ONTARIO SOCIETY OF PAEDIATRIC DENTISTS
ONTARIO PSYCHIATRIC SURVIVORS ALLIANCE - METRO TORONTO CHAPTER
MEMORIAL UNIVERSITY OF NEWFOUNDLAND
ONTARIO ASSOCIATION OF SPEECH-LANGUAGE PATHOLOGISTS AND AUDIOLOGISTS
ADULT PROTECTIVE SERVICES ASSOCIATION OF ONTARIO
CONTENTS
Friday 14 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
Ontario Society of Paediatric Dentists
Dr Jack Maltz, representative
Ontario Psychiatric Survivors Alliance - Metro Toronto Chapter
Shoshannah Benmosche', member
Memorial University of Newfoundland
Morris Saldov, professor of social policy and community development
Terry L. F. Parker
Ontario Association of Speech-Language Pathologists and Audiologists
Rick Welland, member, legislative affairs
Sheila MacDonald, chair, cognitive communications disorders group
Adult Protective Services Association of Ontario
Gianni Corini, past president
Steve Tennant, adult protective services worker
Pat Chefurka
Melane Hotz
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):
Curling, Alvin (Scarborough North/-Nord L) for Mr Sorbara
White, Drummond (Durham Centre/Centre ND) for Mr Fletcher
Also taking part / Autres participants et participantes: Auksi, Juta, Ministry of Health
Clerk / Greffier: Freedman, Lisa
Clerk pro tem / Greffier ou greffière par intérim: Deller, Deborah
Staff / Personnel: Swift, Susan, Research Officer, Legislative Research Service
The committee met at 1012 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.
The Chair: I call this meeting of the standing committee on administration of justice to order. I would like to advise the members that some of the people at the back of the room are having a little difficulty hearing, so when you are speaking could you please speak closer to the microphone rather than leaning back in your chairs?
ONTARIO SOCIETY OF PAEDIATRIC DENTISTS
The Chair: I would like to call forward our first presenters, from the Ontario Society of Paediatric Dentists. Good morning.
Dr Maltz: Good morning. Happy Valentine's Day, everybody.
The Chair: Thank you. Could you please identify yourself for the record and then proceed.
Dr Maltz: Sure. Can everybody hear me? Ladies, gentlemen and honourable members of the Ontario Legislature, I am Dr Jack Maltz, making this presentation as president on behalf of the Ontario Society of Paediatric Dentists. We have a special interest in Bill 109, since as paediatric dentists we are the specialists who provide comprehensive dental care for children, adolescents and special patients who have mental, physical and emotional problems.
We are all here today for one purpose only: to better serve the people, and specifically the children, of Ontario. The intent of Bill 109 may be to serve that purpose, but as the bill is now drawn up it is very complex, confusing and not at all user-friendly. The bill is drawn up in such a way as to complicate needlessly what may be simple clinical procedures and it potentially gives too much power to young children before they are fully ready. The act is very ambiguous and creates potential problems where there do not seem to be any now.
The whole process of consent is redefined and is more complicated in many ways. Procedures to obtain consent under Bill 109 are onerous and burdensome, whereas until now they have been simple and straightforward. When Bill 109 comes into effect, if consent is given, it may not be valid or it may be refuted. Instead of assuming consent by the parent who brought the child into the dental office, a whole new inquiry process goes into place. If there are two parents, will I have to get consent from both? What if they are separated or divorced, and who has custody? Will I need proof of custody? If they disagree, will I have to call an advocate?
In my interpretation it takes away much of the power from the parents and assumes that parents will not act in the child's best interest. The bill may delay treatment and make treatment more complex, unnecessarily increase the cost of treatment and inflict needless pain and suffering on the children of Ontario. The management of difficult children will become more complicated and lead to potentially more painful procedures at a later date. The cost of health care, due to delays and complex treatments, will increase substantially for the government and for individuals involved. As a paediatric dentist I can foresee a whole new set of obstructions and legal manoeuvres that will not enhance dental treatment on behalf of the children of Ontario.
I would now like to go into specific sections of Bill 109 and follow certain interpretations, as I see them, to a logical conclusion. The crux of the problem is the judgement as to whether a child under 16 years of age is capable. According to my reading of subsection 8(2), anybody under the age of 16 is presumed to be incapable but the presumption may be rebutted, making the child capable for dental treatment. When a person becomes capable his own decision to give or refuse consent governs according to subsection 7(1). Thus, if a child refuses consent dental treatment may not be carried out.
Under subsection 10(7) if a child refuses to give consent for treatment on his own behalf, the dentist will have to start the difficult process of advising the child of his rights to meet with the advocate, and notify the advocate even over the parent's objections. The advocate may have to be called in even before the child is examined. Since many children may object to a fluoride treatment, dental injection or even cleaning of teeth, the advocate may have to be called in for trivial dental procedures that many children object to.
If the dentist judges a child under 16 years old to be incapable and wishes to carry out a procedure, the parent or family member may give consent according to paragraphs 1 to 8, subsection 16(1). However, it is not at all clear that the clinician can continue treatment according to section 17(b), where a family member or a parent cannot give consent if the incapable person might object to him making that decision, leaving the dentist in a quandary.
I would now like to go into some clinical applications of these interpretations and see how the law would impact on children refusing dental care in Ontario. A child is a growing individual and lack of proper treatment may lead to severe problems in the adult dentition that cannot be remedied at a later date. In a child under 16 years and medically compromised, who refused to consent to routine dental treatment, the situation may become more serious. The lack of timely dental care may affect the child's health and wellbeing.
The act does not envision children crying for relatively benign procedures, such as topical fluoride applications, cleaning of teeth, or the taking of pre-operative antibiotics. However, even these benign procedures, if not carried out, can lead to devastating consequences. A child who is a haemophiliac may refuse to take his topical fluoride application. This innocuous preventive measure, if not carried out, can lead to much more extensive treatment, hospitalization and even death. Many children strenuously object to these procedures, the consequence being that more painful and complicated procedures will have to be carried out at a later date if preventive procedures are not done in a timely fashion.
In a perfect world all things work perfectly. In reality, Bill 109 will unnecessarily delay treatment for a short period of time, and in some cases where there are appeals and delays, backlogs may reach unacceptable levels, especially if the system is clogged with trivial cases and unexpectedly heavy case loads, leading to shortage of staff and inadequate funds.
The cost of Bill 109 will be more expensive than the envisioned $20 million to $30 million if the number of consultations are more numerous than expected; and, as it is drawn up, I foresee it being used on a daily basis in all paediatric dental offices. What about lost operating time, lost hospital beds and operating room time? Who will reimburse the dentist for lost time and for consultation time with the advocate?
According to Bill 109, emergencies can be treated without the consent of the advocate. However, "emergency" is not adequately defined. Many dental emergencies are not life threatening or permanently disabling but, as many people can attest, very painful. Will we be able to do any work without consent?
In conclusion, Bill 109 was drawn up with excellent intentions. We have no problem with the intent of Bill 109. Nobody can object to the government appointing an advocate for the person who requires one. However, the way the bill is drawn up it will lead to unnecessary increase in suffering to the children of Ontario, and increase in cost to the parents, professionals and the taxpayers of Ontario.
I feel many of the pitfalls can be eliminated or tidied up by consultation with the professionals who are providing the care to the children of Ontario. Our group would be more than happy to do our part to help draw up a bill which would benefit everyone and protect the rights of the children and incapable adults.
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We recommend that Bill 109 be drawn up so that in regards to dental procedures:
(a) In the case of children under the age of 16, the responsibility should be accorded to parents, guardians, family members or public guardians and trustees;
(b) Children over the age of 16 should take on the responsibility themselves, or in conjunction with a parent, guardian or public guardian and trustee.
Thank you very much for taking time to listen to our concerns.
The Chair: Thank you very much. Questions and comments? Mr Wilson.
Mr J. Wilson: Thank you, doctor, for your presentation. I am just not familiar with what steps you must take now in your office to obtain consent. Can you go through that?
Dr Maltz: Yes, I would like to go through that, if you do not mind. If a child comes into my office, for consent I speak to the parent who brought the child in, and that usually is enough. Sometimes, in rare instances, with both parents working, somebody else brings the child in -- an aunt, an uncle or even a neighbour. In cases like that, if there is an emergency treatment, I will notify the parent. Otherwise, I will proceed with an examination and then notify the parent.
Mr J. Wilson: Is there a legislated regime that you have to follow?
Dr Maltz: Yes. Right now we have to get consent from the parent.
Mr J. Wilson: From the parent.
Dr Maltz: Or a guardian.
Mr J. Wilson: Okay. Thank you.
Mr Wessenger: I would like to know how often in your practice you have children objecting to treatment.
Dr Maltz: You do not really want to know, do you?
Mr Wessenger: Yes, I would like to know. How often does it happen?
Dr Maltz: The thing is, we see children literally from newborns until the age of 18. I would really say two, three, four times a day. The thing you have to remember about children is that sometimes they yell and scream and carry on and they are not really scared; but this bill does not give me any leeway. The child may be just scared of new situations. If a child comes in yelling, screaming and crying and says, "Hey, I don't want to be here," according to my interpretation of this bill, I have to start putting a whole procedure into place, whereas right now, as long as the parent understands that the child is in -- I speak to the parent: "Why is this child crying?" They may say, "He won't listen" or "He had an operation last week" or "Oh, he just doesn't adapt well," in which case we deal with the situation differently. If a child had, should I say, reason for fear, we would try to calm his fears. If he says, "I don't like injections," we say, "Today we're not doing injections." That usually works. If it is a very young child who is just being stubborn, the thing is, we just go ahead and do the examination with the child sitting on the parent's lap.
Mr Wessenger: The next question I have is, with respect to the children, you feel they are unhappy being there. They are probably all unhappy being there; as adults, I do not think there is any difference. But do you have much problem with older children, say age 10 and up? Do you have much problem with them?
Dr Maltz: Yes, we do. The basic problem with young children is that their fear is unknown fear, it is a new situation fear, a new and a strange place. Older children are much wiser. They know what to fear. The thing is, they have much more specific concern: "I don't want that needle. I don't want you to use the drill."
The way we deal with it in my office is, we build up the child's confidence. If the child is scared of the needle, for example, he would come in and I would say: "Today we are going to be looking at your teeth. Today we are going to be doing dental X-rays," and he says, "No needle," and one of the things we do is reassure him, "No needle." But after two or three appointments, where he has built up enough trust in us, then we can usually go ahead and do a slight injection. Some children are paralysed by fear and they need additional help. We will use medication to calm them down or nitrous oxide or laughing gas to get them to relax, which takes away the pain of the injection so that after they have had one injection and see that it is not all that bad, most of the kids become excellent patients.
Mr Wessenger: Is there any age that children start, in your experience, treating the matter as adults?
Dr Maltz: I would say approximately the age of 12, somewhere in there. They really seem to understand what is happening and they can voice their fears and objections in a more concrete manner, whereas when a six-year-old comes in it is just a generalized fear.
Mr Wessenger: Thank you very much.
Dr Maltz: I have one other thing, if you do not mind. According to the bill, if you call an advocate, you cannot call him back for six months. That is perfect for dental recalls; we will be seeing them every six months.
Ms Carter: I think we do have to distinguish here between what you might call the kicking and screaming of a frightened kid and somebody, as you say, probably older than 12 who might begin to have a rational reason why they would not want treatment. I am just wondering how much these bills are going to change that situation. I think I would like counsel to comment on that, whether we are going to make that any more difficult for you under these bills.
Ms Auksi: I think we should say right away that the intent of the demonstrating a wish to make a treatment decision is that really you would be talking about someone who conceivably may have the capacity to make a treatment decision for themselves as opposed to someone who is simply, as you are saying, expressing some generalized fear or anticipation of what may happen. I think it is recognized that if there is a need to clarify that in some way, it may be possible with drafting.
Dr Maltz: If I might comment about the advocate: I feel that would limit my power as a dentist -- from a psychological point of view, not from a power point of view. What I mean to say is, if you are going in to have some surgery done, you have confidence that your surgeon is the best. You do not want somebody to come in and say: "I've got to tell him what to do here. Just wait a minute." Or, "Hey, wait. This is something that he doesn't know anything about. Let me just" -- somebody else is coming in and interfering. Children understand the situation very well.
We have lots of children who come into our office who would not even open their mouths or would not walk in the door in a general office. They know when they are coming into our office that it is a special situation. They just seem to understand it. What will happen is they will understand what is happening, that we are there for their best interests, and they react totally differently. But if we have to get an advocate or somebody to come in, I feel that would take psychologically away from my power and would make it more difficult to deal with that child.
Ms Carter: It seems to me there are valid decisions to be made. For example, it took me a long time to realize that I would much rather not have a needle when I am having fillings; I would rather have the drill than have the frozen jaw. and I keep X-rays to a minimum and that kind of thing. So I think there are valid decisions there that one individual might make differently from another. Obviously it is hard to say at what age that begins.
Dr Maltz: Let's just take the haemophiliac child and expand on that. That sounds maybe innocuous where a 12-year old says, "I don't like the fluoride treatment and I'm not going to have it." The thing is, you would be surprised right now at how many kids do not like fluoride. It is worse than injections when we were kids. If this child does not get fluoride treatment he can get a lot of decay, and if he has a lot of decay, he will have to either be hospitalized or have the work done -- by the way, haemophiliacs sometimes have the work done without any needles because of the danger of bleeding. So the child will actually suffer more. He may understand what is happening, but he may be paralysed by his fear.
Ms Carter: Thank you.
Mr Sterling: Could I just ask one question, perhaps of Mr Malkowski. Can we assure this practitioner that there are going to be advocates that are going to be available to his office every day and to every office similar to his? They are going to need an advocate every day, according to this legislation. Are we going to spend all our 150 advocates in the dentists' offices across this province? Can we assure him that the advocates are going to be there?
Mr Malkowski: I would like to refer this to Paul Wessenger, please, the parliamentary assistant to the Minister of Health.
Mr Wessenger: In my opinion, the obvious intent of the legislation is not to have an advocate called in for children who are incapable of making a decision with respect to the health matter. That is the obvious intent of the legislation. There may be some clarification needed; certainly that is something that will be looked at. I would anticipate it would be very rare you are going to need an advocate in a dentist's office. That would be certainly the intent that we would want to see drafted in the legislation.
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Mr Sterling: In fairness to the presenter, then, in what circumstances will he need an advocate?
Mr Wessenger: I think it would be a rare occasion, with a child who was of a sufficient age and who had some communication problem -- there may be some rare examples, and I will ask our advisers.
Ms Auksi: Just to follow up on the comment I made earlier, there is a presumption of incapacity in children under 16. The feeling, then, is that there certainly are people -- and the public health people have told us in droves -- especially 12 and up and so on, who are evolving the capacity to make their own treatment decisions. The common law suggests that the principle is that if you have the mental capacity to make your own decision, then it is your right to do so.
The intent of what is in Bill 109 is to say that if you are demonstrating a wish to make that decision, the practitioner would have to assess whether you are capable or not. If you are capable of making that treatment decision -- not all decisions of whatever kind, or even all treatment decisions, but that treatment decision -- then the practitioner can take your consent.
For example, if you had a 13-year-old and the parent was not around but that 13-year-old was quite capable of consenting to the procedure himself, then that 13-year-old's consent would be sufficient. If the person has demonstrated the wish to make his own treatment decision and you assess and find that person incapable, then that is the point at which the act triggers certain rights protections, because he may want to object to that finding of incapacity because he has said he wants to make the decision. You have said, "You're not capable to make that decision." If they want to dispute that finding, that would be their right under this act.
As I said before, I think it is fair to say that the intent was not to pull into that provision four-year-olds who are just afraid and probably have no notion of consent at all. That is not the intent.
Dr Maltz: I understand that, but I have a problem. Let's just say an eight-year-old comes in who has to have a tooth fixed, or let's just say it is an emergency; he has a toothache. I say, "I want to fix that tooth." He says, "No, I don't want it fixed." I say, "It's going to hurt again tonight; it's not hurting now." He says, "I don't care; I don't want it fixed." That is where the problem comes in. He understands the implications, but he does not want to act on it.
Ms Auksi: But does that person really understand the risks and benefits and appreciate the consequences of refusing consent in the sense that you would really need to, in order to give an informed consent or to refuse?
Dr Maltz: But it is not really clear; that is my problem.
Ms Auksi: Okay. I think the question that really lingers here is at what point might someone who is young maybe have some right to assert that right, and where it might be so obvious that they would not be.
Dr Maltz: I think basically, as a generalization, around the age of 12. Even if a 12-year-old came into the office right now and wanted to have something done, I would still get consent of the parent if it was anything at all invasive. In other words, if somebody came in and said, "Listen, my tooth has been bothering me; can you have a look at this?" that is fine. If I require to do any treatment or give the child any medication, I would have to get consent of either an adult, a guardian or an advocate.
The problem I see from a dental point of view --
Ms Auksi: I am sorry, an advocate does not --
Dr Maltz: No, no, no. I am just saying the problem, as I see it right now, is that things are not clear. There are going to be right now some 12-year-olds, and there may even be some 10-year-olds -- the problem, as I see it, is the definition of understanding you can be capable as to one act and incapable as to another act. I think children of even 10 years old understand the implications of fillings, but they may not want to act on it. They do not want the short-term pain for the long-term gain; that is the decision they seem to be making.
Ms Auksi: I think that brings up the issue, too, of the assessment of capacity. It is recognized that when you are talking of the maturational process, people will say that in young people it is not just whether they have the cognitive ability per se, but whether they have reached a maturational level that would enable them to look ahead.
Dr Maltz: I think that has to be clarified.
Mr Sterling: We are sending him away, and under the present act, if an eight-year-old comes in with his mother and Johnny says no but mom says yes, what does the dentist do? The dentist, under the present legislation, has to call in an advocate, if he can find one. It costs mom more money, because she has to go through this thing twice. What is the answer? Is the government saying that somebody under a certain age is going to be deemed within the control of the parent alone and the parent shall make the decision, or not? That is the answer we need. What is your position, Mr Wessenger?
Mr Wessenger: I think we want to make it clear to people that --
Mr Sterling: Do make it clear, please.
Mr Wessenger: I think that is what we intend to do after these hearings have taken place.
Mr Sterling: No, no, it is your legislation, Mr Wessenger. You have an obligation to make it clear to the public what your position is.
Mr Winninger: Why do you not let him reply, for starters?
Mr Sterling: Because I know what his reply is going to be.
Mr Wessenger: All the people we are listening to, people making these presentations -- that is the purpose of these proceedings: to hear the areas of concern with respect to legislation, then to take all these areas of concern and to make sure the legislation, as it is finally brought forward, takes account of these concerns. I think that is the whole purpose. We are here today to hear from you, and I appreciate your coming and bringing us your concerns, because we certainly do not want to have the situation arising which you mentioned.
Dr Maltz: I understand that.
The Chair: Dr Maltz, on behalf of the committee, I would like to thank you for taking the time out this morning to give us your presentation.
Dr Maltz: Thank you very much.
ONTARIO PSYCHIATRIC SURVIVORS ALLIANCE - METRO TORONTO CHAPTER
The Chair: I would like to call forward the Ontario Psychiatric Survivors Alliance for Metro. Good morning. Could you please identify yourself for the record and then proceed.
Ms Benmosche': Good morning. My name is Shoshannah Benmosche'. I am a member of the Metro Toronto chapter of the Ontario Psychiatric Survivors Alliance.
The Ontario Psychiatric Survivors Alliance is a self-help, non-profit organization dedicated to the empowerment, representation and wellbeing of all psychiatric survivors residing in Ontario. We advocate on behalf of the interests of psychiatric survivors through the development of local groups and individuals.
