REGIONAL GERIATRIC PROGRAM OF METROPOLITAN TORONTO
TORONTO MAYOR'S COMMITTEE ON AGING
FAMILY SERVICES CENTRE OF SAULT STE MARIE AND DISTRICT
THE COMMITTEE RECESSED AT 1203.
FEDERATION OF ONTARIO FACILITY LIAISON GROUPS
CANADIAN DIABETES ASSOCIATION, ONTARIO DIVISION
ADULT PROTECTIVE SERVICES ASSOCIATION OF ONTARIO
CONTENTS
Thursday 13 February 1992
Advocacy Act, 1991, Bill 74, and companion legislation / Loi de 1991 sur l'intervention, projet de loi 74, et les projets de loi qui l'accompagnent
Regional Geriatric Program of Metropolitan Toronto
Dr Michael Gordon, geriatric specialist
Ontario Hospital Association
Wilma Dare, chairman of the board
Carolyn Shushelski, senior counsel
R. A. Stradiotto
Toronto Mayor's Committee on Aging
Harriet Smith, chair
Christine Hurlbut, member
Family Services Centre of Sault Ste Marie and District
Mary Tasz, adult protective service worker
Federation of Ontario Facility Liaison Groups
Margaret Paproski, president
Janet Allingham, secretary
Peter Delsnyder, treasurer
John Propper
Canadian Diabetes Association, Ontario division
Peter Harvey, chairperson, social issues committee
Adult Protective Services Association of Ontario
John Gearin, adult protective service worker
Maria Van Hoeve, adult protective service worker
Don Weitz
STANDING COMMITTEE ON ADMINISTRATION OF JUSTICE
Chair / Président(e): Cooper, Mike (Kitchener-Wilmot ND)
Vice-Chair / Vice-Président(e): Morrow, Mark (Wentworth East/-Est ND)
Carter, Jenny (Peterborough ND)
Chiarelli, Robert (Ottawa West/-Ouest L)
Fletcher, Derek (Guelph ND)
Malkowski, Gary (York East/-Est ND)
Poirier, Jean (Prescott and Russell/Prescott et Russell L)
Sorbara, Gregory S. (York Centre/Centre L)
Sterling, Norman W. (Carleton PC)
Wessenger, Paul (Simcoe Centre/Centre ND)
Wilson, Jim (Simcoe West/-Ouest PC)
Winninger, David (London South/-Sud ND)
Substitution(s) / Membre(s) remplaçant(s):
Akande, Zanana, L. (St Andrew-St Patrick ND) for Mr Morrow
Curling, Alvin (Scarborough North/-Nord L) for Mr Sorbara
Also taking part / Autres participants et participantes:
Auksi, Juta, Ministry of Health
Bentivegna, Guiseppa, Ministry of Health
Fram, Stephen, Ministry of the Attorney General
Spinks, Trudy, Ministry of Citizenship
Clerk / Greffier: Freedman, Lisa
Staff / Personnel: Swift, Susan, Research Officer, Legislative Research Service
The committee met at 0944 in committee room 1.
ADVOCACY ACT, 1991, AND COMPANION LEGISLATION / LOI DE 1991 SUR L'INTERVENTION ET LES PROJETS DE LOI QUI L'ACCOMPAGNENT
Resuming consideration of Bill 7, An Act to amend the Powers of Attorney Act; Bill 8, An Act respecting Natural Death; Bill 74, An Act respecting the Provision of Advocacy Services to Vulnerable Persons / Projet de loi 74, Loi concernant la prestation de services d'intervenants en faveur des personnes vulnérables; Bill 108, An Act to provide for the making of Decisions on behalf of Adults concerning the Management of their Property and concerning their Personal Care / Projet de loi 108, Loi prévoyant la prise de décisions au nom d'adultes en ce qui concerne la gestion de leurs biens et le soin de leur personne; Bill 109, An Act respecting Consent to Treatment / Projet de loi 109, Loi concernant le consentement au traitement; and Bill 110, An Act to amend certain Statutes of Ontario consequent upon the enactment of the Consent to Treatment Act, 1991 and the Substitute Decisions Act, 1991 / Projet de loi 110, Loi modifiant certaines lois de l'Ontario par suite de l'adoption de la Loi de 1991 sur le consentement au traitement et de la Loi de 1991 sur la prise de décisions au nom d'autrui.
REGIONAL GERIATRIC PROGRAM OF METROPOLITAN TORONTO
The Chair: I call this meeting of the standing committee on administration of justice to order. I would like to call forward the first presenter from the Regional Geriatric Program of Metropolitan Toronto. Good morning. Would you please identify yourself for the record and then proceed.
Dr Gordon: I am Dr Michael Gordon and I am a geriatric specialist. I am here on behalf of the Regional Geriatric Program of Metropolitan Toronto. I would like to thank the committee for giving me the opportunity to present. I have a special thanks because of the advocacy position of the committee. Last night when my furnace broke down at 8 o'clock and they told me it would take eight hours to get it repaired, I said, "Please help me; I have to be at the Legislature in the morning," and it only took six and a half hours and I did not come as an iceman. I just wanted to let you know that there has been progress.
I am here presenting because I and many of my colleagues on the regional geriatric program that consists of geriatricians, psychogeriatricians, that is, geriatric psychiatrists, primary care physicians and a whole range of health care providers have concerns about the legislation as written. You have a copy of a document, which I will not read because it would take too long. It is here for your reference.
We feel of course that it is laudable to protect people who are vulnerable and it is important society takes a role in making sure people's needs are met. But we are very concerned that while doing this we should not undermine the basic premises on which care is based. With the increasing number of elderly people in the population and the increase concomitantly of those with cognitive impairment due to a wide range of illnesses such as Alzheimer's disease, multi-infarct dementia, that is, multiple strokes, Parkinson's disease, we will be facing over the next two decades an inordinate number of people whose mental function is compromised because their brains are afflicted with diseases for which we have no effective treatments at this point.
We know at present, and this will continue into the future, the primary care responsibility of this group of people is left to informal care givers, that is, devoted and committed family members. It is on the basis of this family network and fabric that society can be assured that people with these problems will be looked after. Certainly in Canada and most of the western countries in which there are data it is clear it is the primary family care givers that supply the predominant amount of care.
The feeling of many of us who have looked at this legislation is that, although perhaps not intended to do so, it seems to assume the worst of care givers and caretakers, that is, they cannot be trusted to carry out their mandate that is part of their family responsibility or their mandate that is part of their professional responsibility. The feeling is if that is the assumption on which we have to work, then as a society we have very severe problems because we will never be able to legislate how people feel about each other, care about each and how families are devoted to each other.
One would have to imagine some kind of external force interposing itself in all kinds of family matters and dynamics if we could not believe that family members essentially cared for each other. For anybody who has been responsible for someone he loves who has been dwindling and failing because of cognitive impairment, one is aware of the enormous sacrifices and sometimes burdens of responsibility that are taken with great commitment by these families.
We feel the legislation as written creates a bureaucratic nightmare -- that is the best word I can use -- which although it may help a few marginal people who do not have networks and who do not have ways of getting people to speak on their behalf, the price that will be paid is the undermining of the wellbeing of the great majority who do have a network of informal and devoted care givers.
Of the three major acts, Bills 74, 108 and 109, our major concern is with the Advocacy Act. We feel this creates an unnecessary layer in achieving the goals of caring for people, that the advocates -- without going into the details while speaking; it is in the written material -- have extraordinary powers. I said humorously at a meeting, but as I look at it I am not sure I was all that off, that they have powers I do not believe even the RCMP have in terms of their ability to enter on the basis of suspecting there might be a vulnerable person. I know English is a peculiar language. The word "might" has many meanings, but "might be vulnerable" sure opens the door to many situations. I think that to give such powers to any group of people should be a concern.
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Another concern in the legislation, as I and people we have spoken to understand it, is it seems the liability and accountability of the advocates are very modest compared to their potential impact. Most of us who are professionally based care givers have an accountability that is professionally based, a liability that is both professionally and legislatively based, and they are much more circumscribed than seems to be the case for a group of people who with whatever the training could be imagined for them might have enormous impact. We feel even if there were an Advocacy Commission and advocacy legislation, that amount of limited liability and accountability would not give sufficient direction and counterbalance to the activities of the advocates as they are described.
One of the major concerns is that the advocacy legislation and how it interfaces, for example, with the consent to treatment would interfere with the basic, ordinary clinical care that all of us in the geriatric field are involved with. It would not only obstruct ordinary decisions on which the care of this group of people depend, but also potentially disrupt the fabric of relationship and trust between family members, health care professionals and their clients/patients. At times it might be impossible to assess a person's meaning of words by somebody who is not really trained in the field and could take things at face value: in other words, words as they are said as opposed to what they might mean.
I want to give a little anecdote because since I read this legislation I have been looking very carefully at my particular practice, which is exclusively a geriatric practice, to see what the potential involvement might be. Last week I saw a family. The son immigrated a year and half ago, leaving his two parents who were European-born to join him after he got settled. After he left, he heard from his mother that his father was quite despondent about what was happening. Everybody attributed it to his leaving, so plans were hastened for them to come. It took about six months. He got established. The family came, that is, the mother and father. That is the only family they have; the rest were destroyed during the Second World War.
They came, and with the adjustment of coming, the family, that is, the wife and the son, did not really pay attention to the details of what was happening to the father who was beginning to fail. After a while they realized these were not just adjustment problems so they went to their family doctor and explained what was going on. The family doctor felt that something unusual was going on and referred him to me.
I saw him. It took between 20 minutes and a half-hour for this gentleman to relax sufficiently to actually converse with me. It is hard because I cannot stand up, but towards the end of the 20 minutes he started holding my hand. That was a sign of trust. I spoke to him in a combination of four languages, none of which I speak very well, but none of which he spoke very well either because they were all the most recent languages he learned. He spoke many languages. I was not sure if his mother tongue was Russian or Hungarian, neither of which I speak. The history was taken in four languages, with the son interposing Hungarian. At the point I realized that clearly this man was suffering from cognitive impairment, it was 4:30 in the afternoon. They had travelled a good distance to get to me. I wanted to do some blood tests and perhaps stop a medication he had been put on.
According to the legislation as I understand it, I would not be able to do that. I would have to first inform him in writing -- I am not sure what writing I would even inform him in -- of what my assessment was. Then presumably on a cellular phone or something I would call somebody who either was sitting in my office, which would be unlikely, or riding around on a motorcycle and could come hopefully immediately to help me with this. That person would presumably inform him -- in which language again I am not sure -- what his position and rights were.
Meanwhile the wife was crying as she realized how poorly he was doing in his mental status and how impaired he was, because they had never done it formally. They knew there was something wrong, but they had not watched the process of formal assessment of cognitive function. That whole process I would have had to stop for no reason, because I do not believe anybody could have communicated to him or got much more information than me or another physician who is knowledgeable in the area, and that a simple continuation of his care would not have been possible without invoking this network of activity. Even something as simple as saying, "Stop taking the medication you're on," officially I could not tell him that. I could not tell his wife because of course he never designated her as a formal substitute decision-maker. Why would he have? They have been married for 50 years. I presume he assumed that she would be, or the son.
That was an example, and I have had multiple similar examples that I think would reflect the impediment that ordinary care would suffer by this legislation.
I think we can achieve, and I think the group I represent can achieve, many of the goals of vulnerable people by building on the structure that already exists, without creating a new superstructure. Part of the basic structure is the informal structure, which is the family and the care providers and the care givers that already have accountability, professionally and legislatively. On that we can build in, based on structures that already exists within the institutional sector, within the community sector, ways of making sure that those who may not have family advocates or may have families that are not as attentive as they might be can be adequately looked after, and that their rights and autonomy, when this is what the issue is, are respected.
In the handout I gave you there is a quote, which I would like to read, from a professor of philosophy from the United States, which was quoted in the Gerontologist. It says:
"Although it must be acknowledged that some families abuse or otherwise fail to service their elderly members, it will not do to use that as an excuse to ignore preferences and to undermine the privacy and empowerment of families to serve their own by good faith and surrogate decision-making.... we need more research not only on family abuse of the elderly, and more research and data not only on how and when family involvement in surrogate decision-making goes awry, but also research on how well family surrogate decision-making works without formalization and appeal to the judiciary and.... under what circumstances surrogate decision-making is accomplished within the social nexus of families so that we are no longer surprised or suspicious when an informal system of tradition and custom works well."
We have made a number of formal recommendations to the committee that we feel will fulfil the goals. They are written. I will just quickly go over them.
We feel the proposed advocacy legislation should be cancelled. We do not think it can be tinkered with and made to work better. We think it is basically flawed. It is cumbersome, expensive and creates another level of bureaucracy that is not required to fulfil the needs of vulnerable people, especially those with cognitive impairment.
We think there are alternatives, such as strengthening and increasing the mandate of the office of the official guardian or legal aid system or some combination thereof. Consider giving them an advocacy role so that patients and families in need or health care professionals with questions or problems can turn to them for advice and assistance in some kind of structured manner, not in this urgent suddenly-stopping-what-you-are-doing manner, because this is a long process. Cognitive decline may take many years.
Reconsider the implications and judgement of giving powers to advocates who clearly will not have the training, background or professional framework to merit such an extreme degree of power. I will not finish reading that one; it is a long one.
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Codify -- this seems to be in the acts but not as clearly as I think it could be -- the chain of substitute decision-makers as exists within the hospital setting and let everyone know in the province that this is the law, that unless they do otherwise they will have, if they are no longer competent, a decision-maker made on their behalf following a structure. If they are not happy with it they can, in advance, do a directive health care proxy, as exists in New York state now -- I have just done it with my family in New York; it took them five minutes -- to designate somebody instead of the person in that chain.
Simplify the substitute decision-making process. Simplify the consent to treatment and acknowledge that there is a range of decisions where consent is implied, from routine to invasive clinical activities, that do not have to be dealt with in same way. In this act the standard for consent is very high and one must question the reasonableness and necessity to create a standard of consent, usually assigned to invasive and clearly risky related interventions, for routine clinical activities, which in general take place in most circumstances by assent and for which there are potentially major benefits and very marginal risks, such as blood tests, stopping medications, introducing medications, non-invasive imaging etc.
Give the health care practitioner the responsibility of formally informing, with appropriate documentation and a system of professional audits, patients of their right and opportunity to see and have advice from some system of advocacy such as we suggested before, through the public guardian, through legal aid -- some system without creating a new one.
Enhance long-term care facility advocacy by mandating this function to family and/or patient advisory committees where they have a clear role in dealing with concerns and have an external responsibility and accountability so that they will not be in a conflict of interest.
Strengthen and enhance the presently existing coroner's geriatric and long-term care committee so that it can be not only reactive but proactive in defining standards of care and needs to assure that people who are in need are cared for properly.
Most important, support the role of families, other care givers and health care professionals through education and access to assistance so that they can fulfil their crucial role as the fabric and foundation on which all care depends. Major portions of these acts in many ways conflict with the philosophy and expectations expressed in the present government's redirection of long-term care, which depends so heavily on the support and commitment of the very same family care givers who we seem to imply should not have that degree of responsibility. Thank you very much.
The Chair: Thank you. Each caucus will have about four minutes for questions or comments.
Mr Sterling: I do not disagree with what you are saying. I think the advocacy system under Bill 74 is a real problem. It is going to be an expensive endeavour not only for setting up the commission and providing the advocates but for you as a physician to treat a patient because there are going to be delays, there is going to be extra paperwork, there are going to be a lot of different administrative hangups occur because of advocates, which is not going to lead, in my view, to a care system much better than it is at this time.
The problem, I guess, that we face politically is that there are many groups out there that insist that there be an intrusion. There is a mistrust of the health care provider and somehow they have won the day in terms of bringing this legislation forward. How do we placate them in dealing with advocacy services to some of the people who have been taken advantage of in the health care system? You mention the legal aid system; you mention the guardian's office. I think we heard earlier this week that the guardian was estimating that under this system it was going to cost something like $42 million more for his office under the present situation. How do you trigger the mechanism for an advocate to come into a situation where there is not a supportive family?
Dr Gordon: Clearly there are groups of people in all walks of life who do not have the kinds of supports one would expect, be they children or be they people with a cognitive dysfunction or physical disabilities. We can introduce, as I mentioned, in the formal care-giving system such as nursing homes etc, a system where advocacy is built in with an external accountability.
This happens now, I can assure you. I work in a large centre where the social workers have very strong feelings about their role as advocates. One could say, "Yes, but they work inside a facility so they have a conflict of interest," but if one introduces an external accountability they are responsible for, it allows them to have that role without feeling they are jeopardized in terms of their work inside. You do not have to create a great deal to do that. These people are already working there. You just have to make sure their mandate is understood.
I think it is a real shame that there is a mistrust of the health care providers of this province. I know doctors get it, fine, but we are talking about social workers, nurses, occupational therapists and physiotherapists. Most of us in health care have gone in there because we are intrinsically advocates; that is why we do it. Of interest is that this law for people like myself is a bonanza. For general psychiatrists, this is a bonanza. We are going to be getting consulted five times as often as we are now to ensure that somebody has been second-opinioned. I could probably retire next year.
But to me that is not a good way to use a system. We want to make sure that those who are at risk can be identified. We have an accountability to identify people we suspect are at risk. Right now, for example, if I see somebody who I believe cannot drive because of an illness, I am responsible for reporting him or her to the motor vehicles office. I am liable. Once people are liable to do that, they have an accountability. You can build that into systems that already exist for those people who are marginal or who are vulnerable.
I think for some of the unregulated facilities one might have to look at how you would regulate them in a way that does not overtake or necessarily impose a great deal of financial cost and make sure there are standards and expectations of the rooming houses, of the retirement homes -- the places that right now are not regulated -- so they too have an accountability. I think that can be accomplished, thereby meeting the needs of many of the people who are believed to be at risk without creating a whole new superstructure that will in fact interfere with the everyday care of the vast majority of people.
Mr Poirier: I am looking at your third recommendation. Obviously you are quite correct that the vast majority of the people may be well cared for and whatever, but what about those where there is a definite case of abuse who do not have any family whatsoever? When you say, "Therefore, eliminate the ability of so-called advocates under any system or structure to enter homes/institutions, or have access to records in any way that threatens privacy, security, confidentiality," in principle, if I am the devil's advocate, do you not think that maybe goes a bit far for certain cases where there is abuse of somebody who has absolutely no family whatsoever?
Dr Gordon: Yes.
Mr Poirier: Should not somebody somewhere have this power to do so?
Dr Gordon: Yes, and it should be given to them with due process; in other words, if somebody suspects that there is something going on, as we do in the police system. The police cannot just walk in even when they know something is going on; they have to get a warrant. There are things they have to do. We should be able to facilitate when there are reasonable grounds. I am not talking about extreme grounds but reasonable grounds where somebody has said, "Boy, there's something funny going on there."
I grew up in New York. We had apartment houses and the reason you knew somebody died was the smell. That is a tragedy. That should not happen. Autonomy allows you to have the right to rot, and that is an extreme. With reasonable suspicion there has to be a mechanism by which people will -- whether it is through a warrant; that is in the act in one form -- be able to go in. If records have to be obtained, there is a mechanism for that. We have it in the Coroners Act now. There is a system to do that. You do not have to create a new system, I believe, in order to accomplish that. I am not denying there are people at risk, as there are children, and we have ways of dealing with it. We must deal with it. You do not want to leave people who are not being cared for vulnerable.
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Mr Poirier: I agree with you, but then why do you say "under any system or structure"? From what you are explaining, it does not jibe with what you --
Dr Gordon: Well, that threatens privacy, security, confidentiality. When I say "threatens," there has to be a process with, I would say, a warrant. The way it is written, and maybe I am reading it wrong, if I as an advocate suspect someone might be at risk, I can go in. Now that is pretty presumptive in terms of rights. If I or whatever the advocate is believes there is something there, I should be able to present my case to whoever it is that I believe and then get a warrant.
Records mean the subpoenaing or the warrant to get records. There is something in the act that says you can remove records under certain circumstances from an institution. We never let records out. A photocopy is one thing, but removing the original record? We never do that, because once you have done that you do not know what is done to the record. We just never allow it, yet this act says you could do it. When I say that threatens privacy, people should know that you cannot just walk in unless there is some due process. Security is the same thing, and confidentiality. Until there is a due process one should not be allowed to enter because there is a belief that something might be wrong. That is an enormous degree of power.
Mr Poirier: Obviously the manager of the institution under whatever system sees somebody, whoever that may be, come in and grab the dossiers and the seal and take them away as the police will do sometimes. Obviously the manager of that institution will feel that it is an invasion of privacy and confidentiality or whatever. But then, too bad, right?
Dr Gordon: No, no. If the process is there, and the coroner's office has it now, that you believe something has gone on, there is a process that says you can do it. Whether your manager likes it or not, you do it. I have been on the receiving end of that. I have wrapped up many files to go to coroners' reviews, because that is part of being in long-term care. If somebody says, "I'm not happy," then the files go. That is due process. Somebody has to have permission to ask for it. Somebody has to say, "Something's gone on there." I have no problem with that. I have a problem with somebody, based on an individual's suspicion, having enormous powers.
