Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue 5 - Evidence - February 15, 2005 - Morning sitting
TORONTO, Tuesday, February 15, 2005
The Standing Senate Committee on Social Affairs, Science and Technology met this day at 9 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 Chronicle Herald 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.
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.
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 Pépin is a nurse — and I do not know anything about health.
Senator Pépin: 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 Pépin: 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 Pépin: No.
Mr. Powell: I hope that helps a little.
Senator Pépin: 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 Pépin: 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 Pépin: 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 of the Family Council, Centre for Addiction 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 Pépin: 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 Pépin: 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. Chairman. 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.
The committee adjourned.