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THE STANDING SENATE COMMITTEE ON Social Affairs, 
Science and Technology

EVIDENCE

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TORONTO, Tuesday, February 15, 2005

The Standing Senate Committee on Social Affairs, Science and Technology met this day at 9:00 a.m. to examine issues concerning mental health and mental illness.

Senator Michael Kirby (Chairman) in the chair.

[English]

The Chairman: First, let me say welcome to everybody as we begin the first day of our series of public hearings across the country that will see us visiting every province and territory between now and the end of June. We are beginning here in Toronto, followed by Montreal, and then branching out to the East and the West.

May I say to the people who are here, and also because I know there are some media here, that as a committee we have been very pleased with the interest that has been shown in the reports that we put out last November, and particularly pleased with the response that we have had from survivors, consumers and their families.

As some of you may know, when we tabled the reports last November, we put on our website a short questionnaire, seven questions, to try to give consumers and their families an opportunity to tell us about their real-life experiences, recognizing that that is very difficult to do in a public forum, and that from the point of view of those of us around the table, it is the human face of mental illness and addiction issues that has really driven us to undertake this work.

As I think some of you know, because I have said it in speeches repeatedly, many of us on the committee have had a member of our reasonably immediate family suffer from mental illness, and so we have had some firsthand experience with how poor the system is, frankly, and, indeed, one of the dangers in health care. When we read stories of first ministers' meetings and talk of billions of dollars and so on, it has always struck us that none of the media coverage, none of the statements by political leaders, or very few of them, at least, makes any reference to patients. They make no real reference to the human impact of the health care system.

The reason we began the report that we issued last November with a Part I called “The Human Face of Mental Illness” was to try to drive home to people who might read that report that we are not just talking about dollars, organizations, structures and so on. We are talking about real services for real people, and it is for that reason that our first panel this morning on the first day of our cross-country hearings is really designed to be focused on the issue of people who have suffered from mental illness, their families, and so on.

I look forward in our two sessions this morning to hearing personal stories from people who have been kind enough to agree to come forward and talk to us because I think it is critical that the committee not lose sight of the fact that this is very much a human story and a human tragedy, and one which we intend to try to make better.

Just to put the situation in perspective — I will get this duplicated after — last Saturday, there was a cartoon in the Halifax ChronicleHerald that I think all of you who have had experience with the mental health system would absolutely understand. The cartoon shows a little desk with a doctor and a nurse and a sign saying “Mental Health Services,” and all the people lining up for service are on the other side of a chasm that looks about as wide as the Grand Canyon; and in the caption the nurse is saying to the doctor, “Well, of course, there is a danger that people could fall through the cracks.” I think that that puts the nature of the current system very much in perspective.

In our opening session this morning, we have Pat Capponi, Darrell Powell, Diana Capponi, and Helen Hook, who is the Coordinator of the Consumer/Survivor Information Resource Centre here in Toronto. I will ask each of them, beginning with Ms. Diana Capponi, to make a brief statement and then we would like to ask you questions.

May I say to all four of you, thank you very much for coming. By the way, just for the record and my colleagues, we have had over 500 responses to our questionnaire when most of us guessed we would not get 100. We just did not think it would work. They are some of the most emotional reading material that I have ever seen, and it will be an enormous benefit for us to be able to include excerpts in our final report. I want to publicly thank everybody who has taken the time to reply to our questionnaire.

Diana Capponi, the one thing I would ask you to do when you speak is to push the button so that a red light appears on your microphone. Thanks.

Ms. Diana Capponi, As an individual: Thank you for the opportunity to provide pertinent and relevant information regarding people with mental health and/or addition issues, and their economic and employment dilemmas. I, of course, will be responding as well to your draft report No. 3.

I am not surprised to note that the chapter on employment was one of the smallest in the report. This is not unusual, given that the notion of our community having full access to education, employment and economic opportunities is a relatively new one. Until about 10 years ago, we were told to be content with a disability cheque, our medication cards, of course, and, usually, a substandard type of housing that would not be acceptable to most Canadians. We had learned to be grateful for the often decrepit living situations our so-called support people found for us.

Full citizenship rights are enshrined in our nation's Charter of Rights and Freedoms. However, many of those rights that others take for granted are not afforded to us. To begin, I will explain my role here in Ontario as it relates to the economic and employment situation of people who have been in our mental health and addiction system.

I left the mental health and addiction system 24 years ago, after receiving services for the first 28 years of my life for both mental health and addiction issues. I have not re-entered the system as a client since that time, as after many years in and out of the system, I finally learned it was up to me to create change. To be dependent on others, to accept their limited views of my potential, did more damage than good.

The Chairman: Can you speak a little more slowly? The translator is having trouble. Thanks.

Ms. Diana Capponi: Okay. To be dependent on others, to accept their limited views of my potential, did more damage than good. Luckily for me, I was the type of person that would not take no for an answer. Since I came to this conclusion, it became clear to me that my role was to begin to create some hope and change for individuals who had developed a poverty of soul, one that only exists for my community; no hope for the future, surrounded by those who constantly refer to you as damaged goods, as a psychiatric label, as someone to be tolerated rather than welcomed.

Your report has a chapter on discrimination. Discrimination is rampant in this country. It is shameful that little federal government action on the issue of discrimination in mental health-related issues has taken place. I feel strongly that full integration of people with mental health and addiction issues will go a long way toward changing attitudes and beliefs.

Full integration, of course, includes gainful employment. The small shift over the past 10 years I would attribute to the work of those individuals with mental health histories involved in the formation of self-help groups and, in particular, those who have developed and operated alternative businesses.

Alternative businesses are managed and controlled entirely by people with mental health and addiction histories. For some strange reason, they exist only here in Ontario. Some of you may be familiar with A-WAY Express Courier or the Raging Spoon restaurant. These businesses date back about 25 years, and differ from the traditional approach of sheltered workshops or affirmative businesses, those that are owned and operated by non-profits. Although these businesses were described as a “most effective practice” by your government's In Unison report in 2001, it would appear you have little information about them.

Much international demand exists for alternative business development information, and I was quite disappointed not to see any mention of it in your report. In fact, it would appear that most of the content in chapter 3 refers to those individuals presently attached to the workforce, with very little on people who have never had opportunities, or were discouraged from attempting to better their own lives. I myself was told to forget about going to school, to forget about having a career, and to come to terms with my mental health issues. Thank God I did not believe them, or I would not be here today. I would be one of many thousands living a substandard life of medications, craziness and dire poverty.

I have spent the last 20 years of my life dealing with employment and business development. As the past executive director of Fresh Start Cleaning and Maintenance, I quickly learned how people will rise to expectations, or will reduce themselves to the diagnostic category that workers use to determine their efforts.

The Ontario Council of Alternative Businesses was quickly developed, and against all odds, they managed to develop another five businesses here in Toronto.

There is a film entitled Working Like Crazy that I have included in your package. It is the product of a partnership between the National Film Board and the council and has been screened across North America and the United Kingdom, unfortunately to audiences who could relate all too well to the circumstances faced by those who have been in the system.

The businesses work so well because they are designed to meet the particular needs of groups wanting economic opportunity. Today, after a little over 10 years, many of us in Ontario are demanding jobs, demanding to be paid for the work that we do, and increasingly expressing interest in furthering our education. All this, of course, is within the context of others not believing in us. For far too long, we have been told not to try to integrate, not to try to work, not to try to get better, because our perceived illnesses would never fade, and, of course, the classic tale, “This will be too stressful for you.”

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.

Finally, the community has now seen the impact of work, of expectations, and is demanding more. We must ensure that your committee addresses the needs of those individuals kept out of the workforce for so many years and who have been institutionalized to think of nothing more than the next cheque. Good health implies participation, self-determination and good self-esteem.

It is stated we have an 85 per cent unemployment rate, an intolerable situation in any community, whether geographic or social. The federal government needs to act on this alarming statistic, and some of my ideas in this regard follow.

Recently, the federal government has determined they will no longer contract out services for employment supports, but has established a call for proposals. This, of course, is the outcome of a report commissioned by our government and completed by IBM. Those agencies with a proven track record now had to compete for dollars. There is much uproar today that the end result is private-sector vocational firms have won out. Those groups that were most effective were denied, with no rationale.

I recently attended a community forum where there was outrage at the lack of information and the effective closing down of services. Link Up Employment Services, one of the most effective for my community and well regarded by the private sector, has been shut since January 31, with no reason given. This was a service entirely driven by people with disabilities.

We were hopeful after hearing in the last throne speech that the Prime Minister has recognized and valued the work of social purpose enterprises. Yet, Industry Canada, taking the prime responsibility for assisting and supporting these initiatives, has little sense or understanding of the beauty of the alternative businesses, which have flourished here in Ontario.

Amazing partnerships have been created, and most importantly, people are sustaining their jobs and their businesses with a little assistance from networks and coalitions such as the Toronto Enterprise Fund. This is one of the most exciting initiatives in this country, providing hundreds of individuals with employment and economic opportunities. Yet, Industry Canada knows very little, if anything, about it.

There are groups such as Parkdale Green Thumb Enterprises, which contracts with local business improvement associations to keep areas cleaned and flowers growing, a novel idea that suits both stakeholder groups, but it has not been re-created elsewhere in the country. If we are interested in tackling discrimination, these groups are the experts. We need to tap into their skills and expertise, not try to develop ideas from everyone else.

The World Health Organization looks at disability not through an illness model, but more holistically, including the barriers created by society. It is not the disability that prevents people from working. It is the barriers largely created by attitudes.

I now want to refer to the issues you have touched on in your report. First, I wonder why there is no national definition of “disability.” There is a definition in the national Human Rights Code and the Employment Equity Act, but why can provinces ignore this and develop their own? This allows provinces to in fact continue to discriminate against people with certain disabilities — in particular, people with addiction issues. Here in Ontario, an addiction issue is not considered a disability, even though it is in the national government's definition. Furthermore, it states that in cases of ambiguity, the federal definition would apply. Why has that not been successful here in Ontario?

As for people already attached to the workforce, here is a document entitled “Navigating Workplace Disability Insurance: Helping People with Mental Illness Find the Way.” How is it possible that in Canada today a group of people with disabilities, mental health and addictions issues, require a guide to receive the most fundamental benefits that other Canadians take for granted?

Canada Pension Plan, Employment Insurance and private insurers seem to conspire to make the acquisition of these paid benefits increasingly difficult. This is only one of the problems encountered by people with mental health and addiction issues. CPP, although recently reviewed, takes a naive and quite ignorant approach to the issue of mental health, sticking to a medical model of diagnosis, even though, clearly, the medical model is under review today.

All too often, people dealing with insurers, the provinces, cannot stand the stress or the financial burdens placed on them at a time when they are not well enough to work. Many of us firmly believe that private insurers, who I believe are federally regulated, must be accountable for their treatment of people with mental health or addiction issues.

What is the federal government doing to ensure that appropriate processes and procedures are applied to people with mental health and addiction issues? Why are private insurers not encouraged to develop appropriate return-to-work programs, not punitive ones? Does the federal government truly believe that they treat our community the same as they do people who are receiving chemotherapy? If so, you are most sadly mistaken.

I would suggest, unfortunately, most people struggling with mental health and addiction problems know they should keep their illness or issues a secret at the workplace, which is not a healthy alternative. Measurement of long-term and short-term disabilities will not determine workplace healthiness. There must be a culture of respect and understanding of all employees. This is the true measure of mental health in the workplace. Certainly, employee assistance programs must learn how to handle mental health issues better. For many, three to four visits will not suffice, and naturally, this is again all related to workplace wellness.

Where is the support for Canadian employers? Although the federal government has stated that Canadian employers must comply with the Employment Equity Act, there is very little support for them to do so. Where do employers go to find resources and information on the Human Rights Code, on the return to work and duty to accommodate issues? Today, even though a majority of Canadian employers have less than 100 employees, there is no service for them to access, other than fee-for-service resources. What happened to a service like CanJana? This was a service of the federal government that allowed employers to access the resources necessary to ensure the retention and recruitment of people with disabilities. Since this service was closed, there has been nothing to take its place.

CPP needs a complete review of its practices as they relate to people with mental health and addiction issues. As with our society in general, there are glaring examples of discriminatory procedures and processes. The people working within these systems require a total re-education in regard to their vocational and employment support programs, many of which are punitive in nature and discriminatory, in that people with certain diagnostic labels will be denied access. This is rampant within the CPP system.

What is the federal government doing to support the exchange of knowledge among doctors and employers? Doctors have very little information in regards to return-to-work issues, or, for that matter, employment and its effects on people with disabilities. Yet, who determines when a person returns to work? Often, it is the doctors. We have had much exciting research on return-to-work issues, the reduction in time that people are away from work and the cost to Canadian employers of long-term disability claims. Yet the government is allowing some of the most effective and prominent round tables to disappear rather than promote the healthy workplace practices that would go a long way toward promoting the effective retention of employees with mental health or addiction issues.

I was excited to note that the federal Minister of Health has appointed both Michael Wilson and Bill Wilkerson to review the issue of mental health and the workplace within the federal government workplace. It is Canada's largest employer, and I would suggest there are changes to be made. I would hope that these changes would include the targeted recruitment of people with mental health or addiction issues, and that the federal government will go well beyond the efforts of our banking sector, in that all positions, all levels or classifications of employees should be open to people with mental health and addiction issues. This would demonstrate to the Canadian public and your employees that you are “Walking the talk.”

Finally, a review of employee assistance programs, private insurers, CPP, and a consistent definition of “disability” may go a long way in assisting those employees working with a mental health or addiction issue. As long as organizational and employer discriminatory attitudes exist, there will continue to be barriers to employment and to the full enjoyment of Canadian citizenship rights. We need to address the employment and economic needs of those who have been left outside of the Canadian workforce, those people who so need to be included. You need to study initiatives such as alternative businesses. Have the “social enterprise” definition include those initiatives that have been most successful for people with mental health and addiction histories.

Do not accept limited approaches and subjective viewpoints on people's ability to work. Please continue to hear the success stories of people like myself and those working with the system, and work towards ensuring that all Canadians enjoy the benefits of our citizenship.

Thank you.

The Chairman: Thank you, Diana.

Pat, the floor is now yours.

Ms. Pat Capponi, As an individual: Thank you, and thanks to the committee for having me back. I appreciate that. I will be addressing a gap in the report.

Senator Kirby, there is another cartoon that we used to see in the 1980s. It was of a big, bleak hospital on a hill, and people leaving the hospital were falling off the cliff, which, unfortunately, is still true today.

For middle class individuals, being diagnosed with a serious mental illness creates a world of hurt and a lifetime of challenges. You will no doubt hear today how difficult their lives can be. For those labelled “chronic,” however, those challenges increase exponentially, as it means that the helpers have given up.

The earliest experiences of many chronic mental patients were defined by poverty, as they were often born into families and circumstances already straitened. Treatment meant confinement and custodial care on the back wards of provincial institutions, sometimes for decades, where chronic patients learned over and over again the lessons of absolute dependence in every aspect of their meagre existence, as well as the harsh consequences of resisting those in authority.

Infantilized, over-medicated, shocked, lobotomized and controlled, our world was dramatically reduced to endless card games, daytime television shows, and the constant smoking of bales of tobacco that was the only reward for good behaviour. There were no expectations placed on us, no decisions we were required to make. The world went on quite well without us, until deinstitutionalization, that is, the mass evictions from provincial hospitals, with no attempt to re-orient individuals to this new freedom.

We were broken, hugely vulnerable, unaware of our rights or obligations and often illiterate, with no job skills, no friends and few remaining contacts with families. We looked strange as well, with the easily identifiable “thorazine shuffle,” the bloating from years of institutional diets, and deep racking coughs from all the unfiltered, cheap tobacco that was our only pleasure.

We were ripe for exploitation, physical and sexual abuse, and the temporary escape into addictions. We had no defences. In our new world, we were still confined by our fear, poverty and angry neighbourhood reactions to our presence. Exhausted by the medications that crippled us, we slept away long hours of the day and the night in overcrowded rooms. That was the scope of our lives, and the few professionals who signed prescriptions for us, or moved us from one substandard boarding home to another, felt it was all we were capable of.

Years went by. Some died by suicide or from physical illness. Others continued in this half-life while advances in care went to benefit those deemed more worthy.

Worse, we saw that as the older patients faded away, newly labelled men and women from the same social strata took their places and quickly learned many of the same lessons of powerlessness and defeat. Institutionalization was continuing in the community, defined by the lack of care and the indifference to our plight.

Some of us, a very few at first, who had not been locked up as long as others, who had managed to live a little between hospitalizations, recognized the wrong that was being perpetrated on our community. We started to question received wisdom about who we were and what we were capable of. We began to engage in a struggle in the early 1980s that would take a quarter of a century to see gains and a real difference, and we did it largely without help or support from those charged with our care, with the notable exception of Dr. Reva Gerstein, who you will be hearing from later on today.

We began to understand that the way we looked and felt, the way we were forced to live, our isolation, exclusion and hopelessness, the excruciating poverty, had little to do with whatever diagnosis we carried. We looked at the simply poor, at how the stresses and strains of trying to keep a roof over their heads and food in their stomachs created negative emotions that mimicked the symptoms of mental illness. We were miserable because we were thigh deep in miserable circumstances.

In 1995, the Ontario Council of Alternative Businesses lobbied, and was funded, to develop survivor businesses in the province, a radical departure from traditional vocational rehabilitation. We had role models where we had none before. We were achieving, breaking myths and assumptions about who, and what, we were, and we were forming a community.

Chronic psychiatric patients showed commitment in reporting for work on time, in acquiring new skills, in creating lasting friendships, and people grabbed every opportunity to learn from each other's experiences. We were successfully attacking the stigma within and without the mental health system, where millions of dollars spent on elaborate advertising campaigns had failed.

Still, for every advance, there are setbacks. A chronic mental patient is just that in the eyes of many. We are not entitled to be full human beings behind that label, not expected to have basic personalities that mirror those in the greater population — good, bad and everything in between. A schizophrenic is a schizophrenic and every action is attributed to that disease and not to the underlying nature of the individual. A person who is bitter and angry, or who is addicted to crack or other drugs, does something terrible, and a chorus of voices is raised against all who carry the same label. Our civil rights are affected, as laws are passed to protect society from the mentally ill.

As a result, we have Assertive Community Treatment, or ACT, Teams that are primarily there to ensure that the client takes the medication. Though the mandate was supposed to be broader, and remains so on paper, there are few decent places for teams to refer their clients to, and even fewer work opportunities. For staff to speak of this is to endanger their jobs; to point out that housing is terrible is to endanger their jobs. 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.

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 in his body to be angry, the dosages will ensure that that anger is forgotten.

We have shown that those “chronic” who work within survivor-run businesses require less medication and spend less time in hospital. We have shown that the worst thing that was done, and is still being done to us, was to tell us that we could not achieve, that nothing could be expected of us without risking another episode of psychosis; thus stealing lives and hopes and whatever shreds of ambitions we carried within us. Replacing all that with custodial care inside and outside institutions is an ongoing crime against our community, and our country's shame.

We are transforming ourselves in spite of stigma, coercion, poverty, and a backlash from telling our stories. It is a slow process, made more difficult by a system that will not examine its own prejudices, its own contribution to stigmatizing those with this dual diagnosis of poverty and mental illness.

Resources that are now being used to keep this segment of the seriously mentally ill population tied to beds in medicated fogs need to be refocused to liberate all the human potential so long starved of opportunity and hope. We need investment of funds and energies to assist with this ongoing human and community development, with the creation of opportunities for learning and growth and work. We need some of the dollars now spent in lecturing the public about the consequences of stigma to be used to eradicate the stigma within the system against those least able to combat it. Most of all, we need to eliminate the ability of the system to declare anyone beyond hope, as it seems to be disproportionately used against those who come from the ranks of the poor and the friendless.

Thank you.

The Chairman: Thank you, Pat, for that very moving presentation.

Next, we have Darrell Powell, who has come all the way from Vancouver to be with us today.

Mr. Darrell C. Powell, As an individual: Senator Kirby, honoured members of the committee, I have nothing prepared for this hearing, but I intend to tell you a story about my experience and where I feel it fits in with the committee's work.

There is an angle to discrimination and stigmatization that is much more sinister than you may want to believe. Government and the medical services people, in my opinion, are the greatest purveyors of this discrimination for very “you-genda” driven purposes.

I was actually born in Ontario. I left home at a fairly young age and moved to Vancouver in the early 1970s, where I started work in the shipyards. I have a strong sense of duty, coming as I did from a fairly poor background — a kid from the street from Yorkville. I found I liked working around boats and in the shipyards. I excelled at it. I did very well.

In 1990-91, I sustained some injuries to my knees, and consequently ended up becoming involved with the Workers' Compensation Board of British Columbia. At that time, the standard rule of thumb was to dump the claims at the appeal board, generate erroneous decisions and let somebody else decide whether the claim was valid or not.

This has been repeated over and over again and I am sure everybody here is quite familiar with abusive stories about workers' compensation boards. The problem I see is dealing with the discrimination and stigmatization that can actually leave a person criminalized in this country, whereby 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.

Right now, I am involved in something that has continually diminished me financially. I have gone through 16 years of litigation. It has affected my health, physically and mentally, so now I actually do have a problem under the DSM IV.

What happened was I had to win at certain levels, which I did. Every time I won my case, they seemed to get a bit nastier in their methods, to the point where quite a few people started getting involved, including an ombudsman and MLAs, because of what was going on, and I won in the appeal system in 1996.

When I was younger, I did have some problems. I did seek out counselling, and I cannot remember specifically what it was that I actually went for, outside of maybe some depression or whatever. However, it was never determined that I had a biological or biochemical or personality disorder, other than having a personality at all. I also used my passionate personality to explain my successes in the shipyards.

Onward it went, to the point where the compensation board was actually misrepresenting the file in order to not pay the claim, to say that they had actually created a rehabilitation plan when they had not, and I brought this to the attention of people outside the organization and of the internal ombudsman.

This took another four years, until it got to the point where a director inside the workers' compensation board blew the whistle. She told me personally that she could not, ethically, stand for the way they had treated my claim and the damage they had done to me. She has since gone off sick leave and retired, I believe.

This brought about in 2000 an intervention in my situation, the second in the history of the Workers' Compensation Board of British Columbia, whereby the CEO at the time used a special mandate to stop the destruction of my mental and physical health and also — because they did not retrain me — to set the pension, and he fixed the claim up. I got lots of apology letters, and I am in receipt right now of a pension that I am sure they are probably working on this very minute to undo.

Since that time, the vice-president who was left to deal with the situation and corporate planning people have been trying to create a vocational plan in order for me to focus on something else in life and regain some kind of life outside the WCB, as the workers' compensation board officials had become the predominant people in my life.

When you are involved in workers’ compensation, the effects, of course, run through the medical system. I have had eight surgeries. The chronic pain assessment was done in 2000. Consequently, it moved into an area that has been referred to in many places as prejudicial fishing trips into somebody's past to see if there are any pre-morbid factors, as they say, and if they find anything, God help you.

They hired an external psychologist to do a very gruelling assessment of every aspect of your life that can take up to eight, ten hours. They pull information from everywhere.

Just as a footnote, up to that point, the year 2000, they had continually left information on my file lying around. I guess maybe they were thinking I was planning to make a claim for psychological damages, so they pulled all the information, left it on top of the file for over six years — without making an adjudication — for every claims handler, everybody who picked up my file, to see.

The isolation that comes with discrimination is much more serious and the cost to the individual is extremely high. I cannot access my Charter rights. I am trying to, but it will take $300,000 and a legal team to do it. They have a full legal team and they pull money out of the accident fund in order to defend their erroneous actions, which I will explain in a minute.

When they do an assessment for chronic pain, as I have mentioned, they go into your psychological past. I had seen a psychiatrist, and that was my choice, and I did not feel that there was anything wrong with that, as opposed to talking to friends or family or whatever. I felt it was good to get somebody from the outside to look at the situation. None of this ever had any effect on my ability to obtain work, to maintain work, or anything like that, and that is well evidenced in the file and in my life history.

Therefore, there was a big to-do to get this assessment done. The director who blew the whistle on the board's attitude towards me told me what they used to call me in private meetings, and I probably cannot say the words here. It was probably the worst situation that you could imagine, knowing that these people are in power and can literally cut off your income and put you out on the street.

They finally got their chronic pain assessment and it did not come back with the results they wanted. It did not come up with any pre-morbid conditions, and in fact, to quote it almost directly, “There was nothing in any way in Darrell's past that comes anywhere close to the injuries and his dealings with the WCB as affecting his current psychological status.”

As I said, apologies were given to me. On the same day I was having surgery on my knee, the vice-president of the workers' compensation board told an MLA that I was incurably mentally ill and would always suffer from stress, and he withheld the very report that they hired an outside person to produce, a report that said the opposite.

Now we head into the area of what do you do at that point? Then I realized — I actually had some indication in the past four or five years — what had happened. I only found out about it recently, since 2002, because of the condescension. I started to realize the way they were talking to me was meant to get me to go along with rewriting history — oh, some people just seem to have more trouble than others going through the process — and they started to, what I call set me up. I was suspicious as it was, and by this time, the president who had intervened was gone from the picture, or almost, and he was not made aware of what was going on by the vice-president or the head of corporate planning.

In 2000, they gave me my pension. They put the claim into the “sensitive claim” area, with rape victims and other claims of that sort, because I, indeed, was a victim of the compensation board itself. It is an embarrassment to them. They have since pulled it out rather than have to explain why the file was in that area.

In 2000, the Campbell government eviscerated the WCB and brought about some pretty drastic changes to the act, and one of them was the reclaiming of CPP benefits from injured workers’ disability benefits.

To put it in its worst context, if you get $600 from CPP disability until you are age 65, and you are getting $300 from the compensation board, they take half of your CPP, so in a sense, they are not paying for your compensation at all. It is CPP.

In 2002, they issued a letter of consent for third-party information and I would not sign it. At that point, I realized that there was no internal protocol, which they were told to create, for dealing with my file so that I did not have to continually fight with every person that came across that file. Consequently, somebody picked it up and sent me one of these letters to authorize a free flow of information between CPP and WCB, but they also asked for a free flow for a third party. CPP, when I phoned them in Ottawa, said that no, they were not involved in that. That is something that WCB is doing on its own. They get their own information.

That shows the political mood of what has gone on with WCB in the province of B.C.

The Chairman: Darrell?

Mr. Powell: I refused to sign —

The Chairman: I want to make sure we have time to hear both Helen Hook and to ask you questions, so can you summarize by telling us where you are right now?

Mr. Powell: Okay. I will wind it up.

In 2000, I was threatened with a vendetta by somebody at the WCB. This prompted me to try and follow through on the protocol and get them to put it on paper, because they did not do it internally. In the process of doing that protocol, getting that written up by the vice-president, the mental health issues were opened up. I tried to get them to put on paper once and for all that there were no pre-morbid factors, and they would not do it.

Consequently, as it sits now, I am left with extremely bad health, a heart condition, and I have ground the teeth out of my head, which they have admitted and paid for, but when it came to internally or anybody else outside the WCB, they used this what I call “rainy day syndrome.”

“Say he had pre-morbid conditions to anybody else who asks outside the WCB and internally,” explaining to their own officers why they are doing some things the way they are. Therefore, they do not have to admit they made a mistake. It works very well. They have enough power to pull it off.

Therefore, I have made myself available to this committee and I intend to hang around, and I realize that this story is complex. I have brought an affidavit from the MLA involved, and I consider everything I am saying to be under oath. I am also willing to give access to any of my personal information with the government in B.C. or the workers' compensation board.

I do not expect to win this case. They have money, and I have $60,000, a hole in my heart and a large aneurysm, and I almost bit my tongue off a month ago, so I do not expect to get through this. I do not expect to make it through. I am not worried about the money.

To finish off, I think that you have to decriminalize being mentally ill, and misdiagnosis or wrong diagnosis should be dealt with in a much more serious fashion. I think the exclusion that people have, if they are an insurance company or a benefit provider, that you cannot bring a case of discrimination against them should be removed from the Charter.

The government, especially the Government of B.C., will not do this out of goodwill. They will hold on to their power in the province. In fact, they are trying to separate further from Ottawa, but one thing I found in the law is that they have to abide by federal initiatives. It is right in the act.

Therefore, there is the answer. It has to be a federal initiative in order to do something here, because they will not do it. There is no way the Province of B.C. will change the way they deal with mental health issues for the workers' compensation board or the social welfare system in British Columbia. There is no way that they will do it. No goodwill will prevail.

The Chairman: Thank you, Darrell. I thank you very much for coming to tell us this story.

I should say two things to my colleagues: I first heard about Darrell's story when he wrote me a long letter; and secondly, my office has subsequently had a number of other letters, submissions and phone calls from people who have suffered, effectively, a form of discrimination at the hands of WCBs in various provinces. As a result, at one of our April hearings, we will have a panel consisting of the chairs of three different provincial WCB organizations.

The second issue that Darrell raised is one that has troubled me for a long time with respect to social programs in general, which is the tendency of a provincial government to claw back money that the federal government contributes. It is a reasonable assumption that we will be addressing that issue directly in our report, and also I think it is important for us to note Darrell's point, that in the end, the discriminatory issues need to be handled legislatively at the federal level, as opposed to leaving it up to each individual province.

Thank you very much for coming all this way, Darrell. Finally this morning we have Helen Hook, who is the Coordinator of the Consumer/Survivor Information Resource Centre here in Toronto.

Ms. Helen Hook, Coordinator, Consumer/Survivor Information Resource Centre: Thank you, Mr. Chairman. The Consumer/Survivor Information Resource Centre is just what it sounds like. It is an information centre, a resource centre. We started in 1992. We are peer-oriented, consumer-oriented. The staff, the volunteers and the clients are all people who have had contact with the mental health system and/or the addiction system.

When we started in 1992, we were at PARC, the Parkdale Activity Recreation Centre that was, and still is, the hub of a lot of community activity. We are funded by the Ministry of Health and Long-Term Care. We moved around a little after 1992, but we have been where we are now since 1999. We are on the third floor of a house at 252 College Street. We are there through the generous support of the Community Support Research Unit at CAMH, the Centre for Addiction and Mental Health.

Their generosity means that we are saving $1,100 a month in rent that we used to pay, but it also means that we are on the third floor, so we are not as accessible as before; we are not a street-front, a store-front operation. People who are not able to go up three flights of stairs cannot get to us. We can go down to them and meet at the hospital next door.

We provide peer support, outreach, information and a resource centre. We have films, books and pamphlets. We collect and disseminate information. We put out a bulletin twice a month, that is, this newsletter, and I like to think we can take some credit for you receiving 500-plus responses, because in our December 1 bulletin, we put out the press release that the Kirby commission was looking for feedback, and people were calling saying, “How do I get it? How do I get it? I am not on the Internet. How do I get it?” We actually included it in the December 15 bulletin. We took a couple of pages of our 10-page bulletin and said, “If you cannot get on the Internet, here it is,” and the most recent one, for February 15, actually contains the schedule.

The Chairman: Thank you.

Ms. Hook: Here is our little pamphlet.

I am afraid I will be one of those repetitive, annoying speakers who say some of what you have heard before. I know that it is important and bears repetition, and I know that you will forgive me, because having read the reports that came out in November, I also know that a lot of it is pretty close to your hearts.

I was not around during your first round of hearings. I was at home. I was home for three and a half years with depression. I only left my house to visit doctors and psychiatrists. I was home with no income at all, living on the support of my long-term partner. I was a textbook case, right out of your reports. I was depressed, got sad, got angry and quit my job — no EI.

This had happened to me once before, in 1994, and I appealed to EI. I did not get anywhere. They even phoned my workplace, my former employer, and said, “She says she was depressed. Is that true?” “She did not tell us anything about being depressed,” so my appeal was denied.

Therefore, I had not worked for three and a half years. I am working now. I have been working since October 2004, for just over four months, and I just wanted to remind you, going back to your reports, that the Ontario Medical Association was quoted in section 6.1 as saying that when somebody has been out of work and on disability for six months, there is a 50 per cent chance of them returning to work; when it is one year, there is a 20 per cent chance of them returning to work; and when it is two years, there is a 10 per cent chance of them returning to work. I, and a lot of the people I see who come to the centre or who call, have been off work for a long time or a short time.

I want to tell you a little about why peer support in a back-to-work program is important, and I tend to talk in anecdotes, not statistics, like some of the colleagues that you will hear today or that you have heard already; I tell little stories.

I knew that I could not go back to work on my own. This had happened to me three times before, and I dusted myself off, got myself together, looked in the paper, found a job and went back to work, but I knew it was not going to work for me this time. I looked around for a program and was placed in a back-to-work adjustment program. It sort of worked at first, and then it stopped working, and in fact started to make me feel worse, because I was there for a long time and not doing anything more important at the end of it than at the beginning. It was not developmental.

After I had been there a little less than a year, Diana Capponi became the Client Employment Coordinator at CAMH, the Centre for Addiction and Mental Health. I was on holiday in Hawaii when she first started, so I met with her in May, just short of a year into the program, where I had been for three half-days a week. That meeting with her, instead of my official vocational counsellor, started to change my life.

She got me involved right away with a peer support group, with the client employment work group at the hospital, a group of about 25 people who were mostly professionals, and some clients, whose whole purpose is to try to get clients work. She thought that I was important enough to be there and had something to contribute, and that made me feel really good.