Ms Carter: I am really quite distressed that you are targeting Bill 74, the Advocacy Act, in particular because I really do not see your grounds for doing that in spite of all you have said.
First of all, as we all know, there are people who do fall through the cracks, who do not have family, friends, networks of support and so on. Let's face it, just now and again the family or the facility where the person is may be mistreating them. You compared the advocate to the RCMP, but the situation is that advocates can go to where the person is because they need to get together with him, and this is the only way they can do it. They cannot force entry. If entry is refused, they do have to go and get a warrant. The only power that advocate has is to listen to the person, to hear his views, and to try to follow those up to carry out the wishes of that person.
I really do not see the threat that you are suggesting in this context. In fact, I would say that if you do not have a system of this kind there is going to be an ongoing body of people who are going to fall through the cracks and who are not going to be heard from and listened to.
At the moment, as you know, we do have an advocacy system in the psychiatric hospitals. I understand that this works quite well, but on the other hand there is a problem because they do in a sense lack independence. They are responsible to the Ministry of Health. I feel that, far from setting up an extra bureaucracy, as you said, we are creating a body of people who will be at arm's length from any ministry. The commission will be independent, although I know it is being set up initially by the Ministry of Citizenship, and this will give those people much greater freedom to advocate for that disadvantaged person.
As regards records, I understand that they would only be able to look at records of a person with the consent of that person. So I do not see the threat there.
As I say, I am mystified as to --
Dr Gordon: Let me read it, because maybe I am misreading. It says, "An advocate is entitled to enter a facility where there are or may be vulnerable persons, without a warrant and at any time that is reasonable in the circumstances." Subsection 21(1) says, "An advocate is entitled to enter, without a warrant and between 8 am and 8 pm, premises where he or she has reasonable grounds to believe that there is a vulnerable person who wants or could benefit from the services of an advocate."
To me that gives a lot of freedom to advocates to enter, if they believe. The concern I have when you say, "If the person gives permission," is that a good part of my practice is dealing with people with cognitive impairment. Getting a person with cognitive impairment to agree to something is not hard. They can agree to all kinds of things; they can say all kinds of things. If we are basing an action on somebody's request -- they may request to go back and start their business.
I look at the training. Many of us take many years to have the sophistication of understanding how to tease out what is meaningful, what is delusional, what is hallucinatory, what is not sound in terms of people with cognitive impairment. I had a patient recently whom I had to report to the Ministry of Transportation: "I want my car back. Why have you done it? First of all my wife took the keys away from me." If anybody walked in and listened, he was very eloquent. He said, "Look, I walked in here. You took my keys away. I've been driving for 25 years. I've never had an accident, da-da, da-da." How does somebody know that what that person says is valid? I know it is not valid. I have assessed him over a period of --
Ms Carter: We are not asking the advocate to make a judgement, but I think it is reasonable that patients, whether they are delusionary or otherwise, can have as you might say an independent line to the wider community, other than the people who are already there, if they so wish. Maybe it would be justified, maybe it would be in some cases delusionary and that would be followed up.
Dr Gordon: If you took it at face value you would say, "We will have to have another assessment for this person." From my point of view, I am going to retire probably a wealthy person, because there will be lots of people who will say things that people can take at face value, and then you will say, "We will get another opinion and another opinion." Who will be the final opinion-maker, since clinical opinions are opinions based on various degrees of expertise and we often disagree with other people's opinions? What will be the final gold standard of opinion? I do not know.
I believe that, as written, this gives enormous powers that are far beyond the powers necessary to deal with the people who clearly fall through the cracks. I do not believe you make legislation to deal with people who fall between the cracks that impacts negatively on the vast majority of people who do not fall through the cracks.
The Chair: Thank you, Ms Carter. Mr Malkowski would like one quick comment.
Mr Malkowski: I would like to respond to some of the comments you made. You have said that there a few marginal people out there who may require advocacy, but just to be very upfront, coroners' reports and the O'Sullivan report have both come out very strongly that the advocacy system is essential. We have heard from advocates groups as well as consumer groups that have come out very strongly in support of the need for advocacy. Are you saying that vulnerable people who have been exploited, who have suffered neglect and abuse, are not entitled to a broad advocacy system, and it is something you do not need? Would you not agree that there are people who are in need of advocacy?
Dr Gordon: Is this to me? I agree completely, and I said there has to be a system, but the system does not have to be created that negatively impacts on the large group of people who have a system of devoted care givers. You create a system for those who do fall through the cracks, who do not have a structure to support them, that you make sure is there and is utilized. There are ways of doing it without creating a new infrastructure.
Mr Sterling: I asked on Monday if the Ministry of Health had any kind of statistical information regarding the need for advocacy of vulnerable people. I have not received a response whether there is any statistical information.
The Chair: I have just been advised that it will be forthcoming.
Mr Sterling: Okay, fine.
The Chair: Dr Gordon, on behalf of the committee I would like to thank you and your colleague for taking time out of your busy schedule to come in this morning and give your presentation.
Dr Gordon: Thank you very much.
Mr Sterling: Mr Chairman, at this juncture I would like to submit to the committee notice of three motions to amend Bill 109. The government seems reticent about taking any leadership with regard to suggesting amendments to this bill, and I think it would be much easier for proponents who come before this committee to have suggestions for amendments so that they can talk to real suggestions as to how these bills can be made better. I would ask that these be delivered to the various members of the committee, and I would also ask that each proponent who comes before the committee be supplied with a copy of these and that future proponents be supplied with a copy also.
Mr Morrow: On a point of order, Mr Chairman: Maybe I am not understanding the situation right, but would that not be done during clause-by-clause?
The Chair: The amendments can be submitted at any time.
Mr J. Wilson: The sooner the better. We will not have to debate the points over and over.
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ONTARIO HOSPITAL ASSOCIATION
The Chair: I would like now to call forward the next presenters from the Ontario Hospital Association. Good morning. Could you please identify yourself for the record and then proceed?
Dr Dare: I am Wilma Dare, current chairman of the board of the Ontario Hospital Association. I thank you for the privilege of presenting the views of the association on these three important pieces of legislation. I would also introduce our senior counsel, staff of the OHA, Carolyn Shushelski. I am conscious of time limitations and I will try to adhere to same.
Quite simply, the Ontario Hospital Association believes that as a package, these bills are unworkable. In principle, we are not opposed to the creation of a system of patients advocates, we are not opposed to the guardianship mechanisms proposed in Bill 108 and we are certainly not opposed to strong consent to treatment legislation. We are in fact on record as being fully supportive of these goals. What we are opposed to is legislation whose main effect will be to plant a barrier of bureaucracy between our patients and the care and comfort to which they are entitled. That is our primary objection, but I must also point out that in this age of ever-tightening health budgets, implementation will result in expanded hospital costs.
I will discuss each bill in turn. The intent of Bill 74 is to give a voice and powers to individuals who have often been ignored, and no one can quarrel with that. But like its two companion bills, it is a prime case of overkill. All of Bill 74, the Advocacy Act, seems to be driven by an assumption that hospitals are careless or casual about the vulnerable person who may be under their care. This is definitely not true.
Think about it. The Advocacy Commission and the corps of advocates envisioned in this legislation are to be given an extraordinary range of powers. The act does not even specify who is to deem a person to be vulnerable. Is it to be the advocate? You can look from one end of the bill to the other without finding any mechanism by which complaints about the advocate's actions and decisions may be registered.
An advocate will be entitled to walk into a hospital where there are or may be vulnerable persons. The advocate will be able to enter the facility without a warrant and at any time that is reasonable in the circumstances. There is no provision in the act to explain what is reasonable, nor in whose opinion it is reasonable. Further, it is an offence to hinder or obstruct an advocate.
Such wide powers raise very serious concerns. As the act now stands, an advocate can simply walk into a facility and seek out vulnerable persons. Given the broad definition of "vulnerable person," almost any person in a hospital setting could be considered to be so. Confrontation between health practitioners or other hospital staff, such as security personnel, and advocates as to what is reasonable in the circumstances must be avoided. It is in the interest of all parties that a cooperative atmosphere be maintained under these circumstances. Quite clearly, some reasonable and probable ground rules should govern an advocate's right of entry to a facility such as a hospital. Also, the head of a hospital should be given notice of an advocate's intention to visit a vulnerable person.
Apart from the extraordinarily wide powers implicit in individual advocates' access to facilities and records, the commission's mandate is to effect structural changes at the legal, social, economic and institutional level. To this end, it is proposed that the commission be given broad regulation-making powers.
Again, one can appreciate the intent behind the legislation, but please look at what this proposed legislation actually is: It is an act that gives very wide powers to one group, and that is a dangerous thing to do, no matter who is involved, without some system of checks and balances.
I urge you to read our brief on Bill 74.
The Substitute Decisions Act, Bill 108, provides for powers of attorney and other guardianship mechanisms that may be obtained by or on behalf of incapable or potentially incapable people.
What I wish to bring to your attention this morning, however, are the serious concerns that emerge when this bill is seen in the light of proposed Bill 109, the Consent to Treatment Act. As it is now written, Bill 109 places an unfair and unreasonable onus on health practitioners to determine whether any of these guardianship and power of attorney measures obtain in the case of their patients. Even in non-emergencies the time required to determine whether a guardian or attorney under a power of attorney for personal care must be consulted and, if so, who this person is and where he or she might be found could result in delay of treatment causing needless distress and suffering.
In short, the legislation is impractical and unmanageable in a hospital treatment setting. Faced with this quandary, the only mechanism we can conceive is the establishment of a registry system. Such a registry would have comprehensive information concerning the holders of powers of attorney and other guardianship instruments. Realizing this would entail a great deal of expense and resources, I ask if this is feasible.
In emergencies, it could be a matter of life or death. Section 23 of Bill 109 stipulates that a practitioner may not administer emergency treatment if he or she has, first, reasonable grounds to believe a patient has a power of attorney for personal care containing instructions to refuse consent to treatment of the kind proposed, and second, no reasonable grounds to believe that the patient has subsequently expressed wishes that would override the instructions.
This section also provides that emergency treatment cannot be given if the practitioner has, first, reasonable grounds to believe that the person, when capable, expressed a wish to refuse consent to such treatment, and second, no reasonable grounds to believe that the person expressed other wishes that would override the original wish.
What is a practitioner to do in the by no means unlikely situation where he or she has to decide within minutes whether to save someone's life with, say, intubation to restore an airway or another medical procedure? It is unreasonable even to ask practitioners in such circumstances to hunt around for legal documents like powers of attorney. But Bill 109 is also requiring them to decide what a patient may or may not have wished. What are reasonable grounds in such circumstances? What if there are two relatives present, one saying the patient wishes one thing and the other saying the patient wishes the opposite?
We also recommend that the government conduct a public awareness campaign to alert people to the provisions of Bill 108 and its intentions and the advisability of obtaining powers of attorney and/or other instruments well in advance of a crisis.
Now to turn to Bill 109. As with Bill 74, our quarrel is not with the intent of the legislation. Rather our complaint is that the Consent to Treatment Act is unworkable legislation. There is a very real possibility that patients, particularly the elderly and frail, will end up having their civil rights protected to the hilt while they are denied the immediate care and comfort to which they also have a right.
Consider the case of a senior suffering from senility, who has injured her wrist in a fall. She is brought to a hospital. Her injury is not an emergency as defined by Bill 109. Even so, she is in pain and in need of treatment. She is also conscious and obviously incapable. Therefore, the physician must advise her of her rights under section 10 of the bill.
This would mean that the health practitioner must advise the patient of the finding of her incapacity to consent to the particular treatment and must give the patient written notice that he or she is entitled to meet with an advocate and make an application to the Consent and Capacity Review Board. The health practitioner must notify an advocate. The advocate must meet with the patient and explain the effect of the finding of incapacity and the patient's right to make an application to the board. The advocate's explanation is sufficient even if the patient does not understand it. If the patient chooses to exercise these rights, the health practitioner cannot administer the treatment until the board makes its decision and any appeals have been disposed of.
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This woman needs her wrist fixed. To be sure, her rights must also be protected, but must she suffer pain and other distress while that is happening? If Bill 109 is passed unamended, that will be the fate of many men and women like her.
This is no rhetorical exaggeration, and to further illustrate what I mean here I refer you and your committee to appendix A of our brief. It contains a number of scenarios describing situations that could very realistically arise if Bill 109 is passed in its present form. The scenarios are the work of an OHA task force of physicians, nurses and hospital administrators who were asked to consider the legislation in light of their everyday, practical experience.
Besides the woman with the injured wrist, you will find the example of the young child who refuses to be given a needle. Under Bill 109, he is demonstrating a wish to refuse consent on his behalf. By definition, he is incapable with respect to the treatment. Thus, the physician must advise the child of the finding, give him written notice that he is entitled to meet with an advocate and make an application to the Consent and Capacity Review Board.
An advocate must also be notified of the finding and meet with the child to explain the effect of the finding and his right to a board hearing. If the child wishes a hearing, treatment cannot be given until the board gives a decision and any appeals have been disposed of, or the period of appeal has elapsed.
Much of this bill seems to us to have been written with major decision crises in mind: such situations as parents' disagreement with courses of treatment that their children sincerely desire, cases where the terminally ill do not wish to have their lives artificially prolonged, cases in which patients have ethical or religious objections to certain courses of treatment and situations where the appropriateness of institutionalizing a person is in doubt.
No one can quarrel with the need for the law in these areas to be spelled out more clearly. However, Bill 109 is written so that it not only covers these areas but also spills over into routine hospital operations with the result that patients may not receive and practitioners may not deliver the immediate care and comfort that is needed.
In the scenarios attached to our brief you will find a number of other ways in which Bill 109 could very well result in patients not receiving treatment that is necessary. In one of these cases you will see how hospital staff may be restricted from protecting disoriented people from wandering away from a hospital into potentially dangerous situations. Surely that is not the intended effect of this legislation. We certainly do not think it is.
Accordingly, the focus of our recommendations is the achievement of legislation that simultaneously protects patients' rights and does not deny them the immediate care and comfort to which they also have a right. Achieving this is a matter of addressing the fact that the most serious practical flaw of Bill 109 is that it ignores the wide grey area between situations that are, without doubt, emergencies and those that are quite clearly not emergencies.
Part of the remedy is the revision of the definitions of "emergency" and "treatment" and other sections of the bill so that health practitioners will not be prevented from administering basic assessments, care and treatment to patients like the woman with the injured wrist. Of course her rights must be protected, but is there anything fundamentally wrong with a physician providing basic treatment for her wrist and relief for her pain and distress while informing the advocate at once that the patient is incapable and treatment has begun?
This would serve three ends: The immediate care and comfort to which the patient is entitled would be provided, the chance of her condition worsening would be greatly reduced and the advocate could be on the scene early enough to make a timely consideration of the patient's overall treatment in terms of her rights and wishes.
This is not an abstract situation. Some hospital emergency departments see as many as 200 patients a day. Many are elderly and confused. Others may be intoxicated or under the influence of drugs. Most need treatment, and putting the full weight of the patients' rights machinery between them and what is largely routine treatment will serve no one at all.
I pose a question to you and the members of your committee. Is there really such suspicion and distrust of hospital and health practitioners as is implicit in this legislation? I am not saying that things do not go wrong and that patients do not need strong mechanisms to protect their rights and pursue their grievances. Speaking as this year's chair of OHA and as a physician, I am rather saddened and, to a degree, resentful of any assumption that the thousands of men and women, professionals, who work in our health care system have no concern for their patients and their patients' rights.
Quite recently, a member of my staff was talking to a person interested in this legislation and that person expressed surprise that health professionals and hospitals were so upset about Bill 109. "What are they worried about?" this person asked. "Bill 109 has made a provision that if health practitioners follow the rules, they won't be held liable if they do not treat the patient." This, to us, is a chilling example of the negative atmosphere that is clouding this legislation, the assumption that patients need to be protected from those who work in our hospitals.
Further, we have concern that the protection from liability provisions are not consistent or adequate. For example, failure to provide necessaries of life is an offence under the Criminal Code of Canada, but it is not clear whether health practitioners are protected from such criminal liability by acting according to the rules of this bill.
We are appearing before you to protest the legal barriers that would prevent health practitioners from providing proper treatment promptly. Therefore, although OHA appreciates the well-meaning intent of this legislation and strongly agrees that patients deserve the fullest protection of the law, we must conclude that these bills do little to further those goals.
We urge most sincerely that this committee take the option of recommending the withdrawal of Bill 109 as constructed so that we may start afresh. As it stands now, this legislation will serve only to make our health care facilities places where caring and treatment of patients is secondary to bureaucratic and legal niceties. With few exceptions, patient care is not a matter for the courts. Only by doing that will we begin to create laws that are truly in keeping with our patients' rights, wishes and individual interests.
I thank you for your attention, and I would be glad to attempt to answer any questions your committee members may have.
The Chair: Thank you. Each caucus will have about three minutes. Mr Curling.
Mr Curling: Thank you, Dr Dare, for coming in. I know it is no surprise if we tell you that many of the things you have said now have been said by others here.
I am very happy to know that you have also seen the necessity of having these bills and these laws put in place, the Advocacy Act and the Substitute Decisions Act and the Consent to Treatment Act. You said they are necessary, but you emphasize right through, like many who have come here before, that the way it has been done is very adversarial. It needs proper definition. It creates barriers, because of the bureaucracy in which they have been created, all through the three bills themselves, especially setting up the commission.
Do you feel that the bills are a bit too hurried and have not been thought through? Why I say that to you is that during the presentations, many of us on this side -- not on the government side -- had to ask for clarification from the counsel and the parliamentary assistant many times. Do you think it is a bit hurried and that is why it is like that? I think the government has good intentions. Just as you say, these acts are well-intentioned but are extremely flawed. Do you see it that way?
Dr Dare: I am in no position to say whether it was hurried or not, because I do not know how much time and effort was expended. I do say that those who have been involved in drafting these bills have not had the practical experience of the treatment setting in a hospital, with which we are most concerned. I think it would be outside my privilege to say that they were hurried, but I do say they are flawed, because they are not taking into consideration the practical application of the provisions of these pieces of legislation.
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Mr Curling: In the short time we have, I wish to ask you some questions. There is a part in here where you said the Consent to Treatment Act is unworkable legislation. Now every piece of legislation is about people and how they interact in society, and there is a process in which they should behave. Many of your colleagues from the medical practitioners' area stated that as they walk through the legislation, they find an insurmountable bureaucracy, that they could not get through the heap of paperwork and decisions to be made.
If it is unworkable, do you get the impression then that they have not walked through this process, to say, "Here is a patient" and "Here is someone"? In the emergency department, as you said, 200 would come through some days for whom you would have to get permission and find out if it is okay to proceed. Does the doctor have the necessary authorization? Do you see chaos in the emergency areas because of this legislation? I am using the word "chaos" without any qualification; I just say "chaos."
Mr Poirier: Ordinary chaos.
Dr Dare: Ordinary chaos. Above and beyond what often exists in the exigencies of a large patient load in an emergency department, it does, in my view, impose requirements on the health practitioners in that setting which are adding to the burden of their decisions and the urgency of their care when it is unnecessary to protect the rights of the patient. A simpler procedure and the relief from some of the intricate bureaucratic provisions of this bill would still accomplish the purpose without this overkill in terms of procedures and legal niceties, as we say in our brief.
The Vice-Chair: Mr Poirier, did you want to comment?
Mr Poirier: Yes. Do I have some more time? That is good.
The Vice-Chair: If you make it brief, please.
Mr Poirier: As usual. We are quite cognizant of the nature of your worries with the bill. You are definitely not the first one from the medical profession to come forward with this. We are very sympathetic to you and we think you are quite correct in the difference between the theoretical application of the bill and the practical aspect of what happens in reality in the emergency situation. Thank you again for bringing that forward.
Mr J. Wilson: As has been said, a number of your concerns have been brought to our attention, not just in the three days of hearings we have had, but of course your staff have done an excellent job of meeting with each and every one of us and ensuring that we are aware of many of the problems in the bill.
Because you have so many recommendations in your brief, it is difficult to pick out one, so I am just going to ask you a question, because I think you are dead-on and show a lot of courage when, near the end of your brief, you asked the question, is there really a great deal of suspicion out there about the service provided by our hospitals and our health care practitioners? I am worried too about the underlying philosophy or the philosophical underpinnings of this legislation. Is it having a direct effect on morale now in the hospitals and among your association, or will it, if enacted as is?
Dr Dare: I do not say it is having a direct effect on morale now. It is only one evidence of a climate that surrounds us at the present time. Certainly I can speak for the hospitals, as chairman of their association, and also for health care practitioners, that they have enough confidence in their aims and objectives not to have their morale affected by any such evidence or assumptions.
