COLLEGE OF PHYSICIANS AND SURGEONS OF ONTARIO
PSYCHIATRIC PATIENT ADVOCATE OFFICE
NIAGARA MENTAL HEALTH SURVIVORS NETWORK
INFORMATION AND PRIVACY COMMISSIONER OF ONTARIO
CONTENTS
Tuesday 6 February 1996
Advocacy, Consent and Substitute Decisions Statute Law Amendment Act, 1995, Bill 19, Mr Harnick /
Loi de 1995 modifiant des lois en ce qui concerne l'intervention, le consentement
et la prise de décisions au nom d'autrui, projet de loi 19, M. Harnick
College of Physicians and Surgeons of Ontario
Dr Michael Dixon, registrar
Dr Helen Gordon, president
Dr Bernard Hammond, public member of council
Linda Bohnen
Brenda Singer
Psychiatric Patient Advocate Office
Brock Grant, acting director
David Giuffrida, legal counsel
Chedoke-McMaster Hospitals
Dr Adrian Grek, chief, geriatric psychiatry service
Ontario Advocacy Coalition
Orville Endicott, coordinator
Mae Harman, co-chair
Patricia Bregman, lawyer, ARCH
Ontario Advocacy Commission
David Reville, chair
Marilyn Heintz
Niagara Mental Health Survivors Network
Angela Browne, executive director
Robert Walsh
Naomi Mori; Aaron Shelbourne
Information and Privacy Commissioner of Ontario
Tom Wright, commissioner
STANDING COMMITTEE ON ADMINISTRATION OF JUSTICE
Chair / Président: Martiniuk, Gerry (Cambridge PC)
Vice-Chair / Vice-Président: Johnson, Ron (Brantford PC)
*Boyd, Marion (London Centre / -Centre ND)
Chiarelli, Robert (Ottawa West / -Ouest L)
Conway, Sean G. (Renfrew North / -Nord L)
*Doyle, Ed (Wentworth East / -Est PC)
*Guzzo, Garry J. (Ottawa-Rideau PC)
Hampton, Howard (Rainy River ND)
Hudak, Tim (Niagara South / -Sud PC)
*Johnson, Ron (Brantford PC)
*Klees, Frank (York-Mackenzie PC)
*Leadston, Gary L. (Kitchener-Wilmot PC)
*Martiniuk, Gerry (Cambridge PC)
*Parker, John L. (York East / -Est PC)
*Ramsay, David (Timiskaming L)
*Tilson, David (Dufferin-Peel PC)
*In attendance / présents
Substitutions present / Membres remplaçants présents:
Caplan, Elinor (Oriole) for Mr Conway
Clement, Tony (Brampton South / -Sud) for Mr Klees
Grandmaître, Bernard (Ottawa East / -Est) for Mr Chiarelli
Johns, Helen (Huron) for Mr Hudak
Marchese, Rosario (Fort York) for Mr Hampton
Also taking part / Autres participants et participantes:
Ministry of the Attorney GeneralSpinks, Trudy, manager, implementation support and counsel, implementation support unit
Ministry of HealthPerun, Halyna, counsel, legal services branch
Clerk / Greffière: Bryce, Donna
Staff / Personnel: McNaught, Andrew, research officer, Legislative Research Service
The committee met at 0902 in room 151.
ADVOCACY, CONSENT AND SUBSTITUTE DECISIONS STATUTE LAW AMENDMENT ACT, 1995 / LOI DE 1995 MODIFIANT DES LOIS EN CE QUI CONCERNE L'INTERVENTION, LE CONSENTEMENT ET LA PRISE DE DÉCISIONS AU NOM D'AUTRUI
Consideration of Bill 19, An Act to repeal the Advocacy Act, 1992, revise the Consent to Treatment Act, 1992, amend the Substitute Decisions Act, 1992 and amend other Acts in respect of related matters / Projet de loi 19, Loi abrogeant la Loi de 1992 sur l'intervention, révisant la Loi de 1992 sur le consentement au traitement, modifiant la Loi de 1992 sur la prise de décisions au nom d'autrui et modifiant d'autres lois en ce qui concerne des questions connexes.
COLLEGE OF PHYSICIANS AND SURGEONS OF ONTARIO
The Chair (Mr Gerry Martiniuk): I call this meeting to order. This is the second day of the hearings of the administration of justice committee regarding Bill 19. This morning our first witnesses are representatives of the College of Physicians and Surgeons, who will have one half-hour, including questions, to make presentation. Identify yourselves for the purposes of Hansard.
Dr Michael Dixon: Good morning and thank you. I'm Michael Dixon. I'm the registrar of the College of Physicians and Surgeons, and with me is Dr Helen Gordon, the president of the college, and Dr Bernard Hammond, a public member from London.
Thank you for the opportunity to participate in this hearing on the Consent to Treatment Act. This is an act that in our view badly needs major change and improvement in order to make it work in the best interests of those in need of timely care.
We have said in the past that four broad areas of the act needed to be amended in order to make it workable: how to treat patients who cannot communicate meaningfully; the definitions of "severe suffering" and "serious bodily harm"; the definition of "treatment"; and the role and purpose of rights advisers. We are pleased to note that the proposed Health Care Consent Act does deal, in our view, appropriately and effectively with each of these concerns.
We intend to accomplish three things in the brief time we have today. First, we want to put the existing Consent to Treatment Act and the college's concerns about it into a historical context; second, we want to give a specific example of how the existing act compromises patients' care; third, we will indicate how we think the proposed Health Care Consent Act solves most of the problems created by the existing Consent to Treatment Act.
Dr Helen Gordon: The college applauds and strongly supports the proposed amendments, because we think they're long overdue, we think they're clear and we think they are in the best interests of patients. The mandate of the College of Physicians and Surgeons is to protect the public and guide the medical profession in Ontario. That task, made much more difficult by the current act, is made much easier by the proposed amendments.
We think the amendments restore the important and necessary balance between health care providers and patients and the balance between the consumer's right to choose and the practitioner's ability to provide good quality of care.
It has been more than three and a half years since this college first expressed serious concerns about the Consent to Treatment Act. In February 1992 senior college representatives appeared before the standing committee on administration of justice. At that time, the college noted that the Minister of Health of the day, Frances Lankin, said that she hoped that "common sense would prevail in applying the legislation." The college was of the view that "common sense cannot apply in the absence of clear legislative direction."
So confused and confusing is the current act that the college spoke out forcefully and clearly several times during the past three and a half years. College officials appeared and spoke at a second round of public hearings before the justice committee in August 1992. They noted that while the government of the day had made significant amendments to its own legislation since the first round of public hearings, the consent and advocacy acts were still not ready to enter the real world of Ontario's front-line health care system. A month later, in September 1992, the college stated publicly that the consent-to-treatment legislation was so seriously flawed that it could endanger members of the public in need of medical care.
In short, the bureaucratic complexities of the consent-to-treatment legislation forced health care workers to observe technical legal compliance above all else. It ties up the interests of vulnerable and incapable people in legalistic red tape and it prevents health care practitioners from acting in accordance with the judgement that they are trained to deliver.
Dr Bernard Hammond: The college, long before the Consent to Treatment Act became law, instructed its members regarding informed consent by stating: "The patient has the right to accept or reject any investigative procedure or treatment offered. This right can only be exercised meaningfully if the patient has been given a fair explanation of what is proposed to be done and what the potential benefits and risks are."
It's worth noting that this standard is supported by the common law, which the Consent to Treatment Act was supposed to codify, protect and enhance.
Let us give you a specific example of why the Consent to Treatment Act doesn't work properly. We used this example at a news conference in June 1994 to explain to the public through the media what the college's objections to the Consent to Treatment Act were.
We will also show the committee, using the same example, why we believe the proposed amendments will solve the problems we will describe and lead to better patient care and fewer delays, delays which are costly in both financial and human terms.
We have warned since the outset that the Consent to Treatment Act does not deal in a realistic way with patients who are incapable of giving consent, but who cannot interact in a meaningful way because they are confused, demented or semiconscious. This is a significant percentage of persons who are incapable.
We developed a scenario involving an elderly man -- call him Mr Jones -- who, having been unable to urinate for several hours and clearly in increasing discomfort, is brought to the emergency unit of a hospital by his middle-aged daughter. Because the doctor cannot understand Mr Jones's response when he was asked for his consent to perform a catheterization to relieve his problem, a complicated, confusing and time-consuming process falls into place under consent to treatment.
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Dr Gordon: First of all, the doctor tells the incoherent Mr Jones that he finds him incapable of consenting, then he reads Mr Jones the government-supplied statement outlining his right to appeal the finding of incapacity, and then he tells him that a family member or the patient's personal substitute must be called on to make the decision for him. The doctor also informs Mr Jones that he is entitled to meet a government-appointed rights adviser who will explain his rights. Then the doctor gives the patient a printed notice provided by the government which outlines the rights the doctor just read to Mr Jones.
The doctor then asks Mr Jones if he wants to see a rights adviser and, since Mr Jones's response to this question is no more intelligible than his response to the earlier question about treatment, the doctor calls on a rights adviser just to be on the safe side. The rights adviser arrives at the hospital, perhaps hours later, reads Mr Jones his rights and finds Mr Jones no more coherent than did the doctor.
During this delay the doctor is not permitted to treat Mr Jones or to offer him relief unless he consents or unless he experiences what the Consent to Treatment Act calls "severe suffering" or unless he's at risk of suffering what the act calls "serious bodily harm."
Throughout this whole process Mr Jones's daughter, who brought her father to the hospital in the first place, is finding it increasingly difficult to watch her father suffer and pleads with the doctor simply to do the catheterization. The doctor is unwilling to agree with her request because of his uncertainty as to Mr Jones's capacity and the possibility of facing a professional misconduct charge by the college if he does.
Once the rights adviser has left, the doctor can ask Mr Jones's daughter if her father has appointed an attorney for personal care under the Substitute Decisions Act. If he has, that person can now be called in to make the decision regarding the treatment on Mr Jones's behalf. If Mr Jones has not appointed such a person, and if his wife or partner is not present and his daughter has no reason to believe that his wife or partner would be available, then and only then can Mr Jones's daughter give consent for the treatment of her elderly father.
I'm sure members of the committee will agree that this is a fairly horrific scenario. We can assure you that it's a very realistic and not uncommon one in emergency rooms across the province.
Dr Hammond: Under the proposed Health Care Consent Act, here is how the Mr Jones scenario would unfold: He would be brought into the hospital by his daughter, examined by the doctor and determined that he was suffering from acute urinary retention. The doctor would then tell Mr Jones that the treatment would involve catheterization and would ask Mr Jones for his consent. If Mr Jones's response were incoherent or unintelligible, the doctor could then turn to the daughter who brought her father in and seek her consent on his behalf. In the alternative, the doctor could, under the amended act, decide that Mr Jones appeared to be suffering and could catheterize him and relieve his pain.
We submit to you that this is the desired outcome for the patient and that hours of delay coupled with miles of bureaucratic red tape and suffering is not.
On behalf of the medical profession in Ontario and the public, the College of Physicians and Surgeons welcomes these changes. We think the new act deals with the issue of informed consent in a practical and realistic way while at the same time maintaining the right of patients to make informed choices about their own medical care.
The Chair: We'll now have questions, starting with the third party.
Mrs Marion Boyd (London Centre): You've presented a very interesting scenario. However, I'm surprised in the first example you give where in the one paragraph you talk about the doctor not being able to do anything unless the patient is suffering and the daughter being worried about the patient suffering. What was the problem in treating that as an emergency under the current act?
That is really the crux of the matter, because most of the examples that have been brought forward by the OMA and by the college -- from the point of view of many observers, there is great puzzlement as to why the procedure could not go forward under an emergency because of the suffering of the patient. This is an example that strikes me as being very similar.
I'm just curious as to why you feel that would not be possible. It is in the second scenario, when you talk about the current act. I'm just totally puzzled and have been from the beginning why there is so much angst under those circumstances. If this person's bladder has been full for some time, we all have reason to know that's extreme suffering.
Dr Dixon: I think this is really the issue. The problem is the determination of the meaning of words and that they are not defined. The proposed act makes it very clear that it's "apparent suffering," and we think that's a substantial improvement. "Serious suffering" is in the eyes of either the beholder or the person experiencing the suffering and it's not clear which one should base the assessment on. We think this clarification is very welcomed and will alleviate the problem that the scenario proposed.
Mrs Boyd: If there were ever any dispute in the long run, it would be the same kind of judgement call that a physician would have to make in either case. If it's an apparent suffering and someone then got angry about what happened -- for example, in the course of this, if the catheter punctures the side of the urethra and complications arise, the physician's in the same kind of situation they would be in the original case. I'm not saying "apparent suffering" doesn't ease some of those concerns; I think it is better wording.
I'm just saying that I think there has been a great deal of fearmongering around what the other one did that really was not necessary in terms of the judgement that physicians would do. I think there are many people in the province who, since this act came into place, have really not experienced the kind of angst that has kept being presented. We have not seen a whole lot of cases brought forward, that have been able to be verified, where in fact bad treatment resulted as a result of the act. I think that's kind of a confusing issue.
Given that the government has decided to take away the rights advisers, in your second scenario, under the new act do you not think that Mr Jones should be told by the physician when he is unable to answer his question that the physician considers him to be incapable and therefore is going to turn to his next of kin, his daughter who is available, to get her permission?
Dr Dixon: I think it all depends on the circumstance, and this is why I think it's so important to have some discretion on the part of the caregiver. If the patient is significantly incapacitated and unable to understand anything of significance, it's not very helpful to enter into an attempted dialogue by beginning to tell the patient that they're incapable and that you have to discuss this with the substitute. On the other hand, if the patient is only marginally incapable, and perhaps only incapable in respect to the treatment proposed, then of course it's appropriate to enter into a discussion and say that you have to share the care decision with the substitute and, "If you have any problem with that, there are remedies."
The question is, should you make it a requirement on every occasion when in many circumstances it would be frankly ludicrous to enter into a discussion with a clearly incapable person who hasn't got the slightest hope of understanding what you're talking about? To tell them they're incapable and then to read them a long printed form and then give them a signed copy of it is just absurd.
There are circumstances where it's clearly in the interest of the patient to be told by their caregiver that there are circumstances that can be looked at through other routes, such as seeking a review of the decision of incapacity, if they are unhappy, but if they're content with their family member giving consent, why raise the issue? If there's no issue on the part of the incapable person that they're unhappy with the decision of the substitute giving treatment decisions, why raise it?
But I would certainly agree that if the patient is capable of understanding and is expressing any evidence of dissatisfaction with the involvement of the substitute, then the physician or the caregiver has an obligation to discuss the options of appeal to the consent board with the patient. We will certainly advise doctors of that.
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Mrs Helen Johns (Huron): Thank you very much for your presentation. We appreciate it and we will certainly be looking at it a number of times over the next two or three weeks.
We really need to explore more closely what the health practitioner is going to do in the case where the person is incapable, at a specific moment, of making a decision. Yesterday both the minister and Mrs Caplan, and I believe Mrs Boyd also, talked about we have to ensure that the person gets the best advice, has the best information so that he knows (a) that he's being considered incompetent or (b) that the process is going forward.
We've talked a lot about legislating some way of ensuring the people have advice. We'd like to hear, if we didn't legislate, what you would be prepared to do from the standpoint of guidelines ensuring that the people who fall under your college would be following a process to ensure that the people of Ontario are getting the best rights and therefore the best access to quality health care.
Dr Gordon: I can understand that concern very clearly. We feel it is incumbent upon us to assist our professional members to know what the legislation entails and to understand the patient's rights. We have had a booklet of informed consent which touches on this published long before this legislation came in. We put together, with the OMA, this handbook which we sent out to all our members at considerable cost, I have to say, to try and explain the legislation that came into effect last April. We do feel it is important our members understand that the patient has a right to a second opinion if he is being called incapable.
The rights adviser on incapacity, as you know, is not going to advise the patient on treatment; it's only on whether or not they are capable of making a decision. Certainly there are times when the treating physician should be prepared to say: "I don't think you're capable of making a decision on this issue and I'm going to have to ask someone else to help you make that decision, but if you really disagree with that decision, you have the right to talk to someone." That would be appropriate.
There will be other times when it is clearly inappropriate for the physician to try and explain that to the person involved, who really is more concerned about what the treatment's going to be than whether or not they can decide to have it.
It seems to me it puts us right back where we are if we have it legislated that they must read rights. Have you ever read this to anybody? It's something you should all experience, actually. If you have to read them their rights and sign it and give it to them when you feel they really aren't capable of deciding whether they should have some little bit of treatment, it seems very hard to do.
Mrs Johns: Will the CPSO be prepared then to put in guidelines that would lead a professional to have to say specific things, doctors, let's say, in your particular case?
Dr Gordon: We certainly are prepared to produce very firm and clear guidelines for our members. I'm not quite sure what you mean by "would have to in every case" because as I've tried to point out, it may not have any application in some cases.
Mr Frank Klees (York-Mackenzie): I'd like to not belabour this point but certainly follow up on it for further clarification. We all understand that the scenario you've described to us is cumbersome and obviously unworkable. I don't think any of us have a problem with not requiring you to read someone their rights and get into a long-drawn-out bureaucratic exercise.
What I'd like to pursue is the issue of disclosure, and I think you agree there should be disclosure to people who are about to receive a medical procedure. Would you have any problem if the law at least required that a form of disclosure take place, leaving the details of how that is done to the medical practitioner and allowing your college to develop some guidelines around this issue as to the most appropriate way of disclosure?
My concern is that we're here representing the people of this province who look to us to ensure that their rights are protected, to ensure that they have full disclosure in this matter, and perhaps it would be appropriate for legislation to at least require that the caregiver provide disclosure, leaving the details to you. I'd like to get your comments on that.
The Chair: Unfortunately, Mr Klees, there is not ample time to get the answer. We're going to have to move to the opposition.
Mrs Elinor Caplan (Oriole): It is a good question and I'm going to follow on that, so perhaps you could answer us both. I appreciate your brief, and I spoke in the House about my own concerns of the bureaucratic nature of the reading, the Mirandizing; absolutely ridiculous. But I am concerned that this legislation removes any obligation on an evaluator, which could be anyone under the Regulated Health Professions Act, anyone under the Mental Health Act or anyone under the long-term-care legislation, to let someone know when there's been a finding of incapacity. For those people who are so severely disabled, it's obvious we would all say, "Well, that's understandable," but there's a very fine line between those who are severely and continuously incapable and those who perhaps go in and out of incapacity. Those are the difficult ones.
My question would be, we understand that all the doctors and others in the province have a responsibility to seek consent from someone who is capable. That's understood. I'd like to know what procedures, standards, protocols you have in place now for the determination of, has someone given consent appropriately? That's one. On the other side, where someone is deemed incapable, do you believe that if they have not informed them of their incapacity and told them of their right to appeal, that should be considered professional misconduct?
Dr Gordon: Absolutely not. I think we should make it very clear that I do not feel this should be done by regulation. I think it can be done very well by guidelines. I would like to make it very clear, perhaps referring to Mr Klees, that when you talk about disclosure, I assume this is a legal term; it's not something that's used very much in the medical profession. We are not disclosing or talking about the treatment; we are talking about whether or not the person is capable of consenting to the treatment. Whether that responsibility should lie with the practitioner, whether it should lie with the substitute decision-maker, is going to vary from place to place.
It needs to have the latitude of being outside regulations. We can produce very strong guidelines for our members on this topic. We produced very strong guidelines for them out of the last legislation, which was very difficult to do, I think we could do it again with a much more useful piece of legislation from a medical care point of view.
Mrs Caplan: The concern I have is that as self-regulating professions, unless the government is clear about how strongly it feels that people have a right to be informed when they are deemed incapable and that there is an obligation they be given information about their right to appeal -- my question is this: Unless the government says it clearly -- they've said it clearly under the Mental Health Act. Under the Mental Health Act, if someone is deemed incapable, by law they must be told of their right to appeal and they must also be told and handed the form of their incapacity. Public guardian and trustee the same thing; under this legislation, there is an obligation that the public guardian and trustee's office must inform someone of the guardianship and give them the forms to appeal.
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Why shouldn't that be for anyone who can make a finding of incapacity? What's different about providers who are not under the Mental Health Act or are not subject to the public guardian and trustee? Why are other providers different?
Dr Dixon: I think you've already stated that in circumstances when the patient is so incapable, it makes no sense. No one would disagree that there's no sense whatsoever in trying to communicate the right to an individual who is completely incapable and the law has already provided for a substitute to act on his behalf. On the other end of the spectrum are the patients who are marginally incapable but have a very stable relationship with their family and are giving every evidence that they are content with having their family, which is legally entitled and required to act on their behalf.
Why then intrude in this relationship and say, "First of all, as a caregiver, I have to tell you that you are incapable, and secondly, that you have the right to challenge that finding of incapacity," if there is no issue? If there is an issue, then I completely agree that there should be a responsibility on the caregiver to make that right known to the patient. But surely there has to be some exercise of professional discretion in this area. The doctor-patient relationship is founded on trust. The present act tries to get between the caregiver and the patient and the family. I think we have to give some recognition to the professional responsibility of the caregiver to act responsibly and appropriately in situations where it's indicated.
The Chair: On that note, doctors, I thank you for attending and for your presentation. Our time is up and we will move to the next witness.
LINDA BOHNEN
The Chair: Our next witness is Ms Bohnen from the law firm of Thomson Miller.
Mr Tony Clement (Brampton South): The other way around.
The Chair: Miller Thomson, sorry. You're right. It used to be Thomson. Welcome. We have one half-hour for your presentation, including all questions.
Ms Linda Bohnen: My name is Linda Bohnen. I'm a health law lawyer in Toronto. I was executive director of the Task Force on the Implementation of Midwifery in Ontario and a member of the Health Professions Legislation Review. For several years I worked at the Ministry of Health, developing and drafting the Regulated Health Professions Act. In my private practice I now give advice to many colleges, professional associations, practitioners and hospitals. I'm not here to represent any of them but rather to give you my own views about Bill 19, focusing on the proposed Health Care Consent Act.
The Health Care Consent Act is a considerable improvement over the Consent to Treatment Act. My experience with the Consent to Treatment Act includes helping to write a detailed manual about it for hospitals, and I have given seminars about it to health professionals. I can tell you from personal experience that the Consent to Treatment Act has been very difficult to teach. Many health practitioners are simply bewildered by it. In my view, the fact that it is so complex has been a very real impediment to its being implemented.
The drafters of the Health Care Consent Act should be congratulated for writing a clearer and simpler act. It's evident that Ministry of Health staff have listened to the criticisms of the Consent to Treatment Act, and I think they've tried very hard to balance competing points of view.
Now, perfection is an impossibility, and it's quite possible that the Health Care Consent Act is as good a piece of legislation in this area as it's possible to achieve. But there are two features of the act that I would like to comment on.
The first is consent for what I call "non-treatment." As I'm sure you know, one of the primary purposes of the consent act is to fill in a gap in the common law. The common law does not give any authority for next of kin to act as substitute decision-makers for individuals, except for children, where they are incapable of making their own treatment decisions. In practice and of necessity, physicians and other health professionals do turn to family members for consent decisions, but this practice has had no official legal sanction prior to the Consent to Treatment Act. That act remedied this by providing a prioritized list or hierarchy of substitute decision-makers, and this list, with some drafting improvements, has been carried over into the Health Care Consent Act. Under both acts, a substitute decision-maker does have legal authority to make treatment decisions for an incapable person.
However, the authority given to substitute decision-makers only extends to things covered by the word "treatment." Those acts except some things from the definition of treatment. This was done primarily in order to make the obligations in the act inapplicable to commonplace, low-risk acts and procedures. In the Health Care Consent Act, this includes treatments that, in the circumstances, pose little or no risk of harm. At first blush, this seems to be extremely sensible. After all, if a treatment poses little or no risk of harm, then a person would probably have no concerns about the treatment and would readily consent to it.
But there will be a real problem if an incapable person does refuse consent. A capable person is completely entitled to refuse consent to a treatment, no matter how low-risk or no-risk it may be. If the health practitioner ignores the person's refusal and performs the treatment anyway, he or she will be committing a battery. But what if an incapable person refuses consent to a low-risk or no-risk treatment? Because it is not covered by the definition of treatment in the act, the act doesn't apply and a substitute decision-maker has no legal authority to give consent on the incapable person's behalf. I'd like to give you an example.
My example is that of a Pap test, which is part of a routine pelvic examination. It's a very low-risk procedure with proven value in detecting cervical cancer at a very early stage. Yet, a pelvic examination is an invasion of privacy and an assault on one's dignity, however small an assault that may be. I can certainly envisage an incapable woman objecting to a pelvic examination. Because of the exception in the definition of treatment for low-risk treatments, there will be no way of obtaining a valid consent to a pelvic examination except for going to court for the appointment of a guardian under the Substitute Decisions Act. Yet, this is precisely the problem the legislation was intended to overcome.
The Health Care Consent Act does try to overcome this problem in relation to low-risk or no-risk treatments in care facilities. I think that's the primary motivation for part IV of the Health Care Consent Act. Under part IV, you can opt into the act in connection with personal assistance plans, but I think there's a simpler solution and one which could apply everywhere: in hospitals, care facilities, practitioners' offices, patients' homes.
The solution I suggest is to make it possible to opt into the act for acts and procedures excepted from treatment, such as treatments that have little or no risk. For example, suppose that a woman assessed as incapable does object to a pelvic examination and a Pap test. Since these are low-risk procedures, the act does not automatically apply to them. A provision could be added to the act to make it apply on an optional basis. The physician would inform the woman that she cannot make her own treatment decisions because she is incapable, and that consent will be requested or perhaps has been obtained from her substitute decision-maker. The woman would also be told of her right to object to the finding of incapacity to the Consent and Capacity Review Board. The examination would be postponed for a time period set out in the act to give her an opportunity to appeal to the board. If the woman did not object to the examination or to being found to be incapable, then the physician would simply proceed with the examination and a very valuable form of preventive health care would be carried out.
I think this solution provides a balance between protecting a woman's right to autonomy and not throwing up unreasonable obstacles to low-risk health care. If substitute decision-makers can be authorized to make decisions about treatments with risks, then surely they should be permitted to make decisions about treatments without any risks. This solution will safeguard the practitioner too, because if the patient objects and there is no consent, performing the examination would be a battery. The practitioner could be sued or a complaint could be made about him or her to their college. With the addition of this provision, it might even be possible to eliminate part IV of the Health Care Consent Act, since many of the activities falling within the definition of "personal assistance activities" are in fact treatments that have very few or no risks.
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I'd now like to speak to rights notification, an issue that I know concerns you greatly.
One of the significant differences between the Consent to Treatment Act and the Health Care Consent Act, of course, is that provisions requiring practitioners to inform patients that they are incapable and that they may appeal the finding have been removed. Many health professionals have objected to the provisions in the Consent to Treatment Act. I don't believe that they have objected because they don't want patients to be aware of their rights; I think it's because they have found it too difficult to figure out when notification had to be given, and because giving the notification often seems like a useless formality or hurtful to the patient.
I support the removal of the provisions as they existed in the Consent to Treatment Act because mandatory provisions are not the most effective way of getting rights information into the hands of patients when they need the information. I start with the observation that most people who are ill want to be treated for their illness. The legislation makes provision for people to express wishes about future health care through such devices as living wills and advance directives. I think it's reasonable to think that a person who does not want a particular kind of treatment or any kind of treatment at all will express a wish to this effect. Based on these observations, surely it's reasonable to permit health professionals to exercise judgement about notifying incapable patients. It could be expected that they would do so if the patient objected to the treatment or to having their decisions made by a substitute decision-maker.
I'm aware of the fact that during the second reading debate of the bill, Mrs Caplan indicated that her party would be proposing an amendment to require the colleges to issue practice guidelines or standards on rights notification. This could take the form of an amendment to the Regulated Health Professions Act or the Health Care Consent Act. I'm going to suggest that an amendment of this type is not necessary and not desirable.
It's not necessary because a law does not need to be passed to induce health practitioners to give rights notification when it is called for. Bear in mind that in some professions it will almost never be necessary because of the nature of their work and their clientele. Members of other professions, such as physicians, regularly make judgements about capacity. My experience with the colleges suggests that they will discuss rights notification issues with their members when they provide information to them about the Health Care Consent Act generally.
In my view, a statutory requirement is too heavy-handed an approach, one more likely to raise hackles with colleges and health professionals than to exert a positive influence on their behaviour. After all, you either believe in self-governance or you don't. Every college has already defined it as professional misconduct for a professional to treat a patient without obtaining an informed consent.
Secondly, professional associations also play an important role in standard-setting and in educating professionals about developments in the law.