This job-seekers support group that she started meets monthly, and you can talk freely there. You can raise an issue and get feedback from multiple sources, the participants, and it is understood there that we are peers; we can accept or reject the feedback from our colleagues because we are equals.

I contrast this with an experience I had with a health professional, my vocational counsellor in my back-to-work adjustment program. I had been in the same voluntary position, as I said, for more than a year, three half-days a week, and I had originally felt satisfied with my placement, as I was getting a lot out of it and the department was getting some valuable assistance from me. Later, I was starting to feel not good because I was not getting to do anything.

Now, it was complicated by the fact that there is a union at the hospital and I was in public affairs, and they could not give me any union work. I was frustrated, and I told my vocational counsellor about my frustration and that I felt they were giving me make-work to do, that there was no developmental progress. I had been an executive director of a small agency previously, I had been a director of marketing at a magazine, and I was frustrated with the level of work, and her response was that it was probably the negativity of my psychiatric condition that was speaking. I felt unheard, unsupported, and that everything was being blamed on my illness and my diagnosis.

It is very hard to ignore this type of feedback or to put it aside as just one person's opinion when it comes from a health professional, and it is really hard to stand up in the face of authority and say, “I want more,” particularly when it is a woman, particularly because you are a mental patient and the nature of depression is you have no self-esteem, you do not feel worth it, et cetera. It is only one example of the many reasons why peer-led programs are so important.

First, the peer program for back-to-work support probably would not have placed people in the same agency or department for such long periods of time, but I have now, since I became the coordinator at the info centre, run into many people who have been in the same placement for years. This is supposed to be a program that helps them get back to work. Second, someone in the peer group would have given me support in asking for new or challenging or different work; and three, the comments that were not supportive would not have been so devastating because they would have just been coming from a peer.

Also, the opportunity for networking that comes from a peer group and the role modelling that goes on are important. There are now about 20 people going to those meetings that Diana holds, and two or three of us still go even though we have jobs because we can help the other people.

A person who was there at the last one was talking about how important it was to put down every skill you have on your resume, and she tossed off this flippant comment about how she once got a job based on the fact that she put that she knew Maximizer on her resume. She was told that, “You have got this job because you are the only one and we use this program.” Well, wouldn’t you know, two weeks ago, somebody called me, saying, “I need somebody who knows Maximizer to teach it to my staff.” I put them in touch and now she has some contract work, helping to train the staff of this little agency on Maximizer, and I wanted to remind you that peer support should be built into everything. I want to remind you of that international slogan, “Nothing about us without us.”

Employment training supports have to have consumer input built into the design, and I want to tell you about a program, and I do not want to use the name — even though I really do — but it is in Etobicoke. It is a workplace training program in Etobicoke. We do not have bus tickets to get to Etobicoke. We do not want to go to Etobicoke. If consumers/survivors had their way, it would not be in Etobicoke, by Sherway Gardens. It would be downtown, where we are.

It runs from 8:00 to 3:00. Lots of us have problems with drugs. We have insomnia or we take drugs that leave us groggy in the morning. We do not get up. I do not want to generalize. Some of us do get up — I get up — but lots of us have problems with medications and mornings are not a good time. If we were designing it, it would start later and finish later, but the staff members for that program live out of town and they want to leave early, before the rush hour. That is a program that is designed around the staff needs, not the client needs.

The attitudes of some mental health workers keep us down — the diminished expectations. People keep telling us to get a little job. My own vocational worker said, “Get a little job so that it is not too stressful for you, Helen.”

The part-time assistant at the info centre is on maternity leave and I was trying to hire somebody to replace her. Other vocational programs sent the resumes of a national sales manager and a computer whiz to do part-time administrative work in a little one-and-a-half person office.

The same kinds of things have been said about mental health workers, this attitude that some of them have of the “us” and the “other” — even the people who are supposed to be on our side. Three of us were standing together at a conference, and there were a lot of union members there who, because of their own union agenda, tried to make mental patients sound even worse. They want more money, more danger pay, so they try to make us sound worse, inpatients especially, so that they get more pay, more staff on each shift, shorter shifts and longer breaks, et cetera. That is a problem.

At this same conference, three of us were standing together talking about the negative stereotypes around, such as, if you hire consumer/survivors, they will only be absent all the time, because everybody knows they will just get sick and stay off work. We were talking about how that is not true, that when finally somebody gives us a chance at a job, we just work like crazy and try so hard. This person who is supposed to be on our side says, “They do not even get the flu like the rest of us,” and mental patients are there. They do not get the flu.

The same sort of thing happens when we talk about clients in the workplace. The client calls and says, “I have to make sure that when I get a job, it is within my disability and the kind of job that will not make me sick.”

I see the stigma and discrimination, so my recommendation for the national inclusiveness campaign that you have talked about is it has to be also within the mental health system, within the health system in general. You have talked about an inclusiveness campaign that the federal government can promote and I am just adding my two cents' worth. Employment, small business, is federal, so you can have a big impact there. You can create incentives for the businesses, like OCAB, and alternative businesses. Industry and HRSDC are federal departments. You can make that happen.

Mental patients are all of us, you know. We are you. It is similar, I think, to the lesbian and gay scene a few years ago. We are everywhere, but people do not necessarily realize it. It is like the “coming out” issue in some cases; 10, 20 years ago, people did not even realize they knew a lesbian or a gay. “Well, I do not know any. I am sure they are fine, but I do not know any.” It is the same thing at work, at home, with your neighbours, your nieces, nephews and children — you know. You all do, we all do, and when it is safer to come out, you will be surprised at how many you do know.

The Chairman: Thank you, Ms. Hook, and thanks to all of you for your comments. We have time for a couple of questions, but let me just make one observation.

I think when we began this work — let me speak for myself — certainly, when I began this work, while I fully understood the extent of stigma and discrimination in the community at large, I was under the naive assumption that people in government, whether in agencies that paid money or that offered services, and people in general, if they were in for-profit or not-for-profit organizations providing service to the mentally ill, did not hold the same kind of discriminatory attitudes that I felt were pretty rampant in the public at large. The striking comment from the four of you this morning is that — and I say this with great regret — discrimination is alive and well among precisely the group of people who are providing services, and that has to be about as discouraging a situation, from your point of view, as I can imagine. I thank all of you very much for giving us that information.

Senator Keon: First, let me acknowledge what a tremendous presentation this was collectively, just looking at the issues that you have covered, including full integration, as Diana said, or alternative businesses. You touched on the federal workplace and problems there, the fact that there is no after-care when you leave an institution and you fall off a cliff. You spoke of stigmatization, traumatization, and the need for peer groups and for programs to meet the client needs rather than the staff needs.

I cannot ask questions on all of that or we would be here all day, so I will turn to you, Diana, since you were first. This is not discrimination, okay? I was very interested in your concept of full integration, which, by the way, we are all grappling with and trying to find a way to describe such a program.

The problem is so many components are missing at the present, and certainly the institutional sector cannot provide the care that people need. People need care in the community, as Ms. Hook said, not 30 miles, 40 miles out of town somewhere; and people need, as far as I can tell, community resources as well as professional health resources and some kind of integration of those.

Perhaps, Diana, you could talk about how, if you were queen of the world, you would design a system that integrates the institutional sector, the community sector, the primary health care sector and all the other components that one can think of. Would you like to expand on that?

Ms. Diana Capponi: A lot of people refer to me as “the queen.”

I go back to some of the basics. Full integration buys respect, understanding, consideration, and I think some of our society's attitudes are so ingrained as a result of years and years of mental illness, mental health, being under the covers, that both institutional staff and inpatients suffer from some element of institutionalization.

Mental health is not on the agenda and is not talked about. It still remains one of those taboo subjects, and I feel in order for people to fully integrate into our society, we all have to acknowledge our own elements of mental “mal-health,” so to speak.

If we look at the correctional system, for example, we talk a lot about the revolving door syndrome. Let me tell you, no doors revolve more or faster than those in the mental health system. There are no exits in that system, and I think that points out that the social determinants of health, which are critical for all of us, need to be addressed. People with mental health issues or addiction issues, or whatever the issues are, are very much you and I. The number is 1 out of 4 or 1 out of 5 or 1 out of 12. If you do the math in a room of this size, you will see how many of us exist.

However, 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.

Ms. Pat Capponi: We were so impressed by the fact that you people were not wearing Kevlar vests today — really.

Ms. Diana Capponi: The Government of Canada used to have ParticipACTION and all these other programs that were designed to educate people about the benefits of good health — blah, blah, blah. We never talked about mental health and how to maintain good mental health. It seemed that mental health was only relevant to those people deemed mentally ill, and I think we are seeing more and more in today's society people falling through the cracks, more people becoming ill, and unfortunately, there is no safe place to talk about this.

I spend my days trying to get people with mental health and addiction issues work within the institutional sector, within the Centre for Addiction and Mental Health, and I applaud them for funding my position and trying to make this happen. On the other hand, I know it will not be successful until the people there can respect, understand and celebrate people's differences rather than label them.

As the queen, until people are enlightened, until people have a good understanding, and until drug companies, for example, stop making their millions of dollars of profits off people's backs, I do not believe there will be a lot of change. Thanks.

Senator Trenholme Counsell: Thank you very much to our very special presenters this morning. It has been an important panel and I certainly have learned a lot. Of course, I have been touched by what you have said.

There are two things I wanted to bring up. One is the use of the word “chronic.” In the medical field, we do say “acute” and “chronic.” “Chronic” applies to diabetes mellitus, osteoarthritis, a thousand things, and it does not need to have a stigma attached to it.

That is something we really have to think about. “Acute” is if you have a cold or urinary tract infection or cut your finger or whatever, but you have challenged us to think about that, and I can see how in the case of mental illness, it has a bigger overlay.

I was in government for quite a long time, and in my province, which is New Brunswick, we were moving away from the sheltered workshops. Now I am not as current as I should be, although I believe that the effort is still made to find employment whenever possible, to strive to find it, create it, encourage it, et cetera, in the workplace. I will not say the “regular” workplace, just in the workplace, be it at Wal-Mart, a government office or somebody's private business.

I would like to have a little more discussion of that, and especially the peer-led programs. That really impressed me, Ms. Hook, and I wrote down a list of things that peer-led programs can do. I can almost see that as an educational opportunity. Networking, role modelling opportunities, resume preparation are very good, but in terms of the workplace, could we have a little more discussion about that?

Ms. Hook: Diana is the expert on it.

Ms. Diana Capponi: Not true. In fact, I am aware of some initiatives in New Brunswick. When I was with the Ontario Council of Alternative Businesses, we worked closely with a group of providers in Moncton, I believe, who were trying to develop a catering business as a way to provide some work opportunities for people.

As for the word “chronic,” what it really means is difficult or non-compliant or hopeless. That is how, within the mental health care system, the word is defined, and if you believe people are hopeless and difficult and non-compliant, will you see them as individuals with potential?

It is very difficult to use the word “chronic” and see potential. It is almost impossible to achieve. I have spent years working with people on employment and I am consistently flabbergasted by the lack of expectations or the limitations that we put on others. I am so proud of people like Helen Hook, of the people in New Brunswick who have started their own catering company, of the almost 1,100 people working in this province every day, demonstrating that they might be crazy as hell, but they can provide a service that the public will pay for, and I see that potential in people.

However, many of the services designed to assist people with employment — for many people the first time they ever got paid for doing a job — do not see the potential. They do not see that we benefit from carrots, too. We like a paycheque, we like an identity other than mental patient, schizophrenic, or whatever the label is at the time.

The alternative businesses do not exist anywhere else in the world. They only exist here in Ontario, and I have to tell you the reason is Ontario had a very strong psychiatric survivor movement that began by saying, “We want a voice. Listen to us,” and then, “We want a piece of the economic pie.”

That has been a 25-year history, and we still have a lot more work to do, but I implore this committee to please address employment. It is the only way the community can help themselves. As long as we are poor, we will be dependent.

Senator Trenholme Counsell: You repeated the word “alternative.” Would you agree that the ideal goal is employment in the same kinds of places where all of our citizens work?

Ms. Diana Capponi: Absolutely.

Senator Trenholme Counsell: I do not know how to put that.

Ms. Diana Capponi: However, “alternative” means that these are businesses run by and for the people who work there, and for someone who has been institutionalized, has had no work history whatsoever as an adult, has maybe been in a sheltered workshop, where you learn what you cannot do, these businesses work very well in providing on-the-job skills training, in giving people income and, most importantly, a sense of pride.

Ms. Hook: The types of business that belong to OCAB are limited by lack of capital, so, for example, there are restaurants. There is Crazy Cooks Catering in Peterborough; there is a restaurant called Raging Spoon in Toronto; Ten Friends Diner in Windsor; and Out of This World Café in Toronto, which is a success story all in itself, because it is a vocational rehab program that was divested from the control of the hospital to a survivor-run business that still remains in the hospital. There is also an old-fashioned coffee cart that goes up and down the halls the way it used to happen in the '40s, '50s and '60s. There are two gardening-type businesses and a cleaning business.

People come to me and say, “Why can we not start a car wash or something?” Well, because you have to have a million dollars for that equipment. Therefore, perhaps that is another way that the federal government could get involved, through a capitalization program.

The Chairman: By the way, I should have pointed out, as it is interesting, that we have a fair amount of medical expertise on this panel. As many of you know, Senator Keon was a cardiac surgeon, Senator Trenholme Counsell was a family practitioner in rural New Brunswick for many years, and Senator Pepin is a nurse — and I do not know anything about health.

Senator Pepin: Bonjour. I have to admit I am very impressed by your presentation and very moved also. As Senator Kirby mentioned, some of us have family members who are suffering from mental health problems, and I am one of them.

After hearing you speak about discrimination, I believe that one of the major obstacles you face is the stigmatization, and one of the first things we should do is to tackle the question of discrimination.

Do you think it would be best to have a national plan, or do you believe we should have a specific strategy adapted to different forms of mental health? Do you believe that we have to work against discrimination first, or we should have a specific strategy to fight different forms of mental health issues? What would be the best thing to start with?

Ms. Pat Capponi: If I may, Ontario funded a leadership development program for four years, but part of what we found is, because the discrimination within the system was so rampant, we had to work with staff in parallel to that process to sensitize them to our issues, to deal with some of their discriminatory attitudes and get them to look inside. It is difficult when the system keeps looking outward instead of inward.

You could kill two birds with one stone and employ survivors to work on a national strategy to address the discrimination within the system. It has often been said that the best anti-stigma campaign is one of the A-Way couriers walking into a Bay Street building to deliver a package. We waste millions of dollars funding agencies to hire advertising firms when it is something we could do, and have done, and we are good at it.

Senator Pepin: Mr. Powell, you mentioned “rainy day syndrome,” and you said — I want to be sure I understood — that if you have been working, and someone finds out that you had a previous, let us say, consultation with a psychiatrist or a psychologist and maybe you had a depression, you will not get your pension? Explain that to me.

Mr. Powell: Okay. The way that it works is there are approximately 30,000 permanently injured pensioners like me in B.C.— and it is probably very similar, probably more, in Ontario — who will intertwine with government and the medical services in the community, and the establishment of chronic pain is an element of your pension. That is what requires the assessment.

I have found some controversy about doing these assessments to begin with, and as I was mentioning, I think the Canadian military did one of soldiers returning from Europe, where going through the PTSD assessment was actually increasing the injury and causing more damage; but then, of course, they do not compensate you for going through the process.

Senator Pepin: No.

Mr. Powell: I hope that helps a little.

Senator Pepin: Okay, because I want to be sure that I understood, that if someone said that, let us say, he was seeing a psychiatrist, he was mentally ill for a while, he has a harder time getting his retirement pension than someone else.

Mr. Powell: Oh, absolutely.

Ms. Diana Capponi: They can also say it is a pre-existing condition. “You saw a shrink 20 years ago. You were depressed then. It did not happen in our workplace.”

Mr. Powell: It is a way of eliminating or limiting the claims, and it can amount to a substantial portion of someone’s life when dealing with a disability from an injury.

Senator Pepin: A pre-existing condition.

Mr. Powell: Yes.

Ms. Diana Capponi: If I could just add, I have a document that was written as a result of a coroner's inquest in B.C. about a man who was shot by police at a hospital after he had been fighting with insurance boards for a period of three years. That is where this report comes from.

Senator Pepin: Ms. Hook, I liked your statement that a program should be organized around the client instead of the personnel. I think that is quite interesting and will help us a lot. Merci beaucoup.

The Chairman: May I thank all of you for coming. Thank you for making the time to be with us today.

Ms. Hook: Clients are thrilled that you are writing back to them if they sent in a survey.

The Chairman: Thank you, because we did try to reply, in every case where we had an email address or whatever.

Our next two witnesses, both as individuals with stories to tell, are Norrah Whitney and Carolyn Mayeur, They will tell us a story of their own personal family experience with the mental health system, and then we will turn to questions.

Thank you both for coming.

Ms. Norrah Whitney, As an individual: Thank you. I have prepared a statement and I am going to read a little of it. It is easier for me.

My name is Norrah Whitney and I am Executive Director of Families for Early Autism Treatment of Ontario. I am also the parent of a child who suffers from autism. FEAT of Ontario is partnered with some of the best research organizations in the world, and we also have people from Health Canada on our advisory board, including Dr. Ofner, who was a recent champion during the SARS crisis. We do not receive any government funding, and therefore it is from an uncompromised position that I present this today.

Autism is a serious medical condition with no home. Effective science-based treatment is not part of any provincial health care scheme. It stands alone as the only core health deficit suffered by Canadians to which no effective treatment is provided by the respective medicare plans. What is beyond debate is that autism can no longer afford to have the ostrich bury its head, hoping that when it emerges, the crisis will have disappeared. If we continue to engage in this type of behaviour as a responsible society, any type of damage control in the future will be futile.

In the words of David Suzuki:

Somehow, we have to find the money to help children with autism...If we don't, the cost to all of us caring for an untreated adult will be far greater, reaching into the millions. The cost in terms of human suffering is not to be measured.

Without effective treatment, autism is a lifelong disorder that results in the placing of over 90 per cent of untreated children in group homes and residential facilities. Only 1 in 64 children will improve without treatment. It is more common now than childhood leukemia, HIV, cystic fibrosis, cerebral palsy and Down’s syndrome, and yet it remains one of the least funded medical ailments, outside the health care system, a nomad with catastrophic consequences to innocent children whose only mistake was their particular inheritance of disease.

Legislation exists, so what has gone wrong? As a last resort, to seek equal access to effective treatment for their core health needs, children with autism have had to turn to courtrooms across this country. How can one rationalize denying them the only effective treatment for one of the most serious neurological illnesses known to man when mildly depressed individuals have their core health needs covered? Such decisions, which shock the conscience, rarely run parallel to fundamental justice.

Human rights law and the respective human rights codes, and federal law such as the highly touted Convention on the Rights of the Child, ratified by Canada, have not to date fulfilled their intent, to protect the most vulnerable in society.

Providing effective autism treatment is completely consistent with the principles of the Canada Health Act — to promote and restore the well-being of Canadians. The WHO report on mental illness echoes the CHA's principles and provisions, including the right to rehabilitation and treatment that enhances autonomy. It says:

The declaration recognizes a right of each person to the medical care, therapy, education and training as will enable him to develop his ability and maximum potential, to care and treatment in accordance with the same standards as other ill persons...

The Convention on the Rights of the Child, ratified by Canada, makes specific provision for the protection and well-being of children and, in particular, the disabled child. The Canadian Charter of Rights and Freedoms is Trudeau's legacy to this nation and a beacon of human rights legislation to other countries. On the surface, it appears to have the teeth necessary to protect equal rights.

Paul Martin said in his reply to the throne speech:

Let us understand that within the Charter of Rights are enshrined our basic freedoms, and we as a nation of minorities must never allow these fundamental rights to be compromised if we are to protect our national character and individual freedom.

Yet despite the aforementioned legislation and the Prime Minister's inspiring words, inclusion in the same benefit afforded other Canadians, the public health care system, for autism has remained elusive. How could this have happened?

Attitudinal discrimination — are its roots found in government? Paul Martin said:

You can't pick and choose minority rights, or the fundamental rights, that you are going to defend. You're going to defend all rights. I defend the Charter.

Picking and choosing, and discriminating, is exactly what Mr. Martin and Minister of Justice Irwin Cotler did last year when the federal government intervened against disabled children in the Supreme Court of Canada's hearing of the Auton case, in which several families were seeking to have their autistic children's core health needs brought under the umbrella of the Canada health care system.

Although the families had won in the lower courts, the government side won in the Supreme Court in November, and the equality rights of the Charter were effectively gutted. Since then, Minister Dosanjh has made not a single effort to extend medicare to autistic children. These actions are strikingly contradictory to the government proclamation in the address by the Prime Minister in his reply to the throne speech, when he asked rhetorically, “What do we want as a country?” He said:

A Canada where no individual, no community, no region is denied the opportunity to fully participate in the building of an even greater nation. This agenda is ambitious, but Canadians expect no less of themselves, and should expect no less of their government...

He went on to say:

We are committed irrevocably to the principles of the Canada Health Act. They are part of who we are and a moral statement about fundamental fairness — that all Canadians should stand equal before our health care system.

As the Honourable Madam Justice Allan said in the Auton case:

Autism is the disorder or illness that requires treatment. It is of little assistance to reassure people suffering from debilitating illnesses that although the state will not provide treatment for that illness, should they break a leg or develop pneumonia, they will be treated for those conditions.

One of your own colleagues, Senator Jim Munson, accurately paraphrased the horror experienced by autistic children and their families. He talked about treatment for autism being similar to that for people who were suffering from brain injuries. He said it is an effective treatment, but it is very expensive. He said that in fact it is so expensive that it is beyond the reach of most families.

And I tell you that we are suffering. As a single mother, I have raised a quarter of a million dollars for my son's health care treatment. Senator Munson said:

Is this the face of Canada's universal health care system? Honourable senators, I am afraid it is. Yet the cost of not treating autism is much higher. Children who do not receive treatment often grow up to become wholly dependent on the state for support. This support is estimated at $2 million over the lifetime of the individual.

Most importantly, he said:

You see, apart from being immoral, denying coverage is a false economy. The issue is universality, and the people affected are our most vulnerable citizens. They are being denied treatment that is proven to work. We need a vision. There must be a national will and, with that, a national autism program.

I am here today to say that I could not agree more with Senator Munson, but who will bring about this national vision when governments illogically and immorally defy the human rights principles they claim define themselves and this nation?

Senator Pearson, who oversees the Convention on the Rights of the Child designed to prevent this very catastrophe before you today, could not see her way to intervening for these silent voices. UNICEF Canada, despite their mandate, would do nothing to champion these children. You must be their voice, their champions, and the legislation I will discuss now is how we can bring Senator Munson's vision to fruition.

We need a national strategy to ensure equal rights for Canadians with disabilities. The Auton ruling, handed down by the Supreme Court of Canada in November, has turned back the clock on disability rights in Canada. This has happened not only for children with autism, who have been ruled by the high court as ineligible for inclusion in medicare for their core health needs, but for also every disabled person across this country. Their rights have been also thoroughly abrogated by the Auton judgment.

Mary Eberts, who helped define and develop the Charter of Rights and Freedoms, a lawyer in Toronto, said:

This Supreme Court of Canada has effectively given away the store. I think they have torn the guts out of Canada's Charter of Rights and Freedoms.

This brief sets out what must be done to make Canada a leader in disability rights and a country with meaningful legal protections for persons with disability.

We need to turn Canada into a nation where we actually value rather than simply tolerate people with disabilities. We need three new pieces of legislation.

The first is a Canadians with disabilities act, a CDA; we need a mental health parity act, and we need a federal individuals with disability education act. Federal laws such as these are what make the United States a remarkably better place for people with disabilities to live than Canada. In the U.S., equality in services, jobs and housing for people with autism and other disabilities is not optional. It is the law.

The first piece of suggested legislation, the CDA, is a broad disabilities rights act, whereby people with all disabilities could be protected. This act would be relatively quick to enact in Canada, since it applies to all disabled people and would likely be endorsed by a coalition of disabled persons across this country. CDA is very much in the best interests of every person with a disability.

The second piece is a mental health parity act. It would be less broadly based, but it is very important for Canada. The MHPA would make it illegal for health insurance companies to discriminate by refusing coverage for treatments for mental illness or mental disability. In the U.S., over 26 MHPAs have been ratified. In 1996, the U.S. Congress passed a federal Mental Health Parity Act. This kind of vitally important legislation for autism equality may well face resistance in Canada because the health insurance companies that would be affected by such an equality law are the provincial government agencies. In other words, by design, medicare is a government-owned and operated health insurance monopoly in every province that fights tenaciously to keep children with autism out of our health care system. However, this is still worth pursuing.

The last piece of U.S. legislation is the Individuals with Disabilities Education Act. This act refers to children in the education system. Under this important disability legislation, many thousands of children with autism have had their medically necessary autism programs paid for by the educational system when they reached school age, and although education falls under the provincial realm in Canada, this is still an absolutely necessary piece of federal legislation so that children with autism can receive their treatment, just as other children with other medical disabilities do, while they attend public school.

We also need to establish academic chairs for medically necessary autism treatment in every province. We have research chairs, but we do not have any that actually help promote more professionals entering the field.

We need an independent inquiry into the judicial process. Although the Auton case is over and nothing can be done formally to reverse the profound miscarriage of justice, we must look at the decision. There are 22 technical errors in the high court's ruling, and we will make those errors public soon. Although this kind of inquiry may not help children with autism directly, it will shine a necessary spotlight on possible government impropriety in the Auton case, political meddling and rule breaking that affected a purportedly independent judicial process, which is so critical to a free and democratic society.

Why is taking on the autism issue and disability rights such a good cause for political leaders? Why should we be paying attention to this today? Let me tell you why.

After the Supreme Court handed down its ruling, we went to Ipsos-Reid and asked them to conduct a survey for us. Canadians were asked, “Even in light of the Supreme Court ruling, do you believe that children with autism should be part of the medicare system?” I will tell you that 89 per cent, a majority of Canadians — 91 per cent in Ontario, Senator Keon — said yes. That is the will of the Canadian people. Those are the taxpayers who do not want to pay the institutionalization costs of these children and who do not want to see Canada, one of the richest nations in this world, turn its back on innocent children.

The chamber of sober second thought, the last hope for children with autism: The purpose of the Senate was said to be to act as a chamber of sober second thought. I am absolutely convinced that the only chance children with autism have is sitting before me today. The idea of a child's life wasted, destroyed, merely because of systemic attitudinal discrimination rooted deeply behind government walls and policy is, beyond doubt, a most sobering reality. These citizens have nowhere left to turn, no current laws to protect them, no humanitarian agency to defend them. Who then but you do they have to cry out to, our chamber of sober second thought?

Our government has said our goal in this Parliament, in all pursuits, must be to ensure that future generation of Canadians have every reason to feel the same way about their country as we do, to experience that surge of pride, that jolt of confidence, that intangible and unmistakable feeling that we are all part of something special. Children with autism are not part of something special. Their treatment can only be paralleled with that of Japanese Canadians during World War II, who were rounded up and placed in internment camps. Institutions, if you want to call them that.

If we complacently allow government and society to treat children with autism as second-class citizens, then we massacre the vision of Canada, the legacy left by one of this country's greatest leaders, Pierre Elliott Trudeau. His vision of Canada died the day those tiny disabled feet pattered into the Supreme Court of Canada, only to be impaled by both provincial and federal legal armies determined to defeat their equality rights.

Society should be judged by how it treats those who need help, and on this score, sadly, I must say Canada fails miserably. You must in your sober capacity bring in new legislation, so this black mark on the social fabric of this nation never occurs again. You have the power to save these lives.

The Kirby report is a strong indication of your will and purpose, a big first step in the protection of the disabled. I ask you now to take the second: Go back to Ottawa and ensure that children with autism will belong to Trudeau's vision of Canada, so that they too can be proud to be an equal part of this nation. Once the necessary federal legislation is in place, then we can discuss solutions to the regulation of autism treatment in an effective and prudent manner.

The vision of Sir John Leo Whitney, founding father of Ontario's Hospital Insurance Plan, died too. His vision was to create a sustainable health care system based on need, and not ability to pay. I implore you, for the future of my son, Lucas, resurrect my grandfather's legacy to this province through new federal legislation and strong moral decision, so that my son and others like him are not barred from it. Thank you.

The Chairman: Thank you, Norrah, and next, we have a presentation from Carolyn Mayeur. You have the text with you.

Ms. Carolyn Mayeur, As an individual: Yes, you do, although I deviated from that text, I have to warn you. I did set out a few pictures, if you will circulate them, because my daughter wanted to tell her story and to put a human face to this illness, which is treated as invisible, which is really the leprosy of our mental health illnesses, one of the few areas where the victim is still totally blamed for a physical and mental illness.

Thank you for allowing me to return to this committee. This is the biggest ray of hope that I have seen in well over a dozen years. 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.

If you are a young woman in Canada, you are 12 times more likely to die of an eating disorder than all other illnesses combined. We have 65,000 AIDS patients in Ontario. It is estimated, between those who seek help and those who hide in their houses, that there are as many as 140,000 eating-disordered patients in Ontario, and I get to talk to a lot of them in my advocacy work, people who have lived to 90 years struggling with this, just above the death line — 65 years.

For those who are untreated, 33 per cent at least, this becomes a chronic illness. For those who survive it, 33 per cent learn how to manage it so that they can live a life, and 20 per cent of anorexics do not make it.

I mention those numbers because in our province, we allocate a total of $7.7 million for well over 20 centres across Ontario. After you try to pay the secretarial and business costs, et cetera, you can imagine what that leaves for the care of our people.

In our central-west eating-disorder treatment area, which includes Kitchener, Cambridge, Guelph, all of Halton, all of Peel, all of Dufferin, Brampton, our total budget is $1.3 million for six centres. We cannot offer a single day program. We cannot offer a single bed, and Homewood, which is in the area, has now gone to private beds. Toronto General is cutting back, and in Hamilton, where some of our people from Burlington flee, their funding is precarious as well.

This is an epidemic that is not being addressed. There should be a strategy coming from many directions. These are our young people. That is where it first presents. We are seeing kids as young as seven years old, boys, with full-blown anorexia.

Part of the problem is that it has not been declared a disease, yet it is a mental and a physical illness. Doctors have trouble trying to decide which it is, and so nobody is doing much of anything about either aspect of it. Yet research, including the international genetic study of siblings, in which my family participated, is showing more and more that there is a strong genetic component to this disease. There are three short genes that indicate a predisposition to loss of appetite, sense of self, sleep, thirst, some of the indicators of this illness, and that there is also a chemical imbalance at play, about which not too much is known because, of course, despite the numbers being touched by the disease, there is precious little research, so I really would plead for equity of research in these underserved areas. These are our young people, after all.

Hospitals do not have allocated critical care beds for this illness, so they go to great lengths to not take anybody on. Danielle presented three times, at 69 pounds, at 76 pounds, and the admitting doctor did a blood test, said her potassium level was fine — translation, her heart is not going to stop within the next five minutes — so she was medically fine and there was no reason to have her in the hospital. I am sitting there thinking, yes, and every part of her body is shrinking, every organ, every muscle, bones, the brain — all of it. The brain is 60 per cent fat. As you can imagine, if you are eating your body, you are also damaging your brain.

This is a life-threatening illness. One problem we have in central-west is that we cannot get doctors to do the physical medical assessment at our six clinics. We cannot get them to come to local hospitals. I do not know whether it is the pay scale or what, but when you have a child who is severely ill and you cannot even get a physical assessment, it is very frustrating.

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. The brain is co-opted by something like a computer virus that keeps sending out the same message in a stronger voice, and there is a huge internal struggle to assert a voice that is saner. Every bite, every step, was a genuine struggle for her.

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. Never mind that her body was old, dying and worn out. She did not qualify. 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 that had all withered so much that she had no range of motion.

Danielle put herself on a wait list immediately, because when a patient presents, the best-practice wait time is one month for assessment and then a month later to begin treatment. She was on that wait list for three years — three years for that virus to spread through her whole memory field, to co-opt every current experience, to become more entrenched.

There should be communities of care for these illnesses. They need to be treated differently. These people really need support to stay motivated, to be courageous and to retrain the thinking process; and in Danielle's case, to deal with the fact that she had been raped in that group home and that is why she could not face eating and plummeted so rapidly. However, there was no treatment for stress syndrome.

We finally paid $2,400 to a rape therapist after Danielle told us two-and-a-half years later about this trauma that had so trashed her soul; and while I am at it, I just want to say, for the 50 per cent of severe anorexics who are victims of incest or sexual attack or violence within the home, if you can, change the laws around sexual crimes. This is not social misconduct. This is a destruction of the personality and soul, and people should not be free, after three months or three years, to walk out and do it again. It is the same as murder, and the laws and the penalties should reflect that.

In any event, Danielle needed comprehensive treatment. By the time she finally got into the program, they said, “You have post-traumatic stress disorder, you have severe obsessive/compulsive disorder, you have...” and gave her a list of things that could have been treated three years earlier, but they only had a three-month, one-size-fits-all program.

Every eating-disorder victim gets into a complex situation involving different factors that all hit together and treatment has to be individualized. Would you let a cancer spread for three years and then say to the patient, “Okay, now everybody gets the exact same chemotherapy treatment for three months, and then you are sent home; if you relapse, you did not have the right attitude”? That is what is happening. That is what happened to Danielle.