Mr J. Wilson: That is good to hear, for the sake of the system. One of the recommendations I am very much interested in is, as you say, the need to establish a 24-hour registry with the public guardian and trustee. Would it work without that?
Dr Dare: I really do not know how the health care practitioner -- and do not forget that the responsibility is on the practitioner who is going to give the treatment or enter into the diagnostic procedures -- without that ease of reference is to abide by the legislation that requires him to determine if there is reasonable expectation that the patient has a substitute decision-maker or a power of attorney for personal care or has expressed a wish to refuse the treatment contemplated or has expressed the wish that might override these other instructions to guardians. At best, the result of such an investigation, even if time permitted, would be very speculative without an accurate record somewhere.
Mr J. Wilson: Yes. I think of the Via Rail disaster and how emergency rooms must have been swamped with unconscious people. I wonder how the heck you deal with it.
Dr Dare: It is easier if they are unconscious, Mr Wilson.
Mr J. Wilson: That is true.
Mr Wessenger: Dr Dare, I wonder if you could explain how presently, under the current common law, the consent rules work in the hospital particularly with respect to emergency care and with respect to non-emergency care. I particularly draw your attention to the fact that I understand the common law treatment cannot be given without a voluntary informed consent.
Dr Dare: I will refer to Carolyn for the actual hierarchy of eligible people to consent on behalf of patients.
Ms Shushelski: If you would like me to, I could just elaborate on that now. Just before I say this, I am a lawyer but I am also a nurse, and I worked in the emergency department in downtown Toronto for five years, so I have some knowledge of the practical side as well as the legal side.
The problem existing now is we understand you cannot technically touch them. If you touch somebody, technically it could be a battery. You do need an informed consent to do certainly interventions with the body: surgery, diagnostic procedures where there could be serious material risks, that kind of thing.
I think it is fair to say that when people come into the hospital, what happens now is we are not being sued for giving them a bed bath, we are not being sued for washing the blood off their arm in order to see and to assess what the damage is on a wound. We do go ahead and do certain interventions with an individual. Otherwise, you could not even get to square one to do an assessment, to do a diagnosis. It is absolutely essential that you have the ability to comfort someone, to position him so that he is comfortable. Otherwise, what would happen in an emergency department?
If this legislation goes in as enacted, it says you cannot give care to someone if he is incompetent unless you have a substitute decider to consent on his behalf, which is fine if you have a substitute decider standing there ready, willing and able to consent and you do not have to go through the rigmarole of finding out, is there an existing guardianship, is there a guardianship instrument, is there a power of attorney for personal care, is there a power of attorney? What happens now is you act on the substitute decider's decisions. If they are not there, you do basics. You would never do surgery or anything like that without a proper consent.
I hear what you are saying and I understand, but I think we have to recognize what practically goes on in our hospitals. In order to comfort someone, to not deprive him of humane treatment, you do get on with certain aspects. We would like to see it formally recognized in the legislation that there are certain things you will have to do in order to comfort that person and not leave him in a situation where he is suffering.
Mr Wessenger: If I could clarify that for my own perspective, what you are saying is you would like to see something in the act that would permit palliative care to relieve the pain in the situation with respect to patients? Is that what you are saying?
Ms Shushelski: I think our brief addresses it. What we tried to do is make recommendations that -- it is so complex right now. This is our first attempt at dealing with our membership and putting out a brief. What we tried to do was draw to your attention the existing problems.
We see three areas that need to be addressed: a better definition of emergency treatment; the 12-hour provision is too restrictive, we think, so we would like to see a definition that really addresses the immediacy of a situation. We would like to see some kind of provision that would provide for the practitioners to be able to give necessary care and certainly on the consent of a substitute decider -- we in no way want to avoid that -- but also the recognition that when people arrive at the emergency department they may not have anyone with them. To find out if the public trustee can consent if there is no relative will take time and we have to recognize that; or even for an advocate to visit will take time. That interim, that interval must be addressed. If we are not allowed to do that, then we certainly do want to see something that is going to protect our health professionals in hospitals from provisions in the Criminal Code where they would be failing to give necessaries of life.
The Vice-Chair: I want to thank you for that fine presentation and thank you for coming.
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Mr J. Wilson: Mr Chair, while we are changing deputations, I have a question for the parliamentary assistant.
The Vice-Chair: By all means, go ahead.
Mr Curling: Which one? There are so many of them.
Mr J. Wilson: I am not sure. There are three here. When I get Mr Malkowski's attention, I will ask the question.
In the brief by the OHA it does say they understand the government's amendments have been drafted and they have been asked to review these amendments, but to date they have not been made available to the OHA. My question to the parliamentary assistant is, does the government have amendments drafted to this legislation, and, if so, what groups are receiving them and what groups are not receiving them?
Mr Malkowski: I would have to repeat that the government has not as yet written any amendments to the legislation. We are first listening to all the presentations in order to be fair, having an open discussion, but the point is that we have not actually drafted any new amendments. I would like to refer to Paul Wessenger, if he would like to add to that.
Mr Wessenger: The only thing I can indicate is that I have not seen any draft amendments to any of the legislation.
Mr J. Wilson: Okay. You want to stand by those answers, do you?
The Vice-Chair: Thank you very much.
R. A. STRADIOTTO
The Vice-Chair: The next presenter is R. A. Stradiotto. I want to welcome Mr Stradiotto. If you can read that into the record and then proceed, you have one half-hour.
Mr Stradiotto: Thank you. Maybe I should start with who I am. I am a lawyer and I hope in terms of my credibility that does not make me vulnerable.
Mr Poirier: It makes us vulnerable.
Mr Stradiotto: I have delivered a CV to the clerk; it is quite extensive and I want to touch on it because you ought to know who is speaking. I have been a lawyer for 30 years. I have had a few honours in my life. One of them was Queen's counsel. I have been inducted as a fellow of the American College of Trial Lawyers. But the one honour I would like to bring to your attention, and it is perhaps relevant, is that my governing body conferred its highest award, its medal, upon me. I think it did so for my contribution to the area of education in law in the health field. I am a past president of the Advocates' Society, which is a society of the senior trial counsel in Ontario. I am a past president of the Medico-Legal Society of Toronto, which is a unique society in North America made up almost half and half of doctors and lawyers. I worked on a number of committees in my time dealing with guidelines to consent.
I am the senior lawyer in a firm in which there is an identified health law group. I am the leader of that group. We have for years been gratuitously publishing a newsletter for the hospitals and the health care community. I just pulled out one of the editions. It happens to be a 1989 edition. I happened to notice that it deals with consent to treatment in the hospital setting, consent to sterilization of an incompetent, a special case, and consent to treatment, which statute applies?
For 30 years my life has been predominantly involved in health care law issues. I have been part of conferences sponsored by the OHA, by various institutions. I have been consulted by this ministry's task force. I have been working on a voluntary basis on amendments to the Public Hospitals Act.
There is not a day in my life when I do not receive an emergency call dealing with consent matters: an anorexic 16-year-old who is at the emergency ward of a hospital, she does not want to be admitted but the doctor thinks that not to admit is life threatening; a 15-year-old who wants an abortion, mother is with her but does not want her to have it; a 15-year-old who requires a liver transplant; a 15-year-old whose state is inconsistent, at times there is competency, at times there is no competency. At times when there is competency, there is a refusal to the treatment modes that are required in liver transplants, at times there is not. I deal daily with these types of problems.
I cannot even begin to quarrel with the government's aim to protect the wellbeing and rights of individuals who because of mental or physical impairments may be temporarily or permanently unable to understand their rights or express their wishes. I am convinced beyond any doubt of the need for legislation to provide the citizens of this province with a coherent body of principle to govern when and how individuals who lack or may lose the capacity to control their lives will none the less be treated with competence, with dignity, with compassion in a way that by any fair or objective standard would be judged to be in accordance with their wishes and best interests.
My difficulty is, and I must confess to this because I encountered it once again last night, that despite the credentials you have before you, despite the benefit that I have had over 23 years of a formal education and close to 30 years in health care law, despite summaries of these legislations that have been prepared for me by my juniors and associates, and discussions I have had with my colleagues, I again last night ran out of steam before I was able to digest the complex processes, the guidelines, the directions, the prohibitions in the labyrinth that has been woven by the interrelated bills before you.
One thing did jump out at me and that is, the families must not have had much input into the process or if they did, they must not have been heard. I want to be clear. I appear before you not as a lawyer, not as an advocate representing a group or an association. I appear before you as a son, the second of 11 children in a family in which the parents are still alive, elderly, their 60th wedding anniversary was celebrated last Sunday; and for my brother who has Down's syndrome and who is living with my elderly mother and father. The three of them together with their weaknesses and their strengths support one another and manage because of their love, loyalty and respect, but all three at any given time would fit the category of incapable.
I also appear before you as a father blessed with a wonderful wife of 25 years and two boys who are 21 years old, a family that had the gift of a very special son who died as a result of complications following surgery on April 11, 1990, in his 16th year, a son who had Down's syndrome. I want to speak for a moment about him, difficult as it might be, because it is pretty pertinent to what I want to bring to your attention. He was a gift of immeasurable riches which our family was most privileged to enjoy. If it could be said that he was at a disadvantage in this society, it was only in his inability to be self-centred or duplicitous. His spontaneous joy and his zest for life and outpouring of love was disarming. He occupied the centre of our family's activities, bringing laughter and tears of pure joy and infused our family with a bond of love.
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I believe that our family, and many families with whom our family has had contact, who also have persons who are vulnerable in them, was not unique, not unusual, not the exception but the norm. It is in the very nature of the family, at its heart and at its soul, that it will love, support and nourish its members and the response is magnified in proportion to the need of any particular member. I had the pleasure of observing the consistency and the intensity of the love my two sons and my wife had for my son who was handicapped.
Now where does all this fit in? My son had a problem, as well as being handicapped in the mental sense. He had an unusual condition known as tetrology of Follet and a mitral stenosis. As a result of these conditions, in his life he had to undergo a process of catheterization seven times. He had to undergo two major bypasses, the first when he was two years old and the second when he was five years old, open-heart surgery in 1981 with a valve implant; he had to be reopened and it all had to be done again in 1985 and a third time April 11, 1990. He did not survive that one.
I look at this legislation and what it would have done. I have the benefit of the background and training to look at it and I have difficulty understanding it. When my son had to go to the hospital my wife and I would prepare him, particularly my wife -- you have to understand that these people have a tremendous capacity for certain things and a tremendous lack in other things. It is not always consistent. There is an awareness and a lack of awareness.
When you take him to a hospital and he confronts a health care provider, the health care provider may think he has demonstrated a wish not to be treated when he was under 16, and he could do that. When he was over 16, or thereabouts -- and there was never an emergency, by the way. He was not rushed to these processes because they were emergency situations. There were periodic times when his condition and his colour would show that electively it might be time to renew the valve. So we do not fall into the emergency provisions.
Any health care practitioner talking to my son Shane would probably conclude that he was incapable. A great deal of that may be as a result of the difficulty to communicate. Under all those circumstances we trigger this legislation. Bring in the advocate. Unless my son refuses -- and how a stranger would know that he is refusing or not leaves me in pure wonderment -- this whole process is invoked. I do not want to say too much about this, but I really have a problem of understanding the questionable premise on which this legislation is in part based, that an advocate shares the status by his condition and therefore is somehow specially gifted to have insight in judgements in these matters, just by that simple fact.
I am concerned about what intimate time-worn contact the advocate has had with the vulnerable person that qualifies him or her to interpret ahead of family or friends, what specialized training, what professional contact. The advocate is neither a family member nor a friend particularly. On what basis can advocates presume to have this greater understanding of and greater sensitivity to the vulnerable person's wishes and needs than do families, friends or long-time health care givers who have come to know him or her, as many of them knew my son and had come to understand him?
Please understand that I am not against the system of advocates. It is no answer to me. You cannot begin to justify what this legislation does by putting to me the questions, "What about those who fall between the chairs? What about those who don't have a family to support them?" as I and my son have been benefited. Why do we not deal with that? Why do we not direct our efforts at that? Why do we not establish our target and pass legislation dealing with that? A system of advocacy, fine, but that is not all this has done. This has gone far beyond keeping everybody in after school because somebody talked.
It is not an answer to me or my wife to say, "Why didn't you solve your problem and establish yourself as an appointed guardian or go through the board process and become an official representative?" It is not that simple. I wanted my son to have the right as he matured, with the potential he had, to give him all the scope of making his own decisions. Why would any government ask my wife and me to go through processes like this with the costs incurred and what it is doing to society? What an Orwellian concept. Then you remember that you are dealing with an individual who had tremendous capacity and was not consistent in every facet, not even on a day-to-day basis, and you ask us why.
This is my plea to you to consider what this legislation does in such an unnecessary fashion. This legislation is an affront to the family. Its attitude, tone and approach are an affront to competent, caring health professionals and sensitive, loving families. The legislation demeans the family; unintentionally, but it does. It emanates an aura of distrust, a lack of faith and belief in the values and integrity of the family unit in our society. The process will unnecessarily become a source of great -- "irritation" is hardly the appropriate word, and at a time in a family's life when it is filled with stress and grief. What government would want to do that?
You have a purpose, you have a need. Father Sean enunciated that, but please do not tell me he wanted this. I was quite familiar with what he wanted. This is not what he wanted. This is not an answer. You have heard speakers before you. I read this and I am always amazed at what society does to itself. It passes legislation in which we will need a lawyer every 10 feet as we walk down the street. Why do you give us such authority and strength? Why do you compound the costs? This is a godsend to the litigation bar. It is an absolute gift, a source of activity that will -- I will have to double my department, there is no doubt about it, in no time at all, at a time when the health care system's need for resources and funds is so painfully, desperately obvious to us all. Please send it back. It is overreaching. It is an overreaction. It is overkill. It is not what Father Sean O'Sullivan had in mind. Thank you.
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The Chair: Thank you. Briefly from each caucus, about three minutes.
Mr Poirier: What the hell can I add, anybody being insensitive to that. I am sure Father Sean, seeing this, must be really turning upside down. How the heck you can go from a noble principle and screw it up this way, and coming up with your background to see this, obviously you are not coming here to waste your time or our time.
I appreciate your coming forward. I can only hope the government is going to be sensitive to that, because we certainly are. Like you, we like the principle. We recognize that some people are falling through the cracks. We should address our energies to that. But as I said, if even you as a lawyer can come here and tell us this is a godsend for litigation, who the hell can tell us better than that? Eight ears on that side, take it away.
Mr Curling: I want to commend you for coming forward with that very sensitive presentation. Actually I hope the government and the drafters of the legislation realize that the legislation has intruded into the family, which is the basis of any society, where love starts, where love is thwarted. I know the government party itself has stated that it itself is one of the parties that believes in the family. I think that, as someone said, this is a good idea, but it took a wrong turn. I hope they are quite sensitive and do not destroy the family in this process.
Mr Stradiotto: If I may just add a word, if we all had this choice put to us, who ultimately should make the decision that would best express the wishes and interests of persons who are vulnerable, a judge, a physician or a medical committee, an advocate or a public trustee, or members of a loving, caring family in conjunction with their medical advisers, spiritual advisers or advisers of their choice, I hope it would take everyone in this room about half a second to say: "Surely the latter if it is available. Let's encourage it and, when that is not available, let's make what is required available." That is not what this legislation does. It does incredible harm to that latter group. That latter group is the group in which the vast majority of people we are trying to help exist. We can deal with the others much better than those who are getting added in this legislation.
Mr J. Wilson: I do not have much to add except to indicate that I do not think there was anything in your brief that I or my colleagues disagree with. Many of the arguments you put forward we have heard and have been acting on. In fact, I have tested some of these arguments with my own constituents. They are ashamed that I am here sitting on a committee every day, having to spend $30 or $40 million, when our hospital beds are being closed in the riding. I have not had one constituent come up to me telling me this is a good idea by any means whatsoever. Most of what I have heard has been negative.
I do not even know if I believe in the principle any more, because we have had government after government pretending we have such a great social safety net, pretending we have resources in place in the community to look after people's basic health care needs. We find ourselves here not addressing those problems, but dealing with principles of advocacy and what I see as a huge expenditure. We are trying to play ball, though, because I think the government has made up its mind that this bill is going through in some form. We will certainly keep your concerns about the family particularly in mind in introducing amendments along the way to try and bring the bills around to a more reasonable position.
Mr Winninger: Mr Stradiotto, thank you for coming here today. I note that you have been practising since 1962, so you have considerable experience. You may recall some of the challenges posed over the last 30 years because we did not have a power of attorney for personal care in these kinds of situations.
I would like very briefly to explore with you a couple of scenarios that you have covered. We have two broad categories: one where there are family supports and one where there are not. I do not think you would disagree that where there are not family supports there is a role for the advocate, perhaps an even more enhanced role for the advocate than when there are family supports, and also an important role for personal guardianship in that situation. Would you agree with me in that category?
Mr Stradiotto: I might even go further. I might say that even in the context of family there may be a role of the advocate, but I think the advocate has to first cross the threshold of establishing a prima facie need. The trouble with this legislation is that it is based on an assumed distrust. I agree with everything you say, even in the context that we can find abuse within a family. Families do not always work.
Mr Winninger: Now in the second broad category where there are family supports we might have three subcategories: one where the vulnerable person lacks capacity to consent to treatment or capacity in general, one where the person has capacity and perhaps another case, which might represent the case of your late son, where capacity might be somewhere in between, partial capacity. Now let's say the family supports are there in all these cases and you have someone who is incapable of making decisions for himself or herself. You as a family member would be a preferred guardian. As you know from the legislation, you can apply to the court and be appointed a guardian for the personal care of your son if he lacks capacity. If, on the other hand, he has capacity, sure, the advocate will come in -- at his request, if he wants to see the advocate. That does not in any way diminish your ability or the ability of your family to provide care, does it?
Mr Stradiotto: Why would you ask my wife and me to go through a legal process to take care of our son in the circumstances I have illustrated to you? I have no other answer than to say to you that I think that is a totally unnecessary expense on society, a totally unnecessary imposition on the affairs of a family that is, we think, taking care of our son. Why do you ask me to do that? Next week are you going to ask me to do that for my mother?
Mr Winninger: No. Because your late son wanted to see an advocate, why would you deny him that privilege and protection?
Mr Stradiotto: Whoever suggested I would?
Mr Winninger: That is all I am asking.
Mr Stradiotto: You are asking me to take a legal proceeding. I do not understand what has happened to this government's concept of society if it has decided that my wife and I, in the circumstances I have illustrated to you, should be compelled now to go and take some formal legal proceeding in managing the affairs of our son and our family. Next week for my mother and the week after for my brother and next month for my father?
Mr Winninger: That is your option.
Mr Stradiotto: That is not my option.
Mr Winninger: No one is forcing you to seek guardianship.
Mr Stradiotto: The consequences in this legislation are formidable if I do not.
Mr Winninger: It sounds to me like you are agreeing that if your late son had wanted to see a guardian, you would not have stood in the way.
Mr Stradiotto: Absolutely not.
Mr Winninger: So what is the problem with advocacy legislation?
Mr Stradiotto: There is no problem with advocacy legislation. I have told you, I thought clearly, that I support it entirely. I do not see why this advocacy legislation is necessary in the form it is drafted, that is all. This advocacy legislation is gross overkill and is absolutely a downer for the family structure.
Mr Winninger: If your son was content with the care your family was providing, he would not want to see an advocate anyway.
Mr Stradiotto: I thought I made the point that when I presented my son to a hospital, under this legislation the doctor speaking to him would look at me and say: "He's incapable. I can't touch him." It triggers the process. It is unavoidable under this legislation. That is unnecessary, I thought, and I was trying to point out why to you.
Mr Winninger: If he is incapable --
The Chair: Thank you, Mr Winninger.
Mr Winninger: One last question, one last important follow-up.
The Chair: Mr Malkowski will have to forgo his time then.
Mr Winninger: If he is in fact incapable of making such decisions.
Mr Stradiotto: In whose judgement?
Mr Winninger: You just said "if the doctor finds him to be incapable of consenting to medical treatment." Is it not appropriate that, if you are going to decide on his behalf what kind of treatment is meted out to your son, there be some kind of legal safeguards, formalities in place, ie guardianship, to ensure that substitute decision-making complies with those safeguards?
Mr Stradiotto: I cannot help but say bluntly that I do not understand why you would possibly think that was necessary. To think that is what is happening in our society appals me.
Mr Winninger: You have defended doctors.
The Chair: Thank you, Mr Winninger. Mr Stradiotto, on behalf of the committee I would like to thank you for taking the time out to give us your presentation today.
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TORONTO MAYOR'S COMMITTEE ON AGING
The Chair: I would like to call forward our next witnesses, from the Toronto Mayor's Committee on Aging.