Thirdly, I know from personal experience that the Ontario Hospital Association and individual hospitals have expended considerable resources on developing ways to ensure that hospital staff implement changes in consent law.
If you still believe that the government needs a way of requiring a college to take action, then I think that means already exists. The Minister of Health has the power, under section 5 of the Regulated Health Professions Act, to require a college to take action that the minister considers appropriate. In addition, if a college refuses to make a regulation after being requested to do so, the cabinet can make the regulation in its stead. This has been very rarely exercised, but the power does exist.
In conclusion, I'd like you to consider that for a consent act to be effective, the practitioners who will be applying it must buy into it. That can be extremely frustrating I think for both legislators and people like me who sometimes draft laws because we think that, darn it, if we write it and if we pass it, they ought to apply it. But life is more complicated than that, and buy-in is necessary for them to invest the necessary time and effort to change their habits and practices.
Eventually the Health Care Consent Act will become ingrained, new habits will form and the culture of health care will change. The Health Care Consent Act, in my view, is more likely than the Consent to Treatment Act to achieve positive change in the culture of health care, for reasons I've already given. But change takes time, and so my final suggestion is to give the Health Care Consent Act sufficient time to work and, please, let's not have a third consent act for at least a few years.
Thank you for your attention. I'd be happy to answer any questions you have.
Mr David Tilson (Dufferin-Peel): I must say I'm tempted to pass when you say it's as good a piece of legislation as one could get, but I do have one concern -- actually, I would have liked to ask it of the College of Physicians and Surgeons -- and that has to do with the rules for determining capacity and, in your experience as a solicitor and also working for the ministry, if you could give us your comments. I guess there are different ways of doing it, and I think you may have touched on it in your comments talking about the powers of cabinet. Obviously, one can set up these rules in regulation, one can ask or hope that the College of Physicians and Surgeons will do it, or you can do something in the act. Can you tell us what your thoughts are on that issue?
Ms Bohnen: I think when you consider the rules or guidelines for determining capacity, you have to start from the point that in this legislation, capacity is specific to a particular treatment at a particular time. It's not like the global concept of incapacity that lends itself to uniform criteria such as we have under the Substitute Decisions Act. We're talking about whether Jane Doe at a particular moment is capable of giving an informed consent to a particular treatment. So it's more of a floating concept.
There were very detailed regulations outlining the intellectual process, if I can put it like that, under the Consent to Treatment Act. I had a problem with that because I think it differed from the concept that was embedded in the act itself. My personal preference would be that we not try to spell out in detail a process like that, but have it clearly in the law, as it is, that for a consent to be valid, it's got to be obtained from a capable person, and only the capable person can give the informed consent. Given the possibility of complaints to the college and civil actions for damages against health professionals, I think that physicians anyway have sufficient motivation to make sure that they do it right.
Mr Tilson: I guess, as you say, the real difficulty is that there are different people, whether they be children or whether they be seniors or people of different stages or different health problems.
Ms Bohnen: The health problems change, the age and stage of life change, and the treatments change. The measure in capacity to consent to something quite simple is very different from assessing capacity to determine, for example, some complicated form of treatment for cancer, whether the person has the capacity to give an informed consent about that. It's extremely variable.
Mr Tilson: In short, you support the initiative of --
Ms Bohnen: Yes, I support the initiatives, and I think that although we may be uncomfortable with it, we don't have much choice other than to entrust regulated health professionals to use their best judgement in making these assessments.
Mrs Caplan: I like debating with you, Linda.
Ms Bohnen: Oh, oh.
Mrs Caplan: I agree with you that there are a lot of improvements in this legislation. However, I have a couple of concerns, and that is the recent case that we just heard in Alberta where a woman was sterilized against her will. As I read this bill, it is possible in Ontario. No one would have to tell her she was deemed incapable; no one would have to tell her where she could apply. She would have been incapable and that would be done, and this bill would permit that.
The second point I would make, and this is in the form of a question, is that we've heard from the College of Physicians and Surgeons that they believe it is professional misconduct if you do a procedure without consent from a capable person, but we just heard that they do not believe it is misconduct if you do not inform someone that you have found them incapable and have not informed them of their right to appeal, and done the procedure.
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Ms Bohnen: On the sterilization point, I'll just remind you that the act does not apply to sterilization that is not medically necessary for the protection of the person's health, because I think there is an appreciation that sterilization is a particularly sensitive and difficult issue.
With respect, though, to the broader point, what we all want to do is make sure that when it is appropriate, a patient who has been found to be incapable is told of that finding and is told of the right to challenge it. The only issue is, how are we going to achieve it?
Frankly, I'm dubious that simply adding a provision to the RHPA or the Health Care Consent Act saying to the colleges, "Thou shalt issue practice guidelines," or make a standard requiring physicians or whoever, requiring health professionals, to give this information in appropriate cases -- frankly, I don't know if it's worth the ink or the paper it's written on. What we have to do is encourage the colleges, encourage health professionals to use their heads, to remember that they are there to act in the best interests of the patients, and give them the education and the resources to do just that in situations where they and everyone else would agree it ought to be done.
Mrs Caplan: Linda, why is it appropriate under the Mental Health Act to require that a person be told that they have been deemed incapable and be told of their right to, I think it is, make a submission to the board or appeal to the board. Similarly, in the case of the public guardian and trustee, we are very comfortable saying to them, "You have to hand the person the form of incapacity and tell them of their right to appeal." Why in those two cases does that work, but a requirement or a request that the colleges set up similar procedures -- why do you think that should raise hackles? If medical practitioners, particularly psychiatrists and others, are already doing it under the Mental Health Act, why are only those people given that protection and those rights?
Ms Bohnen: I think that in relation to patients in the psychiatric system under the Mental Health Act, we do recognize that psychiatric illness and committal, involuntary committal, raises issues of particular sensitivity, and therefore we've traditionally dealt with them with greater protection for the civil liberties of individuals. In relation to guardianship orders and the public guardian and trustee's responsibilities, I think there are two differences. One, it's a government office. Secondly, a guardianship order has a much more pervasive effect over someone's life than a discrete decision that in relation to one treatment at one time, you are incapable.
I don't disagree with you at all that colleges ought to provide guidance to their members about this issue. Where I differ with you, though, is in whether writing a section in an act is the way to achieve that. I think we're fooling ourselves if we think that's going to achieve the result that we want.
Mr Rosario Marchese (Fort York): This is the same point I wanted to pursue, because I have some trouble with the view you're presenting. On the whole you say that the existing act was too onerous in terms of what it obliges doctors to do. On the other hand, you say no guidelines are necessary because you say that "Members of other professions, such as physicians, regularly make judgements about capacity."
From your point of view, it seems that doctors will always act wisely and will do the right thing, and I appreciate that and we think that's the case most of time. My concern is, how do you balance the rights, of course, of the profession with the rights of individuals? What you're saying, if I understand you correctly, is that the rights of the individual are protected because the medical profession will always act on behalf of the patient because that's the nature of the profession.
Ms Bohnen: Firstly, there were two problems with the Consent to Treatment Act. One of them is that the rights notification provisions were too absolute and unrefined. The other problem was, frankly, speaking as a lawyer who practises health law, they were too hard to figure out most of the time. It was very, very complicated, so we needed to simplify it. I agree with you 100% that there need to be guidelines and that health professionals need to be coached, educated and encouraged to provide rights notification and information. My only quarrel is that I don't think writing a section in this legislation is the way to produce that result. I think there are better, more effective ways of achieving that result.
Mr Marchese: To be clear, on the issue of guidelines, you're saying there should be, or there shouldn't be, or there should be guidelines but not written into the act?
Ms Bohnen: I think there should be guidelines, that colleges should provide them, and that neither the guidelines nor the legal requirement to do it needs to be written into the act.
Mr Marchese: Right, because the act obviously doesn't say, "We shall educate the profession" in some way or other. What you're saying is the profession should do it and we should encourage them to do that, but there's no obligation, no control, no regulation.
Ms Bohnen: No. I also pointed out that if they fail to do so, the minister has powers under the Regulated Health Professions Act to require the college to do so, so that if the College of Physicians and Surgeons, or any other college for whom the issue is relevant -- it's not relevant for some. Dental technologists don't even have any contact with patients. But if they refuse to do so, then the minister can access the powers the minister already has.
Mr Marchese: What we should do then is wait for a period of time, however long that is, wait for something that happens that will indicate to the government that perhaps we have gone wrong and we should do something, and then see what happens, that sort of thing?
Ms Bohnen: You could do that, but you could also do what Frances Lankin did as Minister of Health in relation to patient relations program vis-à-vis sexual abuse. She wrote to each college -- she had no legal authority at the time to do so, except in the RHPA -- and said: "I would like you to do this. It's in the public interest. Would you please develop a plan and let me know what your plan is." That worked.
I know my time is up. I'd just make a plea: Don't forget the issue of making it possible to use the act for stuff that's not a treatment. There's an inquest going on right now that's relevant to that in this city. Thank you.
The Chair: Thank you, Ms Bohnen.
BRENDA SINGER
The Chair: Our next witness is Ms Singer. The committee should have received the written submission dated February 6, 1996. You may proceed.
Mrs Brenda Singer: Thank you. I'm here today as the mother of a severely disabled young man whose life was profoundly affected by Bills 108 and 109. My son Brian now lives at Southwestern Regional Centre in Blenheim and receives a controversial treatment called faradic stimulation, or contingent electric shock, which is used as aversive conditioning to prevent him from severely beating himself. This treatment was prohibited in Bills 108 and 109, and my primary purpose for coming here today is to commend you for inclusion of electric shock as a legitimate and necessary treatment. I believe that Brian's story will convince you that you have made a wise decision. The issue became a life-and-death issue for my son, and I feel it is important to give you some background. If you'd like to see who I'm talking about, if you turn to appendix A you can see what my son Brian looks like. I'll be showing you a video later.
When others with different views who are not directly involved in the issue attempt to reverse your decision, you will have the facts from one of the only two families in the province affected by this issue and by this legislation.
I'm a mom and I've come here really to talk to you from my heart. As I have faced the systems, I have had to become knowledgeable, and that's why I've sort of accumulated some documentation for you to read if in these proceedings you have the opportunity to do so.
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Brian is a 27-year-old developmentally disabled young man with a 20-year history of self-injurious behaviour. He has been tested as profoundly disabled. He functions at the level of a two-year-old with no verbal skills. He demonstrates autistic behaviour. He is able to dress himself with assistance, eat independently, ride a tricycle and swim. He was born in Montreal in 1968. He's my eldest son and, although we were not aware of it at the time, he had trouble breathing for the first six minutes of his life.
He went to a school in Montreal, where we come from, for developmentally handicapped children and lived at home. Brian's self-injurious behaviour began when he was approximately seven years old. In his early years he was assessed at various hospitals and received a range of behavioural approaches and all kinds of medication trials. The only successful treatment at that time, when he was very, very young, was the use of two elbow splints which were designed by a physiotherapist friend of mine. He wore them to straighten his elbows so that he couldn't bend his elbows and hit his face.
Brian lived at home and attended a school in Montreal until he was 10 years old. In 1978 our family moved to Ottawa and our life together was torn apart. Brian went to a school for developmentally disabled children, from which he was sent home after only one day because they couldn't manage his behaviour. We were told that he was our responsibility, as there was no school that could accommodate his needs. I was at home at that time with his infant sister and younger brother.
The Ottawa school board convened a placement meeting and told us that our only alternative at the time was for respite care during that summer at Rideau Regional Centre. It was really, indeed, with broken hearts that we drove our son to Rideau for the summer, hoping to find an alternative. A few months later we found a group home in Ottawa where people who lived there could go to a day program. He lived in the setting for a year. However, the staff wasn't able to handle his self-injury and one time he spent a week at the Children's Hospital in Ottawa because he was put in a time-out room and he was in the hospital with a black-and-blue face. Finally, the group home staff concluded that he required one-to-one staff ratio. They couldn't deal with his needs and he returned to Rideau Regional Centre as there were no other alternatives for our family.
In September 1978 -- Brian was then 10 years old -- he was admitted to Rideau, where he became a resident for the next seven years. During those seven years he would have periods of extreme self-injurious behaviour where being in a straitjacket and a helmet became routine, and there would be intervening periods of some stable behaviour. Many different types of medication were tried during his stay at Rideau. I've listed them all here; I won't go into them. Many of the medications were entirely experimental, but we willingly agreed to these medications, hoping to find relief for our son.
In 1978, while Brian was a resident at Rideau, our family moved to Toronto but continued to visit him regularly. We advocated on his behalf to find a suitable community setting for him to be closer to our home. In 1982, he was admitted to the Lawson Residence operated by the Metropolitan Toronto Association for Community Living. However, unfortunately, on the first day we received a call from their staff saying that they couldn't handle Brian, to please remove him immediately. He did not react well to change, was biting staff and other residents, and was considered not behaviourally compliant. We brought him back to Rideau after the failed community experience.
The staff of Rideau became increasingly concerned about their inability and lack of expertise to cope with Brian and recommended Dr Barrera's program at Southwestern Regional Centre. Brian was crying constantly and was extremely self-injurious. Brian was actually in a straitjacket for the last 18 months of his residency at Rideau. At one point there, a staff doctor recommended that we amputate Brian's ears as a solution. It wasn't their lack of care but their lack of knowledge that became the problem. So his transfer to Southwestern Regional Centre, to our family and to Brian, was a lifesaving measure.
Brian was admitted to Southwestern Regional in October 1986, when he was 18 years old. When Brian arrived at Southwestern, as I mentioned, he was wearing the straitjacket to keep him from beating himself; he was also wearing a football helmet to prevent him from pounding his ears with his knees. He arrived at Southwestern with a cracked bone in his arm despite all this apparatus that he was wrapped in and the heavy doses of medication. Also, his fingers were becoming atrophied because they weren't used for 18 months.
At this point it is essential, from my perspective, for you to see what Brian was like when he arrived at Southwestern and how, within a matter of hours, he was weaned from the straitjacket and helmet and began to regain his life. I have to tell you, and you can understand, that for me as a mother it's absolutely heart-wrenching for me to listen to and watch this footage, but I think it's more important, and I must put aside my feelings for the moment, so that you can develop some understanding of what the issue is.
It's very brief; this section of tape is no more than five minutes. A lot of people talk about faradic stimulation and don't understand exactly what a lifesaving measure it is. What you're going to see now is Brian for the first time in 18 months having the straitjacket taken away from him. This is information that we got from the ward. We were entirely aware of what they were doing. We sort of saw it all. My husband this past weekend just made a little synopsis so you'd have an idea, because in the abstract it's very hard to talk about something so difficult.
This is the very first day in 1986, his very, very first treatment, where he's being exposed to faradic stimulation. He's screaming because he was comforted by the straitjacket and the helmet to prevent him from hurting himself, and he doesn't want to give them up because he's afraid he'll hurt himself. That's why he's crying.
This shows how difficult it was for him to eat before he got the treatment, because they had to take him out of the straitjacket, lift up the helmet and try to feed him while he was trying to beat himself at the same time. So this predates the first application of faradic stimulation. It was very, very, very difficult for the staff, for him to be able to eat, which they wanted him to do, of course. Now Brian is getting used to being without the straitjacket. He would try to take his knees and hit his ears with his knees; that's what he's doing there. It gets better in a minute, I promise you.
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This is very lovely. Brian is riding a tricycle with his worker. It's an adult-sized tricycle and he's having a wonderful time and he's a happy boy here.
You're going to see another shot. The treatment in 1994 was taken away from Brian in anticipation of the legislation. You're going to see in a few minutes a terrible shot of what his ears looked like. But he remained that happy boy from 1986 until the treatment was taken away from him in 1994, and now he's okay again.
He is with his case manager now. He's back on treatment and he's feeding a shredding machine and he seems to be very happy. My son is extremely affectionate, as you'll soon see. This is a happy picture and this is how he is now.
Prior to the commencement of faradic stimulation, an exhaustive regime of behaviour techniques was used in order to ensure that this treatment was indeed a last-resort treatment. It's important for you to know that there is a very extensive approval and monitoring process of faradic stimulation that makes it a highly regulated treatment procedure in Ontario. There are strict standards and guidelines for its use.
I have provided some documentation in the packages, in appendices B and C. There is a photograph of the clinical equipment that's used and there's a lot of information about faradic stimulation itself and about all the various committee levels it needs to go through before someone is approved for this kind of treatment.
It's important for me to speak about this equipment for a few moments, because you're going to hear, I have no doubt, words during these proceedings -- I've just come at the beginning -- but you'll hear words such as "barbaric," "torture," or other emotional words to attempt to dissuade you over the course of these meetings.
I want you to know that I did a lot of research before our family made the decision for Brian to get this treatment. We visited Southwestern Regional Centre, we met with Dr Barrera and all his staff. Myself, my husband, my son who is sitting there all tried faradic stimulation. It doesn't have any more effect than it does for a person to walk across a carpet and receive some static.
Brian can accept pain, as you can see -- this created by his 500 to 900 hits to his face per day -- but for some reason there's an uncomfortable neurological sensation that he cannot tolerate, and that's why it works. We don't quite understand it, but it works. It isn't painful and it's certainly not painful like his self-inflicted injuries. It's not damaging or dangerous at all.
People get faradic stimulation confused with ECT and all kinds of other procedures. All it is is a very, very mild stimulus to the fatty tissue. It's given to a person's leg or to a person's arm, and it generates less current than a pacemaker. I'm sure you know people with pacemakers. There isn't any more risk than that. It doesn't have the side-effects, believe me, that Brian was affected with over the many, many years that he was subjected to all the drug trials.
You'll probably ask, why would parents subject themselves and why would they search so hard for this kind of treatment? First of all, we knew that the procedures were highly regulated and, secondly, we had to be convinced that no stone was left unturned and that this was truly the treatment of last resort.
You were able to see on the video how Brian's quality of life improved immediately. He could ride his tricycle. You saw him swimming. He attended programs. He was really cheerful and happy compared to the Brian prior to the treatment. In 1993 Brian was up to the point where he received only five shocks for the entire year. However, in 1993, in August, in anticipation of the ban on faradic stimulation, the Ministry of Community and Social Services instructed Southwestern to withdraw the treatment.
In January Brian had gone almost four months without the treatment, and by January he started to become self-injurious again. Just within four weeks, Brian went up to hitting himself 400 times a day, and very soon he was at the 1986 level and everything that had been gained was lost. He was beating his ears, using his knees again to hit his ears. His ears were bleeding internally and externally. I would call and there'd be blood over his pillow. Every single night they would be cleaning him up because of rubbing on his ears. You saw what they looked like. He refused to eat during that period and lost seven pounds in just two weeks. He was really at the brink of disaster.
I did what I could as a mother. I wrote, I talked, I pleaded with ministry personnel, and in April 1994 I met with the Minister of Community and Social Services, Mr Silipo, and told him about my son's plight and that Brian was right back to 1986 levels. Shortly after that, in May, in recognition of his regression and its possible consequences, because we were really afraid of brain damage and deafness, the ministry allowed the temporary return of faradic stimulation.
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To give you some insight into the efforts that were made at Southwestern Regional, I can tell you that every expert was called in. There were medication trials from Dr Hinton, a paediatric neurologist; Dr Ben Goldberg, consultant from the University of Western Ontario; a Dr Kastner; a Dr Herb Lovett of Boston; Dr Dana Henning of Pennsylvania. A full spectrum of new technologies was tried, including gentle teaching and even acupuncture over a course of months. Additionally, newer non-tranquillizing medications such as Buspar and naltrexone were used. In addition to chemical restraint, there was physical restraint, four-point bed restraint and wrist cuffs.
Currently you've seen how Brian functions, and I want you to know that monumental efforts have been made such as the ones I've cited on the part of the treatment staff at Southwestern, and the only technique that has afforded Brian a decent quality of life has been the use of faradic stimulation.
My husband and I, and Brian's brother, sister, grandparents and family who know and love him, want him to be happy and safe. Perhaps one day there will be a proven effective treatment that will assure him of the same quality of life that he has or even a better one. We want our son to be happy and we really thank you for what you've done with the legislation, because you've looked at the grey side of issues, and we certainly know that life is full of grey.
At this time there are only two families -- that's important for you to know -- in the entire province that were affected by that legislation, and we're happy that you've heard us. We're pleased that our new government has come to the determination that faradic stimulation may be used as a treatment.
We believe that it is our son's constitutional right to have this treatment as much as it is the right of any person who is physically ill to have any other intrusive treatment, such as chemotherapy, insulin treatment, surgery, anything that's just become part of life today that people need. We can't take this away unless there is another safety net there for Brian, and there wasn't a safety net when it was taken away in 1994.
I would like to thank you on behalf of myself and my family for the opportunity to bring this issue to you and, most importantly, thank you from Brian.
Mrs Caplan: We've met before, and I think, unfortunately, you've had to go through a situation where the only appeal was actually to the minister. While this legislation removes the absolute ban, my concern is that it doesn't have the accountability written into it that I think could be there without forcing you to go through all of what you've gone through. When we met, I had said, "Do you mean you can't go to any board?" and the question I have is, would you be comfortable --
Mrs Singer: No, I would not be comfortable. A person who is taking insulin doesn't have to go to a board; in fact there's no other medical procedure which is written into the legislation. Writing a medical procedure, a treatment, into the legislation in the first place is unprecedented.
I can understand, in terms of the concern about abuse, why it is written in now, but as long as it says "unless it is a treatment" -- we're talking about treatment. We're talking about a huge procedure. There are about five committees that the treatment staff has to go through before it's allowed to be used. Given all the ethnical steps and procedures, I think it's a very, very ethical process and the words, "unless it is a treatment," to me guarantee that it will be used safely, because if it's just used arbitrarily, then it's being abused and then it's not a treatment. "Used as a treatment," to me, is the protection.
Mrs Boyd: The argument has always been around whether it's a treatment or whether it's a behaviour modification technique, and that has always been the base issue on this matter. I think you will agree that the program at Southwestern has treated a great many more than two people and, in fact, this so-called treatment has not been effective for many of those people. In fact, one of the things we saw when this legislation was pending, they were instructed not to just remove it from people, but to do that work between 1982 and 1995 when the act came into effect. That, unfortunately, wasn't done and you folk suffered as a result.
But the issue is that in the experimentation that's been done, the research that's been done, very few people respond as positively as Brian has to this. The major concern has been, as with many other kinds of aversive treatment -- we've seen a recent situation with brain-injured children at Chedoke-McMaster, for example, where aversive behaviour modification treatment appears to be the norm, and the real concern always was to make sure that that intrusive and aversive behaviour modification technique was very much a last resort and very, very much the kind of thing that would only be used when the evidence was very clear that nothing else was going to have the effect. You should know that those in favour of this, other than the parents, certainly are in favour of it in a much broader context than what you're talking about in your particular individual case.
Mrs Singer: That hasn't been my experience, Mrs Boyd. The people I have talked to have been in similar situations to mine where it has been a lifesaving measure, and certainly every single step was taken. Brian arrived at Southwestern Regional Centre and was there for several months, even in the condition that he was in, before every single other procedure was tried, before this step was taken, so I have no --
Mrs Boyd: I think that's true, but you will admit that of the six people who were having the treatment at the time that it was removed several of them showed no change and did not have the dramatic reversion that your son displayed. So there clearly needs to be some way in which there can be some very clear way to ensure that this is an absolutely necessary medical treatment as opposed to an aversive behaviour modification technique.
Mrs Singer: I think there were -- Dr Goldberg sat on the committee, and in any treatment it doesn't work with everyone, but people are still allowed to try it. People have mastectomies and it's not always successful, but people still go through that radical procedure. People do die after breast cancer, but some people do survive.
I know, I'm familiar with all of the six people who had faradic stimulation around the same time as Brian. I'm at the ward all the time. I know these people, I know their families and I know that when it was deemed unsuccessful it was withdrawn. It was tried. Sometimes something is effective at one stage in a person's development and it's useful, and then it no longer becomes useful.
I think it does need to be highly regulated, I agree with you, but I think it's a grey issue; I think it can't be a black-and-white issue. The way it's put in the legislation right now is for the few people who need it. I would not like to see it tampered with; I want it to stay exactly the way it is. That's what I'm here to say.
Mr Tilson: Thank you for your presentation. I can't believe you haven't had an effect on all of us here today and I look forward to reading in detail your brief. My understanding is that this type of stimulation is not prohibited anywhere else in Canada. Obviously you have become an authority on this topic. Can you tell us about that and perhaps other jurisdictions in the United States?
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Mrs Singer: It is allowed in the United States in quite a few jurisdictions, and in all of the settings where it goes on it's highly controlled, as it is here in Ontario. That certainly is my understanding. You will hear from some people who will be coming up to Windsor and who will be able to talk with you about the treatment that's being given in some American settings.
In terms of Canada, I'm not aware at the moment of any jurisdictions and I'm not knowledgeable about the geography of faradic stimulation and the sort of research in terms of other provinces. But I can tell you that just because a province doesn't give it, perhaps for political reasons and all kinds of reasons -- because it's very, very sensational. It's not unlike another hot emotional issue like abortion; it seems to really, really sort of spark people. So it doesn't mean that there are not people languishing in institutions who are bound up in straitjackets and chemically comatose because they're deprived of this treatment. So just because it doesn't exist doesn't mean that it isn't needed. It just might be that for some political reasons it isn't given.
Mr Tilson: Thank you very much for coming to us.
The Chair: Thank you, Mrs Singer, on behalf of the whole committee. We thank you for the courage to share this experience with us.
Mrs Singer: Thank you. It was difficult but worth it.
PSYCHIATRIC PATIENT ADVOCATE OFFICE
The Chair: Next we have the Psychiatric Patient Advocate Office. Gentlemen, identify yourselves for the purpose of Hansard.
Mr Brock Grant: My name is Brock Grant. I'm the acting director of the PPAO, and with me is David Giuffrida. He's the legal counsel with the PPAO. You have before you a submission from our office that outlines some 17 issues with respect to the legislation and what our feelings are about it. We'll be pleased to answer any questions you may have with respect to our submission after we take you quickly through it. So I'll turn you over to Mr Giuffrida.
Mr David Giuffrida: Good morning. I want to apologize for the length of the submission. It runs 25 pages, and I would have liked to devote equal or I think greater space to talking about all the aspects of the amendments that we think are well considered, thoughtful and will improve the quality of life of people with disabilities in Ontario, and they are numerous.
But I think the time can be used most effectively talking about some of our concerns about the legislation and suggestions that can help ensure that it better balances the state's paternalism, our well-intentioned intervention to protect people from harm, versus the autonomy of the individual, which is also something we cherish in our society.
Given time limitations, I won't be commenting on every part of the brief. Some of the suggestions regard fairly technical matters that may be self-explanatory, and I'll just deal with them in the question period if you have specific concerns about them.
I want to turn first to the Health Care Consent Act. Issue 1 deals with the use of the word "appeal." It's a technical matter that we need not dwell on here, I think.
Issue 2 deals with exclusions from the definition of "treatment." It was heartening to hear Ms Bohnen's presentation to you about this issue, because in it our program raises the same concern, that we understand what the government's goal was in trying not to visit a whole lot of due process on really fairly non-invasive treatments, but, as Ms Bohnen has pointed out, we think that the scheme that has been adopted may miss the mark, and we've suggested another way that may be more responsive.
I'd like to talk about issue 3 on page 4 of the brief. This concerns the removal of all references to rights advisers and the elimination of the requirement that rights advice or notices be given to a person who has been determined to be incapable. I know even in the short time this committee has been considering Bill 19, this has been a subject of significant discussion, and it's an issue of great concern to our program as well. Our program has been providing independent rights advice to people determined to be treatment incapable for a number of years, and we believe that's the gold standard as far as ensuring the autonomy of the individual as far as ensuring that they have an opportunity to relate effectively to a complex system that can do very invasive things to them, perhaps well-intentioned but none the less very invasive and perhaps irreversible.
We believe that, at a minimum, an obligation ought to appear in legislation obliging health care professionals who determine someone to be incapable to inform the patient that they've been determined incapable and to tell them about their right to apply to the board. If it's not in legislation, will it happen? There have been a number of questions directed to that. I think the answer is clearly it won't happen, either at all or with any consistency. Is it already a standard of the medical profession, for example, that you must tell people about their right to go to the board and tell them they've been found to be incapable? No, it's not; it's a matter for discretion.
The College of Physicians and Surgeons representatives this morning were asked that question: Do you consider it to be professional misconduct? "No, we don't." They don't put it in the same category as, for example, informed consent. I think what the medical profession regards as the knowledge the patient needs to know has consistently been less than what the patient wants to hear. The Supreme Court of Canada, in the early 1980s, when they were making law about informed consent, said the standard is not what the reasonable physician thinks the patient should know. The standard is what the reasonable patient would want to hear. I don't think we can leave it, for example, to the medical profession and 22 other professions to internally decide what they think the patient ought to hear or whether they are too confused to get that information. I think we've had a clear indication this morning that this would not be effective.
