HALDIMAND-NORFOLK WORK GROUP OF SIMCOE
CONSUMER/SURVIVOR BUSINESS COUNCIL OF ONTARIO
LEARNING DISABILITIES ASSOCIATION OF ONTARIO
ONTARIO ASSOCIATION OF NON-PROFIT HOMES AND SERVICES FOR SENIORS
ONTARIO AIDS NETWORK KINGSTON AIDS PROJECT
ONTARIO ASSOCIATION FOR COMMUNITY LIVING
FAMILY ASSOCIATION FOR MENTAL HEALTH EVERYWHERE
DIXON HALL NEIGHBOURHOOD CENTRE
UNITED STEELWORKERS OF AMERICA
CONTENTS
Monday 19 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
Alan Silverstein
Haldimand-Norfolk Work Group of Simcoe
Mary Taylor, executive director
Consumer/Survivor Business Council of Ontario
Diana Capponi, representative
Learning Disabilities Association of Ontario
Sharon Bell-Wilson, assistant executive director
Ontario Association of Non-Profit Homes and Services for Seniors
Carol Shaw, president
Paul O'Krafka, administrator, St Joseph's Villa
Michael Klejman, executive director
Margaret Ringland, director of regional relations and professional services
Right to Life Association
Dr Michael Barry, president, Right to Life Mississauga
June Scandiffio, president, Right to Life Toronto
Gwen Landolt, legal counsel, Right to Life Toronto
Ontario AIDS Network; Kingston AIDS Project
Mark Bulbrook, executive director, Ontario AIDS Network
Paul Waltenberry, representative, Kingston AIDS Project
Marilyn Smith
Alliance for Life Ontario
Jakki Jeffs, executive director
Geoffrey Cauchi, legal counsel
Ontario Association for Community Living
Nancy Stone, president
Audrey Cole, board member
Barbara Thornber, executive director
Family Association for Mental Health Everywhere
Judy Wallace, member
Eileen Boyd, member
Dixon Hall Neighbourhood Centre
Toby Druce, community development worker
United Steelworkers of America
Carolyn Egan, executive member
Dan McNeil, chair, Steelworkers Organization of Active Retirees
Peter Lillico
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 L) for Mr Conway
Kells, Morley (Etobicoke-Lakeshore PC) for Mr Tilson
Brown, Michael A. (Algoma-Manitoulin L) for Mr Chiarelli
Johns, Helen (Huron PC) for Mr Hudak
Marchese, Rosario (Fort York ND) for Mr Hampton
Also taking part / Autres participants et participantes:
Ministry of the Attorney General
Spinks, Trudy, manager, implementation support and counsel, implementation support unit
Clerk / Greffière: Bryce, Donna
Staff / Personnel: Swift, Susan, research officer, Legislative Research Service
The committee met at 0935 in committee room 1.
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.
The Chair (Mr Gerry Martiniuk): Good morning, members and ladies and gentlemen. This is the continuation of the hearings of the standing committee on administration of justice in consideration of Bill 19, the Advocacy, Consent and Substitute Decisions Statute Law Amendment Act. I welcome to the committee today Mr Morley Kells, member for Etobicoke-Lakeshore, and Mr Mike Brown, member for Algoma-Manitoulin.
ALAN SILVERSTEIN
The Chair: Today, Mr Silverstein is on first and he has one half-hour. We shall proceed. Mr Silverstein, it's all yours.
Mr Alan Silverstein: Thank you, Mr Chairman. I've prepared a memorandum. I'm assuming the committee members have a copy of it.
Very briefly, my background: I am a lawyer in Toronto. I have been practising since 1977 in real estate and other related fields. I've seen powers of attorney -- and that's really my focus this morning -- for property go through a number of different phases, from the time when a power of attorney became invalid if the donor became incapacitated to the pre-SDA regime, to the SDA, to possibly Bill 19. So I speak from the experience of clients and the other exposure that I've had to powers of attorney, having written many times about it in the Toronto Star in my weekly column and talked about it on CFRB radio.
A lot of criticism was levelled about powers of attorney because of the fact that, the way the SDA was worded, the public guardian and trustee had the ability to take charge of a person's affairs if they did not have a power of attorney and became incapacitated. I was disturbed by another provision of the SDA which allowed the public guardian and trustee to become statutory guardian of property even if a continuing power of attorney existed. People said, "How is that possible?" You have to really wade through the legislation to realize that the enabling sections, which enabled you to exclude the public guardian and trustee, or the public trustee as it then was, were repealed by the Consent and Capacity Statute Law Amendment Act, which was passed at the same time as the SDA in 1992. Therefore, you had the situation that even if a person had a power of attorney, there was a discretion in the hands of the public guardian and trustee to override a power of attorney.
I had a lot of discussions with people and I said, "If you look at the very first form, it talks about reclaiming the power from the public guardian and trustee if you are a named attorney." So that was my concern, as much as other people were concerned about the fact that the public guardian and trustee could step in when there was no power of attorney.
In my memorandum, I've really laid it out in three different areas: the background, the changes and areas that I think require further work.
Let me go through the background very quickly. No longer could a continuing power of attorney stop the government from being involved in our affairs; I've mentioned that. The province, through the public guardian and trustee's office, could override a power of attorney; again, that was my concern. To go through how that was possible, section 16 talked about the assessment process. It contained what I call a perverse reverse presumption: Unless someone specifically said no at that stage -- and if they were in a coma, it became impossible to do so -- then the public guardian and trustee had the power to assume control of property even though there was a valid continuing power of attorney and effectively terminate its existence. A lot of people, when told about this override, expressed concerns about it.
Subsection 17(1) of the current SDA says, "The attorney under an incapable person's continuing power of attorney may apply to the public guardian and trustee to replace him or her as the person's statutory guardian of property." Well, why would you ever have to apply to the public guardian and trustee to take back a power if you had it in the first place? Here we were, thousands of people signing government kits, signing powers of attorney, and yet the government itself had the power to override that very power of attorney. It didn't make any sense.
Nowhere did the SDA say the public guardian and trustee would be a substitute decision-maker. We kept hearing it time and time again: It was policy, it was policy, it was policy. But the words didn't appear anywhere in the SDA. An admirable policy, but one that was not in writing.
I viewed the SDA, at least this part of it, as an unwarranted interference in people's affairs because of the very broad and undefined discretion being given to the public guardian and trustee to override a power of attorney. It effectively allowed state management of affairs and assets in these circumstances. How does Bill 19 improve this? I'll be very frank: I feel Bill 19 goes a long, long way, not only to improving the system but to reflecting the wishes of the people of Ontario. I have hundreds of letters that I received in response to my Toronto Star articles supporting my position.
0940
First of all, the assessment process has been totally revamped. The new section 16 says someone must request the assessor to perform an assessment; an assessor just cannot go out on his or her own. The person requesting the assessment must first of all have reason to believe a person's incapacitated. Secondly, they must make inquiries if a continuing power of attorney exists covering all of a person's assets. There was no requirement like this under the old section 16. Thirdly, they must make inquiry and be satisfied that no family member plans to apply to become a court-appointed guardian. So the section lays out the three alternatives very clearly. You have to inquire if there's a power of attorney, you have to inquire if they want to go to court, and only if those two situations are not going to happen, will the public guardian and trustee get involved. So the three alternatives are laid out clearly.
Furthermore, the role of the public guardian and trustee is clearly stated. We have subsection 24(2.2) which says that the public guardian and trustee will only become a court-appointed guardian of property "if no other suitable person...is available and willing to be appointed." We now have in writing -- or we will have if this legislation is passed -- that clear statement that the public guardian and trustee will only be involved if there's no one else available. What about the situation, though, that I talked about earlier, the override? That's also going to be dealt with, as I'll show you in just a moment.
The legislation cleans up some of the requirements about security. These are more technical issues.
What the legislation does, in my opinion, more than anything is recognize the predominance of a continuing power of attorney for property. I want to repeat that, because it's so important: It recognizes the predominance of a continuing power of attorney for property. Bill 19 makes it very easy for a named attorney in a continuing power of attorney to retrieve the powers from the public guardian and trustee if the public guardian and trustee somehow becomes involves through inadvertence or otherwise, if the CPA covers all the person's property, as most of them do.
How is this new system so simple? If it turns out that a family member goes to the public guardian and trustee and says, "We'd like you to become statutory guardian of property," and afterwards it appears there is a continuing power of attorney -- perhaps it was locked in a safety deposit box -- all the attorney has to do is sign an undertaking to honour the provisions of the CPA and the public guardian and trustee will back off. This recognizes the predominance of the person's wishes. You sign a CPA; that's what you want to have done. Somehow the public guardian and trustee becomes involved, the valid CPA surfaces, the public guardian and trustee will back off, will relinquish his or her powers based on this written undertaking.
Any lawyer involved with the term "undertaking" knows that it's a very simple document to draw up. As a matter of fact, I asked officials down at the public guardian and trustee's office, "Will there be a prescribed form?" and I was told no, it's such a simple form they don't even have to prescribe it in regulations.
This eliminates the override that I was talking about earlier and that so many people expressed concern to me about, because now, if the public guardian and trustee gets involved, they will relinquish the powers, if the CPA covers all of the person's property, once the attorney produces the CPA and signs the written undertaking.
There is an important section which a lot of people are not aware of in Bill 19 -- section 77. It's really important to emphasize to the public that valid continuing powers of attorney will continue to be valid after Bill 19 is passed, assuming it is passed. So many people have called me and so many people have written to me, "Will my power of attorney be valid?" There's real need to emphasize that anything that was valid before will remain valid in the future.
Another change made by Bill 19 is to make the same standard for witnessing for wills and for powers of attorney. Under the SDA, we had two different standards -- a much more stringent standard for powers of attorney than for wills. Yet from my experience when people sign wills they sign powers of attorney, and when they sign powers of attorney they sign wills. One minute you've got one standard and one minute you've got a second standard. What the legislation has done is recognize there is one standard for both types of documents.
What remains incomplete? I go through a few technical points in my memorandum. For example, there's reference once to the person as opposed to the document. I'm concerned about what happens if the person requesting the assessment can't satisfy things. It should clearly say a certificate of incapacity will not be issued. There should be a priority ranking for who can apply to the public guardian and trustee if there is no CPA. What happens if there's more than one suitable applicant? Is there any penalty for putting the public guardian and trustee through the wringer and then having to reclaim the power afterwards, or the attorney reclaiming the power? In other words, what happens if it's an unnecessary process?
But the real concern I have is the absence of an affidavit of execution. We've seen in the last 10 years the real estate industry, with the registration of documents, move away from affidavits -- and it is a system that is open to fraud, forgery and abuse. There is absolutely no reason why we should have different standards for wills and for powers of attorney, and yet the legislation perpetuates this. What we have for a will is an affidavit of execution being essential before it can be probated. On the other hand, we have powers of attorney being signed without any affidavit from the witness. I think it is absolutely essential to ensure that the person did sign the power of attorney, that you have the witness swear an affidavit as well. There will be criticism, of course, saying, "People can't do their own powers of attorney, they can't rely upon the kits." You can grandfather anything that was done before.
But on the other hand, to ensure that people are signing documents that are very, very important and very effective and very powerful, there should be an affidavit of execution attached to a power of attorney before it becomes valid to, again, correlate wills with powers of attorney.
Lastly, there should be a process so that if people want to challenge the validity of a CPA, the SDA should provide for this. There is provision in the Succession Law Reform Act that deals with challenging wills based on lack of mental capacity, presence of undue influence, non-compliance with formal execution requirements and the like. Those sections could be easily lifted into the SDA through Bill 19 so we've got the same system.
As I said, a lot of people sign wills and powers of attorney at the same time; the same standards should apply to both. We're certainly moving in that direction, but on the other hand, there are still areas that do require some improvement before Bill 19 becomes law.
That is my presentation. I'm certainly open to any questions from any committee members.
Mr David Ramsay (Timiskaming): Thank you very much for your presentation this morning. On your last point, that you feel it's necessary that there be an affidavit of execution, what would be the downsides of that, if we brought that in? Would this delay --
Mr Silverstein: Delay what? The legislation?
Mr Ramsay: No, no, delay the process.
Mr Silverstein: It would probably ensure that people are signing the documents in the presence of either lawyers or notaries, and that's the only downside. The witness would have to get the affidavit sworn. But again, if you emphasized that anything done to date is valid, therefore anybody who used the kits to date would be able to rely upon them. You could have a cutoff date; any document signed before that date doesn't require a witness, any document signed after that date does. The date would be one of the things you'd have to check to see whether or not there was an affidavit attached.
Mr Ramsay: Would there be a charge attached to this?
Mr Silverstein: Depends on who is doing the commissioning of the affidavit. Certainly lawyers don't charge when they're doing it for clients. A lot of lawyers will charge a nominal charge for an affidavit of that nature. But again, it protects the public in the sense you have the witness now swearing he or she did see that act take place. It's protection for the public, protection for society at large.
Mrs Elinor Caplan (Oriole): The existing kit does not require witnessing by a lawyer or a notary.
Mr Silverstein: That is correct. I'm not saying the witness has to be a lawyer. I'm saying the witness has to swear an affidavit.
Mrs Caplan: But that's not the case now.
Mr Silverstein: No, it's the same thing. Anybody can be a witness today, anybody can be a witness later, but the witness will have to go to a lawyer or a notary to swear an affidavit that he or she did see the donor of the power sign the power. To be frank, and I know this is not the right committee, I would like to see affidavits come back into real estate. That's another committee's meeting, I know. But it eliminates the situation where you might have fraud, abuse, undue influence, because at least someone will have to swear an affidavit, and if they feel reluctant to do so, they won't swear it.
Mrs Caplan: The concern that I have with it is the one that my colleague raised, and that is that it does add an expense. Most people don't realize that their MPPs can act as notaries and do that without a charge to them.
Mr Silverstein: Then it's the job of the government to make sure that point is emphasized. On the other hand, if a power of attorney is being challenged for being invalid, for abuse or misuse or forgery or fraud, the cost involved there is much higher than perhaps $10 or $15 to go to a notary. I'm sure groups will be out there, and maybe you would appoint notaries in seniors' organizations so that they can notarize them at no charge. That's a possibility too.
The government controls who the notaries are. Perhaps they could have a process to set up a notary system so that they notarize these. You can have limited commissionerships. A commissioner can have very limited powers under the commissioner of oaths act, and that's all you need. Therefore, you could have a commissioner appointed to do that very purpose. There are ways of overcoming this, but the protection is much greater than the system we have today.
0950
Mrs Caplan: You also make a good point that nowhere in the legislation, the SDA, does it say the public guardian and trustee would be a substitute of last resort. That's a very important point. My own view is that everyone wants the public guardian and trustee to be the last resort, and one of the concerns that has been raised at committee is that in the hierarchy, by lumping parent and children together, if they disagree, the public guardian and trustee would be called in to resolve the dispute.
Mr Silverstein: There are two things you just raised there; number one, what you've just mentioned as the first point, but, secondly, perhaps the hierarchy should be split up. I mentioned that here. Perhaps we should have a ranking system. The Consent to Treatment Act does provide for a ranking system. I could not understand why there wasn't a ranking system when it came to this part of the SDA. It just didn't make any sense. The same laws were being passed, and yet one had a ranking system, one did not.
Mrs Caplan: I think that is a very good point, and I hope the government will listen and respond to that, because I think not only should the SDA have a hierarchy but that even within the consent to treatment, I think the hierarchy should be split so that parent and children are not in them, primarily so that you will ensure that the public guardian and trustee, as best you can, is the last resort. Are you proposing a specific clause be added, and, if so, where would you put that clause?
Mr Silverstein: You have the hierarchy labelled, but not as such in the SDA, where it talks about who can apply to the public guardian and trustee. You can say, as I believe the Consent to Treatment Act says, that this is the hierarchy, in other words, priority. Number one has priority over number two, and two priority over number three.
I want to emphasize again, dealing with your first point for the moment, not only does it say so clearly, dealing with the public guardian and trustee and the courts, but the ability for the attorney to effectively reclaim the power states again that the public guardian and trustee will relinquish the power. So you have all three situations covered. In other words, if you're explaining to the people what are the three options, it's very clear: Number one, sign a power of attorney; number two, have the courts get involved; number three, have the public guardian and trustee get involved. Take your pick. There are only those three choices.
Mrs Caplan: There is one other point here that numerous presenters have mentioned, and that is that the new health care consent legislation does not require notification of rights and information about right to appeal. You didn't mention that in your brief.
Mr Silverstein: No. My experience is strictly that dealing with continuing powers of attorney for property. That's the type of practice I conduct. Those are the concerns that have been expressed to me. I'm not as cognizant of those concerns, and therefore I unfortunately do have to pass comment on them.
Mrs Caplan: That's fine. On the issue, you're saying that your experience is with power of attorney for property.
Mr Silverstein: That's right.
Mrs Caplan: Have you had any experience with power of attorney for personal care?
Mr Silverstein: We've signed them at the same time but we've never had to use one yet. I'm fearing the day when we do because I know it's a very tragic situation. But, again, most people when they come in -- now when people come in to sign wills, it's usually definition of wills; power of attorney, property; power of attorney, personal care.
Mrs Caplan: Thank you.
Mrs Marion Boyd (London Centre): Thank you very much for your presentation. Your point 5, that the status of continuing powers of attorney needs to be clarified, is right. We've heard from a number of people that they clearly don't understand that those would continue to be in place, so I hope that will be taken care of in the amendments.
I am very interested in your points on pages 5 and 6, what you call the unfinished parts, because I think you're quite right. There isn't a very good clarity about what you do when there is more than one potential applicant in terms of this. Have you any suggestions as to how that could be done? Do you think this hierarchy would resolve that?
Mr Silverstein: I think the hierarchy is part of it.
Mrs Boyd: Yes.
Mr Silverstein: One of my secretaries got married in the fall and she had been in a tragic accident and there was need to get the public guardian and trustee involved. Is it her parents of 24 years or her husband of two months who would be able to go to the public guardian and trustee? That's the kind of situation we're trying to deal with, where both would say, "We should be appointed," and the legislation should make it clear what the hierarchy is, unless of course, just like a will, you write your own rules. That's the whole idea.
Mrs Boyd: The hierarchy in that case would say a spouse, wouldn't it?
Mr Silverstein: That's right. But again, just like wills, if you don't have a will, the laws of intestacy say what your will is. If you don't have power of attorney for property, the law of the province will say what the hierarchy is. If you don't like it, make your own. If you don't do your own, these are the rules.
Mrs Boyd: So you think it should follow, for example, the same order as the intestacy one, and that would then separate parents and children?
Mr Silverstein: That's correct.
Mrs Boyd: Because this has been mentioned as a real issue, and I think it is.
Mr Silverstein: Absolutely. Again, there has to be a closer drawing of the wills legislation and the power-of-attorney legislation. I think if that's done, you'll probably see the public understand the whole process much better.
Mrs Boyd: I know that property is more your area, but one of the concerns that's been raised is the possibility that someone who is a child of a person could witness their continuing power of attorney, and that this might be a conflict of interest. That's true for both personal care and for property. Can you comment on that? Do you see that as a possible conflict?
Mr Silverstein: That's also a possibility with wills, and there's always the provision that the matter could be resolved by a judge in court. In other words, whenever there is a potential conflict, the judiciary has the power to say, "We will waive that conflict in these circumstances -- not in every circumstance, but here."
Mrs Boyd: But I thought children who were going to benefit under a will, anyone who benefits under a will, could not be a witness.
Mr Silverstein: But there is an override provision that the courts do have, and again maybe that's what we need here. We're not trying to make this one section 30 pages long. On the other hand, if there are safeguards in the wills legislation, perhaps they should be here as well.
Mrs Boyd: I think you make the point very well that the whole purpose of this exercise is to make what we've got work better, and certainly some of the complications that you talk about clearly were unnecessary and need to be resolved. I think a lot of the concerns that you've raised about those are real.
On page 6 under number 5, you talk about what happens to the person who wilfully requests an unnecessary assessment, what happens, for example, where someone asks for an assessment that isn't necessary. What would you suggest as an appropriate penalty?
Mr Silverstein: I'm not sure myself, but I'm concerned about the person who says, "Well, they'll never find the power of attorney"; they're going to have a tough time finding it, but they know it exists. That's one thing I was racking over in my head, and that's why I didn't come up with a proposal, because I'm really not sure what the penalty should be.
Mrs Boyd: It's really fraudulent, isn't it, if you know one exists?
Mr Silverstein: That's right. On the other hand, somebody may say, "I'd like to be able to get involved unless they can find it." It's food for thought more than anything at this point.
Mr John L. Parker (York East): Thank you very much for your very helpful comments this morning, and thank you for your support for this legislation. We're hoping it solves a lot of the problems with the existing legislation, and we're encouraged to get support from people who are knowledgeable in the field.
I found your remarks very clear, but I think perhaps in the questioning some confusion may have arisen, so I want to address some of those points off the top if I might; first, concerning point 5 on page 5 of your paper. Here you refer to section 77 of the bill, and it was suggested in questioning that it is hoped this matter will be taken care of in the amendments to come. You're not suggesting any amendment here, are you? You like section 77 as you read it.
Mr Silverstein: I like section 77, yes.
Mr Parker: Your recommendation to us is that we give proper profile to it so that it is recognized out there that section 77 is in there.
Mr Silverstein: May I use your word "profile" when I do it in my newspaper article next time? Thank you.
Mr Parker: If you would. So you're not asking for an amendment there; you like what you see.
Mr Silverstein: No; I do, yes.
Mr Parker: On the matter of beneficiaries under a will, the rule is that if you are a beneficiary under a will, you may not be a witness to that will. That's the standard rule; that's standard common law.
A power of attorney doesn't do the same things as a will does, does it? A will disposes of property to certain beneficiaries. Somebody stands to gain from receiving something under a will, and if you're going to get something under a will, it's hardly appropriate that you be a witness to that will. But in a power of attorney, it's not a matter of disposing of property; it's a matter of allocating the authority to deal with someone's property or with somebody's decision-making capacity. One doesn't benefit from that. One takes on a responsibility to be exercised in favour of the grantor, which is entirely different in this case than a will, isn't it? The grantor hardly benefits from a will.
Mr Silverstein: No, but it's a question of entrusting the power, and that's the point. When you sit down with people, they say, "I am entrusting someone with the power to be in charge of my affairs if I become incapacitated." In many respects they look upon it the same way. In other words, who's in charge? That's why the independence is so important, and if you want to put an override in the event of inadvertence, that's fine too. But the point is, it should be made clear at the outset that you should not be a witness if you are the grantee of the power.
Mr Parker: That's provided for, that the grantee, the one who is given the power, cannot be a witness, but that's not to say that a child of the grantor is necessarily going to benefit from the document.
Mr Silverstein: There's always the possibility of abuse, and that's the concern people have.
Mr Parker: And as you pointed out, the courts are there to protect us against that sort of thing.
1000
Mr Silverstein: Yes, there's no question.
Mr Parker: So I take from your comments that you don't see any need for an amendment to the proposed legislation in this respect, do you?
Mr Silverstein: It's something that could be considered. I would prefer that it not be there, to be frank with you, because I'd like to keep it clean. If you're a witness, you can't be the donee of the power, the grantee of the power.
Mr Parker: But the concern that was raised in questioning was whether a child of the grantor could be a witness.
Mr Silverstein: There could be situations where there are not a lot of people around. You need two witnesses; you have one witness who's independent and there's another person, somebody's quite ill and that's the only other person around, maybe an only child, it may be in a hospital room, it could be in northern Ontario, it could be anywhere where people are not around and there are only two people available. One witness invalidates it, clearly; two witnesses, one of whom is the donee, would also invalidate.
Mr Parker: Frankly, we see it the same way and that's what the proposed legislation reflects. I think we're in agreement on that point.
Mr Silverstein: Exactly.
The Vice-Chair (Mr Ron Johnson): I'm sorry, I'm going to have to cut you off here. Your time has expired.
Mr Silverstein, I want to thank you on behalf of the committee for your presentation.
Mrs Helen Johns (Huron): A point of clarification, Mr Chair, while these people are coming up: In his unfinished section, highlight number 3, is there a priority ranking? I just want to draw to the attention of the people around the committee table that subsection 18(3) in the Health Care Consent Act may well provide that. I didn't get a chance to ask him on what he really wanted there, but subsection 18(3) is the ranking that would take into account the priority ranking he's asking for, in (c), unfinished business, page 5 of his report.
Mrs Caplan: Point of order, Mr Chair --
The Vice-Chair: I'm sorry, Ms Caplan, the presentation is ready to start here.
HALDIMAND-NORFOLK WORK GROUP OF SIMCOE
The Vice-Chair: Next on the list will be Mary Taylor, Haldimand-Norfolk Work Group of Simcoe.
Ms Mary Taylor: Good morning, everyone. I'm very, very happy to be here this morning to bring you some information that I think is important. Particularly, it pertains to economic development and how it will act as an advocate for our vulnerable populations. I would like to begin my presentation this morning by showing you a short eight-minute video of one of the entrepreneurial small businesses that is attempting to help vulnerable populations.
Video presentation.
1012
Ms Taylor: I would just like to say that those of us who have been involved over a number of years with psychiatric survivors and people who are living on disability pensions and on public assistance know that one of the most positive forms of advocacy is economic development. We have examined this from every point of view. We have looked at it from people going back into hospital, from people being healthier in the community, from people being able to earn, and particularly from people having a chance to learn new skills, to have a trade.
I bring to you this morning the idea that we are, I believe, all looking for solutions, solutions to problems that have become very deeply ingrained in our society. One of those enormous problems is poverty, the growing poverty of our vulnerable populations, of people who are on limited incomes, of people who cannot seem to get beyond the poverty line.
One of the things I really would like to say to you this morning is that in Third World countries they have come to rely on economic development to alleviate the suffering and the poverty that is there -- through the United Nations, through building community economic projects. I think here in Canada we have a fourth world. When we talk within our community of common bond, we often refer to ourselves as belonging to the fourth world. We define the fourth world as a developed country, but where there are a number of people who become disfranchised for a number of reasons within that community.
It is made up of people with many disabilities, psychiatric disabilities, developmental disabilities, ethnoracial and cultural groups with disabilities, aboriginal people with disabilities, and our young people, many of our young people who are getting out of high school today and have not been able to finish, where their option is not to go on to college or to university, where there are no jobs for them, where they have lifetimes of poverty ahead and unemployment.
How do we solve this problem? How do we begin to look at this problem? It will not be resolved through indifference. It will not be resolved by trying to give inch-by-inch increases to small disability pensions or to welfare. It will be resolved if all of us come together and we look at ways, at strategies that will help people to learn in a different way, where there is some application to how they learn and what they need to learn. It will come through commerce and through marketing and through people having a chance to give of their talents, to earn and to contribute to the common good. It will come through people being industrious and living with perseverance and living with hope and opportunity.
I believe, with the rescinding of the advocacy bill, if there is any way that we can put something in its place, I think very serious consideration should be given to building small businesses and a commercial enterprise. What else is there that we can do?
Each year our economy is moving away from an industrial base to a technological base. The more technologically based we become, thousands and thousands of jobs are being lost, and these jobs are not jobs that will be reinstated. They are lost forever. So what we have is a widening gap, a polarization between the haves and the have-nots. In five years, if we continue this trend, we will have developed effectively a level of poverty within our borders that we will never extricate ourselves from.
The time is now where we need to look to utilize people's talents, to utilize their industry, to come together and to build a marketing system that is throughout Ontario. Some of this groundwork has been laid. We have done some of the work. We have not been lazy over the past 10 years, nor have we not realized the plight that we're in.
In 1981, Abel Enterprises began as a small economic project for psychiatric survivors. We have moved along. We have found the benefits when people can work, in lessened hospitalization, in people not having to live in the worst places in town. A small income, even if your allowable income is only $160 a month, is the difference between having a pair of shoes and not having a pair of shoes, between living in a run-down boarding house and perhaps having something a little better. It brings hope. What it also brings is a challenge to the human spirit, and what it also brings is a society and a community saying to people: "You belong with us. You should not be separate and polarized. You belong with us."
The contribution that people can make with their talents is enormous. The wonderful products that are made within our establishment are only a very small possibility of what could become part of the greater good.
What I tried to bring to you this morning is not a lot of grumbling and bemoaning and saying how awful it is and what is happening. What I'm trying to bring to you is a way to resolve.
On behalf of people who have the talents to do what they need to do, before I close I want to bring one important message to you and it is this: It is that many people have the misconception that they can give a little seed money to economic projects and within a few years they will all become self-sufficient and then everybody can walk away. That is not the truth. That is not the way it can be.
As long as the system functions the way the system functions, there will be a constant need for support. Where the great benefits are is that other small businesses and communities are supported by buying products and goods there, and the less of going back into hospital, and also the fact that many people who would go on to pensions, do not go on to pensions because they're able to sustain themselves.
Just one last point, and that is that the more commerce we have, the more we grow, the stronger country we become. It belongs to all of us, and God bless this country. Thank you. I'm open for questions.
1020
Mr Rosario Marchese (Fort York): Thank you, Mrs Taylor for your presentation. A number of people have spoken to some of the issues you've spoken to, perhaps in different ways, but the concern is very similar.
When you repeal the Advocacy Act and you eliminate the commission, including rights advisers, you're eliminating an important part of what I think you're talking about, because what people have been saying is that the commission, the Advocacy Act, its advocates, are a focal point of being a part of as opposed to being disfranchised. If you eliminate that, you really are putting us out again, and what it allows people to do, through this commission, through the Advocacy Act, is to be able to have a voice. If you take it away and you put nothing in its place, you're effectively taking people's voices, as it relates to issues of the very kind that you spoke about and that we've seen today.
I think many people have spoken to this. I would be very concerned that the government wouldn't listen to this component of it, and what you've said is that at the very least, the government has to put something in its place.
Do you have a sense of what that thing could be?