Mrs Smith: Good morning, ladies and gentlemen. I am Harriet Smith and I am chair of the Toronto Mayor's Committee on Aging. I have brought along with me a cohort of mine, Christine Hurlbut, who is going to speak to the other three bills. I will speak regarding the advocacy bill. Christine is the director of the student assistance program for seniors in north Toronto.
The Toronto Mayor's Committee on Aging is -- do I dare use the word? -- an advocacy group that is composed primarily of seniors, but we do have many younger people on our subcommittees who help to advise us. These people are working with seniors and on behalf of seniors. Christine is one of those.
First of all, I would say basically that we have studied these bills and we find the Advocacy Act commendable for its intent. However, we do have a few things we would like to point out to you, most of which are sort of housekeeping items. Let's say that in principle we agree with the intent of the Advocacy Act.
One of the first things I would like to see expanded in this act is the definitions. The Advocacy Act is intended for persons who are vulnerable and I think we need to have a little better definition of "vulnerability." We need better-defined "physical disability," "mental disability," "illness" and "infirmity." These tend to be very open-ended words and we would like to see them more concisely defined.
Second, we would like to see assurance of senior representation on the commission. TMCA would like a guarantee of proportional representation of seniors, that is, persons 65 years and older on the commission, as well as on the advisory committee.
Back in April 1991, the Honourable Elaine Ziemba, Minister of Citizenship, stated to the Legislature:
"Our next step will be to set up an advocacy commission which will operate at arm's length from government. In keeping with our commitment to community involvement, we will form a broadly based advisory committee representative of the disabled and the senior citizens' communities. This advisory committee will nominate candidates to serve on the commission. The commission will also be representative of the communities it serves."
As this bill is presently written, there is no assurance that senior persons will be adequately represented on the commission.
I would like to point out that TMCA strongly advocates that more seniors be used on public boards. There are many of us who are experienced from our past careers. We still have all our faculties, we have time and we have intent and we would like to be used in our older age. I would strongly suggest that seniors be used not only on this public board, but that they also be considered for more public boards. It is our way of paying back our fellow members of society for our good fortune.
TMCA would also suggest that somewhere in the act or in its rules and regulations there be described a system for staggering the initial terms of office. Perhaps this will come in the rules and regs, but we would like assurance that this will be initiated smoothly. It will indicate a perpetuation of the committee without a sudden gap of experienced persons. There should also be rules regarding numbers of absences at meetings to assure adequate interest, continuity and quorum.
Another item in regard to terms of office or functioning of office, considering that disabilities can be cyclical and sometimes inhibit the activities of an individual, is that there should also be some provisions made in designing the membership of the commission to ensure that there is a functioning commission. We are suggesting that perhaps alternatives should be named. There will be times when disabled persons on the commission and even seniors who are presumably healthy will have difficulty in attending, yet there should be adequate attendance to assure proper functioning of the commission.
Last, there is one thing we would hope: that those people who are entrusted as advocates will strive to develop honest, friendly relationships with those persons they represent.
Ms Hurlbut: I was part of a subcommittee which worked on Bills 108 and 109, and very briefly on Bill 110 because of its lack of content, as far as we were concerned. We felt again that it was high time these bills came to fruition. The government in fact was trying to put the concept of living wills and the whole system of potential guardianship into action, but we felt again that there were some holes and some problems with the legislation as it now is consistently.
We are pleased that the bills do provide scope for the individual to make decisions about personal care while competent and have these decisions stand, even though they are not perhaps in written form, and that wishes be recognized as well. However, both in Bills 108 and 109 we felt uncomfortable with the concept that one needed to be 18 to have guardianship of property but only 16 to be able to have guardianship over personal care. We realize of course that people can be parents far under 16 and therefore should have some say in what happens to their young children, but we are just generally uncomfortable with the issue of a 16-year-old having this kind of power.
As Harriet said, we also hope that the advocates will strive to develop honest, friendly relationships with those they represent. It is of course very difficult to put into legislation, as it is difficult to assume by any kind of legislation, that a family is going to be a loving, concerned unit and have the best interests of its members who are incapable at heart at any one time.
Bill 109 also states with some strength the concept of informed consent. However, we also suggest the inclusion in this bill of the following: first, a requirement to give ongoing information to the patient or the patient's representative or the advocate; and second, an indication of the way this information is to be passed on, and possible penalties for failure to give the required information. If a person is having someone's life literally in his or her hands, I think being unable to secure proper and continuing and updated information from the medical community is certainly a large roadblock to making a good decision.
Members of our committee noted having a difficult time gaining updated information from the medical community when a member of their own family was in hospital. Also, section 22, at the very end of Bill 109, protects certain health professionals who give emergency treatment without consent. We felt quite strongly that this should be extended to include ambulance workers, paramedics and others who may in fact be the first people who have to make a decision on the spot about someone's care in an emergency situation.
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Mr J. Wilson: Thank you for the presentation. At the end of your presentation you did mention ambulance workers. It occurred to me yesterday. The question should be asked I guess to legal counsel. Under Bill 109, how does it work in the ambulance in terms of their being required to get written consent? The ambulance staff would not have nearly the resources that the people in the emergency room or the attending physician might have, although that is dubious at this point too. I am sorry to take up your time, but I think it is an important question.
Ms Bentivegna: There is intent, because the act allows for a prescribed class to be added, to put in paramedics or ambulance attendants so that they could therefore use the same rules of consent. If there is an advanced medical directive, that can also be respected if they know of it, let's say if the person does not want to be resuscitated.
Mr J. Wilson: How do they know? They just make every reasonable effort to find out? Is that the point?
Ms Bentivegna: Exactly.
Ms Hurlbut: If I might add to that, on our committee we had several cases of people whose parents had perhaps indicated they did not want to be revived, who were rushed from the home to the hospital where they might have died a fairly peaceful death but the ambulance workers revived them two or three times on the way and this just prolonged it. Again, there was perhaps a lack of informed consent and I realize that ambulance workers have their job to do, but it is a tricky situation. We felt they should at least be covered by the terms in this act.
Mr J. Wilson: Thank you. Both of you mentioned I think quite correctly but perhaps idealistically that it was your hope that advocates would have a strong personal relationship. I guess part of our concern in this area is that you would need several hundred, I would say, more advocates than are currently being envisioned by the government to actually do that. When I think of the hundreds of social workers or welfare case workers we have and their inability to see their clients, some never see them in an entire 12 months, this could be a very expensive system. To work right, I agree they should get to know their clients well in order to be able to express the wishes of those clients.
But I wonder, as advocates for seniors -- I do not think we can ignore economic realities of today and I do not think they are going away. Things may get better, but the underlying ability to properly fund our health care system in the future is now in question. It is in question now and certainly will continue to be throughout the 1990s. Health care is definitely the issue of the 1990s. How high a priority is bringing in an advocacy system which may cost a great deal of money versus ensuring that the proper community services are there to look after your health care needs? It is a value judgement. I have groups tell me that no matter what price, this system has to go in. I have told them something has to give.
Mrs Smith: Can I suggest that you put in place the legislation? Under the financial restrictions of today you can start small, but we know there is a need out there for advocates. At least it will be available for some. It may not be available for all, but at least it will be available for some, and that is better than nothing.
It so happens that we originally wrote this brief back in September, and my opening paragraph in writing this was, "We commend the government for the development of this legislation but wish to emphasize that the legislation must be backed up with adequate budget and personnel for the office of public guardian and trustee to administer it." That goes for the role of the advocates too.
Of course, we know that economic times have changed, but I personally feel that now that you have the momentum on the Advocacy Act, you should not lose that momentum, but keep it rolling and get it into law. If it has to simmer with only a few benefiting because of limited budget, it is still there and can be expanded when moneys become available.
Mr J. Wilson: That is interesting, because we have had other groups saying that if you take half measures, you may cause more harm to the system.
Mrs Smith: I am expressing a personal opinion when you ask this question.
Mr J. Wilson: Sure. I appreciate that too.
Mrs Smith: That may well be, but you know how long it takes to get legislation through. You are looking at a loss of two, three or four years.
Mr J. Wilson: Especially when it is so badly flawed.
Mrs Smith: I would hate to think that we have to lose this momentum we have now.
Mr J. Wilson: Okay. I appreciate your frankness.
Ms Carter: I would like to thank you for your constructive and concerned criticism of our legislation. You have certainly come up with some positive suggestions.
I am just a little concerned that you are not satisfied with the representation of the over-65 group, because in section 15 of Bill 74 there is a list of eight categories of people who would be included in the appointments advisory committee, and that does include organizations representing persons 65 years of age or older. You are one of the eight categories. Of course, being elderly is not itself a disability, and you do not necessarily have any life knowledge of disability because you get elderly. I hope not; I am getting up towards that myself. Also, of course, it is true that elderly people will be or could be represented in the other seven categories, because they are just as likely to come under the other categories as any other person might be. I am just a little concerned that you are not satisfied with that representation.
Mrs Smith: We would just like assurance that there will be adequate senior representation.
Ms Carter: I see no reason why there would not be under this.
Mrs Smith: Okay. Sometimes there is a difference between what is written and what will become practice.
The Chair: On behalf of the committee, Mrs Smith and Ms Hurlbut, I would like to thank you for taking the time out of your busy schedules to give your presentation this morning.
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FAMILY SERVICES CENTRE OF SAULT STE MARIE AND DISTRICT
The Chair: I would call forward the people from the Family Services Centre of Sault Ste Marie and District. Good morning. Could you please identify yourself for the record and then proceed.
Ms Tasz: My name is Mary Tasz and I am an adult protective service worker with the Family Services Centre of Sault Ste Marie and District. There are currently three of us working out of our office.
The adult protective service worker is a transfer payment service, and I am sure most of you know that. I think adult protective service workers have been pretty vocal in the past two years in trying to get our message across to the Advocacy Commission. Our program began in 1974 after a study commissioned by the government determined that individuals returning to the community required supports to live independently. The family services centre in our area has sponsored the adult protective service worker program since 1978. I have been with the program since 1983. With deinstitutionalization, advocacy has become an integral part of this position.
I have been sitting here listening to the people speak all morning. Most of the clients we work with have no family that we can rely on -- we wish we could, but we cannot -- in helping to make the decisions, so I guess we are coming across from a different perspective. I am usually the person who helps the clients make the decisions.
On behalf of the APSW program, we are pleased that the Advocacy Act may finally come into being. The family services centre has actively been involved with previous studies, ie, You've Got a Friend and the Fram report. We think both have helped lead to this act.
Some of the provisions in the act we think are positive, including advocates' access to records, their clients and facilities. We feel that will provide for better service and care for our clients. This bill presents a community development approach in the provision of advocacy services and it promotes self-advocacy. As adult protective service workers, we believe that is very important. It is a culturally sensitive bill, one which will aid individuals to achieve their independence.
Consumer control of the Advocacy Commission is positive. This agency supports an open-ended definition of who will require advocacy services, thereby preventing agencies or services from misleading people. It will be possible for vulnerable people to have an independent advocate with the power to investigate possible abuse. This agency also supports a model that ensures independence of advocates from specialized service-providing agencies or ministries.
We do have some comments and suggestions. The Adult Protective Services Association has submitted a brief, and some of our thoughts may be along the same lines as theirs.
Subsection 5(2), a housekeeping item maybe. The board may number from seven to 13. We think the upper limit is more viable if we want provincial representation. With seven people you are not going to get the provincial representation.
The Advocacy Act is selective in utilizing the existing advocacy system. We see that the psychiatric patient advocate program is moving over and that the APSW program is not moving over at this time. It is suggested that this program remain with the Ministry of Community and Social Services. This is the same ministry that provides and funds many services which the adult protective service worker has to access on behalf of his or her clients.
I would like to give you some examples of the conflict. Recently, the family services centre took a stand not to show client files to MCSS until we had consent from our clients. This disagreement lasted for approximately four months before it was resolved. Since this program is 100% funded by MCSS, the ministry had the option of withholding the budget for 1991-92 until this agency complied.
Family services took this stand only after consultation with our clients, the president of People First, the Advocacy Resource Centre for the Handicapped, child and family services advocacy and the Ontario Association for Community Living. The general consensus was that by showing client files we were breaching clients' trust, and that there must be better ways to complete a financial audit of our program. In fact, one client told me that if I were to show their files, I should not have the job I have because it was their personal life that I was showing.
These difficulties with advocating also occur in the residential and vocational programs. It is difficult to advocate within a system that has the same sponsorship for service providers and the adult protective service workers, especially when the adult protective service workers are working with clients to meet their needs. This places us in a position of advocating against the same system that provides the funding.
The program supervisor of the district office with the Ministry of Community and Social Services is often the same program supervisor for the specialized service agencies we are attempting to secure services from. Often we have to advocate against these same service providers.
In Sault Ste Marie and district, rationalization of services for the developmentally handicapped is authored by MCSS, and this became an issue. Our agency publicly took a position that the APSW program should not be included because of the potential for conflict of interest. Immediately following a public forum on this topic, ministry staff suggested to this agency that we should review our contract and other ministry-funded programs within this agency. This type of intimidation would certainly stifle true advocacy in most agencies.
We believe that resource coordination and case management, especially in rural areas, is a primary step to identifying advocacy issues, and that the two cannot necessarily be separated. Having stated that, a colleague called from Manitoulin Island in the last week and her comment was; "Don't forget to say this, because I work with the native population, and if they don't trust me and if I don't do some case management, I can't advocate on their behalf."
However, we also recognize that there will be times when the two must be separated. We see that the Advocacy Act would be a resource to this program when advocating for some individual and systemic issues, but at the same time they will complement each other. This could be seen as a bonus, because some individuals are concerned that advocates will not be taking a case management function. Because of this blatant conflict of interest, the family services centre recommends that the Advocacy Act include provisions to have the APSW program transferred intact to the Ministry of Citizenship.
The proposed bill has no provision allowing for emergency entry to facilities. I heard people arguing the other side of that this morning. As it stands, if an advocate is refused entry into a facility, a search warrant must be obtained. There should be a section dealing with emergency entry. The family services centre takes this a step further and recommends that access to clients within these facilities be available as required.
This bill does not explain fully under which circumstances non-instructed advocacy becomes necessary. It is important for advocates who locate individuals who are unable to express their wishes to be able to take whatever action is necessary on the client's behalf to restore some degree of safety, security and wellbeing. We also recognize that there are needs for checks so this is not abused by the advocate.
The definition of a "vulnerable person" in section 2 fails to protect the most vulnerable people in Ontario. It excludes those who are unable to express their wishes.
The act does not provide for a minimum number of regional offices. This should be included as part of the act. Northern communities have little faith in commissions that make decisions from Toronto. Regional offices are important for advocates to work out of, but also in order for the community to be aware of their presence.
This act empowers clients and their advocates. It does not require the government to respond, however, to concerns raised on a client's behalf. We would like to recommend a provision within the act which ensures that the government's response to concerns raised by advocates within the commission occurs within a specific period of time.
The act ensures that vulnerable adults have the same rights as other adults. Within the community, this act makes no specific mention that advocates will take action to protect their clients from abuse and neglect, and this needs to be stated. However, having stated this, often community resources are sadly lacking for developmentally handicapped adults who have been abused. We must be careful that upon investigation the individual will be removed to a safe place, or we may be setting that individual up for increased abuse and neglect upon the advocate's departure.
The commission does not have a provision made for appropriate evaluation of community-based advocacy efforts. Advocacy services must be accountable. Therefore, a system needs to be in place prior to implementation of the advocacy program to allow a commission to suggest that funding be withdrawn from an agency, group or organization providing advocacy services if standards are not maintained -- accountability.
The family services centre has some concerns in a situation where a vulnerable person indicates that he or she does not want the advocate to stay. Subsection 21(3) places an obligation upon the advocate to leave. Many of the developmentally handicapped clients and physically disabled clients we work with will make a request such as this, if they are told to by someone else. Many of our clients have learned to do what they are told and not to even question, even if they do not agree. Questioning sometimes leads to worse consequences, especially if you are in a wheelchair and somebody has to provide the services to you. We are setting that person up. It is family services centre's recommendation that the Advocacy Commission look into this for an amicable solution to this concern.
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Clauses 24(3)(a) and (b) should be deleted. Clients have every right to know what is or is not in their file.
I would like to speak to Bill 108, the Substitute Decisions Act, and Bill 109, the Consent to Treatment Act. Before any of these acts can occur, it is important that Bill 74 be in place and tested to determine if there will be a need for guardianship legislation.
The proposed office of the public guardian and trustee needs to have services in place to fulfil the mandate of Bills 108 and 109. As it stands now, we have yet to meet a public trustee worker, although there is a person responsible for at least 15 clients we service in a local nursing home. As workers in this field, we are still not certain of their role and how they interface with the client.
The new office will need to have significant representation for all groups, and must be more service-oriented and accessible across the province. North Bay is closer to Toronto than it is to Sault Ste Marie, but the homes for special care worker works out of North Bay. The public trustee office has no presence at all in our community. When a client dies, they have to die between 9 and 5 because that is when the public trustee's office closes. There is no worker available after that. I bury that person; the public trustee's office does not. And you had better hope that they die from a Monday to a Friday, because we do not have a presence in our community.
In Bill 108, in speaking to accessibility to the court system, the proposed substitute decision-making legislation depends heavily upon the court system to ensure that an individual's right to appeal is protected. Efforts need to be made so that a person deemed incapable is guaranteed access to an advocate within 24 hours, and this access should not be limited.
This agency does have concerns about Bills 108 and 109. We recognize an improvement over the current laws governing mental incapacity issues. The concern lies with the impact, or the potential impact, of this legislation on vulnerable persons' personal rights regarding unnecessary intervention and access to support. It is important whenever possible that vulnerable people be able to maintain their decision-making power.
The family services centre is committed to prevention and advocacy. We applaud the act in terms of providing advocacy for the elderly, physically disabled, developmentally handicapped, and head-injured and brain-damaged individuals. As adult protective service workers, we find that many unserved clients, especially the physically disabled, elderly and head-injured, would benefit from a program such as the APSW program. The Advocacy Act takes it one step further away from conflict of interest of funders and provides legislative authority so that advocates can do their job.
Often in the course of our job, we find that other special needs groups require many of the same services that we provide for the developmentally handicapped. Regardless of whatever disability a person may have, a vulnerable individual does require an advocate. It is important for the Advocacy Commission to ensure that this program be independent. It should be within a free-standing organization because its role is advocacy. Otherwise it could lead to a conflict of interest, something that adult protective service workers experience on a day-to-day basis, being funded by the same ministry we have to ask services from.
We would like to reiterate that this act is a positive step in advocating for the rights of vulnerable adults. The APSW program would complement this act by being transferred intact from the Ministry of Community and Social Services to the Ministry of Citizenship.
Mr Curling: Thank you for coming in and making this presentation. As I was reading your presentation, some things come to mind: the proper definition of "vulnerable person," what that is. It seems to me that you are not quite sure how the legislation defined for you what is a vulnerable person and when did they become vulnerable, because people are sometimes vulnerable continuously, and for some, certain hours or certain conditions make them vulnerable. Do you think that this legislation helped you to understand more who is vulnerable and when they are vulnerable?
Ms Tasz: I think my client should help me to understand who is vulnerable and when they are vulnerable. The legislation has defined it a bit better.
Mr Curling: I see. On page 7 you say, "Subsection 21(3) places an obligation upon the advocate to leave." I understand you are saying here that if that the vulnerable person, so defined, would have an advocate, he could say, "I don't need that advocate any more." Am I understanding you to say that the law should specify very much so that advocates should have a right to stay?
Ms Tasz: I am saying that in some cases we have clients who are told to say certain things by other people and one of those things may be, in a crisis situation, that they do not need an advocate. Maybe they have been sexually abused in that home and that person is telling them that they do not need to see the advocate and they do not want to see the advocate, yet they do. But because they are told to say that, they will say that. I am saying we need to be aware that those types of things happen, especially with the developmentally handicapped, who have learned over the years to do what they are told to do.
Mr Curling: You are saying whether vulnerable people want an advocate or not, they would have an advocate.
Ms Tasz: No. I am saying there has to be a system in place to ensure that an advocate is available to that person, and if it is questionable as to whether or not they need an advocate, there has to be some system in place. I am not sure what that system will be. I have worked in this position for nine years and I have had clients tell me that they did not want to see me, or have not told me what has happened, yet at a later time they will tell me, and I know that something is going on.
Mr Curling: It is a change of position.
Ms Tasz: They are afraid, so because they are afraid, they will not say something.
Mr Curling: I am glad you mentioned the fact that there are advocates around today. Yesterday some of the members here felt there were no advocates paid by government. There are many advocates paid by the government and millions of dollars being spread out.
Mr J. Wilson: A witness made that point, not a member.
Mr Curling: Yes, a witness made the point. Actually, some members confirmed the fact. I wanted to restate that there are many advocates around today paid by the government to do the job.
Ms Tasz: Although MCSS would say that adult protective service workers are case managers.
Mr Curling: The last question I have: Do you see that this advocate law helps the family, enhances the family, or do you see it somehow put a sort of a mistrust on the family system to say that your family may not be the best people to look after you, but an advocate?