I note too, on page 5, several examples where the stakes are much lower. Perhaps it's the licence of a door-to-door broom salesperson. The registrar or the director is not given discretion to decide whether or not to tell the person about their right to appeal, to decide whether they seem unhappy or happy with the decision and exercise their discretion. The registrar is presumably a reasonable professional person. We don't leave it to them. We've put it in the statute. When the stakes are so much higher, when the stakes are as high, as I point out, as a possible amputation, and you tell the person maybe they're in for gall bladder surgery -- because the woman in Alberta who just won a three-quarter-million-dollar judgement wasn't told that her fallopian tubes were going to be removed. She was told by a physician, who we must accept was in a relationship of trust with her, and 2,800 other people sterilized back then, that she was in for some other surgery.
Nothing in the Health Care Consent Act would require a doctor today to give a patient any more information. I'm not talking about eugenics in 1995 -- that's off the table -- but any other invasive, irreversible thing. You can lie to the patient, you can tell them it's something else -- after all, you've determined them to be incapable -- as long as you get consent from the substitute. Does the profession operate to a higher standard? We've heard this morning, no, they don't feel they routinely need to. It's a matter of discretion.
Issue 5 on page 8: Use of cattle prods on incapable people to be permitted. If we're going to contemplate a case in which the use of faradic stimulation for aversive conditioning is to be accepted, I think Mrs Singer presented the most compelling circumstances we can imagine. It is because such circumstances do exist -- and it is a controversial treatment. There are people who assert that gentle teaching techniques using exclusively positive reinforcement can uniformly work. But there is not yet a consensus in Ontario that they will uniformly work, and Mrs Singer made a powerful presentation about what may be one of the few exceptions.
That's why we think the better road may be, rather than an absolute ban at one extreme, or, at the other extreme, treating a punishment technique like a flu shot, that there be standards and accountability. I'm pleased to hear her describe the kind of standards that there are I assume in Ministry of Community and Social Services facilities. Nothing in this legislation would confine the use of cattle prods to Comsoc facilities. It could be anywhere. I don't know if these cattle prods got less painful in the last 10 years, but when I got zapped it hurt like the dickens. It has to for it to deter you from the behaviour they want you to stop doing. It's punishment.
On the subject of punishment, the suggestions that we make about aversive conditioning would probably be prudent to apply not just to cattle prods, but to other kinds of aversive conditioning. It's not part of our presentation to screen this video, but The 5th Estate, as reference has been made, broadcast a bit of journalism dealing with the use of arms being pulled behind the back until the person cries out in pain and verbal abuse as aversive conditioning. To keep someone from poking their eyes and ears out, if you balance the pros and cons, you might say that's the lesser evil. How about to make a 10-year-old eat his mashed potatoes? Because that's in here as well. If we think that's okay, then we'll treat aversive conditioning like a flu shot. If we don't think that's okay, I think we need to impose some standards so that a PhD in physical education cannot induce nurses to jerk people's hands behind their back. If we're troubled by that, then we need standards about it.
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I'd like to turn to page 11, the definition of "rights adviser" under the Mental Health Act. As I said before, the gold standard for ensuring that patients are told their rights is an independent rights adviser. That service has been delivered by our programs since 1986 or 1987. It's been delivered by lawyers sent by legal aid area offices for a number of years. And since April 3, people hired by and authorized by the Advocacy Commission have been giving rights advice.
The new definition of rights adviser would allow someone to be designated by the administrator of a hospital to be a rights adviser, and that's a clear conflict of interest. You've heard this morning from the College of Physicians and Surgeons just how uneasy it makes health professionals to give people blunt information about their rights. They want it to be a matter of discretion.
I think the relationship between a rights adviser and the person they're giving advice to is one of a strong fiduciary relationship. I think if you oblige a hospital staff member, who may spend most of their time as part of a treatment team, to try to work to that standard of an independent rights adviser, it puts them in a conflict of interest and may expose them and the hospital to legal liability if they don't do it to an acceptable standard. I think it's preferable to ensure the integrity of rights advice and, where the legislation provides for rights advice, ensure that it's independent of health providers.
At the bottom of page 13 we begin to discuss amendments regarding the Substitute Decisions Act. Again, the theme again we're trying to develop is one of balance, and it's not about demonizing all health care providers or demonizing all family members, but we can't canonize them all either. Unless we're born in a test tube, we're all somebody's family, and we can't all be angels. Some of us are jerks.
There is a police constable, Dianne MacInnis, Metropolitan Toronto Police, who this morning faxed me statistics about the elder abuse cases that come across her desk in her department. I haven't circulated copies for everybody. I left a couple with some members and I will leave an additional one. I spoke to her this morning. If we go down the list, who's most likely to be the abuser? The son. It's really upsetting if we have notions about, you know, there's no love like that between mother and son. Well, there's no abuse like that between mother and son either. If you go down the list, who's the perpetrator? Father, mother, daughter, son, stepson. Neighbours are going up on the list, maybe second after family. You can count on people you know for the best and for the worst. The nature of the intimacy in that relationship means that the well-intentioned ones will provide some of the best kind of care and run themselves off their feet providing for you, and it's most likely that abuse will occur from family members as well.
My concern is that the Substitute Decisions Act doesn't adequately provide safeguards to ensure that someone who wants to be your guardian clears even some basic checks. You can't be a block parent without running a CPIC check first, but you can be a guardian. The public guardian and trustee currently is meant to review all applications for guardianship and doesn't check to see if the person is an undischarged bankrupt, doesn't run a CPIC check to see if they've got fraud convictions. I think the stakes are higher there.
We talk about amendments related to powers of attorney on page 14. Again, I think the formalities surrounding the execution of a power of attorney are important. We heard yesterday that some people think there are privacy issues. I'd say too bad; the stakes are too high. A power of attorney is not a private contract between two parties. It's one that third parties rely on. Real estate is bought and sold; access is given to safety deposit boxes. In a sense it's like marriage; it's not in personam, it's in rem. It affects the community; you have witnesses to it. They should be people who aren't in a conflict of interest. Excluding the adult children is a good start. Yes, other people besides children can be heirs, but the fact that a safeguard is not 100% effective doesn't mean it shouldn't exist. It's better than nothing.
Page 16, amendments related to guardianship: There's a relaxing of the restriction that people who are providers cannot be guardians. Now they can be guardians of last resort if there are no relatives, and even in preference to the public guardian and trustee. I believe that if you're going to go down this road at all, you can look at a continuum of health care providers or providers. I'm not terribly troubled by a case manager working for a non-profit agency that doesn't charge fees being someone's guardian for property. I'm very troubled by the idea of unregulated operators of a seniors' home becoming the guardians for property for residents in those homes and then writing themselves a cheque for any amount they want as they jack up the fees for the à la carte services. There are rent controls for now; there are no controls over the cost of à la carte services. That's just a formula for abuse.
Page 18. I'd like to talk about the widespread use of statutory guardianship. It's been a slippery slope. We had the Mental Incompetency Act before April 3 and that wasn't frequently resorted to. It was antiquated and cumbersome; it was court-based. If you're a psych patient, though, an inpatient or outpatient, you could be determined to be financially incapable by one physician and with the stroke of that doctor's pen you're placed under the public trustee. It was really efficient. It was also appropriate for people of fluctuating incapacity, because the same doctor could lift it a month later when you've settled down and you're financially responsible again.
On April 3, with changes to the legislation, that model, which is so streamlined, was extended to people outside of psych settings. You could be in a nursing home. But it was a cautious extension. The person had a right to refuse it. Now with these amendments, statutory guardianship, which is not court-based, which proposes a tremendous amount of authority with an assessor, can be applied to anybody in the community, and provided they don't refuse the assessment in the first place, they can have statutory guardianship imposed on them by an assessor.
I know there's some quality control in the office of assessors. They're not a self-regulating profession. We've heard stories about fees that only constitute gouging that are then passed along to the estate, which suggests some assessors are practising economic abuse on vulnerable people. Many of them are regulated health professionals or other professionals, but those standards probably don't apply when they're relating to a person as an assessor, because there are no standards for that. There are internal standards in government, but it's not a self-regulating profession. When we repose that much authority on them, we ought to look at what kinds of standards we have for the individuals we're giving that kind of authority to.
I just think it's so seductive to say, "The court-based system is so expensive and cumbersome; let's have a streamlined one that's not court-based." As I say, the precedent in the Mental Health Act was one that was easy to turn on and easy to turn off. For people of fluctuating incapacity it was a good fit.
What we've got here now is that statutory guardianship is now easy to turn on. If the patient who's been determined to be incapable, the individual, wants to turn it off, if he can find an assessor who says he's capable, that's one way to do it and that's good. Otherwise, they have one kick at the can to go to the Consent and Capacity Review Board. But after six months, to turn it off they've got to go to court, which is a really onerous obligation to put on the individual. If you can turn it on that easily, you should be able to turn it off with a board hearing right through.
I'd like to talk, on page 21, about the confidentiality of clinical records. This is an easy-to-miss, I suppose, reg-making power added to section 90 of the SDA, but it would allow virtually anyone to go through another person's medical records. I'm least concerned about (e.4)(iii) in the middle of page 22, that allows the public guardian and trustee to have access to records. They are a public, accountable organization. As civil servants, the individuals take an oath of secrecy to the crown; they're covered by the freedom of information act. They have that kind of public duty and are individuals who have their livelihood at stake if they abuse their authority.
Up at item (i) we have an assessor. As I said before, there are some standards that apply to them but they're not really statutory standards. Assessors in their day job might owe a duty of confidentiality to their patients. That doesn't mean those standards apply when they're assessing someone. The really scary one is the middle one, (ii): any person who states in writing an intention to make the guardianship application. That's that person who wasn't going for something high-stakes like being a block parent, so he didn't need a CPIC check. We're talking anybody.
Now, (e.5), what kind of comfort does that give us that there can be regulations made governing the use and disclosure? You can't put an offence section in those regulations. That "any person" -- you don't have anything else to threaten them with. They're not going to lose their livelihood; they're not going to lose their professional status. They may not have any, and you can't put an offence section in there. What clout do you have to say, "Once you get that medical record, you can't give it to the local newspaper"? I'd suggest you have none. I think matters as important as this need to go in statute and not be the subject of regulation, and there needs to be restrictions.
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Finally, I'd like to talk about the last page, repeal of the Advocacy Act. We note its passing. We note that we've heard the government say that its repeal of the act doesn't represent in any way a repudiation of the need for advocacy for people with disabilities, but rather the need to create a different vision of how that service can be delivered.
We want to offer our resources and our 12 years, almost 13, of experience to assist the government in shaping that vision in the focus groups that the Ministry of Citizenship has already commenced, for which we are grateful. I think there's already a converging vision that you certainly don't need to replicate something on the scale as ambitious as the commission, but you are probably going to need some supervisory body that can create some curriculum for advocates so we can have confidence they have some basic shared knowledge, some standards, that they agree that they will not abuse their authority, if we're going to give them some authority, to have access to people in some settings. We have to have some sort of licensing mechanism to deal with that.
I'm going to pause there and entertain questions.
The Vice-Chair (Mr Ron Johnson): Thank you, Mr Giuffrida. We've got about three minutes per caucus.
Mr Marchese: Just some quick comments and to thank Mr Giuffrida for the presentation. I found it very reasonable and balanced, which is mainly the theme of your presentation. I like the fact that you pointed out that we shouldn't canonize nor demonize people, and again, that's part of what we need to do as society, and look at the various extremes and that all extremes seem to be a problem, and how we find the middle ground to deal with some of these problems is something that I found very useful.
I like the point you made about standards, in terms of whose standards are we living by? I think you pointed out that the standard we should be living by is what the patient would like to know. I think that's they way you phrased it. That's our concern as well, in terms of trying to understand how we can abuse power and how individuals lose their power in that process. So I just wanted to note those comments and I found your presentation very good. I hope the government members will read it carefully as well.
Mrs Boyd: I was interested, particularly juxtaposed to the previous presentation, in the concerns that you raise in terms of not just faradic stimulation, but the whole issue of aversive behaviour modification. Your solution, then, would be that it ought to be very strictly regulated, rather than the very permissive thing that is put in the act, which would allow any substitute decision-maker to allow aversive conditioning to occur.
You're saying what we need to be looking at is an amendment that allows it to occur under very specific circumstances that protect the client and that, I would think, prevent a widespread use of this. Aversive behaviour conditioning used to be used routinely in training schools, used to be used routinely in the various institutions for the developmentally disabled, used to be used routinely in psychiatric hospitals. Your concern is that we limit that in such a way that when the very special and specific case comes along it's possible for it to be used, but it's not possible for it to be used in an increasing manner, as we in fact see it being in some jurisdictions.
Mr Giuffrida: Yes, that's right. There's always the problem in an institutional setting, where the treatment interests of the individual must compete with the institutional interests; for example, to maintain order and discipline. The line gets really fuzzy about when that intervention, when that punishment is in the patient's best interests and when it's just to maintain order and discipline, which is an institutional goal. I think you do need external standards. Particularly if resources are reduced, it's going to be really seductive to keep people in line using punishment and just put a label on it, call it treatment and then say: "Well, we're trained professionals. It's beyond your purview." I don't think we can accept that.
Mr Clement: Thank you, gentlemen, for your presentation. I just wanted to get some elaboration on the last section, which deals with the repeal of the Advocacy Act. What I take from your presentation is that we all recognize that in our society as a whole there is a need for advocates in certain well-documented situations, and that there may be a role for some government involvement -- do I take it for educational purposes -- is that what you're trying to get at -- to make sure there is a body of information available to those who wish to act as an advocate in a particular situation? Is that the direction you'd like to see us go in?
Mr Giuffrida: The concern is not that government actually deliver any of the services, but that it makes sure an infrastructure exists that can deliver those services. I think the independence from government continues to be an important feature of any advocacy model. Appropriate stakeholder representation as far as governance -- I don't know that it needs to be 100% people with disabilities, because I think family members and enlightened service providers also have important insights. The public needs to have confidence, if someone shows up at the door of an institution and says, "I am an advocate," that the person has some basic understanding of what the disability is about, how the institution functions; if they're going to exercise a right of authority to look at records and have access to the client, that they're not going to abuse it and they understand the limits of it. Even some skeletal structure to manage and administer that could ensure a high standard there and be independent from government.
Mr Tilson: I think we appreciate your offer to assist in any rights process and I'm sure the ministry will be considering your offer.
I would like to ask a question specifically with the previous speaker, who I doubt would appreciate your using the words "cattle prod." Her husband is a medical practitioner, I believe. She seemed to be confident with the standards that were used. She made it quite clear this is the last resort; nothing else worked.
Mr Giuffrida: As I say, I think the fact situation she presented was the most compelling case for allowing the use of faradic stimulation. That is not to say that each and every case in which it would be applied will be as compelling or that the parents would be as thorough and conscientious as she and her husband were. We need to fashion laws that deal with best-case scenarios such as she presented and deal with worst-case scenarios, and that's why we need standards.
Mr Tilson: I'm looking at the last bullet point of your comments on page 9. Do you think in her type of case you should be making her go to the Consent and Capacity Review Board? I think you mention three to six months, on that basis, in her type of case.
Mr Giuffrida: I don't want in any way to suggest I'm an expert in this area. What I've heard is that positive reinforcement can have permanent beneficial effects but that negative reinforcement or punishment is something that needs to be applied forever. I think, before we sentence someone to being punished routinely for the rest of his life, there ought to be some oversight of it to make sure that when that particular treatment is withdrawn, no less invasive one will maintain him at a reasonable standard.
Mr Tilson: I guess the concern I have is how far the state is going to get into the face of a private individual. These people are seeking good --
The Vice-Chair: I'm going to have to stop you there and move on to the Liberal caucus.
Mrs Caplan: Just to follow up and finish that point -- I do have another point I want to get to -- I see the issue in terms of what is appropriate accountability, because the situation you have is not where an individual is consenting but where someone is consenting on his behalf. Whenever you have accountability, you have to have standards and monitoring.
I think what you want to put in place is not something that gets in the face of parents and families who desperately want appropriate treatment for their loved ones, but you want to make sure that the treatment is appropriate, that it is monitored and that standards are put in place. The concern I have is that this treatment will now be available outside of a Comsoc facility, anyplace where you may not necessarily have that kind of thing. I think that's the issue, just to frame it in a way -- I'm very sympathetic to Mrs Singer and was looking for a way for her to have access other than going to the minister for an exemption. I want to be very clear on that.
The question I have for you is, were you consulted by any of the ministers but particularly the Minister of Health and the Attorney General prior to the tabling of this legislation?
Mr Giuffrida: No. It's unfortunate. It's the first time in perhaps 10 years that I've been involved in law reform that we didn't have an opportunity to comment on draft legislation and have feedback. Perhaps some of the more technical points that we raise here needn't have taken up this committee's time.
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Mrs Caplan: That was the reason I asked the question. The minister had told us and I'd just assumed they had, and from the presentation it became clear that there were some technical things -- for example, I don't think the definition of whether it's an appeal or -- that should have been dealt with before and I hope they will take your suggestion.
My concern is that this legislation has no mandate given to anyone to ensure that there is any education or training, or it's not given to the colleges and it's on the rights advice that may or may not be given. I see that as an appropriate mandate for the Psychiatric Patient Advocate Office. I know you do some of that now. Just for the information of the committee and perhaps some of the members and people watching, could you tell us a little bit about what you do, and also would you be able to undertake some kind of standard-setting for training, both for rights advisers and future advocates? Is that a reasonable expectation of you?
Mr Grant: Yes, we're involved in both rights advice and advocacy. The program started as an advocacy program and then in 1987 we assumed responsibility for rights advice.
To answer your question as to the ability of our program to take on some kind of a training role, to the extent that we have the resources we have, we can probably do some of that. On an ongoing basis, that's questionable but certainly initially.
For example, I know there's a possibility of our program being asked to assist the Ministry of Health. If rights advisers go into psychiatric facilities in general hospitals, for example, and rights advice is limited to that aspect under the new legislation, and then of course there's still rights advice in the psych hospitals where we are -- that we've been asked to consider assuming some kind of a training role, will we be prepared to do that? Would we be prepared to assume responsibility for running the program in those facilities? I don't know.
Mrs Caplan: Right now, you only have a mandate for the psych hospitals, the schedule 1s, or no schedule 1s?
The Vice-Chair: I'm sorry, Ms Caplan. We're out of time. Mr Grant, Mr Giuffrida, I'd like to thank you for your presentation. We have to move on.
Mr Clement: On a point of order, Mr Chairman: I believe the presenters did mention that they were part of the Ministry of Citizenship, Culture and Recreation focus group on advocacy, so they were consulted.
The Vice-Chair: That's not a point of order.
Mr Clement: Oh, I'm sorry, Mr Chairman.
Mrs Caplan: They didn't say that.
Interjections.
The Vice-Chair: Excuse me, Mr Clement, Ms Caplan.
CHEDOKE-MCMASTER HOSPITALS
The Vice-Chair: The next presentation is going to be by geriatric psychiatric services, Chedoke-McMaster Hospitals, Dr Adrian Grek. Good morning, doctor.
Dr Adrian Grek: Good morning. I'd like to confine myself to just one issue, a perhaps unanticipated complication of the existing legislation which I hope could be amended.
I submit that the present legislation hampers humane, expeditious and practical care by preventing qualified physicians from certifying certain elderly psychiatric outpatients as incompetent to manage their estate, and I suggest that the legislation be amended to restore such authority to qualified physicians.
My special interest is in the psychiatric problems of older people. My patients are all elderly. Most of them have serious mental illnesses, including dementia, depression and delusional or paranoid disorder. Often they suffer from disabling physical illnesses as well.
Many of them still live in their own homes, places which of course give meaning and security to their lives. There are several who have no families or friends to speak of for various reasons, perhaps because they've outlived them, or perhaps because their behaviour has frightened other people away, or because their illnesses interfered with the development of lasting relationships in earlier life or because they have been displaced from their origins and from their connections. Psychologically, physically and socially these are very vulnerable people in very fragile circumstances and they are at risk of neglect, self-neglect, exploitation and institutionalization.
The team of which I'm a part at Chedoke-McMaster Hospitals, a team which comprises physicians, social workers, nurses, occupational therapists and a psychologist, dedicates itself to the assessment of the circumstances and requirements of such people and to finding ways to ease their distress and to support their autonomy.
At the request of family doctors or of community agencies, we see and help to look after such patients in our clinic or in their homes and maintain close links with formal and informal caregivers.
Part of my work over the years has included the specialized assessment of the competency of sick, elderly people to manage their affairs and to make choices which promote their best interests. My initial assumption in each case is that the person is competent and I deeply respect a patient's right to choose for him or herself. I believe, though, that it's my responsibility to try to find and demonstrate competence in situations where others may have questioned it. I do not take lightly a finding of incompetence; it can be a major blow to a person's self-esteem and independence. An assessment such as this is rarely an end in itself; it's the first step to helping a patient find the means to an autonomous but appropriately protected life.
Unfortunately, some of our patients are not competent to manage their finances because of profound impairment of judgement and insight. This impairment, sometimes permanent, sometimes temporary, arises from a loss of memory or from an inability to work through complex decisions or from the pernicious and misleading influence of delusions. It may result in an inability to pay for necessary accommodation, food or assistance with everyday activities. Without these, the chances of suffering, deterioration, even death, increase and hospitalization or institutionalization, instead of less intrusive measures, are often thought inevitable to stave them off.
The existing legislation interferes with my ability as a psychiatrist to arrange prompt protection for outpatients who desperately need it. It exposes them unnecessarily to intrusive and confusing duplication of assessments, to expense potentially beyond their control, and to cruel and dangerous delays in the provision of protection and support.
As a psychiatrist, I can no longer issue certificates of incompetence in respect of my outpatients. I retain the authority to do so in the interests of inpatients and so I presume therefore that my skill and motivation in this field are not in question, nor those of psychiatrists in general.
If I recognize such incompetence in an outpatient during the course of an often lengthy assessment, often done with quite a lot of preparation in conjunction with colleagues from other professions and agencies, often with an interpreter, often in an immobilized patient's home, I'm now effectively unable to obtain the immediate protection of the public trustee for the patient.
Rather, I have to advise the concerned family or friends -- who very possibly don't exist or are out of the picture or are themselves overwhelmed or frail or have interests in conflict with those of the patient -- to seek a capacity assessment, for which they will be financially liable and for which there isn't a set or a maximum charge. I understand that the cost of such a capacity assessment may be substantially more than the fee OHIP pays me and other psychiatrists for our psychiatric consultations which include, but are not limited to, an assessment of capacity.
If such family or friends are missing or are not able or willing, then I, or the hospital where I work or my colleagues, may seek an assessment of capacity by a capacity assessor. We would become liable for the cost of repeating an assessment I've already done. OHIP is going to pay me for my assessment anyway and the hospital is already paying for the time and efforts of my non-medical colleagues.
In due course, a capacity assessor may be found. Usually less experienced than my colleagues and I are, he or she may take longer than we did to perform the assessment; he or she will have to subject the patient to a repetition of intrusive and perhaps unwelcome personal questions. In my experience so far, capacity assessors have wanted to take my opinion into account in the preparation of their own reports and recommendations. I'd like to oblige, but cannot do so without proper authorization.
Added to the patient's burden then is the need to worry about a form authorizing the release of psychiatric information. If the patient's not competent to sign such a form, another layer of capacity assessment and substitute consent is added to the process.
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If the patient is unwilling to agree to a capacity assessment, the putative family or friends may seek a judicial solution, again possibly at considerable inconvenience and expense.
If the patient is at imminent risk by reason of incompetence to manage his or her estate, then I or the putative family or friends may seek the intervention of the urgent investigations branch of the office of the public guardian and trustee, but so far, this has not been a rewarding resort. My authority to breach the patient's confidentiality in an approach to the branch is not clear in the existing legislation or regulations, and in any event, the branch has been very slow to respond to requests to intervene.
Before the introduction of the present legislation, I could issue an outpatient certificate of incompetence as soon as my assessment revealed incompetence and its attendant risks. The office of the public trustee could promptly investigate the situation and act, if necessary, to protect the patient's assets; could also act in the patient's best interests by superintending the use of those assets according to the best advice available. Now weeks or even months can pass before the patient is appropriately protected. This can be dramatically catastrophic if a predator seizes the opportunity to defraud a vulnerable patient.
It is less dramatic but no less tragic if the patient has to move into a hospital or an institution because the law intended to protect the autonomy of frail elderly citizens actually delays, beyond the point of usefulness, measures to support that autonomy at home. Once a frail elderly person is institutionalized, it's almost impossible to restore him or her to the home they've lost.
I wouldn't at all like to leave the committee with the impression that I believe in the infallibility or superiority of a psychiatric judgement of competency or incompetency in any case. The former legislation made ample and welcome provision for appeals by patients, families and advocates to a board of review. I am unable to see, however, how the rights of patients are advanced by denying them the protection and assistance that may promptly follow assessments by qualified physicians working in conjunction with resourceful, compassionate and expert multidisciplinary teams. Nor can I see how the circumstances of frequently poor and vulnerable elderly people with psychiatric illnesses are enriched by the requirement that their advocates squander money on duplicating adequate and adequately reviewed assessments of their competency.
Mr Tilson: Thank you for your presentation. Many of us had presentations in our own ridings on this whole topic when these three bills were before the former government. Most medical people, in fact I don't think there was anyone, any medical health provider, who didn't come to me and say they were simply made dizzy by the proposals that were being put forward as to the very topics you're talking about. They didn't know which way to turn. They were worried about liability. They were worried about breaking the law. They didn't even understand it.
With respect to the issues you have raised, if you were included in the category designated as assessors in the legislation, under the regulations of the legislation, of Bill 19, wouldn't that solve much of what you're talking about?
Dr Grek: I think it would.
Mr Tilson: It's as simple as that, so we'd make a regulation designating different categories of who are assessors and who are not.
Dr Grek: Yes.
Mr Ed Doyle (Wentworth East): I have a very simple question for you, and that is, do you get the impression these days that you have to become a lawyer before you can become a caregiver? Are we reaching that point?
Dr Grek: Not really. The law is complicated, but the clinical issues are very complicated themselves and I don't think they can be separated. I think the complications to which I refer here may just have been unanticipated before the problems attested in practice.
Mrs Caplan: Nice to see you again, Dr Grek. My questions really relate to the issue around the need to let somebody know they've been found incapable. Under the Mental Health Act, you're required to tell someone when you have found them to be incapable; you're also required to let them know that they have a right to appeal. Do you find that difficult or onerous?
Dr Grek: Again, not particularly; it's not always pleasant, but I think it's my duty as a physician to let patients know what course of action I either think I should take or that I have to take in respect of them.
Mrs Caplan: I knew that that's what you were going to say, because under the Mental Health Act that's just been the normal course. It's not always pleasant. Do you see any reason why any patient in any setting, whether it's under the Mental Health Act inpatient or in a schedule 1 or someone who's found incapable for the purpose of any treatment -- now, this is on the treatment side -- shouldn't be told that they've been found incapable of making a decision about their own treatment and be told that someone else is going to make the decision and that if they object they have a right to appeal?
Dr Grek: I believe that it is a physician's responsibility to inform a patient of such a thing. On the other hand, and maybe this isn't the question you're asking, I also think it's a physician's duty to let a patient know of his or her right to appeal if there is one, certainly. I think it can become problematic if the physician or other health care provider becomes the instrument of arranging such an appeal, because there is a conflict of interest.
Mrs Caplan: I agree with that, and that's not what I'm suggesting. Would you be surprised to know that this legislation imposes no obligation outside of the Mental Health Act for anyone who evaluates or assesses someone incapable to let them know that they have found them to be incapable; there's no obligation to let them know that they have a right to appeal that finding? Would that surprise you?
Dr Grek: Well, I probably should have read the bill in more detail.
Mrs Caplan: What I'm suggesting is that the same rules that apply to providers such as yourself under the Mental Health Act and that apply to the public guardian and trustee's office just apply to anyone. Do you have any problem with that?
Dr Grek: No.
Mrs Caplan: Thank you. It just seems to make common sense. I use that term advisedly around here.
The other question that I have is on the issue of confidentiality. I agree with you about your need to be able to share with the office of the public guardian and trustee, but there is a provision that was raised by the last presenters that would permit anyone who applies in writing to make an application to be appointed a guardian -- anyone -- to receive all medical records, including all the sensitive mental health records. Do you have concerns about that?