OPSA promotes greater survivor participation in managing the mental health system, as well as building alternative resources to fill those needs defined by members. We believe that psychiatric survivors are entitled to all the rights and obligations of citizenship, including those of choice, freedom, autonomy and access to alternatives. We will endeavour to advocate for these rights.
OPSA shall cooperate with groups having a similar aim and purpose, to work towards the achievement of our common goals. OPSA will always be highly responsive and responsible to its members.
We are in support of the submissions to the standing committee from the Ontario Advocacy Coalition and from the Ottawa chapter of the Ontario Psychiatric Survivors Alliance. We are also in support of the submissions from Irit Shimrat and Randy Pritchard of the provincial office of OPSA. We are grateful to Don Weitz for his valuable input to this committee. We thank the committee for this opportunity to present our views.
We have some concerns about how the Advocacy Commission will be formed and the criteria that should be applied in selecting commission members. We also have concerns about the selection process for advocates. Our important considerations are personal suitability, experience and training. Recognition should be made that care-giving professionals, such as social workers and adult protection service workers, have little or no training in advocacy work, though some of them have become proficient in this area, usually in the face of opposition from the majority of their peers and superiors who favour more patronizing approaches.
It almost goes without saying that physicians or psychiatrists, as a group, have no experience in the area of advocacy and no training or expertise in the area of assessing competence. A legal test such as the Weisstub criteria should be universally applied by trained assessors. Those professionals who have engaged in advocacy work with their clients likely did so unofficially and beyond their mandate.
Traditionally, service providers who engage in advocacy have been in a minority and have been marginalized by their colleagues. They are often seen as threatening by the majority of professionals, who of course would like to believe the system in which they work is working and has no need for advocates. There exist professional care givers with appropriate experience and a client-centred orientation who through specialized training would make excellent advocates. It is far more likely, however, that consumer survivor groups with a specific mandate to advocate for their constituent community could provide or recommend a significant and important number of very good candidates. Many of them have the equivalent of doctoral degrees in life experience from the university of adversity.
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During the hearings on the legislation, professional groups have said, "Don't forget, we are advocates too." The professional community, in making such assertions, reveals its own misunderstandings about the need for advocates as well as the role of advocates. There are also many professionals who want to be advocates and would like to think of themselves as such. It is natural for professionals to say: "You don't have to worry about us. We're there to act in the patient's or client's best interests." The best-interests school of thought has contributed enormously to the types of abuse and neglect that have made advocacy legislation necessary to protect the rights of vulnerable people, people who are often made more vulnerable by professionals, friends or family members acting in the person's best interests. This is not to devalue the efforts of relatives and professionals who endeavour to support the vulnerable person's own expressed wishes and needs.
OPSA Metro recognizes the need for and the value of peer advocacy and self-advocacy. We know our power to advocate for ourselves is situationally determined. There is a power inequity between individuals and institutions. Access to being heard, to choice, to legal services, etc, is barred to those who do not know what is available. In the absence of options there can be no choice.
What a client needs is frequently in conflict with the services an institution is offering or is prepared to offer. I sat in at the offices of the Durham Board of Education before it would admit the services it had to offer were inappropriate to my gifted and dyslexic child's needs. I was required to prove the services were not available in order that they could be purchased from a neighbouring school board.
A Ministry of Health official recently advised, in a meeting a couple of weeks ago, that over 70% of the OHIP billings by psychiatrists is for psychotherapy. Surveys of psychiatric survivors indicate most patients would be very pleased if they could find a psychiatrist who would actively listen to them for at least an hour per week and collaboratively address their issues, rather than mystify and medicalize them and pass out debilitating and addictive drugs to make the patient manageable. If the patient bows to this neglect or abuse, he or she quickly gains the smiling approval of attending professionals and often of families who have a difficult time dealing with emotional distress and find disabling drugs preferable.
An honest survey of psychiatrists would reveal that most of them do not believe in the efficacy of psychotherapy, let alone practise it. If the moneys from these fraudulent OHIP billings were redirected, they would probably pay for an advocacy system several times over.
Family members who are in conflict with a vulnerable service recipient often like to present themselves as advocates. There is often a conflict of interest. Here too, a best-interests approach is often applied. It is natural that in such a situation the family member may see the intervention of an advocate as threatening or intrusive. In the psychiatric community, many consumer survivors have experienced a de facto collusion between professionals and family members to do what is best for the patient without consulting the patient in a way that is non-coercive and invites openness and free expression.
The patient often feels constrained by desires to make the family member happy and to be a good patient, often to his own detriment and harm. A skilful and client-oriented advocate will have the ability to win and deserve the trust of the patient in these situations; not an easy task. He or she must be able to elicit from the service recipient what they really want and need, and empower them to access these needs and desires.
Fifteen minutes is not long enough to scold you into remembering the evolution of this legislation, that it was sown by the current opposition, developed by it when the NDP was in opposition and trying to be the conscience of Ontario. Now it is the opposition's turn and our conscience is reduced to bucks. Is it not time the buck stopped here?
There is a scriptural adage to the effect that if you are responsible for what you have, more will be given you; if you are not, it will be taken away. The funds we have at our disposal will always be limited. Whatever the amounts are, we have to make responsible decisions. It is not responsible to continue to fund things that impact negatively on the community purportedly being served. The need for instructed, non-instructed and systemic advocacy is uncontested by disempowered persons. Power inequities will always exist and need to be mitigated in a healthy, compassionate and just society.
We are able to establish minimum standards for the treatment of animals; we remove those that are mistreated from their owners. There are standards for prisoners, even prisoners of war held captive by hated enemies. These standards prescribe the need for light, air, exercise, potable water, nourishment and medical attention. We recognize abuses, torture, starvation, dehydration, physical and psychological cruelty. Are we unable to recognize and require by regulation the right of access to minimum standards of wellbeing for all persons? At the same time, it is important not to impose unwanted standards and values on individuals who, for instance, prefer privacy to clean floors.
Many arenas of power inequity mitigate against our needs being perceived and met. Our warm bodies are fodder for many powerful mills. We are coerced and deliberately misinformed by the very agents required by law to inform us. Disabled persons, especially children, are vulnerable to chemical and surgical experimentation deliberately disguised as therapeutic procedure on consent forms. The occurrence of informed consent is virtually non-existent in Ontario's mental health system, despite legislation that has been on the books for many years. I would suggest a lot of advocacy is required to implement existing law and see if it can be made to work for the people it purports to protect.
We need advocacy urgently and would like to see the supporting legislation improved prior to the implementation of these acts. Advocacy should provide an ongoing mechanism for access, accountability and correction. Advocacy for those who are unable to advocate for themselves effectively without assistance is the single most essential component of an ongoing mechanism to ensure the administration of a recognizable justice, the meeting of needs, the acquisition of rights and the healing of society.
I am concerned about the pricetag for advocacy being a loss of long-term rights in exchange for the meeting of immediate needs. For example, the burden of proof that I am human and have the right to determine my own self-interest, make informed choices and act upon my own hierarchy of values should not shift to anyone else as soon as I explore medical options and become classed as a patient. Due process to determine my incompetence must assure that the burden of proof rests with the legal, not medical, assessment of incompetence. The only exceptions intended by the proposed legislation are for saving life and limb where emergency medical intervention is required to do so and the patient is unconscious. The need for an advocacy system arises from a belief among professionals that they know better than we ourselves what our needs are and what our values ought to be. The shape of the administration of advocacy will also have to be accountable to the community it is constructed to serve.
Right now, all of us sitting at this table, all of us sitting around the room, are and have been involved in a process together. Many factors in this process have presented us all with obstacles and obstructions in the way of our achieving what we have set out to do. Empowerment is what this process is all about. Empowerment is what this legislation is all about. Many are threatened when we discuss power. The knee-jerk reaction of many professionals, many institutions and even many family members is to ensure that empowering vulnerable people will not diminish the power of some of us, who have found access to it easier than many of us.
We have witnessed the defensive posture of both families and professionals in response to this legislation, even the esteemed College of Physicians and Surgeons of Ontario. It is disheartening but not surprising to many psychiatric survivors that the college has not taken the initiative or the opportunity to monitor and regulate that specialty within its sphere that has caused the medical profession more public embarrassment than any other discipline: the field of psychiatry.
Instead, the college has maintained the silence of the old boys' club. Instead, the college presents us with nightmarish scenarios in which doctors are not able to diagnose and treat children who may be afflicted with meningitis because they are restrained by the red tape of a bureaucracy by which they feel accused. It is difficult for a reasonable person to imagine that any physician could possibly believe the intent of advocacy legislation is to allow children to die. This not-so-veiled threat to withdraw essential services if the legislation is passed represents an obfuscation of the medical profession's true fear that questionable practices will come under the scrutiny of someone other than themselves.
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Most of us who have survived the widespread systemic abuse and neglect of the psychiatric system are able to recognize the good intentions of many health care professionals. Abuse and neglect often come from well-meaning but misguided caring people who have had years of training in the practices, theories and procedures from which abuse freely flows.
Mental health professionals are trained to treat criticism from patients as symptomatic of imagined illnesses. They have carefully guarded against learning anything from their personal experiences that might challenge cherished theories that are presented as fact. They have learned to treat individuals as if they were unaffected by environmental factors. In their efforts to be "real" doctors, they have reduced all emotional distress to chemical imbalances for which there are no scientific tests. They have become victims of their own professional indoctrination. Their usefulness to us is largely confined to signing forms we need to qualify for housing, vocational rehabilitation services, financial assistance and other government-funded programs and services. In order to access these services, we must often subject ourselves to 10-minute diagnoses, invalidation of our feelings, experiences and selves, long-term addiction and lifetime prescriptions of drugs that are more disabling than our so-called illnesses.
The efficacy of medication is usually judged by how well we are observed to behave by professionals and family members. How we behave becomes more important than how we feel, and there is great pressure on us to say we feel fine, if only to avoid further abuse. It is difficult to misbehave when given drugs that make it extremely difficult to process information and which make it difficult to move. Outsiders, even psychiatric professionals, often choose to see drug effects as further symptoms of illness. There are so many diagnoses in the DSM-3 that it is not surprising many of us have several labels assigned by as many psychiatrists.
We recognize that even professional care givers are subject to the abuses of a mental health system that is largely controlled by drug companies, and by the damaging effect of pseudo-scientific arguments aimed at legitimizing the treatment of non-medical problems by medical means. The psychiatric disciplines have fought hard to gain the legitimate respect of other medical specialties, largely by playing doctor. They have been accepted and have been offered unquestioning shelter by the College of Physicians and Surgeons, despite offering treatments that are extremely harmful, despite arrogant refusal in the face of the law to seek informed consent, especially when offering treatment that presents consequences that are dangerous to their patients.
We are aware that psychiatric residents in training are systematically dumped from programs when they refuse to perform procedures they have determined to be unhelpful, dangerous, abusive and/or neglectful. Some have referred to these practices as initiation rites. Had the College of Physicians and Surgeons taken the responsibility for the abuse that has passed for so long as care and treatment, we would have little need for advocacy legislation. To the degree the college accepts this responsibility in the future, it will have fewer complaints from patients and fewer advocate interventions. Where self-regulation works, as seldom as this is the case, there is little or no need for advocacy.
This committee has heard presentations from desperate relatives who spoke as individuals but some of whom are members of an organization which calls itself Friends of Schizophrenics, an organization established to protect the rights of psychiatrists to impose treatment against the will of patients who exhibit such symptoms as imagining that electroshock and drugs which paralyse their central nervous systems and thought processes are not good for them and make them feel terrible.
Friends of Schizophrenics of course receives a great deal of support from drug companies and psychiatrists who assure family members that resisting treatment is symptomatic of the illness with which their loved one is afflicted. Many of the personal stories of family members are quite sad and touching. It is very difficult to live with and care for a relative who is going through emotional hell. Family members are vulnerable to professionals who baffle them with psychobabble and promote what many survivors of such dangerous treatment recognize as institutional substance abuse.
For every horror story of someone committing suicide because they refused medication, there are hundreds of good patients who always did what the doctor said to do, whose conditions worsened, who experienced the soul-murdering effects of neuroleptic drugs, who lost hope when drug-pushing psychiatry, the only game in town, seemed to have nothing to offer, who slipped away and died in despair, still good patients, taking their meds for the last time.
Many survivors have experienced times when we have been in need of a safe place to go, often for our own protection. The help we ask for has not been the help we get. The institutions established by our society have proven not to be safe places. When we need to be listened to, we are shut up. When we arrive with a presenting problem, we are patronized, labelled and given the message that our perceived problems are non-existent or less important than those the professionals would like to treat.
We would like to have the choice to refuse treatment we find inappropriate without being discharged for refusing treatment. Many, though not all of us, would like some help in sorting out the problems we face without subjecting ourselves to dangerous drugs. There is a legitimate place for psychotherapy and a need for it to be covered by OHIP. Psychotherapy is available from psychologists, but this is not covered by OHIP. Many of us could have our needs met through psychosocial counselling, which is usually only available to patients who are willing to subject themselves to more intrusive and disabling treatments at the same time. We need more choices.
"Empowerment" has become a nice word. In becoming a nice word, it has its meaning in a paternalistic system. It has not, however, lost its meaning for those of us who have experienced the nature of power from the vantage point of powerlessness. Like health, we hope to regain it. Those of us who have lived throughout powerlessness, who have learned to advocate for ourselves against tremendous odds, are more than just stakeholders in a system.
We and our needs are the raison d'être for the system. If it continues to fail us, if we allow it to fail us, everybody loses. We are the most important part of the equation, not just in the development of this legislation but finally in its implementation. We affirm our right to be part of the solution. Without us there is no solution.
Advocacy cannot exist without empowerment. It is the exclusive role of the powerless to define empowerment. It cannot be defined for us by experts of any description. Empowerment inflicted is empowerment lost. We must ensure the continued involvement of those this legislation is designed to protect. They must constitute the Advocacy Commission and must be actively involved in the shaping of policies and procedures which will govern the implementation of the Advocacy Act. Many representatives of consumer/survivor groups in the labelled and disabled communities have years of experience in advocacy and should be hired as advocates.
We are now at a stage where precise wording of a bill is being discussed and considered. We are in the midst of the trees as we examine each of them. We are now sharing in our very difficult struggle to maintain our view of the forest. We stand on the threshold, on the brink of the final outcome which will determine whether our involvement, our taking ownership of the crying need for a more caring and responsive social environment, whether the struggle of disempowered people acting in a collaborative effort with government and institutions to take what is ours, to get our share, will contribute to our ultimate empowerment, further encouraging us to own our lives, to take our rightful place in our society.
The people OPSA represents, survivors of an inadequate and disempowering mental health system, have long had faith in this government's intention to do what a former NDP MPP described as "doing the right thing right." This faith has been challenged by the time and effort we have had to invest in this process, by the hopes we have invested and the personal risks we take just to keep the government on track. One of our members, feeling the frustration shared by many of us in regard to helping to give shape and life to this legislation, made an interesting observation, "If the government is unable to do the right thing right, can't at least do the left thing right?"
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And right now, at these hearings, we have come to the crunches, the final hour for you to decide whether this administration will properly use the power the electorate gave it to do something good that may outlive this government. We need advocacy. The pricetag in dollars is not the main consideration here.
It comes down to supporting the status quo, appeasing those who have the power now, or doing what is the true function of government in a democratic society, of redistributing the power pot to ensure inclusion, access and participation by all members of society to the extent they want to participate. Right now we are not consumers; we are a commodity, frequently a liability and a frustration to people who feel the need to control us, to shut us up and shut us out. The cost in human waste is enormous. We are kept alive without hope. The human rights commissions were swamped with claims from disabled persons who were experiencing the natural response of our society to vulnerable persons: further victimization of victims. Human rights officers were not trained advocates and they were not experiential peers of the labelled and disabled, and they could not identify with their needs to begin to meet them.
I have experience both as a survivor and as a parent of a vulnerable person. My story is not typical, only because I am an escapee. My caring family could not cope with me when my hormones and my angers exploded in my early teens. They were dismayed by my politics. They were disgusted by my taste in clothing, friends, music, philosophies, my attraction to various religious speculations on the nature of reality and my uncompromising rejection of their sexist, paternalistic religion and my intolerance of their hypocrisies. They did not like me. I embarrassed them. The clincher was that they were threatened by my recollections of sexual abuse. My mother would not admit that it could have happened. Her primary concern was my father's health. For their own protection, I was psychiatrized and they were supported in their preferred belief that it was a demented fantasy of mine. The first validation of my experiences came from my sister many years later. This validation was more therapeutic than anything I experienced in the mental health system. Somehow, even without validation, I managed to reject the assertions of the psychiatrists that my memories were fabrications, symptomatic of illness. I have forgiven my parents for being normal, inadequate as parents and lacking courage. My father was not courageous enough to admit his weaknesses and my mother was powerless to protect me from his abuse.
In the mid-1950s, adults were more likely to be prescribed drugs and electroconvulsive therapy and insulin shock treatment than were children. This is not the situation today, where increasingly younger children are the subject of experimentation. I was lucky. My age protected me from the kinds of abuse that are euphemized as "care" and "treatment" in Ontario today. I learned about humiliation, coercion, and I survived the system. Some of my friends were turned into vegetables and one of them died as a result of the "therapeutic treatment" he received at the same hospital. He was only a few months older than I but he was on an adult ward. Excuse me.
Feelings, experiences, memories and ultimately people are made waste, negated and invalidated in a process that to me constitutes the most horrific abuse imaginable. It is difficult for most people who have not experienced Ontario's mental health system to accept and believe that abuse and neglect are not the exception but the rule. This will not stop the ever-growing numbers of survivors who insist on telling the truth regardless of how uncomfortable it makes well-meaning people who wear blinders.
The treatment of my friends in 1992 Toronto hospitals is worse than the treatment I received. Today, children are more likely to become subjects of experiments and treated to cruel and unusual injustices and indignities. This legislation must also protect children. Physically or sexually abused women, through the magic of psychiatry, are diagnosed with chemical imbalances which somehow explain their being victims. Chemical imbalances can be determined by psychiatrists via five-minute conversations -- no blood tests. Normal people are unable to achieve this. Some sceptics think it is a scam but most people believe the psychiatrists. We all need someone to believe in.
Disabled and labelled people, survivors, acting collectively, are beginning to believe in themselves. We are discovering that learning to be assertive is therapeutic; that getting what we need and want in our lives, by reclaiming what is ours, we contribute to our own healing. We ask -- no, we demand that this government honour its long-standing commitment to the underdog by strengthening and passing this legislation to provide advocacy services for all vulnerable people in Ontario. Thank you.
I would like to introduce you to Marianne Weberschar. She is a member of Metro OPSA.
The Chair: Thank you. The presentation took a half-hour, but I will allow very brief questioning if anyone would like to.
Ms Benmosche': I am sorry.
The Chair: Mr Wilson?
Mr Wilson: It was pretty thorough, Mr Chair.
The Chair: Mrs Carter, very briefly.
Ms Carter: I would like to thank you for a very powerful and moving presentation. I just want to underline once more that the idea behind the advocates that we are proposing in this bill is that they be listeners, that they go to vulnerable people, hear what they have to say. They are not in any way decision-makers. Their job is to act on what they have been told that person wants.
I also draw your attention to section 15 of Bill 74, which lists the categories of people who are going to be on the appointments advisory committee. The emphasis is definitely on getting people who have been there. It is not, obviously, just psychiatric providers. People with other kinds of vulnerability are going to be very heavily represented on that committee. We are not looking at an army of very highly professionalized people going around and telling people what is good for them. We are doing quite the opposite.
Having said that, I would like to ask you in what ways the bill could be strengthened and improved, because you seem to be going along with it but saying that perhaps there is not enough there, perhaps we could do more.
Ms Benmosche': I do not see that there is a mandate for client-centredness there. The only way we can protect that is if the commission is primarily disabled persons, peers of the people they represent.