Now, bulimics often survive much better in group treatment, but anorexics, severe anorexics, need an individualized, intensive treatment plan. For some of them, this complicated illness requires many months of complicated care, and the system should allow for the personnel to treat them.

There should be, until there is some continuity in the system, a case worker. I spent hundreds of hours on the phone, waiting on hold, then being cut off, waiting on hold again, eventually connecting, calling every ministry to find out what services there were. There were none.

Hopefully, there are some now, but with Toronto General cutting back, they had the glib nerve to say that this will be picked up within the community. I am sorry; we do not have support services in our community. Public Health does nothing about this, and our eating disorder support centre can barely manage to keep its therapists and operate the outpatient program that they do. It just amazed me.

I would say that the discrimination, the unwillingness to treat this illness within the complex of all other illnesses, is partly because it is a woman's thing, or it was. We are now finding a lot more male victims. It is partly because it is still viewed as neurotic behaviour, which it is not, and there is a long way to go, even within the psychiatric profession, in terms of how they understand this illness. When the local psych group was given the option of some block funding, they told us that eating disorders were at the bottom of their list when allocating the funds. It is not there.

I am beginning to think that there should be block funding for mental health, separate from other kinds of health, simply because mental health tends always to be under-prioritized. If there were block funding for mental health, I would mandate that currently underserved areas should first be brought up to a position of equity with other areas. Otherwise, you just perpetuate the inequity.

The current evidence-based criteria on which they fund their community program needs really need to be reworked. We know that in cancer and other areas, support programs facilitate recovery, and we know, through the $150,000 study that the ministry did of the programs at Sheena's Place, that there was a high reported improvement in relationships, in ability to cope, and a lot of other factors that keep these victims leading a half-life, sometimes for decades.

Sheena's Place support services are not a frill. They are a necessary component for recovery. Anorexics are really out of touch with their bodies and 90 per cent of their thought time is around, in a loop, food, weight, calories and thinness. Danielle burned herself on a space heater, and it never healed because the body was too busy trying to keep going to do things like healing, but she was oblivious to that. It is rather like Lamaze training, where you focus on something else to distract yourself from pain. When you are that focused, as these people are so intensely, you do not even know you are dying, which was the case with Danielle.

The three-month, one-size-fits-all day program got Danielle fattened up. She kept coming back, saying, “But mom, nobody is helping me with these voices in my head and these thoughts in my mind.” Why? She needed intensive cognitive behavioural help.

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 with 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.” That is what she needed.

To say, in the case of my daughter, and these other daughters — because I meet parents who have lost daughters recently — that it is unrealistic to expect that treatment that has been proven to work will be there, is truly a huge problem.

In addition, do not house these patients on cold, mixed-sex psych wards. Danielle's rape crisis counsellor — I think I told you we paid $2,400 to get this counselling because it is not provided — told us that half of her time was spent dealing with the trauma Danielle experienced during two two-week periods on two different psych wards in our region. I never probed Danielle as to what the trauma was, but these young people should be in a safe place.

The psych ward was a cold place where the nurses all huddled behind glass walls. There was very little interaction with patients, except to administer drugs, and no therapy. She never received any therapy when she was on a psych ward, anything to help her deal with whatever she was dealing with.

I would say that for one-quarter of the bill for a psych ward in a hospital, you could provide residential treatment within the community for these patients, and that might decrease the level of self-loathing that is a peculiarity of this illness and the anxiety that they feel, understandably, on psych wards.

In addition, I think we should look at the entire concept of psych wards. How are we evaluating psych wards? By the number of people they put through? By the number of assessments they do? Danielle had dozens of assessments. What a waste of taxpayers' money. The money could have been better spent on treatment.

I would like to see wards in these areas actually have to conduct anonymous client evaluations at the end of stays, which should be counted too in their performance evaluation. You could ask very simple questions: Were you treated with respect? Were you treated with humanity? Did you have interaction with the staff? Did you receive any therapy? It would be very revealing. She was actually turned away from psych wards twice because the nurse said, “It is not good right now. It is too dangerous on the ward.” Why is that her only option?

Now, when you talk to the ministry this afternoon, I would love you to ask them about what they spent last year to send 30 children to the States for residential treatment. We only allow $7.7 million to treat people in Ontario; we are at the tip of the iceberg. You would be amazed at how many millions go into those 30 people that could better serve hundreds within our own province. They argue, “Well, that comes out of a different pocket.” Excuse me, but it still comes out of the taxpayers' pocket. It is political, but it is not nice.

Schools, too, can play a role. The Robins report had suggested that there be mental health workers in all schools. This was not followed. In fact under the present funding formulas, we have very few guidance counsellors. There are offices. We can put in-house therapists in empty offices in guidance departments in high schools. They would be easier for kids to get to. I believe there should be regular screening for mental health through all the grades. Danielle had a chemical imbalance that started when she was very young, but there was no screening mechanism. We could have maybe prevented a lot of what happened if we had caught it early.

In addition, it would be easier for kids to access help. They are juggling work, what they have to do within the community to earn their credits for that, and a heavy homework load in the compressed curriculum, so having therapists available within the high school has a lot to recommend it.

In addition, high school programs are discriminatory. There should be mandated modifications for those who suffer mood disorders. My son was brilliant — math, computers — but with his depression, he was unable to do the “in front of everybody” presentations that are 20 per cent of the OAC credit. Because he was unable to do two hours of presentations, he could not earn high enough marks to be eligible for university. Ironically, as a teacher myself at the high school level, I have modified programs for elite athletes, for students who were doing acting gigs in the States, but there is no modification for an illness.

Now, what does this mean? His salary, although he has a strong work ethic, is half that of his friends. They are buying houses. He still cannot afford to rent an apartment, and this is going to dog him all his life. It is a huge price to pay for the failure of the education system to recognize that there are times when you cannot do everything the same way.

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. They discounted her because she was shy and quiet, and sent her away three times. 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.

Now, most of the time she phoned me and kept me on the phone for two hours without telling me what it was about. I would say, “I have marking to do.” “Oh, but mom,” and she would redirect the conversation, but when she could not phone me, she went to emergency. There should be a safe place for people who are dealing with suicidal impulses.

We are working on a suicide prevention strategy in Halton because we had 96 cases in four years, but the committee there did not even think about eating disorders, although they kill more than any of the other mental illnesses. These attitudes around eating disorders are so entrenched.

Once, she actually overdosed unintentionally because she was taking the prescribed dosage of these medications, which were too much for her reduced bloodstream, reduced body size. Nobody was doing regular monitoring of her blood levels. Any central mental health facility within a community should have that available for all people who are on medication, so that you do not have these kinds of accidents.

In addition, coroners do not report eating-disordered deaths. They will put it down to liver failure, heart failure or suicide and do not mention the underlying illness. I plead with you, if there is any way you can mandate that coroners have to report the underlying illness and make their findings public, to do so. When I talk, as I do, to groups about prevention, and when I get newspaper articles to try to raise awareness around this, I have statistics that are in your face and real.

Yes, federal disability laws should change. Danielle was ineligible. She could still tie her shoes and feed herself and did not meet some of the limited criteria for disability at the time under the Canada Pension Plan. She could not begin to cover extraneous needs like dental care, like gloves for her hands that were so dry and cracked and bleeding for the last three years.

Perhaps necessary drugs for illnesses like this should be provided federally for those at lower income levels and not tied to whether or not you are on welfare. I know people who cannot get off Ontario welfare because they cannot afford to pick up their own medical costs, even if they could work. There is something wrong with that picture. Clinically, her osteoporosis was off the chart, and she could not get medicine for it.

Pension issues also need to be addressed. Actually, all three of us in our family have developed chronic illnesses because of the eight years of stress from 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.

I remember asking the psychiatrist on one of our many trips to the psych ward, “Can we not get her to the Clark for an assessment so we can get her on the right medication?” He just laughed at me. He said, “What do you think the Clark will do for you?” Well, that shut us up, but six-and-a-half years into her illness, she found a wonderful therapist who was connected with the Clark and got her in there. They tried a regimen of different medications, and for a year and a half, she was not depressed, she was not suicidal. Her body was dying, but she was forming goals and enjoying a lot more of her life.

I developed severe fibromyalgia and ended up having to quit early and take a reduced pension. I am grateful now, in one sense, because I was able to spend the last three years with Danielle, and there was a lot of joy to be had in those years, despite her illness.

To sum up, for all those families who might still have a future with their children who are eating disordered, I hope that any implementation plan will address the internal, systemic discrimination against this illness, the one mental illness for which the victim and the family are still blamed and the real treatment needs and suffering of these patients ignored.

The Chairman: Thank you, Ms. Mayeur. Finally, we have Betty Miller, who is the coordinator of a family council that was established to be the voice of family members.

Ms. Betty Miller, Coordinator, The Family Council: Empowerment for Families in Addictions and Mental Health: I would like to start by saying thank you to Ms. Mayeur and Ms. Whitney for sharing their stories. I know it is not easy to tell your story, and so I appreciate that you are here today. It is a big step.

I confess that I cobbled my presentation together yesterday and it turned out it took 14 minutes, so I will have to jump in and alter it a little.

I think that we do need a national strategy, and I do not know exactly what that would look like, but I imagine it would set some minimum standards for practice across the country, develop a vision, leadership, and those kinds of things. I will leave it up to the people who know more about that sort of thing than I do to hash it out.

I will just jump in on page 2 of my presentation and hope that I do not go over seven minutes here. I will start by talking a little about consumer/survivors.

I am a consumer/survivor. I have an eating disorder, bulimia nervosa. I come from a family full of addictions, full of mental health problems. I have seven or eight diagnoses and have been on a hundred different medications. I have been a social worker for 27 years.

I believe that through federal government transfer payments to the provincial governments, you can provide some real leadership, and these are some of the things that families would like to see happen, at least the families that I have consulted with in the family council.

Fund consumer/survivor organizations and let them develop anti-discrimination projects. They know where it hurts and where it counts. They will do a great job if they have control and do the hiring. There is such a wealth of excellence in consumer/survivor communities. Give them a break and some resources. Quit hanging on to a medical model of non-care that is, essentially, a failure.

Consumers can and should be delivering health care to one another. Let them hire their own doctors and nurses, their own peer workers and outreach teams, dentists, lawyers, social workers, recreational therapists, mindful meditation teachers, DBT therapists and medication experts. Transfer some money to the provinces to develop a couple of pilot projects in the form of a family health network or a community health centre managed by clients. See if it provides good, or even better, outcomes. Do a few pilot projects, with no commitment, no guarantee. Build in your own federal accountabilities. It is just another study. Make it a priority. Why not?

In fact, your own commission has discovered, along with the Ontario provincial government, that mental health and addiction health care is a top priority for citizens generally, and both levels of government have consistently heard that clients and families need to be at the table, need to be in the centre. This is not rhetoric. It is real. The federal government has the ability to shape health care reform through transfer payments for health care reform initiatives. Put clients in the centre. Pay them. Everyone is saying this. Please do it.

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. Families, or as you described us in the report, supporting caregivers, provide far more mental health and addiction services than the system ever has or is ever likely to. Yet we received less than half a page of reflection in your Issues and Options document. That is on page 33.

The family council responded to the Kirby commission in July, and our response is attached to this document for your convenience. We believe, as we stated, that the three priorities for action should be: One, to ensure access to care; two, to invest in providing a continuum of care in the community; and three, to invest in complementary forms of therapy and counselling. I will not belabour these points. You can read our position if you wish to; as I said, it is attached.

However, I will belabour this point: 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.

Families have legitimate fears distinct needs of their own. For example, when we call the police because we are too unsupported to handle a situation, our relatives end up in jail, and then in the forensic system. Then we cannot get them out, they are overmedicated and put in restraints and isolated. They get worse. Then they are discharged and sent home — no follow-up, no home care, nothing. We push for harsher community treatment orders because we need help and there are no resources. Now, there is a recipe for a family disaster. We end up estranging our loved ones and sometimes losing our families. What system are we clinging to?

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. Maybe even a consumer could come out and help directly. We need more Gerstein Centres, more home care. These need to be real services for families, and people need to be paid to provide them, and we are speaking here about home care in addictions as well as in mental health. Do not assume that it is so different in our homes and in our lives, whether it is addictions or mental health. It is only that we choose to ignore one or the other for reasons related to our resources, and to discrimination.

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.

Families can also be helpful when it comes to policy and infrastructure. We have been trying hard for a long time to figure out every angle, and the government would be wise to hire us to help you to develop these sectors.

Again, in Ontario's mental health and addiction service consultations this came through as one of the two clear priorities for action: Put clients and families in the centre; and the second priority was to integrate addictions and mental health. This is what we should do. This is what you should do.

I will end soon, but wish to briefly say something about addictions and mental health care vis-à-vis primary health care. We are the poor cousins, for sure, and that is because of ignorance and fear. Hopefully, it is not due to strategy. Addictions and mental health services need to be better integrated into primary community health networks. These work better in decentralized and local settings. Services are linked to local communities, but are properly connected to hospitals and to family doctors, and when hospitals and family doctors fail us, and they do, then the families and communities struggle and suffer, as you heard today.

However, please do not pull any more resources out of the hospitals. They are not providing adequate care as it is. They are understaffed, people are overworked, and the hospitals are just barely surviving in mental health and addictions. Clients are not admitted because the crisis is not serious enough, and home they go. Then the crisis blows and everyone suffers. Then it is $500 per day in the hospital, or more in a forensic situation, when everybody actually wants to be home.

I am currently working with families who want to organize to do something about waiting lists. They came to me and said that two years’ waiting for therapy for their adult children is not good enough. Whose responsibility is it to do something about our citizens who commit suicide because they cannot wait for years for help? Then we close the waiting lists because of the suicides. We close our waiting lists in order to sidestep our responsibilities and salve our consciences. That is how we ignore this problem.

Who has decided that their lives are not worth saving? How have we decided this? When we think about waiting lists, we think of MRIs and cancer, and this is fair enough, but why do we never think about mental health, addiction, suicide? What statistics are gathered about our people, your people, who have committed suicide while sitting on a waiting list, pleading for some help? We do not even afford them the dignity of being a statistic.

We do not as a society have the right, economically, morally, or otherwise to deny health care to people with mental health and addiction problems. Yet we are denied. Mental health and addiction service is primary health care. Just ask someone on our long waiting lists.

On behalf of my board of directors and our membership, thank you for hearing me today.

The Chairman: Thank you for your comments. I wonder if I could ask Ms. Whitney a question.

When we put out our report, my office got two or three phone calls from parents of autistic children essentially saying — I will paraphrase — how dare we include autism in a mental health report, because autism was not a mental illness. Since you are with an autism society and have an autistic child, can you help us a little on the question of whether we should or should not be commenting on autism?

Ms. Whitney: Well, in my opinion, every illness is actually a physical illness, so it seems rather redundant to split hairs on whether we will call autism a mental illness, a biological illness or a physical illness. Even mental illness takes place in the brain. The brain is part of the body. Therefore, it is actually a physical illness, so we would be splitting hairs.

I think that what people are afraid of when we call autism a mental illness is that we have to be respectful of these individuals, these voices that cannot really speak for themselves. Are they actually ill, or do they have a disease? The WHO classifies autism as a disease in its book of classification, which is referenced in the report for you. We have all these different organizations calling autism many things, but one thing is for certain: It should be included in your report because everyone else in this country has turned their back on this disease. I think it is okay to include it.

The Chairman: Which is, frankly, what prompted us to include it in the first place, and I admit to being quite surprised — not offended — by the phone calls. I thought we put it in precisely because nobody else was.

Ms. Whitney: I think it was a very wise decision on your part.

Ms. Mayeur: Actually, I do not even like the term “mental illness.” I feel that just as every other organ has illnesses, these are all brain illnesses, as are MS, ALS, autism, mood disorders. Anything that affects the thinking and feeling processes of the brain is a brain illness.

The Chairman: Right.

Ms. Mayeur: Maybe we need to get away from the word “mental” altogether.

The Chairman: Thank you. Senator Cordy, by the way, is from Nova Scotia and was a primary school teacher for a long time and a principal before she joined the Senate. People always like to know a little about you.

Senator Cordy: Thank you to the three of you for telling your stories this morning. As I said to Ms. Hook, who was here earlier this morning, when you hear all these stories, you want to sit down and cry, but crying will not help, so we will continue to work on our report and be advocates for the people telling the stories.

Ms. Miller, you talked about your role as an advocate for families, and I think that is very noble. There is somebody with a mental illness in my family and my husband and I have been the advocates and the helpers. To us the system is extremely frustrating, because you are trying to help the family member, and yet you are stymied and not given information, not kept in the loop. I am a Senator and he is a professional, so somebody not in those situations must be that much more frustrated.

I spoke to parents of two autistic children in Nova Scotia and they told me that not only were they dealing with two autistic children, but the husband himself developed depression. He said, “Suddenly, you are dealing with two children; it is a lifelong thing; how will you care for them; they are likely to outlive you; and all these emotions are there. Consequently, he himself had depression, so then the family was dealing with two issues.

If people are dealing with a family member who has a mental illness — that is how we have been referring to it — should they have an advocate to help them navigate the system so that they avoid going into depression trying to work through the maze?

Ms. Miller: They need to have four or five advocates — seriously. I am an advocate and I am a Caucasian, well educated, in a management position and linked to CAMH, and I fail most of the time. I have been doing advocacy work for 20 years. I fail most of the time.

Senator Cordy: Is it a funding issue? Should there be more organizations such as yours to allow people to walk in and gain a comfort level?

Ms. Miller: I think the core of our argument for many years now has been that families and clients need to be at the centre, to make some decisions. I am a family member, I am a social worker and I am a client, so I have a pretty broad perspective, but I would not say ”This is what we need.“ We need to put the families in the centre where the issues concerning families are; and we need to put the clients in the centre where the issues concerning clients are; and we need to put both at the table when the issues concern both. If we had 5 million more advocates in Canada and the system remained exactly the way it is now, you would need a further 5 million.

Senator Cordy: Therefore, the system has to also change. Ms. Mayeur?

Ms. Mayeur: I would have liked the patient advocate at the hospital to have a policy when dealing with mental illness whereby the family and the patient are consulted before discharges take place. In order to free up beds, Danielle was discharged several times, inappropriately. Secondly, there should be somebody who would use every venue to find out what was available.

I think it is worth putting money into some researchers to develop government websites dealing with the specific disorders, including all the kinds of information people would need to know, but also, for instance, who is providing private therapy, psychiatric therapy, within the community.

I had a friend with two daughters. She got them to care because she happened to know of this lady. I was trying everywhere, could not find therapists, and here was one who, because she was in Ancaster, I did not access. Because there was such shame and stigma around this disorder, that information was not shared, and yet it seems to me that a researcher could indeed poll the social workers, the clinical psychologists, find out who is offering treatment in what area and in what region of the province, and make that available, not as a recommendation that you try it, but as options to investigate.

Senator Cordy: How will we get anorexia on the radar screen? You stated that the family and the client are, in fact, victimized, and I think you mentioned that there is hostility from the mainstream. People tend to think it is a stage and they will grow out of it. ”Oh, that goes with being a teenager.“ I taught elementary school, and you are right, it used to be high school students, then junior high. It is now moving into grades 5 and 6.

Ms. Mayeur: Well, that is part of my full-time job now. A lot of other people are working on this. We got a $90,000 primary health care transfer grant to run physician and front-line service provider training seminars, led by peers, on how to deal with these patients.

With the elementary teachers’ federation, we have worked up a curriculum for the elementary schools, but it is being implemented in stages because you have to retrain the teachers. You have to establish a counterculture to the one that is out there around body image, for one, and dieting.

I talk to teachers college students and I bring them the best kind of prevention materials, but talking about prevention, it would be nice to see our ministries of education make prevention an issue and put it on the radar screen.

We have a video that goes out to the parents only, not to the children — they are too young to be talking about eating disorders — to all parents in the school, so there is an entire generation of parents, from kindergarten to Grade 8, who will get that part of it.

We gave a presentation to Ontario MPPs before Christmas and told them what was going on. Three MPPs are now very much advocates for us, and they brought along other young MPPs. It will be a long process.

Senator Cordy: Thank you. Ms. Whitney, I know you have suggested three new laws that we should adopt, but I would like to just get to the practicalities of the education system. Although we are a federal body, in the past we have not really cared whose jurisdiction it is. We will report on what we think is best.

In the early 1980s, we had inclusion into the school system of children who may need additional support, and at that time, we were told that we would have low class numbers — yada yada yada.

I used to be an elementary school teacher, and in my last year of teaching I had a child who was on the autistic spectrum. I had a teaching assistant, and it was wonderful for that student, but I also had 32 students in the class. That is the reality of the classrooms. Is inclusion working for autistic children?

Ms. Whitney: Absolutely not. In fact, children with autism are not allowed in the province of Ontario to have their qualified IBI therapist in the classroom with them. This is not a union issue. The unions have indicated it is not a problem for them because the educational assistants are not qualified to deliver this highly specialized medical treatment.

Children with autism are often barred from the education system, including my own son, who has never been able to set foot inside a public school because they will not allow his medical treatment during school hours. We know historically that special education has been detrimental to children with autism in some instances. We have peer-reviewed research studies that show this.

We are saying, allow the children to be brought under the medicare system so the treatment is provided for them. Then we can look at our respective provincial health care policies. Senator Keon, you might be familiar with Policy 81 in Ontario, which allows for treatment during school hours. It is a very seamless policy that is shared among the three ministries.

In fact, this issue is currently being addressed before the Ontario Human Rights Tribunal. I am a litigant in that process, so I am very intimate with all of the details of what we need to do. However, unfortunately, it is not recognized by the health care system, and therefore there is the belief there is no need to do anything for these children except to teach them the three R’s, and as you well know, autism is a spectrum disorder. Some children are severely impaired and some do very well.

I have to emphasize that when my son was four and five years old, he used to smash his head on a table, eat his feces, he did not know I was his mother, he could not speak. He is now nine. He reads and writes, age appropriately, he speaks, he is polite, he does not eat his feces, he toilets himself, he has some friends — all of these things that we take for granted. He wants to go to public school and he does not understand why he cannot.

He still suffers from symptoms of autism that need to be managed by a medical professional, not by an educator. We do not have educators managing diabetes, suctioning, catheterization, or any other medical condition during school hours. It is ridiculous. It is negligent.

Yes, access to education for children with autism in this province is a big issue, but we can fix it. There are solutions, and the Government of Ontario has been provided with those solutions, but they refuse to implement them. The funding is there in the education budget, $63,000 per child that could be redirected into medical treatment to allow children with autism over the age of six to access the same treatment that children under six currently receive in this province. The solutions are there.

Senator Cordy: Therefore, we need to break down the silos and work together for the betterment of the children.

Ms. Whitney: That is right.

Senator Cordy: Thank you.

The Chairman: I should say, by the way, as you can tell, Senator Cochrane is from Newfoundland. You will get the accent. She is also a former teacher.

Senator Cochrane: I have a supplementary question for Ms. Miller. You did say you failed. How did you fail? You have been so knowledgeable and you have the background. You have had every experience in regards to being a help and an aid to all these people. What do you mean when you say you failed?

Ms. Miller: If a family came to me, normally because their loved one is not getting treatment or has been in jail due to mental health problems, and they are quite at their wits' end by the time they talk to me, I would use my connections. I would talk to a lot of people to try to get the kid out of the forensic system, for example, or have another review board hearing, or try to get their brother into the system, whatever the situation is. Yesterday, I spoke to a family member who had to drive her brother to Alberta and did not know what to do with her 19-year-old son, who has schizophrenia. Is there any respite care for her, for her boy? From the simple to the very complex, when a family member says, ”This is what I need,“ normally, I am unable to deliver.

Senator Cochrane: The system fails.

Ms. Miller: The system fails.

Senator Cochrane: Do not say ”I.“ You did not fail. There are times that we all have to pat ourselves on the back.

Ms. Miller: Yes, okay.

Senator Cochrane: You had better do that because you are in such a difficult position and need lots of pats on the back.

Ms. Miller: Yes. Thank you.

Senator Cochrane: Let me go to autism. I have a next-door neighbour at home who has an autistic child, but she has hope. She is working, and there is support. Through an organization in my province, a person will come in and help the child for a certain number of hours during the day. He is severely autistic. He is not aware of his actions, he pounds his head on the hardwood floor and he cannot communicate. They have to feed him separate food, literally feed him. Is there no help like that?

Ms. Whitney: I believe you are referring to the Newfoundland IBI program, which provides up to 20 hours of intensive behavioural intervention, and a feeding program would be part of that.

It is interesting, and I am not sure if you are aware of this, but in your province, parents took the issue of wait lists for that type of treatment to your Human Rights Commission. In fact, your neighbour is very fortunate, let me tell you, because the majority of children with autism do not receive that kind of treatment. They will grow older on wait lists and never receive a day of treatment.

Your commission found that those wait lists were a violation of the Human Rights Code in your province. It was appealed by the government, and it was upheld on appeal. I do not know what is happening now with respect to litigation in your province, but I do believe you are referring to the very treatment that I was discussing today, IBI. It is the only effective treatment that we have for autism, and your neighbour is most fortunate. 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. My grandfather developed this province's health care system and my son is outside of that. 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. He is improving, but I have given up everything to save my son's life — and you know what? I would do it all again. I have given up my health, my husband, and, at times, my country. I had to leave Canada to seek treatment when they would not provide it here, and families are suffering. Parents think about killing themselves and their children in this country. It is horrible. Your neighbour is absolutely one of the most fortunate Canadians.

Senator Cochrane: She knows that, of course, but now we have these children in our schools as well. My daughter teaches special ed. I call it that because that is the term that was used when I was teaching, but now it has a different name. She has an autistic child in her classroom, and she tells me stories when comes home. They are human stories, loving stories. It is wonderful. The children are recognizing these kids, and you know what? Children have feelings, and they can communicate with these kids better than anybody else.

Ms. Whitney: I will tell you something. I believe that discrimination and hate are learned behaviours, and that almost 50 per cent of children with autism who receive treatment before they enter school, ideally at age 2, will go on to become completely indistinguishable from their peers. In other words, with this treatment, there is a 47 per cent recovery rate. Now, I know many people do not believe in recovery when it comes to autism, but I have seen these children with my own eyes, and if I did not know better, I would never be able to detect one trace of autism in their little bodies.

Senator Cochrane: That is wonderful.

Ms. Whitney: The recovery rate is 47 per cent. The rest go on to improve remarkably, and we are not providing that treatment? We should be ashamed of ourselves. Yes, they do go on to school, and yes, they do go into the community, and let me tell you that the numbers have gone from 1 in 10,000 seven years ago to now 1 in 166. What is going on?

Within five years, we will be looking at 1 in 100, and if you do not think that it is scary, let me tell you something. We have talked to economists, we have done cost/benefit analyses of treatment, and if you do not provide it, within 15 to 20 years, autism will begin to collapse the internal Canadian economy. It will, if the numbers keep going the way they are. We have to do something.

Senator Cochrane: I have a supplementary question for Ms. Mayeur. I am just wondering, when you said that you could not get physical exams for your daughter —

Ms. Mayeur: No, I could not get admission for my daughter when she was around 69, 70 pounds, but within the central-west eating disorder area, we have a hard time getting physical assessments for children who are presenting because on-call doctors are not willing to do that. I do not know whether it is the fee schedule or what, but that is one of the top items on the wish list of our six centres, to get pediatric assessments. Of course, when these children develop eating disorders so young, at a developmental age, it is even more crucial.

Senator Cochrane: I will ask you this question: Do you think it would have been easier had we had a two-tier system?

Ms. Mayeur: No, because we have not put resources into training psychologists and psychiatrists to deal with this and paying them adequately, so a two-tier system would mean that those who had means would suck all the trained personnel out of the system and leave average Joes like us even more bereft.

Senator Cochrane: But you had to wait three years.

Ms. Mayeur: I know. I was waiting three years and other people were bumped in. I know people who, out of despair, sold their homes to take the child to the States.

Senator Keon: As Senator Kirby mentioned, we have had quite a number of calls and emails from people with autistic children saying to us, ”Why are you including this in a mental health study? These kids have problems enough without including them in this category.“

Yesterday morning just before I left, I took a call. My secretary put the call through because she thought I should take it. There are so many calls, as you know, and we cannot take them all, but this seemed special. This person said, ”I am really concerned about autism getting lost in your report. It will be a huge report, dealing with a huge subject, and I think autism needs a report of its own.“

I do not think we could do a separate report on it. We have not discussed our next priority when we finish this report in December. I have already settled on my priority, and I have not even shared it with the rest of the committee yet, but I think there is a priority that would probably be ahead of autism, anorexia or whatever if we were to do a special report.

Tell me your concerns about this. This was a highly intelligent person. I must congratulate you for the enormous amount of work you have put into this. It was an absolutely superb presentation — yours too, Ms. Mayer — and I am fully aware of the time you have taken to put this together, but this was also a highly intelligent person I was talking to. What is your response to this?

Ms. Whitney: Well, I would say yes, it does need a report of its own, but in the interim, I think it was important to come here today. Clearly, if the courts have turned their backs on these children and the equality rights in the Charter have essentially been gutted, it was absolutely critical for me to come and put on the record that we need three new pieces of legislation. While I understand that you are part of the Senate, you still have the power, the sway, and the skill to go back to your colleagues and put this before them. It makes sense to do it.

If it gets lost in the report, that would be tragic, because I do not know if any community has suffered as much as these children have. People, including myself, have spent thousands and thousands of dollars out of their own pockets on litigation, only to be left standing at the Supreme Court of Canada.

It is imperative that you address autism in this report, but I do believe that the only way that autism will ever be treated, and many of these other disabilities, is if you introduce, at least, a Canadians with disabilities act.

I am sorry that the person may have had a different concern. I am not so concerned that the issue would be lost. I think it is being addressed today. You are allowing me to speak. You are hearing the voice of these children today, and you can take that and my report back and enable change to take place.

Senator Pepin: Do you believe it would help the autism case if there were a charter of rights for mental health in which the inequality, injustice and discrimination would be addressed?

Ms. Whitney: Absolutely. I know it would help, because in the United States, the Americans with Disabilities Act provides for compliance officers. When you visit websites for universities, hospitals, anywhere there is an access issue for a person with a disability, they say right up front, we comply with the ADA by doing this, this, this and this.

Right now, the Charter will not protect anyone in this country with a disability. We need a Canadians with disabilities act. In fact, they rarely go to court in the United States because problems are solved at the compliance officer level.

Somebody mentioned having more advocates. If we bring in a Canadians with disabilities act and hire compliance officers, half of the red tape, half of the problems brought before you today, would disappear.

Senator Pepin: Great. I have another question for Mme. Mayeur. You said that your daughter was sexually assaulted, but at that time, there were no psychological services offered to her?

Ms. Mayeur: No. I phoned all sorts of ministries and regional health bodies; I called everywhere. She took training for volunteers for the Halton Rape Crisis Centre, and that is when she told me. She said this had happened and she was now aware of a very good therapist, and that is why she was telling me. I called around to see what was available within our own community. I am a terrible driver and going to Hamilton was frightening for me, but there was nothing.

Right now, I think Nina's Place at Brant provides contact with some services, but I am not sure that they are covered, and that is a point I did not make in my presentation. We pay psychiatrists through OHIP, but not psychologists, and yet some of the most effective people in the treatment of eating disorders are psychologists, social workers, mental health workers, and that inequity should be addressed.

If we do not have enough psychiatrists, fine, let them train people, let them do the medical monitoring part, but hire psychologists who have been trained in the area.

Senator Trenholme Counsell: I want to ask a very general question, and I must say, Chair, I have not been at the hearings until now, so this may have come up before. We are talking about, in some respects, the absence of services for those who are mentally ill, the Canada Health Act, et cetera, and I do not understand why you continue to use the word ”client“ or ”consumer“ rather than ”patient.“ I would think we are talking about patients and their families, but I have only heard that word ”patient“ perhaps once or twice this morning.

Ms. Mayeur: I think it has to do with the fact that in many cases, this is still not recognized as a physical illness in some segments of society, and also, we are trying to found a Danielle's Place in our area, a support centre much like Sheena's Place. There you have to use ”client,“ unless you are providing medical treatment, so it depends on what service you are offering.

Senator Trenholme Counsell: I can understand that, but it seems to me in a general sense, we keep hearing ”client“ and ”consumer,“ and we are not talking about patients. We talk about the patient/doctor relationship, the patient/nurse relationship, although I know ”client“ is used in some sections of the health care service. Ms. Miller, how do you feel about that?

Ms. Miller: I think there is a small can of worms here. Some of these topics are controversial. Post-traumatic stress disorder, for example, is a diagnosis that some people claim has a purely external cause — you have been raped or whatever, or you have been in a war — and not a biological cause, but we are hearing that the biology and the mind are pretty much one, and to some extent, it is splitting hairs.

There is the term ”consumer,“ there is the term ”consumer/survivor,“ there is the term ”patient,“ and there is the term ”client,“ and all of them have meaning and a history. People identified as ”patients“ have historically, as you know, been subjected to electric shock therapy, medication, restraints, they have been ”psychiatrized,“ and so they try to shake off the label of ”patient.“ There are many people who have been through the psychiatric system who have been traumatized and re-traumatized, so they refer to themselves as ”survivors.“

The ”survivor“ part of consumer/survivor refers not to surviving the mental health problem — the language that I use — but the treatment for it. ”Consumer“ means somebody who consumes the services, and it is trying to put the language on more of a footing with somebody who is purchasing services through their tax dollars, so people do not feel they are as low as the ”patient.“ I am talking about language here.