Dr Grek: Well, I do. I haven't been able, perhaps because of my own inexperience in reading laws, but I did seek legal advice on the question as well. I've been unable to fathom just where my authority as a physician, as a psychiatrist in possession of such records, actually arises to release information in all sorts of circumstances in this connection, and it's not at all clear to me or to the lawyer who advised me.
Mrs Caplan: I think that puts it very well. The last question that I have relates to the previous presentation as well. At the present time, the Psychiatric Patient Advocate Office has responsibility only for provincial psychiatric hospitals. You deal with them all the time at the Hamilton site. This legislation does not expand their mandate to include any of the schedule 1s or in fact to take over any of the responsibility when the commission is phased out. I'm talking now about the PPAO. This does not give them any mandate to expand their services to fill that gap. Do you believe that they are the appropriate organization, given their experience, to provide that service in schedule 1, in general hospitals, and perhaps in community mental health programs, as well as the psych hospitals? Or do you think there should be a separate and different other agency?
Dr Grek: I don't really know.
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Mrs Caplan: Do you think the people, whether they are in a psych hospital or a general hospital or a community mental health program -- I'm talking now Mental Health Act -- should have the same rights, or do you think people in psych hospitals should have a special status?
Dr Grek: No. They should have the same rights.
Mrs Boyd: Thank you very much for the presentation. I was very interested in the viewpoint that you provide, because it is a little different. I had a couple of questions. I'm glad that Mr Tilson asked about whether a regulation listing physicians in your situation as assessors would solve the problem, and you seemed to think it would, that that would be good.
I'm wondering, if that were there, would there also need to be a regulation that would free you to share the information with an assessor who was not you? On the third page you talk about not having the authority currently to share that information without going through the same kind of process again. Would it help, if there were to be such a regulation, for that regulation to clearly specify that it enables you to share that information with any other assessor who may have been called in?
Dr Grek: Yes, I think that would be helpful. If I may add, I think it would also be helpful if the regulations could clarify a physician's authority to initiate an overture, in respect of an outpatient, to the Office of the Public Guardian and Trustee, because at the moment I believe the regulations and the legislation allow us to respond to a request from that office, but it's less clear if we've in fact discovered a vulnerable person and need to notify the office as to how much information we can provide, especially to alert them with details as to the urgency of the problem.
Mrs Boyd: Of course, you're seeing more and more outpatients as deinstitutionalization occurs. So that's going to be a growing problem, and if you're the first-line caregiver, you're very often the one who would see some of those. You're just looking for a mechanism to alert the rest of the system, that you as part of that team would like to see something happen. I think that sounds very reasonable.
I think on the last page you're expressing real concern that the avenue for appeal by families and the patients themselves and advocates to a board of review seems to have gone by the board in this version of the legislation. Can you expand a little bit more on why it's important to have that avenue for appeal, what that does in terms of the confidence that people have in one another as acting in the best interests of the patient?
Dr Grek: I was commenting less on the state of appeal in the present legislation than I was on the sense of security that I believe the old legislation provided both to me and I presume to patients and their families that my decisions were not merely arbitrary or merely the last word on a matter as important as -- I'm a doctor, not a judge. I do believe that the decisions I make should, as long as it doesn't hamper the provision of treatment in a timely way, be reviewed by an outside, independent authority.
Mrs Boyd: You'd like to see a restoration of that then?
Dr Grek: I actually was not aware, I have to admit, that the right of a family to appeal against a finding of financial incompetence -- well, I no longer have the right to make that finding anyway, so they have nothing to appeal. For inpatients, they retain the right to appeal my finding.
Mrs Boyd: You made a comment about the inability, with its current budget and resources, for the guardian and trustee to undertake these urgent investigations, and I gather that's an ongoing problem. An urgent investigation means something might happen immediately.
Dr Grek: Yes.
Mrs Boyd: You would like to see that taken note of in terms of the administration of this process, because very often, as soon as there's any whisper that there might be an open door, I guess a lot of assets disappear fairly quickly, don't they?
Dr Grek: Well, I think in some cases they can.
The Chair: Thank you, Dr Grek, for your presentation and candid answers.
Mrs Caplan: On a point of order, Mr Chair: I put it to Mr Clement, who I know likes to be accurate in his concerns that he places on the record. I checked with the PPAO, and in answer to my question as to were they consulted prior to the legislation by anyone, in fact they were not. The consultations that took place two weeks ago, after the legislation -- and in fact it was not a consultation; they were part of a focus group. So for your information, the answer they gave was absolutely correct: They were not consulted prior to the tabling of the legislation.
The Chair: Thank you, Mrs Caplan. As we know, that is not a point of order but thank you for the information. Mrs Boyd.
Mrs Boyd: I think this is a point of information. In the presentation that we've had from the psychiatric advocates, mention was made of this list of elder abuse issues that had occurred that had been presented by one of the police officers. I wondered if we could table this for the information of all the committee, because I understand everyone did not get a copy.
The Chair: Is there any objection? Since not, you can table it. We'll obtain copies and deliver it to members.
ONTARIO ADVOCACY COALITION
The Chair: The Ontario Advocacy Coalition, Mr Endicott and Ms Harman. Welcome. Thank you for coming today. If you could identify yourselves for the purposes of Hansard, we'd be much obliged.
Mr Orville Endicott: I am Orville Endicott, the coordinator of the coalition, and I apologize for not informing the clerk of the other people who would be part of our delegation. They are Mae Harman, one of the two co-chairs of the coalition, and Patricia Bregman, from ARCH, which is a member group in the coalition. I'm going to turn things over immediately to Ms Harman.
Ms Mae Harman: Thank you. I'm sorry that our other co-chair, Ralph Evans, cannot be with us today. He represents the Association of the Physically Handicapped (Windsor and Essex County), and neither his organization nor ours could afford the train fare to bring him here today. It's always a problem for Ralph to get here anyway because he has a large wheelchair and only some trains carry wheelchairs and a couple of times he has missed his train because the taxi that accommodates wheelchairs has not got there in time. I'm sure Ralph is with us in spirit today, anyway.
The Ontario Advocacy Coalition is made up of 47 member organizations representing seniors and people with disabilities. The prime purpose of the coalition has been to obtain effective advocacy legislation, to monitor its progress, to criticize when we felt it was off track, to make positive recommendations for change and improvements in the service, to help educate the public about advocacy and to support the work of the body legislated to conduct the program in so far as it met with the principles which we feel are fundamental to advocacy.
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The announcement that the Advocacy Act is to be revoked has been met with dismay, consternation and anger by those of us who over the last 15 years have studied, discussed, written, presented, argued, demonstrated and compromised in the interests of obtaining legislation to protect vulnerable people. Now, after all the time and energy we have invested, we must begin again from scratch the fight for a legislated framework for advocacy, and this in a climate which judges the vulnerable as losers who must be punished by further loss of rights, dignity and independence.
As a senior and a volunteer, I am very angry about both the loss of this legislation, which, while not perfect, we felt could provide effective service, and the waste of my personal involvement along with that of my colleagues, some of whom have been involved much longer than I. At the same time, I cherish my relationships with the members of the disabled community, who have by their efforts, commitment, sacrifice and good humour inspired and challenged me to stay involved and continue to actively advocate.
The underlying theme and purpose of the Advocacy Act was to empower vulnerable people by helping them to understand their rights and the choices available, assisting them in carrying out their wishes and providing mechanisms whereby they could participate in the process of developing advocacy services.
That many of our most vulnerable adults suffer from maltreatment at the hands of their caregivers, either family or institution, is no secret, as witness the number of court cases and coroners' inquests which have come to the attention of the public through the press.
Early in my membership in the Ontario Advocacy Coalition, as a representative of Canadian Pensioners Concerned, I went in 1990 to Orillia to participate in a demonstration outside the building where a coroner's jury was investigating the death of Joseph Kendall, beaten to death by a fellow resident in an unlicensed boarding home.
Like child abuse 50 years ago, what we know about abuse of older people and the disabled is but the tip of the iceberg, but it is through those cases which come to the attention of the press that the general public is becoming aware that the old and the disabled are often very vulnerable.
Dependency on others for care and treatment tends to deprive people of the right or the possibility of speaking out on their own needs and wishes. As with children, old people are often fearful that worse punishment will befall them if they complain, and who wants to admit to being abused by their own children? Being dependent on others may have robbed them of any sense of having rights. So they keep quiet and endure. Society's worship of the young and beautiful robs the old and the handicapped of their sense of worth and dignity.
According to Professor Dick Sobsey of the University of Alberta, disabled people are two to 10 times more likely than others to become victims of repeated physical and sexual assault. A phone service from my local police station repeatedly warns me of current scams to persuade seniors to make unnecessary repairs to their homes or withdraw sums of money from their banks. Caregivers, family and otherwise, sometimes misuse the funds of those in their care. Ironically, the Provincial Auditor disclosed the misappropriation of residents' funds by staff in provincial institutions on the very day Bill 19 was introduced in the Legislature.
Psychological abuse is another kind of suffering inflicted upon many vulnerable people. Failure to provide adequate care, empathy and compassion is abuse also. Sometimes a caregiver is herself too stressed to give care and may lash out at the person she is caring for. Overworked and underpaid staff find it difficult to deliver tender loving care. Even before the recent rounds of cuts in spending on health care, one chronic care hospital in Toronto was trying to make ends meet by requiring ambulatory patients to stay in bed all day in order to reduce staff time.
The history of the Advocacy Act goes back to the early 1980s when a member of organizations, and especially ARCH, now titled A Legal Resource Centre for Persons with Disabilities, and Concerned Friends of Ontario Citizens in Care Facilities, began to lobby the provincial government for legislation that could make advocates available to handicapped persons and seniors who were unable to speak for themselves in regard to the inadequacies of the treatment they were receiving or the abuse they were experiencing. Concerned Friends developed a model bill during this period. In 1986 the Ontario Advocacy Coalition was formed by organizations of persons with handicaps and seniors to jointly pursue legislation.
The Liberal government of Premier David Peterson recognized the need and called for a review of advocacy for vulnerable adults, which resulted in the late Father Sean O'Sullivan's report in 1987 entitled You've Got a Friend. O'Sullivan, as we know you realize, had been a rather celebrated Progressive Conservative member of Parliament. We had reason to expect in the late 1980s that advocacy for vulnerable persons would not become the political football which it has sadly turned out to be.
O'Sullivan wrote in his report, "The lack of coordinated advocacy services accessible to all vulnerable adults requiring assistance is a profound injustice." In the executive summary, he stated: "Ontario needs advocacy. More particularly, we as Ontarians need to be advocates. Most of us already are. We can do more. If we are to improve our society, we must. Primary responsibility for advocacy education and the development and support of advocacy services is the proper role of government."
Writing back in 1987, Father O'Sullivan deplored the fact that the system lacked a clear mandate to provide advocacy services as there were no uniform standards of service or training programs for advocates, and those who did advocate were hampered by the lack of a clear right of access to care facilities, clients and clients' records.
The then Attorney General, Ian Scott, himself now handicapped following a stroke, was preparing to bring forward legislation following the 1990 provincial election, but the government changed. The NDP did bring forward a bill, which was proclaimed in 1995 but, alas, is to be trashed by the passage of Bill 19 before the commission had time to organize and demonstrate what it could do. Removal of the bill undermines the rights and safety of all vulnerable people. The principles which the Ontario Advocacy Coalition consider fundamental to advocacy are attached to this report.
I'm going to ask Orville Endicott to continue the presentation.
Mr Endicott: I wish we had time to go through those 15 fundamental principles that the coalition has identified. I suppose I hope equally fervently that the minister at some point in time will be prepared to sit down with us so that we can talk to her and to her staff about them. We don't have time to do that this morning.
I thought I would simply consider with you for a minute some of the most fundamental issues that you are going to be considering, not only with respect to advocacy, but with respect to the entire content of Bill 19.
It is a delicate attempt, this kind of legislation, both what we have in effect now in the province and in Bill 19, to balance some very basic concerns about the lives of people who are vulnerable because of disability and age. One the one hand we have the concern that these people are kept from harm, that services that can be of assistance to them are available to them and that their physical needs are met. On the other hand, we have concerns for their autonomy, for their dignity, for their right to participate in decisions that are made that affect their lives. So basically what you are balancing here is protection versus empowerment. When I use the word "versus," perhaps that's ill-advised, because I don't think we have to make a choice between one or the other. I think protection of people's rights is a fundamental part of the general protection of their status, of their health, of their wellbeing in our society.
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The reason our coalition is so concerned about the future of advocacy and about what is obviously going to be a delay in reaching that future is that advocacy is about empowerment. We take serious issue with those who have said that advocates exercise power over vulnerable persons. That is not advocacy. That would be a clear violation of any ethical standard for an advocate. It works the other way around: Advocates take instructions from vulnerable people, and that is one form of empowerment.
Another form of empowerment of course was in the whole process by which we got advocacy legislation. It didn't come from government -- I've had to say this in a lot of forums over the past few years -- it came from the community of vulnerable people. When you are taking the action that this legislation is in section 1 of Bill 19, don't think that you are undoing something done by the previous government; you are undoing something done by ordinary people all across Ontario in the creation of the Advocacy Act. As Mae said, it wasn't perfect. Whatever succeeds it will probably not be perfect either, but the imperfection can be measured best by the degree to which it might have failed, or what succeeds it will fail, to empower vulnerable people.
Now I'm going to ask Patty Bregman to use whatever few minutes we've left for her.
Ms Patricia Bregman: I will take just a few minutes. I guess I'm here to bring you back down to the practical, because I want to help you understand in a sense why you're going to be hearing some very emotional submissions from vulnerable people.
We're pleased that the government is giving an opportunity for people across the province to present. We do think it is unfortunate -- and I will anticipate Ms Caplan's question -- that not only were we not consulted prior to the introduction, but we have been writing to the Premier and to the Minister of Citizenship from the day of the election. We knew what they had said, both in the Common Sense Revolution and in their response to ARCH, and we made an offer, and a very good-faith offer, to work with the government to see if we could develop another system that met the goals the government had, that met fiscal objectives but that still maintained the absolute, fundamental principles which nobody has wavered from from the beginning, which are those that Sean O'Sullivan enunciated of independence, lack of conflict of interest, incorporating volunteers and incorporating families. We have yet to get a response to that letter. We have had one consultation session in a limited focus group.
I sit on the implementation advisory committee that is intended to advise the public guardian and trustee on implementation. The first meeting of that committee called since the election was two weeks ago. We were instructed to come to that meeting -- and I unfortunately couldn't go -- not to discuss any concerns we had with the legislation, but only how it would be implemented. This is unfortunate. In the end, as you hear submissions which raise very legitimate concerns not only about the lack of advocacy but about the loss of rights and the lack of balance in the remaining legislation, you're going to have to take some time now to reconsider.
We are still willing to talk to you. I want to make it clear we are trying to do everything we can to assist you. I'm going to give you just one example -- you'll hear many -- of the kinds of concerns that we see. You're probably not as familiar with the concerns. Vulnerable people can't go to town hall meetings. Often, if they are abused, their families won't let them out of the house. They don't have the same ability to talk to people.
When you think about the promise of the professions to protect these vulnerable people, which I know is one of the proposals, I want you to keep in mind what led up to Bill 100. I've been very involved with the regulation of health professions for a number of years. I just want to remind you how many years it took the professions to acknowledge that there was abuse. Remember that the vulnerable people we are talking about cannot speak, often, cannot be heard.
We've just handled a case where a physician in a group home was found guilty of sexually abusing a number of young men with disabilities. There have been reports of abuse over the years. The only reason our client was willing to continue was that he had an independent advocate based in his home town. It took him months before he was willing to talk to us, let alone lawyers at a college somewhere far away. You need to just remember the vulnerability.
The one story that always strikes me in terms of where the balance is -- and we'll say as a proviso that we are not suggesting that families are all abusive, that families don't have best interests -- we are doing this and talking about the downside only because we keep hearing that everything has to be streamlined to protect families. We want to remind you of the other side.
We had a call from a woman who was admitted to the hospital for serious surgery. She had multiple disabilities and kidney failure. She had previously arrested in the hospital and knew that she could be resuscitated and wanted to be resuscitated. She had no contact with her family for a number of years. They'd institutionalized her and thought that her lifespan was long enough. She was articulate and capable.
She went to the hospital with her landlord, who is a friend, and said to the doctors and the nurses, "I want to be resuscitated." Around midnight, just as she's getting to sleep and dopey from the medication, she hears a discussion among the nurses that the doctor had thought she was too confused to be able to make that decision, called her parents, who lived out of town, and put a DNR order on her chart. This woman went through the night and that surgery absolutely terrified as to what would happen.
Here we have somebody who clearly would have been capable, clearly had given instructions and yet was powerless to do anything about it. She had a communications disability on top of everything else and couldn't even pick up the phone without the assistance of those same nurses and doctors that had gone behind her back to her parents.
This is not, unfortunately, unusual. You'll hear more stories like that. We will be submitting a more comprehensive written brief in order to respond to some of the things we heard from the minister yesterday and to accept his invitation to try to come up with some concrete proposals.
Think about this: We've circulated two documents dealing with abuse; one is a bibliography. I distribute it because in every meeting I've been at with ministry staff they've always said, "Is there any substantiating documentation that people are being abused?" The bibliography comes out of an excellent book by Dick Sobsey, which was just published, and will give you a number of references. The article comes from the Roeher Institute, which was also just published, excellent book.
It may help you understand and put yourselves in the place of the vulnerable people and maybe encourage you to work with us to see if we can find a different way, if you're not willing to go along with the Advocacy Commission, to at least find some mechanism to ensure that people are empowered. In the long run, it will save you money.
Mrs Caplan: You anticipated my question, and I am disappointed to hear you were not consulted. I know I met with you as well and it was our party's intention to dismantle the Advocacy Commission as it exists. We made the offer to work with you to find other alternatives, and I suggested there are other mechanisms that could be very cost-effective and that would work.
I'm sorry they haven't given you the opportunity to work with them to put those forward, because the point that you make is an important one, and that is the issues that were raised by O'Sullivan and the issues that were raised in the Manson report. The work that was done by Fram and his committee is just as valid today. We know there were problems with the way the Advocacy Commission was set up and that it was unaffordable. But that doesn't mean that you throw out, using the old cliché, the baby with the bathwater and that there isn't something that can be put in place.
You've made an excellent presentation, and I hope the presentations that this committee will hear will influence the government at least to open up a dialogue with you to put some of those alternatives in place. I believe that this legislation could be amended to do some of those things, that you don't need separate advocacy legislation. Would you agree with that?
Ms Bregman: I think that's entirely possible. We'd have to look at it, but certainly we're quite prepared to look at amendments that would reshift the balance and make sure it really does what it was intended to do, which is to enable vulnerable people to make decisions, with assistance, with support, without having to have the most intrusive act a person can do, which is take over your life.
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Mrs Caplan: I also think it's important to recognize that there are three distinct interests, not vested interests but certainly legitimate interests. Those are the interests of the patient or client or vulnerable person. That's one category. Another is the interests of the families, most of whom love them and want to take care of them. Sometimes they don't want them to be able to risk in any way and, as you've said, the balance in making choices that might involve some risk is a conflict with even well-meaning families. The third is the interests of the providers who want to offer care and have obligations to make sure that they get informed consent, although there are questions now about whether they should be obliged to let someone know that they've been deemed incapable.
I know what your answer is going to be but, on the record, do you feel that an assessor or an evaluator under this act should be required to let the individual know that they have been deemed incapable and it has been decided that they are incapable, under the law, to make decisions for themselves, and to let them know of their right to appeal at least that information?
Ms Bregman: I go one step further. I think at a minimum, they have to, first, tell them what their rights are and, if requested, assist them in exercising those rights, and there has to be an assurance that there will be no reprisals from a request for that assistance. That's something that exists under the Human Rights Code.
Second, to protect the care providers, you need to build in some protection for them against reprisals, because we've had a lot of calls from service providers who say: "My boss won't let me do this because the person we're advocating against happens to be on the board. I'm afraid to do it, and we don't know what to do."
I think you need to offer protection to the person making the request, but also I think there are some excellent caregivers out there who would like to be doing more, but in this time of layoffs and fear for job protection are feeling quite vulnerable themselves. It's certainly what we're hearing. I suspect you may hear that from some of them.
Mr Marchese: Thank you for the submission. I'm one of those who believe that the repeal of the Advocacy Act isn't a responsible act. I've been through the Employment Equity Commission hearings. They repealed the act and said that they would have an equal opportunity plan in place, of course. We never knew what that plan was and still don't know, and we're likely never to know what that plan is. The repealing of an act in itself with the sense of somehow we're going to get something is, to me, irresponsible. So I'm very concerned and worried about what they're likely to bring in its stead.
In response to Mr Tilson's question, this is what the Minister Mushinski said about the commission, how much they had been spending and what they've been doing. She says the following, which worries me because it's indicative of her feelings around the whole area of advocacy and rights advisers, I suspect.
"I can tell you that they haven't been advocating advocacy. The only thing they've been doing is providing rights advice, to the tune of $18 million. They're spending on rights advice approximately $500,000 a month. The Advocacy Commission itself has not done anything other than rights advice for the last 12 months. They've not done anything about advocacy and the rights of vulnerable people at all, other than providing rights advice and, as you suggested, going into people's homes. So it's a professional bureaucracy, and it was the whole intrusive nature of that bureaucracy that a lot of the advocates themselves" -- we don't know who they are -- "have been so outspoken about. That's the key reason we've repealed it."
I just wanted a reaction from any one of you with respect to that.
Mr Endicott: I think we would be remiss if we didn't commend the Advocacy Commission for all the good work they have done. Particularly they endeavoured to get to the community level and not to establish themselves as an advocacy monopoly. That of course takes time and, under the best of circumstances, there would have been a good year to develop the capability to provide advocacy in the community. A commission, presumably, could do it in a week, be geared up to meet those needs, but that was not the direction that they chose, and we commend them for going to the community level.
Mr Clement: Thank you, Orville, Mae and Patricia, for taking the time to be with us this morning. I just want to say at the outset that I'm sorry our efforts to get this dialogue going haven't met your expectations. You know, Orville, I spent half a day getting heck from you guys and persons at your great debate, and I learned a lot from that process.
Of course we included you, as the Ministry of Citizenship, Culture and Recreation, in terms of our future directions for advocacy. I just want to state for the record that those efforts are in good faith. Obviously, we're not meeting your expectations and we've got to try harder to do so, but I want to put on the record that from our perspective it is in good faith.
I want to go back to Father O'Sullivan, who was a man I knew and was a man of great moral character and great moral influence in Ontario, and to the words he said, because I don't disagree with anything that you have cited him for: "We as Ontarians need to be advocates." Not a commission with a bunch of paid advocates, but "we." It's our moral duty as citizens to be advocates. Most of us already are or should be. Primary responsibility for advocacy education should rest with the government. I don't disagree with that. Maybe there are some standards we have to set and some information we have to get out.
Am I barking up the wrong tree here or is there, in his words, some lesser role than what the previous government had suggested, interpreting what you had demanded? Is there something we can do to get to the root of what Father O'Sullivan was saying?
Mr Endicott: One of the things I wanted to take up with you is I think you've presented us with another either/or that is unnecessary. Obviously, it is good for as many people as possible to be advocates, but in the real world there has to be organization, there has to be structure, there has to be coordination, or else people are going to fall through the cracks as they have been doing in a world where there are more people with good intentions than otherwise.
Mr Clement: I want to follow up on that because I think that's an important concept to get on the record here. There is, I think, a governmental role to be played, but I don't want to minimize the individual responsibility. What tends to happen in life, as you put it, is that whenever government says, "This is something we want to legislate," people as human beings naturally say: "The government is looking after it. I don't have to look after it." We have to get back to the moral justification that Father O'Sullivan had said, which is it's our individual duty, responsibility. This is part of our humanity, to concern ourselves with this. Is there something wrong in the way I've characterized it?
Ms Bregman: Just let me say two things. One is, you may not be aware, but when the Advocacy Commission was formed, there was enormous pressure from the community to say to that commission -- and David Reville can tell you about the letters we wrote and the meetings -- to insist that, number one, the advocacy not be centralized, that it not be a commission, that it be the responsibility of the communities, that all the commission did would be to facilitate and strengthen volunteer advocacy, a high priority among a number of our groups.
But what the commission was able to do was have some resources. It doesn't need to be $18 million, but there had to be some focal point of resource and some strategic planning, because what you really want is not only individual advocates, you need systemic advocacy. If your goal is to avoid spending a lot of money on every single person experiencing the same problem, you need to have a way to coordinate the information, the same way that ARCH preserves resources by really focusing on the priorities our community sets for us, and you'll hear a little bit about that tomorrow.
An Advocacy Commission is a way in which the broader community, including the families, can work together, outside government but with some support, to set those priorities that they think are most important for advocacy, so that we see advocacy going where it's really needed, to those people who don't have family and support.
Without some form of coordinating mechanism that can take the data that come in, that can look for the patterns -- you will find in the United States, for example, legislation requires every state to have a protection and advocacy office. Australia has just set one up. Alberta is looking at it, BC is looking, Nova Scotia is.
It's because they recognize that without some focal point that can take direction from the community and not from the government and that can listen and support volunteers -- volunteers are not free resources. I was at a consultation at a volunteer centre. It doesn't have to take a lot of money, it doesn't have to take a lot of bureaucracy, but it does have to take some commitment from the government and some resources. We think they are the best way for the government in the long run to save money and support families.
The Chair: Your time has elapsed. You certainly are an eloquent spokesman for this cause and I thank you for attending. We are recessing to 1:30.
Mrs Caplan: Before we recess, Mr Chairman, yesterday the Attorney General, in his opening statement, made reference to consultation, the fact that he was unaware of any time in the past when there had been statements on the record about consultation for the committee, and I have to reform part of the record. I would like to table Hansard from Wednesday, May 6, 1990, when in fact I made a long statement, but I will just very briefly give you one sentence:
"I've met with every major professional group directly affected by the recommendations and with many groups which, while not directly affected, have a stake in how the professions' legislation is framed. To date, there have been more than 350 meetings between ministry officials, individuals and groups since January 1989."
I put that on the record so that the Attorney General and the Minister of Health might know that consultation in fact is put on the record, and that my request for what they have done in the area of consultation is not an unreasonable request.
Mr Clement: You get a gold star.
Mrs Caplan: So I hope they'll reconsider and table with this committee what their consultation was before this legislation was tabled.
The committee recessed from 1202 to 1331.
ONTARIO ADVOCACY COMMISSION
The Chair: Our first presenter is Mr David Reville, chair of the Ontario Advocacy Commission.
Mr David Reville: Good afternoon. I am David Reville. I am chair of the Ontario Advocacy Commission. I am a psychiatric survivor.
Let me introduce some other commissioners: Pat Capponi, and Pat is a psychiatric survivor; Tony di Pede, and Tony is a person living with AIDS; Dr Bill Forbes, and Bill is a senior; Ms Joy Isaacs, and Joy has diabetes; Joanne Nother, and Joanne has MS; Mr Krishan Uppal, and Krishan is a senior; Kerry Wadman, and Kerry is deaf-blind.
A written brief has been submitted. It's called Advocacy: Now More Than Ever and I hope you've had a chance to take a look at that. We submitted that along with the companion document called Provincial Snapshot, which is a survey of issues and gaps in service that were brought to our attention by community groups across the province earlier in the commission's tenure.
I'll be speaking primarily to section 1. Section 1 repeals the Advocacy Act. But first I want to register the commission's opposition to other provisions of the bill.
We believe that the right to make one's own decisions is an essential right. That's why we strongly disagree with the government's decision to remove the option of a rights advice visit under the Health Care Consent Act.
We believe that rights advice must always be given by an independent rights adviser. That's why we strongly disagree with the government's decision to leave rights advice under the Substitute Decisions Act to the discretion of the public guardian and trustee. It's a conflict of interest.
I want to note tangentially that I received today a letter from the Attorney General that said no final decisions have been made to date on how this rights information is to be delivered. It strikes me as incredible that this decision has not yet been made when we're looking at the repeal of this legislation by the end of next month.
Commission rights advisers have been giving rights advice under the Mental Health Act to more than 600 people each month. How will these people get their rights advice once the commission is dismantled? If, as is rumoured, the Ministry of Health, through the minister, designates hospital employees as rights advisers, we see that as a conflict of interest. We are urging the government to amend its legislation to reinstate rights advice in the Health Care Consent Act and to ensure that rights advice is given by independent rights advisers under all legislation that requires it.
The commission has provided government with a proposal whereby independent rights advice can be delivered cost-effectively, and that proposal will be before your committee separately.