Ms Carter: That is what is said.
Ms Benmosche': It says that, but there is not any requirement that elected persons, who are elected by constituent groups to represent them, will necessarily be appointed. I am not so concerned with the advocacy legislation as it is presented. I am concerned about the order of default in substitute decision-making. I am concerned with the intent not being manifest in the law about the protection of doctors to do things. Unfortunately there will not be a problem with advocates. Advocates are listeners; they are not decision-makers.
Ms Carter: But they also have the power to go out and change the system. That is the other aspect of what they will do.
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Ms Benmosche': Where you have laws that are inappropriate they have to be redressed. Unfortunately, governments seem to act very quickly, when decisions are made, to mitigate against the intent of those decisions. We had a decision in the Swain case, and as far as I know we still do not have anything approximating compliance with the charter for people who do not choose to be tried, who are incapable. They cannot be acquitted; under what has been proposed, they could not be acquitted of a crime. They could only be in some sort of limbo situation.
Mr Malkowski: I want to thank you for your presentation. I think it had a very big impact, and it is time for us to listen to those consumers who have experienced it. They can be a great resource for us. I just want to know if you are aware that the commission will be receiving nominations from various organization such as yours, the survivors alliance. They will be submitting the names to the commission. I wonder if you feel that is enough as far as consumer control goes, or if you have any other recommendations to improve that part of the legislation.
Ms Benmosche': No, I am quite satisfied. I just want to reiterate the importance of keeping it client-centred and not use representatives from organizations that were not composed of their disabled constituency. There is nobody who can better represent somebody than themselves, even if they need an interpreter or if they need someone sensitive to their issues to verbalize it for them when they are not able to be articulate.
That does not mean they are not able to communicate. They are able to communicate in a trusted situation what their desires are, but they cannot always represent themselves well. They are also in very vulnerable situations. The more vulnerable people are, the more dependent they are on others, the more they are constrained from asking for things that they do not think they are going to be able to get or that is going to bring the wrath of their providers down on them. They are needy. They need to be protected.
The Chair: I want like to thank you on behalf of the committee for coming forward and giving your presentation.
MEMORIAL UNIVERSITY OF NEWFOUNDLAND
The Chair: I would like to call forward our next presenter, Professor Morris Saldov. Please identify yourself for the record and then proceed.
Dr Saldov: My name is Morris Saldov, professor of social policy and community development at Memorial University of Newfoundland. My goal here today is to speak first on a personal level regarding the requirements of the ethnic elderly, then to go on to discuss some research that I did in Toronto during my sabbatical year on the needs of ethnic elderly in health care institution, and then go on to make comments, hopefully constructive suggestions, regarding the legislation.
"Ethnic elderly" means those who are over 65 and speak little or no English. I want to start with a personal story. My mother-in-law is a Chinese elderly, 85 years old. Her name is Popo, which is Chinese for "grandmother." She has raised four adopted children, one of whom is my wife. She is blind, she has a hip replacement and she speaks no English. Popo deserves the best treatment that our health care system can offer. What I am about to relate is a true story.
About a year ago, Popo developed pneumonia while I was her primary care giver during my sabbatical. At that time my wife and daughter were in Indonesia, and I made the decision to admit her to a local hospital which boasted a transcultural health care program. It is on the periphery of Chinatown in Toronto. She was admitted through the emergency ward of the hospital. For the period of about three hours, while she was going through various investigative procedures, no interpreter was available. Therefore, I was the only person able, in a limited way, to convey to her some of the meaning of what was going on, describe some of the procedures that were taken.
First of all the doctor appeared, lifted her blouse and put a cold object, which is a stethoscope, on her back. I do not know the technical term for "stethoscope" in Chinese and I am not sure that many Chinese know what that is, but imagine that you are blind and that you do not speak a word of English and someone comes in and lifts up your blouse and puts something cold on your back without telling you what that is.
The next thing, someone comes in and holds your arm and sticks a needle in it, without telling you what he or she is doing, because he needs a blood sample. The next thing you know you are on a cart off to somewhere, you do not know where, and you are put with your chest against a very cold object, again, and an X-ray is taken. You have no one explaining to you what is going on.
You need treatment, so the immediate thing is to get chemicals into your body to correct some of the dehydration. An intravenous is inserted into your arm, again with no explanation of what is going on. There is an inordinate amount of screaming that is going on during the course of this and an awful lot of anguish on my part, and of course on Popo's part.
Popo does not understand what IV is, and certainly she did not understand when it was inserted without any explanation. She felt this cold object on her arm that was causing her some pain and proceeded several times to remove it. Of course then the nurse had to come in and reinsert it several times. I had to walk out at one point, I was so anguished by the whole procedure.
This is not the only time that Popo has been admitted to hospital. When she broke her hip more than a year and a half ago, she spent six months in hospital. My wife, my daughter and I spent almost 24 hours a day on rotating shifts to protect her from the hospital. There were times when nurses would come in to perform an enema when she did not need one and there was no one there to explain. If we had not been there, she would have had an enema performed on her without anyone explaining what was about to occur. Just imagine that.
At another time they did not understand when she called for the bedpan or when she called to go to the washroom, so what did they do? They put diapers on her. You come in, you pull the person's pants down, you start manipulating her underparts and she ends up with a diaper on. Imagine if you had that done to you when you were blind and no one had told you what they were doing. Presumably you would feel you were being assaulted. That is what Popo felt and she screamed. This would occur repeatedly with no one to explain what was going on.
If you are a Chinese elderly and you come from mainland China, wetness has a particular significance to you because flooding in China is one of the most serious disasters that has occurred. Popo is very sensitive to wetness. It reminds her of flooding. She has had her house flooded many times and many people have died in floods, so when she was wet in a diaper the significance of that was beyond what a lot of people might have imagined.
Popo, after spending several months in the hospital, deteriorated significantly, and it took us the best part of the year to restore what I would call her mental status, her ability to respond to people. She withdrew even when we were there a lot of the time. We could not be there all the time, and when we were not, there were things that happened to her similar to what I have just described.
These experiences led me to join forces with a colleague, a Dr Peter Chow, who was also at Memorial University at the time and who has since moved to the University of Lethbridge. We both agreed that this was an area that required some investigation. We needed to have a sense of the proportion of this problem in the hospitals, nursing homes and homes for the aged in Toronto. We undertook to do a study, which was conducted in December 1990.
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I want to share with you now the results of that study. A majority of the respondents, 77%, were from hospitals, with 13% coming from homes for the aged and the remainder from nursing homes. These were health care workers who were asked about the extent of the problem and the number of ethnic elderly under their care and what types of services they had provided in order to help overcome the communication barriers between ethnic elderly and their care providers.
In general, acute-care clients received more interpreter services than chronic-care patients, from staff, family members, friends and other sources. About 50% of all the ethnic elderly had few non-critical problems caused by their lack of ability to speak English; 20% had some problems that if unresolved they could become critical, and for 10% of the ethnic elderly communication was critical to their health care. A majority of the health care settings, 83%, reported having some type of interpreter service, while 9% said that none was available.
Many agencies found other methods to provide linguistic and cultural services, including extending visiting hours for family, friends and other visitors, 83% of the sample; reliance on free interpreter services from community-based ethnic agencies was also present, 21%; volunteer interpreters, 39% of the sample; matching ethnic staff assignments to ethnic elderly from the same background, 44%; matching ethnic patients with similar ethnic backgrounds at least one of whom speaks English, 60%; calling on ethnic staff or patients for interpreter services from other wards or rooms when needed, 91%; hiring staff to reflect the various linguistic backgrounds of residents and/or patients, 35%; relying on family members to provide interpreter services to other ethnic elderly, 58%, and using technolo<P9>gies like diagrams, photographs or other means for com<P255>munication, 71%. Only 12% reported that training was available for developing ethnic sensitivity in health care delivery, while 18% indicated that staff workshops were being planned. Few agencies, 14%, had a separate budget for interpreter services.
What we see here is a picture of a health care system that recognizes that there is a problem in communicating with ethnic elderly but where funding is very insignificantly provided for interpreter services -- linguistic and cultural -- to the tune of 14%. The recognition that the problem exists is reflected in the fact that most of these health care agencies have provided ad hoc interpreter services, relied on family members, staff or perhaps kitchen staff or relied on others -- other relatives visiting or church members or other volunteers in the community. So what you get is a patchwork of ad hockery in dealing with what is a very significant and serious problem.
In 1987, the Social Planning Council of Metropolitan Toronto did a study on access to health care and social services in Ontario. What they found was that where there were communication barriers, there were some serious restrictions and limitations on the access to health care, which resulted in numerous inefficiencies, numerous examples of ineffectiveness and certainly problems with equity in the delivery of health care. The implications of our findings and of the findings of the social planning council, the many family members and the clients themselves, the ethnic elderly, for your legislation are specific to the issue in question of ensuring that there is no communication barrier for those clients who are in need of advocacy and services in the health care system.
But specifically, I wish to refer to Bill 74, clauses 7(1)(b) and 7(1)(f). Clause 7(1)(f) says: "ensure that advocacy services are provided in a manner that takes into account the religion, culture and traditions of vulnerable persons." I would suggest that you add "language" following "culture" to ensure that language is not a barrier in the provision of advocacy services. There is nothing in here that would guarantee that a person would be provided with interpreter services in the delivery of advocacy.
Second, subsection 9(1) on the next page says, "No proceeding for damages shall be instituted against a member of the commission or an advocate or other person who works for the commission or in a community program, whether on a paid or voluntary basis, for any act done in good faith" -- I underline that -- "in the execution or intended execution of the person's duty or for any alleged neglect or default in the execution in good faith of the person's duty."
This reminds me of the provisions in the medical profession today that do not provide for malpractice suits unless malice can be shown, which is different from the American system. I guess what this allows for is neglect to occur, not only in the health care system but on the part of advocacy services, as long as the intent was good.
I would suggest that if we look at some of the mission statements of hospitals today, Mount Sinai Hospital in particular, there is a well-developed mission statement which says that we shall treat everyone equally, to the best of our available resources. At the same time they say we must be sensitive to cultural differences. There is an apparent contradiction there. You cannot treat people who are not equal in the same manner and expect that the outcomes will be equal. So one particular philosophy of treatment, that which requires equality, conflicts with a more affirmative action type of approach or a positive discrimination for ways of arriving at more equality in the outcome.
My concern is that "in good faith" may not be sufficient when we have statements of mission which do not respond adequately to the needs of particularly vulnerable groups like the ethnic elderly. I am not sure how you would change the act to deal with that. All I do is call that to your attention. We would have to look very carefully at what we mean by "in good faith" and "with good intentions." We have heard the expression. With good intentions, hell is proverbially paved. Maybe that is what I am speaking to.
I now wish to move to informed consent and simply point out again that a vulnerable person who does not have the means to communicate consent is doubly vulnerable. This speaks again to the need for interpreter services for the ethnic elderly and others who may not be able to speak the language of their care givers or the language of the advocate who is apparently working with them.
That is all I had to contribute today, and I am prepared to respond to questions.
Mr Poirier: I was listening to your comments and, being a Franco-Ontarian, I could have applied them to one of Canada's official languages. The same thing happens still very much. Yesterday, I wanted to give a copy to the parliamentary assistant to the Minister of Health showing where my good friend Chantal Hébert, who is the reporter for Le Devoir based in Ottawa, needed medical services for herself in an Ottawa hospital but also needed veterinary services for her cat. Her observation in 1992 was that when she went to the vet's place for her cat, they asked her if her cat was able to understand commands in English or French. She got better service in French for her cat than she got for herself in the hospital. So I understand where you are coming from.
Hell, there was a 1976 Dubois report that decried the lack of services available for elderly francophones and for children in the children's hospital; I guess a place like Toronto's Sick Kids, with a horrible name like that. It is still happening, and I can understand why you would come forward today. This type of thing is happening to francophones also and to multiethnic groups. Goodwill -- we are used to that. We know very much where goodwill stands, especially on St Valentine's Day like this. I sympathize with you, and believe me, it must be a horrible feeling being elderly in that type of situation. I was putting myself in the shoes of your mother-in-law. It must have been a bloody horrible feeling to have that done, and it is still happening with the francophone community the very same way.
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Dr Saldov: The United Nations has declared Toronto the most multicultural city in the world, and that is very nice, but if we are to live up to that designation in Ontario, I think we have an obligation to provide the cultural and ethnic services that reflect that.
I visited Australia last summer, where I attended a conference in which the issue of services to ethnic elderly was very much on the agenda. I would like to report to you that in Australia, despite the absence of a Human Rights Code, they have what they call an ethnic link program, funded by the Commonwealth government, that ensures that any person who does not speak the language of his or her care providers or service providers is supplied with an interpreter at the expense of the state. That could be in health care institutions; that could be in the courtrooms; it could be in dealing with social services. In any service that is publicly funded, a free interpreter is provided, and not only for linguistic communication, but also for cultural interpretation. It is quite a statement to say that in a country that has no Human Rights Code, they have gone beyond what we have done with our Human Rights Code.
Mr Poirier: Sure, exactly. Words are very nice, but I would rather be judged by the actions that we do or do not do than the words we say or do not say. With what is happening to intolerance and the hardening of attitudes right now -- we all know that in tough socioeconomic times, minorities and the other official language take it on the nose. It does not appear to be a very encouraging climate with the deformers -- I do not call them the Reformers but the deformers -- pushing for anti-multiculturalism, the Alliance for the Preservation of English in Canada with their attitudes against francophones and everything like that. Let's wish each other luck, my friend, because the climate is not that open, I guess, for that kind of situation.
Dr Saldov: Which suggests that we have to work that much harder --
Mr Poirier: You got it.
Dr Saldov: -- to counter a force that is moving to the right in its intolerance to different races.
Mr Poirier: Far right.
Mr J. Wilson: I resent the conversation that just took place, that anyone on the far right is somehow not compassionate or sensitive to multiculturalism or the need for linguistic services. In fact, it might have been a government in the past that was to the right but had a very large dose of compassion and introduced the programs we enjoy today and managed those programs --
Mr Winninger: Not in those areas.
Mr J. Wilson: For the left to think it has a corner on compassion is a misreading of history.
You raised an excellent point. My brothers-in-law are Chinese-Indonesian also, and my sister-in-law's mother has been in the hospital quite a few times. I know the family has had to do an around-the-clock vigil to make sure she understands, because she speaks very little English. So I have some understanding, although at a distance, of what you are going through.
My question, then, would be more to the government. The press release has a very good point, that advocates, particularly in Metropolitan Toronto, I would think, would have to be multilingual, certainly in both of Canada's official languages, I would think, and with the ethnic diversity in Toronto. I will maybe just make a statement. I would hate to see us having interpreters interpreting for the advocates who are speaking on behalf of the client. Maybe we could combine those services. I think the parliamentary assistant, Mr Wessenger, wants to comment on that.
The Chair: Do you want to comment on that?
Mr Wessenger: With this whole question, I understand that right now, under the Mental Health Act, there is currently funding available for interpreters for rights advice. You bring out the point that there is the same need in the other health care fields, and I would hope that would be addressed. The Ministry of Health does have a multicultural advisory committee which is advising with respect to this matter of the providing of services in multicultural settings, and there is a multicultural coordinator to look into these areas and bring forth the proper recommendations. So the matter is to our attention, but I agree with you that we need to address the problem. We are aware of it, but we really need to address it.
Dr Saldov: Two points that came out from both of your comments. First is that, yes, families frequently end up bearing much of the responsibility for interpreting, or other volunteers from the community or people visiting the hospital. What we found in the six months in 1990-91 is that there were increasing numbers of families who could not come to the hospital because they had two jobs. In a recession, I suspect that there are going to be more and more hardships on families and less time available unless funds are available for them to fund other professionals or support others going to the hospital. We found that to be a very disturbing trend, particularly in the Chinese community, where family is a very strong institution.
The second thing is that interpreters, which exist in some hospitals such as Mount Sinai, are there from 9 to 5. They come for meetings, so if you are calling for the bedpan, forget it; you are not going get your bedpan. These are essential services that contribute to the wellbeing and the dignity of people who are under care. So formal interpreter services might be fine at meetings, but there needs to be some systematic way of ensuring that the care provided and the advocacy provided are ongoing, not only at prescribed times.
Mr J. Wilson: You mentioned the recession. I imagine it is difficult for the government to ensure that you can provide the linguistic services required, because it is a spiral. I find that some people out in the street tend to forget that the reason you are doing two jobs is you are the highest-taxed jurisdiction in North America. We add more services, we have to pay for them, so you may do three jobs. I mean, I know my own staff. I have two people who are working here every day, getting paid fairly good money, and taking a second job at night just to make ends meet. So the government will have to keep that in mind. You add more services; you have to pay for them, too.
Mr Malkowski: Your points about interpreting services are very important. It is really something I have been very sensitive to because I use interpreters, so your points hit home. It is access to information. That is what is important.
Another point, of course, when it comes to access to information is that doctors need the correct information in order to help the patient. In order to get the right care, the communication and the cultural interpretation and the linguistic interpretation have to come through for the physician as well. The goal, of course, is to improve the access to services with sensitivity to cultural and linguistic needs for equal treatment in the hospital service.
I agree with what you talked about in your situations. You demonstrated about having your mother-in-law, the blind lady, having the IV, and I know that is very true for people in the community who are blind, who have the same experiences at hospitals. So it is something we have heard about and we face, yes.
Dr Saldov: The Doyle and Visano study of 1987, which addressed the problems of access to multicultural communities of health and social services, found that costs were increased because of the absence of interpreter services. People would leave the hospital without the proper aftercare or instructions or understanding of the aftercare instructions, and so were readmitted to hospital. Doctors who did not understand their patients, either their cultural meanings of health or illness or the words they spoke, took much longer to diagnose, and therefore the patient had to stay in hospital much longer. So by the absence of interpreter services, we may in fact be increasing costs beyond what it would cost to have them.
Mr J. Wilson: It is a good point and well taken, because we find that, for instance, if we could move more towards community-based care, we would probably decrease costs. It is that initial injection of funds to get the system up and going that seems to be the barrier at the moment.
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Ms Carter: This is a very important question that you have raised. This bill is being put forward by the Ministry of Citizenship, which is also the ministry responsible for multicultural affairs.
On page 2 of Bill 74, section 1, there are two clauses where we are stating the purposes of the act which could be relevant: "(a) to contribute to the empowerment of vulnerable persons and to promote respect for their rights, freedoms, autonomy and dignity;" and then "(d) to take into account the religion, culture and traditions of vulnerable persons." Hopefully, if we interpret this in that spirit, then these needs should be taken into account. Your point that it may be cheaper in the long run is certainly a valid one.
Just a thought that occurred to me: For a basic need like a bedpan, could hospitals not have some kind of signalling system that could be explained to a person and then they would know?
Dr Saldov: We established a list of Chinese words with the English phonetics and hung it up at the bedside of our mother-in-law; however, several nurses did not see it as their responsibility to even look at that list.
Ms Carter: I see. They would not cooperate.
Dr Saldov: That is beyond their mandate and responsibility. The fact that they might learn those words because of the numbers of Chinese or Portuguese or Italians is not within their realm of responsibility. There is only one nursing home in Toronto that makes it its responsibility, and that is the Rekai Centre on Sherbourne Street where all staff must learn a short list of key words in order to ensure that patients are understood. It would be most helpful if that would be part of the job description, that you had to at least, if not learn the words, pay attention to a list of words in order to facilitate the care.
I appreciate the mention of section 1 regarding the purposes of the act, and you drew attention to clause 1(d) which asks that religion, culture and traditions of vulnerable persons be taken into account. It is not sufficient to say "culture and traditions." Language should be in there, because if we only look at culture, which is important in itself because it conveys certain meanings of health and illness, we do not necessarily have to pay attention to language. If I were drafting this legislation, I would want to include language.
