CANADIAN COALITION FOR THE PREVENTION OF DEVELOPMENTAL DISABILITIES
HOSPITAL FOR SICK CHILDREN, MEDICAL ADVISORY COMMITTEE
CITIZEN ADVOCACY WINDSOR-ESSEX
CANADIAN MENTAL HEALTH ASSOCIATION, KITCHENER-WATERLOO CHAPTER
CONTENTS
Thursday 20 February 1992
Advocacy Act, 1991, Bill 74, and companion legislation / Loi de 1991 sur l'intervention, projet de loi 74, et les projets de loi qui l'accompagnent
Providence Centre
Margaret Smyth, member, ethics committee
Ian Ferguson
Ontario Advocacy Coalition
Joan Fussell, co-chair
Patrick Worth, co-chair
Orville Endicott, legal adviser
Canadian Coalition for the Prevention of Developmental Disabilities
Graham Chance, chair
Hospital for Sick Children, medical advisory committee
Dr Alan Goldbloom, associate paediatrician-in-chief
Dr Françoise Baylis, bioethicist
Citizen Advocacy Windsor-Essex
Dean LaBute, vice-president
Shirley Jarcaig, managing director
Madeleine Honeyman
Canadian Mental Health Association, Kitchener-Waterloo Chapter
Loren Calder, member
John Martin, member
Ken Parsons, member
Margot Hamblen
STANDING COMMITTEE ON ADMINISTRATION OF JUSTICE
Chair / Président(e): Cooper, Mike (Kitchener-Wilmot ND)
Vice-Chair / Vice-Président(e): Morrow, Mark (Wentworth East/-Est ND)
Carter, Jenny (Peterborough ND)
Chiarelli, Robert (Ottawa West/-Ouest L)
Fletcher, Derek (Guelph ND)
Malkowski, Gary (York East/-Est ND)
Poirier, Jean (Prescott and Russell/Prescott et Russell L)
Sorbara, Gregory S. (York Centre/Centre L)
Sterling, Norman W. (Carleton PC)
Wessenger, Paul (Simcoe Centre/Centre ND)
Wilson, Jim (Simcoe West/-Ouest PC)
Winninger, David (London South/-Sud ND)
Substitution(s) / Membre(s) remplaçant(s):
Cunningham, Dianne E. (London North/-Nord PC) for Mr Sterling
Phillips, Gerry (Scarborough-Agincourt L) for Mr Sorbara
Kwinter, Monte (Wilson Heights L) for Mr Chiarelli
Also taking part / Autres participants et participantes:
Fram, Stephen, Ministry of the Attorney General
Spinks, Trudy, Ministry of Citizenship
Clerk / Greffier: Freedman, Lisa
Staff / Personnel: Swift, Susan, Research Officer, Legislative Research Service
The committee met at 1008 in committee room 1.
ADVOCACY ACT, 1991, AND COMPANION LEGISLATION / LOI DE 1991 SUR L'INTERVENTION ET LES PROJETS DE LOI QUI L'ACCOMPAGNENT
Resuming consideration of Bill 7, An Act to amend the Powers of Attorney Act; Bill 8, An Act respecting Natural Death; Bill 74, An Act respecting the Provision of Advocacy Services to Vulnerable Persons / Projet de loi 74, Loi concernant la prestation de services d'intervenants en faveur des personnes vulnérables; Bill 108, An Act to provide for the making of Decisions on behalf of Adults concerning the Management of their Property and concerning their Personal Care / Projet de loi 108, Loi prévoyant la prise de décisions au nom d'adultes en ce qui concerne la gestion de leurs biens et le soin de leur personne; Bill 109, An Act respecting Consent to Treatment / Projet de loi 109, Loi concernant le consentement au traitement; and Bill 110, An Act to amend certain Statutes of Ontario consequent upon the enactment of the Consent to Treatment Act, 1991 and the Substitute Decisions Act, 1991 / Projet de loi 110, Loi modifiant certaines lois de l'Ontario par suite de l'adoption de la Loi de 1991 sur le consentement au traitement et de la Loi de 1991 sur la prise de décisions au nom d'autrui.
The Chair: I call this meeting of the standing committee on administration of justice to order. Just as a reminder to those still using the pink schedule, our 9:30 has now moved into the 11:30 slot.
PROVIDENCE CENTRE
The Chair: I would like to call forward our first presenters now, from Providence Centre. Good morning. I would like to remind you that you have a half-hour for your presentation. The committee would appreciate it if you would hold your remarks to about 15 minutes to allow time for questions and comments. As soon as you are comfortable, please identify yourself for the record and then proceed.
Ms Smyth: My name is Margaret Smyth. I am a member of the ethics committee of Providence Centre as a representative of the residents' council. This is a submission to provincial committee on the administration of justice regarding the Advocacy Act, Bill 74; the Substitute Decisions Act, Bill 108; the Consent to Treatment Act, Bill 109, and the Consent and Capacity Statute Law Amendment Act, Bill 110. Dr Ferguson and I have had several discussions over the last couple of weeks regarding these bills and what I am presenting is my own version.
I have several impressions regarding these acts. My first impression was that the bills were hard to follow, required a lot of backtracking and re-reading and were often repetitive. I ended up with more questions than answers.
An example of repetition lies in Bill 74, sections 1 and 7. Clauses 1(c), (d), (e) and (f), which purport to be the purposes of this act, seem more appropriately to belong to section 7, which merely states, "The commission shall,"
As a "vulnerable person," as in section 2, by virtue of lacking physical ability to act on my own wishes, I see some merit in one of the alleged purposes of the act spelled out in subclause 1(b)(ii) and clause 7(1)(c), but it does not seem to be further elaborated upon, except for clause 36(a), which allows the commission to make regulations regarding advocacy for change at the political, legal, social, economic and institutional levels. This is a lobbying function.
Subsection 6(2): It hardly seems possible to divide the 12 members of the commission among all -- how many? -- regions of the province and be representative of all the categories named.
Clause 7(1)(a): Other than by a public relations campaign, I do not know how the commission can "promote respect for," naming individuals. I would find this more credible if the words "promote" and "for" were deleted, leaving the word "respect."
Subsection 3(2) and other references: I have not found a definition for "community development" or "community development strategies," clause 7(1)(e), and I am quite in the dark. I do not know what these are.
Section 14 re appointments to appointments advisory committee, recommendations to be made by relevant category: I personally belong to four categories. Incidentally I do not see that age 65 alone should be a qualifying factor, paragraph 15(1)3.
Bill 108:
I have not studied this bill sufficiently to grasp the full import, but I do find the terminology confusing. The number of possible people involved is daunting. I will list some: power of attorney for property, statutory or court-appointed guardian of property, public guardian and trustee as guardian of property temporarily, guardians of property, guardian under continuing power of attorney, power of attorney for personal care, court-appointed guardian of the person, court-ordered full guardianship, court-ordered partial guardianshp, advocate, representative, agent and counsel. The proper place of all these people in administering the act is not clear.
I have some observations.
Clause 3(1)(b): If the capacity of a person is in issue, how can that person have capacity to retain and instruct counsel?
Paragraph 10(2)4 limits who can act as a witness. In a chronic care facility, the possibility of finding two witnesses who are willing to make a written statement regarding capability of a person, subsection 10(3), is in doubt.
Subsection 16(5) seems to assume that there is a pool of advocates waiting to be called. Under clause 16(5)(b) I am not sure if there is a follow-up if statutory guardianship is refused. The same applies under subsection 20(5) when guardianship is terminated.
Subsection 17(1): It took several readings for me to understand that the attorney may apply to replace the public guardian and trustee. The wording is misleading and it could be taken that the attorney is applying to be replaced by the public guardian and trustee.
Subsections 22(1) and (2): There are a court-appointed guardian of property and a statutory guardian. Which takes precedence?
Subsection 27(5): "An advocate shall meet with the person before the hearing." This is the first mention of a hearing.
Bill 109:
Subsection 6(2): I find it difficult to envisage the situation where a person is capable with respect to some treatment and incapable with respect to others. The concept smacks of authoritarianism.
Subsection 10(3): It does not put much responsibility on the advocate, who could brush off any failure to explain by saying, "I did my best."
Section 20: An incapable person can apply to the Consent and Capacity Review Board to appoint a representative to give or refuse consent to treatment. In the outside world, I would call this person an advocate, but that word has been pre-empted and given a very narrow definition by the Advocacy Commission.
I cannot help feeling that the intent of the bill is to deny vulnerable persons the right to refuse treatment. The health practitioner has an inordinate amount of power with respect to the determination of capacity.
In summary, I can see a need for regulations concerning Bills 108 and 109 but fail to see what Bill 74 accomplishes except to set up a bureaucracy. The advocate has no power since the service can be refused and the only function is to contact persons who have been declared incapable and tell them their rights, which they have already been told by the health practitioner, yet they are given other extraordinary rights.
It is not always clear to me how the bills tie together. Is it always a requirement for an assessor or health practitioner to call an advocate, regardless of involvement of attorneys or guardians, when incapacity is determined? What a lot of red tape.
Overall, the bills seem to subordinate the rights of individuals and their support groups, including families, relative to a bureaucratic process that can only hope to benefit a few vulnerable persons who are truly alone. In the process, it seems to be quite intrusive in the rights it gives to advocates, with rights of entry and rights to confidential documents. I am left with a question, does the advocate do anything the health practitioner has not already done? And whose purpose is served, the vulnerable person or the advocate? This subordination of families does not dovetail well with the long-term care proposals being put forward by your government, where families will be expected to provide more care in the future.
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Mr Phillips: I appreciate your presentation. Just in terms of how this might actually impact on you, have you and your group discussed what the practical implications of these three bills might be on yourself and the group you are representing?
Ms Smyth: The main thing, it seems to me, is that advocates are given a position that is totally unnecessary, in most cases to the detriment of families.
Mr Phillips: Have you seen, on the other hand, examples where an individual would have benefited had these bills been passed? Have you seen cases where this could, on hindsight, have been a good thing, to have these bills in place?
Ms Smyth: Personally I have not. I am sure there must be some vulnerable people in the community who could benefit.
Dr Ferguson: Perhaps I can answer that a little more, just because of my experience. There are sections in the act that I think would benefit those of us who work in the community in so far as I can see some benefit for people we see whom we might consider vulnerable and there is no avenue for providing them with any assistance.
The difficulty with the current legislation is that the only avenue we can use sometimes to get somebody help is under the Mental Health Act, which I think is the wrong act to have to resort to all the time when we are often-times talking about somebody who has dementia and a failure to thrive, who is becoming progressively more ill physically and there is very little you can do except under the provisions of the Mental Health Act.
Under Bill 108, say where you can make application for guardianship, there is an opportunity to provide some help by another avenue, under other legislation, that does not have the stigma that is attached to the Mental Health Act, but also it allows other people to participate in the decision-making process. I think that is a benefit.
One of the difficulties in the act -- Marg and I have talked about this -- and one thing I worry about is that after 10 years in the community I will be called upon as an expert to assist other health care providers in their decision-making and to evaluate somebody. I do not know what the impact of this act will be under the terms of Bill 108, because right now I tend to be fairly libertarian in my viewpoint and I do not admit people who want to stay at home, even when they may be at some risk. As an individual practitioner I will probably allow a greater degree of risk than some other people.
Under the new legislation, I can get bypassed entirely. I might not now be called upon to see a vulnerable person in the community because health care providers, other people and other disciplines and families and friends do not like me because I do not admit people to hospital, because I do not override their wish to stay at home. I can get bypassed totally by this legislation. I would argue that a peripheral and remote guardian will assume a social standard of acceptable behaviour and acceptable living conditions that are probably higher than the standard I will accept, or that I can live with and that the person, I think, can live with.
My concern is that the consequence of Bill 108 may be that you end up institutionalizing more people or hospitalizing more people because there may not be the level of expertise required to do evaluations, and a kind of acceptable social value may be the standard that becomes used. None of my patients -- I guess that is an exaggeration. Let's take the more severely demented patients I see in the community. They do not fit the standard of personal care that is defined in the terms of Bill 108. They are still out there, but they do not fit the standard. They would not qualify to have an understanding about any of those issues regarding dress, living arrangements etc. They do not fit and I do not know what that would mean. Once they got declared incapable, what would that mean to them?
It really all depends, I think, on the wisdom and discretion of people acting under the terms of the act. If good people are out there attempting to do good things and have great respect for other people, it will not be a problem. If you get people whose agenda is to rescue other people, then I think there will be a tremendous intrusion on privacy and potentially we might actually be harming people.
Mr Winninger: Thank you for your presentation. There are a few points you make in regard to Bill 108 that I think might be addressed. First of all, you questioned, if the capacity of a person in an issue, how can that person have capacity to retain and instruct counsel. There is always a presumption that a person has the capacity to retain and instruct counsel, even in the case of the criminally insane or people who are certified. It is just a right that people are entitled to no matter what their capacity is. To the extent that a lawyer can obtain instructions from that individual, then that lawyer can represent that individual.
Another point you raised was in regard to whether there is follow-up if statutory guardianship is refused or terminated. This is under guardianship of property in the bill. I would just note that section 19 provides that if a statutory guardian of property ceases to act as such, for any reason, the public guardian and trustee may act as the incapable person's statutory guardian until a new application to the public guardian and trustee is made, or an application to the court under section 22. I think section 19 addresses your concerns there.
I am not so sure what your concern was about section 22. It says: "There are a court-appointed guardian of property and a statutory guardian. Which takes precedence? It is possible, as you observed, for someone to have one guardian to administer property and another guardian of the person. That is certainly open, because in some cases a guardian may have more expertise when it comes to dealing with property and in other cases a guardian may be better able to deal with personal needs. So it may be appropriate in some cases that the guardians be different for property and personal care.
Ms Smyth: The question arose, really, because of my lack of understanding of all these different terminologies. I just could not sort it out.
Mr Winninger: I agree that the language is complex. Because these are complex issues, the language sometimes needs to be complex as well to deal with all the contingencies.
Ms Carter: I am really sorry that you view the Advocacy Act in the way you do. First of all, to answer some of your separate little points, given the size limit of the commission, I think our provisions for it to represent the kind of people it is going to be serving are very good. It is not going to be a powerful bureaucracy; it is going to be at arm's length from government. It is under the Ministry of Citizenship, which is not a ministry that delivers services directly to the community, and it will even be independent within that.
The over-65s have told us they think they should have more rather than less representation, because they have a lot to offer, but that is a matter of opinion. I do not think we could really define all the community programs that might come under this. I do not see how we could do that.
But as I say, I really feel that you have misunderstood it completely. First of all, it is not for people who are totally incapable; it is for the vulnerable, who may be vulnerable because of the situation in which they find themselves. It is only to listen to their wishes. That is the sole function of the advocate, to meet with the person, to find out what he wants and to try and carry out those wishes and if he find that a lot of people are having the same class of problems, to try and change things in the community that will tend to overcome those problems.
Where family and friends are on the person's side, as is very often the case, there is no problem, that person would not need an advocate. But there are people who are either isolated or in some cases, who actually have problems with their families or even with a medical practitioner. It does happen. If you can, as it were, put yourself in that position, I wonder whether you would not feel that it is right that somebody should be able to come and ask you what your wishes were, and to act on them. I wonder if you have any comments on that.
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Ms Smyth: It really was not clear to me that the advocate did anything, except repeat what had already been told to the person who has been deemed incapable.
Ms Carter: As I say, not incapable, but in a position where he is vulnerable, and although the advocate may be telling the person what his rights are in this situation -- as I say, the primary function is to find out what that person wants. Not necessarily what is in his best interests, because when you are an adult, you have wishes that may or may not be considered by other people to be in your best interests, and yet you feel you should have the ability to have those wishes carried out. I just leave that with you.
Mr Wessenger: I wondered if you might explain to me your concerns with respect to subsection 6(2) of Bill 109. If I might explain why that section is in there, it has been indicated to us by medical practitioners that they would consider many of their patients perhaps capable of consenting to a medical treatment such as stitching up a cut or fixing a broken arm, but when it came to a very complex situation of weighing risk and benefit, say of something like chemotherapy, they would not consider the person capable. The purpose of the provision is to allow people to have more power to exercise decisions rather than to have less power. Perhaps you could explain your concern in regard to that.
Ms Smyth: It seems to me it is rather patronizing for a doctor to assume, "Even though I have explained this to you, I know you do not understand, so I am saying that I will make the decision for you."
Mr Wessenger: It is really your concern about the health practitioner being too patronizing, assuming a person does not understand and making the assumption that he would have the better judgement. But of course in that instance the person has the ability to have an advocate come in and advise him of his rights to challenge the --
Ms Smyth: But does the advocate have any power as against the -- I think if an advocate is arguing with a doctor, the doctor would probably always win.
Mr Wessenger: No, let me explain. The advocate has a very limited role with respect to the Consent to Treatment Act. The advocate only has the role of advising a person of his rights to challenge the finding of incapacity. I think this is where the confusion is in respect to the advocacy. In other areas, the advocate of course has probably a much broader role. In respect to consent to treatment, it is a very limited role only.
Mr Malkowski: Thank you for your presentation. Your concerns were useful in helping us understand some of the problems. You were saying your concern was that the legislation gives the advocate more power than the family. Could you tell me what your concerns are about the advocate and the family, and maybe we could see where the misunderstandings are. Could you explain that for me?
Ms Smyth: It seemed to me that the health practitioner does not have any choice when he has declared a person incapable, except to call for an advocate. To me the first people who should be involved are the families.
Mr Malkowski: Would you agree then that the advocate perhaps could help the people who have no families or relatives and that the legislation would help them? The people who are vulnerable and have no families would be in need of someone.
Ms Smyth: I would agree with that.
ONTARIO ADVOCACY COALITION
The Chair: I would like to call forward our next presenters from the Ontario Advocacy Coalition. This is just a reminder that you will have half an hour for your presentation. The committee would appreciate it if you would hold your remarks to about 15 minutes to allow time for questions and comments. As soon as you are comfortable, could you please identify yourself and then proceed.
Ms Fussell: Thank you for your welcome. My name is Joan Fussell and I am the co-chair of the Ontario Advocacy Coalition. Patrick Worth is the other co-chair. He is also past-president of People First of Ontario. I know you heard from Patrick on behalf of People First on Tuesday. Orville Endicott is the legal adviser to the association for community living, both the national and provincial organizations, and also serves as the coordinator of the Ontario Advocacy Coalition. At the back of our brief you will find a list of the 34 organizations that belong to this coalition.
Having sat in on many of the sessions over the past 10 days and in December, we have developed feelings of great sympathy for you because of the difficulty of the task you have been assigned in reviewing this legislation. In addition to the complexity of the subject matter of the bills, you are also hearing widely divergent points of view from the public interest groups and individuals who are appearing before you. If it is any consolation, the magnitude of the demands placed upon you is a measure of how vitally important this legislation is for thousands upon thousands of citizens of this province.
Some time ago, we provided each of you with copies of our brief, which proposes more than 40 amendments to the four government bills. Obviously we will not be able to discuss all those proposed amendments with you today, but we hope our suggestions may be helpful to you when you begin the clause-by-clause study of the bills after hearing the public submissions. I know several of our member groups such as People First, the Ontario Association for Community Living, the Advocacy Resource Centre for the Handicapped and the Psychiatric Patient Advocate Office, all of whom made presentations to you earlier, are counting on you to turn to the coalition's brief when you come to consider the possible amendments to the legislation. It deals with many particular points which these organizations would otherwise have had to make independently, and it contains the actual wording of proposed amendments that they, among others, have helped us to prepare.
We have proposed so many amendments because we firmly believe advocacy is crucial to the development of justice and respect for vulnerable people. We endorse the central concepts and intentions of the advocacy bill and we spent a great deal of time considering how it and the other three bills can be improved. We assume that is also your objective, whichever side of the table you are sitting on. We are really counting on you to help improve these bills but to proceed with them all expeditiously.
All three political parties are not only on the record as favouring social advocacy, but have contributed over the past five years and more to the development of the idea and have helped to bring us to where we are today. We acknowledge a particular debt of gratitude to the late Father Sean O'Sullivan, who undertook the Review of Advocacy for Vulnerable Adults in 1986 and 1987 with great commitment and enthusiasm. We believe it was because he captured the vision of what advocacy can mean for people that his report has gathered less dust than any other such document we know of.
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As you heard the other day, Pat Worth became a close friend of Sean O'Sullivan during that review process, and I would like to invite him now to tell you a few of the things he learned about advocacy through his participation in the review and in the work of the coalition since People First helped to establish it five years ago.