Ms Taylor: Yes. What I would like it to be, if we could do a magical thinking thing here and say what it would be, it would be a corporation with some funds that would support small businesses being set up throughout the province, and perhaps ideally the core model in each community would then develop small satellites where people could go through the program, like an apprenticeship, and then move on to have their own entrepreneurial businesses and at the same time the corporation would be responsible for building a collective marketing system.
With Prezance Of Mind, it is one store that is very tiny, but it is geared to selling the goods of people who are poor. You cannot put stuff in there if you are wealthy. It is for poor people. We are opening another one in Waterford in Ontario which is Prezance Of Mind number two. We have plans to open a small one in Kitchener. If this marketing system could be throughout Ontario where we could market back and forth, we could develop a wonderful commercial entity that would serve the poor, and it would serve all those tiny communities, the hardware stores that are trying to sell their goods, whatever kind of store. It increases the economy. So this is what we would like to see.
I do have a model down in black and white, if anybody would like to see it at some time in the future.
Mr Parker: Thank you very much for your presentation this morning and thank you for the very significant video that you showed us. We're into our third week of hearings on this bill starting today, and we've received deputations from many people who have clearly suffered greatly in life, and they continue to suffer with one limitation or another that has weighed them down: no fault of their own; it's a condition they've been born into or has attached itself to them over life.
Many of these people have pleaded with us to retain the Advocacy Act, as though it's some sort of lifeline that will save them from the condition they're labouring under. I go back and I read the Advocacy Act and, frankly, I just don't see anything in it that's going to solve the problem they've got or address the concerns they have or improve their condition in the way they would wish it to be improved.
Frankly, I see your video this morning, and I'm inspired. What I see there is a group that is doing something, that is giving the kind of hope and giving the kind of self-worth and dignity to the people who we have been hearing from for the past two weeks, and giving them a chance to get on their own two feet and feel some value for themselves, and to show that they matter and to show that they mean something.
In a world of limited resources, and as a government, we have to make choices as to how we allocate those resources. If we have money to spend, if we have public resources to allocate to people with those needs, would you rather see it put towards the type of model that is represented by the Advocacy Act and the Advocacy Commission or the kind of work your organization is doing, the kind of thing we saw on your video this morning?
Ms Taylor: I think I can best answer your question by saying this: I don't think it should be an either/or question. I don't think it can be an either/or question. I think people who are vulnerable become vulnerable economically. If you're vulnerable economically, it affects your whole life. You can also become vulnerable because you don't know what your rights are or where your rights belong. So to have a rights adviser or someone who can do that sort of thing is important too. I cannot give you an either/or answer. I think what we do is enormously important because it is a solution; it can be a solution and, frankly, I don't see another solution. I gave you a handout this morning. At the back of it you will see how people are becoming more and more vulnerable as time goes on.
So I think it is that important. I also think to have rights is important. I'm going to answer your question in that way because that's my opinion.
Mr Michael A. Brown (Algoma-Manitoulin): I want to say how much I enjoyed your presentation. I know, representing a northern rural riding -- essentially rural, although sometimes some of my constituents get a little upset when I talk about a city of 14,000 being rural -- one of the things, and I think you pointed it out, is the Canadian Mental Health Association, for example, which operates an outreach in the city of Elliot Lake. They provide, not working programs like you do, but day programs and many important, to the people anyway, activities.
I'm concerned -- they have expressed this concern to me on a number of occasions -- that people, especially schizophrenics, will wander off and there's no way anybody knows where they went, what's happened to them, how they sometimes stop taking their medication, and you really have some great difficulties in making sure that these people have the opportunity and are cared for. I'm wondering if you have some suggestions on how the advocacy side of this, which I think is somewhat important -- not somewhat; it is important -- and these work-related business opportunities can come together. I'm a little bit unclear on exactly how we mesh those.
Ms Taylor: The Advocacy Act that is going to be no more. Hopefully we'll put something in its place. What we hope will be put in its place throughout Ontario -- what I'm bringing to you today and what I hope you will find valuable is the fact that economic development is a way of advocacy. What I say in my tiny, little document here -- I made it brief especially -- is that we would like to see economic development become the process from which self-advocacy becomes a reality.
I can tell you, Mr Brown, that I work with some people from the north. We have a northern representative on our business council. The north is very interested in getting some economic stuff going as far away as Fort Frances, to Sudbury. They are very interested. We have one who travels down every month just trying to bring the northern concerns. Your concerns of people wandering off, of people not having a place to belong to in society are very valid. That's exactly what that means; that's what that indicates.
It is a symptom that this person is disenfranchised, is disvalued, does not have a place, and so the wandering off and the tragedy. As I was coming here this morning, I saw people on the streets, sleeping on the streets. When I came in yesterday by bus I saw people on the streets and I wondered if they were dead or alive. So some of your northern people, who probably have not been able to find a place in the north, and this goes for the south and eastern Ontario also, probably are some of the people who are sleeping on the streets here or in other urban centres.
Until there is an alternative, another vehicle, a coming together, and we advocate for people by providing places where they can work and become part of our society, not alienated, then I think this is where we begin to cure.
The Vice-Chair: I'm sorry, we are out of time. Thank you, on behalf of the committee, for your presentation.
1030
CONSUMER/SURVIVOR BUSINESS COUNCIL OF ONTARIO
The Vice-Chair: Our next submission will be from Diana Capponi, Consumer/Survivor Business Council of Ontario.
Ms Diana Capponi: I hope you in particular, Mr Parker, listen well to what I'm talking about, and that'll address some of the issues you raised in regard to why the act is important to our community.
My name is Diana Capponi. I'm here today representing the Consumer/Survivor Business Council of Ontario. We provide hands-on development support to individuals and groups of psychiatric survivors, including schizophrenics, across the province who are interested in participating in the economy. We are really concerned about our high rate of unemployment. We have an 85% rate of unemployment in our community. This unemployment rate would not be tolerated within any other geographical or other community of interest.
I've heard a lot of people speak to this committee; I've been watching the proceedings on TV and I've been present. I guess I should also thank this committee for the opportunity to speak, but I have mixed feelings about this. My understanding, when the Advocacy Act was proclaimed and when the commission was established, was that this commission would be at arm's length from government, and here we are again speaking to lawmakers and to government about the needs of vulnerable people and the needs of my community and communities of vulnerable people to begin battling all over again to ensure that our rights are protected and that abuses of the systems are decreased.
I've brought some documents attached to my talk for you to look over when you have time. I hope that you do make time, because I see this committee has a tremendous responsibility to a large number of people in this province. Those documents include Yes We Can, and Business (Not Quite) As Usual, which describes the employment strategy, much like Mary Taylor was speaking to, that our community has used to meet our employment needs as well as to increase our economic status.
I would hope that this committee is aware that hand in hand with mental health problems in particular comes poverty. The poverty is often ignored. The focus is on the mental health problem. I see psychiatric survivors and people living in poverty as people who have skills that many of you may not have, and would not survive the circumstances in which many psychiatric survivors live.
I've listened to the presentations from A-WAY Express, I listened this morning with Abel, I've heard David Reville's talk in regard to the Advocacy Act and I support all those submissions, although when I'm sitting at home and watching TV and hearing deputations much like the Ontario Psychiatric Association, I'm amazed that my TV is still in one piece.
The Ontario Psychiatric Association talks about alliances between patients and doctors. I would suggest that this committee needs to speak to more patients, in particular in the mental health system, and get their viewpoints on this "alliance." This committee has to be aware that there are conflicts of interest here that we're talking about and that there are billion-dollar industries out there, making money and creating jobs through our pain. I wish I had a job that I could work at and not have any accountability or responsibility for the work that I do.
I've listened to Mr Clement speak many times -- he's not here today, unfortunately -- about the notion of moral responsibility. If we have an Advocacy Act, if we have patients' rights advisers, then we're going to get away from the community and the family's moral responsibility. Here are some examples of the lack of moral responsibility that I and people I care deeply about have suffered.
I'm a 43-year-old woman. I come from a really extremely violent home situation. I've had past drug addictions, I've had several pregnancies and I have serious and severe health complications. The last institutional setting I was through was within the Ontario mental health care system. I've also travelled a lot in my lifetime and I've seen poverty and degradation, but I've never seen poverty and degradation the way it is here in the province of Ontario.
I've lived in rooming and boarding homes, homes that I was discharged to as part of a mental health care system. I've witnessed people being punished and thrown into the streets. I've witnessed people losing limbs due to frostbite because service providers and professionals had deemed them uncooperative and uncompliant. I'm used to lice being a daily part of life, every day using Kwellada shampoo. I'm lucky I have so much hair today.
We would like to believe that community and social services and families are natural advocates for vulnerable people, and yes, often they are, but not always. Let's not be naïve and forget that often families are the root cause for why people end up in the system in the first place. I'd like to challenge any member of this committee who had taken a life path different from the path that their families would want you to. What have been those consequences? If you have money, if you have education, the consequences may not be so terrible. If you have a disability, if you have no money, if you have no education, families can often be the enemy.
I want to give you a few examples of what I see is a lack of moral responsibility, and taking away the Advocacy Act will do nothing to help these circumstances.
I lived, when I was discharged from a provincial psychiatric hospital, in an infamous rooming and board home where unfortunately 65 people with mental health problems were housed. The rent was deemed strictly on the basis of their income. Meals were arranged that included stale bologna sandwiches -- I ate them a lot -- macaroni and cheese, Puffs and corn flakes. The house had lice, scabies and mice, and here were people with disabilities living in this situation, with a community filled with "moral responsibility" watching.
Occupational therapists came daily, public health nurses came daily, doctors came daily, adult protective service workers came daily, the general welfare workers came daily and FBA workers came daily, yet for years no one took the moral responsibility and addressed the abuses and in fact the deaths that went on in that house. One man by the name of John, a developmentally disabled man, developed a flu bug. The flu bug turned into pneumonia and John died. John died with a number of professionals responsible for his care. John died in this home, in a community that would like to assume it has moral responsibility. That moral responsibility was met at the inquest into John's death, and here we are again, today still, trying to fight for rights and to stop the abuses that go on that could lead to deaths of people like John.
Another woman in the home getting raped -- no locks on the door. Anyone could come into the home. Anybody on the street could enter the home and do whatever to whatever resident there, and do you know what? The residents could call the police and complain and could complain to workers, but if you have a mental health problem, you're usually not listened to.
I'll tell you a story about a young woman by the name of Jeneace, who had been sexually and physically abused. She was deemed developmentally disabled at a very young age. She was placed in foster care at the age of 11. Her foster father repeatedly had sexual intercourse with her. This was the year prior to him being named the foster father of the year of an association. When this woman was pregnant, she developed leukaemia. The minute the baby was born, the child was placed in care and she was sent to hospital for treatment of her leukaemia.
The treatment was very extensive and the woman almost did not survive the treatment, but she did and then tried to get her child back. Trying to regain custody of the child was almost impossible for her because of her disability. Her foster father and mother were also trying to gain custody of the child, and at this point Jeneace decided to name who the father of her baby was. Ultimately, Jeneace lost full parental rights to her child.
Within two months of having lost rights to her child, the leukaemia returned. She was aware of the ramifications of not having extensive treatment again. She didn't want to be in the hospital. She didn't want to go through the pain and suffering she had gone through. She didn't want her family members coming and harassing her on a daily basis at the hospital, and she certainly didn't want to see her foster father again.
The response of the hospital at that point was to form Jeneace against her will. She was deemed incompetent. After a day and a half of being held in physical restraints in hospital, I was able to see Jeneace. Nobody had advised Jeneace of her rights. Nobody had spoken to her in a way that Jeneace understood. A legal aid lawyer came. Finally, when she was aware of the fact that she was entitled to representation, a legal aid lawyer, with very little understanding of the Mental Health Act or of the review board that takes place in hospital, came to supposedly take care of her rights.
1040
His first statement to her was, "Why don't you reconsider and do what the hospital wants?" I was shocked. I pointed out to him that he was there to meet her needs, and we went through the review board process together. Jeneace was found competent at that review board hearing, but prior to that time, she had to succumb to a spinal tap because she felt that was one way she could get free use of her arms and legs. Where was the hospital's moral responsibility in that case?
Finally, I want to give an example of a family member of mine, my own brother. My brother was raised in the same home I was, and he wasn't such a great, nice, likable guy, even when he was healthy. My brother was diagnosed with AIDS and dementia set in in the latter stage of his life. He was living in a room at that point, with dementia, with jars of feces and urine, his clothing all in bags, bugs flying through the air. When he walked the streets, people stared at him. People refused to give him service. He looked like he was dead. He would have seizures and blackouts consistently.
Tenants in the building complained about his presence. The smell of his apartment just permeated the whole building. He was arrested several times. He would go to the airport and try to get to Jamaica without any ID or without any money. He couldn't understand why it was so difficult for him to be able to leave this country. Police would arrest him. They would call his family and they would ask for us to come pick him up. We would ask that a doctor go and visit my brother in a jail setting and determine his competency. Well, the doctors didn't want to do that, including my brother's own doctor. It took too much time; they weren't prepared to travel all the way to Etobicoke. The police certainly didn't want to hold him, because he was too disgusting to look at.
Finally, because of our name -- the Capponi name has some clout in the mental health care system -- we were able to get my brother formed and brought into hospital. Once his dehydration was taken care of and he was deemed medically fit, even though he was in the final stages of AIDS, he was deemed competent to make the decision that he didn't want any intrusive medical stuff happening to him, and we all agreed with that.
However, we were very concerned about my brother's mental health status. The psychiatric ward certainly didn't want a stinky, dying man on their unit. We had to do a horrific amount of advocacy to ensure that my brother did stay in hospital and avoided dying frozen to death on the streets. My understanding, in dealing with public health workers, is that a lot of people with AIDS develop dementia and that part of the dementia is a lack of impulse control. Folks end up in jail, dying in jails. This is unacceptable. Where is the moral responsibility?
My brother was treated so horribly in hospital. The last two months of his life he was secluded, kept in a room far back from the rest of psychiatric ward; the staff of the ward would sneer at us. Really, in my brother's case, he was in hospital against their will, not against his will. He was not encouraged to participate in programs. His diapers weren't changed. He had genital lesions, and he would sit for 10 hours and not be changed. This is a hospital with a good reputation here in the city of Toronto. The day he was finally transferred to Casey House, to a place where he could get decent care -- I can't even talk about that day without getting emotional. It was gross.
I want to remind this committee, especially Mr Parker, who has asked the question, why is the Advocacy Act so important to my community, for the reasons I've already stated, and maybe I'll just state a few more cases. The head of psychiatry at the University of British Columbia -- there's a big case. There was an esteemed doctor whom everyone trusted, who probably talked the same line as the Ontario Psychiatric Association. He talked about alliances, he talked about trusting doctors, he also talked about distrusting clients and distrusting patients. How many women did he torture and abuse before he was brought to trial? How many women were ignored by other so-called professionals?
I also want to talk about homes for special care. This government made its first announcement that the Advocacy Act was going to be repealed and that finally trust would be back where it belonged, in the hands of families and in the hands of the medical profession. In the very same paper, in the Toronto Star that day, there were criminal charges pending at a home for special care where staff were found to be spending the pin money of the residents living in that home. Where was their moral responsibility?
It has been proven and well documented that the level of vulnerability increases the prospect of a person being abused. That doesn't exclude doctors, service providers and hospital workers. We also need to think about why people end up in the system, especially in the mental health system. When we look at women in particular, why do women end up in the mental health system? I would suggest that often -- not always, but often -- it's because of families. Yet we're supposed to trust families. This government today does not trust doctors. We're revamping the whole OHIP system because the government talks about doctor fraud. Yet my community, a vulnerable community, is told to trust doctors and to trust our families. This to me is really schizophrenic.
A country, a province or a state is judged by others and historically by how it has treated its vulnerable peoples. I implore this committee to think about the proposal submitted by David Reville. I implore this committee to think about the conflict of interest inherent in giving hospital staff the role of telling people their rights. I remind this committee of the public trustee's office and the auditor's complaints of how public trustees' offices have been run, some of the flagrant stuff that's gone on in those offices. To say that hospital staff should tell us what our rights are is tantamount, to me, to having no rights.
The business council and our member businesses have witnessed at first hand the impact of role modelling and empowering, when members of my community see other members of their community coming from their experience, speaking up and doing well. Our community is fed up with going to people who are paid to take care of us. We want to go to members of our own community when we need to. For us, "your best interests" are words that create much anxiety, panic and fear. I don't want anyone to say what's in my best interests, and if I'm at a point in life when someone does have that ability to say what's in my best interests, I would hope that individual would come from a community or an experiential base such as mine.
I want members of this committee to think about putting trust back in the hands of the families. What happens when families die? What happens when your parents die? Who's there to care for your child? Presumably, all families would want their child to have the ability to care for themselves. If they are not able to care for themselves, you would want the best person there to represent your child.
My community talks about poverty of soul, the loss of hope and the loss of opportunity, and total dependence on other people, people who do not understand where you come from, where you've been and what you're bringing with you. I suggest that members of all disabled communities have expertise, members of disabled communities have been service providers, members of disabled communities understand the barriers when trying to implement rights.
When this government came to power it claimed that the Common Sense Revolution would not impact disabled persons. I witness this impact daily. Unfortunately, we are the have-nots. I don't believe this government is a caring government; I don't believe this government cares about my community. You're setting out on a fiscal agenda that does not allow for human rights and does not allow for moral responsibility. If Bill 19 is enacted without a component of self-help advocacy, I believe this government is setting up many, many thousands of people in the province of Ontario to be abused. Thank you.
1050
Mr Ron Johnson (Brantford): I want to thank you, Ms Capponi, for your presentation. It certainly contained a number of suggestions and ideas and thoughts that I know we're all going to take very seriously. I want to say that by virtue of your presentation today, you have proven yourself to be a very strong advocate for the people you represent, some of the underprivileged and some of the vulnerable. You should certainly be congratulated for your commendable efforts in that regard.
I want to say at the outset that this government does believe in advocacy. In fact, we're very strong proponents of advocacy. The problem we have is that we disagree with the approach to advocacy that the previous government took, and that's really where we're coming from. A lot of people have sat in the chair you're sitting in, have come forward, including, I might add, Ms Taylor before you, who understand that advocacy isn't about government bureaucracy, that you can't provide advocacy service through a government bureaucracy, that it's the grass-roots people, the people in the communities such as yourself, who can best do that. We recognize that.
What we want to do is come up with a plan and some suggestions, through ideas we're getting from people like yourselves and Ms Taylor before you, to foster that, to help grow. We believe we all have a responsibility to advocate on behalf of those who are less fortunate, and we want to tap into that and we want to use some of the suggestions we're getting at these hearings to come up with a solid plan to do that.
I know that a lot of the things we're looking at and things we've heard in the past are that government's role in terms of advocacy could really be defined as support services, possibly providing some training for those who are going to provide that kind of advocacy work. That's really where we're coming from. It's the approach. We support advocacy in a big way; we're behind it. We just feel that government can't do everything and government doesn't necessarily achieve the best results. The best results come from people like yourself, and that's really what we're trying to foster.
Ms Capponi: Thank you for your comments. I'd like to agree with you, but I ask you, if that's so, if government doesn't really belong in the business of advocacy, why was the act repealed? Why is the commission almost dead? Why would this government suggest that staff in hospital advise patients of their rights? Inherent conflicts there, inherent. Are we all so la-la that we think all the staff in hospitals are kind, generous, wonderful people, that evil people are only outside of hospital? These are the kinds of issues that the government needs to do some more learning about and speak to a lot more people.
Mr Ramsay: Thank you, Diana, for your presentation. The words coming from my colleague on the government side are very nice, but I can understand why you feel abandoned, because as the government has decided to repeal the Advocacy Commission, it has not, as you know, brought forward anything to replace it, has not made any commitment, such as has been proposed, that maybe $3 million might be able to do the job, and to work with people in the community; just saying that maybe some time after this process, it will come up with something.
I agree with you. I do not think that $3 million is too much to put into the advocacy community of Ontario to ensure that there is coordination, to ensure that there are quality standards, to make sure that there is the adequate training for people to do the job and to make sure in the end that there's accountability, so that we know vulnerable people in Ontario are being protected.
I just want to tell you from the Liberal Party, the official opposition, that we will be pushing the government to bring in a replacement system.
Mrs Boyd: Thank you very much for your presentation. Did you regard the Advocacy Commission as government? I understood what you were saying as quite the opposite.
Ms Capponi: No. I was told it was supposed to be hands-off, yet there's an election and the commission is gone, and here we are yet again. It was sort of outside of government, but was it really? My understanding is that for the last few months of the commission, they were frozen from doing anything, so that's like a façade.
Mrs Boyd: Yes. They didn't really get a chance to do anything except the rights advice, which your examples show us very clearly is needed. That's one of our concerns, that the rights advice is not there.
The other aspect: It's all very well to say, "Well, you're a great advocate," but you know what you went through. You had no right of entry, you had no right to access to records, you had no authority whatsoever on which to act, even when you were a member of a family. Your story about your brother ought to really give us pause because it shows us quite clearly that the medical profession doesn't even listen to families.
Ms Capponi: That's right.
Mrs Boyd: And without the kind of empowerment that's there, it's very difficult to really act on behalf of someone, isn't it?
Ms Capponi: Yes, it is. I've got to say in terms of myself being a powerful advocate, how unfortunate for the thousands of other people out there who don't have the skills or haven't been where I've been in order to be able to get my brother to stay in hospital. What about all those other folks who don't have advocates, right? How can we train our own communities to advocate for ourselves? How can we support that? How can we use members of the disabled communities to be rights advisers? Those are the kinds of things that the Advocacy Commission is suggesting in its much toned-down proposal and I certainly urge that this committee look at that very seriously. Let's put a per capita on the $3 million compared to how many disabled folks there are in this province; a very small amount of money we're talking about.
Mrs Boyd: Quite frankly, even the $18 million was a very small amount of money, wasn't it?
Ms Capponi: Yes.
Mr Marchese: Ms Capponi, I just want to thank you for your presentation. Some of us are very aware of all the work that you've done in the field of advocacy for vulnerable people. Mr Johnson says the government's role is to provide support services to people. If that's what they're doing, we're in trouble, because they're cutting away at every imaginable support service one can think of. So if they don't provide the advocacy and at the same time they reduce all the support systems for people like yourself, we have a problem.
It is our view that the government has a responsibility to advocate on behalf of vulnerable people, because if they're not doing it, then we're at the mercy of all of the problems that you spoke about.
Ms Capponi: That's right.
Mr Marchese: Because who will take care of those people who you mention in your brief and countless other people mentioned as great examples of how systems abuse people? They no other recourse. You take the rights advisers away and who is left to deal with them? As they say, caring families and the good doctors that are there in the system. You pointed out that, from time to time, the good families are not there and that, from time to time, the good doctors are not there either. Then what are you left with? You're left with the government saying: "Sorry we can't help you. It's not our job. Sorry we have to cut because the budgets say we have a serious deficit, so what can you do?" So they say they like advocacy and support it, but they don't really mean it.
I just wanted to agree with the position paper you put forth and I hope the government listens to people like yourself who speak about other vulnerable situations. You're one of the people who survived. They don't understand that. They think that everybody out there is probably like you. But you survived difficult situations. Not many are able to survive those situations. It's for that reason that we needed a commission that does education, training, and deals with systemic problems, and that we needed rights advisers to deal with the abuses you spoke of. Thank you for your presentation.
The Chair: On behalf of the committee, thank you, Ms Capponi, for your presentation.
LEARNING DISABILITIES ASSOCIATION OF ONTARIO
The Chair: Our next submission is the Learning Disabilities Association of Ontario; Sharon Bell-Wilson, assistant executive director. Welcome.
Ms Sharon Bell-Wilson: I talk fast. Thank you, Mr Chair and members of the standing committee on administration of justice. The Learning Disabilities Association of Ontario is pleased to be provided the opportunity of making a presentation to you regarding Bill 19.
LDAO is a voluntary, non-profit, charitable organization that has been the central voice for persons with learning disabilities, some 10% of the total population, in Ontario since 1964. LDAO's mission is the attainment of a society in which persons with learning disabilities are enabled to reach their full potential. LDAO is the pre-eminent advocate on behalf of persons with learning disabilities in the province. Through our 48 local associations, we work tirelessly to protect the rights of persons with learning disabilities in all walks of life.
1100
In all civilized societies there is a desire to protect the most vulnerable members. These vulnerable individuals tend to be children, people with disabilities and others who have been disadvantaged by their situation. In many countries such protection takes the form of a paternalistic charitable system, where persons who are vulnerable rely on the philanthropic impulses of the less vulnerable. Such a system does not usually allow for the process of empowerment and enablement whereby vulnerable persons gradually become less vulnerable.
Many people over the past decade have concerned themselves with creating such a situation for the vulnerable persons in Ontario. Foremost among those was the late Father Sean O'Sullivan, who in his report You've Got a Friend proposed a formalized advocacy system for Ontario.
In 1992, LDAO presented its response to the original Advocacy Act, Bill 74, at which time the primary focus was the definition of vulnerable persons, the role of the Advocacy Commission, and the issue of awareness and training. LDAO participated in the process of establishing the Advocacy Commission and had high hopes that, once the process was fully in place, persons with learning disabilities would be enabled to take control of their own lives.
Who are these people with learning disabilities? Learning disabilities are neurological in nature and they are manifested in difficulties in any of the following areas of functioning: visual processing, auditory processing, fine motor processing, vocal expression, space orientation, time management, balance, coordination, social dysfunctions and setting priorities. Some common characteristics of learning disabilities include difficulties in reading, writing, spelling or mathematical abilities; poor short-term auditory memory, which means they hear inaccurately; directional confusion between left and right or east and west; sequencing difficulties, such as alphabetical order, months of the year, seasons, tables, lists of instructions and so on; takes spoken and written word literally -- does not understand nuances.
It is not always easy to identify persons with learning disabilities. For example, an individual who is skilled in language may find anything to do with mathematical calculations, such as balancing a cheque book, a virtual impossibility. By the same token, a brilliant scientist may be completely unable to spell any word.
Research results indicate that learning disabilities affect at least 10% of the general population and cut across all ethnic, linguistic, religious and socioeconomic boundaries. However, it is worth noting that learning disabilities affect males four times as frequently as females. For example, out of every 10 persons identified with learning disabilities, eight will be male and two will be female.
Talking about vulnerability and learning disabilities for a minute, one might ask what is it that makes persons with learning disabilities vulnerable? Consider the following:
A disproportionate percentage of young offenders, between 60% and 80%, have been or may be identified as having a learning disability.
Learning disabilities are implicated in at least 50% of all teen suicides and suicide attempts.
Adults with learning disabilities are more habitually unemployed, often unable to hold a job for more than three months.
Given these examples and the characteristics of persons with learning disabilities previously outlined, there should be no doubt as to vulnerability or disability. The fact is that persons with learning disabilities have difficulties learning and applying the rules and conventions which govern our daily lives. Therefore, their vulnerability and disadvantages stem both from their innate characteristics and from society's response to them.
You only have to review the report of the Ontario government's interministerial working group on learning disabilities to note that there is significant systemic discrimination against persons with learning disabilities. Since that report was published, things have not improved and the inequity continues. With the repeal of the Advocacy Act, it is now unknown whether vulnerable persons, including persons with learning disabilities, will have access to a process for advocating on their own behalf.
Bill 74, with its sole emphasis on advocacy, was about 15 pages in length. Bill 19, a document of more than 100 pages in length, mentions advocacy about three times in total. It would appear that there is some disparity as to the level of importance placed on advocacy, despite the percentages of vulnerable persons in Ontario. One cannot help but wonder to what degree the need for advocacy was comprehended prior to the blanket repeal of the act.
It would appear that the main thrust of the repeal of the Advocacy Act is the elimination of the Advocacy Commission. Perhaps the Advocacy Commission and the proposed process were not the best or most effective ways of addressing the advocacy needs of vulnerable persons; however, we strongly urge that Bill 19 be amended prior to third reading by indicating what is going to be available to vulnerable persons in meeting their advocacy needs.
To that end, LDAO would like to offer some recommendations for alternatives for vulnerable persons in a post-Advocacy Act era, the first of which is the strengthening of the Human Rights Code. The Ontario Human Rights Code protects persons with disabilities from various forms of discrimination and guarantees accommodation rights for persons with disabilities. The 1989 guidelines for accommodations should become part of the code or at least a regulation under the act.
The second is the enhancement of the advocacy process within the Human Rights Commission. For many, the process of filing a human rights complaint is an exhaustive, frustrating and subsequently unsatisfactory process. There are unexplained delays that resulted in complaints remaining unresolved for years. In order that the Human Rights Commission route may be deemed a viable route for vulnerable persons, the necessary resources must be allocated to the Human Rights Commission to reduce the backlog of current cases, while ensuring that new complaints move smoothly and steadily through the system. This action would clearly demonstrate a commitment to protecting the rights of vulnerable persons.
Third, the introduction of the Ontarians with Disabilities Act would be modeled after the Americans with Disabilities Act, which is considered "the most comprehensive and far-reaching piece of anti-discrimination legislation for persons with disabilities in the western world." This act would provide the government with an excellent vehicle in which to demonstrate its willingness to help vulnerable persons exercise their rights. ODA has the potential to be far-reaching in its protection as it relates to persons with disabilities in Ontario, enjoying equal opportunity protection under the law in all aspects of their lives. The process began with the introduction of Bill 168 in the last session of the Legislature. Although not perfect, it represented a good beginning. LDAO urges prompt action on reactivating the ODA.
The balance of Bill 19 focuses on the proposed amendments to the former Consent to Treatment Act and Substitute Decisions Act. While we regret the elimination of the process for the provision of rights advice and the anticipated greater independence for profoundly disabled individuals, we also understand the concerns of those who viewed these acts as anti-family. We know that there will be many others who will comment on these proposed changes in detail. We have chosen not to do so in order to maintain the focus on the advocacy needs of persons with learning disabilities. However, we do wish to reiterate the importance of ensuring that all those who work directly or indirectly with vulnerable individuals under any of this or other legislation are appropriately trained in recognizing and understanding the needs of persons with learning disabilities.