It is very similar to the situation in women's communities, feminist communities, when we use to hear, ”Go get me a cup of coffee, girl.“ We said, ”We are girls,“ and we reclaimed the word to mean what we wanted it to mean, not ”servant.“

There is a shift in language and mentality, especially as people are focusing more on recovery. We hear the tales about when people get help, they recover, and so we want the language to be stronger, more positive and forward looking.

Certainly, somebody else would give you a different answer, but that is the best I can do for now.

The Chairman: Thank you. I will say that in our first report, near the beginning somewhere, as I recall, we explained that we had used the word ”consumer“ partly because it is not purely a medical model, which is what ”patient“ connotes.

Ms. Miller: Yes.

The Chairman: Partly, we were talking not just to people who use the services, but to their associated families, so we did not want to use ”survivor,“ but we recognize language matters a lot.

Ms. Miller: Yes, for sure.

The Chairman: Finally, a question from Senator Cook, who is also from Newfoundland and was very much involved in the community health service program in the small communities around the coast.

Senator Cook: Thank you very much for appearing this morning. I will speak for myself. You have had me on a steep learning curve here today, and I suspect that is true of all of us who sit around this table.

When you talk about a disabilities act, I want to throw in a spike, if I may, because then who determines the disability? It is all very well to suggest a disabilities act. Then it becomes the details: adolescents, children, adults, who and what.

My first thought when it was raised here was to say, what about the UN Convention on the Rights of the Child? Would that not cover that which we are trying to achieve, rather than putting something else into the mix?

Ms. Whitney: First, let me take care of your spike. We do not need to reinvent the wheel. Such legislation already exists, and it is working, in the United States. I have included it in the report so that you can take a look at it. It is in the index, so you can see what is covered by the definition. It is a very successful piece of legislation.

Unfortunately, I cannot say the same for the Convention on the Rights of the Child. It has been ratified, as you know, by Canada, and therefore it is supposed to be a legally binding agreement for this country. However, if it was legally binding and did the job that it should do, which is protect the most vulnerable citizens in this country — and let’s talk about doubly vulnerable people, children who cannot even speak for themselves — then it should have protected them at the Supreme Court of Canada, but it did not, and it has not protected them in this province either.

There are injunctions being granted every day in the lower courts in this province stating that if the treatment is not provided, these children will suffer irreparable harm. The government appeals every single one of those injunctions, and one of the conventions that we have relied on is the Convention on the Rights of the Child. It is comprehensive and should work, but it failed at this country's highest court. I cannot say often enough that if you want to protect people with disabilities in this country once and for all, you must bring in a Canadians with disabilities act; and you need not reinvent the wheel. It works in the U.S. and it will work here.

Senator Cook: I am searching for answers, as we all are. What if Canada had national standards with appropriate protocols, because I hear you saying that what is not available for your child in Ontario is available for our population in Newfoundland, if not to the nth degree, to a greater degree? I hear you say that psychologists are not paid under OHIP. Well, they are paid under medicare in my province.

The Chairman: It is a provincial decision.

Senator Cook: Yes.

The Chairman: They are in Nova Scotia, too, by the way.

Senator Cook: If we are to have some vision or solutions here, surely a national standard with the appropriate protocols is something that we should dare to investigate.

Ms. Whitney: At the very least, the Canada Health Act should be amended to include people with mental illness, which would include autism. We need federal protection. We need legislation. We do not need goodwill. We do not need good ideas. They did not work at the Supreme Court of Canada, which should have protected these children. Look at what happened. It is a disaster.

The services in your province are under the social services ministry. They are not under the Ministry of Health. Children with autism are left at the mercy of the bureaucrats, and I am imploring you with everything in me because I cannot tell about you the suffering. I have watched my son.

Senator Cook: I should share with you — and you probably know — that in my province there is a very aggressive fundraising effort to build an autism facility for children. They have raised $250,000 and are looking for more to turn the sod by June; but then I wonder, we will have this physical structure, and then who will implement the programs that are so necessary? Do then we go back to our provincial governments and say, ”We have this building. We have this facility. Now, who will staff it and who will provide what is required for the children?“

Ms. Whitney: I do not think that buildings are the solution here. We have in Ontario a palliative care system that delivers treatment in a person's home. There is no need to reinvent the wheel in this province or any other. We could use that system to deliver effective autism treatment at a very economical cost to the taxpayer. It would be much more cost efficient than building big structures.

Look at hospitals that pay for abortions. Those are often not provided on site at hospital facilities. There is no reason not to expand the Canada Health Act and the insured benefits that it covers to include people like psychologists and other allied health care professionals. This was thoroughly investigated in the Auton case in B.C., and I would certainly ask you to take a look at that.

We need to be willing, at least until we can build the capacity of our professionals in this country specifically for autism treatment, to open the border and allow direct funding, so that we use the money most effectively for the children and keep the cost as low as possible.

Let me give you an example. In Ontario, the autism program has nine regions throughout the province. It is a structure, it is a building, with people in it, and their cost to deliver the treatment program for one year is $108,000 per child. The actual cost to treat the child is $55,000. What has gone wrong there?

The Provincial Auditor of Ontario has just done a thorough report, which is included in the second report that I gave you, showing exactly this, the high figures when you try to do it through government agencies. It is a waste of the taxpayers’ money. We can make this much more cost efficient.

I am not sure that building structures is the answer, but the money is there for the treatment. It is there in government budgets that are already allocating funds that are being wasted, and we can use them much more effectively through a direct funding option using palliative care as the model and moving it under fee for service.

Senator Cook: Thank you. Ms. Mayeur, I thank you for your story because I am the mother of an anorexic girl, and mine is a good news story. She was one of your 40 per cent — it took three-and-a-half years — and it was because of the loss of her dad, who was a cancer victim. She has two beautiful boys and I run around the Senate every now and again showing pictures of John and Luke. Mine is a good news story, but she had one-on-one care.

I live in a not-too-populated part of Canada. She had a psychologist and a dietician, and she signed contracts with them, even on what she ate. It was a partnership, and it is a good model, Mr. Chair. It worked for her, and she had a mother who was not quite in the loop.

Ms. Mayeur: Yes, it is very much driven by the patient

Senator Cook: Thank you for sharing your story.

Ms. Mayeur: Yes, I have to commend Newfoundland. I was speaking at Homewood last week when I was approached by a 42-year-old man who was on his second stint at Homewood, and he said Newfoundland is wonderful. They have two people to work with, although it is a small area. They are good for him. They sent him to Homewood no matter what the cost when it became intense. He said to me, ”I do not understand why I have this illness because I have a wife I love and children, and everything is fine. Why am I sick?“ I said, ”Well, there is a genetic factor in many people,“ and he said, ”Oh, I have a sister who is bulimic and an aunt who had an eating disorder.“

Senator Cook: Mr. Chair, it did not cost me anything — not one penny. Medicare paid.

Ms. Mayeur: That is so wonderful.

Senator Cook: The need for national standards could not be clearer.

Ms. Mayeur: Thank you.

The Chairman: May I thank all of you for coming and allowing us to prevail upon your time. I think we originally told you we would be finished at 11:45, but we really appreciated your taking the time to be with us.

I should also say why, in case some of you wondered, in introducing my colleagues, I told you what they did but I never bothered to mention whether they were Liberal or Conservative. The reason is that has never been an issue on this committee. We have always reached unanimous decisions, and I think from time to time, most of us forget who is with what party in any event, so that is why I stayed away from that partisan identification.

Senators, our next witness is Carrie Hayward, Director in the Mental Health and Addiction Branch of the Department of the Ontario Ministry of Health and Long-Term Care who is responsible for mental health. Ms. Hayward has been in her job for less time than we have been working on the issue. On the other hand, she spent many years in the Aboriginal health field, so she clearly has had more than a little experience with mental health. Ms. Hayward, thank you for coming.

I know you have a presentation, but I ask you to tell us before you start where your branch fits in with health in Ontario. Then, do your presentation and we will ask you lots of questions.

Ms. Hayward also brought lots of backup with her, so if she really wants to give them a hard time, she will do what I used to do as a deputy, which is take all the tough questions and turn them over to one of the other staff with her.

Ms. Carrie Hayward, Director, Mental Health and Addictions Branch, Ontario Ministry of Health and Long-Term Care: Thank you very much for the opportunity to present today.

Before I start, I will give you a bit of an overview of how the Ministry of Health and Long-Term Care in Ontario is organized. I will start by telling you that Children and Youth Services are under the auspices now of a new ministry, the Ministry of Children and Youth Services, which plans to make a submission to you at a later time, so I will not speak in very much detail today about that.

The Ministry of Health and Long-Term Care is an organization with a budget of over $30 billion. In fact, 96 per cent of our budget is a transfer payment to a hospital, a community agency, a public health board, and to many other agencies that provide health care at the local community level.

We have seven regional offices who are working with the transfer payment agencies on a day-to-day basis, but in terms of the large organizational picture, we have a number of divisions headed by assistant deputy ministers. They include the Acute Services Division, which focuses on hospitals and the ambulance services in Ontario, amongst other things. We have a Public Health Division that deals with all the public health issues, and of course, is subsequently dealing with some of the recommendations from the various commissions that have been held on Severe Acute Respiratory Syndrome, SARS.

We also have a Health Services Division that deals with laboratories, health providers such as physicians, and alternate payments and academic health sciences centres. We have a Policy Division that provides broad, strategic, policy and health human resource directions to the ministry. Within that division is a group that works on mental health policy.

My own division, the Community Health Division, has responsibility for community health centres that some of you may be familiar with, which provide an interdisciplinary model of care. Our division is also responsible for community-based, long-term care, home care, and home nursing, et cetera, as well as the long-term care branch that deals with nursing homes.

I am the Director of the Mental Health and Addictions Branch and have responsibility for all community mental health services in Ontario as well as specialty psychiatric hospitals. To do our work well in the branch involves considerable dialogue across the ministry on various topics that we deal with.

I hope that gives you a slight overview of how we are structured.

While the Ministry of Health and Long-Term Care has identified a vision for reforming mental health and addiction services, it is recognized that our provincial approach needs to be linked to a larger strategy. The Interim Report: Mental Health, Mental Illness and Addiction is an important achievement because it represents the first in-depth examination of mental health policy and practices from a national perspective, and you are to be commended on the release of that report.

The report provides a comprehensive examination of key issues for people affected by mental illness and addiction and their family members. It is based on an extensive consultation process that considered the views of many organizations, individuals and members of the general public. The dialogue that has taken place with members of the community, in developing the report, is important in its own right.

We commend the Committee on this open process, which raises awareness of mental health and addiction issues in communities across the province and the country, and invites participation of those who are directly and indirectly affected.

The Ministry of Health and Long-Term Care welcomes the opportunity to work collaboratively with our federal, provincial and territorial colleagues in addressing issues related to mental health and addiction, with the goal of improving the quality of life for individuals most affected, especially those who will experience a serious mental illness in their lifetime.

We understand the Committee's recommendation for a national action plan on mental health, mental illness and addiction. Such a strategy could complement the existing Canada’s Drug Strategy, and could build on positive developments in all provinces and territories with flexibility to address different needs.

However, commitment to the development of such an action plan would require extensive discussion with the provinces and territories regarding roles, funding and accountability. We also note that implementation of such a plan would be a considerable challenge, one that has been faced by other countries with mental health strategies and policies at the national level.

In Ontario, mental health disorders are one of the three leading causes of disability, which is consistent with statistics around the world. One in five Ontarians will experience a mental illness in their lifetime that is serious enough to impair their daily functioning, while 2.5 per cent, or 240,000 people, will have a mental illness requiring hospitalization or use of community supports in their lifetime.

In Ontario, 20 per cent of adults have personally experienced problems relating to alcohol and drug abuse. Although 67.6 per cent of Ontarians self-rated their mental health as very good or excellent, 7.2 per cent of Ontarians self-rated their mental health as fair or poor.

In 2002, 8.7 per cent of Ontarians had contact with services or supports for mental health or substance abuse problems, and 4.5 per cent reported unmet mental health needs. Surveys indicate that between 35 per cent and 50 per cent of people seeking substance abuse treatment have a psychiatric disorder.

In Ontario, we have a long history of reform beginning in the mental health sector. Beginning back in 1983, names such as Scott, Graham, and Newman are all part of that legacy. Since 1999, we have been pulling all that learning together to develop a framework, Making It Happen, an implementation plan for mental health reform, and an operational framework for the delivery of mental health services and supports.

That report was followed in the same year by a document, Setting the Course, a framework for integrating addiction treatment services in Ontario. Subsequently, we have published a number of policy frameworks for employment supports, streamlining access to services, accountability frameworks, geriatric mental health outreach teams, program policy, and a new program policy for early intervention in psychosis.

I brought copies of these documents for the Committee. Setting the Course is a framework for integrating addiction treatment services that provides direction on reform of the addiction treatment system including improving service delivery, monitoring evaluation of services and organization of services.

The mandate of Ontario's addiction programs is to reduce or eliminate addictive behaviours, including not only substance abuse, but problem gambling. There are currently 160 substance-abuse-treatment and problem-gambling agencies funded by the Ontario Ministry of Health and Long-Term Care, and we spend $137 million annually on addiction programs.

With respect to mental health, we are committed to the development of a comprehensive community-based system of mental health services and supports as set out in Making It Happen. These two documents lay out the implementation plan for that framework.

Making it Happen describes a strategy for a comprehensive and responsive mental health service delivery system in Ontario and sets out the goals and implementation priorities for mental health reform. The priority populations addressed by the framework are described using a levels-of-need approach that includes first line, intensive and specialized services.

Currently, the Ontario Ministry spends more than $3 billion a year for mental health programs and services provided by community mental health agencies, private practitioners such as general practitioners and psychiatrists, provincial psychiatric hospitals, specialty psychiatric hospitals, general hospitals, long-term care facilities, and drug benefits.

There are 334 community-based mental health programs across the province, which offer a range of services and supports. They include crisis services for clients and families to assist in crisis prevention and ongoing support, providing such things as medical intervention, counselling, referral and advocacy, intensive case management to meet a person's perceived needs, and changing needs such as assessment, advocacy, outreach, monitoring and evaluation.

We also have a proud history of Assertive Community Treatment teams to provide comprehensive treatment, rehabilitation and support from self-contained 10- to 12-member multi-disciplinary teams, consisting of psychiatrists, registered nurses, occupational therapists, social workers, vocational specialists, and peer specialists.

We also focus on supportive housing, which is a combination of unique buildings as well as leased units and individual supports; employment supports to secure and maintain employment; consumer initiatives for mutual support, knowledge development, skills training and consumer businesses; and family initiatives such as family self-help groups and their involvement in planning, evaluation and governance of care delivery.

In 2000-2001, nine mental health implementation task forces were established across Ontario to make recommendations to the ministry on the implementation of mental health reform based on Making It Happen. We also established a Forensic Mental Health Services Expert Advisory Panel to provide guidance and a provincial strategy for implementation of a comprehensive forensic mental health service system.

Through addiction treatment system reform, a number of key initiatives have been implemented, including standardized assessment tools, admission and discharge criteria and service definitions. In addition, agencies have been working together to increase their capacity and the system's capacity to better serve youth, older adults, women and people with concurrent disorders.

In Budget 2004, the government announced an increase in community mental health program spending of $120 million. That will bring provincial expenditures to $583 million for community mental health services by 2007-2008, with the goal to reach an additional 78,000 clients. Of that commitment, $65 million was allocated in this fiscal year. The enhanced community mental health funding focuses on three areas.

The first area is implementation of four key programs: crisis response, early intervention in psychosis, case management, and Assertive Community Treatment teams that will help to reduce hospitalization of people with mental illness.

This component of our plan was made possible by funding of the 2003 First Ministers' Accord on Health Care Renewal. In fact, to implement this, the ministry has used the results of a five-year, outcome-focused research project to guide our investments in ACT teams, crisis response, case management and early intervention. For example, after four years in an ACT program, clients' average hospital utilization was reduced from 86 days to 15 days per year, representing a total bed-cost avoidance of $82 million for the 2,887 clients in 2002-2003. In the Toronto region, we found that intensive case management services for people with community treatment orders reduced hospitalization by 87 per cent.

The second element of our strategy is strengthening the existing mental health system by providing the first base increase to over 330 agencies since 1991, and providing funds for new services such as the mental health registry that will connect families, individuals and practitioners with information about services in the mental health sector 24 hours a day, seven days a week.

The third element of our strategy is service enhancements that will keep people with mental illness out of the criminal justice system by providing such supports as mental health court workers, case management, short-term crisis beds, and supportive housing.

Altogether, this strategy will address the government's commitment under the First Ministers' Health Accord. It will improve service integration, co-ordination and service effectiveness. It will provide alternatives to institutional care. It will ensure resources in mental health, justice and correctional systems are appropriately directed. It will improve access to community-based care and mental health information. It will also respond to many of the recommendations by the thousands of people involved in the mental health task force process as well as the forensic expert panel.

The Senate Committee has examined a number of key issues that have also been of concern to the Ontario government in developing policy, and designing programs and services. These include identifying key factors that affect service delivery: how to address the needs of those who may not be adequately served by the existing service system, and those whose service needs are complex; how to ensure the appropriate health human resources are in place within the service system; and how to ensure adequate information systems and research capacity.

As well, specific issues such as how to address mental illness and addiction in the workplace and ways to combat stigma are also issues that the ministry has been concerned with. We will speak to these points in the presentation.

With respect to service delivery issues, the committee's vision of a mental health and addiction treatment system that is patient-centred, tailored to individual needs, focused on early detection, seamless, integrated and accessible is entirely consistent with the Ontario government's vision for mental health and addiction services.

In Ontario, we have developed mental health and addiction policy with a strong emphasis on the consumer at the centre of the services, tailored to their needs, with a focus on streamlining access and facilitating choice. This approach recognizes that individuals who experience mental health and addictions can and do recover, and they can lead full lives and contribute greatly to their communities.

The need to improve the co-ordination of services and supports to people with mental health and addiction issues has been identified as a key challenge in the delivery of mental health and addiction services in Ontario.

The Ontario government's focus on transformation of the health care system will address the need to improve co-ordination of services to clients. Implementation of the Local Health Integrated Networks, LHINs, will engage communities in health system transformation and ensure local capacity to plan, co-ordinate, integrate, and ultimately fund the delivery of services at the community level.

In recent community consultations in the 14 Local Health Integrated Networks of Ontario, mental health and addiction services were, in fact, identified as one of the top five most frequently mentioned areas in terms of patient care, administration and integration opportunities, so we figure that we will see quite a bit of attention in the next while as the LHINs begin to develop plans in these areas and focus on mental health and addiction.

With respect to early detection and intervention, the ministry also supports the committee's assertion that intervening early in the course of mental illness can improve outcomes and the ability to maintain important educational, occupational and social roles. Consistent with this, the Ontario Ministry has developed a program policy framework detailing a comprehensive approach to addressing the needs of those experiencing a first episode of psychosis.

New program funding in the amount of $4.4 million was announced in the 2000 Ontario budget and is part of the investments I mentioned earlier. It will enable each region to develop its own new or enhanced early intervention services. The funding is targeted to staffing multi-disciplinary teams including social workers, nurses, psychologists and specialty psychiatry that will provide early identification, comprehensive assessment, psycho-social supports and treatment including individual and family counselling, therapy and education, and case co-ordination and specialty case management to people age 14 to 35 that are experiencing a first episode of psychosis.

With respect to combating stigma and discrimination, the ministry recognizes the importance of addressing the stigma associated with mental health and addiction issues as noted within the committee report. Stigma can have a profound negative impact on quality of life as well as recovery. Stigma remains a significant barrier to obtaining employment, housing, and adequate income. As well, the negative stigma associated with mental health and addictions can prevent people from seeking help that could otherwise benefit from it.

The question remains, however, as to how best to influence public attitudes when research has shown that broad-based public awareness campaigns are expensive and not very effective. On the other hand, more targeted initiatives such as the Canadian Mental Health Association Mental Health Works program to assist employers to address mental health issues in the workplace may be more effective. The Mental Health Works program develops and disseminates information, tools, resources and training to assist employers and employees in meeting mental health challenges in their workplace.

As well, the Global Business and Economic Roundtable on Addiction and Mental Health investigates the effects of mental health disorders on business performance, and raises awareness amongst business people as to the impact on productivity.

With respect to specific population groups, the committee's interim report highlights specific service-delivery challenges of meeting the needs of children and adolescents, Aboriginal people, seniors, and those with complex needs such as those with both mental illness and addiction or concurrent disorders.

Examples of initiatives in Ontario that focus on the needs of these groups include our funding of approximately 50 agencies to provide specialized geriatric mental health outreach programs and guidelines for their assessment, consultation, treatment and education services.

In the addiction system, five programs are funded, specifically for older adults, as well as a number of agencies that have developed specialization in providing addiction treatment services for older adults. Funding for agencies that serve specific ethnocultural groups as well as the francophone community is part of our program. The ministry, in conjunction with Aboriginal communities, has ten years of experience implementing the innovative Aboriginal Healing and Wellness Strategy consisting of primary care, healing and family violence programs. The ministry welcomes national leadership in this area to complement our efforts.

Although not specifically included in your report, important groups requiring specific consideration are the homeless and the under-housed population who have mental health and addiction issues. Ontario has 6,750 supportive housing units for people with mental illness or addictions, but the Provincial Forum of Mental Health Implementation Task Forces called for 10,000 more across the province, so continued federal support for affordable and supportive housing is welcomed.

In the area of concurrent disorders, a number of initiatives across the province are involved in providing seamless services to those who require both addiction and mental health services. The early childhood development project for pregnant women with addictions has been implemented in 18 sites across the province and aims to improve services for pregnant women, and to improve health outcomes for mothers and their children.

We also fund 40 programs that provide addiction treatment services to youth between the ages of 12 and 24. These programs are often based on outreach models and provide services in locations accessible to youth.

With respect to human resources, the committee's report included a discussion of the issues facing the mental health and addiction sectors relating to ensuring an adequate and appropriate supply of human resources. The report recognizes the many different kinds of professionals that are involved in providing mental health and addiction services, including social workers, nurses, psychologists, case managers and many others. Ontario's investment of $120 million: we have determined approximately 1,200 additional workers will be required in this sector.

Ontario has recognized that a framework is needed to address current problems of recruiting and retaining mental health workers and to implement new investments in community mental health services. The mental health human resources framework will be aligned with the broader ministry framework for health human resources that is aimed at ensuring Ontario has the right number and mix of providers that are educated, trained and supported to meet the health needs of the province.

In terms of primary care and mental health and addiction, emphasis is given in the Senate report on the need to reform the primary health care sector to ensure that people with mental health problems can access services in primary health care settings. In Ontario, $213 million for primary health care projects has been received through the federal government's Primary Health Care Transition Fund. In that, there were nine mental health demonstration programs that have been funded at $3.6 million. It is expected that these projects will provide valuable information about the integration of mental health and primary health care.

An advisory committee in Ontario has examined the factors that need to be considered if family health teams are to address adequately the needs of people with mental illness. For over ten years, the ministry has supported innovative mental health programs in primary care settings, such as the award-winning Hamilton-Wentworth shared-care program, which aims to increase the skills and comfort of primary care physicians in identifying and managing mental health problems.

In the workplace, the report identifies an important role for employers to support employees with mental health and addiction issues in terms of disability management, accommodation policy, and return-to-work programs. As I mentioned, the ministry has established a policy framework, Making It Work, for employment supports for people with serious mental illness. The framework recognizes the important role that employers play in facilitating employment opportunities for people with mental illness, and education of employers about mental illness is an important aspect of the framework. Again, the ministry welcomes leadership at the national level in this area.

With respect to national information databases, research and technology, we are using videoconferencing for clinical, educational and administrative purposes to eliminate or reduce geographic barriers to providing mental health care. The establishment of family health teams provides us with a unique opportunity to ensure that mental health and primary care are closely linked across the province through the increased use of Telemental Health, especially in rural and remote areas. As well, the ministry also supports over 100 Telemedicine sites which provide a variety of services including Telepsychiatry.

With respect to privacy, the ministry supports the committee's emphasis on protecting people's health information. In November 2004, Ontario's Personal Health Information Protection Act was proclaimed and it addresses issues of health information privacy across Ontario.

With respect to fostering performance and accountability, the Senate report identified concerns that mental health and addiction systems currently lack accountability mechanisms, clear delineation of roles and responsibilities, and a performance evaluation system to monitor service quality and effectiveness. The Ontario government has developed an accountability framework for the mental health system to address such concerns, and has developed standards for case management, assertive community treatment teams, and crisis response programs consistent with that framework. As well, the Hospital Report Card on Mental Health Services, analyzing the performance of hospitals that provide mental health care, will be released in the spring of 2005.

In the addiction system, we have implemented the Drug and Alcohol Treatment Information System, DATIS, which provides a fully integrated and comprehensive client-level information system for all agencies funded to provide substance abuse and problem gambling treatment services. The aggregate data collected is used for planning, monitoring, and assessing system use, health outcomes and cost analysis and to support agencies in developing their own annual operating plans.

For example, through this system, we learned that in 2003-2004, the substance abuse treatment programs provided services to more than 125,000 people. Through DATIS, the ministry knows that utilization of substance abuse treatment has increased over 60 per cent since 1998. We are currently working with Nova Scotia to share this program and would be interested in partnerships with other provinces and territories.

We also have the Drug and Alcohol Registry of Treatment, DART. It operates as an information and referral service for health providers and the general public. DART, along with the Ontario Problem Gambling Helpline and the new mental health registry that will be established in September 2005, are designed to provide information about treatment agencies, services, locations, treatment availability and demand for services. These services enable the ministry to monitor wait times for substance abuse and problem gambling treatment, as well as the service mix availability in the regions across the province. In 2003-2004, DART received almost 27,000 phone calls from people looking for substance abuse treatment, and since 1993, over 189,000 calls have been forwarded to this line.

Finally, Ontario, is currently encouraging all of our community mental health agencies to implement the Common Data Set information system that enables agencies and the ministry to determine client characteristics and utilization of the system.

In conclusion, we appreciate the opportunity to highlight work that we have undertaken in the mental health and addiction sectors where it is pertinent to the work of the Senate committee. We welcome future discussions about development of a national action plan on mental health, mental illness and addiction. Key areas for federal, provincial and territorial discussions from our perspective include health services research, initiatives related to income support, housing, employment, and the promotion of consumer self-help and family initiatives, as well as data standards for reporting, policy frameworks and funding.

We will develop a more detailed submission in response to the questions and options raised in your report and we will develop this in consultation with all of the relevant program areas of the ministry.

Thank you for your invitation to speak today and we wish you well as you continue your cross-country tour on these important issues.

The Chairman: Thank you, Ms. Hayward. Before turning to Senator Keon, can I try to get a couple of facts straight, and by the way, we are not here to be critical. We are here to get facts at this stage of the game.

You said that roughly $3 billion on a $90 billion budget is the amount — I am just doing the math — devoted to mental health?

Ms. Hayward: That is correct.

The Chairman: So a little over 3 per cent, okay, and —

Ms. Hayward: 10 per cent.

The Chairman: — roughly $600 million of that $3 billion are roughly, which is roughly 20 per cent, is devoted to community mental health?

Ms. Hayward: That is correct.

The Chairman: Does that mean that the other 80 per cent goes into what I would call classic psychiatric hospital institutional care?

Ms. Hayward: The $3 billion is a combination of the community mental health, which will be $570 million.

The Chairman: Almost $600 million.

Ms. Hayward: Almost $600 million by 2007-2008.

The Chairman: Yes.

Ms. Hayward: There is over another $600 million devoted to psychiatric hospitals and general hospitals, but the balance, a significant portion, for example, to drug benefits. People with mental illness also have access to the Ontario Drug Benefit Program if they are recipients of social assistance or on the Ontario Disability Support Program, so their drug costs are in another part of the ministry under the drug program.

The Chairman: But they are included in your $3 billion.

Ms. Hayward: They are included.

The Chairman: I did not realize that you actually break down the data on the recipients of the drug benefit plan on the basis of what they are ill with.

Ms. Hayward: No, they are broken down on the basis of people who are on the Ontario Disability Support Program, so someone with a physical disability who is unable to work and who does not have a mental illness, would also have access to that program.

We are able to identify why the person is in the Ontario Disability Program, and from that, can capture what the percentage of drug program spending is.

The Chairman: Okay. In another area, a number of provinces — we had an example this morning from B.C., but B.C. is not alone — claw back federal assistance in various areas.

For example, if an individual gets the CPP disability benefit, part of that benefit gets clawed back in the sense of if a province is also providing a disability benefit, the recipient in the end does not get the complete sum of the two. The recipient gets less than the sum of the two.

Ms. Hayward: That is correct.

The Chairman: Sometimes one is clawed back 100 per cent, and sometimes it is not. What happens in Ontario on that, do you know?

Ms. Hayward: I believe, and I can check with my backup here, it is the same process, so we have people with mental illness who may be only on CPP. Then there are quite a number that do not meet CPP requirements because they may not, in fact, have had the contributions to support an income.

The Chairman: If they get the CPP benefit, does that automatically mean they do not get the Ontario benefit or they get —

Ms. Hayward: A combination.

The Chairman: — a smaller amount of the Ontario benefit? Anybody back there?

Ms. Hayward: Mr. Dixon, do you know?

The Chairman: I am looking at the backups.

Mr. Doug Dixon, Senior Analyst, Mental Health and Addictions Branch, Ontario Ministry of Health and Long-Term Care: It is really a question for —

The Chairman: Do you want to come up because, unfortunately, Hansard will not be able to pick you up. Just want to identify yourself and then —

Mr. Dixon: I am senior analyst with Ms. Hayward. I hate to pass the buck, but it is really a question for the Ministry of Community and Social Services, MCSS, and its Ontario Disability Support Program, ODSP, social assistance for people with disabilities. From what I understand, it would be broken up between the two. If you were eligible for CPP, you could be eligible for some ODSP.

The Chairman: Somebody does not get the sum of the two? They get less than the sum of the two?

Mr. Dixon: Well, I am not too sure. It is a really complex system, so it would depend on their eligibility for the Ontario Disability Support Program, and how much they were getting from CPP would be a factor. The income from CPP would be a determinant as to how much they would receive from the social assistance. Sorry, but it is complex.

The Chairman: No, I believe you are describing the case that actually exists, so I am not —

Mr. Dixon: It is a — yes.

The Chairman: I actually made the huge mistake once of trying to understand it all. I finally concluded nobody really did, but okay, there is a potential element for a clawback there.

Mr. Dixon: Yes, there is.

The Chairman: Ms. Hayward, let me ask you one last question before we go to Senator Keon.

By the way, we thank you for the fact that your department is going to give us more detailed response to that. It is really useful, and the fact that the Ministry of Children and Youth Services is going to do that also. I know Minister Bountrogianni fairly well and I know she is quite interested in what we are doing vis-à-vis children.

What is puzzling in your summary and, having been in positions as public servants as you are, I understand why the statement was the way the statement was, but there is almost a disconnect between your description of all the good things that you are doing, and I am not disputing any of that, and the description that we get from any group that we talk to on the ground. The same thing has happened in the federal program so, again, this is not unique. One almost senses that there is a province-wide policy that touches on a whole bunch of good things that need to be done, and yet when you get out on the ground where services are actually delivered to real people, you find that the picture is not nearly as rosy.

If I can tell you a personal anecdote, it reminds me of the time in the early 1970s when I was chief of staff to the premier of Nova Scotia and I went into his office one day and said, ”I have discovered two very important things.“ And he said, ”What's that?“ I said, ”The first thing is that in this office you really do have your hands on the levers of power, but the second is that the levers are not connected to anything.“ He agreed with me. That was interesting but that is our dilemma.

Our dilemma is that policies, not just yours, generally look really good in this area, and yet you talk to real people on the ground and it is awful. Can you help us understand why that is the case?

Ms. Hayward: I will venture a couple of thoughts. As I mentioned, there has been a series of reports on reform over a period of 20 years now. The most significant was in 1999, which gave the ministry a very specific approach to how it should organize services for people that now guides all the investments we make.

In fact, originally the expenditures in mental health, in particular, were about 80 per cent institutional and 20 per cent in the community, and we know over time that it is far more effective and cost-effective to treat people in the community. We are now at about 55 per cent hospital and 45 per cent community so, in fact, over time those changes have been occurring.

The Chairman: The community, as I understand it, wants you to go to 60 community, 40 hospital, right?

Ms. Hayward: That is the intent over the term.

The Chairman: That is true. That seems to be the number most people are using.

Ms. Hayward: That is correct. We also have a situation that since 1991, as I mentioned, many community agencies did not receive any base increases. There were no new resources going into the system in any large infusions. There were some specific initiatives along the way.

For example, Ontario had a homelessness initiative that brought into place 3,600 units of supportive housing for people who had been previously homeless or in shelters or under-housed, but that was one initiative in the last 13 or 14 years.

As you are saying, for some of these issues at the local level they do not have all the resources all at the right time to make significant change, so change occurs over a spectrum.

Perhaps if you can ask people with the services in 1991, are there more services available and are they getting better, they would say they are getting better and we have a long way to go. It is one of the reasons in Ontario the focus on Local Health Integration Networks is really to try to stop in some ways this trying to master-plan the system from the provincial level. The focus is to actually allow planning, coordination and service arrangements to happen more locally with that emphasis on a continuum of care, integrating people better with primary care services, and better continuity of care between the hospital and the community services.