Mr Worth: We in People First usually refer to ourselves as "self-advocates." If you are going to be labelled, it might as well be one you choose for yourself and one that expresses what you can do about your situation rather than one that says you have a disability. What it means to us is that we can speak for ourselves when other people deny us our rights. It also means we speak up for one another. It does not mean we do not sometimes need people who have never been labelled with a disability to support us and advocate on our behalf.
To those of us who have been involved in advocacy for a long time, the meaning of the word is not vague. You have to realize that Sean O'Sullivan did not invent advocacy. It has been around for a long time. Sean O'Sullivan was able to recognize it when he saw it, so it does have a pretty clear meaning.
Let me remind you of what advocates do. Before getting into the details, it is important to consider the broad picture. An advocate is someone who is always your ally. The advocate respects the vulnerable person and for that reason always tries to do what he or she knows that person wants. The advocate's actions consist chiefly of being a voice for the vulnerable person. The advocate will speak to the vulnerable person to provide information and clarification, but he or she will also speak to other people so they will know what the person wants and is entitled to.
What advocates do to help people can be expressed under four headings: Advocates defend the rights of the person; advocates help people get appropriate services if they require them; advocates support people so they can make decisions for themselves; advocates assist people to be connected with other people in the community who will value and support them.
People need advocates to do these things because they often cannot get people to listen to them or they do not have enough information to know whom to talk to or what they should say. Without support, they do not have enough confidence in their own abilities. They are powerless to change the things that are keeping them in bad situations.
The kind of support an advocate can give helps them to develop self-confidence. Advocates will not do things for people in a way that makes them think they do not have to do anything for themselves. Advocacy empowers people and gives them a more equal footing with those who have been robbing them of their dignity. The reason vulnerable people are vulnerable is that they are not recognized as having equal value as citizens along with everybody else.
One of the things Bill 74 does not make clear enough is that advocates must act independently. Their only commitment is to the vulnerable person on whose behalf they act. The legislation is quite strong in stating that the Advocacy Commission will be independent of the government and that it will be made up of people who have gained the confidence of the various groups of seniors and persons with disabilities across the province. But it does not say anywhere that you cannot be an advocate and at the same time work for an agency that provides other services to people with disabilities. We think it should state that clearly.
The Advocacy Act follows Sean O'Sullivan's recommendation that there should be both paid and volunteer advocates. He called it the shared model of advocacy. Ideally every advocate would be a volunteer. A volunteer is an advocate just because he or she is strongly committed to people who are always at a disadvantage because they have a disability. That willingness to be committed to the other person as though his or her cause were one's own is a necessary ingredient of advocacy. We in the coalition know there are a lot of people in this province who are willing to do that without being paid. The need for advocacy is so great, however, that we also know we will need to have advocates who earn their living as advocates.
I said earlier that advocates will always try to follow the instructions they receive from the person who needs advocacy. This is an important principle, but it must not mean that advocacy will not be available to people whose disabilities are so severe that they cannot tell an advocate what their wishes are. These are the people who are the most vulnerable of all, and it is essential that they have access to advocates in just as full a sense as they could if they were able to give instructions to an advocate.
It is my personal belief that once a strong foundation of a relationship is being built between the vulnerable person and the advocate, the advocate comes to know the wishes and dreams of the vulnerable individual and can understand them.
If I could add to this, I know some people think that the Advocacy Act came into focus because professionals wanted it and because it seems like professionals are speaking about it. But it really came through the hearts of people who are vulnerable because of this system. We are the people who are getting tired of the system betraying us or the system locking us up and hurting us and separating us from our friends and families and society in general. We are the people who were really screaming for an independent advocacy system that we can own and that we can nourish so that we can build a foundation of advocacy. We think it is important that you give us that chance.
Mr Endicott: It falls to me, and after Patrick's words it is rather anti-climactic, but we did want to say a few things about the rest of the government's legislative package. We are after all an advocacy coalition. As Patrick said, advocacy empowers people. Substitute decision-making, on the other hand, unless it is arranged in advance by the individual concerned, essentially disempowers people.
One of the coalition's recommendations, which you will find in our brief, is that Bill 108 should be amended to include criteria by which to determine whether an individual has the capacity to give a power of attorney for personal care. The bill sets out such criteria only in relation to a power of attorney for property decisions. The coalition thinks the test for whether a person can give a power of attorney for personal care decisions should be based on a determination of the person's actual trust and confidence in the person or persons who will exercise the power. It should not be a test based on whether the individual could, at the time the power is granted, make all personal care decisions for himself or herself. Where the individual's trust in those who support him or her is real, warranted and demonstrable, the law ought to make it possible for them to be his or her attorneys for personal care.
We do not have time to go over the coalition's other particular recommendations with respect to Bills 108, 109 and 110, but I do want to stress that there are a lot of them. They are found in our brief together with specific wording that we believe will improve all the bills. They are the joint work of a large number of organizations representing people in many different areas of disability and seniors. They are counting on you to find them in our brief, so they have not been as detailed in their own.
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One final recommendation must be brought to your attention. The commencement provisions of Bills 108, 109 and 110 all say that those acts will come into force on the same day as the Advocacy Act. We have suggested an amendment that would create a two-year delay after the Advocacy Act is proclaimed into law before the other three come into effect. There are two reasons for making this recommendation.
First, as you are aware, the Substitute Decisions Act and the Consent to Treatment Act will create a number of situations in which a person who is deemed incapable of personal decision-making is to be visited by an advocate. We endorse this as a useful safeguard to prevent unnecessary guardianship or other substitute decision-making, but we also anticipate that it will exert a very considerable demand on the resources of the Advocacy Commission. We want the commission to have a chance to become established before having to meet those demands.
The second reason for phasing in the other statutes at a later date is that we believe advocacy will be such a significant new factor in dealing with the issues of diminished capacity for self-determination on the part of people who have disabilities that new statute law in relation to those issues should be open to amendments to take into account those new realities before coming into effect.
Those are our submissions. We look forward to your questions.
Mr Poirier: You have been here for a lot of the presentations. You have come to see me and I have told you, and I repeat it publicly, that I support the principle you are pushing for. Legislators, whether in government or in opposition, have the same concern, that the bills you want to see brought forward and put into reality solve more problems than add to the list of problems. We know -- especially when you have been here for seven years, like me -- that between what we start out with as an intention and sometimes even after public hearings, some horrible things can happen. You find out they complicate some aspects more than they solve.
Some of the concerns are people living with schizophrenia, for example, and some of the other testimonies where they want the Advocacy Act to empower the individual as opposed to the advocate, because the person who is supposed to be served is the person in need as opposed to the advocate.
If this is supposed to empower the person, I would like you to be able to respond to some of the criticisms you have heard and tell us how we can accommodate some of those people who are concerned about their survival, which they support in principle, but who are afraid. For example, when someone like the young person we had yesterday wants to be able to write a contract that says, "Whenever I go off my medication for schizophrenia, if I write a contract that says to bring me in there and make sure that I am given my medication no matter what I say, because what I say when I don't take my medication is not the truth and is not what I really want to say," how do you deal with that? Every coin has two sides, friends, and as we have seen, some coins are really weird. They have five sides.
Mr Endicott: Joan looks at me. I guess one of my responses would be that this coalition actually was responsible for a clause in Bill 74, the Advocacy Act, which requires the Advocacy Commission to include in its functions the enhancement, acknowledgement and encouragement of families. We know that families are the primary resource for people. That is the way it always should be. We do not anticipate for a moment that advocacy will change that.
As an advocate myself, not in the area of psychiatric disability but intellectual disability, I have found that nearly always when advocacy is required it is parents who come to us and say, "Can you help us?" Advocates do have resources that are not available to families: resources of information and resources of knowledge of where the pressure points are that need to be pressed in the system. We think the fear that an advocate will diminish the legitimate role of families is unwarranted, based on experience.
Mr Poirier: A lot of the people with schizophrenia or Alzheimer's come forward and tell us exactly the opposite. They tell about real-life situations where they have really been challenged, opposed, sidelined or whatever by so-called advocates. Hopefully with the commission and with the new independent advocates there will be more control on people doing this. I hope so. My father has Alzheimer's. I sure would not want an advocate to come between my father and me and say: "We know what's best for your father. You're stepping on your own father's toes or your own father's rights." I would really be upset. Believe me, I could share that.
We are trying to make sure that the intent of this legislation, when it translates into reality, matches exactly the intent. That is the only reason we are raising questions, not to hinder it but to make sure you do not come back to us afterwards. The problem is that once you come out with a bill, if there are some bugs in it, it is not like summer camp; you cannot call your mother and say, "Take me back," because it takes more than 3.46 days to correct the inadequacies in a bill if it comes out with some bugs in it. That is why we are worried, because if the bugs are there and the bill comes out too quickly, it is going to take a heck of a long while.
I also say this to my friends in government: Now that we know your priority list says this should be the number eight priority, I would like to be a fly on the wall in the Treasurer's office when somebody comes forward -- I do not know who will come forward -- and says, "We expect this to be the financial bill, the cost of this." I think Floyd is really going to have a pink bird -- flamingo -- right there on the spot, and he is going to say: "Drop dead. There's no way I can afford this now." That is what I am afraid of. I told that to you when you came to see me. I said publicly, with all good intentions, we all want to see something happen. But I am really afraid of that. That is why maybe what is going to come out is not what we think may come out. Make sure you look at the opposition of people. I have invited you before. Let us know what you think the objections are and respond to them because that is important for us to know.
Ms Fussell: I would like to point out to you, Mr Poirier, that often people who are within the service-providing systems profess to be advocates for their patients, and many to a great extent are. However, they are also part of the system that is providing health and social services. This advocacy system is a completely different concept in that it will be independent of the health and social service systems. It will be designed by vulnerable people for vulnerable people. An advocate under the advocacy system will be responsible to speak only for that particular vulnerable person who is his or her client. It is a very different approach from what you have heard of as advocacy in the past when it is really coming from someone who is part of the delivery system.
Ms Carter: Thank you for your very constructive contribution to this issue. Patrick Worth has suggested that those who are unable to give instructions should nevertheless be able to have an advocate, and that is foreseen in clause 36(d) of Bill 74. I understand the view that sometimes if a person who appears to be quite incapable is close enough to another person, he can to some degree be understood. Nevertheless, the key idea of the Advocacy Act is that it is the client who is directing that the job of the advocate is to express the wishes of the client. In suggesting that, the full range of advocacy service should be supplied to those who are unable to instruct an advocate. Are we not endangering this principle? Are there not some problems there?
Ms Fussell: We believe the principle remains intact that, generally speaking, advocates will receive their direction only from their clients. However, if there is no exception ever made to that rule, then the most vulnerable people among us will be the ones who do not have advocates. You are quite right in that it often requires an astute advocate to understand what the instructions are that a person can make to an advocate. There still will be exceptions, however, where a person perhaps cannot give clear instructions, even to an astute advocate. On the other hand, if those people are not provided with advocacy services they are most likely to be subjected to the abuses and neglect we hear about all too often in this province; people, for instance, who are in less well-regulated institutions or boarding homes. It is just a gap that is too important to allow to go unfilled by advocates under this act. Perhaps Orville or Pat have something to add to that.
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Mr Endicott: I appreciated Pat's remarks about the advocate, with effort, coming to understand the individual's wishes. I think that is a very important principle. If there is going to be any reference to a person being incapable of instructing an advocate, I would rather that be reworded that the advocate has not been able to ascertain what the individual's instructions were. It is going to be difficult for an advocate to develop that rapport because admittedly he or she will not necessarily have all the time in the world to develop it before some representations have to be made. I think there has to be a recognition that some wants and needs can be taken as expressed.
Patrick talked about the role of advocates in defending people's rights. The advocate can know that person has rights. He talked about services the advocate can help people have access to, and if the person is in that degree of disability there obviously will be a requirement for services the advocate may have some knowledge of that other people are unaware of, that way of understanding the person's wishes even without getting them in words.
Mr Malkowski: Thank you for your presentation. It was certainly very impressive. That is as usual, I should add. I just want to recognize at this point your group's contribution, the hard work you have done and your commitment in promoting the concept of advocacy and the concept of an advocacy system. I know this is not a new idea to you. It is something you have worked on for many years.
The three parties and past governments, Liberal, Progressive Conservatives and ourselves, have all spoken in support of the principle of advocacy. I know that you, Patrick, for example, became friends with Father O'Sullivan. The O'Sullivan report is something you have all spoken in support of. It talks of the need for this type of advocacy system. At this point I would like to say straight out that my ministry and my minister, Elaine Ziemba, have come up very clearly from the very beginning in saying that advocacy has to be a priority of this government. We will go ahead with this concept. I would like to say that you have certainly become our friends and that we are going to begin this process of empowerment and working with vulnerable people. This is not where things end; this is in fact just the beginning.
Mr Winninger: I have a brief response to Orville's points about Bill 108? I think it would be instructive to attempt to spell out some criteria for capacity to appoint an attorney for personal care as we have done in section 8 with attorneys for property. I might get in trouble with Mr Fram for saying that, since he just came in.
In addition, though, I would have some concern were the implementation of Bills 108 and 109 to be delayed for two years as you suggest, because I think advocates may have a very onerous burden on them when they --
The Chair: Mr Winninger, excuse me, but I advised everybody a couple of days ago. Could you please get close to the microphones? There is trouble with Hansard picking it up and there is trouble because the people at the back of the room cannot hear.
Mr Winninger: It may place an unreasonable burden on advocates when they cannot point the vulnerable individuals to all the necessary directions that might involve the kind of guardianship for personal care or attorney for personal care provision that they would enjoy under Bill 108 and the advance directives for consent to medical treatment that they might enjoy under Bill 109. I wonder if you could respond to my concern in that regard.
Mr Endicott: Certainly the advance directives provision is something the coalition and its member groups are very supportive of, and in a sense our recommendation to delay the implementation of the Substitute Decisions Act was subject to some concern that there would be people who could take advantage of that now, for example, people with AIDS, and why make them wait? AIDS Action Now is a member of our coalition, and we asked it specifically, "Do you realize you are sacrificing something your members may wish to avail themselves of?" In the end, they concurred that these issues are too important and that the Advocacy Act has to have priority because it deals with empowerment.
Personally I think there may be things like the continuing powers of attorney that possibly could be implemented earlier, severed from the rest of Bill 108, because they really are measures of empowerment. Our concern is that so much of the other two bills are really measures of disempowerment, removing rights from people and vesting them in someone else. We feel there may be better ways of dealing with those issues than are presently incorporated in those statutes.
Mr Winninger: I do not necessarily agree with you, but at least I know where you are coming from.
Mr Phillips: Just quickly, the Advocacy Act may be very timely, because just as it is coming along, perhaps for the first time ever we are looking at, I gather, contracting services in the province, with less money being available for the services that you will be advocating. How big a role do you see the Advocacy Commission playing in advocating with the provincial government? Will that be a significant role, in your view, for adequate funding for the services?
Ms Fussell: We think there will be a significant role for the advocacy system to do systemic advocacy. It is inevitable that when case advocates are present in institutions and know the conditions under which people are living and the problems people are having with the systems, they will try to put on some kind of pressure to reform the systems. It is not necessarily, in our view, going to mean that the systems will cost more than they do at the present time. It may mean there will be some pressure to redirect some funding in health care and social services to be more in tune with what people really need.
Mr Fletcher: Just one quick question: On the implementation, you have a two-year gap. Why two years? Is that an arbitrary number?
Mr Endicott: I do not think it is arbitrary. It was not one that we calculated over a long period of time. I think it is based on the knowledge that it is important that those other matters be dealt with legislatively and that we would not want to be seen as wanting to delay some action. We feel that certainly it will take that long for the Advocacy Commission to really be prepared to respond to the demands that are made and that during that period the advocacy system will create such a change -- it ought to create such a change -- in the situations vulnerable people face that the answers to their decision-making problems may be very different from those anticipated now.
Mr Fletcher: I tend to agree with you.
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CANADIAN COALITION FOR THE PREVENTION OF DEVELOPMENTAL DISABILITIES
The Chair: I would like to call forward our next presenter, Dr Graham Chance. Good morning. I just remind that you will be given half an hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 minutes to allow time for questions and comments. As soon as you are comfortable, could you please identify yourself for the record and then proceed.
Dr Chance: Thank you, Mr Chairman. I have arrived somewhat breathless on a late Via train from London.
My name is Graham Chance. I am a professor in the department of paediatrics at the University of Western Ontario. I am a member of the Canadian Paediatric Society bioethics committee and a consultant to the foetus and newborn committee of the Canadian Paediatric Society, but I am appearing here on behalf of the Canadian Coalition for the Prevention of Developmental Disabilities, a group I have chaired for the last 12 years.
The composition of the coalition is that it represents both professional bodies and lay bodies concerned with children's health, particularly the wellbeing of children and the prevention of disabilities, recognizing three levels of prevention, not simply primary prevention, and recognizing the fact that much prevention is possible through the Advocacy Act.
The concern of the coalition is primarily with section 15 of Bill 109, and I understand other people have been represented who also have concerns with section 15 of Bill 109 and the explanatory notes. In particular, as a coalition concerned with children's health, obviously the concern is in regard to research with children.
As I explained, the coalition concerns itself with children, disabled or otherwise, that they should in fact be given the optimal opportunity to reach their full potential. As worded at present, the ambiguity of section 15 is of concern to the coalition, recognizing almost certainly that the intent was good, but the ambiguity of the statements in section 15 could lead to interpretation that the bill prohibits research. I recognize that this has been discussed before with the committee, but I feel a continued discussion of this section is very important to children as a group that has the inability to give primary consent and that has been, in the majority -- until they are 16 in this act -- unable even to write in advance, to seek consent, to state their intended views.
The concern of the coalition is primarily then in relation to the first part of section 15, "A procedure whose primary purpose is research." As I said, the presumption is that there is intent for a neutral legal position but the words, taken in isolation, could in fact be interpreted as "prohibit" rather than "does not authorize."
The reason for these concerns relate to past experience in relation to research and children, and I am referring particularly to the reaction that occurred after the Eve decision of the Supreme Court of Canada. You may recall the Eve decision was concerned with a 25-year-old incompetent adult woman whose mother wanted to protect her against pregnancy and for whom a court decided hysterectomy would be the appropriate approach. The Supreme Court of Canada rightly ruled against that as an appropriate approach to this particular situation. Throughout his judgement, Mr Justice La Forest was concerned essentially with this woman's capacity to reproduce. However, the Supreme Court judgement became widely interpreted, much more widely interpreted than one suspects was originally intended, and was eventually to include children's research and non-therapeutic research in children.
The submission I have supplied has given several appendices. Appendix 2 is an abstract taken from the Medical Research Council of Canada guidelines of 1987. If I can direct you to that appendix, in the fourth paragraph it says, "The conditions under which children can volunteer for non-therapeutic interventions of no benefit to them are contentious." In a reference at the bottom of the page it refers to "Re Eve 1986."
The problem is that children, being unable to consent, were to be precluded from therapeutic research but especially from non-therapeutic research, and advances that were open to adults and other members of society were to be precluded from children. The consequence of that, of course, is that we have an unethical situation in regard to a segment of the population.
Lawyers interpreted the Eve decision very rigidly. I have simply abstracted for your interest three papers written by Mr Gilbert Sharpe, by Professor Dickens and by Professor Solomon from the University of Western Ontario. Gilbert Sharpe's paper, on the second page in the last paragraph, recognizes, "There are obvious implications for other non-therapeutic interventions, such as medical research, the removal of tissue such as bone marrow from a healthy child to help a sick one, and so on."
I have two pages from Professor Dickens's article, appendix 3. Professor Dickens stated, "Problematic procedures that courts may be cautious to approve that parents may authorize include male circumcision, vaccination when not legally required, and children's involvement in non-therapeutic medical research." I mention the first not to say that it is a vitally important act on the male child but simply to point out that some acts can lead to rather ludicrous results.
He goes on in the second paragraph on page 116 to state, "Children's involvement in non-therapeutic medical research, for instance, by separate blood sampling or a more invasive or risky procedure, may be impermissible."
Finally, in the paper by Professor Solomon, on the second page, the third paragraph, it says, "The current law appears to prohibit all non-therapeutic interventions based on substitute consent, regardless of how trivial the intrusion may be or how great the benefits."
Having seen then what transpired following the Eve decision and what thoughtful academic lawyers and thoughtful physicians concluded in regard to therapeutic and non-therapeutic research, the coalition was concerned to read section 15, particularly paragraph 1, referring to research. Being concerned that the ambiguity of the statement in isolation -- I stress "in isolation," because if one looks at the whole act through and through, perhaps it is not so ambiguous -- as occurred with the Eve decision, it could prevent valuable procedures which are necessary for children's health and wellbeing.
