ONTARIO ASSOCIATION OF DEVELOPMENTAL SERVICE WORKERS
EASTER SEAL PARENT ADVOCACY COMMITTEE
CANADIAN ASSOCIATION FOR COMMUNITY LIVING
CANADIAN DIABETES ASSOCIATION, ONTARIO DIVISION
ONTARIO ASSOCIATION OF NON-PROFIT HOMES AND SERVICES FOR SENIORS
CANADIAN MENTAL HEALTH ASSOCIATION, ONTARIO DIVISION
CHEDOKE-MCMASTER HOSPITALS / MCMASTER UNIVERSITY RESEARCH ETHICS BOARD
CONTENTS
Thursday 13 August 1992
Advocacy Act, 1992, and companion legislation
Ontario Medical Association
Dr Ted Boadway, director, health policy
Barb LeBlanc, manager, health policy
Dr Ian Warrack, board chair
Ontario Association of Developmental Service Workers
George Anand, president
Easter Seal Parent Advocacy Committee
Ludmilla A. Donald, chair
Canadian Association for Community Living
Kenneth Pike, member, task force on alternatives to guardianship
Diane Richler, executive vice-president
Canadian Diabetes Association, Ontario division
Peter Harvey, chairperson, social issues committee; member, national advocacy council, CDA
Advocates' Society
Ray Colautti, director
Eleanore Cronk, president
Ontario Association of Non-Profit Homes and Services for Seniors
Paul O'Krafka, president
Michael Klejman, executive director
Canadian Mental Health Association, Ontario division
Hugh Tapping, chair, policy advisory committee and board member
Carol Roup, senior director of policy, research and branch services
Chedoke-McMaster Hospitals/McMaster University Research Ethics Board
Dr David Rosenbloom, chairman
STANDING COMMITTEE ON ADMINISTRATION OF JUSTICE
*Chair / Président: Cooper, Mike (Kitchener-Wilmot ND)
*Vice-Chair / Vice-Président: Morrow, Mark (Wentworth East/-Est ND)
*Akande, Zanana L. (St Andrew-St Patrick ND)
*Carter, Jenny (Peterborough ND)
Chiarelli, Robert (Ottawa West/-Ouest L)
*Curling, Alvin (Scarborough North/-Nord L)
Harnick, Charles (Willowdale PC)
Mahoney, Steven W. (Mississauga West/-Ouest L)
*Malkowski, Gary (York East/-Est ND)
Runciman, Robert W. (Leeds-Grenville PC)
Wessenger, Paul (Simcoe Centre ND)
*Winninger, David (London South/-Sud ND)
Substitutions / Membres remplaçants:
*Cordiano, Joseph (Lawrence L) for Mr Mahoney
*Owens, Stephen (Scarborough Centre ND) for Mr Wessenger
*Sterling, Norman W. (Carleton PC) for Mr Harnick
*Sullivan, Barbara (Halton Centre L) for Mr Chiarelli
*White, Drummond (Durham Centre ND) for Ms Carter
*Wilson, Jim (Simcoe West/-Ouest PC) for Mr Runciman
*In attendance / présents
Also taking part / Autres participants et participantes:
Auski, Juta, senior consultant, policy development branch, Ministry of Health
Callahan, Robert V. (Brampton South/-Sud L)
Lafreniére-Davis, Nicole, director, children's services branch, Ministry of Community and Social Services
Malkowski, Gary, parliamentary assistant to the Minister of Citizenship
Martin, Heather, policy analyst, children's services branch, Ministry of Community and Social Services
Sharpe, Gilbert, director, legal services branch, Ministry of Health
Valentine, Mary Beth, senior policy and program adviser, Office of Disability Issues, Ministry of Citizenship
White, Drummond (Durham Centre ND)
Clerk / Greffière: Freedman, Lisa
Staff / Personnel:
Gardner, Dr Bob, assistant director, Legislative Research Service
Swift, Susan, research officer, Legislative Research Service
The committee met at 1015 in committee room 1.
ADVOCACY ACT, 1992, AND COMPANION LEGISLATION / LOI DE 1992 SUR L'INTERVENTION ET LES PROJETS DE LOI QUI L'ACCOMPAGNENT
Consideration of Bill 74, An Act respecting the Provision of Advocacy Services to Vulnerable Persons / 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 / 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 / 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, 1992 and the Substitute Decisions Act, 1992 / Loi modifiant certaines lois de l'Ontario par suite de l'adoption de la Loi de 1992 sur le consentement au traitement et de la Loi de 1992 sur la prise de décisions au nom d'autrui.
The Chair (Mr Mike Cooper): I call this meeting of the standing committee on administration of justice to order. This is the final day of public submissions on the advocacy package.
ONTARIO MEDICAL ASSOCIATION
The Chair: I would like to call forward our first presenters, from the Ontario Medical Association. Good morning. Just a reminder that you'll be allowed up to a half-hour for your presentation. The committee would appreciate it if you'd keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you're comfortable, could you please identify yourselves for the record and then proceed.
Dr Ian Warrack: I am Ian Warrack. I am still a general practitioner from Vanier. I'm also the chair of the board of the OMA. With me today are Dr Ted Boadway, who is director of health policy at the OMA, and Barb LeBlanc, who, as we mentioned the last time, is really the brains behind this presentation.
We appreciate the opportunity to speak to the committee a second time and address some of the key issues as we see them regarding the amended legislation.
First, I would like to commend the government on the introduction of substantial amendments to the legislation. We believe the amendments address some of our most significant areas of concern. Naturally there are still areas that we're not entirely comfortable with, but we are confident that if government continues to listen and respond to carefully considered criticisms and suggestions for improvement, we'll ultimately achieve our mutual goal, which is legislation that empowers and protects vulnerable and incapable adults without erecting undue obstacles in the care and treatment provided by caring families and well-intentioned health practitioners.
The Ontario Medical Association has been very interested in the development of this legislation, as you probably know, and in fact discussed the acts extensively at its annual general meeting of council. The OMA council, which is basically our parliament, gave us clear policy directions in support of the empowerment of vulnerable persons in making treatment decisions, clarification of the rules surrounding consent to treatment, and the making of advance directives in support of future health care decisions. Those principles have subsequently been embodied in our recommendations on the three pieces of legislation.
Before we begin to discuss the problem areas we still see with the legislation I'd like to briefly identify some of the positive amendments from our perspective.
Probably the biggest improvements from the practitioner's perspective are the amendments to the emergency treatment provisions under the consent act. They are now much more practical. The expansion of the definition of "treatment" to include a "plan of treatment" is also very helpful. And under the Substitute Decisions Act, we feel the introduction of expedited powers of attorney is a significant move forward in ensuring that a person's capable wishes are faithfully executed in the event of later incompetence.
The OMA's comments today will be based on two fundamental principles: fairness and practicality. It's critical that the legislation reflect both of these concepts throughout or it's destined to fail.
We will confine our remarks to a relatively few issues today. Our written brief, which I hope you have, provides a more comprehensive discussion of our concerns and our suggestions for improvement of the legislation.
Dr Ted Boadway: As Dr Warrack has said, we will address a few key issues today, those being access to records, requirements for rights advice and reliability of wishes. We will also comment more generally on the age provisions under the consent to treatment legislation and the way psychiatric care is handled under the bills.
The Advocacy Act permits access to records under a variety of circumstances: with consent of the person; without consent, if the person is deemed to be at risk of serious bodily harm; with consent of a substitute decider, where the person is incapable of consent on his or her own behalf; and with the permission of the Advocacy Commission if the records are required in the pursuit of systemic advocacy.
This access appears to put vulnerable people at an unfair risk of having their personal medical information violated. It also places an impractical onus on practitioners to ascertain the validity of these requests for access.
Access to health information is a major concern to physicians. Our code of ethics demands that we hold our patients' health information in confidence, and breach of this trust is grounds for disciplinary action at the regulatory college.
Physicians are inundated by requests from various third parties for access to medical records. These run a gamut and include families, insurance agencies, lawyers, other health professionals, and government agencies such as the Workers' Compensation Board, to name just a few. To give you some idea of the volume we are talking about here, I will say that the average GP probably gets about 40 to 50 of these requests per week.
It's interesting: Ian and I were discussing this on the way over here this morning, and Ian thought that in his own personal practice the number might be closer to between 30 and 40. I think it depends a little bit upon the nature of your practice, but it's a great number. Also, at the Ontario Medical Association we get a great number of requests for help and information from doctors who are confused by what they should and should not release, and to whom under what circumstances. It's a very serious problem out there for practising doctors. We believe that the provisions under the Advocacy Act will guarantee confusion as they stand at the present time.
This act does not seem to require that an advocate identify the source of his or her authority to examine any particular record, and further, does not require any independent authorization for access. Advising physicians on a continuing basis on what authority they have to have before they can actually release information is the kind of advice we have to give many times a day to physicians around the province. Physicians will, therefore, have no reasonable grounds upon which to refuse access and will have little option but to acquiesce when faced with some of these requests. In addition, since the rules governing information which may or may not be accessed are unclear, it is likely that the medical information may be inappropriately released.
The OMA has serious concerns about the position in which it places our members and our ability to give them wise advice. We believe there must be a clear authorization for access to records and that this should probably come from the judiciary.
Dr Warrack: The second area we'd like to discuss today relates to the circumstances under which rights advisers must be contacted.
The amendments under section 10 of the Consent to Treatment Act appear to be an attempt by government to make the provision of rights advice more practicable. Unfortunately, this amendment still requires further clarification.
The requirements regarding rights advice following a finding of incapacity vary depending on a number of factors, including where the treatment is to occur, whether or not the treatment is a controlled act, and whether the person objects to the treatment.
This will really prove to be very confusing to practitioners. They'll not understand why they have different obligations and requirements for the same treatment depending on whether they're in their office or in a designated health care facility. In addition, the OMA believes that the location of treatment will become increasingly meaningless as greater numbers of procedures are carried out in the community and in home settings.
The OMA recommends that the reference to place of treatment in the act be removed and that the requirements for rights advice relate to the treatment proposed and whether the person has any objection to it. Consent or refusal would then be obtained from the substitute decision-maker.
We believe that this recommendation is in keeping with the thrust of the Regulated Health Professions Act, which identifies invasive procedures and those that pose risk to the person as "controlled acts" and places specific regulatory restrictions on them.
It also permits necessary medical care to occur without delay for non-objecting persons, based on the authorization of their substitute decision-maker.
If the rights advice process is to be effective, it must be seen by physicians to be fulfilling a genuine need; otherwise it will be viewed only as a bureaucratic roadblock to good patient care.
Dr Boadway: A third area of OMA concern is a practical one relating to the reliability and validity of previous wishes. This legislation permits wishes to be expressed in a number of ways, some of which are quite formalized and others which are not.
Questions arise as to the reliability and validity of wishes whenever a practitioner receives this information indirectly. In some circumstances, for example, when the person has executed a power of attorney for personal care, the physician can proceed with a fair degree of assurance that the instruction is a true reflection of the person's wishes. However, when the practitioner must rely on hearsay, the degree of confidence is significantly less. This confusion is compounded in the event that oral instructions relayed by a third party contradict any written instructions available.
While the OMA has no desire to see people irrevocably bound to their written instructions, we believe that the legislation, as drafted, fails to provide adequate protection to incapable persons whose instructions may be misrepresented by unscrupulous family members or, more likely, by misinformed family members or by members of the family who are confused by the emotion of the moment. Very frequently these circumstances are emotionally stressing in an emergency situation, and just what is the proper thing?
It also places physicians in a difficult position by casting doubt on the strength of the consent upon which they are to act. This is particularly important in the event that there is disagreement among the family respecting the treatment and an action may be launched against the physician. I must tell you that disagreement among the family is not a rare thing whatsoever, particularly in emergency situations where the family doesn't have time to work it through as a family unit.
The OMA recommends that for clarification the term "wish" be defined in the act and that there be a requirement that the person giving or refusing the consent have firsthand knowledge of the wish that is being relayed.
Dr Warrack: The next area that we'd like to address is more general and relates to the portrayal of mental illness and treatment for mental illness throughout the three pieces of legislation. There are clauses in each of the acts which specifically separate mental health from the rest of health care. Examples include admission to a psychiatric facility, treatment of a mental illness as defined in the Mental Health Act and different standards respecting the privacy of psychiatric and non-psychiatric information held by an advocate or the public guardian and trustee.
The OMA believes it is completely inappropriate to foster public fear of mental illness and mistrust of psychiatric care through the introduction of legislation that segregates one facet of health care from all others. If government truly wishes to introduce progressive legislation, it will reconsider the tone it sets for provision of mental health services and move towards bridging the artificial gap created between mental and physical health.
Dr Boadway: Perhaps one of the last items we would like to comment upon relates to the age provisions under the Consent to Treatment Act. I understand that the committee has been assailed with requests to return to the original presumptions of capacity and incapacity over and under 16 years of age. Although there appears to be no easy answer here, the OMA believes, and continues to believe, that relying on the common law is a good starting point. In any case, the OMA is pleased to offer whatever assistance we can to address this problem in a manner that most appropriately meets the varying health needs of adolescents.
Dr Warrack: Before I close, there's one thing which isn't down on the script which I would like to talk about, because I do a significant amount of work in nursing homes. That's under Bill 108, subsection 65(2), regarding a change of residence. Basically, what it says is that a guardian may not change the incapable person's residence to a more restrictive setting without agreement from the public guardian and trustee and the person's continuing power of attorney for property.
I'll tell you that quite often we have people who tend to wander, particularly in a nursing home setting. As they develop that trait, there have to be some restrictions that are applied on them which prevent them from doing that, because in fact what happens is that they will often run into their own personal problems. They'll run into physical danger. The real problem is whether or not the PGT would be able to respond in adequate time to prevent that happening. What I'd like to see is that there's some kind of timely response from the PGT to ensure that when people are at risk, we can maintain their safety.
Anyway, in closing, I'd like to reiterate our support for the work done by government to date in response to identified flaws in the legislation.
We hope that this second round of hearings will bring about equally significant but, hopefully, fewer amendments and they'll enable us to effectively empower and protect vulnerable and incapable adults.
I'd like to thank you for your attention, and obviously we'd be pleased to respond to any questions you might have.
The Chair: Thank you. Questions and comments?
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Mr Alvin Curling (Scarborough North): I want to thank you for your excellent presentation. The fact is that this thing is so wide that you, I notice, focus on just some specific areas. I'm sure if you had had more time you'd have gone into more.
Looking at this, actually, as you read, I was looking at page 4, just in the middle, in the centre of it, where you talk about disagreement among the family respecting the treatment and an action is launched against the physician. Then you mention something about the time factor in this, that sufficient time should be given in order to assess and to understand the decision being made by the vulnerable person. Sometimes the family itself would have had, as you said, a very short time to make these decisions, and as soon as that has been refused, the advocate then, if that process has gone through -- do you think there was adequate time in which the advocate himself could assess that decision? I think they have a seven-day period or so in which they have to make that decision.
Dr Boadway: To be honest with you, sir, I don't think I understand your question, okay? I'm sorry.
Mr Curling: That's fine. Let me try again. If I heard you correctly, I heard you say that at times the families have to make the decision, and it's a short time in which to make quite a few decisions as to whether or not they should go ahead and the doctor should go ahead and do whatever he has to do. Now, if the person refuses treatment and then the other process clicks in where the advocate would have to come into place and they have to get another decision to be made, do you feel there is sufficient time where the advocate himself can understand the position and understand the situation enough in order to make that decision for that vulnerable person?
Ms Barb LeBlanc: If I could maybe just make a comment, I think the real answer there depends on the training of advocates, and presumably the processes in place will ensure that they have the expertise and the understanding that will enable them to make those quick decisions.
Mr Curling: Good. Because that's the point I wanted you to raise instead of my raising it. The training process of advocates, have you examined that and are you comfortable with what is being presented as what training would involve for an advocate and who will be trained in these instances -- in other words, the qualifications of these advocates and how the selection process would be? Because you yourself would be assessing, as a doctor, whether or not this advocate understands or is capable of understanding the complexity of that no or that yes within that vulnerable person who is saying that.
Dr Boadway: I can't answer that, simply because I don't think we understand what the real training process will be. We don't have any clear understanding of what will truly be there, so I just simply have to trust that once the training process comes in, it will be adequate and there will be opportunity to have input into it.
Mr Curling: Do you feel that the government itself should be in touch, especially with doctors, physicians, practitioners, about the training program for advocates before it is put in place -- in other words, that it should be shown, before that is put into the regulation, to say, "Here are the procedures for training"?
Dr Boadway: Inasmuch as physicians will have to interact with those people a lot, it's important that whatever is constructed is constructed in a way that a useful interaction occurs. I think that if you don't ask the people with whom you're going to have to interact how it might happen, you might make a mistake. So hopefully we'll have some input into it. Quite frankly, there's much of it that's none of our business, but some of it will be our business because it will be having to interact with our frame of reference in our place of work.
Mr Curling: You're saying it may be none of your business, but I think it's going to be, as you said. If you as a doctor, as a physician, knowing exactly how important it is for, say, proceeding with some operation, and this vulnerable person says no and then goes through the process of this also, all the individual will do is translate to say, "I think when that individual says no he means no," and you're saying, "I don't think that you do understand the consequences of that no." So therefore the question you're going to ask is, is this advocate capable enough to comprehend what that no is? So therefore you, as a physician, are a part of that in the oath you've taken to serve and to save lives, and you're saying this could cause death itself.
Dr Boadway: Yes, you're absolutely right. This is in the area of our medical expertise and these are the areas where we hope we'll be listened to extensively, because that is what we're trained to do. When it comes to areas of medical expertise, we hope they'll be accepted as a significant amount of input.
Mr Curling: The next point I would like to turn to is on page 2, although it is not quite the same way the dentists have put it, that "This access appears to put vulnerable persons at an unfair risk of having their personal medical information violated." In this other part, "It also places an impractical onus on practitioners to ascertain the validity of these requests for access."
Although I'm not speaking about access -- I don't want to make the point about access to information -- many of the dentists who came in yesterday spoke about putting the onus on them to make certain decisions. I'm not quoting verbatim, but I think he stated that he didn't want to be a social worker in all of this and the onus that is placed on him to make decisions is too much.
Do you find yourself, because of these bills, this legislation, coming more to making decisions for family and doing the paperwork, the follow-through, all this process that the advocate -- is there more paperwork for you? Is there more social work for you?
Dr Boadway: It's not so much social work; it's a matter of trying to decide what is the right thing to do under these rules. I have to tell you that we've had the opportunity to spend a lot of time working on the procedure through which one will have to go to release information as a practitioner. We have had the luxury of that. Most practitioners haven't had that. We think it will be very difficult for doctors to sort it out. We're having difficulty sorting it out. Every time we work through it, it seems we find another wrinkle, and we've been through it now for months. We think the probability of getting our members out there to understand how to do this just right is very low; we're quite pessimistic about that. So the chance of confusion and records being at risk because of people making mistakes is, we think, increased. That's our concern because we're having a lot of difficulty grasping all of the nuances of what one should and should not do and when.
The Chair: Mr Malkowski on some clarification.
Mr Gary Malkowski (York East): Just a point of clarification. I think it might be helpful for members to have the role of the rights adviser, if the Ministry of Health's policy person could clarify this.
Ms Juta Auksi: I was just afraid that perhaps in Mr Curling's question there might have been some slight misunderstanding raised about what the role is of the rights adviser, who of course in the previous version of the bill was called the advocate.
Of course, that rights adviser does not make a treatment decision. The role of the rights adviser is simply that if a person is found incapable, in those limited circumstances now under the bill where the rights adviser would meet with a person, the role would be simply to explain to the person that they have a right to have the finding of incapacity reviewed. It doesn't really relate to whether the person decides yes or no; it relates to whether they are disagreeing with the fact that they were found incapable and that the decision is removed from them.
So your response actually was okay in that I didn't get the sense that you misunderstood, from the comments you made in response to the question. But I just wanted to make sure that the committee members and yourselves weren't somehow misled.
Mr Curling: I would like to comment on that. I'm saying that in all the forums to advise anyone, they must understand the complete issue, and when the vulnerable person says no, the rights adviser has to understand -- the person said no, and did he understand the process itself? I'm not saying they are going to make the decision. You answered correctly, yourself.
Mr Jim Wilson (Simcoe West): Thank you very much for your presentation again before the committee this morning. I just wanted to say briefly that we're very sympathetic to your concerns with regard to access to records. We put the government on notice with respect to that, and we're prepared to introduce amendments if between now and the clause-by-clause hearings we don't see some government amendments that address those concerns.
The same goes with regard to the recommendation that rights advice relate to the treatment provided. The comments you've made this morning make absolute sense to me.
I wanted to ask you to clarify two sections dealt with in your oral presentation. One is the different treatment of mental illness with respect to other facets of health care. Also, I really don't understand what you're trying to get at with respect to age 16 and the question of capacity. I think your paragraph there and your comments are extremely general, and it might be more helpful if you could be specific there.
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Ms LeBlanc: If we start with the issue of mental health, that was really just a general comment that was designed to reflect some comments we've had from our membership, particularly psychiatrists, on an ongoing basis, for years. At this point, we have an opportunity to change some long-standing attitudes. Unfortunately, instead of presenting us with an opportunity for improvement, this legislation seems to foster some of those old stereotypes.
Mr Jim Wilson: You use the word "progressive" in your brief, and we've been told it is regressive in the area of mental illness. Is there a section in your more detailed written brief that would point out some of the regressive measures?
Ms LeBlanc: Actually, in the written brief, rather than dealing with it as a global issue, we have, at a clause-by-clause level, identified areas where we thought changes might be appropriate.
Mr Jim Wilson: I'll be sure to read that.
Dr Boadway: To respond to your question about age, you identified the fact that I was vague there. You're right. You see, we have wrestled with this age thing for years as a profession, and we know it's a real problem for everybody here, so we're all in this.
What was identified to you were problem areas for kids who would be disadvantaged by the choice of an age. I think that by changing it in the way it's done, you've actually looked after the problems of a huge number of kids; it's been very helpful for those. So if you take most family doctors facing most kids, you've done an awful lot for them. But you're left over with a group of kids whom it disadvantages, changing it this way. It's a smaller group and it's mostly those children who have serious problems that are usually of a psychological or a psychiatric nature or who are mentally distressed and therefore temporarily disadvantaged in their decision-making. They are in fact disadvantaged by this change.
I think you've looked after our largest problem, but you've left a small nub who are a little worse off than they were.
In the past, what we've asked doctors to do is exercise good common sense and reason, and there isn't a day that goes by when we don't get a request from a doctor somewhere between Windsor and Ottawa and Kenora who's asking about this. We get phoned about it all the time. We ask them to exercise good common sense and judgement when faced with kids. That's a difficult position to put them in, but I think that's what works because there is a body of common law out there which helps give direction and the body of common law has built up over a period of time, so we're able to advise them about that.
