FAMILY SERVICE ONTARIO (ONTARIO ASSOCIATION OF FAMILY SERVICE AGENCIES)
ONTARIO PUBLIC HEALTH ASSOCIATION
LEARNING DISABILITIES ASSOCIATION OF ONTARIO
ADULT PROTECTIVE SERVICES ASSOCIATION OF ONTARIO
METROPOLITAN TORONTO ASSOCIATION FOR COMMUNITY LIVING
NORTH YORK PUBLIC HEALTH DEPARTMENT
RIGHT TO LIFE ASSOCIATION OF TORONTO AND AREA
CONTENTS
Tuesday 11 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
Family Service Ontario; Ontario Association of Family Service Agencies
Miriam Mayhew, executive director
Julie Foley, member, FSO; executive director, OAFSA
Ontario Public Health Association
Linda Shortt, chair, personal health division
Audrey Danaher, chair, public policy and resolutions committee
York Community Services
Betty Wangenheim, board member
Barbara Titherington, supervisor, adult protective services
Learning Disabilities Association of Ontario
Eva Nichols, executive director
Anne Fast
Adult Protective Services Association of Ontario
Ginny Pearsall, adult protective worker
Alice Haveman, adult protective worker
Metropolitan Toronto Association for Community Living
Fred Reynolds, executive director
Lynn Hastings, board member
Cay Shedden, past president
Graham Baldwin, staff support person
Council for London Seniors
Norma Nickle, past president
North York Public Health Department
Dr Joan McCausland, deputy medical officer
Diane Johnston, assistant director, public health nursing
Victorian Order of Nurses
Gail Murray, provincial executive director
Johanne Mousseau, director of clinical practice
Margaret Aerola, executive director, Simcoe branch
Right to Life Association of Toronto and Area
June Scandiffio, president
Gwen Landolt, legal counsel
STANDING COMMITTEE ON ADMINISTRATION OF JUSTICE
Chair / Président(e): Cooper, Mike (Kitchener-Wilmot ND)
Vice-Chair / Vice-Président(e): Morrow, Mark (Wentworth East/-Est ND)
Carter, Jenny (Peterborough ND)
Chiarelli, Robert (Ottawa West/-Ouest L)
Fletcher, Derek (Guelph ND)
Malkowski, Gary (York East/-Est ND)
Poirier, Jean (Prescott and Russell/Prescott et Russell L)
Sorbara, Gregory S. (York Centre/Centre L)
Sterling, Norman W. (Carleton PC)
Wessenger, Paul (Simcoe Centre/Centre ND)
Wilson, Jim (Simcoe West/-Ouest PC)
Winninger, David (London South/-Sud ND)
Substitution(s) / Membre(s) remplaçant(s):
Curling, Alvin (Scarborough North/-Nord L) for Mr Sorbara
Also taking part / Autres participants et participantes:
Auksi, Juta, Ministry of Health
Bentivegna, Guiseppa, Ministry of Health
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 0950 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.
FAMILY SERVICE ONTARIO (ONTARIO ASSOCIATION OF FAMILY SERVICE AGENCIES)
The Chair: I call this meeting of the standing committee on administration of justice to order. Our first presenter will be from Family Service Ontario. Would you please come forward. Good morning. Could you please give your names for the record and then proceed.
Ms Mayhew: I am Miriam Mayhew. I am the executive director of Family Service Ontario, and this is Julie Foley who is a member of the advocacy committee at Family Service Ontario and is also the executive director of the family counselling centre in Sarnia.
The Ontario Association of Family Service Agencies is in the process of changing its name to Family Service Ontario and we are going to try and remember to call ourselves by our new name, Family Service Ontario. We represent 48 member family service agencies across Ontario. Our mission is the leadership, reinforcement and support of our member agencies' endeavours to strengthen, preserve and protect personal and family life. Our member agencies provide counselling and support services to individuals and families who request assistance and see at first hand the pressures experienced by people encountering a variety of social problems, including those related to marital and family breakdown and poverty.
All our member agencies provide service to vulnerable adults. Sixteen agencies of the 48 provide specific programs for the developmentally handicapped; 14 provide programs for the elderly. Many of our agencies provide one of the few services, if not the only service for vulnerable adults who do not meet the criteria of other agencies. For example, dually diagnosed adults who are psychiatrically disabled and developmentally handicapped are often serviced by our member agencies because many programs for the psychiatrically disabled do not work with the mentally handicapped.
We are making this submission because family service agencies in Ontario have always been committed to advocacy as one of their intrinsic functions. Without such a commitment, service to our clients and the community would be deficient. It would also conflict with our accreditation standards and with fundamental social work values as expressed in the code of ethics of the Canadian Association of Social Workers.
Generally we applaud the direction of this act. It addresses the genuine need for vulnerable people to have an independent advocate with the power to investigate possible abuse.
The act seems to proceed from the value base that accords vulnerable adults the same rights as other adults in the community. While this is an appropriate cornerstone for such an act, competing principles would challenge that value. Do we give up the notion of the need for protection if these adults state they do not need such? Is a statement to that effect sufficient to dismiss the advocate even if the investigator has suspicions to the contrary?
Do we treat vulnerable adults like we treat battered women? Do we provide choices and leave the decision to act up to the woman involved, or do we view the vulnerable abused adult as an abused child whose stated wishes have less influence on the outcome than the opinion of the investigating professional? This legislation assumes that the determination of the need for protection rests ultimately with the vulnerable adult. We concur. While an active and sensitive offering of options is necessary, often in a non-adversarial manner, the final decision must rest with the vulnerable adult. This stance will provide as much empowerment as possible.
However, a major limitation of this act is that if abuse or neglect is uncovered and the vulnerable adult wishes to change that, there are no resources to provide alternatively for the vulnerable adult if he or she is unable to live alone. Even if the vulnerable adult is capable of living independently, to arrange such on immediate or short notice is often impossible, and there is very little emergency service available. If advocates are to do this kind of investigation, resources must be available for the safety and support of vulnerable adults on both an emergency basis and afterwards. Otherwise we may do a greater injustice to the target population by setting it up for continued or increased abuse after the advocate departs.
We note with concern the absence in this act of a philosophical context about advocacy. Advocacy is a process, not simply a single act or intervention. On a first level, it is an integral part of a larger case management function which also includes assessment, coordination and counselling. In order to have optimal impact, advocacy services cannot be established in isolation; they must be carefully connected to the other components of case management and to other community support services. Many of these services have identified the need for increased or second-level advocacy to be available when current systems fail to provide for the clients' needs or wishes. These community services would provide referrals and backup for an advocacy service. Alternatively they might be the object of a complaint by, or on behalf of a vulnerable adult.
Clause 1(f) refers to one purpose of this act being "to acknowledge, encourage and enhance individual, family and community support for the security and wellbeing of vulnerable persons." This section underscores the value of various supports for vulnerable persons. Advocacy can only contribute to those supports if it is appropriately positioned as part of a range of service.
Community support services, especially to vulnerable populations, must be arranged on a continuum which acknowledges the connections of the services one to the other. Other programs in the community include first-level advocacy as an intrinsic function. The new proposed Advocacy Commission should encourage the use of first-level advocacy whenever appropriate. Then when necessary it would provide second-level advocacy which is problem-focused, driven by consumer wishes and triggered when existing systems cannot or will not give the client what she or he is seeking.
Ms Foley: I am going to speak to the impact on various other programs that currently exist in the community.
Clause 7(1)(e) mandates the Advocacy Commission to "ensure that community development strategies are applied in the provision of advocacy services." Healthy and constructive community development requires close working relationships with existing services.
What will be the impact of this act on other programs where some advocacy is already in place? Those include services such as the adult protective service workers, many of whom are placed at family service agencies, the patient advocate who provides advocacy services to people in psychiatric facilities, and case management programs which work with people in the community who have had a psychiatric illness.
The December 1990 Backgrounder circulated by the Office for Disabled Persons suggests that the patient advocate provided under the Mental Health Act would be transferred to the new Advocacy Commission. We would support such a transfer in that the new system would be asked to intervene for individuals who may have multiple disabilities and who could easily fall into the cracks if there remained two separate systems.
We would urge that the APSW program continue intact where it is part of an integrated service delivery system. The new Advocacy Commission would be available as an additional resource when APSWs face a situation for which they need further resources, in much the same way they use other community services such as health care or legal clinics. In this way, advocacy as a process remains part of the continuum of service and is not isolated or divorced from other programs.
We are aware there has been a suggestion that the APSW program should be absorbed into the Advocacy Commission. We would strongly oppose such a move as it ignores the other equally important case management functions of assessment, coordination and counselling that APSWs do. It also ignores the fact that a considerable amount of first-level advocacy is successfully achieved by adult protective service workers. Inclusion in the Advocacy Commission would endanger the integrity of the APSW program as the commission would not be equipped to ensure the provision of those other services of counselling, assessment etc.
It must be acknowledged that advocacy is a process of interference in the status quo. Whether it is practised on behalf of individuals or groups of vulnerable people, its very nature means that existing government and social services may be challenged.
It has been our experience as family service agencies that some Ministry of Community and Social Services personnel have not always respected the implications of the advocacy work done by APSWs, especially if it challenged some other MCSS-funded programs.
In the areas where this has occurred, it is a serious problem that must be addressed, but that address would be more appropriately accomplished through either consistency on the part of the MCSS personnel or by moving the sponsorship of an intact APSW program to another ministry rather than by a wholesale absorption into the Advocacy Commission which we believe would result in a disrespect for other APSW functions. Such changes would free APSWs to advocate on behalf of a consumer even if that meant a challenge to the programs funded by the Ministry of Community and Social Services.
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There are several specific clauses we want to speak to.
Subsection 3(2) refers to the possibility of volunteer advocates. We are uncertain about the purpose of that or exactly in what manner volunteer advocates might be constituted. While the intention might have been to utilize appropriate friends and family members, we believe that should be done only with the most careful screening so as not to jeopardize those very relationships. At the very least the expectations, training, supervision and, most of all, accountability of any volunteer advocates should be the same as for paid staff.
Subsection 5(2) speaks to the number of people on the Advocacy Commission. The range is from 7 to 13. We suggest the upper limit be the target, as the number of organizations which represent vulnerable persons is extensive. To ensure province-wide representation and a range of disabilities being represented, that would suggest the number 13 is much more appropriate.
Subsection 15(2) speaks to a majority of the members of the commission having been persons the organization represents. We were uncertain about whether that referred only to disabled persons themselves or if it also included their families that many of these organizations represent. Many of the organizations referred to in section 15 are comprised of people who have a specific interest in the disability, with often the minority being people who have, or have had the condition themselves.
Section 21 refers to the premises where an advocate can enter to do an investigation. We are a little concerned that this leaves it open to an advocate demanding or requesting entrance to a private home. It is interesting that "premises" in that section is not defined, whereas elsewhere "facility" is very carefully defined. We think this leads to a debate about whether the risk of neglect or abuse of a vulnerable person outweighs the right to privacy on private premises. Our society has made a clear determination about this regarding vulnerable children, but we are not sure the same should be applied to vulnerable adults. We suggest one compromise might be that a warrant be required for entrance to private premises.
Section 27 refers to an allowance of four days before access to the records would be available. We are of the opinion that this might present an unduly long delay and could in extreme circumstances result in the alteration of a record.
Section 30 uses the word "may" to describe the course of action in reporting the likelihood of serious bodily harm. Such a possibility calls for a stronger directive. We suggest the use of the word "shall" would be more appropriate. Reporting could be somewhat open in that a warning directly to the person concerned could constitute proper reporting.
Some other items are not addressed in this act and require clarification. Notwithstanding clause 36(d), we are uncertain about who will determine the state of vulnerability. We think that should probably be greatly defined in the act rather than left totally to the determination of the commission in regulations. The act does not speak to the circumstances where the consumer is not able to give direction about his or her wishes to utilize the services of an advocate. Finally, if abuse is reasonably evident, what happens then? Who decides if a charge is to be laid? Fundamental to any system of formal second-level advocacy is that the line of accountability be outside an agency which is a major provider of service. The Advocacy Commission as envisioned in this act would provide that either directly itself or through non-profit community agencies.
In closing, we commend the effort which has been directed towards the increased protection of vulnerable adults. We would suggest that an evaluative function and a duty for the minister to respond to or act upon the annual report of the commission be added considerations prior to the final drafting of this act.
Mr Poirier: Interesting points. I am also worried, as you are, about possible duplication of services. I know that at some places you mentioned you would like some of the advocacy services already there to remain, with the Advocacy Commission providing some other services of advocacy on a parallel basis. That can be done, but after 13 years of community development work, including seven as an MPP, I have given up trying to ask different MCSS managers, "What do you do that they don't do?" You may get four, five, 10 or 15 organizations that service the handicapped or whatever specific nature you would want to see in the community. All I get is this blank stare on their faces: "I'm not too sure what that person does. This is what we do." Are you not afraid that there might be this kind of duplication -- I am being the devil's advocate here -- unless you assemble all advocacy under one commission?
Ms Foley: It certainly calls for an understanding about what level of advocacy you are speaking to. We are clear that, for example, what we would call third-level advocacy, which is the legal system, would not be part of such a commission. We discern a difference between what we would call second-level and third-level advocacy. Because advocacy at the first line is such an integral part of so many community agencies, that part should not be duplicated. I do not see the current Advocacy Commission duplicating that. I think they are providing a second level of advocacy that goes beyond what is currently available and does so in a fairly defined and well-considered manner that is still, hopefully, non-adversarial and will in most cases mean that the situation does not have to proceed to a third-level or legal kind of advocacy.
Mr Poirier: There is another point here that says, "At the very least the expectations, training, supervision and accountability of volunteers should be as for paid staff." Nice wish, and I agree with you, but do you think that in the real world that is possible? There would be a lot of expectations about paid, trained, professional -- if I may use that word -- advocates. Can you expect that, with the same accountability, of volunteers?
Ms Mayhew: We probably would not, which is why we are concerned about the appearance in this bill of any consideration of using volunteers. I think it also needs to be said that just because they are not being paid does not mean the job they might want to do is not important.
Mr Poirier: Of course; I agree with you.
Ms Mayhew: If it is important enough to have them do it, then it is important enough to have them accountable for what they do. Having said that, you are right. Accountability is often less achievable with volunteers. Hence our concern.
Mr Poirier: That is right.
Mr J. Wilson: Admittedly I do not know a lot about advocacy; I am learning a lot in the process of these hearings. To hear that there is first-level, second-level and third-level advocacy, you would expect that the advocates hired by the new commission and supervised by it would provide the full continuum of advocacy. I am a little confused. They would do first-level; I have got that clear. Then you talk about integrating with other community services.
Ms Foley: Let me be more clear about that. First-level advocacy is the intervention when you are doing several other things with people. You may be helping them to take a look at what their options are in the community, to pursue those options, to jockey other services to provide what a certain person may need. That is part of what currently goes on in the community, and often successfully but not always so.
There are times when people are truly in jeopardy, are being disadvantaged by people who are in a position to abuse them personally, physically or sexually, sometimes in terms of their money. That is the second-level advocacy, where some greater force of law and investigation is required to protect someone's rights. That is what we see the Advocacy Commission doing. The first level -- jockeying, assisting, assessing, coordinating, some counselling -- is already accomplished, but at times it cannot meet that second level of vulnerability, which requires a greater legal mandate.
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Ms Mayhew: The first level could be likened, in a way, to brokerage. Existing programs, including those offered by adult protective service workers, are very successful in providing the brokerage service to make sure that people who are disadvantaged get put in touch with the various networks they need. It is where that does not work or where there is more specialized advocacy needed that we see the proposed Advocacy Commission fitting in.
Mr J. Wilson: I appreciate that, because one of the concerns we have is that we may be setting up a system that is perhaps a bit more adversarial than what we have now. You mentioned on one of the pages of your brief APSWs running into conflict from time to time with other service organizations and then you talked about the new advocates doing second-level advocacy, particularly in families and emergency room situations and that sort of thing, outside the psychiatric area. Can you give us an example where an APSW now would run into problems that may need to be sorted out? Have you a real-life example of what you refer to at the bottom of page 6?
Ms Foley: Certainly we run into situations where we have some reason to believe that a developmentally handicapped adult may be physically abused or financially abused by people who are looking after the adult. It is very difficult to investigate that, because that adult who is in charge, so to speak, will not allow us access to the developmentally handicapped adult. If they say, "You can't come in here and you can't talk to them," we have no way of forcing that.
Those are some typical examples. We realize that even if you can sometimes get in, if such an Advocacy Commission would provide the legal mandate to allow entry, that does not necessarily mean that a solution for the problem is found, but at least there is one additional level of investigation and at least there is the choice then of offering the vulnerable adults some options, which sometimes we are not able to do because we are not able to get to them. Is that helpful?
Mr Sterling: I want to get from the ministries that are here, for my own knowledge, all the existing agencies providing advocacy services, their budgets, their mandates and whether the government envisages these agencies or parts of ministries closing down as a result of this act taking over their functions. I think one of the options the committee should look at, as I think one of our witnesses put forward yesterday, is whether you extend the functions of those advocacy groups that are already there. I would like to receive that information because I am concerned, not only with the concepts involved here but also with the financial picture of duplication and dispersing of efforts. As I read this bill and I go through it, it seems that we are going to provide advocates for people who do not want advocates in this province and for people who do not need advocates. We are casting a wide net, and as a result of it I think because of financial constraints we are going to leave out some of the people who really do need these services.
Mr Malkowski: When we are talking about what we do with the current services, the act will not interfere with those programs. I just want to clarify that for you, Mr Sterling.
Mr Sterling: As we have had first-, second- and third-level advocacy described, I would like to know all those agencies which are providing second- or third-level advocacy services to the public and are funded by the taxpayer. I do not understand why you should not be able to provide that. I would like to know the numbers.
Mr J. Wilson: It goes back to Mr Poirier's question. In our own communities we have numbers of groups that reportedly do the same things and now we are starting another full series, so it would be incumbent upon the government to see whether we are duplicating.
The Chair: Thank you, Mr Sterling. Briefly now, on this side we have Mr Winninger and Ms Carter.
Mr Sterling: I am sorry. Am I going to get an answer to my question?
Mr Winninger: As long as it does not cut into our time.
Mr Malkowski: The Advocacy Commission, in terms of making the regulations, will deal with that issue.
Mr Sterling: I want to know what you are doing now. I want to know what advocacy services are being provided by the government now to the public of Ontario, whether you are in a psychiatric institution, an old age home or wherever. I want to know what is being spent there and whether the Advocacy Commission is going to be doing the same job. Do not worry about the Advocacy Commission, just tell me what you have there now. I would like to know what those services are, what they are costing and how many people are working at them.
The Chair: Possibly what we can do is get a written answer for you later.
Mr Sterling: That is what I would like. I would like a commitment to that.
The Chair: If it is possible, Mr Malkowski, a written answer later?
Mr Malkowski: I will refer it to Trudy Spinks for comment.
Ms Spinks: I think your request for a written answer may be well taken. I can tell you, for example, that the people you heard from yesterday, like the Advocacy Centre for the Elderly, are examples of what I think the presenters would describe as third-level advocacy. The Advocacy Resource Centre for the Handicapped is also a very prominent third-level advocacy organization. I do not have specific dollars around funding. They are provided through the legal aid program.
Mr Sterling: You can get that for me?
Ms Spinks: I will attempt to get that for you, yes.
Mr Winninger: I appreciated your presentation. You raised a concern about section 27 and the four-day time period for responding to requests by advocates for access to information. I understand there may be emergency situations where a shorter time period would be in order, but do you not think that four business days is a reasonable time to review what may be quite voluminous records and determine which of those records can be released or which cannot be released because they happen to be protected by the Freedom of Information and Protection of Privacy Act, or may pertain to a third party who has not consented to release of them or may even be protected by solicitor-client privilege. Four days does not seem to me to be an unduly extensive period of time to conduct that kind of review. Perhaps you can comment.
Ms Foley: It is hard to know ahead of time whether we are in jeopardy of any record alterations. That is a very serious accusation to raise or bring. It seemed to us to be fairly long, I suppose in that most of us at family service agencies can make records available very quickly and yet still are under those obligations of ensuring that whatever records related to Mrs Smith, if they also include references to someone else, have those removed before Mrs Smith sees her record. It just seemed unduly long. It may be that we need to play it out and see if that is a workable number or if in fact that does lead to some jeopardy.
Ms Carter: I think you make an excellent point on page 3, that sometimes the resources are not available for people who may need alternative accommodation and so on and that we risk making their situation worse if they have to stay with the people who are causing their problems. I do not think we can do everything in this act, but I am just wondering whether some of the other things we are doing might not be relevant here. I am sure you are familiar with the long-term care proposals that are now out for discussion. Also, a lot of affordable housing developments are being encouraged and a lot of them are coming to fruition. I was wondering whether you think that some of those problems may be answered in that kind of way, because under the long-term care act that will be coming forward we are trying to increase service in the community as opposed to institutional care. Maybe when some of that is in place it will solve some of these problems.
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Ms Foley: When some of those pieces are in place, I think they do provide some long-term assistance -- housing, long-term care. Some of our concerns are that this is not currently available, that some of the needs of some of these people are very specialized and, last, that the emergency care is not available, an alternative place to house someone, even if they do not need a great deal of care tomorrow, because they have finally said, "Yes, this is an intolerable situation for us." Sometimes it is more the emergency concerns, assuming that some of those other pieces get put into place.
Ms Carter: Maybe on the lines of the YWCA's Crossroads but for a different clientele; that kind of service.
Ms Foley: Yes.
The Chair: Ms Mayhew, Ms Foley, thank you very much for taking time out of your schedule to come in to give your presentation this morning.
ONTARIO PUBLIC HEALTH ASSOCIATION
The Chair: Our next presenters will be from the Ontario Public Health Association. Could you please come forward and introduce yourself for the record and then proceed.
Ms Shortt: My name is Linda Shortt. I am chair of the family and personal health division of the Ontario Public Health Association and in my professional life I am director of adolescent health at the Borough of East York Health Unit.
Ms Danaher: My name is Audrey Danaher. I am chair of the public policy and resolutions committee for the Ontario Public Health Association.
The Ontario Public Health Association is a 3,000-member organization of individuals and constituent associations from various sectors and disciplines who have an interest in improving community and public health in Ontario. Its goal is to provide leadership and a unifying voice in public health and to promote the health of Ontarians.
We will be addressing Bill 109, An Act respecting Consent to Treatment. Section 8 of this bill specifies age 16 as the age at which a person is presumed to be capable of consenting to treatment. Section 9 makes provision for a health care professional to give care to a person under 16, but the onus is put on the health care professional to comply with certain criteria, standards and procedures. Even if this is made easy, it is still intimidating and it is likely that most health care professionals will simply refuse to provide confidential care to those under 16. It is even more likely that those under 16 will not seek care.
There is an additional complication, fear by health care professionals that their care to a young teenager would be challenged by a parent. This is far more likely with a specific age set out in statute. In Britain, with a statute specifying age 16, the National Health Service reminded health care professionals that it was still possible in some circumstances to provide care to a person under 16. This was challenged by a parent and the case went all the way to the House of Lords.
The social consequences are serious. First, with respect to teen pregnancy, Ontario has made major gains in reducing teen pregnancy. These gains could be lost and Ontario, with the type of legislation common in the United States, could experience US rates of teen pregnancy. It is noteworthy that the teen pregnancy rate in Canada has been fairly static except in Ontario and Alberta, both provinces until now not having an age of consent. The highest rate of teen pregnancy in Canada is in Saskatchewan, which specifies age 18 for consent to medical treatment.
