHAPTER 3:
VISION AND PRINCIPLES

 

Given that a model tends to shape our perception of circumstances, it substantially influences how and what services we seek to construct, be they in mental health or in physical health.[56]

After two and a half years of studying the mental health and addiction “system” in Canada, it is still striking to the Committee how many key questions about that system cannot be easily answered. They range from factual matters (e.g., how much is spent annually in each jurisdiction on mental health services and supports?) to fundamental philosophical, medical and scientific issues relating to the nature of mental illnesses.

The Committee has heard many different points of view on the whole range of questions, all argued with passion, integrity and eloquence. The previous two chapters bear witness to the richness of this testimony.

In recent years, much progress has been made in developing new medications and new treatment methods for many mental illnesses. As well, people living with mental illness and their families have increasingly been making their voices heard and have rightly insisted on actively participating in making the decisions that affect them. Still, there is a very long way to go. This is why, in the background reports released in November 2004, the Committee clearly affirmed that maintenance of the status quo with regard to mental health, mental illness and addiction in Canada is not an acceptable option.

In the Committee’s view, what is needed is a genuine system that puts people living with mental illness at its centre, with a clear focus on their ability to recover. This chapter explains what the Committee means by recovery and lays the foundation for what follows in the report.

3.1        INTRODUCTION

3.1.1     The Limitations of this Report With Regard to Substance Use Issues

The Committee believes it is necessary at the outset to acknowledge something that will become quickly evident to the reader of this report. The Committee has not been able to devote as much attention to substance use issues as it intended when it embarked on its study of “mental health, mental illness and addiction.” This report therefore focuses primarily on mental health issues.

There are, of course, many areas of overlap between mental health and substance use issues, not least of which involve people living with both mental health and substance use disorders. It is quite common for people to suffer from both. Research has shown that 30% of people diagnosed with a mental illness will also have a substance use disorder in their lifetime and 37% of people with an alcohol use disorder (53% who have a drug use disorder other than alcohol) also live with a mental illness.[57] 

The relationship between services for mental illness (such as treatment for depression, anxiety disorders and schizophrenic disorders) and services for substance use disorders (including treatment for problematic alcohol use, withdrawal management services, methadone maintenance for opiate addiction and needle exchange programs) has been the subject of much discussion and debate across Canada. In previous decades, services for the two types of disorder were administered separately; they developed divergent treatment philosophies, used different terminology and constituted different ‘cultures’ that  were often in conflict.

The ‘culture clash’ between mental health services and addiction services has created substantial problems for clients, particularly those with concurrent disorders. As a result of conflicting approaches to treatment, clients have often received confusing and inconsistent information and advice. It has been common for them to be excluded from mental health services if they admitted to substance use problems. Similarly, clients were often excluded from addiction treatment programs if they admitted to the use of antidepressant medications.

Because of the importance of substance use issues in general, and of this overlap in particular, the Committee has devoted a Chapter of this report to substance use issues, and has attempted to address areas of common concern at various points throughout the report. Moreover, there is an important recommendation in Chapter 16 that the federal government inject an additional $50 million per year in concurrent disorder programs.

Despite this, however, the Committee is acutely aware of the limitations of this report with respect to substance use issues. This report only scratches the surface of many substance use issues that deserve a much fuller treatment. There are also many places where the Committee has been unable to examine fully the similarities and differences in approach in the mental health and substance use fields. It would clearly not be appropriate for the Committee to assume that conclusions it has reached after carefully considering the mental health evidence necessarily apply with respect to substance use issues. Some may apply, but the Committee has attempted to avoid any unwarranted assumptions in this regard.

3.1.2     Some questions of “language”

The language used to speak about an issue, and the models employed to understand it, have a significant bearing on the kinds of policy proposals favoured or endorsed subsequently. Nowhere does this ring more true than with respect to mental health, mental illness and addiction.Text Box: The language used to speak about an issue, and the models employed to understand it, have a significant bearing on the kinds of policy proposals favoured or endorsed subsequently.

 

 

 

This report is about mental health, mental illness and addiction. How, then, should this report refer to the people most directly affected by mental illnesses and addictions? As the Committee noted in its interim report, there is no single, easy choice:

Traditionally, individuals with mental illness and addiction being cared for by physicians are called patients.  Other health professionals often refer to such individuals as clients or service users.  The individuals may describe themselves by a number of terms, commonly consumers and survivors.  Consumers usually refer to individuals with direct experience of significant mental health problems or mental illnesses who have used the resources available from the mental health system. 

In its initial reports, the Committee chose to use the term “people living with mental illness” as its broadest reference. It also used the term “patient/client” where relevant. It is important to clarify further how these various terms will be used throughout this report. Text Box: In addition to “people living with mental illness” as a generic term, the Committee will also employ the phrase “people with direct experience of mental illness.”

 

 

 

In addition to “people living with mental illness” as a generic term, the Committee will also employ the phrase “people with direct experience of mental illness.” Other terms will be used as appropriate. The term “patient,” for example, can be used when referring to people who are actually receiving medical treatment. Used as a general term, however, it conveys an impression that is overly medical; the Committee heard repeatedly, and compellingly, that more than medicine is involved when dealing with mental illnesses. Text Box: The Committee will use the word “consumer” to refer to people who are using available mental health supports and services. It will not be used, however, to refer to all those living with mental illness.

 

 

 

An anonymous participant in the Committee’s second e-consultation put it this way:

In making your final recommendations, I hope the Senate Committee will acknowledge that mental health care is more than psychiatry and clinic services. Though those things are extremely important, they can only be helpful as part of a broader community support system which adequately addresses the needs of mental health consumers. —Anonymous

For her part, Jocelyn Green, Director of Stella Burry Community Services in St. John’s, pointed to the potentially beneficial impact of a broader approach:

The formal mental health system is still too hierarchal and pathology-based.  Yes, obviously, there are severe, legitimate mental illnesses that need treatment and medication, but I think we often fail to factor in the systemic roots of many mental health problems, such as poverty, abuse, discrimination, the lack of child care and affordable housing.  I think if a lot of those issues were addressed, certainly a lot of the people that are coming through our formal systems would not need to be there.  —Jocelyn Green[58]

The term “consumer” poses similar difficulties. The Committee will use it to refer to people who are using available mental health supports and services. It will not be used, however, to refer to all those living with mental illness. One reason is that the majority of those with a mental disorder or substance use disorder, as shown in a recent national survey conducted by Statistics Canada,[59] do not access mental health services or supports. Clearly, calling all people living with mental illness “consumers” is inaccurate; the same limitation applies to the term “client.”

The Committee is also sensitive to the fact that the term “consumer” has a variety of meanings and is not liked by many to whom the designation might apply. As one respondent to the Committee’s e-consultation wrote:

I do not like the word “Consumer” — I find that stigmatizing. Other people who have illnesses are not defined in this manner. It gives the impression that because of our illness we overuse services. The word makes me think of a fire consuming that which sustains it. It has a very negative connotation and I think it should be dropped. People with personal experience with mental illness is quite adequate… just like people with personal experience with cancer or any other number of known diseases.   —Anonymous

Others pointed to the many commercial overtones of the term. For all these reasons, the Committee believes that it is not the best term to use to refer in the broadest way to all those who are living with mental illnesses. In this report, therefore, the Committee will use the term consumer only to refer to those who are in fact using available mental health supports and services, or when speaking about groups and individuals who refer to themselves as consumers.

 

3.1.3     The Mental and Physical Dimensions of Illness

People living with mental illness and addiction have faced, and continue to face, stigma and many forms of discrimination that compound the effects of their illnesses. As the Committee previously noted, this systematic discrimination is one explanation for the fact that  mental illness, in general, is not often treated with the same degree of seriousness as physical illness.[60]  This situation must be redressed. Text Box: People living with mental illness and addiction have faced, and continue to face, stigma and many forms of discrimination that compound the effects of their illnesses.

 

 

 

The Committee senses that there is, in fact, a broad consensus in favour of equity of treatment among Canadians. Most would agree that having providers and others treat mental illness with the same seriousness as physical illness is part of the fundamental entitlement of people living with mental illness to the same rights and privileges as all other Canadians. Achieving equity of treatment would mark an important step in combating the stigma associated with mental illness and addiction and the discrimination against people living with them.

But it is important to clarify what “treating mental illness like physical illness” really means. There is nothing approaching universal agreement on how mental and physical factors influence the state of our mental health. Indeed, there are many different ways in which social, environmental, psychological, and biological factors are thought to interact in the development of mental disorders, although most people seem to agree that mental illnesses almost always entail some combination of these factors.

Text Box: (…) the Committee believes it is extremely important to stress the significance of what are called the social determinants of health in understanding mental illness and in fostering recovery from it.

However, different emphases placed on the role of these four factors can and do lead to very different approaches to mental health policy. For example, someone who believes that the key to “curing” mental illness is an understanding of the underlying functions of the brain, would be much more likely to support spending scarce research dollars on neurophysiology than on studies of the impact on individuals of the social determinants of mental health.

 

Text Box: What the Committee means, then, by treating mental illness like physical illness is best understood to mean that both types of illness must be treated with equal seriousness, by providers, by all Canadians — and particularly by governments.In the Committee’s view, it is essential to recognize that in treating mental illness comparably to physical illness it is not necessary to treat them as if they were identical to one another. Mental and physical illness are both like and unlike each other. There are key similarities and key differences, many points of overlap, but also features that are unique to each.

In particular, the Committee believes it is extremely important to stress the significance of what are called the social determinants of health in understanding mental illness and in fostering recovery from it. The Committee was repeatedly told that factors such as income, access to adequate housing and employment, and participation in a social network of family and friends, play a much greater role in promoting mental health and recovery from mental illness than is the case with physical illness. As well, it is important to see that the direction of causality goes both ways, from the mental (psychological, emotional, etc.) to the physical (neurobiological) as well as from the physical to the mental.

What the Committee means, then, by treating mental illness like physical illness is best understood to mean that both types of illness must be treated with equal seriousness, by providers, by all Canadians — and particularly by governments. People who are living with mental illness and addiction must be accorded respect and consideration equal to those given to people affected by physical illnesses. The Committee has sought to make this one of the guiding principles that underpin this entire report.


3.2       RECOVERY

Text Box: The Committee believes that recovery must be placed at the centre of mental health reform.This report focuses on facilitating the recovery of people living with mental illness and addiction. Widely documented in the field of addictions, the idea of recovery has been applied only relatively recently (over the past decade) to mental illness. The goal of recovery for people living with mental illness has nonetheless gained considerable acceptance in that time.