The Chair: Mr Wessenger, do you have a brief comment or question?
Mr Wessenger: No, I do not.
The Chair: Okay. Dr Saldov, on behalf of the committee, I would like to thank you for taking the time out this morning and giving us your presentation.
Dr Saldov: Thank you.
TERRY L. F. PARKER
The Chair: I would like to call forward our next presenter, Terry Parker. Good morning.
Mr Parker: Good morning.
The Chair: Could you identify yourself for the record, and then please proceed.
Mr Parker: My name is Terry Parker, a resident of Toronto, also a member of APSAO. Dear ladies and gentlemen, members of the Legislature, may I express that what is needed here today is not An Act respecting Consent to Treatment but rather an act respecting consent to medical experimentation that has been purported to be a form of treatment. In other words, in general terms, there is no great public outcry when consenting to a drug or surgical treatment that is of sincere benefit for the patient's best interest and wellbeing. However, if drug or surgical experimentation is imposed without informed consent or parental knowledge and under the guise as being a form of treatment, one will discover public outcry, if not outrage.
When reading this bill, I am extremely offended when I read section 15, which states:
"Nothing in this act authorizes a health practitioner to perform any of the following procedures on a person who is incapable with respect to the procedure:
"1. A procedure whose primary purpose is research.
"2. Sterilization that is not medically necessary for the protection of the person's health.
"3. The removal of regenerative or non-regenerative tissue for implantation in another person's body."
My chief concern is that although these procedures have been excluded from this bill, the fact remains that they have been carried out under the guise of being a form of medical treatment. As such, no provision or commission is available to the public to provide a fair, impartial review of experimental procedures carried out under the guise of a medical treatment.
To demonstrate my point, I have provided the committee with the following documentation to support my position:
1. A 1972 consent form and present consent form used by the Hospital for Sick Children;
2. A letter from my mother, Mrs Helen Cork, submitted to a Dr Hoffman dated July 22, 1989;
3. A letter from my former attorney, Ms Marlys Edwardh, to the area director of legal aid, dated October 6, 1977;
4. A newsletter by Dr Peter Breggin, dated October 1973, outlining current psychosurgery in Canada;
5. Protocol and consent forms pertaining to the marijuana/epilepsy study;
6. Results of the study, entitled The Effect of Marijuana on Seizure Activity in Man, received June 15, 1980.
First, the 1972 consent form used by the Hospital for Sick Children does not include or provide the risks of any experimental procedure. If no experimental procedure was carried out, then I find it more than disturbing why there has been no response to my mother's letter, dated July 22, 1989, which you will find enclosed. It asks four questions:
"1. Why was I not informed that you were going to keep him awake during this operation?
"2. What happened to the photos that were taken during this operation?
"3. Why was Terry given a false photo of his brain?
"4. Did you not realize the after-effects in later years because of the way this operation was done?"
My mother ends this letter requesting, "I would like answers to these questions so I can put my mind to rest that at the time I did the best for him."
Today is February 14, 1992. Surely this doctor has been given more than sufficient time to reply. Obviously this doctor has a great deal to conceal. As such, he does not wish to disclose that he carried out an experimental procedure under the guise of medical treatment. Therefore, what a doctor carries out in an operating room and what is agreed on the consent form may not always be consistent and for the patient's best interest.
Second, I present two consent forms and related material in regard to the 1979 marijuana/epilepsy experiment. While being the volunteer subject at risk of this experiment, I cooperated in order to verify and substantiate the therapeutic potential of cannabis for the control of epilepsy. As such, it is questionable whether my attorney, Marlys Edwardh, received a misconception by a Dr Eugene LeBlanc that one of the psychoactive properties in cannabis, known as delta-9-tetrahydrocannabinol, in abbreviation delta-9-THC, also consisted of the anti-convulsant property known as cannabidiol, abbreviation CBD.
This misconception appears factual in Ms Edwardh's letter to the area director of legal aid, which you will find enclosed, dated October 6, 1977. On page 3, paragraph 5, and page 4, paragraph 1, she states she requested Dr Eugene LeBlanc of the Addiction Research Foundation to do a search in the field of marijuana and epilepsy. Ms Edwardh demonstrates her misconception where she states, "Dr LeBlanc canvassed the research into the anti-convulsant activity of cannabidiol and cannabinol and there is a body of research which seems to indicate that one of the components of cannabis delta-9-THC has an anti-convulsant property which has been in some cases and could well be effective in assisting in the treatment of epilepsy."
One will notice that on the enclosed consent forms pertaining to this experiment lies a juxtaposition of delta-9-tetrahydrocannabinol and marijuana, thus giving a nebulous concept as to what drug is being administered. Yet I find myself being influenced under duress by a malicious doctor into signing, or threatened to never have any other opportunity to verify the potential of cannabis for the control of epilepsy.
Nowadays, realizing there is a great campaign for drug testing in the workplace, it is not difficult to surmise where the blood and urine samples were obtained in order to detect delta-9-THC in the human system. Therefore, this experiment, with its devious consent forms, had a purpose, but certainly not for the interest of myself or to evaluate the therapeutic potential of marijuana for the control of epilepsy.
Despite complaints to the College of Physicians and Surgeons of Ontario and appeals to the Health Disciplines Board, no impartial investigation was ever conducted into these three incidents of assault where fraud had been exercised involving medical experimentation. Yet I am to believe these procedures are a form of medical treatment.
Taking into consideration my personal experiences and the severe adverse effects, I would like to take the opportunity to recommend to this committee that section 8 be amended to recognize the age of 18 as presumption of capacity rather than 16, unless it be for an emergency crisis situation, on the basis that at 16 years of age such person may be influenced to sign consent for a procedure that would not be in his or her interest.
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Subsection 10(3) should be accepted only if there is an office or a commission that an advocate or attorney is accountable to, to ensure that an explanation has not been put forth with deceit, coercion or misleading information. As history has proven, an advocate or attorney may think he or she is providing sufficient information, yet if it is discovered that an advocate or attorney has been used as a pawn to deceive a patient, there simply is no enforcement to ensure that a patient is not deceived by an ill-informed advocate or attorney at law. Certainly this would save expense of fraudulent research or non-therapeutic treatment.
It is further submitted that section 15 be included rather than excluded since there is no act when addressing: a procedure whose primary purpose is research; sterilization that is not medically necessary for the protection of the person's health; the removal of regenerative or non-regenerative tissue for implantation in another person's body. It can be recognized that in some situations research is needed in order to provide treatment as defined in this act. It is submitted that persons subject to risk of medical experimentation should have the right to a full, informed consent as to the risk involved and not be subject to cruel and unusual treatment when the procedure is not for the benefit of the subject at risk of medical research.
It is further submitted that section 24 be amended to provide a subsection to address the issue of invalid consent and that health practitioners be accountable for their actions and face liability when it is discovered they have obtained consent through deceit, misinformation, coercion or duress.
It is further submitted that subsection 32(2) be amended to instruct the Lieutenant Governor to compose the Consent and Capacity Review Board of at least 50% of members recognized as consumer/survivors of health care services in order to provide a board that can be recognized as fair and impartial.
It is submitted that subsection 46(2) be amended so that this act may apply in respect to previous treatment, whereas it would be applicable under the suggested annotations: that consent was obtained through fraudulent means; that treatment was not of therapeutic value; that consent was obtained without adhering to the guidelines as set out by the Medical Research Council of Canada.
In conclusion, it has been my personal experience that not all forms of consent to treatment were true in their words in regard to the actual treatment being provided. I can say this because I find myself in the same predicament as the Canadian army veterans who in 1949 were subject to lobotomy and left to suffer severe adverse effects; also, the CIA victims unwitting of brainwashing research experiments carried out by Dr Ian Cameron and the Allen Memorial Institute during the 1950s; and, lest we forget, the other abuses carried out by the clergy and other organizations which have been exposed over the past few years.
I am here to represent those who have been subject to risk of unwitting medical experimentation, from children to seniors. For this act to neglect the security and wellbeing of persons such as myself, no doubt the toll would be much greater for society to pay in the future. If Bill 109, the Consent to Treatment Act, is to be recognized as a contract, surely, such as in any formal contract, there exist safety codes, inspections, standards and performance. If this bill cannot comply with the abovementioned conditions, then consumers of health care services will not be provided the protection in order to secure good health and wellbeing.
I hope this information has been of interest and particular concern to the standing committee on administration of justice. I certainly hope my insight may expand your knowledge to the benefit of all mankind. Looking forward to your better judgement, may I thank you for this opportunity to address the broader issue related to this bill, and I welcome any further inquiry. This is my submission.
The Chair: Thank you. Questions and comments, Mr Poirier?
Mr Poirier: Thank you, Mr Parker. On page 4 and your proposed amendment "that section 8 be amended to recognize the age 18 as presumption of capacity, rather than 16," you will probably be shocked to know that since the beginning there has been almost a consensus to lower the age, and even remove the age, because of other situations that may not be the ones you have described. Obviously people have other reasons.
I think I can understand where you are coming from, as to why you want to suggest that; correct me if I am wrong, but unless I missed something, you are the first person to come forward who wants to increase it to 18, as opposed to eliminating it completely, so that people as young as maybe 12 and 10 -- not for the type of health services you are looking at, but for other types of health services.
Of course, it would be difficult to make a push, to say that for certain types of health services it is that age, or that other age, or start making a whole chart. That would probably be a nightmare to even try to think about it, but I just want to make you aware that you are really standing alone in that presumption, with all due respect.
You may want to compare, you may want to look at the Hansard as to why other people want to remove the age limit, because you are very much alone in this recommendation. I just thought you should be aware of this.
Mr Parker: That is accepted.
Mr J. Wilson: Thank you for your frankness. Am I to take it from your brief, your presentation, that when you made complaints to the College of Physicians and Surgeons, nothing was ever done to act on your complaints?
Mr Parker: I have provided the College of Physicians and Surgeons with information, for example, with the marijuana/epilepsy experiment, where two doctors give one story to the Ombudsman's office and then when I take the complaint further to the college there is a completely different story to the College of Physicians and Surgeons. Then when I take it back to the Ombudsman's office, they will not deal with it. When I take it to the Health Disciplines Board the board makes its decision without even looking at the evidence. There are total inconsistencies with their information through the college and the Ombudsman's office. It is just totally neglected and they are not hired to -- I mean, it is just one hell of a scandal, to say the least.
Mr J. Wilson: Thank you.
Mr Parker: When it comes to research experimentation, I have first-hand experience in this matter, sir, and it is abhorrent to see that the person who is subjected to the experimentation is not provided with a fair, impartial review by the college. There is no openness. You tend to see just basically one letter. There is no actual investigator, no policing power to act as advocate and to ensure protection of the consumer of health care services. That is my point.
Mr Wessenger: Mr Parker, it seems to me, if I am correct, that your major complaint here is that there was never any informed consent, never any proper information given either to yourself or your mother with respect to the procedures that were taken with respect to you, is that right?
Mr Parker: That is correct. They did it underhandedly, sneakily, it was just criminal -- that is the word to use -- it was extremely criminal what they pulled off, to my knowledge, for nothing more than psychiatric research in order to find ways and means to control psychiatric patients through a surgical technique rather than medication. So they went ahead with a covert operation during the late 1960s and early 1970s, using mentally retarded people at Toronto General and epileptic children at the Hospital for Sick Children.
The adverse effects have been enormous, which I can obtain through records right across Ontario and the United States. You would think that when you go to a hospital and they say they are going to do something to you or whatever, they are going to be true and honest and get consent. In my experience, they have not been true and honest, and yet there is no impartial body besides the college to look into these matters, to provide protection in health care services.
Mr Wessenger: Yes, I think you have made your point very well. It is very important that informed consent be obtained. Thank you very much.
The Chair: Thank you, Mr Wessenger. Mr Parker, on behalf of the committee I would like to thank you for taking the time out this morning to come in and give your presentation. Thank you very much.
Mr Parker: Thank you.
The Chair: This committee stands recessed until 1:30 this afternoon.
The committee recessed at 1159.
AFTERNOON SITTING
The committee resumed at 1337.
ONTARIO ASSOCIATION OF SPEECH-LANGUAGE PATHOLOGISTS AND AUDIOLOGISTS
The Chair: Our first presenter will be the Ontario Association of Speech-Language Pathologists and Audiologists. Good afternoon. Would you please identify yourselves for the record and then proceed.
Mr Welland: Good afternoon. My name is Rick Welland. My colleague is Sheila MacDonald. As you mentioned, we represent the Ontario Association of Speech-Language Pathologists and Audiologists, otherwise known as OSLA. We represent the 1,500 speech-language pathologists and audiologists in Ontario as well as persons with communication disorders.
Our presentation this afternoon is in regard to Bills 74, 108 and 109. Each of you should have a copy of our brief. It consists of a summary, detailed comments with our rationale, appendix A, which contains four case studies, and appendix B, which contains a chart that is an overview of the effects of cognitively based communication disorders on capacity. I will be presenting some of our summary comments, of which there are four main points. Sheila will then present a videotape of a couple of case studies. We will leave some time for questions.
The first question you may ask yourselves is, why are speech-language pathologists and audiologists interested in these three bills? Speech-language pathologists and audiologists are the professionals who assess and treat communicative disorders. Communication is intimately tied to the notions of consent to treatment, capacity and advocacy.
I draw your attention to Bill 108, section 46. There is a quote in there concerning incapacity of personal care. The capacity definition in the Consent to Treatment Act is worded very similarly. The part I have excerpted says, "if the person is not able to understand information that is relevant to making a decision," and so on. I highlight the word "understand" because it is certainly one of the integral acts of communicating. That passage goes on to talk about appreciating consequences of decisions. That is certainly another facet that is critical to the definition of capacity or incapacity and it is certainly a cognitive as well as a communicative act.
Bill 74, clause 7(1)(b), talks about the role of advocates and says that one of the their roles is "to help vulnerable persons to express and act on their wishes, ascertain and exercise their rights" and "speak on their own behalf." Certainly expressing one's wishes and speaking for one's self are important concepts for how vulnerable persons are expected to assist advocates in performing their duties. These are also integral acts of communication. Ascertaining one's rights and making decisions again are cognitive and communicative acts.
To give you some kind of background of what I am talking about by cognition and why we are interested in that and how it affects capacity, cognition affects communication, which in turn affects capacity, which in turn affects how the person functions in our society. In our role as advocates for our patients' rights we are very much concerned with capacity.
Let me give you a very brief overview of what cognition entails. These are the main processes that come under the cognition umbrella, so to speak: attention, concentration, memory, creative thinking or problem-solving, and reasoning or judgement. Those are the things we mean when we are talking about cognition.
I would like to now address the four main points from our summary that we would like to highlight for you this afternoon.
The first point is that cognitive and/or communication disorders are very much different from mental or physical disabilities, which is part of the current definition of a vulnerable person. Cognitively based communication disorders that might result from something like a closed-head injury, some strokes, brain tumours and dementias are not the same as emotional or psychiatric disorders, which is the usual thing the layperson would infer from the word "mental." A person with a purely physical disability, while otherwise challenged, can still communicate, make decisions, and in many cases, act upon those decisions. We believe that cognitive and/or communication disorders are complex enough and distinctive enough to warrant specific reference in the definition of a vulnerable person.
Second, many people with communication disorders, perhaps due to a neurological condition such as a stroke, cerebral palsy or Lou Gehrig's disease, have difficulty speaking clearly enough to be understood by others. Still others who may have had a closed-head injury or another kind of stroke or a brain tumour have difficulty showing that they understand what is being said. For many, simply asking them, "Do you understand the information being given to you?" does not give them the opportunity to perform within their capabilities. We suggest that references within the acts that talk about knowing, understanding or appreciating information be prefaced by a term like "demonstrate." How the person is asked to demonstrate understanding would of course vary with the skills of the vulnerable person and his or her deficits.
Our third point entails the assessment of capacity. It is our understanding that a capacity determination is a complex process. We believe it should be conducted by several professionals who each contribute their own distinctive perspective and expertise to the process. For example, a psychiatrist would approach a capacity determination in a very much different way from the way a psychologist would approach a capacity determination, while the speech-language pathologist would approach a capacity determination in again a different way -- that is, from the viewpoint of communication and cognition and how they affect capacity. It should be self-evident that where communication is an issue the speech-language pathologist and/or the audiologist are the ones who should be consulted.
I do not believe we can assume that other professionals know to consult the professional with the most expertise in addressing the special needs of the person being addressed. We believe the legislation needs to state more explicitly the interdisciplinary nature of capacity determination. Also, where advocates are concerned, the legislation needs to be explicit regarding how this person's special needs become determined. We believe it should be explicitly stated that where the special needs are unclear or unknown, an assessment or perhaps assessments should be conducted by the professional or professionals who have the most expertise in addressing those special needs.
Our final point concerns the use of existing advocates. We would like to remind the government that there are already advocates working on behalf of some vulnerable persons. Specifically, people with cognitive and/or communication disorders have historically had speech-language pathologists and audiologists who, as part of their role, act as advocates for their clients. Often we are the ones who best understand the individual's strengths and areas of weakness. We are often also the ones who know how to provide the most opportunity for those persons to demonstrate their maximum independence in communicating. Oftentimes we are also called upon to act as a translator, sometimes for the person's behaviour such that other people understand why the person is acting in that way, sometimes to interpret specifically what the communicatively impaired person is saying, and sometimes to interpret what others are saying to that person.
Speech-language pathologists and audiologists have the expertise and are certainly willing to act as educators of other advocates. But we ask if it is in the public's best interests to replace existing, very well-trained advocates with new untrained advocates. This is especially for individuals with communication disorders. Surely hiring and training new advocates would be more costly than utilizing the unique skills of those professionals who are already acting as advocates.
I would like to turn the presentation over to Sheila MacDonald, who will show you a videotape.
Ms MacDonald: I will be moving back and forth between the video so I am going to put this microphone on and hope you can hear me. Can you hear me if I speak like this?
Interjections.
Ms MacDonald: I am not Hansard-literate.
Interjection.
The Chair: Possibly I could suggest that the members over here come to this side so they can see better.
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Ms MacDonald: That might be a good idea. What I am going to show you today are three people, all of whom have different issues with regard to cognition, communication and capacity. All three have been involved in some sort of accident that caused a head injury. All three have very different abilities and require different advocates and different interpretations of, and assistance with, informed consent etc. These three cases should highlight for you some of the points that Rick just made.
The first person is someone who was involved in a motor vehicle accident. She is paralysed completely. She is unable to speak in the normal way. She uses her eyes to communicate. She lifts her eyes up for "Yes" and down for "No." Using this system I am able to learn from her what her needs are and to advocate on her behalf. I hope this video will work.
[Audio-visual presentation]
Ms MacDonald: She is spelling to me. I am moving my hand along a letterboard. She lifts her eyes up when I get to the right letter. I have asked her, "What things do you need help with in the evening that you are not getting enough help with right now?" This woman demonstrates for us nicely the point that a person can, despite the fact that they have physical difficulty, express a wish, given the appropriate assistance.
This woman is able to understand and appreciate the consequences of her decisions. She just needs some assistance in expressing those decisions. Any advocate would have to be trained in the appropriate questioning in order to get at what it is she needs.
I might add that she spent some time to convey things to me, such as the fact that she was allergic to penicillin. I had to then convey that to the staff, but first advocate on her behalf the fact that she was cognitively intact in order to be able to say that, because there was a bit of a bias that someone with a head injury might not be cognitively intact.
Also, we had to assist her with informed consent decisions as well, in that she was moved on to another hospital and she had to be given a choice about whether she would like to move on to that hospital or not. Plus there were medical procedures where her consent was needed and I, as a speech-language pathologist, interpreted for her at the time what her choice was in that.