If you make the rules the way you've made them, there are several ways you could think about looking after that small group of kids who are left disadvantaged. You could think of making exceptions which would try to address them in particular. You could except it by place of treatment. You could except it by nature of illness. We don't like that in other settings -- in fact, we've spoken against it in our brief, so you could accuse us of coming and going at the same time; I'm sorry, but this is very difficult and that's what happens -- or you could do it by professional status. We don't think that would fly anywhere. But there are different ways you could make exceptions.
I don't think up to now you've carefully focused on the nature of that group and the exceptions that could be made. So perhaps if you take this as the right starting point -- and I think it just about is -- and if you focus on those kids and then look at what you could do to help them out particularly, you might find a package of exceptions which could address their needs.
Mr Jim Wilson: Was the OMA more comfortable with the original draft of the legislation?
Dr Boadway: No, we're more comfortable with it this way. This is a big improvement.
Mr Jim Wilson: You're more comfortable with this. I just wanted to get that clear in my mind.
Mr Norman W. Sterling (Carleton): I just have one question with regard to your statement about clarification of the term "wish," that it be defined in the act as someone having firsthand knowledge of the wish that is being relayed. What do you mean by "firsthand knowledge"? Are you saying hearsay but only one step away from hearsay?
Ms LeBlanc: Yes, actually. I guess so, if you look at it that way. What we were talking about there is that rather than "He said that she said that the person wished," it would be that you, as the substitute decision-maker, have heard directly from the person that that is in fact their wish.
Ms Zanana L. Akande (St Andrew-St Patrick): Thank you very much for your presentation. We have received presentations from various groups that have been quite interested and quite determined around the issue of time being of the essence in terms of medical information, physicians feeling they must have an opportunity to provide the right treatment for the patient immediately and therefore concerned about the transfer of official records and the speed at which that kind of information and direction is achieved. Yet when I look on page 4 of your presentation, I'm concerned about your fourth paragraph, where you say "questions arise as to the reliability," almost to the point where sometimes the physician may be -- you used the word -- getting information more like hearsay.
Are you suggesting by that that you would want something much more official like a copy of the previous direction of the patient, if it's that type of situation, or that you would like to hear directly from the substitute decision-maker, if that's the situation?
Dr Boadway: If I could just step back one step from your question, I tried to put myself in the situation of having a person who's ill and who is incapable him or herself and having a written directive from them, which they may carry on their person or get to me some other way, and then I have somebody else who says, "I think they want -- " and what they suggest is something diametrically opposed to what the person has written, and now we have to do something in the next however many minutes or hours. It's a real pickle to be in on a Saturday night, because what do you do?
What we're trying to find is as direct a way as possible to bring that information and give our members some idea how they can judge which piece of information to pay attention to, because they do now have to decide, "Am I going to pay attention to this or am I going to pay attention to them?"
What we're suggesting is that if it's first hand, that is, if the person can say, "The ill person said to me they wanted this written thing overridden," then that's fairly direct. The more remote it becomes, the less I can trust the fact that it's what the person really wants. We're looking for as close and as clear a set of directions to practitioners in assessing which kind of information to pay attention to. That's what we want.
Ms Akande: It would seem, if it is a previous direction and it is written and signed, that would take precedence. However, I can understand your dilemma. I'm receiving that and I thank you for it.
The one other thing I wanted to mention is that in this legislation, Bill 109, the only real age that is referred to is in subsection 10(4): "A health practitioner who finds that a person who is 12 years of age or more is incapable with respect to a treatment shall ensure that a rights adviser is notified of the finding if," and then a set of circumstances. I inferred from the remarks you made that you were assuming that much more definitive statements were made about the age below 16 than that.
Dr Boadway: No. We understand that. That's why we think it's so much better than it was.
Shall we add more to that or shall we leave it at that?
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Ms LeBlanc: No, that's okay.
The Chair: Thank you, Ms Akande. One minute, Mr Winninger.
Mr David Winninger (London South): I would direct your attention to clause 24(2)(b) so that we're clear that access without the consent of the patient to the records is only where there is a risk of serious harm, so it's not on demand, as it were; second, that where access is sought to confidential records for purposes of systemic advocacy, personal identifiers will not be released. That's a second caveat.
Also, I wanted to put to you a question. You mentioned that you wanted to ensure that there would be timely response on the part of the public guardian and trustee in these cases where a timely response is certainly required. I was going to ask you whether you had any idea as to what might be a reasonable time for a response so that we could take that into account.
Dr Boadway: In the one you haven't had an opportunity to read, which is our more complete brief, on page 21, that was one suggestion, a timely response. The other is to shift the inertia. Systems have inertia built into them. If you have inertia working against you, it's just a continual uphill battle. If you put inertia on your side, then things go with you rather than against.
When the legislation is worded such that you have to have -- if you look on page 21 of our brief, the first paragraph says, "A guardian may not change the incapable person's residence to a more restrictive setting without agreement from the PGT." You have to actually get it. Well, I'm sorry, but the way the PGT works, you might get it in 11 months.
So what we're suggesting, over on the next page, is that the guardian of the person shall advise the PGT of any decision to change so that the PGT knows, can oversee, and can intervene if they find a problem, but you can act and get it done. Then, in a particular setting, the PGT could say, "You folks are not doing this very well. I've looked at 10 of your cases and I'm really unhappy with what you're doing here," and they could come and take corrective action.
Mr Winninger: Would that not be cumbersome and cause some detriment to care if you move someone and then they have to be moved back again?
Dr Boadway: It's not as much a detriment to care as when you have people who are wandering on the first floor of your nursing home and you can't transfer them to the second floor, which is your secure part of the nursing home, because their mental state is deteriorating. Your problem is you have to get those people into a secure facility. Their biggest risk is wandering out on to Steeles Avenue.
The Chair: Thank you, Mr Winninger. Dr Warrack, Dr Boadway and Ms LeBlanc, on behalf of this committee I'd like to thank you for taking the time out this morning and giving us your presentation.
Before our next presenters, Mrs Sullivan.
Mrs Barbara Sullivan (Halton Centre): We have before us letters from the minister -- actually, not even from the Minister of Citizenship but an acting executive assistant to the Minister of Citizenship -- a letter from Howard Hampton, the Attorney General, and a letter from the acting executive director, assistant to the Minister of Health, indicating that none of those ministers will be able to appear before the committee in clause-by-clause -- or at any other time, it appears, in the case of the Attorney General.
It has been our contention for a long time, and Mr Sterling has raised this issue on more than one occasion, as I have, that the ministers involved do not seem to be taking their responsibility with respect to carriage of these bills and their legislative responsibility in any way seriously.
Once again today we have no legal representation from the Ministry of Health, nor is the parliamentary assistant to the Minister of Health here. We've had clear indication all the way along as we've asked for interpretation of policy and information from the parliamentary assistants that there is no freedom available to the parliamentary assistants to commit to adjustments of the words, as they've been presented in the act, for greater clarity, and it's very clear that this is simply going to continue as these hearings proceed.
I am going to place a motion before the committee that the Chairman of the committee be directed to write to the House leaders to request a change of sitting dates for clause-by-clause to enable the ministers to be present while clause-by-clause is being conducted. The clear abrogation of ministerial responsibility is beyond belief in the question of these bills.
These bills, as we know, affect every single person in Ontario with respect to the consent to treatment bill, many people in Ontario with respect to the substitute decisions bill and the most vulnerable people in Ontario with respect to the Advocacy Act.
It seems to me that the ministers should at least indicate that they have some interest in watching the progress of this legislation, in working with the committee to make the legislation better, to make it work. Every single health professional in Ontario is affected by this legislation in every single community and the Minister of Health has deigned to allow her presence to come before us on one occasion. Frankly, it's not good enough and in my view if the ministers aren't interested in this legislation, why should the opposition be?
I am asking now by way of motion that the Chairman contact the House leaders for permission to change the sitting dates of clause-by-clause to enable the ministers to be present so that they can deal with the legislation for which they have legislative responsibility.
Mr Sterling: I was also intending to move a motion and I was going to do that probably at 12 o'clock so that we wouldn't interfere with the witnesses, but notwithstanding that I want to indicate my support for Mrs Sullivan's motion.
I think it is even more critical because of what the opposition parties have agreed to do, trying to be as constructive as possible, as we can be with Bills 74, 108, 109 and 110. We have agreed to limit the time for committee of the whole House back in the Legislature, when we would hope that we would have the ministers present, in order that these bills can be passed and we can get on with clarifying what in fact the law is in this area.
I had fully expected, in agreeing with my House leader that this was an acceptable route for us to do in terms of saying, okay, we were going to be reasonable in the time that the Legislature was going to take when this legislation goes back, that the ministers would have been here for clause-by-clause consideration of these bills. Now we find that we are not going to have the ministers present here for clause-by-clause consideration, and we are never sure that the ministers are going to be in the Legislature when clause-by-clause consideration is done in committee of the whole House.
We want to drive home some points and we think there are very significant defects in this legislation at this time. Therefore, I agree with Ms Sullivan. My motion would have said we postpone all consideration of clause-by-clause until the ministers can appear.
Mr Winninger: I'd like to respond as well to the comments made by Ms Sullivan. First of all, everyone's cognizant that the role of the parliamentary assistant is in part to steer these kinds of bills through committee, and that includes clause-by-clause. Ministers have appeared before this committee on these bills. The number of amendments, which the opposition mocked, I think attests to the responsiveness with which the ministers greeted the concerns expressed by the opposition members and expressed by many of the fine presenters we've had over the course of the first set of hearings, and now the second set of hearings. Certainly, meetings will take place to discuss any further amendments that may become necessary.
I don't know why the opposition parties are insisting on having the presence of these busy ministers, particularly when they have such other responsibilities as cabinet retreats, when we agreed to two extra weeks of hearings because of the number of amendments and to give the public a fair opportunity to come back and respond to the amendments that have been put forward.
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I think it's very unfair to suggest that somehow the absence of the ministers from these hearings is suggestive of any disinterest on their part. I know they read Hansard and I know they read the written presentations with considerable interest.
I would certainly object, and I would ask my colleagues to object to the kind of motion put forward by the Liberal Health critic directing the Chair to request their presence or to request any change.
We have orders under the Legislative Assembly setting the time limits for the hearings and the clause-by-clause, and that was agreed to be four weeks and two weeks in between to allow any amendments to be prepared, if necessary.
I think this government has bent over backwards to accommodate the concerns of the opposition parties and I think it ill behooves the Liberal Health critic to come to the committee today and say, "Well, we're not prepared to proceed unless we have the ministers there."
Mr Curling: Having listened to Mr Winninger, I'm surprised that he made those comments. First, what I heard from you is that the minister's too busy to do her job. I'm hearing that for these legislations that are so important, you said it's not necessary for the minister to come, because if she comes -- she's busy at cabinet retreats.
I have been in cabinet and I have carried through the passage of bills, like Bill 51, on which we travelled more so than with this bill. I was at, I would say, 98% of the hearings because it was so important that it was not second hand when the minister got it, because that what's we are elected to do. Then you're saying, what more can she do in that sense.
I feel the motion is quite appropriate. It goes in appropriateness with the fact that even when we were limited speaking in the House, we get an opportunity, here at committee, to question the minister and also to explain some of the statements that are made here or the bill here, the confusion. Each presenter comes before us, states emphatically that he or she is confused, that some of the things are vague and need some explanation, and we get different interpretations. Even when we try to get a second opinion outside of here, we get resistance.
I would say that the government should look very, very carefully and stop this blockage in order for us to dialogue properly, and get the minister in here so we can ask her some questions.
The Chair: Thank you, Mr Curling. It seems that we're going to be getting into quite a discussion on this and I was wondering if I could have unanimous consent of the committee to defer this until after the last presenter this morning, in fairness to our witnesses who are waiting. Do we have unanimous consent? Agreed. Thank you very much.
ONTARIO ASSOCIATION OF DEVELOPMENTAL SERVICE WORKERS
The Chair: I'd like to call forward our next presenter from the Ontario Association of Developmental Service Workers. Good morning. I apologize for the delay. Just a reminder that you'll be allowed up to a half-hour for your presentation. The committee would appreciate it if you'd keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you're comfortable, could you please identify yourself for the record and then proceed.
Mr George Anand: I'm George Anand. I'm the president of the Ontario Association of Developmental Service Workers. On my right is Mr Gus Collins, who's one of the executive members of our association.
I would like to thank the Chair and the committee members for the second opportunity to appear before the committee, to be able to make comments on these significant pieces of legislation.
Very briefly, at this particular time I would like to enunciate some of the most important principles that we presented on my first appearance before this committee. We strongly feel that these pieces of legislation have been on the drawing board for the last 30 years and enough significant discussion has taken place. Of course, these legislations are going to need fine-tuning, but in the meantime, there is a big vacuum that exists and that vacuum needs to be filled on an urgent basis. That kind of a vacuum is doing more disservice to the clients, to the service providers, to the families and to the practitioners.
What I suggested in the beginning was, let's go ahead and pass these pieces of legislation and then come back after three years and review these legislations from the point of seeing whether you can make them less legalistic, and then to have a common bureaucratic response to the certain overlapping areas on those three pieces of legislation and then hope to have a common bureaucratic response on certain overlapping areas.
Last time I was quite heartened to hear that one of the most significant communities are the ethnic communities, and those ethnic communities are the least organized and the least informed. What I understand is that their viewpoints would be taken into consideration so that they will have some fair representation on the advisory board on the Advocacy Commission. Since the last time we made the presentation, I've come to know the service providers, who are social service providers; we were glad to know that they will be playing a part on the advisory board. That was a significant step.
Further, we felt we are a growing organization of direct care service providers. We are the service providers who form the first line of support services to the so-called vulnerable individuals, and it is very significant. What we found out from our experience is that if there are any gaps in service that exist at the other areas, it's left to the direct service providers to fill up those gaps, using their own ingenuity. But as a growing organization, we are making sure that our members are fully trained, have certain guidelines to see that the individuals whom they are working with are empowered to make more autonomous decisions on their part and to provide these individuals with the kind of support systems that are going to enhance them to lead a more enriching life.
We are concerned that with these new pieces of legislation, there are definitely going to be more demands. That's going to tax the resources of the direct service providers. We take the challenge, but at the same time we would also like to caution that there should be adequate resources there so that the service care providers, who form the first line of support systems, are not in the position where, by providing one side of support systems, they are overlooking the other side of support systems because of inadequate resources.
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Adequate resources are a very significant area. There's going to be a very wide role for advocates in terms of systemic advocacy, the rights advocacy and the case advocacy. There should be adequate resources provided to the Advocacy Commission so that the advocates are able to fulfil their mandated role.
Last, in terms of commenting, yes, we were perplexed when we looked at the age thing. When we were going through the act, when we interpreted it, we felt that at one time maybe there was no age consideration and that the common law principles were going to be the most dominant ones. Then we looked at the consent to health act, and there we felt that the age of 12 years or more; then on personal care, we looked at the age of 16 or more.
We also felt that one of the major areas under which the decisions are going to be made is for the so-called vulnerable individual's ability to comprehend instructions, but then we felt there were certain emotional maturity levels that play a far more dominant role. It's quite comprehensible that a 10- or 11-year-old may be able to understand the instructions better than the 12- or 13-year-old. Again, what we felt was that the 12- or 13-year-old may be able to comprehend, they may be competent, but may not be emotionally mature enough to make certain decisions. Maybe that's the way we are interpreting.
We are struggling to understand, in terms of the different age patterns we are seeing, which ones we should be adhering to. We strongly feel that the emotional maturity consideration and sometimes the need to provide certain necessities to individuals for certain treatment considerations are some very significant considerations.
Once again, to repeat myself, we still believe very strongly that there has already been significant discussion on this business or legislation, but at this particular time, we feel that prolonging the conversation would be doing more of a disservice.
Mrs Sullivan: I'm interested in your proposal that there should be a review of the legislation in a specified time period; you suggested three years. Is your recommendation to the committee that there be a clause included in the Advocacy Act that would require statutorily a review of that legislation within a specific time frame?
Mr Anand: Yes, we did make the recommendation. It should be seen, because it's a very new piece of legislation. Building up that kind of mechanism could very well be one of the ways, if those pieces of legislation are going to be reviewed after that period of time, to iron out the wrinkles.
Mrs Sullivan: Do we have time for a second question?
The Vice-Chair (Mr Mark Morrow): Yes.
Mrs Sullivan: You've indicated that you feel the effect of Bill 74 will be to place more demand on the direct service worker, and you're asking for additional resources for existing support services as well as for substantial resources for the Advocacy Commission. Many other groups and organizations have asked for a consultative process on the development of regulations and on the implementation, and we've had no information from the government or indication that this is the route it intends to go.
The feeling certainly is, whether it's health care or social services delivery, that these bills will create substantial change in the existing system, and I'm wondering if you support the position of the other groups that also demand a consultative process involving health care practitioners and others in an implementation process.
Mr Anand: Again, to be most candid, I think we still have to go through the process at this particular time to see exactly. This is one of the areas where we feel most probably there will be more demands placed, that of extra service providers, but to what extent?
Moreover, we also feel that the role and the responsibilities of the social service providers most probably would be going through some kind of change. It would be evolving; it would be something different from the kind of role they're playing right now. We're not quite certain at this particular time exactly to what extent the need is going to be. But what we'd like to be able to do is to provide guidelines to our members so that they are in a position to provide the adequate support systems to individuals. So far they have been able to use their ingenuity in terms of filling any gaps in service that have existed at some other end, but at the same time I think we will be keeping track of the extent and the degree of resources that are going to be needed. We are not quite certain at this particular stage, but we do have a feeling that most probably it is going to demand more resources.
Mr Jim Wilson: Following on what Mrs Sullivan just asked you in terms of resources, you began your presentation by saying that there's been enough debate -- and you're right; it's gone on for many years -- and that we should proceed with this legislation immediately. Then the question of cost and resources does come up. As you know, it's a non-subject here; we're not really allowed to discuss it at this committee because the government keeps telling us, whenever we ask any questions about it, "It's all under review and there's a study coming out." I don't know when; I guess after we pass the legislation.
To me that's irresponsible, and I can't justify that to my constituents. I don't know what riding you live in, but they'd laugh at me if I came to them with a package that didn't have costs attached to it in this day and age. It's one of the first questions they ask.
In light of that -- and you mention a sunset clause, a review perhaps in three years -- maybe a better preference would be to phase in this legislation and ask the government at a particular point, maybe six months from now or whatever, to tell us exactly what financial resources and people resources it is going to put into this legislation.
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Mr Anand: When we look at these three pieces of legislation, the substitute decision-making, the consent to health, the advocacy, they are so much intertwined with each other that we feel all three of them should be passed at the same time, because with the consent to health act, they are definitely going to need substitute decision-makers in certain situations, and they are definitely going to need the service of the advocates in certain situations.
Of course, in the administration and the day-to-day working of the consent to health act, if those resources are not there, I guess that's definitely going to cause a problem. We feel that all three of them should be passed at the same time.
Ms Jenny Carter (Peterborough): You raised the question of a review, and of course this act isn't cast in stone. Obviously, we shall be looking at how it works and what parts of it work better than others. I know of no plans to review it at a set date, but certainly that is something we shall need to bear in mind, so that is a helpful suggestion.
The question of resources: As far as the act goes, we are employing probably around 150 people to be advocates, and we're also incorporating volunteers. Obviously, it's assumed there is a network of social services there, otherwise the advocates wouldn't be able to help people because the bricks and mortar and the staff and so on wouldn't exist. But it seems to me it's not the job of these acts to deal with all that. That will come under things like the long-term care provisions and so on as to what accommodation is available to people with certain disabilities and so on. So I see that as being a rather separate question to what we're looking at as far as, certainly, Bill 74 and probably the others are concerned. Of course you're right that advocates won't be able to function unless the resources are there, but as I say, I don't see that that's a part of these acts or that it should be.
You raised the issue of the reduction in the age from 16 to 12. I think this is something that's been overemphasized. We haven't actually made a big change. My understanding is that we've just said that a person of 12 or upwards can get rights advice if they're declared incapable. Could we get some expert opinion on that which might enlighten you, please?
Ms Auksi: I should clarify that the reference to age 12 is not to change the previous version to say that there's a presumption of capacity at age 12; there isn't. What has been done is that all presumption of capacity or incapacity has been removed, the old section 8. The reference to 12 is that it's at that point that if there is a finding of incapacity, then the person is entitled to certain rights information.
Section 10 sets out, if it's a controlled act in certain facilities and so on, at what level you'd actually get a meeting with a rights adviser if you want or if you object to the treatment. But the reference to 12 is only when the rights information kicks in, so there's no presumption of capacity or incapacity now in the bill.
Ms Carter: Does that help to clarify?
Mr Anand: It does to a certain extent, but as I understand it, those common-law principles are still going to be the most dominant ones we take into consideration regarding emotional maturity.
Ms Auksi: That is important too, and I think you alluded to that in your presentation: that there's no reason to think that the notion of capacity has to do with a certain IQ, for example, or only until actual development. Obviously, with young people, there is a certain maturational development involved; with people with mental disorders or emotional difficulties, there are certain other factors that must be taken into account.
We certainly would hope that in consultation relating to the regulations that are to be developed on the findings of incapacity there would be input from the health practitioners who would be making these findings to help to ensure that what needs to be in regulations to trigger some of this thinking in practitioners would be in place without getting into areas that get so changeable or so detailed that they would in fact hamstring the practitioners in making good judgement calls.
The Vice-Chair: Thank you very much, Ms Carter.
Ms Carter: Do I have time for one more point?
The Vice-Chair: Ms Akande would like to ask a question.
Ms Carter: Okay.
Ms Akande: Thank you very much. I wanted to ask again, because I'm not certain about your answer, whether your association would see itself as wanting to have a consultation process around the development of regulations which accompanied these bills.
Mr Anand: Yes, we would definitely like to be a part of them.
Ms Akande: I wasn't sure. I know Ms Sullivan asked that question; I wasn't quite sure of the response.
The other thing I'd like to refer to is, you have mentioned changes to the way in which your workers will operate. You have said that there will be more work. I want to know on what basis you feel that the change will constitute more work for your association members rather than different work or less work.
Mr Anand: That's one very good point. Definitely we can see the different roles and responsibilities that are going to be faced by our members. But at the same time, in view of this legislation, we can see the different kinds of demands we will face because of some of the practices that have been there in terms of behaviour modification, aversive conditioning etc. We agree that those particular modalities have been removed. We are very glad that no individual rights or freedoms should be impinged upon in that manner without a certain due process. What we're saying here is that our members are definitely going to be able to provide more one-to-one care for those individuals who are facing those moderate to severe kinds of problems.
Ms Akande: All right. Then you do agree that it may well be that with the implementation of this particular legislation your workers may work differently but not necessarily more.