Examples abound in the past where therapeutic procedures were brought in without adequate research. A particular concern we had at the time we were considering the Medical Research Council guidelines was the recognition of the continued need to accept therapeutic privilege in relation to innovative procedures. Those guidelines condoned -- and one would agree that innovative procedures should be available to children -- the actions which were innovative but precluded adequate research to prove that those, though innovative, were in fact effective. If it is impossible to undertake adequate research to prove that procedures are effective, then children are in danger of being subjected to procedures that are inadequately proven and yet are brought into standard practice.
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This has been very widespread in past medical history. Many examples abound but I quote one in the paper I gave to the Canadian Bioethics Society relating to a cause of blindness in children. We nowadays have a major advance in newborn care, the use of a material obtained from lungs of cows or manufactured, which is reducing mortality and morbidity rapidly in low-birth-weight infants. That procedure, that medication we use, could not have been, could not have been researched at all, if section 15 were interpreted as prohibiting rather than not authorizing.
In considering section 15, others have suggested that it should be dropped from the act. Perhaps that is the right thing to do with it. Perhaps it could be better worded to be absolutely certain that the intent of the act is not to include research as one of the measures at all considered in the act. Not being a lawyer, not having read Professor Dickens's submission to the committee, I made a suggestion for rewording in the brief I have given to you. Having read Professor Dickens's submission, I see that I was obviously wrong with regard to the second and third parts of section 15 in that what is being discussed there is illegal in fact. But none the less, the coalition would be very grateful to see some rewording that would clarify that this is not intended to inhibit the development of research for children. I think that summarizes the situation.
Mr Malkowski: I would like to thank you for your presentation. We have heard from a variety of groups throughout these hearings, many of them disabled consumers themselves. One of the concerns they have raised is the issue in relation to the medical community on the tendency for the medical professionals to try to turn disabled people into "normal people." I know that a lot of what you are talking about is prevention of disease or things that are actually therapeutic in the sense of combating illness, but those treatments that are actually trying to "correct disabilities" seem to have been a concern within the disabled consumer movement.
Dr Oliver Sacks, for example, has come out and said it is very important that members of the disabled community who are interested in being involved in medical training or in redefining the roles of health professionals should be the people who also get involved in medical research, sort of a promotion of disabled people becoming involved as medical researchers, in some ways to change the slant of some of the research. Could you comment on the concerns the disabled community has raised and also on that issue.
Dr Chance: The coalition, I should stress, is widely representative. Represented on the coalition is the Canadian Association for Community Living, the Canadian Cerebral Palsy Association and other disabled groups. Essentially when I started, I stated that the coalition is indeed concerned with the three levels of prevention. We recognize, for example, that the tertiary level of prevention is the prevention of society disabling people by calling them "handicapped," those who are already disabled. So the concerns we have are general.
I think it is not a particularly wrong desire of the medical profession to try to help people to health. Health can be very broadly interpreted. A person with severe cerebral palsy can still lead a very constructive, healthy life. I have worked closely with a cerebral palsied person involved extensively in research.
I am addressing this group as the chairperson of the Canadian Coalition for the Prevention of Developmental Disabilities rather than as a physician who is indeed a researcher and a professor of paediatrics, and in that capacity as chairperson, I am trying to be concerned that what can be offered to children, disabled or otherwise, should be offered to them as it is offered to adult persons.
Mr Malkowski: Then you would agree that it is important for medical professionals who are involved in medical research to also have complete information, understanding both the positives and negatives of specific disabilities so that they are actually fully informed of the various viewpoints out there.
Dr Chance: I think it is very important that as medical professionals we are fully informed. From the point of view of those disabled, I think certain points in this act are undoubtedly very beneficial. The central concern is not with the act or the intent of the act as a whole, but with the wording of one particular section.
Mrs Cunningham: I always say representing London, Ontario, has a couple of great benefits, and one of them is the great advice we get. I am sure my colleague Mr Winninger shares my pride in that. We certainly are pleased to see you here giving us this kind of advice.
My colleague Mr Wilson has advised me that this is not the first time he has heard this concern and that he has said if the government is not prepared to come forth with either some kind of an amendment to the wording or to drop it, as you have suggested, we would certainly be doing that and hoping for its support. My guess is that they are going to do something about it.
Perhaps legalistically we cannot come up with new wording. How would this concern, certainly as the government has presented it in this bill and your own concern, be dealt with if it was not in the legislation at all? How could we be reassured that the concern that is presented because of this wording is going to be dealt with in today's world without this legislation?
Dr Chance: I think one has to state that today's world, for the medical researcher, is one of very careful supervision. I think Dr Lowy went through the procedures with the committee that a research application would undergo in regard to the application, the consideration by both scientists as to its validity and by an ethics committee as to its ethical validity. In our own university, for example, a university bioethics committee considers all applications. Hospital departments will also consider all applications.
I cannot say the surveillance research is put to these days is foolproof; nothing in this world is foolproof. But to view it as impossible to undertake certain very minor procedures to try and benefit children, to try and ensure that children are as healthy as they can be, if that becomes prohibited, that is dangerous for children.
I think medical researchers recognize the past. Anyone who has read a book describing Nazi doctors entitled The Nazi Doctors would recognize the evil that can transpire from the medical profession uninhibited. Particularly clinical researchers, but also basic researchers, are very carefully supervised in their research endeavours. The process is, for some, regarded as tedious, but it is vitally important.
Mr J. Wilson: I may be in some conflict on this. My brother is a researcher, a PhD in the department of zoology at Western and teaches at the med school there. He has been at me about this on several occasions. The government, though, will tell you, because this has been raised a number of times by very learned people, that the wording of section 15 is that it simply does not authorize research, but it would claim it does not prohibit it. The parliamentary assistant to the Minister of Health, Mr Wessenger, has told us that really the status quo remains. We will keep pursuing this.
I guess this is more of a statement, because I am not really satisfied with that answer. It is clear this is included in a section with two other procedures that are clearly illegal under the current law and that there is a problem there. At the very least, perhaps we could get the government to move it out of that section. Really it is just a comment. To back up what my colleague said, we are very concerned about it also.
Dr Chance: It is not only a coalition, who are not lawyers, but very learned lawyers are indeed concerned with its wording -- the potential for ambiguous interpretation suggests that in some way it has to be adapted.
Mr Wessenger: I would just like to make clear to you, Dr Chance, that certainly the intention of the legislation is not to change the existing law at this time with respect to the matter of research. I think it is very important that there be nothing in the act that either expands the right or detracts from the existing law, so I would like to make it clear that is the intent of the legislation. We feel the existing language works well. If clarification is needed, it will be looked at, as I have said to other groups.
I thought I should advise you in case you are not aware -- because I think you have an interest, obviously, in this area -- that Professor David Weisstub has been asked to do a study on this area. I do not know whether you are aware of that.
Dr Chance: Yes, I am aware of it.
Mr Wessenger: I suggest that maybe you should have copies of the terms of reference for the study he is going to do. You might wish to make presentations to Dr Weisstub with respect to this matter, because he is going to be making recommendations, I understand, some time in the summer of 1993.
Dr Chance: Yes, thank you, Mr Wessenger, I am proposing to do just that. I think it is important, though, that within the act as it is worded at present, nothing is stated about Professor Weisstub's work and nothing is stated regarding the Minister of Health's reassurance that research is a different topic to the act. The act itself, as it is worded at present, has confused many people, who are concerned. People who one would anticipate would be able to read legal documents carefully and interpret them appropriately have become concerned by the wording.
Mr Wessenger: Let me just say, Dr Chance, that even lawyers have different opinions on wording, so it is not only the non-lawyers who are sometimes confused.
Dr Chance: I recognize that.
Mrs Cunningham: So you are just going to drop it, Paul, are you not, so we do not have to worry about it?
Mr Wessenger: No, it would not be dropped, because that would expand the whole area to have no limits. I really think it has to be looked at. Is there any ambiguity in the existing language, and if there is, is there a way of correcting that ambiguity?
Dr Chance: Thank you. I think many of us will be delighted to learn that. Just to pick you up on the statement that even lawyers have different ways of wording things, that is precisely the concern of the coalition. The response we saw to the Eve decision was to word a very important document for most researchers, the Medical Research Council's guidelines, such that children were potentially precluded from beneficial research. We do not want to see that happen again.
Mr Wessenger: I can understand that.
The Chair: Dr Chance, on behalf of the committee, I would like to thank you for taking the time out of your busy schedule to come and give your presentation this morning.
I would like to call forward our next presenter, Josephine Wdowiak. If she is not here, this committee will recess for five minutes to give her a chance to show up. This committee stands recessed until 11:40.
The committee recessed at 11:33.
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The Chair: I call this meeting back to order. Since our next presenter has not shown, we will now recess until 1:30 this afternoon.
The committee recessed at 1143.
AFTERNOON SITTING
The committee resumed at 1341.
HOSPITAL FOR SICK CHILDREN, MEDICAL ADVISORY COMMITTEE
The Chair: I call this meeting back to order. I would like to call forward our first presenters, from the Hospital for Sick Children. Good afternoon. Just a reminder that you will be given a half-hour for your presentation. The committee members would appreciate it if you would keep your remarks to around 15 minutes to allow time for questions and comments. As soon as you are comfortable, could you please identify yourselves for the record and then proceed.
Dr Goldbloom: My name is Alan Goldbloom. I am the associate paediatrician-in-chief at the Hospital for Sick Children. I am accompanied by Dr Françoise Baylis, on my right, who is a bioethicist on the staff of the Hospital for Sick Children and has been involved in the preparation of our brief.
I would like to thank you for the opportunity of coming here today and speaking to you about Bill 109. My brief is presented on behalf of the medical advisory committee of the Hospital for Sick Children. I realize that you have heard and may be hearing other presentations from other representatives of the hospital. While there may be some overlap, I hope that our information will complement that which you will be hearing or have heard.
Bill 109 has an admirable goal. It attempts to codify regulations regarding consent which currently reside in several different acts and also to ensure the rights of those who may be mentally incapable of giving or refusing consent of their own accord. Our concerns do not rest with the motives behind the legislation. Instead, they relate to the design of the legislation itself and to the enormous problems that might result from its enactment. We are concerned that some of the proposed safeguards which may be appropriate for some populations could actually serve as barriers to health care for other patient populations.
Throughout the bill there is reference to those who may be mentally incapable of consenting to or refusing treatment. While it may be that this was intended primarily to cover the mentally handicapped, the very elderly population and those whose acute medical problems render them incapable of decision-making, it also includes virtually everyone under the age of 16. Thus, it has great significance for all providers of child health care.
It is generally accepted in our society that parents have the authority and the duty to act in the best interests of their children until those children reach the age of 16. Any stated age of maturity is by definition rather arbitrary, and there may be many 14- or 15-year-olds who have the maturity to participate in decision-making regarding their health. The bill seeks to acknowledge this right, but establishes a procedure that is unwieldy and may in fact be a significant roadblock to adolescents seeking care.
Indeed, adolescent clinics across North America have worked hard to ensure the rights of young teenagers to seek and obtain medical care and advice of their own accord. Thus, teens with problems such as sexually transmitted disease, drug addiction and emotional problems can seek help on their own. Many of these children would not seek or receive the needed help if they had to involve their parents or if they had to submit to any kind of bureaucratic process to determine their capability to make decisions. We therefore agree that this population needs to be empowered, but we would maintain that it is already empowered under existing law, which permits them to seek help of their own accord.
Unfortunately, the broad brush of this act puts all individuals under the age of 16 in the same category. Thus, it may be acceptable for a 15-year-old to refute his or her incapability of consenting; it is quite another thing for a five-, six- or seven-year-old. I realize you have already been presented, in the brief from the Ontario Hospital Association, with examples of some of the ludicrous situations that might arise if the bill were applied literally to the 5-year-old child who objects to a needle. Indeed, most pre-teen youngsters can be counted on to object to most treatments or procedures that might cause pain.
I further understand it was not the intent of this legislation to interfere with such treatment when agreed to by a parent. If so, then the wording must be clarified to reflect the true intent. Without such a change, we would be faced with an unwieldy bureaucratic nightmare, calling in advocates for every child who says no.
There are, however, some circumstances which are not so clear-cut. For example, a 10-year-old child has leukaemia. We now know that 75% of childhood leukaemia can be cured with appropriate treatment, but the treatment is sometimes unpleasant. One of the unpleasant side-effects of chemotherapy is temporary hair loss. Upon hearing this, one can imagine a child adamantly refusing treatment. The parents want treatment to begin as soon as possible in order to have the best chance at preserving this child's life. Again, the health care provider must inform the child of her right to an advocate, and if she chooses to take advantage of this, an advocate must be called in as prescribed in the legislation.
This solution to the problem involves bringing in an outsider at a time when a family is under maximum stress and is attempting to deal with some of the most painful and difficult crises that any family can encounter. This is a time when a family unit needs to be nurtured, supported and strengthened so that it can deal with the situation. Perhaps I can share with you how we would handle such a problem under existing legislation.
First, I can tell you that we very rarely impose a treatment on such a youngster. Children in these circumstances are usually terrified, as are the parents. They need time, they need to talk, and this is the time when we involve our multidisciplinary team, which may involve social workers, child psychiatrists, child life workers, nurse specialists and physicians. Such problems can and do get worked through in this fashion on a daily basis at our hospital. In other words, as far as children are concerned the system works. I am tempted to suggest, "If it ain't broke, don't fix it."
If we took this child's initial objection at face value we would, according to the legislation, have to inform the child of her right to an advocate. This is probably the worst possible time to invoke the bureaucracy by calling in an advocate. To do so automatically establishes an adversarial and destructive relationship between the child and the parents and perhaps between the child and the care givers.
In dealing with the older child, such as a 14-year-old, the legislation seeks to empower that individual through the availability of advocacy. Again, I think you should know that it is our current practice not to treat a seemingly capable 14-year-old over his or her objections. However, true empowerment for that child does not derive from provision of an advocate at the first sign of any objection. Instead, I believe empowerment comes in the form of support, listening and counselling of that individual in order to help him or her work through a difficult decision-making process, a process that may take several days or weeks to come to completion. Unfortunately the bill, taken literally, would negate the most natural and biologic of advocacy or protective roles: that of the parent for the child. It also ignores the fact that child health care has its foundations in advocacy for children.
There are, of course, situations where the parents' wishes are not in the best interests of the child. Again, I could use the example of a child with a treatable disease but whose parents may object on the basis of personal or religious beliefs. The existing law, the Child and Family Services Act, already covers this situation, in allowing us to identify a child in need of protection. Furthermore, the child welfare agencies that are empowered by this act have extensive experience in dealing with these situations, and we do call upon them quite regularly. I see no need for any other advocate in this situation.
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Of particular concern to health care providers is section 9, which states, "In determining a person's capacity with respect to a treatment, a health practitioner shall apply the prescribed criteria and follow the prescribed standards and procedures."
This vague reference to "criteria" and to "standards and procedures" is not further defined or clarified. Will one set of criteria apply to all situations and all age groups? Who will determine the criteria, standards and procedures? Once determined, a care giver might be sued on the basis of not having followed such criteria to the letter of the law. The wording is dangerously loose.
Again, I believe we have a system in place regarding children that functions well now. Each practitioner uses his or her professional judgement in determining a child's capacity on a daily basis. We use that judgement as the basis for determining how we explain things to children or in determining whether we should treat a 12-year-old without a parent's consent.
I believe that section 9 should read, "In determining a person's capacity with respect to a treatment, a health practitioner shall use his or her professional judgement and training." Obviously the health practitioner must still be responsible for his or her judgement and must be able to defend it, as we must for any type of care we deliver.
Subsection 16(8) presents another concern for those of us in health care. It suggests that if two parents are in conflict over an issue of consent regarding their child, the public guardian or trustee should be called in. Again, the legislation would appear to deal with a family in conflict by invoking rather legalistic mechanisms.
In current practice we would see this as a family that needs help and we would mobilize the resources available in our multidisciplinary team to help a family work through a problem. This is a very common situation, yet it almost always gets resolved in a far more supportive and therapeutic way than the legislation would prescribe. In the rare instance in which resolution is not achieved, we still have the children's aid society or other child welfare agency available to us as a resource and we would see no need for a public guardian or trustee.
I also want to touch on the subject of research in children. I realize that research is not the major focus of this bill, but the topic becomes relevant by virtue of its specific exclusion in subsection 15(1). If subsection 15(1) stays in the bill in its present format, it will be subject to misinterpretation and has the potential to stop all clinical research involving children in Ontario. At first glance, this may appear to be an act that attempts to protect children; however, I firmly believe that this section of the act may do children long-term harm. It says, in effect, that adults are allowed to benefit from research but children may not.
I would like to explain that the subject of research in children is one which immediately causes people to react negatively, as it usually evokes rather ghoulish images of children being subjected to painful or noxious treatment as some form of human guinea pigs. This stems, I believe, largely from a general ignorance of clinical research and of the preventive measures that are already built into the system now in the 1990s.
To clarify this I must give you some examples. First, I would point out that all research protocols undergo critical review by multidisciplinary ethical review committees before they are approved. These are not rubber stamp approvals. Strict guidelines are enforced, research that might do harm is not permitted, and potential benefits must be clearly stated. But I think I can clarify with a practical example.
About four years ago a major study was conducted by paediatricians in Toronto in collaboration with the infectious disease division at the Hospital for Sick Children. It involved a common problem, and that is the way children react to immunizations. Any of you who is a parent will know that after baby shots sometimes children get a fever and are irritable for a few hours or a couple of days. These immunizations are standard and they are required by law. It is very common practice to give infants acetaminophen, also known as Tylenol or Tempra, if fever or discomfort should develop.
Some of our paediatricians wondered whether giving acetaminophen just before the immunization might prevent discomfort. A study was done using several practices in Toronto and involved giving some of the children acetaminophen and giving others a placebo just prior to the immunization.
In order to embark upon this study, an ethical review was completed, approval was obtained and every parent had to sign a form indicating that he or she consented and had to be fully informed about the study. Hundreds of babies were enrolled. The results have been published and indicated that indeed the reaction could be prevented with a dose of acetaminophen. That has been disseminated and is standard practice now by many paediatricians across North America.
I think you can imagine how difficult it would have been if an advocate had to be called in to sign each consent form at each well-baby visit in a paediatrician's office after sitting through a hearing to determine whether it was appropriate for the infant to participate.
Much research in children involves issues of acute care, and then there are practical problems of involving an advocate. For example, in every paediatric emergency room we see children with asthma who arrive in considerable respiratory distress and with difficulty breathing. We usually administer medication immediately, and this is given through a mask; the child inhales it. There has been some discussion recently about whether more frequent doses of the same medication might give greater relief.
Even this manoeuvre, if we are to study it, requires ethical review and informed consent before we can begin. Because it is at the time of acute treatment, there is no time to involve any kind of formal advocacy process. If it were felt that an advocate had to be involved, this kind of research in acute care would simply cease and our current state of knowledge of all acute treatment would remain for ever at the 1992 level.
Research is often very closely linked to treatment, particularly in serious diseases. We are always looking for improved outcomes in childhood cancers, liver disease and kidney disease, and often treatment itself is part of a multihospital research protocol involving new or experimental agents that have been shown to have significant promise. Most parents have been eager to participate in the hope that they will help to find new and better treatment for their child's ailment. Survival in childhood leukaemia was almost zero 30 years ago. In 1992 it approaches 80%. If it were not for research in childhood, we would still be at zero. The dramatic improvements in the survival of tiny premature infants can be attributed directly to research involving that very population of infants. Informed parental consent is always obtained, but there would never be enough time to involve a government-appointed advocate during the few minutes between the time of birth and the time treatment must begin.
Thus, when it comes to research, I think those who draft the legislation need to become cognizant of the existing safeguards and review processes which are stringently enforced not only by all teaching hospitals but also by all major granting agencies. Somehow, research seems to be portrayed with a negative connotation, as something from which children must be protected. We do not see it that way. We see research as an enormous benefit, but one which will be denied to children if the act is passed. The results of research in adults is generally not applicable to children. Section 15 therefore has the potential of stagnating all paediatric research in Ontario and must be altered. We realize that a separate review, the inquiry on non-therapeutic medical procedures on behalf of mentally incapable persons, will be addressing these issues in detail, and we will be making submissions to that inquiry.