In conclusion, for persons with learning disabilities, LDAO has tried to meet the advocacy requirements to the best of its ability. This includes systemic advocacy, such as today's presentation on behalf of persons with learning disabilities in Ontario; individual advocacy, which involves accompanying families of children with learning disabilities and/or adult consumers who require assistance in the school, in the workplace, or in dealings with various other bodies; self-advocacy training for consumers, which involves formal training and completion of a workbook as a means of helping consumers advocate for themselves. Understandably, LDAO, with limited human and financial resources -- I will note here that we are 80% to 90% funded through public donations -- has difficulties in meeting the growing demand for advocacy services from persons with learning disabilities. It was therefore our hope that the Advocacy Act would have complemented our efforts and provided the necessary support to other vulnerable persons in Ontario.
LDAO fully intends to continue providing advocacy services. While LDAO regrets that the Advocacy Act did not have a chance to demonstrate its worth, we remain hopeful that some government initiative will be enacted to inform, educate and protect vulnerable persons in Ontario, including the nearly one million persons in this province who have learning disabilities.
A former US senator once remarked, "People don't believe that government knows how to help or wants to bother." For the sake of all vulnerable persons, and in particular persons with learning disabilities in Ontario, LDAO urges this government to please bother.
1110
Mrs Caplan: An excellent brief. I really appreciate the points that you've made. The legislation does not require individuals to be told when they are found to be not able to understand and appreciate -- that's the terminology for consent. We've heard from a number of the professional colleges and others who feel it shouldn't have to be explicit in the statute. We've also heard from many others that they feel it should be in the statute. Some suggest an amendment to the regulated health professions legislation that would allow the colleges to set guidelines for how people could be informed. Do you have any view on which is a better approach, whether you'd like to see it in statute or guidelines under the regulated health professions legislation?
Ms Bell-Wilson: I guess my comment would be that really anything that places the need for education and informing as strong as it can possibly be is what we would strongly encourage. Obviously, being representative of an organization that for so many years has had such a fight in trying to get people to understand, first of all, what learning disabilities are and that it's not a bad thing to have a learning disability and that it deserves some type of respect across the board, we would be a strong proponent or strongly endorse any legislation at its full extent that would encourage any type of training and education.
Mrs Caplan: In fact the intention would be to encourage and require communication with individuals who have been told that they're not able to make their own decisions and also to inform such individuals of their right to appeal to the consent and capacity board.
The reason I'm asking this question at this time is we have some new information that arrived today in a presentation to the committee. The College of Chiropractors have said, and I'm going to quote from their letter:
"We are concerned, however, about a suggestion made during the second reading debate that the Regulated Health Professions Act should be amended to require colleges to issue practice guidelines or standards dealing with notification to patients about their rights under the Health Care Consent Act. We do not think such an amendment is necessary or desirable."
My concern is if we don't do it under the Regulated Health Professions Act and it's not in the Health Care Consent Act, how are we going to be certain that people are aware of their rights? And who should have this obligation since this legislation removes all requirement for rights advice?
Ms Bell-Wilson: Inasmuch as we are also very strong proponents of self-advocacy, we would certainly suggest that individuals be as aware of whatever it is that they need to be aware of, what their conditions are, what their rights are etc so that they can then know which directions they may wish to go. I think oftentimes we make assumptions about the incapabilities of individuals if they have a disability, regardless of what the disability is. "Oh, they cannot think for themselves." They can think for themselves if they are given the opportunity to think.
Mrs Caplan: I don't want to put any words in your mouth, I just want to make sure I understand what you're saying, and that is, you would support clarity in the legislation that would encourage communication so that patients would be aware of what was happening to them?
Ms Bell-Wilson: Yes.
Mrs Caplan: Just to pursue this a little further, there was an article in the Toronto Star, dated February 18, that was a review of complaints to the College of Physicians and Surgeons. I just had a chance to review this this morning and it talks about the number of complaints that related to communication breakdown. It says here, "The head of the college's complaints committee says a doctor's inability to communicate is often the underlying cause of a complaint." Certainly we'd like to see complaints reduced. So your point about education and training and need to understand this legislation has been enforced as well by the verdict of a coroner's jury in the Clemens case.
Very simply, do you think this legislation should have a clause in it stating the obligation of a person who does the evaluation, the professional, to have to tell a patient that they are not found capable of making their own decisions and also of their right to appeal, to encourage that communication and education? Do you think this legislation should have a clause in it that requires that?
Ms Bell-Wilson: Again, speaking on behalf of the population that I represent, I would think that that is paramount.
Mr Marchese: Thank you, Ms Bell-Wilson, for your presentation. I want to comment on some of the suggestions you made and other comments that you made here. With respect to your suggestions around strengthening the human rights, just as a reminder, this government repealed the Employment Equity Act, which we felt very strongly about. It was our way of saying we need to restore fairness to people who otherwise are not getting fairness in the workplace. We have a different view of fairness on both sides of this room.
They said they would bring back an equal opportunity plan. We never knew what that plan was. They talked about this plan but never resurrected it. I'm afraid it will never be resurrected. They now talk about they have something for advocacy in place. We don't know what that is. We'll never know, except we should help volunteers, I suspect. I don't know how they're going to help volunteers.
You talked about strengthening human rights, and they said they were going to put some money into strengthening human rights. I can bet my right hand there will be very little that will go into the Human Rights Commission. They won't put a cent into it. So as much and as useful as some of the suggestions are, I'm not sure that we're going to see anything.
With respect to the Human Rights Commission, it's driven by complaints. That's a problem with it in the first place, because we have to wait for someone to come and tell us we've got a problem. Then we've got to wait a couple of years to resolve it. So it's a problem to rely on the commission to deal with individual and systemic abuses. The suggestions are useful but we won't get much, and I'm not sure that's the solution either to some of the things we've talked about here today.
In terms of some of the other comments that you made, you pointed out that advocacy complemented the efforts of your organization. That's what we felt as well. We believe we need an organization in place, at arms's length, that has authority to deal with the issues of training, education and to deal with systemic problems. If you don't have that, all of our efforts, the few little dollars they might put, which I doubt, will be lost, because it won't be coordinated. There will be no way of keeping record or track of anything that we do.
I agree with the US politician who remarked, "People don't believe the government knows how to help or wants to bother." Because we don't hear from the government what they propose and because I believe they have an obligation to tell us what they propose, I am not quite certain that I want to believe what they say about, "We have something in place." But I agree with you that we should know what they propose as a way of dealing with the repeal of the Advocacy Act altogether and the commission.
Mrs Boyd: Do you think that the level of disability for many of the people that your association serves would make them incapable of understanding what was being proposed in terms of medical treatment or make them incapable of managing their own property?
Ms Bell-Wilson: If you recall, in my comment very early, as I was trying to describe persons with learning disabilities, I talked about taking the spoken and written word literally and not understanding the nuances. If you take that and couple that, for example, with the situation with regard to young offenders, we make certain assumptions when a person is standing before an authority figure and various things are being said. For persons with learning disabilities, the words are being said but they're not being processed the same way that we would assume they would be understood. So they're not picking up on the importance or the emphasis on certain statements or certain words etc. Does that make them vulnerable? Very much so.
1120
Mrs Boyd: So part of the advocacy function that you would see for the particular population you're concerned about would be the ability to apply to have someone declared incapable of making important decisions when that kind of disability presents itself?
Ms Bell-Wilson: First of all, I think it's very important that we understand what the person understands. You're saying to them, "This means your situation is" whatever, but making sure, and maybe it means constant repetition, constant reinforcement etc, to make sure that they do understand, and then if need be, that they have someone with them as an advocate if they are not going to be capable of advocating solely on their own.
Mrs Boyd: So in terms of consent to health treatment, for example, saying the words would not necessarily ensure that the person understood the consequences of treatment or lack of treatment.
Ms Bell-Wilson: No, they wouldn't, not a person with a learning disability, because as I said, they hear the words. The issue is obviously not their inability to hear but their inability to process it in a way that is understood, as you and I are speaking. For persons with learning disabilities, no, that's not necessarily going to be the case.
Mrs Boyd: So then I take it that both individual advocacy and systemic advocacy are needs that you see. Systemic would have been the primary thing in the Advocacy Act.
Ms Bell-Wilson: Very strongly.
Mr Ron Johnson: Ms Bell-Wilson, I want to thank you for your presentation today and I want to thank you as well for taking part in the stakeholder consultations that we held. I know that you had some very good things and positive things to say to us during those consultations.
I want to make a comment here with respect to the Human Rights Commission, because that's something you said that we need to strengthen, and we agree with you on that. In fact we're going to strengthen it by making it more efficient and more effective. That's really the goal of the government, and we're going to be looking at a number of ways to do that.
We agree, actually, with Rosemary Brown, former NDP member of federal Parliament, who says that throwing more money at the problem is not the solution to fixing the Human Rights Commission. She says that herself, despite what my colleague Mr Marchese thinks, and I happen to agree with Ms Brown that the answer isn't throwing more money at the problem.
I want to say too that with respect to employment equity -- and you're right, Mr Marchese's right, we did repeal that -- that discrimination is against the law under the Human Rights Commission anyway. I don't see how he tied the two together, quite frankly.
I want to talk briefly about a line that in your presentation which I found to be absolutely tremendous: "The LDAO is the pre-eminent advocate on behalf of persons with learning disabilities in the province. Through our 48 local associations, we work tirelessly to protect the rights of persons with learning disabilities in all walks of life."
I want to congratulate you and all 48 organizations for the fine work that you do in advocacy and I want to suggest to you that that's the goal of this government, to foster that kind of support in advocacy work. There's a great deal to be learned, I think, from groups like yourselves, and we look at putting in place some support mechanisms to help you with that.
I'm just going to briefly say something too. You mentioned the O'Sullivan report, and I want to quote you a piece of that report. This is what Mr O'Sullivan said in that report: "Primary responsibility for advocacy must remain with us as individual citizens, as families, as friends and as neighbours of Ontario's vulnerable population." He goes on to say, "Primary responsibility for advocacy education and the development and support of advocacy services is the proper role of government."
What I would like from you, explain, if you could, what your view is of providing the education services and the support that advocacy services and agencies like your own would use. What's our role as government in that regard?
Ms Bell-Wilson: The role of the government would be to complement the work, as I indicated in my report, that organizations such as ours are performing. One of the reasons I threw another little stat in there was to say: "We cannot do it all. We do a lot, but we cannot do it all." We don't have a lot of money. As a matter of fact, we have a program that right now has to do with some form of advocacy, the advocacy training I mentioned our organization is involved in doing for adults with learning disabilities. This funding proposal seems to be on hold at this point in time, so right now there are people we want to help that we can't help. So if you say, "What can this government do?" one of them would be to release the money.
The second one would be to complement in terms of -- if we move past the commission issue for a minute, there were other things that were suggested, like the training, training of persons to be advocates, but ensuring that the training is broad-based enough so it covers all situations or all possibilities. Again we put up our hand and say, "Don't forget persons with learning disabilities when you're talking about persons with disabilities." We are very strong in our belief in that type of training and that being a very major component in the area of communication.
Mr Frank Klees (York-Mackenzie): Thank you for your presentation. I just want to take the few seconds left to clarify for the record that we are very supportive of ensuring that advocacy does take place effectively in this province. It's unfortunate that members of the opposition on this committee repeatedly characterize this process as one of ineffectiveness and that they don't believe the government will in fact do anything.
I just want to assure you and others who have come before this committee that we are not here to waste your time, that we are here to listen to you, to get your positive input, and that we will -- we will -- act on those recommendations that we feel we can legitimately put in place in this province for vulnerable people.
Thank you for taking the time, and I regret that these proceedings are being characterized as anything but very meaningful.
The Chair: Thank you, Ms Bell-Wilson, not only for your presentation but for this very attractive brochure and folder contained therein.
Ms Bell-Wilson: We aim to please. Thank you.
Mrs Johns: On a point of privilege, Mr Chair: I have a copy of the letter from the chiropractic association. Could the clerk --
Mrs Caplan: It was tabled today.
Mrs Johns: Was it? Did you guys get it?
Mrs Caplan: Yes. You should have it. I got it in my package. I think everybody received it.
Clerk of the Committee (Ms Donna Bryce): It was sent to your office.
Mrs Johns: I haven't been there yet. Thank you.
ONTARIO ASSOCIATION OF NON-PROFIT HOMES AND SERVICES FOR SENIORS
The Chair: Our next presentation is the Ontario Association of Non-Profit Homes and Services for Seniors, Carol Shaw, president. I understand that your brief will be coming in writing, so we will be obtaining that. I'd ask you to identify yourselves for the purposes of Hansard.
Ms Carol Shaw: Thank you, Mr Chairman. We do apologize for the missing brief. Maybe we call it a cost saving for us in the end, although it wasn't intended to be that way: We will not be paying the courier charge. We had couriered them to you last week, but apparently they didn't arrive on time. We apologize, and as soon as they are here, we understand they will be given to you.
I would like to introduce the group I'm with. First of all, I'm Carol Shaw, president of the Ontario Association of Non-Profit Homes and Services for Seniors; OANHSS, in other words. With me are Michael Klejman, our executive director; Paul O'Krafka, a past president of OANHSS and also the executive director of St Joseph's Villa in Dundas and a member of the interim advisory committee of the Attorney General regarding the Substitute Decisions Act; and Margaret Ringland, a member of our association, the director of regional relations and professional services for the association.
1130
I'd like to tell you, first of all, a little about our association. For 75 years the Ontario Association of Non-Profit Homes and Services for Seniors has represented non-profit, long-term-care providers in Ontario. OANHSS itself is a non-profit charitable corporation comprised of municipal and charitable organizations which operate a variety of programs and services for seniors.
Currently, OANHSS has over 200 members who provide services to 140,000 seniors across the province. Its members operate a full range of services, including homes for the aged, non-profit nursing homes, seniors' housing and community support services. In some communities, OANHSS members are the primary providers of both facility-based and in-home services. They pioneered many of the concepts that are so central to long-term care today: supportive housing through private home care, group homes and satellite homes; adult day programs; respite care and emergency response units to assist caregivers in the community; in-home community programs such as Meals on Wheels; and the idea of partnership and cooperation with community-based agencies.
The association offers its members educational and information services, as well as group services for purchasing, insurance, employee benefits and consulting. It also supplies support to its members by responding to important issues, including legislation, such as Bill 19, that materially affects its members.
During the 1992 hearings on the Consent to Treatment Act, the Substitute Decisions Act and the Advocacy Act, OANHSS generally supported the attempt to address issues such as loss of personal control over important decisions that may affect vulnerable, disabled or elderly persons.
However, the association also anticipated some practical problems in the application of the rigid, formal processes entrenched in the legislation. We were especially concerned that the legislation did not recognize the contribution of individuals, families, caregivers and agencies that care for and are relied upon to seek the best for those who depend upon them.
For these reasons, our members are pleased with many of the changes Bill 19 has introduced. They address our concerns about the rigidity of the processes included in the legislation and reaffirm the important role of family and friends in giving support to vulnerable people.
As well, we appreciate the proposals that alleviate the complexity that threatens the ability of health care providers to implement the intent of the legislation. In particular, the association supports the following mechanisms, which you'll hear about today, that reduce legislative barriers to care created by the Consent to Treatment Act and the Substitute Decisions Act. We also support the elimination of the Advocacy Commission and the Advocacy Act, as these two components have been taken to the extreme in both the act and the practice.
Mr Paul O'Krafka: Mr Martiniuk and members of the committee, it's a pleasure to be back here again and to see some very changed legislation. We've followed this legislation for the last three or four years from its inception, and we're glad to see a lot of what's been changed this time around.
The following comments explain why OANHSS members believe that the amendments represent significant improvements over the original legislation. First of all, we'll speak to the Substitute Decisions Act.
By repealing the posting of security for statutory guardianship and making it easier for families to remain as powers of attorney, rather than referral to the public guardian and trustee, the new legislation recognizes the important role of family members in caring for their loved ones. This is something our members have experienced for many, many years, that the vast majority of family members do care about the seniors for whom they're responsible and who have given them that responsibility.
The removal of the validation process for powers of attorney: Regulations to standardize and control the costs of capacity assessments will ensure that the process is less bureaucratic and more timely than would otherwise have been the case. In saying this, however, we hope that the government will retain responsibility for the management of capacity assessment, including the recruitment, supervision and training of the assessors. This function especially should be assigned to a ministry with experience in and an understanding of capacity assessment.
In the area of the Health Care Consent Act, by introducing the simplified consent process, removing the rigid rights advice process and eliminating the requirement for a family statement, the proposed amendments create a much more user-friendly and effective process for consumers and providers, and we think this is extremely important.
By expanding the definition of "treatment," including plan of treatment and including the withholding and withdrawal of treatment, the government clarifies its intent and ensures that interpretation across service disciplines and care facilities is consistent.
The acknowledgement that minor variations to the same basic treatment are acceptable and the continuation of treatment from one setting to another will ensure the provision of care in a more timely fashion. This is especially important for the elderly, who often move from a long-term-care facility to a hospital setting where their care is continued.
The enhanced role of the Consent and Capacity Review Board to deal with substitute decision-makers who are not acting in the best interests of the incapable person in giving or refusing consent-to-treatment decisions provides added protection to incapable individuals.
Other changes, such as expanding the list of substitute decision-makers, removing the seven-day wait for appeals, expanding the application of the hierarchy of substitute decision-makers to make more than treatment decisions, and expanding the liability protection of the health professional render the legislation much more workable for practitioners, consumers, families and caregivers.
We do, however, have some concerns and some suggestions on how the legislation can be further improved. As with any complex legislation, there are areas of concern, and the following comments and recommendations clarify our concerns and suggest modifications in the general approach or wording of the legislation.
Section 16, which amends subsection 27(3) and (3.1). OANHSS supports the inclusion of these clauses, but we are concerned that there is no threshold increase for the investigation and action on allegations of financial abuse of residents by substitute decision-makers for property decisions.
When families refuse to pay for such things as hairdressing, clothing, outings etc, residents' quality of life is compromised, even though the substitute decision-maker has control over residents' assets or have had assets legally transferred to them. Basic care continues to be met by the facilities. It's the extras that the residents don't get, and we think this is extremely important. We're not in the business of simply providing health care to our residents. We're in the business of providing a quality of life for them.
OANHSS recommends in this situation that a statement that the public guardian and trustee should investigate allegations of financial abuse by substitute decision-makers be included in the legislation.
Section 58, which amends subsection 87(1). The proposed amendment is unclear about the type of advice and assistance expected of volunteers. Volunteers would require appropriate expertise and extensive training in order to accept assignments and provide advice.
Our recommendation around this area is that the legislation include a provision that clarifies the role of volunteers in the advice and assistance process and requires the public guardian and trustee to establish volunteer recruitment and selection criteria, to develop a recruitment process and provide suitable position descriptions, training and supervision of volunteers so we can have the volunteers well trained in doing the right things.
Subsection 60(3), which amends subclause 90(3)(e.4)(ii). OANHSS is unsure of the rationale for this section and we're concerned that the proposed amendment may result in the application to become a guardian for personal care and property simply in order to access confidential client records for other purposes.
The OANHSS recommendation around this is that the government eliminate subclause 90(3)(e.4)(ii) or establish mechanisms to ensure that confidential and personal records are used only for the purpose intended in the legislation.
Mr Klejman will now comment on recommendations in the Health Care Consent Act.
1140
Mr Michael Klejman: I'll begin with part I, general section. Subsection 2(1) provides definitions. We are pleased to see that the definition of "evaluator" allows for categories of persons other than health practitioners to be prescribed in the regulations. Other non-health professionals, such as social workers, are often involved with clients and could be the best persons to evaluate capacity for the purpose of admission and consent decisions. However, this may be a new skill for them and some other health professionals.
We're recommending, therefore, that the regulation do indeed allow persons who are not health professionals to be evaluators in addition to health practitioners. Also, with the introduction of the term "evaluator" should come a regulation to ensure that evaluators meet the qualifications required of capacity assessors under the current legislation.
Furthermore, the terms "personal assistance services" and "personal assistance plan" are new. As such, they create confusion. No one is really sure what they mean. The term such as "activities of daily living" has been widely used for over a decade and in fact is referred in the regulations to the Consent to Treatment Act, subsection 3(1). The recommended phrasing of the definition reflects the clause in the CTA as well.
We recommend that the terms "personal assistance services" and "personal assistance plan" be deleted and replaced with "activities of daily living" and "activities of daily living plan" in the definitions and in part IV of the act. We suggest the following definitions:
"`Activities of daily living' means an activity that the person performs routinely and may include activities such as hygiene, dressing, ambulation, washing, grooming, elimination and positioning or other routine activity of daily living."
"`Activity of daily living plan' means a plan that sets out one or more activities of daily living to be provided to a person."
Exclusion (f) in the definition of treatment would then read, "Assistance with an activity of daily living."
Part II of the bill, treatment. Often, especially with the elderly in long-term-care facilities, quality of life is an essential objective. Substitute decision-makers should be taking this into consideration when making decisions. As well, the "best interests" provision does not include a decision not to treat or the impact on the quality of life should a treatment proceed. The current language implies that treatment should be given. While the definition of "treatment" has been expanded to include the withdrawal of treatment, the concept has not been continued to the "best interests" test.
We recommend that the proposed legislation be amended to provide the balance between treatment and non-treatment decisions, to recognize quality of life as an element in determining best interests.
Subsection 23(1). The proposed legislation does not explicitly include mental suffering or risk of mental suffering in the meaning of "emergency." Our members are concerned that people experiencing such suffering could also sustain serious bodily injury if treatment is not administered promptly. Therefore, we recommend that subsection 23(1) be amended to recognize severe mental suffering or risk, as well as physical suffering.
Margaret will continue with other sections of the bill.
Ms Margaret Ringland: In part III, the admission section, we're quite pleased to welcome the separation of consent to long-term-care admission and consent to treatment. The issue of tying treatment to admission, as was the case in the Consent to Treatment Act, has been extremely problematic, as many of our residents do not have ongoing treatment needs. Having said this, though, OANHSS has one comment and one recommendation.
OANHSS is concerned that consent to admission to a long-term-care facility is still tied to health care consent decisions. Admission decisions are often made by residents in our facilities for reasons other than the provision of health care or treatment.
OANHSS therefore recommends the addition of a sunset clause to recognize this anomaly and allow for changes in the Homes for the Aged and Rest Homes Act, the Charitable Institutions Act and the Nursing Homes Act and any other legislation that applies to care facilities to deal more appropriately with the admissions issue.
Part IV, in the personal assistance plan area: In keeping with the revisions suggested earlier to the definitions, this part of the act should be renamed activities of daily living. While the concept of the plan will be incorporated in our recommendations that follow, we believe this section should relate to the activities, not just the plan. Many of our residents are capable of deciding about specific personal activities, such as whether they want to go to the bathroom, when they want to eat. However, the same residents may not be capable of making decisions about their complete plan of care.
The capacity test for a specific activity decision is indeed much lower than the case for treatment or care plan decisions. In homes for the aged, staff make every effort to encourage residents to retain as much individual decision-making as possible and to have control over their care and environment.
The proposed legislation, by focusing on the plan, which requires a higher degree of capacity, could result in substitute decision-makers taking over these minimal decisions on daily activity from the resident. In saying this, we still support having the legislation provide for those few residents who cannot make even these very low-capacity decisions or communicate them by an effective means -- for example, residents in a stupor or in end-stage Alzheimer's.
In order to access substitute decision-makers without resorting to the public guardian, as is the case now for those who do not have powers of attorney for personal care, application of the hierarchy to obtain substitute consent is much more practical.
In the context of these overall comments, the following additional recommendations are made:
Part IV of the legislation provides a framework for activities of daily living decisions only in care facilities; however, the location in which care is delivered should not be the determining factor in setting the rules. Should not those in communities and hospitals have the same safeguards?
OANHSS recommends that part IV be reviewed to ensure that it does not inadvertently create a situation where the only means to obtain the necessary consent for care to an incapable person is to place them in a facility as defined by this act and its regulations.
As activities of daily living are listed as an exclusion from treatment under the definition section, it is important to recognize they are still subject to the principles of common law.
Therefore, OANHSS recommends the addition of a clause to state that this does not affect anything related to the giving or refusing of consent not included in the definition of activity of daily living in subsection 2(1).
Sections 55 and 56: The language as it's currently drafted needs revision to reflect the use of the new activities of daily living terminology.
OANHSS recommends the following: If a person is incapable with respect to assistance with an activity of daily living, consent may be given or refused on his or her behalf by a person in one of the following paragraphs, and we would then list the same list as is in section 18.
It is a fact that there are times when it may be impossible to obtain a substitute consent in some circumstances. In these cases, it is necessary to have a provision that ensures that we can continue basic personal care, such as toileting.
OANHSS recommends the addition of a clause as follows: "Despite any law to the contrary, if a person is found by a health practitioner to be incapable with respect to an activity of daily living, assistance with the activity of daily living may be given without consent if the health care practitioner has made reasonable effort in the circumstances but has been unable to obtain consent to or refusal of assistance with activities of daily living."
The Homes for the Aged and Rest Homes Act, the Charitable Institutions Act and the Nursing Homes Act, as well as the long-term-care facility program standards, have specific requirements regarding the use of restraints that exceed the requirements in subsection 57(4).
OANHSS recommends, therefore, that the section related to confinement, monitoring and restraints be removed.
1150
OANHSS members believe that as with the Consent to Treatment Act, the new Health Care Consent Act does not remove legislative barriers to timely care for patients suffering from mental illness. The fact that mental illness is not treated in the same fashion as physical illness stigmatizes again residents in our facilities who suffer from some form of mental illness.
Finally, regarding the regulations, we hope that the regulations previously drafted under the old restrictive legislation will be revised too, in keeping with the changes introduced in Bill 19, and we would ask that our association be consulted during the regulatory drafting process.
I turn it back to Carol.
Ms Shaw: That's our submission, ladies and gentlemen. We support, as OANHSS, the government's intent to move quickly to amend the consent and substitute decisions legislation and to repeal the Advocacy Act. Bill 19 contains the major principles that should be included in a consent law but requires some revision to ensure that there is clear legislative authority for substitute decision-making for all health care -- that is, with respect to treatment, activities of daily living or admission to care facilities.
We hope this information will assist the committee in its deliberations and provide suggestions that can be incorporated into the final legislation. As previously stated, our submission will be in your hands hopefully later on today.
Mrs Boyd: Thank you very much for your presentation. You make a lot of very good suggestions and I thank you for them.
I have a couple of questions. One of the things that worries me is that we see consumers of health care services consistently coming in front of us and regretting the cancellation of the Advocacy Act and we consistently see providers coming in front of us and saying, "Good for you for repealing the act." That makes me uncomfortable. Are you saying that you don't think there's a requirement for rights advice to people who have been declared incapable, and you think this act is okay when it doesn't give people the information that they've been found incapable?
Ms Shaw: Michael, would you like to comment? I think we all have a fairly strong feeling about this issue.
Mr Klejman: You may not be aware of it, but I am one of the 12 commissioners --
Mrs Boyd: I'm very well aware of it.
Mr Klejman: -- on the Advocacy Commission who has not been able to fulfil my role, and I'll be back here, I believe, on Wednesday.
No, we do not say in our brief that we are against advocacy, the need for advocacy. We are willing and are involved in discussions and consultations about alternatives to the model that was proposed through the Advocacy Act. So I think maybe we were remiss in not referencing that in our submission, but we do believe there is a role for advocacy and we believe very strongly that our members have been in the forefront of providing advocacy not just on behalf of the individuals but also their families and working with their families.
Mrs Boyd: There are a few other issues I'd be interested in hearing your comments on. First, do you think paid caregivers ought to be able to be substitute decision-makers; and second, were do nutrition and hydration fit into treatment versus activities of daily living, and where do we locate consent to nutrition or lack of consent to nutrition and hydration?
Ms Ringland: I think there are two types of treatment and activities of daily living. In the issue of nutrition, feeding someone, providing food, helping them to eat would be an activity of daily living. What they eat and special nutritional assessment and special nutritional needs would be in fact treatment decisions. So I think it's quite clear to providers which is which, and the same would be the case, I think you said, with hydration. Again, helping someone to take some fluid, to check on their fluid and make sure they get it and they can receive assistance with that are activities of daily living, but in fact, special requirements that they may need in order to enhance their hydration because they're not drinking properly would be treatment decisions.
Mrs Johns: I was just interested in your part IV discussions talking about the location and how you thought the definition maybe should be broadened. I guess the concern is, how do you broaden that and make controls and allow the process to move forward? Since we haven't seen your brief, I don't know specifically how you're amending it. Can you just talk a little bit about how you'd like to see the groups broadened?
Ms Ringland: I would think the way the act reads now it applies only to the facilities and to other care facilities defined by the regulations. I think our concern would be that in fact if you're in the community or you're in whatever location that isn't defined by the regulations, there wouldn't be access or there wouldn't be consideration given to your right to make decisions around your activities of daily living. We think there's no need for this section to be confining to facilities, that it could be opened up to wherever a person is provided services by health care professionals.
Mr Klees: Perhaps I can just follow up on that. There has been a suggestion made in the past that perhaps rather than defining it as health care facilities that it be termed, I think, a treatment plan; rather than treatment facility, a treatment plan. Would you be comfortable with something like that, and that would then apply to whatever facilities you're in as long as there has been a treatment plan defined?
Mr O'Krafka: Our understanding is, the legislation, as amended, picks up and allows for that and actually that was one of the things we were complimenting government on, was the continuity of that treatment plan and care plan.
Mr Klees: Okay. One other follow-up, perhaps. One of your members has had some experience with the commission itself. Could you just give us a couple of comments as to what you feel the effectiveness of the commission was and why you feel that should be changed.