Mr Anand: Differently, we definitely feel, yes. We are in the process of laying down guidelines or preparing our members. There are going to be different responsibilities. It's a different kind of framework to work under.
The Chair: Mr Anand, Mr Collins, on behalf of this committee I'd like to thank you for taking the time out this morning and giving us your presentation.
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EASTER SEAL PARENT ADVOCACY COMMITTEE
The Chair: I'd like to call forward our next presenter, from the Easter Seal Parent Advocacy Committee. Good morning. Once again, just to remind you, you'll be allowed up to a half-hour for your presentation. The committee would appreciate it if you'd keep your comments to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you're comfortable, could you please identify yourself for the record and then proceed.
Mrs Ludmilla Donald: My name is Ludmilla Donald and I'm a parent of a disabled child. I'm also the chair of the Easter Seal Parent Advocacy Committee. You heard from the Easter Seal Society earlier this week, I believe. We are a committee of parents who have been spawned and sponsored, in effect, by the Easter Seal Society. We are a volunteer group. We are certainly not funded to do any extensive analysis of these bills and therefore we have focused our concerns on Bills 74 and 109. We have not, unfortunately, had the opportunity through our own limited resources to be able to do an in-depth analysis on every section. Therefore, my comments will be on the selected sections that most disturb us.
We represent parents of 7,900 physically disabled children and youth in Ontario, and our submissions are also confined to those children who are under age 16. We filed written submissions on September 26, 1991, which outline in depth and in much more of a narrative way the difficulties faced by families and children we represent. We were here in February and presented oral submissions and a brief written submission to this committee. I hope you ladies and gentlemen have received the synopsis of my comments today. They are dated August 13. I will follow fairly closely what is in the written submission.
We are very disappointed that Bill 74 still does not give systemic advocacy to children under 16. This is the item that we are most concerned about as parents of these children and that we believe is required to the greatest extent. If this government were going to do anything for these children, we would have suggested that systemic advocacy in some form be provided.
The amendments to Bills 74 and 109 do not rectify or even address the root problem of the legislation -- namely, that it applies to the majority well-treated population of children under 16 extraordinary and invasive procedures which are more appropriate to those children who suffer abuse through medical treatment. Most disabled children are cared for by informed and loving parents who make treatment decisions in concert with concerned, capable health practitioners. Some of the extraordinary adversarial procedures established in the legislation and which are applicable to the majority population are reviewed below.
Subsection 3(2) of the bill makes applicable to children under age 16 provisions giving rights advisers -- that is, advocates of a certain form -- exceptional rights of entry. These rights of entry are excessive and inappropriate when applied to the majority population. The advocate's vague belief that a child wants his or her services is not an acceptable basis upon which to grant him or her the automatic right to enter a facility, a controlled-access residence or a private residence without a warrant, nor is it an acceptable basis upon which a warrant of entry should be issued by a justice of the peace.
Should a parent refuse the advocate entry to his home or otherwise deny him access to the child, the parent may be found guilty of an offence either under section 34 or for denying entry under a warrant. These penalties have absolutely no moral or logical justification when applied to the parent who believes he is acting in the very best interests of a child whom he loves.
ESPAC states that the advocates' rights of entry can only be warranted and justifiable in situations where there is a serious apprehension of child abuse through medical treatment and that accordingly these matters are best dealt with in legislation specifically designed to remedy cases of child abuse.
ESPAC states that when applied to disabled children under age 16, the proposed rights of entry are unwarranted and a direct erosion of the rights of citizens in our society to privacy and property.
ESPAC states that in the absence of child abuse the proposed rights of entry interfere with the parent's right to settle the question of medical treatment directly with his child. They will create a destructive, inflammatory situation where the child may be witness to coercion of a parent, possibly with the presence of the police.
Despite the enormous impact rights advisers will have on the lives of disabled children and their families, Bill 74 denies children representation on the Advocacy Commission. ESPAC repeats that children should be represented by those who care for them, know them best and are the secondary consumers of the legislation -- namely, their parents.
Section 10 provides for the appointment of an advisory committee to include family members of vulnerable persons over age 16. ESPAC objects to this section as written for two reasons. The committee is not appointed by the Advocacy Commission but by the minister. If the commission is to be truly independent, as promised by this government, it must have full control over the appointment of those from whom it seeks advice. Second, children under age 16 will again not be represented on the advisory committee.
Clause 7(1)(k.2) gives the Advocacy Commission the right to establish complaints procedures relating to advocates, but only with the approval of the Minister of Citizenship. ESPAC states that the commission should again be free and independent to address regulation of its advocates without the minister's involvement or veto.
In regard to Bill 109, pursuant to section 9 of Bill 109 the criteria standards procedures applied by a health practitioner in assessing capacity are still left to be determined by unknown regulations. This crucial and fundamental element of the act ought to be clearly set out in the draft legislation so that it is subject to public scrutiny. It should not be hidden from public knowledge and debate.
Similarly, section 10 leads to prescription by regulation of the complete list of health facilities and the full enumeration of controlled acts the existence of which will trigger a mandatory written notice to the child and notification of the rights adviser. The public and all interested parties are currently deprived of the opportunity to examine these matters which set the conditions for bringing an application before the Consent and Capacity Review Board.
Although section 10 ostensibly restricts the intervention of a rights adviser to children over age 12, subsection 10(13) empowers a child under age 12 to apply to the board to challenge a finding of incapacity. ESPAC repeats its strenuous objection to the application of adversarial procedures to all children under age 16 and most certainly the very young, under age 12.
ESPAC believes that the majority population would be best served by investigative and counselling procedures to reassure fearful children or to bridge gaps of understanding between the child on one hand and the parent and the health practitioner on the other. Applied to the majority population, the procedures now proposed will be destructive to the parent-child relationship and will severely impede treatment delivery to disabled children.
Pursuant to subsection 10(8), "The rights adviser's explanation is sufficient, even if the person does not understand it." Pursuant to subsection 31(1), a person is deemed to have the capacity to instruct counsel in a hearing before the board. It is remarkable and anomalous that a child who cannot understand the purpose or implications and consequences of applying to the board is presumed to be able to direct a lawyer in the conduct of proceedings before the board and before an appeal court. The disturbing reality is that an appointed lawyer who is a total stranger to the child and his circumstances will decide how to conduct the hearing and whether an appeal from the decision will be taken or defended.
ESPAC submits that no lawyer should be given such powers. I, ladies and gentlemen, professionally am myself a lawyer, and as a parent and as a lawyer I repeat that no lawyer should be given such powers. To do so is a step beyond the bounds of reason and common sense, particularly where the proceeding is brought to challenge the decision of a responsible, informed parent regarding the medical treatment of a child.
Pursuant to section 26, parties to a hearing before the board to review a finding of incapacity are the person, the health practitioner and any other person the board specifies. ESPAC strenuously objects to the exclusion of parents as automatic parties to the hearing. Parents of children under age 16 must have a clear, automatic and unequivocal right to be parties and consequently to have the right to present their evidence, make their submissions and test the position of the lawyer appointed to represent the child. The board ought to have no discretion whatsoever in this regard.
Parents, more than any other persons, have an interest in the outcome of the hearing and any appeals therefrom. They have a moral and legal obligation to do what is in the child's best interest. It is they and their children who must live with the impact of the decision. Anything short of a clearly stated right of a parent to be a party is absolutely unacceptable to ESPAC.
Under section 26, the health practitioner ought to have the status of a witness only and should not be made a party to the hearing before the board. The proposed section obliges the practitioner to take on the burden and the risk of litigation in a proceeding or multiple proceedings in which he or she has no direct personal interest. In addition, the bill is silent on who is to pay for legal counsel for the practitioner, leaving the untenable implication that he or she must retain counsel at his or her own expense.
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Pursuant to section 41, only a party to the hearing before the board may appeal the decision. If a parent is not appointed as a party, it appears that the health practitioner must decide whether an appeal should be taken or defended in a case in which he or she has no direct interest. Similarly, the question remains whether the practitioner is obliged to retain and pay for legal counsel to conduct an appeal.
In summary, ESPAC submits that the proposed amendments will not remedy the glaring inadequacies of Bills 74 and 109. Instead of assisting disabled children and their families in obtaining necessary health treatment and services, they will produce the opposite effect of imposing additional emotional, financial and practical difficulties on those already burdened to their limit.
The Chair: Thank you very much. First of all, a clarification.
Mr Malkowski: I just want to clarify in terms of access, and I'll refer that to the ministry person.
Ms Mary Beth Valentine: To refer to the concerns you've expressed about access and penalties, the due process requirements of rights advice, as required by other acts, are the only advocacy that refers to children under age 16 in Bill 74, so much of the concern you have expressed is basically irrelevant, to the extent that a child under the age of 16 will not have access to an advocate. The only requirement is if there is rights advice required in relation to the consent bill or the guardianship bill. My colleagues may wish to further address that.
The issues for penalties are clearly not in relation to private premises; they're for facilities in controlled-access residences.
Mrs Donald: With respect, if you look at sections 17 and 18, it is not at all clear to me in reading those sections that the penalties do not apply.
Ms Valentine: In section 34, it clearly states that it's related to controlled-access residences and facilities. I should clarify for you that I'm not counsel, so I'm not giving a legal opinion, but I'm giving you the interpretation.
Mrs Donald: I have a very difficult time reading those three sections together. I have come up with a number of interpretations, one of which, as anomalous as it may seem, is that penalties may apply if a family lives in an apartment and may not apply if they live in a private residence. That's one interpretation I come up with. Then there is a part of section 17 which incorporates section 18, and in my view -- for what it's worth -- I'm not at all clear that parents will be absolved from penalties if they do not allow a rights advocate entry into their premises.
Ms Valentine: I can assure you that is not the policy intent, but I will ask legislative counsel to review it again. We've been assured that is not what it says, but I will take your concerns back. I will assure you that is not the policy intent.
Mrs Sullivan: Once again, this last interchange has just pointed out the very issue we were discussing earlier today, and that relates to the absence of legal counsel for the Ministry of Citizenship and the absence of the minister herself. I really think that's inadequate.
This is a very good brief. I think at the beginning of your remarks you indicated that you didn't have a lot of resources in terms of preparation and analysis, but you've done an awfully good job here.
One of the areas we're going to request further clarification on from Health counsel, if they're ever around, relates to subsection 10(13) and the issue you've raised indicating that this section does empower a child under 12 to apply to the board to challenge the determination of incapacity. We would also like clarification and a further discussion with the committee with respect to the section relating to standing before the Consent and Capacity Review Board, which I think you've discussed very well in this document.
We've certainly had representation from health care practitioners with respect to questions associated with their being included as having standing before that board. Dentists raised it yesterday. Are they going to have to leave their practices, by example, to appear before the board, and is that an obligated duty? Other groups and organizations have also raised the issue of the standing of parents, and the children's aid societies have raised that issue as well. We'd like to have further discussion with counsel and, frankly, with the minister with respect to that issue.
This is a very good brief and we'll follow up further along. I don't have any further questions because I think what we need now, frankly, is some responses.
Mr Jim Wilson: Thank you, Ms Donald, for what I also think is a very excellent brief.
I think the government's splitting hairs on whether, when you're under age 16 or 12 and above, you have automatic access to a rights adviser if need be, but you don't necessarily get an advocate. In the first round of the original draft of this legislation we had advocates in all legislation, and then Bill 109 was changed to the rights advisers. Now we're told that if someone has a rights adviser and asks for something that may require advocacy, the rights adviser has to stop and say: "No, I'm not an advocate. Wait. I'll get you an advocate." So we have two people showing up at one location to do what was one person's job before.
I don't think you're off base at all, and I think the response from the bureaucrats and from the government is really playing around with words. It may be clear in the government's mind about the difference between a rights adviser and an advocate, but it's certainly not clear in my mind, and I'm almost positive it won't be clear in the minds of most consumers after this legislation is passed.
I did want to ask you one sweeping question. Would you say, as a general rule, that the government should just butt out of people's lives who are under age 16?
Mrs Donald: As a sweeping statement, I would say yes, with this caveat: that we at ESPAC also see a need to protect young children under 16 who will suffer abuse through medical treatment.
But what has happened with this legislation, in the government's, I suppose, intense desire and perhaps haste to protect this minority, is that it's cast an enormous net and it's catching ordinary citizens -- to use the vernacular -- where it has no business being and it will be interfering with parent-child relationships.
We at ESPAC are extremely protective of our children. The majority of parents are extremely protective of their children. They do not make medical treatment decisions lightly. For some of the treatment these children get, the decisions are made over periods of years and involve a course of conduct and a course of treatment, as opposed to one isolated treatment.
It seems to me that this legislation is inappropriate to those. We do not say this legislation is totally inappropriate to everyone. That is not our function or our purpose in being here. We are saying, please do butt out of the normal family situation of the parent and the disabled child.
Mr Jim Wilson: You describe in your brief the normal family situation. You call that the majority.
Mrs Donald: I do.
Mr Jim Wilson: Given the legislation as presented and before us today, do you have any specific thoughts on how we can fine-tune it so that it really does address the need of the minority or the few children who may need protection?
Mrs Donald: I suppose my sweeping recommendation is that if any legislation has to be amended to include abuse through medical treatment, it would probably be the Child and Family Services Act. That's where this matter can be addressed without touching everyone else.
The other thing I think should be done is to provide systemic advocacy for these children and for all children. We had hoped that would happen under Bill 74. If systemic advocacy is undertaken, then maybe what will happen is that we will be able to streamline the service delivery and we will be able to find where abuse and abusive situations are likely to crop up. If that sort of advocacy is undertaken, then over a period of time I think you will be able to better identify where, in the normal system, unhappy circumstances occur, even with the presence of a competent health practitioner and a loving parent.
Mr Jim Wilson: Thank you. That's very helpful.
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Mr Sterling: As you hear more and more about Bill 74 and the other acts, you begin to go back and you start to say, "Maybe I'm looking too much at the trees and not enough at the forest."
You would be familiar with a lot of family situations where there is tremendous pressure on the family because the children have significant disabilities. In your opinion, are there enough safety nets out there to make certain, either in a family or outside a family situation, that a child is not going to be maltreated?
Mrs Donald: I think that applies to all children, though. I don't think it applies any more to disabled children.
Mr Sterling: But I think there may be more pressures on the family because of the extra burden.
Mrs Donald: Well, let me put it this way. I don't think that is a factor to be considered in this particular legislation.
Mr Sterling: Okay, that's fair.
Mrs Donald: I can also say that where abuse -- I gave an example the last time I was before this committee. Take, for example, the child who needs a number of different surgeries. I have a little boy who needed spinal surgery and eye surgery. This is a systemic problem. There is no case manager in the medical community to do this; you end up being a case manager yourself. So you're sent off to the ophthalmologist; you're sent off to the neurosurgeon.
What if the neurosurgeon said, "This month we're going to do the spinal surgery," and goes ahead and books it and we've all agreed it was going to happen, and then for some reason the ophthalmologist says, "We're going to have some eye surgery scheduled three months down the road." The fact is that spinal surgery takes three or four months to recuperate from; it's an extraordinarily demanding and painful procedure. Being the parent of a child, I would never, ever allow those surgeries, for example, to be spaced in such a short time.
But I can see where, for example, a parent who maybe has difficulty with the language or thinks that doctors know best or assumes that doctors always speak to each other goes ahead and has this surgery scheduled within, let's say, three months of each other. That, I would say, is an abusive situation. It is not intentional, but it might occur.
So even in this situation, say the child is vehemently saying no and indeed wants to speak to somebody about this, our suggestion is that in circumstances of this kind, the best way to deal with it is not to get a Consent and Capacity Review Board hearing going, with rights advisers and then you suddenly have a laywer appear on the scene and so forth, but rather perhaps a better consultative, investigative and counselling procedure. If then you find that you have a parent who, having gone through that procedure, still insists on subjecting this child to that sort of treatment, then surely the law should protect that child. I personally don't have a problem with it, and I know my committee doesn't have a problem with that.
What we object to is that willy-nilly, without going into any details of the situation, you have a fearful child -- and all children are fearful of surgery, some more than others. Some will express it; some won't. Parents, for example, and doctors spend an awful lot of time preparing a child psychologically for surgery, but it happens. But to willy-nilly thrust these people into an adversarial situation I think is absolutely untenable.
Not only that, but you have to remember that some people bring their children for surgery to the Sick Children's, for example, from other parts of the province and from other provinces. So you've gone through the rigmarole of preparing the child and preparing yourself; people often have to make arrangements for the rest of their family to be cared for. One parent comes to Toronto and suddenly, after all that, finds himself in a situation where he is not only not getting the surgery done but also has to go through a Consent and Capacity Review Board hearing and maybe an appeal.
May I just add to this that I know for a fact that appeals are not easily obtainable in Toronto. You have to wait three to four weeks to get your motion on for appeal, so this is not a quick procedure here.
Mr Sterling: You're saying the Advocacy Commission would be best suited in your instance to do systemic advocacy for children under 16, but otherwise it should stay out of the lives of --
Mrs Donald: For the majority of the population, yes.
Ms Akande: Thank you very much. I'm sure you're tired of hearing it, but it is an excellent brief, and I do appreciate the narrative way in which it's written because it gives me an opportunity to also express that I am not a lawyer.
I am interested, though, and always am, in, what is there in Bill 74 which encourages you to believe that the intent of the legislation, or in fact the way it's written, will allow physicians or encourage them to assume that a child's aversion to pain and reluctance to endure it -- which is very common; you're quite right -- will be interpreted as his or her withdrawing consent for the procedure?
Mrs Donald: I don't understand your question.
Ms Akande: What is there in the way the legislation is written that encourages you, or the group, to believe that the child's aversion to pain -- you've drawn this analogy of a parent bringing a child to Toronto and preparing him, and of course all children, it doesn't matter, you know, are not going to be anxious, but they've been prepared, and when they're confronted with the real thing they will not necessarily be joyous at the prospect of having this painful procedure. What in this allows you to believe that will be interpreted by the physician as a withdrawing of consent where they'd have to bring in a rights adviser etc?
Mrs Donald: As I understand it, if there's a finding of incapacity in any case, and given the limits imposed by those sections dealing with certain types of facilities and controlled acts, the physician will have to give notice to the child of his or her right to speak to a rights adviser. I think I'm right on that.
If that's the case, then I can see a situation where, let's say, a child is very fearful and suddenly the child is told, "I don't think you're capable of making this decision, but you do have a right to speak to a rights adviser." That child then suddenly says to himself: "I've been told by my doctor, by my Mommy, by my Daddy for all these months that I have to have this surgery. Now wait a minute; maybe I don't." The child first of all starts to question the advice and the things his parents have been telling him. I think it erodes some trust right away. It says: "Maybe somebody knows more than my Mommy or Daddy and knows much more than this doctor. I'm going to speak to this person who is the rights adviser."
Does that answer your question?
Ms Akande: It does, and what I was looking for is where exactly it gave that impression, because certainly it's not our intention that this would happen or that the decision of the parent would be eroded, but I'm understanding in general what your response is. I don't find it in the legislation, but I'm going to look back at it and see, because that is certainly not our intent.
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Mrs Donald: I think section 10, the way it's written now, certainly includes that interpretation, my interpretation, of what is to happen, and what is to happen is that given a certain set of circumstances in a certain facility dealing with certain treatment -- I might point out here that certain of the treatments are also to be dealt with by regulation, so in part I don't even know what I'm talking about right now. But given a certain set of circumstances, some of which is unknown because it's to be dealt with by regulation, once the child is found incapable, a child can indeed make clear to a physician that he or she wants to speak to a rights adviser. That is all that is really necessary to get the whole process going.
That child may retract, obviously. There's a section in section 10 that says that if the rights adviser comes along and the child no longer wants to speak to the rights adviser, then of course the process is at an end.
But I would think that a frightened, fairly intelligent 12-year-old, getting wind of the fact that maybe he or she doesn't have to go through this, that maybe Mommy and Daddy are wrong, very well might proceed and ask for a lawyer, once it's suggested to him, or a lawyer can be automatically appointed, and then it's out of the hands of the parents, it's out of the hands of everybody; it's squarely in the hands of a lawyer.
Ms Akande: There is a point of difference --
The Chair: Thank you.
Ms Akande: -- we cannot pursue now because I'm being cut off in time, but I'd like to speak to you after about it.
The Chair: Ms Donald, on behalf of this committee, I'd like to thank you for taking the time out this morning and giving us your presentation.
CANADIAN ASSOCIATION FOR COMMUNITY LIVING
The Chair: I'd like to call forward our next presenters, from the Canadian Association for Community Living. Good morning. You'll be allowed up to half an hour for your presentation. The committee would appreciate it if you'd keep your comments short to allow time for questions and comments from each of the caucuses. As soon as you're comfortable, could you please identify yourself for the record and then proceed.
Ms Diane Richler: My name is Diane Richler. I'm the executive vice-president of the Canadian Association for Community Living. With me today is Kenneth Pike.
I'm sorry, Mr Chairperson, I wonder if I could start with a point of clarification. I had been led to believe that because of a letter that had been forwarded from the Ontario Association for Community Living, which had a shorter time period, we might be allowed a few extra minutes today in order to cover some of the points that hadn't been able to be covered when they were cut short.
The Chair: I discussed this earlier and I said I would allow some flexibility, yes.
Ms Richler: Thank you. I want to thank you for giving us the opportunity to appear before you a second time, and we have tried to do considerably more work in order to have quite different comments today.
Before starting, I'd like to acknowledge the presence in the room today of the new Ombudsman of British Columbia, Dulcie McCallum, who is here as an observer today. You may remember that the last time I appeared representing CACL, Dulcie appeared as a member of our task force on alternatives to guardianship. Since that time, on August 4, she was appointed Ombudsman of British Columbia. We've been having a bit of bad luck with our task force, because she's the second member we've lost, the first one being David Vickers, who was a lawyer who was appointed a justice of the Supreme Court of British Columbia. I've warned Ken that he should be expecting something to happen to him after his appearance here today.
I'd also like to mention that since our last presentation, a more formal coalition has been developing between the Ontario Association for Community Living, which is a member organization of CACL, People First of Ontario and People First of Canada. We have some cross-appointments in our work on this matter. Audrey Cole, who appeared here representing OACL, also chairs CACL's task force on alternatives to guardianship. We have with us in the room today representatives from OACL, People First of Ontario and national People First as well as CACL.
We understand that the point of view we are presenting today, and the point of view of our coalition, is somewhat out of sync with many of the other advocacy groups that have appeared before you.
The first point I would like to make this morning is how CACL, as an organization that was founded in the interests of people who had been labelled mentally handicapped, really had to learn the hard way to listen to those people who have been labelled and to hear what they had to say.