The Ontario teen pregnancy rate, which has improved the most among Canadian provinces, is due to increasing sexuality education in the schools, family planning clinics in health units and health care professionals providing care to teenagers in accordance with common law. Common law respects the right of persons to consent to care, provided they are capable of understanding the nature, purpose and consequences of such care.
Second, with respect to sexually transmitted diseases, all sexually transmitted diseases affect teenagers. Of recent importance is the epidemic of chlamydia. In Ontario in 1990, over 400 cases of chlamydia were reported in females under 16 years of age and the rate is increasing. Chlamydia often causes no symptoms but most cases have mild symptoms and it is common not to seek treatment. The untreated infection goes on to cause severe complications, including involuntary infertility. The increase in young Ontario teenagers being infected is shown in the attachments you have there.
It is vital that there be prompt access to confidential treatment at all ages if we are to control this infection. This also applies to all other SDTs including AIDS and hepatitis. Teens afraid to seek treatment would also not receive the intensive counselling these SDTs require.
Studies of parental attitudes to confidential care of teenagers have been uncommon, but a recent 1990 study in East York showed that parents as well as teenagers placed a high value on confidentiality. A law that presumes capacity at age 16 may not even be supported by parents, most of whom would prefer that their youngsters seek care from a health care professional rather than have them become pregnant.
In terms of options, there is considerable support for age 12 as the age for giving consent, but the problem with age 12 is that some at this age may not be capable. Common law requires the health care professional to make a judgement in each case. The retention of common law is therefore preferable to a statute specifying age 12.
Our recommendations are as follows:
1. To amend Bill 109 by deleting reference to age, on the basis that society is best served by common law.
2. We urge the government to support education of health care professionals and public education respecting the application of common law to minors seeking confidential care.
Mr Poirier: I am quite happy you are talking about this age thing. There is your claim that in Ontario in 1990 over 400 cases of chlamydia were reported in females under 16 years of age. From my informal talks with some local doctors, this seems to be an extremely low figure, but then of course with statistics it is only the tip of the iceberg, I presume.
I think it is extremely important that people under 16 be able to get medical attention and not have to worry about the implications of the law, and that the health care providers not have to worry about the implications of the law or the silence of the law to protect them in all good-faith dealings with their clients.
An interesting point I would like you to explain further is: "A law that presume capacity at age 16 may not even be supported by parents, most of whom would prefer that their youngsters seek care from a health care professional rather than have them become pregnant." Maybe English is my second language, but what does that say?
Ms Shortt: What it means is that we surveyed parents of over 1,000 adolescents in East York and asked them what was the most important feature of sexual health care their adolescents might seek. What they said was the confidentiality and privacy of that kind of service; that was the most important feature. What we had parents say was that it was important that teens have access to confidential and private health care services.
Mr Poirier: Whether the parents were aware of it or not?
Ms Shortt: That is right.
Mr Poirier: They were comfortable with that?
Ms Shortt: They were comfortable with that; not all of them, but the majority of them.
Mr Poirier: Interesting. Therefore, there seems to be a green light for the health care providers and for the government legislators not to have to worry about a majority of parents who say, "You shouldn't allow my under-16 child to have access to a health care provider."
Ms Shortt: I think it is dangerous to assume parents in East York are the same as parents all over Ontario. As a professional who works with teens and as a parent, my first preference is that I know exactly what my kids are doing, but I know they are not going to ask permission from me to have sexual intercourse under the age of 16, so my second preference is that they be protected and get the kind of health care that would serve them best. I believe most parents would feel that way.
Mr Poirier: If we can extrapolate a bit, as wild as extrapolations can be, there again, "Common law respects the right of persons to consent to care, provided they are capable of understanding the nature, purpose and consequences of such care." Therefore, you believe that common law can take care of protecting the young person under 16, no matter what the age, and that common law will also protect the health care provider should society or someone in society decide to challenge that.
Ms Shortt: Yes.
Ms Danaher: Yes.
Ms Shortt: Our fear is that if you enshrine age 16 as the age of consent, we are going to have health care professionals who literally will not stick their necks out and provide care because the system of rebuttal is going to be too cumbersome for them. Teens will then just not seek care.
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Mr Poirier: I could not agree more with you. Maybe the parliamentary assistant could react to that and tell us how he feels and come out and tell us right now whether he will come out with an amendment. How does he react to these claims?
Mr Wessenger: I do not know whether I will actually respond, but I will respond to the extent that the question of age is an open question with respect to this legislation. It is one of the areas where the minister has indicated we are open to advice with respect to the matter, as we are in all matters. I think that is one she has flagged as of concern.
But I do have a question. If we move back to the common-law situation and not specify an age, what do you do with respect to a child who is, say, under 16 and the health professional determines the child is incapable? Normally, if there is no age specified, that would trigger a rights protection; in other words, the right to consult with an advocate. Should there be a minimum age at which the child should have the right to consult with an advocate on rights protection? Should it be age 10? Should it be age 12? Should it be age 14? Do you have any recommendations in that area?
Ms Shortt: If you leave it open, with no specified age, then the health care professional must make that judgement. If you put in an age, then they are not going to make the judgement below that age. At the moment, when we find young people who come to seek treatment who are under the age of 16 who seem incapable, we refuse treatment, attempt to contact parents and go that route. My presumption is that all ethical health care professionals would continue to practise in that way.
Mr Wessenger: I think my question, though, relates to when a child should have rights protections. At what age should they have rights protections?
Ms Danaher: It is difficult to specify one age, because each child is capable of consenting at different times. In one case a 14-year-old may be quite capable and other times someone who is 12 might be able to make those decisions.
Mr Wessenger: I understand you can have that. You could even possibly have some type of treatment, shall we say, and even an 11-year-old might have the capacity to determine medical treatment.
Ms Danaher: Of course.
Mr Wessenger: Right now under the act there is an obligation to tell the incapable person that he or she is determined incapable and then he has the election to have a rights adviser come in. It would obviously not make sense to allow a four-year-old -- at least I think it would not make sense. The medical profession tells us that it does not make sense to have a rights adviser come in and tell a four-year-old that he or she has the right to dispute that there is a finding of incapacity.
What about a 12-year-old, for instance? Do you think a 12-year-old should have the legal right to have protections, to have the right to see an advocate and the right to dispute the fact that the health -- it could happen, you know. A health professional, because of his or her own views, could say, "I don't think a 12-year-old is capable of making this decision," and the child might say, "I want to make my own decision." Should that child have the right to dispute that and at what age should he have the right to dispute that finding of incapacity?
Ms Shortt: I think we are reluctant to answer your question. I do not have an answer for your question. I do not know at what age a child would have that right.
Mr Wessenger: But you do feel that certain children under the age of 16 should have the right to dispute the finding of incapacity?
Ms Danaher: Yes, absolutely.
Mr Chiarelli: I know you did not specifically address this in your brief, but I am interested. You obviously have a broad background in public health issues. Do you have any sense as to how the act might work in practice in emergency situations, particularly in the mental health area, where someone is brought into emergency and is not in control of his own faculties in order to give proper consent? They have gone off medication. They are at risk of doing harm to themselves. Under those circumstances, do you have any comments on how the legislation might work?
Ms Shortt: Our expertise really is not in that and we are probably not the best people to answer that question. We are looking at the impact of enshrining age 16 in legislation and the impact that will have in the community, where you have health care proficient practitioners and family physicians trying to make judgements about service to children.
Ms Danaher: On a daily basis.
Ms Shortt: On a daily basis, rather than in the acute care setting.
Mr Sterling: I am interested in the fact that the common law is working well at this time, and basically part of section 6, I guess -- I cannot read it very well -- seems to take care of the situation at this time. I see what Mr Wessenger is after, though, and that is, at what point do you not go through the process? If you have a baby that is being circumsized after birth, do you call in the advocate? They are caught in a conundrum here in terms of the other part of the system matching up. What happens at the present time when a decision is made? I guess it is just consultation between the physician and the parents who make the decision.
Ms Shortt: You mean for a very young child?
Mr Sterling: Yes, for somebody who is not competent.
Ms Shortt: Yes.
Mr Sterling: That is what happens at the present time. It is very difficult to know what the age is, whether it is four, six, eight, 10 or whatever.
The Chair: Mr Wessenger, did you have a further question?
Mr Wessenger: No, I have no further questions.
The Chair: On behalf of the committee, I would like to thank you, Ms Danaher and Ms Shortt, for giving your presentation this morning.
YORK COMMUNITY SERVICES
The Chair: Our next presenter will be from York Community Services.
The Vice-Chair: I want to thank you for appearing before us. Before you start, I hope each of you will give us your name, just for the record, and then you may begin.
Ms Wangenheim: My name is Betty Wangenheim and I am on the board of York Community Services. I am here to introduce the others and give a little bit of talk about YCS. We will save time if we say YCS, if you do not mind. Barbara Titherington, who is our mental health nurse and the supervisor of our adult protective service workers, will be our chief spokesperson. Dennis Robideau, who is a community legal worker, is here to back her up. In the background we have three adult protective service workers who are very much interested in this and a student from Humber College, so we are getting a lot of interest in this.
York Community Services is a multiservice centre in the city of York, which is an area which has an overrepresentation of the poor, of seniors, of single-parent families. It is definitely a multi-ethnic community with high unemployment. In one way we could say that all our clients are vulnerable, but in addition to that we have what we call target groups that are particularly vulnerable, such as the developmentally handicapped, so we have adult protective service workers, we have psychiatric aftercare work and we have people working with the vulnerable elderly, both in English and other languages.
Our workers care for individuals. They do what we call case management. They also of necessity do advocacy, some advocating for the problems of a particular individual, but because so many of our clients fall between the cracks and there is no group that is particularly looking after them, our workers find themselves having to advocate on a general level for the needs of specific groups.
We have a standing committee on the vulnerable adult which has been working on the problems you are putting before us, these particular bills and the interrelationship. We have found it a difficult thing in that if we only had to discuss one bill we could grasp it easily, but we have concerns about each bill, and we also have concerns about how each bill impacts on the other bills.
In the next 15 minutes we are not going to be able to express to you all our concerns. Barbara Titherington is going to discuss those things which are closest to us, most of which come in the matter of Bill 74 on advocacy. We also have recommendations that entail the relationships between all three or four, including Bill 110. We may not get to those, but we have a brief coming which will go into more detail. The recommendations will be put out so that you can ask us questions about all those if you want.
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Ms Titherington: Because we are a multiservice agency we took a shot at everything, but that will lead to problems with timing. I will cover some of the highlights and then we will see what comes up in the questioning.
York Community Services applauds the efforts made by the government and advocacy groups to develop this legislation, which is intended to protect the rights, choices and safety of vulnerable adults who may or may not require the assistance of a substitute decision-maker. The matter of imposed protection is a thorny one because it sometimes involves competing rights: the right to liberty, autonomy and self-determination versus the right to protection from the abuse of others and from one's own incompetent decision-making.
Our clinical and community experience supports the belief that there is a need for clear legislated protections, procedures and assistance when a person is incapable of making his or her own choices. One of the strengths of the bill is that it makes it possible to know and follow an incapacitated person's wishes which were expressed when they were capable.
However, we think considerable caution is needed in dealing with these matters, because we believe that personal freedom and choice are of the highest order of rights, and that guardianship removes the fundamental right of self-determination. Thus York Community Services encourages the government to view these pieces of legislation as being relevant for incapable people only after all other resources have been exhausted. Such resources could include existing effective community and social services, such as adult protective service workers, case managers, counsellors for the elderly and handicapped, and counsellors for people with mental illness as well as family counsellors. The efforts of these people serve to enhance the decision-making capacity and functioning of those who are at risk for becoming incapable. Strengthening the current supports and services could reduce the need for more formal advocacy and guardianship.
Also, we would like to see that all legal proceedings related to the measures allowed in these acts are strictly in accordance with the highest standards of justice, including the provision of adequate safeguards against unnecessary interferences by advocates and guardians. We have some questions about the level of proof required in the determination of incapability. While the magnitude of the effect of the removal of decision-making rights leads us towards the application of the higher standard of "beyond the shadow of a doubt," clinical practice indicates such a high standard is probably unattainable and that "balance of probabilities" is more reasonable.
The bureaucracy surrounding the structures and proceedings of these proposed pieces of legislation is likely to be an additional interference with a vulnerable individual's rights. From experience we know that the office of the public trustee is now overburdened with trustee responsibilities. It is not uncommon at this time to run into problems with trust officers in sensitizing them to the wishes and usual spending patterns of the individuals whose financial affairs have come under their jurisdiction. In addition, response time to requests for money, efforts at case coordination, and management of emergency needs can be unpredictable.
Finally, educational efforts to inform the public and professions of the intent, provisions and use of these bills must be rigorously undertaken. This would require both an immediate and an ongoing educational campaign using multilingual and literacy-sensitive approaches, with specific attention to people who are or may be vulnerable and their families, as well as to professionals and the public.
Now that I have given a summary review of some of our overall impressions of these bills, I will touch on a highlight of the individual pieces of legislation, starting with Bill 74.
The advocates under the jurisdiction of Bill 74 explain the legal rights and options to vulnerable people, take instructions from their clients, give voice to the competent wishes, if they are known, of their clients, and work towards ensuring the best possible outcomes.
In our opening remarks, reference has been made to the concerns we have regarding the separation of advocacy services from effective counselling and case-management services. While we appreciate that there is sometimes a need for strictly legal and/or impartial rights advice and action, it should be strongly recognized that as many advocacy functions as possible remain within the mandate of effective, ongoing counselling programs, and that when formal advocacy comes into play, where possible there should be good communication and coordination between formal and informal advocates.
Certainly formal advocacy services which are not associated with other service providers can be critical to the protection of the rights and freedoms of vulnerable people and critical to their position of having equality before and under the law. The provisions of the act will help to guard against abuse and neglect of these people and will assist them in accessing needed legal, social and health care.
Our concerns are that the advocate must establish what the wishes and needs of the individual being represented are, and this requires good communication. There must be recognition therefore of the need to surmount barriers to clear communication, such as low literacy level, mental dysfunction, deafness, linguistic differences, severe speech impairment and cultural factors. Included in this matter of communication is also the problem of non-instructed advocacy. As it currently stands, the act does not make adequate provisions for advocacy without instruction. This will leave those who are not able to instruct an advocate, often the most vulnerable people, in a position of having no formal advocacy services.
We think the focus of the act is another problem, in that it concentrates mainly on the structures of the commission and the appointments advisory committee and the proceedings related to gaining access to premises and records. There is very little about a model of advocacy. This would be critical to the fair and effective implementation of the act.
Along these same lines, there is insufficient reference to the principle that advocacy should help people to maximize their autonomous informal decision-making and achieve their highest possible level of functioning. Also there is no attention given to the specific needs of people who are vulnerable. Furthermore, some people have expressed concern about the lack of a provision for change if a vulnerable person does not like his advocate.
We also have questions about the three pieces of legislation being enacted together. We recommend that Bill 74 be enacted first to give time to establish an effective advocacy program and that Bills 108, 109 and 110 be held for several years.
Lastly, for Bill 74, we believe that an advocate should be allowed to and perhaps required to report the possibility of likely harm to self as well as likely bodily harm to other people.
I know I am running out of time but I will just touch on Bills 108 and 109.
In Bill 108, we agreed with much of it, but we have some points of concern. One of these is that there are no procedures recorded in subsection 16(7) for actions to be taken if a person refuses statutory guardianship. Also, in the process for assessment, although it seems to be well-described and thorough, there is no mention of who the assessors may be and what level of training and accountability is required.
In section 47, in the event that the public guardian and trustee's office must assume guardianship responsibilities, personal care decisions on an ongoing basis will be difficult due to the lack of a personal relationship with the individual and the likely bureaucracy of this office.
In section 49, guardianship plans are very good and will encourage a thorough, thoughtful and accountable decision-making process. But if you leave it to the public guardian and trustee to simply follow policies and guidelines instead of requiring them also to make a plan, it will be inadequate.
In section 50, physicians should not automatically be accorded the status of being an assessor. They should require the same kind of training as all other assessors.
We have some concerns in section 57 about partial guardianship. It may present some unanticipated problems, as it could be viewed as being less serious than full guardianship. Such a perspective could then lead to relaxing the criteria for determining that a person is incapable. Also in day-to-day practice, partial guardianship may be quite complicated and we recommend that this part be reviewed and looked at again.
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In section 64, decisions regarding health care can be included in the scope of the guardian's duties. However, we wonder what will happen if the person who is the incapable person disagrees with the guardian's decisions. This particularly comes up in areas of medication, surgery, medical tests, as well as in softer areas: places to live, daily activity, hygiene standards and so on. The act does not identify the measures which should be taken in the event of such disagreements.
In Bill 109, we have concerns about the age of consent to treatment. The assumption of incapability for those under 16 will present an unnecessary barrier to confidential health care for teens who are seeking family planning assistance, abortions and treatment for sexually transmitted diseases.
Also, as with the 16 years in Bill 74, we believe people under 16 should have access to an advocate if they are in certain care facilities and require those services. We also think there will be a problem for health-care providers to determine if there is a valid guardianship or attorney arrangement, unless there is some way of filing these documents and giving access to them by the health-care provider.
Again, sections 14 to 21 do not provide any guidelines in the event that the incapable person refuses to cooperate with treatment, both in institutional settings and in the community.
Lastly, in Bill 110 we have some concerns about the proposed new office of the public guardian and trustee having the requirement that the public guardian and trustee must be a member of the bar of Ontario with 10 years' standing. This may serve to perpetuate the present legal tone of the office of the public trustee instead of emphasizing the multidisciplinary approach to trustee and guardianship matters.
Although we have our recommendations set out separately, I will not review them because I have referred to them in many of my comments.
Mr Poirier: In 25 words or less, could you elaborate a little bit on why you want the delayed action between the different bills.
Ms Titherington: We believe it will be a challenge to set up an effective and sufficient advocacy program and establish it in the relationship to the advocacy program, to the commission, to other agencies, government and so on. Before the advocates have to jump into doing a lot of work with Bills 108 and 109, we think at least a year or so should be allowed to get it up and running.
Mr Poirier: No doubt. But if I may be again the devil's advocate, consent to treatment and the other bills also --
Ms Titherington: Yes, they all fit together. I understand your point and it is well taken.
Mr Poirier: Like I said, we were given this document yesterday, which is a resumé. I have never seen as many arrows pointing to another bill. It is like trying to drive downtown with the one-ways in Toronto.
Ms Titherington: I think you have an excellent point. What will the advocates do if there is no Bill 108 and Bill 109? What will be their mandate at that point?
Mr Poirier: Would you be more handicapped without them or with them, all trying to have things come forward? Have you discussed this intensely? I am sure you have not.
Ms Titherington: We have discussed it and it is one of the considerations we have, because it does take a long time to get a system place. Maybe a shorter lag time would be more appropriate.
Mr Poirier: Does it ever get fully in place, sometimes?
Ms Titherington: Of course this is not Utopia.
Mr J. Wilson: You mentioned briefly some concerns about added bureaucracy. Are you very much worried that a new system of advocates will bring in a real bureaucratic burden? Do you want a chance to expand on that?
Ms Titherington: Our experience with the bureaucracy of the office of the public trustee is that it is very centralized and runs according to certain regulations. It is not really set up to be sensitive to the individual needs and changing needs of people.
Mr J. Wilson: Because it does a sort of mechanical processing?
Ms Titherington: Yes. It is not to fault them. It is just the way they have been established to date. They have been dealing mainly with financial matters. In this kind of work, and we do day-to-day clinical work and often include advocacy in that work, you really need to be in touch with the family, the friends, the person, their community, their situation and usual preferences, and these things change and you have to be able to react and respond to those changes. It is difficult to know how to establish it.
Ms Wangenheim: We have great sympathy for your having to figure out how all these acts come together on short notice, because we have been working on them since last fall and we are still not sure.
Mr Poirier: No worse than the government; do not worry about it.
Ms Wangenheim: Yes, I know. One indication, for example, is that one of our people working with seniors has had great difficulty with the public trustee, trying to explain that whereas they might think you should only spend this much on something, when somebody's style of life has been different and our workers are aware of what the style of life has been, what the person wants is perfectly adequate. We have also figured out that in some of these things, particularly with the substitute treatment decision-making, if it goes through all the things that are laid out, they are afraid some of the patients are going to be dead before all this has been explained to them.
Ms Titherington: Unless the office changes and can react very quickly. This applies to decisions regarding psychiatric treatment when a person is admitted in a psychotic condition and to a psychiatric facility. You can use chemical restraints at this time if restraint is required. The new bill, I believe, does not allow chemical restraints, only physical restraints. This will make it very difficult to manage people who are in an acutely psychotic and disturbed condition, so there has to be a real turnaround in the decision-making; it has to be a little faster than it is now.
Mr Malkowski: Just one or two comments on two specific areas and some of the recommendations you mentioned. Your concerns regarding the Advocacy Act being established -- right now there are certain gaps out there that are not being served by many of the community agencies -- I think you talked about some of the advocacy that you do on that level. You see individuals or groups that kind of fall between the cracks, and do personal advocacy. Perhaps you could give me an example of that so that I can get a clear handle on that.
The second point is in relation to concerns about the labelling of individuals as incompetent and specifically, in relation to communication barriers that may have to be overcome, be it individuals who are deaf or multilingual considerations and so on. Often, I agree, many medical professionals will label individuals incompetent simply because they cannot communicate with them. Do you have recommendations on what should be considered when we look at modes of communication and how the assessments can be done with sensitivity to various communication modes?
Ms Titherington: The first question is with regard to a case example, I think, of where our day-to-day advocacy comes into place. I can think of one of the people I am working with now, an elderly woman who has a long-standing mental illness. I have known her for nine years. Her affairs now are under the public trustee. First of all, I had to do a lot of advocacy to have that arrangement put in place. Some of the psychiatrists were reluctant to make that decision as the person appeared sort of competent in the hospital, but she completely mismanaged her money to the point of losing thousands of dollars in the community.
That advocacy was necessary and important and I believe it has helped us to work with her further, particularly around repairing her house so that she could live in it. Then the advocacy needs were around where she would live, whether she should get a new furnace in her house, because for three years she had been heating the house with a gas stove, with the burners going. Advocacy around that kind of day-to-day living arrangement is often required, and no one else will pick that up except a front-line worker.
Then there is advocacy with regard to where the person would live and following the same person, whether she would continue to live in her house, whether there are some concerns of danger or whether she would live in a boardinghouse and if so, which kind of boardinghouse and what kinds of services were needed in that particular boardinghouse.
Then with the same client there will be an issue of consent-to-treatment because she is refusing some very important medical treatment for diabetes and another medical condition. If this new bill were in place, what would happen? If she continues to refuse the medication for these medical conditions when she is in the community, how do we deal with that? Right now we are trying to advocate for good medical care for her, but beyond that we cannot do much.
With regard to your second question, how do we sensitize assessors to the special communication needs of individuals when they are determining competency or incompetency, I do not think I can come up with some guidelines, but I think we have to write into the bills the importance of being sensitive and having the resources available for doing these assessments. This is particularly applicable to areas which do not have a lot of resources: non-urban areas, northern areas, small towns and cities, where it may be very difficult to find people who speak the same language or who know the Bliss symbol communication system and so on. I think it will be a problem that has to be given serious consideration.