Mr Klejman: I think the commission became very focused on certain types of activities and, frankly, it controlled under individuals with, first of all, vested interests representing their own interest groups and, secondly, not willing to look at the broader spectrum of the population and the service provider side and work in some sort of a collaborative way. It simply froze some members of the commission out of the decision-making process within the commission.
Mrs Caplan: Thank you very much. I would like to discuss with you and have your views on the differences between evaluators and assessors, and also from that aspect, you've rightly said that evaluators will be able to be defined by regulation, so they will not only necessarily be professionals as defined under the health professions legislation. Therefore, the concern that I have and I've expressed on numerous occasions is that the act must have an obligation to oblige evaluators, as it does assessors, to inform patients when they are not able to make decisions for themselves and also to inform them of their right to appeal. That is something that is an obligation of assessors who are assessing for the purpose of guardianship, but evaluators who are doing, I would say, a very different and more minor capacity assessment for the purpose of a one-time treatment or a series of treatments, as contemplated by the legislation, have no obligation. We've heard that several of the colleges, including the chiropractic college, are saying don't do it under the regulated health professions legislation.
Do you believe there should be an obligation in this statute that states clearly the obligation to inform someone who's been found unable to understand and appreciate the consequences and also inform them of their right to appeal? Should that be in this statute or is the RHPA a better place?
Mr O'Krafka: We're quite comfortable with it being in the statute and our recommendation around that was specifically that the evaluators have the same training that capacity assessors have, so that we're --
Mrs Caplan: That was my next question.
Mr O'Krafka: -- dealing with people who understand what they're dealing with.
Mrs Caplan: My concern, frankly, is that there are very few capacity assessors that are certified and I think it's unrealistic initially to have in the legislation that same category. There's also no requirement at this time for any training for evaluators; there is for capacity assessors from the capacity assessment office and I support that. I do think that the education that professionals receive who use their skills all the time to assess the ability of their patient to comprehend and appreciate treatments could be different than someone who is assessing for the purpose of long-term guardianship.
I support the differential between the two. I also think practically it would be impossible to make that a requirement of the legislation at this time. It might be a goal that you'd want to aspire to, but I'm not certain you would have enough time to have everybody made a capacity assessor. Do you have anything you want to say on that?
The Chair: Thank you, Mrs Caplan. I always do it to you.
I would like to thank you very much for your detailed and thoughtful presentation. I'm sure the committee appreciates it, along with myself. Thank you.
Ms Shaw: Thank you, Mr Chairman.
The Chair: I had two matters to raise, if I could, at this moment: Next week is clause-by-clause and I am suggesting -- and think it over during the lunch hour; if there are any objections to this procedure let me know or raise it -- that amendments should be in no later than this Thursday from all the caucuses.
Secondly, on the clause-by-clause, I suggest it may be unsuitable to do a clause-by-clause in room 151, being the Amethyst Room and televised, and I am therefore --
Mrs Caplan: That was okay for Bill 26.
The Chair: Well, I'm suggesting that we move it to a non-televised room for next week. Again, if you have any objections let me know.
The 1 o'clock appointment has been cancelled. We are recessed to 1:30 this afternoon. Thank you.
Mr Parker: Mr Chairman, before we break just one other point: Last week, Mrs Boyd asked for data on treatment decisions in the office of the public trustee and I have that information with me here that I'd like to table with the Chair. This covers the period from April 1995 through December 1995.
The Chair: Thank you very much, Mr Parker.
The committee recessed from 1202 to 1332.
RIGHT TO LIFE ASSOCIATION
The Chair: Good afternoon, members, ladies and gentlemen. If we can proceed, our first submission is from the Right to Life Association. Dr Barry, would you identify the people who will be making the presentation with you for the purpose of Hansard.
Dr Michael Barry: This is Mrs June Scandiffio, president of Right to Life Toronto. I'm president of Right to Life Mississauga. This is Mrs Gwen Landolt, the legal representative for Right to Life Toronto.
Mrs June Scandiffio: If I may, I'd like to introduce our committee. We have been looking at the history of this legislation and following it closely since 1991, when we presented a brief, and then again in 1992. Generally speaking, we are very pleased with a lot of the changes and streamlining, in particular the fact that families have been given more of a voice and a say. However, we do have some concerns of what we see as possible inconsistencies and our brief outlines them. On page 3, we have an executive summary and then there are more detailed positions within the paper.
We have two basic concerns, I suppose, one dealing with minors and the other dealing with either the incapacitated or the elderly patient.
Under the Consent to Treatment Act, there's no minimum age given for the person making their decision. Further, there's no provision for parents even being notified that a minor is seeking medical provision.
We have a number of concerns here. First of all, how well informed can informed consent be where we have, by the young person's very nature, perhaps the inability to understand the repercussions and the risks? Second is the fact that most people of course presume "health care practitioner" means a medical doctor, but not necessarily, as we know from the definitions within legislation.
If a young person appears before a health care professional and is under 16, perhaps there would be undue weight given to the opinion of that one particular person, and in fact perhaps then a conflict of interest, because the health care professional, if a parent is not notified or consulted, may in fact be the only adult making any input.
We see a real inconsistency in the rest of the legislation; for instance, the legislation for a substitute decision-maker. A person must be at least 16 years old to be designated as a person who is capable of making substitute decisions for someone when they become incapable, and yet there's no provision within the Consent to Treatment Act itself for that age. It appears in a number of areas and we've listed them in our brief. Certainly there's also a problem and a possibility of the whole legislation being unconstitutional, and that will be dealt with a little later by Mrs Landolt.
In terms of the consent to treatment, we're very concerned that, as far as we can see in our reading of the legislation, when a person is found incapable, they are not notified of the fact that they've been found incapable. To me, this is a very serious flaw. If in fact a doctor or a health care practitioner has found an individual incapable, at a minimum they should be notified that they have been found incapable and that there's a mechanism with the appeal. I think that's a real flaw that has to be addressed.
In addition, if in fact the person is found incapable and they themselves cannot understand this whole thing, there should be a family member who is listed there as well.
Under the "best interests" doctrine, and I'm just going very quickly through some of our major points, we've been concerned especially for the vulnerable who are on assisted nutrition and hydration. As you know, the ongoing concerns in Canada on euthanasia and assisted suicide have really been at the forefront. I know that the proposals made by this government do not have as the intention to bring in euthanasia through the back door, but in fact in other legislation in the world nutrition and hydration when assisted, or sometimes called artificial nutrition and hydration, can be denied. In fact, we have numerous cases in the United States in particular where the person has not died of their underlying illness but the fact that they were not given proper nutrition and hydration.
I would ask you to take a look on page 9, where there are a number of medical ethicists. Daniel Callahan is not pro-life by any stretch of the imagination, but given our economic concerns all across our country, budget restraints and so on, this isn't just an academic question, and I quote him:
"A denial of nutrition may in the long run become the only effective way to make certain that a large number of biologically tenacious patients actually die. Given the increasingly large pool of superannuated, chronically ill, physically marginal elderly, it could well become the non-treatment of choice."
We're delighted that you have moved nutrition and hydration from treatment to care, but in fact under the Substitute Decisions Act the substitute decision-maker can in fact still decide what care, and that's fine, but I think we have to make it eminently clear that nutrition and hydration should be basics of life. Whether you are an Olympic star or a person with multiple handicaps, in both scenarios people would die if they were not given nutrition and hydration. We have to be sure that we are not discriminating, particularly against those who cannot speak for themselves.
1340
If in fact we have a person who is capable, who does not want to have any more food and water given, that's one scenario. But we're talking about the incapacitated, and I think it has to be very clear; or those who are seen perhaps as better off dead or because they're an economic burden. All we have to do is look demographically. The problem is tough now; it's going to get worse in 2010. I'm sure I don't have to bring in the demographic studies, but if anyone is interested, we have all kinds to show that demographers across the country are increasingly concerned that we have a large number of people currently but there are going to be fewer young people able to work and pay taxes and a growing number of elderly. The problem is going to get worse. I think we have to make very sure that in fact we are looking after these people.
Getting back to the consent to treatment for the young, and then I will hand over to my colleagues for some of their comments as far as their professional expertise is concerned, on page 5 we've quoted Dr Carol Cowell, who again is not pro-life; she favours the option for abortion. In the 1970s, when she was working at the Hospital for Sick Children, she said:
"I would caution physicians against accepting carte blanche the `self-consent' of an adolescent girl 16 to 17 years of age for this abortion procedure....I continue to be astounded at the lack of knowledge of this group as to what is involved in a therapeutic abortion and its inherent risks....
"Paradoxically, when the age of minority was 18 years, there were fewer problems than when it was reduced to 16 years. The depth of understanding and knowledge of the average 16-year-old is best described as `impoverished' when compared to that of an 18-year-old....At the time of an abortion, the younger teenager needs more than ever the support of her parent (or parents) because abortion is a very lonely experience."
I can tell you from my own experience. I'm a high school English teacher by profession and I know that our young people are very bright and very articulate, but nothing of course has more of an impact than their experience, and the older they get, the more they understand implications and problems.
You will notice in our recommendations that even though Dr Cowell has 18 years, we are saying at the minimum it should be at least 16 years. Because if Dr Cowell found that 16-year-olds' ideas and information as far as risk is concerned were impoverished, things haven't changed that dramatically, I can tell you from my experience with young people.
The heartbreak that I find when I go out to speak at universities or community colleges, especially to adult or young adult groups, is that almost inevitably I'm followed into the parking lot by a young woman who perhaps had an abortion when she was 15 or 16 or 17. Very frequently they will say to me, "I had no idea. I hadn't taken any biology. I didn't know it was going to have the emotional impact," and so on. Now obviously not 100% of women are going to experience this, but I think we have to think very carefully of having some kind of age limit there.
I'll hand things over to Dr Barry.
Dr Barry: As Mrs Scandiffio said, there's much to be commended in Bill 19. There seems to be some concerted effort to restore the confidence in the professionalism and integrity of the treating physician -- I speak specifically being a psychiatrist -- and to restore the family and the close relatives as the most appropriate advocates for the sick. This I see as positive within the bill.
My problem, as Mrs Scandiffio has mentioned, is the definition of "minor" in respect to treatment. The act in fact refers to the age of 16 as the legal age of maturity in subsection 18(2) and in other sections, and I would trust that the absence of an age of maturity in the consent to treatment section is an oversight on the part of the formulators of the document. I would hope so.
We are all aware that the use of birthday as a measure of intellectual maturity has definite limitations. In the case of the definition of judgemental maturity in a minor, it is the best we have. No one objects to the age prohibitions based on sale of alcohol, cigarettes and minimum age for driving. It is a much more onerous responsibility to make a decision about one's own treatment. Even adults, from my experience, seldom make treatment decisions without conferring with other family members. My experience in psychiatry has taught me that making decisions in a vacuum, that is without as much family involvement as possible, often results in diagnostic error and undue harm to the social structure and harmony of the family.
This is especially true when treating an adolescent or young adult. Minors, in their struggle for autonomy, will often make a decision counter to their parents' wishes, willing to take the consequences after the fact, and these consequences are often disastrous.
Whereas in the last decade, a parent's rights and authority over the minor have been increasingly usurped by government, this bill could restore at least some of those rights and responsibilities, which the family have never lost. Governments for that matter and professionals, in an effort to be non-judgemental, make decisions devoid of any moral underpinnings, and it is up to the family to add the moral dimension to all decisions in the case of minors, and no one else.
That's all I have to say.
Mrs Gwen Landolt: Hello. I'd like to raise two comments as a lawyer. I'd like to bring to your attention a very important Supreme Court of Canada decision that was passed just a year ago. It's R(B) v Children's Aid Society et al, and in that case, the Supreme Court of Canada held that it is a fundamental aspect of freedom of religion, guaranteed by section 2(a) of the Charter of Rights, that parents must be notified and have knowledge and must be involved with the children's medical care. Mr Justice La Forest said:
"Although [in Canada, a parent's] liberty interest is not a parental right tantamount to a right of property in children, our society is far from having repudiated the privileged role parents exercise in the upbringing of their children. This role translates into a protected sphere of parental decision-making which is rooted in the presumption that parents should make important decisions affecting their children because parents are more likely to appreciate the best interests of their children and because the state is ill equipped to make such decisions itself."
Mr Justice La Forest goes on to say:
"I would have thought it plain that the right to nurture a child, to care for its development, and to make decisions for it in fundamental matters such as medical care, are part of the liberty interest of a parent," under the Charter of Rights.
In effect what they are saying is that if proceeding with Bill 19 as it is, it will inevitably be subject to legal challenge because of this recent decision of the Supreme Court of Canada saying that parents do have a fundamental right under section 2(a) of the Charter of Rights to have involvement in the medical care of their children.
It's amazing to me that this bill managed to be drafted without this being taken into consideration. It appears to be an oversight that they have neglected to do their research legally on this very important aspect of the situation.
The second thing I want to bring to your attention is the question of capacity of a vulnerable person. Under this particular legislation, I note that there is no criteria set out as to how a medical practitioner would determine the capacity of a patient. Under the previous Substitute Decisions Act, there was a criteria. For whatever reason, it was dropped in the present Bill 19, so that a medical practitioner would simply determine, on his or her own, whether that person has a capacity, and if they decide the person doesn't have a capacity, the only appeal is to a consent review board,
What puzzles me is that this legislation appears to have dropped out a whole section as to how does a person who's been deemed to be incapacitated know what to do, who's going to advise them. There seems to be a whole section removed. There's no protection for the vulnerable person and, significantly, there is no provision that the person's family would have, as a right, the power to go to a board of review. In other words, you've got a physician who may or may not have his or her own particular bias declaring that person lacks capacity. The only avenue of appeal is to go to a board. The only people who have a right to go to the board is the person who's incapacitated, and there's no provision to let him know that he has this right.
1350
The second thing is the physician himself; there's no place for the parent. There's no criteria. In other words, you get enormous unfettered power into the medical practitioner to make this absolutely earthshaking decision. There is a whole section missing to protect that person, because that person has no one to tell him that he has an avenue of appeal, and there's no provision for his family or anyone else to stand in and to protect him to let them know if it goes to the board, and there's no provision for his family with regard to the board.
Somehow, something has happened between the substitute consent act and this particular piece of legislation. Something was dropped out. Hopefully, it was inadvertent. But we have in effect that vulnerable person simply left high and dry once they're declared to be incapacitated.
Thanks very much.
Mrs Scandiffio: I'd like to end our formal part before the questions with just reiterating what our recommendations are; they are found on page 10 of our brief:
(1) The age of consent for minors be set at 16 years of age.
(2) That persons deemed incapable be notified of such findings and their right to appeal to the Consent and Capacity Board.
(3) The "best interests" of an incapable person should be based on a presumption in support of treatment. Provisions should be made for application to the Consent and Capacity Board if cessation of treatment is desired. Right now the reverse is true.
(4) Conscience clause, which I have not touched on -- under the liability from protection there is quite an onerous fine levied, and as with the abortion law, we think that health care practitioners and substitute decision-makers should be able, without penalty, to refuse to implement instructions that will cause the death of a patient when such contravenes their conscience. There simply should be some form of conscience clause within the legislation.
We know that all of the people who have been presenting to this committee have the best interests of the citizens of Ontario at heart, and I've been very impressed with the research that's gone into the presentations at this committee. I know you're here to protect all people in Ontario, but I hope you will give special attention to the most vulnerable, the very young and the very old.
Mr Klees: Thank you very much for your presentation. I'd like to just take a minute to pursue your first recommendation with you, with regard to the age of consent for minors to be set at 16.
As you know, there is no such age now, and there are those who would say that if you insert that age of 16 many young people who find themselves in a situation of having to consult a doctor because they feel they may be pregnant or may have a venereal disease, choose not to if in fact their parents were to be brought in. In addition to that, there are young people today in society who don't have parents to turn to. They are homeless and so on.
Having said that, I don't disagree with you personally, but we need some help with this. How do you address that?
Mrs Scandiffio: Certainly in terms of the young people who are street people, who don't have a home or an adult that is there responsible for them, I think we have provisions now under the child health care act, but more importantly perhaps we should make provision for unemancipated and emancipated minors. In other words, make a distinction.
According to a survey done in 1993, 86% of our adolescents live in fact with an adult who for the most part we presume has their best interests at heart. Obviously, not all parents are going to be the best of parents, and we have provisions for that under the Child Welfare Act and so on with children's aid.
But the idea of making legislation for that 14% of the population where we could protect them as well by having different classifications -- in other words, that I as a parent am responsible for my children who are living at home under a certain age. And to put just the responsibility on the parent and not have any of the -- we presume that there's an adversarial role here with the parent and child, and from my own experience, we've all heard kids say, "My parents will kill me." As an English teacher, if a student has failed a test and I say, "I think I'm going to have to call your parents," they're not going to be very pleased about it. I'm not doing it to get the kid into trouble, and if I felt in fact that the student really was going to be physically abused, I would do something else. But the fact remains that most parents have the best interests of their children at heart, and we want to work in concert. It's not a matter of parents against kids, but in fact that the family should be a unit.
The loneliness of a girl who is faced with this situation is palpable. I've been on the phone with girls who are calling me, who are pregnant and they don't know what to do. The parents pick up the extension saying: "Will you get off the phone? You're always on the phone," and I'm thinking if these parents even knew what this conversation was about. It's very, very difficult for this young person to make this decision, and I don't think it's fair for them to have to make it alone.
I encourage dialogue and will go with them, if they want, to talk with their parents, to say that you need people at this point. Parents are going to be disappointed, but they're not going to hate their kids. In fact, they will feel that they have failed as a parent rather than blaming the kid. That's been my experience.
Mrs Landolt: I'd like to mention too, if I may, that the way to get around that problem is to put in the legislation that there would be a presumption of incapacity under 16, but that is always a rebuttable presumption, and there may be extraordinary circumstances that may denigrate from that and change the capacity. But if you put in "the presumption of incapacity under 16," it can be rebutted in extraordinary circumstances, as a way to get around that problem.
I just don't think that a physician, who doesn't even know the child, and the child doesn't even know its own medical background, should arbitrarily decide that, "Oh, yes, they have the capacity and, therefore, in my view, they should get this or that," and the parent, who has known the child since the moment of birth, is totally cut out of it.
The other problem is --
The Chair: Thank you. Sorry. Excuse me, we have to move on to the next caucus because of the time constraints. I'm very sorry for interrupting you.
Mr Ramsay: I'll probably give you an opportunity to continue, because this is the area I'd like to talk about too, the age of consent.
I'll tell you, as a legislator, it's difficult at times, as Mr Klees said, balancing one's own views, the various beliefs we hear when you're on committee, what our perception is and maybe also what's realistic out there. It's difficult for us. I'm not sure we should have an age limit set.
I speak as a father of two daughters who are now young women, and also a person who believes that children grow up too fast, but I know in the best of families and in the worst of families, there are some things that sometimes don't get communicated that should be. I wish they were, and in an ideal world, they would be.
I'd hate, as a legislator, to put something in legislation that might prevent a young person from seeking the medical help they possibly need because of the embarrassment of the eventual confrontation of whatever is happening with that child with the parents.
So it's difficult. My heart goes out to you. I understand where you're coming from, but I guess our job here is to try to find some balance.
Mrs Scandiffio: If I may comment on that, to me the heartbreaking thing with a lot of these teenagers, and I find it kind of mind-boggling as a parent myself, is that the young women who find themselves pregnant aren't so much afraid to tell their parents that they're pregnant; the bottom line is they say "Well, then they will know that I have been sexually active." It sounds ridiculous, but that's kind of the way they're thinking, that "I'm going to disappoint mommy and daddy."
The pregnancy is kind of a symptom of the other problems, as it were, and my concern is the making the decision, as Dr Cowell herself said, that the long-term implications, I find for the young women in particular -- I noticed in the Toronto studies of health that for young women, a lot of times the father of the baby or their partner is a lot older. That makes it even worse. To me, these young girls that -- and I'm speaking from my own experience of the young women who are calling us or coming to visit us -- there's no one to advocate for them. If the girl is 15 and going out with a boy who's 19 or 20, this is not an equal relationship, and often the father will be pushing for the abortion because he doesn't want to take any responsibility, and he's scared too. I can't fault him. But to say that this 14-year-old is not being either pressured or coerced, especially if she doesn't have any adult who knows her to even say what the options could be for her, to me is not liberating these young women but in fact victimizing them. That's heartbreaking to me, because often the partner will be the one who's pressuring. All studies will show that the partner in any pregnancy has the most say as to the outcome of the pregnancy.
1400
Mrs Boyd: Thank you very much for the presentation. I share your concern around nutrition and hydration. I'm not sure your solution is a solution that meets the need, but I want you to know that I'm quite concerned about that. I think it is a loophole in this and I'm curious to know whether you think putting nutrition and hydration in some special category might solve the problems. It is a very difficult issue.
Mrs Scandiffio: Certainly if the person is imminently dying and their body can no longer absorb and utilize, obviously we are not there to prolong the dying or the suffering. That is not our concern.
Mrs Boyd: But we know it happens in other circumstances where someone is just taking too long and people get impatient, don't we?
Mrs Scandiffio: That's right, or people who are in a persistent vegetative state where, especially again with health care costs, these people can live for a long time; they're not on any extraordinary respirators or anything else; they're just simply being given food, often with the nasogastric tube to save money, not because they couldn't swallow initially. It becomes a real problem.
Mrs Boyd: On your situation around children, I would suggest to you that the case you cite, where the child was quite young and it was a case where the children's aid society had taken the child and had made different decisions than the parents, leads us right back to the same old issue. Your solution to the problem around dysfunctional families and where children couldn't get support was to give them to the children's aid society. The case you cite is exactly the reason why none of the parties here believe that's the solution to the case, because we can't protect that child under those circumstances.
It is a real conundrum. While all of us would want you to know how much we respect the concerns you're raising, the problem is that in looking at this over many years, the issue of presumption of consent for children and young adults has been one of the things we generally have agreed on among the parties here because of the problems of coming up with any other solution.
Mrs Scandiffio: I guess the concern, and I appreciate that you can see where we're coming from, is that for a lot of these young people, certainly when you look at different jurisdictions where they've legislated age of consent for particular procedures, certainly in terms of illegitimate births and abortions, both have gone down when parental consent was required. These are long-term studies.
I don't want to make this an adversarial thing between the parents and the child; I don't think that's the role at all. But what happens with a lot of these young women is that the parents are there to pick up the pieces after the fact. Eventually they find out about the abortion -- it may be a long time down the road -- and to me, it just doesn't make any sense that we don't have some kind of way to help these young people understand that the bottom line is that their parents love them. There are going to be some exceptions, but we can't make laws for the exceptions.
The Chair: Thank you very much for your thoughtful presentation.
Mrs Scandiffio: If anyone is interested in any further background or research, please feel free to contact us. We'd be happy to provide it.
ONTARIO AIDS NETWORK KINGSTON AIDS PROJECT
The Chair: The next submission is the Kingston AIDS Project, Paul Waltenberry and Mark Bulbrook. Welcome.
Mr Mark Bulbrook: Good afternoon. My name is Mark Bulbrook. I'm the executive director of the Ontario AIDS Network and represent the Ontario AIDS Network this afternoon, along with Paul, who is representing particularly the Kingston AIDS Project.
The Ontario AIDS Network is the provincial umbrella organization representing 48 member agencies which are all AIDS service organizations providing education and support throughout the province to people living with HIV, affected by HIV, and most targeted to the risk of the spread of HIV.
As well as being the executive director of the Ontario AIDS Network, I'm also a person living with HIV, a person living with haemophilia and a person living with hepatitis C, and have a lifetime of experience around advocacy and consent to treatment and hospitalization and vulnerability and all those things.
I'm going to be somewhat brief. We're dealing with three specific areas of the act today, the first one being around consent to treatment. The Ontario AIDS Network firmly believes that the consent to treatment beyond the ability of the patient belongs to the partner of the patient, where a partner is involved, and this includes same-sex spouses as well.
To allow the decisions of treatment to be left with traditional family members when the patient may not have even disclosed their illness -- that being HIV infection -- or the fact that they're gay and their sexual orientation to their family members throughout their lives, to then expect those same family members to step into a situation and deal with consent to treatment for this person is not only unrealistic, it is wrong. It should be the privilege of certainly the partner of the patient, the person who knows the patient best and the person that this patient has been able to disclose both his sexual orientation and HIV status to.
I ask you to try a bit of an illustration on this, because it is an area that a lot of people have a difficult time comprehending, but if you can for just a few minutes imagine yourself as a gay man, that you are now in your mid-30s, that you have hidden your sexual orientation from your family, including your parents, all of your life because of the stigma and discrimination associated with homosexuality, and then on top of that you discover that you're HIV-positive, and you have a partner. Imagine the trauma and the impact this would have on your life and then trying to disclose both of those double whammies, one of which means that you're in for a very long, chronic illness leading to death, and having to inform your parents and your family of all this information all at once.
When it comes to the consent to treatment, the person who has the right and the privilege of taking care of that person, without question in the mind of the Ontario AIDS Network, is that person's partner, and that person being a same-sex partner.
Around the capacity review board, the OAN strongly disagrees with the proposed amendments which see one person who may have a potential prejudice towards the patient due to sexual orientation or other as having the sole authority on judging the patient's ability or capacity to make his or her own decisions. We would support the continuance of a capacity review board of more than one individual to make that judgement of that person's capacity, and that review board would have the final say over the attending physician.
The third area is the provision of a rights adviser. The Ontario AIDS Network disagrees with a system where only the members of the medical community would inform the patient of their rights as opposed to having an outside adviser or advocate assisting the patient with these rights.
Again, imagine if you would that you're hospitalized for something. Once you are hospitalized, you're vulnerable. Everyone is, no matter what capacity they're hospitalized in, because you're at the mercy of an area of expertise which most lay people simply lack. It's the same analogy if I were to take my car into a garage to have something done to the engine. I know nothing about cars and my trust and faith must lie with that mechanic, his honesty, his integrity and his credibility. I would then not lay all my trust with that mechanic. I would get some outside advice, perhaps go to someone I know who is a mechanic, someone I can trust, someone who may not have a vested interest in the bill that work comes to.
The same thing applies to hospital care and medical care. We strongly urge that the rights adviser remain a part of the Advocacy Act, that people have an opportunity to seek advice on their rights and on proper medical care from an independent person as opposed to just their physician.
I'm going to stop there and pass it to Paul. I welcome your opinion on some of the things I've talked about as well.
1410
Mr Paul Waltenberry: First off, I'd like to take a moment to thank certain members of the Ontario Advocacy Commission who are here today and who work for them, and all the other people who were employed by the commission, for their work since 1992 and the passing of the Advocacy Act.
I'd like to stress that I'm really disappointed that the consultations into the repealing of the Advocacy Act are so small and they're in very distant areas. I had to drive three hours from Kingston to Toronto to appear before this committee.
There are several reasons why I submitted my name to present before this committee, and I'd like to take a few moments to comment on areas that are of grave concern to me and the community groups I represent.
Mark was saying earlier that he's representing people with HIV and AIDS and that community. What I'm doing is I'm speaking on behalf of everybody who is living with a disability, all the cross-disability groups that are represented. In Kingston, we serve a catchment area of approximately 100 miles, which includes eight counties. Five of those counties are rural communities. Many of the people who live in the rural communities are senior citizens and people with disabilities.
In Canada, there are approximately about 70,000 people living with HIV and AIDS, and 41% of that number live in Ontario. That represents a large number in Ontario. The mandate of AIDS service organizations in this province is to advocate and improve the quality of life for people living with HIV and AIDS.
For the past 100 years or more, vulnerable people and individuals from cross-disability groups have faced discrimination and abuse stemming from such things as financial abuse, sexual and emotional, neglect, intimidation and just plainly being pushed aside. In repealing this act, it will put advocacy back years and will allow for the same sort of abuse to continue, with no independent regulation, protection and rights for the various individuals who represent and make up the cross-disability groups of Ontario.
I will not even try to tear apart this act because I'm not a lawyer. It would take a team of lawyers to review this and even then it would be difficult to interpret. As you're looking at the act, and every member has a copy of the act, if you look at one paragraph in the act, it says, "Refer to subsections (4), (5), (6) and (7)," and every subsection you refer to refers you on to other subsections and other subsections and other subsections. So what you're doing is you have one paragraph, and after you read 15 subsections, you see the contradictions all the way through it.
I've shown it to normal, common people in Kingston and we can't make head or tail of it. So for this act to be repealed so fast and the amendments to be made to the other acts is just ludicrous. It's outright abuse of a system of power. It's outright abuse of a government pushing things through and putting the vulnerable people of this province at risk. That's what we're doing.
As Mark was saying, decisions on treatment that are left to traditional family members do not necessarily respect and reflect the best interests of the individual who is needing treatment. Years ago when I first started to advocate on behalf of the various cross-disability groups, the one commonality I found was that the traditional family member, as we'll call it, has been proven to be the main abuser in almost 90% of the cases where senior citizens are concerned. I have a report in my bag that I'll pass out afterwards; the only report I could find in three weeks of researching was done by Stats Canada. It showed that 90% of the cases of abuse happened by family members where seniors were concerned.
It is my recommendation that an independent party, as proposed by the Advocacy Commission, be established as a non-profit agency made up of individuals who represent the various cross-disability groups. In my opinion, I do not believe that putting the consent to treatment back in the hands of the traditional family member and health care officials, and the government's decision to remove someone's access to rights advice, are sound and safe. There needs to be an independent, non-biased party who will make the patient aware of all avenues available to them. We had this party within the Advocacy Commission.
Therefore, my proposal to this committee and this present government is to leave well enough alone, and to reach beyond the scope of dollars and cents and protect the vulnerable of our society.