In summary, I hope that I have been able to demonstrate to you that those of us who have dedicated our careers to children's health are deeply concerned about the potentially harmful effects of this legislation and urge that it not be passed in its present form. I would just summarize by saying that we support the submission made by the representatives of adolescent medicine at the Hospital for Sick Children two days ago, which questions the arbitrariness of the age 16 limit; that in ordinary circumstances we feel the parent should be the advocate for the so-called incapable child; that the existing child and family service agencies throughout Ontario are in a position to provide further advocacy when needed, and finally, that section 15 on research needs to altered.
The Chair: Thank you. Questions and comments?
Mr Wessenger: Yes. Thank you for your presentation. Just to clarify the situation, I assume what you are advocating with respect to the matter of age is that it be left at the common-law position where it is determined whether the child has the capacity or not without any presumptions. Is that correct?
Dr Goldbloom: That is correct.
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Mr Wessenger: Second, with respect to the matter of research, I would like to assure you there is intent to change the existing law with respect to the matter of research, and if that needs clarification, it certainly will be done.
Last, with respect to the matter of a family dispute in subsection 16(8), just looking at that section I would suggest to you that there is nothing in that section that would prevent you from attempting to resolve the problem in a non-emergency situation by using your resources to try to get agreement. I do not see anything that would prevent that approach. I certainly would encourage that approach. It ought to be encouraged before you go to another step.
The only comment I would make with respect to your saying we already have a mechanism under the Child and Family Services Act is that the mechanism involves a court application, which could take more time than the procedure under this act, which merely requires the consent of the public trustee. I am just suggesting it might be more expeditious as it is set out under the act. I agree there is a mechanism existing, but it would seem to be more expeditious and not involve court procedures. I would just ask you to comment on that.
Dr Goldbloom: I guess what has not been clear to me in reading through the bill is the timeliness or the urgency with which one must respond to such a situation in terms of calling in an advocate. Does it have to be immediate when a conflict is observed or when someone says, "No, I object," or is there in fact time to try to work things out in the way we normally would do now? That is not clear to me in the act. Françoise, I do not know if you had some other comments about that as well.
Dr Baylis: No, I think that was our concern. It reads right now "demonstrates a wish," and it is not clear to us when one demonstrates a wish either to refuse or to consent. If that means saying no or if it means pulling back, then there does not seem to be a time frame built in for us to use existing mechanisms that might take quite some time. Sometimes dialogue takes, I would say, at least a week or so. At what point do you call in the advocate? It seems to us in our reading that there is not an interim period allowed for.
Mr Wessenger: I think really that calling the advocate only relates to the child and does not really relate to the parents at all; you would not be calling in an advocate where the parents disagreed with respect to treatment. I think it would only be the situation where a child who was capable of expressing an opinion would be -- maybe I will ask you this as a supplemental follow-up question. It has been suggested that perhaps only children over a certain age might have the right to seek an advocate, because it is obvious you do not want an advocate called in for a four- or five-year-old. I think that is quite clear. It is certainly not the intent of the legislation to have an advocate come in and advise very young children. On the other hand, if a 13-year-old wishes to make his or her own decision and there is some doubt about whether that child has the capacity, then I think it is to give the child perhaps in that type of area a right to call on an advocate. I am wondering if there is a minimum age you would think would be appropriate for rights advice to a child.
Dr Goldbloom: I have difficulty with a specific age because of the tremendous range of maturity we see at any given age. We see 13-year-olds who may be behaving more like an eight- or nine-year-olds and similarly some very mature 11-year-olds. Obviously any stated age becomes very arbitrary, and I guess that is why I have some difficulty with the process. I would rather see a mechanism whereby we could use existing regulations to identify a child who, in a situation of true conflict, needed some help, and I think perhaps a mechanism working through existing child welfare agencies, for example, that are supposed to speak for children in need of protection, if you will, might be a better route than going the advocacy route.
Mr Wessenger: I think it should be made clear that certainly it is the intent of the legislation, and always has been the intent, that a capable child should be able to make the decision concerning his or her medical treatment. That is certainly a principle of the legislation. As I said, we may need some improvements to clarify that and to make it work better, but certainly that is the basic intent of the legislation.
Mr J. Wilson: Thank you, Dr Goldbloom, for your presentation. This really is a follow-up to Mr Wessenger's line of questions. You mention on page 4 that the presumption is that calling in the advocate would create an adversarial situation. We have had debate on both sides of this issue. Have you had any experience in that, or is that just your reading of the act? Some people have explained that because the advocate needs all these powers, we assume there is some sort of adversarial system, but we have also had many other people saying no, that is not what advocates do and they are simply there to give rights advice and speak on behalf.
Dr Goldbloom: To answer your first question, no, I have not had specific experience with it. Ordinarily I do not see advocacy as automatically being an adversarial position. What I do see in this situation, in the situation of children, is an advocacy interfering in the normal family structure, and that is where I see it becoming possibly adversarial. For example, I would have no problem with the idea of an advocate speaking on behalf of an adult who was incapacitated. I see nothing adversarial about such a relationship. What I do see as a potential problem here is interfering with what we accept in our society as a normal family structure. I would rather maximize our utilization of those structures and relationships and work them out as best we could, because I think the long-term outcome will be better.
Mr Malkowski: Thank you for your presentation. We have heard several presenters from the disabled community and also some parents who have disabled children. Their experience is that the doctors give them information, in terms of medical research or the kind of experimental treatment that might happen. Often they ask what treatment is going to be included, what are the risks involved, what are the potential side-effects, and from their experiences, they have not been fully informed by the physicians. What they say is: "Oh, they'll be okay or there'll be an improvement. Just sign the form." Then of course they go ahead and sign the form, but that is not what happens in reality.
I would like to ask you, do you think it is important that the physicians are responsible to fully inform what the benefits as well as the possible side-effects are before they consent to treatment? Do you think doctors need to be accountable for fully informing the patients?
Dr Goldbloom: Thank you for your question, Mr Malkowski. I certainly do. The answer is very simple: I think physicians must be fully responsible for informing about all aspects of the treatment, both positive and negative, and I cannot support in any way any episodes where that has not occurred. I hope that in our hospital in particular, through our ethical review team, which has physicians and laypeople, we have been able to ensure a mechanism that scrutinizes such research extremely carefully.
The Chair: Dr Baylis and Dr Goldbloom, on behalf of this committee I would like to thank you for taking the time out this afternoon and giving us your presentation.
Dr Goldbloom: Thank you.
CITIZEN ADVOCACY WINDSOR-ESSEX
The Chair: I would like to call forward our next presenter from Citizen Advocacy Windsor-Essex. Good afternoon. I would just remind you that you will be given a half-hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 minutes to allow time for questions and comments. As soon as you are comfortable, could you please identify yourself for the record and then proceed.
Mr LaBute: Good afternoon. My name is Dean LaBute. I am vice-president of Citizen Advocacy Windsor-Essex. I am accompanied today by our managing director, Shirley Jarcaig. Mrs Jarcaig will make the presentation of our submission to this committee. Following that, we both would welcome your questions.
Mrs Jarcaig: We of Citizen Advocacy Windsor-Essex are a local voluntary advocacy organization incorporated in 1975. We as an organization would like to contribute our individual point of view to this new legislation.
We commend the government for taking the initiative to introduce legislation that, for the first time anywhere, supports disabled consumer involvement and responsibility. We feel there is potential to do much to address the needs of vulnerable people in this province with this new legislation. The effort made by the government to have direct contact with advocacy groups in consultation over the drafting of this bill is also appreciated by all of us in the advocacy movement.
The following concerns are being presented to this committee, based on the years of experience we as an organization have had in providing advocacy in our community. The Citizen Advocacy organizations of Ontario figured heavily in the O'Sullivan report on advocacy for vulnerable adults.
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Our concern is that the concept of long-term advocacy provided in the context of an ongoing relationship which our organization practices will be eliminated by legislation which promotes short-term problem-solving. It has been our experience with short-term situations that the individual who requires short-term advocacy has repeated need for it as situations arise. If the individual lacks a support network of family and/or friends to assist them with the problems of daily living, he or she is likely to be subjected to potentially abusive situations on a fairly regular basis. Abuse is not always intentional, it is more likely to arise as a result of neglect, lack of education or awareness, or falling through the cracks of a system that has criteria for everything. We find that the one-to-one long-term matching is far more attractive to volunteers than short-term situations. The relationship carries rewards for both individuals. It promotes the dignity and acceptance of the vulnerable person. Short-term problem-solving does not bring the same sense of satisfaction, and it is far more difficult to recruit volunteers for that task.
Over the years, we have proven to our funders that advocacy services can be provided by members of the community for a relatively low cost. The quality of that service and its residual benefits of integration, community awareness and community ownership make it superior to what can be provided by paid professional advocates. Self-advocacy and systemic advocacy have been outgrowths of our program which we encourage and assist.
Consumer empowerment is evident in all aspects of the organization. The majority of our board of directors and committee members are vulnerable adults. We have accomplished these goals through years of painstaking effort and education.
Many individuals who have suffered perceived abuse from the social service system do not trust the individuals employed by that system. Paid advocates may be regarded in the same light, particularly if those individuals were previously employed in the social service sector. Trust does not develop simply because someone says, "I am an advocate." Trust is developed over time, and certainly not on the basis of the amount of training received or the number of degrees acquired. Although paid advocacy may be necessary to meet the many needs of a large population because sufficient numbers of volunteers may not be able to be recruited, in our eyes it is an inferior form of advocacy. Limited funding will also limit the number of paid advocates available. Volunteers will need to be used to prevent overloaded paid advocates from providing minimal, ineffective advocacy because they are spread too thinly to devote the time required for each individual.
We have heard the term "empowerment" used a great deal, but professionalism contradicts the meaning of this new social service catch word. Our concern is that professional advocates will consider the volunteer an inferior worker, particularly if they have never worked with volunteers or are not required to do so in their positions as advocates. Perhaps some of that perception will be relieved if those people paid to advocate are also of the vulnerable population. Seniors, physically handicapped, former psychiatric patients can be and have been powerful advocates for their own populations. They are also far more likely to be aware of the problems that arise and would be able to readily gain the trust of a vulnerable person. It is hoped that a disabled advocate would also identify strongly with the person for whom he or she is advocating. The advocate is never in control, it is always the person whom he or she is representing that has the power, whether the advocate agrees or not.
Our organization's experience with capable volunteer advocates who are also disabled has been very positive. Able-bodied paid advocates should not be hired solely on the basis of academic background and experience. A sensitivity to the people they are dealing with will be essential. We feel that the number of paid advocates should not determine the extent and quality of the service provided.
Community-based programs are not only more sensitive to the needs of the people in the community, they are more action-oriented and cost-effective. Bureaucracy, top-heavy with administrators who dictate actions from, in our case, 200 miles away will only encumber a system, making it slow, inefficient and expensive. Regional offices have a tendency to form a network that requires a tremendous amount of paperwork and not a great deal of identity with the community in which it is located. If this advocacy system is to be successful in accomplishing its goals, then each community will have to have some responsibility for it.
The present wording of the legislation does not eliminate social service providing agencies from housing advocates. We feel that without such wording, the possibility of conflict of interest will inevitably result. This has been illustrated countless times by the situation presently experienced by adult protective service workers for the developmentally handicapped and other advocacy programs housed in services. An advocate must be able to work independently and only in the best interest of the individual or vigorous advocacy will never result.
An advocate housed in a service providing agency would be identified with that service simply by his or her physical presence. The individuals seeking assistance will think of the advocate as a service provider and the advocate himself would be exposed to the service provider mentality on a regular basis. Even if the service housing the advocate does not have a direct conflict, it is still part of a system that the advocate may need to confront at any time. Services do not like to antagonize each other. Each service agency does not wish to damage relations which could benefit agency funding, interaction or cooperation. The good of the agency always takes precedence over the good of the individual. An organization that solely deals with advocacy takes an understood role that sets it apart from service provision.
Our organization also advocates for children and families. We are concerned that many children who are in need of advocacy will not have access to that system. Present legislation may offer legal protection to the child. Our concern is that non-legal issues may not be addressed. This would particularly be true of children who are in care facilities. When the family is not present to take an active role in advocating for its child or lack the skills, interest or knowledge to do so, the child is far more likely to be neglected or abused. Service providing agencies, care providers, school systems etc, will do what is in their own best interests and may lose sight of an individual child whose needs differ from the norm. Without strong advocacy these children become lost in whatever system they happen to be involved.
We are also concerned that organizations such as ours will no longer be allowed to assist children and families of children when they are in need of advocacy. If rigid guidelines are developed as to who can advocate and for whom, much of the sense of community involvement and ownership regarding advocacy for the vulnerable may be lost. If alternatives are not available to children, must the advocacy system turn them away without recourse?
Another concern we wish to express is for those vulnerable individuals who cannot give direction to an advocate. They would not be included in the advocacy system because they would not be capable of giving consent. These people are those who are most likely to be in need of advocacy. A public guardian 200 miles away will not ensure that those most severely disabled are receiving proper care or that their rights are respected. Suspected abuse could not be investigated or addressed.
There is a danger of an advocate abusing an individual as well, but the risk is worth taking when no other foreseeable alternative is possible. Such advocates may need to be given stricter guidelines and require more monitoring with greater accountability. Our experience, however, in dealing with this population of vulnerable adults has been a very positive one.
All three pieces of legislation being considered by this committee require an advocacy system in place. If all this legislation is passed at the same time, who will provide the advocacy required for consent to health care and guardianship prior to the establishment of the advocacy system? The advocacy required in the guardianship and consent to health care is quite technical and will require advocates with specialized training. We would suggest the advocacy bill have an opportunity to be implemented before the other two pieces of legislation go into effect to avoid the difficulties and confusion that may result.
We appreciate the opportunity to present our point of view to this committee. Our organization is fully committed to advocacy for vulnerable people and we are glad to see that the government of Ontario is willing to make that same commitment.
Mr Poirier: Thank you for coming forward. It was a most interesting brief. There is always a great debate between voluntary and paid advocates; the norms, centralized or decentralized. For each system, no matter which way you cut the cake, you can list advantages and disadvantages, I am sure. The perfect system does not exist, just like the perfect MPP does not exist, nor will it ever.
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Mrs Cunningham: Who are you speaking for?
Mr Poirier: I am speaking for the humble one, Mrs Cunningham. Thank you for making my day. There it is.
I know a lot of volunteers do some excellent work and whatever. What I am worried about is that maybe in some cases the volunteer advocate, with the training that may be required -- I am sure they get involved with very complex issues, very complex laws and whatever. I am just wondering about care for the client, the person who needs the services of an advocate. How do you feel about the downside of this, on a voluntary basis that would decentralize like that? We must admit there is a possible downside to that: the training, the uniformity of the training; responsive to what authority, should there be a problem that the client is not served well? What is your feeling about this? I am sure you have discussed this.
Mrs Jarcaig: Yes we have. With regard to the training, in our own organization we do ongoing training. For short-term, problem-solving types of situations the person probably would be receiving more training, but I would recommend it be more experience oriented, learning how to advocate through doing it, with assisting someone who is either paid or has had a lot more experience doing it. Getting a degree or taking a bunch of courses is not going to make an effective advocate. It is going to come from the experience of actually advocating for that individual. That is where they are going to learn to become effective advocates. For the short term I think there probably is a lot more contact than with whoever is running the program, be it paid advocates or however the system finally works out with us. We have coordinators in our program and we are the ones who act as follow-up and support to the advocate. If they have a problem or an issue they feel they cannot handle on their own, they call us up and we try and lend them the information, support, whatever is necessary for them to get through that particular issue or problem, whatever it may be.
Mr Poirier: Do you have some paid advocates? Do you have a mix?
Mrs Jarcaig: What we have are voluntary advocates, a coordinator of the program and myself. We also advocate on behalf of people as well. We only get involved with the voluntary relationships when the advocate and the partner feel they want us to be involved. It is all directed by the partner; that means the person with the disability. They determine what kind of advocacy they want, how they want to proceed, and then the advocate will follow through on the partner's wishes.
Mr Poirier: If the bill came into effect tomorrow morning, or soon, do you feel you could rely permanently, long term, on the supply of volunteer advocates, quantitywise and qualitywise?
Mrs Jarcaig: This is the only reason we feel paid advocacy probably should be involved too. We cannot guarantee there will be an infinite number of volunteers available for all situations. I do not think that is realistic. We need to acknowledge the fact that there will be certain forms of advocacy and certain situations that develop that probably a paid advocate should definitely handle for various reasons.
Mr Poirier: So you could see like a hybrid system.
Mr LaBute: It is our contention that through incorporation in the legislation of the recognition and adoption of long-term advocacy, we find that an excellent entry level for volunteers, under the coordination and direction of our paid advocates, our professional staff. With their guidance and direction it has worked well. We are going on 18 years for this organization in Windsor. If it works, it should be recognized. If it can work in Windsor, it can work in Oshawa, Kingston, Toronto etc.
It is our contention that long-term advocacy and the use of volunteers should be an intrinsic part of Bill 74 and that when the commission is allowed to come up with its operating parameters and the code of ethics and guidelines for implementation of the program, our needs and those of the people we are there to assist will be met.
Mr Poirier: All these volunteer advocates would have to adhere to these codes of ethics and parameters and whatever?
Mr LaBute: Absolutely.
Mrs Jarcaig: They essentially do already.
Mr Poirier: I am sure.
Mrs Jarcaig: We do have a very strict philosophy within our organization and when people agree to be volunteers in our program they agree to what the purpose of the organization is. It is the empowerment of the partner, the empowerment of the disabled person.
Mr Poirier: Fair enough. I was sure your volunteers would meet those requirements. I was wondering about the loose Exocet missile somewhere in Ontario that would do a lot of harm to the image of voluntary advocates. It only takes one of those to really ruin the image sometimes.
Mr J. Wilson: Thank you for your presentation, the gist of which I gather is that you are in favour of advocacy and you promote long-term advocacy on a volunteer basis -- which I think is tremendous, by the way. I gather you are sort of looking to the legislation, the legal document, and to us to maybe put some safeguards in to make sure you are not left out when the new commission --
Mrs Jarcaig: To make sure we are not eliminated, quite frankly.
Mr J. Wilson: That is the concern? It is that strong?
Mrs Jarcaig: I think it is for all Citizen Advocacy programs. We presently do get government funding and United Way funding. They will say: "There's an advocacy system in place. Whatever the government decides is sufficient advocacy should be reasonable, so why does an organization like yours need to exist?"
Mr J. Wilson: It is a good point because we have asked, in the process of putting it together, literally hundreds of groups that received grants and that claimed to be advocates. My view is that no matter how well intentioned this legislation is -- that is what we hear from the government, that it is well intentioned -- something will have to give in the system. In fact, I will go to the point of asking groups, "Are you willing to give up your grant in your organization to fund the new one?" because we just cannot in good conscience add another layer of bureaucracy and expense to the taxpayers.
Mr LaBute: We are not asking for another layer of bureaucracy at your expense --
Mr J. Wilson: I know you are not.
Mr LaBute: -- but rather a blending, a hybrid of the two. We do believe it will work. In fact, we have proven in Windsor that it works, both for short-term systemic and also long-term advocacy.
Mr J. Wilson: I agree with you. How do we make sure that what we are saying right now does not happen, that you are not eliminated? Can you even think of any particular clause in the legislation we should be adding to? Perhaps it would be better to delineate actually who is on the Advocacy Commission. I do not know.
Mrs Jarcaig: We are part of the Ontario Advocacy Coalition. In their submission I think they made it very clear that they feel the majority of people involved on this commission should be vulnerable people from organizations representing vulnerable people.
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Mr J. Wilson: That should ensure --
Mrs Jarcaig: That should hopefully be a start there, yes. It will be up to the commission. We do not want to put too many loopholes or too many things in there that would hamper the commission in doing its job. We realize it is not going to be an easy, one no matter what.
Mr J. Wilson: I agree, but as a legislator I do not want to set up an arm's-length commission to do whatever it wants to do, either, and leave it up to the cabinet to make up regulations. We have almost done that with human rights and ombudsmen and all that. Then we do not fund them properly and we end up with huge backlogs. For a lot of people we create a lot more problems than we are solving. It is all well intentioned. If you read the debates when many of these other boards and commissions were set up, the intentions of my government at the time were wonderful. They made great speeches, but it does sometimes boil down to a question of resources.
Ms Carter: Thank you for your submission. I think really you are very close in spirit to Bill 74, certainly the way I see it. I do not see in what way there is anything in Bill 74 that would prevent long-term voluntary advocacy. In fact, it actually says in subsection 3(2), "This act applies in respect of advocates who work, whether on a paid or voluntary basis, for the commission or in community programs operated under this act."