Ms Tasz: I think the family has to be the primary person to take care, if they want to take that on. What I am finding with my client group is that the parents have wanted to take responsibility for their children, but as the parents are aging, the brothers and sisters do not necessarily want to take on that responsibility.
Mr J. Wilson: Thank you for your presentation. You began quite correctly, I think, by discussing conflicts of interest that are perceived or real in the system now. You also began your brief by being very supportive of the Advocacy Commission and the fact that the majority of its members will be made up of vulnerable people.
In this legislation, as I see it, the government is taking two important steps that are unprecedented in the province. It is setting up an arm's-length commission which in itself, under law, will be biased and partisan. Then it is saying, in the powers of that commission and in fact in its mandate, that it is to help effect change at the political level.
You have discussed conflicts of interest between protective service workers, for instance, and the same funding agency. Do you not see a conflict of interest here in terms of its being funded by the government but we are going to have people who are there to effect political change, and indeed to help vulnerable people set up organizations which I assume will also advocate for change?
Ms Tasz: I think we would like to see it as a free-standing agency without government controls. However, when you look at a ministry that might be funding the program, the Ministry of Citizenship is the ministry we would support, because it is not providing the services to clients that we would have to access, so we believe there would be more support.
Mr J. Wilson: The question has been raised -- I do not know whether you would agree or disagree; I suspect you might disagree -- that members of the Advocacy Commission, because of potential conflict at the political level, should not be allowed to participate in political parties or political campaigns, and that this should be part of this legislation. For the first time in the history of the province we are setting up an arm's-length body that has a bias, not necessarily political, but has a bias in terms of service groups, that has in law a mandate to effect political change, to bring about political solutions. I cannot think of a more direct conflict of interest ever stated in a piece of legislation.
Ms Tasz: I would like to see the program piloted -- this is a personal stand -- and tested in a few areas, and then come back and really look at it.
Mr J. Wilson: That is an interesting suggestion, because that has been brought to us too, that perhaps we should be doing a pilot project, not across the board, to see what happens. In fact, some of the larger hospital organizations would, I think, support that.
Mr Morrow: I want to thank you for taking the time out to appear before us today. I just have one really brief question so I can clarify something for myself. Do all APSWs play the same role across the province?
Ms Tasz: No.
Mr Morrow: That is a quick answer.
Mr Malkowski: Just two brief questions. First of all, do you agree that we do need the Advocacy Act in place, even though, for example, you do some advocacy as an APSW? My second question is simply what proportion or percentage or your work is case management versus actual advocacy work?
Ms Tasz: Yes. I would like to see this Advocacy Act in place. The percentage of my job, I am not sure. I really could not give you an answer, maybe 50-50.
The Chair: I apologize for the background interference here. It made it a little difficult hearing your presentation, but on behalf of the committee, Ms Tasz, I would like to thank you for taking the time out and coming such a long distance to give your presentation.
This committee stands recessed until 1:30 this afternoon.
THE COMMITTEE RECESSED AT 1203.
AFTERNOON SITTING
The committee resumed at 1341.
FEDERATION OF ONTARIO FACILITY LIAISON GROUPS
The Chair: I call forward our first presenters, from the Federation of Ontario Facility Liaison Groups. Good afternoon. Would you please identify yourselves for the record and then proceed.
Mrs Paproski: I am Margaret Paproski, president of the Federation of Ontario Facility Liaison Groups. Janet Allingham is our secretary and also president of Huronia Helpers. Peter Delsnyder is our treasurer and vice-president of our Oxford regional centre.
In leading off, I have submitted a brief which I will speak to. It is long and there is some extraneous material, background material I thought would be of interest to members when they come to the recommendations.
In general, the federation is very pleased that the government has entered upon this initiative to provide advocacy, guardianship and support to vulnerable people. We will be speaking specifically to Bill 74, the proposed Advocacy Act; Bill 108, the Substitute Consent Act, and just in reference to the amendment to the Developmental Services Act, Bill 110.
We represent some of the most vulnerable people in this province; that is, adults who have a lifelong condition of mental retardation and who, because of the severity of their disabilities and the lack of community services, live in institutions.
None of us here has a legal background, so we are, as I assume many of the MPPs are, looking at a very difficult and complex area. We just want to present our concerns and some of our perspectives as to how the legislation might be improved to reflect our concerns.
One of the dilemmas we feel we face in these pieces of proposed legislation is the lack of recognition they appear to give to families and long-standing friends of people who are incapable of giving consent or providing direction. All the pieces of legislation to which I refer have clauses relating to the vulnerable person giving consent or being able to direct. Our people function at a much lower level than that and, although they may be able to indicate what they are pleased and happy with, they may not understand the long-term implications of certain decisions. That is one of the most important pieces we see lacking: These people seem to be omitted from the proposed legislation. It is my understanding that at one time there had been a clause relating to the advocate taking advice or consulting with significant others -- that is, family or long-standing relationships of these people -- and somewhere along the line that has been disposed of. We suggest that it should be reincluded.
Many of the people we represent do not easily develop trusting relationships. They can and have developed defensive and coping mechanisms which can be very difficult to break through to reach them and to understand what they are trying to convey. Therefore, to have an advocacy system which enables an advocate to see them on a very infrequent basis is not necessarily going to have a positive influence or effect on their lives. They will perceive these people as strangers, possibly as not looking after their best interests, and, in the case of some of the people I know, will withdraw from having anything to do with them because they are frightened of strange and new situations and people. Therefore, we are a bit afraid that for these particular people the Advocacy Act will provide a cloak of legitimacy for a bureaucratic system to impose maybe a political will on the type of services and supports they should be receiving.
It is interesting that one of the criteria for admission to an institution is the issuance of a certificate of incompetence, usually by the admitting physician. Although the children living in institutions suffer the permanent condition of severe to profound intellectual impairment, it is interesting that once they reach the age of majority they are deemed competent unless declared incompetent by a court action. Second, in the proposed legislation there is a clause which states that after discharge from an institution, after a period of three months they will again be deemed competent. It sort of boggles our minds.
As a parent who has undergone having had a child who entered the facility at the age of 12, when I had very supportive staff and could look at my daughter's records and consult with them in relation to her medical care, her developmental care, etc, when she reached the age of majority it was such a shock, it was if an iron curtain had come down. She had become an adult who was deemed competent. I had no access to her records. I could get verbal information but I could not delve any deeper.
As a result, we applied for committeeship and went through the court procedure of having her declared incompetent and my husband and I committees. That is insufficient legislation in that it only sets out guidelines in handling her estate; she has no estate. Then it simply says "committee of the person not defined." I welcome the guardianship legislation in that it does set out certain guidelines for guardians to follow in submitting an annual report. These are the things for which you are responsible. I think that is good and I welcome that.
The other thing I think would be an improvement, if we could apply for guardianship, is the access of information. Currently, having committeeship, I still have to apply under the Freedom of Information and Protection of Privacy Act to receive information. I only have to do that once, as long as I sign the right check box that says I want ongoing information. These guidelines for guardians should be more readily set out.
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We have some problems with it in that all the people living in institutions for the developmentally handicapped have been deemed incompetent. I may be misreading the proposed legislation, bit it appears that, because they are incompetent, they will automatically have an advocate assigned to them. If I have statutory guardianship, which I assume committeeship is, an advocate must visit every person in a facility to explain their rights to them and ask, "Are you happy with the representation you have by your guardian?" If that does not happen within that two-year period, then the public guardian becomes the guardian. The other thing is that, as I mentioned before, if the person is discharged from the facility, three months later statutory guardianship ceases. There is a void of how we are best going to protect the interests of people who are incompetent, who cannot give consent, who cannot give direction.
I am not saying for one minute that all families, all members, all parents are the best people to represent some of these people. Certainly there are instances where they are not, but there are also long-standing friends who may know the person very well and may have a substantial role in advocating for him and trying to provide him with the best quality of life.
We recognize the need for advocacy; we think it is a good role that should be played, but how effective this is going to be in a bureaucratic system I do not know. We have all had experiences with the public trustee. Certainly at the Rideau Regional Centre it took over a year for the public trustee to determine who was alive, who was dead and who was still residing in the facility before he got the personal needs allowances cheques sent out to the appropriate people. That is a long time in a person's life.
I do not want to take too long making the presentation, because I want you to have an opportunity to ask questions, so I think I will go through the highlights of the brief I have presented to you.
Again, Bill 74, it appears to us, is directed towards those who have difficulty in expressing themselves but who can give consent. It does not take into consideration the lifelong condition of profound and severe mental retardation. We recommend that this bill address ways in which people who are incompetent and who will always be so also be protected and served in a non-adversarial way.
We have a little problem with the term "advocacy" in that there are legal connotations which reflect confrontation. Some families are feeling threatened by this. If an advocate comes, is this somebody who is on the other side of a stream who is going to tell us that we are doing things wrong and has legal status which we as parents do not have? This is a little threatening, to the point that some parents are already applying for committeeship in anticipation of the passage of these bills.
Bill 108 appears to be directed towards those who are currently competent and to psychiatric patients who may have periods of competency. Again, it is the same basic issue.
Finally, Bill 110, which will be making amendments to the Developmental Services Act, does not take into recognition the lifelong condition of severe to profound mental retardation.
Mr J. Wilson: Thank you very much for your presentation. You did mention in your oral presentation towards the beginning, and I guess at the end, that you are worried that we might be setting up a somewhat adversarial system. Have you had experience at all with advocates, to this point in your life, in your relationship with your association and your own family?
Mrs Paproski: Yes, I have, as a matter of fact. I can give you two examples. One was when we applied for committeeship and informed the institution we were doing so and why we were doing so. I wanted access to my daughter's records and to be more informed as to her condition and needs.
When we made the application, a request went to an adult protection services worker to go in to see my daughter, to inform her of her rights and to hire a lawyer on her behalf. Then eventually it got down to the public trustee, who put pressure on our application to change it to read that in the case of a disagreement with placement we would refer the matters to the court. The unfortunate advocacy role that was played there was that none of those people identified themselves to me, my husband or our lawyer. We were simply informed by the public trustee that there was a public interest group which was advocating for our daughter. I learned after I got the records there was an APS worker in Lanark.
The second example is a mother, who is a widow, who has a 26-year-old son living in the community who has been in group homes, in a family home program, in semi-independent living and then back into a group home. The latest question she was asked by the worker in the home was what her legal status was in relation to her son. I believe her son is 26. She feels this is coming maybe from the questions arising out of this proposed legislation.
Mr Winninger: I agree with much of what you have said, but there are a couple of points I would like to go over with you just so I am clear on them. The first one concerns the profoundly disabled. Are there not possibilities that profoundly disabled individuals might be able to indicate who they would like to be a decision-maker for them? Obviously they lack capacity, and a substitute decision-maker may have to appointed. In that case, would not some of your clients be able to indicate a preference for one person or another?
Mrs Paproski: They may, but whether they would be choosing wisely might be a question. It may be the person who takes them out for ice cream cones; it may not be the person who supervises their diet. If one is looking at the long-term results of that decision, I would question whether it is really in their best interest and whether they have the competency to understand how it is going to affect them in the long term.
Mr Winninger: I suppose that is also a matter for the judge hearing the application for guardianship to decide whether this person's choice is an appropriate one or not.
Ms Allingham: Many times we find that our people give the answer they expect the person asking the question wants to hear. They have learned it as a defence mechanism, and we are concerned about this.
Mr Winninger: I see. I just wanted you to know that no one is ruling out a wish of a profoundly disabled individual to indicate a preference, subject to the kinds of safeguards that come into play, when a court has to determine guardianship. I also wanted to find out if you were aware of some of the transitional provisions in Bill 110. You asked, if you are appointed a committee under the Mental Incompetency Act, whether this would trigger an advocate with the implementation of our new legislation. If you are a private committee and you have been judicially appointed and you file that committeeship within two years of the act coming into force, then you become that person's substitute decision-maker or that person's guardian under the new legislation. There is no requirement for advocacy in that situation under the legislation.
Mrs Paproski: But you have to refile within two years. Is that the situation? So even though I have committeeship, I would have to refile?
Mr Winninger: Just to become official under the new legislation as a substitute decision-maker guardian. But if, for example, there is no private committee and the public trustee was the committee for that individual under the existing legislation, then if the new public guardian and trustee is to continue in that role and the person objects, a guardian may be called. That is in regard to the public trustee's role and not in regard to your own role as a private, judicially appointed committee.
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Mrs Paproski: You see, the majority of the people in institutions come under the public trustee. There are very few people who have committeeship, primarily because there has been a policy to involve families and to discuss things with families. People have not wanted to go through the court process. It can be lengthy, it can be expensive, it can be beyond some people's means. If this goes through, then the majority of people will come under the responsibility of the public trustee and the public guardian, which begs the question what parents and families should do, because they are not accorded any direction in this proposed legislation.
Mr Winninger: Legislative counsel can always correct me if I am wrong, but in this particular situation there is no dramatic change from the existing regime in the proposed regime, only in so far as before the new public guardian and trustee takes over existing files there is an opportunity for the vulnerable adult, if you will, to object and have an advocate called. Mr Fram may be able to amplify on this.
Mrs Paproski: What if they cannot object? I am looking at people who function at a two- and three-year-old level, who are non-verbal and cannot object. They have no idea what you are talking about.
Mr Fram: The first thing you raised was the problem you now face under existing law when your child becomes 18 years old or there is a discharge from an institution and the public trustee no longer manages the flow of funds. Under this legislation there would not be a problem because unless the person objects to the continued management when an advocate comes out, the public trustee would continue to manage the property to whatever age. If the family members wanted to take over the management from the public trustee, all they would have to do is apply and then they could take over the management.
Many of the kinds of situations that call for decision-making would be physical care decisions. Under existing law if a person is getting medical care in a facility, the family has no right to consent to or refuse treatment in those situations. Under the Consent to Treatment Act the family would have the right to make those decisions that the person is not capable of making. I think that basically covers most of the concerns.
Going further, under existing law if the family wants to gain committeeship of the person without guidance, there is necessarily a hearing before a judge. Under the provisions for guardianship, where the person who is going to have a guardian does not object, there is no requirement for a hearing. The documents addressing incapacity are filed along with the plan of where the person is going to stay and what kind of care he or she is going to get. It is called a guardianship plan, and if there is no objection by anyone, then the parent, brother, sister or other friend or family member can get guardianship.
Mrs Paproski: They can apply? This is what I found not very clear in reading the proposed legislation, especially if it was somebody residing in an institution. The onus is on the family member or the long-standing relationship to make application?
Mr Fram: Right.
Mrs Paproski: To whom do they make application?
Mr Fram: They would apply to the court, but through the public guardian and trustee's office. The requirement should be simple enough that it could be done by people by themselves, unless there is someone who objects to it. At the point at which there is an objection, a struggle, like the Justin Clark case, then you are into the usual kind of court procedures, but otherwise it should be a fairly straightforward procedure.
Mr Delsnyder: That is the current legislation as well, is it not? The procedure is to go through the public trustee?
Mr Fram: It does go for review now to the public trustee.
Ms Carter: I am a little concerned about your view of the advocate. It does not quite correspond to my own impression of what the advocate would be and do. First, this is somebody who is going to find out the opinions of somebody who by definition is isolated, does not have family or friends looking after him in an adequate way; otherwise the question would never arise. They are not going to intrude into a family situation unless there is good reason, and sometimes there might be good reason.
In the case of people who are profoundly disabled, as are the ones you deal with, I cannot see in what circumstances they would have an ongoing relationship with an advocate if by definition they cannot really express any wishes of their own. I see an advocate as somebody who would only be called in if there was some reason to think there were problems. Then their response would be to follow up some of the other possibilities that we have been looking at, such as guardianship, if that was seen as necessary.
As an example, if you have a relative who is in care in an institution maybe some distance from where you live and you cannot supervise how they are being cared for, the advocates who already exist in psychiatric hospitals, for example, have sometimes been able to alert families to problems they would otherwise have been unaware of. Then the families have been able to act on the basis of that information and have in fact been very grateful for it.
Mrs Paproski: Now we are talking about different types of advocates, because there are obviously advocates who exist and advocate on behalf of people. But this Advocacy Act is setting up a more formalized process of advocacy. It was my understanding in reading the proposal that the officially appointed advocate is going to have to review all those in institutions to see if they are happy with the advocate they have. They have a two-year process in which to do this. I am just wondering how cumbersome or expensive this may be and whether it is possible.
Ms Carter: I do not recollect anything of that kind in the act, actually. If you could point that out to me I would be interested.
Mrs Paproski: I have the quote here someplace.
Ms Carter: I do not think there is a provision of that nature.
Mrs Paproski: You have clarified a number of points that we certainly have had concern about. As I say, basically the whole thing seems to be so geared to people being able to give consent that this very small population, but most vulnerable population, did not seem to have their issues addressed as to how they were going to be protected.
The Chair: I think Ms Spinks has some clarification here.
Ms Carter: Would counsel like to comment briefly?
Ms Spinks: Yes, I just wanted to clarify that there is no provision in the Advocacy Act of the type you describe which would suggest that an advocate would take it upon himself or herself just to continually review the actions, for example, of a guardian or in an institution. There is a role for advocates in terms of assessing the types of policies and practices of institutions, but they would not be intervening in individual cases unless there was a specific request by the individual or a referral by a third party, which would be followed up with the individual. In your case, if there is an inability there to give any meaningful direction to the advocate there would be no involvement.
The Chair: Ms Allingham, Mrs Paproski and Mr Delsnyder, I would like to thank you on behalf of the committee for taking time out and giving your presentation.
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JOHN PROPPER
The Chair: I would like to call forward our next presenter, John Propper. Would you please introduce yourself for the record and then proceed?
Mr Propper: My name is John Propper. Thank you very much for the opportunity. My sister, whom I shall call Anne, a fictitious name, is now in her late 40s and has been schizophrenic for over 20 years. I would like to put on record that if Anne were to find out that I was in fact making this presentation she would be very upset. I ask members of the press who are hearing this or reading about this to not report on it.
Let me say a few things about the effect of Anne's illness on her life and on those around her. I will start by describing what Anne is like when she is not under medication, and she is not under medication now.
The first time Anne was involuntarily committed, over 20 years ago, we had a psychiatrist visit at the house. He was sitting in the living room when Anne walked in. All she did was walk in and walk out again. I do not even think she said a word. The doctor turned to me and said, "How long has she been like that?" It was that obvious that Anne needed help. Of course, the doctor did talk to her at length before he authorized the involuntary commitment, and another doctor was involved as well, so it was a very rigorous procedure that was followed.
Since then, Anne has been found, variously, curled someplace in the foetal position, incontinent, actually unable to walk and who knows what else over the last 20-odd years. I have personally arranged two involuntary commitments, and I know of at least one other. These events, as you know, include the use of force, police, ambulance attendants, distraught family members, neighbours and friends who happen to be around -- all in all, a pretty traumatic experience for everybody involved and mostly so for the person being committed.
What is Anne like when she is well?
Prior to her illness, Anne was an honours student at the University of Toronto, an English major. A byproduct of her illness was interrupted studies -- she still has not graduated. During the past 20 years, Anne has had normal relations with family and friends for only a very few years and only while on medication. Prior to the onset of schizophrenia, Anne was an honours student and academically gifted. During the few and short periods when her illness was controlled with medication, Anne functioned well. The family enjoyed her warm company, she was fully employed and started working towards her degree again. She met a man and got married. She was just like an ordinary person, and a far cry from the Anne I described without medication.
Anne's history, I am sure, is not unfamiliar to you: Schizophrenic, but responds well to medication; stops taking medication and becomes too ill to realize she needs treatment; a downward spiral ending with involuntary confinement, and then we start all over again.
As I mentioned, Anne has been involuntarily committed at least three times, and each time this unpleasant process was her only road back. After medication took effect, she was grateful to be back with family and society. Although I am sure she was not happy to have been involuntarily committed, I never felt her resentment of this. The important point is that no matter how unpleasant the process, after my sister had stabilized, she was grateful for what had been done for her. Being healthy was worth it.
Unfortunately, after some time Anne would typically become convinced that the medication was unnecessary, go off drugs and suffer a relapse.
As I mentioned, she met and married during 1983. Shortly afterwards, she stopped taking her medication. The inevitable happened. Anne became ill again, left her husband, disconnected from family and friends and quite literally just wandered around the streets, just like the people you see downtown or on TV. As with past relapses, she invariably lost all her possessions, job, money, clothes and so on.
The family desperately tracked her wanderings and tried to have her committed. We found that the laws had changed dramatically since we had last hospitalized her some time in the early 1980s. A police officer told me once that suicide attempts with slashed wrists were being discharged. His quote was, "Good luck on helping your sister."
The medical profession fears legal problems, probably for good reason. Anne, for example, is very clever and would be knowledgeable of the law. She would be explicitly threatening, I am sure, to doctors. The police, doctors and other well-meaning professionals seem to be helpless in the face of current laws.