I have spent the past year working closely with the Advocacy Commission. Before I go on, when I first heard about the commission in early 1995, a regional representative came up to Kingston and contacted the various groups and met with them. I came to Toronto to meet with the commission, because I didn't like the commission. I thought it was a farce. I thought it was a group of individuals wanting to come into our area to take over the jobs we had, to misrepresent people, to set up an office and be another arm of the government. But I was wrong. After a year of the cross-disability groups in Kingston working with the commission -- and they have spent a year coming to Kingston, meeting with the various groups, advising them of their rights, advising them of what the government is supposed to be doing for them, of what health care is supposed to be doing for them. After a year, I've got to the point where I agree with the commission. It's a service that's essential.
Rights advice is exactly what it is -- it's rights. If I'm going into the hospital or Mark's in the hospital, I'm very intimidated by a doctor. For a doctor to tell me what I need is like, as Mark said, putting your car in a garage. Sure, put it in, because I don't know, but if there's somebody else I can go to who's separate but mandated by the government, I'll feel safe.
The commonality between groups and individuals is that finally they have someone who will look after their best interests, and now they live in fear of the Advocacy Act being repealed. I caution this committee and this government that repealing the act will force people to live in isolation, fear, neglect and abuse. Even for this committee to suggest that formal advocacy is meddlesome and dangerous suggests to me that this government refuses to wake up and see first hand the realities faced by our disabled consumers. Furthermore, to suggest that volunteers take care of the vulnerable is a further indication to me that this government refuses to see the truth, and it only reinforces my worst fears.
The very foundation of this province and the social safety net under which we at one time could be assured of being taken care of was founded on the backs of the less fortunate in this province.
I would like to reflect to this committee that regardless of this present government's mandate to abolish and change anything the previous government had done, your battle should not be with the various cross-disability groups and the vulnerable of our society but with the previous government. Allowing for the fact that they no longer are in power, why assault the various cross-disability groups and set this province back 100 years? Your battle is not with the cross-disability groups of this province; your battle is with the previous government.
I have had the displeasure of watching friends and colleagues and patients who are HIV-positive being treated with a total lack of respect, being discriminated against for their sexual orientation and for the simple fact that they're HIV-positive. This brings into concern and only reinforces the position of an independent rights adviser for people.
I have worked in a nursing home where the elderly were neglected, and when they did attempt to speak out, they were put on medication and silenced. I suggest to this committee that you visit an Alzheimer's ward and see first hand the neglect of daily care that goes on. I encourage you to visit hospitals and institutions, both private and government-owned, to see first hand what actually goes on.
This government has not gotten enough consultation into the repealing of this act and has not reached the consumer groups it needs to. When I was first approached about presenting to this committee, I suggested that I bring a whole group of individuals with me. I was told they could submit a written brief and either fax it or mail it in. Well, surprise, some of the people I spoke to had visible cues to their disability; many didn't, but most had a difficult time comprehending this bill, the amendments and revisions of the various acts. Many of the seniors I spoke to in nursing homes could not write because of arthritis or because of lack of eyesight or other illnesses related to getting old. People living with HIV and AIDS were scared of coming forward because that would disclose their status and then they'd be faced with much more to deal with.
1420
This government needs to take back its responsibility and protect the vulnerable of our province. Many of the cases of abuse that happen in this province do not get reported. Why? Because unless there's hard evidence it is difficult to prove. In a report published by StatsCan in 1992 with regard to senior citizens -- and I might add that only stats of violent crimes are recorded -- on page 6 it states that elderly victims were victimized by immediate family members more than others.
I ask this committee to set the stage -- and Mark took it right out of my brief and I didn't know he was going to say it -- for an individual who's gay. They know they're HIV-positive, and they have a family that's really homophobic. They live in a rural community and now they need treatment. Who's going to decide what's in the best interests of that individual? The traditional family member? I think not.
People who are living with a disease such as HIV face more pain and suffering and humiliation and discrimination than you can ever imagine. We who work and advocate on behalf of people living with this disease spend enormous amounts of time and energy to empower people to take control over their own lives, to seek help and live in a society and province with respect and, most importantly, to live with dignity.
In closing, I strongly urge this government to hear what the vulnerable people of this province are saying. I also caution -- and I don't say it in a derogatory sense or as a threat, but in consultations with community groups in southeastern Ontario, whatever the opposition parties are doing, whatever the opposition parties are saying is being closely monitored. People in this province are frightened to death of what this present government's doing. They want a government that's going to stand up and protect them. They want a government that's going to protect the people of this province before the almighty dollar. Thank you.
Mr Bulbrook: Just to reiterate a bit of what Paul just said, it's not a political tactic; it's not generic criticism you would have as a citizen criticizing any party no matter who they are but just because they are the government. It's a sincere comment, and I hope the government of Ontario hears it, that you're scaring the people of Ontario. You are. You're frightening them. I hope you believe me when I tell you that. You're scaring people who live with HIV. You're frightening them. You're taking away housing, you're taking away social programs. You're doing enough to scare the hell out of a lot of people.
I hope you do believe that, when I tell you that. I'm not just being critical, running you down because you happen to be the government of today and last year it might have been the other party. This legislation, this bill, just puts more icing on the cake. The perception out there is that you don't recognize vulnerable people, you don't recognize the need for social programs, you don't recognize the need for things like rights advisers.
I hope you hear that. I'm sure today is not the first time you've heard it, and I don't think it's going to be the last time. Please don't change things because you're low in the polls; change them because that's what people elected you to do. As I see members around the table shaking their heads, I see that my words are not going too far with certain people, but hopefully, if you're not in power, you'll remember these words for the day you are. Thank you.
Mrs Caplan: Thank you very much for your presentation. There are a couple of points I'd like to make. First, I'd like to draw your attention to page 73 of the bill, where the hierarchy of who is called in as a substitute decision-maker includes the capable person's spouse or partner. Every interpretation we have had would suggest that this would permit a same-sex partner to act as a substitute decision-maker within that hierarchy.
My advice is that everyone -- every adult, actually, but certainly the law permits everyone over the age of 16 to write a power of attorney for the purpose of personal care, and I think that's important. The only ones who supersede that hierarchy are guardians. You could have a situation where a family did apply for guardianship and that would supersede the hierarchy number 4. The second is the power of attorney, but the power of attorney does supersede even the guardian if there is a valid power of attorney in place.
I wanted to point that out to you. I did want to make sure you had seen page 73, section 4, and if you hadn't seen it, to know it is there, because I think it does address your concern. A spouse or a partner ranks ahead of family.
Mr Bulbrook: It may say it at some point, but as Paul said, this is a lot of reading and a lot of comprehension. I wasn't sure "partner" necessarily meant same-sex partner.
Mrs Caplan: My understanding is that it would. If there's any indication from the ministry that it does not, I would like them to say so now.
Mr Parker: I refer you to page 74. It's actually subsection (9) that continues the concept. I think that settles the issue.
Mrs Caplan: On page 74 it says, "Two persons are partners for the purpose of this section if they have lived together for at least one year and have a close personal relationship that is of primary importance in both persons' lives." That's the meaning of "partner." I think that's broad enough to cover the concern you've raised.
Mr Bulbrook: I'm not disagreeing that it's broad enough. I'm not sure it's specific enough.
Mrs Caplan: I think it's specific enough to cover --
Mr Bulbrook: Do you?
Mrs Caplan: Yes, I do. You can get other legal advice if you wish, and certainly the ministry would tell you if it wasn't, but I think that was the intention of those two sections together, and I wanted to point that out to you.
Mr Marchese: Thank you for your presentation. Just a few quick things, one mentioned by Mrs Caplan with respect to the fact that people can have a power of attorney and that would solve a lot of the problems. On the other hand, we heard of a case where this particular individual had AIDS and did a power of attorney, but in order to satisfy his parents he went with his parents in the last days of his life, of course with instructions that they notify the partner in terms of how things were going. The problem is they never notified him, and he died, even with the specific instructions he had left.
Part of the concern you're raising is how people with AIDS, gays, are often treated by family members. That's something that doesn't go away and we have to be concerned about that. I wanted to raise the point that even with a power of attorney, at times it still works against some individuals, depending on certain circumstances.
I agree with you that this government needs to take back its responsibility and protect the vulnerable of our province. I think that's true. My view is that governments have an obligation to take care of the people who are vulnerable. They say they care about that. Our view is that if they say, "We care about how we deal with vulnerable people and we care about advocacy," they have an obligation to tell us what they mean, and we don't know. And we should know that now and not after the fact, because after the fact, once this bill is repealed, we won't have a clue.
A number of people have agreed with you that to have simply one person as a member of the Consent and Capacity Board make a judgement on individuals is a problem. Many people, lawyers included, have appeared before this committee and are very concerned about having one individual make that decision. You're not alone in that view.
Mrs Boyd: Thank you very much for your presentation. It is my understanding, both under that section on page 74 and again in the Substitute Decisions Act where they talk about a person having primacy, that a partner, as defined, is someone who's been with someone for a year and is important. That was certainly the description that was there before. I think you could put your mind to rest on that.
But I would think that it would be very appropriate for the Ontario AIDS Network to do some very hard work with all its member groups about the importance of a power of attorney, because someone may not be a partner; they may be a good friend who's the one you can depend on to support you. I think that those power of attorney issues are really important ones and that any advocacy group is going to need to be providing that kind of education for its members, certainly those who are advocating on behalf of people, as you do every day.
1430
Mr Parker: Let me begin just by completing the point that Mrs Caplan was trying to make with you. I think the answer to your concern on the subject of "partner" is to be found in section 18 of the bill. If you just pull together paragraph 18(1)4, subsection 18(3) and subsection 18(9), which is to be found on the other page, I think we've addressed the concern you've raised.
There's a recognition that people can become estranged from their families, for whatever reason, and they are more comfortable with a partner making a decision for them than some relative out there. With that in mind, a partner ranks higher in this scale than any family member, regardless of whether the partner is a spouse or otherwise, and the definition of "partner," as has been pointed out, is drafted to include partners of the same sex.
A person can become estranged from one's partner; we all know that. That matter is addressed also by the option of having a designated power of attorney, and the power of attorney ranks higher than partner. So a person who wants to be specific as to who makes decisions for him has the flexibility and has the authority to make that designation. That's guaranteed under the bill.
In the absence of that, we look first to a partner and then later we look to family members. I think if you read that provision, you'll find that your concern is addressed. I appreciate that it's complex. You think this is complex? Try the Income Tax Act some time, and that affects all of us.
I want to address just one other point that you made late in your presentation, your concern that somehow the government was allowing its focus on the budget to drive its agenda in this legislation. I want to assure you that is not the point with this legislation. This isn't a matter of trying to balance the budget at the expense of advocacy. This is to say that we think this Advocacy Act is the wrong way to go, and we're not alone in that thought. We have received thousands of deputations from people in the form of letters, phone calls, newspaper articles, editorials, columns, you name it, telling us that people out there don't like the existing Advocacy Act. They don't like what it does. The public guardian's office has received over 30,000 telephone calls, over 80,000 letters. So that is what is driving and is the motivation behind this bill -- not balancing the budget, but a desire to respond to the people.
Mr Waltenberry: That's fine, Mr Parker. Who are the letters from? In Kingston, we serve a catchment area of 100 miles. When I worked for the Senior Citizens Council, we had 6,500 members. Last week when I spoke to the executive director of the Senior Citizens Council, the consensus of 80% of the members was that repealing this act is wrong. So I don't know what groups or what people you say wrote in, but I know many of the people in our area never wrote in.
Mr Parker: I recognize it, sir.
Mr Garry J. Guzzo (Ottawa-Rideau): It was too complex.
Mr Waltenberry: It is very complex.
Interjection.
Mr Parker: Garry, come on.
I recognize we will disagree on this point, as to whether we are doing the right thing or the wrong thing --
Mr Waltenberry: Well, why don't you get enough public consultation?
Mr Parker: -- but I don't see any misunderstanding as to why we are doing it.
Mr Waltenberry: That's fine. You can twist it up by putting Mark through and asking us to refer to subsection, section --
The Chair: Excuse me. Mr Parker, your time is up. Gentlemen, the one half-hour is up. I thank you very much for your presentation here this afternoon.
I'd like to welcome John Gerretsen, the distinguished member for Kingston and The Islands.
MARILYN SMITH
The Chair: Our next presentation will be by Marilyn Smith. The floor is yours. You have one half-hour.
Ms Marilyn Smith: I come to you today as an individual, a concerned citizen, and that is largely all the biographical information I'll provide to you.
By way of introduction, much of the information available to the general public with reference to Bill 19, the Advocacy, Consent and Substitute Decisions Statute Law Amendment Act, 1995, including schedule A, the Health Care Consent Act, 1995, premises that current health care consent law is complex; intrusive in the lives of the vulnerably ill and their families; and further, anathema to treatment. Please refer to appendices A and B, which will be forthcoming.
Bill 19 would seem to represent an effort to reduce existing impediments to beneficent and timely intervention while safeguarding the autonomy and wellbeing of those who become ill, as well as those who may be incapable of making decisions necessary to preserve their health and general wellbeing. Notwithstanding, sections of this draft legislation may impede and in some respects negate its intended purpose. Recommendations are provided which may circumvent future instances wherein the rights of people, whether capable or incapable, and wherein the protection of incapable persons from emotional, physical or economic harm, are compromised.
With respect to the Health Care Consent Act, I will address specific areas of concern, immediately followed by a suggestion or potential remedy.
Subsection 2(1), definitions, under "treatment," clause (g): The omission of low-risk treatments from the broader definition of treatment which requires consent represents potential harm to patients. For example, in the anxious hours prior to a surgical procedure, or in the chaotic and emotional event of emergency, patients or their substitute decision-makers may not immediately recall or think to inform a practitioner of an allergy to medication unless prompted when consent is requested. The seemingly low-risk administration of a tranquillizer or painkiller could prove lethal.
Subsection 2(1), definitions, under "treatment," clause (h): Regulations defining things prescribed not constituting treatment could become an exhaustive list, given the variant determinants which may be utilized to categorize low-risk treatments. Health care providers treat multiple numbers of patients, each presenting with multifaceted considerations, in the selection and delivery of appropriate treatment. What may normatively be defined as low-risk may not apply to each patient. As the schedule lengthens, the potential for negative effect on treatment outcome and patient health could well increase. Further, while an intervention may be defined as low-risk, it may be a treatment to which the patient or appropriate substitute decision-maker objects to and would refuse if asked.
My suggestion: To minimize the potential for ill effect on the patient and to safeguard respect for patient wishes, omit subsection 2(1), treatment definitions, clauses (g) and (h).
Section 11, included consent: As drafted, this section may permit occasions where patients are denied the opportunity and right to give an informed consent to treatment. Including consent to variations or adjustments in treatment is to permit the conveyance of a blanket consent to undetermined treatments in undetermined settings. To date, consent, express or implied, has been subject to considerations specific to the treatment, not the uncertain or unforeseen.
My recommendation would be to omit section 11 to reflect the elements and principles of informed consent as they currently exist and as defined in section 10 of the Health Care Consent Act, 1995.
1440
Section 12, plan of treatment: As in section 11, section 12 may give rise to situations where the practitioner proposing a treatment plan inadvertently may not convey significant facets of the plan, subject to the unique concerns of the patient. Blanket consent to any treatment or intervention at any time, in any place, by any practitioner potentiates the circumvention of informed consent. To reiterate concerns related to section 11, valid consent ought to be specific to the treatment.
My recommendation would be the omission of section 12 to again reflect the elements and principles of informed consent as they currently exist and as defined in section 10 of the Health Care Consent Act, or to develop specific requirements which ensure that in the delivery of a treatment plan there is compliance with section 10 of the Health Care Consent Act.
Clause 25(b), emergency treatment despite a substitute decision-maker's refusal, referencing the Health Care Consent Act, section 19: Appreciably, the proposed legislation has been developed to minimize the potential for departure from a patient's capably expressed wishes, whether conveyed by the patient or an authorized substitute decision-maker. Ostensibly, an appointed substitute decision-maker would be far better acquainted with the wishes, values and norms of the patient -- the principles for giving or refusing consent as outlined in section 19 of the Health Care Consent Act -- than an emergency department physician. Ideally, a treating physician should never possess the authority to ignore a legal, capably expressed wish, decision or direction affecting a patient's life; that is, unless the person conveying the instruction is of questionable capacity. Pragmatism suggests there should be a legal means for physicians to treat a patient if a substitute decision-maker's capacity to understand or exercise the authority and dictums of the role is questionable. However, clause (b) provides no guidelines or parameters to physicians in utilizing the prerogative conferred in section 25. The authority is absolute.
My recommendation would be to amend clause 25(b) in order to ensure that in exercising this prerogative, a physician shall only do so when a substitute decision-maker demonstrates an inability to abide by the provisions set forth in section 19.
Subsections 34(1) and 34(3), applications to depart from wishes: The granting of a power of attorney or the possession of a statutory guardianship implies and confers significant assurance and trust that the substitute decision-maker will exercise his or her privilege with adherence and respect for the capably previously expressed wishes of the incapable person. In its current form, section 34 potentiates that this trust may be violated. Subsection 34(3) references the future advance in the likelihood of a positive treatment outcome since the time the incapable person has made his or her wishes known.
If it is apparent that the grantor's expressed wishes were based on medical information that indicated poor or insignificant outcome relating to the proposed treatment, the inclusion of subsection 34(3) is appreciably warranted. However, if the grantor's objections to a specified treatment were related to the treatment or the nature of the treatment itself, such an unchecked inclusion of authority is contrary to the dictums a substitute decision-maker must consider in executing an authority conferred in section 19 of the Health Care Consent Act.
My recommendations would be to amend section 34 to include a requirement that:
(a) An application to depart from wishes may only be made when it is apparent that the grantor's objection to the treatment was based on the anticipated treatment outcome at the time that the wish was expressed; and
(b) There is no reason to believe that the grantor's objection to treatment was premised on factors relating to the nature or method of treatment application or delivery, that is, the treatment itself, regardless of outcome.
With regard to subsection 35(3), application to determine compliance with section 19 -- those are the principles for exercising a power of attorney to consent to treatment -- powers of the board: If, as stated in section 1(e), a purpose of the act is to ensure a significant role for supportive family members when a person lacks the capacity to make a decision about treatment, subsection 35(3) markedly detracts from respect for the capable, previously expressed wishes of the grantor. Further, it does not foster the involvement of capable family members or friends of good faith in the care for an incapable person.
As discussed in the aforementioned section addressing concerns related to subsection 25(b), it is likely that a chosen substitute decision-maker is most familiar with the elements and principles related to consent on the person's behalf. That is, the substitute probably better knows the wishes, values and norms of the patient than would an administrative tribunal composed of persons not acquainted with the patient.
On an application for a determination of compliance with section 19, unless there is a written power of attorney which references the treatment application in dispute or the physician is aware of the patient's wishes and the information differs from the substitute decision-maker's instruction, it is desirable that the Consent and Capacity Board be primarily concerned with the issue of the substitute decision-maker's capacity to understand and exercise his or her duties as a substitute. Should the board determine non-compliance with section 19, it would be preferable that the board appoint a willing alternative substitute decision-maker to act on behalf of the incapable person, rather than impose state-sanctioned, bureaucratic intervention.
My recommendation would be to amend subsection 35(3) to reflect that while the board, in determining non-compliance with section 19, may substitute its opinion for that of the substitute decision-maker,
(a) it shall first attempt to exercise the powers conferred by subsection 31(7) to appoint an alternative representative, subject to:
i) revision of subsection 31(2), which as currently written would prohibit such an appointment; and
ii) any other required revisions to section 35.
Areas of concern with respect to Bill 19, the portion dealing with the amendments to the Substitute Decisions Act, 1992, subsection 6(2), the repeal of paragraph 3 of subsection 10(2) of the Substitute Decisions Act, children as witnesses to power of attorney: The effect of permitting offspring of the grantor to witness power of attorney is to potentiate the grantor may be subject to duress. While many, or most, able to act under the authority of subsection 6(4), subject to subsection 6(2), would do so of good will and with regard to the best interests of their parent, the potential for conflict of interest, or the appearance of conflict, is contained in this section.
In the event that the grantor named an offspring as a power of attorney and the directive included an instruction or wish that ultimately resulted in the person's death, allegations of conspiring effort among siblings for the purpose of financial gain could well result, regardless of how ill-founded in truth the accusation may be. To delete this section in order to prevent an affront to the integrity and moral aptitude of loving children and to prevent unloving offspring opportunity to utilize witness of a power of attorney in order to abuse their parent for the purpose of financial gain would only seem righteous.
My recommendation would be to omit subsection 6(2).
1450
In addressing subsection 6(3), the repeal of subsection 10(3) of the Substitute Decisions Act, duty in the execution by witnesses: The elimination of the requirement that a witness bears no duty to consider the capacity of a grantor of a power of attorney could result in the abuse of an incapable person. On the pretence that it would be in his or her best interests to grant a power of attorney, a trusting person with no close family or friends may sign over all rights of property and person to any individual able to convince the grantor of their care and concern, though no regard for the grantor's wellbeing exists. Embezzlement, bankruptcy of the estate and deterioration of the living conditions of the vulnerable person could easily occur.
My recommendation would be the omission of subsection 6(3).
With regard to section 10, referencing subsection 16(6) of the Substitute Decisions Act, the public guardian and trustee's notification to the person of statutory guardianship of property: The wordage contained in subsection 16(6), "in a manner that the public guardian and trustee considers appropriate," suggests that the form of notification or the method of delivery of notification does not ensure that the affected person will receive notification in a comprehensive and timely fashion. A written notification faxed or sent by general mail to a visually impaired or functionally illiterate person may mean the person, while in physical possession of the document, has no independent means of ascertaining what it means. One may note that fax or general delivery to the person's residence does not ensure that the document will reach its intended destination or come into the possession of the addressee.
My recommendations would be to amend subsection 16(6) to:
(a) establish a time frame for notification; and
(b) permit that regulations be established to:
(1) ensure that special needs are to be considered in the drafting of the form in which notification is given; and
(2) provide guidelines regarding the method in which the notification is served upon the person to facilitate assurance of the receipt and understanding of the notification.
With reference to subsections 14(2) and 14(3), subsection 24(2.1) of the act, the appointment of caregivers as guardians of property: The ramifications of the inclusion of this section are exhaustive in the potential for undesirable effect, including the indefinite perpetuation of illness and reliance on caregivers.
Under the provisions of this section, the owners or operators of boarding-house businesses, which happen to be home for countless numbers of the mentally ill, could come into control of the finances of their tenants, as defined and regulated in the Residents' Rights Act.
Unfortunately, many residents come to believe that they will never be able to live independently. Frequently, they feel so little sense of choice or control over their lives that they seldom consider there would be anyplace else to live. Essentially, they have no concept of themselves as customers who provide a source of livelihood to the owners, operators and employees of these residences.
Many of us would liken this living arrangement to a hostelry transaction wherein if we don't care for the accommodations, we check out and go somewhere cleaner, nicer or with more amenities, such as a swimming pool or sauna. Yet most residents of group homes don't consider that they have the right to take their business elsewhere if they don't like eating supper at 3:30 in the afternoon, don't have toilet paper or soap in their washrooms or don't feel they are treated fairly and with respect. The normal principles and practices of competitive business have little, if any, application in the domain of the group home.
My recommendation would be to omit subsection 14(2) and subsection 14(3), subsection 24(2.1) of the act.
Regarding section 27, a guardian or attorney may receive compensation above the prescribed fee scale: In circumstances where an attorney in the execution of his or her responsibilities of necessity incurs expense, either personally or financially, more than on average incurred by an attorney, it seems fair and wise to include this provision. However, it would seem equally wise to establish or allow for the future establishment of guidelines for accommodating such a request.
My recommendation would be to include in section 27 a provision for regulating the assessment and accommodation of a request for increased compensation.
Regarding section 28, the repeal of section 41 of the Substitute Decisions Act, which has the effect of making the availability of yearly financial statements no longer a requirement: Given that guardians and powers of attorney for property have the effect of giving control of the financial resources of one person to another, possibly unknown, individual or into the trust of an organization, it would seem just and reasonable to require that financial statements be available upon request.
Suggestion: Omit section 28.
By way of summary, I have no formalized, predicted conclusions, but I would like to comment that in reading newspaper articles and information that I've acquired regarding the introduction of this proposed legislation, there have been frequent references to the inordinate authority conferred upon the office of the public guardian and trustee, third parties, to intervene in the provision of treatment, essentially unwanted intervention in the personal life of an individual who is either suffering illness, has become incapable due to illness, or their caring family members and their caring family practitioners.
Unfortunately, this legislation still permits, and in some instances has broadened, the instances wherein a third or fourth party may intervene into the life of a vulnerable person or their family members who may wish to act on behalf of their vulnerable family member. The public guardian and trustee remains the guardian of last resort, as is the situation under the existing law, the Substitute Decisions Act. Powers of the board are such that it may substitute its own decision for that of substitute decision-makers of equal rank when they are unable to come to an agreement as to the treatment that should be pursued or not pursued.
The availability of applications to depart from wishes without very stringent requirements and guidelines which dictate or guide the outcome of such a proceeding, and the introduction of care providers as potential guardians even prior to the appointment of the public guardian and trustee, is, in my opinion, possibly one of the most dangerous introductions that has been made: to introduce persons who may act on behalf of incapable people other than the state or employees of the state.
1500
Notably what is lacking from the proposed legislation is provisions for rights advice and/or advocacy services, and I see this as a fundamental requirement. Pragmatically, the provision of rights advice and advocacy services would have the effect of safeguarding the province against any litigation which may ensue if an individual was not informed of legal rights they possessed and ought to have been able to act on, but were not made aware of. For instance, in the current draft, when a family practitioner decides an individual is incapable with consent to treatment, there's no notification requirement. The only requirement of notification within this document of which I'm aware is that the assessor of capacity in making a determination of incapacity shall inform the individual of the finding. I may be reading wrong. They have the rights upon approaching the individual to instruct the person what they are there for, the potential outcome of a finding of capacity or incapacity, the right to refuse the assessment.
Further, one area to address is that I do find codifying the allowance for the provision of shock treatment for the purposes of aversive conditions to be distasteful. I would not want to be subject to shock or strapping or hitting if I was engaging in behaviour which someone else found offensive, but may be a source of comfort to the individual engaging in that act. But in that area, given that is a provision being platformed in this legislation, it would certainly seem prudent and wise and in the best interests of all concerned -- the ill, the incapable, family members, care providers, whether formal or informal and government itself -- to institute some provisions for advocacy and rights advice services.
The Chair: You are at the end of your time, Ms Smith, so there will be no time for questions. I thank you very much for taking the trouble to appear before us.
ALLIANCE FOR LIFE ONTARIO
The Chair: Our next submission slated is the Alliance for Life Ontario. For the purpose of Hansard, could you identify yourselves and then proceed.
Ms Jakki Jeffs: My name is Jakki Jeffs. I'm the executive director of Alliance for Life Ontario. With me is our legal adviser, Mr Geoff Cauchi.
We thank you for the opportunity to present before you today. We are the provincial coordinating body for 74 educational pro-life groups across the province and approximately 50,000 members within that group. We seek to promote, through education, respect for human life at all stages of development, from conception to natural death.
As I said, Mr Cauchi is joining me today. He is a lawyer by profession and our volunteer legal counsel. He's also current vice-president and director of education for St Catharines Right to Life Association. Mr Cauchi has given many presentations to our groups across the province concerning the existing legislation over the last year. He's also helped us develop a Judaeo-Christian, Pro-Life Power of Attorney for Personal Care/Advance Directive, which we have distributed to individual members of our local groups and made extensively available across the province at a nominal cost.
For your interest, we have included at the back of our brief in a white envelope a copy of this form, which we presume will soon become a collector's item once your work on Bill 19 is done, and whether it's passed with or without amendments. Be assured though that a second edition will be forthcoming from our association. It's complete with its extensive notes and it explains the beneficial options in the legislation to be embraced and the pitfalls to be avoided.
During the presentation given to you by our colleagues at Campaign Life Coalition, they recommended a public education campaign to ensure that people are aware of the dangers inherent in the typical living will type advance directives currently available on the market. This form was our contribution to public education on this issue.
I will be happy to help with the questions later on, but at this point I would like to turn our presentation over to Mr Cauchi.
Mr Geoff Cauchi: In addition to a written presentation from which today's presentation is drawn and our form of power of attorney, we have distributed to you a detailed legal analysis of Bill 19 in the areas of interest to our organization. This analysis contains over 20 specific recommendations, together with specific drafting instructions for the recommended amendments. The written presentation contains both an executive summary at the front and extensive end notes.
We want to direct most of your attention today to only a few of our issues, not because the others are any less important but because our colleagues at Campaign Life Coalition, REAL Women and Toronto Right to Life have addressed the others adequately, and our allotted time is of course limited.
The more I look at the current legislation and the more I talk to people who have been affected by it, the more I see its "one size fits all" approach as a fundamental weakness, not a strength. This weakness remains in Bill 19.
There are important public policy, legal and constitutional reasons why a presumption of capacity is appropriate for the adult population, but not appropriate for dependent children, why some forms of treatment require a higher standard of informed consent than others, and why some classes of health practitioners should not be given a broad, unreviewable authority to make judgements of capacity and administer the consent process. The failure of the legislation and its replacement, Bill 19, to make some very important distinctions puts children and vulnerable adults at risk of injury at their own hands or through exploitation by unscrupulous health practitioners.
The CTA and the HCCA embrace the radical notion that health practitioners in the abortion and family planning industries should have free access to other people's dependent children without their parents' knowledge or consent. It just so happens that it is this sector of the health services field with which we are most familiar and about which we can speak with authority.
It will become quickly obvious to you that, at least for today, we have placed our analysis of Bill 19 largely in the context of the provision of abortions and chemical contraceptives and abortifacients to minors. If time permits, we are prepared to answer questions from you on our recommendations in other areas of concern. I want to specifically invite you to ask us about our solution to the Lonnie Clements type of situation. I think we have something for you there.