 

The Committee noted previously that:

Recovery is not the same thing as being cured.  For many individuals, it is a way of living a satisfying, hopeful, and productive life even with limitations caused by the illness; for others, recovery means the reduction or complete remission of symptoms related to mental illness.[61]

Text Box: The Committee is aware that not everyone living with a mental illness will be able to recover, but, (…) believes recovery to be the primary goal around which the mental health delivery system should be organizedThe Committee believes that recovery must be placed at the centre of mental health reform. Studies have shown that even people with the most severe mental illnesses who have been decades under institutional care, can and do recover.[62] Long-term studies of the impact of serious mental illness have demonstrated that a significant number of affected people are able to regain full function.[63]  Research carried out by the National Empowerment Centre, based on in-depth interviews with people diagnosed with schizophrenia, bipolar or schizoaffective disorders, confirms the capacity for recovery.[64]

Although the term recovery also has a number of drawbacks, the Committee nonetheless believes it is the most appropriate one for all the reasons outlined in this section. The Committee is aware that not everyone living with a mental illness will be able to recover, but, as explained below, it believes recovery to be the primary goal around which the mental health delivery system should be organized.[65]

Advocacy groups have been central in promoting the focus on recovery. In this regard, a participant in the Committee’s e-consultations commented:

Surprisingly when considering the history of psychiatric treatment recovery can be seen as a radical concept. The demand to see the human potential of consumers and the expectation that help will lead to recovery was spawned by the consumer and family movement.  —Anonymous 

Kim Baldwin, Director of Mental Health and Addictions Services for the St. John's region, also noted that:

“Recovery” is a term we have used in the addictions field for a long time and have been getting to know it in terms of mental health as well.  It is a concentration on wellness as opposed to focusing on the illness.[66]

Numerous witnesses testified about the significance of this shift of focus, including Jean‑Pierre Galipeault, owner of the Empowerment Connection in Dartmouth, Nova Scotia, who gave the Committee a sense of the far-reaching implications of adopting a recovery framework:

There are different definitions of recovery, but my business, The Empowerment Connection, defines recovery as, “[o]ccurring when a person's psychiatric diagnosis or emotional and psychological trauma is no longer the central focus in that person's life, but simply becomes a part of who that person is.”  We must remember that people also have to face the task of recovering from the effects of external and internalized stigma, learned helplessness, institutionalization, poverty, homelessness and the wounds of a broken spirit.[67]

The histories of people diagnosed with a mental illness are extremely varied; a wide variety of treatments, services and supports can assist recovery.  For most consumers of mental health services it is their family physician who is the first, and often only, port of call.[68] Having access to psychiatrists, psychologists, nurses and other health professionals can also make an invaluable contribution to the well-being of people living with mental illness. At the same time, witnesses also pointed to the need for other kinds of services and supports to be available, as Raymond Cheng (a consumer and peer advisor) noted:

…what people need sometimes is a safe and comfortable place, open at hours they want, accessible to their needs, and having a feeling of community and sharing food, talking to one another, laughing together, and helping one another.[69]

Recovery has increasingly been embraced within the broader mental health sector,[70] as well as in government circles. For example, as the Committee noted in its review of mental health policies and programs in other countries, the goal of fostering recovery was placed at the centre of a recent national mental health report in the United States.[71] In practical terms, one of the attractions of a recovery orientation is that it may help create a framework within which services can be meaningfully measured and evaluated.[72]

 

3.2.1     The Need for a Recovery-Oriented System

Text Box: Very broadly, recovery suggests that the goal of mental health policy should be to enable people to live the most satisfying, hopeful, and productive life consistent with the limitations caused by their illness.Two models of recovery have been developed: the Psychosocial Rehabilitation Model and the Empowerment Model. The first arose within the professional community, while the second has largely come from the consumer advocacy movement. Although the two models are similar in some respects, there are also important differences. Often used interchangeably by planners, depending on how they are applied the philosophical differences between the models can result in the development of different approaches in service delivery. The two models are described in more detail in the appendix to this chapter.

Drawing on these two models,[73] the Committee has concluded that a policy approach based on the idea of recovery must acknowledge the following:

§         Each person’s path to recovery is unique;

§         Recovery is a process, not an end point;

§         Recovery is an active process, in which the individual takes responsibility for the outcome, with success depending primarily on collaboration among helping friends, family, the community, and professional supports.

Text Box: Recovery allows us to define the role of the system: it is to facilitate the ability of people living with mental illness to deal actively with the limits imposed by their conditions.Recovery is about hope. As we noted earlier, recovery does not necessarily equate with cure. It can mean different things to different people.  Very broadly, it suggests that the goal of mental health policy should be to enable people to live the most satisfying, hopeful, and productive life consistent with the limitations caused by their illness. For some, recovery will equate to the reduction or complete remission of symptoms related to mental illness.

 

Text Box: A recovery-oriented system must rest upon three pillars: choice, community and integration.

In the past, much of mental health planning has not focused sufficiently on the outcomes achieved by people using the services provided within the mental health system.  Recovery provides a focus for re-orienting the design and delivery of mental health programs, services and supports. Importantly, it allows us to define the role of the system: it is to facilitate the ability of people living with mental illness to deal actively with the limits imposed by their conditions.

As Darrell Burnham, Executive Director of the Coast Mental Health Foundation, told the Committee:

The path to recovery is not clearly drawn in a map.  We see it as a very person-centred approach; that people will have their own way back into society.  The system needs to foster that and facilitate that rather than deliver a specific program that may prejudge that path.[74]

Working toward a recovery-focused system is a complex undertaking. It involves coordinated action by governments at all levels, and at each level there are multiple ministries, agencies or departments, each usually having only minimal awareness of what the others are doing. It involves tens of thousands of providers working both inside and outside the formal mental health care system, some paid within the public system and others not, as well as hundreds of thousands of unpaid caregivers, using whatever resources they can find to help their friends and loved ones, volunteering their time and energy when they can.

There is always the danger that the idea of recovery will be embraced rhetorically but not translated into policy and action.[75] In the next three sections of this chapter, a bridge is suggested between the notion of recovery and the specific proposals for reform contained in the remaining chapters of this report. In the Committee’s view, a recovery-oriented system must rest upon three pillars:

§         Choice: Access to a wide range of publicly funded services and supports that offer people living with mental illness the opportunity to choose those that will benefit them most;

§         Community: Making these services and supports available in the communities where people live, and orienting them toward supporting people living in the community;

§         Integration: Integrating all types of services and supports across the many levels of government and across both the public/private divide and the professional/non-professional dichotomy.

3.3       CHOICE

Text Box: It is people living with mental illness themselves who should be, to the maximum extent possible, the final arbiters of the services that are made available within the overall mental health system and of the ways in which they are delivered.In general, the range of choices that have been available to consumers of mental health services has been severely limited. The system has lacked both the resource capacity and the flexibility to provide personalized services that engage individuals in their own recovery, whether they are seeking treatment in an acute inpatient ward or living in their communities.

 

This is how Darrell Downton, Co-Chair of the Mental Health and Addictions Advisory Committee of the Five Hills Health Region in Saskatchewan, put it in his testimony to the Committee:

The limited options available to people with mental illness and addictions confirm to them that they are not eligible to receive the care and support they deserve.  Their recovery is limited by the options available.[76]

Text Box: Current funding arrangements mean, therefore, that many services needed by people living with mental illness and addiction are available only to those who can pay for them out of their own pockets, or who have private insurance plans that cover them.Viewed from the perspective of fostering recovery, choice is both a means to an end — a more responsive service — and also an end in itself. This is because being able to make choices is a manifestation of the rights and responsibilities of adulthood, and of full citizenship. The availability and exercise of choice is itself a potential contributor to the recovery process.

The Committee believes that it is people living with mental illness themselves who should be, to the maximum extent possible, the final arbiters of the services that are made available within the overall mental health system and of the ways in which they are delivered.  In this sense, it is legitimate to speak in terms of encouraging a consumer-driven, or consumer choice, approach.

This is the best way both to encourage the elaboration and implementation of practical solutions to the problems encountered by people living with mental illness and addiction, and to promote the mental well-being of the population as a whole.  No single body, least of all a governmental one, should be so arrogant as to believe it can prescribe a universal treatment model for all people living with mental illnesses and addictions.

Furthermore, no single treatment model should be allowed to dominate the policy horizon, either in theory or in practice.  Many people will find successful treatments or care that are derived from a purely “medical” model, while others will look to their particular community or cultural traditions for ways of achieving the best mental health possible. 

Moreover, because of the complexity of mental illnesses and their intimate connection with each individual’s unique circumstances and environment, many will find that they will need to draw on treatments, supports and ways of caring that combine elements drawn from multiple approaches.

Allowing people a range of choices that can be based in a variety of traditions is not merely the expression of a philosophical preference — it has important national policy implications.  It points to the need to address the fact that an institutionalized bias is built into the way public funding for health care services works in Canada: under the Canada Health Act, only services that are provided by physicians or in hospitals are required to be publicly funded.[77]

While other services may be funded by individual provinces or even at the community level, access to them will vary widely. Current funding arrangements mean, therefore, that many services needed by people living with mental illness and addiction are available only to those who can pay for them out of their own pockets, or who have private insurance plans that cover them.

The services provided by psychologists are one example that the Committee heard repeatedly. As one e-consultation respondent argued:

The biomedical model does not address underlying issues like abuse. I believe the origin of my illness is from childhood incest. Childhood sexual abuse has devastating consequences to a person's life. A huge percentage of people diagnosed with Borderline Personality Disorder have suffered sexual abuse. I can not afford to pay a psychologist $150 an hour to treat me. The most important thing I need is therapy.  —Anonymous

This was echoed by another respondent:

Ever since the “revolution” in drug treatment for psychiatric disorders, psychiatrists have gradually dropped their role as psychotherapists. Psychotherapy is only covered by my provincial health plan if provided by a psychiatrist (as a medical doctor). I have taken far more medication than I would have liked at an exorbitant cost to my health and to my provincial health plan, when I could have done with much less medication and had a far quicker recovery had I been able to afford psychotherapy. If the provincial plan had paid for my psychotherapy I believe that they would have saved money and my overall mental and physical health would be better as a result.
—Anonymous

Providing people living with mental illness with access to a full range of services and supports in addition to those provided by physicians and hospitals, and enabling them to select freely the ones they prefer, requires that an adequate range of services be made available and that people have available the funds to pay for them.

The Committee is aware that creating the conditions to sustain an environment that allows people living with mental illness to choose those services that benefit them most will not be easy. There will always be hard policy decisions to be made about how public resources can best be used. Moreover, no one can expect that all options will ever be freely available for everyone who desires them.

Text Box: Consumers of mental health services and supports (…) must be heard at the policy table, just as they should be allowed to make individual choices about which services and supports are right for them.On the one hand, this means that policy decisions about which services and supports should be widely available and accessible to those who would choose them must be made on the basis of the best available evidence as to their effectiveness. Given the multiple dimensions implicated in mental health issues (social, environmental, medical, biological), it is necessary to apply a methodological pluralism to the selection and evaluation of the evidence of effectiveness itself. Relevant findings derived from the medical sciences, social sciences, and from people with direct experience of mental illness must all count in weighing such evidence.

On the other hand, the need to collectively set the priorities for public spending points to another dimension of fostering choice. Consumers of mental health services and supports must be given the opportunity to participate actively in the process of collective decision-making. Their collective voice must be heard at the policy table, just as they should be allowed to make  individual choices about which services and supports are right for them.

3.4       COMMUNITY

Text Box: An orientation to providing access to community-based services and supports is the second pillar needed to support the creation of a recovery-oriented system.An orientation to providing access to community-based services and supports is the second pillar needed to support the creation of a recovery-oriented system. The evidence is clear that the shift begun many years ago away from institutionalized models of care was the right one, even if it was not always sufficiently resourced in practice.

Many witnesses stressed the importance of this community-based orientation:

In all the literature I have read about recovery, every person who discloses on this topic says that connection to the recovery community is the most important fact of ongoing recovery. Otherwise, relapse is particularly inevitable — sending the person back into a poorly functioning state.  —Patricia Commins[78]

Others pointed to the range of resources required in the community to support and sustain the recovery process. Geoff Chaulk, Executive Director of the Newfoundland and Labrador division of the Canadian Mental Health Association, told the Committee:

The community resource-based model with the person at the centre of the system also addresses the essential elements for successful community living and recovery, including adequate housing and income, work, social connections and mental health services and supports.[79]

Text Box: For people living with serious mental illness, there is strong evidence that with the proper supports in place they can not only live in the community but also lead fulfilling and productive lives.Since mental health and addiction problems cut across so many facets of community life, much more than health care and other publicly funded social services will be required to respond properly. A wide variety of forms of community action make meaningful contributions to people affected by mental illness and addiction; without them, publicly funded services would be left to struggle with an overwhelming challenge. In addition, by making the community the focus for service provision, people can stay close to their personal support networks.

But Dr. Paul Garfinkel, CEO of the Centre for Addiction and Mental Health, cautioned that:

…community care is not cheap care. Community care requires specialized resources with knowledgeable people who provide care and treatment. We have a treatment program for psychosis involving 100 people with schizophrenia.  Our team goes out to the homes in Toronto and keeps these people at home, very successfully. It is an excellent treatment program. It involves 100 people who, for sure, would have been in hospital. However, it is expensive. You need a doctor. You need a nurse. You need a social worker. You need a whole team.[80]

The significance of basing mental health services and supports in the community holds for people living with all types of mental illnesses, from the mildest to the most severe. But the mechanisms through which the needed services and supports are best delivered will vary according to the severity of people’s illnesses as well as their individual capacities to cope with the limitations imposed on them by their illnesses.

For people living with serious mental illness, there is strong evidence that with the proper supports in place they can not only live in the community but also lead fulfilling and productive lives.