At least once since 1983 Anne has been hospitalized. The family was notified in late 1987 that Anne had been admitted to North York General Hospital's psychiatric ward. She was found incontinent and unable to walk. That is all we know. She accepted visits from some of the family. Anne stayed in the hospital for about a month and then left. I urged the hospital to keep her until the medication took full effect. They said she had improved significantly since she had been admitted. Nevertheless, because of the law, the hospital could not guarantee that Anne would stay long enough for the medication to take hold. Obviously, Anne did not stay.
Since 1983, contact has been infrequently maintained through an old friend of the family. Anne would meet this woman now and then, and as long as the conversation did not drift to Anne's condition, this family friend was able to maintain pretty good relations. Except for emergencies, this was the family's only knowledge of Anne up to the last year or so. More recently, the family does have intermittent contact carefully arranged through this friend. Mine is limited to infrequent and incoherent, pretty much unreadable letters, and my mother's contact is infrequent and tense meetings downtown, typically. Anne is unemployed and living downtown in a rooming house someplace, presumably on welfare.
We have only very sketchy information about how Anne has lived since she went off medication in 1983. Although Anne is now obviously able to walk and is not incontinent, I am not satisfied that she is well. Clearly, she is not living her life to its potential. Clearly, neither Anne nor society's best interests are served by her twilight state.
I fail to see how Anne's freedom to not take the medication is to her or anyone's advantage. I fail to see how a law which allows someone to live half vegetated when effective remedies are available is in the interests of anyone. Are Anne's or society's interests really being served by existing and proposed laws?
If the issues are personal freedom and individual rights, then the questions should be, freedom from what? Rights to do what? Laws often restrict freedoms and limit rights. I have to wear my seat belt, a motorcycle helmet and not drive through red lights. Obviously I cannot do as I wish all the time. If these kinds of laws make sense, then so do laws that allow schizophrenics to lead normal lives.
One suggestion I have is to include, for example, a special provision in the laws to ease requirements for involuntary treatment if a person has a known history of mental illness and his history indicates that the person responds well to medication.
Another issue that needs somehow to be dealt with is the disincentive for doctors to decide objectively. If doctors believe that a person should be committed, they know they may wind up spending expensive time defending their actions. Far easier to not act at all. Somehow the system has to provide an incentive for fair judgement by professionals.
Mr Poirier: Any specific points in the bills that concern you pertaining to schizophrenics? What would you like to see removed or added or changed, specifically?
Mr Propper: I guess the last point. If the subject has a known history of mental illness and also has a history of responding well to medication, I think in those circumstances the requirements for involuntary commitment should be less strict than otherwise.
Mr Poirier: Who would decide that?
Mr Propper: I do not feel qualified to judge that. Obviously, doctors. I am not sure what I have to choose from.
Mr Poirier: How about the role of family in that?
Mr Propper: In deciding?
Mr Poirier: In deciding or in the entire issue, the whole issue of schizophrenics. How about family? What do you have to say about that?
Mr Propper: I would say that the family is an important part of it. The family knows the patient and presumably has an interest in the wellbeing of the patient, and I do believe the family should be involved in the decision. I cannot say I have really thought through what the mechanism by which that would occur would be, but it makes sense to me now that you raise it, yes. Am I answering your question?
Mr Poirier: Am I asking the question well maybe, which is something else. But your being the family of Anne, how does it fit in? Are you satisfied that what was brought forward is going to help you?
Mr Propper: I do not feel completely knowledgeable to comment in a lot of detail on the provisions of the new laws at all. I know that since 1984 nothing seems to have worked, no matter how bad the shape she was in. My understanding is that, yes, in a very general sense the new legislation is going to make it even more difficult to act, and it is on the basis of that knowledge that I am here today.
Mr Poirier: Okay. So you are afraid the new legislation is going to make it more difficult.
Mr Propper: True. That is my understanding.
Mr Sterling: You are about the third or fourth witness who has given testimony about a close family member. I think you would be interested in the exchange we had yesterday afternoon when another witness outlining the same problems with a close family member brought it to the attention of the committee.
Basically, it is my belief that while Bill 74 very much works against the good of schizophrenic patients, I think Bill 108 probably assists in terms of getting guardianship and utilizing the powers of guardianship in order to get treatment for a brother or sister, as in your case. So perhaps you could ask the clerk to forward a copy of the Hansard from yesterday in terms of exchanges which went on to clarify those sections of Bill 108 which can assist.
Mr Wessenger: I would just like to concur with Mr Sterling that I think Bill 108 could assist in this regard, because from the way you describe your sister, she would be a person who would not be able to appreciate the reasonably foreseeable consequences of a decision or a lack of decision. I think that would be fair to say.
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Mr Propper: And thereby could be involuntarily committed?
Mr Wessenger: No. You could be appointed as a partial guardian. One of the interesting things of Bill 108 is it allows for the appointment of a partial guardian, and it seems in many of these cases the appointment of a guardian with respect to the matter of treatment alone would be an appropriate remedy, leaving the person with his other legal rights.
But in the area of treatment, I certainly think it would really give a lot more resources to try to deal with the situation of the chronic severe-schizophrenic patient. We had a situation yesterday, I think, that would have fallen under the partial guardianship position. So I am just suggesting that it would be of some assistance to you, and I think perhaps it might be of assistance also if we asked for an explanation of what the situation is now under existing law with respect to this situation.
Ms Auksi: The situation you describe is very familiar, and over the years a lot of concern has been expressed that the committal laws address the situation where someone is dangerous to himself or others but really do not address the issue if someone is mentally incapable and maybe quite, say, psychotic or dysfunctional. There is not a means for such an individual to be hospitalized, for example, if that is the only way he can be treated.
What the combination of the Consent to Treatment Act, Bill 109, and the Substitute Decisions Act, Bill 108, would achieve that could assist in those situations such as this is that if someone is mentally incapable and requires treatment that can only be provided in a hospital setting, a substitute decision-maker could admit him if he is not objecting. If he is objecting, then it would be necessary to obtain a court order for guardianship, which could be as limited as just for the sake of that hospitalization, in which case it will be necessary to demonstrate that he is mentally incapable of making that treatment decision and that, in fact, it is necessary for the hospitalization to occur.
The issue, then, is the treatment and not the public safety issue. A lot of people misunderstand the committal laws as being somehow intended for treatment. As you probably know, if somebody is committed, there is still a separate issue of, does he consent to his own treatment? The purpose of the committal laws is different. Someone who is mentally competent can be committed; someone who is untreatable could be committed. The issue is the public safety issue of taking him out of harm's way, but on the treatment issue of someone who is mentally incapable to make his own treatment decisions, it is felt that it is better addressed through guardianship legislation which could provide the authority to hospitalize and treat if it is demonstrated that the person is mentally incapable of making his own decisions.
Mr Propper: So let me understand this. In brief, the new legislation would provide that it would be easier to involuntarily commit my sister or not?
Ms Auksi: You could characterize it as involuntary committal; it would amount to the same thing, in a way, because the person could, against his will, be hospitalized. In this case, the purpose would be explicitly for treatment and it would be on the basis of her mental incapacity. If you want to call it involuntary hospitalization, it is just that it has a history of meaning the other --
Mr Propper: What do we call it? What is the new phraseology, involuntary treatment or --
Ms Auksi: It would be admission to a hospital for treatment, and it could be for physical treatment as well, which of course is a big lack now. It could be for psychiatric treatment. The involuntary committal laws would still remain in the Mental Health Act for those public safety reasons. They are actually a separate issue from treatment, because treatment is a separate issue even when you get in hospital. These laws would deal with the issue of if you are incapable of making your own treatment decision, and if hospitalization is necessary for that treatment to happen, it can allow for that hospitalization to happen even if the person is objecting if he or she is shown to be incapable.
Mr Propper: And how easy is it for that to happen?
Ms Auksi: The provisions in the Substitute Decisions Act do allow for emergency guardianship orders, which can happen fairly quickly. For the ones who are not in that category, I would have to -- Steve is here; he might be able to give more detail on that. I would not foresee these as being terribly difficult if it is fairly evident that the person is mentally incapable.
Mr Propper: Perhaps it would be easier, then, with the new legislation?
Ms Auksi: Absolutely. Certainly that was one of the intents. It was to address the issue of the person who is mentally incapable and may be very out of it, very dysfunctional, in serious difficulty, but may not actually happen to act out in a dangerous way.
The Chair: Mr Winninger.
Mr Winninger: I think the area I wanted to cover has been quite well dealt with. I would just say that I think this kind of legislation, a combination of Bills 108 and 109, can stop the revolving door syndrome you might have experienced, where your sister is involuntarily admitted to hospital, given treatment, then released ultimately and goes off her medication. This would enable some form of guardianship that can persist as long as the court feels it is necessary that the guardianship be in place to ensure the treatment of your sister and to ensure it is not interrupted. I think quite a compelling case could be made on the basis of this legislation.
Mr Propper: And is the process of gaining guardianship lengthy, difficult or --
Mr Winninger: As has already been stated, it requires notice and it would require the intervention of an advocate to advise your sister of her rights, but I doubt that it would take any longer, and I would submit probably a shorter time than is the present situation.
Mr Sterling: Could I just ask a question, interjecting and asking counsel?
The Chair: Yes, Mr Sterling.
Mr Sterling: You indicated that the provisions of the Mental Health Act remain there but the issue is different. If a person goes and obtains a guardianship order which includes the right to treatment and the right to forcibly take the patient to the facility -- whatever power is needed in the order in order to do that -- can the patient then somehow kick in the Mental Health Act after that, once the order has been made?
Mr Fram: Once the order has been made, it is not a mental health issue. It is a treatment issue dealt with under the guardianship board.
Mr Sterling: And the control over the guardian would be specified in the order?
Mr Fram: That would be specified in the order, plus there is the right to apply to end the guardianship or, where a problem with the order exists, to tell the public guardian and trustee to look in on the matter. But that is totally disconnected with the involuntary committal criteria under the Mental Health Act.
Mr Sterling: In terms of the exchange we had with this witness and the witness yesterday when we got into this specific issue, I do not know how Hansard is working on these committees, but sometimes they come quite a bit later. If we could get the Hansard from both of those, it might be helpful when other witnesses like this gentleman come before us so we could give them the benefit of the exchanges which have been undertaken in this committee.
The Chair: I understand Hansard is coming out fairly quickly now.
Mr Sterling: Oh, good.
The Chair: If Mr Propper so desires, I will make sure that the clerk does send him a copy of what happened yesterday, being as we did have a fairly lengthy discussion. Through our last presenter, we have spent almost an hour on this issue, so if you would like, I could instruct the clerk to send that to you.
Mr Propper: Thank you.
The Chair: On behalf of the committee I would like to thank you for taking the time out this afternoon and coming and giving us your presentation.
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CANADIAN DIABETES ASSOCIATION, ONTARIO DIVISION
The Chair: I would like to call forward our next presenter from the Canadian Diabetes Association, Ontario division. Good afternoon. Could you please identify yourself for the record and then proceed.
Mr Harvey: Yes, my name is Peter Harvey. I am the chairperson of the social issues committee of the Canadian Diabetes Association, Ontario division. I am also a member of the national advocacy council for the Canadian Diabetes Association. We have prepared a small brief, and this brief is conditioned more or less on the fact that section 2 of the Advocacy Act is going to include people with diabetes, and that is predicated somewhat upon the phrasing of subsection 15(2), which refers directly to people with diabetes.
Because of the nature of the disease, which is set out in our brief, we do not necessarily see ourselves -- I am myself speaking as a person with diabetes -- covered within this act or the purview of the act from the point of view of the more contentious issues of having the requirement or need of an advocate in a situation where somebody is required to speak out for us. What we see within the act, which we like and support very much, are the broader concepts of education, the promotion of dignity, respect and so on for people who are disadvantaged, and it is to these issues that I wish to address my comments.
First of all, the Canadian Diabetes Association, Ontario division, is probably the pre-eminent organization speaking for the people with diabetes in this province. The aspect of this disease that is most distressing is the fact that in the next 10 years we are going to see the number of people with diabetes more than double. The statistics which are being reported by the Ministry of Health suggest that it is going to go from 5% or 6% of our population to well over 11%. Accordingly, it is going to be a very large body of people out there who are going to have to have perhaps access to some of the services which are indicated in the Advocacy Act, or the potential for those services.
The bottom line we see is really that education of the public is going to be a requirement if we are going to disabuse the public of the perception that people with diabetes are people with a disability -- and it is a perception, because in all walks of life, people with diabetes now participate and carry on normal lives.
The advocacy part of the Canadian Diabetes Association has been instrumental in changing government policy with respect to licensing drivers. It has been instrumental in changing some of the attitudes. There are proceedings which have gone ahead and challenged the concepts of disability in the workplace and so on.
The proposed Advocacy Act has six stated purposes. Three seem to get lost in the expressed concern over the right to treatment, right to refuse treatment and so on, and these are the requirement that the Advocacy Act be looked at:
"(a) to contribute to the empowerment of vulnerable persons and to promote respect for their rights, freedoms, autonomy and dignity; (b) to provide advocacy services to help vulnerable persons, (i) make their own decisions, exercise their rights, speak on their own behalf, engage in mutual aid and form organizations to advance their interests, and" -- more important -- "(ii) bring about structural changes at the political, legal, social, economic and institutional levels...(f) to acknowledge, encourage and enhance individual, family and community support for the security and wellbeing of vulnerable persons."
We look at the question of "community support for the security and wellbeing" as being an all-encompassing form. It includes the right to share equally, I suppose, in our dollars for health care and so on and to ensure that people are receiving proper and adequate treatment.
In so far as the act itself is concerned, we have few complaints with it; we are very much in favour of it.
One of the problems we do see, though, is that the act is limited in so far as the application of advocacy services to people under 16 is concerned. If that means that we cannot go out and speak and create programs for the education of the public with respect to people under 16, then there is a deficiency there.
The second thing is that the act is limited to community programs. We feel that if the larger aspirations of this act are to be adhered to or given voice to, then it should be on a provincial basis, not just a community basis. Cost-effectiveness of delivery of programs is something that should be considered, and if we are dealing with a community-by-community basis, then it is not going to be necessarily economically effective. The concept of "community" we feel should be enlarged to include the community of persons with the particular disability or the group of people who are vulnerable, not just within a geographic community.
As I say, the Canadian Diabetes Association does supports the creation of this act, it supports the roles which are being set out there and it sincerely hopes that it is going to be properly funded so that some of these educational programs on behalf of vulnerable persons can be launched.
The Chair: Thank you very much. Questions and comments?
Mr Sterling: What is it, section 15(2) of Bill 74? Is that the one?
Mr Harvey: Yes. Actually, it is paragraph 15(1)2.
Mr Sterling: Maybe you can help me out here, parliamentary assistant. Does that have to do with the groups that are to be considered to be on the commission or advisory board or --
Ms Spinks: The list of organizations refers to those that will participate in nominating people to the appointments advisory committee.
Mr Sterling: Did you want to be on that or not on that?
Mr Harvey: We would very dearly like to be on that committee as part of that proposal.
Mr Sterling: Sorry, it was just the clarification I needed. Thank you.
Ms Carter: I am very glad you like the act in general. We appreciate that endorsement.
I am interested in your recommendation 2 in respect to age. First of all, an advocate, by definition, is listening to the wishes of the person, and we have already had considerable discussion in this room as to what age a person is really capable of expressing his own best interests. I think that is a very difficult problem there, but it is my impression that the law, as it applies specifically to children, is actually stronger than the kinds of provisions we have here. For example, an advocate can request permission to enter premises, but if there is resistance, he or she has to retreat, as it were, and get a warrant. In any case, all they are going to do is to speak to the person and find out what his opinions are, and if the person does not want them there, then that is the end of it, whereas I believe the law as regards children is much stronger than that; they can actually be taken away from their parents and this kind of thing. I am just interested in what exactly you have in mind in this respect.
Mr Harvey: I guess, to comment on that, as I prefaced my remarks, the application of the individual advocacy role within this act is not seen as impacting a great deal on people with diabetes because of the nature of the disease. For most situations, unless there is another, secondary attribute there --
Ms Carter: Incompetent.
Mr Harvey: -- incompetent, yes; I guess that is the word. When we look at sort of the loftier ideals of this act -- to educate, to present community programs and so on -- if it is to be restricted because of that section so that you cannot present programs for education and so on as it relates to children or specifically children's programs, then it is an unnecessary restriction.
Ms Carter: I do not see advocates as people who present programs.
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Mr Harvey: That is the issue, I suppose, where the act talks about programs within the community for advocates for the educational aspect, the question of creating programs for the -- I go back to clause 13(1)(a) with respect to structural changes in the political, legal and economic spheres. Those are programs that seemingly are covered under this act and are being put aside with respect to the narrower issues. The CDA looks at it and says: "This act does allow a very broad advocacy role on behalf of all persons. If we are to develop community programs, then we can look perhaps to the commission for some funding for that."
Ms Carter: Yes, I understand that. But I wonder whether there might be other community provisions under which that would be provided. Counsel, do you have anything to say on that?
Ms Spinks: I cannot name them specifically but I think I should add that the age limit is really designed to refer to individual services, although I realize it does not expressly say that. I feel there is tremendous ancillary benefit through the public education role that the commission will provide to people, for example with diabetes in general. There is a great spinoff from that that will benefit people with diabetes of all ages.
Mr Harvey: I suppose our suggestion is that the wording might be tidied up a little bit to make sure that these programs can run the complete gamut of people with diabetes or any other organization. I think, in my presentation, we did acknowledge that that is probably exactly what the age limitation is for.
Ms Carter: Thank you.
The Vice-Chair: Thank you very much for appearing before us today. I know you took time out of your busy schedule.
The next presenters are in the hall. They should be coming in momentarily. There has been one cancellation at 3:30 so the 4 o'clock person has been moved up to 3:30.
ADULT PROTECTIVE SERVICES ASSOCIATION OF ONTARIO
The Vice-Chair: Can I now call upon John Gearin and Maria Van Hoeve to present, please. I want to thank you both for coming. Please do not be nervous. Before you begin, can you please state your name for the record. Take your time and you can begin whenever you are ready.
Mr Gearin: My name is John Gearin and I am an adult protective service worker from Victoria county.
Ms Van Hoeve: My name is Maria Van Hoeve. I am an APSW, an adult protective service worker from Peterborough.
We are here on behalf of the Adult Protective Services Association of Ontario. That is our association. They have previously submitted a written submission and that is being handed out as well but you have probably seen it already. We are also here on behalf of our local group of APSWs in the Peterborough area, which includes Durham from the Scarborough-Pickering town line to Cobourg and north to the counties of Peterborough, Victoria and Haliburton.
Mr Gearin: The adult protective services program begin in 1975 following the Hamilton guardianship project.
Ms Van Hoeve: Back then, a shift away from large institutions meant that more adults with developmental handicaps would be moved back to their communities. Due to the historical background of institutional care, communities did not have experience in long-term support or outreach services, and estimating the nature and number of supports required was difficult.
Mr Gearin: The Hamilton project suggested that the needs of these adults were largely social rather than legal and that it was more important to establish a service system to provide supervision and follow-up than to develop an elaborated system for legal guardianship.
Ms Van Hoeve: The APS program was designed to create this alternative by providing advocacy and case management to adults displaying developmental delays. Presently the need for advocacy on behalf of vulnerable adults arises in situations involving landlords, police, social workers, social agencies, the courts and other persons and professionals in the community. Advocacy is also required in the areas of housing, funding for adequate support in the community, vocational support, volunteers, accessible transportation, access to legal representation and emergency shelter. Duties of an APSW also include short-term trusteeship, counselling, life skills instruction, doctor and dental coordination and public education.
Mr Gearin: APSWs advocate and encourage self-advocacy as well. APSWs have been involved with the Ontario Advocacy Coalition, the Fram report committee and the Coalition Against the Use of Cattle Prods.
Ms Van Hoeve: By the way, the colour is something we chose to liven up your day, so we will not be referring to section this and section that. It will be the cherry-coloured piece of paper and the purple piece of paper.
APSWs at their jobs listen to, validate, believe and support the individuals we serve and advocate on their behalf as if we were in their shoes. APSWs respect the individual's way as being right for them and avoid all advocacy delivered "in the person's best interests."
Mr Gearin: APSWs are located throughout Ontario, are 177 in number, and some carry case loads serving over 30 people.
Ms Van Hoeve: All APSWs are employed and supervised by local generic or specialized agencies such as associations for community living, which are funded 100% for this service by the Ministry of Community and Social Services.
Mr Gearin: Conflict-of-interest situations can arise when the APSW, with instruction from a client, advocates with vigour against an agency while that agency happens to be the sponsoring agency that employs the APSW. APSWs have recognized that conflict-of-interest situations with sponsoring agencies and MCSS are potential and real.