Public schools in Ontario routinely, through staff nurses or public health nurses invited into the schools, refer young girls to the local birth control clinics operated by the county or region or Planned Parenthood. They tell the girls that the clinics will provide them with free contraceptives, or arrange an abortion for them if they get pregnant, and that their parents don't have to find out. They're told that the decision is entirely up to them and that they should tune out their parents' voices if they don't have an open attitude towards their sexual activity. The Ontario Association of Sexual Health Professionals actually boasts that they have been following a policy of secrecy since 1971.
At a time when a teenager is naturally trying to seek out his or her own identity, these kinds of messages are the ultimate weapon a salesperson can use to convince a teenager to do something their parents don't approve of. It's the kind of seduction that's as old as the serpent in the Garden of Eden, the kind that gives teens permission to go against the belief system of their family.
1510
Various sections of the HCCA, including the presumption of capacity for persons of all ages in section 3, and the right to rely on it, as well as the protection from liability clauses in sections 26 and 27, will combine to give a statutory blessing to the current practices of so-called sexual health professionals, and something akin to diplomatic immunity from liability for injuries that are inherent side-effects of their products and services.
We believe that section 3 has less to do with respect for a child's autonomy and confidentiality than with assuring the abortion and family planning industries unimpeded access to new markets for their products, services and ideologies; that is, other people's children. The duty of confidentiality is a creature of the common law, and under the common law it has never meant that parents should be excluded from decisions relating to treatment for their dependent children.
The standards for informed consent under section 10 of the HCCA assume an adult level of reasoning. Research demonstrates that it is extremely rare to find children and adolescents functioning at an adult level of reasoning. The contrary view that children are generally just as capable as adults with respect to complex medical decisions is a 1960s myth that has failed the test of science and human experience. A legal presumption that is based on the exception rather than the norm is apt to do more harm than good, and as Mr Justice Cory of the Supreme Court of Canada said, "It has always been recognized in western cultures that children under the age of 16 require guidance and direction from parents and older persons."
Legal abortion and the birth control pill continue to be complex treatments with serious potential side-effects. The vast majority of adolescents are incapable with respect to these treatments because of their innate immaturity. Furthermore, the very fact that they are engaging in activity associated with these treatments may demonstrate incapacity. Gary Ingersoll of the University of Indiana says that if children are involved in sexual activity before age 16 they may have a "risk-taking profile" that parents need to address with professional help. We foresee that the HCCA will actually facilitate the treatment of many children on the basis of a self-consent that is not valid.
The majority of developmental theorists who accept the notion of developmental stages in the physical, emotional and cognitive development of children also support a role for parents in the healthy development of their child and the exclusion of the child from fully exercising his or her choices.
It may sound trite but it is true, hard cases make bad law. Dr Goldblum of the Toronto Hospital for Sick Children presented to you the case of the teen who was suffering from an STD but who could not overcome the fear of his parents discovering his condition in order to obtain treatment. This is a hard case. However, the statist notion that governmental power should supersede parental authority in all cases because some parents abuse and neglect children, or some children might avoid treatment for fear of discovery by the parents, is a concept repugnant to our culture.
Dr Goldblum told you that the majority of teens want their parents involved in medical treatment decisions, and that it is rare that parents are inadequate substitute decision-makers. What reasonable parent in this world wouldn't want treatment for their child upon discovering that he suffers from an STD? And even if you could find such a parent, that's the time for the health practitioner to make a call to the children's aid society, not take the law into his own hands.
We find Dr Goldblum's expression of support for the presumption of capacity at all ages, which will result in parents being exclude from treatment decisions for their children, completely out of whack with his own observations. But this kind of thinking is nothing new among promoters of liberal welfare state social policies. In 1987, the National Research Council in the US published a report called Risking the Future: Adolescent Sexuality, Pregnancy and Childbearing. The council specifically found a correlation between increased rates of sexual activity and provision of family planning products and services to adolescents, and even acknowledged that this may be a causal relationship. Notwithstanding this finding, the report continued to advocate higher government spending for contraceptive services for teens at low or no cost, unrestricted abortion and contraceptives for teens without parental consent, condom distribution programs and school-based clinics.
Now, I say that when people propose a radical change to a centuries-old understanding of the proper relationship between children's rights, parents' rights and state power in response to an identified problem, we must challenge them to conclusively demonstrate that the side-effects will not be worse than the problem identified.
Dr Goldblum's suggestion that the section 3 presumption will help him to treat the teen with an STD is merely speculative. But even if we accept it for the moment, what good will it do him and our society if, for every such teen helped, he will have to treat an additional roomful of teens with STDs because the policy of secrecy has encouraged a whole new group of teens to rebel against their parents' rules and experiment with risky sexual activity? The response you often get to this objection is simply, "Well, we don't intend to encourage promiscuity," as if good intentions were enough to prevent it from happening.
What has been the effect of laws that require parental notification and/or consent with respect to medical treatment? Let's look at abortion and unmarried teen pregnancy statistics in those jurisdictions where this question has been examined. When Utah passed a law requiring parental consent for minors to be given contraceptives, not only did teenagers' use of family planning clinics and teenage abortions decline, so did pregnancy and birth rates. From 1980 until 1985, when the law was struck down, Minnesota had a law which required parental permission for a minor's abortion. During the five years in operation, there was a 21% decline in the rate of abortions, a 15% decline in the rate of pregnancy and a 9% decline in the rate of births among girls aged 15 to 17. There was a 23% decline in the number of abortions and a 15% decline in pregnancies in the second year after a similar law was implemented in Massachusetts.
Secret birth control pills and abortions for minors are not the answer to the unmarried teen pregnancy problem.
We've included in our written presentation a quote from Professor Kingsley Davis, the prominent population control proponent from the organization Zero Population Growth, hardly a pro-life source. In that extract, he blames intrusion by the state and its agents into the affairs of families for the problem, not the lack of access by teens to secret pills and abortions.
Elsewhere he has written: "The current belief that illegitimacy will be reduced if teenaged girls are given an effective contraceptive is an extension of the same reasoning that created the problem in the first place. It reflects an unwillingness to face problems of social control and social discipline, while trusting some technological device to extricate society from its difficulties. The irony is that the illegitimacy rise occurred precisely while contraceptive use was becoming more, rather than less, widespread and respectable."
This conclusion finds support in the work of an economist by the name of Jacqueline Kasun. She found that in every state in the US tested, increased government spending on programs that distribute family planning services to teens is correlated with increased levels of unwed teen pregnancy.
Bringing the matter back to Ontario, I suggest you review the findings of the city of Toronto public health department released in April, 1993, under the title Sexual Health Data Report. The report found that the overall pregnancy rate per 1,000 females aged 15 to 19 rose by 17% over the last 15 years. Furthermore, gonorrhea and chlamydia rates among males and females aged 15 to 19 showed significant increases in 1991 and 1992. No one could argue that there is any other community in Canada that gives teens more unrestricted access to contraceptives and abortions than Toronto.
We believe that the legislation can be and must be crafted to accommodate the treatment needs of the hard cases without abrogating the fundamental right of parents to regulate the sexual behaviour of their children as best they can.
I've spent the last 10 minutes trying to convince you why Bill 19's total rejection of parental rights is bad public policy, but the most compelling reason why the Legislature will have to make substantial changes is a legal one. The case of the Supreme Court of Canada in R(B) v Children's Aid Society et al has already been mentioned. The court in that case categorically rejected the notion that parental wishes with respect to treatment for their children can be arbitrarily dismissed as soon as the health practitioner decides that the treatment is necessary.
1520
The HCCA cannot possibly withstand a Charter of Rights challenge because it arbitrarily, without notice, takes away parents' rights and delegates them to the child and his or her health practitioner. It does so whether a treatment is medically necessary or a mere lifestyle choice, as in the case of abortion and chemical contraceptives. Such interference in the child-parent relationship must be proven to be justified to a judge or judges before the treatment is administered. The HCCA essentially gives to individual health practitioners, including the school's 22-year-old staff nurse, more power to interfere in your relationship with your child than the local children's aid society.
A CAS can't act until it has proven to a court that a parent has refused consent to treatment that is medically necessary. The Supreme Court said that parental decision-making must receive the protection of the charter in order for state interference to be properly monitored by the courts and be permitted only when it conforms to the values underlying the charter. These values include respect for the family as an autonomous decision-making unit.
Five of the nine judges of the Supreme Court hearing the R(B) case, that is, a majority, held that the right of parents to rear their children according to their religious beliefs, including that of choosing medical and other treatments, is a fundamental aspect of freedom of religion guaranteed by section 2(a) of the charter. If a statute or other state action infringes upon that freedom, the state has the burden of proving to the court that the infringement is justified under section 1 of the charter.
Four of the judges also concluded that the liberty protected by section 7 also includes the right of a parent to nurture his child, to care for its development and to make decisions for it in fundamental matters such as medical care.
On the subject of just how broad section 7 is, Mr Justice La Forest, one of the four, criticized the contrary opinion of the dissenting judges in the following terms, and this is very key; I don't think you've heard this part of the judgement before:
"Some of their remarks may be understood as supporting a parent's rights being overturned simply because a professional thinks it is necessary to do so. I would be very much concerned if a medical professional were able to override the parent's views without demonstrating that necessity....
"Here, what is attempted," that is, the contrary approach, "is to limit a right by another, with no stated mechanism for judicially determining just when, on the facts, the first right is overridden." This is very important, this part coming up. "To get a fuller appreciation of what this means in the present context, one need simply postulate that the act impugned here, with all its inbuilt protection for parental rights, did not exist, and was substituted by an act that made no provision even for notifying parents when some state agent decided a certain treatment was necessary for a child."
One can only speculate if Mr Justice La Forest had in mind the Consent to Treatment Act when he spoke of a hypothetical statute, but each, meaning the Consent to Treatment Act and the HCCA, does exactly what he said could not be justified under the charter. In our view, as they are currently written, neither the CTA nor Bill 19 could survive a charter challenge by a parent.
The next objection: The HCCA treats all treatments above a de minimis level the same. But in reality, not all treatments are the same. Some require a higher standard of care from health practitioners in administering the informed consent process than others. Recreational or lifestyle treatments, which are proposed for socioeconomic reasons and not for the treatment of a disease or an injury, but which carry a high risk of injury, require special consideration. Abortion and the birth control pill fall in this category. Subsection 5(4) of the Consent to Treatment Act should be re-enacted in the HCCA to give the government the power to impose higher standards where abuse of the informed consent process is identified.
The assumption implicit in section 9 of the HCCA, that all health practitioners are able to make reliable judgements of a child's capacity to make his or her own treatment decisions, is not realistic. In 1992, the Ontario Association of Children's Aid Societies told this committee:
"Many of the health care practitioners who will be required to make such judgements have neither the training nor the knowledge of child development such that their judgements could be considered informed. Many encounters with health care practitioners about individual treatments are very brief and are not conducive to the health care practitioner developing a knowledge of the individual child before them, such that their judgement could be considered informed."
We wholeheartedly agree.
Finally, it would be incredibly naïve to expect health practitioners, who have an institutional, economic and ideological bias in favour of the treatments they are selling to children, to make objective judgements of capacity. Health practitioners in the family planning industry are notoriously biased in their approach to supplying abortions and chemical contraceptives and abortifacients to minors. They readily use their positions as platforms for social engineering. Their commitment to an ideology is so strong that regulatory control over their compliance with section 9 is not sufficient.
The clandestine relationship between sexual health practitioners and their child clients is marked by conflict of interest and unequal bargaining power. Expecting such health practitioners to comply with the HCCA is like expecting a Chevrolet salesman who is trying to sell you a Lumina to outline all the best features of a Ford Taurus. It just isn't going to happen.
Our recommendation, therefore, is that health practitioners not be permitted to make judgements of capacity of unmarried children who are under the age of 18 and living under the care and control of their parents.
I think we'll stop there and invite questions. As I said, we have a list of recommendations. That's summarized in the executive summary beginning at page 4, and so we invite questions about that or any other matter.
Mr Marchese: I thank the presenters for their submission. I'm not sure that my colleague has any questions.
Mrs Boyd: No.
Mrs Johns: I just wanted to talk to you about the R(B) case that you talked about in there. It's my understanding, and I'm not a lawyer so I know you'll be able to correct me on this, that the child they were talking about in that particular case was an infant and the parents had the right to be able to make decisions for an infant because the infant was obviously incapable of making those decisions. That case wouldn't necessarily proceed through to be the same precedent, I suppose would be the right word in legal terms, for someone who was deemed to be capable and could understand the procedure and what the outcomes would be of that procedure. Is that correct?
Mr Cauchi: No, I don't think that's the reading of the case. I think you should perhaps get the staff to analyse the Child and Family Services Act, as well as that decision, very carefully. It's in general terms: Parents have the rights. You have to have some kind of mechanism, maybe not exactly the same mechanism as in the Child and Family Services Act, but you must have some mechanism whereby parental concerns can be addressed. There must be fairness in the procedure.
It's remarkable, the Child and Family Services Act, section 105 -- and this deals with people who have had their children taken away from them, they've been accused of sexual abuse. It says right in there that they retain the rights to make medical care decisions for their children, whatever rights they had, even though their kids may be taken away from them. So how could you give them those rights, respect those people's rights, and deny them to people who are ordinary citizens who have not been accused of any kind of wrongdoing in respect of their children?
I am a member of the board of directors of my local children's aid society and I am proud to work under that statute. It is a wonderful statute because it balances parental rights and children's rights and the state's rights very delicately and very well. I'm just flabbergasted that this statute completely ignores those principles. As I said, I'm very proud and I respect the procedure that is in that statute, and I think you should really give it hard consideration, because this statute, sooner or later, if it's passed this way, is going to be challenged very easily. If you think that people in the past have been abandoning the public education system, once they have an idea that their daughter could be sent to an abortion clinic during the school day, they're going to avoid those schools in droves.
The Chair: Your time is up, and I thank you very much for making your presentation here today.
Mrs Johns, I think you meant to say it was obiter dicta and I think we confirmed that that statement was obiter dicta. Ms Swift will have the case for us in the event anyone wishes to review it.
1530
ONTARIO ASSOCIATION FOR COMMUNITY LIVING
The Chair: The Ontario Association for Community Living, Nancy Stone, president, and Audrey Cole.
Ms Nancy Stone: I'm Nancy Stone, president of the Ontario Association for Community Living. I am a parent of a young man who has an intellectual disability. I'd like to introduce Audrey Cole, who is a board member of OACL and also a parent of an intellectually disabled young man. Audrey is also our resident expert on this subject and has worked since 1988 on the issue and is certainly very capable of presenting and has been instrumental in the brief that you have before you. I'm going to turn it over to Audrey, after also introducing Barbara Thornber, who is our executive director at OACL.
Ms Audrey Cole: You will see that our brief generally covers five areas: why guardianship discriminates against people with intellectual disabilities; it talks about a different way of thinking, a different legal paradigm, that would make the necessary accommodation to that disadvantage; it also talks specifically about how Bill 19 puts people with intellectual disabilities in even greater jeopardy of losing their fundamental right to self-determination than is presently the case; it addresses specific concerns in Bill 19, including the repeal of the Advocacy Act, which we believe is unconscionable, the Health Care Consent Act and significant amendments to the Substitute Decisions Act. There's a separate document which includes the particular recommendations and suggestions that OACL has to make, which is literally pulled out of the main document. All of them relate in some way to the issues of rights, of accountability and of the other safeguards which will be removed by Bill 19.
As to why guardianship disadvantages people with intellectual disabilities, any legislation ever that's based on a cognitive definition of capacity is bound to disadvantage people with intellectual disabilities. It's a disadvantage that's not faced by any other adults on reaching the age of majority. In that context, we believe that it's discriminatory.
The particular effect on people with intellectual disabilities of labels like "incapacity" and "incompetent" can become self-fulfilling in reality. The damage to self-respect and social image can be very crucial in how people treat people -- "treat" in the broad sense -- with intellectual disabilities. There's no evidence of benefit under guardianship to compensate for the diminished human value and status that it represents as far as people with intellectual disabilities are concerned. It doesn't make you less vulnerable.
The main benefit of guardianship is to third-party interests, and it's quite clear that those are the interests that are driving this bill. The government is ignoring its obligation to accommodate in the legislation for that disadvantage faced by people with intellectual disabilities. There is an obligation on government to build legal ramps to guarantee access by people with intellectual disabilities to their fundamental right to self-determination. Bill 19 not only takes them away but, by doing so, it increases the threat and the jeopardy in which it puts those particular people.
What's needed is a different legal paradigm that recognizes the natural way that human beings make decisions: We do it with the help and support of the people who are around us. The fact that we do it and we enjoy that privilege doesn't change our status; it doesn't say we're incapable. But people with intellectual disabilities are subject in society to having their capacity questioned anyway, and so it has a different effect on such people than it does on the majority of people.
The law has to correct the misconception that capacity lies within the individual, ie, that it's a cognitive kind of thing, and acknowledge that capacity depends on the support we have around us and the environment in which we have to function. The law has to recognize ultimately, in order not to be discriminatory, that as adults we make decisions interdependently, not independently. The Substitute Decisions Act didn't accommodate, and Bill 19 doesn't accommodate either.
Guardianship's an instrument of control. People with intellectual disabilities don't need control. Our whole movement is about how they're emerging from centuries of control, neglect and abuse, caused in turn by fear, by hatred, by ignorance, apathy or disinterest. It's our purpose in our association, our movement, to support them in taking their place as citizens who have an equal right to be there, an equal right to participate and an equal right to contribute. They feel very threatened by laws that make guardianship easier. They don't need control; they need support. They need support and respect, and accommodation to lessen the disadvantage that they face in society.
We're going to deal with some specifics in the bill which cause us a great deal of concern and are picked out from the ones that are in the separate document and in the main bill. All of them deal with the taking away of rights that the bill represents, the reducing of accountability that the bill represents, all things which are going to have a particular effect on people with intellectual disabilities.
Ms Stone: I'm going to speak to the section of our brief on page 12, electric shock for purposes of aversive conditioning.
We all have fundamental rights. Section 12 of the Canadian Charter of Rights and Freedoms states that everyone has the right not to be subjected to any cruel or unusual treatment or punishment. Subsection 43(5) of Bill 19 in fact would provide the legal authority for an action that, without that amendment, would be a violation of the Criminal Code. This committee must be fully aware of the seriousness of this amendment. By making shock a treatment under this amendment, there is nothing to stop its being recommended under the Health Care Consent Act, where any family member could approve, without any court approval or independent review, and that could result in a person being subjected to a lifetime of shock treatment under the guise of aversive treatment.
1540
The total absence of any safeguards against its use in this legislation is totally unacceptable. Security of the person under section 7 of the charter includes the freedom from your own self-inflicted injurious acts as well as the injurious acts inflicted by other people. You cannot choose either/or between these two acts but must choose alternatives to the injurious behaviour.
OACL believes very strongly that, at the very least, Bill 19 must be amended so that the authorization of the use of electric shock as aversive conditioning will require a hearing either by the court or by the Consent and Capacity Board. This practice is so controversial, not happening anywhere else in Canada, and, in OACL's view, so dehumanizing that no one should ever have the authority on their own to provide a valid consent to its use. Thank you.
Ms Cole: In addition to that, there are a number of other issues that we also see as infringing on people's rights and providing less accountability than is present in the current act. All of our concerns here don't make us any happier about guardianship as a concept, but we are conscious of the fact that opportunity wasn't taken this time to make those accommodations so we will be left with the same kind of traditional guardianship legislation that will continue to disadvantage people with intellectual disabilities.
We have great concerns about some of the changes and removal of some of the accountability with respect to powers of attorney. The fact that more immediate family members can be witnesses, the fact that witnesses now will only have to attest to the fact that a particular person signed it means that what could happen would be that you can have a situation, and this is not unknown, where immediate family members could actually conspire to draw up a power of attorney, persuade the so-called grantor to sign it, provide the necessary witnesses, all irrespective of the capacity of the grantor to sign it in the first place. That causes us great concern. It's a tool for manipulation without the safeguards that were there before.
We have great concerns in the Health Care Consent Act about the sort of extended consent concept with respect to plans of treatment. Two major concerns: The more items of treatment that get added into a long plan of treatment, the harder it will be for a person with intellectual disabilities to keep in mind what has been consented to. The longer that plan is, the more individual components it has, the harder it's going to be for people.
You can imagine too with a person with an intellectual disability the difficulty that some practitioners already have in finding out how to communicate with people with intellectual disability becomes even worse when you're going to have a long plan of treatment. What we're saying is that no treatments anywhere in that line should be done without actual consent. In other words, for someone who perhaps isn't able to manage the idea, and very few of us will be, by the way, the long plan of treatment, then it should be obligatory on a practitioner to get consent at every step of the way. Surely that should be there for all of us. We need that safeguard.
The other thing in plans of treatment that is very frightening for us is the issue of "do not resuscitate" perhaps being the last item on a plan of treatment. We've included in the brief -- I forgot to note the pages -- some quotations, some references to the inquests, the Christopher Robin inquest particularly, which is relevant here, a quotation from the Stephen Dawson case in BC in 1982, all of which are relevant because of the fact that many, many people do not place the same human value on people with intellectual disabilities as they would on themselves and other things interfere with the kinds of decisions that would end up with a DNR.
Already there are parents who believe that they ought to have authority to say, when a person enters any kind of group home or other place than the personal home, that they should be able to give advance consent that should there be an emergency, the son or daughter would not be resuscitated. Surely that's one of those things in life that no one in advance should be able to give for anyone except themselves. It's unacceptable that those kinds of decisions might appear in a long-term plan. They really should ever only be addressed at the time that it becomes an issue. We would like you to consider that.
Now, those aren't the only ones, but in view of time, those are the only ones we're talking about here.
The other thing that is of particular concern to us, of course, is the repeal of the Advocacy Act. The whole 10 years that people with disabilities and their representatives worked to try and get a mandated system of advocacy was simply because it's so difficult to have effective advocacy when abuse and neglect and those kinds of things are taking place unless you have authority to get in the place and do something about it, and by repealing that act, that authority will disappear. Anything that's going to replace it, if it's to have the same effectiveness, will have to have exactly the same requirements, so it doesn't make sense to us that it was repealed. As a matter of fact, we just consider it unbelievable.
There also seems to be some confusion raised in Hansard about people not understanding what advocacy is, particularly I might say on the government side, so we've helped you perhaps in the brief to understand a little bit about what advocacy really means.
Ever since there have been people and systems that have assumed power and control over other people, there's been advocacy. There have been victims in those and there's been need for advocacy. Advocacy's about enabling people to reach out for their own dreams and a little warmth and respect in their lives. It's about caring and about the kind of society that we want to live in. It's about bringing some heart into a callous, crass, materialistic world. It's about human dignity.
There's probably never been a time in Ontario when there's been more need for advocacy for vulnerable people than there is today, for all sorts of reasons. To repeal the act is unconscionable, but it won't stop advocacy. It won't go away, because advocacy's about truth and justice and humanity.
I think that because of the time, that's as far as we can go in an oral presentation. We've tried to express all of our concerns in our brief. We would entertain any questions.
Mr Ron Johnson: We had a presentation from the Brantford and District Association for Community Living and we had a presentation from a parents' group that's a part of that association. I have two questions. The first one is, do you find that most associations have parents' groups involved with them?
Ms Cole: I didn't catch the names of those associations. These are associations for community living?
Mr Ron Johnson: Yes, at the local level. Many of them, from my understanding -- I know the one in Brantford does -- have a parents' group that does work on behalf of all the residents. I'm asking, the associations within your organization, do most of them, to the best of your knowledge, have parents' groups associated with them?
Ms Cole: Additional to those that are already part of the association?
Mr Ron Johnson: Yes.
Ms Cole: Some may do.
Mr Ron Johnson: I guess what I'm getting at is, we're finding through a number of submissions that there is a large number, whether it be parents' groups or advocacy groups that are in communities now.
Ms Cole: Yes.
Mr Ron Johnson: Of course, the coordination doesn't seem to be there among them all, but there are a number of advocacy groups within communities across the province. Our goal of course, since we do support advocacy, really is to enhance that and to encourage that. I know you are opposed to the repealing of the Advocacy Commission and the Advocacy Act, but are you --
Ms Cole: I didn't mention the commission, I mentioned the act.
Mr Ron Johnson: No, the act; I understand that. When the act goes, so does the commission. What we're talking about is tapping into a lot of the resources that are already available, and I want you to give me your opinion on what our role as government should be, keeping in mind the goals that we have.
1550
Ms Cole: Thank you for the question. Your role as government, it would seem to us, would be to fulfil your obligation to ensure that there is sufficient legislation to enable advocacy to take place in an effective manner. If you look back in our history to the situations in which we've known of abuse in homes for special care, in unlicensed boarding-homes, all over the place, there is no access. People in the sort of organization you're talking about can't get in. There's no right of access. That's the whole purpose of the Advocacy Act, to give the authority for advocacy to take place in a way that would get people out of those situations.
The simple question is, that's an obligation. It's an obligation that only government can meet and it's absolutely essential that whatever takes place after now has that authority.
Mrs Caplan: Thank you very much for an excellent brief. I'd like to address your recommendation that disputes between equally entitled surrogates be referred to the Consent and Capacity Board when they can't agree. I think that's an important one because right now, the way it stands, if children or parents and children who are lumped together in one don't agree, then the public guardian and trustee steps in, and I think that an intermediary step might be a helpful one. Do you support having the Consent and Capacity Board's decision -- this is on page 3 at the top -- being final, or should they act as a mediator where they can't --
Ms Cole: I think what we were concerned about here is that there's a very clear public role for the public guardian and trustee as the last resort decision-maker and the mandatory investigator and so on of situations that can't be dealt with otherwise. Since some of those things would go to the Consent and Capacity Board, others would go to the public guardian and trustee, surely to avoid conflict of interest for the public guardian and trustee it would make more sense for all of those situations to go to the Consent and Capacity Board.
Mrs Caplan: It's my view that if they also took parents and children out of the same category in the hierarchy, you'd have less chance for conflict, although if there is an equal number of children, you're going to get disputes. I think it's an interesting point that you make.
The other one I wanted to ask you about, I think that you've raised an issue of training which is important. Evaluators and capacity assessors are two very different species, and there is no requirement for the training of evaluators.
Ms Cole: That's our concern. There is no training for evaluators, so what comes into the evaluation process is everybody's values and historical baggage, which probably has nothing to do with anything but always affects decisions unless you can have some kind of standardized process. That's why we suggested the capacity assessment offices, simply because they've done a superb job in focusing on the real issues so that the extra stuff stays out of those decisions.
Mrs Caplan: Would you agree that in fact evaluators would not need the same kind of comprehensive training as a capacity assessor for the purpose of guardianship --
Ms Cole: No, we're not suggesting they need the same training. We're saying that's a probable place because they've already worked through how you separate what you have to really evaluate from all of that extraneous stuff that tends to mixed up in it.
Mrs Caplan: I think that's a really good point. The last one that I draw your attention to is the fact that you'd rather have the public guardian and trustee than a caregiver. It would seem to me that the real concern there would not be someone who was employed on a straight salary but a caregiver who would benefit by ordering things in a fee-for-service relationship. Would you have an objection or would you amend this to say that where the caregiver was in a fee-for-service relationship or where they would materially benefit by being the substitute decision-maker or the guardian?
Ms Cole: Well, the context was service providers. That was the context of that, was it not?
Mrs Caplan: But the context of service provider doesn't necessarily mean fee for service. For example, you could have a nurse who is caring for the patient, she's on salary, she has nothing to gain by looking after this. Her natural tendency as an advocate on behalf of her patient might make her a very appropriate person. I think that's perhaps what the government was contemplating, but I would not want to see anyone who was in a conflict-of-interest situation --
Ms Cole: And that was the issue we're trying to get at, was the conflict of interest.
Mrs Caplan: So would you agree with that as the conflict, where you would benefit by the care you would provide?
Ms Cole: Yes. We have to bear in mind that you could have the bizarre situation whereby a service provider not only is, professionally and with remuneration, responsible for the care of the person, is part of the system probably that's done the evaluation to enable the person to be in the place in the first place -- not only do they have control of the assets that are needed to care for the person -- whatever cost it is, they have control of that -- but now we have the additional bizarre idea, by adding possibly under regulations that you can get paid for personal care decisions, that the same person could be paid to be that guardian. If that isn't conflict of interest on top of conflict of interest, I don't know what it is.
Mrs Caplan: I think that has got to be clarified.
Mrs Boyd: Thank you very much for the very lucid description of changes that you would see made. I think you certainly have very eloquently presented the case in terms of the need for advocacy in many of these areas, and as you know, we certainly agree with you. While we would agree that there may be other ways of doing it, the need for advocacy and the need for government support of advocacy, the right of entry and the right of access to records is minimal in order to really do the job. All we have to do is look at the number of cases in which an inquest is the only way in which someone's situation -- the Kendall or the Christopher Robin home inquests -- and knowing the detail of those is enough to make one's blood run cold.
I'm very pleased to see that you recognize the real difficulty we face when the government wants to take aversive therapy away or allow it completely, a compromise suggested that there at least be a hearing by a court or a capacity review board. I think, given their determination, that may be the only kind of protection that's there. But I would agree with you it's minimal and definitely at the very least.
Certainly we work together in terms of that whole issue and I think the conflicting vision that's been presented to us -- we get one psychologist saying, "Oh, it will only ever be used for one person," and another saying, "I treat hundreds of people this way and obviously hundreds of children would benefit" -- gives you an idea of what we're looking at. So I think this may be indeed the only way in which to get the situation looked at in a detailed, case-by-case kind of situation.
On the issue of the "do not resuscitate" orders, this has been mentioned to us before for both physically and intellectually disabled people. We know only too well that it is very hard often for health professionals to look at individuals apart from their disability and to make assumptions about what quality of life means. We've been resisting any issues around quality of life because it's such a double-edged sword for individuals, and your support of that is very helpful.