Let me return to section 1. It doesn't take long to say the words, "The Advocacy Act, 1992, is repealed." By rights it should take longer. It should take more than six words to dash hopes and shatter dreams. Decades of hopes and dreams preceded the passing of the Advocacy Act in 1992. That there was an Advocacy Act at all was a minor miracle, and that the Advocacy Act took the shape it did, well, now, that was a major miracle. The good guys had finally won.
I've been involved in the debate about what to do about vulnerable people for over 30 years and the debate never seems to change. There are three positions in the debate: Don't get involved, it's a private matter; that's position 1. If everybody is nice to everybody else, everything will be all right; that's the middle position. You've got to say whose side you're on and you should come in on the side of the vulnerable person; that's the third position and that's the position that won the day in December 1992.
Imagine, the Advocacy Act set up a commission whose job was to promote respect and autonomy. Imagine, the act required that the disability community choose nine of 13 commissioners. Imagine, the act required that the majority of the commissioners be people with disabilities and/or seniors. Imagine, the act said that community development strategies should be used. Imagine, the act recognized that systemic change was needed; what's more, it listed where systemic change was needed at governmental, legal, social, economic and institutional levels.
Imagine, the act got the language right; it got its power relations right; the verbs, the nouns, the concepts, the plain language are unique in legislation. Words like "contribute," "empowerment," "help," "promote," "respect," "dignity," "systemic" speak on their own behalf; "mutual aid," "community development" provide their own advocacy services.
The commission met for the first time in October 1994. We set out to put in place our response to abuse and marginalization. The commission's arrival on the scene, of course, didn't end the debate. In fact, in some ways, the mere fact of the commission intensified the debate and we heard the College of Physicians and Surgeons warning darkly of possible fatal delays in necessary treatment because of the requirement to tell patients what their rights were. Not one such delay has ever occurred. One politician bemoaned the fact that advocates were "literally interfering in the private lives of individuals." That was a strange allegation, given the fact that the commission's activities were frozen before it had hired a single advocate.
It was the rhythm of big-P politics that really swung the balance, however. A few short weeks after the act was proclaimed and the commission began delivering its first services, all the available forums were occupied by the élite debaters and the debate about disability was the same as always, position 1, position 2 and position 3. The winner of that debate was duly declared and that's why today we have a different list of words, thoughtfully provided by the government. We get to see these words peppering government news releases and salting the speeches of government members.
Here are the words the government wants us to use now: "intrusive," "adversarial," "bureaucratic," "expansive," "unnecessary," "biased" and "interfering." It's a shorter list. The government is doing more with less.
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In the debate about what society should be doing about vulnerable people, the government takes position 1: the don't get involved, it's a private matter position. The government wants us to rely on the kindness of strangers. The government wants us to trust our institutions to behave properly. The government wants us to trust it too. And we do not.
We continue to believe that there is a very particular role for government in ensuring that vulnerable people have advocates. Nine years ago, Father O'Sullivan described the advocacy environment in Ontario: Advocacy services were fragmented and inadequate. Much of the advocacy that was available was limited by conflicts of interest. Many people living in institutions had no advocacy at all. Training and standards weren't uniform. There was no coordination. Advocacy was underfunded.
Nine years later, all the problems that Father O'Sullivan identified are still there. What's changed is that the number of vulnerable people has increased. That's why we think government needs to stay in. That's why we do not agree that the government should get out.
We do not agree because we don't believe that abuse of people with disabilities is a private matter. We don't agree because we think that when somebody is beating up on your grandmother you should interfere. We don't agree because we think that you need somebody on your side when you're up against a big, impersonal institution, including a big, impersonal government. We do not agree because we don't think it's an accident that people with disabilities live in poverty, and we think that it's in nobody's interest to have people living in poverty and dependency. We don't agree that the government should be getting out of the advocacy business at a time when things have gotten worse and that many of the things that have gotten worse have gotten worse by the government's own hand.
We're not content to oppose; we want to propose as well. We have submitted Advocacy: Now More Than Ever. It's a brief that talks about vulnerability. It talks about what advocacy does and how it works, who advocates are. It tells the story of the commission. It explodes the mythology that's grown up around advocacy. It describes the environment in which people with disabilities find themselves. It says where the government fits in. It makes a proposal to support the interests of vulnerable people.
It's a simple proposal: The government should be funding a non-profit charitable corporation. That corporation should have three objects: community development, education and training, and systemic advocacy. The corporation should take a cross-disability approach to its work. The corporation should be governed by a board whose members are people with disabilities.
That's our proposal. It's informed by our experience and by our values. We think it's credible. The amount of money involved is $3 million. In fiscal terms that's a saving of $15 million. In human terms it's the least government should do.
We believe profoundly in advocacy because it's the way people take back control over their lives, because it's the way broken people repair themselves, because it's the way people can keep from getting broken in the first place, because it's the way communities care for each other.
We don't see ourselves as a special-interest group. Rather, we see ourselves as your brothers, your mothers and your friends. Anyone can become vulnerable. If we're lucky, becoming vulnerable involves nothing more complicated than waiting. We grow old. Our capabilities decline. Do we want to get pushed around when we're old? In that way we're all the same, vulnerable or waiting to become vulnerable. We're the same too in wanting as much control of our lives as possible, in wanting as much life as possible.
I have an opportunity actually to say thank you to the commissioners and the staff for your dedication and your friendship. I want to say thank you to thousands of people in the disability community. You were generous with your knowledge. You were inspiring in your courage. Thank you.
Mr Marchese: Mr Reville, perhaps you can just briefly tell us why the Advocacy Commission came to be, because I'm not sure that people have a good sense of what we have in the field already. Some people probably think we have a lot of advocates out there and that they're doing the job, and if we have that, why duplicate it with this commission, of course, that is bureaucratic, intrusive, as they say, and so on. Mr Bennett also argues that perhaps we should all become advocates, and that would be the solution. Could you respond to what there is there that is inadequate in terms of dealing with what you've been trying to do?
Mr Reville: The approach to advocacy on a systematic basis has been piecemeal. In the 1970s, a program called the adult protective service worker was established to deal with people being deinstitutionalized from homes for the developmentally challenged. That was one program established by a Conservative government. In the 1980s, advocacy appeared in psychiatric hospitals, those operated by the government, and that was advocacy for people with psychiatric disability in psychiatric hospitals.
There are programs like ARCH and ACE, which are specialty legal clinics which provide legal advocacy and non-legal advocacy to seniors or people with disabilities. I think people began to realize that advocacy is a solution to abuse and marginalization and isolation and neglect, and that what you had to do was take a systematic approach so that people could receive advocacy no matter what their disability was and no matter where they were located. So, for instance, a homeless person who has a disability -- and many indeed do -- could receive advocacy services on the street; they didn't have to be in an institution or in a community program. The point was that if you have a disability, if you have a chronic illness or you're elderly and frail, you're going to need some advocacy, and it should be available wherever you are and whatever your circumstances may be.
I think we should never overlook the fact that family and friends have always been advocates, from the beginning of time, but family and friends sometimes have limitations on what they know and what they can get access to. So if your mother is in a nursing home, maybe you just don't get access to that nursing home when you need it or maybe you don't get the answers you need. In that case, an advocate is going to work with you on behalf of you and your mother. That's what sometimes gets missed out in the discussion of advocacy.
Mrs Boyd: Can you talk a little bit about what you mean by the building of a cross-disability network and community development?
Mr Reville: I think it's really important -- and here again, the way we have structured services is part of the problem and government is part of the problem, and all those of us who have tried to be in government or want to be in government know that services are delivered in these kind of silos, and if you have MS there's a whole collection of service providers; if you have a psychiatric disability, you have another whole collection of service providers, and the disability community has organized itself that way as well. So you have not only service delivery associations like the CMHA, but you'll have a breakaway association of peer support like the consumer survivor groups that have been developing over the years.
What we have discovered very powerfully is that the issues are very similar no matter whether you have psychiatric disability, as I do, or whether you're deaf and blind, as Kerry is: that you struggle with poverty, you struggle with isolation, it's hard to get a job, sometimes you feel discrimination. These issues are similar no matter what your disability is. Or if in fact you have simply become elderly and frail, you have the same kinds of problems. I think the services should be delivered in a more cross-disability way, and I think the advocacy needs to happen that way too. That's what the commissioners came to feel extremely strongly as we learned from each other and from the communities with whom we spoke.
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Mr Clement: I'll try to keep as brief as I can for my colleagues to have a say as well. Thank you very much, Mr Reville, for your presentation. You're always very thoughtful and you've given us a lot to think about, and I thank you for that.
I did want to come back to what Mr Marchese alluded to, because I'm trying to get at the foundation of this debate that has occurred, and Father O'Sullivan's report really is a touchstone of that. I mentioned earlier this morning about how he identified the need for all Ontarians to have that moral responsibility, and it is a moral responsibility, to be advocates. I expressed my concern that the tendency is that when government gets involved in these things, people feel it's all right to abdicate their responsibility because government's looking after it. I don't want us to get into that trap again as a society. I think we should be partaking of our moral responsibilities to vulnerable people.
Mr Reville: I agree with that.
Mr Clement: I guess my worry is, and I want your response to this, that by creating this hierarchy of rights advocates that can be separate and apart from friends and family, we are extracting empowerment away from the community and on to this artificial level. Am I barking up the wrong tree on this?
Mr Reville: I think you are barking up the wrong tree. We should send you our paper on volunteer advocacy, because the commission felt very strongly that it would never, ever have enough resources to provide all the advocacy that is needed, and that in fact the best advocate you ever get is somebody who loves you. We believe that anybody can be an advocate, and we don't want to discourage that.
I should point out that before Father O'Sullivan wrote his report, families and friends were doing advocacy, and they still are, and I don't think the commission supplanted one family or friend advocate, nor should it ever.
Mr Clement: Let me turn to one mundane question from the moral question. The commission of which you are the chair has spent $5.1 million providing rights advice over the last little while. You're suggesting that the replacement commission would spend $3 million doing rights advice, systemic --
Mr Reville: No, I didn't say that exactly.
Mr Clement: Well, I'm trying to figure out how we can get from $5 million to $3 million when you're expanding the role of the commission.
Mr Reville: First of all, the proposal I have made to you today does not include a rights advice proposal. I indicated that was a separate proposal. That's costed at about $1.7 million, and you'll be receiving that shortly.
The mandate of a non-profit charitable corporation such as I have described is much narrower than the mandate of the commission. The commission had a very broad mandate which involved individual advocacy across the province, which is where the big money is. Our strategy in that respect, although we didn't get to implement it, was to deliver individual advocacy in two ways. The way that we thought was the most effective would be to have community groups deliver advocacy locally, and to enable that to occur, we were going to provide both financial and other resources to community groups so they could employ their own advocates.
We were also aware that in some communities the development had not proceeded to a stage where hiring advocates was going to be possible, so in that respect we were going to hire some advocates directly. In fact, we had a plan to hire 50 advocates, which of course would turn out to be about seven per region. If you'll be off to Thunder Bay, that part of Ontario is bigger than most countries. Seven advocates doesn't go very far in territory like that, as we discovered as we travelled the north. So that was our strategy and that's where the big money is.
The corporation that I have described would be cost-effective because what it would be providing to those community groups would be resources in terms of education and training, and then it would be hoped that some members of those community groups would want to be volunteer advocates, utilizing the training that the corporation would then provide, and other kinds of organizational support. "Community development" is the way we generally describe that approach.
Mr Bernard Grandmaître (Ottawa East): Mr Reville, in your opening remarks you said that you come here to not only oppose but to propose a new corporation. The intention of creating a new corporation, as far as I'm concerned, is very valid. I was talking to a member of the government at noon, in fact, and he told me that your new proposal, your new proposed corporation, would save close to $15 million a year.
You know what the government is trying to do is to cut back and save dollars, more and more dollars, from you and just about every other service provider in the province of Ontario, to do whatever they please with those dollars, those savings.
This new corporation of yours, will it be able to provide better services or as many services as the present commission?
Mr Reville: No. It clearly would be $15 million light in the amount of service that it could provide. As we were trying to figure out how to make a proposal that might appeal to the government, which has a fiscal plan, we were trying to think of how much money it would take to enhance the work of the volunteers that Mr Clement is describing and still have an adequate amount of money to do that job. That was the sum we came up with. Mr Grandmaître, I hate to tell you that what I believe is going to happen is that the advocacy effort funded by this government is going to be far smaller than before the Advocacy Commission was dreamed of. In fact, what I think is going to happen is you're going to see a collapsing and a shrinking of the activities that the Ministry of Citizenship used to undertake.
Mr Grandmaître: And it won't be as effective.
Mr Reville: Well, it will be hardly there at all. In fact, the government has always had several activity centres around advocacy. I think you're going to see those collapsed and diminished, the $18 million the commission would have had as its budget will disappear, and that the existing effort of the government will shrink as well. I think you'll see a couple of less SMG-1s in the establishment of the bureaucracy and a much, much diminished advocacy brief being carried by government, and that's a shame. This is not the time to be doing that.
Mr Grandmaître: You're also qualified as a bunch of bureaucrats spending $18 million.
Mr Reville: Yes. That was very hurtful. You should see me carrying the boxes around that place.
Mr Grandmaître: What are your thoughts on that kind of comment from the minister?
Mr Reville: It's a political shot. Obviously, if you want to get somebody mad at somebody, you call them a bureaucrat these days. There isn't anything bureaucratic about the commission. Our rights advisers work out of their houses. Their offices are on their belts. There are no bricks and mortar. When we have a contentious issues meeting at the commission, there aren't 40 people at it, I can tell you.
Mrs Caplan: Is there any time left?
The Chair: You've got one minute. I'll time you.
Mr Reville: It's good to see you, Mrs Caplan.
Mrs Caplan: Nice to see you, David. You know that while there have been things we've agreed with over the years, there have also been things we've disagreed with.
Mr Reville: It's too bad this is one of them.
Mrs Caplan: We know this government is intent on dismantling the commission as it exists, and the advice you've given today as to other options will prove helpful as they go through their focus groups and stuff.
Mr Reville: I hope so.
Mrs Caplan: Have you been involved with the --
Mr Reville: Yes. We were very happy to share our views. We thought the approach the government was taking was extremely narrow, boring and old-fashioned.
Mrs Caplan: As a former member of this House, no one would ever have criticized you for not being outspoken.
Mr Reville: That would be good.
Mrs Caplan: It's nice to see that your reputation is intact.
Mr Reville: Also, if I may say, it's nice to know that you believe government should do something about advocacy, and I hope you get a chance to tell the committee what you think that is.
The Chair: Thank you. We'll be receiving your proposal and the committee will consider it, I assume.
Mr Reville: I hope you do have it.
The Chair: I think we do, yes.
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MARILYN HEINTZ
Mrs Marilyn Heintz: Good afternoon, members of the committee. I am Marilyn Heintz, and I'm here as an advocate and as a person who strongly believes that section 1 of this bill should be abolished. As far as I am concerned, I would like to inform you that what you are doing is putting the handicapped back instead of forward in society. That is what you are doing by bringing in this particular part of Bill 19.
My friends have told me that when they were growing up, they were always kept hidden in their homes; you never saw them in their community. Some of my friends were sterilized without having a choice. There were other choices where they wanted to live and work. I wish you would consider the handicapped and leave this act alone.
As the Advocacy Act states: "Being deprived of the freedom to make choices and decisions is one thing. Wilful exploitation, neglect and abuse of vulnerable and disabled persons is another. Yet for some elderly and disabled persons, that too is an everyday reality." Others, while quite capable of making their own choices and decisions, have been denied the opportunity to do so because they are unable to communicate in ways that are easily understood by others.
The main purpose of this Advocacy Act is to contribute to the empowerment of vulnerable persons and to promote respect of their rights, freedoms, autonomy and dignity. Although the word "empowerment" has come to be associated with a variety of movements, it means different things to different people. Some view it as a process, others as a state of mind.
Empowerment is about changing attitudes. If people with disabilities are to become empowered, society as a whole, and those who treat and care for them in particular, must begin to focus on their capabilities rather than their deficits. The only words I would change are "capabilities" to "abilities," and "deficits" to "disabilities."
If vulnerable people are to have control over their own lives, they must know what their rights and entitlements are. They must have real options and alternatives; otherwise choice is meaningless. What are our rights if you pass Bill 19? Can you guarantee that we will not lose our rights? I do not believe that is what you intend to do. If the handicapped do not have a family to take responsibility for them, who will do it?
Thank you for giving me the opportunity to appear before your committee. If I get a question I can't answer, I could probably find out who the members are and give you the answer eventually.
The Chair: Let's just see if you can answer them and how detailed they'll be.
Mrs Johns: Thank you for making your presentation today. A number of different issues have come up with respect to Bill 19. You focused on section 1 right now as you were talking. I want to deal with the consent to treatment. I know that's probably not an issue you've read, but I want to ask you, as you're dealing with People First -- I see that you're the president of People First.
Mrs Heintz: I am in Burlington, but People First has been disbanded in Burlington. I do talk with People First of Toronto and communicate with them every so often.
Mrs Johns: I want to talk about people receiving rights: their ability to receive rights and how they receive rights. I know that with People First that is an issue that's important to be able to talk to people about. Have you got any vision about how rights were provided in the past, how well that process worked, and any recommendations for what we should do in the future?
Mrs Heintz: No, I don't. Would you like me to find the answer?
Mrs Johns: No, that's okay. People First may be coming in at a different time, so I'll ask again at another time, if that's okay.
Mr David Ramsay (Timiskaming): Thank you, Marilyn, for coming. Could you relate to us how the establishment of the Advocacy Commission influenced your life and had impact on your activities? How did it on a day-to-day basis do that?
Mrs Heintz: I have a mother who's in a nursing home in Milton and I can't get to see her. But every so often the Advocacy Commission used to send me interesting issues. They sent me a paper about this committee coming up and that's why I answered it. I thought it's important for me to tell my story to you people.
Mr Grandmaître: How did you get involved with People First?
Mrs Heintz: When I first got married, my husband and I went to a conference in Toronto, and we got to know it through there. I worked with the handicapped and ARC Industries in Burlington, and I became president of People First Burlington until it folded.
Mr Grandmaître: How did the Advocacy Act help you personally?
Mrs Heintz: I find it gives me --
Mr Grandmaître: Security?
Mrs Heintz: Yes, it does.
Mrs Boyd: In the paper you've attached to your presentation, Marilyn, you talk a bit about having been a fortunate person in your circumstances because you had parents who were good advocates and who worked on your behalf. But many of the people who are members of People First either did not know their parents because they were institutionalized, often, from birth or had foster parents or did not have that kind of support. You've talked to a lot of these folks and you know that their issues are even more serious than the ones you've talked to us about in terms of their feeling helpless and feeling as though they weren't being empowered to make decisions themselves.
I know it's not appropriate for you to talk about any particular story that would be identifiable, but I wonder if you'd talk a little about how this whole notion of advocacy and rights advice within the group of people you work with in People First actually impacts on people's lives. What would be different for people if there were advocates on whom they could call if they felt they were being mistreated? What would be different if, when they were in a medical situation, they could call upon someone to explain exactly what the decision was going to be about?
Mrs Heintz: As you just said, Marion, about explaining, I think it's good that we have advocates. I had a girlfriend -- and I talked to Mr Doyle about this a couple of months ago -- who was critically ill. She's diabetic, and she had taken water pills; it reversed the reaction and she ended up with congestive heart failure. She's all right today, thank heavens, but I coached her as an advocate. I explained to her what the government is intending to do with this bill, because she didn't understand.
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Mrs Boyd: So that information flow is a big part of advocacy work.
Mrs Heintz: Yes.
Mrs Boyd: Particularly if you're faced with a decision, it's important to know what your rights are. Very often, if you're a vulnerable person, you may be presented with choices, but they may be presented in such a way that you don't get a sense that you have the right to choose something different from what the person wants you to choose.
Mrs Heintz: Yes, exactly.
Mrs Boyd: We find that's true a lot, particularly for people who are in institutions or are in workplaces that are specifically geared to work with those who have disabilities -- may be very kindly met, but also have pressures on them.
One of the best examples I can remember is a situation in a vocational rehab workshop. Although the idea was to get people job-ready to go out in the world, because the workshop had to make a certain amount of profit there was a bit of a conflict there. People weren't really understanding that they had the right to leave; they were being told how important they were to raising the money. Does that happen a lot?
Mrs Heintz: Yes, it does.
Mrs Boyd: I thought perhaps it did.
Mr Marchese: Mrs Heintz, I want to make a quick point that maybe you have a reaction to. Mr Reville talked about a proposal that would only cost $3 million as opposed to --
Mrs Heintz: I have talked to him about that, briefly over the phone.
Mr Marchese: He said the objectives of this non-profit corporation would be to do community development, to do education and training, and also to deal with systemic problems. If this government can't even accept this proposal as a very minimal proposal to deal with issues that otherwise, in my view, would never be dealt with, we're not really doing very much out there, because no one out there is going to take on the job overall or generally to do these three things: community development, education and training, systemic problems. Do you have a sense of that?
Mrs Heintz: I agree with what you said. I talked to David briefly yesterday afternoon about this plan, and as a disabled advocate, I wholeheartedly support it. At least, you're keeping the people out of the institutions then putting them back in the institutions.
Mr Gary L. Leadston (Kitchener-Wilmot): Marilyn, I appreciate you coming out this afternoon.
Mrs Heintz: I came on my own. I was supposed to be with a bunch of advocates from Burlington, but they chickened out.
Mr Leadston: You're doing a remarkable job, and thank you very much for coming. One thing I'm rather puzzled about in your comments. You said your husband and you were unable to visit your mother, who's in a nursing home. Could you clarify?
Mrs Heintz: Transportation. My mom is in Milton. I went with my dad last Sunday, and that's the only way I could get to and from Milton.
Mr Leadston: I see. It's the obstacle of being transported --
Mrs Heintz: I'd probably have to go from Burlington to Toronto and then backtrack to Milton to get to see her.
Mr Leadston: Thanks for clarifying that.
Mrs Boyd: There are a number of other groups from People First and from PUSH -- a "sister" group that deals with similar matters but has a different kind of focus -- that will be coming in front of us. The idea, I gather, of People First is to offer mutual support to one another to really regard yourselves as independent people, people who can make your own choices and so on. That sort of self-advocacy is hard to learn, isn't it, when you haven't had an example of it?
Mrs Heintz: Yes.
Mrs Boyd: So the idea of this non-profit corporation that would offer some of the community development support for that would be very important. You said that your Burlington group disbanded.
Mrs Heintz: Yes, it did.
Mrs Boyd: Did you have lack of support?
Mrs Heintz: Yes, we did.
Mrs Boyd: That was your problem?
Mrs Heintz: We talked about the Education Act at one time, and we had about 10 members, and it just folded from there. We hope to get it started up again. I work with a girlfriend who's critically ill, who's got diabetes. Now I help her out. I go as an advocate to her group.
Mrs Boyd: But for people who have disabilities, it really is important to have some way in which they can get that ongoing support and encouragement to keep up the work, because sometimes it feels very lonely and isolating, doesn't it, just to be talking to yourselves?
Mrs Heintz: Yes.
The Chair: If there are no other questions, Mrs Heintz, I thank you for taking the trouble to attend before us.
NIAGARA MENTAL HEALTH SURVIVORS NETWORK
The Chair: The Niagara Mental Health Survivors Network, Angela Browne.
Ms Angela Browne: I want to thank the standing committee on administration of justice for providing me with an opportunity to speak to you today. I feel particularly honoured to be your guest today as your government struggles with a number of very vital and very complex issues and while its resources are becoming increasingly limited. You've got a tough role and I don't envy you.
My name is Angela Browne. I'm speaking as the executive director of the Niagara Mental Health Survivors Network. We're a voluntary group of people who have received mental health treatment and their families. Our membership includes approximately 80 persons who have been treated in the past for mental health problems and about 25 others who are family members or individuals who just have an interest in what we do.
In the past three years, the organization has transformed itself from a self-help, peer support focus to one that seeks to address solutions in three primary areas: economic development, where we try to do true economic development to form businesses that are actually going to become self-sufficient and pay people and get them off assistance; training and knowledge development, where people can find out more about different issues -- for example, the law that's before us -- and can figure out what's happening and what it means, that sort of thing; and human rights advocacy. We do a lot of this on an individual basis, where people come in, they have trouble with income maintenance or they have trouble with housing. We work with them, get it straightened up, help them get back.
So in the past two years, much of our work has been focused on conducting an employment barriers needs assessment and reporting on the proposed federal social security reforms and their potential impact on the people we work with and their families. Particularly, as you've seen, less government dollars come down from the feds. How are we going to deal with it at the provincial level?
In the last year or so, we provided input into a diversity of topics concerning our membership, ranging from systemic advocacy, community economic development and mental health reform to recent proposals for a new income support program for seniors and people with disabilities. We have an interest in this particular bill, given our membership's interest in these important issues and how they impact on human rights, how they impact on our ability to maintain the right to choose and how they impact on our move to self-determination.
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First, I want to state that in our membership we have many people who can be considered at times vulnerable, and this is within the context of your legislation, Bill 19. Second, many of these vulnerable people lack even the most basic information about their rights. They're frequently calling in and asking me: "What do I do? What is this about? What does this letter mean?" They can read it, but they don't know what it means, what to do about it. There's a sense that they need somebody there to work with them work through things. Third, this vulnerability is often compounded by social, economic and related mental health issues that make it difficult for people with mental health conditions to find out about, use and assert their rights.
In this presentation today, I want to touch upon some of the specifics of the bill, but most of all propose alternatives to ensure that vulnerable people could learn about and assert their self-determination, albeit very much in a cost-effective manner.
The first part of my comments relates to the repeal of the Advocacy Act, 1992, which will result in disbanding of the commission and removal of rights adviser and advocate portions of both the Substitute Decisions Act and the Consent to Treatment Act, now the Health Care Consent Act, I presume. Certainly, the concept of advocacy is not new to government. In response to allegations of deaths and rights violations taking place inside the provincial psychiatric institutes, the then provincial government moved quickly to institute the Psychiatric Patient Advocate Office under the Ministry of Health. With an aging population, there are increasing concerns about the quality of care older people are receiving in nursing homes, and in many cases in their families, who are often raising children themselves and paying down a mortgage. These families are unprepared for the responsibility yet feel obligated to maintain the elderly family members in the community instead of a nursing home.
With the push towards deinstitutionalization, there's an increasing amount of pressure on families and community-based services to provide the supports necessary to meet the basic needs of vulnerable people while attempting to encourage self-determination at the same time. With these growing pressures, the idea of non-legal advocacy continued to receive formal recognition from all three political parties and all three successions of government.
In 1986, the late Father Sean O'Sullivan was appointed to conduct a review of independent advocacy for vulnerable adults living in institutional care settings in the community. The then Attorney General appointed him to review that and to come up with some recommendations for an independent system of advocacy. A few years later an inquest was called into the death of Joseph Kendall, a resident at Cedar Glen Boarding Home, which was located in Uptergrove, a tiny community near Barrie, Ontario. As a result of this inquest, a public inquiry into regulated residential accommodations similar to Cedar Glen was called, and headed by Professor Ernie Lightman.
Problems identified as issues with Cedar Glen Boarding Home were found to be widespread, yet these homes continued to house our most vulnerable people in the community. As the horrors of Cedar Glen were investigated, our community learned about allegations against one of its own boarding homes by two former employees. Through informal channels, I learned that a man was suffering the early stages of a heart attack and that he approached the owners for help in getting him to the hospital. They told him to take a bus. What happened? Shortly thereafter I heard that the guy later died in hospital of congestive heart failure. He was only in his early 50s. That's not terribly old. Eventually, the former government passed Bill 74, the Advocacy Act, which established a commission to address these issues at both an individual and systemic level, these issues which still continue today.
Because of the vulnerability of people these acts deal with, it is the position of our members that some form of rights advice remain intact to ensure the rights of vulnerable people will stay protected. We have found through our own community-based consultations that most of the people we work with are unaware of their rights. Many of them don't even know that they can work when they're on disability. Many of them don't know their rights if they're a tenant, don't know their rights if they're in a boarding house.
The effect of the Health Care Consent Act and its predecessor, the Consent to Treatment Act, is that they facilitate treatment processes while attempting to strike a balance of rights protection. Our question about this would be that if rights advisers other than those already mandated under the Mental Health Act are not available, the vulnerable people, not knowing their rights, can become susceptible to certain kinds of abuse. They're not going to know the act. They haven't read it. They don't do the work that I do. So I don't know how they're going to figure out about what they can do if some doctor tells them they're not capable of making a decision.