Mr Wessenger: I would like staff to answer the comment with respect to chemical restraints, because I am unclear whether in fact there is any change in the law with respect to the use of them.
Ms Titherington: I did not address it in the brief. I am unclear too.
Mr Wessenger: I am going to ask ministry staff if they could respond to that.
Ms Auksi: In the Consent to Treatment Act the reference to restraint is essentially to retain what is in the common law allowing for restraint, but it does not specify what the nature of the restraint would be. There would be no reason to automatically preclude chemical restraint.
Ms Titherington: The Mental Health Act does allow for chemical restraint.
Ms Auksi: The thing is that the Mental Health Act is simply more specific about the issue of restraint, but it does not mean that a particular manner of restraint is precluded under the Consent to Treatment Act.
Mr Winninger: I would like to return briefly to a question by Mr Poirier. I certainly appreciate the implicit warning to avoid going the wrong way on Toronto's one-way streets. If you were to delay the implementation of Bills 108 and 109 and just implemented Bill 74 now, as some consumer interest groups have recommended, do you not run the risk that the advocates will become informal guardians without the kinds of procedural safeguards that a power of attorney or court-appointed guardianship would confer?
Ms Titherington: That is right. They may start working more into the social advocacy realm in which many of us front-line workers are already involved. Really this act is set up to establish advocates who do rights advocacy and advocacy informing people and gaining access to legal services. It may get things off to the wrong start if they do not have the other bills to work with. Also, it may be a little complicated to know how these new advocates will fit with the psychiatric patient advocate office if all bills are not put together. I see your point and I think it deserves further consideration.
Mr Robideau: However, there is no reason why the bill could not be introduced on a staggered, step-by-step approach. It does not have to be all or nothing. There are certain elements of the act that are really important and should clearly be set up in advance of Bills 108 and 109. That is simply what we are saying. I recognize that if you just plop it in all at once you could run into some difficulties, but we would like you to recognize that perhaps a step-by-step, staggered approach is quite acceptable.
Mr Poirier: We will need a break as a caucus because we are called. We have just been called for a special gathering that should last about 5 or 10 minutes. With the heating system breaking down yesterday and the clocks breaking down, whatever, we should be back here by 11:30. If I can ask for unanimous consent for a break for this half hour I would be most grateful. Our apologies to the groups.
The Chair: On behalf of the committee I would like to thank you for coming to give your presentation this morning. We will recess until 1130.
The committee recessed at 1103.
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LEARNING DISABILITIES ASSOCIATION OF ONTARIO
The Chair: This is just a reminder that we will be going until 12:30, because we have a substitute for Downtown Youth Services Agencies, Anne Fast, coming in at 12. Now I will call forward the Learning Disabilities Association of Ontario. Could you please introduce yourself for the record and then proceed.
Ms Nichols: My name is Eva Nichols and I am the executive director of the Learning Disabilities Association of Ontario. My organization is an advocacy organization that has been in existence in Ontario for almost 29 years. We advocate in all directions, as I shall touch on in a minute, for the 800,000 residents of Ontario who have learning disabilities. We were initially formed as a parent support organization and have gradually grown, as the children with whom we began have grown into adulthood. Today a large part of our work relates to the adult who has learning disabilities and has had minimal or no service in Ontario.
In the brief that we have written, we have outlined in some detail who are people with learning disabilities and have offered you some definitions. I am not going to spend time reading that to you now, but just so that you understand what kind of population I am speaking about, we are talking about individuals who are of average or above average intelligence, but who because of a neurological dysfunction perform way below what is expected in a number of different academic, social and behavioural ways and as a result face great difficulties functioning in society.
Some of these statistics that relate to the status of people with learning disabilities will explain why we consider people with learning disabilities vulnerable in today's society. There is general understanding and acceptance that learning disabilities affect approximately 10% of the population and most people, whether they are educators or not, readily accept that the most important first intervention has to occur in the school setting, because if youngsters with learning disabilities are helped to learn to cope with and compensate for their disability, their future success is much greater.
In spite of that, we have 73,000 students in Ontario currently identified as having a learning disability, which represents 3.8% of the school age population. That is a large number of children, but the other side of that is that 6.2% of the school-age population who, according to everybody, have learning disabilities do not even have the identification. The fact is that in the province today, if you do not have the identification, you do not get the services.
It is estimated through a series of studies, both American and Canadian, that between 50% and 80% of both young and adult offenders have learning problems, mostly learning disabilities which have not been identified and which have not been treated. Studies show that learning disabilities are implicated in about 50% of adolescent suicides. Some 74% of individuals with learning disabilities who do not receive adequate help will exhibit some significant mental health problems, such as chronic clinical depression, during their lives. Finally, it is reported right here in Ontario that adults with learning disabilities typically hold a job for three months and they are fired.
If one looks at that combination of statistics, without a question these people are vulnerable. Their vulnerability is compounded by the fact that there is very limited recognition of their needs, and numerous government services and programs which are in place to serve people who are vulnerable, who have disabilities, deny access to people with learning disabilities.
To give you some examples, the assistive devices program of the Ministry of Health by policy excludes people with learning disabilities. Respite care and special services in the home again by policy exclude people with learning disabilities. Finally, if people with learning disabilities go through some kind of vocational training program but are not able to be employed and self-sufficient thereafter, they cannot pick up any of the disability-related benefits or pensions, just because their primary disability is a learning disability; this at a time when we have legislation in this province through the Human Rights Code that specifically recognizes learning disabilities as a distinct group of disabilities.
Based on all that, our association, in spite of some of the recommendations in this brief to you, was delighted to find that we were going to have some consistent and systematic advocacy on behalf of vulnerable individuals. We were very pleased to see that learning disabilities were mentioned in the first draft of the act. It is unfortunate that the place where they were placed in the description of the various vulnerable groups is rather inappropriate, because learning disabilities are not a physical disability or impairment along the lines of diabetes or AIDS. In a sense it is a minor issue, but in a way it demonstrates exactly the kind of thing people with learning disabilities face: a lack of understanding and a lack of support.
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Currently the primary advocacy role for people with learning disabilities is fulfilled by our association. Our work really goes in three directions: systemic advocacy, making presentations to governments, serving on government committees and so on, which many of the individuals who are struggling along in society can look at and say, "Oh yes, that is all very nice, but really, what good does that do me?" Second, and much more important, we do a great deal of individual advocacy where we have volunteers -- we do not have sustaining funding to pay for these individuals -- who will go with families to school boards, recreation programs, court, physicians and anywhere else where they require help, and also help with adults who are perhaps facing discrimination in the workplace or in any kind of educational area.
Third, and this is a new area for us, we are very busily developing training for self-advocacy skills for the population we serve. The fact is that we certainly cannot provide adequate advocacy for 800,000 individuals when everything we do is funded through charitable donations. I recognize your work is not about money. I am only raising that issue to try and put into perspective the large numbers and the very little support there is. We feel that advocacy needs are very great for our particular population and we believe that through an advocacy system the government can produce and provide for them. There may very well be a great deal of help for people with learning disabilities.
I would like to touch upon some very specific recommendations we have made to you. I have already mentioned the fact that learning disabilities are placed currently, in our opinion, in the wrong category in subsection 15(1). Because of the very large number of people with learning disabilities and the very diverse needs they have, we believe it should be a separate, distinct category in terms of the work of the Advocacy Commission.
We would like to recommend that section 2 be revisited in terms of defining "vulnerable person." At the moment, one gets the impression that the person who wrote the document felt it was a black or white situation, an either/or. You are either vulnerable or you are not vulnerable. The fact is that vulnerability is along a continuum from the very slightly vulnerable to the very severely vulnerable and people throughout their lives and under different circumstances will vary as to exactly how vulnerable they are. There should be recognition of that.
In subsection 7(1) there should be greater emphasis on the whole business of self-advocacy and supporting and encouraging people to assume as much self-advocacy as is feasible, recognizing there will be times when their self-advocacy skills will fail them or when the system to which they are advocating is so recalcitrant and so difficult that they will need to call upon another person to help them advocate.
In section 6, where there is reference made to mental and physical disabilities, I would like to urge you to recommend that learning disabilities be also included. I recognize that the Canadian Human Rights Act talks about mental and physical disabilities as the two categories and we also know that in the minds of many, learning disabilities come under the mental disability category. We have no problem with that, provided it is accepted that it really should be included. But in many cases what we find is that people say, "No, it really isn't a mental disability and it isn't a physical disability," and therefore it is left out.
We would like to raise with you the issue of organizations such as ours which grew out of parent support activities. One of the greatest criticisms I have heard of this proposed act has been the fact that it puts the family into a very difficult situation and almost pits the individual who is vulnerable and who requires advocacy against his or her family. I am quite sure that was not the intent of this legislation and we are certainly sensitive to the fact that there are many adults today who could not lead the kind of independent lives they do if it had been left entirely up to their families. Again, I think there has to be some flexibility and a continuum of involvement for families, because in many cases for people who have learning disabilities and some other disabilities the involvement of their family continues to be a very important component.
I would like to make a couple of comments about section 36 which relates to the advocates and the kind of training that might be available for them. It is very important that these advocates really be well trained in all aspects of vulnerability, including learning disabilities, so they know exactly what kind of services, accommodation and support people with learning disabilities require. It is our experience that where people deal with disabilities, usually the primary areas are of course the obvious visible, physical disabilities, and many people feel they have completed everything in supporting people with disabilities when they have dealt with the issue of ramps and elevators and other such things. I recognize the training of advocates will go beyond that, but in the same way that we need more than ramps and elevators, we also need a great deal more in terms of training.
Finally, going back to the whole issue of equity, in a just society taking care of vulnerable individuals is a very important thing. But I think it is also important that whatever comes out of your deliberations and whatever legislation government adopts, it is supported with the availability of services. I cannot imagine a more difficult situation for somebody who acquires an advocate than when that advocate advocates vigorously for a service which is ultimately either not available or is denied to the individual because of the particular problem he has.
Mr Chiarelli: I am particularly interested in the issue of the coordination or cooperation between advocates and family members. Particularly, I want to point out that in a lot of the briefing notes and in Hansard the minister and government officials have indicated, and I want to quote, "In the simplest form, advocacy provides a voice for those who may have difficulty in expressing themselves because of a disability, whatever its nature, and who do not have the support of family and friends to assist them in doing so." The impression is left, with what the minister and the government are saying, that there is almost an exclusivity where the advocate is excluded if the family is there to give support. When I look at the act, it says almost nothing about the family. It encourages family participation but it does not say anything specifically excluding an advocate if there is family involvement with the vulnerable person.
What I would like you to comment on, if you can, is, in practice what has happened over the years if you have an advocate who is recommending a particular type of service or a particular type of protection for a vulnerable person and the family disagrees? In effect there is an agreement between the advocate and the family member to disagree on a particular course. What is the practice now for the advocate and do you see anything in the legislation which provides a precedence or a priority for the family member's opinion in terms of what is in the best interest of the vulnerable person?
Ms Nichols: The kind of advocacy that is currently available for people with very severe disabilities is not usually utilized by people with learning disabilities, so up until now the kind of advocacy that has been provided for people with learning disabilities and their families has been through our organization. The kind of approach we have taken in training people to be advocates is to work as closely as possible with the family, very largely because in most cases it has not been the adult who has come to us but usually the family. Even where we are talking about adults who have employment difficulties, one of the greatest difficulties for us is to convince the family that we really need to deal with the adult directly.
When it comes to any kind of a conflict in terms of services, because we do not have a legal status as advocates, generally speaking we do not recommend any one particular thing. A great deal of our work has been in trying to empower families to find what is the right kind of service and the right kind of programming for their children. Similarly, with the adult who is perhaps looking for something, we try to give them as much information as possible but not recommend any one particular issue.
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The reason we raise the question of what is going to happen relating to families is that we are already noticing that as a result of certain legislation there are some conflicts arising within the school system. Up to the introduction of the Freedom of Information and Protection of Privacy Act into the school system, the Education Act and its regulations stated that up to the age of 18, for an exceptional student, the parents were directly involved in determining what kind of special education services were there. While it does not mandate that the youngster should participate, it is certainly allowed if that is the choice of the family.
Once the act was introduced, suddenly things shifted. A youngster who is 16 years old is now in charge of the determination of his or her special education programs, etc. It is not so much that we have a problem with that, but rather the fact that school boards simply have not prepared for this. As young people turned 16, parents were not told that the only way you could continue to participate was if your son or daughter signed a release before they turned 16 to keep you informed. Basically nobody told the kids and nobody told the parents and suddenly we found that we were receiving a lot of calls from families saying: "What is happening? We are suddenly being excluded." In many cases, people with severe learning disabilities at age 16 are not ready to assume the whole task alone.
Our concern in terms of where all this is going to go, since this act is going to cover advocacy for the over 16, is that many people with learning disabilities at 16 are still in school and we hope they will stay there until they are ready to graduate. We would hate to see a situation where the family is excluded even further. I am not sure I have really answered your question.
Mr Chiarelli: You did to the extent that you basically explained to me how the system works now. If we can look at a hypothetical situation, if you can address your mind to the particular legislation and try to relate that to the circumstance where you have an advocate who feels very strongly on a particular course of action and you have a family or a family member who feels very strongly in a different direction, what will happen under this legislation?
Ms Nichols: As it is currently written?
Mr Chiarelli: Yes.
Ms Nichols: I would say that the primary decision will be made by the consumer and advocate. I get the impression, and I may be wrong on this --
Mr Chiarelli: Who is the consumer?
Ms Nichols: The consumer is the vulnerable person. In most cases, the kind of vulnerable people we are talking about do have the mental competence to make decisions about what is right for them, but they need support and guidance and so on.
The Chair: Some clarification from Mr Malkowski.
Mr Malkowski: I just want to clarify your point, Mr Chiarelli, when you were talking about the act itself. It clearly states the advocate can act as a resource and help people who need advocacy services. If the vulnerable person has family help or family support, then we would just leave him alone. We would not interfere. The second thing I would like to clarify is that the advocate would take direction from the vulnerable person's instructions.
Mr Chiarelli: My only comment is that I think there is an area here of serious concern, and that is that we assume in most cases that something will be worked out, that people are acting in good faith, but people acting in good faith can also have strong disagreements, as we all know from working in this particular building. I do not see any solution or direction in the legislation where there are strong disagreements between advocates and the family members. In particular, the response I received was that the decision would more likely be made by the advocate and the consumer, as it was described, and I think some people would prefer that the decision would be made ultimately by the consumer and the family member. I am not clear on that whole area myself, as a member of this committee and as a member of the legislature. I am going to look into it legally, more precisely from a technical point of view. In the course of these hearings I certainly want to get some feedback from people who are making submissions who are working in the field, but at this point in time I have a grave concern about that gap in the legislation.
Mr Malkowski: Again, just to clarify, the advocates will not be responding and making their views known. I just want to make that point clear.
Mr J. Wilson: Thank you, Ms Nichols, for your comments on behalf of people with learning disabilities. My mother is a special education teacher, so I have heard a lot of this stuff first hand over the years.
Something you did not deal with extensively in your oral presentation was the issue of cost, which is dealt with on page 7 here. I note there is a concern that there are scarce resources now in the system, particularly for groups like yourselves that are doing advocacy. My colleague Mr Sterling asked this morning that we get a list of not only the groups but the mandates and the current costs of all the different groups out there that are doing advocacy on behalf of the people of Ontario. Would you agree -- I assume you would, but I will ask you to expand on this section -- that we should not make a decision about a new advocacy system without knowing the context, without knowing which groups out there now are doing advocacy and whether or not we will be drawing money from those groups?
Ms Nichols: I would agree with you that it is important that before any kind of new administrative or bureaucratic structure is put in place, somebody should look at exactly what exists. Another point is that I think it is very important that there be much greater collaboration and cooperation among the various new systems that are being put into place.
Before I came here this morning, I was making a presentation on the employment equity plan. One of the things I was questioned on at some length was the fact that I suggested to the employment equity commissioner that for the employment equity commission to undertake tasks of advocacy and training at a time when we are looking to establish an Advocacy Commission and OTAB, the Ontario training and adjustment boards across the province, what I can see happening is that there will be superb structures which will go ahead and function and there will be no money left to serve people who desperately need the services. Clearly, as an organization, we are very concerned about that.
I made reference to the fact that everything we do is with charitable dollars. I would say to you that as far as, say, the corporate sector goes, it no longer sees advocacy as something it should be paying for. We are finding that the two areas of our association's work, which are counselling of families and individuals and individual advocacy, going with the family or the with the individual to advocate on his behalf, is something the corporate sector does not want to fund any longer.
Mr J. Wilson: Why would that be? What are the rumblings back from them?
Ms Nichols: It is partly that they see government taking that over, and partly, I think, that there is a certain amount of fear within the private corporate sector that the more effective we are in advocating on behalf of people with disabilities in the employment field, the more it is going to cost them. If one looks at it in isolation, you can understand that. When I go with an individual person who perhaps has been denied a particular job and we go and sit down with people, I usually am actually quite successful at convincing the employer that this person can do this job and that it is not going to be very expensive to accommodate him because he will only need a little bit. In the case of a person with a learning disability, it is usually a little bit, but if for every person who comes along, somebody comes and says, "If you just spent a little bit more, you can accommodate this person," they extrapolate from that and can see some major concerns. I think that is part of the reason.
Second, advocacy and counselling are not things on which you can put a name. If we want to make a video, publish a book, create a poster for public awareness, it is not difficult to get corporate money, because they can then point to it and say: "There is our name. Coca-Cola funded this." But when you serve people in a one-to-one setup or support them in advocacy, you do not say to the individual, "By the way, before we get going on here, you should know that McDonald's paid for half of my time and Coca-Cola paid for the other half."
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Mr J. Wilson: Maybe you could serve a Big Mac and a Coke.
Ms Nichols: Indeed. I think that what is happening is that for organizations like mine which do not receive sustaining funding from any source -- and that is not all bad, because it does give you a level of independence that perhaps you would not otherwise have -- it is a little bit scary that if there is going to be a public advocacy system and everybody will assume that all the advocacy needs will be met that way, but there are not going to be any more services for people with learning disabilities, then our people once again are going to be the ones who are knocking on the door and saying, "We need help."
As an example of what is happening, job coaches are a relatively new service that is now being provided to many people with disabilities. The Ministry of Community and Social Services will not provide job coaches for people with learning disabilities, however much it is needed.
Mr J. Wilson: That is really because you have been excluded from definitions to date?
Ms Nichols: That is right.
Mr Malkowski: Just briefly, there is a point I would like to clarify. You mentioned concern about the family members and the vulnerable person. It sounds as if when there was a disagreement, then the act would support the vulnerable person. I think the act does not want to cause problems between the family member and the vulnerable person. Do you have any recommendations for that kind of situation, if the family member and the vulnerable person are in conflict? How would we deal with that situation?
Ms Nichols: I am not sure I can recommend how we deal with them being in conflict, but one thing I think is tremendously important is that both the vulnerable person and the family be as well informed as possible about services and about support systems and about needs so you do not have a situation where people only have half the story and then the conflict arises. In my personal experience of acting as an advocate, I have found that if everybody knows all the information and you can sit down and really share the details of what is possible, you can arrive at a resolution that meets the needs of the vulnerable person and does not leave the family out on a limb. Unfortunately, with systems and structures such as school boards, for example, you very often find that people are not informed and things just roll on and then suddenly you end up with a conflict. I think information dissemination is a very important component of all this.
Mr Malkowski: So the advocate then could be the one giving the information to the family members and the advocate can be used as a resource to inform them?
Ms Nichols: Yes, especially if the advocate knows what is going on.
Mr Curling: Ms Nichols, you are well known for the kind of work you are doing. Also, you told me how exhausted you were coming back from employment equity.
You said many advocacy groups are around. Are you suggesting that the government, or this bill, should look into all the advocacy groups to find out where we can cut costs? We have human rights, race relations, workers' compensation and all the people advocating for the rights of individuals. Are you saying that maybe there is a lot of money floating around within there that could be coordinated and maybe the Advocacy Commission should be looking at all those areas before we decide to put money there, because if we set up the Advocacy Commission, as you said, maybe there will be no money there to give the proper service? Was I hearing that from you?
Ms Nichols: What I was saying was that before a decision is made as to how to proceed, not so much with the act per se, although obviously the act mandates the existence of the Advocacy Commission, but before a whole lot of money is put out to create the structure and then begin the hiring of advocates, it should really be looked at as to which are the organizations that are currently holding a mandate from the province to be advocates -- for us, for example, our letters patent state that this is what we are there for -- and what they are doing and whom they are serving and how efficient they are at doing it, before we go the next step of hiring a whole lot of other people.
For example, it would not make a lot of sense to hire a group of people to be advocates on behalf of people with learning disabilities that would duplicate the kind of work my association does, because I can say to you that what we spend is a minute amount of what might be spent by a group that is sort of part of the civil service. This is nothing against the civil service; it is just a fact of life. Also, we use volunteers a great deal of the time, and while some people might say, "Then aren't you giving the message that it's not very important?" I do not think so, because I think volunteers really do have a role to play in this. My impression is that the volunteers feel they are going to be disfranchised by this.
The Chair: Ms Nichols, on behalf of the committee I would like to thank you for taking the time out to give your presentation today.
ANNE FAST
The Chair: I would like now to call forward Anne Fast.
Mrs Fast: I got a call late yesterday and I was ill, so if things do not go exactly right, perhaps you can understand. I have difficulty seeing. I am going slowly blind due to diabetes and that, and I do not know whether my glasses are better on than off.
My daughter took sick around the age of 14, a very brave girl, and she went into the hospital. At that time they had another system of committing people. The police would take them before two doctors, not psychiatrists, and they would make the decision. Now things have changed a great deal.
I have had a great difficulty. I tried to organize some of the people. We felt we needed someone to represent us. However, the mental health association did not come to the meetings, nor did they try to help at any time. As a matter of fact, when we tried to organize again, they came in and broke up our meetings. Mainly, I should say, the mental health association is controlled by psychiatrists. Certainly in St Catharines it is. It is not controlled by anyone else. Of course, they have the little ones working down for them.
Actually, I will go back to the other time, not too long ago, in 1989, when my daughter was taken by the police twice to be examined and she was turned down twice. I was living in another part of the city at that time -- no, another city -- and I could tell from on the phone. I had seen her twice when I went to the justice of the peace, but I never prepared myself for what I saw when I went into the hospital. She looked 90 years old. She had buck teeth. I could not recognize her. I said to the nurses, "Hasn't anybody been in to see her?" This was a Sunday night. She said, "We tried on Friday night, but he said he would assess on the Monday."
There was a clear case of malnutrition -- emaciated. She had everything. I tried to get him off the case. He would not get off the case. He was determined that he was going to have his way. It took a long time before she regained her strength. She had not eaten for I do not know how long. When that psychiatrist saw her the Friday night, he should have had enough common sense to put an IV into her arm immediately. The nurse did it. It was ordered over the phone on the Sunday. She went all that time. When we had a review board meeting, I could not believe how a person could live with all those illnesses -- her feet swelling and all that stuff.