A recent report by the Community Mental Health Evaluation Initiative in Ontario, for example, concluded that programs such as Intensive Case Management or Assertive Community Treatment that are designed to assist people living with serious mental illness to remain in the community were “helping clients decrease their reliance on institutional care and improve their quality of life.”[81]

The same report referred to data from a study done in Ottawa that indicate that:

…on average, it costs about $68 per day to provide community-based services to a person with mental illness. To treat the same person in hospital, however, would cost $481 per day.[82]

Of course, hospital services will always be an essential component in the continuum of care. Nonetheless, another study, from the Eastern Townships region of Quebec, showed that, by providing appropriate community-based facilities, it was possible for a region of close to 300,000 people to meet the long-term needs of people living with serious mental illness in a region that has never had a specialized psychiatric institution.[83]

An orientation towards the community will mean something different for people experiencing mild to moderate mental health problems. For most of them, contact with the mental health system will occur through a primary health care provider (group or solo), who may or may not connect them subsequently with a specialized mental health service of some kind.

Epidemiological data indicate that, each year, roughly 3% of the population will experience a serious mental illness, and that another 17% or so will experience mild to moderate illness. The full range of services must be available therefore to address the needs of both broad categories of people. Figure 1 provides a graphic representation of a system that places individuals at its centre, and of the types of treatments, supports and services that must be in place to meet the needs of all people who experience mental health problems.

The most appropriate balance among all the various elements will vary from community to community and will likely evolve as more becomes known about what types of intervention genuinely facilitate recovery among those living with the complete range of mental illnesses. However, the starting point for thinking about how to improve the mental health system should be the main types of mental health treatments, supports and services that are currently being deployed. This is what is captured in Figure 1.

3.5       INTEGRATION

The separation between services and supports that are delivered through the health care system and those that fall largely under other spheres of responsibility, as illustrated in Figure 1, points to the fact that many institutional and structural roadblocks stand in the way of realizing a “seamless” delivery of mental health supports and services.

Text Box: Many institutional and structural roadblocks stand in the way of realizing a “seamless” delivery of mental health supports and services.On the one hand, within the health sector, mental health services must be integrated with physical health care services. Ways must be found to improve the diagnosis and treatment of many illnesses at the level of primary care, as well as ways to integrate better specialist care with primary care services.Text Box: The variety of mental health treatments and services funded by ministries of health must also be integrated with the broader range of services required by people living with mental illness.

 

 

 

Text Box: Integration also requires that services and supports will be available to people throughout their lifespan.On the other hand, the variety of mental health treatments and services funded by ministries of health must also be integrated with the broader range of services required by people living with mental illness that are the responsibility of the various governmental departments and agencies that deal with income support, housing, employment, etc. Moreover, it is essential that services and supports for people living with both mental illness and addiction be better integrated.

Finally, integration also requires that services and supports will be available to people throughout their lifespan, and that as people’s needs change as a result of aging or circumstances they will still be able to gain access to appropriate services and supports in a “seamless” fashion.

Many challenges must be met to achieve the integration of services and supports that many witnesses insisted was essential to improving access to required services and building a system that encourages recovery.  First amongst these is the recognition that integration can take place in many ways, and that it is important therefore to adapt strategies to achieve integration in ways that are appropriate to each community’s particular situation.

In this regard, a report prepared by researchers at the Centre for Addiction and Mental Health, Strategies for Mental Health Integration, points out the numerous dimensions to the problem of integrating mental health services. It cites research underlining the need to distinguish among three domains — governance, administration and service delivery.

Governance refers to the part of the system with accountability for system performance and the authority to set strategic direction and policy and to oversee general management and the use of resources. Administration is the domain that supports operations on a daily basis and includes the infrastructure for finance, information, human resources, etc. Service is that part of the organization that provides services and supports directly to consumers.

The report notes that the intensity of integration can vary from loosely connected alliances to highly integrated organizations, as can the degree of formality involved (ranging from informal or verbal agreements to formal policies, rules and procedures).[84]  The evidence summarized in the report suggests that it is difficult to draw definitive conclusions regarding the ideal way to achieve integration or system-building. It does not appear that integration is best pursued as a cost-saving measure, or that all approaches to system integration yield the desired results.

Nonetheless, a number of benefits were identified that can be derived from greater integration of mental health services, noting that several studies have demonstrated the positive effects of initiatives where:[85]

§         a system manager controls a pooled funding envelope;

§         performance targets are set and monitored;

§         organization of services in the network is centralized around a core (but not necessarily consolidated) agency;

§         the system manager has control over inpatient services and monitors admissions.

Figure 1

Source: Adapted from New Brunswick Department of Health and Wellness, Community Mental Health Centres: Programs and Services, p. 3, accessed at: http://www.gnb.ca/0055/cmhcs-e.asp

Types of mental health
Treaments, supports and services

            

         Individual situated within a complex set of social determinants of health


Others have also commented on the fundamental challenges involved in changing governance structures in the broader health care sector. Mintzberg and Glouberman, for example, have noted that:

Clinical activities cannot be coordinated by managerial interventions — not by outside bosses or coordinators, not by administrative systems, not by discussions of “quality” disconnected from the delivery of it, not by all that constant reorganizing… Management of clinical operations will have to be effected by the managed, not the managers.[86]

Text Box: It is important to allow regions and communities to pursue forms of integration that are appropriate to their particular situations.In March 2000, Ontario’s Health Services Restructuring Commission (HSRC), chaired by Duncan Sinclair, published a report reflecting on its mandate and attempts to restructure the hospital system in Ontario. The HSRC made the following observations about organizational change and governance:

§         There is no one best system/ model of governance, but “there is a need to find better ways to promote greater integration, efficiencies and effectiveness across the various components of the health system.”

§         New governance models should emerge which “allow individual organizations to use their strengths and talents” while preserving and enhancing organizational distinctiveness.[87]

Finally, in a paper on “Mandated Collaboration,” Steve Lurie looked at the implications for mental health reform of the fact that “there is limited evidence that structural or organizational reform improves clinical outcomes.”[88] The general lessons he drew with regard to efforts at system integration include the following:

§         one size doesn’t fit all

§         use best practices and unified funding models to drive system change

§         there is a need to attend to corporate culture and human resource issues if attempting structural change or alliance building

§         Rome wasn’t built in a day; the development of effective collaborative relationships take time

§         there is a need to experiment, evaluate and learn from experience

It is possible to identify many potential ways of improving integration of mental health services and supports. A partial list could include:

§         expanding the use of multidisciplinary teams, shared care and collaborative care arrangements

§         developing common assessment protocols

§         pooling funding

§         putting in place registries of available services

§         linking data systems and electronic health records

§         creating mental health authorities or engaging in area planning

§         developing common service protocols and care pathways

Text Box: It is critical that integration be recognized as an essential dimension of building a recovery-oriented mental health system.The Committee believes that it is important to allow regions and communities to pursue forms of integration that are appropriate to their particular situations. Each community and region will have to choose strategies that take into account its readiness for change, and the available opportunities for improving access to services.

For example, we will later describe some of the ways that mental health services have been successfully integrated in Brandon, Manitoba. While Brandon’s experience is exemplary in many ways, it is also clear that it would be extremely difficult to replicate that experience precisely in other communities across the country. Not only has it taken 25 years of hard work by a dedicated group of people in Brandon to restructure and coordinate their community mental health services, but their success is also built upon a very particular history of deinstitutionalization that provided a context for change that does not exist in many other communities.  Nevertheless, a lot can be learned from that experience.

While the approach to integration must be based on the particular history and circumstances of each community, it is still critical that integration be recognized as an essential dimension of building a recovery-oriented mental health system. Integration in some fashion is an indispensable ingredient to provide people living with mental illness and addiction with a truly seamless delivery system that can meet their needs throughout their lifespan.

While there will never be a single template for how this is to be accomplished, the goal of recovery is one that must drive efforts to reform the mental health system. Integration must be seen as a means to achieving that goal and not as an end in itself — it must serve the objective of improving the range, affordability, quality, and accessibility of services. This requires measurement, accountability, and a commitment to change.

 

3.6       TURNING THE VISION INTO REALITY

The remainder of this report will describe the changes required if progress is to be made in creating a recovery-oriented mental health system that rests firmly on the three pillars of choice, community and integration. There are many concrete hurdles to be overcome, many of which were documented in the Committee’s background reports and eloquently recapitulated in the testimony of the witnesses and participants in the Committee’s e‑consultations who were quoted in the first two chapters of this report.

Text Box: The Committee firmly believes that despite the scale of the challenge it is possible to move forward, but only if a strategic plan is developed and a step-by-step approach is adopted toward its implementation.At times the task can seem overwhelming, in part because making progress in any one area seems to depend on making progress in them all. The Committee firmly believes that despite the scale of the challenge it is possible to move forward, but only if a strategic plan is developed and a step-by-step approach is adopted toward its implementation. We recognize that it is indeed impossible to transform the entire mental health delivery system in one fell swoop. However, pragmatic reform that enables real improvements to be made in the lives of people living with mental illness and addiction is achievable and it must happen, and soon.

The Committee is acutely aware that this report will not contain all the answers to the many challenges that confront many thousands of Canadians concerned with mental health and addiction. A parliamentary report in itself can never guarantee that action on its recommendations will follow. Moreover, the effort to implement a reform plan must extend over a considerable period of time.[89]

Nevertheless, the Committee has been encouraged in the course of its public hearings by the sense that the time may just be right to move forward in key areas. Moreover, as will become apparent, the Committee has worked very hard to ensure that the momentum for change that has been building during the three years in which we have been working on this issue can be sustained. In this regard, one of the recommendations in this report (see Chapter 16) stands out as key to the process of transforming the mental health delivery system in Canada.

The Committee believes that only if the Canadian Mental Health Commission, recommended in Chapter 16, is created immediately following the release of this report, will it be possible to maintain a national focus on mental health issues and bring together all the stakeholders who will have a role to play in transforming the system. In this sense, the new Canadian Mental Health Commission is an essential mechanism for the realization of the vision outlined in this chapter and for implementing the reform measures described and recommended in the rest of this report.

3.7       SUMMARY OF PRINCIPLES

The principles outlined in this chapter can be summarized as follows:

  1. While mental illness and physical illness are both like and unlike each other, they must be treated with equal seriousness, and people who are living with mental and physical illnesses must be accorded equal respect and consideration.
  2. The central goal of mental health policy is to create the best possible context for encouraging recovery; a focus on recovery places emphasis on wellness as opposed to illness, and sets the goal of facilitating the abilities of people living with mental illness to deal actively with the limits imposed by their conditions and to live meaningful and productive lives.
  3. Promoting mental health and recovery from mental illness requires interventions that address the social determinants of health — in particular those related to income, adequate housing and employment, and participation in social networks.
  4. A policy approach based on the idea of recovery must acknowledge that:

§         Each person’s path to recovery is unique;

§         Recovery is a process, not an end point;

§         Recovery is an active process in which the individual takes responsibility for his or her own recovery, and success depends upon collaboration among helping friends, family, the community, and professional supports.

  1. A focus on recovery will require reorienting the design and delivery of mental health programs; there are three pillars upon which a recovery-oriented system must be founded:

§         Choice: Access to a wide range of publicly funded services and supports that offer people living with mental illness the opportunity to choose those that will benefit them most;

§         Community: Making these services and supports available in the communities where people live and orienting them toward supporting people living in the community;

§         Integration: Integration of all types of services and supports across the many levels of government, and across both the public/private and the professional/non-professional divides.

  1. Policy decisions about which treatments, services and supports should receive public funding must be based on the best evidence available; this includes findings from the medical sciences, data and analyses from the social sciences, and the testimony of people with direct experience of mental illness.

APPENDIX: MODELS OF RECOVERY

1)      Psychosocial Rehabilitation Model

 

The most widely used rehabilitation model is the Psychosocial Rehabilitation Model (PSR) originated in Boston University. 

PSR is a professionally driven model that has shaped the development of many community-based programs and services.[90] It is based on the view that people with a mental illness can recover even though their illness is not cured. PSR focuses on enhancing functional ability and attempts to look at all areas of a person’s life, including strengths, resources, and barriers. The PSR approach seeks to improve four main life domains:

§         practical skills of personal self-care,

§         home management,

§         relationships and use of community resources,

§         leisure, education, and employment. 

The goal is to help people regain social functioning despite their having symptoms, limitations and taking medications.  The PSR specialist helps the individual move toward self-selected meaningful life goals and provides appropriate social and therapeutic supports to help them do so. Goal-specific skills are taught to assist individuals to achieve self-sufficiency, building on natural social and community support systems. 