Recognizing the financial position of the province, we probably would recommend against building another $18-million Advocacy Commission. We don't think that's a cost-effective way of doing it. But instead we'd recommend a closer examination of how existing funded and volunteer structures could be better coordinated to do this type of work. For example, there's already a structure that remains in place in the 10 provincial psychiatric hospitals. There's a rights adviser program for provincial psychiatric inmates facing certification. There's community legal clinics that provide legal education and support to vulnerable people facing evictions, Small Claims Court and other civil matters.
The Niagara Mental Health Survivors Network has provided assistance over the years to a number of individuals who had difficulty accessing services they need. We've also been around to provide non-legal advocacy services: take them to the doctor's, take them to the various places, make sure they could get what they need and so forth. For example, we might help members write letters to help them access their psychiatric records. We might accompany them to a hearing. We also support people who are tenants in boarding homes and so forth. We also maintain an up-to-date library on the latest legislation impacting on our members as well as various resources available to help them deal with problems.
We anticipate that an effective coordination of these existing resources would not only be relatively inexpensive, locally driven and flexible, according to how people's needs change, but would provide an excellent source for volunteer as well as paid work experience. While we do support volunteer advocacy, we take the position that there must be some paid staff to do some of the coordination function, but nowhere near where we're going to hire 5,000 people.
Our specific comments on Bill 19:
(1) We're particularly pleased with the clear definition of "informed consent." Finally somebody decided to put this on paper and say this is it. However, if a health care practitioner doesn't follow this procedure, are there any penalties? The difficulty mental health survivors often encounter is a lack of informed consent when they're given psychiatric care. Very few survivors are ever given full information on the risks and side effects of medication and other treatments. As a result, we are finding people who believe they might never have never consented if they'd actually known what the side effects of the drugs were.
(2) We support the presumption of capacity to grant a power of attorney. This makes it easier for individuals who may have very minimal capacity to make some self-determination. We also support a person deemed incapable continuing to have some role in his or her care throughout the capacity determination process and appointment process and while the substitute decision-makers make a decision, so that they could express what they need or what they feel they want and the person would have to kind of listen to them as part of their process for making decisions.
(3) We support placing some responsibility on the part of the person refusing or consenting to treatment on another person's behalf to ensure that certain guidelines are maintained to ensure the individual's preferences are respected where they're known. We also support having a clear definition of "best interests," which includes the requirement of taking into consideration a person's wishes they had expressed before they became incompetent, their values and any current expressed wishes where they could be ascertained.
(4) We support the notion that in many instances it will be made easier for physicians to obtain the required consent from the patient to provide needed services. This gives a physician flexibility, and that's fine. However, when a patient is giving their consent, this should be explained to them to ensure that the patient understands what the scope of their consent they give entails and what the physician can do to them as a result of giving them that consent.
(5) We have some concern about the section outlining items that are not deemed to be treatment for the purposes of the act. There are a lot of openings here. This opens the doors to individuals being subjected to various tests, assessments and examinations as well as admission to a hospital or other facility. Additional procedures that will no longer be deemed to be treatments could be included in the regulations. This provides a lot of discretion. Our concern is that only procedures deemed to be treatment will require informed consent prior to carrying them out, other than in emergency situations. What about procedures not deemed to be treatment? Are people at risk of receiving unwanted medical intervention of any kind? Many types of examination can be considered invasive by the individual, regardless of no ill harm intended.
(6) The new act permits substitute decision-makers to consent to the use of shock as aversive conditioning. People with developmental handicaps have been protesting against this therapy for years. We feel there are plenty of alternatives to this type of therapy. Permitting substitute decision-makers to consent to this on another's behalf may encourage the use of the treatment beyond what is considered necessary. I see that as a step back, and I think what we need to do instead is maybe to explore some of the alternatives first with the parents and with the people who are dealing with people with developmental handicaps and perhaps require that they utilize these channels first before they go into aversive conditioning.
We are concerned about what appear to be increased powers given to practitioners in administering treatment under certain circumstances. The act clearly outlines the criteria for decision-making for a substitute decision-maker. If a practitioner believes that the substitute decision-maker did not follow this procedure -- which may be difficult to tell; it's mostly a matter of thought process -- there are always ways the refusal of the substitute decision-maker can be overruled.
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We feel this power should only be permissible in the event of an emergency. In emergencies you can always have flexibility because somebody's going to need the help now, so you've got to give it to them. But the new act permits the physician to apply to the board regarding a substitute decision-maker's refusal even in non-emergency situations. If they feel the substitute decision-maker did not follow a decision-making process, which is again difficult to tell, the substitute decision-maker may have lost his right to act on the other's behalf.
That's not fair. I think there have got to be a few more guidelines there. There's got to be something that's not as arbitrary to determine this so that people can find out what's going on and make sure the people are following the directions. I can understand and appreciate why you might want to have that in there, but at the same time we want to make sure it doesn't move too far the other way, so in case somebody really is following the person's directions, that we're not going to have his rights overruled.
Protection from liability for practitioners and substitute decision-makers is extended in the proposed act. Before, the protection only applied to administration of treatments, from what I understand. Now it applies to decisions regarding admission of the person deemed incapable to a hospital or facility. Grounds for such a decision are not clearly established in the act, whereas a person could be forcibly confined, under the Mental Health Act, for 72 hours for an assessment if they're believed to be a danger to themselves or others. Do the same criteria apply under these circumstances? Maybe a clarification about what circumstances this can occur under.
We have concerns that in some cases one board member may constitute a quorum for the purposes of administering the act. I guess people who are experienced or have specific skills or something can act alone. In addition, there are proposed changes that will permit practitioners who may have had that person they are dealing with as a client or a patient five years ago or more than five years ago -- there's a problem with that. There is still perception, and perception is reality here, if there could be a conflict of interest. We feel that the person needs to make the decision at arm's length and that there needs to be more than one body there hearing it. There needs to be more than one set of ears listening to it. The traditional quorum of three is fine.
We also like the mix of people, so that you have some expert and some non-expert people. It gives a good mix, a good representation from, say, the psychiatric, the legal community and laypersons. Besides that, it's cheaper too when you have the laypersons because you don't have to pay them as much to come in.
In summary, our organization favours an approach that supports self-determination, maximizes choices for the individual and gives less power to practitioners to impose treatments to an individual that he may not want. Please know that to psychiatric survivors, imposed treatments are a major issue with the group. We believe that any piece of legislation or government policy that makes it easier for physicians or psychiatrists to force treatments on more people -- some people find this frightening and intimidating.
What we find is that if treatment is given voluntarily and full, informed consent is given, people are going to comply with their treatment. They're to be going to be working with the doctors. But if it's brought on to them forcibly, they're going to be less likely wanting to work with the doctors, so you're going to have more problems with compliance that way. They'll find every way they can to fight it, and that's no good. That's no good. It's not conducive to the person's wellness and not conducive to the doctor or anybody.
Conversely, where treatment is cooperative, where people give full, informed consent, they have a choice, and whether through themselves or through a substitute decision-maker, they would be able to have a good relationship and be able to maximize their health and maximize their options.
Thank you for allowing us this opportunity to provide our comments on this bill. We open the floor to any of your questions.
Mrs Caplan: Thank you for an excellent brief. It's nice to see you again. You were out in Niagara when we were there on Bill 26.
Ms Browne: Oh, yes. I get around.
Mrs Caplan: You have raised an issue that we haven't had raised before: the issue of protection from liability for both practitioners and substitute decision-makers. No one's raised that before the committee and it's something that I have a concern about. On the one hand, people who act as assessors or evaluators under the bill have no obligation to tell a person when they've been deemed incapable, and treatment can occur and they are free from any liability. In other words, you can't take them to court if later on you find that they acted in a way that was contrary to your wishes. You can't argue, "I was never told." I just think that's fundamentally wrong.
I thank you for raising that because I'm not sure people understand fully the implications of that. You might want to go into that, just in the few minutes we have, a little bit more as to how you see that working.
Ms Browne: Yes. There is a legal implication to that. You're dealing also with Charter of Rights issues. Some of the stuff could be challenged under the Charter of Rights. You would like to make sure that people are informed of what is happening and that they're informed of their rights. Removing the rights advice portion of this creates problems. It doesn't have to be through an advocacy commission. It could be something similar to the rights adviser programs in psychiatric hospitals.
Mrs Caplan: It's interesting that you mention that, because of course the psychiatric hospitals are covered by the Mental Health Act and they have rights advisers and advocates.
Ms Browne: Yes.
Mrs Caplan: That's the Psychiatric Patient Advocate Office. It's been existing now for a number of years, we heard 20 years. They don't have jurisdiction over the community hospitals, and this bill doesn't give them that jurisdiction.
Ms Browne: No. Even the psychiatric courts.
Mrs Caplan: So people who are in a psychiatric hospital have different rights than people in psych programs in general hospitals. I think that's an important distinction.
I agree with you when you say that we can see a new model for advocacy services and that it doesn't have to be as expensive.
Ms Browne: A lot cheaper.
Mrs Caplan: Would you like to tell us how you see that working?
Ms Browne: Yes. You see, there are advocacy services already taking place at the community levels. They're funded by the government, they're funded by the United Way, they're self-funded; there are various ways. Some of them are just volunteer groups. But find a way to tap into them; find out what's going on. Perhaps there could be a way of coordinating these services so that they could be better delivered, and more effectively.
Mrs Caplan: I think the coordination is key, but I also think some quality standards to make sure that the training is consistent.
Ms Browne: Yes. Some kind of training to make sure that the person who's going to be your rights advisor knows what they're advising people, to make sure they know the law, to make sure they know how to deal with the people. You have to have minimum standards and minimum qualifications there. You can't just have anybody go in and do that.
Mrs Caplan: It's coordination that's the key.
Ms Browne: Yes.
Mrs Caplan: I just want to thank you for a thoughtful brief and also for raising the issue about the fact that people who find someone incapable and consent to the treatment on their behalf, both the provider of the treatment and the persons who consented on the person's behalf, cannot be challenged. Under circumstances, if you're going to give that protection to them, which in some cases may be justified --
Ms Browne: Very much so.
Mrs Caplan: I'm not saying it's not justified; the concern I have is that at least they should have the obligation to let the person know that he has been found incapable and that he has a right to appeal that decision.
Ms Browne: Yes, exactly. Particularly in the event of an emergency, you want to have them protected. You don't want to have them in a situation where they're risking a lawsuit because they're treating somebody. They have to have that protection. I'm not saying to remove the protection. What I'm saying is, clarify it; make sure the person knows what's going on; make sure the person knows what he can do to challenge it if he felt he needed to challenge it.
Most of the time -- they had studies; they had lots of studies done where they did that with psychiatric patients -- very few of them ever challenged their commitment. Most of them just basically went along with it. So putting something like that in place is not going to turn into a big, horrendous, expensive, bureaucratic nightmare. I'm sure it won't. I'm sure that this small change will do a lot of good for the people.
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Mr Marchese: Ms Browne, I'm one of those who believe that what this government has done with respect to the repealing of the Advocacy Act is wrong and irresponsible. I really believe that if they felt $18 million was just too much, they could have cut that down and dealt with some of the concerns they might have had in that way, as opposed to simply repealing it. Having nothing in its place and looking at what they might do later on, after they have repealed it, I think is just reprehensible.
Mr Reville said that he has proposed a $3-million non-profit corporation that would deal with three objectives: that is, doing community development, education and training and also dealing with systemic kinds of issues, which the commission started to do and would have dealt with but in this proposal obviously would be --
Ms Browne: Would be repealed, yes.
Mr Marchese: -- in a smaller kind of form.
My sense is that this would provide the coordination that is necessary and that it would provide presumably the kinds of quality standards that Mrs Caplan is getting at. That's what they would have dealt with with the commission; this is what they would be doing. Is this something that you agree with, or do you have suggestions other than that?
Ms Browne: I feel uncomfortable with anything centralized. I sort of get scared because it smacks of bureaucracy. I like things local, and then you kind of work yourself in the grass roots. That way, when you have a local determination, you're better off and you're dealing with the folks who are already doing it in the community. Many times, if you have a provincial corporation, it might be nice to have everything done there, all the standards done there, all the training done there, but the problem is that many times the people who are already doing it in the community are being missed out, you don't know what's going on and you're not tying those pieces together when you have that. So this is why I think it should come from the community. I believe there are some very effective ways that can be done.
Mr Marchese: I know Mr Johnson agrees with you, but I have some questions about that. Part of the problem is that when you don't coordinate these services, everybody's doing their own thing. This government is providing much less money than ever before, which means they have a lot less to do.
Ms Browne: Obviously.
Mr Marchese: The people on that commission came from the community. It's not as if these people are abstractions. They come from the very services you're talking about, so it's not as if we're operating in a vacuum.
If you're not doing that and you have a lot less money, who coordinates that? The various little agencies? Or do you just talk to them, saying, "Please do that"? Or what kind of direction would you give to all these little groups across the province?
Ms Browne: The thing is, if you coordinate it provincially, you're still not looking after local needs. Different locales have different needs, different ways of doing things. Niagara might want to have more systemic advocacy; there might be something dealing with the nursing homes scene, whereas in Toronto it's more important for people to know the psychiatric rights and send the rights advisers up. There need to be some assessments done locally, and figure out where it does. It would be funded provincially in terms of funding coordination, but in terms of the actual work, where people are determining what's needed, how the agencies work together --
Mrs Boyd: But you're seeing it on a cross-disability basis rather than just --
Ms Browne: Yes, and seniors as well.
Mrs Boyd: Rather than all the separated advocacy work.
Ms Browne: Yes, it would have to be a cross-disability of some sort. If you start going with just the psychiatric, you're going to end up with what she was bringing up about the PPAO and how the psychiatric survivors get help in the hospitals. But if your mother goes in the hospital with Alzheimer's, she doesn't have the same rights advice as someone in the Queen Street Mental Health Centre, and that disparity needs to be addressed; not the other way around, but we need to have the rights given to your mother in the nursing home too.
Mr Tilson: I can't believe that you won't get a call from the ministry with respect to some of the suggestions you've made, particularly your comment in your introductory remarks about the use of volunteer groups, where you recommend a close examination of how existing funded and volunteer structures can be better coordinated for this type of work.
I guess this is following along the line of one of the earlier questions, but just on the issue of age -- our population is getting older. In fact, some report just came out and talked about how the baby-boomers are getting fatter and gosh knows what all. It is an issue that we certainly need to anticipate in the years ahead, that we're going to have an older population -- just on that topic alone.
The main comment you made that interested me was that everyone does have different needs, yet we've only got so many resources to do these things, and we're going to count on volunteer groups. So I certainly encourage you to keep going with the message that you've recommended to make use of these volunteer groups.
The question I have is just on that topic. Your organization is basically a volunteer group?
Ms Browne: The thing is, once in a while we do get one paid person -- me. But I think there should be at least a couple of people paid. The thing is, it's very hard to coordinate volunteers who are just volunteers. It was tried and it doesn't work with our group. In some groups they might have been able to do that. It really depends on the type of group, the type of cultural environment you have, whatever.
Mr Tilson: You indicate that there are a number of volunteer groups across the province that you communicate with.
Ms Browne: We get called upon. We get calls from various groups, we get calls from the hospitals, we get calls from other local groups, asking us to look into certain situations, and we do. Look, my time is valuable too and there has to be some way of being able to balance it off. Yes, we do need the volunteers and we've got to develop the volunteers, because basically, if we pay everybody, our treasury will be broke. We don't have the money in the treasury. But when we pay some people who are going to be effectively doing a lot of the complex matters and training the volunteers to do some of the things where people just need somebody to be by their side when they're doing something, then these things could be effectively coordinated in these ways.
Mr Tilson: Keep up the good work. Thank you.
Mrs Johns: I wanted to ask you about section 9 in your report. That's about the one-person boards that we were talking about.
Ms Browne: Oh, yes. I saw you nodding your head when I was saying that.
Mrs Johns: Well, you make some very good points. One of the reasons we came to a one-person board was the timeliness of being able to react quickly to demands, and especially in rural and northern Ontario, bringing three people together. How strongly do you feel about the one-person board? Can you see the two sides, the need to act quickly in some cases for the one-person board, if we make that person a person who has expertise in the area and does not have conflict of interest? Can you see that situation or do you think in every case it's not appropriate?
Ms Browne: The problem is you start a precedent, get a one-person board in a place, and that person's future is going to be in this one person's hands. It sounds scary.
Mrs Johns: So you'd want to see a lot of controls.
Ms Browne: Yes. Maybe about three sets of heads, three sets of ears listening to the presentation, and at least try to do something. Many times a person may be very much an expert in their field -- and I do respect that a lot of these people have been doing this for years and are quite capable -- but the thing is, what happens is people get very grounded in their own ideas about how things should be or their own culture or their own ideas about what's right and what's wrong and that sort of thing. You need to bounce it off someone else. Somebody else may have a different idea and say, "Oh, well, that person is just doing this because of this," or whatever. They might have a different idea about that person's background than other people.
There's no way that one person could possibly understand every single culture, every single personal issue with a large, very diverse group of vulnerable people. I know three people can't either, but we're looking at balancing this off, because you don't want to spend money on bringing 15 people together, nor do you want to have it so there's only one person. So I'd say probably three is a good balance.
The Chair: Thank you, Mrs Browne. We do appreciate, because we realize the amount of work that you have put into this presentation, and your group, and we enjoy your practical approach to many of the concerns, whether we agree or not. Thank you very much.
Mrs Caplan: Let us know if the minister calls.
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ROBERT WALSH
The Chair: Mr Robert Walsh. Mr Walsh, welcome. You have one half-hour, including all questions, so you can proceed with your presentation.
Mr Robert Walsh: Okay, thank you very much. Honourable members of Parliament, I would like to make an observation of something that I saw on the way coming in today. My wife is with me and we walked down University Avenue and we found two people who are homeless, I suspect, covered with blankets. It really caused me to think about a few things. On one hand, you would like to be able to take a person who is in that situation and say, "I'll make everything right for you." Then there is a saying, "Well, are we going to take away rights from this person?" We're living in a rights kind of way.
I have a few ideas and I'd like to express them. My name is Robert Walsh and I have schizophrenia. The last time I spoke at the assembly's committee on the administration of justice was in February 1992. I gained a great deal of support for a contract where I can have my health care providers reject my rejection of treatment when that rejection of treatment is due to paranoia, ideas of reference, psychosis, hallucinations. It turns out I was describing a Ulysses contract, but at that time it was quite new to us.
If during hospitalization I have a change of heart and do not wish to be hospitalized, I frequently know just what to say and just what not to say. To determine if I am still ill is difficult for health care providers, but my wife knows. This is not uncommon. I know of several people who, though ill, managed to get their discharge. A couple of these went home and committed suicide.
My first point is that even psychiatrists, with all of their training and diagnostic abilities, do fail. I know of two people who ended their lives while they were in our Homewood psychiatric hospital. One was an old lady about 63 and she took a large bottle of aspirin. I guess her stomach bled. She bled to death. The other was a girl who went home, took her medication, all of it, came back to hospital and asked my friend, "Please sit with me while I fall asleep." She died.
It's just amazing to me, when you look at the statistics of mental illness, the confusion that you people have to make a decision which is going to be able to be empowering for the most people.
I've been admitted to the hospital 15 times since I first became ill. In 1986 I was misdiagnosed during a three-month duration of hospitalization. I was totally diagnosed wrong, to the point where I was discharged and the capacity assessor's ability -- even the psychiatrists fail -- but my wife has always been right on the money. It's a difficult thing to know whom do you trust to see what's going on. I have to trust someone, a psychiatrist, a capacity assessor, a rights adviser, but my wife has been doing these jobs since 1986. Even at that, she has not asked anything about my capacity. I trust and choose her to know where I am as far as my mental health is concerned. My wife is able to tell if I am well or just playing the part. Her insight is important, and having said that, she has not often been asked for her insight.
Stress causes me to relapse. I was hospitalized three weeks recently and I was in a locked unit for two of those three weeks. This was the most difficult hospitalization, but I was held against my will because a treatment team had determined that my suicide was impending.
My problem is that when we are ill we may avoid treatment due to fear or illness symptoms. Refusing help is very common with mental illness, but this government has considered that and has kept the Ulysses contract available for the power of attorney for personal care. This means that if I am ill, I should be treated, even against my will. That's great. However, the government has provisions for a capacity assessor who would assess the individual who is refusing treatment, thus disabling someone's Ulysses contract and their power of attorney. Treat me; if I refuse treatment, reject my rejection. I think that is the basic definition of a Ulysses clause and what has happened is, we have said, "What happens if someone takes advantage of this man and treats him, and he stays indefinitely?" or whatever. What happens if he's going through a rights problem? You have to have an option to make a decision to stay treated against your will if you're prone to rejecting help, or you make a contract where you do nothing and you keep the rights you have before legislated.
My friends who visited me at the last hospitalization said to me, and they have mental illnesses: "You look just fine. What was wrong?" I looked wonderful. My own friends, who are schizophrenics and manic depressives and whatever, looked at me while I was in the hospital, believing delusional things and being very ill, and commented that I looked well. The problem is, I have to trust someone who will know when I'm ill and when I'm well. I have to trust someone. To ask a person to put someone else in control over your life, you have to be able to trust that individual. Once you have come to know a person you can trust with your own reality, then you can perhaps set aside your own perspective and listen to what that person has to say, and probably would even agree to treatment.
If I'm ill and I refuse treatment and I'm suffering from the delusions and the psychosis and all of this, I don't want to sabotage my treatment; I want the Ulysses contract to stand as it was. A capacity assessor has assessed my ability, my rights have been advised by a rights adviser and I feel I've taken precautions enough and I understand what could happen if I lose control of myself and allow my wife to have control with our psychiatrist.
As I mentioned earlier, I once was diagnosed for three months with a bipolar disorder, the manic depressive illness, because I wasn't speaking about what was going through my mind. It's also interesting that the psychiatrists weren't really asking. My experience with psychiatrists is, they don't really want to know what the psychosis is; they just want to know whether it's present or not.
Perception is a problem. I could say something I believe, which I've done, and given it to my last psychiatrist, something of my religious beliefs. He read it and he said, "I can understand why you feel the way you do." The same work that I had written some five years earlier, the psychiatrist said to me, "You are a very ill man; we need you to stay in hospital and increase your medication." Nothing had changed, just someone else's perspective of what I was writing and saying. I say that because my wife, if she was asked, would know whether I am well or whether I'm not.
I'm concerned that it's a possibility to actually sabotage my own treatment by having a capacity assessor come and assess that I'm well enough to make a lot of personal decisions, but when it comes down to the fearful part that I have, about submitting myself to treatment, that's a separate thing altogether and I think it should be looked at. My wife, again, has always known and yet we don't ask the families. I have one perspective when I'm well and I have another perspective when I'm ill.
How can I sit here before you and tell you I want you to treat me against my will when I've never actually rejected treatment, except for once, because I had delusions that I was created eternally by God and no one could destroy me, not even a gun or a bullet or being beaten or anything like that. I had a delusion that allowed me to go into the psychiatric hospital, without really wanting to be there, just to prove that when they see I cannot be destroyed, then they will believe that I am someone to be listened to.
Of course, that's redeeming for me because it's a delusion that actually helps me accept treatment. A lot of people don't have a delusion like that. Their delusion is that when they go into the hospital someone's going to poison them and they're going to die.
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The alternatives are sometimes like two people who are sitting outside at Queen's Park, on University Avenue on the boulevard who are covered with blankets. Thankfully there was a big drive some time ago -- it's still ongoing -- to give blankets to the people who live on the street.
I'd also like to speak for 27,000 other Canadians who have been lost and have slipped through the cracks of the system by well-meaning thoughts and ideas. Those are 27,000 schizophrenics who have committed suicide or are committing suicide. One per cent of the population has schizophrenia and 10% of all of these kill themselves. I believe the main reason that happens is they haven't accepted the treatment or haven't accept the illness, believe they're very important and feel very important and walk around, and they're rejected by society and looked down upon, chased out of restaurants sometimes and what not.
I knew one guy who was very ill and he was banned from a number of different restaurants because he was really very dirty. I talked with his family a number of times and listened to their dilemma, how could they treat this man, he's living on the street. There wasn't any way unless he broke the law. Well, he did break the law and he did go to court and he was requested to take psychiatric treatment. The man is now married and has a good job and is keeping on.
Rights: My rights, your rights or someone else's rights. If you can't allow me to have a Ulysses contract where I can have my caregivers reject my rejection of treatment when my rejection of treatment is due to my illness, then at least give me the right to waiver for three weeks a capacity assessor and cause my power of attorney to become validated upon assessment of a psychiatrist who my wife and I trust.
The psychiatrist could in turn contact the public guardian and trustee and say he's validated the power of attorney. Give me three weeks and hold me in hospital, allow me to be treated. Even I refuse help, treat me anyway. I will get better and I will thank God that someone has made a provision, so that way I don't end up 1 in 10 or 1 in 100 or 1 in 33% of all these different groups.
It kind of sounds funny to talk about this, my mental illness, when I haven't actually rejected help. But I have a son who is 16 and my concern is -- I was very happy when the law was first put together with respect to the Ulysses contract. But my frustration is now. I know how my son thinks. My son is very headstrong and if I told him it was black, he would tell me it was white. There is no way he would be able to trust my perception or my wife's perception. If we had a Ulysses contract then it could be possible, if he rejects help, he'll become well again and then he'll realize what actually happened. You don't lose your memory of the things you believed; it's still there. When you become well you say, "Wow, I can't believe I believed that."
If I was writing a will it would be easy to take care of my property. No one would challenge my will, unless it seemed really bizarre. I understand the concern when it's a living person making a living decision, but I'm asking that we have the right to make these decisions.
If you choose not to make this contract, then you don't have any losses and you don't have any gains if you refuse to make this contract, but if you, however, do make this contract, possibly even before you became ill, you may be able to save yourself from a life on the street by being empowered. When you're in high school and educated, if you made this contract with a Ulysses contract within it, if you're suffering from mental illness, you will be treated in spite of your refusal and you will get better.
My one thing I would like to compare what I'm asking for to is maybe in other terms where it might be easier to understand. If your mother was fourth on the list for a heart transplant and she was paranoid of operations, if she had the ability to say, "I make this contract now, reject my rejection of the operation and let me go through this and let me become well if I can," you can kind of see that. Sure, if you're scared of the hospitalization and it's a physical thing and you're going to get treated and you might do better, yes, that sounds pretty good.
However, it always seems when we get into these grey areas that we all decide we've got to make everything blue or we've got to make everything green. Allow me to be empowered as I've asked to be empowered and allow someone else to make the decision not to do anything or allow them to make another decision to waiver the capacity assessment.
I'm very hopeful you will see that what I'm asking for is something that could be quite helpful for some people. I am quite nervous, but if you have any questions, I'd like to answer as I can.
The Vice-Chair: Thank you very much, Mr Walsh. We're going to entertain some questions now, if that's okay, and we're looking at about four minutes per caucus. We'll start with the NDP.
Mrs Boyd: Thank you very much for bringing up a number of issues that haven't been talked about here before. I stand to be corrected, but my understanding of the revisions in the act that's in front of us would be that it would provide for a kind of Ulysses contract, if you want to talk about it as that, within the power of attorney, so that you would under this act have the opportunity to name someone you trusted and that you could waive.
One of the conditions you could put into your power of attorney would be to waive the right to prevent your decision-making power to reject treatment under those circumstances, exactly as you've talked about. Now am I right? I see nods from those who --
Mrs Caplan: It would be nice if Hansard could record that the ministry's agreeing with Mrs Boyd.
Mrs Boyd: The ministry is agreeing that's the case, so I think the government's bill is trying to provide for the very real and very urgent problem you've brought forward. I think that was a result of some of the real concerns people have had, so that where that arrangement works well, where a person who has capacity at a time, as you have had, to understand that when you get into difficulty you may want to reject a treatment that otherwise you would have accepted, you can do that under a power of attorney.
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I suppose the problem is that a lot of people in your circumstances are not as fortunate as you are to have a person like your wife whom you can trust to that extent and so it really is the kind of provision that is there when you have someone you can trust. Many of the people you talked about with great empathy who may be all alone, who may be rejected out there on the street, who would similarly benefit may not have that kind of opportunity, and so trying to create a law that is going to provide that right to both of those individuals is somewhat difficult. It certainly puts an onus on the public guardian and trustee if they are to be the trustee in those circumstances.
Mr Walsh: I thank you for that information. I've been contacting the public guardian and trustee and presently my power of attorney is going to be registered soon, but I was advised by the people at the public guardian and trustee that if I did refuse help, they would send a capacity assessor to determine. Now if there's confusion there -- which is why I'm here; I've got different information from different sources who really don't know what's happening. I really didn't want to lose that piece within the legislation.