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Dr Grant said, "We took her the time when we should have." What they are going for is imminent danger. They are not following the Mental Health Act. It has been done in Toronto; it has been done in Hamilton. What does "imminent danger" mean to you people? I would say right away. Why they are getting away with it I really do not know. The police will bring them there under the Mental Health Act. The psychiatrist has the role of mental health -- imminent danger. I do not know. Imminent danger, there is no -- they said they do not know how long. Some say one day, two days. I think this is something that should be picked up. There are too many people on the streets because of this imminent danger. I think as long as this is allowed to go on people will die.
I brought it up before the college. It is going to be a long time before the college is ever going to acknowledge that mentally ill people and their families have a right. Then it went to that glorious Health Disciplines Board. They are worse. I understand they are locked in, but I wish they were locked out because I did not see one intelligent one there on the board or any intelligent questions asked. As it stands right now, I am going to write to Mr Rae again and the Ombudsman to see if we cannot take it before a legislative committee, which I think we should.
I am going to say again that about a year ago my daughter was hallucinating very badly. She called 911 and said the hospital was on fire. I guess all the trucks went down and eventually the police charged her. I had to tell her, "Nancy, you've got a charge against you by the police." She said, "I didn't do anything wrong." She does not know.
This lawyer came upon the scene. He had one remand. I said, "Look, my daughter's getting sicker and sicker." And then a second remand and a third remand. I said to the judge: "My daughter needs to be in a hospital. She needs to be in a hospital now." The lawyer said: "Remand, remand. I'm going to get right at it with the" -- what do you call them? Anyway, he said, "We're going to fix it all up with the crown attorney." The next time, the fourth time, remand again. I think I went to court about seven times. After the second time she could not go; she was too sick.
Finally it ended up that Nancy went to jail. She was saying to me: "Mommy, why am I here? What have I done?" I found out before the last hearing that this lawyer was sitting on the board of directors with this Dr Peter Grant of the Canadian Mental Health Association, and there was the connection. This Dr Grant has been after me for years for speaking out and Nancy paid the penalty for the sins of her mother for speaking out. I am hoping this is going to be looked into.
One policeman said, "If you are so worried, Anne, go to a justice of the peace." I went to the justice of the peace and he said to me, "You haven't proven to me that your daughter is in imminent danger." Then I went to another one. He was fairly rational for a while and he asked me questions over and over again. He said, "What's happening right now?" How could I know what was happening right then? My daughter was someplace else. I am not a psychic. I thought that was terrible.
I am going to ask somebody to look at this trial and hear those two tapes because I think this is something people should know. It is going on. This imminent danger is going on. It is not right. The police are mad; the police bring them there. At first Nancy was in jail in St Catharines and then she was transferred to Hamilton. I told the police, "It's that mental health association." He said, "You've got that right, ma'am." A lot of the policemen know that. They have power; they are like a giant. If you keep feeding the giant, it is going to get bigger. They are fed money through the United Way.
I sent for an income tax report of the mental health association in St Catharines. I could not believe, for the little they were doing, how much money they were getting, and not only that, they had a grant from someone else. I think these organizations should be looked into. Right away when they say "mental health" they think, "Oh, we're doing all these great and wonderful things." They are doing them with other people's money. They are not using their money. I think it should be looked into.
Right now I still do not have help for her. If you were to stay with these people when they are hallucinating and having delusions, it is frightening. I was there for three hours with her in her apartment. She cried and laughed and cried and laughed. If a psychiatrist or anybody else took 10 minutes, that is all it would take. It would change your minds about a lot of things.
I have been called the worst things. That psychiatrist spread around that I was mentally ill. Of course he denied it in the report. The things he wrote about my daughter were "foul" and "filthy." He had on there, "She is filthy." My daughter, when she gets mentally ill, does get dirty. That is part of the disease. It is not with everyone; with my daughter it certainly is. Her hair is not combed at all. She looks bad. He said she is violent. I think 12 people he wrote -- she is violent. That is all you have to say, because that word, "violent," is going to turn somebody off. "Violent, filthy and dirty" is what he wrote. You just turn people off.
I am in favour of an advocate. I wish I had one right now to take the burden off my shoulders. I have angina in my heart. My arteries are no good. I have fever as a result of rheumatic fever as a child. I am a diabetic with severe hypertension. Consequently I have a haemorrhage in both my eyes. They keep telling me, "Mrs Fast, keep your high blood pressure down." Whenever something like this happens, there is not one soul we can turn to. If I had someone who would come in and say, "Anne, I'm going to take over for 10 minutes," I would really be happy. My daughter is out there somewhere and she needs help right away.
The Chair: Thank you, Mrs Fast. If you would not mind, would you allow time for questioning now?
Mrs Fast: That is fine.
Mr Curling: Have you brought this matter to the Ontario Human Rights Commission, or have you put your case to someone? I am talking about another form of advocate now, before this formal advocate group is in place.
Mrs Fast: No, I have not; just to members of Parliament. That is all. I tried the Ontario Human Rights Commission and they said it was not their job to do that. The Ombudsman, too, cannot look into it very much. There is nothing out there. We need a committee that is going to look into all of this. It should not go to the Ombudsman's office. It should not go to the College of Physicians and Surgeons of Ontario. For the mentally ill they do nothing. There should be a committee that will say, whether he is a psychiatrist or not, or a nurse, "You treat a person in a humane manner." I had a bad experience with the Ombudsman's office. I do not think they are worth their money.
Mr Curling: May I make a suggestion? I am not quite sure if the committee itself plays this role, but it seems to me there are two important things you mention here. One is the immediate help you need for your daughter and what is happening. I think there are many of us around here who play the advocate role from time to time in assisting constituents to get through some of those very difficult times. The other aspect is, and you have made the case of saying it, is how important an advocate could be even when there are family members around, like a mother here. The advocate could play an important role.
My suggestion is that maybe you could leave the details with the Chairman, because of the formal process, and see how you could be helped and what is happening in that case. I have no other questions. I would just say that the point you make actually is one of the reasons for the importance of the Advocacy Act.
The Chair: On behalf of the committee I would like to thank you for coming and giving your presentation. I must say that I am quite glad you did not have an advocate today because nobody could speak it the way you did.
Mrs Fast: Thank you very much. I could have stayed here for 10 hours really. We do need help. The families need it. The people who are mentally ill need it. I hope some good will come out of this.
The Chair: We now stand recessed until 1:30 promptly.
The committee recessed at 1221.
AFTERNOON SITTING
The committee resumed at 1338.
ADULT PROTECTIVE SERVICES ASSOCIATION OF ONTARIO
The Chair: Good afternoon. Could you please identify yourself for the record and then proceed.
Ms Pearsall: Good afternoon, my name is Ginny Pearsall.
Ms Haveman: I am Alice Haveman.
Ms Pearsall: I would like to thank the members of this committee for providing us with this opportunity to address them. I would also like to take this brief opportunity to introduce ourselves. Alice Haveman is an adult protective service worker from the Hastings and Prince Edward counties area. She covers central Hastings, which includes the villages of Tweed, Madoc, Marmora, north to Gilmour, south to Foxboro and the vast rural area in between. Alice has been involved in adult protective services since 1983 and currently sits as vice-chair of the Adult Protective Services Association of Ontario and chair of the southeast chapter.
My name is Ginny Pearsall. I am also an adult protective service worker from the Hastings and Prince Edward counties area. I cover exclusively the beautiful island of Prince Edward county. I have been an adult protective service worker for the past six years and also served as a past executive on the provincial board.
I would like to point out at this point in time that it is a prerequisite within our agency that an adult protective service worker live in the same community in which he or she works and supports people.
The standing committee is in possession of two previously submitted papers from our association, one dated September 1991 regarding Bill 74 and one dated October 1991 regarding Bills 108 and 109. Our colleagues Mr Gianni Corini and Mr Steve Tennant will be expanding upon Bill 74 later this week. Today Alice and I will be expanding upon the second submission on Bill 108.
We are here representing the Adult Protective Services Association of Ontario but, more important, as adult protective service workers. It is our role to advocate on behalf of adults in the community who have a developmental handicap and as such we must follow the direction given to us. We support the stand of People First in their unanimous resolution to oppose all forms of guardianship law. We hope to substantiate this stand within this document and provide this committee with specific examples of our concerns around some sections of Bill 108. I would also like to point out at this time that the Centre Hastings Support Network Inc endorsed the views we will be putting forth within this document.
We urge the committee to seriously listen to all groups of vulnerable people representing themselves or those persons representing them under the direction of vulnerable people. These are the very groups Bill 108 is attempting to protect and their input is in our view the most important, as it is their lives that will be impacted by this act.
Ms Haveman: I am just going to back up a little bit and give a very brief summary of the adult protective services program and let you know that when we say APS we mean adult protective services. The program itself has been in existence since 1974, specifically to support adults who live in the community who have a developmental handicap. That means that persons who reside in group homes, institutions, nursing homes etc are not covered under our mandate.
This is a voluntary relationship in that the individual must consent for us to assist him and has the final say in any direction or decisions that are being made. The major emphasis of the APS role is to provide information and options to assist the individual in directing his own life. This generates a trusting relationship with respect and dignity in which the individual can express himself safely and, with his consent, the APS can then assist him to pursue what he wants with relevant other persons by either accompanying and supporting him to vocalize, which is self-advocacy, or speaking on his behalf, which is advocacy. I have to emphasize that when we say speaking on their behalf, we mean doing and saying what they have previously told us. It also creates circumstances where we are in fact assisting individuals to do things which we as individuals personally do not believe in, but we must continue and support them because it is what they want.
Bill 108, we feel, circumvents the progressive adult protective service system and turns back the clock to a time when vulnerable people were denied their basic rights and privileges. While the protection of vulnerable people is the intent of this piece of legislation, it falls short of meeting this goal and leaves individuals in the position of proving their capabilities in the face of an ambiguous act that is open to many interpretations.
In early 1970 the Conservative government studied guardianship legislation. That basically came out of the fact that there were a lot of institutions closing, a lot of people moving out of institutions, and their concern was, how are these people going to exist in the community? The result of looking at the legislation was not to create a new act; it was in fact to develop the adult protective service program, recognizing the philosophy that vulnerable people are capable of making decisions but many times they lack information, options, ability to express themselves and supportive relationships due to negative stereotyping. The APS program has proven that this philosophy is an alternative to guardianship legislation, as it has successfully promoted dignity and self-determination for people labelled as developmentally handicapped. Creative, community-based efforts that facilitate the development of support networks for vulnerable people eliminate the need for guardianship legislation.
The following is an example of a lady who lives in our community, in a small village with approximately 1,500 people. She is 64 years old. She was widowed when she was approximately 34. She had four daughters, the oldest of whom was eight. She did have five; one of them drowned about a month after her husband was killed in an accident. She has never had any relatives to rely on. She has a sister who lives in the Oshawa area.
Mrs Marcus had suffered a brain injury when she was very young and as a result she has epilepsy. She also has very specific impairments of the brain. She hardly remembers anything. I can go into her house. She knows me quite well when she sees me. To remember what my name is -- she would not remember. To remember to call me if something happens, most times she does not remember. To know to call the police, to know to do a lot of things, she does not know how to do it. She cannot write. She can sign her name.
How can an individual who lives with these impairments survive in a community by herself? She lives in her own home. She cannot balance her chequebook. She has no idea about income tax and she has many things that she is incapable of doing.
The reason she maintains herself in our community is because the community assists her. There is a list of things here the community does to help her, right from the pension cheque directly deposited in her bank account; they pay her phone bills and her taxes; they take money out when she asks for it; they fill out the slip. If there is a cheque that comes through they consider might be questionable, they give me a call as the APSW and say, "Maybe you should take a look at this before we make payment on it." She comes to me when she has a purse full of bills. She troops off to the post office and comes walking through the door and says: "I've got these letters. I don't understand them. Please help me figure them out." The hairdresser calls her every Friday and says, "Your appointment's in an hour." Meals on Wheels delivers meals to her Tuesdays and Thursdays. She has frozen meals the rest of the week so we know she is eating properly. The Victorian Order of Nurses come in once a week; the homemakers are in once a week. The grocery store delivers her food. Church members get her back and forth to church. The town ensures that her taxes are paid. They come to her door and say: "It's time to pay your taxes. It's time to get a new dog tag." The entire community knows who she is and where she lives. If she falls down on the street with a seizure, people put her in their car and take her home.
Over the last couple of years she has spent some time becoming confused, concerned. People are taking things. The OPP became concerned and basically came roaring into the office one day and said, "Who takes care of this lady?" Whereupon I stood up and said: "Well, nobody takes care of her. She sort of does it herself." That was not very clear to the OPP. They felt that someone should be making decisions for her. We got together a meeting of people in her life, including her family members -- her daughters all live in the Toronto area now -- and came up with some very clear decisions about who was going to help when, telephone, cheques, the whole nine yards. Then I went back to the OPP and said: "Come to our brown-bag lunch. Please ensure you're there. We've got someone from Alzheimer's, someone from the seniors' program. Come and hear what they have to say." The OPP then said, "Okay, how can we help?" They turned around and started doing police checks, driving by her house, making sure she was fine. It all works together very well.
The next step was that we tried to decide, how are we going to establish why this lady is becoming more confused? There is an issue here. It is not all the time; it comes and it goes. How do we find out?
We decided we would send her to the local psychiatric hospital to have the psychogeriatric team take a look at and see if they could figure out the reason. Their recommendation was nursing care: "Put her in a nursing home. She can't survive on her own. She can't remember." I remember their exact words were, "She can't add two plus two, and she cannot repeat a statement back to me when I say it to her."
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This lady is still living in our community. There is no guardianship to take away the independence she treasures. She is aware of the areas in which she needs other people and must depend on them, but she also knows that she directs her own life with the help of those she trusts. The APS program has fulfilled its mandate of advocacy and support and has assisted this lady to continue to live in the community she chooses and in the manner she wishes, with the ability to maintain her rights to make her own decisions with dignity and respect.
Ms Pearsall: It must be stated that the Substitute Decisions Act is, at best, an archaic piece of legal verbiage that is in direct conflict with the Canadian Constitution and the Charter of Rights and Freedoms. It manages to protect those around vulnerable people but in no way supports the rights of the individual who is vulnerable. It does in fact force vulnerable people to prove themselves yet again. The definitions of "incapable of managing property" and "incapable of managing personal care," sections 6, 25, 46 and 55 respectively, on which the entire act is based are ambiguous and open to such a varied range of interpretations that every person currently supported by an APSW in Ontario could conceivably be found incapable.
We know this is not true. To suggest that the advocates proposed through Bill 74 will be able to effectively assist each and every person to prove they are capable is unrealistic. The basic reality of some 150 advocates to perform the roles as outlined within Bill 108 and Bill 109 across the province is nothing less than ridiculous. The approximate 175 APSWs now in place find it extremely difficult to meet the advocacy needs of persons with a developmental handicap who live in the community. This does not include any persons who reside within institutions, group homes, rest homes or nursing homes. It is inconceivable to imagine the new advocates will be physically able to protect this group plus the remaining population of vulnerable people in Ontario.
It can also be perceived that every residential program in Ontario will consider it necessary to protect its agency and demand that all persons living in its facilities must have a substitute decision-maker. Forgetting the impact this mass-incapacity finding has on vulnerable people, this policy realization will create a tremendous influx of applications the advocates will not be able to address. While current residents are being processed to obtain a substitute decision-maker, applications to residential facilities will be denied unless one is already in place. With waiting lists now at two to three years, this is a devastating vision. This act will create a legal paperwork process and a bureaucratic nightmare with a vulnerable person potentially having three new strangers, or advocates, suddenly in his life: one to assist with the application for guardianship, one for case management services and one to address the systemic issue involved with the first two advocates and the application process.
Ms Haveman: For those of us in society who may never have our capacity to make decisions questioned, this potential may not be a concern, but for those people already labelled, an inappropriate application and/or finding of incapacity is a disturbing reality. Just as a label of "mentally retarded" gives society a perceived right to make inaccurate assumptions and judgements, a finding of incapacity to make decisions may be misinterpreted and provide people such as physicians, social workers and family members the ability to make intrusive decisions about an individual.
Ron grew up on a small dairy farm. He turned 48 last week. He was born the youngest of six daughters -- the son who finally arrived. At the age of one he contracted a high fever and as a result is marginally developmentally handicapped. He attended a local one-room school and learned how to run his family's farm. When his siblings left home and his father passed away he continued to run the farm with financial assistance from his mother's school teacher pension. Ron was just another farmer down the road at the local co-op, the sales barn and in the neighbourhood. In 1981 his mother passed away, leaving the farm and everything on it to her son, trusteed by three of her daughters. After five years the trustees, Ron's sisters, decided the farm was not making any money and sold it.
What happened to Ron? They bought him a small house in the country, arranged for a trust company to invest the proceeds of the sale -- which was over $100,000 -- receive and pay his hydro, telephone and taxes and send $350 to a grocery store which was 15 miles away from his home.
It is difficult to appreciate the indignity of standing at a checkout counter and having someone tell you that you do not have enough credit to buy what you have and you must put things back, especially when you do not even know how much was there in the first place or when it arrived at the store; to have your sisters call and tell you your hydro and telephone bills are too high when you have never seen a bill and they will not send you one; to have no cash in your pocket at all so you cannot even buy a cup of coffee, but you have to come up with money to pay for your car insurance and to pay for your gas as you are living in the country; to be asked to sign a lease in your best interests that states that if the home is not clean to exact specifications -- if visitors stay overnight, if animals are allowed in the house, and there is a list of about 12 different things -- your sisters will evict you from your home in 20 days, a home paid for by money from your own estate and left to you; to not understand the document and trust the good intentions of your sisters, and have them refer to the lease as they put on white gloves and go through your entire house, get down on their hands and knees and smell the carpet, open up your cupboards and look through; to treat you as retarded, send you no cash and tell you to get a job in a depressed area. You have no skills but that of a farmer.
To this day Ron has an estate valued at over $144,000 and is on welfare. This is because the local municipality has agreed to grant him welfare barring the legal process in which he will be expected to pay back. The APSW program is assisting with legal intervention around the will, the inappropriate trusteeship and the denial of FBA disability. All of this intervention with him has not stopped the process of turning a farmer into a vulnerable handicapped man. People who knew him while he was on the farm have commented on how downhill he has gone. The inference from his siblings that he is not capable has caused him to question his capacities and the new community sees him as retarded. A productive citizen has been turned into a vulnerable person by the implementation of "protection for his own good" trusteeship which totally disregards his abilities and expressed wishes. All this while Ron now contemplates suicide.
It is our request that the standing committee on administration of justice seriously consider the potentially devastating effects of enacting legislation that will lead to the removal of decision-making rights of people who are already experiencing discrimination and diminished social status. The time and energy required to endure the capacity review process could and should be used for facilitating the development of support systems for people who may not have natural access to such support or need assistance to organize support that follows their wishes in an informed manner. This alternative will also prove less costly to the taxpayers of Ontario.
As stated in our earlier submission, APSAO continues to have serious concerns about the development of partial guardianship. Drawing your attention once again to the definitions of "incapable," the act leaves no sound legal parameters for the vulnerable person, his advocate, the person making the application or the court to base a judgement on. This leaves the door open for professionals, families, the assessor and the courts to perceive that partial incapacity is the least intrusive finding and not as bad as complete incapacity. We put forth that any finding of incapacity at whatever level is intrusive and in no way benefits a vulnerable person. The realism of partial guardianship for Ron fully supports this.
Ms Pearsall: I would like to speak now on the assessment process. The definition of "assessor" is again ambiguous and open to interpretation to suit the individual circumstances of the applicator. The definition has a lot of words but in essence does not mean or say anything. The definition reads: An "`assessor' means a member of a class of persons who are designated by the regulations as being qualified to do assessments of capacity." Bill 108 is the regulations and there is no mention of whom this class of persons is except to mention on the last page that the Lieutenant Governor in Council may designate this class. He or she may also prescribe forms and prescribe a fee scale for compensation of guardians, which conjures up many visions of perversions.
We have pointed out the inappropriateness of the psychiatric field in assuming this role through Mrs Marcus's experience with the psychiatric field. Many other examples could be provided. To suggest that the medical field of family doctors is a viable body of available assessors is also unrealistic. This overburdened group of professionals must rely on information provided by those accompanying a vulnerable person, as time does not allow them the privilege of getting to know the individual in order to arrive at a knowledgeable decision. Do we create yet another body of trained professional assessors to meet the needs of this act in the face of today's economy?
The introduction of this act without specification of qualifications and/or training for assessors, including written clauses for relationships to persons in question and the applicant in terms of conflict of interest, is a serious omission.
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According to this act, the assessment process is only applicable when the person is admitted to, or resides in, a psychiatric facility. There does not appear to be an assessment process in place for those who have always experienced difficulty in expressing their wishes and have always been vulnerable. It appears they receive court-appointed guardians, based on sections 25 and 55, which are again ambiguous and cross-referenced to the definitions of "incapable." It would appear the vulnerable person's only course of action is within the court system. However, there is no reference to the vulnerable person being able to choose whom he wishes to represent him or whom he wishes to participate in the investigative process addressed in subsection 69(1).
It should be a mandatory part of this act that interviews take place with people of the vulnerable person's choosing during the information-gathering stage and this document be sent to the public guardian and trustee's office with the other declarations. Further, it should also be mandatory that the vulnerable person sign the original application, with the advocate as a witness, before the document is forwarded.
There is also no section within this act that allows for the vulnerable person to choose whom he wishes to be his substitute decision-maker, or avenues to refuse others' choices. We must dispel the myth that all family members have the best interests of relatives at heart. While we do not negate the many positive relationships within families, we must also recognize that family members are not excluded from collusion, promoting self-interests, or physical, sexual or financial abuse.
Any form of guardianship legislation must have, included within the act, written clauses to consider the vulnerable person's wishes as to whom he feels would act best on his behalf. It must also contain clearly written statements as to how an individual can contest choices made by others. To do less would totally remove all of the individual's rights as a Canadian citizen.
Ms Haveman: In this country people are assumed innocent until proven guilty. This act treats vulnerable people as criminals without allowing them the ability or resources to offer a defence. Sections 73 through 76 force an individual to a complete invasion of privacy without consent, explanation or support throughout the process. Clauses 75(2)(a), (b) and (c) use the words, "submit," "permit" and "attend," speaking more of a person who has committed a criminal act rather than someone who is in need of assistance to understand alternatives, help available and protection.
The act goes on to speak of the vulnerable person being taken into custody, which further accentuates the individual's feeling he has done something wrong. In other existing legislation it is recognized that the offender is to be removed, not the innocent party; the onus is not put on the innocent to prove he is or is not capable because he had, up to said point, chosen to stay in what we deem as an unsafe environment.
The illogical step of this act is to protect the persons responsible for the neglect and subject the victim to complete invasion and life-changing bureaucracy without his consent. We then take the major leap of immediately subjecting the victim to legal questions of his capacity to make decisions. Do we also bring every individual in a battering relationship to court automatically once we have "rescued" him to ensure he has substitute decision-makers to stop such a situation from happening again? Has the battered-wife syndrome and the Stockholm syndrome taught us anything, or does this just apply to what we perceive as capable people?
The government of Ontario must follow the recommendations put forth by the courts following the Joseph Kendall trial and enact legislation that ensures a process to remove and charge the perpetrators of abuse and neglect of vulnerable people so that the victims are not the individuals to experience the indignities of legal intervention. The Ontario Provincial Police must be given the legal backing and mandate to enact this, much as they have recently been given within abusive spousal relationships.