The next person I would like to show you is a gentleman who was involved in an accident and sustained a head injury. He, unlike this woman, is able to communicate very quickly and with good speech, but his thinking skills are impaired. He may look good initially at the bedside but not be able to make an informed judgement or appreciate the consequences of a decision.
Allow me a few moments while I eject this and move on to the next.
This man was on an orthopaedic floor. Initially he was not felt to have a head injury. He would probably have been discharged to a orthopaedic hospital, with everyone thinking that he was thinking just fine, unless the head injury team had not gone in to learn otherwise. So you get the point that he is sounding all right.
Now I have to turn the volume down and fast forward. Bear with me a moment because the contrast is worth it in the end.
In the next part you are going to see where he is not thinking so clearly. We are almost there. Initially you will hear him sounding quite clear and answering simple questions very well. As the questions get harder he will break down. Listen carefully.
I think we will stop there.
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Mr Winninger: I wanted it to go on.
Ms MacDonald: I know. You get hooked on it.
To conclude, I showed you today two different cases: one who had a communication impairment, one who had a cognitively based communication impairment, not a physical impairment, and neither of them had a mental disorder. This is our point today.
To reiterate and to conclude before questions, the three things I hope these videos helped to elaborate on -- the three points that Rick has already made very nicely -- are that persons with cognitive and communication disorders are different in terms of their needs from those with mental or physical disabilities, that an individual must demonstrate understanding or appreciation before one can assume that there is adequate understanding, and that an assessment and determination of cognitive competency, particularly among the communicatively impaired and the cognitively impaired, is a complex endeavour that requires special expertise and a team approach.
With that I will pass on for questions.
Mr Poirier: It is not so much a question as appreciation for bringing forward these distinctions that obviously can get caught in the cracks. They are very important points that I am sure will be noted by legal counsel to make sure that whatever is brought forward is respectful of that, and I fully support that. Thank you for bringing it forward.
Mr J. Wilson: Thank you to the presenters. I thought the video was a good idea. In the latter part though, in all seriousness, although I do not doubt the diagnosis that there was a cognitive dysfunction there, he did have good reasoning for his choices. Does he get points for that?
Ms MacDonald: Yes.
Mr J. Wilson: My mother is a special ed teacher and she is always putting me through these things, or at least when I was young, and I never used to --
Ms MacDonald: Did you have any difficulty keeping up with them? I am teasing.
Mr J. Wilson: You have been watching the hearings too much.
Ms MacDonald: Mr Wilson, you have brought up a very important point: that no single test can be all-conclusive. In fact there were some questions where he reasoned well. So no single test is conclusive. On an earlier test, which I did not get to show you so it is not fair, he did not know how old he was. I think that one who is to do his own financial accounts etc, should at least know his age and the year.
Mr J. Wilson: Sure. Just so that I have the general purpose of this, what you are saying is that speech-language pathologists do advocacy now -- that is clear from the video -- and that you must be included in any future advocacy systems, it is about that simple, or advocates would have to have a high degree of training such as yourselves. What do you think of the latter part?
Ms MacDonald: Yes. I think that any person with a cognitive or communication disorder should have a team of people to assess, first of all, to help to maximize that person's skills and his or her ability in getting across his needs and choices, and that where there is a cognitive or communication disorder, a speech pathologist would be very helpful in at least training the advocate, if not already advocating on the person's behalf.
Sometimes you are already going to advocate. If this person tells me that she is allergic to penicillin, I had better move on that right away and not wait for an advocate to come into the hospital and fill out forms with us. But on the other hand, there are some things where it would go beyond the interaction of the speech pathologist and an advocate would be better -- for example, maybe to go to court with the person or whatever.
Mr J. Wilson: Okay. I appreciate that. Thank you for the clarification.
Mr Poirier: A technical question. When you were with that woman, what you find out about what she needs, what she wants, does not want, allergic to penicillin, for example, I presume that all goes in a dossier. Is that dossier available to other care givers, for them not to have to repeat the same tests again every time?
Ms MacDonald: Yes. Good point. In fact, I sent this video on to the next rehabilitation hospital. That is one example, and there is always a medical chart in this person's case. Now if the person were in the community, I think we need to get better at having those sorts of dossiers moving along with the person in the community.
Mr Poirier: How do you handle the confidentiality of some of the information that you get out of that? Is that a problem?
Ms MacDonald: Again, it is very tricky in determining whether the person is able to give us consent to send on the information, to release the information. So if they are able to give us consent, we have to ask them. If they are not able to give us consent, then we as a team help the family, or whoever problem-solves, about who is going to be that person's advocate, and then we get their consent.
Mr Poirier: Because I presume with a person in that type of state, just about every care giver at every level would have to consult that dossier, because not everyone has your technical skills to be able to search for and ask the right questions and proceed in the right fashion to get to the right answer as soon as possible.
Ms MacDonald: Exactly, yes.
Mr Poirier: So just about anybody from the RNA to the RN to the doctor to everybody, right?
Ms MacDonald: Yes. There is constant training that we all do with all the staff in order to reach that level of understanding.
I was just going to add one more thing. One of the reasons I, as an individual, am excited about this legislation, all three acts, is that I think finally it is going to create a community awareness of these needs so that it will be easier to argue that all staff must attend to these people's needs.
Mr Poirier: One last point. Will the confidentiality of all this be enhanced or harmed or affected by the new acts? The confidentiality of what you may find or learn from your interviews.
Ms MacDonald: That is a good question. Do you want to take that one?
Mr Poirier: It is a test, by the way. It is a test.
Ms MacDonald: I think it would be enhanced, because first of all you would have to ask the person having been deemed cognitively intact but communicatively impaired and, second, it could be faster to make a decision of temporary incompetency to get on with things if information needs to be sent but you want to declare that person temporarily unable to give you consent.
Mr Poirier: Temporarily.
Ms MacDonald: Yes.
Mr Poirier: Tell me about it.
Ms MacDonald: In the hospital situation we are all very frustrated in working with the old acts, where you had to wait until you got someone declared mentally incompetent before you could proceed with anything. Then once they were declared mentally incompetent, three months later when they are able to make their own decisions they are still finding themselves having to fill out forms to get socks at Zellers or whatever.
Mr Malkowski: I found your presentation fascinating and I was very impressed with it.
I would like to ask you two brief questions. First, would the term "neurological disability" cover the kinds of things you are talking about, the ability to understand, to reason? Would that solve that problem?
Mr Welland: Not in all cases. Certainly there are many neurological conditions where the person's ability to reason and think are not affected. I can think of many types of individuals who have had a stroke. People who have Lou Gehrig's disease, for example, are not so affected but people with closed head injury in most cases are affected in that way. Some people with another type of stroke, stroke on the right side of the brain, in many cases are affected in their thinking skills and other kinds of neurologic conditions such as that.
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Mr Malkowski: Okay. The second question: Deaf people, or people who are hard of hearing, have already tried to perhaps get sign language or oral interpreter services at the hospitals, and often their experience has been one of frustration because the medical profession refuses to recognize interpreter services during assessments. Have you had the same experience with the medical profession in terms of accepting the speech-language pathologists acting as interpreters? Communication is so important to the assessment. What kinds of experience have you had with the medical profession?
Ms MacDonald: I have had just two times when I have been working with someone who has a hearing impairment and needs an interpreter. I think the best way to describe the situation was that it was clumsy, in that there was a time lag before we could get a good interpreter there and before everyone realized the necessity of having a good interpreter there at all times. I agree with you that we should make that process a lot more easy to access, but I have never had a physician deny the person a right to an interpreter. I would be horrified if that happened.
Mr Welland: Further to that point: There are many examples, and this is not with the individual who may be deaf but hard of hearing. This certainly comes into play with the elderly individual who has been hospitalized. In many cases it is quite difficult to get a hearing assessment done prior to some of the other assessments being done. The consequence of that is, in a number of cases, and unfortunately far too many, the assumption is made that the person does poorly on the testing because he is dementing, when in reality he has hearing loss.
Mr Winninger: I got a lot out of your presentation. I note that the third point of your summary suggests that assessments of professionals come from the most competent professional to address their special needs. I want to make sure that you are aware of section 50 of Bill 108, which provides that, in a validation of a power of attorney for the person, the wishes of the person can be respected. They might name two assessors in the power of attorney in the event that they become incapable, and that might include a speech pathologist.
I would also suggest that if there are no preferences indicated in the power of attorney, the second part of section 50 provides that the assessment will be done not only by a physician but another assessor as well. I would hope that that particular section will serve to address your concern that the communication and cognitive disorders will be ascertained.
Mr Welland: I think the attempt is certainly clearly there. However, it is our experience that in many cases the communication disorder is not even recognized by, for example, the physician, who may be the person who first has contact with the individual. In that case there would be no guarantee that the speech-language pathologist or the audiologist would be consulted. I am assuming you are talking about the power of attorney being predetermined. Is that the one you are referring to?
Mr Winninger: I am referring to when a power of attorney is validated. The power of attorney may or may not state a preference for assessors as to capacity. That is section 50.
Mr Welland: Right.
Mr Winninger: How would you get around your concern that a physician may not be sensitive to the need for an assessor as to communication and cognitive disorders?
Ms MacDonald: You make it mandatory that any person be assessed by a team of individuals and you give the team of individuals the right to make statements on that person's behalf in court or in any serious situation rather than having, as it is right now, a physician's signature or two physicians' signatures.
Sometimes a team might involve a nurse who sees the person for 24 hours a day and knows that John Smith wanders at night, although he sounds clear in the daytime. Sometimes the best assessor might be a psychiatrist and a nurse. Sometimes the best assessor might be a speech pathologist and a social worker where there is a question of whether it is depression or an unwillingness to talk or an inability to talk.
We have to be flexible and say that it has to be a team, and for any type of disorder that team should be, in a sense, driven by the individual's needs rather than by a predetermined formula.
The Chair: Ms MacDonald and Mr Welland, on behalf of the committee I would like to thank you for taking the time out this afternoon and coming here to give your presentation.
Mr Welland: Thank you very much.
ADULT PROTECTIVE SERVICES ASSOCIATION OF ONTARIO
The Chair: I would like to call forward our next witnesses, Gianni Corini and Steve Tennant. Good afternoon. As soon as you are comfortable, could you please identify yourselves for the record and then please proceed.
Mr Corini: Good afternoon. My name is Gianni Corini. I have been an APS worker since 1978 and a member of the Adult Protective Services Association of Ontario since its inception. I represented the association on substitute decision-making for mentally incompetent persons and more recently on the Ontario Advocacy Coalition. I am also the past chairperson of the Adult Protective Services Association of Ontario. We are here representing the association today. I presently act as a consultant to the association. My colleague, Steve Tennant, is also an APSW and he will be introducing himself.
Mr Tennant: Good afternoon on this day of hearts. Happy Valentine's Day. I am Steve Tennant. I live in lovely downtown Perth, Ontario. I am also an APSW and have been one for 10 years. I have worked in the field supporting individuals with developmental handicaps for the past 18 years in various areas of the province.
Mr Corini: As a way of opening, I would like to express the APS workers' appreciation to the committee for the opportunity given today to represent the view of APSWs across the province on what we consider literally a vital piece of legislation, Bill 74. At the outset, APSAO would like to express its support to the introduction of advocacy legislation and today we welcome the opportunity to address some of the concerns we have in respect of the introduction of Bill 74. Because of time constraints today, we will highlight aspects of the submission that is before you and also a memorandum that was later introduced to the submission.
We feel that our attention should be concentrated on some aspects of the bill that we feel are particularly important.
Mr Tennant: By way of background, the Adult Protective Services Association of Ontario, more commonly APSAO, is a non-profit provincial body representing approximately 175 adult protective services workers in Ontario.
The adult protective services program was launched in 1974 by the Conservative government following public concern about individuals with adult mental handicaps living independently in the community without sufficient support. There were also concerns that guardianship would be overutilized for these individuals if they did not have advocates to protect their interests.
The provincial guidelines developed by the ministry, which stress advocacy as an important function of these workers, have never been fully addressed since APSWs are unable to properly exercise their advocacy function due to the conflict of interest of being sponsored by the ministry, which is often the author of their clients' difficulties.
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Mr Corini: The Adult Protective Services Association is very pleased that the government has undertaken to introduce this important act to protect the rights of disadvantaged people. It contains several very important provisions concerning advocates' access to records, their clients, and facilities which correct long-standing difficulties advocates often face in seeking redress for their clients.
The basic philosophy of the bill is also sound in that it promotes self-advocacy and stresses a community development approach in the provision of advocacy services. It is a culturally sensitive bill which empowers people who have been disadvantaged by charitable and service-oriented approaches to their problems which have tended to promote a patronizing atmosphere, thereby undermining their efforts to achieve true independence.
This association strongly supports the government's decision to ensure consumer control of the Advocacy Commission and we support an open-ended definition of who will require advocacy services. Too often new agencies and services have tended to exclude people. This act is drafted in a way which includes people. It is a step which, in our view, must be taken.
We feel that required additions and modifications are necessary to the bill and we would like to stress your attention on the fact that the Advocacy Act does not rationalize the existing advocacy system.
There are several areas where the bill falls short of expectations. It does not take a comprehensive approach to rationalizing the existing advocacy system. The psychiatric patient advocate program currently housed in the Ministry of Health will transfer to the new Advocacy Commission, thereby ending a long-standing conflict of interest for the advocates employed by that program. But the bill leaves adult protective services workers, who also have an advocacy mandate under provincial guidelines, mired within the Ministry of Community and Social Services which does not support their advocacy efforts. This creates a basic inequity between psychiatric survivors in facilities and those with developmental disabilities in group homes. One group can expect to have an independent advocate who can act vigorously for them, whereas the other will have to rely on an advocate whose salary is paid by the same ministry which pays the salaries of group home staff.
Similarly, the act does not deal with the office of child and family services advocacy, also housed within the Ministry of Community and Social Services. This office deals with children and adults, and its advocates are not free to act without conflict of interest. There is some concern that advocates in this office see their role as one of listening and mediation rather than vigorous advocacy because of conflict of interest. This is an issue that should have been addressed by the Advocacy Act and was not.
We are therefore recommending that the act include provisions which transfer the adult protective services system from the Ministry of Community and Social Services, intact, to the -- originally we said "to the new Advocacy Commission," but we feel at this point that perhaps a parallel program with the office for disabled individuals can also be sufficient.
We further recommend that the advocates in the office of child and family services advocacy come under the auspices of the commission until such time as the government establishes an independent and comprehensive advocacy system for children.
Mr Tennant: Moving down to (c), the bill also has no provision dealing with emergency entry for advocates who have reasonable grounds to believe that someone is being harmed or is in imminent danger. An example might be an advocate approaching a boarding home where the beating of a resident is in progress. It is likely that as soon as the advocate leaves to obtain a warrant and alert the police, the beating will resume. As we saw in the Cedar Glen case, beatings like this can result in death. The new act requires a section dealing with emergency entry.
Moving to (e), the selection process for representatives for the commission does not ensure that those who are the most vulnerable in our society, precisely because they are non-verbal, comatose or otherwise unable to express their wishes, will have an adequate representation on the commission.
Individuals who carry various diagnostic or social labels who have formed organizations to address their needs are very capable of advancing their particular interests. However, those who are not capable of forming or joining organizations are often those who have the most to lose, and they are also often the individuals most likely to be victims of abuse or neglect.
We are recommending that the minister appoint at least two representatives to the commission with a demonstrated track record in acting effectively on behalf of severely disabled persons who are unable to indicate their wishes because of severe cognitive disorders, severe brain injuries, perhaps because of drug or alcohol abuse, being comatose, or for any other reason.
There is an oft-repeated phrase that states that society is judged on the support provided to the least able. Given that Ontario is taking on the task of preparing this act, let's make sure we are able to hear from those who are least able to be represented.
Moving on to (f), the act does not provide for a minimum number of regional offices to ensure that advocates are as available to people in Kapuskasing as they are to those in Metro Toronto. We recommend that the act include a minimum number of regional offices. Ontario is a large place and it is not just made up of urban areas. People do not have transportation availability, so the availability of the advocates across our province is something that is very important and the destruction of that is being seen right now in the APS program.
Mr Corini: One of the aspects in doing our job and in our experience is that -- and we have seen it with the adult protective service worker program when we have done quite a bit of systemic advocacy -- an act that empowers advocates and their clients but does not demand responses from government can be very ineffective. Even the best advocate can be thwarted where there is no duty placed upon government and its agencies and commissions to respond appropriately where an advocate raises concerns on a client's behalf.
As an example, APSAO has been, as I have just said, for several months raising systemic concerns about the confidentiality of clients' records held by agencies funded by the Ministry of Community and Social Services. The ministry, including the minister's office, has been exceedingly lax in responding to these very basic concerns. We therefore recommend a provision in the act which requires government to respond to concerns raised by the commission within a specified period of time.
Mr Tennant: Section 7 of the act discusses the functions of the commission. Nowhere does it say that advocates will promote the integration of disadvantaged people into the mainstream of community life. This is an important point. The act should list as one of the functions of the commission "to assist vulnerable persons to fully integrate into all aspects of community life."
There is also no function which specifically says that advocates will take action to protect their clients from abuse and neglect. In light of the institutional abuses which have been seen over the past several years, this needs to be stated. The act should include a section which says that advocates will help to protect individuals from abuse and neglect.
The definition of "vulnerable person" in section 2 also fails to protect the most vulnerable people in Ontario. It states that a vulnerable person is someone who has difficulty expressing his or her wishes. It does not include those who are unable to express their wishes. It should include the wording, "those who have difficulty or are unable to express their wishes."
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Mr Corini: One of the other things we did not find in the act is provision for appropriate evaluation of community-based advocacy efforts by the commission. Tied to this is the issue of funding. The commission may fund a community advocacy group, but there is no provision that spells out when the commission might consider defunding a group, including a process for doing so. We recommend that a section be added which allows the commission to defund an agency, group or organization providing advocacy services which includes the process and condition under which this may occur. Advocacy services must be at least as accountable as other service providers.
There is also no duty on the minister to act upon the annual report. Subsection 11(2) has the minister tabling the commission's annual report in the Legislature. It places no duty upon the minister to pursue unresolved concerns. Many annual reports are tabled in the Legislature and then forgotten. It would be useful to consider placing a duty on the minister to act as the commission's advocate with government by placing a duty upon her or him to pursue unresolved issues which pertain to government and which remain unresolved from the commission's annual report.
There is also no provision for research. I believe that Ontario is probably breaking ground in terms of advocacy legislation, and because of that it would be extremely important for Canada, not just for Ontario, perhaps even in the international community, that the provision for research be entrenched in the legislation. Since Ontario is on the leading edge in providing advocacy services, it seems reasonable that the act should speak to the need for research in this area and make comprehensive research possible, subject to certain safeguards. We recommend, therefore, that a provision be added to the act which encourages research and sets out the conditions which must be observed in order for it to occur.
There is also a potential for abandonment in a coercive situation. If a vulnerable person indicates that he or she does not want an advocate to stay, subsection 21(3) places an obligation upon an advocate to leave. While this is important in the protection of the client's right to self-determination, there is a danger that the client is dismissing the advocate because of coercion. This section does not adequately take into account the symptoms associated with the Stockholm syndrome, in which individuals who have been abused or battered sometimes identify so strongly with the perpetrator in order to survive that a hostage mentality develops and they act according to their abuser's wishes. It also does not take into account the possibility that an individual is being threatened or coerced to get rid of the advocate. More thought should be given to this section so that the act does not abandon the individual in this situation.
We have seen that situation clearly in Cedar Glen when one of the residents was acting as an enforcer for the owner and in fact was the one who was doing most of the beating of some of the residents. He obviously was acting under the coercion and threat of the owner. We have seen that kind of situation as being a very real one in many situations in group homes and places where there is coercion and no possibility for people to find out or go in and advocate.