In all of this, is it your sense that what has been presented in Bill 19, with the exception of the repeal of the Advocacy Act, is fixable, is able to allay some of the fears of some of the changes that you've suggested were to be accepted by the government?
Ms Cole: I suppose any bill is fixable if there's a commitment to fix it. I think that many of the proposed amendments that we've addressed in our brief shouldn't happen at all because they're going to be detrimental to at least one part of this population, a part that in fact has equal rights but is not always given the opportunity to exercise those rights. Were there a recognition on the part of government of its obligation not to further disadvantage people with intellectual disabilities, any of them could be fixed.
The Chair: Thank you for your submission today.
1600
FAMILY ASSOCIATION FOR MENTAL HEALTH EVERYWHERE
The Chair: The next submission is the Family Association for Mental Health Everywhere, Judy Wallace and Eileen Boyd. Welcome.
Ms Judy Wallace: Thank you. As an introduction, I'd like to say a few words about FAME. FAME is a family association for families in which someone experiences serious mental illness. We're a community-based organization with branches in Metro, Durham, York and Peel regions at present. Our membership is open to all families regardless of diagnosis, family situation or position.
We've been involved in mental health planning since the days of the Graham report and are currently involved in district health council steering committees, provincial advisory committees, mental health reform work groups, and have made presentations to the legislative subcommittee on numerous bills.
We recognize that one's place in a family has a strong impact on what one wants to see in terms of legislation. The position of parents is very different from that of spouses. Those who are siblings assuming a support or custodial role are different from an adult child looking after an aging parent. However, we feel that all families face similar dilemmas in attempting to secure appropriate treatment, coping with the symptoms of mental illness and understanding a complex and difficult system.
Many of our families have faced impossible situations when attempting to get help for their ill loved ones. Sometimes the legislation has helped, sometimes it has hindered, and sometimes it has just confounded us.
Although families must deal with very difficult situations on a day-to-day basis, it is important to remember that families must also face the long term and what will be available for their loved ones when they can no longer provide. It's easy to argue, "Put me in charge and I'll take care of everything." It's more realistic to say, "Give me the tools and the support to help my relative to become self-sufficient and maintain that status."
Through the process of mental health reform that started under the Graham report, families have been acknowledged as a vital community resource and partner in the planning process. Prior to the downsizing of the psychiatric hospitals and hospital restructuring, families provided over 60% of the community care for consumer-survivors. With greater pressure on fewer resources, families have had to assume a greater role.
Each new piece of legislation sets up a whole new format, expectations and procedures. This in itself presents major problems for families because access to information has always been one of the greatest barriers that families face in working with the mental health and related systems. It's critically important that information, education and support around this latest piece of legislation be mandated in the act and that someone be delegated to ensure that this happens. That will at least ensure that consistent information gets to everyone concerned: health care professionals, consumer-survivors, families, police, courts, public guardian and trustee, and anyone who feels they need it.
Independent rights advisers would be the ideal, from our perspective, as a parallel to the provincial psychiatric advocates' office. The next-best option would be to entrench that obligation in the duties of the Consent and Capacity Board.
I cannot emphasize strongly enough how important education and information about legislation is to families. If families cannot easily access clear information, how can they be responsible attorneys for their vulnerable relatives? Would you expect another group to act without appropriate tools? It's a simple but necessary request: Mandate someone to ensure that those affected by and interacting with this legislation have access to materials and people to assist in understanding. Pamphlets can be displayed in all the places that government brochures and information are usually available, as well as hospitals, doctors' offices, community agencies, pharmacies, libraries. But it must be there.
We see this bill as a mixed blessing. It provides some very badly needed changes, but then adds some items that cause us great concern. Like most community organizations, we struggle to understand the language of legislation and do our best to translate the wording into ordinary language that makes sense to us. Some of this presentation will be questions to you for clarification.
The good news for us is that the definition of "capacity" has been enlarged to include an understanding of the consequences of refusing treatment. So often in the past, individuals with serious mental illness or a mental health problem were only presented with one half of the equation: "Do you understand the proposed treatment?" If the answer was yes and the person refused to comply, that was the end of the discussion and usually the end of the hospital stay.
An additional provision that will assist families is the security of the power of attorney. The process required to withdraw the authorization will for some make it a more onerous document. However, it's important that the power of attorney hold through a crisis and not be withdrawn mid-episode.
Profoundly ill but experienced patients have been released because the definition did not require them to understand and appreciate the consequences of their actions. Sometimes they were released to the street in winter, with no resources or supports, not because they weren't available but because the time to put them into place was not available.
We would propose instead that the assessment be made by one of the following, who would be the choice of the grantor: his or her own psychiatrist, psychologist, social worker or case manager, who has a history with the person and will not interpret idiosyncratic behaviour as lack of capacity; or, if the individual would prefer, an assessor on the prescribed list.
Once the certificate of capacity has been issued and a copy given, the grantor may complete the power of attorney and outline his or her specific circumstances and requests. The power of attorney, along with the certificate of capacity, would then be taken to a notary public, who would swear that he or she had seen both documents, ascertain that the grantor was aware of what he or she was signing and that he or she was the person about whom the power of attorney was written. Copies of the certificate and the power of attorney would then be given to the person named as attorney, and presumably the grantor would keep one for himself or herself. End of process -- neat, simple, manageable, and doesn't cause people to walk away with frustration.
There are existing instances in law in which individuals may sign away rights and privileges with no need to certify anyone's capacity. Pre-nuptial agreements and marriage contracts are common documents in which one person agrees to conditions that are different from what the Family Law Reform Act would provide.
I recognize that in these powers of attorney you may be signing away charter rights and that is a slightly different aspect, but if you make this a very onerous task, people won't do it and then they'll be stuck and we'll be back to the same situation we've had all along.
All families are asking is that the process be simple, straightforward and possible in a few steps without much cash outlay. Our experience with clause 50 is that obtaining the Ulysses clause is more difficult than freeing Ulysses from his bonds.
I understand the rationale for excluding low-risk treatment from the bill, but it seems to create a complication that could be eliminated if substitute decision-makers signed an authorization, much like parents do at the beginning of every school year, that authorizes a facility to provide a variety of treatments as needed. In my experience, that meant that when the children fell and cut a knee, I wasn't called to approve the treatment, but I was called for a broken bone.
Perhaps I missed the definition or limitation of "low-risk" and assumed that it covered a predictable variety of non-invasive care. However, as I thought about it, I wondered if it could include the use of restraints or isolation in a psychiatric setting. They are restrictive but not invasive and therefore could be low-risk. I would prefer to ensure that controlled and regulated acts are not included in this range.
To return to the question of rights advisers, as families we have found that the advocates' office in psychiatric hospitals has been helpful to many of us. We're not all lawyers or mental health professionals, and I do not think an adviser employed by or provided by the institution about which one needs advice is objective or free enough to be very helpful. I want someone who will be knowledgeable and on my side if I need that sort of help. After all, we're very clear about ensuring that those facing the judicial and correctional systems know their rights. Why should it be less for those facing major health decisions? Does incapacity reduce one's status to less than citizen and less regarded than an accused in a criminal case?
1610
Families are not happy about the Advocacy Commission for a variety of reasons, not the least of which was an apparent anti-family bias, but this feels like going from the sublime to the ridiculous. It should be possible to provide a moderately priced program and, as I said before, put it under the auspices of the Consent and Capacity Board, but please don't leave us in the dark.
I'm also concerned about the lack of requirement to notify the person that he or she has been deemed incompetent with regard to treatment prior to administrating treatment. In my brief, I've given an example in my family, but I would like to say that if you're dealing with people in a psychiatric setting and one of their diagnoses happens to be paranoia, which is fairly common, and you try to treat them without explaining to them what the situation is, you are doing nothing but exacerbating their paranoia and you're going to get much worse behaviour and much poorer response than if you talk to them at the beginning.
I would ask that health care providers be obligated to inform the patient of the determination of incapacity, the impact it has on treatment, the patient's right to a board hearing, and to provide the appropriate forms. The attempts to make life easier for the substitute decision-maker or guardian are generally appreciated, but I don't understand lifting the requirement to make a statement. The form was a tangible reminder that the substitute decision-maker was making decisions for another person and taking responsibility for those decisions. I don't believe I heard anyone object to the requirement, and I think it's helpful, to have reminders of your roles in another person's life. This also provides another opportunity for education and clarification, as a health care provider can reiterate the substitute decision-maker's obligations under the Health Care Consent Act.
I must admit to being baffled and bewildered as to why electroconvulsive therapy has been specifically reinstated in treatment. As a treatment about which a constant controversy seems to exist, what is the need to provide it with seeming legitimacy by special mention? There do seem to be some instances in which, as a last resort, it may be indicated. However, provide a protocol that will ensure that all other available treatments have not been effective, that the person is a serious risk unless the ECT is administered, that the substitute decision-maker understands the possible risks, and that the facility is authorized to provide this treatment and has the authorization of the board. I mean the Consent and Capacity Board, not the board of directors.
I'm also concerned that although aversive therapy is discussed, I did not see any standards or controls defined for its use. I understand that a situation in Hamilton underlined the need for standards and controls. Those people who experience severe head injuries and are subjected to cruel and unreasonable aversive therapy will now require more therapy to both undo the damage and provide the skills that were apparently being taught.
The act seems to be attempting to streamline everything. I'm not opposed to greater efficiency so long as it doesn't leave people feeling out of their own lives. The Consent and Capacity Board will be making a great many decisions about people's lives. An appeal procedure is in place under a very tight timetable: seven days. It seems only civilized to provide the individual with the necessary means to determine the efficacy of an appeal rather than waiting most of the appeal time to get a decision and rationale in writing. This courtesy seems reasonable, given that treatment will continue during the appeal anyway.
We're aware that this government feels that user fees will provide the economic support needed to balance the budget. However, I'm concerned that in a request or an appeal to the board, one side has access to all the pertinent information while the other side must pay to examine or copy the material which is their own records. It does seem to weight the scales in favour of the hospital and leave particularly those in limited economic circumstances with an inadequate means of defence.
In addition, it would seem that, while deemed incompetent and receiving disputed treatment, the individual must not only pay for his or her records but find a lawyer, get a legal aid certificate -- if it's still available -- and put the presentation together in seven days. That would be a challenge for someone who's apparently competent. Please don't trample on people's rights and access to those rights in the name of efficiency. If an incompetent patient in a psychiatric facility is faced with this process and the barriers, it will hardly make them feel confident that his or her best interests are at heart.
What is needed is a mechanism to assist the person to understand as well as they can and to feel supported and cared for, not railroaded. I don't know about you, but when medical personnel have tried to force me to take drugs or treatment without my cooperation, I'm not a happy camper, and I've not been diagnosed with any serious mental illness or deemed incompetent.
Powers of attorney for property and personal care are important concepts that enhance the individual's taking of responsibility for himself or herself. If you plan ahead when there's no impending crisis and work out ideally what you'd like to see happen, then you and your substitute decision-maker can feel confident that when the time comes your wishes will be carried out.
However, it's important that these documents are an expression of the person and not the overenthusiastic wishes of caregivers who may be tired, frustrated and focused on their own situation. We know that most families provide wonderful loving care, but we also know that 100% of any group is not perfect. There are families who through their own circumstances may push their own needs ahead of their vulnerable relative. The safeguard is a requirement for independent witnesses. It's not perfect, but it at least makes a philosophical statement about the intent of the document.
There are also situations in which there are no family members who may act as attorney or guardian. Elderly residents of nursing homes may not have anyone left who lives within a reasonable distance. Some immigrants and refugees have no family in Canada, and perhaps no family left. Although the operators of care facilities are often very attached to the residents of their facility, that is not the case in 100% of situations. Please remember the inquest into the death of a former Queen Street Mental Health patient who was residing in a home for special care and who was bludgeoned to death by a staff member of the facility.
As a safeguard to those residents and as a safeguard to the good operators, do not put them in a position of also acting as attorney. It's a dangerous precedent, fraught with potential abuse.
The bill does provide, however, a positive step for those who have found themselves under the public guardian and trustee when a suitable guardian is available. There have been instances in which finding of incapacity meant an automatic referral to the public trustee. When families then tried to become the guardian, the cost of the application to court became prohibitive, as most people were quoted $5,000 to administer a disability pension. The provisions that permit the transfer from the public trustee to another suitable guardian will simplify that process and assist families.
On the other hand, there are instances in which the nature of someone's illness makes family guardianship very difficult and controversial. In those instances, families need the option of the public trustee. It is also positive that guardianship can apparently be split, with the public trustee assuming fiscal guardianship and the family assuming attorney for personal care, for instance.
It's also critical to provide for those periods when an individual who experiences serious mental illness is incapable as well as for those periods when he or she is capable. The nature of the illnesses as chronic means that individuals are always on a continuum from illness to wellness. The provisions in the Mental Health Act have always provided for that contingency. Many other chronic illnesses also have the impact of producing periods of incapacity that can be short-lived -- thyroid conditions, diabetes and others.
This bill discusses the assessors and evaluators, but the definition of "treatment" seems to exclude these categories and the work they do. Part of our concern is the cost of these assessments. Under previous legislation, an assessment for the purposes of establishing capacity could cost between $150 and $250 an hour for what could possibly be a four-hour session. The cost of $600 to $1,000 to determine that one was capable of assigning a substitute decision-maker is prohibitive and makes a mockery of the law.
I'm not clear about the process required for determining capacity. The act says that it presumes capacity for everyone. Does that presumption apply to those with a history of mental illness? If not, then what needs to be done? Is it the same complex system of hiring a capacity assessor from an approved list and passing a checklist of questions? Is the certificate of capacity then provided to the individual on the spot or sent in the mail?
On the other hand, this legislation does not discuss the cost of an assessment at all. Once again, we are between the sublime and the ridiculous. An independent assessor will take more time to assess an individual whereas the psychiatrist of record or other therapist should be able to make an assessment based on historical knowledge as well as the current situation. If in fact the intent is to fairly determine capacity to assign an attorney, then surely the process should not be financially prohibitive so that only those well-to-do mentally ill will have the option while the rest have to be content with the public trustee.
1620
Once we have determined who should be the substitute decision-maker and ascertained that the role is currently necessary, the new act provides for only one free chance to prove one's competency. After the one chance, it then becomes a matter before the courts. How does someone who is in receipt of a disability pension afford the cost of a court appearance? Surely we're creating a class system in which those who can afford the assessors and the courts are able to argue their cases, while those who have little means because of their illness are penalized. Is this the Ontario we wish to create? I hope not.
I must admit to some amusement in the section that covers access to records. For most families, getting the most barebones information has been a herculean task. The bill now proposes that anyone who makes application for guardianship should have access to records. Ladies and gentlemen, I know of situations when a facility would not even tell a family member that their son or daughter was a patient because it breached confidentiality, and now a mere application permits full access? I would implore you to think out what you're saying before this bill becomes an act. Yes, families want and need more and better information than is normally available. Yes, families would like to be able to discuss their perspective with medical professionals. Yes, families would like to be consulted before decisions are made that affect them, like discharge to home. But to shift from no information to full disclosure to an applicant for guardianship seems a little extreme.
We would recommend that good communication occur between the guardian and the attending staff, but that guardianship needs to be established first and that consideration be given to extending that courtesy to family to whom the patient will be returning to live.
Under section 1 of the bill that revokes the Advocacy Act, we have some concerns. Although the act was not considered to be family-friendly, it did ensure that there were standards for advocacy and rights advisers, which seem to have disappeared. For instance, the bill states that volunteers who are acting out of good faith cannot be held liable. That frankly frightens me. I could cite numerous examples of well-intentioned volunteers who have advised vulnerable people to take a course of action only to find that it has very deleterious effects. Are we now expecting very vulnerable people to operate under the philosophy of "buyer beware"? If that is the case, then, ladies and gentlemen, I am appalled. How often has a government tried to protect older women from the schemes of con artists? Are we abandoning vulnerable people to a worse fate?
I'm equally appalled that the legislation exempts professionals and volunteers from liability if they were acting in good faith. Are we to believe that if a medical, judicial or other type of professional acted in good faith and the impact of their actions resulted in damage to the person or death, it's all right? That being the case, there's no longer a need for liability insurance, because what professional is going to say they acted in bad faith? Please consider the implications of this clause. Recourse to civil suit must be available to cover cases where good faith is not enough. If that recourse is removed, then we are all at risk. And like the joke about cars produced on Monday mornings and Friday afternoons, I wouldn't want any medical procedure on days and times when, despite good faith, the medical staff may not be up to scratch.
Volunteers are also exempt from liability if they acted in good faith. Are we putting vulnerable people in situations of risk with no recourse because somebody who wants to help, perhaps from their own agenda, creates a greater mess? There is no lack of horror stories about vulnerable people acting on the instructions of a well-wisher and ending up ill, in danger or in situations that they had not anticipated. I've given you two examples of that, examples that we've dealt with in our office and tried to mop up in the last couple of weeks.
Many organizations have been acting as advocates for vulnerable people for a long time. Case managers are often advocates. In our organization, the supportive visitors act as advocates, public health nurses, home care workers and the list goes on. We are liable if we provide the wrong advice. We are liable if we foul up and we should be held to account. I do not believe that anyone should not be responsible for what they say or do. Please don't legislate that option.
One final concern: The bill seems to provide a means by which the public guardian can recoup expenses from vulnerable people. Ladies and gentlemen, what cost comes first? Rent and food or recovery for time spent dealing with a client? In many cases, those placed under the public trustee have had concerns about funds, real or imagined. That may result in numerous phone calls and face-to-face interactions. Should someone on a disability pension pay even the nominal rate of 50 cents a call on an already very limited income because their illness prevents the ability to trust a bureaucracy? Please consider that cost recovery may result in an inhumane system of penalizing the disabled and poor to show a balanced fiscal budget. The costs may be higher in the long run.
The bill also provides for physicians to go to the board for determination if the attorney refuses to agree to treatment that the doctor feels is necessary. If the attorney is acting on the wishes of the incompetent person and those wishes were made during a period of competency, except in an emergency would this be necessary? If new treatment was developed after the power of attorney was executed and the document was not updated to reflect this, surely the doctor and the attorney can discuss this, go to mediation or find some form of resolution. The bottom line, however, should be the person's expressed wishes. If they aren't respected, why bother with the power of attorney at all?
In conclusion, this bill provides some elements that families have been lobbying for and dreaming about for a long time. But if the cost of gaining the provisions for attorneys for personal care is the acceptance of many other provisions, then it's an expensive piece of legislation for all of us and will have expensive repercussions in the long run.
I would hope that the intent of the Health Care Consent Act is to provide people with the opportunity and the means of providing their own care when they're unable to make decisions on the spot. My fear is that it will provide a means of control for very vulnerable people that will backfire in the long run as their attorneys age and are unable to provide the structure and support that is needed.
Ms Boyd is now going to talk about her concerns as a family member.
Ms Eileen Boyd: With the advent of the new government, we family members gave a sigh of relief on hearing that the Advocacy Act, Substitute Decisions Act and Consent to Treatment Act were being reviewed, and hopefully simplified to facilitate help for our loved ones. Our hopes were raised when we read that the new act strengthens the role of families in making decisions on behalf of incapable relatives. In the words of Attorney General Charles Harnick, "It minimizes the role of government in people's lives and puts decision-making in the hands of individuals and families."
With relief we read the words of the Minister of Health on November 22: "The legislation will hold the advance directions of an individual and existing power of attorney with the highest regard. Only in situations where someone has absolutely no connections will the state step in. We've taken significant steps to revise the previous government's legislation to allow the family to make substitute decisions for loved ones without unnecessary bureaucracy. We have established a workable streamlined process for admitting an incapable person to a care facility."
Hearing all this, we gave a sigh of relief. And to the credit of the new legislation, improvements have been made in many areas, but in the area where I would choose to focus, which affects many in our organization, I still find we are left with unworkable procedures which sound good on paper but which will not work, thereby leaving many needy people without access to the streamlined method of getting help.
I refer to the Substitute Decisions Act, section 50, which sets out the requirements for a special provisions power of attorney. This, as I understand it, would enable a substitute decision-maker to have a family member taken to an institution for help if the grantor had pre-stated these wishes at a time when he or she was in a capable state of mind. This legislation we applaud, as it provides the necessary care and protection which would expedite the return to normalcy.
Many who suffer with mental illness have long periods when they're capable and can instruct a substitute decision-maker to take over the decision-making during any relapses when they may become uncooperative, paranoid, confused, obstreperous, lack judgement and descend into unreason.
These pre-stated directives must include the temporary sacrifice of certain rights: the right to change their mind in a crisis, the right to a review board hearing, which would delay treatment, and the right to freedom. These rights at this time are impediments to a speedy recovery and their suspension is not unreasonable under the circumstances. We're not taking our unfortunate relative to the guillotine; neither are we incarcerating them in the mental institutions of the past, though this legacy still affects our thinking. In fact, we are availing them of the best help we know at present and we are following their pre-directed wishes. All this is at present, as I understand it, in the act.
1630
However, this ideal procedure will not work for some and will not be utilized by many needy people. The requirement of assessment of capacity before a power of attorney with special provisions becomes effective will be the stumbling block on which it fails.
Firstly, the perceived affront to an often vulnerable personality in having to have their capacity formally assessed before they can make such a document: People who succumb to mental illness often have short tolerance levels, high irritability and very short fuses. Anyone who deals with them will know the personality problems to which I refer. To willingly submit to an assessment in their good periods is not an easy requirement to fulfil, thus making the legislation unfeasible.
Secondly, the finances of such people are often in short supply as they struggle to build their lives in their productive times. To suggest a visit to an assessor at the $80- to $150-an-hour rate charged is a final blow and deterrent to action.
We are well aware of the legal concerns for this assessment in case of later contestation but would argue that this requirement of proof of capacity is not a requirement in other --
The Chair: Excuse me, Ms Boyd, your time is up. That is the one half-hour. We must proceed. I'm sorry. We've got another problem -- we might go later today if it is decided.
Mr Marchese: It's only a minute and a half.
Ms Eileen Boyd: It's only one minute.
The Chair: We've already gone over the 30 minutes by one minute. I'm sorry. We have your written statement and we can conclude it. I thank you very much for your presentation today, and I'm sorry I had to interrupt you, but we have no choice.
We have before us a Mr Lillico of the firm of Lillico, Bazuk and Kent. He's from Peterborough. He is here on the wrong day, through inadvertence. He's supposed to be here tomorrow. Tomorrow is his birthday. I'm asking your indulgence at this time, not to hear him now but at the end of the day for 10 minutes. He has a written brief and he's agreed that he could highlight it for 10 minutes, which means sitting after 5:30. Is there agreement for that? Thank you.
Mrs Johns: We'll have to sing Happy Birthday to him.
DIXON HALL NEIGHBOURHOOD CENTRE
The Chair: Our next organization is the Dixon Hall Neighbourhood Centre, Mr Toby Druce.
Mr Toby Druce: When I timed my comments this morning, it was only 10 minutes, so perhaps that'll allow the other gentleman to step in.
Good afternoon. My name is Toby Druce and I'm a community development worker for Dixon Hall Neighbourhood Centre, a non-profit, community-based organization. Dixon Hall is located in the southeast corner of Toronto and includes Regent Park, Canada's largest subsidized housing complex, in its catchment area. Our organization serves the very young, under two years old; the very old, over 90; and every age, race, culture, class and ability level in between.
While the proposed amendments to the Substitute Decisions Act and the Consent to Treatment Act are disturbing and indicative of a giant backward step in terms of our commitment to the rights of the vulnerable members of our society, I will be confining my remarks today only to the intended repeal of the Advocacy Act.
Let me begin with the Oxford definition of advocacy. Oxford describes advocacy as the process of pleading in support of a person or policy. It goes on to describe it as the function of an advocate, and it describes an advocate as one who supports or speaks in favour of a person or policy; one who pleads for another.
It's significant that both words are nouns. They name a person, the advocate, and a thing, advocacy. This naming is important because it helps to define advocacy and the advocate, thereby taking the process and the person out of the realm of abstract philosophical debate. "Advocacy" is a venerable term that has long been recognized as an essential component of a just and equitable social order.
Advocacy and the role of the advocate is not unknown to any of us. Perhaps the most readily available example is that of the lawyer. When we hire a lawyer, we are in fact hiring an advocate, someone with a specialized body of knowledge who can represent us and our interests.
We expect, in hiring that lawyer, that they will have access to and will collect all the information they require to represent us; they will inform us of our rights and responsibilities; they will prepare our case and take instruction as to the execution of that case from us; they will defend our rights in court; they will communicate with us as to the impact of any decision made that will affect us; and they will continue to take instruction from us until the case is concluded. These are the essential steps of any good advocacy.
In recognition that everyone is entitled to an advocate in the legal system, we as a society decided to ensure that everyone, regardless of their ability to pay, would have an advocate available to them if they required one. Further, through legislation, we decided on a set of minimum standards that all legal advocates must meet in order to be called lawyers. Of course, not all lawyers are good advocates, and certainly not all good advocates are lawyers. However, the process of advocacy and the skills and abilities of the advocate do not change, regardless of the context in which either is carried out.
Many advocates are non-regulated practitioners of the art of advocacy, and this is not necessarily a bad thing. It allows for increased access to an advocate by those who require one. Questions of access are central to any discussion on vulnerability.
Our lawyer friend in the previous example has a right to access her client and a right to access the information that will be presented in court by the prosecution. Similarly, the client, as discussed earlier, has a right to a legal advocate regardless of their ability to pay and the right to refuse or change their appointed advocate if they so choose.
Unfortunately, the same rights of access do not exist for those who desire a non-legal advocate. I want to be very clear that I am not suggesting that all advocates should be lawyers. There is a crucial role for advocates outside the legal system in resolving disputes prior to an individual seeking legal remedies to their situation.
Resolving problems before turning to legal recourse is a win-win solution. The already overburdened court system is relieved of additional cases and the cost savings to all stakeholders, especially government, are substantial. Most important, though, is that a vulnerable person has had their rights ensured in a timely fashion. Such swift action can often be the difference between life and death, as in the case of Joseph Kendall or Marion Post. If you're not familiar with their cases, then I'd refer you to Advocacy: Now More Than Ever, page 2, the last paragraph.
In order for an advocate to be effective and to faithfully discharge their responsibilities, they require access to certain kinds of information and participation at certain steps of any decision-making process. An advocate without due access is like a box of chocolates: You never know what you're going to get.
The Advocacy Act was the first time the role of non-legal advocates was clearly spelled out in legislation. The act provided advocates with the tools they required to do the job. It also ensured the accountability of the tool users. The act established an independent body that was charged with delivering advocacy services province-wide.
As an institution of the government, the Advocacy Commission maintained its accountability to the people of this province through their elected representatives. As an independent body governed by representatives from consumer groups, the commission maintained accountability to its clients. By reducing its operating expenses by over 50% in the first year of operation, the commission maintained its financial accountability to the taxpayer. By its commitment to enhancing the effectiveness of existing groups, it demonstrated its accountability to its own ideals of fostering partnerships, improving access, equal representation and elimination of costly duplication of services. I would challenge this government to find another example of a government agency that has done so much with so little.
Vulnerable people have a right to be heard and to have their wishes respected when it comes to making decisions about how and where they will live. The Advocacy Commission provided people with the information and assistance they required to make informed decisions about their lives. In the absence of such a body, there are no guarantees that people will have access to the information they require to make sound decisions.
Vulnerable people have a right to access an advocate who can provide them with information and who can plead on their behalf. The Advocacy Commission had the tools to ensure that this process was available.
1640
Vulnerable people have a right to an advocate who is competent and who clearly explains his or her role, who is accountable to a higher power and who is explicitly instructed to take direction from the person who requested their services. The Advocacy Commission could have built people's confidence in this regard had it been given the opportunity to complete the ground-breaking work it had done in consulting with client groups across this province.
Accept that vulnerable people exist in the province of Ontario. Accept that vulnerable people have the right to be heard, to access the information and decision-making processes that affect their lives. Accept that people have the need and the right to an advocate who can assist them understand and exercise their rights. Accept that the advocacy system provides a net cost reduction to Ontario's taxpayers by avoiding costly legal actions or, more sadly, inquiries into fatal cases of abuse or neglect. Accept that an individual requesting the services of an advocate has a right to expect that the advocate will be well trained, well supervised, well experienced and equipped with the tools she needs to do the job right.
Accept any of these things and you must accept that the Advocacy Act and the resulting commission is the best, most accessible, most affordable and accountable system ever created anywhere in the world.
If you members of this committee do not believe that vulnerable people in Ontario require an organized system of advocacy, then I encourage you to visit with any group in your constituency that deals regularly with children, with women, with seniors, with parents, grandparents, sons, brothers, sisters and daughters. The documented cases of people in vulnerable positions being abused is legion. The undocumented cases are infinite.
To accept the myths that advocacy is bureaucratic, expensive, intrusive or destructive to families is to accept a lie. As political representatives, your task if to make decisions that are in the common good, not simply politically expedient. Ontarians need an organized, accountable, rational and affordable advocacy system. We have that in the Advocacy Commission, and to let the commission die would be an inexcusable affront to the people of this province.
With the Advocacy Act and the resulting commission providing so much to Ontario, it seems inexplicable that a proposal exists today to eliminate it completely. Not since the Avro Arrow have Canadians had such an opportunity to lead the world in innovative design. The Arrow died as a result of backroom politicking and in retrospect is seen by many as the great missed opportunity of the 20th century. How sad it would be if we have not learned from our mistakes.
With respect to recommendations, rather than unnecessarily repeat the recommendations put forth by the Advocacy Commission, I will state here that I urge the committee to consider, as a minimum, accepting in full the recommendations put forth in this document, Advocacy: Now More Than Ever.
If you have questions, I'd be happy to answer them.
Mr Marchese: I want to thank you for your presentation, Mr Druce. The work of Dixon Hall is well known throughout Toronto and I'm sure throughout Metro, and parts of Ontario, I suspect, so you come here with a great deal of credibility in the field.