Within this model, mental illness is seen as a permanent impairment similar to the way a spinal cord injury produces lasting paralysis.  It is considered that people have a “broken brain” and that, with appropriate and adequate supports, they can continue to function in society.  However, their impairment remains permanent.[91]  

The fundamental principles that underpin PSR can be stated as follows. PSR:

  1. Emphasizes the need for individually tailored interventions;
  2. Requires either that the individual’s capacities be adapted to environmental realities or that the environment be changed to suit the capacities of the individual;
  3. Builds on the individual’s strengths;
  4. Aims to restore hope;
  5. Emphasizes the individual’s vocational potential;
  6. Extends beyond work activities to encompass a full array of social and recreational activities;
  7. Actively involves individuals in their own care;
  8. Is an ongoing process that must continue over time.

     

Psychosocial rehabilitation focuses on early intervention, wellness, independence, self-determination and most importantly — hope.  Cognitive therapy, or the process of learning positive and self-enhancing self-talk, is used to help people make sense of and manage distressing symptoms of illness.  Mutual support, through peer support groups, is seen to enhance self-sufficiency and expand social networks, build each person’s self-reliance and overcome dependency on professionals.

The belief in the client’s personal capacity for growth, the development of helpful partnerships and seamless services built on individual needs and preferences are core to the psychosocial model.  Clients receive ongoing evaluation to ensure continuous progress. 

Strategies include illness education, family intervention, supported employment, assertive community treatment (ACT), skills training, and cognitive behavioural therapy. 

The practice of psychosocial rehabilitation is done by existing professionals such as psychiatrists, psychologists, social workers, occupational therapists and nurses, all with the necessary skills and training, or by persons who have received specific training in psychosocial rehabilitation in university programs. 

The “client-centred” approach utilized by PSR specialists has been criticized at times for “colonizing” the life of consumers where professionals are actively involved not only during periods of sickness but when people are healthy as well.  There have been instances where professionals have claimed ownership and responsibility not only for illness management but for social, recreational and employment roles as well. This has prompted some consumers to react by saying that “When you say ‘client-centred’, I feel surrounded.[92]   

Dr. William Anthony, the “founder” of the psychosocial rehabilitation movement, emphasizes that recovery can occur without professional intervention.  The task for professionals is to facilitate this natural process.[93]  He named the 1990s the “decade of recovery” because of the gains made in helping people adjust to community living.  However, he cautions that 2000 must be the “decade of the person.” 

In his view, rehabilitation must be done “with” clients, not “to” them.  He believes people can make meaningful choices and recognizes that lip service has been paid to the concept of self-determination. The belief that people with mental illness set unrealistic goals and cannot hold demanding jobs has resulted in professionals taking choices away from consumers “for their own good.” In his words, “If people are allowed to choose they may request something that demands we change our actions or programs.”[94]


2)         Empowerment Model

The consumer advocacy community has championed the empowerment model of Recovery as a means of promoting the idea that psychiatric patients are able to work and live independent lives and should not be defined by their “diagnosis.”  Proponents of the empowerment model argue that designating mental illness as a permanent condition is one of the factors that contribute to ostracizing people living with mental illness from society.[95] 

For consumer activists, recovery has political as well as personal implications — it is a philosophy with a set of organizing principles and values which can guide the development of supports and services as well as how they are organized and delivered.

On this understanding, to recover is to reclaim one’s life, to be validated as an autonomous, competent individual. It emphasizes that people are responsible for their own lives and affords them the privilege of choice, including the right to make mistakes. Moreover, it insists that professionals cannot manufacture the spirit of recovery.

As one e-consultation respondent told the Committee:

Systemic change will not come from professionals who experience these illnesses through an academic lens but from the lived experience of consumers and families. Ask a professional what is needed and they will always say more professional service. Ask a consumer and family member and they wish and hope for recovery. To be part of the community, a contributing and valued member of society with friends and [a] safe home. No amount of medication will help achieve those goals. Although for many medication is vitally important for clearing the path to wellness.  —Anonymous

Recovery is understood as a manifestation of personal empowerment. Within this framework, recovery happens when there is a combination of supports to (re)establish social function and sufficient self-management skills to take control of the major decisions affecting one’s life.[96]

According to the Empowerment Connection:

Recovery is the lived experience of persons as they discover, accept, and overcome the challenges of a disability, the effects of a psychiatric diagnosis or emotional or psychological trauma.  It is discovering a new sense of self, of hope and purpose within and beyond the limits of these experiences.  It is the discovery of one’s own strengths and sense of power and control within oneself and the world.  Finally, recovery occurs when a person’s psychiatric diagnosis or emotional trauma is no longer the central focus in that person’s life, but simply becomes a part of who that person is. 

It is not just mental illness and psychological trauma that people have to recover from; they also face the task of recovering from the effects of internalized stigma, learned helplessness, institutionalization, poverty, homelessness, and the wounds of spirit breaking.[97] 

Empowerment recovery is a values-based approach that puts people first and holds that the experience of illness is not permanent. This means that not only is recovery possible, it is to be expected. Recovery is seen as a continuing internal process that places the person at the centre of his or her own recovery. It is not seen as a linear process with an end point or destination. This approach to recovery also holds that individuals are “expert” in their own care. The re-establishment of social relationships is seen as vital to recovery, particularly with peers who understand viscerally the experience of mental illness.[98] 

Empowerment recovery does not suggest that professional services are unimportant or unnecessary. However, such services are not intended to “fix” the person, but rather to support him or her as the individual moves towards a healthy life.  Individuals living with mental illness are seen as the agents of change, and professionals are one of the resources to be drawn upon. In this model, psychiatric treatment is viewed as part of self-managed care. 

Adopting such an approach implies a shift away from the goal of treatment being the stabilization of illness through symptom reduction.  Instead, the goal becomes to assist people to gain greater independence and control over their own lives.  Medication is used as a tool to help people reach that goal — not as a solution to their problems. The continued use of medication does not preclude recovery. Rather it is seen as a useful adjunct to help people gain control when they are frightened or confused.

Within this recovery model, supports and services can be accessed without requiring the acceptance of the diagnostic (labelling) process.  Professionals help to foster recovery by believing in the capacity of their clients to heal and by acknowledging their right to make decisions, even at the risk of failure. Demanding compliance and conformity with professional authority is considered to interfere with learning how to become self-determining.  An essential ingredient of recovery is hope. Recovery requires that everyone be given a chance to get better, at their own pace.  The recovery approach asks people what they want and need in order to grow, and provides them with the skills and supports to achieve it.[99]

Changing the relationship between those who have been labelled “mentally ill” and those who have not can also create a common ground.  Accepting the possibility that any one of us can experience a mental illness, that, in the words of Dr. John Frank, Scientific Director of the Institute of Population and Public Health, we “are all at risk at different times in our lives,”[100] helps to remove the stigma engendered through seeing it as “them” and “us.”   

Each person’s path to recovery is unique, and what fosters recovery reflects personal experiences and preferences.  Recovery may include 12-step programs, developing close, supportive, and mutual friendships, intermittent or ongoing treatment, participation in social or vocational rehabilitation programs, becoming involved in spiritual communities, and/or consumer-/survivor-run support networks and advocacy groups. Power and responsibility must be shared by actively involving consumers and family as key players in mental health planning, organizational governance, system design, evaluation, and service delivery. 

Recovery-oriented systems recognize that concepts of recovery need to be taught and create educational opportunities such as workshops and conferences for policy makers, planners, professionals, consumers and family. Consumers are seen as recovery educators. A recovery model would ensure that a percentage of funding is allocated for consumer-run initiatives and support such as peer support, self-help, and economic development initiatives, as well as crisis and respite care programs.  It includes recognition that building the capacity for sustained and meaningful participation by consumers and family organizations requires long-term adequate funding, management training, and organizational support to be successful 


CHAPTER 4:
LEGAL ISSUES

 

Accountability means requiring the mental health system to comply with the law.  —Jennifer Chambers[101]

4.1        ACCESS TO PERSONAL HEALTH INFORMATION

4.1.1     Background

The issue of the right to privacy of persons living with mental illness and addiction, and the impact of that right on their family caregivers, has been raised repeatedly by witnesses at public hearings since the Committee began its work over two years ago.  In its earlier review of this difficult issue, the Committee noted that:Text Box: The Committee is not convinced that the issue of confidentiality represents conflict solely between persons living with mental illness and their family caregivers.  The Committee is also sceptical that existing legal protections of the right to privacy of persons living with mental illness are unworkable.

 

 

 

 

Concern arising from strict observation of privacy and confidentiality rules also extends to the family of individuals with mental illness and addiction.  Without the patient’s permission, which those with mental illness/addiction may not be competent to give, a physician cannot share personal information with his or her caregivers, parents, siblings or children.[102]

With respect to privacy and confidentiality issues, the Committee is well aware that any erosion of privacy and confidentiality protections can have serious negative consequences on an individual’s trust in his or her caregivers.  However, as noted above, witnesses have told us that rigid adherence to privacy and confidentiality rules in certain circumstances can work against the interests of individuals whose mental health is compromised.  The unique challenges they describe must be recognized when developing, interpreting and applying privacy and confidentiality rules, so as to allow health care providers and family caregivers to provide patients with the much needed support they sometimes require.[103]

Such was the Committee’s concern that in the aftermath of its first round of public hearings, in its third interim report it posed a series of questions to elicit additional comment from the public.  Specifically, it asked:

Are there mental health systems that have better, clearer procedures and consent forms for releasing information to families?  What changes are required in Canada to facilitate the sharing of information about a patient’s/client’s condition with his or her family?  Should there be greater consistency and standardization of information sharing practices in Canada with respect to patients with mental illness and addiction?[104]

In the subsequent public consultations there was extensive comment and debate on this topic and feedback was received from those living with mental illness, and their families.  Not surprisingly, no clear consensus emerged. 

To illustrate, Ron Carten, Coordinator of the Vancouver-Richmond Mental Health Network, and a person with direct experience of mental illness, stated that:

Regarding children, I do not think confidentiality should be extended to exclude parents.  Parents need to know about their children and have a right to know about their children. 

Regarding adults, I think we have to treat the mental patient, regardless of his relationship to his family, as an adult and an individual with rights and dignity, and therefore, notwithstanding the family's interests in their family member, confidentiality should stand.[105]

Joan Nazif, of the Family Advisory Committee of Vancouver Mental Health Services, presented the opposite view:

A major concern for families is to access information about their seriously mentally ill family member.  Family members are not interested in the confidential discussions between therapists and patient but they do need to know the diagnosis, care plan, medication, safety issues, so that they can continue to provide the best support.

[…]

Now, there are instances, I am sure, where families are not therapeutic for the individual. We are family members who love our family member, and we give support to our loved one 24 hours a day. I mean, I will be there for my daughter as long as I live.[106]

Having regard to all the evidence and opinion, the Committee is not convinced that the issue of confidentiality represents conflict solely between persons living with mental illness and their family caregivers.  The Committee is also sceptical that existing legal protections of the right to privacy of persons living with mental illness are unworkable.  That is not to say that reform of the laws governing privacy is unnecessary, but that it should not be considered in isolation from the more general debate about transforming the whole mental health system.

 

4.1.2     Finding a Way Forward

The Charter rights of persons living with mental illness and addiction, and in particular their right to equality, must be respected.  These affected Canadians are full members of our society. Questions concerning their mental capacity cannot be used as a pretext for watering down or stripping away any of their civil liberties or human rights. 

This having been said, the Committee is not insensitive to the circumstances of family caregivers.  Many who appeared before the Committee expressed their keen desire to assist and support their loved one in the recovery process.  Indeed, it was their forceful and articulate arguments that consistently held this issue at the forefront of our deliberations.

 

4.1.2.1  Privacy and the Age of Consent

Dealing first with the right to privacy for children and youth,  parents want and need full information about the health of their children.  The claim of access to personal health information by family caregivers is clearly strengthened when a child is involved.  Nevertheless, the Committee appreciates that, prior to achieving the age of majority, some people may be fully capable of deciding who should have access to their personal health information and to what extent. 