It is also stated in subsection 6(1), "A majority of the members of the commission shall be persons who have or have had a mental or physical disability, illness or infirmity."
We are not looking at setting up something very bureaucratic, rigid and professional. We are looking at something that will be arm's length from government, very consumer oriented. You have both hinted in what you have been saying that some kind of two-tiered system might develop where volunteer advocates who could maybe spend a long time with a particular client, or practically all their time, be it their friend or relative, could nevertheless call on the extra expertise of the paid advocate. Do you think that is the way it might develop?
Mrs Jarcaig: That is what we are hoping will be the case, because unfortunately, what happens with social services is that the volunteer does the Joe jobs for the professional staff who do not want to do those jobs, and there is almost like a competitiveness: You do not want your volunteer to be too good because he might show you up. That should not be the case here. This should be very community based, community oriented.
Ms Carter: That is certainly how we envisage it. I think that is how it will develop.
Mrs Jarcaig: That is what we are hoping for.
Ms Carter: We have also heard some groups say that advocates interfere with family support systems. Can you tell us what kind of experience you have had with that?
Mrs Jarcaig: We found the very contrary to that. Because there is a long-term relationship between the two individuals, there is a relationship that also develops with the family. There is a trust that sets in, and very often the advocate is an assistant to the family in helping with various issues where the family feel they are being left in the lurch to deal with them on their own.
Ms Carter: There again, we can kind of see a two-tiered system. We could see the advocates maybe helping parents who have vulnerable children and who need a little support and guidance in dealing with them.
As I say, I do not see a split between the way you want this to turn out and what is envisaged in the act.
Mrs Jarcaig: I think our main concern with the act is that it really looked like the act was just to do very short-term, problem-solving types of things. It really was not looking at advocacy as being done on a long-term basis in a relationship such as we have in our own program.
Ms Carter: Maybe the only other problem we have with what you are saying is that you do emphasize, as the act emphasizes, that it should always be the person, not the advocate, who is in control. It is his or her opinions that the advocate should be carrying forward and acting on, yet you do want advocates rather than guardians to assist people who are not capable of making their own decisions. Can you explain how you reconcile that?
Mrs Jarcaig: We have people in our program, very dedicated advocates, volunteers in our program, who advocate on behalf of people who are living in institutions and who are not capable of giving any kind of consent or response, but who certainly are deserving of having proper care, deserving of knowing that there is someone in the community who cares about what happens to them and who they are as people. That is something that, if you had an official guardian, just would not happen. You have an office there. You have people who will deal with issues if they are informed about them, but what we are talking about is somebody who is there to recognize that person as a person.
Mr Wessenger: Thank you very much for your presentation. I think you are filling in some of the gaps for me in understanding how the advocacy situation is in Ontario. First of all, I would like to know -- maybe you cannot answer this -- how much of Ontario is blanketed with these advocacy services such as yourselves. Do you have any idea?
Mrs Jarcaig: I think there are presently something like six Citizen Advocacy programs in Ontario. We are all functioning at different levels because of funding problems or issues or whatever you might call it. I believe the Ottawa program made a presentation here on Monday.
Mr Wessenger: Would you suggest that it is a good model to have for all of Ontario?
Mrs Jarcaig: That I cannot say. We are all very independent of each other, all the Citizen Advocacy programs in Ontario. We all go out and get our own funding. We are all based on the needs of our own communities. What might be good for Windsor, and the policies that Windsor sets, might be somewhat different from what Ottawa sets and what Ottawa does in response to the needs in its community.
Mr Wessenger: For instance, how many volunteers would you have in your program for providing services?
Mrs Jarcaig: Right now we have between 40 and 45 long-term relationships, and then we do advocacy for between 20 and 25 people on a short-term basis. But we have a very limited staff and very limited budget etc.
Mr Wessenger: You may not be able to answer this question, but I think you are suggesting in effect a two-tiered system, for your area anyway. Your organization would continue to do what we would call primary advocacy, and then you are looking at the paid advocate as probably taking up either some of the systemic role or perhaps the very difficult cases that you cannot pursue, that you do not have the resources to pursue. Is that what you are sort of looking at?
Mr LaBute: We are asking that they be housed together, as they are with the Windsor Citizen Advocacy. It is a working together of the two forms of advocates, working for the benefit of the vulnerable people we deal with on a day-to-day basis.
Mr Wessenger: Of course you see it working on a cooperative basis.
Mr LaBute: Absolutely. Housed together, not as a separate bureaucracy but within the same structure; a division of responsibilities up to a certain point. The volunteers are involved. When it reaches a point where they need to bring in the professional advocates or the paid advocates, they would be brought in, as would other resource people who would assist on an as-needed basis.
Mr Wessenger: This is another question you may not be able to answer. In terms of numbers of advocates, with your present system in operation in your area, would you see a need for a large number of paid advocates or would a few be all that would be required?
Mrs Jarcaig: That is really difficult to determine. I do not see that this system is really going to be able to have huge numbers of paid advocates. There is just no way you are going to be able to afford it. There is no way it is going to be able to happen, so you have to rely on the resources within the community. I would say that the majority of advocacy should be done by volunteers if at all possible.
Mr Malkowski: I just want to clarify your concern about the Advocacy Act, saying that it will not include volunteer advocates. Is that what you are concerned about?
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Mrs Jarcaig: No. What we are concerned about is that it does not appear right now to be particularly volunteer-based. It looks right now like it is something where you would have a system of paid advocacy, and maybe volunteers would be something that would be sort of a sidelight of it. But it appears that the emphasis is on paid advocacy.
Mr LaBute: What we are requesting is that equal recognition be given to both paid and volunteer advocates and that they both have a role to play in the advocacy program.
Mr Malkowski: I just wanted to clarify that, because I think the Advocacy Act is clear that it includes both paid and volunteer advocates. The Advocacy Commission itself will be at arm's length from the government and will develop regulations to make sure it fills in the gaps where it feels services or resources are missing. So I am just wondering if you would agree that the goal should be a complete system that would include both paid and volunteer advocates.
Mr LaBute: Absolutely.
Mr Malkowski: Okay, I have a last point of clarification. You were concerned about children not being involved. I do not think the Advocacy Act says anything about preventing advocacy for children. There is nothing in the act that stops advocacy for children.
Mrs Jarcaig: Were there not age limitations placed there?
Mr LaBute: That was our understanding. I believe 16 was the age we understood.
Mr Malkowski: Just to clarify, what I am saying is that we are not stopping children from being involved in the advocacy process. We are not stopping that. Perhaps Trudy could clarify this point.
Ms Spinks: Yes, I think what Mr Malkowski is saying is that the Advocacy Act does not preclude existing groups that provide advocacy services to children on a voluntary basis from continuing to do so.
The Chair: Thank you, Mr Malkowski. Mrs Jarcaig and Mr LaBute, on behalf of the committee I would like to thank you for taking time out today and coming and giving us your presentation.
Mr LaBute: Thank you, Mr Chairman and committee members.
MADELEINE HONEYMAN
The Chair: I would like to call forward our next presenter, Madeleine Honeyman. Good afternoon. Just a reminder that you will be given a half-hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 minutes to allow time for questions and comments. As soon as you are comfortable, could you please identify yourself for the record and then proceed.
Mrs Honeyman: Thank you. I am Madeleine Honeyman of Ottawa. I am speaking as a consumer-caregiver and long-time advocate on behalf of Alzheimer's people and their families and older people generally. I thank the committee for allowing me to speak. Perhaps you would give me permission to speak on the advocacy part of my presentation first, because we have been talking about advocacy and perhaps what I have to say on this will enlarge what we have been talking about here.
First of all, in the Advocacy Act, Bill 74, I am concerned, and I know that other people who are working in the same area as I am are concerned, that it says the majority of the commission will be or have been disabled. If this is the case, it effectively closes out people who are cognitively impaired, and we would respectfully ask how they are going to be represented on this commission, because they cannot represent themselves.
Because it also states in this that the commission shall provide advocacy services and will offer training programs, I am very interested in what has been said here today about volunteer advocates. The province is really covered with volunteer advocates. That is one of the major things that associations like the Alzheimer Association of Ontario and the Parkinson Foundation do, although they are not formalized in being called advocacy groups.
My concern is how you are going to train these professional, paid advocates. Who are they going to be? There is nothing in any of the material that I received -- I have read it many times -- that even suggests what qualifications and educational background these people are going to have or what peculiar and particular training they will have to answer to the sensitivity of situations that occur with Alzheimer's people and other cognitively impaired ones.
It says in subsection 7(1) that we must "comply with the standards and procedures established by the regulations." This is what the advocates and assessors are going to have to do, but there is nothing along with this that suggests who these people are going to be, how they are going to be regulated or how they are going to be evaluated. One of the things that really surprised me throughout all of these bills is that there was no suggestion of evaluation for any of these people and how they would operate within the community.
Will the same standards apply for volunteer advocates as for paid advocates? How do these fit in together? Certainly that is what you have been hearing from these people. One of the major things advocates are supposed to do is help families or persons who are vulnerable bring about structural changes. This is why we have a real concern about older people, particularly older people with cognitive impairment, being included with disabled people who may be able to think and speak for themselves, because they will not be able to do anything about structural changes. Again, we need people to be able to speak for them, because many structural changes need to be made on behalf of these people.
My biggest concern about the advocacy program is that it seems -- I do not want to be too harsh on you or on the legislation -- to have become adversarial rather than friendly. I understood that this was a social advocacy, not a legal advocacy. We seem to have put aside O'Sullivan's report, You've Got a Friend. He wrote a lot about what advocates should really be. I think that has been lost completely in this new material we have received. If we are going to use professional or paid advocates for people with diseases or conditions like Alzheimer's in institutions, they are going to have to be friends, they are going to have to be people who have some contact with these institutions before the occasion occurs in which an advocate is needed.
Old people generally are rather on edge about strangers coming in and telling them what to do or advising them about anything. I think we have to look at two different methods of using paid advocates, because you are not going to have enough to serve everybody, and that they be a special kind of people for persons with Alzheimer's and others of a like kind, that they be friendly advocates who come in and visit and become known to people before they are needed, where there are no informal advocates in place, and that they be available to families.
We talk a lot about families of small children. They may be very vocal about what happens to their children. Old men and women taking care of an old man or woman are often quite outside the legal or adversarial system and do not know how to advocate on their own behalf for the person who is vulnerable. This is, I believe, a recommendation that should be made by everybody, that some of these advocates should be able to help families know how to work the system. I do not mean it in that way, you understand; I am being a little harsh about that.
I am very concerned about the training and qualifications of the advocacy people. I am also concerned about their going into institutions and more being said about how they have permission to go in whenever they want to look at records. I know some groups of vulnerable people are very keen on this. In dealing with older people, we are not at all interested in that. We feel there might be a possibility of reprisals from people on staff against the person. In speaking about that, all the acts seem to have talked a lot in the preambles about looking after people, and particularly older people in the community as well as in institutions, but I am afraid you lost track of that in this legislation before you came to the nitty-gritty. It always seems to be in the institutions.
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Since we have been advocating for a long time with people to say that institutions are not all bad, and may be a better place than a home for some people, it is unfortunate if the idea that comes out to the general public is that we are trying to get people in institutions and institutional care givers, because that is not quite fair. I think we have to be very careful about that when we are talking in what I see as a very adversarial way. The power of advocates has to be looked at to limit it, because we always have to keep in mind that they are social advocates.
If I may now go back to my general comments and the definition of "vulnerable," which I do not think is adequate, when it names generalized groups I think we have to remember that older people are not a homogeneous group by any means and that we have to specify what we mean by a vulnerable older person. I even heard a speaker here lump all older people together, saying "old people." I am old and perhaps I am senile, but I am not demented. We have to be very careful that we are not saying all old people are vulnerable, because it simply is not true. That comes into all the things we are talking about in these acts on consent to treatment and substitute decision-making. We must remember that some old people, very old people, are quite capable of making their own decisions. We must not become paternalistic about this.
I think almost everybody who has spoken to you in the last couple of weeks has spoken about the inability, from our point of view as consumers, for all of these bills to come into being at the same time. It is absolutely essential that the Advocacy Act be passed first so that all of these people can be trained and commissions and advocacy groups can be put into place before the others are even attempted. I would even like to see some of this being projected and tried out in certain places in the province to see how expensive it is going to be. It seems to me this is going to be an enormously expensive operation.
Another thing about older people is that in the preamble it quite definitely states that these acts cover "seniors," whatever a senior is, and people with Alzheimer's disease, but that is the last you hear of them all through the act. They just seem to have been lost from then on. I notice that palliative care and advocates for palliative care people are not mentioned at all.
There is a great deal said about assessors and assessments, but it is not clear to me who these assessors are going to be, how they are going to be trained and how they are going to explain to people who do not understand a simple sentence, a simple word -- how they are going to explain to these diminished people what is meant by an action that is to take place. How can these people possibly be trained to look at all these areas?
The assessment is to be done by health practitioners. Please tell me what a health practitioner is. Is it a doctor, a health care aide or somebody in between? It seems that the act is suggesting that almost anybody can make an assessment, yet if you reread Weisstub, you will see that he said, "There is no reliable generic diagnostic test of capacity to consent." That is after a thick book and many years of working at trying to figure out what capacity was. We are referring of course particularly to vulnerable older people and more particularly still to Alzheimer's people.
My particular concern in all of these acts is the power of attorney for the person. Some years ago, back in 1982-83 I was involved as the beginning person in getting a change in the Powers of Attorney Act for estates back in 1982-83 so that that power became a continuing power and not one that could become null and void when a person became incapacitated. So I am really surprised and disappointed that now you are considering, which I think is a wise thing to consider, that this power for the person be linked to mental capacity. I see no reason in the world for this to be.
If a person gives a donation of a power to his family or someone who is close to him to make decisions or consent to care on his behalf, he did it with the full ability of his own mind to make this decision. Why you would have to wait until an emergency to get this power validated boggles the mind. It denies the right of the person to make this decision. It may in fact deny their civil rights under the charter, because as it stands now it says that I can give to my daughter a power of consent to speak for me in points of care for my person, but until my daughter or my son sees that I have really gone bonkers -- and they are probably more likely to see it than anybody else -- then they have to apply for assessors to come in and assess it to see if I am capable. I may be having a really good day and they will say that of course this person is capable. That is the way this thing operates.
It is not always capable or incapable. It is up and down and up and down. That has to then go to the public trustee and guardian to be validated, to say: "Now this woman has lost her marbles completely and this can go into place: The other person can make a decision." It is arrant nonsense, my friends, because in this time -- what time frame are we looking at? One month? Six months? In all this time I may go in and out of capacity, have a great many physical disabilities and need urgent medical treatment, yet my daughter is not allowed to make these decisions even though I gave her this permission.
It seems to me that you have erred in trying to protect the person too much. I suggest that this act be implemented as soon as possible with validation immediately. As long as the person stays compos, he can take this privilege or power away from the person. But to have this validation take place at some future time and assessors who do not even know the person come in just does not make much sense. It would be so difficult for families to cope with this, to even understand what the legislation meant, that I predict they just would not bother going through it. They will continue as they are, muddling along the best way they can. If they do go through with it, it is going to cost them a lot of money. The government is prepared to pay for it. As a taxpayer, I do not want to have to do that. It is just going to be a more expensive procedure than a family now going to court to get a committee, and that was the one thing we hoped for, that this would be a simple operation.
I will just make a quick comment about section 76 in Bill 108. It orders a person to submit to an assessment. Those seem to be very strong and harsh words. I read this over many times and I simply could not find where it explained to my satisfaction at what point you would have to be when someone would come and order you to submit to an assessment. I do not know whether this means when you are in a situation of abuse. Abuse is also mentioned in older people but nothing much is said about it. I hope it would include help for people who are being abused without making it mandatory that abuse be reported, but that some mechanism be set up so that different regions of the province could deal with abused older people satisfactorily and that there be some place for them to be moved to out of their home or that the abusing person be moved out of their home.
I am not going to say anything about guardianship, although I have a lot of opinions about it, but you heard from Melane Hotz last week, a woman whom I have been on many ad hoc committees with. She really spoke for me and others in this matter and knows a great deal more about it.
The one other matter that seems perhaps too simple to speak about is information and education. This is an absolute must at your earliest convenience, to find some simple way to get information out about these acts, how people can access them; an advocate, for instance. We have said a lot about that today. All older people should receive some information, a small pamphlet written very simply and sent out with their old age security cheques or something like that. They should also be printed and posted in every institution that has older people in it in Ontario. By sad experience, although I have tried to build up care facilities, they very seldom inform families and the people living there about such things as the redirection of health care, for instance.
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This is a reiteration of what I said before. Although in the preamble it states that these acts will refer to people in the community and in institutions, that seems to also have been lost track of as the pages go on. In Ottawa at least, the number of institutionalized older people has dropped from almost 9% to just over 5% in the last six years. So there are a lot more vulnerable people in the community than in institutions, although that may be where your paid advocates would have the greatest work.
Thank you very much.
Mr Kwinter: Mrs Honeyman, I just want to congratulate you on your presentation.
Mrs Honeyman: Thank you. You are just being nice to me because I have a fancy hat.
Mr Kwinter: No, I am being nice to you because I think you make a lot of sense. Through personal experience I have lived through many of the concerns you have expressed, and I agree with them. I just think you should be commended for taking the time to present a very thoughtful and very practical presentation. I just wanted to let you know that.
Mrs Honeyman: Thank you. I appreciate that. I always think that members of the Legislature are just like me. They need things simple or we do not understand them. No insult intended, but just because this is what we really understand. This is what really distresses me about all of the work that has been put into these acts. They are so convoluted that even people who have been working on it since before it was called the Fram report -- I had to read it about five times before I even understood what some of the material meant.
Mr Poirier: Like Mr Kwinter, I think it is extremely important that somebody like you, who is an advocate, who is working close to the people who are supposed to be served by this Advocacy Act, came forward. What you saw in the act and the complex nature I really appreciate. I was listening with much interest to what you had to say because we are here to make sure that the principle of the act, when it finally becomes an act, translates into something that is graspable, something that you have more answers to than questions on. So I am glad that you came forward, and it is not because you have a hat -- I love your hat; it is great, by the way -- but I am glad you came forward and --
Mrs Honeyman: That is my equality hat, you see: a man's derby with a woman's feathers on it.
Mr Poirier: All right, good. We are birds of a different feather ourselves so we appreciate it. Thank you very much.
Mrs Honeyman: Thank you very much.
Ms Carter: You have raised a lot of good points here, and I just want to comment on a few of them.
First of all, you worry that the qualifications and education of the advocates are not laid down in the act. I think that was a deliberate omission because the commission is to be at arm's length from government and we wanted to leave a lot of that kind of decision to it. So what we have here is provision for the setting up of an advisory committee which will select the people to be on the commission, and then they will go on to make a lot of these decisions. Under section 15, which says who is to go on this advisory committee, we have paragraph 15(1)3, "organizations representing persons 65 years of age or older," and we also have paragraph 15(1)6, "organizations representing persons with a neurological disability, illness or infirmity such as autism, Alzheimer's syndrome or traumatic head injury."
Having said that, we did have a delegation here previously that suggested that more people aged 65 or over should be on this body, although they are already provided for. My answer to that, speaking as somebody who is not 65 -- but I am not that far off it, either -- is that you said yourself that older people are not a homogeneous group, and a lot of them, after all, do not have any kind of disability or vulnerability. Since we are trying to define those who are vulnerable, to say that older people as such have a place in that category could be seen as an ageist concept, saying that just because people are older there is something wrong with them. Do you agree with that? Does that not make sense?
Mrs Honeyman: Oh, absolutely. I just want to make very clear that old does not equal vulnerable and that we must be very sure. I read that part over again and again and I hoped it meant what I think you meant it to mean, but I am just afraid that -- what shall I say? -- more outspoken groups of younger disabled people etc may be pressuring the commission to go on these advisory boards and that the other people to speak for the cognitively impaired, the truly vulnerable older people, will be forgotten.
Ms Carter: Except that older people belong to all the other groups just as much as any other age group does.
Mrs Honeyman: They may.
Ms Carter: Yes.
Mrs Honeyman: I do not care whether it is young people speaking for the cognitively impaired as long as there are people on there who are concerned about that particular group, who are perhaps the most vulnerable. I was interested to hear the doctor from the Hospital for Sick Children. Old vulnerable people, particularly with Alzheimer's or any other dementing illnesses, are almost the same to look after as children. It is almost the same thing that is occurring. Do you see what I mean? There usually is somebody to speak for them, but not very well informed, so they need some help.