Mrs Boyd: So one of the things we need to be doing as we go through clause-by-clause is making sure that through the wording and the understanding of the public guardian and trustee's office and really quite clearly where someone has a trusted power of attorney for personal care, this is still possible. That's something that we really are grateful you have told us there's some confusion there. I think the intention clearly of the government was to allow that to continue, where there is a power of attorney.
Mr Tilson: Thank you very much for your comments. I think Mrs Boyd is correct. Probably when we do get into clause-by-clause, we can confirm some of the questions that are being raised. Section 32 I think is the pertinent section, which deals with the Ulysses contract issue and essentially waives rights; in other words, you are able to elect to waive your legal rights because you're the one who best knows what your needs are and there's nothing in the act which forces you to enter into any kind of arrangement.
I'm not going to take the time to read the section, because we'll do that in the last week, but the changes retain the key safeguards which ensure that the person is mentally capable when they sign their rights away and that they receive information about their rights and that they sign a form of acknowledgement at that time. The current requirements of the registration with the official guardian and public trustee and validation do not provide for any effective assurances, and that's what we're trying to do in the changes in this specific legislation. We believe that they only make it difficult for the attorney to take actions that the persons have asked them to take.
In your case, you've described your wife as someone you have trusted on it and that you would know your rights at that particular time and that you trust your wife with making decisions. She then wouldn't have to get it validated at a later date. I believe, if I interpreted what you were saying in your statements, that was your concern.
Mr Walsh: I'm very happy to hear that.
Mrs Johns: I'd like to add one thing to that. The Ulysses contract in the consent to treatment is section 22 and it also maintains what you're asking for in this statement too, so you may want to write that section down. I'll make sure you get a copy outside.
Mr Walsh: Thank you.
Mrs Caplan: I'd like to see if I can clarify this, but I'd also like to request that the ministry give you something in writing that clarifies it and clarifies it for us, because I see that there are two things here which could be a little confusing. The first is I believe section 22 under the health care consent, which does allow what's called an advance directive. You've been referring to it as a Ulysses contract. If it's not that section, I'd like to know what section it is.
You referred to 22 and I don't see it in that section, so if you could let me know what section it really is, that would be helpful. There's always been a provision -- and it may not be here -- under the Mental Health Act that allows an individual to have an advance directive for their wishes at a time when they become ill. Now I don't see that here, so I assume that remains in the Mental Health Act.
Mr Tilson: If you look at 32, the problem that I see is this -- and I think this is what you're referring to -- power of attorney for personal care is only valid when you are incompetent. It has to be written when you are deemed competent. So you write it when you're well and then you get sick and your wife has authority. But if you say, "I think I'm fine and I want to reject this treatment," there's a question as to whether or not you're competent, and that's where they send in the assessor, who may decide that you're competent.
I think that perhaps is the confusion that's out there as to whether or not the power of attorney has to be -- you have to be determined to be incompetent. It may not be a problem if you're on an in-patient basis and you have been admitted to hospital of your own free will. They may determine that the power of attorney is valid. So I'd like some clarification, because I think you raise a good question, and I'd like to know specifically what sections in this act or in the Mental Health Act would apply.
I believe that your concern has been addressed and that you don't have to worry, but I think you should have it in writing to take home and show your wife and your doctor, so that if there is ever any question, that you'll have that. Also, I think it would be helpful to all of us if we had some clarification, because I know that there are the two separate avenues for how to ensure that an advance directive can be given. Power of attorney is only one of them. The Ulysses contract is the other.
The question I'd have for the ministry is, has there been any change in that that we should be aware of and why is the office of the guardian and trustee giving Mr Walsh the information that they have been giving him? Does this act change what is in the existing act to fix a problem that he was concerned about?
Mr Walsh: What you mentioned is what my concern is with the Ulysses contract if I refuse treatment. My concern is they will assess me for capacity and could very well find that I am quite capable of making all kinds of decisions, but the one that I can't make is the fear of submitting myself to hospital.
Mrs Caplan: That's right. And what you're saying is that in that situation you trust your wife and not an assessor.
Mr Walsh: In the situation, yes.
Mrs Caplan: Is there any way that you can ensure that your wife is the one who's listened to? I think that can happen. We've seen the ministry people nodding their heads, and we want to make sure that we're right and that you can have that confidence to know that nobody will be able to come in and overrule your wife, if that's who you have confidence in.
The Vice-Chair: Mrs Caplan, we're down to about three or four minutes, so we've got enough time for one more question from each caucus if you're interested.
Mrs Caplan: Maybe we could have clarification from the ministry. I'd give up my time to let them put it on the record.
The Vice-Chair: So we'll start with the third party again, if you wanted one quick question.
Mrs Boyd: We would like some clarification on this because we are going to hear this again. I think the Friends of Schizophrenics are going to be speaking to us. This is one of the consistent issues that they have raised, as to how to help people who, when they're capable, understand that they must have treatment and want it, and then we get into this. So I think it's a fairly close issue, and certainly in the briefings that we had on the bill we got the full sense that the ministry was convinced that they had maintained that right, and certainly that was the intention.
If we can't get that assurance this afternoon, at least we all at the committee know that that's a major item for us to be dealing with in our clause-by-clause consideration, and we can ask Andrew and the people from the ministry to be sure that we have that clarification so that as we go clause-by-clause we can put those protections in for you and for many other people who have a similar concern.
Mr Walsh: Thank you.
Mr Tilson: I thought I'd expressed myself properly, but perhaps I haven't. This issue is probably a matter which should be dealt with in clause-by-clause, but I guess the question of having someone come forward now is, we don't want to jump in on someone else's time.
I have no problem requesting that the ministry at a later date provide something in writing for the purpose of the committee. It's my understanding the ministry has written Mr Walsh some time previously for his personal use, and I think it would be unfair of the committee to ask for that letter. Certainly as far as the power of attorney is concerned, if a person wants some form of validation, he or she can write that right into the document, and that's a matter of personal choice for that individual.
The questions being raised by my friends -- I have no problem requesting the ministry at the appropriate time to provide something in writing for the committee.
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The Vice-Chair: Ms Caplan, you have one minute.
Mrs Caplan: Is there any possibility that the ministry would come forward now? Trudy? They're willing to take a minute.
Mr Tilson: I don't know what the timing is. I don't know how long that timing's going to take. I tried to condense it. Obviously, some questions have been raised. I certainly don't want to get into the time of other --
Mrs Caplan: In the time you've taken to talk, they could have answered the question.
Mr Tilson: I don't agree with that. I made a statement and you didn't think that was enough. I'm saying if you want a thorough presentation, we'll give it to you.
Mrs Caplan: All we're suggesting, David, is that a lot of people are going to have this same question. If the ministry can take a couple of minutes to clarify it --
Mr Tilson: I said we're going to give you what you want. You asked for it.
Mrs Caplan: If you don't do it until clause-by-clause --
Mr Tilson: We're going to give it to you in writing.
Mrs Caplan: It's ridiculous.
Mr Tilson: We're doing what you want.
The Vice-Chair: We are running approximately five minutes ahead of schedule, so if in fact ministry staff did want to do a quick two- or three-minute presentation to try to fill in some of those blanks, we can do that.
Mrs Caplan: It would be very helpful.
The Vice-Chair: We are through, Mr Robert Walsh, with your presentation. On behalf of the committee, I want to thank you very much.
Mr Walsh: Thank you.
Ms Trudy Spinks: Thank you, Mr Chair. I'll get on with it in the interests of time. I'm just going to explain what the Substitute Decisions Act, as amended, provides about the Ulysses contract, and Halyna from the Ministry of Health will tell you how that is buttressed and connected to the Health Care Consent Act.
At the present time, the Substitute Decisions Act allows people to make a special kind of power of attorney that waives in advance their rights. At the moment, in order to use that document, it requires a number of steps. It requires at the first instance, when it's signed, a capacity assessment by an assessor to make sure that the person understands what it is they're signing. It then requires registration with the public guardian and trustee's office. That is why Mr Walsh would have been told today that that is the law as it stands until such time as this bill may be passed.
So it starts with the capacity assessment, it is then registered and it stays in the register. If there is an onset of incapacity, a periodic onset of this, then currently a capacity assessor would be required to validate that power of attorney, in other words, to confirm that the person who had signed it had indeed become incapable, and that authority would only continue for as long as that person remained incapable. Then in order to revoke that validation, a further capacity assessment saying the person was capable would be necessary.
The amendments simplify that process. The document is retained, the mechanism is still there, the capacity assessment at the first instance which says that the person is capable is still required, but the additional steps of registration and validation will no longer be necessary.
Mrs Caplan: Is there still a requirement for a capacity assessment at the other end?
Ms Spinks: There's a requirement for a capacity assessment when it's initially signed and there is a requirement for a capacity assessment in order for the document to be revoked. In both instances it would have to find that the person's capable.
Ms Halyna Perun: And then the linkage from that is, as Mrs Johns referred to, section 22 on page 76 of the Health Care Consent Act with respect to an admission to a hospital. The same language as appears in the current section 19 of the Consent to Treatment Act is preserved, but the wording has been changed to reflect what's happening now under section 50 of the amendments to the Substitute Decisions Act. So basically, under subsection 22(2), if the incapable person is 16 years old or older and objects to being admitted to a psych facility for treatment, consent to his or her admission may be given only by his or her guardian or his or her attorney for personal care if the power of attorney contains a provision authorizing the attorney to do so and is effective under section 50 of the Substitute Decisions Act. That's the Ulysses contract. So it's preserved with the new wording.
Following from that, where a practitioner finds a person to be incapable of treatment, so it is the opinion that the person is incapable of treatment he or she is proposing, and the substitute decider is under a power of attorney that is effective, again under section 50, that person has no right of review to the board because effectively while they were capable they waived that right of review. That is found in clause 30(1)(b) on page 80 of the Health Care Consent Act.
Mrs Caplan: Mr Walsh's concern is that he signed power of attorney, he's given it to his wife, he's concerned about the assessor coming in and finding him competent when his wife knows he's incompetent. Is there any way he could safeguard against that provision so the assessor would be required to listen to the wife? If he were to put something like that in the power of attorney to clarify that he instructs any assessors they must take the advice of his wife, would that do it?
Ms Spinks: There is a section which allows you to include in the power of attorney instructions or considerations you want the assessor to make in the amendments --
Mrs Caplan: So that would do it?
Ms Spinks: -- will accomplish that.
Mrs Caplan: That should answer your concern, Mr Walsh. If you leave your address with the clerk, we can send you a copy of that Hansard.
Mr Walsh: Thank you very much.
Mr Tilson: I think we should clarify one point just so we understand what your comment was. At the time of treatment there's no need for an assessor to be there at that particular time. The only time the assessor's going to be there is at the outset or at the time of revocation, if there is revocation. Is that what you meant?
Mrs Caplan: His concern is about revocation, if he doesn't want it revoked. That's the concern.
Mrs Boyd: Even though he might ask for it.
Mrs Caplan: Even though he may ask for it to be revoked, he's going to say, "I'm competent, revoke this" --
Mr Tilson: Which could come at treatment.
Mrs Caplan: At the point of treatment, he's going to say, "No, no, I changed my mind, I'm fine." An assessor comes in, and what he's saying is, "Listen to my wife, don't listen to me."
Mr Tilson: So the answer is to put it in the agreement.
Mrs Caplan: Put it into the power of attorney under the instructions.
NAOMI MORI AARON SHELBOURNE
The Chair: We'll proceed to the next presentation, Naomi Mori. Thank you for attending at the committee, and you have one half-hour starting from now.
Ms Naomi Mori: Thank you. I've prepared a written script. I apologize for reading, but I thought it would help keep me focused and move things along.
I do want to thank you, first of all, for the opportunity to be here today. I'd like to start by telling you a little about my background relevant to Bill 19, then I'd like to focus on my perspective on the proposed legislation based on, I have to admit, a cursory knowledge of it. I'd like to follow that with a few case studies, if you will, situations that have been experienced by disabled people I know that illustrate the possible impact of the new legislation under consideration here and the points I'd like to raise about it. Finally, I have a few recommendations I would like to put forward.
First of all, my background. Although I am a professional, my career has only a slight bearing on the issue at hand today in that I've worked in the field of special education for a fair chunk of time. I'm not an expert in the field of advocacy nor a person who brings strong expertise and legal analysis with me. My expertise is in friendship; friendship with one disabled person in particular, as you will see, and to a lesser extent with a number of other disabled people, most of whom are physically disabled and non-speaking. In the presentation that follows mine, you'll see me in the context of that friendship.
I'd like to go through some points that I have picked out of the proposed legislation. I did buy myself a copy of Bill 19. I went to the government bookstore and I paid my $15 for it, thinking I should be well versed in its contents before I came here to speak to you. That idea faded quite quickly. The opening words put me straight, "The Advocacy Act is repealed." I didn't know I should buy a copy of the Advocacy Act so I would know what I had to know to be well prepared. So I'm not as fully informed about what has been repealed. Reading on, I realized I would also have needed a copy of the Consent to Treatment Act and the Substitute Decisions Act to do a thorough job of familiarizing myself with the bill. So I apologize for being less prepared than I would like to have been, but perhaps I can serve as an example to you of what it's like being a member of the public at large, albeit a concerned member, trying to become well informed enough that I can give some support to a disabled person. There's certainly a rather enormous barrier there in my way.
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For my presentation I'll rely primarily on the sort of Coles Notes version that's inserted at the beginning of the act and further along in the health care portion, the Health Care Consent Act, appendix A, as well. I'd like to go through a number of the points about which I have questions or concerns individually.
Item 5 states, "The new act removes all references to rights advisers and eliminates all requirements that rights advice or notices respecting rights advice be provided to a person who is found by a health practitioner to be incapable with respect to a treatment."
Why? What's the point of stripping people of their right to an advocate? Would you accept it for yourself or the people you care about? What's the problem with ensuring that disabled people continue to have access to advocates? I can certainly tell you the problem of denying them access. The case studies I refer to I think illustrate my point, when I go on to that portion of my presentation. But my own experiences in trying to become well enough versed in legislation to become a quasi-advocate in this situation tell me of the very grave implications of this item, of leaving the disabled to rely on such shaky support. It's just not enough.
Clause 23(3)(b) of the Health Care Consent Act seems to me to say that where there's a communication problem, the health care practitioner can determine whether or not effort has been made to communicate with a person and decide that steps that are reasonable have been taken to find a practical means of enabling the communication to take place. What does "practical means of enabling the communication" mean? Why are health care providers not required to ensure that they use the person's means of communicating in their interactions with the disabled? Is it an issue of time, of valuing the time and perceived inconvenience of the professional health care provider above those of the disabled? My case studies address this further. For now, I just want to identify this as a point that needs much clarification and revision.
Item 6 in that first set of Coles Notes -- the initial list about informed consent seems to be missing something: no reference to the individual's rights. It lists all the things that have to be present, but there's nothing to refer to their individual rights. Does this reflect what's meant by no longer requiring that the person be informed about his or her rights? At the same time it does indicate there -- or somewhere in the document I'm pretty sure I read -- that the person being considered should be informed to the same extent that anyone normally would be. I wonder if all of you would want to know about your rights if you were being judged for your level of incompetence. Would you accept being denied access by someone brought in to treat you?
Item 17 protects the substitute decision-makers from liability for the decisions they make. I would ask that you keep this point in mind when you listen to the case studies and when you listen to Aaron Shelbourne when he makes his presentation. No legal liability for their decisions? Again, would you want to absolve those charged with administering to your needs from any liability for the decisions or actions on your behalf?
Item 24 states that there's no longer the need to ensure that someone determining capacity have expertise in the field of determining capacity. Thus, for example, decisions involving people with alternative means of communication would not require the board-appointed person making the judgement to be knowledgeable about the individual's method of communicating. How could that person know if reasonable means of communicating had been attempted? Again, you'll hear from someone, through Aaron's presentation, who uses eye gaze very effectively to communicate. Would any of you feel competent to make a decision about how well that person's capacity to communicate had been assessed, about what degree of effort was extended to communicate?
The section on the Substitute Decisions Act, item 3, seems to enable non-relatives to become decision-makers. I hope that I haven't misunderstood this but I'm not sure. Again, the few examples I will put forward indicate just how frightening the implications of this are for the disabled. The situation is even worse when one contemplates professional caregivers and the licence it gives some of them.
Item 7 of the Substitute Decisions Act states "if the attorney has...grounds to believe that the grantor is incapable of personal care." I thought that this document, when I first worked through it, focused on determining mental incapacity. Suddenly the word "incapable" through the bill takes on even more disturbing implications. Suddenly we're talking about those who need assistance in their activities of daily living as well. Is the bill truly intended to infer that physical disability is equal to mental incapacity when it comes to decision-making? Does the government truly intend to give that much control to those who administer personal care to the disabled? Please listen carefully to what Aaron has to say and then review this section of the bill.
I'd like to put forward a few case studies now to illustrate the issues I have raised.
The first one involves a man named Chester. Chester would have been here making a presentation if he were alive. He died a few years ago in his late twenties. An intelligent, thoughtful person, he had CP, which resulted in his need of a communication board to interact with others. Actually, he addressed members of the Legislature on at least one occasion during his short life. I got to know him when he participated in a field test on some software that was being developed to enable the non-speaking to use telecommunications. Unfortunately, he encountered pneumonia and subsequently died.
Chester spent much of his last two months in hospital suffering from that pneumonia. When I visited him I found out that the staff did not use his communication board, which lay on his bed. They also did not develop other means of communicating with him, even though he was an extremely capable communicator. They did not seem aware of the pain he was in. When I told them he was in a lot of pain, they immediately brought more pain-killer medication, but I only visited him as a friend occasionally. There was nobody there almost all the time. Chester was also starving; he attacked the milk shake and the hamburger I brought at his request with the speed and craving of someone who is famished. He needed help eating; he could not feed himself, unfortunately.
Chester needed an advocate. He needed the assistance of an advocacy agency. There are others alive today who still encounter and will encounter this type of experience if the right to an advocate is eliminated. It's just too vital to take that away from these people.
My friend has been robbed by caretakers in the residence in which he lived. He had his liquor stolen when he was out because the board of directors and the staff there did not deem it appropriate for him to have a lock on his door to protect his belongings when he went out. He had pieces of clothing stolen too, and this was by the staff, the caregivers who were going to be able to make decisions.
He talked to the person in charge of the residence on more than one occasion. Nothing happened. Advocates who learned of his problem assisted him in going to the police. Staff at the same residence made the rules, one of which was no eating other than in the kitchen. This was these disabled people's home. Residents wanted to be able to snack in front of their TVs in their own rooms or in the common living room. Does that sound like your home?
I'll give you an interesting observation about the residence. It was noticed that in the one common living room they had, the furniture was almost like new after seven or eight years of the residence being in operation, save one chair, an easy chair which was used for watching television. It wasn't occupied by any of the residents because they were all in wheelchairs, but it had been replaced four times. This is the level of care that you're talking about and the people you will entrust with the decision-making if the bill isn't changed.
Residents at a home for the disabled were voicing concerns about abuse by staff. This is not made up, I can assure you: being left in a Hoyer lift unattended for prolonged periods of time -- I assume you know what a Hoyer lift is -- and being yelled at by staff, and much worse. Efforts to talk to the director and to the board of directors by the residents themselves were to absolutely no avail. Nothing changed.
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Finally, their concerns reached the office of an advocacy agency. A meeting between the residents and members of the board resulted eventually in a review of practices at the residence. Staff and board members dismissed the statements about abuse prior to the review. I would say they were hardly in a position to make what would seem to be a legal decision about whether or not there was abuse, but they determined that there wasn't and didn't want to pursue it.
They were supported, though, in their assertions by somebody from one of the ministries. I will not get into that, but there was a government employee who singlehandedly arrived at a meeting with terms and conditions for a review process, the name of a person they should select and the suggestion that the review he had designed didn't need to include a written report, that a verbal one would suffice.
It was the advocacy agency's involvement that ensured that an impartial reviewer was chosen, that the terms of reference were revised and that a written report was provided. They also served as a watchdog that minimized the backlash to which the residents were being subjected.
The written report from that review, by the way, still rests with the board. They're not happy with its contents and they have not released it, to my knowledge, to date. The concerns of the residents have been given substance, and for our purposes here make it clear how very dangerous it would be to give caretakers any decision-making powers over the residents in that facility. I think it also points to how critical it was for these people to have access to people who are advocates and know the laws and know the disabled people's rights -- and knew how to help them get close to having them attended to.
There's one further point relevant to the review and to your hearing. One reality uncovered by the reviewer was that most of the residents were individuals without parents or family involvement on a regular basis, nor did they have a circle of friends who could advocate on their behalf. The reviewer was quite surprised but then actually, in reflection, realized that many of the residences that have been reviewed to her knowledge have people in the same boat. They simply can't be assumed to have a caring, supportive family around them, or friends. They are quite isolated from most other people than the disabled and their caregivers.
Bill 19 in its present form would give the staff there, although they have been found to have some major problems in dealing with the residents, access to decision-making power over the residents and leaves the residents no course to any advocacy agency. Can you really condone that?
I have four suggestions:
-- Be sure the legislation does not lump the disabled, especially those who use alternative means of communication, with the mentally handicapped. Do not deem those incapable of looking after their personal care needs with those who are truly mentally incapable of decision-making. Surely we've progressed beyond that stereotype. Ensure that they have the same opportunities, access and rights that we expect for ourselves and of which they are capable.
-- Eliminate the section or sections that include the people who are only incapable of personal care in this legislation -- just take them right out -- and please ensure that any persons who can gain access to decision-making power over the disabled are themselves proven to be sympathetic to their position and are not in a position of conflict of interest. People who are being employed by the residence and the facility in which they work are hardly in a position, from my observation, to make strong decisions that support the residents. In this climate I can be supportive. They need their jobs.
-- Do not remove access to the advocacy agencies, particularly for those who for physical or communication reasons cannot easily obtain information about their rights on their own. Assuming that family and friends such as I can fill that role is placing a very unreasonable burden on our shoulders. We are not knowledgeable about the legislation and should not need to be, just to be a friend or a family member. Would you want that requirement as a term of friendship with someone you care about? Would you feel comfortable with the burden of responsibility you were handed and knew you were unable to measure up to it? I could not live with the consequence of knowing that I had been the source of harm because I was not able to grasp some of the legislation that I should have known about to ensure that Aaron got the proper care that he deserves. I just need to know that I can continue to be an expert in the area of friendship, not advocacy.
-- Ensure that where a person has an alternative means of communicating, they are given an opportunity to use that means to interact with those making decisions about them, be they health care workers or anyone else. That would mean someone who signs to interpret for a deaf signing person, or allowing time for the use of a communication board. Do not give decision-makers an out because of what they perceive to be an inconvenience.
In conclusion, I would like to suggest that in Canada we settled the issue of personhood many, many years ago. Now we have a Human Rights Code that protects the disabled from discrimination. Has this legislation been considered in the light of the Human Rights Code, or has it been determined that by blocking access to advocacy agencies, you have in effect overcome the issue of the Human Rights Code? We've done a lot to educate Ontarians about the need to integrate the disabled into the community, many of whom are making tremendous strides to take on more and more responsibility for themselves, and very, very happily so.
I urge you to review the draft of Bill 19 to ensure that it doesn't eliminate the supports they have been given, supports in many cases that go right back to a PC government and its initiatives, and that it doesn't put these people at risk at the hands of those who may lack a basic respect for them as people.
The Chair: Thank you, Ms Mori. Our next witness is going to be assisted by Ms Mori in regard to communication. There's 10 minutes left.
Ms Mori: It will take us a couple of minutes to get organized.
The Chair: Okay. There will be a five-minute recess while we get organized.
The committee recessed from 1547 to 1554.
The Chair: I believe we are ready to proceed.
Ms Mori: We're ready.
The Chair: Okay, we're now in session. Aaron Shelbourne, through Naomi Mori -- and possibly you might explain to the committee how the means of communication is working, Naomi, for us.
Ms Mori: Typical of the use of technology, we had a slight glitch, but Aaron had worked at getting an introduction on his computer. He can use a switch here and a scanning piece of adaptation to WordPerfect to create text, and there's a voice component to it. But we aren't able to get that working. Like I say, my expertise is not in areas other than friendship, but he has it here and he's asked me to start by reading it to you, since we can't give you the voiced-out version.
Mr Aaron Shelbourne (Interpretation): Hi. My name is Aaron Shelbourne and I am very happy to be here with you today. Thank you for giving me the time to share some thoughts on what repealing Bill 19 will mean for some of my friends and me.
We all have the right to know what our rights are.
Ms Mori: Now, Aaron generally uses his computer as well as his communication board. For those of you who are familiar with Bliss symbols, most of the words, the sections have a little symbol and the word with it as well. In some cases there's just a word. He uses this hand. This is the arm that moves his computer, uses his Bliss board, turns on switches. It's quite a powerful right hand, but an important one in his life. He will give me the sign he wants and I will piece them together and repeat the sentence as he is able to provide it for me. We've prepared the points he wants to make, but I think it's fair that he prepare what he wants to say first. I will be his voice from here on.
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Mr Shelbourne (Interpretation): I was raped. It was a long time ago. If I'd had an advocate, I could get a person to have helped me then. Some of the attendants I told about it laughed at me. The non-speaking are not mentally handicapped.
I moved into an apartment. The advocates helped me to get the apartment on my own. I feel very very happy to live by myself. I can run my own life now. My parents did not want me to move. I knew I could do it. I am a person and I want to run my own life. I am not mentally handicapped. I am only physically handicapped.
Ms Mori: Aaron also brought with him some statements from some people who attend the program he goes to at Seneca College, other people who are disabled and non-speaking. He asked me to read them to you as the final portion of his submission.
Ann Running sent the following:
"I am living in a group home with 10 other people who are also non-speaking. I am afraid and angry over what might happen if this bill is repealed. My living situation is not good and it is not getting any better, even though we have been fighting for changes. It really gets to me sometimes. I get depressed and angry and I'm thinking about the frustrations I experience on a daily basis, all the time. People don't see the truth. We need to be self-advocates. We need people to listen. We need people to tell us what our rights are. I know now that I have the right to live in a home that is free from abuse, but nothing ever seems to change inside my group home. I need services to help me get these rights met. I worry about what might happen if someone other than my family were to act on my behalf. It is scary."
This one's from Linda Diane McQuillan:
"In 1976, one night after I had moved from Bloorview to independent living, I needed to go to the hospital. I went with my communication board to clarify my speech. I explained what the problem was. They were very patient with me and my board, but they couldn't find out what the problem was. I went in about 1 am and they did all kinds of tests the following day, and around 6 pm they wanted to do surgery. Some doctors didn't want to operate because I didn't want to operate because I didn't have anyone there. My mom lived three hours away from the hospital, so they couldn't wait for her to come and sign the consent form. When I went into the operating room, some doctors were arguing about what if I died. So they proceeded with the surgery. They found my appendix had ruptured, and I'm glad that I am here to share that I made it. But what if this happens after they repeal the bill? Maybe someone would decide that I should just be left to die."
This is from Darlene Gallant, who is also in the program:
"I would not like to lose my independence. I would still like to have the right to voice my opinions on my independence. No one copes with what I have to cope with. Therefore, no one knows my needs better than I do. I have to be able to have a say in my everyday needs and be able to say and control the things in my life. I need to have the right to be heard, to the point that things will change my quality of life for the best. I would go out and live on my own. I am still a person with feelings and needs that are to be respected."
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The final one is from Mark Campbell:
"If this act goes through, the right to privacy won't mean a thing at all. The right to choose where you want to live will be up to someone else and independent living will be no more. I have a hardworking mom who has stood by me all my life. Now I have to fight for myself. You can depend on someone helping once in a while, but if others make decisions for me all the time, then I won't have a mind, relying on someone else all the time. That's a drag.
"It's unbelievable how they stress independence when they don't really know what it's about. We have been misinformed about what independence is all about. These choices we are supposed to make: How are we supposed to make them if we have no supports or education about what our rights are?"
The Chair: Thank you. We'll have a round of questions. We have about five minutes for each caucus to either yourself or Mr Shelbourne.
Mr Clement: Thank you very much, both of you, for taking the time to come here today and express your personal views and your personal experiences with this very important area of citizen and government involvement. I just wanted to say that right off the top.
What I wanted to say and get your reaction to was to assert that what Mr Shelbourne was talking about, the need for advocates -- you had an advocate, Mr Shelbourne, who helped you find an apartment. That's under the existing framework, because the Advocacy Commission didn't have any advocates working for it. They just gave out rights advice from the time they started.
I'm all in favour, and I think all of us are all in favour, of having advocates like that out there in the community: friends, neighbours, advocates connected to various advocacy agencies. That is what we want to encourage and foster in our communities.