The very first matter self-advocates raised with our association after their first representative was elected to our board of directors was in a matter of sterilization, which ended up being decided in the Supreme Court of Canada as the case of Eve. In that situation, we had been approached by the public trustee of Prince Edward Island to see if as an association we wanted to intervene in a question of sterilization. Our board of directors, while it claimed to represent people who had been labelled, was unable to make a decision because parents felt they should still have some say over the future of their sons and daughters. The self-advocates who were present said that no one but the individual should be able to decide questions of sterilization.
To make a long story short, the ultimate unanimous Supreme Court decision was in favour of the position of the self-advocates, so the law in Canada now is that where a person wants to consent to his or her own sterilization, that's fine. Where they cannot give informed consent, then no one else -- no parent, no friend, no court -- can give that substitute decision for them.
I would ask everyone here who's a member of the committee who has at one point or another found themselves as a member of a devalued group, whether because of gender, colour, religion or disability, to remember what it feels like to be told you just don't understand the point of view of the greater group, and to understand how it feels to People First members and to members of our association who are being told they just don't understand the point of the current legislation.
I'd also like to point out that we've found ourselves at many times in difficult situations where we've had to choose between being true to a larger coalition or representing our own self-interest. A most recent example came about when we were trying to have the Alberta human rights code amended to include prohibition on the basis of mental disability, and at the same time there was a move to include prohibition on the basis of discrimination because of sexual orientation.
At one point it seemed as if the government might be willing to go with mental disability but not with sexual orientation, and what was put to our group was, were we willing to break from the coalition in order to get what we wanted? Happily, we did not break and the human rights act was changed in Alberta to afford protection to all disadvantaged groups. I'm afraid that from our point of view, that's the choice other advocacy groups in Ontario are going to have to make now, whether to fight for the greater good or to focus on their own self-interest and take what they can get now.
In terms of the specifics of our proposal, we have tried to look at the particular amendments you've put forward. We understand that careful consideration was given to many of the points we made last time, and we have gone back and taken our position considerably further.
I'd like to turn to Ken Pike and ask him to make some detailed comments on our brief, and then I would like to just make a couple of closing comments. I'll mention that Ken is a lawyer. He is from New Brunswick, where he is project coordinator of the older parents project of the Fundy regional council of the New Brunswick Association for Community Living.
This is a three-year project, funded by the Donner Canadian Foundation and the Department of National Health and Welfare, which was established by older parents who were starting to ask the question about what the future would be for their sons and daughters when the parents would no longer be there to protect them. Ken also has a brother who's been labelled mentally handicapped, so he's here in his dual capacity as a family member, as a lawyer and as a member of our task force on alternatives to guardianship. Ken, I'll turn it over to you.
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Mr Kenneth Pike: We appreciate that what is before you today in our submission is lengthy and detailed and that you haven't had time to read it yet. We'll try to summarize it as best we can today. At the back of your document there is a diagram, which I'll be referring to in a few moments, which tries to capture what we're talking about. Our submission represents the development of thinking of our association and particularly the members of the task force on alternatives to guardianship.
We have long held the position philosophically that there is fundamentally something wrong with guardianship. Up until this time, however, we have not been able to offer anything as an alternative. We feel at this point, though, that although our document and our task force mandate have not been completed, we are well on the way to providing something that we consider to be a positive alternative to guardianship. I would add the disclaimer that some of these issues are still under discussion by our task force and that the contents of the document may change somewhat when the final report is delivered in October.
It's important to come back to the description of traditional guardianship legislation, which Bill 108 certainly falls under, as a necessary evil. Our question is, if that's the best description we can give to guardianship legislation, isn't it incumbent upon us to find a different way?
That traditional kind of guardianship is based on certain assumptions that we reject, those assumptions being that self-determination and autonomy are valid if people are able to exercise those rights independently, that some people are of lesser value than others and that some people are incapable of expressing wishes and choices.
The consequences of those assumptions on which guardianship laws are built are that people are assessed and categorized on the basis of their perceived inabilities to perform to prescribed standards; people lose their legal and social status as individuals within the broader community. Guardianship exacerbates disability. People with disabilities are already discriminated against and face the double jeopardy that social and legal processes will strip them of their rights completely.
Who benefits from this? We don't think anybody benefits from this, except perhaps in the short term maybe third parties who require an authorized, legally recognized decision-maker to justify their actions. But I think it's important to remember that everyone in this room today can end up within this process, whether because of illness, injury or old age, and we should ask ourselves, would we rather be assessed and replaced or would we prefer that society take a more human approach that would support us and enable us to participate?
What we are proposing in our submission today is what we call a new paradigm for decision-making. It is a new paradigm because it's a different conceptual framework which rejects the assumptions and the framework of the old paradigm. In our view, the new paradigm accepts that every individual is a person of value, that each person has a will and an ability to express desires and that decision-making is often a communal and interdependent process, not simply an independent process. This new paradigm obliges us to listen to people who have heretofore been excluded from participating in matters that affect their own lives. We must overcome our limitations as a society to listen to people.
On pages 4 and 5 of our brief, we mention some of the other principles on which this new paradigm is based, recognizing that people require personal support when making choices and decisions. Support may involve providing advice or information, discussing options and consequences, communicating an individual's wishes or decisions to third parties or interpreting the will of an individual, but all forms of personal support shall empower the individual and give effect to his or her wishes and desires and be free from conflicts of interest.
People are interdependent and the law must respect and recognize this and give status and validation to decisions which are made with the support, affection and assistance of others. The cornerstone of what we are calling supported decision-making is the existence of a trusting relationship between the person receiving support and the person giving support. Where the person is isolated from his or her community, for whatever reason, there is an obligation on the state to provide whatever resources are necessary to reconnect or connect that person within the broader community.
Also, the law must not discriminate on the basis of perceptions of a person's capacity and competence. All law must be consistent with the values, principles and provisions of the Canadian Charter of Rights and Freedoms. The interests and concerns of third parties must not lead to an infringement of a person's right to make choices. Such interests and concerns must be dealt with in ways which are consistent with these principles. Lastly, no individual should be assessed to determine his or her competency or capacity. We feel that the only things that should be reviewable are individual decisions.
To bring this new paradigm of supported decision-making into being, we have to look at a new form of legislation, what we are calling enabling legislation. We need laws that will enhance rights and participation, not take that away. Laws must reflect an ethic of compassion, understanding and interdependence, recognizing that enabling legislation for people with intellectual disabilities will be the ramp that building codes and access laws are for people with physical disabilities.
The laws that have been designed to overcome disadvantage, whether we call them enabling legislation or equitable legislation, are not new. There are various forms of legislation currently in this province -- pay equity, employment equity and duties to accommodate within human rights legislation -- that are also designed to overcome disadvantage.
Within the context of supported decision-making, we feel that enabling legislation should have some basic characteristics. A statement of intent or purpose would be contained in a preamble, as well as the principles that we referred to earlier. There must be a validation and recognition of supported decision-making as a legitimate means of making decisions, and there must be an explanation of supported decision-making, including provisions which establish how those providing support will be legally recognized.
The legislation should set some general parameters for supported decision-making, as well as outline some duties, obligations and procedural ground rules for those providing support. There must be other enabling provisions within the legislation that would overcome specific existing barriers to decision-making and participation, and we will refer to those in a minute. There must be provision for state-funded mechanisms to connect people who are isolated from their communities and facilitate informal networks of support.
The legislation must also provide a positive duty on the state to maximize the availability of communication mechanisms. It must also outline how decisions will be made by people who desire or require support but who have no one to assist them, and it also must provide measures for safeguards in accountability for the process itself, as well as forms of adult protection.
All of this legislation should also be supplemented by what we call a statutory audit and omnibus legislation which would bring other forms and pieces of legislation in line with the enabling legislation for supported decision-making.
I will briefly make a few comments on how we envision this new enabling legislation will work. If you would refer to the diagram at the back of your submissions, it is important to make note that the individual concerned is at the centre of the circle; it is our opinion that in a guardianship model, the guardian would be at the centre of the circle and the individual would be somewhere on the periphery. Around that person is his or her informal support network: family, friends, neighbours and people with whom he or she is in contact. What the legislation must do is give some recognition to that informal network so that the decision-making which occurs within that interdependent process becomes valid in the eyes of the law.
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We are suggesting three ways by which people can be recognized under enabling legislation: first, by designating in writing whom the person would want to have as his support persons, which is more of a traditional type of recognition; second, by indicating a desire through non-traditional forms of communication which are documented and validated by independent witnesses; third, and important, by recognizing the existence of trusting relationships between people, which may be particularly important for people who have very limited communication abilities but do have, as we feel all people have, the capacity to trust others. So we recognize those trusting relationships as a valid way of making interdependent decisions. We feel this kind of process would be inclusive and not exclusive.
Once the support network is recognized under the legislation, the network will be obliged to perform to certain standards of conduct. Those standards are mentioned on pages 8 and 9 of our brief. They are basically designed to ensure that those people who provide support make all reasonable attempts to find out the desires, wishes and choices of the person receiving support. Supporters will be obliged to use all available aids to communication, respect the individual's wishes as to how much and when support will be provided, remember at all times that the role of the supporter is not the substitute decision-maker, not benefit from the position and be free from conflict of interest.
In the diagram, on the circle beyond the "recognized support system" circle are various kinds of decisions which the interdependent process will be involved in: financial property, economic participation, medical and personal care. We envision that there will be a need in some circumstances for some procedural ground rules to safeguard and validate those decisions in the process. Those kinds of ground rules may involve the preparation and signing of declarations on the part of support people.
We also feel there may be a need to build into the process some limitations on the kinds of decisions which can be made, in particular those where the risk of misinterpreting the wishes and desires of the individual would cause great harm or disadvantage, such as in the cases of sterilization and organ transplants.
An example of how this system would work is provided in our submission in two circumstances: in particular, the entering into contracts by individuals, and the informed consent for medical decisions.
Under the contract situation, which is significant from the point of view of economic and social participation where the law presently provides a barrier because of requirements around being able to understand the terms and conditions of the contract, we don't propose that we throw out the old law of contracts. We are proposing that it be modified to enable individuals to make decisions with the support of others. So in that circumstance, in regard to the person and his or her support network, the terms and conditions of the agreement would be understandable within that network, but that contract would be seen to be the contract of the individual and not the support network. The only case where the individuals providing support would be liable under the contract would be where there would be fraud or misrepresentation on their part. We are suggesting the same kind of process for medical decisions as well.
An important part of this model is what we're calling the checks and balances, the safeguards. The built-in safeguards will be the standards that will be imposed on people providing support, the limitations and the kinds of decisions possible and some public education on what supported decision-making is and how different it is from substitute decision-making.
We are also proposing some kind of external review process which does not assess the individual but is there to hear challenges to specific decisions or people who may be providing support. That review process may also be able to mediate conflicts. We also envision the need for adult protection legislation which will balance the need for protection against the rights of the individual to take risk.
That is a very brief and concise review of the model. Diane Richler would like to make some closing remarks and then we would be prepared to attempt to answer your questions.
Ms Richler: One point that I'd like to make before concluding is just to inform you that at our presentation we raised some concerns that arose out of the report of the Royal Commission on Electoral Reform, which we thought might suggest that people in Ontario who are under some kind of guardianship order would be denied the right to vote.
I'm pleased to report that because our interests were raised with the Secretary of State, who was in the process of drafting omnibus legislation, a change has been made to the Elections Act that clearly states that all Canadians have the right to vote, regardless of disability, and there's no longer any opportunity for discrimination on the basis of disability. I just wanted to make sure that you have been brought up to date on that.
In closing though, I submit to you that I certainly understand that the detailed proposal we have come with today is quite radically different from the models that are proposed in the legislation you have had under review. I would ask that you consider them with the same seriousness that you've considered other suggestions throughout this whole review process and hope that despite the momentum that's behind the current proposed legislation you consider what the implications might be of implementing our approach.
If you feel that you're too committed and it's impossible to completely stop the process, we would ask that you at least consider a pilot project or a demonstration of the kind of model that we've proposed, similar to the kinds of diversion programs that the criminal justice system has put into place, so that you test the ideas and compare them with the more traditional models that are being proposed.
Further, regardless of whether you are able to support our model completely or whether you are able to recommend a more limited application of it, or even if unfortunately you decide to go ahead with the proposals that are now before you, we would ask that you build into all of the legislation before you a requirement for a statutory review within three years in order to assess the implications of the new system that's put into place, whatever it may be.
We've had experience at the federal level with a similar statutory review having been built into the Canada Evidence Act, and that's providing a wonderful opportunity for research on the changes to the act and what the implications are, certainly for people with a disability, and we ask that such a review be done in a way that would have the kind of detailed research that would be necessary to really evaluate whatever new program is put into place.
I'd like to just make one comment about the fact that because of the potential danger of guardianship that we've identified, we've certainly put the emphasis of our proposals to you on that aspect of the legislation before you rather than on the advocacy legislation. I would just like to reiterate our concern with the advocacy legislation. We certainly recognize the need to empower individuals, their personal support groups and their organizations, but we firmly believe that it's not necessary to set up alternative structures and are particularly concerned with the potential of the lion's share of disability money going to the Advocacy Commission rather than trying to fix the problems that we're aware of in terms of the number of people in institutions, poverty and exclusion from schools.
My last comment is just to let you know that we've been approached by the Deputy Minister of Justice in the Yukon, alerting us to the fact that one of the legislative initiatives for the spring session is to prepare legislation around supported decision-making and indicating her intention to contract, in collaboration with CACL, to develop that legislation.
We fully believe that the government of British Columbia, in the selection of its new Ombudsman and given the review that's going on of its guardianship legislation right now, will be moving in the direction of supported decision-making and we hope that Ontario will not entrench an outdated model that will put it behind other jurisdictions in Canada instead of ahead.
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The Chair: Thank you very much. Questions and comments?
Mrs Sullivan: This is an interesting presentation and follows on the interventions that we have had before the committee from the Ontario Association for Community Living, as well as your own. I'm interested, in glancing through your brief, that one of the cautions that you put forward is that there should not be an overformalization of a system that would provide supported decision-making and yet, as I look through the brief, including some of the obligations that you've outlined for the supported decision-maker, some of the barriers in terms of contractual relationships for the supported decision-maker -- mind you, I may not have hit it -- you didn't address the question of tort liability and so on. The issues that you raise in terms of consent to medical treatment, it seems to me we're going to require a very formal approach, as we've discovered through, by example, the Consent to Treatment Act, which is supposedly simply codifying existing common law and ends up presenting a very formalized approach. I'd like you to comment on that.
The second area that I'd like you to comment on is that it seems to me that what you're saying is that for people who are now classified as incapable or who would be classified as incapable under the Consent to Treatment Act what you're really asking for is a system of almost consultation that exists for the person who is now classified as capable. I assume then that means that you in fact want no assessment of capability, and I wonder then what your views of the work of the Weisstub report and training the assessors and so on is.
Mr Pike: To address your first comment on the overformalization, one of the things that we were extremely wary of when we were meeting over the past few months within our task force was the need to design legislation which would maximize and allow participation on behalf of people. We were faced with the problem that the laws, as they exist today, are barriers to participation; not only that, but the practice within our social service systems as well. We had to try and find a way of turning that around, almost of trying to flip things upside down, and that is going to require some modifications to existing law, things that we don't consider drastic, but modifications that will accommodate people.
There is going to be a need, we feel, to educate the public and people who will be involved in this process on what supported decision-making is all about and how it differs from substitute decision-making in order to allow people to participate and to recognize and validate decisions in an interdependent process, which really doesn't happen in any legal way right now. We are faced with the problem of having to build in some kind of mechanisms which would allow for that.
One of the things we did reject within our discussions was the need to register these support networks with a government authority. We felt that if we could build into legislation ways in which those people could be recognized as part of an interdependent process of decision-making around an individual, without registration, that would make the process less formal.
There are going to be some ground rules needed around all this because it's going to be new and challenging for people, and they're going to have to recognize that there will need to be obligations that people in positions of support will have to follow. There will be a need for checks and balances within the system to make sure that it is working for the benefit of the individual. We're not particularly concerned with that. We would be concerned if the process were so bogged down in legalese that it would be unworkable.
With respect to your second comment on the system of consultation, I guess all I can say on the purpose of this proposed model is that it's designed for participation, and it is designed around an individual, designed to maximize our ability, as people who support others, to listen to those people. I think if you look at the history of people with disabilities, many of whom have been considered to be incapable in the past -- in fact we're not incapable -- the problem was our problem, that we couldn't listen to people, we didn't have ways to communicate with people. That's what we're trying to do, build a model around people that will allow them to participate.
Mr Jim Wilson: Thank you for your presentation. I think this is the fourth time I've had the opportunity to hear an oral presentation of the new paradigm, better developed today than I've ever had it explained, and I like it. Every time I hear about it now, I get closer to understanding what you mean, and I think it really is the cutting edge.
Having said that, I have two brief comments. First, it's precisely our argument that ministers should be here to hear this type of innovative thinking. It's going to be extremely difficult for opposition members to be helpful because our mandate is rather closed in terms of addressing this particular legislation. My question there would be, how have you been received in the past? Have you had access to the government side to explain the new model? Second, would your preference be that we just take a break now in these proceedings and take time out to consider the new paradigm?
Ms Richler: If I could answer that, I appreciate your suggestion. We recognize that we did not have our position this well developed until this point and were not able to bring it forward earlier. I also mentioned that we have a new coalition that's just developed, more formalized. The coalition has expressed an interest, and I believe there has been some openness on the part of the minister's office to arrange an opportunity for us to present these ideas to her. We certainly would appreciate that opportunity.
Regarding your point about the cutting-edge nature of this, the fact that it hasn't all been well explored, we would be more than happy, as a coalition, to put these ideas out in a more public forum and to allow people an opportunity to look at where the holes are and to figure out together how we can plug them. Our interest is not in putting forward a model that won't work; we want to collaborate with people to develop a model that will work, but will work in the interests of people.
In terms of stopping the proceedings, in our recommendations we gave a number of options. Ultimately, we would like you to do whatever would be possible to seriously look at this as an option to the more traditional model that's before the committee. If that's not possible, we hope that at least there will be enough resources put into this that a pilot or a demonstration could be developed in the province so it could be looked at with the kind of seriousness it deserves and not simply dismissed and buried after whatever legislation is passed.
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Mr Winninger: I certainly appreciated the perspective that you put forward. I remember when we had discussions earlier in the year, I raised my concern about the fact that guardianship may be a necessary evil, that there are situations -- I gave the example of a person in a coma who doesn't have supportive friends or relatives there -- where most logical people would say, "Maybe that's an instance where a guardian should be appointed."
I would submit to you that our thrust is not to displace the vulnerable person from the centre of the paradigm, and I think some of the amendments we've introduced go a long way towards ensuring that the vulnerable person does remain at the centre. For example, section 47.1 lowers the threshold level for capacity for a person to name an attorney for personal care, that is, where the person has the ability to understand that the proposed attorney has a genuine concern for the person's welfare and appreciates that he or she may need an attorney for personal care. That certainly confers the kind of autonomy on the vulnerable person that I know most people in the room will want to see retained.
Also, I point to section 63, which itemizes the duties of guardians of the person and attorneys for personal care. As I go down that list, I'm struck by the fact that the vulnerable person does remain front and centre here, because the guardian has an onus to determine the wishes or instructions of the vulnerable person, to use reasonable diligence, to give more than lipservice to the wishes or instructions of the vulnerable person and also to consult with the supportive circle of family and friends to ensure that the actions taken by the guardian approximate as closely as possible the decision that the vulnerable person would make if he or she retained the capacity and competence to do so.
It may not be exactly what you envisage -- and time does not permit me to deal with some of the ramifications of what you envisage -- but I certainly suggest to you that the objective of this legislation is not to suppress the wishes and desires of the vulnerable person but to enhance them, either through the attorney for personal care, if that's possible, or to ensure that a guardian adheres to the wishes expressed by the vulnerable person or communicated through the family and friends.
Mr Pike: If I can just state a quick response to your comments, in relation to section 47.1, it's important to keep in mind that all the discussion around powers of attorney for personal care is still a substitute decision-making process, even though the threshold or test has been lowered in those circumstances to allow more people to enter into those arrangements.
What we're talking about is not the substitute process but a supportive process, and they are conceptually fundamentally different. I appreciate your comments around the legislation and how it tries to place an onus on guardians to consider the wishes of the individual and to consult with that person's close personal network, but what we're saying is that we don't need guardianship for that. Guardianship still is a process whereby somebody replaces the individual. The language is very clear: "decisions on behalf of." We're saying that decision-making is with and involving the person in terms of participation and determining his or her wishes with his or her personal support network. It's conceptually two different things we're talking about here.
Ms Richler: If I could just make one comment, I know Mr Malkowski attended at least part of Independence '92, which was an international conference on the autonomy of people with disabilities. I'm not sure if any other members of the committee participated in that conference. One of the things that struck me in meeting people from other countries and comparing the situation of citizens of Canada who happen to have a disability and people from other countries who happen to have a disability is that our Charter of Rights and Freedoms makes it very clear that people who have disabilities are citizens first.
My observation is that since the prohibition of discrimination on the basis of mental or physical disability took effect in 1985, there has been a gradual realignment of the perception by the Canadian public of persons who have a disability. There has been a gradual recognition of persons with disabilities as citizens: their right to vote, their entrenchment in the Constitution. Some of that presence in the charter has really enhanced the position.
Our concern is that by placing people under guardianship orders, no matter how well-meaning those guardians are supposed to be and no matter how considerate -- and probably most of them would be; we're not questioning their motives -- it totally changes the position of the person in society, and it will mostly affect people with mental handicaps. It takes away their rights, strips them off little by little, and they'll no longer have the same image in society to have a right to work, to have a right to live where they want, to have a right to marry, to have a right to do whatever it may be. Their whole image is going to be of someone who needs protection and is in a different class from the rest of society.
That's what we're trying to protect ourselves from: once again going back to two classes of citizens where you either have a mental handicap or you're labelled to be mentally handicapped, or you're not. That's fundamentally our concern.
The Chair: Ms Richler and Mr Pike, on behalf of this committee I'd like to thank you for taking the time out and giving us your presentation today.
If we could, we will now go back to the discussion on Mrs Sullivan's motion.
Mr Jim Wilson: Very briefly, as I mentioned in my remarks to the previous presenters, it's an excellent reason why ministers should be compelled to attend these committee hearings. I did want, in my very brief moment, to read the letter from Howard Hampton, the Attorney General, to you, Mr Chairman, because I find it particularly disturbing.
"Thank you for your letter of August 10, 1992, requesting my appearance before the committee for the purpose of clause-by-clause consideration of Bills 108 and 110.
"Due to prior commitments I cannot attend on any of the suggested dates. Moreover, it seems unlikely that I will be available to appear before the committee at any time during the month of September."
I think the letter speaks for itself. It's unacceptable. It's the epitome of arrogance. I look forward to hearing the government members' response to Mrs Sullivan's motion, which we will be supporting.