The final indignity brought about by this act is that after individuals have had their right to make decisions, in whichever form, taken away, they do not have mandatory access to reports of any kind. Section 64 states that the keeping of proper records and the writing of an annual report must be performed by the substitute decision-maker, but it does not require that this report be submitted unless requested and does not specify by whom this request can be made.
The submission of an annual report to the vulnerable person, the person's advocate, the Advocacy Commission or public guardian and/or trustee's office should be mandatory, and I underline here that the number one person should be the vulnerable person.
In summary, the Adult Protective Services Association of Ontario fully supports the implementation of an advocacy system for all vulnerable people in Ontario. Bills 108 and 109 make many references to the advocate being involved in the legal processes of these two acts, which we perceive to defeat the purposes of advocacy. Effective advocacy requires a trusting relationship. With the Advocacy Act tied so closely to the Substitute Decisions Act and the Consent to Treatment Act, the role of the advocate may rapidly evolve into that of an expert in these two legal aspects. This detracts from the original philosophy and premise, being to support individuals and to give them opportunities to direct their own lives as much as possible. Many vulnerable people require time to express themselves and/or someone to spend time with them to learn their language, their personalities, their hopes, their dreams and visions for their own future and thereby receive their instructions. None of these acts allow for this process to take place.
The word "ambiguous" has been used many times throughout this presentation and it, regrettably, is the best adjective to describe the legal outline and ramifications of Bill 108.
The Substitute Decisions Act leaves vulnerable people in the position of proving innocence in the face of guilt. Even the language of the act, after the application is made, immediately calls them incapable. It leaves them more vulnerable to invasion of privacy, subject to yet further discrimination, diminished social status, respect and dignity, no legal right to choose whom their representative will be, be it in the form of guardian, substitute decision-maker or advocate. There remain no legislated avenues for a vulnerable person to receive community-based creative support, which has proven to successfully circumvent the need for guardianship in the past and is the stated philosophy of the current government. This new act appears to have created a new title for the word "guardian" by using "substitute decision-maker" and has fostered the notion that people can be "partially incapable" and need legislation and the courts to deem them so.
It is the belief of the Adult Protective Services Association of Ontario that the tremendous impact of Bill 108 becoming law on the lives of vulnerable people in Ontario must force this creation into retirement once again. If even one concern we have raised can be seen as a possibility, it should be enough to prompt us to review Bill 108 in terms of "protection for whom?"
The Chair: Thank you very much. You went slightly overtime but I will allow one question from each of the caucuses if they so desire.
Mr Poirier: No, that is okay. The picture is quite clear. Thank you.
The Chair: On behalf of the committee I would like to thank you for taking the time out to appear before the committee. Oh, Jenny, sorry.
Ms Carter: You weren't looking at us, Mike.
The Chair: The problem is that there are three people who have indicated they would like to speak.
Ms Haveman: We will answer fast.
Mr Winninger: I will defer to Ms Carter.
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Ms Carter: The thrust of what you had to say was mainly directed at Bill 108 and I think your point is very well taken. Your case histories were very powerful indeed. The man you mentioned, Ron, is in this situation under existing legislation. He has a problem. Would the Advocacy Act not help him solve that situation, because he would then have somebody to speak to him from his side about the inappropriate guardianship under which he now is?
Ms Haveman: First, it is not a legislated guardianship he is under; it is under the will left by his mother. Second, there is an advocate in place in the form of an APSW who has taken legal intervention. The example more or less was put forward because his financial and property management has been taken away from him by his mother's will and that portion taken away from him has led to his becoming virtually incapable, or his perception of being incapable.
Ms Carter: But I am wondering whether under Bill 74 the advocate would not in fact have more power to effect change in that situation than is now possible under the APSW.
Ms Haveman: It is a legal question. It is a legal court question. Fighting the will is really what it boils down to.
Ms Carter: But advocates are going to be able to effect systemic change where they find there are problems out there and that might be one place where that over time might happen.
Ms Haveman: That is quite possible.
Mr Poirier: I quote you when you were describing the situation with Ron, and I know you meant no harm or insult, "to have no skill but that of a farmer." I know what you are saying, but coming from a farm background --
Ms Haveman: So do I.
Mr Poirier: I think a lot of the farmers have skills.
Ms Haveman: Yes, you know what I meant.
Mr Poirier: Right.
METROPOLITAN TORONTO ASSOCIATION FOR COMMUNITY LIVING
The Chair: I would like to call forward next the Metropolitan Toronto Association for Community Living. Good afternoon. Could you please identify yourself for the record and then proceed.
Mr Reynolds: My name is Fred Reynolds. I am the executive director of the Metropolitan Toronto Association for Community Living. I would like to introduce the speakers today and give you a little bit of background about our task force at MTACL.
The board of directors decided to form this task force some time ago because of our interest, obviously, in the legislation. MTACL also belongs to a coalition of agencies across Metropolitan Toronto. It is important for you to know that the MARC group, the Metropolitan Agencies Representatives' Council, was invited to appoint members to this task force and quite a number of the over 50 agencies in the MARC group had input to what you will be hearing today. Specifically, they had members on the task force from York Community Services, Reena Foundation, Surrey Place Centre and Surex Community Services. Other interested people also were involved in the task force.
I would like to introduce to you the chairperson of our task force, Lynn Hastings. Lynn is a board member of MTACL, a lawyer and has a family member who is developmentally handicapped. The other person who will be speaking to you is Cay Shedden. Cay is the past president of MTACL, has a son who is developmentally handicapped, is a businesswoman in her own right and has had considerable experience both with the Metro association, the Ontario association and the Canadian association. The gentleman between these two ladies is Graham Baldwin, who is their staff support person to the task force. Lynn Hastings will start off on behalf of the task force.
Ms Hastings: Good afternoon. The task force would first like to address its concerns with respect to the Advocacy Act. We believe that as it is presently drafted, the Advocacy Act may not apply to those persons most in need of an advocate. There are a number of sections in the act which require the vulnerable person's consent or imply that the consent is required. The task force is concerned that if the vulnerable person does not explicitly give his or her consent in traditional ways, an advocate may not be assigned to that vulnerable person. Support for this position may be found in clause 7(1)(b) and subsections 24(1) and 30(5) and (6).
If this interpretation is correct, those vulnerable persons who are most in need as a result of the severity of their handicaps will remain isolated simply because they are unable to give instructions in traditional ways. The act must provide for non-instructed advocacy to ensure that those individuals with the most serious handicaps will be given a voice.
Some say that those persons should and will be assigned a guardian under the Substitute Decisions Act, but a guardian is not an advocate. A guardian, according to section 6 of the Substitute Decisions Act, is concerned with the health, nutrition, shelter, clothing, hygiene or safety of the vulnerable person. An advocate, on the other hand, will strive to ensure that the vulnerable person's life is enhanced and to make sure changes are made in the vulnerable person's life that will allow the vulnerable person to lead a more rewarding and fulfilling life.
The second section in the Advocacy Act which concerns the task force is section 15. This is the section which describes the organizations which will participate in the nominating process to the appointments advisory committee. The association for community living has as its members, parents, relatives and friends of those who are developmentally handicapped. Because subsection 15(2) requires that an organization which wishes to participate in the nominating process has, as a majority of its members, persons whom the organization represents, the association for community living will not be able to participate in the nominating process.
Again, it appears that the most severely handicapped of vulnerable persons will be ignored. They will not be given a voice to nominate those persons who will ultimately be making decisions which affect their own lives. To ignore the fact that family members, partners and friends positively influence the life of a vulnerable person is to ignore the best advocate whom a vulnerable person often has. The task force believes that subsection 15(2) should be amended to include organizations which also represent the family or friends of the vulnerable persons.
I would like to now call on Cay Shedden -- as you have been told, a parent -- to relate to you how the Advocacy Act as presently drafted would have affected the life of her son.
Mrs Shedden: Thank you very much. It is a great pleasure to be with you this afternoon. I would like to introduce you to my son John. John will be 30 in March of this year. He participates at the present time in horseback riding, swimming and goes to a day program, but John is one of the most vulnerable of all handicapped people living in Ontario.
John at the age of almost 30 is not toilet-trained, does not totally self-feed, is non-verbal and does not communicate in any way other than his eye contact and his expressions of pleasure. John, had we listened many years ago to people who would have become his guardians, would have ended up in places like the Huronia Regional Centre where people like John were confined 42 to a room, two staff people and no opportunities to be in the world. John has lived at home. John is part of his community because instead of having a guardian for a mother, he had an advocate.
Advocacy in John's life has been essential. In the beginning he was not even accepted by our association. He was not accepted into school. He was not a part of the community. There were no services anywhere. Because a group of us who chose to keep our children at home advocated on their behalf, they now live successfully in the community, are contributing members. You cannot believe, unless you take someone like John for a walk, what he gives to the community.
It is the sense of caring. In fact, this morning when I was at the hairdresser's I had someone say that she had not seen John for a while and ask what was wrong with him and where was he and was he well and had he had to go back into hospital. He has made the community a very caring place. When we opened the group home for John seven years ago, the community was not sure they wanted a group home on their street. This is a very nice street. Margaret Birch lives there. Ed Moran, who was the head of the OMA, lives there. It is a very nice street.
The people knew John and they felt that John had the right to live in the community, so our community became advocates. Not guardians who worried about whether he was fed and dressed, but advocates about his right to be a participating member of society.
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He has changed the lives of several young people I know who have gone into the work. He has opened doors for countless other people whose parents were not quite as vocal. The young people he lives with in his house at present were living in subhuman conditions in institutions. They were there because guardians said that this was the best place for them. They were fed, they were dressed, and they were looked after. They now live in the community, in a house that costs no more money. They contribute: some of our people who are non-verbal, who lived in locked conditions in institutions, are now helping to deliver meals for senior citizens, all because people advocated on their behalf.
If this legislation goes through in its present form, people like John will not be allowed to have an advocate -- they will have a guardian. People who do not have parents who are quite as aggressive as John's mother will be left with no one to fend for them, no one who will speak for them beyond their care and in a very peripheral manner. The kinds of doctors who decided when John developed an acoustic neuroma, who thought about his quality of life and decided that really he should not have surgery, will be listened to, because a guardian does not realize that a person should have the rights of every other person.
John, because we got to another doctor, who looked at him as a person with rights -- we in Canada are great on human rights for people coming into our country, but sometimes the people who have been here from the beginning are the ones who are most overlooked. The most vulnerable people amongst us have something to give to the community, and the community gives back to them. It is a wonderful opportunity for people to live and grow in their own homes, but this does not happen if they are only allowed to appoint an advocate and have a guardian who is appointed for them.
I urge you to rethink this legislation. Guardianship is not suitable for anyone, in my humble opinion. Advocacy is the only way to go. There are many thousands of young people out there who require the services of an advocate to speak on their behalf. Parents in many cases are too overwhelmed by the work and worry. An advocate can speak and make some wonderful things happen for this person. I urge you to rethink this legislation so that an advocate becomes a right to every person, not guardianship.
Ms Hastings: Thank you, Cay.
Now I would like to turn to the Substitute Decisions Act. The task force believes that the establishment of a tribunal or board is the preferable venue to appoint a guardian rather than through the courts, if a guardian is to be appointed at all.
As we all know, the courts are backlogged. They are time-consuming and they are costly. We believe that it may intimidate persons who are trying to act in the best interests of vulnerable persons to go through a court system. A board member or board members will have the experience and sensitivity necessary to deal with the matters of guardianship, as opposed to judges who see a wide variety of cases every day and do not have the opportunities to develop an expertise in the area of guardianship.
The task force also believes that the act should contain provisions which recommend that wherever possible the guardian be a family member, spouse, partner or friend. Obviously, the office of the public guardian and trustee should only be appointed as a last resort. We believe this issue is of sufficient importance that it merits a section clearly delineating those persons who make preferable guardians.
Finally, our greatest concern is that which surrounds the provisions of personal care. The task force supports the provisions that govern the power of attorney for personal care. However, again, we have great concerns with respect to the appointment of a guardian for personal care. As presently drafted, the act requires that there be a finding of "incapacity" before a guardian will be appointed.
It has long been our position that the need for supported decision-making does not need to be contingent on a finding of incapacity. Such a finding denies persons their rights and communicates to the public that those persons do not have the right to make their own decisions. These perceptions only serve to maintain the barriers to one of the primary goals of organizations like MTACL, which is community integration. We suggest that a finding of a "need for supported decision-making," not a finding of incapacity be the criterion for appointing a guardian.
We would like to thank you for your time in listening to our submissions. If you have any questions at this point, we would be happy to answer them for you.
Mr Poirier: I am trying to decipher where you are coming from or where you want to go to. Being a devil's advocate, are there some situations where people need a guardian as opposed to an advocate, or both, or what? Can you make such a distinction? Is that possible?
Mr Baldwin: Our feeling on that would be that certainly the Advocacy Act would have some impact on need for guardianship. If good supportive advocacy was available and the appropriate supports within the community were available I think there would be far fewer individuals in need of guardianship. To determine to what extent people need guardianship without those other pieces in place would be counterproductive, I think. You are addressing the wrong issue.
Mr Poirier: You are trying to minimize the number of people under guardianship?
Mr Baldwin: Exactly.
Mr Poirier: Okay, but you are saying there are probably some circumstances where you need guardianship. Is that correct?
Mr Baldwin: In addition, what we are saying is that a guardianship is ideally vested within relationships that the individual has. It should be first and foremost the responsibility of an advocate to facilitate the kind of relationships that then can be considered in the context of need for guardianship.
Mr Poirier: Does that make your definition of advocate different than the one here?
Mr Baldwin: Not necessarily, no. I think what we are talking about is the definition of access. But within the context of the bill, certainly to create that kind of support within the community would be within the mandate of the advocate.
Mr Poirier: Do you think the current definition of advocate as proposed in Bill 74 would be enough for you to take that definition and use these advocates as proposed and to minimize the number of guardianship statuses across the province? Do I hear you correctly?
Mr Baldwin: Yes.
Ms Hastings: So long as the provision with respect to non-instructed advocacy is addressed.
Mr Poirier: Do you want to elaborate on that?
Ms Hastings: As we understand it today, it may be that a person who cannot clearly say, "Yes, I would like an advocate," may not receive an advocate. We believe that a large proportion of the clients whom we represent will therefore not receive the advocate and instead may be appointed a guardian, which is exactly what we are trying to avoid. Guardianship should be a last resort.
Mr Poirier: What would you do with somebody with an advanced case of Alzheimer's?
Mr Baldwin: We are not here to speak on behalf of the needs of other groups.
Mr Poirier: Okay, an Alzheimer's case would not fit into your criteria of what you do, only people who can find a place in community living, and I understand that somebody with advanced Alzheimer's would not be able to do that.
Mr Baldwin: Certainly, persons with developmental handicaps also have Alzheimer's. But if you are asking if we can speak on behalf of organizations that represent those needs, no. What we are presenting are primarily the needs of the members of our association. They are our family members who have children with developmental handicaps.
Mr Poirier: You are coming from a very specific area.
Mr Baldwin: Yes.
Mr Poirier: What you are advocating -- pardon the expression -- is obviously for a very specific group, where it may not apply to other people with difficulty living in the community.
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Mr Baldwin: A difference would be perhaps that someone with Alzheimer's may have access to power of attorney. We are talking about people who at no point in their lives would be able to sit down and document what their expressed wishes or desires are. Yes, this group constitutes a separate set of needs that have to be included.
Mr Poirier: Thank you for helping me make the distinction.
Mr Winninger: I certainly appreciated your presentation, but I do have a little difficulty with your position on guardianship. Perhaps I could ask a question or two to help me clarify it.
You described guardianship as the last resort. Some people have described it as a necessary evil. At the bottom we have, say, advocacy, which may in fact be the least restrictive alternative. Perhaps at the upper end we have guardianship. If it is indeed the most intrusive form of intervention, is it not important that if we are going to have guardianship -- and you do seem to acknowledge the need in some cases for guardianship -- that there be a finding of incapacity, because otherwise guardianship could be foisted on people who are perfectly capable?
They may be needy individuals, they may be vulnerable individuals, they may be individuals who benefit a lot from the community support you advocate. And yet they may have capacity. My problem is, I do not see a finding of incapacity as having that stigma attached to it that you seem to. If someone is found to be deaf or someone is found to be disabled, there is no stigma attached to that. It is the way society may discriminate against that class.
However, the same must apply to mental or physical incapacity. It is not an opprobrious term in itself, but it is a means to an end. By making that finding of incapacity, are you not setting up, structuring the basis for the kind of intervention that may be required? For example, in the case of someone who is institutionalized without any family network, how do you make decisions on behalf of that person? How are you accountable in the long run?
Mr Baldwin: On the one hand we fully acknowledge that there has to be protection of people's rights within the context of an assignment of a guardian. However, particular to persons with developmental handicaps there has been a struggle over the past 30 years to overcome the stigma that has been attached to that label. The stigma has had very powerful effects on people's lives in terms of denial of the privileges of community living.
From our viewpoint, to establish the need for support in making decisions primarily around personal care -- that is what we are talking about -- is support in some instances more than others, across individuals and across situations, to provide that as a support which we see as very valuable -- we do not deny that support is needed -- but not to base it on a clinical or legal application and finding of incapacity. When we look at that and we say, "What is the value added?" we recognize that one of the values is the protection of rights. But when we look at the downside of what that does, particularly from the family's and the individual's perspective, it creates once again a very stigmatizing label that we have experienced significantly in its impact on the community. It is telling people that individuals are incapable.
We have been struggling for 30 years to tell people that individuals are capable, are members, are participants. We acknowledge the struggle that you have legally in trying to reconcile these positions. What we are putting to you is, surely there must be some vehicle, some way in which the protection of rights can be included, as well as the protection against the stigma of a label.
Mr Winninger: I take it that the concept of partial incapacity does not affect that balance for you. Someone can be incapable for one purpose yet capable for another --
Mr Baldwin: Exactly.
Mr Winninger: -- and by respecting that partial capacity you are achieving the least intrusive alternative? Is that not satisfactory?
Mr Baldwin: My understanding is that in both instances there is still the requirement for the proof of incapacity. That is what we are taking issue with. There must be another way of establishing and validating a person's need for support in decision-making. We are talking about someone who needs help in looking at situations and making decisions. From our perspective, to have that be a process of determining whether or not they are competent is not the route we want to see developed in something as comprehensive as this legislation.
Mr Winninger: If you find a better alternative, let me know.
Mr Baldwin: I would ask that you seek a better alternative, because what we are saying is that the impact on the lives of the people we represent truly would be significant.
The Vice-Chair: I would like to thank you for appearing before us today. I know you have taken time out of your busy schedule. Thank you very much.
COUNCIL FOR LONDON SENIORS
The Vice-Chair: The next group we have presenting is the Council for London Seniors. Good afternoon; I would like to welcome you here. Before you start, if you could please give us your name for the record and then begin, please.
Mrs Nickle: My name is Norma Nickle. I feel very lonely up here as a group. Members of the committee, I would like to thank you for hearing today from a fledgling seniors' organization. I realize "fledgling" and "senior" are not usually two words you put together.
I would first like to introduce our council to you. The Council for London Seniors was established in 1989 under the joint auspices of the Ministry of Community and Social Services, the city of London, the Thames Valley District Health Council and the United Way of Greater London. Since the first meeting of interested persons in May 1989, the council has been developing with a view towards providing a forum which would bring together individuals and groups in the city who are concerned with all matters relating to seniors. I hesitate to tell you, but we consider a senior to be anyone over the age of 55.
Our current active membership includes seniors, providers of service to seniors, and community members who have an interest in the wellbeing of seniors. The current draft of the council's bylaws states that its mission is to enhance the quality of life of seniors in London in order that all shall have the opportunity to achieve their full potential. The council will provide seniors with a sense of identity and opportunities for participation in programs that focus on advocacy, communication, coordination, education and planning.
Eleven senior members of the council and two service providers, along with a local lawyer, studied Bills 74, 108 and 109, along with Mr Sterling's Bills 7 and 8. We looked at the bills from a senior perspective and we hope our comments will be received in that context.
First, I would like to state that we found the legislation very difficult to read, study and understand. Our seniors come from many cultural and educational backgrounds: law, medicine, and education. We studied and struggled with these convoluted bills to the point that we concluded that their intent was not very clear to us. The three bills are so intertwined and impact on seniors in so many ways that it would seem to this senior group that we need a bill written just for seniors. A clearer example would be the Older Americans Act, easily understood, outlining specific responsibilities. We doubt that broad-brush legislation is going to serve seniors effectively.
Seniors have spent a lifetime making their own decisions and they want to know that when they become frail they will have some ability to control their final years. We know that by the year 2000 Ontario will have a high number of seniors. We are living healthier lifestyles and we are going to be around longer. We will become frail at a later age and will require more health care and decision-making. The thrust of the new long-term care legislation is to keep us in the community longer, and many of us will be at risk. The care givers, if they are seniors, will have to make a lot of decisions never presented to them before.
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We are told that 20% of seniors over the age of 80 will suffer some form of dementia. That is a statistic that would make all seniors fear that they are going to lose control of their own destiny.
Bill 109: This is the bill that we are most anxious to address. Why not a living will? We do not want to become a burden to our families and we need to know that while we are still healthy and able to understand all the ramifications of our decision we can give our family, friend or doctor a validated paper that expresses our desires. We would like to be reassured that we have made our own decisions and that these decisions are effective now, and not wait until we are no longer capable.
We liked the health-care directive produced by the Hamilton group called Let Me Decide. An 84-year-old member of our committee indicated that she does not want CPR if her heart fails. She listened to the statistics of the success rate of CPR on frail seniors -- less than 1% benefit. She would like the ability to say no.
We do not want our families arguing about what is in mother's best interests. We want to make that decision while we can. It is important to us that a validated, in-force document is in place.
We have experienced long delays in assessment and assistance in the past. Bureaucracy has been cumbersome and will continue to exist, as is evident in the content of these bills. Most frail seniors do not have enough time to wait for the wheels to move. A consent and capacity board has got to be just another hurdle. In many cases the senior does not have time for the process to work. A great concern is the ability for this board to override the seniors' instructions.
The education of health-care providers on all levels is critical to any new law or, even as stated in this act, just the codification of the present laws. Historically the professional has had control in the area of health care. Will this Act respecting Consent to Treatment and the seniors' wishes be respected? We again are somewhat cynical about professionals changing. Many problems with the Mental Health Act are directed to professional non-compliance.
A living-will type of directive would allow all seniors to specify what life-sustaining treatments a senior desires.
Seniors need their own legislation. Easy to understand, not intimidating, respecting the dignity of their long life of decision-making, giving them control over their destiny. As stated in our brief, seniors fear dying poorly versus dying actively. Let us decide and know what we decided.
Bill 108: Seniors living longer and becoming confused and feeling less secure -- both conditions a definite with the aging process -- will need help managing property and assistance with their personal care. Seniors with a family network and holding an estate or property need to know that their wishes will be followed, and that their guardian has all the necessary legislative powers to carry out the senior's wishes.
The ability to draw up a validated personal-care document and a document for management of property while still able to designate that power of attorney with an effective date and stating the circumstances for exercising the rights of the document ahead of any incapacity or emergency would reassure the senior that his or her wishes will be followed. Why wait to validate?
We question who will have the authority to validate the documents to make them legal. Will they require legal advice, and if so, what will be the cost to seniors and their estates? This will have to be outlined very clearly and simply, or seniors will back away from helping themselves.