Given the lack of consistency across Canadian jurisdictions with respect to applicable privacy legislation, and varying capacities on the part of children and youth to consent to their own health treatment, the Committee recommends:

 

 

1

That the provinces and territories establish a uniform age at which youth are deemed capable of consenting to the collection, use and disclosure of their personal health information.

 


4.1.2.2  The Role of Health Care Professionals

Text Box: I think we have to open up that door for doctors to say, “Let me look at this.  Let me talk with your son, or your daughter, or your mother.  Let me try to help this process.”
—Brenda McPherson
Some witnesses suggested that health care professionals were not doing enough to ensure that existing legislation governing access to personal health information was applied consistently and to its fullest extent.  For example, Brenda McPherson, Provincial Coordinator, Psychiatric Patient Advocate Services, New Brunswick, testified that:

In terms of parents having information, health professionals need to be more informed about how they need to play an active role in getting consent from patients.  It is a matter of signing your name on a piece of paper and saying, “Yes, it is okay for my doctor to talk with my parents.” 

I think we tend to overdramatize the issue of consent, and we should stop doing that.  Health care professionals need to understand the importance of that.  Maybe we need to open up that door, and ask, how can we best educate our health professionals to make them understand, and make them more aware that ethically, this is not damaging to them as professionals, but it is damaging to your client if they do not? 

[…] It is twofold.  I would say, one, educate our health professionals as to the importance of getting consent… I do not think they are doing it, and they are not looking at doing it.  I think they are sticking to the, “I cannot do it and that is it.”  […]  I think we have to open up that door for doctors to say, “Let me look at this.  Let me talk with your son, or your daughter, or your mother.  Let me try to help this process.”  Have doctors say this rather than, “No, I cannot because I am bound by ethics.”[107]

Her words were echoed by France Daigle, Suicide Prevention Program, New Brunswick Ministry of Health, who stated that:Text Box: The Committee believes that in circumstances where there is clear, serious and imminent danger, health care professionals may have an overriding duty in law to warn third parties and thereby protect the safety of the patient.  It does not agree, however, that the role of health care professionals is to act as quasi-judicial arbiters.

…the first thing people say is, “I cannot tell you anything because of confidentiality.”  However, when you have someone that is at risk for suicide, and as much as I do respect confidentiality, because we have a code of ethics, what is more important?  You have to let the family and other people know. 

I found that sometimes as caregiver, family members, or professionals, we hide behind this confidentiality.  We have to start working together.[108]

The Committee believes that health professionals have an important role to play in improving the flow of information between persons living with mental illness, and their families.  Therefore, it recommends:

 

 

2

That health care professionals take an active role in promoting communication between persons living with mental illness and their families.  This includes asking persons living with mental illness if they wish to share personal health information with their families, providing them with copies of the necessary consent forms, and assisting them in filling them out.

 

Joan Nazif suggested that the role of health care professionals be expanded still further.  She noted that:

Like many other provinces, we have the Freedom of Information and Protection of Privacy Act, FOIPPA, but unlike some other provinces, we are fortunate to have guidelines for FOIPPA.  The guidelines, written by our provincial government Ministry of Health, state that a health provider may decide to share information with family or another third party.[109]

The Committee believes that in circumstances where there is clear, serious and imminent danger, health care professionals may have an overriding duty in law to warn third parties and thereby protect the safety of the patient.  It does not agree, however, that the role of health care professionals is to act as quasi-judicial arbiters between persons living with mental illness and their families, or to take the role of privacy commissioners or judges in interpreting legislation governing the right of privacy.  Therefore, it recommends:

 

 

3

That health care professionals have discretion to release personal health information, without consent, in circumstances of clear, serious and imminent danger for the purposes of warning third parties and protecting the safety of the patient.

That this discretion be governed by a clearly defined legal standard set out in legislation, and subject to review by privacy commissioners and the courts.

 

 

4.1.2.3  Substitute Decision Makers and Advance Directives

The Committee was concerned that many families seemed unaware of the fact that provincial laws often anticipate incapacity on the part of persons living with mental illness and contain specific provisions to facilitate the flow of personal health information to them.  For example, under Ontario law a mentally capable person may appoint a substitute decision maker and grant him or her the right to access some or all of his/her personal health information. Persons with direct experience of mental illness, like Ron Carten, raised this as an alternative to weakening privacy protections:

Text Box: Making advance directives and appointing substitute decision makers would ensure family access to personal health information while also preser¬ving the autonomy and dignity of persons living with mental illness.

Well, you are questioning whether or not the person who is diagnosed with the mental illness can make a decision.  There are such things as advance directives.  The Representation Agreement Act of British Columbia provides for those, but explicitly excludes people with mental illness.  If that right were granted to people with mental illness, they could appoint someone ahead of time to make decisions for them when they are not capable of doing so.[110]

Making advance directives and appointing substitute decision makers is a relatively simple process. If it were to be widely employed, it would ensure family access to personal health information while also preserving the autonomy and dignity of persons living with mental illness.  For this reason the Committee recommends:

 

 

4

That all provinces and territories empower mentally capable persons, through legislation, to appoint substitute decision makers and to give advance directives regarding access to their personal health information.

That provisions in any provincial legislation that have the effect of barring persons from giving advance directives regarding mental health treatment decisions be repealed.

That all provinces and territories make available forms and information kits explaining how to appoint substitute decision makers and make advance directives.

That all provinces and territories make available community-based legal services to assist individuals in appointing substitute decision makers and making advance directives.

 

 

That all provinces and territories undertake public education campaigns to educate persons with mental illness, and their families, about the right to appoint a substitute decision maker and make an advance directive.

 

4.1.2.4  Filling the Gap

Text Box: The best we can hope for is to offer Canadians and their families the opportunity to plan for their being incapacitated in the future and, should they fail to do so, offer them a second window of opportunity.The Committee is aware that pre-planning will not occur in every case.  Individuals may not anticipate becoming ill and therefore may not name a substitute decision maker or make an advance directive.  After all, it is not uncommon for people, particularly young people, to die without having given any thought to estate planning, let alone preparing a valid will. 

In cases such as these, it is important that some legal mechanism be put in place to fill the gap.  It is reasonable to assume that individuals affected by a mental illness would want and expect their spouses, children, parents or other family members to care for them in the same way they would in the case of an unanticipated physical illness.  It is also reasonable to expect that those family caregivers would require access to some of the relevant personal health information in order to better care for their sick loved one.  Therefore, the Committee recommends:

 

 

5

That where a person is diagnosed with a mental illness that results in his/her being found mentally incapable, and where there is no previous history of mental illness or finding of mental incapacity, and where there is no named substitute decision maker or advance directive, the law create a presumption in favour of disclosure of personal health information to the affected person’s family caregiver(s).

That the provinces and territories enact uniform legislation setting out this presumption.

That the legislation specify an “order of precedence” for relatives (i.e., if the person is married, or living in a common-law relationship, disclosure would be to his or her spouse or common-law partner, and if there is no spouse or common-law partner, to the person’s children, etc.).

 

 

That the legislation specify the information to be disclosed, including: diagnosis, prognosis, care plan (including treatment options, treatment prescribed, and management of side-effects), level of compliance with the treatment regime, and safety issues (e.g., risk of suicide).

That the legislation specifically bar the release of counselling records.

That the legislation oblige the person disclosing the personal health information to notify the mentally incapable person, in writing, of the information disclosed, and to whom it was disclosed.

 

The Committee realizes that this is not an ideal solution and that families caring for someone affected by a mental illness are unlikely to be fully satisfied.  However, it is not our role to compel persons living with mental illness to make any particular decision. 

The best we can hope for is to offer Canadians and their families the opportunity to plan for their being incapacitated in the future and, should they fail to do so, offer them a second window of opportunity.  If, however, having regained his or her mental capacity someone elects to preclude his or her loved ones from sharing relevant personal health information from that point on, the Committee respects that the choice is that individual’s to make.

4.2       CHARTER OF PATIENTS’ RIGHTS

4.2.1     Background

Text Box: The Committee acknowledges the support shown for a patients’ charter in its second on-line consultation.The Committee has struggled long and hard with the issue of how to ensure that health care patients receive the care and support they need.  In its earlier report entitled The Health of Canadians — The Federal Role, the Committee put forward the idea of adopting a charter of patients’ rights “as the means of enforcing maximum waiting time standards.”[111]  Although this option was eventually rejected in favour of other less legalistic approaches, the idea did not perish.

During the public hearings that preceded publication of the Committee’s background reports on mental health, mental illness and addiction, a number of witnesses raised in this new context the option of a patients’ charter.  The Committee also took note of the robust vision articulated by the Champlain District Mental Health Implementation Task Force in Ontario. It argued for a charter that:

…would not be limited to mental health services but would also encompass broader social supports.  More precisely, the proposed charter included, for example:

·         Mental health services that are safe, secure, evidence-based, timely, culturally appropriate and relevant to the individual’s needs;

·         Services and supports that encourage the involvement of individuals with mental illness and addiction and are based on the principles of recovery, self-help and independent living and functioning;

·         Treatment that is respectful of relevant legislation (Mental Health Act, Canadian Charter of Rights and Freedoms, etc.);

·         Respect for privacy and informed choices.[112]

 

4.2.2    Stakeholder Consultations

Text Box: The Committee is uncomfortable with the idea of a separate legal regime for persons living with mental illness.  Given the level of interest in a patients’ mental health charter, the Committee opted to canvass the issue more broadly.  In the Committee’s second on-line consultation,  Canadians were asked whether they favoured a legislated “Charter of Consumers’ Rights,” and  for their views on what it should include.

There was support for adopting a legislated patients’ charter, although it was somewhat less popular with family members and service providers than with those living with mental illness.[113]  Also, there was support for the inclusion of particular items, such as the right to:

  1. mental health/addiction services that are at least of the same quality as other health-related services provided to all Canadians,
  2. timely access to mental health/addiction services,
  3. mental health/addiction services in [a person’s] language of choice and reflecting [their] cultural background,
  4. a suitable range of medical and non-medical mental health/addiction services, and,
  5. protection from the public expression of views that stigmatize or belittle persons living with mental disorders and/or addiction.[114]

Although the results of the second on-line consultation were favourable, the proposed patients’ charter was not without its critics.  For example, two anonymous participants in wrote:

Just what we need ... another Charter ... a piece of paper will really help! NOT! Rather than making the lawyers richer and niche activist groups who pursue lawsuits for their own enjoyment more popular, perhaps the government should consider funding these services properly. Now that would be a novel idea!  —Anonymous

The Federal Government would do well to ensure the current Charter of Rights and Freedoms is enforced rather than developing a second Charter for specific populations.  —Anonymous

4.2.3    Roadblocks

While the Committee acknowledges the support shown for a patients’ charter in its second on-line consultation, it is mindful of roadblocks to the implementation of such a document.  They fall into two general categories.

 

4.2.3.1  Philosophical Roadblocks

Text Box: The Committee is concerned that a patients’ charter may have the unintended consequence of diluting, rather then augmenting, existing enforcement mechanisms.The Committee is uncomfortable with the idea of a separate legal regime for persons living with mental illness.  In our view, entrenching rights for a particular segment of the population in a distinct legal instrument places the named group at risk of further alienation and stigmatization.  This is particularly true if the proposed patients’ charter links obligations or “responsibilities” with the rights it seeks to protect.

The Charter of Adult and Family Rights and Responsibilities[115] serves to illustrate the point.  This Charter devotes an entire section to the “responsibility” of maintaining good personal hygiene.  It reads as follows:

8.  Hygiene

 

§         Pay particular attention to your own hygiene.  Poor hygiene is offensive to others

§         Bathe, brush you [sic] teeth, and wash your hair regularly

§         If this is difficult for you ask for assistance.  Perhaps you could make this one of your goals.[116]

While the Committee does not wish to be overly critical of the efforts of a dedicated group of concerned citizens, it questions the utility of a patients’ charter that would link the violation of constitutional rights, such as freedom from arbitrary detention, with the failure to act “responsibly” (e.g., defined as failure to wash one’s hair).

The Committee is similarly concerned that a patients’ charter may have the unintended consequence of diluting, rather then augmenting, existing enforcement mechanisms.  Including a legal right within a patients’ charter may result in complaints being diverted to other bodies for decision, away from quasi-judicial or judicial enforcement mechanisms in which uniform legal standards apply. 

