CITIZEN ADVOCACY OF OTTAWA-CARLETON
ALZHEIMER SOCIETY OF OTTAWA-CARLETON
CENTRETOWN COMMUNITY HEALTH CENTRE SUPPORT GROUP
CANADIAN COUNCIL OF THE BLIND KINGSTON FRIENDSHIP CLUB
COUNCIL ON AGING -- OTTAWA-CARLETON
ONTARIO RESIDENTIAL CARE ASSOCIATION
CANADIAN MENTAL HEALTH ASSOCIATION, OTTAWA-CARLETON BRANCH
BROCKVILLE PSYCHIATRIC HOSPITAL PATIENT COUNCIL
ONTARIO COLLEGE OF FAMILY PHYSICIANS
PSYCHIATRIC SURVIVORS OF OTTAWA
CITIZENS COMMISSION ON HUMAN RIGHTS
INTERVENTION DES SOURDS FRANCOPHONES ONTARIENS
CONTENTS
Tuesday 13 February 1996
Advocacy, Consent and Substitute Decisions Statute Law Amendment Act, 1995, Bill 19, Mr Harnick /
Loi de 1995 modifiant des lois en ce qui concerne l'intervention, le consentement
et la prise de décisions au nom d'autrui, projet de loi 19, M. Harnick
Citizen Advocacy of Ottawa-Carleton
Brian Tardif, executive director
Rejeanne Lalonde, executive committee member
Earl Atnikov
Alzheimer Society of Ottawa-Carleton
Kathy Wright, executive director
Nadia Diakun-Thibault, member
REAL Women of Canada
Diane Watts, researcher
Ottawa General Hospital
Marie-Adèle Davis, acting vice-president, medical affairs
Centretown Community Health Centre Support Group
Wilderness, member
Harry Drury, member
Kenneth Smith
Marianne Taylor
Bill Carne
Robert Froom
Canadian Council of the Blind Kingston Friendship Club
David Renwick, member
Council on Aging--Ottawa-Carleton
Marian Chapman, president
Nicole Guénette, member, Task Force on Aging
Jim Lumsden, member, Task Force on Aging
Carol Burrows, member, Task Force on Aging
Ontario Residential Care Association
David Porter, president
Canadian Mental Health Association, Ottawa-Carleton branch
Joanne Lowe, executive director
Heather Smith-Fowler, member, board of directors
Steve Tennant
Dr Ken Hranchuk
Brockville Psychiatric Hospital Patient Council
Linda Rheaume, vice-chair
Steve Thomas, treasurer
Ontario College of Family Physicians
Cheryl Katz, executive director
Dr Gordon Riddle, director, eastern region
Psychiatric Survivors of Ottawa
Mark Parsons, advocacy coordinator
Citizens Commission on Human Rights
Cathie Mann, director, Ottawa chapter
Intervention des sourds francophones ontariens
Laurent Deguire, consultant and advocate
Monique Deguire, interpreter
STANDING COMMITTEE ON ADMINISTRATION OF JUSTICE
Chair / Président: Martiniuk, Gerry (Cambridge PC)
Vice-Chair / Vice-Président: Johnson, Ron (Brantford PC)
*Boyd, Marion (London Centre / -Centre ND)
Chiarelli, Robert (Ottawa West / -Ouest L)
Conway, Sean G. (Renfrew North / -Nord L)
*Doyle, Ed (Wentworth East / -Est PC)
*Guzzo, Garry J. (Ottawa-Rideau PC)
Hampton, Howard (Rainy River ND)
Hudak, Tim (Niagara South / -Sud PC)
*Johnson, Ron (Brantford PC)
*Klees, Frank (York-Mackenzie PC)
*Leadston, Gary L. (Kitchener-Wilmot PC)
*Martiniuk, Gerry (Cambridge PC)
*Parker, John L. (York East / -Est PC)
*Ramsay, David (Timiskaming L)
Tilson, David (Dufferin-Peel PC)
*In attendance / présents
Substitutions present / Membres remplaçants présents:
Caplan, Elinor (Oriole L) for Mr Conway
Clement, Tony (Brampton South / -Sud PC) for Mr Tilson
Duncan, Dwight (Windsor-Walkerville L) for Mr Chiarelli
Johns, Helen (Huron PC) for Mr Hudak
Marchese, Rosario (Fort York ND) for Mr Hampton
Also taking part / Autres participants et participantes:
Patten, Richard (Ottawa Centre / -Centre L)
Clerk / Greffière: Bryce, Donna
Staff / Personnel: Swift, Susan, research officer, Legislative Research Service
The committee met at 0900 in the Delta Hotel, Ottawa.