Mr Tennant: Subsection 24(3) drives a wedge between the advocate and client and infantilizes the client. It makes the client captive to the wishes of his or her doctor, thereby undermining the client's right of access to information and self-determination. Clients should have the right to see their files and correct them if necessary. Clauses 24(3)(a) and (b) should be deleted.
Section 25(1) gives access to records of a person "living or dead" held by a facility. This section should be amended to include records held by the coroner's office. The schedule, section 17, at the back of the act lists a number of facilities governed by various acts to which advocates should have access. Several acts are missing. They include the Education Act, the Health Disciplines Act, the health services consent act, the Public Health Act, the Substitute Decisions Act, the Coroners Act, the Ontario Human Rights Code, the Ombudsman Act, the Legal Aid Act, the Public Trustee Act, the Family Benefits Act, the General Welfare Assistance Act, the Homemakers and Nurses Services Act, the Indian Welfare Services Act, the Vocational Rehabilitation Services Act and the Health Facilities Special Orders Act. Access may be necessary to records held under the authority of any of these acts if effective systemic advocacy is to occur.
Mr Corini: We just circulated a memorandum that is supposed to be an addendum to our submission to this committee. APSAO has noted that subsection 1(1) of 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, defines the term "advocate." Clause 16(5)(a) sets out the duties of an advocate, which are to meet promptly with the person to whom the certificate of incapacity relates and to notify him or her of the certificate, explaining its significance and explaining the person's right to refuse and, finally, to ask the person whether he or she wishes to refuse it.
This association is of the strong belief that an act administered by one ministry, in this case the Ministry of the Attorney General, cannot dictate what employees of a commission of another ministry, the Ministry of Citizenship, must do. The role set out for advocates in clause 16(5)(a) of Bill 108 is not, in fact, an advocacy role but could easily be performed by a clerk. It is the role of an advocate to align with the client and act on his or her instructions, not as an emissary of a government or quasi-government agency.
This association is therefore recommending that the rights adviser role be funded by the Ministry of the Attorney General and administered through the legal aid system. The original funds voted by the cabinet for the Advocacy Commission must be used for advocacy, and there should be no encroachment upon these funds by the Ministry of the Attorney General for the purpose of funding rights advisers.
Clause 7(1)(d) should be deleted from Bill 74, An Act respecting the Provision of Advocacy Services to Vulnerable Persons, since it takes control of what advocacy services are to be provided away from the Advocacy Commission and places these duties in the hands of another ministry, which wishes to create advocacy functions without providing the financial resources to do so.
This association notes that Bill 109 has the same problem. Subsection 1(1) of An Act respecting Consent to Treatment also defines the term "advocate." Subsections 10 (1) and (2) demands that an advocate meet with a person concerning a finding of incapacity by a health practitioner. It is obvious to this association that the rights adviser duties in both Bills 109 and 108 are thinly veiled attempts to totally undermine the real duties of an advocate as set out by the Advocacy Act. We are asking the committee to propose amendments to all three acts which will place rights adviser duties within the purview of the legal aid system, not the Advocacy Commission.
Thank you very much for your time.
Mr Sterling: This is the third group that we have heard from the Adult Protective Service Association. Your briefs have been basically similar. In terms of the daily lives of the 177 workers, how much time is spent on advocacy and how much is spent on other matters?
Mr Corini: It varies. It depends very much on the area where the advocate operates and where he is providing services. It also depends very much on the sponsoring agency, how much freedom that sponsoring agency will allow the APSAO worker to perform advocacy duties. It would depend, of course, on the needs of the people to whom the advocacy duties and responsibilities are applied, specific individuals.
We have had some data collected in the past in terms of how much time is dedicated, but I would say it is not consistent throughout the province. There are many variables, as I said, according to many different situations. I think we can say that adult protective services workers, taking into consideration all I have said, are providing between 20% and 40% of the total time for advocacy.
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Mr Tennant: If I could add to that, as Gianni said, one of the variables in regard to that is availability of services for that individual who is already in that area. In a time when we are looking at financial constraints, services are having a great many problems providing for the people in their areas. In light of that, there is an increasing need for advocacy.
The other thing we have to remember is that the clientele we are working with quite often have not had the opportunity to speak and act on their own behalf, and that is a learning experience, where, say, maybe someone has been living with mom and dad for a lot of his life. Suddenly either mom or dad dies and a medical crisis comes into effect. All of a sudden this person is expected to make a big life decision -- where does he want to live next? The expectation of that is a little unreal. Therefore, involvement of APSWs in developing a rapport with that individual prior to these crises is crucial to that individual having the trust in an advocate, which is certainly something that is crucial in interaction between an advocate and an individual, that trust in knowing that what that person is and the variables that person is presenting to him are things he can believe in and make his choices on.
Mr Sterling: The next is just a comment. In part (g) of your recommendations, page 5, you say there should be a duty placed on the government to respond. I think there is a duty on any responsible government to respond; whether or not it chooses to respond is the question. I, as a member of the provincial Parliament, do not have the right to demand a minister in the Legislature to respond to a question that I might ask him or her on the floor of the House. Any other citizen in the province does not have the right to force a minister or the government to respond. Do you suggest the commission should have a power that nobody else has?
Mr Corini: I think that is a consideration, because otherwise systemic advocacy will be grossly undermined, in my opinion. We see today quite a few problems with the Office of the Ombudsman and sometimes with the Human Rights Commission when they make a recommendation to government during an investigation. Again, this is a new act and we are breaking new ground. I know it is also a new kind of concept and philosophy, and therefore I think that in order for us to believe that the Advocacy Commission will have the power to then influence systemic changes, there should be some responsibility on government to respond to some of the commission's findings when it has been ascertained that there is some lack of services in certain areas. If there is no provision for government to respond, then I would think many of the changes the commission may be recommending would just be left unattended. I think that is an area that should be addressed in some way.
Mr Sterling: I just find the suggestion strange to our system of government. I am not getting away from the point that any responsible government should respond and that it is subject to the political consequences of not responding. It is difficult sometimes to get a response, and sometimes, quite frankly, as a government it is difficult to respond because it is limited in its resources.
I have a great deal of concern about the Advocacy Commission. As someone who is concerned about accountability within the system and to the people of Ontario, I am very much concerned about placing an Advocacy Commission out there on an island in the middle of the ocean, not being really accountable to anyone. There is nothing within the Advocacy Act which really allows a disgruntled client or an opponent of the advocate to complain to anyone what an advocate might or might not have done in representing the client. Would you care to comment on that?
Mr Corini: Yes. I think that is a valid point and that is something that, in fact, we have been stressing in terms of -- for instance, in certain areas of the province the APSW program has been under attack. That is why we said that there should be some duty on government to respond, because we never had any responses from our concern. We have been fighting to have those kinds of responses, and we are still waiting after years of concern expressed and not responded to.
One of the things we found -- our program is under extreme pressure from local areas -- is that we are an amalgamation of services. For instance, in the north in Sault Ste Marie and Thunder Bay, service is amalgamated. That is, all social services in that specific area were under one umbrella organization, and the APSW program was also placed under that big umbrella organization. Therefore, if a client had some dissatisfaction about the services provided he did not have anywhere else to go because the services were provided by just one global entity.
We certainly are sensitive to this area and we feel there should be a system to address the concern of individuals who may have their needs not addressed or not met by an advocate, therefore being able to access some alternative services either on a voluntary basis, which the act provides, or some other ways. We agree with --
Mr Sterling: Can I just ask one final question?
The Chair: Very quickly.
Mr Sterling: The Ombudsman, the information and privacy commissioner, the election expenses officer, the chief returning officer of the electoral system, all report to the Legislative Assembly directly. Do you think it would not be more appropriate that the Advocacy Commission would report directly to the Legislative Assembly and not to a minister of the crown?
Mr Corini: I can respond by just making a comment that the more distance there is between the commission and government the better it is in terms of its independence.
Mr White: Thank you, Mr Tennant and Mr Corini. I have for many years worked with adult protective services workers. In my last employ there were two across the hallway from me at Durham region, and I am very familiar with their role and your role. Frankly, I am amazed at what excellent advocates you are. Certainly the women whom I have worked with have been excellent, given the circumstances they are in. As you mentioned, when you are funded by the same ministry you are under constant pressures that are subtle sometimes, sometimes not. Even though you are funded through a different agency, through a different source, those pressures still exist. That point you make is a very important and significant one.
It only makes sense that there is that separation. As you were saying, Citizenship is at least one step removed from the front-line ministries. But I understand that one of your principal concerns with the Advocacy Commission is what you outline here: It does not rationalize the existing advocacy system or recognize the tremendous role you have had in the front lines in terms of advocacy. I think your talk and your points have been very succinct, very pointed, and very emblematic of the fact that you are in the front lines in that area. Does the act itself preclude your being involved, or is that a policy decision?
Mr Tennant: We feel at this point it pretty clearly does, and that the APSW program is not being transferred under this act as the patient advocate program is.
Mr White: It is not. But that is a policy issue, not an issue about the act, though, is it not? That could happen in the future.
Mr Tennant: Lots of things could happen. One of the basic problems of the APSW program to date is its lack of solidarity in legislation. The APS program is not legislated. As you are saying, yes, it could be. It could have been for the last 15 years that the APSW program has been around, and in fact what we have seen is a program that is being taken apart effectively in the province, not a program that has been given strength. For people who are not aware, in Sudbury and Manitoulin Island the area office for the Ministry of Community and Social Services has seen fit to no longer have APSWs in that area. So, in effect, people with developmental handicaps in that area no longer have an advocate. Here we are with a program that is supposed to be provincial in scope but, in fact, area offices are doing as they see fit.
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If I could take a moment of your time, on November 6, 1991, I wrote a letter to Elaine Ziemba in regard to this, and it was in response to her being at a conference of APSWs and comments that she made:
"Listening to your comments only reinforced my feelings of the need, both rationally and fiscally, for the APSW program to be included in the Advocacy Act.
"How can 175 to 200 advocates you're proposing even scratch the surface of the 300,000 you stated may qualify for these supports?
"Given the expectations being placed on the new system from the health sector alone, expecting informed consent, how will these proposed advocates ever keep up?
"Impossible! Doomed for failure!
"For 15 years the APS program has been attempting to support the 2% of the population of Ontario recognized as developmentally handicapped, approximately 54,000 people. With 170 workers in the province, there are still long waiting lists for APS support.
"By transferring the APSW program to be included under the Advocacy Commission, you will have approximately doubled your number of advocates for little cost as the APSW program dollars are already allocated through MCSS.
"This makes good fiscal sense and ensures a conflict-free support and continuity to those people who are developmentally handicapped."
Mr Malkowski: I just would like to clarify. The Advocacy Commission and the advocates themselves will be arm's length from the ministry; the Advocacy Commission will not be providing services. So therefore there should not be any conflict of interest. As well, the advocates may be able to support the current work that is going on of advocates already so that they can help achieve the goals the advocates have already established.
Another APSW group or other groups who provide advocacy services have not seen the creation of the Advocacy Commission as duplication of services. So do you agree to those couple of points?
Mr Corini: We do not see it as a duplication of services at all. As a matter of fact, the reason that the APSAO has been asking to be transferred either to the Advocacy Commission or to the office of disability issues as a parallel support to the Advocacy Commission is to support. We do not see any conflict in that.
Our concern at the present time, one, is that the commission, as it is set out today, will have great difficulties in covering all the demands that will be placed upon advocates to respond to all the needs for all the people in the province who need advocacy services. The other is that fiscally I think it makes sense to transfer the program that is already operating as an advocacy system in a sense, but with a lot of problems because of the conflict of interest, in support of the Advocacy Act. That is what we are saying. We do not see a conflict between the two, but actually one supporting the other.
The Chair: Mr Tennant and Mr Corini, on behalf of the committee I would like to thank you for taking the time out and giving your presentation this afternoon.
PAT CHEFURKA
The Chair: I would like to call forward our next presenter, Pat Chefurka. Good afternoon. Could you please identify yourself for the record, and then proceed.
Ms Chefurka: Thank you. Yes, I am Pat Chefurka from a farm near London. I have a scientific background, a lot of political involvement and experience both personally and through friends with dysfunctional persons. Our ad hoc group of a psychiatric nurse, Sonia Lee Jackson; a nurse with a schizophrenic daughter, Charlotte Lefcoe; a lawyer, Andrew Bolter, and myself worked our way through this fascinating and confusing legislation, spurred on by our frustrations and feeling of helplessness vis-à-vis some specific problems with the mentally ill.
Bills 74, 108 and 109 all start with definitions, but there is one definition that is missing: a human is a rule-creating animal.
The purposes as laid out in Bill 74, section 1 are very noble and we appreciate the difficulties in drafting legislation to cover the whole spectrum from physical through chronic to psychotic illness. We also appreciate the need to protect the rights of the voluntary patient who may need supportive assistance for a short time. However, what we find here is a system that is far more complex, bureaucratic and expensive than we feel is necessary, and, for seriously mentally ill people, is distinctly counterproductive.
With regard to the proposed advocacy legislation, we wanted to say, "Scrap it and start again." But perhaps something along the line that was proposed by the Canadian Bar Association that would be reactive rather than proactive might be the way to go. Court applications should be avoided as far as possible in order to permit quick response by families and/or those with power of attorney.
With both the Substitute Decisions Act and the Consent to Treatment Act we feel strongly that mental illness should be dealt with separately from physical and chronic illness. It is imperative to recognize the difference between decisions made by a healthy, functioning brain and those made by a dysfunctional one.
Before we get to specifics, I wanted five minutes to deal with a picayune point that bugs me: the flagrant misuse of commas in the legislation. In almost every subsection that has an (a), (b) and (c) that continues the sentence, there is a superfluous comma.
In the Advocacy Act, Bill 74, subsection 7(1) states that, "The commission shall, (a) promote respect for vulnerable persons and for their rights, freedoms, autonomy and dignity." Two of the things that we thought were very important that were missing there were the health and safety of the vulnerable persons.
These bills continually emphasize rights and freedoms, but as Fuller Torrey writes in the Wall Street Journal, "The freedom to be insane is an illusory freedom, a cruel hoax perpetrated on those who cannot think clearly by those who will not think clearly."
The current legislation and the proposed legislation require that no care be provided unless the person actively seeks treatment or is clearly dangerous -- physically dangerous, that is. Harassment does not count. Since people with schizophrenia and other serious mental illness typically refuse treatment, it prevents families from doing anything. For those families, nothing is the hardest thing to do.
This freedom also impinges on the freedom of others. There is a big guy named Gerry in his 40s who has decided that the hall in front of my friend's office is a good place to call home. He uses the stairwell as a urinal, and he craps whenever and wherever. She calls the police. They remove him, but they cannot commit him to hospital. He has not hurt himself or anyone else. So a few hours later he is back. Do we not have a principle in this country that says, "Your freedom ends where my nose begins"? Does society have to yield selflessly to the sometimes selfish desires of the mentally ill person?
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Another fallout is that an estimated 30% to 40% of homeless people are such because they are seriously mentally ill. Many of them have disability pensions, so they can afford an apartment, but they have problems functioning well enough to get one. They often lose their money and are frequently victimized by others -- for example, getting $3 in change from a $20 bill when they bought a $2 item. Sometimes landlords are loath to rent to them because of maintenance problems. Some who do have an apartment often will not go back to it because they associate it with the voices they hear that they want to avoid. My friend's daughter, Martha, pulled ceiling tiles down to get at those voices, and the only food in her apartment one day when I was there was a bag of onions. The fact that she cannot care for herself does not permit her being committed to treatment.
Our aim should be to get such people off the streets and into treatment. The proposed legislation mitigates against this because (a) it is so difficult to get these people to a doctor or a mental health facility voluntarily, and (b) on those occasions when you do, the advocate comes along and tells them it is their right to refuse treatment, period, game over, back to the street or to devastated families.
General comments about the Advocacy Act:
1. It is hugely expensive: the commission, the advisory committee, their staffs, offices, services, the army of advocates and their offices and services. Our estimate is that 50 to 100 advocates might be required for the city of London, which at $30,000 a year might mean $2 million to $4 million. This is guesstimating, I admit. For a population at any particular time of 6,000 people in facilities in London, I do not imagine you could figure on an advocate being responsible for more than 100 people at one time, so you are talking 60 people, according to that arithmetic, acting as advocates. I do not know if the government or any of the civil servants have figured a cost factor, but we figured that populationwise London represents a thirtieth of the provincial population, and then you are talking $100 million or so. We say, would there not be a greater bang for those bucks if they were spent on treatment programs and care givers? Many could then return and become contributing members of society.
2. It is hugely cumbersome. Who is going to write -- or read -- all the reports required, the requests for consent, get the warrants from the justice of the peace, do the record searches, scrutinize all the advocates, hire all the lawyers and organize court time, judges and staffs? Will everyone in the province have to arrange a power of attorney for themselves? One of my lawyer friends says, only partly in jest, that every new act guarantees each lawyer in the province another $100,000. Dr Brian Hoffman of Mount Sinai Hospital says that if you want to certify and declare someone incompetent, by the sixth week you have filled out 45 legal forms. This of course is under the current legislation. Will it be different under the proposed legislation?
3. It is difficult to require sufficiently high standards of training and integrity for advocates, most particularly for those who are volunteers. How would confidentiality be policed? After all, even the professionals screw up.
4. Clause 7(1)(b) provides that the Advocacy Commission act as a lobby group, a function we question as being appropriate for a publicly funded body.
5. Sections 16 to 23 on rights of entry give advocates more power in this area than the police have. We wonder if that is appropriate, particularly if there is a large volunteer sector.
On the Substitute Decisions Act, an interesting observation off the top is that there are twice as many sections dealing with property as dealing with the person. What does this tell us about our society?
What we have here are examples of what we felt were inconsistencies and confusion in the proposed legislation, and I have a number of examples here.
In the first example, subsection 7(1) says a continuing power of attorney gives authority that may be exercised during the grantor's incapacity to manage property, but section 15 says that if the grantor ends up in a psychiatric facility -- in other words, he is incapable of managing property -- the power of attorney is out and the public guardian and trustee is in. Then you go to subsection 17(1), which says the person with the continuing power of attorney may apply to the provincial guardian and trustee to become the guardian of property, and then subsection 17(9) says the guardian has to manage the property in accordance with a management plan. A management plan? Who makes it, who monitors it, who reads the reports, who acts on it? Why not avoid the whole schmear by leaving the original power of attorney intact and with some authority?
By now you will realize that we are coming up with a lot of questions. I hope you are all paying close attention. I will expect you to turn in your answers at the end of the period.
Mr J. Wilson: Just the government members.
Ms Chefurka: Example 2: Subsection 9(3) deals with a case of continuing power of attorney which comes into effect when the grantor becomes incapable of managing property. If it does not also specify a method for determining the grantor's incapacity -- and how many would? -- then it only comes into effect when there is a certificate of incapacity. Subsection 16(1) says an assessor may perform an assessment. Subsection 16(2) says the assessment shall not be performed unless the assessor tells the person of his right to refuse to be assessed. What schizophrenic in his right mind would permit himself to be assessed?
Example 3: Suppose the hurdles in example 2 are overcome and a certificate of his incapacity is issued. Along comes, "promptly," an advocate who tells the person he has the right to refuse the statutory guardianship. Now what?
Example 4: Subsection 20(2) says statutory guardianship is terminated by notice to the guardian that the patient has been discharged -- now, discharged does not necessarily mean cured -- or simply by notice given by the person -- again it does not indicate whether he is cured or not -- to the guardian. All an advocate needs to hear is that the person wishes to terminate the guardianship.