I think you've described advocacy very well. I think you've defined it very well in the many pages. It's sad that it should take that long to have to convince some members or many members of why we need it, but it has to be done over and over again.
You make the case about needing an organized system of advocacy, because if it's not organized, we have a problem. "Ontarians need an organized, accountable, rational and affordable advocacy system," and then you make a point about why we need the commission as well.
The argument makes the case that we don't need this kind of advocacy. By that they mean that there's some other kind of advocacy, on which I'm not certain what they mean. Some other members say it shouldn't be institutional; it shouldn't be governmental. It should be left to families, individuals and organizations. Mr Johnson will say: "But you're doing a great job, Dixon Hall, of doing advocacy for the folks. Isn't that great. How can we support you to do that better?" That's the kind of question you're likely to get.
Can we do it without the Advocacy Act, without the commission, without rights advocates, and if so, what can we do to help you?
Mr Druce: Theoretically, anything is possible and you could do good advocacy without the Advocacy Act and without the Advocacy Commission. But in order to be good advocates you need to have in place the tools to get the access to information and to decision-making that the Advocacy Act provides and which is not available anywhere else.
I respect that the government is keen to give the tools to its transfer partners to accommodate the kinds of things its transfer partners need to do, and advocates are no different really. To do the work that we do, we need to have good tools, those tools being legislation that ensures, on behalf of the people we are working for, that we have access to information we need to inform them.
Mr Marchese: The act gives people the right of entry, which means that where there are cases of abuse, someone has the right to enter, observe, identify and then have authority to deal with the problem. Do you have right of entry? Do your organizations have right of entry at the moment so they can help abuses where they observe them or see them or hear them?
Mr Druce: No, we don't. I guess it always begs the question, who will guard the guardians? Without some legislation in place to ensure that people aren't at risk by our having that right of entry, I'd not be comfortable taking that on.
Mrs Boyd: Just very briefly, I want to share with you that more than 30 years ago I was sent as a volunteer to Dixon Hall by my youth group and learned a lot of the things I know about the need for advocacy and the need for the kind of work you do there. I'm glad to see, this many years later, that the enthusiasm and the clarity around the need for advocacy is still there among the staff. Congratulations.
Mr Ron Johnson: Mr Druce, I want to thank you for your presentation. My colleague Mr Marchese is right: I will commend you on the work you do at the Dixon Hall Neighbourhood Centre. I think all the type of advocacy work that is being done by local organizations at the grass-roots level should be commended and should be encouraged. I want you to know that really is the goal of this government, to foster that kind of commitment to the vulnerable.
It's really not about building a big $18-million bureaucracy to deal with advocacy, because that doesn't work. What we need to do is to approach this in a different manner that will encourage friends, family, volunteers, existing organizations, and that's really where we're going with this.
We've been criticized by Mr Marchese in the past for not having a plan ready now. What we want to do is go through a consultation process to develop that plan. We want to hear from people like yourself who have valuable input, who work in the field, who understand what advocacy's all about before we develop a plan. If we brought a plan forward now, we would've been criticized because we didn't consult.
That's where we're coming from. We're consulting now. We want to hear what you have to say. We did two and a half weeks of stakeholder consultation at the ministry; now of course another three weeks of consultation. We will be coming forward with a plan for advocacy in the province of Ontario, and that plan will be coming forward in a few months. I want you to understand where we are, and the reason there's not a plan on the table now is that we wanted to consult first.
My question to you is this, and again Marchese's right in what I'm going to ask and he asked it a bit himself: When we bring forward some policies with respect to advocacy in the province, help me understand what your role would be in terms of your organization, how we can help you do what you need to do in terms of providing advocacy, and not just you but other organizations in the province as well that are currently in place and currently providing that kind of service.
Mr Druce: Speaking for myself, as somebody who is a social worker working in the social services field, I would say that the best thing you could do to help the clients I see would be to bring back the Advocacy Commission, because that's what we asked for for a long time, to have a body like that, not at $18 million a year, but then my understanding is that they didn't need to spend $18 million a year either and they brought the money down.
Mr Ron Johnson: I think that's a valid point. I think you have to understand that we have, for example, the proposals from the Advocacy Commission that we are looking at, and we're looking at very closely. I want you to understand that we take advocacy very seriously, and that we are going to look at all the proposals that come in and put a plan in place that's really effective and involves family and volunteers and existing organizations, and get rid of the big government bureaucracy this province has been plagued with, not just in advocacy but in government in general.
The Chair: Thank you very much, Mr Druce, for your presentation.
1650
UNITED STEELWORKERS OF AMERICA
The Chair: Our next submission is the United Steelworkers, Carolyn Egan and Dan McNeil. Welcome at the end of a long day.
Ms Carolyn Egan: Thanks very much. My name is Carolyn Egan. Sitting beside me is Dan McNeil. We are both here representing the United Steelworkers of America.
Some of you might be asking yourselves why a union like the Steelworkers would take the time to make a submission on the Advocacy Act, and I want to outline what those reasons are and what our perspective is.
First of all, we are here because of the work we do. I myself am a health care worker. All Steelworkers don't work in mines or steel mills. There are nearly 1,800 health care workers organized by my union. Dan is the chairperson of the Steelworkers retirees association. He represents nearly 10,000 retired members of our union in Ontario. We both know from experience that seniors and chronically ill adults make up a huge number of the vulnerable population in this province, and it helps us and our union to understand the importance of advocacy.
We also have an interest as union members. We know what it's like to have in place an effective and very powerful advocate on behalf of working people. We look to our union to defend us, to assist us, to speak for us, to educate us, to empower us, to ensure our dignity, our safety at work, our rights, and to better our daily working lives. We know that is a real struggle and it helps us to understand the need people have for advocacy in this province, because alone it's extremely difficult. When you're together or have someone working on your behalf, it makes the whole process an awful lot easier.
Finally, we also have an interest as ordinary human beings who live within families and communities in this province. Both of us, and I'm sure all of you, know people who are developmentally disabled, who are psychiatrically disabled, who are physically disabled, who have terminal diseases, who are elderly and frail, who live in institutions, who are infirm or chronically ill.
These are our friends, our family, our neighbours, our associates. Although we love and care for them, many of us live impossibly busy lives, particularly women with child care responsibilities. We work. We have very little time, and as much as sometimes we would like to, we are very much unable to meet their special needs or be there when they need us. That helps us, I think, to understand the urgency of advocacy and why the Advocacy Act was such an important tool and resource for people in Ontario.
In this province today, there are more vulnerable people than ever before. The economic crisis has created a circumstance where there are many, and most estimates range as high as half a million. We think our society should be judged by how we treat these vulnerable members of our community.
I think everyone in this room knows it's no secret that in our view, the Steelworkers' view, the record of the current government, we do feel, is nothing short of shocking.
Cutbacks to welfare payments have reduced the real income of thousands of people who rely on general welfare or family benefits. User fees under the Ontario drug benefit plan have added a new cost for seniors and people with disabilities. The threat of a revised definition for disability leaves many anxious about their eligibility for pensions and access to dental, drug and extended health care plans.
The repeal of the Employment Equity Act effectively puts an end to job opportunities and accessible workplaces for the disabled. Cutbacks to education have inevitably removed the money for assistants and assistive devices in the classroom. Cutbacks in legal aid threaten the rights and abuse protection relied upon by many disadvantaged people.
Massive reductions in transfer payments have severely limited access to transportation for the disabled. The downloading of services and costs to municipalities have closed community programs designed to reach out to and integrate vulnerable people. Bed closures at psychiatric hospitals and institutions for the developmentally challenged have left many, literally, on the street in the absence of any community support.
The cancellation of co-op and non-profit housing slammed the door on vulnerable people waiting for accessible and affordable accommodation. Cutbacks in emergency housing or shelters leave little room for seniors or people with disabilities who have been abused in an institution or in their own home.
All of these government actions abandon, we feel, vulnerable people to marginal and unfulfilled lives, marked by poverty, isolation, unemployment, abuse and discrimination. Each government action, alone and collectively, is a mark of shame, in our view.
If these things are done in the name of cutting government spending, then they are unbelievably shortsighted and mean-spirited. If they are done in the name of lowering income tax, then they pander to selfishness and consumerism. If they are done in honour of reducing the deficit, then they are guilty of ranking the lives of human beings beneath the bottom line of a balance sheet. That too, in our view, is a mark of shame.
In the midst of this frenzy of government cutbacks, all of which have had a terrible impact on vulnerable people, it comes as no surprise to us that this Conservative government has also decided to repeal the Advocacy Act and dismantle the Ontario Advocacy Commission. It's no surprise, but on behalf of ourselves and our union, we have to say that it's hopelessly wrong and we have to oppose it.
We know we are not alone in this opinion. We have read other briefs presented to the standing committee by the Advocacy Centre for the Elderly, the Toronto Mayor's Committee on Aging and the Ontario Coalition of Senior Citizens' Organizations These groups have provided thoughtful and detailed criticisms about the changes which the current government wants to make to the Consent to Treatment Act and the Substitute Decisions Act. They have also registered their protest at the elimination of the Advocacy Act and the commission. We join these groups in their concern and urge you to look carefully at their advice and their recommendations.
These acts were the products of decades of studies, reviews and reports. They came into being as a response: to horror stories coming out of care institutions; to adults nearly dying of dehydration, malnourishment and neglect; to lurid headlines about elder abuse; to tragic deaths of street people freezing in bus shelters; to cases of over-medication, unnecessary interventions, crippling use of restraints.
Mr Dan McNeil: Hundreds of consumers and service providers helped to give shape to the legislation and the commission. I can attest to that personally. As chairperson of the Steelworkers Organization of Active Retirees, I helped distribute the proposals and information to thousands of our members. We even held a conference and the centrepiece of the discussion was the purpose, objectives, implementation of the three acts.
I was also the co-chair of the Ontario Coalition of Senior Citizens' Organizations, an organization that represents 80 associations with a membership of over 500,000. In that capacity, I participated in many discussions about the acts and heard a great deal of feedback about their relevance to seniors and significance in their lives. I can say without hesitation that all three acts received widespread acceptance. Seniors across Ontario expressed their relief that finally all the talk was over and something concrete would be done.
That's why I'm so bewildered at the exercise we're having here today. The one thing that's been missing from the debate so far is any compelling or even plausible reason why the government is doing all this at such a great cost to the rights of the most vulnerable people in our society.
We would submit that the answer is found not in any principle, but in who benefits from those changes: the medical profession who will no longer have to be concerned about having to defend their decisions in the face of well-informed review; operators of health care institutions whose treatment of their patients or residents will no longer face public scrutiny; families who are prepared to make choices in their interest rather than in the interest of their vulnerable relatives, and we all know that happens. In short, everyone involved in the care of the vulnerable in our society except the people directly affected themselves.
The Advocacy Act enshrined the rights of vulnerable people. The commission made sure that those rights could be enforced. For hundreds of thousands of people, it was the first time they could be assured of knowing their rights, of making their wishes clear, of seeing a range of choices, even of arriving at their own decisions.
This new-found power raised issues around health care, employment, housing, transportation, education, social services. It provoked questions about medication, therapy, medical interventions, institutionalization. It brought to light environments of isolation, abandonment, neglect, abuse, unfortunately even violence. It confronted and challenged situations of control, power, hierarchy, harassment and intrusiveness.
They were never abstract notions to vulnerable people. But suddenly they had someone they could talk to, complain to, ask questions of, make decisions with. Suddenly they were offered some measures of protection, entitlement, self-respect, dignity and of course independence.
1700
In the end, that's what advocacy is all about. As parents, families, workers, seniors and community members, many of us have acted as advocates ourselves and that will always continue. But when we can't be around, when we can't be there for our loved one, or when there isn't a loved one in sight, then we need to have advocates in place and a system of advocacy to make sure that vulnerable people have someone whom they can trust, who will be on their side, acting on their behalf, speaking out about their concerns, protecting them from abuse, helping them to get what they want and what they justly deserve.
The Advocacy Act and the Ontario Advocacy Commission were on their way to meeting those needs. They were there to ensure that their clients' legal and human rights were recognized and respected. They were there to assist clients in receiving the health care and social services to which they were entitled. They were there to help their clients lead lives that were as independent and productive as possible. They were there to protect disadvantaged people from financial, physical and psychological abuse. They were there to promote respect for the rights, freedoms and dignity of the vulnerable. My partner will take over.
Ms Egan: That's why we urge this government to step back and take a second, more informed look at the Advocacy Act and the work of the commission. In its short life, the Ontario Advocacy Commission consulted widely across the province with consumers, service providers, family groups, representatives from health and long-term-care institutions, and staff from correctional facilities. It set up a system to deliver rights advice, individual advocacy, systemic advocacy, public education and community development. It promoted the role and training of volunteers and professional advocates. It managed to write and distribute a wide range of materials about the act and the future plans of the commission.
That kind of work, the experience and knowledge gained, cannot and should not be stopped even though the repeal of the Advocacy Act may slow its progress. We call upon this government to accept the recommendation from the Ontario Advocacy Commission to establish a barebones, non-profit corporation which would focus on community development, public education, training and systemic advocacy. It is far less than what is required, but as a replacement for the commission it is the very least that a caring government in a civilized society owes its most vulnerable citizens.
Mr Marchese: We thank you for your submission. My view is that it's a very thoughtful presentation of the situation that vulnerable people face and what the responsibilities of governments are. You make the case, as I do, that governments have a responsibility for advocacy. The government doesn't believe that government should be involved in the field itself. They believe in supporting organizations doing that; I'm not sure how. But this is the fundamental difference: We believe that governments need to be involved. The Advocacy Act gave people a voice. The commission gave people a voice, a coordinating voice in all of the areas that you mentioned around community development, training, education and dealing with systemic problems, because it recognized the reality that there is abuse out there. Not everybody's committing it, but many are, and we need a system whereby governments have some authority, through the Advocacy Act and the commission, to be able to get to it.
Your suggestion is that we establish a barebones, non-profit corporation which will focus on those very issues. My sense is that this is a reasonable thing to request. Mr Reville said that would cost approximately $3 million. It's much less than the original $18 million that had been proposed for it, but it would again be the focus of what people have asked for for so many years. I agree with you that taking it away would be a problem.
I want to agree with the argument you made that sometimes we forget the causes that make people very vulnerable. When we as governments reduce the social assistance that we give to them, it makes them even more vulnerable. I think you make the case that it's as a result of this that more than ever we need advocacy, for the governments to have it. To take it away impoverishes those vulnerable people even more. We thank you for your comments in this regard and we hope that the government will listen, at least, to those modest compromises that you're proposing.
Mrs Boyd: I'm going to thank you as well. I think one of the things that you both probably know, as people who have done work with the union and with collective bargaining, is that one of the issues around the imbalance of power that happens in that forum is very similar to the issue of imbalance of power between the medical profession or health care providers in general or facility operators and the individual who's there, and that's lack of information, the inability to actually get full information and to be able to know what is going on.
When you say you would agree with the barebones kind of non-profit group that's suggested by the Advocacy Commission, would you see that as being effective only if there were legislative right of access to the individuals and also access to the information that you require in order to advocate on their behalf?
Ms Egan: Yes.
Mrs Boyd: Because that's one of the major issues that we've seen. I want to thank you for giving us the cumulative catalogue of what has happened to disabled people in this province over the last few months, because it is the cumulative effect of everything that has happened that is so discouraging for those vulnerable people, and we haven't had quite as clear a list of all the various things that have affected them adversely as you've given.
Mr McNeil: The abuse to the elderly is terribly on the increase here in Ontario, as you probably all are well aware. One of the very sad things about it, of course, is the increase of the women of the family who are leading the way in abuse and many other things.
I'm sure you're all aware of what happens in the United States. Every month in the United States one senior in every state, at least one senior in every state, is found abandoned on the road or somewhere, just left by the family because there's no one to fight for them and the family can't look after them. From what I've seen happening in the last year, the last months at least, I don't think we're too far away from that here in Ontario, unfortunately. Unless we get an advocacy set up that will take care of that, I don't know what's going to happen.
As I mentioned in the report, I was responsible for putting that conference on. I invited a lawyer and I invited a minister from the government, thinking I'd have a great confrontation and there'd be a great free-for-all and all of the participants would be able to really shower a lot of questions on them. It was a small group; there were 68 people there. There was no confrontation, no argument. The lawyer had to admit that it was probably one of the best programs this province had ever seen. The only thing the lawyer happened to say to me -- and understandably, being the lawyer -- was that there should maybe be some more money for the legal aid system.
Mr Ron Johnson: I want to thank both of you for your presentation. I want to say at the outset, and I've said it many times before, that this government by no means has given up on advocacy; in fact, we support it. What we differ with of course is the approach. I think it's important to recognize that all we have said no to at this point is this $18-million bureaucratic boondoggle of the previous government. That's all we've said no to. We support advocacy.
I want to make a couple of points. We believe that the current Advocacy Act is confrontational. It's adversarial. It doesn't really promote in our view the kind of family, the kind of friendship, the kind of existing organizations that are out there in terms of providing advocacy. Any time you get a big bureaucracy involved, you take away quite frankly from the direct, grass-roots kind of service that I think we all want to encourage in government.
1710
I want to add too that you mentioned the commission's report and I want to suggest to you that we are looking at that. We're looking very closely at it. It's one of a number of ideas and suggestions that we've had during these hearings that we're going to look very closely at in terms of coming up with a concrete plan for advocacy that will really meet the needs of the vulnerable through the kind of support systems we'd like to put in place. We talked about training as part of the government's role. We talked about support mechanisms as part of the government's role. So I just want to highlight that to begin with and I want to say that we're not the only ones who have said that. Even my friend, my Liberal colleague Ms Caplan, on November 27, said that the current structure of the Advocacy Act was confrontational and adversarial; she agreed with that as well. So it's a widely held view.
A couple of points I just want to quickly clarify if I can: You indicated within your presentation -- and I'm concerned because there are in my opinion some inaccuracies here -- "The medical professions...will no longer have to be concerned about having to defend their decisions in the face of well-informed review." I would suggest that's incorrect. There is the College of Physicians and Surgeons, which carefully monitors doctors' performance in terms of direct patient care.
As well, you said, "Families who are prepared to make choices in their interests rather than in the interests of their vulnerable relatives." Again, there's a mechanism in place within the legislation, section 35, that's very clear in saying that if a substitute decision-maker is making a decision on behalf of their family member and it's not in the best interests of that patient, the doctor can appeal that. So it's important to recognize that there are safeguards put in place to ensure that the patient is always looked after and that the vulnerable person's wishes are always first and foremost.
Mr McNeil: But that's not really true. As a person so involved with seniors, I come across it all the time; it's happening every day. There's a family member somewhere taking advantage of someone, including talking them into handing over all of their rights, bank accounts and the whole thing. I don't believe the legislation is there. I would like to believe that the doctors are very honest and helpful, but the complaint has to come to them. What we're saying is, that's not happening. The vulnerable person is in the position where they're very scared to make complaints to anybody, let alone to a doctor. That's where we see the need for the advocacy system. I wish I had the packages that the previous government put out to give to you, you know. Like I said, I gave it to seniors all around. I never got a complaint from them. I have two personal friends who died in the last five years. I know the family was taking advantage of them and I tried to do something about it, but I couldn't. I wish there had been a good advocacy system in place then for those two people.
Ms Egan: If I may just add this addendum, I think the point really is that rights and caring have to be ensured. What we're saying is, what existed prior to this wasn't ensured. The Advocacy Commission and the Advocacy Act were not simply the result of the NDP policy. They were the result of years and years of problems highlighted through coroners' reports, through submissions made by seniors' organizations, through health care organizations and those who were involved in advocating. No commission, no act is perfect, obviously, but we have a tremendous fear that if it is not enshrined in legislation, if there is not a way to protect what are the rights of all people in Ontario, then there's going to be abuse.
That's what we're here to suggest you take a very strong look at, if not the first, then the proposal that we put forward at the end, which is much more cost-effective perhaps and is not perfect. We feel people will be sentenced to very, very hard times in this province -- it's the lean, mean decade anyway -- and this is one thing that will make sure that people are at least treated with dignity and respect, particularly in their elderly years. We're very fearful, particularly from the experience of our older members, that it's not taking place. So we'll leave it at that.
Mr Ramsay: Thank you very much for your presentation. You've done a very, very good job. When you look at, as my colleague has said, your cataloguing of the cuts of this government, you would have to conclude, as you have concluded, that this government is targeting vulnerable people. I don't see these cuts as targeting the rich and famous in Ontario at all, but targeting vulnerable people, and through those cuts I'm sure they are going to create more vulnerability in this province. It's shocking when you see it all together, as you have listed it, where those cuts are.
I just want to tell you that in the Liberal caucus we do believe in a revamped system. From what we've seen so far, we like very much the $3-million proposal that the commission has put forward, albeit it is a barebones proposal, but I think it looks sound and we are certainly encouraging the government to pursue that.
We think it's very important that the government pursue that using the principles of coordinating advocacy in this province, and maybe it should be looking at a regional model for that. Quality standards would be another principle that we would impress upon the government to be using with its model. We think training is very important for the people, whether they be volunteers or paid staff, that they be properly trained and, in the end, accountability, so that we as taxpayers and legislators can have confidence that the people are doing the job that the vulnerable people in Ontario deserve. Again, thank you very much.
The Chair: Thank you, Ms Egan and Mr McNeil, for your most interesting presentation.
PETER LILLICO
The Chair: Last but not least, Mr Lillico. You have the written submission and Mr Lillico has agreed he has 10 minutes.
Mr Peter Lillico: And I will keep it to 10 minutes.
I'm not speaking on behalf of any constituency. I'm a lawyer in Peterborough. I have a client base which is largely -- not largely but at least half -- senior citizens. I have knowledge that I have built up over the last year since the Substitute Decisions Act was passed, based upon dealing with hundreds of personal care powers of attorney and powers of attorney for property with my clients and also by giving seminars. I don't pretend to have special expert knowledge.
I'm not speaking on behalf of the most vulnerable people as many of the previous presenters have. I'm speaking on behalf of my clients, who are capable people who wish to put in personal care safety systems or property safety systems in the event that they ever become incapable or vulnerable in that way. In so doing, I have noticed over the last 11 months or so a number of practical problems that have arisen that have prevented the implementation or made more costly or ineffective the implementation of some of the laudable goals of substitute decision-making. I will very briefly review those.
The most important one that I put at the top of my list is preferred assessors. I have just had the advantage of speaking to Trudy Spinks and it may be that my concern here has already been addressed. There is, as you know, under the Substitute Decisions Act a requirement that an assessor be a trained and qualified person. I have many clients who feel far more confident in naming a family member, a friend, somebody they know, who has a better idea as to their capabilities than any assessor, no matter how well trained, can form in a matter of hours.
I should also say as a matter of philosophy -- and I will be speaking practicalities, not philosophy -- the hundreds of ordinary people that I speak to trust their friends, their family and their doctors far more than they trust the government, the courts or, I'm sorry to say, the lawyers. That is where I am coming from, and it's obviously a different perspective from many of the people who have been before you previously.
My concern with the preferred assessors previously was that it restricted it to a class of people who were not -- there was no point in saying, "I want this person to be my preferred assessor." It was simply one of several people, only two or three in Peterborough county, who had been approved to be assessors. There may well be the opportunity under the new legislation for them to provide a method of confirming which will permit them to name their own assessors. I did not read it that way and I discussed it with Trudy Spinks, and she tells me the intention is different. This is 49(1), (2) and (3). The only recommendation I would make there would be to say, please let people choose who it is that will be confirming their capacity or lack of capacity.
It does say that they may choose their method; it might be clearer if it was restated to say "the method and the person who is determining." I read it to mean that it still needed to involve an assessor who was a qualified person, but the method was that the assessor was directed to speak to various people or do various things. That is the most important single point that I would like to make and the one that would most please my clients.
1720
Second is the prohibition of doctors as attorneys for personal care. There's a logical reason to keep out people who provide care for compensation, but I do not believe that applies to doctors. I've given an example in my written material of one person, who is not unusual at all, who trusts her doctor and would like her doctor to be her personal care power of attorney. The doctor would agree to do so, although it is obviously an unusual situation. She can't do it and she's a very unhappy lady because of that. There are many more in that situation. I think that the general rationale, which I do agree with, of excluding paid care providers does not really apply to doctors, who don't really have much of a financial self-interest in personal care matters.
Termination of power of attorney: Now this is the property power of attorney. Many of my clients are aghast to discover that they have done a general continuing power of attorney for property which is strictly to come into effect if, but only if, they lose capacity, and we do specify how that lack of capacity is to be determined. They do that as a safety net for themselves, and then a year or two later may, for other reasons, do a limited power of attorney at a bank for convenience and then perhaps find that they have terminated the general power of attorney, which was never their intention, and they feel that they have protection and they have lost the protection. I believe that a very small legislative change that simply says, "A general continuing power of attorney for property is only terminated by another general continuing power of attorney for property," would be a most appropriate and safe measure.
Another point I had I believe is already addressed by subsection 8(2) of Bill 19, which terminated the power of attorney for property's authority if the public guardian and trustee became involved. I believe that has been addressed by 8(2). I'm a firm believer that, if somebody names somebody to be their power of attorney for property and trusts them, that should not be terminated simply by an administrative function, notwithstanding the fact that it may be relatively simple to reinstate them.
I can tell you as a matter of practice that there are unexpected glitches and time concerns that can arise in that period of time, and I can give you an example, if called upon, where that costs thousands of dollars to a client whose resource stocks were dropping in the interim period between the time that the attorney for property lost authority and regained it under the process.
Lastly, posting security: I am right now dealing with a client who is in the Belleville area. He had appointed his only son, who happens to be working in the United States and is a resident now of North Carolina, as his general continuing attorney. That was terminated by the father's certification of incapacity.
The son then applied through the process to become appointed as the statutory guardian of property in order to continue with father's real estate deals etc and ran into the security problem, which is that there is no discretion under the Substitute Decisions Act for the public guardian and trustee to dispense with the need to post security. That left this family with either a $650 security bond or the alternative of going to court to dispense with the necessity for posting security, neither of which was very attractive. I suggest in the circumstances neither was required when the father, while competent, had already made his decision that this son, regardless of where the son happened to be residing, was the one that he wished to act.
My recommendation there I believe is partly addressed by Bill 19, which does not require the posting of security unless the public guardian and trustee specifically demands it, which is certainly an improvement. I suggest it would be further improved by a provision that the grantor could specifically exclude the opportunity for the public guardian and trustee to make such a demand -- in other words, let the person decide themselves who they trust -- and put the public guardian and trustee in the situation where, if for whatever good and valid reasons they feel that an error has been made, the public guardian and trustee has the onus of applying to court to reinstate the bond. That's eight minutes.
Mr Parker: Mr Chairman, what I was going to suggest is that given the nature of this presentation, which deals with some of the technicalities of the draftsmanship, I was prepared to invite Trudy to respond to some of the points that were made. I'm happy for her to use my time to do that or to do it in private with the deponent at another time.
Mr Lillico: I've dealt with Trudy several times. I'll be happy to talk to her on our own time.
Mr Marchese: He was recommending we use a few moments to allow --
Mr Lillico: I'm easy.
Mr Marchese: That would be fine with us too.
The Chair: Okay. We have four minutes, Ms Spinks.
Mr Marchese: Unless you are unable to because of the cold, which we'll understand. I forgot about her cold.
Ms Trudy Spinks: I really don't have a rebuttal particularly. Some points of view have been raised and the committee might want to consider whether they, the committee members, feel some of the points that are raised are ones that should be taken into consideration.
These things always have a pro and a con, and I guess some of the issues that we did think about when we were drafting have been raised, particularly with respect to the issue of powers of attorney that are terminated by a later power of attorney. That's one where we've had a lot of discussion about the merits of the existing section.
I think Mr Lillico's point is a good one, that it's true people often do make a limited power of attorney for banking purposes, for example, or with a business arrangement, forgetting that they made a general power of attorney as part of their estate plans and inadvertently revoked the earlier general power of attorney.
However, the reason the legislation is as it is now, which says that you can say otherwise when you make the later one that, "No, I want to preserve any existing ones," and if you don't say that then the earlier one automatically falls, is to prevent what we call a pile up of powers of attorney that exist over the same asset because people forget, and then when there's incapacity there are three people standing at the bank wicket fighting over the same asset. That's the rationale, and if that were changed in the way that's been recommended by Mr Lillico -- and I think you may hear that from other presenters as well -- he's got a very good point, but that issue that I mention in terms of the multiple powers of attorney accumulating is the reason it is the way it is. So one has to weigh those two issues, but I guess that's why we're here.
Mr Marchese: What about a response about preferred assessors. He was saying that the way he read it, it talked about the wording of the method as somehow implying that the person, through that wording, would be able to state a preference, and I read it the way he does. Is that the case, or is there some flexibility with the wording with respect to interpreting?
Ms Spinks: That wording was taken from the wording that's in the existing act for powers of attorney for property, if you look at that part that has remained unchanged. Certainly that section of the legislation, as it pertains to property, has always been construed to include -- for example, the most typical method is a letter from my family physician that says I'm incapable. That, to me, brings in the idea of the preferred assessor. Basically you're saying who it is who's going to provide the evidence of your incapacity, and we've always read that section that way. That's why it was written that way for personal care. If the committee feels it's not clear enough, then perhaps they want to recommend that it be clarified.
The Chair: Thank you, Ms Spinks.
Mr Lillico: If I could make one comment there, please.
The Chair: It will be your last.
Mr Lillico: Yes, it will be. It's just simply that people may wish to not use their doctor. I have no problem with what Trudy is saying, but some people want to use their sister, they want to use their brother, they want to use their children. It would be much better if it was clear that they had the ability to name their own confirmers.
The Chair: Thank you, Mr Lillico, for coming from Peterborough. Have a safe journey home. Unless there's some other matter, this hearing is adjourned to 9 am, February 20, room 1.
The committee adjourned at 1731.