ADVOCACY, CONSENT AND SUBSTITUTE DECISIONS STATUTE LAW AMENDMENT ACT, 1995 / LOI DE 1995 MODIFIANT DES LOIS EN CE QUI CONCERNE L'INTERVENTION, LE CONSENTEMENT ET LA PRISE DE DÉCISIONS AU NOM D'AUTRUI
Consideration of Bill 19, An Act to repeal the Advocacy Act, 1992, revise the Consent to Treatment Act, 1992, amend the Substitute Decisions Act, 1992 and amend other Acts in respect of related matters / Projet de loi 19, Loi abrogeant la Loi de 1992 sur l'intervention, révisant la Loi de 1992 sur le consentement au traitement, modifiant la Loi de 1992 sur la prise de décisions au nom d'autrui et modifiant d'autres lois en ce qui concerne des questions connexes.
CITIZEN ADVOCACY OF OTTAWA-CARLETON
The Chair (Mr Gerry Martiniuk): Good morning, members of the committee, ladies and gentlemen. This morning this is a continued hearing of the standing committee on administration of justice and it's deliberations in regard to Bill 19, which is the Advocacy, Consent and Substitute Decisions Statute Law Amendment Act. We will proceed and our first submission is from Citizen Advocacy of Ottawa-Carleton, Brian Tardif. Because of the number of submissions, each submission is limited to 20 minutes including questions, and how you use your time is up to you. You may proceed.
Mr Brian Tardif: Good morning. I'm Brian Tardif and I'll just introduce the other two people who are with me because they're actually going to make the presentation. Beside me, to my left, is Rejeanne Lalonde. To her left is Tom Brooker. Both Rejeanne and Tom are members of the board of Citizen Advocacy. At this point I'll ask Rejeanne to take over.
Ms Rejeanne Lalonde: Good morning and thank you for having us. Citizen Advocacy is an organization that matches a volunteer advocate with people with disabilities or seniors who need help in some way. Because the first thing that Bill 19 does is to repeal the Advocacy Act, we're concerned with the effect that some of the proposed legislation will have on people who are vulnerable, the kind of people we serve.
We recognize that there were problems with the Advocacy Act, but we're concerned that in the process of repealing that act, some of its important elements will disappear. People with disabilities have special needs and they often have to look to others to help them fulfil those needs, and we're talking not just about families here but about the health and social service systems and both paid and unpaid caregivers.
What the Advocacy Act did was to recognize the very existence of vulnerable people. By that we mean that there are people who don't have supportive and involved families. These are people who have to rely on paid caregivers to see to their personal care and to their quality of life. We think that the new legislation should recognize that as well.
Our first concern is that the legislation decreases the protection for consumers and increases the potential for the marginalization of people with disabilities. I'd like to give you some examples of that.
First, a single health practitioner could override the wishes of a substitute decision-maker. There's no requirement that a member of the Consent and Capacity Board be someone with expertise in evaluating capacity. It eliminates the necessity to give reasons in writing for a finding of incapacity unless it's specifically asked for, and there's no process specified to appeal the findings of the Consent and Capacity Board.
Our second concern deals with the inherent, as opposed to the relative, worth of an individual. As resources become more and more scarce, there's a likelihood the judgements on who is going to receive or not receive services or treatment will be made on the basis of the relative worth of an individual. The legislation doesn't recognize that seniors and people with disabilities will become more vulnerable as a result. This can affect all of us, given that hopefully we'll all be old some day.
A good example to give you is the young man in Alberta who had Down syndrome and who was refused an organ transplant. When that decision was examined in more detail, it became obvious that his worth to the community had been a factor in that decision. Luckily, he had a family who cared and who advocated for him.