On to part II: Part II seems to lack an appreciation for current and future advances in the field of mental dysfunction. Developments in microsurgery and laser surgery need to be accommodated. Prohibiting research might mean never finding the route back from incapable to capable.
Some more examples, number 5: I do not get all this business about validation. Subsection 47(9) says that a power of attorney for the person is not effective until validated. Subsection 49(1) says the attorney may apply to the PGT to validate the power of attorney for the person. But in Bill 109, sections 13 and 16 say the power of attorney instructions are valid even if the power of attorney has not been validated, and clause 49(4)(c) in Bill 108 says the advocate tells the person that he has the right to oppose the validation.
Example 6: Subsection 55(1) in Bill 108 says, "An order appointing a guardian of the person shall include a finding that the person is incapable," but how is this to be obtained if the person refuses to be assessed, which is allowed in the act?
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Example 7: Subsection 63(3) requires that the person having full guardianship "make decisions on the person's behalf that are likely to promote the person's wellbeing." However, if getting the person into a psychiatric facility would be best and the person objects, then section 56 says that he cannot be put in. What on earth are we going to do with our friend Gerry?
Remember all the questions about the management plan? They all apply equally to the guardianship plan. It strikes us that Bill 108 has a high potential for using up a lot of court time to little purpose. Are the courts the best forum for making these determinations?
On the consent to treatment bill, example 8: Under section 10, when a doctor finds a person incapable, she must tell the person -- in writing, yet -- he is entitled to meet with an advocate and to apply to the Consent and Capacity Review Board. Under section 10(2) the advocate comes and tells him the same thing, and under subsection 10(5) the advocate helps him get a lawyer. Meanwhile, the doctor cannot do anything until the board makes a decision, and if it is appealed, the appeal is dealt with. Even if the decision is not appealed, the time for an appeal must elapse. What delay does this represent before treatment can begin and where would the mentally ill person be all this time?
Schizophrenics are particularly likely to take up an advocate's suggestion that they can apply to the review board, and the board has the capacity to overrule a health practitioner's finding of incapacity. Not only does this result have dubious validity, but in my friend's experience with her daughter Martha it took a three-hour hearing attended by her psychiatrist, two lawyers, a board member, a mother, a brother and two witnesses she called to speak on her behalf. No wonder psychiatrists are prone to discharge patients rather than go through this process.
The possibility exists that if a person in the early stages of schizophrenia were taken to a hospital and no advocate intervened, then he might be more likely to accept treatment. In any case, we do not want to see the advocacy and review process undermine or sabotage the treatment team for the seriously mentally ill. We also do not want patients and health professionals in an adversarial position.
If dollars can be saved on the advocacy and substitute decision systems, would it not be wonderful to have more support for families, more people like social workers who could make follow-up visits to discharged patients to make sure they were all right, staying on their treatment program and not on the street?
When you review the legislation, please also remember the rights, needs and safety of family care givers as well as of vulnerable people. Something less expensive, less bureaucratic and more functional for the mentally ill is what we hope to see.
I have included a few specific points in an addendum that I do not think I have time to get into here, but presumably somebody will look at them in conjunction with legislative review.
The Chair: Thank you very much. I am sure they will all be looked at by each of the members. Questions and comments?
Mr Poirier: Between the theoretical and the practical, you who work in the practical obviously found a lot of places where you have a lot more questions than you have answers, and I cannot blame you. I just hope that Gerry does not end up getting elected to the Legislative Assembly or we are in deep trouble.
I want to thank you for bringing this forward. I just hope that legislative counsel and the government will take that into account and put themselves in the shoes of practitioners and people who have to deal with it in the everyday life of this. How does the intent translate, and try not to mess up the valuable time you have and the resources you have to put to serve and help and all the good faith you have to help the people who are your clients? I thank you for bringing it forward. I can only say we have heard these arguments many times before and I am sure it is not the last time we are going to hear this. Thank goodness you took the time to come forward to bring this, and we can only say to them, "Deal with this."
Mr J. Wilson: I do not have any particular questions either, except to say that a number of the examples you brought forward are issues we have brought forward and other witnesses have brought forward also.
Ms Chefurka: I am not surprised that you have heard some of these same things before. My only hope is that if you hear them often enough, changes will get made to accommodate these kinds of problems.
Mr J. Wilson: It is certainly needed around here. Repetition is needed to make changes. I can attest to that, having been in on the health professions legislation. The more the merrier. Your good humour in bringing this forward, whether it was intentional or not, is appreciated on a Friday afternoon. I am almost tempted --
Ms Chefurka: I am surprised to see anybody here.
Mr J. Wilson: We are too.
Mr Poirier: What perception do you have of us?
Ms Chefurka: TGIF extends through the society.
Mr J. Wilson: That is right. It could take a while. I am almost tempted to ask the parliamentary assistants to respond to your examples, but that may take a while and I will let them off the hook. It is within our authority to ask for a response to all your questions from legislative counsel or somebody, but I will not. Needless to say, I hope the government will take the time in its five minutes to respond anyway to a couple of the examples that are particularly horrendous.
The Chair: Obviously we have struck a chord here. Each of the PAs wants to make a comment or ask a question.
Mr Wessenger: I would like to get your perspective on the record here with respect to this whole question of treating the mentally ill, because I think that is really the area you have raised. It seems to me we have two values that are very important with respect to this question of how we treat those who are perceived to be mentally ill.
First of all, would you recognize the aspect that is very important, that we protect individual rights and freedoms in our society? Would you agree with that?
Ms Chefurka: Yes.
Mr Wessenger: Also, I think it is fair to say that we have as a principle that if people are ill, we should try to get them better. I think that is a principle too and I think you would agree that legislation should try to balance those two views.
Ms Chefurka: Yes, distinctly. What I am worried about --
Mr Wessenger: Would you also agree that in the question of weighting those values, individual freedoms and rights have to take precedence over treatment if there is a question of doubt?
Ms Chefurka: What bothers me is that there has been a switch from the right to treatment to the right to refuse treatment even if that decision to refuse treatment is made by the same brain that needs treating. To me it is complex. My lawyer, Andrew Bolter, could not be here today. I wish he were, because he is able to cope with questions like that a little better than I can.
I know it is difficult and confusing. I am putting out my druthers. I want something that permits mentally ill people to get treatment.
Mr Wessenger: I understand your perspective in wanting to have mentally ill people to get protection, but let me say we have also heard from members of the Ontario Psychiatric Survivors' Alliance, where people have been misdiagnosed with respect to the question of schizophrenia, particularly women who have been sexually abused. I have encountered that much in my law practice as well.
The other things is that there is a great failure rate with respect to the whole area of psychiatry, and I think that is fair to say. With all that aspect, it is very important that we have protections with respect to individuals' rights because of people who have been abused and have been victims of the system.
Ms Chefurka: Yes. There is no doubt that in the past people have had dreadful experiences through the system. The sympathies are all there. My hope is that we can improve our treatments and treatment systems. I also hope that we get more supportive systems for help for people in the community who have gone through a program and are back into the community, follow-up services, services for families. For example, the families, as a rule -- not always, but as a rule -- are the people the most interested in the mentally ill person. Yet they are also victimized by these same mentally ill people. Again, you have to balance some rights here.
Mr Wessenger: If I just might follow that up, you would agree that competency is the issue, right?
Ms Chefurka: Yes.
Mr Wessenger: It is really a question of whether a person is competent. If you determine they are competent, they should be able to make their own decision.
Ms Chefurka: Yes.
Mr Wessenger: And if they are incompetent, somebody else --
Ms Chefurka: But then who is making the decision? Is it a group that does not have the appropriate professional background or is it a court?
Mr Wessenger: Do you have more confidence in psychiatrists to make that decision or do you have more confidence in an independent body? That is a question --
Ms Chefurka: I would not touch that one with a 10-foot pole.
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Mr Wessenger: I think the perspective of this legislation is that we have an independent --
Ms Chefurka: It very much depends on what people are involved in doing the assessing and decision-making.
Mr Wessenger: What I would suggest in this legislation, where you have a situation where an individual does not have capacity and it is determined he or she does not have capacity, is that it improves the situation with respect to treatment of that individual.
Unfortunately you were not here the other day. There was a great deal of discussion with respect to the Substitute Decisions Act. In effect that act creates the possibility of a guardian being appointed to determine the treatment for a particular individual. Like your Gerry situation, a guardian could be appointed under the new legislation, there could be difficulty and he or she could prescribe a treatment process. I would suggest to you that if the person is found to be incompetent, the legislation allows somebody to be admitted to hospital by the substitute decision-maker.
Ms Chefurka: We would like to see alternative systems to what exist right now in any case that make it easier and less legislatively complicated to get people like Gerry in for treatment and get him back to being a contributing member of society.
Mr Winninger: Mr Wessenger certainly stole a bit of my thunder, so I will not have as much to say as I originally intended to.
You raise a number of legitimate points and some of them can be answered now. Obviously, due to the constraint of time, some might have to be answered at a later time. You raise one point, with regard to example 6 on page 7: How can you obtain an assessment if the person refuses to be assessed? I would just direct you to read section 76 at some point.
Ms Chefurka: I already did. But again, it requires the legal route to get through section 76 to get the person to hospital. What I was hoping you bright people would come up with was a way to get people in for treatment quickly and with justice, fairness and dignity and all the rest of it but without having to use the time delay and the complications of going the legalistic route.
Mr Winninger: Since you were not here over the last couple of days, you might at some point want to review Hansard with regard to some of the enhanced powers the substitute decision-maker will have that he or she would not have enjoyed under current legislation, as Mr Wessenger said, to have a patient admitted to a psychiatric facility on a deemed-to-be-voluntary basis, but also to consent to that person's treatment.
By making this vehicle of substitute decision-making guardianship available, we actually provide a tool for the families of schizophrenics to deal with this revolving-door situation, where once they get the patient in and the patient is given medication and starts to improve, he or she checks out and stops taking medication. With a continuing guardianship order, you obviate that possibility until the guardianship might be formally terminated, so there are some tools that would give solace to the families of people you have described.
Mr Malkowski: A person with schizophrenia and the family of course are both impacted. It is a tough situation. I think that is a given.
Psychiatric survivors and schizophrenics have come to me and talked about their experience. A lot of people have been falsely diagnosed as schizophrenic. They can receive treatment that is not helping for many years and in fact makes them worse.
Some of these people were victims of sexual abuse. Some of them had some other damages done through child abuse and neglect and those kinds of things, and the professionals then labelled them schizophrenic and they were forced into treatment against their wishes. Not all schizophrenics are labelled like that, although there are some, according to some survivors of some of these psychiatric institutions we have heard from.
I wonder how you account, then, for their support? What about those people who have been falsely labelled schizophrenic and who are in an institution? How would you then support them and get to those people? Aside from true schizophrenics, how would you deal with something like that?
Ms Chefurka: Legislatively?
Mr Malkowski: Yes.
Ms Chefurka: That is where I get into --
Mr Malkowski: Specifically, in terms of legislation like Bill 74, that legislation we feel will help people who have been wrongly labelled and are in institutions now.
Ms Chefurka: The presentation I was here for was the Canadian Bar Association's one. I thought at the time that what they were proposing did provide that kind of protection. They were talking about situations that needed some kind of attention and review, and unfortunately I did not get a copy of their presentation, so I cannot tell you specifically what was in it or whether in fact it does answer your question, but at the time I remember thinking, yes, that kind of thing would guard against this sort of complication.
Mr Malkowski: So it would be fair to say you would agree that the Advocacy Act may assist those people who have been wrongly diagnosed and then are forced into treatment? Would you feel this would help that group in society?
Ms Chefurka: Yes. You see, I did not go into all those areas where I agree that the system would be helpful. What I am aiming at is getting the change I feel could be improved, but yes, there are lots of cases and uses for advocates. Just getting a system of advocates that is not too complicated and bureaucratic is the aim I am after.
Ms Carter: I think you put one side of the debate we are having very well, and I wish you had been here to hear some of the other side, because it is very moving and very cogent.
I think we should emphasize that the purpose of Bill 74, the Advocacy Act, is to tip the balance, if you like, in favour of the individual, the person concerned, in this case the vulnerable person, the person who may or may not be mentally ill, and to make sure that his or her interests are protected.
I think maybe the most powerful way I can put this is to say, if somebody in your family said you were incompetent and tried to have you committed, for whatever reason -- maybe because you were a nuisance or to get control of your estate or whatever -- would you not want there to be very strong checks and balances in place to make sure that process was not too easy for them?
We can look at this either way around, and I think one point here is that there is a very big difference between looking objectively at psychiatric treatment, what happens to patients in mental hospitals and so on, and the subjective view of that. I have not undergone that, so I cannot give you the subjective view, but the people who have undergone it give a very consistent view and it sounds very different from that of the person on the outside saying that it is to their benefit to go in there and be treated.
You were talking about things maybe being better in the future than they have been in the past, but it does not sound from what we have heard as though those abuses have been, so far, overcome. We still have medicines that work in making a person more tractable, if you like, but which subjectively are very unpleasant, which have long-term side effects which are very distressing to the person and so on. So there really are two sides to this.
On a more specific point, you said that the rights of entry under the act are more powerful than those the police have. I think the point there is that the objective is very different. The police, if they go into a home, for whatever reason, can do very drastic things when they get there, like taking somebody's child away or arresting somebody or whatever, whereas the purpose of entry of an advocate is only to be able to communicate with some vulnerable person who is on those premises, that is all, and to find out, hopefully, what their wishes may be and to communicate those wishes. If that person does not want them there, he can ask them to leave and that is the end of it.
Also, when you talked about a vast number of advocates being needed, say, in London only, I believe the total suggested number, other than those who might come under independent voluntary organizations, is only 150 for the whole province. So there is not this army that is about to overrun the province and deplete the provincial treasury.
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Mr Winninger: But 100 of them would be in London, according to you. How many would be in London -- 60?
Ms Chefurka: There would be 60 for London. It just seemed to us that in terms of the numbers in the province, if that was the total number for the whole province, they would be overworked like crazy. How could they be available for 24 hours a day and this kind of thing if there were only that small number in the whole province? I do not know. I have nothing firm to base that on. Maybe some experience will be needed over time to find out what is an adequate number. Looking at it from our lay point of view, I could see a huge number being required to fulfil all the functions as laid out in Bill 74.
Ms Carter: Which is, in a way, to say they are badly needed?
Ms Chefurka: No, it is a way to say that maybe the legislation is more complicated than it needs to be. I know the support is still there for people who still need it, particularly the speech-handicapped ones and so on. Sure, they need to be treated properly; they do not need to be treated as if they are mentally underdeveloped just because they have a speech difficulty. Sure, advocates and interpreters and all this kind of thing are going to be needed. But I am hoping that you and the staff will come up with something that is less complicated, less expensive and more effective for the seriously mentally ill.
The Chair: Ms Chefurka, on behalf of the committee I would like to thank you for taking time out this afternoon and giving us your presentation.
Mr J. Wilson: While we are changing presenters I have a question for the parliamentary assistant. Given your remarks just now and Mrs Carter's, you said that psychiatric services in this province have been a failure. Mrs Carter made it clear that the intent of this bill is to tilt the balance in favour of the vulnerable. I would like to know on what basis the Ministry of Health or the government says that psychiatric services in this province have been a failure. We are going on the premise, I think, that -- and I am waiting to be proved wrong -- the stories we read about in the paper are the norm.
I happen to know a number of people who have had psychiatric services, who are very well-functioning people in this society today, who in their youth or something may have required services and indeed shock treatments. There are a number of success stories. I want to know what studies are around -- I would be happy to read them myself -- as to what extent the system is failing. That would give me an indication of what the need for this legislation is, rather than taking psychiatric survivors' testimonies as being the norm, because I know it not to be in my own personal experience. It seems to be the basis on which this legislation is premised.
Mr Wessenger: I think that is a good request. Certainly from anecdotal evidence -- we do not have the statistics -- you are quite right. It would be very useful information to have to know to what extent the psychiatric services have proved to have a beneficial effect and those that have been unsuccessful. The success rate would be very interesting to look at and I would certainly ask the Ministry of Health to provide that to the committee. I would like to have that information myself, quite frankly. I think it would be very useful to have.
MELANE HOTZ
The Chair: I will call forward the next presenter, Melane Hotz. Good afternoon. Could you please identify yourself for the record and then proceed?
Mrs Hotz: My name is Melane Hotz. I live in Ottawa. I was the public guardian for Alberta for the last half-a-dozen years or so. I found this process very interesting to watch from there and to return to take it up right here. I am trying not to say, at any moment, "This is how we did it," because it is different everywhere you go. Alberta is, as people are saying, "breaking new ground," and I hope that helps the construction industry so you will have money to pay for this piece of legislation.
Mr J. Wilson: You will never get a development permit.
Mrs Hotz: Right on.
I have given you a summary of my key recommendations for those who have heard these in many forms over many weeks. I really admire the effort and energy you are putting into it. I got a red carnation for coming here today, but I do not know what you have got for all these weeks of work.
In the main body of the report which you have, I am attempting to comment on the three acts that I have had time to study quite carefully. I am not going to talk section by section by section, although naturally that is a temptation. I would like to just address with you some of the things you may expect to happen, and perhaps we should run a lottery on the outcomes and make some more money that way.
You have been studying this for a long time and it is very impressive. But however long you study something as complex as this, it is not going to come right the first time, and you have to go forward with something. The only question is: To go forward with the least risky bits? I am suggesting that some of the things in this legislation are going to take away people's rights prematurely, other things are going to cost a great deal of money in relation to the benefits that they may provide, and that the key role, the formalization of advocacy, when put in place together with the other two bills, may cause you a lot of problems, because as yet it is new territory, it is undefined and perhaps there needs to be some staging.
So here we go. Let's look at advocacy first. It is the thing I know least about, so I will talk about it first.
It should, at its best, reduce the number of guardianships and I would applaud that. As a former guardian, I think guardianship is what everybody should try to avoid as long as is safely possible. In my experience, it is an invasion of people's rights and it reduces adults to the status of children, and once you get under it, you cannot get out.
Advocates therefore have a role, if properly played, to ensure that you do not have to have a guardian unless it is really necessary to act as intervenors and to act as watchdogs on what happens in the community.
The courts are important. There were some comments earlier -- and I am really pleased I was here for the previous presentation -- most of which I heartily endorse. So that gives me double time. The courts are really important.
Physicians have a special relationship with their patients, and their assessment of their patients is properly in the area of consent to treatment, to care by them. To expect functional assessments that attempt to address every part of somebody's life is, I think, too much. They were not trained for it and they have not got time for it.
So my first recommendation is, get your advocacy legislation going first and deal particularly, please, with the issue of non-instructed advocacy. There is a term that was bandied about a few years ago, perhaps in the 1960s: "prisoners of benevolence." Do not make people who are mentally incapable "prisoners of benevolence," because advocates, by their very title, are supposed to do only the best things for people. This can be pretty intrusive, and I think they could be charter issues around an advocate's involvement in non-instructed advocacy.
I also believe from what I see in Ottawa, where I work now with Citizens Advocacy, Community Resources for Disabled Persons and the Council on Aging, that it is very different dealing with people who can participate in what is going on to some extent than with people who are mentally incapable. How you do that is different, and you should know, before you say you are going to do it, how you are going to do it and what the implications are. I am concerned that the commission will be left to deal with this and develop those policies on implementation at the same time as the two other acts that deal with mentally incapable people are in place. Here we go on Valentine's Day.
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The second recommendation I have is -- again, this was fortunately raised before, so I will just echo it -- make sure the commission has some representation of people who are not able to instruct. Otherwise the membership may be persons who are strong advocates for disabled groups who are able to participate, and the others will be shuffled off.
The role of advocates is a very heavy one. I would not like to carry a message to somebody who was apparently incompetent that, "The doctor said you really don't know what's going on so so-and-so is going to decide for you, or you can go to a tribunal if you like." I would not really like to be the one to go and tell an older person that there is a suggestion that he or she should have a guardian to make decisions for him or her. This is going to be very difficult.