Text Box: Our preferred course of action would be to facilitate access to personal health information in accordance with the procedures and standards set out in existing privacy laws.  The suggestion that persons living with mental illness rely on alternative complaint mecha¬nisms makes us uneasy.The Bill of Client Rights,[117] of the Centre for Addiction and Mental Health (CAMH) in Toronto, is used here for illustrative purposes.  This document, which is to be distinguished from The Charter of Adult and Family Rights and Responsibilities, is a comprehensive rights-based instrument which in our view has the potential to fulfill its intended mandate to promote “…the dignity and worth of all of the people who use the services of the Centre for Addiction and Mental Health.”[118]  The difficulty, however, is that it strays into the realm of pre-existing legal rights. 

Section 6(4) of the Bill of Client Rights provides that “every client has the right to view her/his clinical records without undue difficulty.”[119]  It is not clear why this provision is included because in Ontario the Personal Health Information Protection Act establishes: 

…a formal process for individuals to access and correct their own personal health information, within specified time frames and the right to complain if an access or correction request is denied.[120]

Complaints are adjudicated by the Information and Privacy Commission of Ontario, which has broad powers to enforce the Act.  Also, the Act provides for fines of up to $250,000 for organizations that commit offences set out in it. The unnecessary duplication puzzles the Committee.

The Committee believes strongly that all Canadians should be afforded equal protection and equal benefit under the law.  This includes having their rights spelled out and enforced in a uniform way.  Therefore, our preferred course of action would be to facilitate access to personal health information in accordance with the procedures and standards set out in existing privacy laws.  This is why the suggestion that persons living with mental illness rely on alternative complaint mechanisms makes us uneasy.

The Committee appreciates that the Bill of Client Rights does not preclude CAMH clients from availing themselves of the enforcement mechanisms set out in the Personal Health Information Protection Act.  However, we are concerned that those who opt to go this latter route will be viewed as “difficult” or “litigious.”   Also, we question whether internal complaint mechanisms, particularly in the absence of third-party adjudication and clearly defined sanctions, will yield equivalent results for complainants.

 

4.2.3.2 Practical Roadblocks

A number of options for implementing a Charter of Patients’ Rights for mental health services have been suggested.  These include creating a Canada Mental Health Act; amending the Canadian Human Rights Act; and creating a separate piece of rights legislation to be enacted by Parliament and the provincial and territorial legislatures.

 

4.2.3.3 Canada Mental Health Act

One possibility would be to establish a federal Mental Health Act setting out the rights of persons living with mental illness with respect to mental health services.  However, there are a number of significant difficulties associated with such a proposal.

The primary barrier relates to the division of powers in the Canadian constitution.  With some exceptions, provinces generally have jurisdiction over health, including over hospitals,  the direct delivery of most medical services, the education of physicians, and other related functions.[121]  Mental health services are primarily under provincial jurisdiction.

Under the Canada Health Transfer (CHT), the federal spending power is used to influence the Canadian medicare system.[122]  The same power is also used to set national standards through the Canada Health Act, the purpose of which is “to establish criteria and conditions in respect of insured health services and extended health care services provided under provincial law that must be met before a full cash contribution can be made.”[123]  The Canada Health Act allows the amount of money to be transferred under the CHT to be reduced in two ways:  one, if a province allows extra-billing[124] or user charges[125] and two, if the health insurance plan does not satisfy the criteria of public administration, comprehensiveness, universality, and portability. 

At the same time, it is important to note that the Canada Health Act does not cover services provided in a hospital or institution primarily for people with mental illness.  This was pointed out by Dr. Sunil Patel, then president of the Canadian Medical Association, when he appeared before the Committee.  He suggested that the Canada Health Act be amended to include such psychiatric services.[126] 

The Committee believes, however, that such an amendment would be largely symbolic for two reasons: first, most stand-alone psychiatric institutions have been closed in favour of providing mental health services in the same hospitals in which physical health services are provided; and second, many services essential to persons living with mental illness (i.e., psychological services or drug therapies) have no or limited coverage under existing provincial health plans.  Hence, the Committee does not favour such an amendment to the Canada Health Act.

It might nonetheless be possible to develop a Canada Mental Health Act along the lines of the Canada Health Act, that is, to tie federal transfers to provincial/territorial compliance with certain principles that guide the provision of mental health services.  However, it is difficult to envision how such a law would be enforced, notably because transfers to the provinces are not divided into separate “physical health” and “mental health” categories.

As well, a number of criticisms have been raised with respect to the Canada Health Act that illustrate some of the problems that would likely apply to a Canada Mental Health Act.  In 2002, the Auditor General pointed out that Health Canada still did not have adequate information to assess the extent of provincial and territorial compliance with the Canada Health Act criteria and conditions.[127]  The Auditor General was also troubled by the length of time it was taking to resolve compliance issues:

Health Canada has tended to take a non-intrusive approach to administering the Act.  However, this approach has not brought about the speedy resolution of issues related to non-compliance with and interpretation of the Act.  The majority of the non‑compliance issues identified by Health Canada over the past 10 years have remained unresolved for five years or longer.[128]

Text Box: The potential barriers and concerns outlined suggest that a Canada Health Act model would make it a less-than-ideal vehicle for a Charter of Patients’ Rights.Furthermore, it is important to recognize that the penalties that have actually been enforced under the Canada Health Act relate to user fees and extra-billing; the deduction for non-compliance with the criteria or conditions of the Act has never been used.  Given that matters relating to mental health care services would likely fall under the same broad criteria of “comprehensiveness” and “universality” that apply under the Canada Health Act, past practice suggests that if a model similar to the Canada Health Act were created, effective enforcement would probably not take place.

The potential barriers and concerns outlined above suggest that a Canada Health Act model would make it a less-than-ideal vehicle for a Charter of Patients’ Rights.

 

4.2.3.4 Amending the Canadian Human Rights Act

Another option to implement a Charter of Patients’ Rights would be to amend the Canadian Human Rights Act.  As described in section 2 of the Canadian Human Rights Act, its purpose is to:

Text Box: The Canadian Human Rights Act applies only to areas of federal jurisdiction. Therefore it would not be a useful instrument through which to require amendment of provincial mental health legislation or improve services to persons living with mental illness.  extend the laws in Canada to give effect, within the purview of matters coming within the legislative authority of Parliament, to the principle that all individuals should have an opportunity equal with other individuals to make for themselves the lives that they are able and wish to have and to have their needs accommodated, consistent with their duties and obligations as members of society, without being hindered in or prevented from doing so by discriminatory practices based on race, national or ethnic origin, colour, religion, age, sex, sexual orientation, marital status, family status, disability or conviction for an offence for which a pardon has been granted.[129]

Some of the activities prohibited by the Act include:

§         denying access to goods, services, facilities, or accommodations on a prohibited ground of discrimination (s. 5);

§         refusing to employ or refusing to continue to employ an individual on a prohibited ground of discrimination (s. 7);

§         publishing or displaying a notice or sign that expresses or implies discrimination or incites others to discriminate (s. 12); and

§         telecommunicating hate messages (s. 13).

The Canadian Human Rights Act applies only to areas of federal jurisdiction. Therefore it would not be a useful instrument through which to require amendment of provincial mental health legislation or improve services to persons living with mental illness.  The Act applies, however, to the provision of health services to First Nations and Inuit, veterans and federal offenders — populations that have certain health services provided to them by the federal government.

Other than requiring that federally regulated service providers avoid discrimination in the provision of services, there is nothing in the Human Rights Act that outlines how specific services are to be provided.  It may be possible to amend the Act to include specific references to the provision of services.  However, such an amendment would have limited application, given that it would apply only to specific populations and in specified circumstances.

 

4.2.3.5    Creating a Separate Piece of Legislation to be Enacted by Parliament and the Provincial and Territorial Legislatures

Text Box: Developing model uniform legislation that could be adopted by the provinces and territories would appear to be the option with the greatest chance of leading to the creation of a charter of rights for people living with mental illness.  However, given the Commit¬tee’s objections to a separate legal regime for mental health, this is not a course of action it is prepared to recommend.Given the provincial jurisdiction over health (with the exception of legislation that sets out rights to mental health and other services for populations over which the federal government has responsibility), any legislation enacted by Parliament would likely be limited to making financial transfers to the provinces contingent on their meeting certain criteria, in a similar fashion to the way that the Canada Health Act operates.

The federal government could, however, invite the provinces and territories to participate in a process to review existing mental health legislation.  The goal of the review process would be to develop framework legislation that sets out specific rights to mental health services that could be adopted by the provinces and territories and by the federal government with respect to the populations under its jurisdiction. Such a federal/provincial/territorial review of legislation could take place as part of the Annual Conference of the Federal/Provincial/Territorial Ministers of Health. 

Alternatively, it may also be possible to recommend that the Uniform Law Conference of Canada develop model legislation that would set out uniform consumers’ rights to mental health services.  In 1987, this Conference endorsed a Uniform Mental Health Act developed to ensure that provincial legislation did not violate the Charter of Rights and Freedoms.

The Uniform Law Conference has a criminal law group and a civil law group, and was founded to harmonize the laws of provinces.  Government policy lawyers and analysts, private lawyers and law reformers gather on a regular basis to consider areas of provincial and territorial law that would benefit from harmonization.[130]  Once an area has been studied and draft legislation has been developed, the civil law group adopts the draft legislation and recommends that it be enacted by all relevant governments in Canada.[131]

As mentioned above, it is virtually certain that any attempt by Parliament to establish legislation setting out the rights of persons living with mental illness to mental health services would be rejected by the provinces and territories.  The option of making transfer payments contingent on meeting criteria for mental health services is problematic, as described earlier for the Canada Health Act.  Developing model uniform legislation that could be adopted by the provinces and territories would appear to be the option with the greatest chance of leading to the creation of a charter of rights for people living with mental illness.  However, given the Committee’s objections to a separate legal regime for mental health, this is not a course of action it is prepared to recommend.

4.3       THE MENTAL DISORDER PROVISIONS OF THE CRIMINAL CODE

4.3.1     Background

Part XX.1 of the Criminal Code sets out a comprehensive and independent regime governing accused persons who are found either unfit to stand trial or not criminally responsible for an offence on account of mental disorder.  Although it was not our intention, the Committee has found itself drawn into the recent debate surrounding this regime.  Given its very recent review and amendment by Parliament, our comments will be limited to those issues that were not resolved by the passage of Bill C‑10.[132]

 

4.3.2    Power of Review Boards to Order Assessments

Review Boards have two primary functions.  First, when an accused person has been found by a court to be unfit to stand trial:

…the disposition may initially only be a conditional discharge or hospital detention, not an absolute discharge.  At each hearing to review the disposition, the Review Board is to determine whether the accused has become fit to stand trial and if so, send him or her back to court.  If the court concludes that the accused is indeed fit, a trial may proceed.  If the accused is found to remain unfit, he or she will remain subject to further Review Board hearings.[133]

Text Box: Information needed by Board members to make appropriate dispositions is not always available.Review Boards may also recommend that a court hold an inquiry where a person poses no significant threat to the public and is unlikely ever to become fit to stand trial.  Such an inquiry may result in a stay of proceedings.

Second, if a court finds an accused person not criminally responsible on account of mental disorder:

…it may choose one of three dispositions:  an absolute discharge, a conditional discharge…or detention in hospital….  Alternatively, and very frequently, the court refers the decision to the Review Board of the appropriate province or territory.  Any disposition other than an absolute discharge must be reviewed annually by the Review Board until it determines that the accused is not a significant threat to the safety of the public and discharges him or her absolutely.[134]

In all cases, the law requires that Review Boards impose the least restrictive disposition necessary.  However, the Committee was alerted to the fact that information needed by Board members to make appropriate dispositions is not always available.  Judge Schneider, Alternate Chair of the Ontario Review Board and the Nunavut Review Board, testified that:

Text Box: (…) the fact that somebody had been seen and an opinion offered with respect to fitness over the last 12 months is really next to irrelevant because fitness is something that fluctuates as a function of the individual's clinical condition; it can change day-to-day, hour-to-hour. So, to limit the board's ability to order assessments in the way that it has been done in C-10 I think is unnecessarily restrictive.
—Judge Schneider
…the courts rarely, upon a verdict of either unfit to stand trial or not criminally responsible, make an initial disposition and leave it to the review boards. To leave the review board in a position where it does not have, in the spirit of Winko, the full ability to order assessments is really inconsistent with the reasoning of the Supreme Court.