I think the system is evolving and, yes, it still has a way to go and we know there are some specific areas where investments need to be made. It is those reports over the past years, as well as the mental health task forces that involved massive consultation, which have guided us in terms of those very specific resources that we are going to add to the system over the next four years.

Unless you are one of those four services that I mentioned: Crisis response, case management, early intervention and psychosis, or an ACT team, there are no new resources for you to expand your programming. We are making very targeted investments but that doesn't mean there are no areas of the system that still need attention.

The Chairman: Last question, two parts: Do you track by some means actual performance on the ground? If this was a consumer business you would say, do you have a customer satisfaction index of some kind within Ontario? That is the first question.

Secondly, do the provinces, because the feds are not in this business at all, have a common measure so they can say, things are better in Calgary than they are in Toronto, or things are better in Ottawa than they are in St. John's, Newfoundland or whatever?

Ms. Hayward: As you pointed out in the report, it is an area I think that the sector is grappling with. In terms of a common measure across the country, I think there might be one in the health system performance report cards that began in 2002. That does not tell you very much about the system.

The Chairman: Very macro.

Ms. Hayward: It is very macro. In the addiction sector, we actually have a number: as I mentioned, the drug and alcohol treatment information system tells us about client population, utilization, wait times, and combinations of disorders.

On the mental health side, it is more complex. We are in the process of implementing the common data set as well as a management information system, and through those agencies to get more information exactly about the kind of functions the agencies provide, the number of clients they have, and the particular disorders the clients may have.

Last week, I saw a presentation on the pilot study of this project. This data is not yet fully developed, but you can look at the data related to the supportive housing and see that most of the clients in supportive housing either have schizophrenia, a bipolar disorder or severe mental illness. When you look at the data that system collects about their previous housing arrangements, you can see that many people were in shelters, homeless, or living with multiple people, so I think we are getting there. Many agencies as well do their own individual consumer surveys about satisfaction.

Probably our most well-developed system with some amazing data is the system that has been put in place for the ACT teams. They can track people's hospitalization records, new housing arrangements, whether vocational supports are changing, and use of time. The system we developed around the ACT teams has become the model for how we are looking to collect data on other community mental health agencies that we know will help us tell whether we are making a difference, and also trying to do this in a way that the community agencies themselves can use this data to better their own services.

The Chairman: Is that public data?

Ms. Hayward: That data is probably not public in the sense you are saying it.

The Chairman: The question I was really asking, even on a confidential basis, is if our staff could have a chance to talk to some of your staff about that and get some sense of the trend lines, it would be helpful to us.

Ms. Hayward: Absolutely. I believe the data on the Assertive Community Treatment teams is public.

The Chairman: That would be very useful.

Ms. Hayward: It is fascinating data and we would love to share it with you.

The Chairman: Thank you. Senator Keon.

Senator Keon: First of all, Ms. Hayward, thank you so much for your thorough presentation of what is in place now.

As you know, we will be going across the country, just as this is beginning, and visiting all the provinces and territories by the end of June. Then we have to do our report for a deadline of September, or whatever the chairman says. In that report, I hope we will define a national mental health strategy and process a structural framework for mental health. I am very pleased to hear that so far, we are pretty much in sync with your thinking.

I appreciate the challenges of primary care, but I want to lead you into the system in Ontario from the community development of primary care and associated with the community services, up into the hospital sector and then finally right up to the top into the forensic psychiatry requirements. It is my perception that you have been actively dumping — dumping is not the appropriate word, you have been actively moving — your services from specialty hospitals into the general hospital system, and you have been actively moving your services from hospitals into community services.

From what I know, it seems to me, though, that there is not a synchronized system there. On the one hand, you are planning the LHINs; on the other hand, you are talking about nine mental health programs or at least planning programs, and those numbers I do not think are going to correspond. Maybe I am wrong.

How are you going to retrieve mental health from where it once was, make it part of the overall health system and, of course, couple it with the social services systems at the community level? That is not a very tough question, is it? It would be very helpful to us if you would dare to just walk through it. Nobody is ever going to be right about this but it would be very helpful if you would take a chance — from the community level up through the hospital sector, which I believe is going to be part of the overall hospital sector of Ontario with the exception of maybe the facility in Penetang and perhaps one forensic provincial facility. What is your view of the whole thing?

Ms. Hayward: I will do my best. I think at the community level, quite rightly, people perceive there has been a disconnect between community mental health agencies and physicians practising in solo who do not necessarily have all the resources that they need or the time, especially with their fee for service, to be able to provide the kinds of supports that somebody with mental illness has. That said, I think community agencies have been trying to work with that sector.

As we evolve in the community-health-centre model with a more interdisciplinary approach, I would hazard a guess that people with mental illness have probably fared a little bit better in that system of primary care.

As we move to family health teams as a model in Ontario, we are certainly increasingly focused on an interdisciplinary model of care. We will see there a number of proposals coming in now from communities across the province looking at who is the client population they will serve and how they will serve them. One of the key factors for us is how they are trying to meet clients within their population.

I think one of the key things is that for many GPs, unless they have specialty training in mental illness, it is likely very difficult for them to focus on and to have all the skills they need to meet the needs of that population. Things like depression are perhaps easier to manage. People who have their mental illness very managed may work with GPs more easily but certainly the relationship between GPs and psychiatrists is critical so that people can get to psychiatric services when they need them.

As well, a GP could spend a lot of time to try to find out where the right program is or who provides particular services, which have been fragmented to date. If the GP had a great community network, it worked for them but if they did not, it took a lot of time.

With the new mental health registry in Ontario that I mentioned will be operational in September, a physician who does not know the mental health system very well will be able to pick up the phone and say, what service is available in Campbellford for Mrs. Smith who has a bipolar condition or disorder? That service will be there now to enable physicians to access that.

Ideally, mental health workers and nurses with a psychiatric specialty would be part of family health teams to be able to do more of that care in the community. I think the relationship again between hospitals, between physicians able to refer to hospitals and client care, as well as for the hospitals to be able to refer back to mental health agencies is important.

Last week, your staff member Howard and I were at a Community Mental Health Association office in Scarborough talking. I specifically asked about the relationship between hospital services, community services and the whole approach to discharge planning and supports to ensure that people, particularly from immigrant communities that may have language or other settlement issues, are able to get the support they need.

I think it depends very much right now on the relationships that are formed, and the agreements and protocols that are formed between individual community health agencies and hospitals, whether that system works very well.

The intention with the Local Health Integrated Networks is for regions of Ontario to focus more specifically on those interrelationships and that continuum of care. As I mentioned in Making it Happen, we go from entry-level services to intensive services to specialized service so that continuum crosses between community and hospital.

As you mentioned, a number of people come into difficulty with the law which brings us into the forensic system, and we have a specific report laying out recommendations for that system. We have bed ratios for the number of beds that should be available per population in different parts of Ontario. We have 10 hospitals that deal specifically with forensic issues. We also have recommendations that say that people at relatively low risk in terms of the forensic issues and mental health issues they have can be treated in a Schedule 1 facility and can be integrated with the general population. However, that is about an assessment of risk and whether or not that person can be cared for in a more normalized environment potentially at a general hospital Schedule 1 facility, as opposed to in a forensic bed.

I think certainly some of the issues we face in Ottawa that you would be familiar with in the system are about how we use the system and some of the demand for the system; how we assess people. How do we even decide part of the service enhancement for keeping people with mental illness out of the criminal justice system, the third element of our strategy, which is a $27.5 million component of the $65 million. Its aim is to have quite a few more mental health court workers in the system, and crisis beds as well.

When a police officer encounters someone on the street who is in difficulty or whose family calls because there is disturbance, that police officer will now have new options. Rather than taking somebody to an ER or bringing them to jail, depending on the nature of the disturbance or issues that the person is having, the police will have new options to deal with that client and to help that client rather than pulling them into the court system where we do not believe that they belong.

The mental health court workers, assuming someone is charged with an offence, again, will work with the court system to look at whether that client potentially can be diverted out of the court system. With the right community supports in place, they may be able to stabilize them, and ensure that they get case management and the other assistance they need. It may be housing which is why 500 units of supportive housing are part of the strategy, because those elements are key.

As I said, the issue is the level of risk that a client may present in the community. Not every person with mental illness that commits an offence is going to be eligible to be supported by that particular program. Our intent is to try to reduce demand on our forensic system, working with the courts, and corrections as well when people come out of jails so that there is not recidivism again. We want to make sure that there is enough support for these clients that they may be able to be stabilized in the community and not return to court.

We also have to look at how we are using the forensic beds in the system because they are a relatively scarce resource.

With all of these pieces, there are continuums and multiple levels in terms of primary care from top-to-bottom community to forensic, which are the most specialized services we have.

Senator Keon: Thank you very much. What about the Penetang operation, the last one you were talking about?

Ms. Hayward: The Penetang mental health facility actually has two components. It has an acute mental health service as well as the Oakridge facility, which is the maximum security forensic facility. There are about 140 patients at the Oakridge facility but the balance of the facility is an acute centre.

We are in the process of divesting the last three provincial psychiatric hospitals, with Whitby and North Bay in process now. The last one to be divested will be the Penetang facility, and all the final decisions about how all of that will occur have not yet been made.

Senator Keon: It is unfair to ask you the next question but why not invent the system for us? What will you do to substitute what you have in Penetang?

Ms. Hayward: In which part of Penetang?

Senator Keon: The forensic portion of it.

Ms. Hayward: Right now the ministry is looking at the options for the whole psychiatric system. The forensic system, particularly, is looked at in terms of how to provide care on a regional basis so, at this point, the discussion is there about maintaining that facility. You also want economy of scale in a system because there are only 140 residents at that facility.

The Chairman: What would you say to, our colleagues know this actually, the audience precisely because the issue of the courts and mental issue is such a major issue. I think we commented in our report that in many ways the prisons have become the asylums of the 21st century.

We have tomorrow a day in which we will spend most of the day on that issue. It includes representatives of the police forces in Newfoundland, Saskatchewan and Montreal who deal with mental patients, representatives from organizations such as the John Howard Society and Elizabeth Fry Society who deal with patients and prisoners with mental illness once they come out, two judges from the Ontario Mental Health Court, and judges from the Supreme Court of Ontario who deal with mental health patients.

Tomorrow, we will spend the day looking at the issue of the impact which mentally ill people have on the judicial system and conversely.

Senator Cochrane: Thank you, Ms Hayward. Your budget for the Ministry of Health is how much again?

Ms. Hayward: $30 billion.

Senator Cochrane: That is what I thought. This youth services group coming after you, do they have a special budget or are they part of this $30 billion?

Ms. Hayward: They have a separate budget.

Senator Cochrane: They have a separate budget but do you know how much it is?

Ms. Hayward: No, I do not.

Senator Cochrane: I will ask. You do not deal with youth services at all?

Ms. Hayward: We have youth services that are in hospital. For example, right now we are in the process of transferring children's mental health programs that were associated with hospitals to the new ministry.

In determining which program should go to the new ministry and which could stay, a decision was made to distinguish between inpatient services and outpatient services.

For example, programs that provide assessment, evaluation and therapy in the community but were funded through the hospital will be managed now, or in April, by the Ontario Ministry of Children and Youth Services. However, we did not want to fragment the services provided in the hospital because that is a very specific kind of service that the Ministry of Health has the expertise to manage.

Senator Cochrane: Can you give some idea as to the types of services in the hospital that the Ontario Ministry of Health and Long-term Care deals with?

Ms. Hayward: Children psychiatry, for example: if children need to be admitted to hospital to be stabilized for a particular reason, those children would still be captured within the ministry's budget and would be part of the services provided at hospitals within Ontario. Mostly those services would be hospital-based services.

Senator Cochrane: Do you have any percentage of these types of children, of youth?

Ms. Hayward: I do not have them off the top of my head but, again, some of these questions we might be able to address in the written submission we provide to you.

Senator Cochrane: Let me go to another question. You say you have a relationship with employers. Would you tell us about the relationship you have and how they handle employees who have mental disorders or some sort of stigma attached to them when they come to the work force? Tell us about their work ethic and their periods of work. How do these employers deal with that?

Ms. Hayward: We do not provide those services directly, senator. Those services are provided through agencies that we fund. For example, about $14 million is spent on vocational support programs. Those are agencies that then have money to try to help people with mental illness find a job, or they may work with employers to bring in their clients to work in that environment.

As I mentioned, the Canadian Mental Health Association's Mental Health Works Program is designed to work one-on-one with employers to help them understand mental illness, to train them in terms of how to deal with mental health accommodation issues, and to make them more familiar with the kinds of challenges that an employee might have, as well as things that they can do to work with that particular employee. The ministry does not do that directly. The money we fund goes to an agency that provides that kind of support and assistance to clients, and works directly one-on-one with various employers.

Howard and I saw last week a program at Yamaha where that employer created a cafeteria that employs six people with mental illness, and they have operated that program for 12 years. Making a program that effective takes a very strong relationship between Yamaha and the Canadian Mental Health Association because certainly some of the staff who work in the cafeteria do have issues. They have bad days when they may be going into crisis. They have a job-coach manager that works there who helps to identify for the employer when issues arise. They have a way of dealing with that with the Canadian Mental Health Association as opposed to with the individual employee of the cafeteria.

Senator Cochrane: These programs are working then?

Ms. Hayward: Absolutely.

Senator Cochrane: Do you do an assessment on some of these agencies that you hire because you people dish out the money to these agencies? The bottom line, when the whole program is complete, do you have an assessment of these agencies because some probably are good, some are not so good, some are better and so on?

Ms. Hayward: We have not funded new mental health agencies, or very few, in Ontario for some time, so people and organizations providing these services have been there for a while. Each of those agencies puts together annual operational plans that describe their business, the kinds of services they will provide, how many people they intend to target if it is a job program, and how many employers they intend to work with.

Our regional office staff that I mentioned at the beginning of the presentation would work closely with the agency. If there were concerns about that agency, or how they were doing their work, regional staff would work closely with that agency to achieve improvements.

Senator Cordy: Thank you for all the information you have given us today. I would like to speak, first of all, about services integration, and you spoke about the coordination of services within the health network.

We have often heard that there is a lack of coordination, not just in Ontario, but in other provincial governments with other government departments.

For example, the person who is working at a low-paying job cannot afford to keep the job because they have to pay for medication for their child, or in Ontario for a psychologist or psychiatric help for a family member. They have to leave their job because they cannot afford to care for their family member.

We heard this morning from the lady whose child cannot attend public schools because her child is on the autistic program, which is actually funded by the health department and they cannot have somebody from the health department working in the school system. It does not make any sense to me, looking at it as a former educator; those kinds of things like coordination within government departments, not just within the health department. I wonder if you could explain how that is going.

Ms. Hayward: I think in any bureaucracy that can be difficult, and it takes a lot of effort to ensure that there are those cross-ministerial relationships. There are a number even that I am familiar with in Ontario.

For example, our branch is working with the Ontario Disability Support Program because there are issues about accessibility for people with mental illness who have challenges trying to access that system, or in terms of getting particular benefits.

We are also working with the Ontario Ministry of Municipal Affairs and Housing on the affordable housing strategy, and how to ensure that some of the units they have available through that federal/provincial initiative could be devoted to people with mental illness.

We work closely with the Ontario Ministry of Community and Social Services for people with developmental disability as well as mental health issues.

There is another program that is quite unique. It is called Impact, and involves the Ministry of Community and Social Services, the Ministry of Education, and the Ministry of Health in terms of very, very hard-to-serve clients. This committee has a pool of money that they can use to recommend particular service arrangements to try to ensure that people do not fall through some of the gaps that there can be when their needs cross the domains of various ministries. It is not a perfect system but there are a number of initiatives in place where we are working with one another.

For service enhancements related to the criminal justice system, we are working extremely closely with the Ministry of the Attorney General and the Ministry of Community Safety and Correctional Services, the police and the court system as well as, again, the Ministry of Community and Social Services because there are many people with developmental disabilities and some mental illness issues that come into contact with the law. That particular initiative is not exclusive to people with mental illness but also to people with developmental disability, so there are a number of initiatives in place where there is cross-ministry involvement but it is challenging.

Senator Cordy: Do you look at it case by case? For example, if a case comes to your attention, are you the advocate who gets the departments together? Does somebody have to take a special interest in a case before the barriers are broken between the departments, or is it something that is going to happen?

Ms. Hayward: Some of that happens certainly at the local level first where a family member may call a service agency and try to get assistance from that service agency. Depending on the need, that program consultant may call someone in another ministry and they try to create an intervention at the local level.

The program that I mentioned where the three ministries very formally sit together to deal with individual cases are only cases that have risen to the very top because they are so complex. A lot of that integration, trying to help individual clients, happens at the local level.

If you think of the number of people with mental illness in Ontario, to do one-on-one interventions for every person would be very difficult I think for the government to manage. There are some processes but probably they are not ideal, and not everyone is availed of them.

Senator Cordy: My next question has to do with family support. Probably a year and a half ago the head of the Schizophrenia Society of Ontario appeared before us and told us that 60 per cent of people with schizophrenia go from the hospital to the home. That means the family are playing a major role in, not necessarily the care but the support, of people with, in this case, schizophrenia but I think it would follow true for mental illness overall.

You talked about setting up family self-help groups and we heard this morning some of the frustrations families are going through. Could you perhaps elaborate a little bit on what exactly a family self-help group would do, and who was involved in establishing the parameters for the family self-help group? Was it indeed families or did it come from government?

Ms. Hayward: The programs that are funded in Ontario have evolved I think from family groups or they have come through organizations such as the Schizophrenia Association to establish those. They tend to be small programs but I think the particular support that has been provided to them is in recognition of the fact that they are often the primary care in the truest sense of providing support to family members, but also we see a significant role for families in planning and governance of services.

If I recall, our accountability framework requires community mental health agencies to have consumer survivors or family members of people with mental illness to be part of their governance structures to ensure that those agencies are grounded in the experience of people with mental illness and their family members.

Senator Pepin: I listened carefully to your last answer and this morning we had many families who told us that they were exhausted and they really need support services. I believe you but I am really wondering how you will be able to do that because it seems so important. In your reform, how will you direct that?

Ms. Hayward: In the program that I mentioned in terms of our new initiative, there are three particular components that will be helpful to families. The first is the early intervention in psychosis which is probably the most difficult time of all for families: not knowing where to turn, what particularly might be a diagnosis for their son or daughter, and trying to grapple with children now not being able to finish high school or university or not being able to work. The $4.4 million for that program I think will be of benefit to those family members because it is so focused on catching these issues early on and helping young people, in particular, early on to get the supports they need. That alone may help to reduce some of the stress on families.

As well, the investments in case management and the Assertive Community Treatment teams, those two forms of care, try to ensure that people with mental illness get the other kinds of support they need. It may even be to link a person who is coming out of hospital with supportive housing, if they are old enough to live on their own, rather than go back to a family situation, as a more appropriate way to move forward with their own independence and their own recovery.

Between things like housing and trying to ensure people get vocational and counseling support they need, those services, while they are not directed to families per se, in fact, will help people with mental illness in the system. Hopefully, in turn, those services work with family members and involve them.

With the Assertive Community Treatment teams and the outcome paper that I said we will share with you, when they do their client satisfaction surveys, they do a separate survey of family members to see whether family members are satisfied with the services that their sons and daughters are receiving.

Senator Pepin: When are you planning that those beautiful services would be available here?

Ms. Hayward: The funding for these particular four services, the ones I just mentioned, as well as crisis response, was distributed around September 2004. Most of the agencies who received the equivalent of about $30 million annualized, all the staff for those agencies are being hired right now, and are in place.

Senator Pepin: So, it should work soon?

Ms. Hayward: It should. We should see some change soon. The program that relates to correctional services and the criminal justice system is not quite out the door yet but the others are.

Senator Pepin: Does the OHIP formula include all kinds of mental sickness such as autism, bulimia and anorexia? Does it mean that it is covered by OHIP?

Ms. Hayward: I am not as familiar with autism services because those have traditionally been funded by the Ontario Ministry of Community and Social Services and now by the new Ontario Ministry of Children and Youth Services.

With respect to bulimia and anorexia, a general practitioner who was treating a young woman with that condition would certainly bill OHIP for the services that he or she provides.

As well, if that young person is hospitalized, that would be part of the expenditures that I mentioned for mental health in the $3 billion because there are both inpatient and outpatient programs for people with anorexia and bulimia.

Senator Pepin: Autism seems to be a very specific problem. It seems not to have much help. Money-wise it is quite expensive and many families cannot afford the care that those children or those persons in their family need.

Ms. Hayward: I can alert the people that will present to you or send a submission from that ministry that autism is an area of interest that you have.

Senator Pepin: I think this is very important. This is my last question. You mentioned the publicity campaign regarding mental health, and that it was not successful. I am wondering how come, because this morning someone told us that they had a big survey to find out that more than 80 per cent of the Ontario population were really supportive of mental health, and that the government should do something about it.

Ms. Hayward: The report that I mentioned was a research study from another country where they did a significant assessment.

Senator Pepin: It was not from here.

Ms. Hayward: It was not from here. The point that we were making is that perhaps what is more ideal would be to target the campaigns. Rather than one campaign for everybody in the country, we may want to focus more specifically on employers, young people or particular aspects of the system, as opposed to trying to reach all the public all the same way.

Senator Trenholme Counsell: Thank you, chair, colleagues, and Ms Hayward. This has been very important for us because, of course, we are from the Government of Canada and you are from the government of a province. Throughout this whole thing — I am quite new to it — I wondered how we can, from the Government of Canada, have an impact when really this is provincial jurisdiction.

You mentioned a number of areas where we could have an impact through this Senate report: research data, income, housing and employment. You have also given us an excellent point where you suggest targeted campaigns towards youth, et cetera. You mentioned also the First Ministers’ Health Accord.

What general advice do you have or how much optimism you have for a report such as this, given perhaps the present state of federal/provincial relationships in health?

Also, could you reflect very briefly on your relationship with the federal government, the federal department of health, and your own work; whether there is much interplay between the two levels of government in terms of mental health issues?

If you could elaborate a little more on what you think the impact of this can be and give us advice as to how, ultimately, it could be most effective in terms of the nation as you see it from the point of view of a provincial chair, provincial director.

Ms. Hayward: I think there is tremendous potential for the work of the committee. The fact alone that you have undertaken this particular study, as I mentioned in the beginning, in terms of the consultation and the attention that you are bringing to mental health, mental illness and addiction is critical.

Many people have said to me since I joined the ministry in this role that mental health is sometimes the orphan of the system. I have a significant amount of optimism at least from Ontario — with what is going on in other provinces I am less familiar. The fact that our government has recently committed a significant amount of resources to mental health services I think is a signal in terms of its commitment to this aspect of the health sector and to the needs of people with mental illness and addiction.

I think there are always challenges for federal/provincial/territorial relations in terms of roles and responsibilities, but there certainly are areas where the federal government has long-standing roles, and that presents opportunities.

The area of affordable housing, that there is already work going on between the Government of Canada and the Government of Ontario, is important. The work of Human Resources and Skills Development Canada and the potential for employment is important. The fact that on Aboriginal issues right now there are significant discussions happening at the federal/provincial territorial tables around Aboriginal health is important. Efforts at both levels of government have again significant potential to be combined, at least in Ontario, with our own investments and the Aboriginal healing and wellness strategy that has strived to create a new approach to those issues that Aboriginal communities face in terms of research and the work and data. Especially as we increasingly invest in community services with that transition in the ratio, there is so much we need to learn about the effectiveness of community mental health services and what approaches work best so that we can implement best practices in all the agencies we have.

The fact that you are bringing attention to these issues is really important. I think the tougher discussions are between the federal finance ministers potentially.

The Chairman: I do not know if that is an optimistic or pessimistic note to end on, but having been part of it over the years, it can be both from time to time.

Ms. Hayward, thank you very much for coming, particularly given the short time you have been in your job. We appreciate it, and we look forward to receiving your written submission.

We now have with us Becky McFarlane, who is with the Ontario Council of Alternative Businesses. I will tell you, Ms. McFarlane, we heard very good reports about your program this morning from some of the other witnesses.

We also have with us Jennifer Chambers, Coordinator for the Empowerment Council for Patients and Co-Chair of the Mental Health Legal Advocacy Coalition.

We then have three members of The Dream Team, and they will explain later on what The Dream Team is. However, they are not the basketball team that everybody originally thought they were.

Thank you all for coming. You want to begin in a different order.

Mr. Dufresne, can you begin at the outset by telling us what The Dream Team is and then proceed with your presentation?

Mr. Phillip Dufresne, Member, The Dream Team: Thank you. I used to live on the street and now I am a member of The Dream Team which is a project that was created by the boards for Mental Health Services and Housing Services back in 1999. The boards for Mental Health Services and Housing Services and The Dream Team represent 24 mental health and housing agencies that support 7,000 people and provide safe, affordable housing to over 2,600 people in Toronto.

There are currently 20 members on The Dream Team; 17 of us live with mental health issues in supportive housing. We have a couple of family members and also a community board member of a supportive housing organization.

We demonstrate the life-altering benefits of supportive housing by telling our stories to politicians at the various levels of government, social service agencies, service clubs, high school and university students, consumer groups and other institutions. Through our efforts we strive to have more supportive housing available in Ontario for people living with mental illness.

Our goals are to promote understanding and acceptance of people living with mental illness and also to make it possible for people living with mental illness to achieve the fullest sense of self-worth and participation in society by ensuring safe, secure, affordable and supportive housing.

We achieve these goals by validating the life stories of psychiatric consumer survivors, which are people living with mental illness, and by ensuring that in our organization, decisions are consumer-driven, consumer-motivated and consumer-centred.

Each of us gives a three or four minute speech talking about how supportive housing has saved our life or the life of a family member. 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. Statistics have also shown that we are no more violent than anybody else. It is just more sensationalized by society.

Now I would like to introduce Mr. Shapiro. He will speak first, then Ms. Chamberlain, and then I will finish off.

Mr. Mark Shapiro, Member, The Dream Team: How many on the commission are psychiatric consumer survivors?

The Chairman: The majority of us have members of our family.

Mr. Shapiro: Okay. I am a parent and a Habitat services board member. 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. Rochelle Goldman of the Chai Tikvah Foundation opened that door. Habitat Services and the Canadian Occupational Therapy Association, COTA, organization provided the essentials for Kenny's daily living tab. This major support led Kenny to get a job, have his own apartment subsidized by Chai Tikvah, take his own medication and be responsible for the essentials of his daily life.

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.

As a parent I give heartfelt thanks to the government sources and at the same time ask for their continued support.

Just to quote here from Michael Wilson in who was vice-chair of the Provincial Mental Health Implementation Task Force Forum. Supportive housing ”is the cornerstone in the foundation to recovery. Without it, the emergency wards, the jails and the streets become the default options.“

Ms. Linda Chamberlain, Member, The Dream Team: I wonder if I could stand up. I have ants in my pants. Hello, I am a person living with paranoid schizophrenia, bipolar disorder, alcohol addiction.

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. 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. Believe me, it was no life. I felt like a zombie and I was just going through the motions trying to survive, with no sense of self-esteem, self-respect, dignity, purpose or hope.

Then my life changed when I became involved in a program called Progress Place, a rehabilitation centre that gave me many opportunities and chances for self-growth. One of the best things that ever happened to me was the opportunity they gave me to move into mainstay housing. For the first time in my life I felt safe, I had support, and it was affordable.

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.

The most striking change to my life has been the privacy, peace, quiet and cleanliness: the space, why I am talking huge, my own apartment with a balcony. This has changed my attitude, dramatically affecting all parts of my life. I have worked several part-time jobs. I just finished being on the board of directors of Mainstay Housing. I am on the board of the Empowerment Council (Client Council) and a voice for clients' rights at the Centre for Addiction and Mental Health. I have done consultations through Progress Place training and have visited other programs, which has taken me across Canada, United States and abroad. I now recognize my rights as a person and as a tenant, and advocate for myself and others. My confidence is growing. Is it ever nice to be able to stand up for myself and say ”no.“ 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. Thank you.

Mr. Dufresne: Well, thanks, Linda. I have the unenviable task of following Linda and that is not an easy thing to do, but as you can see, The Dream Team members all have different stories. The bottom line is that none of us would be alive today without supportive housing, and I cannot stress enough that housing is the most basic of all human rights. None of us would be alive today without it. All three levels of government must be involved in creating more supportive housing. The homeless and mentally ill should not have less rights than everybody else just because they have less money.

I would like to tell you briefly about some of the things that we have done. We have taken our stories and messages to over 9,000 people. At our first annual fundraising concert two years ago, we launched a postcard campaign. The postcards were addressed to then-Premier Ernie Eves asking him to create more supportive housing. Opposition MPPs George Smitherman and Marilyn Churley presented the postcards to the legislature and backed our call for more supportive housing.

Now we have launched another campaign to get the current provincial Liberal government to keep its promise of providing 6,600 units of supportive housing. I have postcards with me and we are giving them out for all of you to sign.

The Dream Team also acquired party status at an Ontario Municipal Board hearing regarding a second St. Jude supportive housing project. Although the community council and Toronto City Council had given St. Jude permission to proceed with this project in the Dundas and Parliament area, a neighbourhood ratepayers group opposed the development and appealed to the Ontario Municipal Board.

A human rights lawyer representing The Dream Team warned the ratepayers that the purpose of the Ontario Municipal Board hearing was to discuss planning and zoning issues around the building and not the type of people who might be living in it. She also indicated that any discriminatory remarks about the people who might live there would result in a human rights case being filed against them.

As a result of The Dream Team participation, St. Jude won its case and all the ratepayers' concerns were dismissed. This was a precedent-setting case because it was the first time that NIMBYism has ever been challenged on a human rights ground. I believe that other supportive housing agencies will now use the strategy more and more often in the future.

We have also developed a train-the-trainer model to a help other consumer groups in creating their own organizations similar to The Dream Team. Last year we helped a group in Waterloo start up its own Dream Team which they call WISH, Waterloo Initiative for Supportive Housing.

The Dream Team has also produced a video of its work which we are happy to share with you. We also have a website which is www.thedreamteam.ca. Our organization runs on an empowerment model. All our decisions are made by consumers who are the majority of the members. Currently, we have two part-time staff to support our work. We are constantly looking for funding to ensure that we can continue the work we do. Just coming here making a presentation to your commission is an expense. Consumer initiatives like ours should be able to find permanent funding.

The Dream Team won the 2002 Ontario Non-Profit Housing Association Tenant Achievement Award for its work in the non-profit housing sector. Many of our members have also won individual awards for their volunteer work, but none of this would have been possible if we did not have supportive housing to begin with.

The reason why we call ourselves The Dream Team is because to us supportive housing is truly a dream-come-true, and we want our dream for safe, secure housing to be a reality for everyone.

In conclusion, I want to emphasize the importance of supportive housing as an essential component of the recovery process. As we demonstrate through our work, once people who live with mental illness find supportive housing, they are able to contribute to society and rebuild their lives. Thank you for having us here today.

The Chairman: May I thank all three of you for coming. Can I just ask a timing question? Do you have to leave in a hurry or can you stay for a bit?

Mr. Dufresne: We can stay.

The Chairman: Okay, good. I was under the impression from something Ms. McFarlane said that maybe you could not. Normally, what I would do is hear from the rest of the panel and we would ask everybody questions at the same time. Ms. McFarlane, over to you then.

Ms. Becky McFarlane, Partnership Coordinator, Ontario Council of Alternative Businesses: I think Diana and Pat Capponi both spoke this morning and spoke to some of the alternative businesses that exist here in Toronto.

OCAB is an organization that is committed to creating employment —

The Chairman: OCAB is?

Ms. McFarlane: The Ontario Council of Alternative Businesses is an organization that is committed to creating employment opportunities for psychiatric survivors through the development of survivor-run businesses. Currently, OCAB owns and operates four alternative businesses, three of which are in Toronto and one of which is in Peterborough, Ontario.

The Raging Spoon is a catering company and restaurant that is located downtown, and it provides employment opportunities to about 20 individuals.

Out of this World Café and Espresso Bar is a canteen and espresso bar that is operated out of the Centre for Addiction and Mental Health, Queen Street site, and provides employment to approximately 30 individuals. It is important to note that Out of this World Café was a vocational rehabilitation program that was being run by the Centre for Addiction and Mental Health, and almost three years ago they divested it to our organization to be run as an alternative business.

Parkdale Green Thumb Enterprises, which is a landscaping business in Parkdale here in Toronto does a lot of streetscaping for local business improvement associations. They do all the plant maintenance, I think, for business improvement associations now in Toronto and provide opportunities to upwards of 40 survivors.

Then Crazy Cooks Catering, which is a catering company in Peterborough, provides employment opportunities for almost 20 individuals.

It is our experience and certainly not a shock to report that employment or the ability to have a job is an integral part to a person's being whether they are survivor or not. OCAB has had much success with the alternative business model. The individuals working within the business have had much success as employees and as contributors to a community and to an economy. There are a million things I could say to you this afternoon and it was very difficult for me to try to narrow it down to five to seven minutes so I am going to highlight a few things.