On the other hand, the legislation seems to have a catch-all phrase: If a person does not understand, despite the advocate's best efforts, that is all right; they can go away again. Those people are therefore not going to be able to have their own concerns brought forward because it was impossible to communicate with them. Some of the points made by the earlier presenters today raised that very issue: how very difficult it is going to be to carry these difficult messages to people whose ability to comprehend, and the shock of the very situation, is going to run interference.
I do not think you can ask volunteers to do this work. I think it is crass, and it is probably not according to a statute. If two statutes say that advocates have to do certain things, then that becomes a staff role. The comments made earlier that you should separate these functions -- I had not thought it through to that extent -- but perhaps that is one of the problems: the act is trying to do a great deal for people whose needs are different, and the processes need to diverge as they become more formal and more deliberate.
I am concerned. I am sure the drafters know that commission members and advocates will, by inference in the eyes of the public, become involved in court cases. There are a lot of court cases involved in this stuff. Some of them are ridiculous, but some of them are very well taken. Advocates, who are the people visiting, and commission members, who are empowering advocates, are likely to be dragged in. There seems to be no definition. Is an advocate any person under the act? Will there be pressure on advocates to bring forward cases themselves, or will they be specifically excluded from doing so? I do not notice anything in this. So we now have done with Bill l74 -- and five minutes.
Consent to treatment: I am getting to the one I know well. Now we are in the middle somewhere.
Mr Poirier: Watch out.
Mrs Hotz: Watch out? You mean you are going to be after me then?
Mr Poirier: No, no. I am quoting --
Mrs Hotz: I can never get there; I can keep you here till six o'clock before I get there.
Consent to treatment: I know this area well, because the most things public guardians have to do is consent to treatment. When at the end we get to the statistics of what public guardians do -- the exciting numbers -- you will find out about that. Right now I am concerned about the determination of capacity to consent.
I am concerned about these advocates getting involved as well as physicians. I think we all know that physicians are busy people. They are paid for certain procedures. The assessment of capacity, in the way you envisage, is not one of those procedures.
I do not know whether placing advocates out there in the community to carry messages and arrange for reassessments helps either the physician or the advocate or the patient. There was a study in Ottawa where physicians were asked whom they prescribed medication to -- without doubt, tranquilizing medication -- and the ones they remembered least were the older people, how much they gave. They consistently underrepresented how much they prescribed for older people. There is another study that shows that the older you are the less your doctor will talk to you.
How then, if this is the prevailing climate of relationships between physicians and their aging patients or by inference their less competent younger patients, are you going to really expect to get a high-quality assessment of functional competence done?
On the other hand, is it not the business of the professional regulating authority to teach doctors how to gain informed consent and how to deal with patients who are less than competent and old? Do we need advocates out there to keep them honest or to fill in the gaps?
I am not sure also whether a test prescribed by provincial statute is one that will help them or will be accepted readily as an alternative to their own determination for consent to treatment. I do not know, even following the excellent work done by the Weisstub committee, whether there is such a thing as a generic, acceptable test of competence. You have heard many others who have said the same thing. What are you going to give people to do that is going to make you pretty sure they are doing it right; that when they send out that advocate, that message is an okay message? There will be a lot of ramifications if it is not.
Repeated assessments of capacity: It seemed to me, reading it, that the best things are: "Don't make general decisions about anybody. People change; situations change. Therefore, every time you have to test." Again, I know that is the way it should be done in principle, but I am wondering in practice if you can expect all the health practitioners in Ontario to apply a test every time they have doubt about a particular treatment. We might get too many full guardianships as a result. It will be easier to get the whole thing over with. As was said before -- it is a word that can go in Hansard here -- "Let's do the whole schmear."
Administrative procedures: There are lots of them, and who is going to pay the physicians for doing all the stuff? Estimates were done of what advocacy would cost. Has anybody done estimates of what it is going to cost physicians and under what provisions they are going to be reimbursed and by whom?
In Alberta -- there, I mentioned the A word -- the Alberta Medical Association developed a fee scale: $75 to $250 for an assessment. These assessments were done on something called a Form 1 that had about three lines in which to say why, in the physician's opinion, the person needed a guardian or trustee and to sign it off. It took about 15 minutes to complete.
If you knew the patient, $75 was okay. If you did not know the patient or it was a contest, it could go up to $250. If you ended up in court arguing about it -- I remember one that cost about $90,000 by the time everybody got in with his assessments of the situation. I am concerned about legal costs because the provision is for a legal aid certificate and otherwise you pay yourself.
There was also a question as to whether Alberta health care covered these third-party examinations. I presume you have worked out already that Ontario health care will cover all these procedures, because there was some concern that it might not.
So I am suggesting you review everybody's role in terms of consent to treatment with a view to simplifying, making sure who is responsible for what, and then, in the best of all worlds, it is going to stop a lot of guardianships, and for that I applaud you.
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Let's get on to an issue that was dealt with today. I am sorry Mr Sterling is not here, because of course this is the result of the Nancy B decision. One of the things that happens with mentally incapacitated people is that it is very difficult to let them off this earth. Everybody feels really scared, and I guess the drafters of this legislation felt scared because they did not say anything about withdrawing or withholding of treatment. Withholding of treatment, yes, if you have in your directive that you do not want a ventilator. So they will not give it to you unless modern medical technology is advanced and it might work. But nothing about withdrawing treatment. I have to be careful because I cannot talk about cases, obviously, but the worst time one can have as a guardian is if somebody who is under guardianship has been put on a ventilator over the weekend by a resident in an emergency and then on Monday they start phoning to say, "No reason here. Should pull it off," and there is some young person outside there who wants that intensive care bed.
People have accidents. They fall off motorcycles. People get old and they become useless. The question is, who is going to be making those decisions and how about stopping treatment? All the words that are coming out of Ontario about the cost of health care -- this might need to be something you will need to address. There were nursing homes in Alberta that required people being admitted, or those admitting them, to sign what is called a "do not resuscitate" order. "You can't come in here." That is tough enough for families or people to say, "If I have a coronary, don't jump on my chest; don't run me to the hospital in the night." Try that on as a guardian or a power of attorney. Quite a blank cheque to be asked to sign.
I am suggesting that you clarify the issues of consent to withholding of treatment. I notice the public guardian, who is going to be a lot busier than I ever was and with good reason -- not that I do not think Mr Paisley does not work hard enough, but the things he is going to be asked to do are very important and they should be added to the jobs. One of them is that he is going to get a notice of incapacity. Every time a physician thinks you have lost it for the last six months and you are not going to get it back, he has to tell the public trustee. Why? Is this a communicable disease, incapacity? What is he going to do with this information? Is he going to do a proper assessment for guardianship? Is he going to send an advocate in? Is he going to keep your name on a list as somebody who is incapacitated out there, and be ready to be called upon as a substitute consenter? I cannot quite understand why this notice is mandatory, unless it is a way of case finding. If it is, it is a very good way because every time a physician sends in those notices, there is a guardianship order following. What did somebody say about lawyers and $100,000?
Interjection.
Mrs Hotz: Yes, there is part of it in there, right there. I would just like to see you consider why you are going to do that. Legal costs: I do not believe people should have to pay lawyers when somebody else decides they are incompetent and they have to go to court to fight that. Legal aid in Alberta did not cover this sort of action; it was not in their policies. It may be here; I do not know. But even so, it is going to leave out a lot of people who have somewhat more income. They are telling us that older people are getting richer and richer. Is this the way we want them to spend their money, unless their sons are lawyers?
I believe the crown in right of Ontario should cover these costs and that no one should have to pay to defend himself against an assertion of incapacity brought by other people. Responsibility for these costs could deter somebody wanting to contest an assertion. I certainly know, in terms of ordinary guardianship, the public guardian can get a lot of work just because a family does not want to use their money or deplete an estate by paying $2,000, $3,000, $4,000 or $5,000 for the cost of a hearing. I am recommending that the Attorney General, not the Advocacy Commission, pay for these legal costs, and if not, that you regulate the amounts of them, because they can go right out of sight. Once this thing gets rolling, the procedures get more and more expensive. Alberta went for 10 years without the physicians thinking about how much it costs to do this work, then suddenly the penny dropped.
Sterilization: Let's talk about that one. Mentally handicapped people living in the community get married or they get pregnant. Families who are having younger people of child-bearing age or child-making age, and I guess the child-making age goes on for ever, get really worried about what might happen.
To me, it seems that the right of women who are not mentally incapacitated to decide to use sterilization or to have their tubes tied is one that is not available to women who are mentally incapacitated. Some of them cannot take birth control pills for a range of reasons I will not bore you with. Depo-Provera has been used, and that is an experimental drug. The alternative is abortion. Culturally and religiously and for a whole lot of other reasons, abortion should not be seen as the form of birth control used by mentally incapacitated people. But I do hear that Ontario is looking at this issue of non-therapeutic -- I just heard that at lunch, and it looks like this is being attended to in another forum, but it is an issue of discrimination against, as well as protection of, the interests of mentally handicapped women and males as well.
Now we come to the one I know best, and we have just got a mere three minutes. Boil an egg. The public guardian in Alberta fell under the Department of Family and Social Services, and that is why I do not talk like a lawyer. The public trustee worked for the Attorney General, but there was a lot of work in common. Ontario goes much further than this and we all know the good things about enduring powers of attorney, temporary guardianships and all these things that will stop full guardianship.
Let's get back to full guardianship of the person. The problem in Ontario and the one you might have here is that everybody is going to read this act very simplistically and say, "You have to have a legal guardian if you can't make decisions for yourself," and say, "You can't make decisions for a vulnerable person unless you're a legal guardian." That is going to cut out and bring to a halt a lot of very good informal supports that are quite adequate for the conduct of most people's lives. In Alberta many private guardianships were perhaps not necessary. One of the ways people got a guardian of the person was that there was a guardian of property or a trustee being appointed, because often the ability to deal with one's money and the fear that you will give it to the wrong person gets that process going. That is fine except that you do not go back to court twice. What used to happen was that the lawyers and the bench and everybody said: "If you're going for this, go for the other at the same time. Even though they don't need guardianship in all these areas right now, probably sooner or later they will, so you might as well go for the whole" -- and I will not use that word again -- "you might as well do it all."
Therefore, the aims of the legislation to be non-intrusive can be overtaken by the practical way we all live and organize our affairs. Therefore, in planning, the avoidance of guardianship somehow should be rewarded. Reward the lawyers, reward the doctors, reward the bureaucrats for anything they can do to find other things than guardianship, as long as the person does not come to risk.
I notice there is no requirement for guardians to live in Ontario. You want your guardians of property to live here, but you do not want the guardians of the person to live here now. This is not just going to Florida for two months in the winter; this is for ever. It is really difficult to be a guardian of the person if you do not live in the same province, and they cannot really get after you for not being a good guardian. I think the lawyers in the group will know that that might be a problem.
The other thing is that the public guardian may of course get a lot more work, because if family members who would be guardians are not resident here, that job will devolve on the public guardian. But this is probably an okay situation and the family outside the province could be kept in contact with the situation and still be involved, even though they were not the formal guardian.
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I have given you statistics on page 18 that you can read at your leisure, but not surprisingly the public guardians have had mostly mentally disabled adults in institutions to look after and a somewhat smaller number of older people in institutions. Family and private guardians have many more people living in the community to care about and many more older people.
That brings about another point, which is that time passes. A guardian is not frozen in time. If you pick a power of attorney or a guardian and you are old, chances are they may not be around for much longer. Chances are that the public guardian should watch the demographics of the private guardian population because the traffic is moving in his direction and he never gets old. He is always there.
Burnout is another issue for aging guardians. Being with somebody in the community, and you heard this from the lady sitting here before me, is very tiring. When you are responsible it is even more tiring.
The act provides for custody rights. Younger mentally disabled adults living in the community move around at quite a rate. They do not like where you suggest they should live and they disappear. At 2 o'clock, 3 o'clock or 4 o'clock in the morning the group home calls. The group home will also call the public guardian trustee staff at 2, 3 and 4 o'clock in the morning. This is hard work, and the more community living you have the more interesting and hard it is going to become, so the family guardian really has to be supported. The advocate needs to be encouraged to support family and private guardians rather than take that watchdog role and the finger-shaking too seriously.
Getting to the end, I think you should do some case load forecasts. Six hundred thousand was mentioned. I had 200,000 people under guardianship, but I did not have all the other impellers to guardianship that your legislation may create. You need to know how many people and what is going to be needed for them before you get started off, because this is not something you can put off until next month or next year when you have the funds. These people are out there and the community has expectations. I suggest you move ahead with what you can do in stages and evolve from there.
Public information is really important. I mentioned that before. Legal costs I have mentioned before.
The last thing I want to say is that it is very difficult to reconcile the support of human rights with that of protection. You have tried in this province to put together or cobble together the best of what everybody else has done. Obviously in five years from now you are going to look back and say, "Well, it was a fine effort and look how far we've come." But right now it is a little bit tough. I guess I only hope that in five years you will also be receiving letters from all those other jurisdictions that say, "We'll have what they're having."
Mr Poirier: It is most informative to have you here because you have lived in the shoes. You may or may not be ready to apply for Ontario's position to be the next one, right?
It should be most interesting what it would cost and the work load. What do you expect? You have mentioned 600,000. What do you think it could be -- a million?
Mrs Hotz: It depends on how the legislation is presented to the public. For example, in Alberta, I understand, and it was long before my time because they have had this legislation for 14 years, every institutional administrator got a letter warning him that at his peril did he treat anybody who was incompetent and did not have a guardian, so there was a lot of action. I think your health consent legislation is saying to physicians, "at your peril." So a lot of the things you put in place are going to determine what comes forward.
The other thing is that nobody should have the impression that to make decisions for somebody who is incompetent is an illegal or a bad act. This is not so. I think your minister, in talking about the Advocacy Commission, emphasized that family and friends and informal support systems are still there. There are very few things that you really need a formal decision-maker for, that you can cry out that your rights are being abrogated. Health care is one of them, and there are ways through your act to get around that. Legal representation is another, and I think there is legal representation already for incompetent people. Decisions as to where you are going to live: If you are already in a nursing home or if you are in a long-term care institution, what decisions are needed to be made that require a court-ordered guardian? So you can keep it down by the other acts you have put in place.
Mr Poirier: I see. Thank you very much for coming forward. You have very good insight into what could be seen as the reality of it all.
Mr J. Wilson: Thank you, Ms Hotz, for a very informative presentation. It is very good of you to come before the committee, especially with the amount of experience you have. I would agree with most things you have brought to our attention. I would not agree and I do not think you meant that many people get older and become useless. I do not think you meant it in the way it may have come out.
Mrs Hotz: I am sorry if it came out that way. Not at all.
Mr J. Wilson: It may have offended some.
Just continuing on Mr Poirier's point, though, you mention that if the government were to do this and it were done properly, it may cut down on the number of guardians required. But one of the things I do like about the legislation is in Bill 108 -- and what Mr Winninger was explaining before and Mr Wessenger -- in the case of a schizophrenic, I can see the way the legislation is set up that a number of families will be tempted to, as you say, get whole guardianship as soon as possible, as soon as they can get a court date, because, notwithstanding the Mental Health Act, the provisions in this legislation do appear, anyway, to make it easier to have a schizophrenic undergo treatment. So I am a little confused. Are we going to have more guardianships or fewer guardianships?
Mrs Hotz: We had very few people under guardianship who were just mentally ill because it was necessary that you could not make decisions on a continuing basis, and mental illness is something cyclical. Also, people who were that ill that they were incompetent were usually under certificates in psychiatric hospitals. The people who were under guardianship who were mentally ill were usually also mentally incapacitated, that so-called dual diagnosis group, and it was that that drove the guardianship.
Mr J. Wilson: You mentioned also that one of the dangers of guardianship is that once you are under it, it is pretty hard to get out of it.
Mrs Hotz: Yes, and under this act, very much so.
Mr J. Wilson: Have you a practical experience on that?
Mrs Hotz: Yes. Again, the matters of expediency -- and I noticed the assessments for regular guardianship are not as rigid or rigorous as those for durable powers of attorney, and I wondered about that because it just appears to need somebody to say, "I've known this person in the last 12 months and I really think he needs a guardian and here I am." The court can then make a decision as to for how long a person needs to have a guardian.
I do not know whether the charter would require some regular review, but your review is left to when any person brings something to the court, and that seems to be more attached to changing guardians who get tired or whatever or leave than the need of the person for a continuing guardian or the actions of a guardian.
I am really pleased to see that the public guardian trustee has a role to oversee these guardianships. That is just excellent, but it is not a defined role. It is something that he can choose to exercise or not. He may or may not need to ask for the guardianship report to see what a guardian has been doing. But there is nothing in there about the need for guardianship or to assess whether somebody still needs a guardian. We all know that for the people who have guardians probably it is a long-term situation, but if you really want to follow the letter of your intent about human dignity, somebody should be also checking on the need for guardians as much as what the guardian has been doing with the person under guardian at intervals.
Mr J. Wilson: Thank you very much.
Mr Wessenger: Thank you very much for your presentation, because you have had real experience in dealing with these questions.
I would just like to make sure I am clear on your presentation. As I understand it, what you are saying is that there is a danger in this legislation of having too much guardianship because of the cost both to the private and to the public about having a large number of guardianships. Is that correct?
Mrs Hotz: The danger is --
Mr Wessenger: -- is of the cost of having too many guardianships. Is that your concern?
Mrs Hotz: No, I am concerned that getting guardianships is expensive for people.
Mr Wessenger: Yes.
Mrs Hotz: But doing some of the other less formal processes and going back and forth on health consent is also expensive, so people may go for guardianship once and for all to tidy up the situation.
Mr Wessenger: I understand that you would prefer to see more of the situations dealt with under the Consent to Treatment Act and the Advocacy Act.
Mrs Hotz: Exactly.
Mr Wessenger: Yes. So that those are very important features of the whole package, then, the Advocacy Act and the Consent to Treatment Act.
Mrs Hotz: A temporary guardianship is a very good feature in emergency situations. We have all dealt with those. That baby should not go out with the bathwater.
Mr Wessenger: The other thing is, am I correct that you question the need for this notice of incapacity as part of the legislation, other than a case study? You mentioned that you felt that sending a notice of incapacity to the public guardian was somewhat unnecessary.
Mrs Hotz: No, I am just wondering what it is supposed to achieve. What is the public guardian trustee to do with this information? It almost implies that if he does nothing and something goes wrong, there can be an issue of statutory neglect. So therefore he would be impelled to do something, and because we live in a bureaucracy, guardianship, nice and tidy, might be what results.
Mr Wessenger: The other thing I would like just to confirm is, you have indicated that in Alberta the use of guardianship for schizophrenic patients has not been utilized to any high degree.
Mrs Hotz: Not unless there was mental incapacity as well, and I think the previous mental health legislation in Alberta kept guardians out. Once you entered those hospitals as an involuntary patient, all the decisions were made for you in those hospitals.
There have been revisions of mental health legislation all over, and now consent by guardians is more of a viable option, plus people are changing their status from formal to informal very frequently, which they did not do before. So that world may be changing.
Mr Wessenger: So it is an advantage to have the voluntary consent through a substitute decision-maker with respect to admission for treatment of a patient.
Mrs Hotz: Yes, if somebody is prepared to go.
The Chair: Thank you, Mr Wessenger. Ms Hotz, on behalf of the committee, I would like to thank you for taking the time out of your busy schedule to come and give us this presentation today.
Mrs Hotz: Thank you.
The Chair: Having no more presenters before the committee today, we will adjourn until 9:30 on Monday the 17th of February.
The committee adjourned at 1613.