Just to put this into perspective, it was obviously written by someone who did not understand how the system worked. There is often a report available that has been produced within the last 12 months. The question is whether it is directed to the issues that we have to decide as a review board. 

[…]The reports that would have been prepared and attached to the information or indictment would have gone to the issue of fitness to stand trial or criminal responsibility. They would not have gone to the issue of least onerous, least restrictive disposition, which is what the board has to decide.[135]

Text Box: The Committee is persuaded by the arguments for the need to increase the powers of Review Boards.Following the adoption of Bill C-10, Review Boards may now order assessments where no assessment report is available or no assessment has been conducted in the last 12 months.[136]  However, as Judge Schneider noted:

Particularly with respect to the unfits, the fact that somebody had been seen and an opinion offered with respect to fitness over the last 12 months is really next to irrelevant because fitness is something that fluctuates as a function of the individual's clinical condition; it can change day-to-day, hour-to-hour. So, to limit the board's ability to order assessments in the way that it has been done in C-10 I think is unnecessarily restrictive.

I would have simply altered the wording in 672.11 and put in beside “court,” “or review board”. It would have been the simplest way around it.[137]

Courts have authority to order assessments at any stage of the proceedings against the accused.  The Committee is persuaded by the arguments for the need to increase the powers of Review Boards, and therefore recommends:

 

 

6

That the Criminal Code be amended to grant Review Boards the same powers to order mental health assessments as those it currently confers on courts.

 

4.3.3    Power of Review Boards to Order Treatment

Text Box: Review Boards have no authority to order a mentally disordered accused to undergo treatment.  Courts, on the other hand, are empowered to do so by the Criminal Code in very limited circumstances.Review Boards have no authority to order a mentally disordered accused to undergo treatment.  Courts, on the other hand, are empowered to do so by the Criminal Code in very limited circumstances.  In his testimony before the Committee, Judge Schneider argued that:

The biggest one that was missed in C-10 though, quite apart from the ability to make assessment orders, was the ability of the board to treat accused who come through the system as unfit. Now, we do this quite aggressively in the Mental Health Court because we have got practitioners who are very familiar with the legislation and comfortable in applying it, but if you go outside of this little area here, you will find that treatment orders are generally not made by the court, which means that the accused goes to the provincial or territorial review board as unfit and stays within the jurisdiction of the provincial or territorial review board until they are fit.

When the board does not have the ability to order treatment, the same way that the court would have under 672.58, that means that the province or territory where the accused is housed has to rely on whatever the local civil legislation is in order to get them treated. This means that you are going to have somebody unfit staying in the system three, four, five times as long as they would have had the board had just been able to order that they be treated for a period of up to 60 days the same way the courts can under .58.

If the board — which you will remember is made up of a panel of experts — had the same powers as the courts under .58, you would see the unfit people staying in the system for much shorter periods of time. We strongly advocated for that and it just did not receive a mention.[138]

Text Box: The Committee heard from many people living with mental illness who strongly oppose forced psychiatric intervention.The issue of involuntary treatment is highly contentious.  The Committee heard from many people living with mental illness who strongly oppose forced psychiatric intervention.  Their message was unequivocal — imposed treatment is highly damaging to the autonomy and dignity of affected persons:

In addition to criminal abuse, there is a more consistent abuse of rights of people in the mental health system. It is a constant violation of our right to certain protections under the law.

One example is informed consent. Study after study show that few users are informed about the undesirable effects of the psychoactive medications that are prescribed for them. Least restrictive treatment is frequently violated. The right to refuse treatment has really become often an exercise in evaluating the competency of someone in the mental health system when they dare to refuse the offered treatment.  —Jennifer Chambers[139]


If psychiatric treatments were effective and relieved suffering, we would not have the crisis that we have in our health care system.  People would love their meds.  Forced psychiatry exists because many people often do not feel better, or even loathe the drugs and their damaging side effects.

[…]Just once, treat a patient against her will and if you do not alleviate suffering, you have lost that person's trust and intensified her fears forever.  This is a vital issue for virtually all patients and ex-patients I have ever interviewed.  Many are terrified of the mental health system.  —Rob Wipond[140]


The option of electroconvulsive therapy in exchange for an early release forced me to sign the consent form; this is not consent, it is coercion. Many things are “voluntary,” but many things that we consent to are not voluntary. It is just like if you put a gun to my head and make me sign over my property to you, that does not equate to consent and that is virtually what the doctors do to the patients. 

[…]

I have been phoned by a psychiatrist at my home and been told that I would do what he said, which was to add another pill to my drug cocktail, which at that time was up to four different medications in substantial doses. He told me that if I did not comply he would “send the police to drag me to the hospital in handcuffs.” Those were his words. I was perfectly well at that time.
—Francesca Allan[141]


I would like to share with you at this point the following quote from the director of the World Health Organization who officially declared a global emergency in human rights and mental health, including this very revealing statement: “A human rights violation is not just a matter of denied access to treatment but also and often consists in treatment itself...”  This is something for you to reflect upon.  My point in all of this is that we are too prone, we are too much in a rush with the most expensive solutions instead of listening to what people really need.  It should not be rocket science, but we make it for some reason.  —Eugene LeBlanc[142]


…you cannot believe how horrified I was — I read the presentation of the Schizophrenia Society that suggested you actually recommend removing the right of forensic patients to refuse treatment under the Criminal Code.  —Randy Pritchard[143]

In light of these and other submissions, the Committee has reservations about involuntary treatment although it may be required in very rare circumstances.  We recognize that forcing individuals to submit to psychiatric intervention in the absence of their, or their substitute decision makers’, consent has real and profound consequences for their autonomy and dignity.  Moreover, doing so may violate their Charter rights.

Having said that, the powers granted to courts by the Criminal Code permit involuntary treatment in very limited circumstances.  Treatment dispositions may be made on application by the prosecutor for the sole purpose of making a mentally disordered accused fit to stand trial.  Medical evidence must be presented, the disposition is limited to 60 days, and neither psychosurgery nor electroconvulsive therapy may be administered.  Further, the accused is entitled to challenge the treatment disposition.

Text Box: We recognize, however, that the need to shorten the period of time that individuals found unfit to stand trial stay in the system is pressing and substantial.We acknowledge the objections to forced psychiatric intervention made to us by persons living with mental illness, and we respect them.   We also recognize, however, that the need to shorten the period of time that individuals found unfit to stand trial stay in the system is pressing and substantial.  The following decision was not taken easily or lightly.  However, the singular purpose of the treatment disposition, coupled with the short time limit, the prohibition of certain highly invasive therapies, and the existing procedural safeguards, give the Committee substantial comfort.  Therefore, we recommend:

 

 

7

That the Criminal Code be amended to grant Review Boards the same powers to order treatment as those it currently confers on courts.

 

 

4.3.4    Fitness to be Sentenced

Text Box: Currently, there is a gap in the law pertaining to the issue of fitness to stand trial.  This gap arises when a person becomes unfit after a verdict has been reached.  Currently, there is a gap in the law pertaining to the issue of fitness to stand trial.  This gap arises when a person becomes unfit after a verdict has been reached.  In other words, the person is not “unfit to stand trial,” but is instead “unfit to be sentenced.”  Judge Schneider explained it as follows:

The other major flaw, and I do not think it was addressed in Bill C-10, was altering the definition of “unfit to stand trial” to include the window up to and including the end of sentencing. I think it remains untouched as going to the end of the verdict, which leaves a legal lacuna if the accused happens to post-verdict get unfit prior to being sentenced.

There is a decision by the name of Balliram from Ontario Superior Court, a decision of Justice McWatt, who actually reads in an expanded interpretation of section 2 dealing with “unfit to stand trial”. We were hoping that Parliament would pick up on that in C-10 but they did not.[144]

These concerns were echoed by Judge Carruthers, Chair of the Ontario Review Board, who testified that:

From a practical point of view, many times a person has decompensated after verdict, pending, say, a dangerous offender application. You are in irons because the person is not qualified or capable of being sentenced, but he has been convicted, and it is crazy to not extend the definition as [Judge Schneider] says from “verdict” to include “sentence,” and then the whole thing is covered.[145]

Text Box: The Committee is concerned that the Criminal Code does not currently provide a way to deal with convicted persons who become unfit to be sentenced after a verdict has been reached.  While this issue was not addressed by Bill C-10, it was raised and commented on by the Honourable Irwin Cotler, Minister of Justice and Attorney General of Canada, appearing before the Standing Senate Committee on Legal and Constitutional Affairs to address the proposed legislation.  He stated that:

On the issue of fitness to be sentenced, because reference was made to that, Bill C-10 does not include amendments to provide for a verdict of “unfit to be sentenced” or to provide for assessments at the time of sentencing. This is an important issue on which we felt further research and consultation is needed. Therefore, I share this with your committee as well.

The specific amendments that may be needed here relate as much to the principles of sentencing as they do to the law of governing those with a mental disorder. The Department of Justice has commissioned academic research on this issue that suggests that unfitness at the time of sentence requires a different conceptualization or test for fitness and different consequences from those that would follow from a finding of unfit to stand trial.

While I agree that this issue must be addressed, we have not included specific amendments in Bill C-10 in relation to it. Amendments may be considered for inclusion in a forthcoming criminal law amendment bill following further consideration and consultation with provincial and territorial ministers responsible for justice, to which this has been referred.[146]

The Committee is concerned that the Criminal Code does not currently provide a way to deal with convicted persons who become unfit to be sentenced after a verdict has been reached.  However, given the complexity of the issue and the fact that the Government of Canada is currently taking steps to address it, we believe that putting forward a specific proposal at this time would be premature.  Instead, we recommend:

 

 

8

That the Government of Canada, in consultation with provincial and territorial ministers responsible for justice, develop proposed amendments to the Criminal Code to address the issue of convicted persons who become unfit to be sentenced after a verdict has been reached.

That these amendments be brought before Parliament within one year of the tabling of this report in the Senate.



[3]  14 June 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/22eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[4]  As documented in the Committee’s interim reports (November 2004), the extensive fragmentation of the delivery of mental health supports and services in Canada precludes speaking in any meaningful sense of a coherent and integrated mental health system. Throughout this report the term system is used simply to indicate that there is a multiplicity of types of services and supports, both formal and informal, available to people living with mental illness and addiction, no matter how insufficient they may be.

[5]  14 June 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/22eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[6]  15 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/05evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[7]  7 June 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/19evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[8]  15 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/05eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[9]  6 June 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/18eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[10] 9 May 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/15eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[11] 17 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/07ev-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[12] 15 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/05eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[13] 17 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/07ev-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[14] 14 June 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/22eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[15] 16 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/06evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[16] 9 May 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/15eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[17] 14 June 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/22eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[18] 9 May 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/15evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[19] 9 May 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/15eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[20] 15 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/05evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[21] 15 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/05evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[22] 9 May 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/15eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[23] 16 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/06evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[24] 15 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/05eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[25] 16 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/06evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[26] 6 June 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/18eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[27] 6 June 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/18eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[28] 15 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/05eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[29] 15 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/05evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[30] 15 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/05evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[31] 31 May 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/16eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[32] 2 June 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/17eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[33] 9 May 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/15eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[34] 9 May 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/15eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[35] 1 June 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/16evc-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[36] 6 June 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/18eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[37] 6 June 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/18eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[38] 15 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/05eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[39] 31 May 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/16eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[40] 1 June 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/16evc-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[41] 15 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/05eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[42] 9 May 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/15eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[43] 9 May 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/15eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[44] 5 July 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/25ev-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[45] 16 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/06evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[46] 15 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/05evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[47] 9 May 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/15eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[48] 15 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/05eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[49] 6 June 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/18eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[50] 16 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/06evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[51] 15 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/05eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[52] 9 May 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/15evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[53] 15 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/05eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[54] 31 May 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/16eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[55] 16 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/06evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[56] Anonymous participant, second e-consultation.

[57] Skinner, W., O’Grady, C., Bartha, C., and Parker, C. (2004) Concurrent substance use and mental health disorders: An information guide. Toronto: Centre for Addiction and Mental Health.