Ms Carter: Thank you. You also commented that the guardianship procedure under the new legislation will be more trouble and more costly than the present system, so I would like to call on Stephen Fram to comment on that, please.
Mrs Honeyman: I did not say it about guardianship; I said it about substitute decision-making and particularly the power of attorney for the person.
Mr Fram: Hello, Mrs Honeyman.
Mrs Honeyman: Hello.
Mr Fram: We have corresponded over the years through various ministers. On the validation procedure: First, I want to make it clear that under consent to treatment, although it is unclear and we are looking at making it clearer in revision, when the health practitioner finds that the person is incapable the attorney for personal care will be able to make the decision without any validation.
The second part was that validation is really the defining of someone incapable of making a decision. It is a great concern some people have had that a power of attorney for personal care should not become a trap; that is, the very existence of a document like that will lead care givers to start talking to your attorney instead of you. You know very well that the tendency is to talk to the person standing up and not the person in the wheelchair, even though the person in the wheelchair may be very capable of telling you where to go --
Mrs Honeyman: And they do too.
Mr Fram: The idea behind validation is that we should have an objective assessment of a person before that comes in as an ongoing power.
Mrs Honeyman: I cannot disagree with you more. You obviously know that. I understand the problem of the legal community on this. If it stands the way it is written it is just going to be a bonanza for lawyers, because if families get involved in it, it is going to cost them money to bring assessors down if they have not named assessors in the power. It may rebound to a bad result for the person who has given the power because he or she may have ups and downs. You know as well as I do that they are not always cognitive, they may have bad times and, as I said in my presentation, they may go through a period when they definitely need that person they have given the power to to make a decision for them right then, but if they have to write off for somebody to come and validate it, the person may have recovered from that situation and have not been treated properly. I find that very difficult.
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Mr Fram: I think that goes to the first issue. On the consent to treatment situation, it does not need to be validated. It is only where the power is going to be ongoing. It is consent to treatment that usually requires a quick answer. On the other situations, you can afford to wait till a good day for a decision. There are not that many decisions that have to be made in people's lives that other people have to come in until it is an ongoing situation, other than care decisions, medical decisions, dental decisions, those kinds of things that are addressed in the Consent to Treatment Act.
Mrs Honeyman: Then you, in your usual eloquent way, have simplified this so much that there still does not seem to be any need for validation, because almost everything that came along, according to what I am hearing you say, comes under consent to treatment.
Mr Fram: Right, except for things like a transfer in facilities, moving out of the community, the big stuff.
Mrs Honeyman: Yes.
Mr Fram: That is really what we had in mind.
Mrs Honeyman: So you are really talking about moving them into a care facility out of their own home against their wishes. But people are doing that all the time now.
Mr Fram: That is why we want to make sure that at those points people are not just pushing them around.
Mrs Honeyman: I have a better opinion of people than you do.
The Chair: Thank you very much. We cannot get into too much of a debate on this.
Mrs Honeyman: I guess at that we will leave it, but I thank you for your clarification.
Mr Wessenger: I do not need to say anything except to confirm that what Mr Fram said is correct: the power of attorney for personal care does not need to be validated in order for the health practitioner to act on it.
Mrs Honeyman: For the consent. Oh, I recognize that, but nevertheless I am still very confused about the other. I hope it does not happen if it is going to be expensive for the people.
Mr Poirier: One of the first things you mention, and I got so sidetracked by what else you were saying, that the need for training -- I agree with you that with voluntary people and all the good faith and all the excellence of the work surely there must be some need for training.
Mrs Honeyman: Absolutely.
Mr Poirier: Would you be able to expand on that? Have you thought about what might be necessary?
Mrs Honeyman: I can only come to the simplest thing I know about: the advocacy we do with Alzheimer's and have done since we started the society 12 or 13 years ago. We advocated on what we had learned with people with Alzheimer's themselves. We knew how to help other people deal with the people and advocate with the government and other institutions for the best care possible for these people, including legal care and the change in the power of attorney to be a continuing one. So I am questioning not the training for specific groups like that, which learn it from the ground up and enhance it by reading and so on, but for the professional, paid advocates, how they are going to learn that and who is going to teach them and what qualifications they have to have to begin with to be able to deal with such a sensitive issue.
Mr Poirier: Do you think there would be a need for further education of the volunteer? Could that be beneficial to the volunteer? Do you see it as optional or what?
Mrs Honeyman: Yes. If you are going to set up a good training program for the professional advocates, I would hope that would be sent out to every organization that did advocacy on the simplest level, as we do it, or the middle level like these people from Windsor do it. They should know what you were planning and perhaps they could feed in to you some things that would be helpful.
Mr Poirier: So the volunteers would have a choice to take some, if not all, of the courses for the training of the professional ones, right?
Mrs Honeyman: Yes, right; that is, if you get a good training for them.
Mr Poirier: Okay.
Mr Malkowski: Thank you for your presentation. You mentioned that advocate services would be only for institutions, but I just would like to clarify that. I want to assure you that the Advocacy Act does provide advocacy for vulnerable people who are in the community. It is not only for people in the institutions.
Mrs Honeyman: Thank you. I understand that.
The Chair: Ms Honeyman, on behalf of this committee, I would like to thank you for taking the time out and giving us your presentation today.
Mrs Honeyman: It has been a pleasure to meet you all. Thank you very much.
CANADIAN MENTAL HEALTH ASSOCIATION, KITCHENER-WATERLOO CHAPTER
The Chair: I would like to call forward our next presenter, Loren Calder.
Good afternoon. I just to remind you that you will have half an hour for your presentation. The committee would appreciate if you would keep your remarks to about 15 minutes to allow time for questions and comments. As soon as you are comfortable, could you please identify yourselves for the record and then proceed?
Mr Calder: I am Loren Calder. I am a parent living in Kitchener-Waterloo and I am a university professor. I am here to talk about the mental health aspects of the proposed Advocacy Act, Substitute Decisions Act and Consent to Treatment Act.
I am supported in my presentation by a consumer, John Martin, a university student, who has recovered from a very serious active mental illness and some recurrences. I am also accompanied by Ken Parsons, a parent and retired school teacher who has been an advocate for his son, who has suffered from severe mental illness for 20-plus years.
We have prepared a presentation that we have agreed to. I intend to read it for you. These are recommended changes to Bills 74, 108 and 109. They are unanimously supported by the Kitchener-Waterloo Family and Friends, an affiliate of the Canadian Mental Health Association's local chapter.
We, the undersigned, are members of a subcommittee of the advocacy committee of the local chapter of the CMHA who have been assigned the task of analysing the mental health impacts of Bills 74, 108 and 109. We are speaking today as the parents of individuals with severe mental and emotional illness -- schizophrenia and manic-depressive disorders -- or individuals whose condition has been controlled by medication, psychotherapy and psychosocial treatments.
We note that decades of investigation by research scientists and practising psychiatrists have failed to produce precise knowledge about the causes and treatment of this catastrophic illness. We feel little would be gained by our attempting to define these illnesses here. On the basis of years of personal experience, however, we can categorically state that these illnesses are real and that their most horrendous characteristic is that they deprive their victims of sound reason and judgement in those phases of the illnesses marked by acute psychiatric disorder or psychosis.
Many victims in this phase of their illness lack insight and are completely unaware of the acuteness of their condition. In such a phase they are very vulnerable to serious bodily harm and even death, precipitated by their incompetence. They cannot provide even elementary care and maintenance for themselves and are often involved in potentially violent confrontations with the police and others. Because of this loss of judgement, we feel significant changes must be made to the proposed legislation. Our recommended changes are detailed below.
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Bill 74, the Advocacy Act:
1. The act's broad definition of "vulnerable person" needs to be amended to take into account the loss of reason and judgement which characterizes victims of severe mental and emotional illness in their acute psychotic phases.
2. The act's assumption that higher-functioning consumer-survivors can adequately represent the interests of the most severe victims is flawed. It should be amended so that parents who are primary care givers and professionals are actively involved in the advocacy process, especially at the level of the Appointments Advisory Committee and the Advocacy Commission.
3. The act's failure to require that professional advocates will have a thorough understanding of severe mental and emotional illnesses needs to be remedied. Advocates must also be required to inform their clients of the possible consequences of failing to accept treatment, and they must be held responsible for the advice they give, as are other professionals.
Bill 108, the Substitute Decisions Act:
1. The act fails to provide a clear definition of "competence."
2. The act fails to provide clear guidelines for the determination of competence.
3. The act is ambiguous on the role of advocates in the determination of competence.
Comment: These three deficiencies in the act put barriers in the way of obtaining urgently needed treatment in crisis situations. In combination they have the effect of legislating psychosis and of potentially causing serious harm to the mentally ill. Furthermore, the provisions of Bill 108 are incompatible with those of Bill 109, specifically with regard to an individual's consent to treatment, since apparently an individual's decision made when competent may be rejected in favour of a decision made by the same individual when incompetent.
Bill 109, the Consent to Treatment Act:
The act extends the procedural protections concerning a patient's rights to refuse all medical treatment in the name of protecting individual rights, in spite of evidence based on current treatment procedures and scientific research that in most cases prompt and appropriate treatment improves competency and autonomy. To fail to provide such care is to fail to recognize an individual's most basic needs.
That completes the reading of our written submission. I am not sure of the time consumed for that.
The Chair: That was about seven minutes.
Mr Calder: Is there time for each of us as individuals to make separate and individual presentations? My colleagues would like to say a few words.
The Chair: We are quite flexible in this committee.
Mr Martin: I am John Martin. I am a consumer. I am not a chronic schizophrenic. My condition would be schizoid-affective. That means most of my life my illness is more on a feeling and emotional level as opposed to a thought and thinking disorder, but I do have the potential to go schizophrenic. I did have one severe schizophrenic breakdown where for four weeks I wandered the streets hearing voices and doing all sorts of weird things until I finally walked into a strange apartment, the police were called and I was taken into the psych ward against my will. I resisted the police at first, so this was a non-voluntary treatment. But after three weeks in the hospital and with intervention, I came out of that psychosis and afterwards was very glad about that non-voluntary treatment.
I know the law does allow for the substitute decision-making act, but I think the definition of "competency" is too vague. I think I was very fortunate that after four weeks I got in trouble with the law and got prompt treatment, because research shows that the longer you are in a psychosis the harder it is to get you out of it. I got in trouble with the law after four weeks of acute psychosis and I thank God. It was providential that I did and that I got prompt intervention. I could have roamed in that psychosis for several years. If I had not got into trouble with the law I never would have gotten out of the psychosis.
The point is that if I ever go severely schizophrenic and psychotic again, I want you as a society to take me in for treatment against my will. That is the only sane, sensible and compassionate thing for you as a society to do. I emphasize that strongly. Anybody in his right mind will say that if he understands what happens to him when he is severely ill.
I had four other hospitalizations that were voluntary. I was not severely ill; I knew I needed help. It was in my acute psychotic-schizophrenic breakdown. The sicker you get, that is when you need help the most and that is when you are going to refuse help the most. That is the paradox of the right to refuse treatment. I do not want society to wait again to give me treatment against my will until I threaten to kill someone or myself or even until I get in trouble with the law. When you are severely ill you need protection against yourself, and society has to protect individuals against themselves.
I think there are signs that can be determined by a committee of a psychiatrist, a psychologist and a social worker, I would say, who can determine incompetence before you reach the point of threatening to kill somebody else or yourself, do property damage or even get in trouble with the law. That is the whole catch of how you define incompetence. Thank you.
Mr Parsons: There is not enough time to say the things I would like to say, so I will pick out just one or two points. I consider myself an advocate. I think I have put thousands of hours into advocacy for the mentally ill and I have every reason to. I have a son who has a mental illness.
It disturbs me very considerably that in the Advocacy Act the families do not seem to be very thoroughly acknowledged as an absolutely essential part of the care giving to the mentally ill. It also disturbs me that the professional health care workers seem to be disregarded.
I am the first to admit that there are certainly many gaps and deficiencies in the medical health system when it comes to mental illness, and I am aware from personal experience that not everybody acts very professionally or capably. That being said, though, let it also be said that the families cannot afford to do without the mental health workers and professionals. We need them and I believe they need us.
I also believe that the Advocacy Commission will need families to strongly support them. It disturbs me that in the legislation as I have seen it the Advocacy Commission is to ensure this and to provide that, but it is simply to acknowledge, encourage and enhance the families. I believe the family needs more input than that. I strongly feel that in the case of the mentally ill, the families should be taken into account a great deal more and should be represented on the commission rather than simply acknowledged.
As far as the professional care givers and the medical profession are concerned, I see that the minister may appoint advisory committees. It seems to me that this is not good enough. Please do not disregard all the advances made in medication and treatment in relation to mental health.
I just have a terrible feeling that there are some people, some consumers, who represent one extreme view regarding mental illness and are leaving out of account what I might call the silent majority. We have one here who is not silent, but there are many. I know one person in Kitchener-Waterloo, for instance, who has been involuntarily hospitalized 18 times and he tells me he is glad he was. But I am afraid that viewpoint does not seem to come across implicit in what I understand in this legislation. Thank you.
Mr Calder: I think that finishes with our presentation, Mr Chairman.
The Chair: Thank you very much. Questions and comments, Mr Poirier.
Mr Poirier: I guess you realize you are not the first group that comes forward with that kind of concern. Thank goodness you do come forward and state it like it is and give the particular point of view that you have. You are quite correct, and I think the government members are very actively listening and we are also.
I do not know if you are aware that yesterday we had this young gentleman from Guelph who was describing and bouncing off his idea for him to be able to write a contract should he go off his medication or something happen where something goes wrong and he has to be brought in somewhere, picked up by the police or somebody else, and that his contract would state, "Even though I may tell you I don't want to take my medication, and even though I may sound rational or whatever, my contract says that if I am like that, something is not okay and here is the medication I would like you to give to me," and whatever.
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I think we were very open to consider that type of proposition to make sure that the current bills do not hinder, much less forbid, this type of thing happening, and that an advocate cannot come in there and say: "Well, the hell with your contract. You don't have to be here. You don't have to take your medication. Go home free. Collect $200 and don't go to jail." How would you react to that?
Mr Calder: We are concerned about the possibility that a decision made when the individual was competent could be set aside by an advocate because the individual is incompetent and because the advocate has been instructed by a set of rules to take the opinion of the individual, the victim, when last expressed to him. I think it is good that something be done to make sure that a competent decision takes precedence over an incompetent decision.
Mr Poirier: Of course.
Mr Calder: But that does not deal with the problem as I and my colleagues in this delegation see it. There are many victims of mental illness who have no insight into their condition, are completely unaware. Although this seems to be a violation of rights, something needs to be done to see that these people get treatment.
I have a son, for instance, who has been hospitalized 15 times in the last five years, who is only now, and I am not sure, beginning to grasp the fact that he has a problem, and who is now taking tentative steps to get treatment. I do not know if he will stay in a treatment mode or not. I know another individual, a colleague of mine of almost 20 years, a brilliant historian who has over the last 10 years slowly drifted into an acute state of paranoia. She still refuses to accept the fact of mental illness; she cannot accept the fact of her paranoia.
The result is that under the present legislation nobody can advocate for her; there is nobody who can act in any way in her support. She is going to end up on the street as a bag lady. The university has been trying for three years to provide her with a permanent pension which is provided for under our pension funds, but because she will not acknowledge illness she cannot access the possibility of that program.
Mr Poirier: How can somebody advocate for her, then? How can somebody legally and morally advocate for her, on her behalf?
Mr Calder: It is a real conundrum. I do not really know how to deal with it. I think we need some kind of review committee with the authority to make decisions in this case. As abhorrent as this sounds to the civil libertarians and the human rights defenders, I think we need some kind of judicial body that could override the will of the individual when mental illness is clearly the problem.
Mr Parsons: I was a high school teacher, and I am aware of a high school teacher in the same situation who has for years been disabled with mental illness, cannot recognize that he is disabled, cannot draw upon his disability pension because he will not or cannot acknowledge it. His wife has had to go out to earn her own living and has separated from him. She has found herself going around in what Dickens called the circumlocution office, going around and around and around and getting nowhere, and the man is obviously mentally ill. Incidentally, he is the son of a schizophrenic mother, but he cannot recognize his illness. I do not know. Personally I think this question of competency is just a can of worms and still is a can of worms in spite of the Weisstub commission. Let's try and put humanity, humaneness, before some of the these finer points of the law.
I sat and listened to a group of legal experts primarily, lawyers mostly, in Hamilton several months ago. They talked a bit about the Weisstub findings, and they seemed to think they were not any help to them. If that is a lawyer speaking, how much help is it to the families?
Mr J. Wilson: I very much appreciate your comments. I have firsthand knowledge of the illness of schizophrenia in my own family and the difficulties that poses for families. I am really asking this question to head off what the government is going to tell you, all the good things that are in this legislation. You have looked at the guardianship provisions of Bill 108 and the ability of the family, for instance, to get a full guardianship over an individual who has schizophrenia. Do you have any comments on that? It seemed to me, as legal counsel for the government has presented to this committee, that this may be an improvement over the existing Mental Health Act. Have you looked into that?
Mr Calder: I was talking with a representative of the mental health association just the other day, and the guardianship provisions were brought to my attention as offering an opportunity or the possibility for someone like myself to take and exercise guardianship and see that my son is provided with proper care and treatment. On the basis of this information, I think that represents a valuable contribution in the legislation.
Mr Martin: If I can make one comment about the Advocacy Act, I heard a doctor talking the other night about this same legislation. He said it sort of pits the advocate in an adversarial role, supposedly taking the view of the sick patient against the care giver, the psychiatrist.
I think it is unfortunate that the whole emphasis is the right to refuse treatment; it should be, when you are sick, the need for treatment. I do not want an advocate representing my views if I go severely schizophrenic or psychotic; I may want ludicrous things. I want the advocate to speak on my need for treatment and encourage me to get treatment, not to be put in an adversarial role.
We are setting up here another crazy adversarial situation in society, the advocate against the psychiatrist instead of both working together; the right to advocate for the rights of the vulnerable, to be protected against yourself, to get treatment when you need treatment and early intervention. I said previously that the record shows that early intervention empowers people, but first you have to bring someone out of an acute psychosis before an empowerment process can begin. I think advocacy is not just the rights of the patient; the needs of the patient should take priority even over the rights of the patient. When you are severely ill, your needs take priority. I know that from experience. Your need for treatment takes priority over your rights, what you may say.
Mr Parsons: I would like to recommend that the members of the committee read the article in the Canadian Medical Association Journal in October called The Right to Remain Psychotic, in which two mentally ill people were kept without proper treatment for five and one half months in one case, seven months in another, because they went through all the review and appeal processes.
I put it to you that there is nothing as far as I know, as far as I can see, in this legislation to speed up the legal processes, and there needs to be. I do not believe that somebody who is allowed to be psychotic for five and a half or seven months is getting the proper treatment; we would not allow it to happen to a dog.
Mr J. Wilson: Provide that to the clerk, sir.
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Mr Parsons: I draw it to your attention. It happens to be two psychiatrists from Queen's University and they are talking about a facility within the prison system. They make the point that similar things are happening elsewhere, outside the prison system; some of us know that they are. Nothing in this legislation, as far as I know, guarantees that those incompetent, psychotic people are going to have the legal processes dealt with promptly. That needs to be attended to.
Mr Calder: I want to comment on the question of guardianship. That is potentially a good long-term solution, it seems to me as a parent, but it too is slow to implement. What we have needed as a family is instant help, and instant help has not been available. As a family we have stood by for eight and 10 weeks while we have watched our son slip into an acute psychotic phase. In that phase he is extremely paranoid. He is extremely hyper, wandering about day and night, unable to eat, unable to function. He gets increasingly incapable of functioning. He can start off providing himself with meals, and he is quite good in those kinds of tasks. He is, incidentally, an extremely bright man of exceptional ability. In the run-up to these psychotic phases he can still solve complicated mathematical questions, but he cannot make sound decisions about daily care and he becomes increasingly incompetent.
We have not been able to get him help until he crosses over the line, until he is threatening to injure somebody else or is threatening to injure himself directly, either committing suicide, walking up the 401 or wandering off into the night when the temperature is 22 degrees or 30 degrees below freezing. This has happened. What I think we need as parents is some kind of provision that can make for immediate care in times of crisis. He certainly does not recognize his own critical state during these phases and certainly denies up to the very last that he needs hospitalization, that he needs help. In the meantime, the family is drifting day by day into greater danger.
I am 62. I feel I am a very well man, but in his last crisis he and I ended up fighting in the hallway over a deliberate provocation. It is all right, I won the tussle. We called in the police and he in fact ended up -- well, that is another story. But you see the kind of situation that can develop. He ended up assaulting a police officer and was taken into custody, charged with assault.