Again, education of public and professional is necessary to make any legislation work. The information has to filter down through the system to everyone.
The seniors in our group had some serious concerns about the "classes of persons" who will be the assessors. Will they be trained and in place for the enactment of this legislation? Will seniors be asked to help in this education process? A senior understands the fears and concerns of a senior experiencing third-party interference.
In Bill 74 this new bureaucracy leaped out of the legislation at our study group. We have to assume there will be some new boards and commissions and staff, but we would like to see it minimized. Surely we have agencies in place that can handle some of this work.
The Advocacy Commission, with the membership makeup outlined in the act, will not represent seniors appropriately. We all agree that seniors will be the major users of the advocacy service and should therefore be the majority of members on the commission. The method of nominating the commission members leaves out a host of organizations representing seniors and consumers. To give the commission credibility, this has to be reviewed.
The role of the advocate is not well defined and could involve any kind of activity. The responsibilities are not clear; to whom are they accountable? What are the qualifications of advocates, and will they be trained to understand seniors? All service providers have required qualifications and they are liable for their actions while in the commission of their duties. Will advocates be liable? Seniors are vulnerable. Are these advocates decision-makers or are they advisers? They must not be seen as meddling. The senior will be threatened by interference.
We realize that many definitions are defined following legislation, but in this case we feel that major definitions should be defined in the body of the legislation and the elected members made accountable to their constituents.
Finally, our group of seniors feels that there is a great emphasis on the rights of the individual without an equal emphasis on the individual's obligation to care for and be responsible for himself/herself. All three new pieces of legislation do not make it any easier for most seniors to make decisions and care for themselves. If you allow us to help ourselves while we are capable and to help our families, friends, physicians to assist us when we are no longer capable, then we will not be a burden to anyone, and not being a burden is important to us. Let us decide. There is a need and a wish among younger seniors to be able to plan ahead and make it easier for themselves and their families.
Public, senior and professional education about these bills is critical. A change of attitude by the senior, the professional and the community will have to take place to make this legislation work.
Will this legislation prevail over federal legislation? Will this legislation work with similar legislation in other parts of Canada? A senior will often move to be closer to his or her family. Will they have to start all over to make decisions about their care and property if they move? Will the implementation of this legislation be properly funded?
Now for some concerns and recommendations.
Senior-specific legislation: We are concerned that the views of seniors must be heard during the deliberations of this government and before the enactment of this legislation, so that laws will best serve the growing senior population. We feel very strongly that separate legislation should be enacted to address the senior population directly.
Seniors have very little in common with the young developmentally handicapped. Seniors have established family networks and estates and have spent a lifetime making their own decisions. One senior bill could address consent to treatment, power of attorney for personal care, power of attorney for property, and advocacy for those over the age of 65. We need laws to allow the right of determination.
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We support the concept that a person should have the right in law to make provision for medical decisions in the event that he or she should become incapacitated. These living wills or durable power of attorney for health documents should have an effective date determined when they are signed. Provision should be made for updating periodically.
Educate the service provider/health care professional: The entire system, including seniors, will have to be educated and informed so that the seniors are able to deal with their own decisions in a dignified and practical manner. The majority of seniors wish to participate, and are capable of participating, in a meaningful and constructive lifestyle. They can offer a great deal to their families and to their community families. A change of attitude by the professional and the community will have to take place. We need to see extensive education as part of any legislation dealing with seniors.
Clear and precise legislation: Bills 74, 108 and 109 and their intent are not at all clear and will not encourage seniors or family members to take responsibility for themselves or for their loved ones. The system would certainly be enhanced if the majority of the 55-and-over population enacted a living will and a power of attorney for property and personal care so that in the year 2000 this large part of our population would be accepting responsibility for itself.
Advocacy Bill 74: It is our strong wish that Bill 74 be revisited. The legislation must clearly define who the advocates are, what their qualifications are, to whom the advocates are accountable and when a senior will benefit from the service of an advocate.
The Vice-Chair: Thank you very much for that most thoughtful presentation.
Mr Chiarelli: I want to thank you very much as well for your thoughtful presentation. I think you make a very good case for your group.
I am concerned about specifics and specific implementation of the advocacy legislation. I think the legislation is very high and very good in good intentions and very low in specifics. When it comes down to specific situations, if this legislation were to be passed I think there would be a lot of gaps and a lot of uncertainties, and you pointed out some of those.
I am going to ask you one question that I asked someone previously as well. When this legislation was introduced, in briefing notes and in promoting this legislation, the government, and the minister in particular, Ms Ziemba, used the words: "In its simplest form, advocacy provides a voice for those who may have difficulty in expressing themselves because of a disability, whatever its nature, and who do not have the support of family and friends to assist them in doing so."
It makes it sound like if there is family support there, then the advocacy legislation will tie in, but in fact there is nothing to that effect in the legislation itself. The legislation talks about the advocates' and the advocacy's responsibilities, duties etc, and does not refer to any priority or preference given to family support as opposed to that of advocates.
My question to you is, in your reading of the legislation and your understanding of what happens to someone called the consumer, can you see circumstances arising where the advice and the course of action that an advocate would want to take would be in direct conflict with what a family member might want to do?
Mrs Nickle: I think that was one of the things we were concerned about when we studied the bill. A lot of seniors do not have family nearby, and we were looking at an advocate being called in an emergency situation. That was why we strongly recommend that while seniors were able to make some decisions for themselves, they would have some kind of document with themselves, with their family, their friend, their physician, whomever, so there would never be an opportunity to have to have an advocate make a decision that would not be the senior's choice.
Mr Chiarelli: But let's assume you have a situation where there is a senior in some sort of vulnerable position. You have a close family member recommending one course of action and you have an advocate recommending another course of action, and they are totally at cross-purposes in what they want to do. Can you see that situation arising?
Mrs Nickle: Certainly.
Mr Chiarelli: Can you see anything in the legislation which assists that or addresses that confrontation that may occur, granted, in a minority of situations, but certainly situations will arise like that?
Mrs Nickle: We see nothing in the legislation that would give a definite line of direction for an advocate, a senior or a family member to take. There does not seem to be any recourse. We were very concerned about the fact that if it had to go beyond that, there is not time in a senior's life to have to go to another board of appeal.
Mr Chiarelli: Do you think the government would be well-advised to withdraw this legislation, which is live legislation -- it has been through second reading and it is in committee stage now -- and reintroduce it as a draft bill with a lot more time and a lot more consideration by groups such as yourselves?
Mrs Nickle: Yes, we would definitely feel that way. We feel the bill as it stands needs to be revisited, definitely.
The Vice-Chair: We seem to have a clarification from the parliamentary assistant involved with the ministry.
Mr Malkowski: I would just like to clarify that the advocate does not make decisions. I want to make that very clear. You need to read through Bill 74 very carefully under clause 7(1)(h). An important point there to clarify is that we do not make the decision. The advocate does not make the decision without the family. They are there to get the support of the person and they would not be interfering with the person's wish, so I think we need to clarify that.
The Vice-Chair: Thank you very much for that clarification.
Mr Sterling: I think anybody who has had practical experience in trying to take instructions from elderly people, from vulnerable people, knows that while he might not think he is making a decision for the vulnerable people, many times the advocate does in fact make the decisions, regardless of what legislation might say or whatever. That is a very deep concern, I am sure, of your group.
I was touched by your brief because it represents in a lot of ways my concerns over the legislation. One of the reasons why I wanted the committee to keep Bills 7 and 8 in front of the committee was that if there was a strong enough feeling by the committee that it should sever out those parts of the legislation dealing specifically with durable powers of attorney and living wills, that option still would be there for us. I take it from your brief you would prefer to see living wills and durable powers of attorney severed away from Bills 108, 109 and 74. Is that correct?
Mrs Nickle: Absolutely. We did a literature search through 44 states, and then this bill that is specifically for seniors in the United States. It is not perfect but, yes, there are some things that are very definitely seniors' concerns and they cannot be part of this; they need to be separate.
Mr Sterling: I think you correctly identified the problem of including them in this legislation. It was identified by another witness before the committee yesterday, actually the Canadian Bar Association, saying that Bills 108 and 109 try to address too many situations within the same pieces of legislation in trying to deal with people who are entering psychiatric institutions and people who are trying to deal with a fairly simple family situation.
Yesterday, I also asked the ministries whether or not I as an individual or a citizen of Ontario could exclude an advocate from the process. You mentioned very strongly your desire and the desire of your group to maintain control of your lives until you die. I consider the advocate an intrusion into my life and into the lives of the people of Ontario. Would your group think you should be able to exclude an advocate from entering into the decision as to what should be done for you or what should not be done for you in the future?
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Mrs Nickle: Yes, we have said a couple of times that we thought an advocate would be meddlesome, would be interfering and would be suspect by a senior. We feel very strongly that a senior, when he or she becomes frail, will be confused easily, and though an advocate is there to advise and not make decisions, that would be a very fine point.
The Vice-Chair: We have a clarification again from the PA.
Mr Malkowski: Again, I just want to make it clear that the advocates will not be interfering with the vulnerable person's decisions. They are not going to be interfering in the decision-making process. I want to clarify that. If the person does not want the advocate involved, then the advocate would respect his wishes.
The Vice-Chair: That is just a point of clarification. It is not an interjection. Mr Winninger, please.
Mr Winninger: I too would like to thank you personally for journeying from London today and sharing your views with us.
Mr Chiarelli: As a matter of fact, it is a point of clarification, but it is also an opinion, and I think it is important that if the PA can express opinions, then other members of the committee should be able to respond to his opinions.
Mr Winninger: I thought I had the floor, Mr Chiarelli.
The Vice-Chair: Excuse me. Mr Winninger has the floor.
Mr Winninger: I know your organization is a relatively young one, but I know you have brought together a number of seasoned professionals who have had long years of community service. I was quite pleased to note from your annual report that my former family doctor and the legal aid area director both make contributions in the work of your advocacy organization.
You asked, why not a living will? I know you have probably read through these acts carefully, but I would ask you to revisit section 13 and section 28 of Bill 109, because section 13 sets out that the wishes expressed in a power of attorney for personal care actually override the appointment of a guardian under the Substitute Decisions Act. So if a person decides he or she wants to authorize a particular form of treatment or authorize a withdrawal of a particular kind of treatment, the instructions are quite clear and the legislation is quite clear that this cannot be overridden.
There may be cases where the instructions are not so clear or there may be cases where the person later on has decided that technology has improved to such an extent that he can make a valid expression of his will that if the technology can save his life, the technology might be used on him. But I would suggest to you that there are very limited circumstances where, under section 28, a board can override the avowed wishes of the person who either seeks a treatment or authorizes the withdrawal of treatment through his substitute.
Mrs Nickle: I guess our concern was that our reading of the consent to treatment said that it did not become validated, that it was not acted upon, until it was needed. What we are saying is that I would like to be able to go to my lawyer and put all of this down on paper and have it validated and certainly updated as things change, just as I would my will.
Mr Winninger: There is nothing to stop your validating it, but under section 13 it does not even have to be validated in order to be followed in a treatment facility. Section 13 is very clear: Even if the attorney dies or becomes incapable or resigns, the earlier wish has to be complied with; the advance directive must be obeyed.
Mrs Nickle: We would be happy to read it again. As I said in the beginning, we had difficulty; we struggled with it.
Mr Winninger: Sections 13 and 28 are key to that understanding.
Mrs Nickle: Okay.
The Vice-Chair: Thank you very much for your fine presentation. I am glad you took the time out to come here today.
NORTH YORK PUBLIC HEALTH DEPARTMENT
The Chair: The next group up is the North York Public Health Department. Good afternoon. Could you please identify yourself for the record and then proceed.
Dr McCausland: Yes, I am Dr Joan McCausland. I am the deputy medical officer of health in the city of North York, and my colleague, Ms Diane Johnston, is assistant director of public health nursing. We appreciate the opportunity to come and address the committee to speak to the brief we have already submitted.
First of all, we would like to say that public health in general supports the intent of this legislation. It is important legislation and we wish you well in your endeavours.
We would, however, like to call attention to some of our concerns, and the first of those is the definition of "treatment" in Bill 109, which "means anything that is done for a therapeutic, preventive, palliative, diagnostic, cosmetic or other health-related purpose..." It is a very broad definition, and we feel it covers the kinds of screening programs that are required by Ontario regulation 274/91 under the Health Protection and Promotion Act, which requires public health departments to carry out vision and hearing screening in children entering school in Ontario for the first time. These are non-invasive tests. The vision test is very straightforward. It involves reading letters on a card. The audio test is also non-invasive, involving wearing headphones. The dental screening program is also a requirement of the legislation and involves asking a child to open the mouth for a visual inspection.
At the present time public health departments are carrying out these screening programs at low cost. We feel that if screening programs are included in "treatment," then we will have to make a fundamental change in our procedures in obtaining written consents from parents. This is a very time-consuming process. Many letters go home to parents from the schools and many are not returned as consents. What is superficially a simple, acceptable, low-cost program to identify children with disabilities will become less efficient, because we feel the children whose parents are less likely to return the consents signed are the children who are probably in greatest need of the screening test. At the present time we are advising parents that the tests are to be carried out and that if they do not wish their child to participate, that is fine; there is no penalty and no discrimination for non-participation.
Our second concern is regarding the determination of capacity to give consents. Public health departments run birth control clinics where there is some treatment of sexually transmitted diseases. Also, most of the people who come to those clinics are indeed over the age of 16, but there is a small number of them who are 14- and 15-year-olds. These young people, male and female, are already sexually active, in the vast majority of cases, before they ever show up at the clinic. Under common law they can give consent for treatment and we think it is important that this be allowed to continue. The common law serves us well at the present time.
However, we do see a need for criteria to determine capacity to give consent. With the new legislation there will be 22 regulated health professions and it is really important that we do have criteria as to capacity to give consent. At the present time it appears that health care workers who are not regulated can do almost anything, whereas the regulated people are really tied there.
Failure of these 14- and 15-year-olds to obtain proper treatment could have serious health effects for them in the long run, such as sterility or serious medical problems that can result from failure of a sexually transmitted disease to be treated, and again, failure to obtain adequate counselling about pregnancy could lead to illegal abortions.
I would add that when these young people do come to one of our clinics, it is part of our procedures to counsel them that they should be talking to their parents, that they are not to bypass this in any way at all, and if they need assistance in talking to their parents, then our staff are certainly very willing to provide that assistance.
Those are our concerns and we would be pleased to answer any questions you have.
The Chair: Thank you very much.
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Mr Poirier: I looked at your recommendations as you have worded them pertaining to the age of 14 and 15. It becomes a very interesting topic, because you are obviously not the first group and I am sure you are not the last group to talk about age in all this thing. When you read articles that some people sometimes as young as 12 are out on the street and actively engaged, what is with 14 and 15 -- maybe the vast majority of your clients may be 14 and 15, or below.
Dr McCausland: No.
Mr Poirier: The vast majority of those who are 16 or 14 and 15; how is that? I think that is more like it, yes. Other medical officers who have come forward have asked that there be removal of reference to age and let the medical practitioner decide if he or she feels that the person in front of him or her, no matter what age, can make the decision to give consent. Would you feel even more comfortable with that or what?
Dr McCausland: I think that should certainly be considered. We have very few clients who are 13 and under, and they are usually cases where children's aid has to be involved.
Mr Poirier: No doubt, but even if there are only a couple of them, the thought that there are some children of that age who could not seek or need medical attention, and they may hesitate or the medical practitioner may hesitate because that person cannot -- because of some wording in the law somewhere, it can handicap the process of giving health services to someone in need because of age restriction. Would you be even more comfortable if there was complete removal of reference to age?
Dr Causland: Yes.
Mr Poirier: Okay. I am trying to see a consensus there to give our good friend the parliamentary assistant to go back with some recommendations to the minister that he has heard this, even though the opposition has added this, because we are trying to make a consensus as to the different recommendations pertaining to age.
Ms Johnston: I think that, as was mentioned, the 14- and 15-year-olds are the ones we would see most. However, as you have suggested, there certainly are some 13-year-olds. In terms of the consensus you are referring to, the preference would be for no age restriction and look at the common law and the age of consent.
Mr Poirier: In 24 words or less, how would you say young people feel about coming up by themselves, without parental knowledge, to get medical aid? Would you feel the majority, or part of a minority of the kids that age, feel comfortable as they do it? What percentage of the kids you think need medical attention do go up freely?
Dr McCausland: The young people who come to public health clinics feel much more comfortable coming to a clinic rather than going to the family doctor or anyone their parent knows.
Mr Poirier: And what percentage of the young people who you think need medical attention would show up? Is there still shyness involved, hesitation?
Dr McCausland: Yes.
Mr Poirier: Very much so still today?
Dr McCausland: Yes.
Mr Poirier: Okay. That is why I would like also to see the complete removal of age. If we cannot trust the medical officer to decide whether the person in front of him or her is able to give consent, who the hell can we trust, right?
Dr McCausland: Right.
Mr Poirier: Good, thank you. Sorry for putting words in your mouth, but I thought that.
Mr Sterling: Thank you very much for coming, because the issue you raised was brought forward this morning as well. What I would like to ask the parliamentary assistant is, if you are under 16 under Bill 109, it is assumed that they are not competent and then that presumption can be rebutted. If it is found that they are not competent, then an advocate is brought in. That is correct, is it not?
Mr Wessenger: Yes, it is correct that if a child is found not to be competent, then an advocate, under the way the bill is presently worded, would be brought in.
Mr Sterling: What happens when you treat very young children? Is an advocate involved in all those cases?
Mr Wessenger: Perhaps I would refer that to our counsel. I think perhaps it is an area that needs some clarification in the future with respect to the bill, the whole question of the age aspect. I think I will ask counsel just to comment on that.
Ms Bentivegna: Generally, the way it is drafted now, if a young person under 16 is presumed mentally incapable, if he or she expresses a wish to make the treatment decision, then the practitioner has to determine whether he or she is incapable to make that treatment decision. If they are found incapable, then there is an advocate and they have a right to go to the review board.
Mr Sterling: There was a question in the Legislature of the Minister of Citizenship by a New Democratic Party member about the immunization thing where a child, say, of seven or eight, said, "I don't want to take the needle." You would tell me then that, notwithstanding the parents saying, "He or she is to have it," an advocate would be called in.
Ms Bentivegna: There is right now in the language the ambiguity that that could be taken as an expression of wanting to make the treatment decision. All they are basically expressing is a fear, but people have said that could be taken that far, that language of expressing a wish to make the treatment decision. So that is a possible interpretation, that then that child would be found incapable of making the immunization decision and then you would need the advocate, but the intent is that you would look to someone who was capable of making such a decision, demonstrating that wish that, "I want to make the decision to be immunized or not." The question is, is that child, at his young age, really saying that or is he just expressing a fear? The committee may decide that it wants to clarify that language or put a bottom age as to when you can express a wish to make a treatment decision.
Mr Sterling: I think you are trying to confuse the situation.
Mr Wessenger: With respect, I do not think she is trying to confuse; it is perhaps a difficult issue here.
Mr Sterling: I think it is incumbent on you to clarify the situation. Obviously your minister did not understand the question or gave the wrong answer in the Legislature, because she denied that this was the case.
Mr Wessenger: No, to be fair, if you look at a young child, I think the question is that you normally interpret a young child refusing to take a needle as not at all expressing desire to make a decision. You would say that child would be incapable of expressing even the capability of making a decision on the treatment or not. A very young child would not have that capacity, and therefore the health practitioner would ignore that expression of the four-year-old refusing to take the needle.
Mr Sterling: I cannot think of any more direct indication of not consenting than saying no. I do not care whether the child is four or six or 12; if you want to extend it to 12, or whatever, the doctor says, "I'm going to give you a needle," and you were recognizing the person as a vulnerable person, and he says no, that is a decision that the individual, if you are respecting that individual when he is four or he is 40, is saying no. In my view, I do not know how you can argue that.
Mr Wessenger: I think that at this stage we are not dealing with the actual language of the act.
Mr Sterling: Then put some language in front of us; please.
Mr Wessenger: This is what we are listening for, to get input with respect to this matter. I think I have already raised with the previous question the question of a minimum age.
Mr Chiarelli: The damn legislation has been through second reading. What in hell are you talking about?
Mr Sterling: I think there is a great problem for members of the committee and members of the public to deal with this act with the genuine kind of input and debate that is needed. If in fact you recognize there is a problem, and I think you have, then I think you should forward an alternative suggestion so people can then say: "That one is ridiculous. We'll go to the next suggestion and let's talk about it."
The Chair: In fairness to our presenters, I think we could discuss this --
Mr Sterling: I am sorry, but you helped raise the issue.
Mr Chiarelli: I think it is very relevant to this committee. What I would like --
The Chair: Mr Chiarelli has a question along this same line before we proceed over to Mr Wessenger.
Mr Chiarelli: I have another question for legal counsel, if I may. I do not think we can look at this legislation in a vacuum. What I want to ask you is, if I were a health practitioner and I am in a clinic or some sort of medical setting and I have a 14-year-old in front of me and that 14-year-old says, "I want treatment X," should I call the parent? Should I call an advocate? Should I call both? What should I do?
Ms Bentivegna: The first thing to do is that the practitioner ascertains if the person before him is capable with respect to making that treatment decision. If they are capable --
Mr Chiarelli: But she is not sure.
Ms Bentivegna: Right. But they would --
Mr Chiarelli: If there was uncertainty there.
Ms Bentivegna: Right, but they make the final decision. They speak to the young person, they explain -- he or she, the practitioner, makes that decision, "I'm dealing with a capable young person or I'm dealing with an incapable young person."
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Mr Chiarelli: The other option is, "I can't decide; I don't know." What happens in that case?
Ms Bentivegna: They would have to make a decision either way. If they do not know, I guess they would err on the side that they are dealing with an incapable person, because they cannot take a consent from a person who is incapable.
Mr Chiarelli: And then what happens?
Ms Bentivegna: If they are dealing with an incapable person, then they should call in the advocate and notify that young person of his or her rights.
Mr Chiarelli: The legal obligation is to call an advocate?
Ms Bentivegna: Yes.
Mr Chiarelli: Is there a legal obligation to call the parent?
Ms Bentivegna: No.
Mr Wessenger: Just with respect to the screening aspect, when you send out the information to parents with respect to the procedures, do you send out full and complete information as to what procedures their children will be subject to in the screening, what test they will be subject to?
Dr McCausland: Yes. We send a description of the test. There is a list of possible danger signs for parents to look for, signs that a child may have some vision or hearing problems, and a brief description of the test, which is a non-invasive test.
Mr Wessenger: Right. What I am referring to, of course, is subsection 5(2) of the Consent to Treatment Act, which states:
"A consent is informed if the person, before giving it, received all the information about the treatment, alternative courses of action and the material effects, risks and side effects in each case that a reasonable person in the same circumstances would require in order to make a decision."
Would you say the information you send out would meet that category?
Dr McCausland: More or less.
Mr Wessenger: I would hope more. We may need some clarification of the legislation in this regard, but it is clear in the legislation that consent to treatment may be implied. I would suggest in this particular instance that if adequate information is sent out to the parents and they do not object, then you could imply that consent has been given by the parent with respect to the child and then proceed with the screening. I am just suggesting that it would not affect your screening tests. As long as you follow your present procedure, you could still proceed with your screening tests.
Dr McCausland: Yes, but if screening is defined as treatment, then getting a signed consent back becomes the issue.