[58] 15 June 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/22evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[59] Statistics Canada (2003) Canadian Community Health Survey, Cycle1.2, Mental health and Well-Being.

[60] See Standing Senate Committee on Social Affairs, Science and Technology. (November 2004) Report 1— Mental Health, Mental Illness and Addiction: Overview of Policies and Programs in Canada, Ch. 3.

[61] Standing Senate Committee on Social Affairs, Science and Technology. (November 2004) Report 1— Mental Health, Mental Illness and Addiction: Overview of Policies and Programs in Canada,, Ch. 4, p. 79.

[62] Harding, C. (1987) The Vermont Longitudinal Study of Persons With Severe Mental Illness, II. American Journal of Psychiatry, Vol. 144, pp. 727-735.

[63] Moran, M. (2004) Schizophrenia Treatment Should Focus on Recovery, Not Just Symptoms. Psychiatric News (American Psychiatric Association), Vol. 39, No. 22. Also Jacobson, N., and Curtis, L. (2000) Recovery as Policy in Mental Health Services: Strategies emerging from the States. Psychiatric Rehabilitation Journal, Vol. 23, No. 4.

[64] Fisher, D., and Ahern, L. (1999) People can recover from mental illness. National Empowerment Centre, http://www.power2u.org/recovery/people_can.html. It is interesting to note in this context the results of World Health Organization studies conducted in 1979 and 1992 that looked at recovery rates from schizophrenia in developing compared to industrialized states. Using matched controls, they found recovery rates in developing countries were twice those of industrialized nations.  Some commentators have speculated that the more social approach of the developing countries worked to keep people connected to their communities and assisted in their recovery.

[65] The Committee acknowledges that there is a wide-ranging debate surrounding the applicability of the term “recovery” to some disorders, particularly autism. The Committee heard from a number of passionate advocates for autistic people that recovery is not their goal, because they do not consider autism to be an illness from which recovery is necessary (see also Chapter 6 on Children and Youth for more discussion of issues relating to autism). This is not an issue that the Committee can decide. It will therefore use the term recovery in the way described in this chapter.

[66] 14 June 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/22eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[67] 9 May 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/15evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[68] Macfarlane D. (June 2005) Current state of collaborative mental health care, p. 5. Report prepared for the Canadian Collaborative Mental Health Initiative, Mississauga, Ontario. Available at: http://www.ccmhi.ca.

[69] 17 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/07ev-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[70] Provincial Forum of Mental Health Implementation Task Force Chairs. (December 2002) The Time Is Now: Themes And Recommendations For Mental Health Reform In Ontario. http://www.health.gov.on.ca/english/providers/pub/mhitf/provincial_forum/provincial_forum.pdf.

[71] Standing Senate Committee on Social Affairs, Science and Technology. (November 2004) Report 2 — Mental Health, Mental Illness and Addiction: Mental Health Policies and Programs in Selected Countries, Ch. 4, p. 71.

[72] Canadian Mental Health Association, Ontario Division. (March 2003) Recovery Rediscovered.

[73] See appendix to this chapter. Also Jacobson, N., and Curtis, L. (2000) Recovery as Policy in Mental Health Services: Strategies emerging from the States. Psychiatric Rehabilitation Journal, Vol. 23, No. 4.

[74] 6 June 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/18evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[75] In the broader health care field, one can think of the issue of primary care reform as offering a cautionary tale in this regard. For over a decade, every major report on the hospital and doctor system in Canada has pointed to the need for significant reform to the ways in which primary health care is delivered, but progress on the ground has been very slow.

[76] 2 June 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/17eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[77] See Standing Senate Committee on Social Affairs, Science and Technology. (October 2002) The Health of Canadians — The Federal Role, Volume Six: Recommendations for Reform, Ch. 17. Note that specialized psychiatric hospitals were explicitly excluded from the purview of the Canada Health Act because they were deemed to be long-term care facilities whose regulation was not the intent of the Act.

[78] 15 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/05evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[79] 15 June 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/22evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[80] 17 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/07ev-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[81] Ontario’s Community Mental Health Evaluation Initiative. (October 2004) Making a Difference, p. 5.

[82] Ibid., p. 9.

[83] Trudel, J.-F., and Lesage, A. (2005) Le sort des patients souffrant de troubles mentaux très graves et persistants lorsqu'il n'y a pas d'hôpital psychiatrique: étude de cas. Santé Mentale au Québec, Vol. XXX, No. 1, pp. 47-71.

[84]    Centre for Addiction and Mental Health. (2001) Strategies for Mental Health Integration: A Review, p. 13.

[85]    Ibid.

[86] Glouberman, S. and Mintzberg, H. (Winter 2001) Managing the Care of Health and the Cure of Disease, Parts I and II. In Health Care Management Review, Vol. 26, Issue 1, pp. 72-4 (emphasis added). Everett, B., Lurie, S. and Higgins, C. (2001). The Whole Picture: A provincial framework for redesigning the Ontario mental health system. Canadian Mental Health Association, Ontario Division, and Ontario Federation of Community Mental Health and Addiction Programs.

[87] Ontario Health Services Restructuring Commission. (2000) A Legacy Report: Looking Back, Looking Forward. Quoted in Everett, Lurie, and Higgins (2001).

[88] Lurie, S. (June 2002) Mandated Collaboration: Command and Control or Emergent Process. Canadian Mental Health Association, Metro Toronto Branch, p. 37.

[89] In this regard, the Committee takes note of the fact that even in countries such as Australia that have set an international standard in mental health planning, there are indications of how difficult it is to sustain the momentum for reform. In a recent (May 2005) report to a parliamentary committee titled Not a Failure of Policy, It Is a Failure of Implementation and Delivery, the Mental Health Commission of Australia writes that “the last five or six years have seen what was a significant policy initiative lose direction and show signs of stress and indeed crisis.” It identifies a number of causes for this evolution, including: (a) “the burden of mental illness and associated disability within the community is not matched by the funding allocated to prevent, relieve and rehabilitate people experiencing mental health illness”; (b) “there is a significant mismatch between the community based mental health service model and the current system of still allocating funding largely on the old service model of ‘beds and buildings’”; and (c) “the failure to agree on and implement a national framework for accountability.”

[90] Jacobson, N., and Curtis, L. (2000) Recovery as Policy in Mental Health Services: Strategies emerging from the States. Psychiatric Rehabilitation Journal, Vol. 23, No. 4. 

[91] Ibid.

[92] Canadian Collaborative Mental Health Initiative. (2004) Ontario consumer consultations.

[93] Anthony, W. A. (1993) Recovery from mental illness: The guiding vision of the mental health service system in the 1990s. Psychosocial Rehabilitation Journal, Vol. 16, pp. 11-23.

[94] Anthony, W. A. (2003) The Decade of the Person and the Walls that Divide Us. Behavioural Healthcare Tomorrow. http://www.bu.edu/cpr/catalog/articles/2003/anthony2003c.pdf.

[95] Fisher, D. B. (1999) A New Vision of Recovery: People can fully recover from mental illness; it is not a life-long process. National Empowerment Centre. http://www.power2u.org/recovery/new_vision.html.

[96] Ibid.

[97] http://www.empowermentconnection.com/approach.html.

[98] An Empowerment Model of Recovery from Severe Mental Illness: An Expert Interview with Daniel B. Fisher, MD, PhD. (January 2005) Medscape, Psychiatry & Mental Health, Vol. 10, No. 1.

[99] Deegan, P. (1996) Recovery and the Conspiracy of Hope. 6th Annual Mental Health Services Conference of Australia.

[100]   Gordon, A. (2005) Combating the stigma of mental disorders: New initiative to kick off mental health week. Toronto Star, 29 April 2005.

[101]   15 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/05evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[102]   Standing Senate Committee on Social Affairs, Science and Technology. (November 2004) Report 1 — Mental Health, Mental Illness and Addiction:  Overview of Policies and Programs in Canada, Chapter 11, Section 11.3, p. 238.

[103]   Ibid., Chapter 11, Section 11.7, p. 246.

[104]   Standing Senate Committee on Social Affairs, Science and Technology. (November 2004) Report 3 — Mental Health, Mental Illness and Addiction: Issues and Options for Canada, Chapter 6, Section 6.5, p. 45.

[105]   6 June 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/42471-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[106]   6 May 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/18eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[107]   11 May 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/15evf-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[108]   11 May 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/15evf-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[109]   6 June 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/42470-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[110]   6 June 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/42471-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[111]   Standing Senate Committee on Social Affairs, Science and Technology. (April 2002) The Health of Canadians — The Federal Role, Volume 5, Chapter 2, Section 2.5, p. 60.

[112]   Standing Senate Committee on Social Affairs, Science and Technology. (November 2004) Report 1 — Mental Health, Mental Illness and Addiction:  Overview of Policies and Programs in Canada, Chapter 8, Section 8.2.7, pp. 164-165.

[113]   Ascentum Incorporated. (June 2005) Report on the Online Consultation by the Standing Senate Committee on Social Affairs, Science and Technology, p. 40.

[114]   Ibid., p. 38.

[115]   The Charter of Adult and Family Rights and Responsibilities was prepared by The Adult and Family Rights and Responsibilities Charter Committee of Cranbrook, British Columbia.

[116]   The Adult and Family Rights and Responsibilities Charter Committee. (May 2003) Charter of Adult and Family Rights and Responsibilities, p. 12.

[117]   The Bill of Client Rights was developed by the clients, families and staff of the Centre for Addiction and Mental Health in Toronto, Ontario, and endorsed by its Board of Trustees.

[118]   Centre for Addiction and Mental Health. Bill of Client Rights.

[119]   Ibid., Right #6(4), p. 5.

[120]   Information and Privacy Commission of Ontario. Frequently Asked Questions:  Personal Health Information Protection Act - What rights do individuals have?          http://www.ipc.on.ca/scripts/index_.asp?action=31&P_ID=15371&N_ID=1&U_ID=0&LG_ID=1#individuals.

[121]   Young, M. (December 2000) The Federal Role in Health and Health Care. TIPS-59E, Parliamentary Information and Research Service, Library of Parliament, Ottawa, p. 1.

[122]   Ibid., p. 2.

[123]   Canada Health Act, c. 6, s. 4.

[124]    “Extra-billing” is defined in the Canada Health Act as “the billing for an insured health service rendered to an insured person by a medical practitioner or a dentist in an amount in addition to any amount paid or to be paid for that service by the health care insurance plan of a province.”

[125]    “User charge” is defined in the Canada Health Act as “any charge for an insured health service that is authorized or permitted by a provincial health care insurance plan that is not payable, directly or indirectly, by a provincial health care insurance plan, but does not include any charge imposed by extra‑billing.”

[126]   Standing Senate Committee on Social Affairs, Science and Technology. (November 2004) Report 1 — Mental Health, Mental Illness and Addiction:  Overview of Policies and Programs in Canada, Chapter 3, Section 3.4.1, p. 58.

[127]   Report of the Auditor General of Canada — September 2002, Chapter 3, “Health Canada — Federal Support of Health Care Delivery,” paragraph 3.2.

[128]   Ibid., paragraph 3.76.

[129]   R.S. 1985, c. H-6, s. 2.

[130]   Uniform Law Conference Web site, http://www.chlc.ca/en/civil.

[131]   Ibid.

[132]   An Act to amend the Criminal Code (mental disorder) and to make Consequential Amendments to Other Acts, S.C. 2005, c. 22.

[133]   Raaflaub, W. (June 2005) The Mental Disorder Provisions of the Criminal Code. PRB 05-05E, Parliamentary Information and Research Service, Library of Parliament, Ottawa, p. 5.

[134]   Ibid.

[135]   16 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/06evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[136]    An Act to amend the Criminal Code (mental disorder) and to make Consequential Amendments to Other Acts, S.C. 2005, c. 22, s. 3.

[137]   16 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/06evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[138]   16 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/06evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[139]   15 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/05evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[140]    6 June 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/18eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[141]   6 June 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/18eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[142]   11 May 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/15eve-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[143]   16 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/06eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[144]   16 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/06evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[145]   16 February 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/soci/06evb-e.htm?Language=E&Parl=38&Ses=1&comm_id=47.

[146]   13 April 2005, http://www.parl.gc.ca/Content/SEN/Committee/381/lega/09eva-e.htm?Language=E&Parl=38&Ses=1&comm_id=11.


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