Mr Mark Morrow (Wentworth East): I've been sitting here reflecting on Mrs Sullivan's motion for the last couple of hours. When she first brought it up, I wasn't going to support it. She'll be happy to note that I've since changed my mind, as long as the motion respects the time allocations as set out by the three House leaders in the House and as long as the motion also respects ministers' times. What I mean by that is that I do believe the three ministers involved will make every effort they possibly can to appear before us, understanding that their times are very limited. I would hope the motion would respect that. Again, just to reiterate, I will be supporting Mrs Sullivan's motion.
The Chair: Further discussion? Seeing no further discussion, all those in favour of Mrs Sullivan's motion? Opposed? Carried.
This committee now stands recessed until 1:30 this afternoon.
The committee recessed at 1250.
AFTERNOON SITTING
The committee resumed at 1349.
CANADIAN DIABETES ASSOCIATION, ONTARIO DIVISION
The Chair: I'd like to call this meeting back to order. I'd like to call forward our first presenter, from the Canadian Diabetes Association, Ontario division. I apologize for the delay. We are running a little behind, so there are people taking extended lunches. Just as a reminder, you'll be allowed up to a half-hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 minutes to allow questions and comments from each of the caucuses. As soon as you're comfortable, could you please identify yourself for the record and then proceed.
Mr Peter Harvey: My name is Peter Harvey. I am the chairperson of the social issues committee of the Canadian Diabetes Association, Ontario division. I'm also a member of the national advocacy council, which is one of four councils of the Canadian Diabetes Association.
I would like to thank the committee for the opportunity of reappearing to speak to the proposed amendments. In our original submission, made on February 13, 1992, we gave a history of the CDA, an overview of the nature of the disease diabetes and suggested some changes that the organization would like to see made to the act.
The CDA has a different approach to this act, as we expressed in that original submission, and that is that we look at the various goals set out in the act and the methods of achieving those goals. It is these that we look at for the various powers that might assist people with diabetes. In particular, we look at the sections which deal with changing social attitudes, political attitudes, institutions and so on.
The CDA is dedicated to effecting change for the betterment of people with diabetes, but rather than rehash the particulars of our original submission, I've prepared a very short summary of the two or three areas where we think we, as an organization, might have problems with the proposed amendments. In addressing those, I would just like to flesh out where we see these problems and why they arise.
The first is with respect to the definition of "vulnerable person." This goes to the very core of the act, but there we see that in the words we are probably limiting the applicability of this act to people with diabetes. The words "moderate to severe," for example, cause a lot of concern for us because we don't believe there is such a thing as a "moderate to severe" case of diabetes.
An individual is a person with diabetes. They have type 1 or type 2. The ravages of the disease that follow diabetes can be very severe, but those are usually dealt with separately. Heart disease, blindness and so on affect people with diabetes. In fact, diabetes is the leading cause of blindness in people. Diabetes is one of the leading causes of heart disease. But it is people with diabetes we are dealing with as a homogenous group, not people with diabetes who also happen to have other problems. Therefore, we don't know how we can define how this act is going to affect people with moderate to severe cases or problems with diabetes, if that is going to be a linchpin.
The other problem is with the question of perception. If you were to ask a person with diabetes how he felt about his disease, whether he's discriminated against and so on, he'd probably tell you that he functions very well in society, but deep down we know there is systemic discrimination and we know there are problems. We know there are changes that must be made. For example, we know that going into the next century one of the biggest expenses this government is going to face is paying for health care costs for people with diabetes. The numbers are astounding. We put that in our original brief and I won't touch on it again.
We are suggesting that it might be helpful if the definition of "vulnerable person" were changed to incorporate the groups that are set out in subsection 15(1). In other words, if we found language such as, "Without limiting the generality of the foregoing, the definition of `vulnerable person' shall include people within those groups referred to in subsection 15(1)," we would then be definitely caught within this act and we'd be able to act within it. There would be no doubt or question. But without that, we fear that while we are going to participate at the committee level, that's as far as we will be able to go.
We want to use this act to effect change. We want to use this act to affect community standards. Without being included in the definition, we're not going to have access to the very goals that this act sets out to achieve.
The other problem we see is with respect to subsection 7(2). This is a strange subsection to us because it authorizes a community agency to act on behalf of the commission in performing functions, and the functions that are set out, again, go to the core of the Canadian Diabetes Association's position on advocacy, education, health care and so on. Without being able to act as an arm of the commission, we feel that we are going to be restricted in our activities.
Now, this is a very difficult way to put this together, but if you take the cumulative effect of subsections 7(2), (3) and (4), you'll see how it excludes an agency such as the CDA. First of all, a "community agency" is defined as being "a non-profit community or agency that is authorized under subsection 7(2)." If you don't come within a definition of subsection 7(2), you are not going to be a community agency within the act. A community agency within subsection 7(2) is one that does not provide services other than advocacy services.
The CDA prides itself on the fact that for years it has provided educational resources, health care resources, promotional resources for advising people as to the risks they are under. It sets standards in health care. It has set standards in devices and so on for the treatment of people with diabetes. It works within the health directorate of the Ontario Ministry of Health.
It is not within the purview of subsection 7(2). Accordingly, it cannot be a community agency. Accordingly, it can't get the funding, can't access the programs, can't provide the functions. We would dearly love to be able to access this act to be able to do the rest of the things set out in subsection 7(1), such as providing additional advocacy services for changes, to develop community strategies, to educate people as to the problems that are faced with diabetes.
Subsection 7(3) allows grants to be made to community agencies, but we can't be a community agency.
Subsection 7(4) says, "The commission may authorize a person who works for the commission or a community agency" to do work for the commission. Again, we are restricted. We can't use our people in those programs.
We feel that subsection 7(2) should be changed to allow agencies that provide services other than advocacy services to fall within the definition. To give you a very clear example of what might happen, we feel that we may end up going head to head with other organizations and depleting very valuable resources, just because we provide services other than advocacy.
For example, ARCH, the Advocacy Resource Centre for the Handicapped, does some litigation, some procedural work for the CDA in the discrimination field. We've tapped their resources in the past. We now have our own resources that we use. But ARCH, theoretically, within the definition of 7(2), can carry out the functions that are there, which the CDA is geared up and set to do and is now presently doing. In such a situation, we're going head to head and we'll have competing programs. We're not sure the direction is going to be the best that can be achieved. There are very limited resources and we want to make sure these resources are used in the best way possible.
The last issue I want to address is one that was addressed in our previous submissions. I just want to reiterate it, and that is, that this act is geared towards empowering vulnerable people on a community basis. The loftier goals, though, of changing the systemic type of discrimination that this is geared towards alleviating, in part, is not a community goal, is not a provincial goal, is not a national goal; it's a global goal.
We've had the Year of the Disabled and it's now time to recognize that yes, there are mandates out there for organizations such as the CDA that are effective in operating within the provincial sphere as a whole. Because the CDA runs, through its branches at the grass-roots level, on a community basis, it should not be precluded from running that on a provincial basis.
Accordingly, the concept of community should be the community of people who are vulnerable, not communities on a geographical basis. We urge you to reconsider and to allow the commission to empower or to give grants to other than community agencies within a geographical basis, but on the basis of a larger community that is acting for the community of vulnerable people within this province.
Those are the submissions I'd like to make on behalf of the CDA. I think I'm a bit short of the 15 minutes, but I'm not going to extend it out. I know you've had a hard day.
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Mr Jim Wilson: Thank you for your presentation. We do appreciate the brevity of it, given that the CDA did give us a comprehensive brief in the first round.
With respect to subsection 7(2), it seems to me that advocacy means different things to different people and in fact is a very broadly used, broadly defined term. Would not the CDA, with perhaps slight modification of the wording of its mandate, be considered a community agency as per this act?
Mr Harvey: I don't believe so. If advocacy, in the meaning of the act, is to act on behalf of another person, to speak when the person cannot speak or formulate the ideas in a better fashion, in a comprehensive way, then that would necessarily have to exclude the setting of standards, for example, for blood glucose monitors.
Where we would interact with the Canadian Standards Association, for example, it would preclude us from probably dealing with some of the other issues of allocating research funds. That's one of our big goals: to make sure there isn't a lot of cross-duplication in the allocation of these funds. The CDA is very strong in that area, and traditionally it has been looked at as a research organization that funnels the funds into the proper hands. It's only recently that it's taken on this advocacy role, so I don't think it would be.
Mr Jim Wilson: Perhaps, Mr Chairman, I could ask a question through you to the parliamentary assistant. Was it the intention of the government to exclude the CDA from being contracted by the commission or receiving grants from the commission?
Mr Malkowski: I'd like to clarify. Our approach to this, of course, is to enable vulnerable people who have difficulty expressing themselves to have their expressed wishes known. That is the intent of the legislation, so I plan to ask questions, if I may, if I can get to that.
Mr Winninger: Mr Chair, could I add something as well in response to that? I'm just going by memory here, but if my memory serves me correctly there was some concern expressed that the same agencies providing services would be in conflict if they were also advocating. That's why the definition was narrowed.
Mr Jim Wilson: But would the type of advocacy the witness has described that the CDA does on behalf of its members not be considered, for example, systemic advocacy, when you're working with the CSA to help make regulations regarding standards, for instance?
Mr Winninger: It's an interesting issue. I was just recapitulating what my understanding was of that section and why it came to be.
Mr Jim Wilson: I think it's a point that we need to clarify, Mr Chairman. Perhaps the government could come back to us with a written response to my question.
The Chair: Okay. Anything further? Thank you, Mr Wilson. Mr Malkowski.
Mr Malkowski: Thank you for your good presentation.
Is there a consumer group affiliated with your organization? You also mentioned you have an affiliation with the Advocacy Resource Centre for the Handicapped, or have you used their resources? Could you talk a little bit more about that?
Mr Harvey: No, we have not what I would define as a consumer group as such. The structure of the CDA is basically a grass-roots organization that starts at the branch level that is then organized into a regional organization that then goes up into the Ontario division, reporting to the CDA national.
Each one of the branches is autonomous to a certain degree, and through them many branches run stores that will sell devices, insulin, syringes and so on to make sure that everybody has access to them at the least possible cost.
We have a provincial organization that provides an advocacy function. This function is often farmed out to private solicitors or to ARCH or other organizations that can assist us. We also have a national advocacy council that deals with issues on a national level. For example: discrimination, recently, in the armed forces is one issue, motor vehicle licensing, pilot licensing and so on. We don't have a true consumer group as such. It is a volunteer organization, primarily. We have no paid advocates.
Mr Malkowski: I will follow up the concern on the definition of a vulnerable person. If you're talking about terms, you were saying that doesn't include you, but we are trying to focus on moderate to severe disabilities. People have extreme problems expressing themselves. You're not satisfied with that term. Could you talk a little more about that?
Mr Harvey: That causes some concern, the first go-around, the definitional aspect. It's because of the use of the language in 15(1) that we feel we do have access to this act and the provisions of it.
"Moderate to severe" is a difficult issue, because a person who is in a hyperglycaemic reaction or a hypoglycaemic reaction, the opposite end of the scale, is certainly not able to speak for himself. That would be in the "very severe" range in anybody's definition, because in those circumstances the individual is usually incoherent or could be unconscious at the end of the scale.
We feel the act is well set up to protect the interests of those individuals. It is in the other areas dealing with the provision of what is referred to in 7(2), the functions, that it causes some concern. As vulnerable persons we are able to make sure that we can access the wider parameters of this act to carry out the goals dealing with systemic discrimination.
Mr Malkowski: I appreciate your concerns and certainly I'll raise your concerns.
Mrs Sullivan: These concerns which have been expressed by the diabetes association have also been placed before the committee by other organizations that are supportive in health care fields. By example, I think of the Arthritis Society, multiple sclerosis, heart and stroke.
Church groups have also indicated to me that they have some extreme difficulties in that they are providing advocacy services along with many other functions, including some of them providing or assisting in sponsorship of low-cost housing, for example, so that when other services or functions are being done by those associations, they are eliminated from the link with the Advocacy Commission and cannot become an agent of the Advocacy Commission, if you like.
I think that while we do understand and while we have heard from certain groups that there is concern about a conflict of interest between the service provider and the advocate, we see many organizations across Ontario which are doing double duty as both systemic advocates and individual advocates and are providing individual advocacy and are also providing other services which are needed, where they may be the only deliverers of those services. We raise the issue not only because of the double duty but because of the difficulty in providing services on an equitable basis in every part of the province.
The government has not responded in any way other than to accept the argument that every service provider cannot be an advocate. We just feel that this is an inappropriate response and we're hoping that the Minister of Citizenship will respond to that. We believe there is an opportunity for a change of wording that would allow the health care organization and other groups that are providing services to participate.
We're waiting for change, but the minister, of course, doesn't come to the committee so she might not be hearing what's on our minds.
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Mr Harvey: I may respond to that by giving you a very positive example. We have been intimately involved with the Ministry of Transportation for the last three or four years to effect a change to allow people with diabetes to acquire other than a basic driver's licence.
On the advocacy level, the individuals being represented by a counsel who has, on occasion, been retained by the CDA and on occasion been retained by individuals, those were individual victories. It was not until the CDA was able to launch a concerted attack at the national conference dealing with motor vehicle registrars and licensing that we were able to effect a positive change.
That is one of the functions we would look at and say, "That is where the CDA should be working and exerting its weight and so on." We could change the individual's position by obtaining, on an individual basis, occasionally, a licence, but we couldn't change the discrimination that was built into the policy without going at it on a national level and then dealing with it on the provincial level. That's why we say that section 7(2) is very important to us. Those functions are extremely important.
Mr Stephen Owens (Scarborough Centre): I have a question either for the ministry staff or the parliamentary assistant for the Ministry of Citizenship. In terms of the concerns by the diabetes association, is it the view of the ministry that a diabetic would be precluded from the use of an advocate?
Ms Valentine: Not at all, and I apologize; I didn't hear the earlier discussion. As a matter of fact, diabetes is listed within one of the categories, in category 2 of subsection 15(1). Diabetes is specifically listed there. As I say, without hearing your earlier discussion, I can't clarify any further than that.
Ms Akande: I don't want to belabour a point, so my question will be brief. I'm interested in your desire to be included within the group that could provide advocacy services as well as providing other services.
There actually are two schools of thought around this -- several, I should say. One is that adult protective service workers for one group have, for a long time, felt and said that they seemed at times to be in conflict with the very groups they were working for, the very agencies they were working for, when their ideas, views and recommendations about individuals differed from the agency's desire or views. Could you comment on that for me, please?
Mr Harvey: I can, because quite often we have to recognize that the rights of the individual or the desires of individuals often conflict with the betterment of the community as a whole. Again, if I can go back to my motor vehicle licensing problem, an individual feels he should have a licence to drive a bus, even though he is a person with diabetes. That may not necessarily be in the best interests of the CDA, because that individual may not have the responsibility or the ability to look after his disease and care for himself properly. He may be subject to hypoglycaemic reactions without knowing he's going to suffer them, yet the demand is, "I should have a motor vehicle licence to drive that bus."
The CDA itself lobbied for and wanted a change so that he would have the right to present his case to the motor vehicle registrar or licensing branch and let them determine, on known medical standards, what it is that he would have to do to obtain that licence.
Ms Akande: And the member of your agency who would be advocating on this person's behalf? His or her stance would be what?
Mr Harvey: We would probably not look after the individual. We would seek outside counsel for them.
Ms Akande: So in fact you're providing a different level of advocacy.
Mr Harvey: That's right.
Ms Akande: One that we expect all agencies will continue to provide: an informal level.
Mr Harvey: Yes. It is a formal level, though, because, for example, the motor vehicle licensing recognize the CMA's and the Ontario Medical Association's role in setting the medical standards. But again, those standards are set in conjunction with the CDA, so we are there on a formal basis at the same time. But we are performing the functions that are set out in section 7, other than the pure individual advocacy function. It's those ones that we are really keen about.
The Chair: Thank you, Ms Akande. One brief question, Mr Winninger.
Mr Winninger: I'd like to thank you for coming here today from London. A lot of people don't realize the connection between the discoverer of insulin and London and Banting.
Ms Akande: They do now.
Mr Jim Wilson: He's from my riding.
Mr Winninger: It's significant that you have your head office on the edge of my riding. Depending on what side of the street it's on, it could be in it or might not be in it.
In any event, the question I want to put to you is in regard to your first recommendation, which would ask that section 2, the definition of "vulnerable person," be amended to incorporate, by reference, subsection 15(1). As I look at these sections in the reprinted text of the act, section 1 refers to individual persons and section 15 refers to organizations, so I just wondered where you were headed.
Mr Harvey: It would really have to be language-crafted to incorporate, by reference, individuals within the groups set out in subsection 15(1). It would then come back to the individual, but it would incorporate, by reference, the group of individuals with diabetes and so on.
Mr Winninger: But, for example, people with a mild form of age-related diabetes that they control through their diet wouldn't constitute vulnerable people. Many people might ask, "Why are you allocating resources to people at the very mild range of diabetes who aren't vulnerable?"
Mr Harvey: I understand that. The issue there is, when does that person become a "vulnerable person" in terms of the definitional aspect? Do they have to suffer from hypoglycaemic reactions consistently? Do they have to become blind? Do they have to have heart disease? It's such a narrow dividing line that if we're doing it to allow the CDA access to the other provisions in the act with respect to the functions where it can deal with the community of people with diabetes, the class, then we're going to deal with everyone and bring everyone within the same rhetoric.
For persons who suffer a lack of respect in the community because they have diabetes, whether they have a severe case of diabetes doesn't really matter. It's the fact that there's a stigma attached to the disease. I think that's the same with many diseases that come within that category. There's been a body of systemic discrimination that is only now being dealt with. Policies have to change and so on. For example, again in the health care field, in the year 2000, how much of the resources are going to be allocated to the treatment of people with diabetes? That's going to be a very critical area that is going to require a lot of work, concern, lobbying and so on. Our view is that the more you do upfront, the less you have to do in terms of long-care treatment.
The Chair: Mr Harvey, on behalf of this committee I'd like to thank you for taking the time out this afternoon and giving us your presentation.
Mr Harvey: Thank you again for inviting us.
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ADVOCATES' SOCIETY
The Chair: I'd like to call forward our next presenter, from the Advocates' Society. Good afternoon. Just a reminder that you'll be allowed up to a half-hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you're comfortable, could you please identify yourself for the record and then proceed.
Ms Eleanore Cronk: Thank you very much, Mr Chairman and members of the committee. We're pleased to be here before you again. I'm Eleanore Cronk, president of the Advocates' Society. With me are Mr Ray Colautti, a director of the Advocates' Society who will be speaking to you today, and our executive director, Mr Duncan Read. We're grateful to the committee for the opportunity to address you again. We have read with considerable interest and study the proposed amendments to the collection of bills, in particular Bill 74. Our submissions to you today are going to be restricted to our further comment on matters that we raised with you when we were here before and how the proposed amendments respond or react to those.
We will be delivering our written submissions to you, which will be far more detailed, but we deferred that when we knew that the amendments were on board and in place. So I'd ask you now to hear from Mr Colautti, if you would.
Mr Raymond Colautti: Thank you. Mr Chairman, members of the committee, when we appeared before this committee on March 13, 1992, we expressed three basic concerns of the Advocates' Society on three essential elements contained in the proposed legislation as drafted. The Advocates' Society is an association of lawyers throughout Ontario who practise as legal advocates in the resolution of disputes involving courts, administrative tribunals and governmental bodies, arbitrations and other forums. As such, many of our members have had experience dealing with vulnerable persons as they are described in this, the proposed series of legislation before this committee.
When we were here in March, the first concern we had was that the function of advocates is largely defined under Bills 108 and 109 and that the provisions of those acts empower and require the advocate to give advice to vulnerable persons concerning very fundamental rights of self-determination over themselves and their property. It is these people who are really in the greatest need of high-quality advice in so far as their legal rights and duties and responsibilities are concerned.
Our society was concerned that the legislation, as it was initially drafted, did not give enough guidance on the qualifications and training to be given to the advocates appointed under the act, or that it did not establish a code of professional conduct or a written complaints procedure where persons who are adversely affected by the actions of advocates wish to lodge a complaint.
There has been some addressing of those concerns in the acts as revised, but they do not go as far as our society would like to see them go, and we have some submissions we would like to make on that.
The second concern that we had expressed last March was very serious concern over the rights of entry conferred on advocates under Bill 74, particularly in respect of situations where private dwellings were concerned. We had felt and expressed to this committee that the provisions related to entry were overly broad and infringed upon deeply held values related to the sanctity of the home and the right to privacy free from interference except in clearly defined circumstances. We had expressed a view that what in effect would be a forced entry for the purposes of access to a vulnerable person should only be sanctioned pursuant to a prior order given by a tribunal of competent jurisdiction. I have some submissions we wish to make on that point and some very specific concerns over the present wording of sections 18 and 19 of the act.
The third concern we had expressed was that we saw a potential for confusion created by the use of the term "advocate" for what is essentially social advocacy. An advocate's function, as defined under this legislation, really is giving more than legal advice, and there are many, many other manifestations of what they do. But we had expressed the submission that the use of the term "advocate," as it was explained in detail in some of the reports leading up to this legislation, has a legal connotation to it and could create confusion in the minds of the public.
Let me turn to the revisions of the act and how on those concerns that we expressed, we still have some further submissions to make and suggestions on how our concerns can be met by further fine-tuning of the legislation, if it is deemed advisable.
First of all, our concern over issue one -- the powers, duties and responsibilities of advocacy and what I will call the accountability issue -- has been dealt with somewhat under clause 7(1)(k) of the revised act. It does empower and direct the commission to establish minimum qualifications and standards and a code of conduct for advocates, but there are, so far as we are aware, no draft standards or code of conduct yet in place against which comment can be made as to adequacy or inadequacy. It is our society's submission that these standards should be in place before the act comes into force, and certainly before advocates actually start to be appointed under the act by the commission and start their function.
As an example, in a report dealing with the licensing of paralegals made to this government by Professor Ron Ianni of the University of Windsor, he proposed a very detailed and far-ranging licensing scheme that took into account training, educational standards, codes of conduct and so forth that should be applicable to paralegals. Paralegals really function in a quasi-legal sphere. They provide advice and legal services on a relatively low level, and it has been seen to be necessary to provide for qualifications, training, experience and code of conduct in a very detailed way in a report that was prepared after public hearings for paralegals.
As I opened my remarks to this committee, the people to whom the Advocacy Act is aimed in providing advocacy services are in probably the greatest need of high-quality legal advice in many circumstances. It is essential that the accountability issue be clearly addressed in a code of conduct and in a complaints procedure that is in existence before advocates become appointed. We see it as being absolutely essential that these standards be in place prior to the coming into force of the act in so far as the appointment of advocates is concerned.
For this reason, we suggest that in section 10 of the act, the legislation provide for an advisory committee consisting of legal practitioners to assist in establishing these standards and providing advice to the commission.