One of the things I want to highlight is that there is a major challenge that we face when it comes to providing employment to the survivor community and that is the maximum allowable earnings of Ontario Disability Support Program, ODSP. If someone is on ODSP, Ontario Works, OW, or welfare, the maximum amount they are allowed to make before their benefits are clawed back on ODSP is $160 and on OW is $143.

The Chairman: Sorry, per week?

Ms. McFarlane: Per month. If individuals make more than $160 in a month and they are on benefits, with ODSP the maximum you can get is $930 a month, and with Ontario Works the maximum you can get is $520 a month, if you are an individual. You can make $160 a month so we will just talk about ODSP. Ontario Works is a bit less. After $160 a month, the government takes 75 cents on every dollar you earn.

There are a lot of reasons why people are hesitant to work above the $160. Part of it is that there is really not a lot of incentive to work when money is being clawed back, but a bigger reason, I think, that people do not want to make above the $160 is simply because you get into a whole bureaucracy. If, in one month you make more than $160, they take money off your cheque. If the next month you do not, sometimes they put your cheque on hold because they think perhaps you did not report as much, and there is this whole process where people get caught up in the system. Most people who work within our businesses say we do not want to make above $160 per month. It makes it very difficult to get people who want to work full-time into full-time jobs. I think for people who have medication costs and health care costs, to go off ODSP and risk losing their drug benefit card to get a job that pays $10 an hour or minimum wage — which is $7.40 I think right now, it just went up — is impossible. Again, people get trapped. They get stuck. People want to work but there are barriers that prevent people from working.

Another issue is that OCAB has had a lot of trouble maintaining funding. Everybody hails the alternative business model as a best practice. Each business probably has a waiting list of 150 to 200 people, at any given time, who want to work. Trying to get funding to create new opportunities and even trying to get funding to maintain what we have is a problem.

Right now we are in a situation where at the end of March one of our businesses is in jeopardy of closing down because there has been no commitment of annualized funding to continue. We are looking at layoffs at another business because money is not available to continue with those positions. It is hailed as a best practice but trying to find funding is difficult.

The last thing too is I want to say it is very frustrating when you have hundreds of people calling and coming to the door wanting work and there are no opportunities that exist for people.

In the most recent report on the needs of specific population groups, you have listed a number of groups: children, adolescents, Aboriginal peoples, people with complex needs and seniors.

I wanted to recommend that you add another category that you could simply call, poor people. For too long there has been, in my opinion, a blind ignorance when it comes to acknowledging the poverty that our community continues to experience. It is absolutely impossible to deal with the question of system reform without dealing with the broader issues that contribute to its failures. I would argue that the experience of poverty and hopelessness is one of the major contributing factors to the poor mental health of many, and I would go so far as to say the majority, of our community. I think you have heard some stories already, and the issue of poverty comes up again and again. I could sit here all afternoon and tell you stories of people, a number of whom, perhaps, were laid off from their jobs. Most people, who are not much more than a paycheque or two away from having nothing, end up losing their job and end up in substandard housing. That experience is depressing.

I am working with a woman right now who had a $50,000 a year job, was laid off at the age of 50, ended up living in a bachelor apartment in Parkdale, got depressed, was hospitalized, got out of hospital, and was told you probably will never work. She is currently caught up in the ODSP system trying to get ODSP benefits, is living on welfare, and people are telling her, do not work. There is probably no chance that you are going back to work. You are too sick. She is buying into that. That is something that we see over and over again; zero expectations of people in our community.

My point here is not to refute the existence of mental illness or to suggest that the impact of poverty is the only thing to be considered, but it is undeniably huge and is going to have to be dealt with if there is ever going to be a system that works.

Adequate housing, access to nutritious and affordable food, links to quality primary health care, meaningful employment, and links to a community are all essential to a person's mental health. If a person's basic human needs are not being met, it is ridiculous to think that there is anything the mental health system can do that will be helpful. When you have no home, no food and no hope, a more humane system is not going to make much of a difference.

I think when we look at system reform, there needs to be an understanding that perhaps we can make it better for future users and learn from past mistakes, but I also want to be clear that there are a number of people who have been horribly damaged by the system in the past. As the system changes, people who have been damaged by the system in the past are not necessarily going to jump up and trust that the system is better. I think we need to remember, regardless of whether people are interacting with the mental health system because there are many survivors who are not now and who have no interest in doing so, that their needs as well are met.

Our community has been devastated. The impact of long-term institutionalization, poverty, the side effects of medications and hopelessness, again, has created a darkness in which we move and we live. I think getting up each day and seeing it through is an act of courage that most could barely comprehend, not just because of living substandardly, living with hunger, and living with the effects of medication; not only because of those things but because the way society looks at us is wrought with judgment, discrimination, anger and at times hatred.

I read all your biographies before I came here and was, of course, struck by the leadership that I think you have all displayed. I wanted to point out that there is another group of leaders in this room and they are the leaders that you are hearing from today.

This morning you heard from Diana and Pat Capponi who both continue to be leaders in a community that is starved for leadership. I am sitting here in a panel with individuals who are leading a struggle to change the conditions in which we live and love. You heard from family members who are clearly fighting passionately for change and it is an honour to be sitting here and talking to you with the other people that have been talking today and will be talking, I know, over the next couple of days.

I wanted to talk a bit about expectations. As a community, we have been told to expect nothing of ourselves, and as a youth who was interacting with the system, I was similarly told to expect nothing of myself.

I think it is really important to realize that, unless you put expectations on people, they will not rise to meet those expectations. I think it was someone who was speaking earlier from the Ontario Ministry of Health and Long-term Care who was talking about a vocational rehabilitation program where there was on-site job coaching and people available if a crisis were to come up. I wanted to say proudly that in the businesses we own and operate, there are no job coaches on site and there have been no crises to deal with. We set very high expectations of the employees in the businesses and they meet those challenges. If you raise the bar, people will meet it. You cannot set it low because if you set it low, people will not rise above it, or some people will not rise above it. I think it is not fair to do that. We need to expect a lot.

Helen Hook spoke this morning about the need to build peer support within the system and I wanted to support that recommendation, but I want to be clear that these opportunities cannot be token ones. They deserve to be paid positions and paid at a wage that is a life-worth-living wage; not a living wage, a life-worth-living wage. Again, paying people $8, $9 or $10 an hour is not enough for them to meet their basic needs, particularly in Toronto where the cost of a bachelor apartment is more than what you get in a month from welfare.

The system is not some monolithic machine that every so often needs to be tweaked, repaired or replaced. The system is made up of individuals and I think that we all need to take responsibility.

It feels very strange for me to sit here and try to speak to you about the conditions that we live in. I believe there is not a writer or artist who could write or paint that story or these stories. The words that I offer are a pale representation. I sit here in this beautiful room and extend to you an invitation to come and walk with me in my world, to tour the businesses and to meet the leaders and developing leaders of my community. As I said, there are three here in Toronto and one in Peterborough. I extend this invitation for two reasons. The first is because to understand, you must see firsthand what is happening on the ground. Number two is, if we truly are going to make changes to the system, we will need to work together; you as obvious leaders, and we as not-so-obvious but equally powerful leaders. I cannot promise people will not be angry, will trust your motivations or trust that you understand. We cannot expect that change or trust will happen overnight but, as leaders, I think we all know that leadership is not easy, that we will not always be accepted or respected, but we lead regardless because it is not easy, it is a challenge, and it must be done. This is sincerely a humble invitation, a heartfelt invitation and perhaps even a risky invitation but a worthwhile risk. I thank all of you for the opportunity to speak here today and I look forward to better days to come.

The Chairman: Thank you, Ms. McFarlane. Our last speaker before we turn to questions is Jennifer Chambers, who is the coordinator of the Empowerment Council, which is in some way associated with the Centre for Addiction and Mental Health but I am not quite sure how.

Ms. Jennifer Chambers, Coordinator, Empowerment Council (Client Council): The Empowerment Council is an independent, member-run organization consisting entirely of people who are psychiatric consumers, survivors and people with addictions. We are located at the Centre for Addiction and Mental Health and funded by the centre, but we take our direction from our membership.

The Chairman: You are independent from the centre although that is where you are funded from and that is really who you deal with in large measure.

Ms. Chambers: That's right.

The Chairman: Thank you.

Ms. Chambers: We are an advocacy organization. We conduct systemic advocacy primarily on behalf of the 20,000 clients for the Centre for Addiction and Mental Health.

Advocacy means our people having a voice in matters that affect us, as long as the voice that is heard is indeed our voice and no one else's. Most often we are silenced by social exclusion and drowned out by voices that claim to speak for us. By speaking to you in this forum, we are trying once again to achieve our basic human rights and necessities of life; to persuade you that we want our self-defined needs met, not our needs according to those that are claimed to be ours by others.

By the way, let me encourage you to read the paper that we submitted because I am a little more articulate in print than I am in speaking, and it is not as cumbersome as it may appear. Most of it is attachments for the convenience of your research staff — appendices.

We appreciate the effort made to include a greater proportion of our community in this forum than in the earlier consultations, yet we are still a minority in discussions about our own lives, which is, in part, a reflection of the fact that we are excluded from power throughout most of the mental health system in Canada.

The word ”advocacy“ means to give voice to. Clearly, we need better opportunities to be heard in all matters that affect us because we have much to say. Our voice should not be confused with anyone else's voice. Our interests are not the same as those of families or service providers, although they may overlap at times but that is for us to say.

On behalf of organizations of psychiatric survivors and people with addictions, we have been involved in numerous court cases. I facilitated our intervention in four Supreme Court cases and three inquests which were remarkably successful in having our rights respected under the Canadian Charter of Rights and Freedoms.

However, the need to have our rights acquired in this fashion is time-consuming, piecemeal and often counteracted by the tremendous efforts made by service providers to thwart the meaning of the Supreme Court of Canada's rulings.

Ongoing advocacy is needed with a coordinated national strategy. As noted by McCubbin and Cohen in The Rights of Users in the Mental Health System: the Tight Knot of Power, Law and Ethics, ”rights are not protected because they are rights, they are rights because they are protected.“ They observe that the very term ”right“ is today being distorted by rights opponents by applying such terms as ”right to treatment“ and justifying more force treatment.

Even the legal system itself systematically excludes most psychiatric consumers and survivors from access to real justice. The Mental Health Legal Advocacy Coalition you will be hearing from tomorrow through Randy Pritchard. This group, and to some extent the Empowerment Council, have conducted the only Canada-wide survey that has ever taken place asking people in the forensic mental health system what they think of the forensic mental health system. It is shocking that this has never taken place before.

Right now there is an inquest being conducted in North Bay about a man who hung himself in the forensic system. He hung himself after many years of being in the system, with no apparent hope of release, for an incident that might have resulted in no jail time at all. There is a desperate need for more advocacy in the mental health system.

Consistent, organized education and pressure must be brought to bear to make the judicial system a just one for most psychiatric survivors. This requires the expertise of a national mental health and addiction legal advocacy organization controlled by psychiatric survivors and people with addictions.

I will talk a little about why our lives depend on real advocacy. One of the attachments in our submission shows you the extent of the problem of violence against persons with disabilities, and in that attachment you will see particularly the high percentage of abuse suffered by people who have been in the psychiatric system.

To examine the extent of the problem of violence facing people with disabilities, the Roeher Institute has conducted numerous studies. Overall, there is a pattern of inconsistent response to the victimization of persons with disability. There is a prevailing sense that justice is not being served.

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 shows 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.

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. My outrage about this is why I do the work that I do.

A redistribution of power and real advocacy is required in the mental health system. We go into it in some more detail in the second appendix to our submission in which we describe what is needed in psychiatric facilities.

Since that article was written, the Empowerment Council and the Centre for Addiction and Mental Health have created a bill of client rights for clients of this centre. To the best of our ability to determine, it is the most powerful bill of its kind in Canada and we recommend that it be spread to different psychiatric facilities. The only reason that this bill was able to be created was because the centre adopted a policy of support for an independent client voice at the centre, which is us. Only with that kind of independence can people speak strongly for their communities. To support advocacy you have to support real advocacy.

The Ontario Advocacy Commission, a brief but admirable centre of advocacy, controlled by people with disabilities described advocacy as, ”At its most powerful, it's a way to help people ‘own’ their own lives.“ They go on to note that, ”Unlike most health care or social services, advocacy is directed by the vulnerable person.“

In Ontario we have the Psychiatric Patient Advocate Office which delivers individual advocacy at the client's direction. It has an arm's length relationship from the ministry, and is not directly controlled by the hospital at which it is located. However, its independence has been somewhat compromised through the divestment process. As well, the ministry used to instruct provincial psychiatric hospitals to have patient advocates on site. It is now up to each hospital, as they are divested, to decide whether or not they want the advocates there. Their need to apply, therefore, for the job compromises their independence somewhat.

The same thing happened to patient councils across the province. When the ministry directly controlled provincial psychiatric hospitals, they were required to fund independent patient councils that took direction from their membership. With divestment, a number of hospitals immediately stripped the councils of their funding and staff.

For the commission, advocacy was said to be founded on two key principles: independence and trust. An advocate must be independent and free from real or perceived conflict. An advocate must be trusted to represent the interests of the vulnerable person and only the interests of the vulnerable person.

I want to conclude with our recommendations. I recommend a national mental health legal advocacy organization. Accountability means requiring the mental health system to comply with the law. Psychiatric consumers, survivors and people with addictions need a national and legal advocacy organization to address violations of our rights both under and outside the law. This organization must be accountable to the community it is meant to serve and to this community alone.

Avoidance of actual and perceived conflicts of interests requires that this organization also exist for the purpose of advocacy and only advocacy. Organizations that claim to deliver advocacy while providing other services have an obvious bias in favour of the service they deliver which tarnishes their credibility.

A federally funded national mental health legal advocacy organization is required in order to: avoid all the duplication of effort and legal advocacy across the country and to support local advocates; bring some level of scrutiny to Canada-wide mental health legislation and its various degrees of compliance with the Canadian Charter of Rights and Freedoms in each province and there is quite a bit of disparity; eliminate the conflict of interest of provinces funding a body that will challenge the provincial mental health legislation and provincially funded health care services; minimize disparity in attention to mental health systems by advocates across the country; and articulate the consumer and survivor voice in mental health advocacy across the provinces and territories. Such an organization can also serve as a clearinghouse for information needed by advocates across the country.

This advocacy organization could conduct test-case litigation and policy analysis so provincial advocates need not reinvent the case every time their government considers new legislation. This need to recreate advocacy, for instance, has been travelling around the country province by province as each provincial government considers introducing community treatment orders.

It would also have the ability to analyze relevant social science and medical literature. One of the repeated requirements of our involvement in interventions in court cases is the supplying and analysis of social science and research literature but it is not enough to have our rights across the country affected by the chance nature of our intervention and research abilities in a few cases. Its guiding principles would be the advancement of citizenship rights, equality and self-determination for all people identified under the Charter as having, or being perceived as having, mental disability.

This committee might care to examine the U.S. model of the Bazelon Centre for Mental Health Law as an example of such an organization. In our submission, we give you a website you can conveniently check out. This organization might also assist with the creation of a national bill of patient rights.

Brief response to some of the questions in your report: We previously submitted the Empowerment Council's recommendation priorities to the committee which possibly you did not receive because we did not see them listed. Who knows what technical abyss they might have fallen into so we attached them also to the end of our submission.

We support the creation of personal health care plans. We believe that only through our control of the money and the way that services are directed will the mental health system ever undergo any fundamental change.

We recommend you might want to investigate the Centre for the Independent Living, which manages similar things in Ontario for people with physical disabilities.

However, care plans are not going to apply to everyone and there must be genuine choice through real alternatives to the present system to be a meaningful choice for people to access.

No government or health service should approve policies affecting our community without consultation with our community. We, therefore, support the proposal of an advisory committee to the federal and each provincial government in order to facilitate a patient-oriented system, providing this committee contains a majority of our community members and our chosen advocates, the most relevant participants in creating a new and better alternative to the system.

Before drafting your final report, we also propose that this standing Senate committee call an advisory panel of psychiatric consumers, survivors and people with addictions to provide a sense of the real life impact of the recommendations that the committee will be considering. We need this Senate committee to rise above the political pandering to prejudice that prevails in legislatures. For an example of this, you might look at our discussions around the victim impact statements in Bill C-10: An Act to Amend the Criminal Code (Mental Disorder) and to Make Consequential Amendments to Other Acts. I understand they may or may not come before you when we address it with the legislature.

As a result of not hearing from us to any significant degree, reports often reflect biases of the narrow group of presenters. The reports from this Senate committee, for example, could not contain the danger that psychiatric medications can pose because most of the presenters would be unlikely to present that information. There is no indication, for example, of the considerable research evidence showing the high incidence of brain damage and increased mortality from the use of psychiatric medications. What is described are the dangers of not being medicated. The dangers of being medicated have been missed entirely. The dangers of ACT teams, the likelihood that they can increase people's isolation and, therefore, increase people's suicidal tendencies also have not been attended to, and the enormous and serious rights violations in the forensic population. I do not think you have considered the forensic system much at all yet. In one of the submissions you will receive tomorrow, a survey of people in that system will be attached.

I am going to conclude with a quotation from McCubbin and Cohen, A Systematic and Value-Based Approach to Strategic Reform of the Mental Health System:

It is crucial to consider who has power in the formulation of mental health policy. Traditionally, consumers of mental health services have been perceived as the objects, rather than agents, of policy. A redistribution of power is necessary on the grounds of therapeutic benefit/empowerment, ‘but also due to the very pragmatic reason that the objectives of a reform will best be met in the long run by placing control of the shaping of the reform in the hands of those whose interests are most consistent with the reform objectives.’

The Chairman: I thank all of you for making your presentations. Can I begin by asking the question to The Dream Team? Phillip, I will ask you but if either Linda or Mark want to comment, that is fine.

Take us through two things: How is supportive housing construction funded and how are ongoing operating expenses funded?

Mr. Dufresne: The supportive housing organization I live in gets most of its funding from the ministry of health.

The Chairman: From the Ministry of Health and Long-Term Care, not the Ministry of Community and Social Services?

Mr. Dufresne: No. I think maybe some agencies might get funding from the Ministry of Community and Social Services but our organization gets funding from the Ministry of Health and Long-Term Care. We also used to get funding from the Ministry of Housing too but the funding was transferred over to the Ministry of Health with the last government.

The Chairman: How is your rent set? Do you pay rent?

Mr. Dufresne: Yes, I do. It is rent geared to income and I live on Ontario Disability Benefits.

The Chairman: So, it is rent geared to income.

Mr. Dufresne: Right.

The Chairman: Do you know who paid the cost of building the units in the first place?

Mr. Dufresne: Who paid the cost of?

The Chairman: Of actually constructing the building. Is that a federal/provincial program of some kind?

Mr. Dufresne: It is provincial. We get practically all our money from the provincial government but lately, in the last few years, we have been acquiring new buildings. All our buildings are funded differently. It is hard for me to explain exactly how this works but pretty well all our funding comes from the Ministry of Health and Long-Term Care.

The Chairman: Becky, someone said to us this morning that your model of alternative services is not being used in any other province. To the best of your knowledge, is that correct?

Ms. McFarlane: The consumer, survivor-run businesses are unique to Ontario. I think there has been some attempt to replicate them in other provinces, and certainly there has been interest from other countries as well. I think part of it is, again, lack of resources. There is an expense associated with developing. Usually the development of a business takes anywhere from two, three to four years because, again, survivors develop, or part of the development process is not imposed from somewhere else. I think resources is probably the biggest reason.

The Chairman: I understand obviously there is a cost to getting it started. There is a cost to starting any business but once it is up and running, I presume, because people are being paid and so on, actual costs decrease.

Ms. McFarlane: They do.

The Chairman: Am I right on that?

Ms. McFarlane: You are. There is always a cost associated with running any of our businesses, and for all the OCAB businesses, the revenues pay for all the hourly staff wages. Revenues pay for food purchases, capital expenses, and then we get funding for salaried staff positions. There are usually two or three salaried staff working full-time within each business, and rent, which is also funded.

It does not take a lot of money but it appears that there is not a lot of money. We put requests in and —

The Chairman: Nothing happens.

Ms. McFarlane: That is right.

Senator Cochrane: First of all, I want to direct my question to The Dream Team. It is a wonderful story and you really have come a long way. I realize the necessity for housing in Ontario. How does one go about getting into a housing unit like yours?

Ms. Chamberlain: That is the whole problem. We do not have enough housing. Most times there is a waiting list of 10 years. Sometimes, some of us have taken five years to get in. That is why need more housing. There is just not enough built. To build supportive housing, even after you go through the NIMBY issues and all that, takes another five years to build so we need housing now.

Senator Cochrane: Go ahead, Phillip.

Mr. Dufresne: Maybe I can expand on that a bit. Most people who live in supportive housing were also referred by either social workers or health care workers.

When I was living on the street I didn't know anybody at all but I had to develop a relationship with a social worker, and it was that social worker that helped me get into supportive housing.

Senator Cochrane: When you are in this unit, do the people that own or live in these units have control over, say, what is happening? Is there a caretaker there, in particular, who looks after the unit itself? Do people that live there look after it?

Mr. Dufresne: People who live in supportive housing live independently. Each of us is assigned a support worker that we could go to whenever we need help. The support workers could help us get on social assistance. They could help us with résumés if we want to go looking for a job. They could help us with doctor and dentist appointments or day-to-day activities if we are not feeling well, but for the most part, we live independently. We do our own cooking, cleaning, grocery shopping and that. Most of us do not have 24-hour support.

Senator Cochrane: But you have a live-in superintendent, do you?

Mr. Dufresne: Not in all buildings: In my building there is no live-in superintendent, no.

Senator Cochrane: I think Mark has something.

Mr. Shapiro: My son lives in supportive housing but it is a rent supplement. Chai Tikvah, the organization which subsidizes his apartment, is an agency that provides the same type of service that Phillip talks about. The agency has four apartments in a building which houses probably 300 or 400 people. He has his own apartment. The support services are there but he lives totally independently, and there is nobody on the premises except for a superintendent that takes care of the whole building.

Senator Cochrane: Okay.

Ms. Chamberlain: I think there are different types of housing. Some have 24 hour support as needed, and then there are some that do not need support. There is always a housing worker there for the building when we live independently, and there are other types of supports for other people, so it is individualized.

Mr. Shapiro: Can I say one thing: There are 2,600 people living in this type of housing in Toronto.

Senator Cochrane: This is where your son lives?

Mr. Shapiro: He is one of the people. That is supportive housing: Rent supplement programs where they supplement the rent in other housing, in housing that Linda and Phillip live where the support agencies own that housing. There are another 950 psychiatric consumer survivors living in roughly 48 boarding homes that go under the umbrella of Habitat Services. These are privately owned by private boarding house owners, and Habitat provides a per diem supplement to the owners to provide care and food for these people, and they have to follow certain standards. If they do not maintain the standards, they lose some of that funding. This is the way we try to increase the standards, or Habitat tries to increase the standards.

Senator Cochrane: This is like room and board, is it?

Mr. Shapiro: This is basically room: a lot of things that we are changing. There used to be triple rooms, three people to a room. Now there are two. There are a lot that are still two to a room and we are increasing the standards to make those changes happen so they end up with one to a room. Also, we are trying to implement a program where the consumers have a say in what goes on in this housing.

Senator Cochrane: Is this the building?

Mr. Shapiro: The buildings that they live in are all in certain areas, mostly in Parkdale in downtown Toronto. They are homes that have been converted to boarding houses so there can 10 to 30 people living in a house.

Senator Cochrane: This is working out fine?

Mr. Shapiro: To this point, it is working out fine. I am not in total agreement about the conditions in which they live but conditions are better than in houses that do not have the type of support that Habitat provides.

Senator Cochrane: Do you see more of these units coming forth?

Mr. Shapiro: There probably will be but we have initiatives to make a change to more independent living for supportive housing.

Senator Cochrane: And you have some input there?

Mr. Shapiro: Yes. I am on the board for Habitat Services.

Senator Cochrane: Wonderful. And you do as well, Phillip?

Mr. Shapiro: I have one voice in 15.

Mr. Dufresne: I used to be on my board which is House Link Community Homes, and they recently got funding from the provincial government to house people who may have difficulty with the law. We recently got more funding and we are looking for new buildings to house the people in. Right now we own something like 22 buildings all across the city. We house something like 330 people and we have a few other consumers who participate in different House Link programs but they do not live in House Link. There are a lot of different programs for people to participate in, and these programs are very beneficial. They make people feel good about themselves and they are able to contribute to the community by getting involved in these programs. There are other programs that people can get involved in too outside of our organization so it is very beneficial.

Ms. Chamberlain: There are actually 21 housing agencies and housing providers that we represent. All three of us are in different types of housing, but there are 21 that we represent, the boards of Mental Health Housing Services, and that is what we advocate with.

Senator Cochrane: So you have a voice there?

Ms. Chamberlain: Yes.

Senator Cochrane: Three voices actually; that is good.

Ms. Chamberlain: Well, 21 voices.

Senator Cochrane: Linda, tell us about your experience. Why were you asked to go to the U.S.? You say you have also gone to the U.S. and talked about your situation.

Ms. Chamberlain: I was talking about Progress Place, a rehabilitation centre where I was, and I learned daily living skills. Then I got on a committee there and I got to go to other programs in the States and also through Canada, the States and England. That was to see other clubhouses and how that movement worked and the housing they had there so I was very lucky to get to —

Senator Cochrane: So you have learned from that?

Ms. Chamberlain: Yes.

Senator Cochrane: Well, that is important and you were able to, of course, exchange ideas and things. That is wonderful.

Let me go to Becky. I was really impressed with your speech. I must tell you because I want to find out a little about your background. If you do not want to do it, that is fine with us.

Ms. McFarlane: Yeah, I will tell you as much as I want to. My experience with the mental health system was as a youth. Certainly, I think my experience is different than a lot of the people that I work with, and that are part of the community in which I move.

I think the mental health system has changed over the years, and is continuing to change. I certainly think there is a youth perspective that you probably want to hear as you move through this process.

I left home quite early and got smart at about 19 after living poorly and on the street. I went to school and made the mistake of taking fine arts and then graduated poor again. I spent a number of years struggling to find work, and I saw an advertisement for a kitchen manager at the Raging Spoon. I certainly had a food-service background and applied for that job and then became the business manager of the Raging Spoon. Now I coordinate a partnership between OCAB and the Parkdale Activity Recreation Centre which is a drop-in centre in Parkdale that is made up of predominantly a community of survivors based on its proximity to the Centre for Addiction and Mental Health, Queen Street site. Again, I think some of the individuals from The Dream Team have talked about the high number of boarding homes in Parkdale so there is a huge community of survivors there which is where I currently am working.

Senator Cochrane: So, you have really learned a lot then.

Ms. McFarlane: Absolutely.

Senator Cochrane: You certainly have. How does your business start?

Ms. McFarlane: Essentially, what happens is a group of survivors get together and talk about an idea. Really, OCAB models itself in a way where there is no business idea to start. I think that is what separates us from a lot of the other business development that happens within this whole social economy movement that we see coming up. There is no idea. It is not one individual. A group of people come together. There is a lot of skills-sharing and training that happens. Obviously, for a group of people to work together, they need to be able to facilitate a meeting so a lot of that work happens and people try things out.

Parkdale Green Thumb Enterprises, which is four years old, dabbled in cleaning and maintenance. They did some catering. They looked at a number of different options and finally settled on this idea of landscaping. They did a business plan and did their homework, and are now thriving four years later as a business.

Senator Cochrane: And got funding from?

Ms. McFarlane: We get funding from multiple sources. The ministry of health funds the Raging Spoon. ODSP Innovative Projects funds some of Out of this World Café and some of Green Thumb Enterprises. United Way's Toronto Enterprise Fund funds some of Out of this World and some of Green Thumb Enterprises.

We really had to go to many different funding sources to continue our work. Again, it is a headache when every year you have to spend hours writing funding proposals and submitting reports to multiple funders to continue to get funding. Again, there is a huge issue around the non-existence of annualized funding. Usually funding runs in one, two or three-year cycles and then you are done. You cannot apply again. There is no way. The situation that we are dealing with at Out of This World where we are going to lose two of our positions is basically a situation where the funding was for three years and we knew it was for three years, and we have gone everywhere trying to —

Senator Cochrane: In any of these businesses do you see yourself become self-sufficient?

Ms. McFarlane: Actually, self-sufficiency is not a goal for us. As long as we are engaging the most vulnerable people within the community, there will always be costs associated with what we do. We believe that if we ever become self-sufficient, we probably are not doing what we started out to do so it is not a goal. It is a goal to grow. It is a goal to bring in more revenues. It is a goal to employ more people. There is a goal to expand but we do not put pressure on ourself to become self-sufficient.

Senator Cochrane: I see. Thank you, Mr. Chair.

Senator Keon: Becky, you partially answered the question but it is intriguing as to how your organizations were created. Who came up with the idea, for example, and how did they come about? The same applies to Jennifer and to The Dream Team.

Ms. McFarlane: I don't think it was one person's idea. Certainly there were people in our community that were responding to the deplorable rate of unemployment. I think Diana mentioned the statistic of 85 per cent of our community is unemployed, and there needed to be a creative way to deal with that staggering statistic.

A number of survivor businesses have been around for over 20 years, A-Way Express Courier is one. There is a furniture-making business in Simcoe, Ontario called Able Enterprises Fresh Start Cleaning and Maintenance.

Really, I think it was the community being innovative about unemployment, poverty and OCAB as an organization. Diana Capponi has been the executive director of that, or was the executive director of that organization. She left a year ago to work at the Centre for Addiction and Mental Health. She and a number of other leaders within the community decided having an umbrella organization that could support the development of these businesses seemed like a good idea and they worked tirelessly to make it happen. Certainly, people within various levels of government were supportive of that, and continued to be supportive of this model.

Ms. Chambers: Your question also gets into one of the answers I wanted to mention to Senator Kirby as well, which is the way that the Empowerment Council started in Ontario. We were actually the result of Canada's one and only national conference that has ever taken place for consumer survivors and consumer survivor organizations around the country. The lack of such an event ever having happened again is one reason that there is a disparity in consumer survivor business and other organizational development around the country.

At that conference, a speaker from Holland talked about the requirement in Holland for psychiatric facilities to have a council that represents the patients within them.

Following that, our then-NDP government decided to try to create patient councils in Ontario. We created the initial councils at Queenston and Kingston. Following that, councils developed at all the provincial psychiatric hospitals. However, as I said, a lot of the councils have been lost through divestment.

The Empowerment Council was developed particularly because the Centre for Addiction and Mental Health adopted an empowerment report in which they supported an independent council at the centre. We have been trying as best we can to support councils in any other locations to get the same or to get it back.

Also, I wanted to mention as well your question about whether consumer survivor alternatives save money to the mental health care system. There is research showing that they do. The very last page of our submission has footnotes that describe two studies that show that consumer survivor alternatives save millions of dollars in hospital days. There has actually been a third study, a longitudinal study, which you can get through the Ontario Peer Development Initiative that shows the same thing.

Mr. Dufresne: You wanted to know how The Dream Team got started? Seven or eight years ago we were looking for a way for board members from different organizations to get together and talk about mental health and housing issues. At that point in time we were called the Boards for Mental Health and Housing Services. We would have regular monthly meetings and sometimes we would invite guest speakers in to talk about different housing issues, but the group did not really seem to be working out very well. Many people, including myself, left because we were not really interested and we did not really see any way that consumers can contribute.

Then at one meeting, Linda and a couple of other consumers got up and started telling their stories, and somebody came up with a great idea, that is what we should be doing.

That is when The Dream Team was created and at that particular time it was only board members involved. As time went on, we started to add other consumers who were not board members, and we just continued to grow from there.

Senator Keon: How did you settle on the name?

Mr. Dufresne: The Dream Team: maybe Linda or Mark could answer it better than me because I was not there at the time they came up with the name.

Mr. Shapiro: There were six of us, I think initially, that were with other community members. We were trying to figure what do we call ourselves and somebody mentioned that it is a dream that we will get these homes, the supportive housing, and so somebody said, let us just call it, ”The Dream Team,“ It is as simple as that. It is a dream that we are looking for and those people living in supportive housing are living a dream.

The Chairman: I thank all of you for attending here today. We really appreciate it.

Our last panel this afternoon consists of three different groups. From The Gerstein Centre, we have Dr. Reva Gerstein, who is the founding chair, philanthropist, and well-known person around Toronto. With her is Paul Quinn who is the director.

We also have David Reville here who is appearing on behalf of himself.

Then we have three people from From The Heart Committee. It is bad English , two ”froms“ in a row. Doug Millstone is a family law lawyer, Patricia Commins who is a retired, and Michael Flaxman who is a volunteer.

So, I think, Reva, we will begin with you. I don't know if you or Paul are doing the presentation but thank you very much for coming and it is nice to see you again.

Dr. Reva Gerstein, Founding Chair, The Gerstein Centre: I think I can be heard. I am delighted that we were invited. Paul Quinn, who is beside me, is the director of The Gerstein Centre, and I would like to very quickly indicate that The Gerstein Centre is not named by me but for me.

I also want to commend you, Mr. Chairman, Senator Michael Kirby, and all your colleagues for the work you have been doing these past few years. It is important. It has been done well. It is outstanding and it is serious. There is no question that from someone who has been around for a little while, I am grateful for what you have done and the issues that you have pointed out, and where you will go from there.