If I could just add a personal note, in my riding of Brampton South there is an apartment building with physically handicapped persons, whom I visited with a March of Dimes representative. We had a visitation with three or four persons who had different physical handicaps, one of whom was completely bedridden but had access to a computer and was able to communicate through that computer. When I was there, she was able to communicate her dissatisfaction with a particular aspect of her daily routine to the March of Dimes representative, who was then able to effect some change in her daily routine.
It just struck home to me how it is possible, through the March of Dimes, which is a community-based organization -- it does have some interrelationship in terms of funding with the provincial government, but by and large is also doing its own thing and raising its own money as well -- how that is possible to be there for persons who genuinely want to live by themselves and have access to those community services.
Am I wrong to characterize things that way? Is that not the way to go to ensure that we do have community-based and independent advocates out there who aren't part of a government machinery but who are doing the job -- an excellent job, in my view -- none the less. Am I wrong to characterize it that way?
Ms Mori: Speaking for myself, I would say that the points I was trying to make were that relying on friends and families, such as me, is really unfair, not only to the disabled, because we're not well enough informed, but also to the individuals on whom you're relying, because you're putting a burden on us that we're not equipped to handle. That's one point I'm making.
The other point is that it is a help to have those advocacy agencies in the community, but I have to reassured that the bill will insist that these agencies be called upon on these people's behalf. Aaron can't be given the option to make a phone call. That's not realistic. So how do we ensure that somebody is there to make sure he knows about his rights? That's not in the bill, unless I've misread it, and it's their need -- you see and you picked up on exactly what I hoped you would, that with advocacy these people are able to effect changes, but they have to be guaranteed that that advocacy is made available to them.
Mr Clement: I'm not saying it's perfect, and there are ways to improve things. Goodness knows that we don't live in a perfect society, but what I saw was the March of Dimes advocate doing all the things you're recommending we create a whole new infrastructure to do. It just seems to me that she was already there doing those things in my riding and my community that have to be done, and was doing them, I thought, quite effectively. Certainly, the persons who were the recipients of that advocacy felt confident enough that they could go to her with some changes in their daily lives that they wanted to see and she could effect those changes. I'm still trying to figure out why we need an extra layer, why we need an extra infrastructure to do that.
Ms Mori: The March of Dimes is doing a lot and Aaron certainly benefits himself from having March of Dimes around. I have watched them providing excellent support. But I read in your bill that there are situations in which it is not necessary to ensure that these people are available to help make decisions on these people's behalf or make sure they know the rights they have in the decision-making situation. That's the kind of thing that concerns me. I also have watched them make some decisions that are very difficult to take because they have financial constraints, so they can't always meet the needs of the disabled to the extent that I believe staff there would always want to, simply because there isn't the money available. In their role, their advice can sometimes be coloured by that. I understand it, but I don't think it's adequate to use that as an excuse for people who are dependent on them.
Aaron is saying that sometimes, in spite of what you are saying, the people who are paid by these agencies don't always understand what it is they're saying. They don't understand their communications, so even though they're well intentioned, they're not the best people to be their advocate.
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Mrs Caplan: It's certainly a very important presentation for the committee. The issues in this legislation are very complicated and it's helpful for us to understand the need for training, education and understanding of what rights are, and also I think of the barriers that people in the community have and why O'Sullivan identified the issues as clearly as he did, as well as the other reports that have been done.
I really don't have any questions for you, except that some of the changes in this legislation perhaps do not differentiate specifically enough between those people who are mentally incapable and those who have physical barriers and the need for assistance. There's nothing in this legislation that would support, from what I can see, those who are not incapable mentally but have a barrier that does not allow them to participate and therefore to get the assistance and advice that they need.
Ms Mori: That was one of the concerns I had. I found very deep in here that statement that suddenly made the switch into "incapable of looking after their personal care needs" from trying to prove incompetence to make decisions. It startled me. I kept hearing people telling me that this was really going to be hard on people who are physically disabled. At first I wasn't convinced, because I thought they were talking about something so different. It really is frightening to think --
Mrs Caplan: You've raised a point we haven't thought about before, frankly, and that's very helpful, because the terminology becomes very important. Just because you are incapable because of a physical limitation doesn't mean that you are incapable in the definition under the Mental Health Act as it deals with capacity. I think we have to find a way of differentiating mental incapacity from physical incapacity. That's very helpful to us, and I hope that the ministry will think about that and perhaps clarify for us in this legislation to ensure that someone who is perfectly mentally capable and able to make decisions for themselves cannot be deemed incapable because of a physical problem. So I want to thank you very much.
Ms Mori: May I add to that that there's the issue of the communication disabilities? Because I think there's not just the physical but there's the communication. As I say, these papers were written by people who have communication disabilities. You can see that Aaron understood everything you were saying. He gave you a very clear "yes." He can give you just as clear a "no." There's absolutely nothing to prevent somebody who's working with him asking him "yes" and "no" to determine what he wants. I don't think they should in way be absolved from being required to do that.
Mrs Caplan: Of course, the concern that I've been expressing over and over again with this legislation is that if someone is deemed by this legislation to be incapable, even though it's a communication problem, the provider of service to them doesn't even have to tell them that he's determined that they are incapable to make their own treatment decisions and does not have any responsibility to inform them of their right to appeal. Further than that, if he does those things, nobody can challenge him or sue him after the fact. So while the intent of the legislation certainly, I don't think, is desirous of causing harm -- I'm not questioning the motives -- I do think you've identified a problem for us of people who, because of their language or physical disability, communication problems, could be in a very serious situation where they're deemed incapable when they are not.
So I would ask for some clarification from the ministry at some point to address that issue to see whether or not there's any safeguard here for individuals who have communication problems, by any test, provided that the assessor or evaluator was trained to understand the language board or the communication tool, would make sure that a person was not incorrectly assessed as being incapacitated for the purposes of this legislation.
Ms Mori: One of the intentions we had was to make it very clear to you the level of concern that comes into -- you know, what's behind the decision-making that some of these people might put forward. Aaron's parents said they would not visit him when he moved. They said they would not, they were so convinced he couldn't live alone. Gradually, they've changed their minds because now, after four months, they've seen a difference. But those parents would never have agreed.
Mrs Caplan: Again, that's an example of the well-meaning family who obviously love their son and want to see him well but are worried about him taking the risk of independent living and so, while meaning well, are not allowing him to achieve his potential and desire to live on his own as independently as possible. Nobody can fault that family and say they don't want what's in his best interests, but he's perfectly able to make decisions for himself, and I think that's something that we would all want to see accomplished.
Mr Ron Johnson (Brantford): On a point of order, Mr Chairman: It's a moot point in that the legislation clearly defines "capacity" and in the definition of capacity it refers not at all to the physical ability of the patient in question. It's purely the ability to understand and that's here.
Mrs Caplan: That's the concern and that's --
The Chair: It's properly noted.
Interjection.
The Chair: Well, we'll discuss that in clause-by-clause. Mr Marchese.
Mr Marchese: I just wanted to thank you both, Naomi and Aaron, for your presentation, and thank you particularly, Naomi, for the kind of support that you give to individuals. You define yourself as an expert in the area of friendship, and that's something that is valuable and that is wonderful to see. But you've said, in response to another question from one of the other members, that society can't simply rely on people like you to solve many of the problems that people like Aaron have experienced in the past and are experiencing in many institutions, wherever they are.
So as much as some of the government members would say, "Yes, we've got to work more to get more volunteers to do the job out there and we've got to get the agencies, of course, to take the responsibility that they've always had in the past," there are still problems. That's why we created the commission. In spite of the friends who are there, in spite of the well-intentioned people who are there, and family members and so on, in spite of the various advocates who are in the various agencies, there are still many, many problems.
As a result of that, we created the commission, whose purpose was to get to some of these other problems that traditionally we have not been able to solve. So what does this government do? It repeals the Advocacy Act. They get rid of the commission, the rights advocates, because they say: "These people are simply too intrusive in their roles. We should just leave it to the family members, who are well intentioned and very good and loving, and in that way we will solve things." Well, if that were the case, we would not have needed to have developed the Advocacy Commission that we created. It's a problem.
I'm worried about what they're proposing, because I'm not sure what they're proposing, after the repeal of this act. I think this government and these members have an obligation, before they repeal it, as I know they will, to present something to this committee as to what they have to propose in its stead. So I am looking forward to some of these members presenting something to this committee before it's been repealed, because I think we have a responsibility on this side and people like Aaron have a responsibility to hear what else they propose to help out.
Mrs Boyd: I wanted to thank you very much for coming too, because I think one of the things that we need to be very well aware of is that capacity assessors, if they cannot understand the person whom they are assessing, may think that person is not capable of making decisions, and we've seen that. Those of us who have worked with people with all sorts of developmental and communication disabilities know that very often that this has been the decision, that they are incapable of making personal decisions, and people have acted as guardians for them. The public trustee and guardian office will tell you that very often they find that people for whom they have been appointed as guardians don't need guardians for decision-making, but somebody decided they did. They didn't know their rights. They didn't have a right of appeal.
So while there are many fine agencies like the March of Dimes and Cheshire and Community Living and all sorts of groups that do a lot of good advocacy work out there in the community, it is not specifically -- and very often they do not have the authority to act as the decision-maker against parents. This has been a long-standing fight in terms of the deinstitutionalization of people from institutions for the developmentally challenged. It is one of the issues that keeps carrying on. It's one of the reasons why the ability of a person to have the capacity to name a decision-maker who is not necessarily a parent may be a very important thing. That's the point that Aaron has brought forward, that being capable and being able to communicate about being capable may be two different things. That's what we have to keep in mind as we listen to some of our other people who come before us. Thank you.
The Chair: Naomi and Aaron, thank you for giving us a new perspective on the act and what we are considering here today.
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INFORMATION AND PRIVACY COMMISSIONER OF ONTARIO
The Chair: Our next presentation is Mr Tom Wright, Information and Privacy Commissioner. Welcome.
Mr Tilson: Mr Chair, the Attorney General has asked me to provide to the committee a copy of a letter which hopefully would assist the committee at the time Mr Wright is making his presentation, a letter to the Attorney General dated January 29. I have made sufficient copies of that for all members of the committee if the committee would like to receive that letter. I think it would be useful in the committee's deliberations.
The Chair: I'm sure. Our apologies for inviting you just yesterday. That was done at the request of Mrs Caplan and with unanimous agreement because we were looking forward to hearing from you. It may not have been a great length of time to make a formal presentation, but we have at least a half an hour, and I'm sure there will be many questions during that period also.
Mr Tom Wright: That's fine. Perhaps what I'll do, just by way of opening comments, is to say I'm quite happy to be here. It was short notice. However, we had been involved with Bill 19 before we were called by the committee, so this did not come as, shall I say, a total surprise to us. With me this afternoon to my left is Ann Cavoukian. Ann is the assistant commissioner of privacy. To my right is Ken Anderson. Ken is director of legal services in my office. Both of them are available, as well as myself, to answer any questions you may have and, probably just as importantly from my perspective, to assist me in addressing any questions you may have.
I thought that rather than even attempt to do any kind of a formal presentation, and in light of the fact that you now have a copy of the letter that my office sent to the Attorney General, perhaps I would just take a couple of minutes by way of a quick preliminary and let you know what has happened since that letter was sent. Quite a bit has happened, actually, since the letter was sent. Most importantly, there was a meeting last night involving myself, two members from my office and representatives from the Ministry of the Attorney General. We went through the concerns that are outlined in the letter of January 29. I'm going to just run through those concerns and where matters stand in terms of those discussions.
Beginning on page 1, specifically, we raise a concern around the public register which is contained and referred to in subsection 60(1) of Bill 19, clause (c.3). The concern we raise is one that relates to the way the Substitute Decisions Act, which is where my remarks are directed this afternoon, is worded now and where it's going under Bill 19. In fact, what is happening is that what is set out in statute in the present act will now be addressed in a regulation.
We've expressed concerns, as some of you I'm sure have heard before, about that kind of a shift. We have come up in previous circumstances with ways of addressing that kind of scenario when it is a regulation that's being looked at and we've discussed that same sort of approach with respect to Bill 19. I have to say that the meeting that took place last night was very positive. In fact, the representatives from the ministry showed a very real appreciation for the concerns we had raised as well as a willingness to have them addressed. I certainly appreciate that response to the letter we have sent.
I also think it's fair to say that in some ways the regulation holds the potential for better privacy protection than would have existed under the previous legislation. What happens with a public register is that none of the privacy rules that exist in the Freedom of Information and Protection of Privacy Act apply to a public register. The regulation, however, makes reference to the possibility of having rules which would govern the disclosure of information that was contained on that public register. I think that, again, holds the very real potential for an improvement of the status quo as we see it in the present Substitute Decisions Act.
We spoke last night about the possibility of an undertaking from the Attorney General which was similar to what took place with respect to some of the health provisions in Bill 26. I understand that there is the very real possibility that this undertaking would be forthcoming. What that undertaking would do would be to commit the Ministry of the Attorney General to bring to the attention of my office any regulations that would be enacted pursuant to this regulation-making power before they had been introduced. As I commented with respect to the health legislation, I think that in itself is a positive step as far as regulation is concerned and I have to say that it does go towards addressing the concerns in moving from statute to pure regulation. I think it's an important development. I'm not sure if this is going to be a trend that we're going to be seeing down the road, but I see it as something that's necessary when we move into this perhaps somewhat new way of enacting laws.
The other area that we touched on -- and I appreciate the fact that this may be overly technical in terms of something that a privacy commissioner would say -- relates to subsection 60(3) and a provision which says "for the purpose of sections 38 and 39 of the Freedom of Information and Protection of Privacy Act, authorizing an institution as defined in that act to collect personal information, directly or indirectly, for a purpose relating to this act."
We raise this concern because it just simply talks about any institution that could come under the Freedom of Information and Protection of Privacy Act, of which there are hundreds. The question we raised was, "Could you be more specific in terms of the kinds of institutions that you'd be thinking of?" The response was, "Yes, we think we can." In fact, some suggestions were made as to what those institutions would be. So there will be an opportunity for further discussions to try to identify a little more carefully and to narrow, which I think is a very important step, the potential for any institution collecting personal information directly or indirectly.
The final concern, and it's one I know other presenters have directed your attention to, relates to subsection 60(3), clauses (e.4) and (e.5). To describe it, of the concerns that we've raised these two provisions would be the most significant. The reason that they're the most significant, in our view, is that they -- and (e.4) in particular -- identify individuals, groups that would have access to personal information, that could have personal information disclosed to them, that are not covered by the Freedom of Information and Protection of Privacy Act. There is another grouping, the public guardian and trustee, of course, that is covered by the act, so we understand that.
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We discussed this in some detail last night, and one of the things that came out of our discussions, and I think it has some real potential for addressing those concerns -- there are really two parts to it. One is to link (e.4) and (e.5) so that you cannot do (e.4) until you've done (e.5). As for how you would actually mechanically do that, we haven't got to that point in any discussions, and I don't know what discussions might have taken place. But it was felt that -- and this is my understanding from talking with people in the ministry -- it was the intention that this would happen. By actually making it happen and addressing it in language in the legislation, there would be an opportunity to make sure it happened in that way.
That addresses part of the problem. That addresses the part of the problem relating to the use and disclosure of the information that you obtain under (e.4). What about the concern about the types of people who aren't covered by the Freedom of Information and Protection of Privacy Act? Again, I think a way was discussed that has some potential, and that would be by amending (e.4). It would be by adding something in the introductory words which would be along the lines of "subject to the conditions set out in the regulations."
What that would allow to be done in regulation, which would be reviewed by the Information and Privacy Commission, would be to set up some rules around the information that's being disclosed, the retention of the information. It could include some confidentiality provisions around that. It might even possibly include in there some kind of penalty provision. What it does, though, is it firmly puts in place some kind of controls around what people who obtain this information who are not covered by the freedom of information legislation can do with it. I think that in our discussions last night there was an appreciation that this would be a good idea, that it was the intention. In fact, I think we have some positive ways of looking at how that might best be done.
I guess the last comment I'll make: As for how the meeting is progressing, we've agreed, since we met last night and only had an opportunity to go over these matters in -- well, it took an hour and a half, actually; the meeting went on for a fair while. But we wanted to go back and think about it some more. I spoke with Jay Chalke this morning, and the intention would be that there would be further discussions taking place at a very early date in the next several days with a view to trying to implement some of the suggestions that I'm making to you. I guess that's where I would leave it, as far as the committee is concerned.
As I say, I think on balance there are ways to address what I feel are the concerns that exist with respect to the regulation and, once again, I go back to this notion of the regulation and the review. I'll leave it at that.
Mrs Caplan: First of all, thank you very much for coming on such short notice. The concerns that you raise particularly about the amendments to (e.4) and (e.5) were also identified by a presenter earlier today from the Psychiatric Patient Advocate Office, and I must say that our researchers identified that problem as well, and that was why I called you. You've said that that is a problem and that you're working with the ministry now to come up with some amendments that would fix the problem. Is that a fair categorization of the issue?
Mr Wright: It is.
Mrs Caplan: I guess my concern is that this bill was tabled on November 15 and from your letter it states very clearly that you'd had no discussion with any of the ministries prior to the tabling of the legislation, even though it contained provisions that were going to seriously or potentially have an impact on the collection of personal information and the disclosure of personal information. Is that correct?
Mr Wright: As I recall, the bill was tabled in mid-November, and certainly in advance of that being tabled there were no discussions. To be absolutely fair on this, the lateness of my writing to the Attorney General is entirely my responsibility. It is not a reflection of anything other than the fact of, in the recent while, a fair volume of work and an inability to get at it as quickly as I would like to. I just want to make sure that that's clear.
Mrs Caplan: I know the work that you put into Bill 26 and the concerns you had expressed there, so I know how busy you have been. But, linking the two, given the concerns about potential breaches in confidentiality and access to records and all of that which came up during Bill 26, I would have thought that the ministers involved in this would have said, "Given what we know about Bill 19, maybe we should call and check and see whether you have any advice." I just wanted clarification for the record that, until your letter dated January 29, there had been no communication, as you say, mutual -- they didn't call you and you didn't call them. Is that fair?
Mr Wright: That's fair. That's correct.
Mrs Caplan: Again, a concern I have is that legislation is tabled, goes through second reading and concerns are identified which could have been dealt with in advance if there had been what I would consider a reasonable and appropriate communication or consultation with people with expertise. That's the concern I have.
Given the kerfuffle, I guess is the only word, and the absolute embarrassment of the government on Bill 26, and I'm not asking you to comment on this, I can't understand why none of your ministers would not have picked up the phone and made the call to say, "Would you have a look at this before we get to committee?"
I appreciate your coming. I also appreciate the fact that you're working with them and I expect that there will be substantive amendments. But I do have a question and I share with you the concern and the trend for moving from statute written in law to regulation because that can be done behind closed doors.
Mr Leadston: Point of order.
Mrs Caplan: My question is, do you think there should be notice when a reg --
Mr Leadston: Point of order.
The Chair: There's a point of order on the floor.
Mr Leadston: Mr Chairman, we do have a letter from Mr Wright which says in the closing paragraph that he was contacted by the administrative assistant to this committee --
Mr Grandmaître: That was after it was tabled.
Mr Leadston: -- and asked if he wished to appear, and he indicated he did not wish to do so. Am I in error of this?
Mrs Caplan: Is that a point of order in the middle of my questions? Is that appropriate, Mr Chairman?
The Chair: I don't believe that's a point of order, but the clerk feels that it might reflect on the committee and she'd like to comment on it.
Clerk of the Committee (Ms Donna Bryce): We had a request from John Eichmanis of the commission to appear and that's what prompted our call to the commission.
Mr Grandmaître: After it was tabled.
The Chair: We'll delete that time from your questions. You've got one minute left.
Mrs Caplan: Thank you. This is my question. Regulations are all done behind closed doors. In Bill 26 we brought forward amendments that said: "Post your regulations and give people notice that this is what you're doing before they are enacted. Give us four weeks' notice." With the exception of one case they've refused to do that.
Do you think it's a good idea when it's done by regulation for members of the Legislature and the public to have notice of those regulations? It's nice that you'll have it, but how about the rest of us? Do we get any notification of what's done behind closed doors? Is that in the interests of freedom of information?
Mr Wright: Certainly, and this did come up in the discussions on Bill 26, I don't see it as a closed-shop experience. I think, as I expressed at the time, it's extremely important that if my office had concerns, those concerns would be made known more generally. I don't see it as within the ability of the information and privacy commission to decide what should or should not be done on its own as far as these issues are concerned. So I see the benefit certainly of making the public aware of these kinds of concerns in a larger way.
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Mrs Boyd: Did you, sir, sort of rely on the issue of regulation to ameliorate a problem because there was a refusal to change the legislation? Would your preference be to change the legislation so that these problems didn't exist?
Mr Wright: It's a good question and one that we've talked about a great deal. This was certainly the hope in the letter I sent to the Attorney General. We said, "Here are our comments, but we're making them without knowing some of the reasons behind what's appearing in this legislation. We want to hear, we want to understand, so we can comment in an informed way."
Certainly the discussion last night provided us with a much better understanding of what is going on as far as the Substitute Decisions Act is concerned. I think what it did, in my mind at least, it brought me comfort in saying regulation, with the caveats that we've set, is appropriate. As I mentioned with the one example, it does in fact permit the opportunity for better privacy protection than actually exists now.
I want to say to the committee that this whole notion of finding the appropriate balance is a very, very difficult job. I don't want to come before the committee and I don't want to come before and deal with government ministries in a way that isn't positive, and I think, in order to do that, there has to be flexibility. There has to be flexibility on the part of the privacy interests, and I think there has to be flexibility certainly with respect to where the ministry is going on something. I certainly saw very real evidence of what I thought was flexibility, and a very positive thing.
Mrs Boyd: The major concern I think we have is that section that would allow a person who has made or has even expressed an intention to make an application for guardianship to have full access to records. That seems to me to leave vulnerable people absolutely open to all sorts of exploitation, because in fact the person may never make that application, and then they have all this information, including sensitive mental health information. It seems to me, sir, that no regulation is going to solve that privacy of information problem and that we have a very big issue on that particular area.
We're not so much concerned about the public guardian and trustee or the assessors, because they have professional relationships and there's some regard there. But if some so-and-so down the line in a family, a nephew, decides that he might want to put an application and gets all sorts of property information, it leaves the vulnerable person wide open in terms of the information that person has to which he is not entitled, and because a person has not even been informed that they might be incapable, they have no way of knowing this is going on.
Mr Wright: I understand, as you say, in terms of the potential around that particular group, and once again, I also understand the concern around what a regulation can do and cannot do. I think what would be helpful would be to have an opportunity to see what could be done, and we discussed some of this last night. There are ways, for example, of establishing forms which would have warnings etc on them, penalties possibly, as far as misuse. I think you have to look at it in totality as far as what you can actually accomplish, but I understand certainly what you're saying.
Mr Marchese: Some quick comments. When we were in government, the opposition constantly said that what they wanted to see were things in the legislation because they couldn't trust regulation. I have no reason to believe that in this regard the Attorney General wouldn't be very concerned about what you have raised and that in the regulation many of those things would be addressed.
Part of the haste that the government is dealing with in presenting so many bills so quickly and not seeking the advice of people in the field is that it creates a great deal of stress and it creates a great deal of paperwork from a number of people, like the Psychiatric Patient Advocate Office. They said: "For the first time in 10 years, we haven't been consulted. Had they consulted us, we would have been able to solve a lot of the things that we are here today to talk about." So as much as you will be consulted in these areas, some of these groups, I suspect, will not be, and that concerns me.
I am not entirely sure about what's going to happen, but I would feel better if this government, based on your discussion with the ministry staff, would bring forth greater clarity around what you're talking about that you seem to have with them before this legislation is passed, so that we have a better sense of what that regulation might say. Unless we see that, we're going to have a problem with that.
Mr Wright: And I appreciate that in terms of what the options are. Again, as I see my role before the committee it is to offer you the benefit of our expertise --
Mr Marchese: I appreciate that.
Mr Wright: -- what the options are and where we have been with our discussions, which is what I am trying to do.
Mr Tilson: Thank you, Mr Wright, for coming, on such short notice. I'm the parliamentary assistant for the Attorney General and I wasn't present at your meeting last night, but I certainly will say to the members of the committee that the Attorney General has instructed me to tell you that his ministry has committed not to promulgate a regulation until consulting with your office, specifically on the content of the regulation. The Attorney General has given me instructions to give that undertaking to the committee.
The impression has been given by the members of the opposition at least that, up until last night, there has been no efforts by the Attorney General to contact your office. I would like you to clarify that. Prior to yesterday and prior to last night, had the Ministry of the Attorney General communicated with you to request consultations with respect to these issues?
Mr Wright: Following the sending of the letter, I did speak with the Deputy Attorney General, indicating what we would like to see happen by way of a meeting, and last Friday spoke with Mr Chalke for purposes of actually setting up a meeting. That's the extent of what has taken place up until last night.
Mr Tilson: Okay. I have one further question and I think Mr Clement has a question, Mr Chairman.
The amendments you propose in your letter of January 29, if the government is prepared to make such amendments, the question I have is whether or not you are prepared to accept regulatory action, depending of course on the content of the regulations.
Mrs Caplan: In advance, just give them a blanket carte blanche.
The Chair: Excuse me, Mr Tilson has the floor.
Mr Tilson: It's been tempting to interrupt you, Elinor, all day long. It really has.
Mrs Caplan: I apologize.
Mr Tilson: It's really been tempting and I am holding off. I will continue if you provide the same courtesy to me.
The regulations that you've talked about today -- you've mentioned several of them -- if those amendments are made, and obviously you have talked about the fine balance between that and regulatory power, assuming there is consultation with you, which the minister has indicated that he is prepared to do, would you be content with those types of regulations?
Mr Wright: You have indicated, and I think an important caveat to that, that it would depend on the content of the regulation itself and what is covered in it.
Mr Tilson: Yes, of course.
Mr Wright: Certainly we have accepted, as far as the concern we've raised, that that would a legitimate way to address them.
Mr Clement: Two questions: First, did you also review the Health Care Consent Act as part of your review?
Mr Wright: We did not. I'm sorry, that's not correct. We did have a look at it. I think, reflected in the fact that we have not been in touch with anyone with respect to what's in that legislation, I can say that we raised no concerns.
Mr Clement: Could I just then get for the record, very quickly, Mr Chairman, based upon your review of the entirety of Bill 19 and based upon your consultations with the affected ministry, based on your personal judgement, and with the undertakings that that ministry has given you and the minister has given you, would you now say that you are satisfied, from your perspective as a privacy commissioner, with Bill 19?
Mr Wright: I think that's a very important last point to make. From my perspective as a privacy commissioner, I may well be satisfied. But again, I think it is important for me to say that I do not purport to speak for the public of Ontario.
Mr Clement: Of course not.
Mr Wright: I am offering you the comments that I have based on our expertise and I would say, as we see it, the concerns as outlined have been addressed.
The Chair: Mrs Johns, did she not have a question?
Mr Clement: I think I asked it for her.
The Chair: Okay, then I thank you very much for appearing, and your associates.
Mrs Caplan: On a point of order, Mr Chair: Before you deal with the last item, could I know who's carrying this bill for the government?
The Chair: The question is, who's carrying this bill for the government?
Mr Tilson: The Ministry of the Attorney General has carriage of the bill, and I'm the parliamentary assistant.
Mrs Caplan: It's traditional around here to have the parliamentary assistant sit up front with staff, and if there's a question that's raised from presenters, to have it answered right then and there.
The Chair: We could discuss that tomorrow.
Mrs Caplan: I just thought I'd raise it so you could think about it and maybe talk to them.
The Chair: I don't know of any traditions in that regard.
Mrs Caplan: It is if there's somebody carrying it so it just facilitates it, and it is a legitimate point of order. If a presentation comes, I have no problem with them using the government caucus time to answer a question that a presenter may have. I just wondered if they'd like to consider that so that people might know who has carriage of this and they're here.
The Chair: I'm sure they will put that under consideration.
The last item of business: The subcommittee has reported that it met on February 5, 1996, and recommends that a witness appearing on Bill 19, one Laurent DeGuire, be reimbursed for expenses associated with hiring interpreters, hearing-impaired and francophone, necessary for his presentation in Ottawa on February 13, 1996. I would like a mover.
Mrs Caplan: Agreed.
Mr Garry J. Guzzo (Ottawa-Rideau): Do we put a cap on things like that?
The Chair: Not in this case. He's only going to be there for a short period of time.
Mr Guzzo: It's a very expensive town, Ottawa.
The Chair: Are there any nays? Passed.
We're recessed until 9 o'clock tomorrow.
The committee adjourned at 1702.