For example, a colleague of ours worked as an APSW within a municipal office where an APSW supervisor also supervised general welfare, family benefits, a recreation program, etc. A client of the APSW confided that she had been sexually assaulted by her landlord, who used his key to gain entry. The APSW immediately set the wheels in motion to respond. He contacted the local rape crisis centre to counsel the woman through her trauma, and he and centre personnel advised the woman of her legal rights. The woman was willing to take the matter to court. However, the APSW supervisor, upon hearing the APSW's plan, strictly forbade the APSW to pursue court action as the perpetrator was a successful and well-known businessman in the community. Any action the APSW took would have resulted in a harsh reprimand, as the APSW would be acting against his employer's wishes.
Ms Van Hoeve: In the tri-county area we serve, Lindsay, Haliburton and Peterborough, we are very lucky in that we have been sponsored by a private board. The board has been in place for approximately two and a half years and is responsible only for the tri-county area APSWs. They are not responsible or accountable to any other agency or service. Some APSWs are supervised by boards as well, but these boards usually supervise other programs such as family counselling, public health nurses, hospital staff, college staff, etc. These boards may not see APSW concerns as a priority and may be at a loss to explain exactly what it is that an APSW does. In our area it is easy to see how independent sponsorship can alleviate all conflict of interest and make it possible for us as APSWs to advocate on behalf of our clients and not fear to be reprimanded.
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Mr Gearin: The APSAO initiated the direction several years ago to seek out a ministerial funding body that could supervise APSWs while not offering direct service, thereby creating no potential for conflict of interest. This was introduced to the Ontario cabinet in 1989 in the form of a brief, Protection for Whom?, presented by the Adult Protective Services Association of Ontario.
Ms Van Hoeve: We were wondering who would get the next paragraph with the word "vehemently" in it. I guess it is me.
Protection for Whom? vehemently suggested to the Ontario government that an independent advocacy system be set up. It suggested that guardianship and partial guardianship simply stripped persons of their rights and made them into helpless individuals who could not exercise their rights and did not have the right to have rights. APSAO also contended that APSWs were powerless to act with resolve for their clients without independence from the service ministry which pays their salaries. After initially placing APSWs in sponsoring agencies and proclaiming that APSWs provide advocacy and case management, the ministry seemed to become uncomfortable with this placement. In fact, the Ministry of Community and Social Services did not provide a mandate until six years after the forming of APSWs. It listed advocacy and case management as primary functions. The very next year the ministry issued a second, watered-down version of the guidelines which eliminated any mention of the APSWs' advocacy role. We feel that our example will indicate clearly to you that an independent advocacy system is essential.
Mr Gearin: The APSAO was established in 1980. The formulation of this association provides APSW members with a professional support system and a mechanism for systemic advocacy on behalf of the people we work for.
Ms Van Hoeve: With that said, we would like to present our critique of Bill 74 with relation to the APSAO submission. That is the white paper handed out.
Mr Gearin: Our association is very pleased with the introduction of this bill, as it upholds that all vulnerable people should and will have the opportunity to exercise their rights, not be subjected to abuse, have direct input into the direction of their own lives and to learn, as we all do, by the consequences of our actions and not by the well-intentioned wishes of others.
Ms Van Hoeve: We would now like to address the APSAO submission and elaborate on some of the points.
On point (b), no advocacy for children: In the process of developing an act involving advocacy for vulnerable people it is important to remember children. APSWs regard the ages between 16 and 21 to be the grey area. Persons in this area can easily slip between the cracks. Not only are children now becoming adults; they are now referred to adult services, subjected to funding changes, programming changes and the advent of waiting lists.
We dealt with a situation where a 19-year-old ward of the children's aid society was under the threat of being discharged with no future supports in place. This person had previously become a crown ward at age 11 when she was declared vulnerable and at risk, and had since received 24-hour-a-day supervision and support. We feel that advocates can monitor such CAS cases to ensure that there is no time when a person receives no services and is just a number on a list.
Mr Gearin: Point (c), no provision allowing emergency entry to facilities, is another important point. Advocates must have a degree of power if they are to be effective. Not only is this power useful in ensuring that perpetrators will know they have to correct their behaviour when dealing with advocates, but it instils faith in vulnerable adults who may be seeking assistance as well. As APSWs we are called advocates. We must strive to do whatever we can on the instruction of our clients, yet we have no legal power to back us up. APSWs who are very good often bluff their way through many situations of advocacy, but the truth is that we as advocates need consequential power to influence change.
Ms Van Hoeve: Point (d) in the submission, no clause on non-instructed advocacy: Any true advocate will wish to investigate abuse if it is suspected. A clause to give them this recourse when they deem it absolutely necessary and appropriate is an essential tool. Vulnerable people include those who cannot make their wishes and needs known, and these persons must be guaranteed safety, security and wellbeing.
Mr Gearin: Point (f), no minimum number of regional offices: This point is especially important to advocates in rural areas. Rural areas are often the last to receive services and these services are few and far between. Also, community standards vary. The important issues in one rural area may not be applicable to another urban area, such as Haliburton and Toronto. Although present ministerial regional offices may be a blueprint for determining locations, all areas may not benefit.
The act must allow for more diversity and coverage. Emphasis should be placed on the number of possible requests in ratio to the number of advocates available. Fifty persons in need of advocacy may not seem like a lot unless the advocate's office is in Peterborough and the person lives two hours away in Highland Grove. A provision is required to allow for culturally sensitive and prompt responses to vulnerable adults who require advocates. Also, as people served may be transient, it is pertinent that there be an interprovincial transfer acceptance.
Ms Van Hoeve: Point (g), no duty placed upon government to respond: As we mentioned before, consequential power is essential in influencing change. The government must be committed to imposing its power in order to influence unacceptable situations that must be rectified. Lack of backup, response and interest by the government will undermine the advocate's work and will lessen the faith people will have in the advocates and the commission.
Mr Gearin: Point (h), no promotion of community integration: The APSAO feels that the concept of integration should be stated in the act as a goal that must be reached as advocates perform their functions. We feel that community boards also have an obligation to stress and promote within the area served by them that access is a right and equality is a must. Advocates will reflect this philosophy when carrying out their daily duties. The APSAO currently recognizes media persons with an annual award to such journalists who promote integration in a manner that promotes dignity and understanding. In this way our association provides an example of how community integration can be brought to the consciousness of the community.
Ms Van Hoeve: Point (i), no duty to protect clients from abuse or neglect: Section 37 of the Child and Family Services Act sets out many examples of abusive situations that could be applicable to any one of us. Bill 74 should state that advocates have a duty to protect vulnerable adults and perhaps incorporate some of the wording of this section to set out the boundaries of response.
Mr Gearin: Point (j), inadequate protection for most vulnerable citizens: In addition to our September 1991 submission we would like to emphasize communication. Advocates should ensure that all methods of communication available are utilized and every effort be made to attempt to empower individuals to communicate their wishes.
Ms Van Hoeve: Point (m), no provision for research: We feel again with this point that the onus should be on the board, with direction from people served by it, to initiate research projects. Advocates cannot be expected to investigate this area along with performing their many daily duties. Perhaps universities should be encouraged to promote research at a post-graduate level, possibly with the aid of Wintario grants.
Mr Gearin: Point (o), potential abandonment in coercive situations: Although a person may say they do not wish an advocate to be involved with them, there may be situational factors that leave the advocate unsure of the person's real feelings.
For example, a woman residing in a nursing home had recently requested that her APSW assist her in finding her a job in the community. The APSW found her a job and returned to inform the woman. The APSW was met by the woman and the administrator of the nursing home and was informed by the woman that she no longer wanted to work outside the home. The woman was visibly upset when the APSW was informed of the new decision. It appeared that she had been coerced by the administrator into changing her decision. Again, there is a line between intrusion and assistance. Advocates should have some options in cases where coercion is suspected and adults ask advocates not be involved with them.
Ms Van Hoeve: Here are some other points we came up with. Education and ongoing staff training: With regard to education and qualification for advocates, we feel that a comprehensive training package would include these subjects: abuse recognition, reading environments and people; non-violent crisis prevention and intervention; philosophy; diplomacy; a course on bureaucracy -- finding your way around and etiquette; bush-beating and mustering community links, and the proper steps in advocating.
Mr Gearin: Ongoing staff support to advocates should include scheduled and regular supervision, adequate resources, support and regular meetings with other advocates and a comprehensive health and medical package, which may include personal counselling costs and/or physical fitness costs in keeping with stress management and mental health concerns.
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Ms Van Hoeve: The vulnerable adult: Thought should be given to the ramifications of the situation of vulnerable adults. Often they will be living with or in direct contact with the person the advocate is questioning. The adult may be left with the aftermath of an advocate's visit to deal with. Although this cannot impede attempts to uphold a person's rights, it should be taken into account when handling cases. Perhaps advocate education could cover this subject.
Mr Gearin: Decisions and accountability: Serious decisions and subsequent interventions should be presented to the board and discussed in order to ensure accountability and responsible action.
Ms Van Hoeve: Situations: As APSWs, we are aware of some of the dehumanizing and degrading situations that some vulnerable adults are subjected to. Adults living in some group homes have their daily lives and activities dictated to them. They have their roommates picked for them and their clothes and their food also. They may even have their medication prescribed to them as dictated by staff needs. For example, the doctor and the staff and the adult come to the doctor's office. The doctor then asks the staff, not the adult, what the problem is. The staff might reply that the person is having trouble sleeping and then receive a prescription for sleeping pills. It is possible that the adult receiving the medication is never even consulted.
Mr Gearin: There are adults who are grounded as punishment in their own homes. People are put on time-out programs, locked in their rooms, deprived of any stimulation and prohibited from seeing their friends.
Ms Van Hoeve: Adults can be evicted from some government-sponsored homes within 24 hours and continually hear the threat from staff and administrators as a way to modify their behaviour and make them compliant to home policy.
Mr Gearin: Adults are yelled at by support staff in what is supposed to be their own homes -- not that any service provider should have the right to yell at anyone, regardless of where it is.
Ms Van Hoeve: We are aware of a man who was sexually assaulting three women on a regular basis. The women and the man had all been labelled. When questioned, police said the man would not be charged because he probably was not competent. The three women's statements were not taken seriously because, "You people don't make good witnesses, you know."
Mr Gearin: We know of situations where siblings have unjustly attempted to have other siblings declared incompetent in order to maintain power over their inheritance.
Ms Van Hoeve: We know of cases where landlords have people sign leases that fall far outside the limits set out in the Landlord and Tenant Act for financial gain and control of the persons' living situation.
Mr Gearin: Adults are being denied generic services that are funded for all people by the province, for example, family counselling, men's violence groups, women's crisis shelters, all because of the label society has placed on them.
Ms Van Hoeve: We believe that examples such as these are proof that Ontario needs an independent advocacy system as suggested by Bill 74.
Mr Gearin: It is time to serve more than the squeaky wheels out there. Silent voices need the floor.
Ms Van Hoeve: People need a voice that will not back down, that has community backing and the law, if needed, on their side. The government needs to properly and promptly support this voice.
Mr Gearin: It is going to take all three political parties working together to right the wrongs that people we serve suffer daily.
Ms Van Hoeve: Rose Anne Davis is an APSW and colleague of ours from London. She made us promise to say we are damned good at what we do. We feel we are, and with this act up and running we can provide an even better service.
Mr Poirier: The principle is okay. Do you see any points in particular in the act that could be improved? Did you really take apart the act to find out the principle of the act and how it would help you or hinder you to do what you do in your everyday life? Have you found anything?
Mr Gearin: Yes, I guess basically the purpose of the act and why it was set up in the first place, the fact that vulnerable adults are being identified and that this act places recognition on the needs those vulnerable adults have.
Mr Poirier: But are there specific points in the act as it is written down? Did you get a chance to take a copy of the act and really try to translate that, point by point, into everyday working conditions for you as advocates?
Mr Gearin: Not at great length. I have skimmed through it a couple of times, not in the detail that I would like.
Mr Poirier: We are seeing a lot of people coming forward and just about everybody supports the principle, but they are finding out that when they study the act, between the principle and putting that into practice within a legal framework it is a whole different story. That is why I want to know. You might want to go back and have a very close look at the act to see what that means legally for you. According to what we hear in a lot of other places, it may not be what you think you are going to see with it. I just wanted to tell you that, because you told me you did not really go into detail. May we invite you to do so, and if you have some further comments make sure you bring them back to the committee. Thank you.
Mr Curling: I can see that you have lived the life of an advocate and you have shared your experience with us. I just want to share with you certain things too that all three parties, all three governments, have faced.
Early in your presentation you said the shift away from large institutions meant that more adults with developmental handicaps could move back to their communities. While in principle that is all very well, in the community where there is love and support that would be there and they can easily mix back with the community, maybe get that kind of help, what they have found is that when they have psychiatric patients in institutions and put them out of institutions the support system really was not there.
Mr Gearin: I do not mean to interrupt, but we do not deal with psychiatric patients.
Mr Curling: No, I am just using an example to say what is needed when you put people back into the communities. As I said and as my colleague was trying to say, we find that the principle is solid. If any government decides to send out the signal that this is the way to go, without giving the proper -- I think in the last part of your presentation you mentioned that support must be there. "Support" means adequate financial support. Then you actually articulate in detail the things that are needed for the advocate to do the job well, meaning we must have money in order to do that.
With reality hitting home these days, in other words, that there is just so much money to go around, do you feel that the government should make a pilot project first and see how it works or say, "We'll have advocates representing all types of people who need it badly, we know," and maybe come to a crush because they do not have the sufficient funds? Would you support the direction of going as a pilot project, or should they go ahead full blast and institute this advocate program?
Ms Van Hoeve: I think that at the moment the adult protective services program is sort of a pilot project in itself, in that we advocate on behalf of our clients, and it seems to work. We advocate in the community for supports for people we support. That is the hard part, finding the supports in the community, but as an advocate that is what we try to do in our community. I think we already do it and it does work.
Mr Curling: You are saying now that the pilot project is you and that is sufficient, that the governments have done their pilot projects and that we must go right ahead and fund this to its fullest cost?
Ms Van Hoeve: We were never set up as a pilot project but I think we serve as a good example of something that is a good idea and does work.
Mr Gearin: The model we use could be implemented to serve vulnerable adults across the province by patterning it against the APS setup right now.
Mr Sterling: You say in your brief that you support the right of an advocate to enter a facility. Subsection 19(1) of Bill 74 says "where there are or may be vulnerable persons, without a warrant and at any time that is reasonable in the circumstances." Do you believe that advocates should have greater powers than the police?
Mr Gearin: Personally, no.
Mr Sterling: Okay.
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Ms Carter: First of all I would like to welcome you both here, particularly since you have come from my neck of the woods. I have already spoken to Maria in my office. I want to congratulate you on doing a wonderful job. You are the experts on this issue. I think you are the people who know almost more than anybody what the problems are out there and how we need to deal with them. I want to thank you for some very good specific suggestions you have made in your brief. I think you have really given us the chapter and verse of why we need an Advocacy Act and filled in some of the gaps we may have had.
I have just one question for you. Your job comes in two parts: You do case management work and you do the actual advocacy of listening to people's wants. You say that you want to come under the Advocacy Commission when this goes through, that you want to become advocates. It seems to me that there is some balance in the job as you now do it. We had a witness this morning who was also a PSW, and she said that doing the case work helped her to achieve credibility with the people for whom she was advocating. I am just wondering what would happen, if in fact you did go under the Advocacy Commission, to the other part of your work, to the case work management?
Ms Van Hoeve: The association's stand is that we feel advocacy and case management cannot really be separated; they happen at the same time. A person comes into your office needing emergency housing. Case management says, "We will look at this, this and this," and sends them in the proper direction. Unfortunately there is a waiting list 50 people long for that same service. That is where the advocacy comes in, doing whatever is possible to get that person the services he needs. I think that could possibly apply under the Advocacy Commission. It is just part and parcel, we feel, of the same job.
Ms Carter: So you do not see case management as going beyond what is laid down in this act? As I understand it, it is listening to people, finding out what their wishes are and communicating those in the right quarters. You would see advocacy in general as sharing this responsibility for some case work?
Ms Van Hoeve: I think that in the process of getting to know someone and his needs, advocacy and case management do happen at the same time unless he has someone else who can advocate. Then, once the service was in place, the case manager could take over and manage that.
Mr Gearin: Could I add one comment? I appreciate the fact that you identified us as experts in this field. We are not. We are the front-line staff who face the walls day in and day out. The people who help our association, and who assisted us with writing the submission we gave you in September, are the experts. The other experts out there who will be able to tell you how this action directly affects them are the people this act was created for.
Mr Malkowski: Do you think all APS workers should be moved under the Advocacy Commission?
Mr Gearin: One more time please? Do all advocates --
Mr Malkowski: Do all APS workers agree that their jobs should be transferred to be under the Advocacy Commission?
Mr Gearin: No, but the majority do. For the past three years we have discussed it at our annual general meeting and asked, by a show of hands, who felt we would benefit under an independent governing body other than MCSS, which has potential for conflict of interest. Not all APSWs agree but the majority agree that the program should be transferred.
Mr Malkowski: You would say the majority of APS workers agree it should be transferred to under the commission.
Mr Gearin: Yes.
Mr Sterling: Just as a clarification, in terms of the case load you undertake, how does the client get to one of your workers?
Mr Gearin: We have various ways: through hearing from friends who are also being served by our programs, police, social workers, the ministry being called. MPPs' offices call us on a regular basis, and the courts, crown attorneys, the jails sometimes.
Mr Sterling: You do not have any MPPs as clients, though, do you?
Mr Gearin: No comment.
Interjection: That is confidential.
Mr Gearin: That is confidential.
Mr Sterling: I asked the question because Rideau Regional Centre is not far out of the area I represent. I have always been concerned with clients who leave that institution but are lost once they get out of there. There is no tracking system as such when a resident of Rideau Regional is put out in the community. As I understand the law, the ministry loses its responsibility 90 days thereafter. After 90 days, if that individual gets lost, he gets lost.
Mr Gearin: I am not sure whether it is 90 days. At one point, when the government was looking at deinstitutionalization, there was an open-door policy in any facility for adult mentally handicapped adults. Anybody who expresses interest in walking out can walk out. The best the institution can do is try and hook the individual up with an APSW or another association for community living, but there is no onus. The responsibility leaves once they leave the doors, I believe.
Again, I guess we should have been a little clearer as well. Our program is entirely voluntary in that nobody is ordered or can be made to report to his local APSW office. We do see people we feel we might be able to serve, but the choice is theirs. I believe that in this province you are competent until proven not. If you say you do not want service, you cannot be forced.
We are presently undertaking a survey to see if there is any way we can track some people, because recently some of our colleagues stumbled across a boarding house housing people who had left St Lawrence Regional Centre. Ten years after they had been discharged they still had the same clothes on as when they left. They were clearly marked -- well, they were faded. These people were forcibly confined in their rooms. Their clothes reeked of urine. The operators of the home were collecting extra money from the government to pay for cigarettes for these people who apparently did not smoke.
Mr Sterling: My concern with the deinstitutionalization part is that in the last three governments it has been taken to a ridiculous end, and that is that the people who are left in Rideau Regional -- I think there are 800 patients or residents -- are not only mentally challenged but are challenged, many of them, with many physical disabilities. Putting them out in a community is not necessarily going to give them a better life in the end. They may not have as much freedom in the community as they do within Rideau Regional, which is quite a large residence, etc. My concern is that those people who want to argue that deinstitutionalization is the be-all and the end-all do not take the responsibility for going and tracking the 2,000-odd residents who have left that institution and asking them whether they are happy and whether they are living in the exact standards you have just outlined.
The parents of the people in that institution are very concerned because it cannot track some of the former residents. They have either died a short time after they have left the institution or they are somewhere and nobody knows where they are. There is a confidentiality-privacy issue, but there is also a caring issue in terms of society dealing with these people.
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Mr Gearin: One important fact you may want to keep in mind is that the incidents we hear about where people are not having a good go of it out of the institution -- are you hearing about only the bad ones? Do you hear the success stories? I work with people who -- one gentleman in particular whom I started working with six years ago is now part of the family. He was institutionalized at two, taken away from his parents and, because he was deaf and was not a prime candidate to be adopted, was placed in Smiths Falls. He is of normal intelligence. He was stuck in the institution, where his ability to learn and develop was severely impeded, for 25 years. He is out working on his own. Sure, he has his tough times, but with proper support he has come a long way.
Mr Sterling: I think the individual you are talking about is probably very high-functioning. But what has happened over time at Rideau Regional is that those people are all gone now and you are left with people who are very low-functioning. The concern is that if you close that kind of institution up without adequately providing in the community -- some of them have to wear helmets around all the time so that they do not injure themselves. You are getting down to people who need a phenomenal amount of care. It is questionable whether it is kinder of society to put those people out in the community and not keep track of them or to leave them in a residence which can care for them.