My CV and kit have been circulated so we do not have to go into all that. I will zero in on two things. I think if I just tell you one date, it will make you realize that I come from a long way. I got my Ph.D. in 1945. I was connected with Dr. Clarence Hincks and Dr. John Griffin in the original stages of the Canadian Mental Health Association, CMHA, so I have a long history.

I will simply pick out two or three salient points of that whole span and not go into an encyclopedia on mental health in Canada.

One of the first things in looking back that fascinates me, which I realize was an important turning point, was when Dr. Hincks called to tell me someone was coming from Europe to tell us about a new medication. That was about 50 years ago. The new medication was developed in Germany and it was to make it possible, they felt, for all people who had been in asylums, or whatever, with mental illness to be released from institutions.

As I look back at that and think about where we were then and how long it took to get away from there, I suppose we still have a mentality of a magic bullet that somewhere there is a medication you can give for any disease, whatever, and everything will be just fine. When I realized even today there are still concerns about the dosages for children, the concerns about the high rate of suicide among young people, and the whole thing about dosages — and I am not just talking mental health now, I am talking about health in general, and the dosages for older people — we still have to move a long way. What is interesting is that we did not have one sense at all of the psychosocial support system that would be needed and required along with the medication.

It was not really until almost 30 years later that I was invited by the mayor of Toronto in the early 1980s to head up a task force to develop a plan for the City of Toronto to deal with the de-institutionalization of psychiatric patients in the community of Toronto. In all fairness, in all those years I was not involved only in mental health. I had gone off in many directions but it intrigued me that, after all those years, they wanted me to do this. I thought this would be an interesting opportunity as a volunteer to think through freshly where we were and what had happened. I had an excellent advisory committee with me so I did not do it all alone. It took over a year of hearings and listening and it was my first encounter with people like Pat Capponi who I consider my key mentor and her sister Diana. What was really thrilling for me today was to contrast what I had heard 25 years ago when we first had the emergence of psychiatric survivors — nervous, articulating for the first time about the things that they wanted to say — and to listen to the people today. That in itself has a long history in terms of experience, respect, their place in the world, et cetera, and they do not really need me anymore.

The role of survivors is very, very important and I noticed in your issues that you used the word ”client patient.“ This should be at a very important jump-off point for you and I would tell you again, that was when my head was turned around to really look at the world of mental health through the eyes of survivors. One of the things arising out of that report — and I am not going to go into my whole report that came out, I believe you have it in you're your kit and I am not saying that all the others are not important, they are very important and you have heard people speaking for themselves about the various services that they developed, many of them which were first touched upon 25 years ago — there was one, which now is called The Gerstein Crisis Centre. It focused upon a crisis centre that was community-based and non-medical, and that was not an easy thing to sell later on. It was a psychosocial support system, short term; not a shelter and not a residence. It had three facets to it. It had a 24-hour telephone service. It had three shifts of staffing. It had a mobile unit and it could house 16 people if they had to be brought back to the shelter. The approach was not one that rested on diagnosis. It was not a medical approach. It was a psychosocial support system. What is important is the development of the psychiatric survivors as an integral part of what The Gerstein Centre is and became.

When crisis workers are hired, the selection committees include psychiatric survivors in the selection. They are not asked for their degrees or their honours. What they bring is their sensitivity and awareness of the needs of someone who is in crisis, and the approach is to crisis, not a particular illness. I think that is important to emphasize. One-third of our board is always made up of psychiatric survivors and I keep mentioning these things. We have agencies. We have young women lawyers. We have connections and relationships with all kinds of agencies in the community. We have referrals from hospitals. We are 16 years old now. What is interesting is that, through the 16 years, we have been supported by all three political parties who had been in power. It started at the city level but the city does not have money. At that time, you had to go through metro and then you had to go to the province to get this kind of thing financed.

We are not saying that this is a cult and this is the only way to work with psychiatric survivors, but it is amazing what an attitude has meant, an attitude that respects those who have been in crisis and are in crisis. It is also an attitude at a board meeting which has to stay fresh. I have a very strong feeling about things becoming institutionalized, and one of my pet questions every few months is to ask, Have we turned anybody away and, if so, why? That gives you a clue to your changing caseload, or if there are some unusual things that you were not aware of that are starting to come in, or there are some things out there that we cannot handle. This has been an important experience for me. I have many, many colleagues.

Right beside me is the person who is the director and he has been the director with me for 16 years. I found him originally with the Parkdale Activity-Recreation Centre and he is going to be handling the details.

The important thing for me to say is that attitude is one of the most important things when you are working in this field with psychiatric survivors. Yes, you have to listen. You have to respect self-esteem. Empathy is extraordinarily important and does not come necessarily with degrees. Some people are very good psychiatrists and they have empathy. Some people are good psychologists and they have empathy, and some people are social workers or whatever; I can go through the whole gambit. This is not important to us. The important thing is their attitudes: truthfulness, no condescension, and expectations clarified with the person you are working with that they are not going to be there for a long time, within a certain time interval, but they are helped through.

It is with that note and pleasure that I now turn the comments over to my director who can really help you with a lot of details and tell you how things look from his end.

Mr. Paul Quinn, Director, The Gerstein Centre: There is not much to add to what Dr. Gerstein has said except that I think one of the things that we did when we started was make sure that we had a place and Dr. Gerstein was instrumental in finding it. It is the old police staff house in downtown Toronto, a large Victorian house that is set up in a very nice way for people to come in and spend some time. We looked at a number of places in Montreal in terms of crisis centres and they all had very nice office space for the staff. They all had very nice furniture for the staff, and when you saw where people were staying, you saw three and four beds in a room, second-hand furniture poorly setup, and no common space. We did it the opposite way.

All the staff space is in the back of the house. All the client space is in the front. All the client space has the southern exposure, the good sun, a nice place for people to be and lots of open space for people to spend time in. The setting itself respects the individual when they walk in. Staff often talk about how the house does much of the work for them when people come in.

The other thing we did when we started was look at who we were hiring. We looked not at degrees and diplomas but at people and people's attitudes. We deliberately set out to try and hire as many psychiatric survivors as we could who had otherwise qualified for the job. About a third of our staff were psychiatric survivors and everybody was hired at the same level. Everybody was a community crisis worker. Whether they had a degree in nursing, a master’s degree in psychology or a grade school diploma did not matter. If they could do the job, had the experience and had the right attitudes, they all did the same thing and they worked together as a team. That I think is incredibly important. It brings a variety to the job and the work. It brings a variety of perspectives that allow people to relate to the individuals who are calling, in various states of crisis.

It was originally set up for 16 beds but we wound up only with 10 because of the local bylaws. We could not have more than that in a setting and where we were so it has 10 beds. We get about 1,500 phone calls per month from people in various stages of crisis; everything from somebody calling in wanting to know if somebody is going to be on the other end of the phone in case they get into crisis to someone who is actively suicidal. That means staff have to be very flexible and know a lot about the services that are available for people when they are on the phone.

We go out on about 100 or more mobile visits so we have a mobile team that actually goes out and sees people in the community. We will meet them in their house. We will meet them in a hospital, in a park, at a coffee shop or wherever the person is comfortable meeting with us, taking into account safety for staff.

I think the most important piece that we do though, is the house when we bring people back. They get three to five days, sometimes seven. It is very flexible in terms of what an individual needs when they come in, and you set up a plan with them. The person coming in, who is the client or the person in crisis, has a say in how their crisis is handled. One of the things we do is ask people those kinds of questions. We have a questionnaire we give out to people when they stay, and I actually had one returned today. One of the questions we ask is, Did you have a say in how your crisis was handled? Every year we get between 80 and 90 per cent responding that, yes, they did have a say in how it was handled, and that is incredibly important. It is more effective if people know that they had control over what happened to them and had a say in what happened to them even if we do not have a lot of great choices out there. There is certainly never enough housing that is easy to access but it is still an opportunity for people to make some decisions about what they do.

The other piece I think that is really important is when we were funded by the ministry, we were able to get two training positions. I think that probably slipped by. They did not notice it but we managed to have two positions for trainees. These are paid positions. We hire individuals for a one-year contract where they get on-the-job training. It is specifically for people that have been through the psychiatric system themselves who want to work in the field but have been unable to either get the education or experience necessary to get full-time jobs. We have managed to train approximately 12 people in the 16 years we have been there, of whom 10 are currently working full-time in either social services or community mental health somewhere. Two of them are currently working full-time at The Gerstein Centre, and have been a valuable asset to us.

One of the individuals was actually a client of The Gerstein Centre when we first opened, made some decisions about how she wanted to handle her life and wound up coming back, doing the training, going out and working somewhere else. Now she is back as a full-time crisis worker at The Gerstein Centre. What she brings to the centre is, she says I know what it is like to be on the other side of the door. Staff work in an office answering the phones. She says, I know what it is like to be on that other side of the door. That is something that I do not think you can teach people at university, college or anywhere else. That kind of life experience is what we need more of, in community mental health.

You have heard from a number of survivors today. Hopefully, you will hear from more, but I think those are the people you really need to listen to in terms of what the mental health system needs to look like, and what kinds of things need to be put in place. They are the ones who are receiving the service. They know what it is like and they are the ones you should be listening to. Thank you.

The Chairman: Thank you. David Reville.

Mr. David Reville, As an individual: Good afternoon, senators. I appreciate the opportunity to speak to you today. I am a psychiatric survivor. In the mid-1960s, I spent two years in psych hospitals and so profoundly troubled was I by that experience that I have spent 40 years now trying to change the way we respond to mental illness.

Now and then, I have been lucky enough to be in the right place at the right time. For instance, I was in the right place when the mayor of Toronto appointed Dr. Reva Gerstein to head up her inquiry into the plight of people being discharged from the Queen Street Mental Health Centre, as it then was. My brilliant stroke was to introduce Pat Capponi to Dr. Gerstein, and I think probably the people of Ontario should be really grateful that I had the foresight to make that introduction.

Dr. Gerstein and Pat Capponi together convinced the province to fund the very first non-crisis intervention centre, non-medical intervention centre.

The Gerstein Centre has been an incredible resource to consumer survivors, not just because it intervenes in a tender way when we are in crisis, but also because it lends us the boardroom when we have no other place to meet. The Gerstein Centre has also been incredibly generous with its executive director, Paul Quinn. For instance, the Gerstein Centre lent Paul Quinn to A-Way Express for six years as our treasurer. I am proud to be the co-chair of A-Way Express and I can tell you we sure miss Paul Quinn. I think Paul has been on the board of the Ontario Council of Alternative Businesses since the year dot; is that right?

Mr. Quinn: Pretty close.

Mr. Reville: Pretty close, and so that is another resource that The Gerstein Centre provides to our community.

I do not have anything very different to say to you this afternoon than the other survivors have said, with perhaps one small exception: I am a great fan, as you might guess, of survivor business, and a great fan of other types of survivor initiatives.

I want to tell you a bit about an educational program I am involved with, which I think holds great promise, and I want to talk a bit about an information-sharing mechanism.

I was in the right place at the right time in 1991. I was special adviser to the Premier when the treasurer was looking for anti-recession activities in Ontario. One of those anti-recession activities was to put $3.1 million directly into the hands of the consumer survivors to deliver various kinds of self-help activity: to do pure support, to do advocacy, to collect and disseminate survivor knowledge and, of course, to develop and operate survivor-run businesses.

I am happy to be here this afternoon with at least six employees of A-Way Express that I have seen coming in. Of course, you have met Becky McFarlane who used to be the kitchen manager of the Raging Spoon, and who now does the OCAB partnership; and Diana Capponi who for many years was the executive director of Fresh Start Cleaning and Maintenance and then for about 10 years the executive director of the Ontario Council of Alternative Businesses.

Dr. Gerstein was perhaps modest in that she did not tell you that her 1984 report was also responsible for A-Way Express because she knew that survivors needed a way to participate in the economy.

Another of my colleagues is with us this afternoon, Dr. Kathryn Church, who is a colleague of mine at Ryerson University. She has just returned from Taipei where she attended the Fifth Asian NGO Forum and she screened the film about Ontario survivor businesses, Working Like Crazy with subtitles in Mandarin. You know that the film — you have heard about it several times today — takes you to three sites in Toronto: A-Way Express Courier Service, the Raging Spoon diner and catering company and Fresh Start Cleaning and Maintenance.

In a chapter for a forthcoming book, Dr. Church tells stories about the film's distribution across Ontario and the United Kingdom. She makes some recommendations about how to foster survivor economic development, which I will imagine you will find interesting. I am not sure that anybody has mentioned this but one of the problems we face in survivor business is the regressive income and benefits policies that we have in this country, particularly the threshold on earnings before this disastrous clawback begins of 75 cents on every dollar above $160 a month.

Another thing that may not seem obvious but that is very important in terms of developing survivor businesses, not just in Ontario but elsewhere in Canada, is that we need to have policies that foster the growth of survivor groups and survivor leaders generally. We also need to move the work of economic development into the hands of the survivor community.

Survivor businesses foster the development of several types of informal learning. Yesterday I was pleased to be at an event that fused the informal learning with the more formal learning because I brought Pat Capponi and Diana Capponi to a workshop for the students of the Assistant Cook Extended Training program, ACET. The program is a partnership project of the Centre for Addiction and Mental Health and George Brown College, which is a community college here in Toronto that is quite famous for its hospitality centre. ACET is designed to train people with mental health and addictions problems for careers in the food service industry. It is funded primarily by the Ontario Disability Support Program that is part of the community and social services here in Ontario. We are just now beginning our second group of 24 students. The first group of 24 students graduated in December, and some of them are now working. I am sure that ACET could be a model for other community college programs, not just here in Ontario, but across the country, and it does not have to deal only with cooking. It could deal with any number of occupational trainings that people could benefit from.

Survivor initiatives and survivor business have quite a long history in Ontario now. The assisted training program is in its infancy but I think it has relevance for other parts of the country, and it requires governments and the other provincial governments to bite the bullet and put money directly into the hands of survivors so that survivors can decide what best to do with that money.

That is why I want to mention just one more thing before I close. We need an information-sharing mechanism that allows the provinces and territories to benefit from nifty programs that they may be able to develop locally, provincially and territorially. I know that we made a presentation as survivor businesses a number of years ago to the Federal/Provincial/Territorial Advisory Network on Mental Health, and I saw Carl Lakaski here who coordinated that. That could be reinvigorated although I would prefer a table with rather more people around it; survivors and family members as well as bureaucrats.

Thank you for your attention and I look forward to reading your fourth report in November.

The Chairman: Thank you, David. Now we have three representatives from From the Heart beginning with Doug Millstone.

Mr. Douglas J. Millstone, Family Law Lawyer, From The Heart Committee: Senators, my name is Doug Millstone. I am 54. I am a sole practitioner. I am a family law lawyer. I have been doing this for almost 30 years. I am in a wonderful, new relationship. I am the father of Aviva, Eytan and Dov and I have two delightful stepchildren, Laurie and Rob. I am a long-time addiction volunteer, volunteer trainer and speaker, and I have a number of other long-term volunteer pursuits.

Depending on the context in which I would find myself, I would normally stop here. It is in this setting that I am also sharing with you, and by extension the public at large, that I am in recovery from alcoholism and have been clean and sober for over 18 and a half years. I have never said this publicly before.

I have often been to funerals and sometimes my mind will wonder as to what my eulogy would look like. I really want to be sure that my recovery has been an example for others and that I have left some small footprints in the sand. Why should this wait until I am dead? It ought not to be except for the stigma attached to what I have just said about myself. Even now I am wondering what the impact is on my life having made this public disclosure. Such is the power of the stigma.

What then has happened to enable me to say these words today? I would like to contribute some thoughts on the importance of volunteering. As an example, I would like to comment on the feasibility of a speakers' bureau similar to that established in the United Kingdom. Our group known as From The Heart, is a volunteer committee at the Centre for Addiction and Mental Health. From The Heart is a prototype or a paradigm of an addiction speakers' bureau. The purpose in establishing From The Heart was to develop a model that would enable individuals with addiction to be freed from the stigmatization and discrimination they confront in their daily lives. Speakers tell their stories of recovery, speaking from the heart. They are asked to state what defines them and what is important to them. They speak of the pivotal experiences in their lives, their recovery approaches and their personal journeys. An open mike session and informal mingling completes the evening. The goal is to help recovering individuals, and to bring an awareness of addiction recovery to the community at large.

One of the foundations for long-term recovery from substance abuse is an ongoing cognitive connection to the recovery process. This can take many forms including regular attendance at after care and outpatient programs as well as a wide variety of community programs such as Twelve Steps and the Fellowship Program. An emotional connection to recovery is established. Volunteering is an additional step taken by many recovering individuals.

Perhaps a broader notion would be that the concept of volunteerism would enable the individual in recovery not only to give back to the service provider clients and the community, but also to maintain an ongoing awareness of recovery issues. It is submitted that the longer and more regularly one volunteers, the more the ability to maintain a clean and sober lifestyle becomes ingrained in the individual's constitution. Notwithstanding the social stigma, there is ultimately perhaps the ability of the long-term volunteer to share his or her life experience with members of the public, and not only in the context of the community of clients who are in recovery.

Ms. Patricia Commins, Retired Teacher, From The Heart Committee: I would like to speak, senators of the committee, first of all, on the point in Chapter 1.1 of this committee’s report, Mental Health, Mental Illness and Addiction: Issues and Options for Canada. The chapter is, ”A Patient/Client-Centered System Oriented Toward Recovery and With Personalized Care Plans.“

I would like to say, first of all, that I have myself 20 years of substance-free recovery without alcohol or the prescription drugs I was addicted to, and that I myself experienced incredibly flexible and very multifaceted recovery services at CAMH, at the Donwood Institute as it was then, now part of CAMH. That is my background and why I speak about client-centred care. I wish everybody could have the kind of client-centred care I had. It was fantastic so my support is wholeheartedly behind the concept of a patient-centred system.

For the client, successful addiction recovery depends at the outset on a client centred, individualized and flexible care plan. Moreover, the better the fit between the client, the caregivers and the plan, the better are the chances of recovery. Care facilitators are needed to assist clients to navigate the labyrinth of services and resources, and these are going to be established actually at CAMH soon. Eliminating the silos of care will enable those with concurrent disorders, and many clients have overlapping addictions and mental health difficulties, to access coordinated care.

After treatment, the addiction client needs to be connected with some form of recovery community and Doug has referred to that too. 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. The recovery community might take different forms in different parts in Canada depending on how treatment looks in certain parts of Canada.

Recovery from addiction is life-long. The expertise of recovering addiction clients is a valuable resource, and that is the point I think from which we all come in our group, From The Heart. For example, and this has been done, graduates or alumni of various addictions programs across Canada could be utilized within their communities. They could provide inspiration, strategies and techniques to help the newly recovering. They would strengthen the existing recovery communities and resources which exist in Canada, be they small or large.

The second point, if I could just have a drink of water, is from Chapter 4.1 of this committee’s Report 3, and has to do with combating stigma and discrimination. It is unfortunate that at the present time addiction is still secret, it is hidden and it is swept under the carpet. Unfortunately, it is regarded sometimes as a moral failing or a character flaw to this day.

I would like, however, to suggest focusing more intensely on the advantages and benefits of recovery as a national anti-stigma strategy. Stigma remains very strong and, as your own committee report stated in Chapter 4.1, individuals with mental illness and addiction ”are routinely excluded from social life and can even be denied a variety of civil rights….“

I would like to add to that point a very subtle form of discrimination that I experienced. As it happens, 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. People think, can we trust her? Will she stay the course? Is she going to be able to perform? I would like to point that out because it is a kind of discrimination which I have not read much about but I have experienced it.

Nevertheless, it is a reality that people can and do recover from addiction. A strategy concentrating on the benefits and rewards of recovery might work better than focusing on the stigma and discrimination. The role model examples, knowledge and expertise of recovering addiction clients could be mobilized in a positive manner. 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? Thank you.

Mr. Michael Flaxman, Volunteer, From The Heart Committee: Thank you. My name is Michael Flaxman. I am 45 years old, a recovering heroin and cocaine addict from which I have been free for nine years. Married without children, I have been volunteering at the CAMH co-facilitating groups of cocaine and opium addicts for the last six years. I also worked with the homeless in the Anishinabe Street Patrol program for six years as well. I am also an ex-federal inmate. I finished serving a seven-year sentence in 2002. Three of those years were on parole in the community.

I would like to speak about Chapter 7.1 in your report on the role of the federal government and the delivery of in-depth meaningful programs to federal inmates. It seems that inmates do not have a voice, and when we do hear about inmates, it is usually in a negative media report of some kind from inside prison.

My feedback to the inquiry deals with Chapter 7.1. The programs that have been in place for a number of years are a good start but they can be improved on. If one were to access the website of the Correctional Service of Canada, CSC, and go into the drug programs that are available, it is a very nice read and it looks good. It seems as though, upon reading that, that the Correctional Service has their finger on the pulse, and that they know exactly what is going on. For the most part, they do, but the fractured timetable of the programming does not necessarily give the client, the inmate, who is continuing to struggle with substance abuse a chance for any substantial clean time.

From my personal experience, after many years of substance abuse, I wound up in prison eager with a strong desire to stop using but it took six months for me to begin any programming. A lot of people who enter with a strong desire are unable to capitalize on that emotion and quickly fall into the prison culture of drug use.

I would like to add that the stigma attached to addicts outside of prison is reversed inside prison, that is, one who shows a desire to stop using is not always looked upon as someone who can be trusted. This can lead to rumours and innuendo that can make life miserable, even dangerous for those more vulnerable.

My suggestion is one of many but the first one is, why not have a low-medium security facility that deals with non-violent drug-related crimes that delivers programs along a specific continuum that are specific to the needs of addicts. These individuals tend to be serving shorter sentences than others, and with accelerated parole review at which they are eligible for day parole at the one-sixth point of their sentence, their focus can be solely on their addictions.

Patricia just mentioned a recovery community and that is not the first thing that comes to mind when I think of prison life. It is not a recovery community but a separate institution dealing with inmates' addictions and other issues as well that could be a model for a recovery community. In my experience, upon first entering prison, there are a lot of individuals that want to change their lives and trade in their ten-cent lives for a new one, but the support system is not there. The warehousing and assembly-line attitude of the Correctional Service of Canada leads to that falling back into substance abuse in prison.

The programs that are offered are good ones that can help. However, they would be more productive if offered one after another with random urinalysis conducted during the programming. The current system of random testing of the population is not a productive use of dollars. Programming that follows a constant along with the testing gives inmates a chance at a little clean time.

I realize there are costs associated with more qualified people to deliver the programs, and credibility goes a long way in prison. Prison life is an us-versus-them mentality and for the most part programs are delivered by trained ex-guards, trained ex-librarians, and they are still on the other side of the wall. They still go home at night and the us-versus-them mentality is prevalent. If there is credibility in the background of the individual who is developing the programs, that is, addictions counselors — I never came across one in prison — it would go a long way to helping an inmate establish a rapport with somebody that isn't a ”copper.“

Why not use a person's time to allow him or her to help themselves if that is what they have in mind? Some consider their sentence a blessing, as I did, and as much as possible should be done to allow them to become meaningful members of society. Thank you.

The Chairman: Let me thank all of you for coming and making your presentations and I am going to start with Senator Cordy with the questions.

Senator Cordy: Thank you very much to each of you. Every time we have sat down today we learned more and more about the system and the needs of the system, but thank you for contributing to our knowledge today.

I would like to talk, first of all, about The Gerstein Centre which seems to be a model that could be used in other communities. I guess you said that there is no magic bullet, no magic care, but put things in place so that individual recovery systems can be put in place. When somebody comes to the door of your crisis centre, do they come on their own or does somebody come with them? What is the pattern?

Mr. Quinn: Usually it is a phone call first. We talk to the individual on the phone, sort through what is going on with their crisis, and then the team goes out to meet them in the community. If we do not know them, have never met them before, we will always go out to meet them whether they are in a hospital or anywhere they happen to be. One person talks to them about why they feel they are in crisis, what they have done in the past to resolve it, and why it is not working now. Then they bring them back. We have a van that goes out and sees people in the community and then brings them back to the centre for a short stay.

Senator Cordy: Would there be times that you would not bring somebody back to the centre?

Mr. Quinn: Yeah, there would be. Most of the time when we go out, about 70 per cent of the time we actually do bring the person back. However, of the phone calls we get, about 90 per cent of the time we can resolve it on the phone.

There are various reasons we would not bring somebody back: we can resolve it by going out and seeing them and talking to them and figuring out what resources they already have and how they can best use those resources. It could be that safety is an issue back at the centre. We have 10 people in the house, both men and women, and sometimes there are only two staff in the house to manage it. If safety is an issue, it may be a reason not to bring someone back.

Senator Cordy: What about when you are setting up a plan: who sits down to determine what the plan will be?

Mr. Quinn: The two crisis workers who go out on the mobile team talk to that person and figure it out with them. When they come back to the centre, often it changes. There would be one staff to the person who is staying there and they will determine what they want to accomplish in the short stay that they have.

Senator Cordy: What about afterwards: is there a follow-up? I know I was involved with homeless youths in Nova Scotia and there was a follow-up team.

Mr. Quinn: We do not have a follow-up team as such. We are not funded for it but we do have volunteers, about half of whom are psychiatric survivors who go through a ten-week, one-night-a-week training course. They then phone people after they have stayed at the centre to ask if they want follow-up. They follow up in terms of calling them once a week, seeing if the referrals we have made have been okay and if not, why not, and then trying to sort through what the next steps might be.

Also, people can call back. If things do not go well when they leave, they can call back the next day and that is fine. We will try and figure out how to support them either over the phone or by going out to see them and, if necessary, bringing them back again.

Senator Cordy: How many staff members do you have? You perhaps mentioned it.

Mr. Quinn: There are 21 full-time crisis workers I think. In total, we have 29.33 full-time equivalent staff including relief.

Senator Cordy: Would somebody come just to have somebody to talk to for an hour or two hours and that would be all they would want?

Mr. Quinn: Often that is what the mobile visit is, or the phone; a chance to talk. I think you cannot underestimate the amount of work that gets done on the phone with individuals who call in, trying to hear what they are saying and making sure that you are listening to what they feel is their crisis and helping them resolve it. It is an amazing staff. They are incredibly flexible around different things that they can do.

There was a woman that came whose husband was hospitalized. They both had mental health difficulties. He was hospitalized for a physical illness and she was feeling very isolated and alone and did not like to be in her apartment without him there so we made arrangements for her to come in for dinner. She would come in and have dinner at the centre and then go home afterwards, and that is all she needed. That kept her from getting into a crisis.

We had another man who was getting ECT. Now, I am not crazy about ECT and I am not very fond of it, but he had chosen to have it and after he had his ECT —

Senator Cordy: What is ECT? Is that shock?

Mr. Quinn: Electroconvulsive therapy, shock treatment.

Senator Cordy: That's what I thought, shock treatment, yes.

Mr. Quinn: He was very disoriented after the shock treatment and was afraid to go home on his own otherwise. He had a choice of staying at the hospital until he felt okay or if his worker could bring him to the centre, then he could stay there for a few hours until he felt okay to go home. He did that and came back and stayed with us for a bit; so those kinds of things.

Senator Cordy: Sounds like an amazing place where you really do look at the individual.

Dr. Gerstein: I have always been interested that we have not been duplicated. We have had articles written. We have had documentaries made. We have not made them but others have made them of us. Groups in various parts of Ontario have presented briefs for the development of a similar kind of thing, but only parts of what The Gerstein Centre does has been picked up, but not picked up to my knowledge anywhere.

Senator Cordy: It seems like such a model and why? Why would be the question.

Dr. Gerstein: I do not know. It was the last thing to be implemented in the Gerstein Report. It took six years longer than anything else, but I really do not know whether it is cost. It is costly but not as costly as being in an institution of course.

Mr. Reville: I think it is because it is non-medical. It has not been picked up because it is a non-medical service. I am not kidding.

Senator Cordy: It is outside the box. It just seems like an amazing thing that is happening.

Mr. Quinn: It is really simple. It is really simple. People call.

Senator Cordy: That may be the problem, right? I guess, David, you have talked about the need for a sharing mechanism.

Mr. Reville: Yes.

Senator Cordy: It is not enough, I think, to put something on a website because you have to let people know that it is on a website. You talked about a model of talking to provincial and territorial leaders but you said again, and I agree with you, it is not enough. You have to have families and survivors together. Did you envisage a model when you talk about a sharing information model?

Mr. Reville: Well, certainly the federal/provincial/territorial advisory network, when it had some money and was able to travel around so the people could actually meet face-to-face, was the kind of mechanism that is effective. However, it tended to be mental health bureaucrats from different parts of the country getting together. They received deputations the way that you are. There are some national organizations. Not all of us feel that the national organizations are as representative as they might be, but certainly there are national organizations for most of the disability community, including people with mental health issues, where some of this work does get done, no question about that. However, I think it needs to be done in a systematic way and it is certainly worthwhile putting some resources into that because people develop things in their local areas that are good things and the rest of us could really benefit if we got a chance to hear about them.

Senator Cordy: So, we do not have to reinvent the wheel basically.

Mr. Reville: Exactly.

Senator Cordy: I am going to turn now to From The Heart, which is a wonderful title for your organization by the way. Patricia, you talked about combating stigma but you also talked about concurrent disorders and coordinated care. If you have a current disorder, addiction and depression or another mental illness, how difficult is it to get help for both illnesses?

Ms. Commins: It is improving. When I recently worked directly with clients on the front-line basis facilitating client groups, I had many clients who needed both kinds of care. They had extreme difficulty because sometimes the attitude is, you have to stop using your substances before you can get mental health treatment. Sometimes it is, we will take you in for the mental health treatment, but do not by any means stop using your substances — there is a conflict as to which is done first sometimes. It is definitely improving and CAMH has wonderful concurrent disorders expertise and programs. However, I think it is as high as 30 to 40 per cent of mental health clients and addiction clients have overlapping difficulties. It is a substantial number of people. The way the system is complex now, without the care facilitators or without guidance and interconnection of various services, it is extremely difficult still. It is improving though.

Senator Cordy: That is a positive, is it not?

Ms. Commins: Yes, it is.

Senator Cordy: You have all talked about the stigma. How does From The Heart work to get rid it? Doug, you have particularly talked about the stigma.

Mr. Millstone: I think the core is the piece about volunteering. Pat and I have been long-term volunteers and have done a number of pieces at the centre including facilitating groups and training volunteers. Ultimately as we worked through our various activities, it became clear that it was confined, that what we did for others who were in the recovery community and for ourselves, that sort of combination, was not out in the public. I think individually it was common sense that I am not prepared to let anybody know. That is common about how people would react and about coming here today.

From The Heart developed because there has been a lot of work done by those in the mental health community about coming out, if you will, and speaking their minds and sharing with the community at large. That is where From The Heart developed. For those of us who have been reasonably long-term volunteers, it is almost revolutionary.

Senator Cordy: You are putting a face on those who have suffered from addictions, which hopefully will decrease the stigmatization.

Mr. Millstone: Which is a face like yours or mine or anybody else's and does not make us any different from anybody else in this room. It ought to be part of who we are without fear of saying it. We are taking one step at a time and our group is in its infancy. This became an opportunity and we felt we would like to share.

Senator Cordy: Michael, were able to talk to Anne McLellan, the minister responsible for security? She wanted your advice on what you should do, what would be your first step in terms of looking at people who go into prison because of addictions?

Mr. Flaxman: I would first mention to her that CSC's vision of rehabilitation is admirable and it is a great start.

Senator Cordy: However, there is a disconnect.

Mr. Flaxman: There is a disconnect from the time you enter the institution until the time you leave. They say we know that long-term residential care is more successful than short-term with a comprehensive follow-up community phase to the program. That sounds a lot like a federal prison sentence and parole. It sounds like a perfect opportunity to take advantage of that for those individuals that have been convicted or pleaded guilty to crimes that are not necessarily victimless, but did not involve violence and did involve say, drug trafficking and property crimes. There are far too many people doing federal time in minimum-security and medium-security institutions that do not deserve to be there. If the system wants to say they deserve to be behind a wall somewhere, then I would say the wall should be around a recovery community of people who want to quit using dope because a large percentage of them do want to make a change. Obviously, something went wrong in their lives and they do not all want to go back, but recidivism numbers will say that most of them do for technical violations using drugs, or committing crimes to support their habits again while on parole.

It tends to be a revolving door system, but a drug-and-alcohol-only rehab institution would be much more effective than the fractured programs that are delivered in the federal system now.

Senator Cordy: Does your sentence have to be so long before you actually can access any help at all?

Mr. Flaxman: No. Upon entering the system, they use a computerized lifestyle indicator, which is a lot like going to get your licence; answering questions and pushing buttons. Instead of talking to an individual about your past and your problem, they leave it up to computers to determine what your needs are, and that does not strike me as being very productive.

Upon entering the system, I knew as an inmate that to be perfectly honest with those questions in my answers, I would be taking programs until the end of my sentence. They would have so many programs piled up for me I would never have them completed in time for my parole date. Consequently, people are not truthful on those tests. That is what winds up happening.

The Chairman: Thank you. Michael, just before we turn to Senator Trenholme Counsell, you said that the Correctional Services Canada vision is terrific, but is it fair for me to conclude that you are also saying, but their actual method of operation does not bear a lot of relationship to the vision?

Mr. Flaxman: Yes, that would be fair.

The Chairman: I am not trying to put words in your mouth.

Mr. Flaxman: That would be fair.