Mr Wessenger: No, the point I am trying to make is that you do not require a signed consent. Consent may be implied under the legislation. Consent does not have to be written consent. It may be oral consent or it may be implied consent.
Dr McCausland: If that is the case, then that would be fine.
Mr Wessenger: Yes, it is the case that it may be implied. I appreciate your raising the point, but I think it should be looked at by our counsel to make certain that that type of situation is covered.
Dr McCausland: Yes.
Mr Wessenger: Thank you. I might ask you another question with respect to the age aspect. I notice you are suggesting rebutting the presumption in a 14- or 15-year-old. I just like your comment first of all with respect to going back to the common-law position and not having a presumption, or alternatively having a lower age. I just wonder if you have any comments on either of those.
Dr McCausland: The ages of 14 and 15 were chosen simply because that is the age of the people who come to the clinics we run. We were really looking at the implications for our own department only in regard to this legislation.
Mr Wessenger: You were not looking towards the broader context?
Dr McCausland: No, we were not.
Ms Johnston: But the answer in terms of broader is that yes, it would be preferable to have no defined age because we certainly see younger clients, but they are in the minority by far. It is the 14- and 15-year-olds we would see primarily in our clinic setting. However, from experience I know that the younger ones certainly come.
I have a question in terms of prescribed criteria. That was one of the recommendations we had made here and I am confused now, in the discussion about criteria, as to whether they in fact do exist.
Mr Wessenger: I think I would probably have to ask counsel to indicate the whole question of what stage of development we are at, because I assume that would be dealt with under regulations.
Ms Bentivegna: There is a provision in the act to allow for criterion standards and procedures for health practitioners to follow in assessing capacity. Right now there is very preliminary work being done.
Mr Chiarelli: I just have one comment on the legal opinion. If I understand it correctly, and I think I do, if there is an uncertainty on the part of the health practitioners they would have to resolve in favour of a decision that the person is incapable, and then there is an obligation to involve an advocate but there is no obligation to involve a parent.
As the parent of a 14-year-old, if I found out after the fact that my child was at a medical practitioner's or a clinic and was deemed to be incapable or perhaps incapable and the obligation on the part of that individual was to get an advocate who is a stranger involved -- with no obligation to get the parent involved, I think it is an atrocious piece of legislation. I think it is a gap that indicates that the legislation is ill-thought-out. It goes totally against the fundamental values we have in our society and I think it should be rectified. But when we see people coming in here with brief after brief, there are such a number of gaps that I think the government really has to seriously consider what it is going to do with this legislation.
The Chair: Thank you, Mr Chiarelli. Ms Johnston and Dr McCausland, I thank you on behalf of the committee for taking the time out and presenting your brief today.
Mr Sterling: On the consent issue of the counsel, just so I can understand it better, with regard to a child who is incapable and a physician who wants to undertake some kind of treatment, who makes the decision for treatment?
Ms Bentivegna: Let's say the child does not want to go and challenge the finding and says: "Fine, I'm incompetent. I still would like the service." Then the parent has to be called in, and it is explained to the child that the parent is going to be making the decision on his or her behalf, and if it is not a parent, whoever has the legal authority to make treatment decisions for him or her. Let's say it was a child under the children's aid society and the CAS had been given that.
Mr Sterling: But the parent then is given the power over making the decision for the incompetent?
Ms Bentivegna: Yes.
Mr Sterling: And the advocate does not come in?
Ms Bentivegna: No. The advocate only comes in to give that young person the information that he or she has been found incapable, that the parents will be making the decision and that the young person can challenge the decision before the review board. If he chooses to go the route of challenging, then treatment is delayed unless it is an emergency.
Mr Sterling: Just a minute; go back here. So if the parents decide there is treatment to be made for their own child, the advocate is not involved at all? Are they even notified that this is taking place?
Ms Bentivegna: No, if the child in no way expresses any wish to make the treatment decision -- let's say both parent and child go and they discuss with the practitioner and it is decided what is needed and the child does not express any wish to make any kind of decision -- then --
Mr Sterling: There is no commitment.
Ms Bentivegna: Exactly, then it is made on the substitute decision. That is why it is worded that in order to trigger a capacity to determination of that child, he or she has to express some wish to make the decision. Otherwise, in most cases, if the child does not say in some way, "Look, it's my decision," then it is the parent's decision.
The Chair: Thank you for that clarification.
VICTORIAN ORDER OF NURSES
The Chair: I would like to now call forward the next presenters from the Victorian Order of Nurses. Good afternoon. I understand you will be submitting a brief at a later time.
Ms Murray: Yes, we will, Mr Chairman.
The Chair: All right. For now, would you please identify yourself for the record and then proceed?
Ms Murray: Thank you, Mr Chairman. My name is Gail Murray. I am provincial executive director for VON. We welcome this opportunity to address the committee on the advocacy, substitute decision and consent to medical treatment acts. With me today are Ms Johanne Mousseau, director of clinical practice for VON Canada, and Ms Margaret Aerola, executive director of our Simcoe branch. I thought it might be helpful during the question period for you to be able to address some of your questions not just to me from the provincial perspective but to some of the people who are working directly in the field. Johanne does actual hands-on nursing. It is part of her clinical practice about half a day a week, and Marg in her role as executive director is very close to the community and the actual running of our VON branches.
First of all I would like to give you a bit of background as to why VON chose to make a presentation in terms of the legislation. We serve 90% of Ontario through our 33 branches. We do more than three million visits a year to persons who receive services under the home care program in Ontario. That means we have many thousands of clients or patients whom we see every day throughout this province. We also administer four home care programs on behalf of the government of Ontario.
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In particular, our clients are very much that group you are attempting to address in terms of the legislation, the vulnerable adults, the frail elderly and the disabled, whether that be physically or mentally impaired. In addition, in particular with regard to the substitute decision-making, many of our clients, because they suffer perhaps from chronic illness or are receiving palliative care, are very concerned with the concept of the right to indicate their wishes with regard to treatment in the future.
First of all I would like to say very strongly that we do support the intent of the legislation. We believe there is a serious need to protect vulnerable adults from abuse and exploitation. Second, we promote the issue of people's ability to express their will with regard to health care treatment. I draw to your attention that this is very close to our hearts since the majority of the people who work for VON are nurses. Advocacy for clients has always been a cornerstone of nursing practice in terms of the teaching of nurses. They are taught to try to ensure that first of all they are meeting clients' needs, and they do that through involving clients in understanding their health status, teaching about health. In fact, we go to formalize that to the point of actually having clients sign their care plans to indicate their participation and involvement in the nursing treatments we give. I would also note for your information that under the Standards of Nursing Practice for Registered Nurses and Registered Nurses' Assistants in Ontario it is a requirement for nurses to also advocate for system changes. Much of the role of the professional nurse in society addresses some of the issues you are trying to cope with when you bring forward this legislation.
Our concern, while supporting the need for advocacy, is also the issue of whether the best system to come forward is a formalized system of advocacy or whether we need to look at options that will be effective but not necessarily overly intrusive in the relationship of the health professional and the client and the family, that work administratively, that are not going to protract or delay necessary care or treatment, and finally, that are not going to be overly costly to the system as we look at a time of scarce resources, as I know you are all very aware, when it comes to health and social services.
We are concerned that as we approach these issues, we really need to look at what the principle is. What are we trying to achieve in society as we come towards these issues? We are making the assumption that basically we want to promote and protect rights. But to do that in our society, to be effective in this pursuit, is regulation the best answer? Is it the only answer? Or if we are going to regulate, how do we regulate in such a way that we get the outcome we want, which is a better system for everybody including those who are vulnerable and require care? We think that in doing this, the committee should think to the larger issues: How is it that we are talking about advocacy? What has happened in our society that we think we have a need for vulnerable adults to be protected by law?
My preamble about the role of nursing is that we believe we must, within nursing, continue to encourage through education and through training the fact that we must be sensitive to the rights of vulnerable adults and not make assumptions, not be paternalistic in our approach to working with them. Second, we would also urge you to look at society overall in terms of what we can do to promote sensitivity to rights by the public in general. Good work has been done in the last while through mass media campaigns to sensitize the public. We would ask you not to think that legislation alone is the answer; we must look to the broader issues.
In terms specifically of the Advocacy Act, we are supporting the need for advocacy. We support the concept of the commission. We recommend, though, that it be broad-based. We note that in the minister's comments in announcing the legislation she spoke to ensuring that it has significant representation from the disabled or those persons who have experienced a disability in the past. We support that concept.
We would also urge you to consider representation for care givers. I am not sure if you have heard from the Alzheimer's society yet. If you have not, I am sure they expect to present a brief, their concern being that the care givers for many of the people with chronic degenerative diseases, whether they be physical- or mental-status diseases, also have issues about involvement in treatment and care, and that they also be recognized as partners and be represented on the commission. We also speak to the need in Ontario always for geographic representation. This is a big province, and the nature of the communities is very diverse. We would urge you to consider that as well.
With regard to your concept of the nominations, with the advisory committee to nominate, we are wondering if it is really necessary or if we are not in a way overbuilding the system. It may be, in terms of your review of this, that you consider it to be necessary. We are wondering whether, if you structure the representation at the commission level, that would not be effective in terms of ensuring that the people at the commission are representative of the people to be served, and using media as well as direct contact with formal and informal groups to get your membership.
In terms of the type of advocate, our preference, again on review of the legislation and our experience, would be to work towards more of the voluntary system of advocacy as opposed to building another -- I hate to use the word --
Interjection: Go ahead.
Ms Murray: -- layer of intervention in society. "Bureaucracy" is perhaps a word that could come to mind, but I do not think the intent is bureaucracy. But we like very much the model you are talking about as one possibility, that of an accredited volunteer force that would be involved in advocacy and that would receive training. We see this as pursuing our overall goals as a society of involving citizens in the ultimate wellbeing of our society in endorsing and supporting pluralism in Ontario.
In terms of this, we are also thinking about -- again those first principles -- what we are trying to achieve here as a society. Do we believe the norm in terms of interaction of clients or vulnerable adults and their families is one where they need protection from one another? Do we believe the norm is that individuals need protection from health professionals? Or do we believe the general norm is that the system works reasonably well but there are exceptions? We want a fallback. We want a method of ensuring that when there are those exceptions, there is protection for people. We think this leads you to more of a system of perhaps at least trying the volunteer concept as opposed to creating an intrusive, ongoing, regulating process that assumes that all interventions require the possibility of a third party -- that is, the advocate and the commission.
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We do note -- and we are not clear about this from reading the legislation -- that there may be a need to enhance the possibility of third-party referral for advocacy. From reading the legislation, it appears as if it is the client himself or herself, or in your terminology the vulnerable adult, who indicates a wish for the advocacy -- or the child who may in fact be deemed to be competent for the purposes of the act. Many of our nurses have brought forward that they do see vulnerable adults living in situations that they perceive are possible exploitation, and would it be possible for them to make referrals to an advocate to work to assist that person to achieve? I think in many cases this may be not only the issue of access to health and social services, but of access to more of the broader issues covered in the social charter, ie, the issue of housing and so forth.
We also note that once you do the Advocacy Act as you have indicated, it is the cornerpiece of those three pieces of legislation. You must then take due consideration to structure the other two pieces of legislation, the Substitute Decisions Act and the Consent to Treatment Act, because they follow one from the other. If you decide to go the voluntary route with regard to the commission and the advocates, I think you will have to rethink how you have structured the role of the advocate in the Substitute Decisions Act and in the Consent to Treatment Act, because there is such a compelling role in those latter pieces of legislation that I think it almost impels you to move towards a paid advocate system. I will go into some examples later on and have specific comments on those particular pieces of proposed legislation.
Specifically in terms of the Substitute Decisions Act we support the concept that we need to recognize the right of people to make decisions for the future about what kind of health care they want. The question we are wondering about is whether we want to formalize this by law or whether we want to use the common law.
In our own experience with long-term care, we have introduced, as have facilities, the concept of the "do not resuscitate" order with our clients who are palliative in nature. We have done that by working with the patient, the family and the health professionals to come up with a system that ensures people receive the intervention they want. We have done this without having the Substitute Decisions Act in place. We think we need to refine this in the sense of allowing people to go beyond just that kind of decision-making to indicate the level and degree of intervention they want for procedures less final than "do not resuscitate."
We would ask you to give some consideration to looking at common law as a serious alternative. I would draw your attention to some of the work by Faye Rozovski out of Halifax, who has given consideration to these questions and occasionally has acted as counsel for VON. She has put forward some of the liabilities as well as some of the positive things about legislating.
If we decide to go with the legislative system in terms of the living will, meaning that ultimately others have the right to go to court for you to ensure that it happens, then I would ask us to consider that people are going to need assistance with establishing the power of attorney for personal care, in that we are legalizing this question which in my previous example of current practice we do without legalizing it. So we need to give consideration to resources for people.
I would like to give you an example. We have had a lawyer from one of our branches for home care review the proposed substitute decision legislation, and this is how we think it is going to work for us. At this point in time, when we are dealing with someone for whom we think there is some potential that he have a power of attorney for personal care, first of all we are going to have to look at whether he is capable or incapable under your definition. We are then going to have to establish if there is a guardian order under the Substitute Decisions Act and, if there is, an attorney for personal care and whether it is validated. If not, we have to arrange for the advocate and notify the public guardian if it is a six-month issue. If not any of the above, we must find the person entitled to give consent on behalf, in the following order of priority: first, the guardian of the person appointed under the SDA or the power of attorney for personal care; second, the unvalidated attorney for personal care; third, the board-appointed representative; or fourth, the spouse or partner, or fifth, the child etc.
Normally we start with the spouse or the child, and I would draw this to your attention: What are we doing in terms of the relationship between patients and clients and health care professionals? At the moment we are not sure how many of our clients we would have to go through these other kinds of procedures with, but we do believe that people in Ontario want the living will. From our experience, we know that our clients want to determine how they are going to be treated in the future. But if we go with this kind of system, it means that many of our nurses are going to be spending a lot of time on those steps of establishing who actually has authority to give permission to follow what we perceive to be the wishes of the client. So again, is there a way to accomplish what we want to accomplish without what we could call such an intrusive system?
I would also like to comment briefly, because I am using up all of my time, in terms of the Consent to Treatment Act. Again, consent to treatment is something we deal with every day, as do all health professionals. However, I would like you to know that of all those clients I spoke of, probably only 1% today would get a formal -- ie, a form-signed -- consent. We use primarily implied consent to treatment. After we have reviewed this legislation briefly -- again, we have not had a chance to do an in-depth review of it -- we are wondering if in fact we are not going to be going from 1% of formal consent to 100% of formal consent.
I draw your attention to section 4, which implies to us at this point in time that if we have a form for consent, that form should be used. In a number of cases we do take a written consent. It has to do with whether we believe the treatment is intrusive and whether we believe there is a significant risk for side-effects for the client. For example, in doing IV therapy in the community we do a written consent for that. If we are drawing blood for a client for an insurance company and there is a risk that they might show positive for the HIV virus, we advise them in a written form under all of the provisions you have in the legislation. However, do we want to now have our whole system move to where we would use that kind of consent as opposed to implied consent? We do support the concept. It is very important, as we move ahead in terms of wanting people to be able to be responsible for their own health, that when giving consent they are fully informed, that consent is a voluntary decision and that it is a consent to a particular treatment.
The other point we would like to raise here, one I am sure other people have raised before us and will after us, is about the definition of "treatment." It is very broad. Much of our work in the community with the long-term-care client involves what we call "activities of daily living." We ask if it would be your expectation that this is a treatment and therefore requires a consent when we assist with bathing or with nutrition or with ambulation. We would ask you to consider whether you might want to define "treatment" a bit more specifically, such that it does not refer to "or other health-related purpose," under which everything in terms of "activities of daily living" might well fall.
We also would like you to consider some provision as to who is the most appropriate health professional to do the consent. If we are doing valve surgery on your heart, I think probably your physician is more appropriate than your nurse. But we leave that to your discretion in terms of the legislation.
We are concerned about the limit of "emergency" within the particular legislation. We are concerned that the emergency is so stringently defined as to be life-threatening. What happens to the 75-year-old in pain who is cognitively impaired, an Alzheimer's victim, so he or she cannot give consent directly? How long do they wait until we get the advocate to see them in order to deal with the issue of pain, of setting their arm and so on? I think we want the ability to be able to provide treatment a bit more effectively in terms of time, than having to have people wait in pain until we pull the advocate in. We may be misunderstanding your intent in the legislation, but we raise that as an issue.
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In summary, I would like to reiterate that we do support the need for the Advocacy Act, that we would support a commission that is broadly representative and that we support a volunteer advocate with an accreditation in a training program. We also support the fact that in your legislation you are proposing a non-legal system but one that would use moral suasion, would advocate with systems and so forth.
But we are concerned when we start to apply it to the Substitute Decisions Act, particularly with regard to the powers of personal care, the legalizing of that, rather than perhaps working on a different way to change the way people practise health care, such that people can indicate what they want done, but in a way that they do not have to have a lawyer, and they do not then have to have multiple levels of administrative intervention to ensure that their will is followed.
Finally, we support the need to work on the Consent to Treatment Act, that it needs to be in place. But we would ask you specifically to consider the definition of "treatment," and also to help us vis-à-vis our question: Does section 4 imply that you really want to move from an informal consent to a formal consent using the written form normally used by the agency?
Thank you, Mr Chairman. Again, on behalf of VON we appreciate the opportunity to present to you this afternoon in terms of some of the issues that have emerged in our initial review of the legislation. We look forward to working with the committee or with others within government, if we can, to assist in the refinement of these very important pieces of legislation.
The Chair: Thank you, Ms Murray. Before we go on to the questions, I think legal counsel wants to clarify something that was brought up.
Ms Spinks: Yes, the presenter was concerned as to where referrals might come from for advocacy services. I just wanted to advise you that there is nothing in the act which would preclude third-party referrals coming from someone such as yourself.
Ms Murray: Thank you.
Mr Curling: The concerns you expressed here were almost identical to what the doctors expressed, especially when you spoke about the emergency aspect of it. Do you see that the consent act here almost stops you right in the track of not performing anything at all as a nurse? We were debating the last time what diagnosis and determination is.
Ms Murray: Right. For the record, I want you to know we have not actually talked to anybody else. We have read the Alzheimer's brief and we have seen some work from the Ontario Hospital Association, so we have come to this conclusion from our own experience. But Johanne, perhaps you would like to comment in terms of the question vis-à-vis: Will this stop treatment in its track, or potentially?
Ms Mousseau: I think because of the broad definition of treatment, it may bring everything to a grinding halt. I suppose if treatment was redefined to be more specific in terms of looking at any kind of treatment which has the potential for physical, mental or emotional harm, then you are looking at all of the activities you have mentioned. They could be health promotion, treatment, rehabilitative treatment, palliative. But otherwise, in its broad context, I feel, and certainly my colleagues feel the same way, that it would certainly bring us to a grinding halt before we could do anything.
Mr Curling: I should first state to you that I am not a lawyer, so some of the questions I ask are really basic. Lawyers have a rather refined and implicated way of explaining things or asking questions. So I would just ask in this very straight manner. You deal with many doctors of different disciplines. Are you saying, then, that in an emergency case, you would almost be stopped, because of how treatment is being defined, what doctor to call?
Ms Mousseau: We would institute treatment ourselves, especially working in the community. In an emergency, we may be doing something that a doctor would do in the hospital and so that really puts us in a terrible position. I think in parts of the legislation -- I need to have my memory refreshed here -- that certainly physicians can act, but there is nothing there about nurses acting in an emergency. Is that not correct?
Mr Wessenger: No. I think, for some clarification, it is a health practitioner.
Ms Mousseau: Any health practitioner?
Mr Wessenger: Any health practitioner may act in an emergency.
Mr Curling: That is why I like lawyers. Sometimes it is the health practitioner and sometimes it gets pretty wide.
Mr Sterling: Or you might interpret "any health practitioner" in your mind in an emergency, depending on how you read the act.
Mr Winninger: We do know it does not include lawyers.
Mr Curling: In understanding this, you proceed on your way until you understand this act, like, "Oh, I understand it." Let's compare it with a policeman who is driving along the road, sees someone driving, pulls over that individual, and the person is extremely tired. So he would say, "Come out," but he is not quite sure if that person is tired -- he looks drunk, so he diagnoses him a bit that way. He, or she, the policewoman, asks for a breathalyser test. So he took the test. In other words, the policeman has acted and moved on to treat or to diagnose himself. Would you say the policeman has more intrusive right of consent to proceed for diagnosis than a doctor in this situation, or a nurse?
Ms Murray: Are we speaking specifically? If we look at the legislation, it says "health practitioner." Before we proceed with a health-related activity -- and I look to Mr Wessenger to clarify it if I am incorrect -- under the definition of treatment under consent, we are precluded until we have an informed consent, if the person has capacity. If the person does not have capacity, we must then move to establish the call for the advocate, in writing etc, and for the advocate to explain to them that they have been deemed to be incapable, and to proceed thereafter.
Mr Wessenger: I think you are correct in the non-emergency situation, yes.
Ms Murray: I guess this is what we are saying: We believe in this, but can we make it work for people, in the sense of, is the emergency situation defined well enough that we could still have the concept of informed consent and the right for people not to have treatment imposed on them, but on the other side to make sure that we do not preclude giving speedy treatment to relieve pain and suffering? In effect, we could find that we go to the home and the person requires a nursing intervention which is reasonable but for which he has not given written formal consent and he is incapable.
Mr Wessenger: Well, I think the minister has indicated that she is looking at the legislation with respect to dealing with the matter of palliative situations, severe pain, so that the health practitioner can deal with the matter of the palliative thing. She is also looking at the question of some other changes. While you have asked me a question, I might ask you a question. Would it help with respect to non-emergency treatment if the role of the advocate was limited, say, on a time basis, every six months or something like that, so that you would not have to continually call back? Would that be of some assistance in this regard?
Ms Aerola: I am thinking about that right now and I am just trying to process as to how that would happen. While you were talking, I was thinking about the types of clients we deal with and the type of environment we deal in and the impact on the individuals out there providing care, as well as the individuals, because we have a very high elderly case load, a very frail case load, and competency may fluctuate with these individuals from one day to another. The whole issue of consent to treatment and advocacy could fluctuate from time to time.
Whether you handle that on a six-month basis if it was established that people may be capable of making decisions at certain times and may not be capable at other times, depending on how their health status is, from my perspective, thinking of the frontline people out there, I see it as an extremely difficult situation to handle, because potentially they are going to have to be in the decision-making role of: "Well, this is what I'm dealing with now. Do I bring in or not bring in?" So in certain circumstances, yes, we may be able to identify that it is sufficient, and then in other circumstances, because of the changes in health status and people's levels of impairment, that may not be suitable.
Mr Wessenger: Yes, I can see what you are saying. At times, one month, you might determine the person to be incapable, you have an advocate come in, advise him of his rights, and then the consent is given by the substitute.
The Chair: Mr. Wessenger, I believe Mr Curling still has some questions left.
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Mr Curling: I know that Mr Wessenger needs a lot of explanation of his own bill.
The nursing field that you are in is much more on the outside in the community quite often. I have heard presentations here talking about deinstitutionalizing many of these institutions, that they could be out in the home and could be served better by the community or by groups.