The Chair: Thank you, Mr Sterling. On behalf of the committee, I would like to thank you, Ms Van Hoeve and Mr Gearin, for coming and giving your presentation today.
Mr Gearin: Thanks very much.
DON WEITZ
The Chair: I would like to call forward our last presenter for the afternoon, Mr Weitz. Good afternoon. As soon as you are comfortable, please identify yourself for the record and then proceed.
Mr Weitz: My name is Don Weitz. I hope everybody has a copy of this brief and my letter to both Mr Cooper and Mr Morrow. I did not mean to leave out anybody else. I just thought I would put that since they are the Chair and Vice-Chair. Anyway, everybody is involved.
As I have said in my covering letter, I have included a copy of an article I wrote on very vulnerable children covered by the Child and Family Services Act, but as you will note, I hope that advocacy also extends to children, especially those who are locked up and often treated against their will, where consent is provided by the parents or guardian.
I have also included a short bibliography which lists some of the key sources or references in the medical and psychiatric literature regarding the brain-damaging effects of common psychiatric procedures, specifically electroshock, otherwise known as ECT or electroconvulsive therapy, and psychiatric drugs, particularly the neuroleptics, popularly called the major tranquillizers or anti-psychotics.
Thank you for allowing me the opportunity to come. I am representing myself, although I have been associated with various groups. As I said on the first page of the brief, I have been involved as a cofounder of a self-help group, which I understand still exists, called On Our Own, and cofounded the first anti-psychiatry magazine in Canada -- I think it still is -- titled Phoenix Rising.
I call myself a psychiatric survivor, not a consumer, a very misleading and unfortunate term for people who have survived abuses and mistreatment at the hands of health care professionals where there is very little or no choice. "Consumer" or "consumerism" implies choice. There is very little choice in the so-called "mental health" -- quotes around that term -- system in Ontario or anywhere else in Canada.
Where I am coming from is this. I want you to know where I am coming from, what my political perspective is, and I like to be upfront about it. I was locked up, against my will, some years ago during the Korean War. Fortunately I did not have to fight in that one, my parents arranged to have me committed against my will. I was, in the middle of the night, dragged from one end of the state of Massachusetts to the other, not knowing which hospital I was going to end up in. It was called the McLean Hospital, which is one of the most prestigious psychiatric teaching institutions in the United States and is affiliated with Harvard University medical school and Massachusetts General. Anyway, to make a long story short, I was facing barred windows, a barred door, and within two months, I was subjected to the horrors of subcoma insulin shock treatment, which has never been officially banned in North America but has fallen into disuse. Anyway, I was never informed about the coma that I lapsed into. I was supposed to get subcoma, just before you go under. No one told me about the coma, which is a very common risk and which resulted in a number of deaths while people were being subjected to this so-called choice of treatment for schizophrenia. That is what I was diagnosed as, but my doctor never told that diagnosis to me. I had to find that out many years later by asking for a copy of my records, which took about four or five years to obtain.
I also want to mention very briefly the suicide of my dear cousin, Hope, whose father arranged for her to have a lobotomy and to have her committed -- against her will, of course -- in at least three or four psychiatric institutions, including the one I was in, but she was there at some other point. She had been on 20 different psychiatric drugs, had become addicted to at least two of them, and her health was directly threatened by several so-called safe psychiatric drugs. She was the black sheep of the family, too, if I may use that term.
I am coming here today to urge you to stay on the track of advocacy, to push hard for -- that is not the only thing I am going to say about that -- this act, which is not perfect, of course. But for far too long people in psychiatric institutions particularly, who are some of the most vulnerable people in our society, have not had the benefit of independent advocacy. They do not get independent advocacy now despite the fact that there is something called the psychiatric patient advocate office. It is not independent. All 12 advocates who work in the 10 psychiatric institutions work under a conflict of interest.
We warned the Ministry of Health in 1982 or 1983. I was consulted along with Carla McKague, probably the most outstanding advocate for psychiatric patients in Canada, who is with ARCH, Advocacy Resource Centre for the Handicapped. We told Ted Ball and David Corder, I think, at the time, "Guys, don't set it up the way it's going to because as long as you pay the advocates and make them accountable to both you and the patient there's going to be a conflict of interest." They did not listen to us. We also told them that the vast majority of the cases or issues coming to them would be legal issues, human rights issues. "No, no, no, you're exaggerating," is what we were told. Sure enough, the second and third reports of the psychiatric patient advocate office showed that 45% of the issues coming before the advocates were legal.
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I am very concerned, despite the fact that the advocates will be accountable to the Ministry of Citizenship, that there be strict independence, that there will be absolutely no scintilla, no shred of suspicion that these advocates are not independent and working for their clients as an advocate should, as all lawyers know.
Second, I want to stress the fact that in my opinion -- and I think it is an informed opinion because I have been on several committees and boards in my life -- all commission members should be from the vulnerable groups. Not a simple majority; 100%. Why do I say that? Because if you want to give substance, meat, to the meaning of empowerment, that is how you can do it in concrete form. I am not talking about 61% or 51%.
I am sick and tired of hearing proposals that say, "Well, we'll just get a simple majority," and get on a commission. Say there were nine, and two of those nine are not from vulnerable groups but were mental health professionals or just health professionals. More often than not, health professionals dominate and manipulate on committees, in my experience, and I do not want to take that risk, certainly as long as I have something to say about it as a citizen. You get two professionals out of eight, nine or 10 and they will control the damn board. There goes your independence of thought, and there will be intimidation despite best intentions.
No, no. We have to have 100% on this commission from all the vulnerable groups -- the hearing-impaired, vision-impaired, physical mobility-impaired, psychiatric survivors and the elderly -- in my opinion some of the most disempowered groups, and people who call themselves child advocates.
I am a stickler for gender equality as well. I am convinced that if we had more women maybe some of the decisions would be a lot more humane. I have to tell you that I have been on a number of boards where a number of my other male colleagues who think they know what is best for women too are dead wrong and often communicate a lot of sexist stuff as well. Certainly in this day and age of equality I think it is time that we had no less than 50% of the people on any board of committee -- in this case I am talking about the Advocacy Commission -- being women. There also should be representation from the aboriginal people, first nations.
I want to talk a little bit about informed consent, something I was absolutely denied when I was locked up at McLean Hospital, which my cousin Hope was denied, and I have to tell you that in this great age in the province of Ontario there is virtually no such thing as informed consent in a psychiatric institution. I can back it up. You do not have to go and talk with psychiatrists. You just have to watch and talk with the people who have been the recipients of psychiatric treatment.
Psychiatric drugs are handed out like candy on the wards. Conservatively, 95% of people who end up in psychiatric facilities are subjected to psychiatric drugs. We are not talking about aspirin here. We are not talking even about Valium most of the time. We are talking about the heavyweights, mind-controlling drugs -- I am not the first and I will not be the last to use that term -- brain-damaging chemicals that are known to cause brain damage but which the psychiatric profession irresponsibly trivializes and denies. It is outrageous.
The Canadian Psychiatric Association: "Oh, no. It's safe. It's safe. It's safe." A new drug comes on the market with inadequate testing like clozapine, the so-called miracle anti-schizophrenia drug. Oh, boy, it only causes epileptic seizures in 5% of the cases, that is all. It causes a potentially fatal blood disorder in over 2% of the cases. The drug manufacturers say it, National Health and Welfare says it, but I wonder what the psychiatrists are saying to their patients. There are about 80 of them on clozapine. This is only the newest of the neuroleptics for schizophrenia.
I am trying to get a copy of the consent form under the Freedom of Information and Protection of Privacy Act -- I probably will never get that -- that is specific to that drug. I want to know what the people are told. I will bet you they are not told. They are supposed to be told about epileptic seizures and agranulocytosis. But I want to see a copy of that consent form because what I am telling you is that people are being lied to under the name of medicine and science. I know what I am talking about. I have seen over 100 people on psychiatric drugs, conservatively -- not just seen them; talked with them. I said: "Were you told about tardive dyskinesia when you were given Haldol or any of the other 20 neuroleptics?" "No. What's that, Don?"
It has only been known for 20-some years that when you give somebody a chlorpromazine or Haldol or Mellaril or Stelazine, this is from the class called the phenothiazines, except for Haldol, but they are "neuroleptics," and the term means nerve-seizing, a very appropriate term. Tardive dyskinesia occurs in up to 40% to 50% of people on any of one of the 20 neuroleptic drugs otherwise known as major tranquillizers, and it can start as early as six months after continuous drug use.
I have seen what the Clarke Institute of Psychiatry hands out and tells its patients about this. It is disgraceful; it is unethical. They do not say it is permanent. This is a permanent neurological disorder, iatrogenic, caused by the drug. But do you think the Clarke has the guts or intellectual honesty to tell that to its patients? No. They will cover it up because they want its patients to take the drugs so that they will be more manageable or controllable. That is the real hidden purpose of the drugs -- quiet wards, guys, no problem, no trouble.
So when I read "consent to treatment," I think of all the people who have never had consent. I think of my cousin. I think of my friend Mel at Queen Street. I think of a lot of other people who have had shock treatment who never knew that their brains would be scrambled and that they would have permanent memory loss, which occurs as a rule, that their brains would be for ever damaged, who were never told, because if they were honestly told that I am very sure they would not have consented.
Who is going to monitor these people? Who is going to monitor the doctors to ensure there is such a thing as informed consent? I agree that informed consent is finally spelled out in legislation, and whoever drafted that I congratulate, finally. It is also spelled out in the Child and Family Services Act but I still do not have faith that the psychiatrists are going to describe the procedure in detail, including the risks. So that is a problem for you. It is not just a problem for you; it is a problem for all of us.
How are you going to monitor that? How are you going to make sure that people have informed consent? By the way, I typed in that consent should be written and should not be implied. Please take out the word "implied." It is too vague and subjective. It is unenforceable.
If someone is jerking his or her head like that, the doctor might say yes. The person is jerking his head because involuntarily he's got a side-effect from a drug, which is interpreted as assent. That is very possible. I do not like implied things when it comes to consent. You should have it in writing. When you are talking about pills or electricity going through the brain -- I am talking about 150 volts of electricity, because that is about the average amount given in the so-called modern or modified form of electroshock that is given at the Clarke and other places -- people should damn well be very careful as to what they are signing.
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So, yes, I am very concerned, and yes, the treatments make the vulnerable even more vulnerable. That is the terrible irony and tragedy of this in psychiatry. I wish I had a dollar for everybody who told me: "Don, I am sorry I trusted my doctor, because when I came out I was worse." I would be very rich. Almost everybody I talk with comes out worse after being treated by a psychiatrist or psychiatric staff of some kind. So I am very concerned about safeguards; you are damn right I am.
The Chair: I was wondering if you would like to carry on or whether you would like to allow some time for questioning.
Mr Weitz: I would like to allow time, but I want to carry on, if I may, for three to five more minutes.
The Chair: Yes, you have a few more minutes; that is fine.
Mr Weitz: Thank you. I get very passionate about this.
The Chair: I realize that.
Mr Weitz: The issues demand it, and whether I am alone or not does not matter, because I am going to say these things. By the way, since I have said that certain procedures in psychiatry are very dangerous -- I have in mind electroshock and neuroleptic drugs, and I should have added the anti-depressants, all of which cause brain damage -- psychosurgery should never be given, never be prescribed to anybody who is "judged incapable." Under the Mental Health Act, you can give psychosurgery to somebody who says, "Yes, oh sure, I'll have it," if the person is voluntary. I do not want to play games here. You cut it out completely, because it is as serious -- it has been thoroughly discredited around the world, and it is a brain-mutilating procedure.
You would think we would have learned our lesson from the 1950s, but apparently not, because psychosurgery is still in the act. About 300 to 400 procedures are being done in the United States every year, and I understand that the Clarke has referred two or three people for psychosurgery in the last year. So it has not been totally abolished, in case some of you think it has.
Electroshock is on the increase in both Canada and the United States, and conservatively 1,500 to 2,000 people a year get it in Ontario. I cannot get accurate shock statistics because the Ministry of Health in Ontario does not keep accurate shock statistics. It is like trying to pull teeth. They are not published, by the way, nor is cause of death in psychiatric facilities published. How do you like those beans? I have been after this for eight years. Publish cause of death in psychiatric facilities the way it is published in other health facilities. You cannot get the minister to move. It is an interesting omission in the stats.
Finally, everybody should be considered competent, capable. Presumption: why is it in section 8? It should be up front, under the word "capacity." Put it up front. That is a principle that this government is prepared to back: the presumption of competence.
The way it is, psychiatric staff need their heads turned a bit. I think they need quite a bit of education, because they do not presume or assume that we are competent when we go into admissions or emergency. They are all set to make all kinds of decisions for us. I think that is damn patronizing, it is unfair and it is irresponsible. You do not think incompetence or incapable just because a person is in need and because he or she looks funny or talks funny, or you cannot understand him or her because you did not bother to take the time to understand him or her. You assume competence. Of course, the word is "capable."
What words. They are such sweeping, all-inclusive terms. How dare I call you "incapable"? That is absurd. You can be capable of some things and incapable of other things. I know the act says it, but it needs to be emphasized: the principle of presumption of competence to make treatment decisions and so forth. That is what I wanted to say.
Finally, I want to add that I think it is time there was a bill of rights for vulnerable people in health care facilities. Nursing homes have a bill of rights, and I am glad they do, but I just wonder how enforceable it is. But for people in psychiatric institutions, institutions for the developmentally handicapped, group homes and so forth, there is no bill of rights. There is no bill of rights in law, and I want to see a bill of rights, if not in the Advocacy Act, then in a separate act, a bill of rights act for vulnerable people. I think it is time, and I want the government to put up stiff penalties for violations.
I included this draft bill of rights that I wrote, which I drafted based on one that was approved by the self-help group on our own back in 1982. It is not a lot to ask, but I think if we included a bill of rights that was enforceable and that had severe penalties -- none of this $5,000 stuff; $20,000 -- you may then say: "Oh, that is quite a bit of my money. Gee, I could be sued for $20,000." Right now, this is a joke. It is a slap on the wrist to say that someone who violates something gets fined up to $5,000; that is maximum. It should be $20,000 at least.
I think that is about all I am going to say, and I am going to leave time for questions.
Mr Poirier: Thank you, Don -- if I may call you Don -- for coming forward and doing this. I have looked as quickly as I could, because I was too intent on listening to you -- I tried to listen with one ear and look with my eyes at least at your bill of rights for vulnerable people. Some points I have absolutely no problems with, right off the bat. But with your first point, "the right to remain free of confinement in any health care facility," I thought of schizophrenics for one, because we had a lot of testimonies from family and friends and supporters of schizophrenics. Before you start to answer, because I know once you get going --
Mr Weitz: I am not answering.
Mr Poirier: Once you get going, we cannot stop you, but that is okay.
Mr Weitz: Some have been able to.
Mr Poirier: Further along in your other points for your bill of rights, Don, you are talking about "the right to choose our own doctor, therapist or counsellor while confined." The first point says "the right to remain free of confinement." Can you put that together for me?
Mr Weitz: Sure. That is a statement that people have a right to be free unless charged with a criminal offence. I could have spelled it out "and is charged under the Criminal Code with an offence." Everybody has the right to remain free. A lot of people have been locked up, as you know, because they may talk too loud or say weird things or embarrass their family, and without benefit of trial. Everyone has the right to remain free. That is fundamental in a democratic society unless you are charged with an offence and convicted.
Mr Poirier: Let me be the devil's advocate, if I may, okay? How about somebody who is perceived or known to be a threat to some other people's lives?
Mr Weitz: We have this Criminal Code, as you well know. The Criminal Code and civil code -- not the civil code, but under the --
Mr Poirier: Common law?
Mr Weitz: Under the civil law, or common law, if I threaten you, you can use the law as it is to charge me with whatever, be it assault, be it libel or whatever. The law is in place. But do not use the places called psychiatric institutions for putting me away because I may be a nuisance or trouble to you or your friends or whatever.
Mr Poirier: But maybe you could be a threat without even threatening me.
Mr Weitz: How?
Mr Poirier: I guess I would find out too late, would I not?
Mr Weitz: You would have to spell that out. If you are advocating preventive detention, that was outlawed under the Canadian Bill of Rights, as you know, even before the charter.
Mr J. Wilson: That is right. Under John Diefenbaker, as I recall.
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Mr Weitz: Exactly, under Diefenbaker. That is one good thing I respected Diefenbaker for, but I do not have much respect for a lot of stuff in government. Do you know that in this society -- and it is outrageous; think about it -- preventive detention is alive and well in Canada and the United States in the form of involuntary commitment? Locking people up without trial or due process. That is justified in society -- meaning we. Why? Under the guise and sham of mental illness, without a trial. That should be abolished. You should not be able to lock people up without due process. Where are your principles? This government has condoned it. Every government, unfortunately, in North America, in Europe has condoned it: locking people up without trial.
Amnesty International still refuses to call involuntarily committed psychiatric survivors political prisoners. But when it happens in the Third World or when it happens in a poor country or in the Soviet Union, oh, sure, they are political prisoners. Not in Canada, where we do the same damn thing. Come on.
Mr Poirier: Okay. I want to be informed. That is why I am asking that question.
Mr Weitz: Well, that is what I am saying to you.
Mr Poirier: What if you have the state of mental health that would cause you to do harm to somebody else? How can you try that person? Would they be legally guilty of threat when it is the state of their mental health?
Mr Weitz: First of all, I do not buy the concept and the fiction of mental illness, which is logically absurd to begin with, because the mind is an abstraction, it cannot be diseased.
Second -- and I could go further, but this is not a discussion of the pros and cons of the concept -- you have no right to touch me or lock me up unless I have been charged, arrested and convicted. Unfortunately, we have legislation on the books in the form of the mental health act in every province and territory which allows just that. If I threaten you, then damn it, charge me, but do not play games with me, which is what the governments and authorities are doing now.
They are putting people in places called psychiatric hospitals which are even worse, in some respects, than prisons, and calling it treatment. It is not treatment; it is cruel and unusual punishment where you are intimidated. If you have ever spent time in a psych ward, you will know what I am talking about -- or spent even a good amount of time working or observing. It is coercive, it has nothing to do with free choice. Your freedom is taken away, every hour or second of the day is virtually accounted for, the doors are locked and the treatment is prescribed for you without your informed consent. You cannot leave the institution when you want. Now, are you telling me that this is treatment or this should be helpful to someone who threatens?
Mr Poirier: Are you telling me that every person who is injured or killed or whatever first has to receive a threat from the person who is going to harm him?
Mr Weitz: You are not allowed to do anything unless the person has broken the law. Has he or she broken the law or not? It is very simple. It does not matter if he is hearing voices or not. A lot of us hear voices; even Gandhi heard voices. Of course, they locked him up too, not to mention Martin Luther King and some of the great leaders. It does not matter to me whether someone is telling me to go after someone; do I break the law or not?
This insanity defence should be scrapped too. The civil rights lawyers, I am sure, can be much more eloquent than I can about the justification for scrapping the insanity defence, which has resulted in a host of injustices.
Mr Malkowski: I have read a book called Shrink Resistance: The Struggle Against Psychiatry in Canada. I thought that was an excellent book and I recommend it for all MPPs to read. It is an excellent reference.
Are you aware that all the commissioners who will be nominated to the commission and the commission itself will be consumer-controlled?
Mr Weitz: Yes, I am, but a simple majority is not sufficient for me. It may be sufficient for you. Of course, I am glad it is going to be controlled by people who are still very vulnerable. But for the sake of empowerment, which is the first purpose in the act -- empowerment with a capital E -- 51%, to me, is not good enough. It should be 100% if we really mean empowerment.
Mr Winninger: I think it is important that we not lose sight of some of the important points you have made today. I was particularly struck by your point about the conflict, perceptual or actual, that the psychiatric patient advocates experience right now, when they are being paid through the Ministry of Health and yet are advocating for patients who are in fact, in many cases, involuntary patients of the Ministry of Health. I think you made a very legitimate point there.
Second, I think you have made a very strong case for advocacy. You have described some of the negative side-effects, the iatrogenic effects -- you used that word -- of a lot of drugs that are administered, and certainly there is a very potent role for the patient advocate when advising a patient of his or her rights and he is being asked to consult a patient who may be receiving treatment on an involuntary basis.
Last, you did mention that there are many patients who may lack capacity for some functions but have capacity for others.
Mr Weitz: That is right.
Mr Winninger: Do you see a role under our Bill 108, the Substitute Decisions Act, for guardians who might be able to represent those patients and make decisions for those patients in some respects while in other respects deferring to the self-determination of the patient?
Mr Weitz: Yes. As long as the guardian takes the time and is committed to carrying out the expressed wishes of the person about whether he or she wants this particular treatment or not and so forth, as long as the guardian carries out what the person he or she is nominated to represent wants, I have no problem.
The Chair: Mr Weitz, on behalf of the committee I would like to thank you for taking the time out today and coming and giving us your presentation.
The committee adjourned at 1557.