Mr J. Wilson: Just to let you know where I am coming from, I understand that situation exactly, as you describe it.
Mr Calder: We need assistance in times of crisis, and under the present legislation we cannot get it. The advocates always standing in the way of getting long-term, effective treatment do not assist the achievement of that goal.
Mr J. Wilson: I have made it clear in this committee that my thoughts would side with you. We have had a lot of testimony, though, that would tell us that, no, advocates do not do that and will not do that. It is a tough one. I have also spoken at length about -- I am in opposition so it is easy for me to say, but I expect the government's hands are somewhat tied by the Charter of Rights in this legislation also. I would never have voted for it. I do not belong to the party that voted for it. It is that the individual is supreme. Even if we were to concoct some model whereby we could have significant input from the families in terms of emergency treatment I am not even sure it would stand up in today's court. We are in quite a bind, I think.
Mr Parsons: Same thing as a "notwithstanding" clause.
Mr J. Wilson: That is true. Premiers cannot seem to agree on anything these days.
Mr Wessenger: Thank you for your presentation. I can certainly understand your frustration in dealing with the problem of the schizophrenic situation and treatment. I know how frustrating it is. However, I think some of the statements made in your brief are not quite accurate. You state that an individual decision made when competent may be rejected in favour of a decision made by the same individual when incompetent. That is not true, because under the new Consent to Treatment Act it is clear that if a person makes a power of attorney for personal care, and he is incapable, the treatment as set out in the attorney for personal care is to be followed.
It is also clear in law that if a person is incapable, then the substitute decision-maker does make the decisions. It is not true under law, either existing law or proposed law, that an incapable person's decision overrides a decision made when he was capable.
Mr Parsons: We put the word "apparently" in, if you look, because we were not sure; we are not lawyers. That is why we put the word "apparently" in, because it was written in such a way that we were not quite sure.
Mr Wessenger: I can assure you that it is. I agree with the frustrations in the area of determining capacity. I agree that is a difficult area. If we go to the other comment, saying the act extends the procedural protections, I would suggest to you that the act contains nothing that is not already existing in the Mental Health Act. We are advised by our counsel that in fact under this act it is easier to admit patients to hospitals than it is under existing law.
We asked for some of the transcripts to be made available of previous discussions in this regard. I would ask that they be made available to you.
Mr Parsons: May I respond to that? Under the existing law, theoretically we should be able to get people into hospital when they are incompetent and a risk to themselves or others. In practice it does not work like that. I was looking today at some figures showing that in our local hospital a few years ago, out of 870 admissions in that hospital in the course of a year, two were involuntary. This is way out of line, incidentally, with the rest of the province.
Why is that? I can assure you from bitter personal experience there is more than one in 400 or so who needs to be admitted involuntarily. I can assure you. Why is it? Part of the reason is because of the legal hassles the psychiatrist would rather not face. That is one reason. Another reason is that not one general hospital in the province, according to Dr Heseltine who wrote a report a few years ago, has a secure facility to handle -- not one of them. We are not talking about the 10 provincial psychiatric hospitals, just the general hospitals. In other words, they apparently have not got the security they need to handle some of these people, so their families are left --
I know of a gentleman 84 years old with a son almost 50 who is very disturbed. The old lady, his mother, has had a stroke. They live in an apartment. He was taken to court before Christmas because he was threatening tenants, this fellow. He was admitted, yes, and they held him for seven days and they turned him loose again. That fellow has an axe in his apartment and is a time bomb waiting to explode. That is a situation we face, and many of us face. Then the victim of a negligent mental health system will be blamed.
The gentleman who is believed to have killed that young lady in Burlington was 30 days in the Clarke Institute. He asked to be retained, kept there, this Mr Yeo. They turned him out and two people, three people counting the man himself, died. That is our mental health system. It is not acceptable to the families who have to deal with it. We are not equipped to run psychiatric boards. My wife is going to be 73 shortly. I am not equipped and she is not equipped to be on duty 24 hours a day.
This question of competency is a very real thing to the families. We ask you to consider the families a lot more. We are the front line. We are the care givers. The professionals say they are in the front line. Not so. It is the families. We want the best for our relatives.
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Mr Winninger: Thank you again for your presentation. Having served on the local board in London of the Canadian Mental Health Association, I know the important role you play. I am not unsympathetic to your concerns in a general way. I know my colleagues want to speak as well, so I am going to be very brief and just address your points in regard to Bill 108. You suggest there is not a clear definition of competence and the act fails to provide clear guidelines for the determination of competence.
If you can find a better way of expressing incapacity than we have done in section 46 I invite you to submit a more detailed proposal for that, but certainly the test for incapacity for personal care is set out in section 46. It is referenced in section 50 when we are dealing with validation of powers of attorney for personal care. It is referenced again in section 55 when we are dealing with court-imposed guardianship.
As to what Mr Wilson alluded to in regard to the kind of remedy Bills 108 and 109 provide in the kind of situation you described, where the patient at the time treatment is offered may, because he or she is delusional, refuse treatment the patient may later have wished to have taken at the time, the court guardianship that can be ordered under Bill 108 places the care giver in a position to consent to treatment, as you know, on the patient's behalf, to consent to admission to a psychiatric facility, and it is all deemed to be voluntary rather than involuntary.
Your concern was that it takes a lot of time. That is why section 59 is in the act. For urgent cases you can apply for temporary guardianship to achieve that very same purpose. There may be better ways of expressing the legislative intent. If you have some precise suggestions, let me know, but I think broadly the mechanism is there not only to serve the best interests of the patient but at the same time to safeguard that patient's integrity and right to self-determination.
Mr Parsons: There is no reference, as far as I know, to what we all know of if we live with the illness, an ongoing process of deterioration. That should be taken into account. Competency: I defy anybody -- King Solomon himself could not really be clear. I have asked one of the best psychiatrists in Ontario how much of my son's actions is he responsible for and how much is he not. He did not know. The best psychiatrists I have come across are the ones who say, "I don't know." Nobody in this room or anywhere in this province can really define competency accurately.
What is not taken into account is this process of deterioration. The care givers, my wife for example, could tell you when my son is in need of care. Thank goodness he is at the stage now where he knows it himself and he goes and gets care. He is lucky, because some of the ones I know who need care, they know it, they go to the -- and they are turned away. They get it both ways. They cannot get in because of the restrictions of the mental health legislation. When they go voluntarily, they are turned away. It is a catch-22 coming and going. The families are the ones who are taking the impact. This province is going to have any number of dreadful situations on its hands as people get older. We cannot indefinitely carry what we are expected to carry.
Ms Carter: I have to say that it seems to me you have misunderstood in a very profound way the intent of Bill 74. The whole point and thrust of that bill is that the advocate will go to the vulnerable persons themselves, the consumers, and will find out what their wants and wishes are. The advocate does not make any judgement. They act on those wishes. By definition, this has to be somebody who is competent enough to know and express his own wishes. So I suggest that somebody in an acute psychotic phase would not be involved in this. Also, I think your request that professionals and parents be on the commission is again a misunderstanding, because they are not consumers in any sense of this.
Having said that, obviously family and professionals are of vital importance in the lives of most vulnerable people and have a great deal to offer them. But there are exceptions. There are times when they can be part of the problem, and those are the cases the Advocacy Act is particularly targeting. There are people whose family problem may be part of why they are having mental problems. I am not saying in most or even many cases, but we have heard a great many submissions on this committee. We have heard very many points of view.
We had a young man yesterday who had found a medicine that suited him -- he was a schizophrenic -- and he said, "Please, can my wishes to have this medicine forced upon me when I say I don't want it be respected?"I would see an advocate as going along with that.
Contrarily, there are people whose experience with medication and treatment have been so horrendous, certainly from their own subjective point of view, that they also have a right to say they would not want it.
I have a question for you. You say advocates must be required to advise of the consequence of failing to take the treatment. First, is that not the doctor's job to say to them what the treatment is going to do to benefit that person? And what about the doctor's job also of explaining what the side-effects and the not-so-pleasant consequences of taking that medication or undergoing that treatment might be as well?
Mr Parsons: How do you know a doctor is going to be involved?
Ms Carter: If medication and treatment are being prescribed, obviously.
Mr Parsons: The doctor has probably already told the patient, "If you don't take this, such and such will happen." The patient, because he is delusional, because he is irrational, because he is out of his mind, because he lacks insight --
Ms Carter: But I am saying this should hopefully be done when the person is in a lucid state.
Mr Parsons: But you see, your problem, madam, is that you, like me I think, have never been out of your mind. It is unbelievable if you are a rational person. You are logical; you would not be sitting there otherwise. It is the most difficult thing in the world to put yourself in the place of some --
Ms Carter: Could I just butt in there and tell you I had a sister who killed herself with her medication.
Mr Parsons: Yes, but that does not mean you have been able to put yourself in the place of somebody who is out of her mind. I find it extremely difficult, even after 20 years or so, to understand the way my son's mind works. You cannot explain things to somebody who is completely irrational as if he were rational.
Mr Calder: We think an adversarial situation is being set up here in which an advocate is going to take the side of the patient who is, as we emphasized right at the beginning of our presentation, not of sound mind and judgement, over the assessment of a health giver, a psychiatrist, a parent, who can see the deterioration in the situation of the victim etc. The advocate seems to be required by the legislation to act in the interests of the victim as expressed by the victim. We think the advocate, in these circumstances, should be well trained in the effects and characteristics of, and he or she should have a good understanding of the effects of the illness when he or she is advocating on behalf of that individual and so should advise the individual of the consequences of refusing treatment. That is why we have put it into our brief. That reinforces what the doctor is saying, of course, but it is probably in the best interests of the victim.
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Ms Carter: But you have also said that it is very difficult to define the point at which a person ceases to be competent, so I think we have to be very sensitive to both sides of that line, that sometimes a person may be expressing a wish that is not entirely sane to refuse treatment or whatever, but then we could err on the other side and force treatment on somebody who has a rational subjective reason and desire not to undergo it.
Mr Calder: I know that treatment is difficult nowadays. This is not a properly understood subject, as we indicate. Treatments are not going to be regularly effective, but in my experience, it is not good to have a psychotic individual like this wandering around on the streets, not taken into any kind of protective custody whatever.
Ms Carter: I do not think anybody is suggesting anything like that.
Mr Calder: I guess one of the reasons why we are here is that the present terms of the Mental Health Act represent a serious barrier to treatment or to satisfying in any way the needs of a sick individual. The court system seems to be hesitant to act.
If I might exemplify it with the case of my own son, this summer he assaulted a police officer. He was arrested; he was taken into protective custody. The court did not want to deal with the real problem, which was a mental health problem. We thought it would probably recommend a treatment of some kind, or at least examination. What the court did was throw the case out. Our son then was on the street within two or three hours. He broke into our house. He represented a threat to the other members of the family. The police were called in again. He had a baseball bat to protect himself, so a SWAT team was brought in to take him into custody. Even at that point the local hospital was not sure whether he should be hospitalized or not.
What we are concerned about is the difficulty of getting treatment even under the present legislation, and this is where we come to the advocacy part you criticized at the beginning. We think that when the terms of reference of the advocates are set up, they must take into account the counsel of parents and of care givers who have been involved in these kinds of crisis situations for years now.
Mr Martin: Can I just make one comment? I do not claim to understand all the technicalities of this legislation; I will admit that. All I think is that it is too difficult to get severely mentally and emotionally ill people for non-voluntary treatment. You pretty well have to be either threatening to kill yourself or someone else or get in overt trouble with the law, and I think there are clear signs of incompetence before you reach that point. As I said, I want you as a society to take me for treatment against my will before I threaten to kill myself or -- I will repeat it again -- somebody else or necessarily get in trouble with the law. Next time I may not be as fortunate to get in trouble with the law in four weeks. I may go psychotic for several years and never come out of it. That is not advocating for vulnerable people.
Mr Malkowski: Thank you for your presentation. I think it is important information and beneficial for the members to hear.
One thing I would like to tell you from my own personal experience is that I had a best friend as we were growing up who was deaf and he became schizophrenic and he needed to go for treatment, so he was helped along in his process.
I have already worked at a group home for people who were deaf as well as schizophrenic. I have had that experience and I have seen that treatment does help the people to become stabilized. I have had training and I have had some very difficult experiences in that situation.
There is another story I would like to share with you about my friend who was schizophrenic. He was misdiagnosed as a schizophrenic and a psychiatrist forced him in for treatment. The problem was communication. Some situations are similar to this, where the patient is not schizophrenic but he is stuck because he is labelled incompetent.
Last week we heard from psychiatric survivors who shared their experiences of misdiagnosis as well. Not all of them, but some of them said this was a problem. My question to you is, how do we become accountable for supporting that group of people who really do not require treatment and have been misdiagnosed and have gone through that experience? Perhaps they are acting the way they are because of sexual abuse or other problems.
Mr Calder: I know it is a very difficult problem. It would test Solomon. It would test 100 Solomons, probably, but alongside of these people who have been mistreated by the system, there are those who are mistreated in a different way because nothing can be done to help them. They are forced out on to the street and die there, I guess, under the present legislation, as you have probably heard many times now, dressed in their rights.
I know clearly only of the experience of parents like ourselves who have a seriously ill child or sibling who cannot function as an independent individual in society in spite of being gifted in many ways and who might benefit, who probably would benefit, we feel now, from the kinds of treatments available. Advocates can speak for those people, just as we parental advocates speak for those people, to see that they are not abused by some malfunction of the system, a serious mistake by a psychiatrist about medications. I know these medications are kind of lethal weapons, or can be lethal weapons, but they seem to offer some hope for the treatment of people caught in a hopeless situation.
You know there are some, a third, who have one instance of psychosis. You know there is another third who function pretty well with present treatment regimes involving medication, psychotherapy and psychosocial treatments, but you probably know too there is another third -- and I think now, tragically, our son falls into this category -- who cannot be helped with medication, who cannot be helped with any of these things and whose life expectancy is limited -- bleak, at best -- because they are either going to end up on the street or they are going to end up in confrontation leading to violence with the police or some other type of authorities. It is a very difficult situation. You have to treat all, I think.
Mr Malkowski: Can I ask briefly whether you would be willing to agree that the advocates would be able to respect the vulnerable person's wishes to continue treatment if he wished to do so, for example, if it was a schizophrenic person who wanted to continue treatment, and at the same time respect that other people need protection from being forced into treatment because they have been misdiagnosed. They could fulfil both functions?
Mr Calder: Okay, yes.
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Mr Parsons: I would like to say that I think the Advocacy Act is probably admirable for many groups, because that act is not designed just for mental health. In Kitchener, on Monday of this week, we heard a Ministry of Health official say that the Ministry of Health does not consider that the Advocacy Act is a part of mental health legislation. Right? She said that very clearly. It will impact, nevertheless, on the mentally ill.
There certainly are cases of abuse among the mentally ill. My own son was almost killed with lithium treatment. He was not listened to by the doctor. My wife was not listened to by the doctor. It ended up with his having something called a thyroid storm that put him in intensive care. He looked like an Ethiopian famine victim. He has been permanently damaged with the medication, and that is just a tragedy we have had to live with.
Nevertheless, I know enough to know that most of these people need some medication. It needs to be monitored much more carefully, and yes, I believe there are cases where an advocate may be needed.
The family is usually the advocate, and we feel we are being pushed aside. We know our family better than anybody else, and in too many cases, families are pushed on the sidelines. Please allow a place, an input for the care givers. We are the primary care givers.
The Graham committee had the right idea. I see dangers in this legislation. The focus of Mr O'Sullivan and of Mr Graham in his report was on the consumer and the family both, and the families here are being pushed on the fringes, which may be in order for some of the other conditions the Advocacy Act is meant for, but I do not believe it is appropriate for many of the mentally ill.
Mr Martin: May I just make one point? If I am correct, if the advocates are not there to advocate for the incompetent, then we are straying totally away from the Graham commission. They are the ones who most need advocacy in the true sense for their needs.
I feel a loner, like many consumers. We have consumers speaking about the need for self-determination, the need for empowerment. That all applies when you are out of the severe stage and on the road to recovery. Like a child growing up, the older it becomes, it can have more self-determination. If you have mentally regressed, does a six-year-old have the right not to go to school? If you were psychologically mentally regressed to the level of a child, then the advocacy defeats its purpose.
When I become severely ill, when I become incompetent, then that is not even the role of the advocate. I agree I misunderstood that. If the advocacy is not there for the incompetent person -- they are the ones who need advocacy the most to encourage, and even the place for non-voluntary treatment, the need for treatment. Then we need to have a different view of the advocate.
The Chair: Thank you very much. We have to move on now.
Mr Poirier: Mr Chair, two seconds. I want to thank you for taking the time to come forward. Unlike another member of this committee, I do not feel like accusing you of not understanding the act. It is not a question of understanding or not.
The Chair: Thank you, Mr Poirier. Professor Calder, Mr Martin and Mr Parsons, on behalf of this committee I would like to thank you for taking the time out to give us this presentation.
Mr Calder: Thank you for giving us the time.
MARGOT HAMBLEN
The Chair: I would like to call forward our final presenter for the day, Margot Hamblen. Good afternoon. Please be seated. As you know, you will be given half an hour for your presentation, but the committee would appreciate it if you would keep your remarks to about 15 minutes and allow time for questions and responses. Could you please identify yourself for the record and then proceed as soon as you are comfortable.
Ms Hamblen: Yes. My name is Margot Hamblen. I am president of the Leeds and Grenville chapter of the Ontario Friends of Schizophrenics. I am here today to tell a bit about our own personal family problems and what we have experienced, and having listened to the portion I have been in this room for in the last half-hour, the story sounds very familiar. I am hearing it over and over and over again.
As the mother of a young man who suffers from a double whammy, that is, schizophrenia and addiction problems, I am pleased to have this opportunity to express my gravest fears about the current legislation of Bills 74, 108, 109 and 110. I know I am speaking for many other families as well because I often meet people with similar problems. I also read about it time after time in our local newspaper in the court cases column. I also know that a large number of prisoners in our penal system suffer from schizophrenia, many of them with the added problem of addiction.
Here is a condensed story of some of the hell our family has lived through. I hope it will point out the need for access to help for severely mentally disturbed people, usually schizophrenics, who are usually unable to recognize that need for themselves.
David first became psychotic in June 1981 at the age of 19. At the time, we attributed it to the effects of drug and alcohol abuse after having sustained a head injury two years previously. I might add, however, that for a year following his accident and rehabilitation he functioned and behaved without any serious problems.
He was admitted to Kingston General Hospital and was being treated for severe psychosis, but he ran away several times so he was transferred to the Kingston Psychiatric Hospital. However, the doctor at KPH discharged him a day later, saying that he could not certify him because of the Mental Health Act. The next seven weeks proved to be a living hell for the whole family, with his delusions, his tantrums, his fears that people were out to attack him, to rape him and trying to poison him.
Finally, after these seven weeks we got him admitted to the local general hospital for an assessment. However, on day four he ran away. We found him on the outskirts of the city of Belleville. He was transported by the police to the KPH, where he stayed approximately two months. Then, for the subsequent year or so, he lived in various places until he would be asked to leave because of his bizarre behaviour and/or his substance abuse.
At least twice he somehow managed to get down to Los Angeles, convinced he could make himself famous and rich with his guitar. After a few months there he would be flown back to Canada by LA county because he was in trouble with the law. He needed psychiatric care and he was not eligible for it down there. He had been in a state mental hospital there for a couple of weeks, I believe, for assessment on one or two occasions. At the time had also been prescribed medication.
I remember all too well one of the times he was flown back to Canada. I met him at Toronto airport after first arranging for a bed at KPH and an appointment with his doctor there. We were living in Belleville at the time. David said he did not want to go to KPH, he did not want the hospital, he did not need anything and there was nothing wrong with him. He started to get hyper before we got halfway there. As we got closer to Belleville on the 401, he attempted to jump out of the car. I really had no choice but to go right on into Belleville and let him out.
However, he found out there were no friends willing to accommodate him in his state, so he came to us the next day to get his ride to KPH. He stayed a couple of months. That doctor did certify him, but when discharged David did not want to stay in a group home. He wanted to be on his own. There was "nothing wrong" with him. In the past 10 years, David has never been able to handle himself and manage things on his own. With his problems it just becomes a disaster. It was not long before he was arrested again.
Once again we have a combination of his delusional behaviour, discontinuation of his medication, and alcohol use, which led to problems and charges that could only become more severe as the years passed. It reached a point where nearly every member of the police force knew my son. They recognized that he was sick and that he needed psychiatric help and they were sympathetic to our frustrations. If I had a dollar for every time a doctor or policeman has told me his or her hands are tied by the Mental Health Act I would have a nice, healthy nest-egg right now.