You would see yourself needing a tremendous amount of consent now, because there are more people now in homes to be treated, so to speak. The bureaucracy you talk about would have to be an extremely efficient bureaucracy to have the advocacy situation in place, the consent situation in place, so you can proceed in doing your treatment. Do you see a real nightmare here? I know you say that advocacy is something you welcome, but to would you say this is rather premature how this is drafted, that maybe they have not thought it through properly? Is that your impression of these bills?
Ms Mousseau: I think there are some problems with the bills. I think that certainly the intent is good. Maybe I could be a little more specific in terms of the whole issue of treatment.
What is difficult for us is not only the idea of having an advocate to consent for the person who is not capable of consenting to treatment, which would slow us down, but the way "treatment" as presently defined, we would be performing multiple treatments in the home. For instance, after you have walked in through the door you may take someone's blood pressure -- anything that is done for diagnostic purpose. We might assist that person with bathing and dressing. That is a health-related treatment. Then we might do a dressing for a wound. Again, that is a therapeutic treatment. So you can see that there are multiple treatments.
What is not clear at this point is, would you need consent for each treatment or would you continue with the present system? For instance, in hospital where you sign a consent form at the beginning, that is for every treatment. I suppose that is not clear.
Ms Murray: If I may also follow up on that idea, very often it may be harder for us in the community than it would be for a physician or in the hospital, because remember, our approach is holistic. We are looking after the whole person, so we are looking at the physical, emotional and psychological needs. Does this imply, as Johanne has said, that we need multiple consents? How long does the consent stay in effect?
Under the legislation you specifically say that it is a consent for a "particular" treatment. So if we could look at that, in the way of phrasing it. I do not want to fall into the trap of saying that we do not need any legislation on consent; we do. What we need is clear legislation that is going to get to the purpose of what we want, which is for people to know what is happening in terms of their health care, to voluntarily give consent, and that the consent is specific to the issue at hand. But is there a way to write the legislation that makes it clear that one consent perhaps could do in the case of long-term care? Your point was well taken, Mr Curling, about the move to providing care in the community. How can we do this? At the moment, as I said, we use "implied consent," the fact that the person has accepted the referral, that he opens the door, that he does not say, "No, don't bathe me," or "Yes, do bathe me."
I again ask you to give serious consideration to subsections 5(3) and then (4), as to whether that implies you want us to move to the formal consent, which will, to answer your question, cause us a great deal of difficulty in the sense of the time it will take to do those and then all of the issues that become involved: changes of health status, cognitive status, when do we call the advocate, when do we get into the list of who can give consent.
The Chair: Thank you, Mr Curling. I think we have a point of clarification now.
Ms Auksi: One point of confusion may be that it is not the advocate who provides a consent. The role of the advocate in the Consent to Treatment Act is purely, where there is a finding of incapacity, to ensure the person knows he has a right to dispute it if he wishes.
You have said that to some degree people you are working with may have ongoing incapacity; they may have fluctuating incapacity. If they had fluctuating incapacity they would probably be in a good position to express what their wishes were with regard to treatment, so you would have competent wishes on which treatment decisions could be based, even in the absence of a substitute decision-maker.
Basically, if you have people who are incapable, then you would really have to be obtaining consent for each treatment or series of treatments. A course of treatment does not mean that there has to be a consent every time the treatment is administered, and I would think in your work there would often be a series of treatments, but really it is one and the same thing that is occurring on a regular basis.
There would be no reason why consent from the substitute could not be obtained, say, at the beginning of such an intervention. You could say, "For the next number of months, these are the things that are recommended." Once the finding of incapacity had been established, once there had been an opportunity to meet with an advocate and either it had gone to the review board or not, and then once the incapacity is established, the substitute decision-maker could make those decisions.
The thing is that preferably, if you were dealing with someone who is ongoing incapable, you would be better off looking to the Substitute Decisions Act with a guardianship regime, because there might be all kinds of decisions, not just health care decisions, involved. In that case, it is the family member, presumably, who would initiate the steps for that, to be an ongoing decision-maker.
Mr Sterling: I am very much interested in your comments, because I have an unbelievable respect for the VON because of the service you have provided to the people of Ontario, particularly in my area in Carleton, where I represent a number of rural municipalities as well as the city of Kanata. I take with great interest and great concern your comments about consent and your ability to obtain consent from an advocate when required.
As I read the legislation now, the only opportunity a health care provider has in even diagnosing a patient is when there is an emergency which is life-threatening. There is some kind of 12-hour limitation. I think the minister is going to drop the 12 hours, if what we hear is correct. My concern is for the pain and suffering of an Alzheimer's patient -- the needless pain and suffering. I refuse as a legislator to make legislation which will allow a person with a broken arm, which I guess you could argue is not life-threatening, to be in pain and suffering for a period of time until we can find an advocate. Would the parliamentary assistant like to enlighten me on how he would deal with that situation?
Mr Wessenger: I think the minister has indicated that is one of the areas that will be changed with respect to the emergency provisions, to try to come up with some sort of language to deal with the problem of the matter of pain. That is one of the many items that is being looked at under the section. We certainly have assurance from the minister that she is aware of the problem with respect to the pain situation and that it is something that will be taken into consideration, along with whatever else we hear. There are many other points that are being raised at these hearings with respect to emergency provisions, and I think we will want to look at all those points that are being raised so we can draft the appropriate changes that are required to meet all the needs with respect to the emergency legislation. That is just one among many aspects that has to be looked at.
Mr Sterling: Yes, but the trouble with us not having a definition in front of us, or a revised definition -- these people have tremendous experience in the field. They represent an unbelievable number of situations that occur out there. Without the definition of what an emergency is or is not, we deny these people the opportunity to tell our committee whether or not your revised definition of emergency will fit into their situation. It leaves me as a member of this committee and the people in a position where they cannot make comment. I think you should come forward with what your thoughts are on this.
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Mr Wessenger: With respect, Mr Sterling, I think we are listening to the concerns that are being raised and I am confident the concerns will be met when we get around to making --
Mr Sterling: How do we know that? We do not have anything in front of us to go on.
Mr Wessenger: That is the purpose of these hearings, to hear the concerns, but we do not make amendments piecemeal; we do it on a comprehensive basis.
The Chair: I believe Ms Murray wants to respond to this.
Ms Murray: I would like to respond to the point raised by the assistant to the committee. That was with regard to the issue of the advocate becoming involved and your clarification of the substitute decision-maker. But let's take the Alzheimer's victim and his family, and it is a non-emergency situation. This speaks to the issue about the office of the public trustee. Have you ever been involved with the office of the public trustee?
Ms Auksi: That is not --
Ms Murray: In terms of the administrative backlog, the problems that -- I am not speaking here negatively about the office, but if we are going to go that route, in this case the family would have to seek the power of attorney for personal care and for property or the substitute decision-making capacity under the act. In my comments I made the point that we are going to have to give families assistance to do this. I have tried to seek guardianship under existing legislation in different situations, not in my capacity now at VON because I am not working directly with families; I am with clients. It is a difficult process, so please take that into account when you are thinking about it, and think about the time it takes to go through those processes.
Ms Auksi: First of all, there are provisions in the Consent to Treatment Act which will allow for usually a family member to step in in cases of temporary incapacity, where it really is not appropriate to go to a formal guardianship, or of course under the Substitute Decisions Act a person could say in advance who he wanted to make decisions for him and that person would be the one who would make decisions for him under the Consent to Treatment Act.
The advocacy role is really in the area of, when is that person incapable? The whole notion is that unless you have somehow had a chance to address that question -- "Do you accept the fact that you are incapable? Do you accept the fact that someone else is going to be making a decision for you and not yourself?" -- that is the role of the advocate, to step in and say: "Do you know the implications of this? Do you agree with this finding? Do you want to go and dispute it?" There is a mechanism, and it is a quick mechanism, much like what is in the Mental Health Act now, for disputing that.
If someone has long-term incapacity, as the Alzheimer's victim would have in the later stages of illness, then if he has not said in advance who he wants to make decisions for him, he may well need to have a court-appointed guardian. If they have that, it would mean they would not be receiving advocate visits repeatedly, because the advocate meeting, as I think Steve could say, is at the point where an application for guardianship is made, and there would not be repeated visits by an advocate in that case.
The Chair: Mr Sterling, one more quick question?
Mr Sterling: Yes. As I understand, one of the things that would work is if the family and the person involved try to avoid the court process. As you say, it is a long and expensive process. It can or it cannot be expensive. But in spite of the fact that the person has made the choice to appoint his child or his spouse as the decision-maker, you still have to call the advocate. That is one of the parts I see as very difficult in terms of, what is the sense of going through it all? The bottom line is that you cannot avoid the advocate in terms of having that person out to the house, every time you want to undertake a new treatment or a different treatment, even though you have the trusted person who has been designated standing beside the Alzheimer's patient. I just do not think the intrusion of an advocate is necessary at that time.
Ms Murray: I think that was the point I was trying to make early on in the first part of the presentation. I think we have to decide, when we are looking to this, what we are trying to achieve in the legislation, and if we in effect have created something more than what we really wanted. It does raise that third party having to be involved when in fact there has been an agreement between the spouse and the person concerned and beyond that in terms of then legalizing the whole living will concept as opposed to using common law to develop it.
Mr Wessenger: I would just like to clarify something with respect to the question of consent. Consent can still be implied under the Consent to Treatment Act. There is no intention to take away the implied consent that now exists. The prescribed forms for consent are only contemplated for the much more complicated procedures that would take place.
Ms Murray: Perhaps that could be specified in the legislation. That is what we are asking for.
The Chair: Ms Aerola, Ms Murray, Ms Mousseau, thank you very much for taking the time out today to give your presentation.
Ms Murray: Thank you very much.
RIGHT TO LIFE ASSOCIATION OF TORONTO AND AREA
The Chair: I would like now to call forward the Right to Life Association of Toronto and Area. Good afternoon. Could you please identify yourself for the record and then proceed.
Mrs Scandiffio: My name is June Scandiffio. I am currently the president of the Toronto and area Right to Life. To my right is Gwen Landolt, a lawyer, and to my left is Eugene Pivato, researcher for the Right to Life association.
I would like to thank you for hearing our concerns. I think a lot of the community's concerns overlap, and I am sure you are going to be hearing many of the same concerns you have already heard previously.
I would like to divide our presentation up so that I speak mainly to a living will and to subsection 47(5) of Bill 108, but as well to Bills 7 and 8. We wish there was more time -- we had applied -- and you should have copies of our briefs to both proposed pieces of legislation, Bills 7 and 8 and the government proposal. We would ask you to look at them, especially our concerns at the end. We will not be able to touch on all of them today because of time constraints.
One of my concerns, I suppose, in looking at Bills 7 and 8 and, as I mentioned, the proposed sections in 108, is the reason: Why we are looking for living will legislation that is worded in the way that it is? According to common law, the patient currently has the right to accept or refuse treatment unless the patient is a minor or in some other way incompetent. Then the family and the attending physician, or in the case here, the VON, together usually try to work out something that is in the best interests of the patient.
We applaud the concern the community has. The legislation attempts to look out for the welfare of the vulnerable, but I have to question whether we have evidence that patients are either being overtreated or treated inappropriately, especially if we are looking at Bills 7 and 8, when they are dying. I would be interested to see if there have been many letters of protest or complaint to the Royal College of Physicians and Surgeons about the care of the dying. I think the presumption behind these bills is that we have been inundated as a community with inappropriate care for the dying. Have families been denied placing their dying relative under the care of another doctor if they do not agree with the treatment plan proposed? We would like to hear about this and what evidence there has been in the community for the necessity of these bills.
Years ago when living will legislation was being proposed, Dr McMurtry, who was at the trauma unit at Sunnybrook Hospital, expressed great concern for himself as a medical practitioner, especially as he worked in the trauma unit. Would he be hampered, similar to concerns we just heard a few minutes ago? When time is of the essence and they have to make snap decisions, would they have to spend the time going through people's pockets to see if they have a living will? If they did not find the living will, would that preclude or presume that the patient wanted a treatment that may not be appropriate? In other words, are we taking away from the doctors the judgement of what is appropriate care in these circumstances?
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Our concerns in terms of voluntariness and again, the definition of "treatment," we find far too vague. We would like that tightened up to see what exactly is meant by "treatment" and what is included. The voluntariness especially of the elderly and vulnerable, who may increasingly feel that they are a burden to society, is a real concern of ours. When they are signing such directives, when they are appointing someone else to make decisions for them, is there true voluntariness and do they understand what "treatment" means? We find it too vague.
In addition, I would like to say that we have concerns about this consent or giving the power to someone else to make decisions about your health care. What is the mechanism for revoking that? We seem very interested in putting it into place, but I do not see any mechanism in the proposed legislation for the revoking of it. I guess that was the concern here with the VON as well, that sometimes it is not always so clear when the person is competent. Would it be just before surgery that you make this decision? In other words, is there an expiry date on it, and what is the mechanism to go through that?
There are a number of problems that we have with the legislation as well that I would like to hand over to Mrs Landolt at this point and then you can question us further.
Mrs Landolt: Our view is that the concept of these bills is to care for people who are vulnerable. We are very sensitive to that and we do appreciate the objective, but our concern is that these bills have far overreached their objectives and will cause more difficulty and more problems for the vulnerable than if we had never passed them.
The position on Bill 74, the Advocacy Act, the concept, is wonderful. There is no question about that. When you have vulnerable people in a nursing home, a chronic care home or whatever, that somebody will be there to speak for them we think is something that is very needed and very important. We are glad to see that they will be drawn from those in the community who are affected, the aged or the people in the AIDS community. That is a very positive advancement.
But we have tremendous problems with Bills 108 and 109. They are so complex and complicated. In the 20 years that I have been reading legislation, I have never read anything as complicated as these bills. Even the Income Tax Act did not measure up to these bills. The difficulty we find with them is that there seem to be enormous loopholes. I will give you one example that I find very troubling.
In Bill 108 you have very clear statements as to the power of attorney for property. Section 8 says how you determine incapacity, section 9 defines it and also it is very clear that section 9 says that the person must have a capacity in order to sign the power of attorney for property. But you have the bizarre situation that the power of attorney for personal care, which means literally their life or death, is not as clear.
It is very ambiguous. There is no statement in there saying specifically that you must have the capacity to do a power of attorney for personal care, which it says specifically with regard to property. There is no provision saying what constitutes incapacity with regard to that personal care, which is present with regard to the property, so you have the problem that a person may well sign the power of attorney for personal care and not have the capacity. I know it was never the intention, but that could be picked out of the ambiguity because subsection 47(9) of the legislation says the power of attorney for personal care does not take effect until validated by the public trustee. Then subsection 49(6) sets out what the public trustee must do. He must send in the advocate and he must do so and so.
Section 50 sets out who may perform an assessment as to capacity but it is not clear that this is mandatory. Subsection 49(7) does state, "The certificate shall state in respect of which functions referred to...the grantor is incapable," upon the opinion of the assessors in 50, but it is not clear this is absolutely mandatory that this person be assessed. It says the following people under section 50 may do an assessment.
The other problem is, who is the assessor and on what grounds does he or she make that assessment? The difficulty is that it is to be set up under the regulations, and such an enormous power to determine life or death should not simply be handed out by regulation. It does not say, again specifically, that they must have the capacity as with the power of attorney. I know it was an oversight and I know it is ambiguous, but it is not precisely clear. This means the person can sign a power of attorney for personal care and it includes, for example, "nutrition." So this person who may be confused, who does not understand, passes over his power and under this the person can legally withdraw the very ordinary care of nutrition.
You may say that is preposterous, but you are leaving the possibility open. As I sit here today I hope it will never occur, but if I have a power of attorney for personal care from someone I also have the power to determine whether the person will get water and food because that is included. It also means that the person who may be socially inconvenient, who may be a vegetable or whatever you want, can have it withdrawn. You are giving extreme power to this one person who has the power of attorney for personal care, which is excessive power and it is very troubling.
The second thing -- I am looking at section 51 -- is that you find a power of revocation for the power of attorney for personal care has only three provisions: first, if a guardian is appointed -- it says the revocation takes place when the power of attorney dies or when the court appoints a guardian when the power is revoked. If the person did not have the power to make the power of attorney in the first place then how does he have the power to revoke it? Hopefully he regains his capacity, but there is great doubt whether he would; and second, when a guardian is appointed, but who will come forward to make application? Does any person? It may be that this again will never come to pass, so it means the person who holds the power of attorney for personal care has enormous power of life or death, which is not delineated. It is not restricted in any way. I will give you an example. Under the power of attorney for personal care, the only restrictions are under subsection 47(6), where the person who has the power of attorney for personal care cannot authorize sterilization or psychosurgery. But you know that a court-appointed guardian has many more restrictions. He cannot order drugs for the purposes of restraint, but this person with the power of attorney for personal care has much broader powers than even the guardian.
I know this is all very complicated and I know it is very boring, but it is very vital to see that these problems -- maybe I can simplify it. I ask you to turn to page 36 of the brief where we do list, hopefully as straightforwardly as we can, some of our concerns which are arising.
I am just giving you an example of some of those complications. You have these four complex bills and maybe all different people are drafting them, but they really are not aware of some of what is happening. I must say it is so confusing that when I was going through them I had a strong temptation to throw the whole works out the window and walk away from them because it was so complicated getting all these bills into juxtaposition to know how they interrelated.
We have great concerns with Bill 109. Much of it was mentioned by the previous speakers on the question of consent, the delays. I do not have to go over all those things again, but Bill 109 also presents a great many concerns to us and, as I say, you can read them in our brief.
0ne of them is a very basic question. For example, it defines someone being able to give a consent as someone 16 years of age. That person may be, say, a 16-year-old girl. What is more provocative than the word "abortion"? She may want one and her parents may not want her to have it. Alternatively, the parents may want it and she may not want it. Under Bill 109, she can go to the Consent and Capacity Review Board, but there is no provision in there for the parent to be notified or to be there before the board. The studies indicate that these young girls do need the support of family, but there is no reference to family, to letting them be notified to appear before the board when this vital life or death decision is being made.
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The other problem is, what we would like to see, because of the financial aspects, the complexity and the vulnerability of the vulnerable person, who I would argue is made more vulnerable by this legislation rather than less vulnerable, is that Bills 108 and 109 be scrapped, yet the Advocacy Act take effect and give the advocate some power.
Under Bill 74 the advocates are set up. It is an empowering act for the advocates, but it does not say what they can do. Again, we have to resort to our old regulations which will come down the mill eventually. But why not let the advocates, if they have a difficulty, report it to the consent review board? Skip 108 and 109, the common law pie with regard to consent. If they go into a nursing home and they see someone is in need of care and is not getting it or whatever, let the advocates then be able to bring an application before the consent review board, but of course the family must be notified. Again, the provision for the family has been pushed down out of sight. Bill 109, whatever the section is, lists who takes precedent in giving consent. That is in 109. The family is way down at the bottom of the barrel. You have everybody else taking precedent over the family, and that again is a problem.
Our recommendation is, one, the Advocacy Act is a wonderful concept, because all of us know that people are vulnerable and need protection. Skip 108 and 109, which are so complex and have so many loopholes, and I have not even begun to touch on some of the loopholes; they are in our brief. What I would suggest is, if he sees a need, let the advocate be able to go over and apply to this consent review board which is set up under 109, and there must be a provision that the family be notified and that the family could be involved.
There are exceptions, there is no question about it, but most families do care deeply about a family member who is ill or vulnerable. Let them have a say; let them be partners in this procedure. They are simply pushed right down almost out of sight in the consent bill. What has happened is, you have a bureaucratic position taking place. The advocates are fine, but they really do not have a role, because their role is they are supposed to be nice and make sure the person is looked after, but it does not say what they do with that. Under Bills 108 and 109, they have to go and see and talk to the people, but the previous speakers have already pointed out the enormous problems of bringing in the advocate.
We do know that the question of capacity for the power of attorney for personal care is not clear. We know there are so many complications from 108 and 109 with regard to consent. Why do we do that? Why do we not just simply follow the common law under the Malette case, which is the most recent case, 1990, when the Ontario Court of Appeal said the patient has the authority to decide? In that particular case the woman was a Jehovah's Witness. She had a piece of paper in her pocket which said, "I don't want blood transfusions," and the Court of Appeal said the doctor was wrong in performing this medical procedure without her consent. That is an enormously strong decision.
We also have other complications. If you put forward this legislation under consent and under all these other provisions, you are going to find that the question of ultra vires comes in. The federal Criminal Code, as you know, has very specific sections -- 219, 215 -- to say what a doctor can do and what he cannot do. It is criminal law. You are going to have an invasion of the criminal law. Certainly as I sit here today, I would suggest that you are going to have a lot of court challenges on this legislation as it stands. I guess that sums up a few of my concerns.
Mr Fram: Your key area of concern about Bill 108 is the appointment of someone having authority under a power of attorney for personal care. This afternoon we had the Metro Toronto Association for Community Living brief, and they are concerned about not having an emphasis on guardianship. One of the suggestions they have made is that one route is using the appointment of someone you trust, the key person you trust as your attorney for personal care. It becomes important for me to understand whether your major concern is whether it is about the capacity to say what treatment you want or whether it is focused on the question of having any authority to choose who will make decisions afterwards.
Mrs Landolt: I will just answer. The first thing is, a person already has authority under the Malette case. The common law has always been that he has the authority. If he or she is incapacitated, you then have the family. You already have the capacity; that is the problem. But the question is, when you give a power of attorney for personal care, their power is so enormous and so broad you do not know if they have a conflict of interest or anything like that.
Mr Fram: First, at common law the family do not have any authority if you are incapable.
Mrs Landolt: Yes, they do. I am sorry, they do.
Mr Fram: Under the Public Hospitals Act regulations, family are named; no other place in common law. The issue did not really arise until the 20th century treatment mode. You have all kinds of family members. You have family members you trust to know what you want and you have family members who pay no attention to you at all. My real question is, do you object to choosing the person who is important to you, or is your major problem about capacity to choose a treatment decision that will bind that person?
Mrs Scandiffio: My concern is twofold: First, voluntariness is absolutely key -- I think we would all agree on that -- and the temptation or perhaps the coercion, either overt or just implied because they feel they are being a burden.
I think the idea of saying you want to select someone you trust is reasonable. The way it is defined, as I understand it, "treatment" is far too broad. That is one of our major concerns: that according to our understanding, if someone signs a living will, "treatment" has not been defined under this legislation. You are giving them carte blanche. We presume that the person appointed or who they have said they want to look after their best interests is someone they trust. We presume that is the case.
However, we have seen cases where the competency kicks in and out. Say I appoint Gwen as my legal guardian or the person I want to appoint to make my decisions. We have not decided, first of all, what "competent" means. When am I incompetent? Again, it is not always so clear.
The second thing is, am I giving her carte blanche? What is included under treatment? That has to be defined. I think a number of people presenting to your committee have said that as well. It is just too vague. The idea of what is going to happen, what is the mechanism for my withdrawing that?
As Gwen mentioned, we have lots of checks and balances when it comes to the financial power of attorney. If we are going to enact legislation on personal health care power of attorney, we should have at a minimum the same checks and balances. As I see it right now, there are not the checks and balances for revoking it, for defining who is competent and that type of thing. If you are going for this type of legislation, the minimum we owe to our citizens is the same protection we give when we are looking at the financial aspects.
The Chair: On behalf of the committee I would like to thank you, Mrs Landolt, Mrs Scandiffio and Mr Pivato, for giving your presentation today. This committee will stand adjourned until 10 o'clock tomorrow morning.
The committee adjourned at 1641.