We also suggest, related to this concern, that there be a structure enacted for providing legal advice to advocates so that they can discharge their duties effectively. We are not saying that all advocates must necessarily be lawyers or have formalized legal training; only that it is essential to have access to high-quality legal advice to enable them to discharge their duties effectively.
As an example, there is a body of expertise that has certainly been built up by the official guardian's office. They often act for persons who will be considered to be vulnerable persons under the proposed legislation. They have significant expertise in providing legal services to vulnerable persons. As we see it at this point in time, it would be desirable to have an interlocking of the function of the official guardian perhaps with the Advocacy Commission to provide that kind of advice that our society feels is absolutely necessary.
We also suggest that before a code of conduct and minimum standards of qualifications are propounded, there be a study or at least some sort of public hearing for input into what those detailed provisions would be, input as to content.
Related to our concerns over the accountability of advocates, we have some concerns over the phrasing of section 9 of the act. Section 9 of the act provides an immunity from lawsuits for advocates. As it presently reads, it provides for immunity from lawsuits against the commission or an advocate or other person who works for the commission or a community agency. That proposes a situation that even though perhaps an advocate performing his or her functions under the act is grossly negligent in the discharge of duties, the wording of section 9 as it presently stands does not provide for redress unless the actions of the advocate are motivated by bad faith. We pose the question as to why someone who has perhaps suffered serious damage through gross neglect or default of the advocate should not have recourse and a right to action.
We can understand perhaps the necessity of providing immunity to lawsuits to the commission that in many circumstances is acting much as a tribunal does, but to the advocates who are functioning there ought to be some greater accountability than is presently provided under section 9, and the minimum standard ought to be at least gross negligence.
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Turning to the second issue that we had previously expressed and still maintain, we have some serious concerns over the right of access under sections 18 and 19 of the act. We have a fundamental problem with the warrant procedures as they are laid out in the act, even as revised. The fundamental question that should be asked is whether it is appropriate and advisable to have the warrant procedure going to the forum of the justice of the peace.
Wouldn't it be better, we submit, to have a specialized tribunal deal with these warrant issues where there's a question of access and the right of access, particularly in respect to private dwellings? In terms of an advocate requiring that access, wouldn't it be better to have a specialized tribunal deal with those questions as to issuing warrants?
A specialized tribunal has the ability to build up a body of expertise and precedent to guide it in situations where warrants are required. There is under the Consent to Treatment Act a proposal to set up a tribunal known as the Consent and Capacity Review Board. That would be an appropriate tribunal to discharge the function with relation to issuing warrants; much more so, in our view, than simply giving that function to a justice of the peace.
Dealing again with the right of issue, we have some very specific concerns with the present wording of sections 18 and 19 of the act, particularly with respect to access to private dwellings. Section 19 really deals, putting it in the vernacular, with access to private dwellings. Our society cannot support the right of entry without a warrant unless there are reasonable and probable grounds of imminent harm or mischief that might occur if access is not granted.
The way the act is phrased in section 18, an advocate is entitled to access without warrant if he or she has reasonable grounds. What we are proposing is that the words "reasonable and probable grounds" be added. That is a test that is well defined in law, has a great deal of precedent behind it as to what the meaning of the term is and provides a level of entry into private premises that is at least equivalent to what the police presently have. One might pose the question, in lessening the test to simple reasonable grounds rather than reasonable and probable, of why you are giving an advocate a means of entering a private dwelling that is greater than the powers enjoyed by the police at the present time.
Likewise, in section 19, in obtaining a warrant, whether the tribunal is determined to be a justice of the peace or a specialized tribunal at a future date, the test for obtaining the warrant should be that there should be evidence produced to a justice of the peace or the tribunal on reasonable and probable grounds to show that the conditions contained in clauses 19(1)(a) and (b) are existent.
The test for obtaining the warrant should be that there should be evidence produced to a justice of the peace or the tribunal on reasonable and probable grounds to show that the conditions contained in clauses 19(1)(a) and (b) are existent. That reasonable and probable grounds test is what the police must satisfy a justice of the peace about prior to obtaining a search warrant. Again we pose the question, why should the test be any less for an advocate?
With the same rationale, we also suggest that in section 17, even with respect to perhaps a facility or a controlled-access residence, the "reasonable grounds" that are expressed in subsection 17(1) should also be "reasonable and probable grounds" for entering. Those changes would bring this proposed law in line with a very well known and widely accepted test for intrusion into what would otherwise be private premises.
Dealing with the third issue, that is, the use of the term "advocate," in the O'Sullivan report, which is one of the reports leading up to Bill 74, the author looks at the definition of "advocate" and quotes from the Concise Oxford Dictionary. It is well known that the noun "advocate" is one "who pleads for another"; who "speaks in favour"; "a professional pleader in a court of justice"; "a barrister." At page 40 of the report, Mr O'Sullivan says:
"As suggested by this dictionary definition, the most well known and best understood type of advocacy is legal advocacy, where a lawyer is retained by a client to plead a legal case on his or her behalf before an administrative tribunal or court of law."
We're concerned that the use of the term "advocate" carries with it a legal connotation that will cause confusion in the minds of the public, but in particular in the minds of perhaps vulnerable persons who may not be in a position to make very discerning distinctions on phrasing niceties.
We would request that this committee study whether other terminology can be used to describe what this advocate does, such terminology as "social advocate," or as is used in the Consent to Treatment Act, "rights adviser." The use of the term "advocate" has a danger of creating confusion in the minds of the public that we're very concerned about.
I thank you for your patience in reviewing our submission once again. We will submit a very detailed brief which will go into much more depth, but those are the three areas of concern we still have with the proposed legislation.
The Vice-Chair: Thank you very much. Any comments or questions?
Mr Robert V. Callahan (Brampton South): Mr Chairman, I am not a member of this committee, but I did speak to one of the members of the Advocates' Society and I think they're probably well positioned to perhaps answer a question that is not addressed. I put it on the record for purposes of this committee. It deals specifically with schizophrenics.
Under the amendments that were made to the Mental Health Act, a schizophrenic literally was allowed to refuse to take medication. I want them to validate that if a person did not take medication, was out of control and was charged with a criminal offence, something perhaps as mundane as being naked in a public place or committing some act that people didn't quite like in a public place, if he or she were to plead not guilty to that charge and then get on the stand to give evidence that perhaps the television set told him or her to do it, the crown attorney would immediately move to have the matter dealt with under section 16 of the Criminal Code as an application to have the person declared insane, which could well mean the person either pleads guilty to the charge and perhaps receives a discharge or a fine, or in the alternative, on an application under section 16, could wind up in Penetanguishene for an indefinite period of time at the pleasure of the Lieutenant Governor.
I'd just like you to confirm whether that in fact is the case. I remember when the amendments were passed to the act, everybody had this grave concern about forcing treatment on people. I can remember being on that committee and watching the mothers of schizophrenics, who sat in the front of the audience, not being able to have a word edgewise about how their loved ones were being left out on the street to jump off bridges or to perhaps cause more significant mischief by killing people or what have you.
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I've looked at this act. I've also looked very quickly at the brief from the Friends of Schizophrenics, and it does seem to address that in totality. It's like telling a person who's got diabetes: "You don't have to use your insulin any more if you don't want to. Just continue to have diabetes." Here there is medication and they can be treated.
I guess the question is -- and perhaps you people would be good enough to either address it now or to address it from that aspect in a brief that might be sent in to the committee for the benefit of the committee when it deals with this bill in the House -- is that in fact your experience? Perhaps I should ask the gentleman I was discussing it with beforehand.
Ms Cronk: I was going to say that, as a wise president, I'm going to defer that to the lawyer to my left.
The Vice-Chair: Just before you answer that, the parliamentary assistant would like to clarify that just for a second.
Mr Malkowski: I would like to clarify which bill it is that your question is concerning. Is it the Mental Health Act that you're actually speaking about or one of the bills in this committee?
Mr Callahan: It deals with Bill 108. I suppose it deals in a sense with Bill 108 specifically but perhaps with the other bills in a similar fashion too, as to whether or not these bills will have the impact of eliminating the tragic mistake we made in amending the Mental Health Act, at least in terms of schizophrenics, their families and loved ones, and how these people could be dealt with.
I can tell you quite frankly, from my own experience, the courts are fed up with these people being brought before them. I've had at least five or six judges say: "This is not a legal matter; this is a health matter. For God's sake, get your act together, Legislature, and do something about it."
Mr Colautti: You've asked a question, as I understand it, as to whether the scenario that you propose can happen. It's been my experience that, yes, it can and certainly does happen. What in essence happens is that the person ends up being detained actually for far longer in many circumstances than he would have been had he had the capacity to deal with this problem right at the start.
We would like the occasion to deal with that in our written brief, but a quick answer to your question is that it's been my experience that, yes, it can happen and does happen and that there is a real process problem concerning schizophrenics in this area that you proposed.
Mr Callahan: If you do that in written form, I'd like you to address the provision in here whereby even if a person gives a power of attorney for someone to look after their personal needs, the threshold for eliminating that power of attorney is much weaker than the one of getting it. He can literally discharge this person even though he may be on the fringe of going into a schizophrenic condition, a psychotic state.
Just for the record, I want the committee members to understand that we just recently read about a very tragic event. I can tell you of events that I'm sure we've all experienced, and certainly I've experienced them significantly, where people who had not taken their medication were in fact threatening their family with all sorts of problems, including knives and weapons. The police are called. The police don't know what to do with them. There's not enough room in the hospitals if there happen to be cases a little more significant than theirs to put them in the hospital.
What happens is society as a whole -- and I condemn the press as well. They only seem to write about it when somebody gets stabbed to death at night in his bed or jumps off the Gardiner Expressway. I put that on the record because I feel very strongly about it, that it's not an issue that's being addressed properly, even by these bills, and they require a significant amount of reworking to ensure that these people have that protection.
I think you'll also confirm that under our present -- and I sound terrible saying this as a Liberal -- Charter of Rights and Freedoms, in all its wisdom, a judge is prevented from even putting a term in the probation order that the schizophrenic take his medication, because it's been deemed to be contrary to the charter.
Ms Cronk: If I may, we will take a look at the issue and give you the best commentary that we can in our written submissions. What you've raised is obviously very fact specific; it's also very difficult. But we share your concern that there's a process problem and there's an exercise-of-rights problem in the hypothetical that you posed in the first instance.
What I did want, Mr Chairman, if I could, is to take one minute to supplement by way of comment on Mr Colautti's comments about our concerns about the warrantless-entry situation, so that this committee is very clear at least as to one perspective on the issue.
It's our view -- and I think you know from the comments that we made to you when we appeared here before -- that this legislation is long overdue and is a very laudable effort to help in a very much needed social situation. But there is, with respect to rights of entry, a balancing exercise that must be gone through. This act affords, for the very first time, extraordinary rights of warrantless entry to private dwellings.
Our submission to you in essence on that is that where there's a situation where there's imminent risk to the health or safety of a vulnerable person, then that's an exceptional right that society would not only accept but, in our view, would regard as laudatory. But where that test can't be met, where there isn't an imminent risk or safety issue, then it seems to us you shouldn't be granting to advocates or the persons filling that function -- whatever in the end you choose to call them -- rights that are even more extraordinary than those our police enjoy today.
What we're suggesting to you is that you revisit the circumstances in which someone can go in without a warrant where there is no imminent risk. We're suggesting that the test should be a well-recognized legal one, reasonable and probable grounds, and that this minimum threshold should be satisfied before warrantless entry to a private dwelling or to a facility should be permitted.
The people who addressed you in the previous submission from the Canadian Diabetes Association raised an issue that we're concerned about as well, and there were several comments from committee members. Very quickly, if I could comment on it, it's the issue of potential conflicts arising between the substitute decision-makers under this legislation, the persons filling the advocacy or advisory role, and the care provider.
Mr Colautti suggested you might give some consideration to the creation of a tribunal, which over time would build up the expertise and precedent necessary to deal quickly and on an emergency basis with some of the problems that are going to arise out of this legislation. The resolution of those kinds of conflicts is one of them.
Among the three of us here today, one of us is a lawyer who spends a great deal of time litigating and advising health care professionals in the disciplinary and non-disciplinary context. I can tell you that those kinds of conflicts arise on a daily basis, and there's going to have to be some independent arbiter that you can reach quickly to decide those kinds of conflicts. They're encountered every day by the trustees already in place to deal with those issues.
What we're proposing to you is that this is a model that can work. There are precedents out there, especially in the situation where children's rights are concerned, where it's already working, and that same body could deal with the issuance of warrants.
I want to underscore that we share the view that there is the certainty of conflicts arising among these various people involved in the process, and a tribunal could resolve those issues and could also deal with the issue of warrants. I've taken additional time, Mr Chairman. I thought perhaps I should at least try to do that.
Mr Jim Wilson: Thank you for your presentation. I was curious to know whether the term "advocate" appears in any other legislation that you're aware of, for instance, the Barristers Act. I'm not sure what we call it.
Mr Colautti: No, it doesn't. The Law Society Act speaks of barristers and solicitors, but, no, the term "advocate" is not used.
Mr Jim Wilson: None the less, your contention is that there may be confusion among the public. I don't really see that, although I recognize the legal profession obviously does advocacy and legal advocacy. We don't often refer to a lawyer as an advocate except in French.
Ms Cronk: Those who litigate do, if I may respond in that way.
Mr Jim Wilson: Is that right?
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Ms Cronk: It's a particular kind of lawyer. Our concern is this scenario: If you have a hypothetical where an entry has been made by this person, whether he's called an advocate or an adviser, in particular in a private dwelling, to see a vulnerable person, then unless there's explanation, if the name "advocate" is used, it can carry for those who are least able to question the implications of the language, the implications of the name, the implication that it's someone trained to give them advice on legal matters. They don't think of these things always as legal matters, but these bills afford the right, for the first time, to decide issues related to personal property, personal health care, personal circumstances. As you of course know better than I, that's a new element to outside, third-party advice. We're concerned that those who receive the advice will not differentiate between whether it's someone advising on substantive legal rights or advising in a different capacity. That's the first level of potential confusion.
The second is with the public at large, not just the vulnerable-person category. Really, what we see this act envisaging is people providing advice on basic rights and carrying forward the expression of the views of the vulnerable person. There are many ways to describe that without using the word "advocate."
We asked you before to consider using a descriptive, to call it a social advocate, something that would distinguish between a term that to many people in the community means a particular kind of lawyer. It's a barrister. That hasn't found favour with your committee. We're suggesting another solution. Call them advisers. Make it clear that they're advising on rights, that that's what they're doing, so that the person who is the recipient, the beneficiary of that role, isn't invited to conclude something else.
I can give you all kinds of examples, but the elderly person who is visited, either in a facility as defined or a private home, by one of these individuals, depending on what he or she did in his or her active life outside the home before coming to that, may have a very different word association with that name. All we're saying to you is that it does have a popular usage which refers to a very particular kind of lawyer, someone skilled in the law. It's a barrister. It's a trial lawyer. There are a lot of people who know the word in that context.
Our first position to you was adopt a descriptive: Call it a social advocate, call it a human advocate, something that distinguishes. If that doesn't find favour with you, call it an adviser. We're saying to you that legally there's some precedent to do it and that's the function we see them performing.
Mr Jim Wilson: I was a court clerk for a while and I should know these things, so I'm pleased you provided that explanation -- obviously lower courts.
Ms Cronk: Or a long time ago.
Mr Owens: Just in terms of your comments with respect to the tribunal, I appreciate your suggestions and we'll certainly take a look at that. I think you're correct that at some point there will be some need for conflict resolution and it's clearly in the patient's, the client's, the individual's best interests to have that conflict resolved as quickly as possible.
I have another question around your comments with respect to, I guess, the discipline of the advocate, for the lack of a better word. Is it in your view that the duties of care, for the lack of a better word, that are imposed on the advocate are a high enough test on the advocate to ensure that he or she performs his or her functions to the best of his or her ability? In terms of the process that you see happening, if in fact that does not happen, do you see it like a College of Physicians and Surgeons of Ontario model or a bencher model? How do you view the process taking place?
Ms Cronk: If I could respond to that, Mr Owens, again I said to you that one of the people who appears before you, as a matter of legal practice, spends a considerable amount of time doing disciplinary work for the physicians, nurses and police, as it happens. The model we had in mind when we suggested that, as you will certainly know, in most regulated professions, including the health professions, it is in the regulations that you find a definition of "professional misconduct" or "incompetence."
What we are concerned about with this legislation, as currently drafted, is that there's no clear description of what the duties of advocates are or a code of conduct they will be obliged to follow or, conversely, what might constitute misconduct.
We recognize that under the amendments it's suggested that's going to be covered by regulations. What we're suggesting to you is that you should have public consultation and public opportunity for comment, in the same way you have it here in the bill, about those regulations as soon as you can and before this bill gets implemented.
The reason for that, as you will of course know and the other committee members will know, is that the heart of that role is now going to be defined by regulation. I can't tell you whether we think there's a functional problem or a conflicts problem without seeing how that role is going to be described. Professional misconduct is going to be very difficult to define for this kind of person but you can define what's permissible and, to use your language, the minimum standard of care they're to employ.
That is not in this bill. It's been improved. There's a section there now, for example, that says the advocate can't do anything inconsistent with the expressed wishes of the vulnerable person. That's a threshold that's been established, but there's no clear articulation of what their function is, what their code of conduct is and what the rights of those who are adversely affected by them are going to be.
That's why in his submission Mr Colautti was urging you to get the draft regulations on the table now and to invite consultation from members of the public and interested groups. We see the regulation now as being key in the way it has been approached and we're urging you to use the model that has been used in other circumstances for health professionals and other people who are given extraordinary power, like the police, to deal with it in a very specific way, and it's not at the moment.
That's why we have the concern about the immunity section. It's usual, as you know, to put an immunity from law suits for damages in a statute for tribunal members. We're not objecting to that. What we're saying is you have a very broad immunity grant in here for people who are being given authority that at the moment even the police don't have. If you do that, you have to have your checks and balances in place. As we read this, you're saying that's going to be in the regulations and we don't know what's in them.
The Chair: You have one minute, Mr White.
Mr Drummond White (Durham Centre): Following the earlier line of questioning, Ms Cronk, you were discussing the issues with other health professions or social professions. The profession that most likely would be employed as social advocates here would probably be the social work profession, yet there is no law or social work act at the moment. The only way in which those codes of conduct would be defined would be in regulations. That wouldn't be as potent as having an act which defines the code of conduct for that profession, would it?
Ms Cronk: There's always a level of potency that's greater by having it defined in the statute than the regulation. It is possible, however, under the current bill that persons other than those with social work qualifications and training will function as advocates.
If you're going to create a category of people who have the kind of legal entry rights that you've given under this bill, what we're saying is make sure that under this bill you define it as well, and earlier rather than later. But, yes, you're right, there are other places to do it, but then you'd have to do it by cross-reference to another piece of legislation and you may have people who are not social workers exercising this function.
If you're going to permit that, if you're going to have a broader category of people who are eligible to function as advocates, make sure the code of conduct under their own operative statute is in place.
The Chair: Ms Cronk, Mr Colautti and Mr Read, on behalf of this committee I'd like to thank you for taking the time out this afternoon and coming to give us your presentation.
Ms Cronk: Thank you again.
The Chair: I'd like to call forward our next presenter from the Ministry of Community and Social Services. Good afternoon. Just a reminder that you'll be allowed a half-hour for your presentation. Do you have a statement?
Ms Nicole Lafrenière-Davis: No, we don't. We were asked to come to respond to some questions of the committee.
The Chair: Okay, we'll go straight to questions.
Mrs Sullivan: First, I want you to know that we appreciate you coming, and particularly at such short notice, to the committee. As you know, we have been dealing with four bills with respect to consent to treatment, substitute decisions and advocacy. In the course of the hearings on the amendments to those bills, we've had a number of interventions before the committee from children's aid societies and from other providers of services to youth, particularly youth with disabilities which are either mental or behavioural.
The concerns that they have raised with us are that the provisions of Bill 109, even with the Bill 110 proposed amendments to the Child and Family Services Act, will in fact interfere with the responsibilities and mandate under the CFSA in providing the services that they are statutorily required to provide.
We are concerned about that because we value the work of those agencies and believe it's important in Ontario and are eager as a committee to fashion amendments which may be necessary to any one of the four bills that will ensure that their responsibilities under the CFSA are able to continue. We are at a loss to know how to do that; in fact, there is some question as to whether some of the unease which is being put before the committee reflects a valid concern. We wanted you to speak to that.
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We are waiting for a full briefing on the common law with respect to children's right to consent. We haven't had that yet. We hope we will have it before the end of this afternoon, and that may help us. But we thought that your practical experience with the CFSA might be of some use.
The Chair: Excuse me. Before your response, could you please identify yourself for the record?
Ms Lafrenière-Davis: Yes. My name is Nicole Lafrenière-Davis. I'm director of children's services branch, Ministry of Community and Social Services. With me is Heather Martin, who is a policy analyst with the ministry.
I must apologize first to the committee that the person with the most intimate knowledge of the issues related is on holiday, and I'll try to answer with the knowledge I have.
We're aware, of course, that the children's sectors have some concerns; they have been expressed to us; we have been talking about these concerns. The Ministry of Health and the Ministry of Community and Social Services have listened to them. At this point, we feel that until the acts are actually implemented, we're more or less trying to guess at what the implications are going to be.
We quite understand that for service providers who are having to understand and try to respond to their mandate, this is a very difficult situation. We quite understand as policy people that the CFSA was indeed established in order to try and establish a balance between the child's rights, the parent's rights and the best interests of the child.
What the new bills are doing is to say, and our ministry's position is, that where the child is found capable, then that child has a right to consent. That is our ministry's position in that balancing of rights and best interests.
Mrs Sullivan: I suppose that some of our concern is reflected in the changes which would affect the incapable child and the cross-relationship between those acts. With the capable child we understand the common-law provisions which encourage, to the best of that capacity, the decision-making in terms of, by example, consent to medical treatment. We know that in other acts there are obligations to allow the child to make as much of a decision as possible or contribute to those decisions and to accept certain responsibilities at certain ages.
In your view, and I know that this is difficult for you because you're not the political wing of the Ministry of Community and Social Services, would it be a practical approach to ensure that the work of service providers, who once again are statutorily mandated under the CFSA, is protected under that act, to indicate somehow in our deliberations that the CFSA is not affected by Bills 109, 108 or 74, and that this would be the best way of ensuring that the legislation, which appears to be working for service agencies, continues to work?
Ms Lafrenière-Davis: Part of your question would necessitate a legal opinion because there may be situations where you would have certain children who have different types of rights where you would have one act superseded, and I think that might be a question that legal services can answer.
Mrs Sullivan: We'll wait for the opinion from the counsel to the Ministry of Health, I suppose, for those instances.