Senator Trenholme Counsell: I do not know where to start. Senator Cordy has brought some of this out, but I guess we are all very worried about our communities and about drug use and how it filters down to the young children and some of the crimes that come with it especially against seniors and even with snatching of purses in the parking lot of Tim Hortons. That is the last one I read, in Moncton, New Brunswick.

I am a doctor and I want to ask you, Michael, what they do with you. I would have thought some sort of treatment plan began immediately. You go in, you are on cocaine, you are on whatever, you do not get treatment for six months but you try to find your way, and make your way to the drug culture to feed your habits. Do they give you injections of some kind of a tranquilizer or are you left to bang around in your cell? What happens, if you care to answer?

Mr. Flaxman: Absolutely. The reason for the delay is backlog. The number of available spaces for offenders to receive programming is limited. Because I was serving a lengthy sentence of seven years, they thought that I would be pushed to the back burner so they could facilitate the people serving shorter sentences to get their programs. It does not make much sense that they deliver these programs that are effective. They are based on the cognitive model of thinking before you act and thinking about the consequences. They helped me a great deal and they help others, but the delay in receiving the programs is far too great for it to have an effect when you first get there.

Senator Trenholme Counsell: Michael, there is an immediate demand, an immediate crisis. I know something about people who are in withdrawal. How is the withdrawal managed?

Mr. Flaxman: Usually by the time you end up in a federal institution, you have detoxed in a provincial environment.

Senator Trenholme Counsell: Oh, yes, I see. Of course. That makes sense. If you go to the local jail for x-number of days or weeks, is there some acceptable medical treatment to help you through that?

Mr. Flaxman: There is. At the Don Jail there is a medical wing where they will supply — for example, I was coming down off heroin and they supplied me with valium and clonidine, low doses, but at the East and the West, for example, if you go withdrawing from heroin, they throw you in the hole.

Senator Trenholme Counsell: That is what I was afraid I might hear.

Mr. Flaxman: This is how different institutions deal with it.

Senator Trenholme Counsell: I think we can certainly make some comments about this. Can I ask David a question? I am very interested in the Assistant Cook Extended Training program because in my province of New Brunswick, I hear all the time that for our young people who now finish high school because of integration, one of the biggest problems is that there is very, very little in the way of educational opportunities for them in our community colleges, et cetera. You have just finished your first year of this, I gather, or the first semester or term. Can you expand on this: how this came about and whether this is a model? Are there other training programs like this in Ontario, for instance, that you know about?

Mr. Reville: I think we have invented this program. I think it is unique for a number of reasons and I would be happy to tell you a bit about it.

Senator Trenholme Counsell: Yeah. I think it is very important.

Mr. Reville: The program has been developed in response to the difficulty people with mental health and addictions issues have in paying for the kind of training that they require — that is one — and in getting training that is sensitive to their needs. They might have been out of school for a long time, for instance, or they may have some learning deficits that need to be addressed. Quite a number of them have confidence issues or feelings of terrible inferiority that need to be addressed.

One of the reasons why this program works we believe is, first of all, it is free. Second of all, it comes with a Metro pass. That means people do not have to pay for transportation. Their uniforms are supplied. Their tools and knives are supplied, and there are what we call job coaches. In addition to the chefs and nutritionists who teach the skills and theories, the program employs a number of coaches, each of whom works with a particular number of students to try and figure out what kind of accommodations they might need to be successful.

I want you to know that the first cohort of students had a lower drop-out rate and higher marks than the regular cohorts of students at George Brown. We are extremely pleased with what survivors and recovering addicts have been able to achieve.

Senator Trenholme Counsell: This program is just, I should not say just, but is for survivors and recovering addicts. It is not for young people with intellectual challenges?

Mr. Reville: It could be. The program we designed happens to address the unemployment issues that survivors and recovering addicts have. I am sure this approach would work for others, but it was developed because some of us working at the Centre for Addiction and Mental Health were trying to implement CAMH's new strategy about client employment. This was one of the strategies up with which we came.

Senator Trenholme Counsell: You said extended training program. Is it individualized? It might take somebody four months to do it. It might take somebody else eight months. Is there individualization in terms of working your way through it?

Mr. Reville: The program is a semester longer than the regular program and includes a placement in a restaurant, hotel or hospital where people actually work in the trade for 120 hours. At the end of it, they actually get a certificate that is valuable in the marketplace. They get an Assistant Cook Certificate.

Senator Pepin: Mr. Quinn, I hope that it has been a long time since you have been to Montreal. I am a Montrealer and after the description you made of the centre, I hope that, since that time, we have a better centre, but as you say there is no centre like yours anywhere else.

Mr. Quinn: Not that I am aware of.

Senator Pepin: Also, you say you have 10 places. You answer calls, and you can meet with people, but what about people who call and who are in crisis? Could you direct them somewhere? How does it work? The people who are referred or who call your centre — we know it is non-medical but maybe some time you may have an emergency, someone who is in crisis. What do you do with those cases?

Mr. Quinn: If it is an emergency situation and someone's life is at risk, we would call 911 and involve emergency services. That happens very seldom. In a year of 1,500 calls a month or 18,000 a year, we get probably less than 20 calls where we have to call emergency services.

Once somebody has decided to call us, they are looking for help. If we can spend the time with them, we can probably avoid having emergency services called for them. We get about 600 calls per year from hospital emergencies who have people that have showed up at the emerge and they are choosing not to admit. They refer them back to us so they have a place to go rather than home.

Senator Pepin: You are able to make it with 10 places only?

Mr. Quinn: Well, yes, but no. A lot more could be done. I think one of the things that needs to be brought out, and Becky talked about it a bit in the last panel; poverty issues are the issues that are predominant in terms of what people call us and need help. About 30 per cent of the people who call us are homeless and housing is an issue. A large number are in substandard housing, and financial issues and a variety of other things are causing them to go into crisis.

Senator Pepin: Mr. Reville, you did not mention any, let us say, discrimination against the people who go and visit your centre, particularly the ones that are involved in the survivor business. Is it possible that you are able to have people who do not feel discriminated against?

Mr. Reville: I think stigma remains a very serious problem. I know that in terms of A-Way Express Couriers, there was a time in Toronto when there were some incidents where people were being pushed off the subway platform by people who were said to have mental health problems. Our couriers use the Toronto Transit Commission, TTC, system and they felt very anxious during that period of time because they themselves are people with mental health problems and they felt that the stigma had increased because of the anxiety people had about being pushed.

We do believe though that the best anti-stigma program you can ever have is to see a person who is a survivor doing well. When we see our couriers on Bay Street delivering important packages, it is an anti-stigma program that cannot be beat.

Senator Pepin: That is wonderful. That means that they still face acidity to find a job but if they have more confidence in themselves, maybe it is easier. If they are ordered to a place, or you send them to get a job, then those people are aware of the difficulties of the mental patient.

Mr. Reville: One of the features of survivor business that makes them different from programs where people are placed is that you can stay in a survivor business as long as you like. For instance, there are some people who have worked at A-Way Express for 18 years including the bookkeeper. People like working in survivor businesses but people also gain confidence by working in survivor business and go to work in the main stream. Survivor business is not going to be the answer to unemployment but it is a very good answer to building community for people who have lost it, and it is a good answer for people who make some money and get back into that habit of working.

Senator Pepin: That is very good. Mr. Flaxman, you mentioned in your presentation a separate institution in the prison and that I understand. Also, you were saying about the services offered to people who want to stop using drugs but we all know that it is much, much easier to use drugs when you are inside. When you speak about a separate institution, do you mean if there were some, let us say, kind of a house or a department outside, maybe on the same ground as the prison, but it would be only for people who want to stop using drugs, and maybe they can accept more and it will be easier. Is that what you had in mind, or did I misunderstand?

Mr. Flaxman: When I was in prison I was a member of a community within the institution called River Hill Therapeutic Community, and it was a self-contained living unit in which drug-free offenders tried to live. For the most part it was a great program except when we, as individuals, left the living unit to exercise and take time in the yard, we were confronted with triggers when we saw the known drug dealer, and the temptation was there.

The idea behind a self-contained institution is to maintain a recovery-oriented community. On the living unit it was easy to do but once we left that living unit and mingled with the other offenders in the institutions, it became much more difficult for a lot of us.

Senator Pepin: And maybe I misunderstood, but you were speaking about counsellors who helped you to go through, and you say that they were former policeman or something like that. Do you believe that people like you, if you were paid, could do it and maybe it will be better accepted by the inmates?

Mr. Flaxman: I was referring to what corrections refers to as paraprofessionalize. They take workers from one part of an institution who want a job change, they want to do something else. They will retrain them to, say, deliver programs. In the eyes of an offender or an inmate, that is just a make-work project for the unions. That is where we were coming from. Even though the programs helped me, for the majority they are still a copper.

Senator Pepin: It is true because they did not go through the experience.

Senator Keon: Mr. Quinn, how do people know about your facility and your program? I know you made an effort with films and so forth, as Dr. Gerstein has said, to create awareness and so forth, but there must be many people who do not know about it as opposed to many people who do know about it who would be greatly advantaged. Is that correct?

Mr. Quinn: I think within the mental health field there are more people that know about it than do not. We hand out cards at various places so that individuals who may need help will be able to use our cards to find us by phone. We do outreach to boarding homes, hospitals and other groups. We have partnerships with a variety of different groups so we can make sure that the groups that are dual-diagnosed or concurrent-disorders know about us as well. Over the years we have not had a problem getting customers. It has not been that we need to go out and do a huge amount of publicity. Certainly, the hospitals are all aware of us.

David did a focus group for us when we were looking at maybe being forced to cut back because of lack of funds. How many groups was it, David? It was 40 or something? About 40 different agencies, groups in the city, came in to talk to him about the centre and what they felt about it so I think it is well known in Toronto. We get referrals from Peel Region and York Region, and phone calls from New Brunswick, among other places, who have gone there to visit and called back. Knowing about us is not a problem at this point, and not having enough is more than a difficulty.

Dr. Gerstein: You would be interested to know that nearly every year the graduating class from the medical school in Toronto comes on a tour because there are outreach programs.

Senator Keon: Mr. Flaxman, and perhaps, Mr. Millstone, you can join in this — I realize your specialty is family law but perhaps you could make a contribution to this. It seems to me that particularly for the young person who has a criminal conviction, their real problem starts when they get out. For example, I know they cannot get into medical school. I know that they cannot get into law school. I know that they cannot get into engineering. I know they cannot get a job with the police. They cannot get a job in the civil service. Most of them cannot leave the country, and they are saddled with this for the rest of their lives.

You mentioned there are many people in there that should not be there. It is a matter of great concern to me that this act of defining a young person as a criminal, when the act, when their crime, may not have been very serious, has a lifetime impact that they cannot escape.

I understand there are appeals sometimes where there can be a change in the status of the individual, but I would really appreciate you talking a bit about life after.

Mr. Flaxman: For me, it was a little different. I got out of prison at 39 and I had established myself in the hospitality community in Toronto where I personally did not have a problem finding employment. However, you are right. For a youngster, say 19 or 20, if you tell him long enough he cannot do things like the list you just went down, it is a self-fulfilling prophecy. He continues to tell himself, ”I cannot do this. I cannot do that. All my avenues are blocked. I have burned all my bridges.“ He or she will turn to a life of crime, or drug use and a life of crime, to support that drug use, without meaningful employment and the stigma attached to not only being a drug addict but an ex-convict as well. It is a double stigma. Fortunately, I never had to deal with that.

Senator Keon: Have you had any experience with it in family law, Mr. Millstone?

Mr. Millstone: It is not necessarily a family law problem. In the young offender work that I have done, firstly, there is virtually no facility available for young people and teenagers who are afflicted with substance abuse. I have been a long-term volunteer at a children's mental health agency here in the city called East Metro Youth Services. It was worse than pulling teeth ultimately to get funding for a program to allow for the hard-to-serve youth that the centre assisted to have an addiction program for teenagers. They would then get involved in the Young Offender system in this province. On their releases, while it would not be a secure custody, the group home facilities and the open custody facilities are not equipped to deal with the substance abuse issues for a teenager which are much different than adults because young people are looking at a longer lifespan. I was able to look back at some history and then look forward, but for young people to look forward for the rest of their lives and have to think about clean and sober or harm reduction is incredibly difficult, and those facilities are not in existence. The impact of substance abuse on family law and family life is another whole area that would occupy hours.

Senator Cochrane: Dr. Gerstein, last evening I was lucky enough to meet and sort of interview a special educator here in your city by the name of Mary Gordon. She was the one that introduced me to your name actually. Her whole idea as an educator was entitled Roots of Empathy. This is dedicated to building caring, peaceful and civil societies through the development of empathy in children.

Tell me, how did you arrive at creating this centre using these positive attributes as a foundation of your service to people of mental disabilities?

Dr. Gerstein: It is difficult to answer, in that, I think it is always something that I cannot think of any other way. I know Mary Gordon. She called me this morning. What I found interesting in thinking about it afterwards, that the very same things that she does when she takes a baby and their parents into —

Senator Cochrane: A classroom.

Dr. Gerstein: — into a classroom is work to develop empathy and the words to describe one's emotions. There was a psychiatrist who also worked closely with them at one time and she has been able to convince people in Japan, Australia, the province of British Columbia and so on, but what interested me is that the underlying kind of things we say are practically the same. She has never been to The Gerstein Centre and I know her in a much broader context, early childhood and work with Dr. Fraser Mustard. I guess people that think this way have a tendency to gravitate towards each other. It is not something you are taught, really, but that is what she is able to communicate because there is already beginning to be some evidence that it does have an impact. It is not a very scientific kind of study to say that people are influenced that much over a period of time because they have been exposed to certain things, but there is a sense that it does make a difference. Certainly, in our work with people, there is no other way to treat a human being.

The Chairman: Thank you for that and thank all of you for coming. Sorry we kept you longer but that is because your comments were really useful to us.

May I just remind my colleagues we always allow walk-ons at the end. We have a small number of walk-ons. They are allowed two minutes each. There are no questions from us, and I am going to ask the clerk to have the walk-ons come up.

Thank you all for coming, by the way. That is terrific. Just come and sit down. Ignore the name tag in front of you. You will not be the same as the name tag but you can be whoever you want this afternoon. I will simply begin on my right and ask you to do a couple of things. First, push the button on your microphone, and then identify yourself and give us your couple of minutes of wisdom. Then, we will move along the list. Go ahead.

Thank you very much for doing this. I know a lot of people find this difficult but from our point of view, getting first-hand experience, as you can tell from this afternoon, is really helpful to us, so we thank you for taking the time.

Mr. Neil McQuaid, As an individual: Thank you very much, members of the Senate Committee. I have a BA from Western in '66, and an MBA from Windsor. After graduation I worked for the Department of Public Works in Ottawa and Vancouver. I sold real estate, was a mortgage appraiser at King and Bay, and a mortgage analyst for Industrial Sentence Corporation back in 1974 and 1975.

I started getting sick in 1976. I was out of the work force in 1981. Prior to that, I had done a job as a security guard for three and a half years. In 1981 I did three years of volunteer work for Canadian Institute of Religion and Gerontology, the Children's Aid Society, and the John Howard Society. This would be between 1981 and 1985. I worked a year at each of these agencies, and I was in psychiatric boarding homes between 1981 and 1991. I have lived at St. Jude’s since April of 1991.

I have been working five years at A-Way Express Courier, the first job I could get in 10 years. I have been in a psychiatric clinic eight times. I have been in eight to 12 AA groups, and I have seen six or seven speech therapists. I have been awarded a 10-years Volunteer Service award from the provincial government in 2004 for my work at St. Judes. I have been nominated for the CAMH Courage to Come Back Award four of the last five years. In December of 2002, I was awarded the Queen's Golden Jubilee Award for my work in community and mental health.

It cost $26 a day to live in supportive housing. It is $55 if you count the mortgage interest. It would cost about $800 a night to be in a psychiatric clinic. That is a saving to the taxpayer of $272,000 per person. I have been lucky. I have needed psychiatrists. I do not know where I would be without a psychiatrist.

I live at St. Jude Community Homes. My opinion of the people there is very high. A lot of consumer survivors I found have the equivalent of a Ph.D. in psychiatry. In the competitive job market, the unemployment rate for consumer survivors is 85 per cent.

I am currently at Progress Place. This is my fourth time there since July of 1994. I tried to be at Progress Place before that, but this time I lasted from July of 1994. I have been on the board of directors of four mental health agencies: St. Jude Community Homes, Progress Place, Toronto East Counselling and Support Services and A-Way Express Courier.

The new St. Jude’s is finally coming up. It took five years of planning. There are going to be 29 units and it is near Dundas and Parliament. As I said, it took four to five years to plan.

Marie Currie, the physicist, says that there is nothing in life to be feared, only understood.

Back in 1979, a psychiatrist, Dr. Ray O'Toole, told my parents, ”Neil can make a comeback in society if he wants to.“

I was at the Ontario Municipal Board hearing in August of 2003. I have found psychiatric clinics to be a very difficult environment. I have had a case worker since 1990 and she has really helped me. So, that is it.

Mr. Allan Strong, As an individual: Good afternoon. I am from the Kitchener/Waterloo/Guelph area. My first exposure to the mental health system occurred when I was 11 years and my mother was hospitalized. She thought she heard angels, and saw angels flying around City Hall. From that point, as an adolescent and a young adult I lived and actually tried to tiptoe around her experiences and her hospitalizations.

I will flesh out what I will have to say in a further submission. I was not prepared to present but I want to start by telling a very quick story that happened last fall. Are most of you aware of the furniture store Ikea? Okay. Ikea was running an ad for a sale and the ad went something like this, very quickly: A woman's voice came over the radio and said, ”We are selling this piece of furniture for this amount of money.“ The little annoying Swedish voice that they have came on and said, ”This is madness.“ Then the woman went on to say they are selling another piece of furniture and the little Swedish guy said, ”This is cockamamie.“ Then the woman was closing out saying, ”We are selling this piece of furniture for this price,“ and the little Swedish guy said, ”These people need a rubber room.“

I was outraged. I phoned Ikea and asked them why did you do this? ”Well, we did not mean to hurt anybody.“ I said, would such a situation portraying people with mental health issues, would you do that to any other group in our society? Would you do it to lesbians or gays? Would you do it to people of colour, et cetera? So, why is it permissible in our culture and our society for people with mental health issues to be mocked, and to have prejudice and bigotry towards them?

I would like to read one final thing before I am finished. When the previous provincial government announced its amendments to the Mental Health Act, commonly known as Bill 68, the press release announcing the amendments read something like this: This reform will allow people to get the treatment they need and it will keep our communities safe. This is the Government of Ontario expressing what I believe is a bigoted view perpetuating the myth of the violent patient.

In closing, I would challenge us, we really have to be creative. First of all, I would say the philosopher Goethe said that nothing is more frightening than ignorance in action. Really, we cannot solve today's problems with the same thinking that created them, according to Albert Einstein. I encourage you in your deliberations and in your seeking information and consultations to think outside of the box. Let us try to look at different ways of doing things and let us involve the people that live with these issues 24-7; consumers and their families. Thank you for your time.

The Chairman: Allan, thank you for that. We do look forward to your submission. Afterwards, if you could just give me the dates of that press release, I would love to get a copy of it.

Mr. Strong: Okay. I think I actually have a copy.

Ms. Adrienne Magennis, As an individual: Thank you. Unfortunately, I cannot tell you any funny stories tonight. I am going to tell you why I am here. Today has been a fast-forward of the last 25 years of my life so everything that happened in this room today — at certain points I had to leave. I have buried six anorexics who were my best friends. I am supposed to be dead. I am 43. I was supposed to be dead when I was 30 so I am trying to figure out if I am allowed to go through a mid-life crisis.

On the serious side, I am alive, and waking up has been a horrific experience. I have come a long way. I just want to thank the people that supported me and I want to close with a final statement.

I want to thank CAMH. I want to thank Betty Miller. I want to thank the Empowerment Council. I want to thank the staff there because they have made changes I can tell you but I only have two minutes. I want to thank an organization called Sistering, which, when the hospital could not deal with me, provided me with dignity and a second chance, and they provided me with what we have been talking about today, choice.

I now sit on two boards of directors. I volunteer about 70 hours a week and I am not kidding, because I am on Canada Pension Plan, CPP, and I cannot earn any money, and I do not because I am honest.

What I am asking today is that when I do public speaking, I am shocked by the questions I am getting. I get exactly two extremes. When I am doing Not in My Backyard, a very popular project at City Hall, I can tell you, and I really pray that you look into this because it is affecting the lives of mentally ill people, we have politicians that are doing everything in their power to stop us from building homes. I have been called a prostitute when I stand up. I have been told that I am going to urinate in their backyard. I have been thrown tomatoes at.

After Christmas, I was asked to give another speaking engagement. This time the scenario was a little bit different. It was the Rotary Club at the National Centre of Toronto, beside the Toronto Stock Exchange. It was incredible. There were some of the richest people in Toronto there. People have warned me, do not tell anyone your full name; do not ever talk about money; do not ever say anything about who you are or what your illness is; and do not ever mention the word, ”mental illness.“

I get to the National Club with all my equipment and they put up my name, Adrienne Magennis. Okay. We blew that one. Then I tell my story. Afterwards, I am waiting for these questions about, how do we solve poverty and how do we do this? Do you know what people wanted to talk about in the privacy of this club? One man said to me, ”I have a son who is 24 and he is very depressed. Could you please tell me if I take him to a psychiatrist and get him admitted to a psychiatric hospital — I have a good job — will he have stigma all his life?“

I ask you, after everything you have heard today, how would you ask me to respond? You know what: this is not just in our backyard. This is in our front yard and in our homes and, you know what, yeah, we are doing positive things. I said I think Mrs. Gerstein hit it right on the nose when she said we must be all here because we are all on the same run.

I can tell you when I came into this room today I felt lost. I cannot do it without mentors and helpers. When it came to lunchtime you know who my mentors were, the women who were the senators here asked me to come and eat lunch with them. That is the positive of sharing and I thank you. I only got your report at two o'clock yesterday but I congratulate you and if you can just bear with me really quickly.

Thirty-two percent of individuals with mental illness and addiction seek help. I think I have just answered that question with my experience and Not In My Backyard and the other place and Mr. Kirby and everyone hiring people with mental illness and providing educational and training, and putting them in the public eye. I have to tell people who my name is and, yes, I had a problem and I am trying very hard to get better. We have to cut the stigma, we have to. We have to deal with it and, you know what, we have to have people go out but we need to go together. You cannot send us. You cannot send them. We have got to go together. That is it.

Finally, under the United Kingdom you said that you establish an ambassador bureau comprised of 40 individuals with mental illness and addictions trained to speak to the media and employers. Go for it. Do it. It is great.

Finally, for all the parents for the last 22 years and all the clients that have been through the medication, I thank Betty Miller for her initiative. She brought my mother on October 18 to a forum. She sat her down and she said, “I am sorry that when Adrienne went into the hospital, she was 18. We told you it was your fault.” Our parents need to hear that. Our families need to hear that, not just our community.

I am here because what you decide, what you do, impacts on my life and the life of all of us so please take it seriously. Thank you.

The Chairman: Thank you, Adrienne, for that very moving statement. Next.

Mr. Richard Casey, As an individual: I am a parent of a daughter who passed away in September of 2001. I have to apologize in the sense that I have been following the work of the committee at a bit of a distance, trying to get a sense of the magnitude I think of the task that lies ahead of you.

When our daughter got ill, she was diagnosed with a bipolar schizo-affective disorder. Living in a rural part of Ontario, it was almost next to impossible to find resources to support her. I think what made it doubly difficult is the background that I have as a clinical social worker who has worked in income maintenance, corrections, and a number of the issues that have surfaced since I was able to get here just after the lunch hour. I have come to realize first-hand through our daughter's illness and certainly through her death that the stigma is profound. In kind of a metaphor, in a sense we have a blanket or a patchwork quilt for a twin bed but the country is the size of the king-size-plus, and it is stretched to the limit.

This is reinforced in a very personal journey that started in May of 2003 where I biked across Canada from Victoria, British Columbia to Cape Spear, Newfoundland. I have had a chance to see from a vantage point, that perhaps few in this room would have, the nature and impact of what mental health delivery is having on the average Canadian from coast to coast. There are “have” communities but there are certainly a lot of “have not” communities. Whether you are in the Prairies, in Winnipeg, or down east in some of the isolated fishing villages I was able to visit in Newfoundland, the reality is we have a serious problem.

My hat is off to the committee. I think it is long overdue. I hope it does not become another sort of testament to our paper-writing ability, and sit on a bureau somewhere. That was my frustration with the provincial government in the sense that we have gone through 12 such reviews since the early 1980s, and we are still waiting for Michael Wilson's report to get some level of implementation. Does that mean that there has not been input in terms of some funding back into the system? There has but it has been minimal in comparison to what was taken out over the last 15 years.

I think issues that consumers have raised over the course of the hearing resonate with me in a different way because of my personal experience with the loss of our daughter but also in terms of my professional responsibility and accountability.

When I heard that the committee was actually having walk-ons, I thought what better opportunity to go to my employer and say I will not be in this afternoon, I am going to Toronto. To their credit, who I think is one of the colleges in Ontario, respect what I think we have tried to establish as a family in terms of raising people's awareness. I guess from a very personal perspective, if I can do that on a bike, certainly there is enough will in the country collectively to do it in policy, but it has to happen sooner than later and it cannot continue to be this patchwork. There has to be some network, some system of support that will link us coast to coast.

When we first looked for services, it was actually through East Metro Youth Services in Toronto that we were able to get our daughter into Whitby. The tragedy with that whole experience was we lived 40 minutes outside of London, and the hospital there had the adolescent unit we were looking for, but because we fell out of the catchment area, political boundaries interfered, and we had to move quickly through colleagues to get Kyla transferred to Whitby. That took six months. What we know with early intervention in terms of early-onset psychosis, her best chance for getting some stability was in the first two to six weeks, not six months after the fact, and not being sedated to the point that she did not know where she was being transported to.

We were fortunate enough to get her transferred back to our catchment area where she stayed at London Psychiatric Hospital, which is now part of the St. Joseph's Health Care London, for a little over two and a half years. Put in the context of a 16-year-old in an institutional setting for two and a half years, when she was finally discharged — excuse me — it was coming back into an area that was so resource poor that she ended up dying in the very place that she loathed.

So, please take your work serious. Listen to the members who are presenting and that is all I think I can ask for at this point. Thank you for listening.

Mr. Graham Cushing, As an individual: I work at A-Way Express Courier, and as you have heard a few times this afternoon, it is a survivor-run business here in Toronto.

I am not going to say too much but I just want to say something about accommodation and that one of the big issues is accommodation in the workplace. Regular places of work always fear that if they hire somebody that has a mental health issue, that they are going to be late for work, they are going to miss days for mental health reasons, they will be slow, and other issues.

I have been working at A-Way Express now for close to 17 and a half years. I am the administrative assistant there and have a full-time job. I have been doing this job now for about seven years full-time. Because of the nature of the people that work at A-Way, I have to admit we have a slight incidence of mental health issues and people needing to accommodate; we need to accommodate. We have more reasons to accommodate people. I just want to say that if we can do it, then why can a regular place of work not do it? What I really like to say is that, and that is talking from experience, not fooling around. It is 17 years from working there. I just hope that in your report you can communicate this on a national level. Places like A-Way Express are great and survivor businesses are great but we also want to move into the greater community so that people can get jobs in regular places of work. I think we need to communicate what accommodation really means because the problem is not logistics of accommodation. The real reason that people may not want to hire is stigma and discrimination. So, thank you.

Mr. Richard Smith, As an individual: I have no complaints. I have a very happy life. I was hospitalized seven times but I wanted to go in. The first, I did not want to go in. I did not like it in there because they put you on pills and they made me sleep all the time. After that, I went in again and I have been in there seven times; I think it was three times in Whitby and four times in Queen Street. I was in there two years ago in Queen Street in the hospital but I do a lot of things. I have a great therapist. She really helps me. I have a family doctor who takes care of my physical problems. I have been working for A-Way for 17 years. I am a founding member. I was involved with Ron Valentine about ODSP. There was no ODSP in those days. It was Family Benefits. So far this year — last year I gave at least $1,500 to charity, $1,500. That is a lot of money. I bought two guitars too so I did all right. I play guitar and sing. That is not how I make my money though. I make my money from working at A-Way. I go to church. I give money to the church and I give money to Progress Place. I give money to World Vision, which is — you think we have problems. You can imagine what they have in those countries where World Vision goes. I gave $500 to A and A which is Accident and Ability, which my mother and I founded. How long has that been going on for now anyway, Graham?

Mr. Cushing: Eight years.

Mr. Smith: Eight years. I am going to try to convince Pat Capponi to help me write a book on my life because I think it will be good.

Ms. Roslyn Durdy, As an individual: Before 1958, I had been a top secretary, number one, working for two vice-presidents and general managers of Southam Press. Then I transferred up to London. I got a job working as a secretary to the controller at the University of Western Ontario. My job was to sit in on, and take the minutes of, the board of governors meetings. If I was supposed to be so weird, how come I got that job?

Anyway, I never got into such a mess in my life. I was expected to pick up a job with no business procedure like I had been used to, and I worked up in those other jobs, working up. I did not step on other people. I got it through my own attrition.

Then I came back completely disillusioned with the so-called university treatment and I can go further but I shall not. The only one that made sense to me was the dean of women who saved my sense of my balance. I was expected to pick up a typewriter that nobody else would use and that typewriter was not just an ordinary electric typewriter. You do not even see them, or you never saw them after that. It was a printing machine. It was not like any ordinary typewriter. Well, I survived that after the dean of women came to me and suggested would I type a citation in Latin. I thought, well, this is more my forte and I did it and I was pleased with myself. She came in and she really was so pleased and I thought I went in and gave my notice, but I can go further, I shall not.

I came back to Toronto and I got a job working for the Department of Planning and Development, which at that time in that department the job I got was working for the planning of the City of Mississauga and Elliot Lake and every single official letter that went out, I worked for the deputy minister, three planners, the lawyer, and the consultant. Now, I did not really, I mean, I thought, well, I like my job. I was happy in it and I thought, well, I was knocking myself out but I did not realize it.

Finally, we had a new minister come in and that was fine. I was asked if I would take the position as secretary to him. After being so busy, I was bored out of my skull and, of course, I am one of those people, I am happier when I am working.

A couple of things happened and I quit. It was around that time family things were coming up, something even I could not cope with, and I got to the point one day it was not planned. I just came out of this hospital after visiting my brother's son and his wife when the baby was born. I came out of the hospital and turned right instead of left. I saw this embankment and I was driving my car. I decided to go over that bank and I got right to the edge of the bank. I put it in gear to move forward. It would not move at all. I thought that is funny and I backed up, it backed up. I went to put it forward again, it did not move. Well, it was working fine. I got here. I guess I sort of lost my interest. But, anyway, I backed up and I turned it around, went forward and it did move. I finally got home. Do you know what it was? I was out of oil, but I did not know that.

Anyway, that was about the time when I decided I better go to a psychiatrist. I went to a doctor because I was feeling so sick and I suggested, I said, “Do you think I should speak to a psychiatrist?” She said it would not be wrong because she said, “I know somebody that will help you.” Well, I wept buckets when I finally got to him. I cried. There must have been a puddle under the chair. Anyway, I followed his advice. I lost my self-respect. I started to cheat. I started to lie and I thought that is not me at all. That is not me. Anyway, this is where sex comes into it and it did not fit in my pattern.

Anyway, I ended up eventually in Queen Street Mental Hospital and I guess I was sort of a weirdo. I refused to just be like everybody else, sit like a zombie — and this is the old building — sit like a zombie, excuse me, no telephones, no TV, no radio, nothing. Half of these people, some had been there 14 to 16 years and not even visitors because the family had given up on them. Anyway, I went through some things, unnecessary.

One day just because I started to cry, my parents were supposed to pick me up and take me for the weekend. They had for quite a number of weeks. I was all packed. I did not hear a word from anybody. I did not get a phone call and this was about after lunch, and after supper and about seven o'clock I started to cry. I was lying on my bed. Now, there was a nurse there that had been in charge of that ward all day. She was due to go home at five o'clock and she was still there at seven. I guess she must have been watching me but, anyway, when she found I was crying, she got ahold of the bottle of Paraldehyde and tried to shove it in my mouth. Of course, I spit it out and I did not realize — I closed my eyes. I did not realize she was leaning over me and I spit it out and she said, “You are not going to spit that acid in my eyes.” I said, “If it is acid, what are you giving it to me for?”

Anyway, the next thing I know she grabbed me, got me on the floor, tried to hit my head on the floor and, of course, I have had trouble with my back. Way back in 1951, I had been hit by a car —

The Chairman: Roslyn, we do have to go in a minute or so, so can you wind up?

Ms. Durdy: Sorry, I will try and give you the last thing. Why is it that I was dumped out of that hospital after accomplishing something in 1959? Dr. Gerstein can tell you about it because I became the secretary of the patients’ hospital council. There were things done there that if they had been done 46 years later, you people probably would not be in the mess you are.

The Chairman: Thank you for coming.

Ms. Durdy: But I was going to say, why is it seniors are treated as though they have not got a brain in their heads, because I am 84. Not much wrong with my memory.

The Chairman: May I thank all of you for coming.

May I just remind my colleagues that we have a very full day tomorrow so we will start at 9:00 sharp. Thank you very much. Thank you everybody.

The committee adjourned.

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