Because of our son's unwillingness to accept psychiatric treatment, he invariably ended up being arrested, charged, ordered for an assessment at KPH -- usually 30 days -- returned to court and then sentenced to the detention centre. This is the pattern which has occurred on average every 10 to 18 months. If the incident is not a major one, the KPH assessment is often left out.
Even when my husband and I could see some deterioration in David's mental state, as parents we did not seem to have an avenue to follow to get prompt treatment for him. I reached the point where I could usually predict with some accuracy when a crisis was imminent. David was not living with us at home at the time and I want to explain that right now.
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Unfortunately, instead of getting the psychiatric help he really needed he was being assessed and spending time in detention centres. I have lost count of the number of times this pattern has occurred, but I should mention that it has been frequently enough that the past nine or probably 10 years, now that we are in 1992, have all been spent in and out of psychiatric hospital for assessment and in and out of detention centres, all on probation.
For about two months prior to January 1989, we saw David getting more delusional again. We suspected he had gone off medication and was probably drinking again. I predicted the lid was about to flip. I wrote a note to David's local GP and I wrote a note to his lawyer and his probation officer saying: "Look out. Something is going to happen."
He would phone us with his delusional fears that people were coming to attack him or that some man or some woman had some men set up hiding in the backyard of where he was living and that he was waiting for them to attack him and so on. It was about 20 minutes after one of these calls to us, during which we tried to reassure him and calm him, that he was arrested for threatening his neighbour with a pitchfork. We do not know anything about this. I talked to him 20 minutes before, remember. Please try to imagine what it is like to pick up your local newspaper the next day and see on page 1: "Neighbour Threatened With a Pitchfork." There was no mention that this was a sick boy because the media people did not know that he suffers from schizophrenia.
Here we go again with the usual routine that I outlined a little while back. We never did get an explanation as to why he did not meet the criteria of the Mental Health Act to be certifiable. I remember writing to the Minister of Health at that time and asking if our system waits until the pitchfork pierces the heart before we can consider certifying him as involuntary.
Our interpretation of the Mental Health Act, incidentally, concurred with that of the crown attorney and David's lawyer. We all found the doctor's decision unbelievable when it was read aloud in the court hearing. I remember even the judge shaking his head in disbelief when the diagnosis, "chronic delusional-type paranoid schizophrenia," and the statement that he was not certifiable under the Mental Health Act were read in court. The judge wondered aloud why the mental health system kept shifting David back into the court system.
Perhaps the most positive thing to come out of that sentence, if anything can be positive about a very sick person being treated as a criminal case, was that David did apply for and transferred to the treatment facility at the Rideau Correctional and Treatment Centre in Burritts' Rapids. Here he had understanding and helpful counsellors and was seen regularly by a psychiatrist from the Royal Ottawa Hospital, whom he grew to respect. He even served a few weeks of his time in that hospital when they were afraid that he was getting a little too hyper and might not be able to be handled by the the staff at the facility. This doctor has continued to see him in Ottawa, where David has been for nearly a year. His probation officer there is a caring and helpful person who deals mostly with ex-psychiatric cases.
However, to me all this makes a very sad statement about our system and society and the way some severely mentally ill people are looked after. This is how so many of our schizophrenics are allowed to slip through the cracks, most of them often ending up at the bottom of the crevasse. If you have never witnessed someone in a schizophrenic crisis it is difficult to find the words to accurately describe the impact it makes on the whole family, especially when we do not know what to do because our hands are tied.
I have just touched on a few incidents in our own 10-year history, but I would like to go back to that first horrendous summer of 1981, to those seven weeks when we did not know what to do or where to turn to get prompt treatment. I want you to try to imagine trying to calm someone who is ranting about being poisoned. He is screaming obscenities at his family and even yelling and roaring that his mother is a prostitute. I can chuckle about it now. People who know me get a chuckle out of that.
Anyway, when we finally persuaded him to go down to emergency and see somebody, while he was waiting to see the doctor he was getting more and more hyper again. My husband, who was with him at the time, not myself, was trying to keep him calm, saying: "Keep down. We're going to see somebody." He was held down and he was going to go out and leave. Try to imagine what it is like: You have this family member whom first of all you want desperately to be calmed down to be able to be helped, ladies and gentlemen, and you are told you could be charged for holding him there against his will.
Logic tells me that David's right to refuse treatment while he is in a crisis gives him the right to raise hell and gives him the right to abuse people and/or property until the police are called and arrest him. Should he not have the right to necessary help in order for him to function better in the community?
Logic also tells me that all the recurring costs of his legal aid, court costs, incarcerations and hospital stays multiplied by the hundreds of others in similar circumstances have to be phenomenal. We know that if these schizophrenics were pulled from the cracks and treated for whatever time it might take to enable them to function with some support, at least one third likely would not need hospitalization again. Many others likely would not be incurring a lot of costs to our judicial system and many others might get along much better in society with perhaps only occasional setbacks. Is this not worth a try?
One of the saddest cases I know is that of a young man from Belleville who had suffered with schizophrenia as well as some substance abuse problems and who was in and out of hospital. He too would not stay voluntarily. He ended up heading out west thinking he could get a job, and then things got bad. There was no work. He was not employable and ended up homeless and drifting until finally his family did not hear from him. The RCMP had no word. The Salvation Army had checked across the country and said that no, he had not shown up at any of their hostels, and 11 months after their last contact the father called me and said: "Margot, I want you to know I've just had a call from the RCMP. They've found David's partially decomposed body just outside Prince George."
I have to presume that these bills, while undoubtedly a boon for many vulnerable people not afflicted with brain disorders, were drafted by people who have no real firsthand knowledge of or long-term contact with severe schizophrenia and other severe brain disorders. They must not realize that the very nature of schizophrenia prevents the sufferers from realizing that they are sick and in dire need of help.
I do believe in rights, whether it is the right to drive a car or the right to have a baby, but with rights go responsibility. Ladies and gentlemen, you and I know that if we are not responsible to these rights we are granted, we lose those rights or we can lose those rights. Do schizophrenics not have the right to be helped to be responsible citizens rather than chronic court cases?
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My husband and I have often wondered what it would have been like had David been given long-term treatment for whatever length of time was needed 10 years ago, followed by proper after-care support and programs. We are still wondering, and we are also wondering how many more times this cycle is going to be repeated and if we will ever see the light at the end of the tunnel.
We believe a terrible injustice has happened to schizophrenics, their families, the community and the taxpayers of Ontario. I presume many of the MPPs know someone with schizophrenia or a relative who has someone in the family with schizophrenia. I am sure those members will thus be familiar with the agony that is suffered by both the family and the victim of the illness. If this is the case, I hope you will know why we are so anxious that access to prompt help be more available than it has been heretofore.
I have added three pages with some news clippings. This sort of thing appears in the Brockville paper quite frequently. These are some examples of what can happen. On the first page of those I made a note. I left out a very important word, but I handwrote it at the top. I left out the word "untreated" in front of "schizophrenics." I hope everybody will insert that, because it is most important.
Mr Poirier: I am going through those clippings. It is very bizarre that in 1992 people who are ill can end up being treated like that. I am sure the media enjoy the pleasure of heading things like, "Court Regular Sentenced for Breaking into House." If you go by the headline alone, you would say, "What a hell of a criminal we have here." I feel for you and I feel for the point you are bringing forward. I think it is extremely important that you come and tell us that, hopefully so that the government members will influence the government to make sure that when you need quick care like that, it is more important to get the care now. Then you would not have all of this. The reporters may have a heck of a lot fewer incidents to report out of the courtroom if people got the proper care they deserve, need and want.
Mrs Hamblen: At the time; it is very important.
Mr Poirier: At the right time and place. It is just incredible to see that. I will never again look at articles like that without checking for the words "psychiatric" or "schizophrenic." I will understand better and see a lot more clearly.
Mrs Hamblen: Letters to the editor in the local newspaper as well appear periodically, and some of them are from people I know who have schizophrenic relatives. If I may quote from one -- I am not going to read the whole letter -- she was responding to an article in the paper. She did not like the way the paper handled certain aspects of it. She says:
"The courts place this man in an unlocked ward where he can walk away at will, and tell him he must seek treatment. Does the court believe after listening to his testimony that a mentally incapacitated man can make a rational decision? Who is insane here, the man or the system? Of course he does not comply, and as a result of this the police officers are expected to do the job the Ministry of Health should be doing."
She ends by saying: "We have one of the finest health care systems in place" -- she is referring to Brockville -- "a psychiatric hospital with a well-trained staff to take care of people, but something is missing: a law to enable these people to do their job properly. The patient should not be the victim."
Mr Poirier: I tend to agree with you. I think the system is a hell of a lot sicker; just this point here, "The crown concurred that Peer should be in the hospital, but acknowledged `that's not possible.'" I think the system is screwed up.
Mrs Hamblen: I do not have any legalese or expertise, but in one of the court systems I learned that a judge cannot sentence somebody to a hospital for treatment.
Mr Poirier: Most interesting. In spite of four and a half tons of evidence, right?
Mrs Hamblen: Exactly.
Mr Kwinter: My heart really goes out to you after looking at the history you have suffered with your son. One of the major problems is one of education of the general public and the courts. I think most people reading the article you have submitted that appeared in the Brockville Recorder and Times, particularly the sentence that says, "He is diagnosed as a schizophrenic with an anti-social personality enhanced by drug and alcohol abuse," would consider that a criminal as opposed to a health designation. That is one of the problems we have, that people would look at it with that headline and say, "Oh, this guy has a problem, not a health problem but an anti-social behaviour where he has to be put away." I think it is an education problem as well, and I commend you and your organization for trying to bring this to the attention of the general public and legislators so they can be aware of the problem.
Mrs Hamblen: You are very correct, I think, about general public education and public awareness of illnesses such as schizophrenia. There is still a lot of misconceptions out there, as you know.
Mrs Cunningham: Thank you, Mrs Hamblen, for a most emotional presentation. You are quite right: I think most of us in the room who represent the public do know schizophrenics. We have them in our families. As well, I am the mother of a head-injured son who has a lot of the symptoms you have described.
What I have had to say to my constituents as they have come to my office in regard to this legislation is that the concern you have expressed today will not be taken care of with this legislation. Anybody who pretends it will is not correct; that is the way it goes.
However, there are improvements on behalf of advocates in the legislation. We are trying to listen to the public -- I think all three parties are trying to be as non-partisan as they can -- in order to correct it as far as possible.
With your indulgence, I would like to ask a question through the Chair. It concerns me when we sometimes leave some of the people who come before the committee with no hope for change. I do not know how we do it in our committee system, Mr Chairman. I know, Mike, that you care as much as the rest of us. In this instance, it is my understanding that there would have to be changes to the Mental Health Act. I would like some verification of that -- not only for Mrs Hamblen; the previous witnesses probably should have been advised. I am wondering if we can hear from counsel on that to see if I am correct.
Mr Wessenger: Actually, I would like to respond, because I was going to ask a question of the witness that I thought might clarify some of the problems. I think there is a lack of education with respect to the problems of schizophrenia, not only in the general public but also in the health care profession, particularly among physicians. If I could ask the witness a question, it might clarify.
Mrs Cunningham: That will be just fine if we are both on the same tack; whatever is most appropriate.
Mr Wessenger: As you know, under the Mental Health Act now, people who are dangerous to themselves or others are supposed to be admitted to hospital. Time upon time, I hear examples of people who to me clearly appear to be a danger to themselves or others who are taken to the hospital and refused entry. What I am suggesting is, does it not appear that the physicians are not using their judgement in admitting people who ought to be admitted presently under the Mental Health Act?
Mrs Hamblen: I often got the feeling that doctors -- well, some of them used to admit back in the earlier stages 10 or 11 years ago. At KPH I was often given to understand, "Oh, our hands are tied because of the Mental Health Act." I remember in one instance calling the Ministry of Health. I talked to a legal counsel there and he said, "No, there shouldn't be a problem, from the sound of things." I said, "Are you trying to tell me that the doctors have more power than they are using?" He said, "In many cases yes, especially in the provincial psychiatric hospitals."
Mr Wessenger: I think that is almost what we call a systemic problem.
Mrs Hamblen: But on the other hand, I am still asking, what is going on here? Is there nothing that is black and white? If a person is a danger to himself or an imminent threat --
Mr Wessenger: It does not even have to be imminent, by the way. There is no requirement that it be imminent. The legal test is purely danger, and there is no requirement that it be an imminent danger.
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Mrs Hamblen: I sometimes wonder if doctors are saying it has to be an immediate threat. Perhaps this is the way some of the doctors -- I do not know. There certainly is that reluctance to accept and say, "Let's give this a try." That is why the one doctor did go out on a limb. I talked to him and said: "Doctor, you and I know that perhaps he is not dangerous to himself at this point. He's not suicidal. He can get violent and vicious. Isn't there something about not being able to look after himself? You and I know what he's like. He can't look after himself, feed himself -- it's almost animal-like." He hemmed and hawed, but he said, "I'm going to certify him for 60 days."
That was the only doctor in KPH at that time who I felt was saying, "I'm going out on a limb, but I don't think we really have anything to worry about." I was not worried about it, because I knew I had enough if anybody were to take this up with a review case or a review court or anything. I was not that worried; I would cross that bridge when I came to it. I do not know what the thinking is, generally speaking.
Mr Wessenger: Under the act, there are some provisions that will make it easier.
Mrs Hamblen: As you can see, it has obviously not been working, not just for me, but for many other people. This act has not been working for years. I am also very frightened about the legislation now. I see it as becoming more and more difficult to access whatever help is needed when it is needed, by having to go through an advocacy system and a guardian system and a substitute decision-maker. What is the matter with me? I know this boy better than anybody else does. What education has an advocate who is called in to talk to him and tell him what his rights are, that he has the right to refuse this? How much about his actual case and behaviour would that advocate know? This is of grave concern to me.
Mr Wessenger: I might add for clarification of what you are saying that this act does not create any more rights with respect to your son being committed under the Mental Health Act. The same rights will prevail, but there are some additional provisions which we hope will be of some benefit. These provisions are set out in section 19 of the Consent to Treatment Act. For the first time, a substitute decision-maker is given authority to consent to a treatment and to consent to admission to a hospital. You being the mother of your son, you would be the substitute decision-maker in that instance, because you are on the list --
Mrs Hamblen: Excuse me, would his parents be the first ones to be called upon, or do I understand that he would have the right to choose his best buddy, Joe Blow who lives next door, to say, "I want you to go to bat for me"?
Mr Wessenger: If he is determined to be capable, he would have the right to determine someone else, yes, but he would have to be capable to make that selection of someone else; although, if the question of guardianship came up, his wishes could be represented if he wanted to dispute you being given that authority in a guardianship application. That is the other aspect. I will leave it to one of my colleagues to deal with the guardianship aspect, because we think that is another area that could be of great assistance in this regard. I think we all recognize the problems.
Mrs Cunningham: I think this discussion has been very helpful. I still do not think it would be that helpful in the case of Mrs Hamblen, because I think she would be the front-line person, given what she has described; and I intend to be in my family, under any circumstances. Most parents know the best thing for their kids. They live through night and day when there is nobody there to witness what is happening, and the day anybody takes away the parents' rights is the day I will be the first one there to defend them.
With due respect to this legislation, I do not think it is intended to do that, but I think it can be extremely complicated when people say: "I don't want you any more. I want a court-appointed guardian." Those kinds of things make it more difficult. Those are the realities of life when you get more legislation, so we have a downside and an upside if it is not used properly.
The bottom line is that I hope, coming out of this committee -- it does not usually happen, but it has in committees I have sat on before. If there should be a recommendation coming from parents or the public to change another act because of what we have heard here, we have to do it. We cannot keep piecemealing this stuff. I do not intend to watch it happen.
One of my colleagues, Mr Callahan, who in fact happens to be a Liberal member of this Legislature, has tried in other ways to change things, and when this government was in opposition, they supported him. I hope he gets a chance to bring forth that private member's bill. But I think it is up to these government members, who have chosen to be advocates themselves, when they see that some other act of this Legislature or of this province can be changed as a result of extensive and expensive public hearings we are going through -- it is imperative that they bring it forth and use the good advice they have got within a very short period of time to fix things.
There is not a person in this room who does not know somebody who, probably in the last six months, has been turned away from a mental institution and should have been admitted. I do not blame doctors or anybody else; it has to be clarified in whatever legislation is appropriate. In this case, perhaps Mr Wessenger would consider talking about the advocate's responsibility with regard to admittance.
Perhaps if this advocate is the parent and knows best -- because I will tell you that this happens with my son at the hospital all the time. Thank God the doctors take my point of view; thank God they believe me. I mean that. But in this instance, maybe an advocate should be given that responsibility too, and there ought to be a discussion at the appropriate time during clause-by-clause. These people are not coming here for the first time in a decade. They have been coming to this Legislative Assembly for 10 years, and we have an opportunity to fix it.
I hope nobody considers this a political speech, because I am speaking on behalf of all of us. I am certainly aware of my colleague from London South, who has the same things in his office as I do, and I am certainly aware of the two Liberal members who have witnessed this stuff at least in the last five years. We have to change it. So I thank you for allowing my dissertation, but you prompted me, and I thank you for being here.
Mr Fletcher: Thank you for your presentation, Mrs Hamblen. One of the purposes of this committee and your presentation is so that we can hear things and ask questions, because some of us maybe do not understand. So do not get me wrong when I ask these questions. I am not being aggressive or anything else; I just really want to know.
The first question is, as far as your son is concerned, what gives you the right to decide for your son?
Mrs Hamblen: Let me answer a question with a question, which I normally hate to do.
Mr Fletcher: I know; me, too.
Mrs Hamblen: Suppose you have a relative who has injured himself with a power saw and is terrified to go to the hospital. "No, I'm afraid. They're going to give me needles. They're going to do this; they're going to do that." Are you going to sit back and watch that member of your family bleed to death?
Mr Fletcher: That is the answer I expected, because you care for the person in your family. When that person, in your case your son, gets to the hospital and is saying things to the doctors like, "She beats me; she abuses me," who is the doctor to believe? You are saying, "No, he is having an attack."
Mrs Hamblen: The training for doctors, and psychiatrists especially, helps them to understand when a person is psychotic or delusional. If they know the person is schizophrenic, most good psychiatrists will recognize that: "Okay, there's something here. I can't take all of this verbatim. There has to be another story."
Mr Fletcher: What I am getting at is that when it comes to a doctor, and that is where I think it is a problem -- it would be a problem for almost anyone -- first, we have human rights and the rights of individuals. For doctors to take a side in any discussion or any argument could be hazardous to their practice. I am not trying to defend doctors and I am not trying to put you in a position of saying, "Well, no, forget everything else, because I agree with what you say."
Mrs Hamblen: Perhaps the emphasis has been so much wrapped around rights rather than needs that I sometimes wonder if some people have their priorities a little bit mixed up. If I were to look at other situations, I would stop and say: "Where is my priority? Is it something I want or is it something I really need?" I have to learn to distinguish, and that is what I think the challenge would be to our legislators in the introduction of and changes to legislation dealing with all these issues. I think the challenge is to ensure that access to help is available when it is badly needed, and to perhaps put certain needs ahead of rights for rights' sake.
Mr Fletcher: And it would have been so nice, as far as you are concerned, had something been done in 1981.
Mrs Hamblen: Exactly.
Mr Fletcher: Since 1981 you have been living this hell and nothing has been done. Something is being done now, and perhaps it does not address your case as you see it, but it is moving in the right direction right now, I believe, as far as the bills that are coming up now.
Mrs Hamblen: I must admit I am very sceptical. I think there are a lot of things in there that will help certain people in other vulnerable groups, but I am very frightened about the way it is going to deal with people with schizophrenia and their families. I was kind of looking at it and saying that I do not see anything here where families are going to be involved in any decision-making, in any advocacy role or in any advisory committee role. We were going to invite and have people sitting on advisory committees from survivors' groups and this group and that group, and I was not seeing any room for family members.
Mr Fletcher: Thank you.
The Chair: Thank you, Mr Fletcher. Mr Winninger.
Mr Winninger: I was going to ask a question, but in the interest of closing off this hearing, I will probably forgo that.
The Chair: Mrs Hamblen, on behalf of this committee, I would like to thank you for taking the time out to come and give us your presentation today.
Seeing no further business before the committee, this meeting stands adjourned until 9:30 tomorrow morning.
The committee adjourned at 1652.