Mr Sterling: I have had some difficulty in rationalizing in my own view the expense we'll necessarily have to spend on this Advocacy Commission in terms of the evidence that there's widespread abuse of vulnerable people in the province of Ontario. I guess I have even less confidence in spending the money on vulnerable young people in terms of the evidence that there are not adequate protections for young people at this time.
Subsection 3(1) of the act says that the act applies -- I'm talking about Bill 74, the Advocacy Act -- "in respect of vulnerable persons who are 16 years of age or older." The second subsection says the act also applies in respect of other people, in other words, people under 16, "for the purpose of providing rights advice and other advocacy services" under Bill 109 and the Mental Health Act and the Substitute Decisions Act, Bill 108.
I think a lot of our problems with Bill 109 as we saw them put forward particularly by people dealing with mental illness in adolescents, people between 12 and 16, could be put to rest, or partially put to rest, let's say, if in fact they didn't have to go -- as I understood it, it's not so much that a rights adviser was there, but it's the process that is necessary in order to put this thing into play.
In other words, if you have a young person who is already rebelling against society, doesn't trust his parents, doesn't trust anybody, and you're trying to help him out, between the ages of 12 and 16, if you put a process in the middle of this emergency, then the ability of society to help that young person is going to be cut down substantially, or that's what we heard from Youthdale and we heard from other people who have to deal with these very difficult children.
You have all the experience compared to myself in terms of the protections that a young person has against someone involving himself or not consulting enough or the consent of the young person being taken away from him unjustly. Do you really see a need to protect the people under 16? Is it that critical at this time? Is there evidence of problems there?
We have the Child and Family Services Act, which is the balance that we heard talked about that tried to work out these things. Now we have the injection of this advocacy bill into that whole milieu or environment. I think we could put to rest the concerns with Bill 109 and the Advocacy Commission would be much clearer in terms of what it's focus would be, and that basically would be vulnerable adults, and the other legislation would take care of vulnerable children. I thought that's what the CAS was all about and all the rest of it. Are there not enough checks and balance in there? I'd like your experience on that.
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Ms Lafrenière-Davis: I think what you're asking is a personal opinion.
Mr Sterling: Or a political opinion, maybe.
Ms Lafrenière-Davis: I'm not sure that I can give a personal opinion, again for the same reasons we've mentioned before. You have heard, and these concerns have been presented to us, both from the rights advocates, who feel that there is indeed a need to protect children's rights better, and from those who might be saying that we're pushing the pendulum too far. I think right now we are only able to guess what will happen when in fact the bill goes through, if it does.
Mr Sterling: Can I ask a specific question? An adolescent who's 14 years of age is rebelling against everyone and is brought into a situation where he needs treatment, medical treatment, let's say, or maybe for a mental illness. What kind of protections do they have under the present law? Take away this. Can you answer that in terms of --
Ms Lafrenière-Davis: We're assuming that we're still under CFSA.
Mr Sterling: Yes. The Advocacy Act doesn't exist.
Mr Jim Wilson: Essentially, delineate the provisions in the CFSA.
Ms Lafrenière-Davis: Okay.
Mr Sterling: I guess my question is, is this going to add anything?
Ms Heather Martin: Currently, a child who is in need of treatment who would be 14 years of age could in effect show up at a hospital, either at the request of his parents or at the request of the children's aid society. The hospital would assess whether that child was in need of treatment or not. If the child was refusing treatment, the hospital could require that the child remain for treatment, and/or if the hospital didn't feel it could make that disposition, the child could leave.
Mr Jim Wilson: Just following on that, Youthdale raised the concern that in a secure treatment centre there would now be a dual review process, one introduced by this new legislation and one under the CFSA -- do you have any comments on that? -- and that in fact the entire review process may last longer than the average 14-day stay, and that a child who really wanted to be obstinate could in fact just spend the entire time at Youthdale going through two review processes.
Mr Sterling: Without treatment.
Mr Jim Wilson: Without treatment. That seemed to be a very real concern of theirs, and I assume the ministry has heard of this concern. Any response?
Ms Lafrenière-Davis: We have indeed heard this concern. We've heard the concern about the process and the time lapse, which may, some service providers say, force providers into a more intrusive intervention than if they had been able to intervene earlier. We've also heard from some other service providers and professionals that professional skill in trying to get that child to understand the implications of the treatment being proposed can be used in order to get the adolescent, even a rebellious adolescent, to understand the implications and indeed to agree.
Mr Sterling: Can I go back to the example you said there? There was one thing that sort of triggered my concern. You said that if the young person, the 14-year-old, shows up at the hospital and is advised of the treatment and the parents or the CAS and the doctor etc try to convince the person to undertake that treatment, there's nothing they can do to coerce that person to take the treatment, as I understand it, under the present law, so the person can walk.
All this act would do would be to inject a process and have an advocate or a rights adviser, if one was available, come into this scene. Of course the argument we have heard here is that all this can do is cause harm because of delay, and perhaps getting the wrong answer as well. The health care people and the CAS don't like getting the wrong answer.
What I would like to know is, are there complaints by young people who have been treated, after the fact, that they were coerced into having treatment? Is there any record of that?
Ms Lafrenière-Davis: I can't say. In my branch, and again I'll have to talk to my branch, if there have been some complaints, they would be with the office of child advocacy.
Mr Jim Wilson: Perhaps you could tell me. Under your legislation, the Child and Family Services Act, upon admission, or in the scenario we're using here, just to continue it, are the children advised by the physician or someone at the scene that they have the right to walk and to refuse treatment?
Ms Martin: They should be.
Mr Jim Wilson: It's a requirement in the act, is it not?
Ms Martin: Yes.
Mr Jim Wilson: So what are we doing by introducing a rights adviser to the scene? Would not the rights adviser simply tell them what they're already required to be told?
Ms Lafrenière-Davis: I think it would do more than that. I think under the proposed recourse there's actually a process that would be described to them. I think it would be a much more precise explanation of what the rights are.
Mr Jim Wilson: In terms of a person who's been deemed incapable, then the rights adviser of course would be able to tell him or her, "You have the right to object to this finding and here's the process," type of thing.
Ms Lafrenière-Davis: But the health practitioner, under the proposed legislation, would have to inform the child 12 and over that he is finding him incapable.
Mr Jim Wilson: Okay, and under the current situation that's the case. The health practitioner would inform the child that he's finding him incapable. What current rights does the child have under the CFSA then, after that point?
Ms Lafrenière-Davis: He can leave.
Mr Jim Wilson: The child can still object to the treatment and walk.
Ms Lafrenière-Davis: Yes.
Mr Jim Wilson: So I guess what I'm trying to figure out is, are we helping things or hindering things?
Ms Lafrenière-Davis: I think, if you're using your initial example of a child who is a 14-year-old child, and if he were found incapable, which is the situation we're talking about, under current legislation parental approval would be sought. A parent can give approval under current legislation.
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Mr Sterling: Can I ask this another way? What is the difference between how we treat a child who walks in, a 14-year-old, versus somebody who's 18? Is there any difference in terms of the protections of those two people as to how they are treated by the hospital?
Ms Lafrenière-Davis: Under current legislation?
Mr Sterling: Yes.
Ms Martin: Parental role would figure in for the child who's under 18.
Mr Sterling: And it would not otherwise?
Ms Lafrenière-Davis: Not for an 18-year-old.
Mr Sterling: So under 16 under the present law. If the 18-year-old were incapable, what would you do, or what happens to the individual?
Ms Martin: It would depend on whether the 18-year-old was in the care of a children's aid society or whether the 18-year-old was living at home with his parents. If he was living at home with his parents, the 18-year-old would basically be in charge of himself. The 18-year-old who is in the care of a children's aid society would be dependent upon the kind of order that existed in the children's aid society.
Mr Sterling: But if they were incapable and they said, "I don't want the treatment," they could walk out of the hospital and nobody else would be called in to try to convince --
Ms Martin: If they were between 16 and 18.
Mr Owens: I guess I have a fairly general question from the operational perspective of the ministry with respect to the Child and Family Services Act. If and when this legislation is passed, the various child service agencies have predicted dire consequences and an inability to treat children and all sorts of other catastrophic events taking place.
Is it the view of the ministry that the status quo will reasonably remain in force, especially with respect to the children's aid societies? Do you see these kinds of difficulties that they seem to predict arising, from your perspective?
Ms Lafrenière-Davis: There is no doubt that if legislation does go through, there will be an impact on service providers. They've made that clear to the ministry and to the committee. As a ministry, what our stance would be is post-legislation to discuss with the societies how they're going to be able to live with the new legislation, if they will have to negotiate different protocols, if they will have to change their internal policies. This discussion would take place with the societies to discuss what they feel is their impact.
Mr Sterling: I just have one question that relates to what Mr Owens said. I would debate him with regard to his characterization of the CAS, Youthdale and other people who are caring for young adolescents as saying that this is going to have dire consequences and the world is going to fall in. That is not the way they characterized it, as far as I was concerned, on this committee. In my view, they said there was going to be a great deal more difficulty in delivering their service. None of them said they were going to back away from their commitment to providing those services. In my view, they were not trying to exaggerate their position excessively.
Mrs Sullivan: I want to go back to questions relating to the emergency admission to secured treatment facilities, which was an issue that was placed before the committee in some detail.
We certainly know that while there are few young people in terms of numbers who are affected by those provisions, the Child and Family Services Act is broad in terms of the obligations on the care giver, on the parent and on the children's aid society, if the child happens to be in care, and includes, by example, rights advice for the young person, a route of appeal which will in fact, under the normal provisions in Bill 109, create a complete new process of rights advice and appeal, and indeed there may be some concern as to whether the consent-to-admission requirements of the Child and Family Services Act aren't completely taken out under Bill 109 if they no longer exist.
How is a social worker with a children's aid society, who has taken a child into care for the protection of that child, as he's obligated to do, to know what act is his guiding act, what services he is mandated to provide, what steps have to be taken along the way? Given very similar issues, whether it's rights advice or ensuring consent or treatment or providing consent itself, why should that social worker be put in a position of requiring the child to go through two processes, each of which may be intimidating, and also the health practitioner having to deal with the two processes? What's your advice going to be to the social worker? Where should the social worker take his or her direction from, the Child and Family Services Act or Bill 109?
Ms Lafrenière-Davis: I think my answer would be close to the answer I gave Mr Owens earlier, that should the legislation go through, there would have to be extensive retraining of the child protection workers and social workers in the agency in order to advise them of the steps that need to be taken and how they can really exercise their professional skills to make this as easy and understandable a process for the child as possible.
Some of you may remember that when the CFSA was passed, there was indeed a lot of controversy. There was a lot of training that was needed and the CASs put in place certain policies and guidelines to permit their staff to do the best job possible in protecting children. The same thing would happen post passage of this bill.
Mrs Sullivan: As policy advisers -- this is going to be a tricky question; you don't have to answer it -- do you think it's appropriate and would you be provided policy advice that would say that there is any reach into the best interests of the child to require the child to go through two review processes instead of one, which is what will happen?
Ms Lafrenière-Davis: I think we would have to decide at that time what would be our best advice.
The Chair: On behalf of this committee, I'd like to thank the Ministry of Community and Social Services for coming and answering some of the questions raised by this committee.
ONTARIO ASSOCIATION OF NON-PROFIT HOMES AND SERVICES FOR SENIORS
The Chair: I'd like to call forward our next presenters from the Ontario Association of Non-Profit Homes and Services for Seniors. Just a reminder that you'll be allowed up to a half-hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you're comfortable, could you please identify yourselves for the record and then proceed.
Mr Paul O'Krafka: Good afternoon, Mr Chairman. My name is Paul O'Krafka and I'm executive director of St Joseph's Villa in Dundas and president of the Ontario Association of Non-Profit Homes and Services for Seniors. With me is Michael Klejman who's our executive director at OANHSS as well.
The Ontario Association of Non-Profit Homes and Services for Seniors is a non-profit, charitable corporation which has been in existence since 1919. Our mission is to support and advance the interests of our members, thereby enhancing their ability to meet the needs of the individuals and communities they serve.
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OANHSS represents over 200 organizations providing services to some 140,000 seniors, or over 10% of Ontario's elderly population, through non-profit homes for the aged, seniors' housing and community support service agencies. Membership of the association is comprised of municipal and charitable homes for the aged which operate a variety of programs and services for seniors. Origins of our member non-profit homes go back to the mid-1830s and reveal a proud history of innovative and responsive programs which are reflective of the needs of the diverse communities in Ontario.
In March of this year we appeared before this standing committee and presented a submission on bills dealing with advocacy, substitute decision-making and consent to treatment. In May we received copies of the three bills with amendments proposed by the government, and now we appreciate the opportunity to comment on these amended bills.
In our original submission we supported Bills 108 and 109 while recommending some amendments. We're pleased to see amendments proposed for both bills, particularly the emergency treatment of incapable persons in Bill 109. In this submission we'll focus on Bill 74, the Advocacy Act.
Before doing that, relating to Bills 108 and 109, on Bill 108 our association endorses this bill but wishes to recommend that the title "advocates" throughout the bill be replaced with the term "rights advisers" to more properly reflect the role fulfilled with respect to the provisions of this bill. In terms of Bill 109, consent to treatment, we endorse this bill as it's been amended.
Mr Michael Klejman: This is Michael Klejman and I'm the executive director of the association. Turning to the third legislation, we would like to declare that we interpret the provisions of this bill from the perspective of elderly persons, who are the consumers of our services. We wish to stress the fact that there are many factors, physical, psychological and environmental, which affect the vulnerability of older persons, but at the same time not every 90-year-old person is automatically vulnerable due to the age factor alone. We believe that needs and circumstances of seniors who may be vulnerable differ significantly from other groups of vulnerable persons. This is why we continue to have concerns about the viability and appropriateness of putting all potentially vulnerable persons under this single piece of legislation.
We support many of the amendments which have been proposed, particularly those which establish an advisory committee, suggest a positive role of families and set out advocates' responsibilities.
We continue to have some concerns with the scope of power vested with the advocates. It is difficult to find many other examples where individuals without prior extensive training and a licensing process are entrusted with the power to pass judgements as to vulnerability and then to act on these judgements. In our recommendations, we aim to address this concern.
We submit to the committee the following amendments to Bill 74:
We recommend that the word "perceived" be deleted from section 2, the definition of "vulnerable person." We believe that advocates must base their interventions on information and on observations. It would be inappropriate and potentially dangerous to base interventions on speculations as assumptions made by advocates.
We further recommend that the Advocacy Commission be given the task of defining, either in regulations or guidelines, circumstances when advocates' involvement would be appropriate. We believe that where there are primary care givers, such as families, then the advocates' involvement, if required, will need to take a different focus.
We also recommend that advocates' rights of entry to care facilities, as stated in subsection 17(1), be the same as those applied to other premises. Subsection 18(1) details conditions when premises can be entered. We would like to see these very same conditions apply in subsection 17(1).
Before an advocate can have access to records without consent, an assessor, as defined in Bill 108, must assess the vulnerable person as incapable of giving consent. As stated above, we have concerns that advocates, in several instances, are empowered to act as both the judge and the jury.
In another amendment we suggest that the mandate of the advisory committee be detailed in regulations and should include giving advice on such matters as qualifications, standards and a code of conduct for advocates, procedures for dealing with complaints and specific guidelines for involvement of advocates. The amendment creating an advisory committee needs to be supported through provisions spelling out the role and responsibilities of such committees.
Finally, we urge the government to stage the implementation of the advocacy program in two phases. The commission should be created and given the time to carry out its developmental tasks, which would include drafting of regulations to the act. Only when this task is completed should the advocacy program itself be introduced.
This, members of the committee, concludes our presentation, and we'd be glad to answer any questions you have.
Mr Sterling: I'm concerned somewhat, as you are. I don't disagree with any parts of your brief and therefore am very supportive of some of the amendments you're looking forward to. The part I guess I'm concerned with is the advocate's access to medical records. What is your understanding of their limitation? For instance, is it clear to you what an advocate must do before he asks for this record? Does he have to have a written direction from the vulnerable person? I practised law before I was engaged in politics, and before I acted on behalf of somebody I wanted to be certain that he retained me to do whatever I was going to do. I'm not clear what an advocate has to do in order to gain that authority.
Mr Klejman: Your question, as I see it, relates to one of our proposed amendments. I agree with you that the concern is that, in effect, if an advocate judges that an individual is incapable of making a decision as to whether there should be access to medical documentation, whatever documentation may be in a facility or a care setting, then the advocate simply requests those documents. Whether it's done in a written form or verbally is not spelled out, obviously, in the bill right now, but it appears to us it is to be that simple: Simply ask for whatever documentation may be on file in that setting.
Mr Sterling: Perhaps the parliamentary assistant can answer me. What kind of authorization must an advocate get before he asks for a medical record of a vulnerable person?
Mr Winninger: Which parliamentary assistant are you seeking an answer from?
Mr Sterling: Either.
Mr Malkowski: I'd like to refer the question to Mary Beth.
Ms Valentine: It's my understanding, once again not being legal counsel, that issues such as forms and releases, those types of things, get developed during the regulation process. We certainly heard a number of times during presentations that there will need to be consultation on issues of this sort as regulations are developed. Regulations will be brought forward by the commission and presented before they are put into place. A consultation process would take place. The access issue is the development of a release-of-information form. Those types of things would be developed during the regulatory phase.
Mr Sterling: That's not a very good answer.
Mr Winninger: I thought it was.
Mr Sterling: What it's saying is, "We'll make up the rules later as to whose information we can get."
Mr Winninger: We're just discussing the issue of forms, if you were concerned what kind of form would be used to give authority --
Mr Sterling: No, I'm not concerned about a form. I don't care about a form. I care about the fact that an advocate can get access to a vulnerable person's medical records without any authority.
Mr Winninger: The consent would flow from the vulnerable person. If the vulnerable person were incapable of giving consent, then the substitute decision-maker would give the consent. But it wouldn't be without authority.
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Mr Sterling: Where does it say that in the act?
Mr Winninger: Let's go to the section. Section 27?
Mr Sterling: It's section 24.
Mr Klejman: I believe it's subsection 24(4) that gives the advocate the right to obtain that information.
Mr Sterling: Does he have to refer to anybody? Does he have to go to the commission? How many people are involved in this decision? Is it just the advocate alone who makes this decision?
Ms Valentine: Excuse me. You have to go back and look at section 15. The whole issue has to be read in relation to the role of the advocate, the advocate's relationship to substitute decision-makers etc. The advocate has consent of the vulnerable person who is able to consent. If there is a risk of serious harm to health or safety is the only time that there's any ability for an advocate to have access without consent, and it's limited to that specific situation. At any other time, if there's a concern about care etc the advocate is to be provided the name of the substitute decision-maker, guardian etc, whom he may make contact. If the substitute decision-maker wishes, he can provide consent to the advocate.
Mrs Sullivan: Mr Chairman, I beg to differ. I think under section 25 that's not correct. The advocate can have access to a vulnerable person's records with the permission of the commission for the purpose of systemic advocacy. But none the less, those are individual records, clinical records and other records.
Ms Valentine: They are not personal identifiers in relation to systemic advocacy. It's the same type of access that is now currently available for research. That's subparagraph ii of paragraph 2 of section 27.
Mr Sterling: If a person is incapable, is he capable of giving consent?
Ms Valentine: Is the issue whether the person is capable of giving consent to the advocate to access his records?
Mr Sterling: Yes, but if they are incapable to reason?
Ms Valentine: I think, as we've heard numerous times and as outlined in the guardianship and the consent legislation, consent is based on the specific issue at hand, so there's not a blanket determination that a person is incapable for every facet of his life, unless that person is conscious or something to that effect. Each issue has to be dealt with at the time. Perhaps people relating to the consent legislation would like to further address that.
Mr Sterling: Whom is the advocate accountable to with regard to this information?
Ms Valentine: To the client, primarily. Again, the confidentiality provisions are very strict disclosure guidelines and with personal penalties for the advocate for inappropriate disclosure.
The Vice-Chair: Thank you very much, Mr Sterling. Any more comments or questions? Seeing none, I want to thank you for taking the time to appear before us today.
Mr Klejman: Thank you.
The Vice-Chair: Next we have the Canadian Mental Health Association, please.
Interjection: Can we recess for two minutes?
The Vice-Chair: We are recessed for two minutes.
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CANADIAN MENTAL HEALTH ASSOCIATION, ONTARIO DIVISION
The Vice-Chair: I'd like to call this back to order. You've up to a half-hour for your presentation. The committee would appreciate it if you would leave some time at the end for some questions and comments. You can begin any time you like. Would you please read your names into the record.
Mr Hugh Tapping: My name is Hugh Tapping. I'm a member of the board of directors of the Canadian Mental Health Association, Ontario division. I am chair of the policy advisory committee. I'm here today with Carol Roup. She is our senior director of policy, research and branch services, and the acting executive director during vacation time.
We do not have a written submission for you this time. We suspect that you've already read enough, in addition to which we frankly did not had enough time to do as adequate a job as we would have liked if we were going to be committing ourselves to a formal presentation on paper. So this is going to be a little informal. I also suspect that you've probably just about had enough by now anyway. There's one more presentation to go and it'll be time for clause-by-clause.
This invitation to comment on the proposed legislation, as amended, is almost an honour for us to be asked to come back and talk yet again about it. We're most pleased with the efforts that we have seen by this committee, this government and the opposition parties in bringing this legislation forward. We believe the many amendments we have seen have improved things a great deal. At the same time we still think it is not perfect. We don't think it ever will be perfect.
Some of our issues this committee listened to are most gratifying to see, such things as the role of families, for instance. This wasn't difficult for us; we've just been continuing to advocate along the lines of the positions and approaches we've been talking about for a long time. Other positions have not been so easily arrived at.
We are members of the Ontario Advocacy Coalition. We support the advocacy coalition's brief to you. We did have a lot of trouble with the notion of partial guardianship legislation. It's one of those things that used to be called a conundrum, also known as "damned if you do and damned if you don't." We have long advocated for at least restrictive alternatives. At the same time, we do have a lot of experience in this field.
One might have expected that a proposal of less than complete loss of autonomy wouldn't have presented a problem, but it did. On one hand, there is this appearance of a minimal sort of intervention. But history gives us some warnings here. Partial guardianship could be the thin edge of the wedge leading to an incremental loss of autonomy. Partial guardianship could also just plain appear less intrusive than what it actually is, and therefore it will be very easy to come up with implementation of this legislation, placing people under partial guardianship.
We have been monitoring and doing our own sorts of advocacy for a very long time. Over time, things do get better. As a citizen organization, I guess it's part of our job to remind people who make legislation that it isn't only the legislation that makes changes happen. For instance, the proposals we have seen have generated some publicity, not a lot, in the press -- pretty negative stuff, a lot of it. It's especially concerning when we see objections being raised to things that are not in the act in any way, shape or form. We've heard many concerns raised about children and about people who really need help and don't want it and so on.
By nature, it's going to be the big problems that are going to be bringing themselves to the advocates, to the Advocacy Commission; it's not going to be nickel-and-diming people to death. That is not the intention of the legislation, nor is it going to be the intention of the people who will be on the Advocacy Commission.
From the viewpoint of the Canadian Mental Health Association, we support the amendments that have been proposed. We must see this legislation passed as soon as possible. It is not possible to continue refining this without seeing it drop off the legislative agenda. It has been a decade or more that all of the political parties have been addressing this issue. There have been reports, there have been reports and there have been more reports. It's time now to proceed.
As I said, the legislation is not and cannot be perfect. It is important that there be some sort of ongoing review and consultation, not about the legislation in and of itself but about the Advocacy Commission and the advocates' work. Knowledge must be accumulated. We have big-picture reports. We need to get this commission going so that specifics and details can be learned and patterns spotted that now are just anecdotes.
I'm going to turn it over to Carol Roup, who will address some of our issues with the proposed amendments. At the end, if there is still time for questions and so on, I might have a few other things to say.
Ms Carol Roup: My name is Carol Roup. I'm the senior director of policy, research and branch services for the Canadian Mental Health Association.
For the record, I should just remind everybody that through 35 branches located across the province, a range of community mental health services and programs are provided by the CMHA to local communities. These services include employment, housing, social rehabilitation, case management, advocacy and public education. With advice and input from both staff and volunteers involved with the provision of these services, the Ontario division devotes considerable effort to ensuring that policies, practices and legislation respect the human and legal rights of people with mental disabilities. In this respect, the Ontario division board of directors places a very high priority on the organization's role in systemic advocacy. Our organization, as Hugh said, is an active member of the Ontario Advocacy Coalition, which presented its response to you last week. We are here in support of the position of the coalition and wish to commend the co-chairs of that very special coalition for leading us through a very thorough, open and educational process, the outcome of which we believe has led to the coalition's very thoughtful recommendations.
As Hugh has said, we were very pleased to note that various amendments reflect changes in areas where our organization did have concerns. In particular, we were pleased to note that the notion of partial guardianship remains in the legislation. We are still supportive of and committed to that. We are also very pleased to note that the amendments provide for an advisory committee to the commission, which will facilitate the voice of family members in particular, and service providers as well as the community.
In general, we believe these amendments have achieved a sensitive balance of interests and a greater clarity of purpose and intent of the legislation, especially with respect to the role and responsibilities of advocates. I think this was quite misunderstood around the first set of responses and I think it's much clearer in the amendments now.
However, we do wish to lend some support to several issues the coalition has highlighted that still need attention. With respect to the Advocacy Act, we have one point. This has to do with section 15, which is on page 10 of the act. This is the provision that exempts organizations representing people with neurological disabilities from the general rule that organizations participating in the Advocacy Commission appointments process must have, as the majority of their members, people whom the organization represents. I believe that Mr David Baker, executive director of ARCH, has provided this committee with excellent arguments in this regard. The CMHA supports the position that this position is unacceptable. Given that the amendments provide for the voice of non-disabled family and service providers, it is quite unnecessary to place this barrier in the way of those with neurological disability from organizing themselves and speaking for themselves.
With respect to the Substitute Decisions Act, we have two points to make: The first point has to do with section 15, which I believe is on page 9 of the act. This section provides for the public guardian and trustee as statutory guardian of property. We support the position of the OAC that Bill 108 provides a fair and efficient means to determine capacity and appoint a substitute for Ontarians in all settings. As the OAC's brief points out, the key feature of the SDA is the authority, while competent, to execute a power of attorney to select the person whom one wishes to manage one's affairs in the event of a subsequent incompetence. However, section 15 makes the public guardian and trustee statutory guardian whether or not the patient has previously executed a power of attorney naming someone else.
The coalition has suggested changes to the Mental Health Act while at the same time maintaining the requirement that every newly admitted psychiatric patient is assessed for financial incompetence. If the individual is found to be incompetent, the public guardian and trustee would be notified for the purposes of invoking the process of the Substitute Decisions Act as described in section 16, and we would support that amendment.
A second point with respect to Bill 108 is about clause 56(4)(a). This clause addresses a guardian's authority to admit a person to a psychiatric facility. The CMHA believes that the Mental Health Act adequately provides for involuntary admission to a psychiatric facility when mental disability may result in (1) serious bodily harm to the person, (2) serious bodily harm to another person or (3) imminent and serious physical impairment of the person. There appears to be no reason to authorize forced hospitalization when none of the above criteria are met and the person has never indicated, while competent, a wish to be admitted against his will during a period of incapacity. We would recommend that the suggested new subsection being recommended by the coalition be reconsidered.
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With respect to the Consent to Treatment Act, we have one point. This has to do with subsection 1(1), page 3 of the act. This subsection allows regulations to be passed which allow certain persons who do not work for the Advocacy Commission to provide rights advice. Again, we support the OAC's suggested amendment, which addresses potential conflict of interest by excluding individuals who provide services from becoming rights advisers.
That concludes the specific points we wish to make. I would like to reiterate Hugh's points, and in particular stress the importance of putting this legislation in place. The CMHA strongly recommends that, without delay, the commission be established, properly resourced, and that trust be placed in the commission to carry out ongoing research into its effectiveness for vulnerable people.
Our organization would also like to emphasize the importance of a broad public education process, and to recommend that a mechanism for ongoing monitoring, consultation and evaluation of the legislation be put in place. As Hugh said, only time and experience will advise us all on its workability, and certainly no more consultations are necessary.
The Chair: Questions and comments?
Mrs Sullivan: Thank you. I would be interested, knowing the broad kinds of work the Canadian Mental Health Association does, in whether you are satisfied with subsection 7(2) of Bill 74, which would mean that an organization such as your own could not be authorized by the commission to provide functions that are set out in clauses (1)(a), (b) and (c), including providing advocacy services on behalf of the commission. Why do you think your organization should be excluded from that involvement with the commission?
Mr Tapping: A two-part answer. Carol first.
Ms Roup: Our organization struggled a great deal with this. A number of our branches are forced to do advocacy for one reason or another, and at times have been put in positions where they have to do personal advocacy and take on roles that perhaps are not appropriate, but because it's the only agency in town, it has done this for compassionate reasons.
However, we have come to the conclusion that the fact that we provide services really is a conflict in terms of providing advocacy under the commission. I believe we could do all kinds of systemic advocacy work and we could continue to do much of the work we do, but in terms of operating under the commission, we are supporting the fact that providing services and being an advocate at the same time poses a conflict. Several of our branches which do that kind of work have suggested that, at times, the fact that they provide services gives them the kinds of insights they need to do better advocacy. I'm sure that's true under certain circumstances. But I think that, as a principle, service providers who try to be advocates at the same time are placed in incredibly difficult positions. So we are supporting that.
Mrs Sullivan: I suppose one of the issues that is problematic here is that, on a regional basis, there will be people in various parts of the province who have been dependent on organizations such as your own, through regional branches or local operations, who will have less access to advocacy services.
Ms Roup: Except that I expect that our branch services will have the ability, on the advice of a vulnerable person, to alert the commission. It's not abandonment, I hope, but I think there's a legitimate role for a commission in terms of advocacy services.
Mr Tapping: One of the factors that led us to take this position, which admittedly does look kind of strange -- it's cutbacks time, it's reallocation of resources and all of those good words and here we are coming forward saying, "Thank you, we don't want to do this," even though there are economic interests that would say that we could, perhaps, try to do this. But we'd be placing ourselves, our branches, our programs, in harm's way, in a position of temptation. It is not fair.
We have mental health in the workplace projects, too. It's not fair having somebody in this office raising a ruckus about something that the person in the next office has been doing. Our understanding of the way people work is that you'll end up having something less than the kind of advocacy that the person who needs and wants that advocacy is looking for. We could place our own employees in a position of conflict of interest, and as we all know, that leads to morale problems and so on.
We don't want to be all things to all people. I really don't see this as being a replacement for the kind of ongoing advocacy of many kinds that's done already. We see this as an addition to it. We also see a place where we're into catch-22, and there's nothing we can do now except grin and bear it, of having somewhere else to steer a person to, where there would be the time and resources available.
Mr Sterling: I just have a comment, and I want you to know that both opposition parties were instrumental in having these hearings on the amendments. It was only through us standing up and saying there were 199 amendments to the bills and it was necessary that the government have a second chance for people to talk again did these hearings really take place. I congratulate the government for acceding to that request.
Also, I want you to know, the opposition parties, in order to get these hearings, had to give up some rights that we have in the Legislature. That is that we continued our position that we would be cooperative and constructive in trying to get this thing through within a reasonable time frame. So we have restricted our ability, when the legislation goes back to the House, to obstruct, to drag it out or whatever it is.
No question we play politics in order to put forward our positions, but we recognize that it is time to resolve these issues and that we're going to have to do it. It doesn't matter whether the Liberal Party or the Conservative Party forms the next government, or the NDP, whoever it is has to resolve the problem. We've recognized that and I want you to know that we have worked through these long hearings etc not because we love to be here but we thought it was necessary. Quite frankly our only concern has been that we have not had a focus on it by the ministers who are responsible for the legislation that we would have like to have seen. We think this legislation is that important that we would have liked to have had more ministerial participation.
Mr Owens: I just have a comment as well, and perhaps you'd like to respond to it, either Mr Tapping or Ms Roup. In terms of your comments with respect to guardianship, I empathize with them and am slowly, or rather I should say quickly, coming to the view that perhaps if we are to have guardianship provisions they need to operate on two different levels. One level would address the types of difficulties that have been expressed by organizations like Ontario Friends of Schizophrenics that have some extremely difficult situations to deal with in terms of having their children or adults in their families treated.
However, what I do hear from presenters like yourself and presenters like the Ontario Association for Community Living and People First of Ontario is that there has to be a strong sense that independence is going to be maintained for individuals and lengths are going to have to be taken to assure that a person is just not put into guardianship without some kind of extraordinary process taking place.
As I say, we need to have language that addresses the catastrophic issues, but also we need to address the independence of the individual, such as people from People First, persons with communicative disorders, so that we don't just assume.
We're talking about reallocations and cutbacks. I guess my concern is that what may happen is that service providers, with money at a premium, will not have the ability in their view to go that extra length. It will simply be easier to place a person under guardianship, and we need to prevent that kind of thing from happening.
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Again, your comments with respect to making sure the commission is well resourced are dead on. This is not a program that can be started by this government, and at some point in the future when we cease to be the government the incoming party removes the funding or downgrades the funding level that's required. This is just not something that can be stopped and started on a whim. We are clearly talking about people's lives in this process.
Mr Malkowski: Thank you for your presentation today. I'd like to respond to your concern related to neurological disabilities organizations and the fact that they are not able to participate in the nomination process. Subsection 15(2) talks about exceptions in cases of organizations that are referred to in paragraph 6 of subsection (1). I'm wondering how you feel about that.
Mr Tapping: It is extremely strange, from my personal perspective, to see this inclusive cross-disabilities method of organizing and structuring the Advocacy Commission and then turning around and doing a list of exceptions. I am not aware, for instance, that any of those members of the bar association who have epilepsy, which is a recognized neurological condition, are also vastly incapacitated, or they wouldn't be functioning as lawyers.
There's a member of a provincial Legislature in this country who has Alzheimer's disease and is out of the closet about it. There have been suggestions there's something wrong with a great number of our elected representatives, but why make these exceptions? They stand out because there is no explanation as to why this, that or the other group is so completely incapable of running their lives, their organizations and so on.
You heard from David Baker that there are already groups of people out there with those labels. It just makes no sense to us to exclude them. As I said, it simply stands out. There is no explanation as to why when we're looking at all these different groups who have what we call disabilities or handicaps. Why put a rider on it? Unless there is some logical explanation for it that has not been shared with the people of this province, I'd be quite comfortable with seeing it just dropped as an issue.
Mr Sterling: I'd just like to make a point of clarification.
The Chair: Mr Malkowski is still --
Mr Sterling: It's just a point of clarification, Mr Chairman. It's a requirement, when you're a member of the Legislature, that you have a neurological impairment.
Mr Tapping: Thank you, Mr Sterling. I'd long suspected that.
Mr Malkowski: I think we will be considering taking out that exception, so I think we are going to be addressing that concern.
The Chair: Mr Tapping and Ms Roup, on behalf of this committee I'd like to thank you for taking time out this afternoon and giving us your presentation.
Mr Tapping: We've got one more minute left and I'd like to remind you folks we've got one more to go. I want to give my motivational speech here now. I hope you've all seen Ernie Lightman's report. I doubt anyone has read it yet in its entirety. I haven't.
Many vulnerable adults in Ontario live in conditions that we associate with the poor of Victorian England, not with residents in late 20th-century Canada. Ontario citizens, voters, with psychiatric histories are living six or more in a room, sleeping in bunk-beds if they're lucky and on the floor if they're not. They have no protection from exploitation, abuse and capricious behaviour by landlords, the landlords' employees and sometimes complete strangers. Frail seniors lie bedridden and ignored.
Given that this is the situation, I think an awful lot of the concerns that have been expressed by some of the professional groups about how difficult it's going to be to put a Band-Aid on someone -- we're a generation away at least from people finding the time, let alone the inclination, to worry about Band-Aids.
The situation today remains pretty awful for tens of thousands of us. So let's do it. Let's see this Advocacy Commission and let's revisit it in a year or two and maybe we can make some further changes, but for now, pass it. Thank you.
The Chair: Thank you very much.
CHEDOKE-MCMASTER HOSPITALS / MCMASTER UNIVERSITY RESEARCH ETHICS BOARD
The Chair: I'd like to call forward our next presenters, from the Chedoke-McMaster Research Ethics Board. Good afternoon.
Just a reminder you'll be allowed up to a half-hour for your presentation. The committee would appreciate it if you'd keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you're comfortable, could you please identify yourself for the record and then proceed.
Dr David Rosenbloom: My name is David Rosenbloom. I come here this afternoon wearing several different hats. I'm a health professional; I'm a pharmacist, in fact. I'm a researcher; I do clinical research. As was stated, I am the chairman of the joint Chedoke-McMaster Hospitals/ McMaster University Research Ethics Board in Hamilton.
Just before I begin I'd like to thank Lisa Freedman for directing me to do my homework for this presentation, as a result of which I can be mercifully brief because I will not repeat what's gone before in the previous weeks, having read the Hansards that have been produced as a result of the hearings here.
You've heard, in the first two weeks of hearings, excellent presentations by Dr Lowy, Professor Dickens, Drs Tucker, Schwartz and Tator from the University of Toronto, from Drs Greengarten, Stus and Conn from the Baycrest, from Dr Goldbloom from the Hospital for Sick Children and from Freeport Hospital and particularly from Dr Borwein from the University of Western Ontario ethics committee and from Judith Miller for the National Council on Bioethics in Human Research. Their reports summarize everything I would have had to say about the role of research and the issues of consent and the issues of advocacy. They were very eloquently presented by those people.
One of the issues that's been brought up by people around this table is that research was not intended to be included in the legislation, and I acknowledge that this is the case. However, it may potentially be included as a result of the legislation in an unintended way. There are a number of possible things one could do to deal with that, because if it is included as part of the legislation, no matter how unintended, the problem is the research will come to a halt, and those vulnerable groups in the population who most need to benefit from the research being done -- so I come here not with a criticism but with several constructive suggestions to make.
One suggestion is that you wait for the Weisstub report. The problem with that is that by the time it comes out it'll be too late to have amended this legislation, so I do not recommend that. Another suggestion that's been made around this table is to leave the legislation as written and to let the application of common law be used to determine the outcome with regard to research. The problem with that approach is that the application of common law could be vastly different depending on the interpretations of lawyers and judges, and it would also place the research ethics boards in jeopardy from the legal proceedings.
A third suggestion that was made by Dr Borwein is to amend or delete paragraph 15.1 of Bill 109, as well as various subsections: 47(6), 56(5) of Bill 108. This committee has discussed those possibilities.
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But I have a fourth suggestion, which is not an original idea of mine but one I first heard presented by Paul Wessenger. He gave the opening address at the Canadian Institute of Law Medicine, and in a forum entitled Health Science Research: Ethics, Law and the Role of the Public on June 11, this year, he suggested that legislation be developed to empower the research ethics boards to have the authority to sanction research, with the appropriate safeguards built in. The advantage of such an approach is that it overcomes the problems of application of different interpretations of common law. It addresses the needs of patients in the spirit of this present legislation and it provides a safeguard for the research ethics boards, which they may not have at present, to ensure that they are operating within the law. In other words, it's a win-win situation for everybody concerned.
You have experts capable of writing such legislation who have a knowledge of the law, of ethics and of health care, such as Gilbert Sharpe. My strongest recommendation is that you take this last option and advance the course of health care by empowering the research ethics boards in law to sanction research, with the appropriate safeguards, in the populations who, ironically, would be most penalized through inappropriate and unintended application of this present legislation.
Mrs Sullivan: Your presentation is short and your recommendation is one that I don't think has been before the committee before, in that it would provide greater responsibility in the public hospitals' ethics boards for determining the appropriateness of research, presumably on incapable people.
Dr Rosenbloom: Yes.
Mrs Sullivan: And would eliminate some problems which were made very clear to us by organizations such as the Alzheimer association. But in my view there are other associations where research efforts on incapable people may assist if not the people themselves who are incapable but the next generation.
What kinds of safeguards do you see as being guides for ethics committees in determining the parameters of research on incapable people? What areas do you think that they should be looking at?
Dr Rosenbloom: The present function of research ethics boards is, in fact, to protect patients, and I think that has to be made paramount. They are called ethics boards -- unlike in the United States, where they are called institutional review boards -- and the first thing they review is the methodology, because if the methodology is inappropriate, the research is not ethical and it should not be done.
The types of people on an ethics board allow many safeguards already. There are ethicists, there are people with content knowledge, people with methodological knowledge, there are laypeople, and, in fact, many ethics boards, such as ours, also have lawyers on them as well.
Should there be representation from our advocates for the type of individuals who are the vulnerable ones, in particular about research protocols? I frankly believe that ought to be discussed and debated, as opposed to my making a recommendation. I can see many positive reasons for including such people, but remember there already are laypeople on these boards. So the question of the need for duplication is there, and I think it's something that ought to be discussed in a broader forum.
Mrs Sullivan: There certainly have been medical ethicists and legal scholars who've looked at the nature of research that could be allowable on incapable people to include areas where the research would only be approved if there was minimal discomfort or other considerations with respect to the personal reaction of the patient. Is that something that you think can be codified?
Dr Rosenbloom: Yes, I do. In fact, I think that we do. We would take those considerations into account right now. We've been doing this all along. A lot of the issues are actually quite subtle, as I know you're aware from the comments that I've seen you make at the previous hearings.
For example, in a study to determine if children who don't grow at an appropriate rate should receive hormonal treatment that may help them grow, when one researcher suggested giving one intramuscular injection a day, one committee recommended no, give a constant infusion; it would be more acceptable.
The committee often goes even further in the direction of improving patient care than researchers feel the climate allows them to go. There are subtleties in terms of how the researchers look at how they might be criticized when in fact they may do more harm by not going far enough to get at the answer that's most applicable to that patient.
The committee often agonizes over some of these decisions. The committees spend hours every month debating these issues. It might be an appropriate suggestion for those people involved with penning the legislation to actually attend some of those committees and look at what goes on and look at the safeguards.
Mrs Sullivan: This is an area of particular interest to me. Since we now have the counsel to the Ministry of Health with us, I would be interested in his moving to the table to talk about the potential of perhaps an amendment to the research section of Bill 109 that could provide for the kind of suggestion that is being presented in this presentation.
Mr Gilbert Sharpe: The notion of having protective legislation that would enable research on incompetent people and children to proceed with adequate protections is something that's been debated for a long time. About a dozen years ago, we worked on provisions that could respond to this concern. As we know, Professor Weisstub has been asked to study the issue, along with a number of other issues. It would be premature for me to guess at what he might be coming down with this fall. But certainly it's possible to structure legislation that would empower the research ethics boards to review protocols that involve research on incompetent people. Following certain safeguards and clear criteria such as a risk-benefit analysis, for example, one could establish a mechanism, perhaps with independent representation for the incompetent person and an appeal to court from their decision where warranted. So there are certainly a number of models that one could look at that might address the problem.
One of the concerns of the research community has been that there may be a case lurking around the corner similar to the Eve case regarding the sterilization form, which said that ultimately no one, including a guardian, could in common law consent on behalf of an incompetent person to a sterilization procedure in the absence of enabling legislation with adequate safeguards. Where a case like that comes through the courts on the research side, perhaps some of the research currently being approved on Alzheimer sufferers and others might have to stop. So there certainly are options available that could be examined. Again, I have to stress that I know the ministry has commissioned Professor Weisstub to advise on some of these issues, not just for research but for other non-therapeutic interventions on incompetent people as well.
Mrs Sullivan: Mr Chairman, you'll recall in the first round of hearings we were assured that the Weisstub report would be available to us before we concluded our discussion on Bill 109. Of course that is not available to us, so we don't have either recommendations on the research elements of the bill or on the assessment elements of these bills. It's a major weakness, because the consent elements are very clearly linked with research. I bet you any money we won't have anything on the table for years and I think that's a shame.
Mr Sterling: I don't have any questions. I understand what you're driving at and I think it's a very interesting approach.
Mr Owens: My comments are similar to those of Mr Sterling. Mrs Sullivan has probed the issue quite effectively.
I have a quick question: In terms of legislative language, do you feel the language should be narrow in terms of describing the types of research that could go on? My concern is that we've heard evidence during the hearings that aversion therapy is still ongoing in this province and I certainly wouldn't want to have research being performed on incapable people with respect to some of the tools that are used in aversion therapy. However, I would be interested in seeing ongoing research, for instance, into neuroleptics which perhaps wouldn't have the kinds of side-effects the current products have. So my question is, would you like to see a broad scope of language or would you favour a narrow, more defined process?
Dr Rosenbloom: Actually, I would like to see a broad scope of language. It's my firmly held belief that patients will do much better if they're in a research protocol than if they're under routine care, because the quality control of the care that's given to them on a research project is much more intense: They're seen more often and they're looked at more closely for adverse effects. Neuroleptics may develop adverse effects that, if you're not looking closely for them, will go unnoticed, which is why it's often a shock when a drug is withdrawn, because people have not been looking for those adverse effects. On research protocols those patients are looked at more closely. One won't know if they develop adverse effects unless one does research, so narrowing it could be more harmful, in fact.
The Chair: Mr Rosenbloom, on behalf of this committee, I'd like to thank you for taking the time today to give us your presentation.
Seeing no further business before this committee, unless we hear otherwise from the House leaders, this committee stands adjourned until August 31.
The committee adjourned at 1633.