A weakness of the legislation is the requirement for notification. The legislation requires that once a finding of incapacity has been made, a copy of the certificate of incapacity must be given to the designated incapable person by the assessor. It also indicates that the public guardian and trustee must then inform the person in a manner that is considered appropriate by the public guardian and trustee that they have become the substitute decision-maker and that the person is entitled to apply to the Consent and Capacity Board for a review of the assessor's finding.
The problem we see here is that there is no form prescribed to ensure that these notifications are made to the person who is the subject of the finding of incapacity. There's also no provision made to provide assistance to people who might want to apply for a review of the finding to the board.
The legislation also assumes that a person is either capable or incapable. It doesn't recognize that there are degrees of incapacity; that is, that without help a person may be incapable, but that given some help, they might be able to function adequately. Also a good example of that is the case in Ontario of Justin Clark, who was institutionalized at birth and then had to go through a court process as an adult in order to get back the right to make decisions for himself. Luckily, he had community advocates who were willing to help him fight through that process.
Our third concern deals with the fact that the legislation doesn't recognize, encourage or support the role played by volunteers. In a statement by the minister of Health last July, it was stated, "The central role played by family members and volunteers in the lives of vulnerable people should be encouraged and supported." We don't think the legislation does that. The legislation mentions advice and assistance but little beyond that except that the volunteers will be protected from liability.
Considering the problems that I've talked about, these are the recommendations that we would make for changes to the bill:
(1) That the Substitute Decisions Act and the Health Care Consent Act be further amended to include a stronger recognition of vulnerable persons and provide a more balanced approach to the need for personal protection and the need for personal autonomy.
(2) That the Health Care Consent Act be amended to increase protection for consumers and decrease the potential for the marginalization of people with disabilities by:
(a) requiring the agreement of two health practitioners concerning any decision to override the decision of a substitute decision-maker, section 25;
(b) requiring that at least one member of the capacity and consent board be someone with expertise in evaluating capacity;
(c) requiring that a review of capacity be conducted by a board of at least two members at all times, subsection 71(2); and
(d) requiring that notice of finding in writing be provided at all times and not only when requested, subsection 73(4).
(3) That the Health Care Consent Act contain prescribed provisions to ensure that decisions concerning health care are made on the basis of the inherent worth and not the relative worth of an individual.
(4) That the Substitute Decisions Act be amended to provide for assistance for the vulnerable person who is the subject of the application to the Consent and Capacity Board; and that there by provisions for assistance to a vulnerable person who wishes to request a review of the decision of the Consent and Capacity Board, section 30 of the Health Care Consent Act and section 16 of the Substitute Decisions Act.
(5) That, where an application for incapacity is filed, the process for notifying the vulnerable person of the application be prescribed in the legislation to protect vulnerable adults.
(6) That the role of volunteers and voluntary organizations with respect to the Substitute Decisions Act and the Health Care Consent Act be encouraged and supported by:
(a) more clearly articulating in the legislation what roles and responsibilities could be mandated to voluntary organizations, subsection 87(1) of the Substitute Decisions Act; and
(b) specifying the roles and responsibilities that could be undertaken by volunteers, subsections 87(1) and (2).
We'd be happy to answer any questions in the time that we have left.
0910
Mr Ron Johnson (Brantford): Thank you very much for your presentation. I notice that your group really has done some admirable work in the advocacy area. I want to get to some solutions here with respect to advocacy work, because there's absolutely no debate around this table as to its importance; I guess really it's the methodology that we go about providing that service. How do you see us being able to incorporate all of the community groups that do a lot of very fine work in the field of advocacy, get them kind of working together without creating this bureaucracy to the tune of millions of dollars? How do you see us addressing that?
Mr Tardif: I'm not sure that anybody's going to have the perfect answer at this table, but I guess there are all kinds of groups in the province that do advocacy. Some of them do what Citizen Advocacy does in the form of individual advocacy, and others do systemic advocacy. Maybe it might be important to start with looking at the different levels of advocacy and creating maybe some umbrella groups there, as opposed to one large umbrella group for all of it. That's a possibility.
We at Citizen Advocacy are most concerned with the individual, as opposed to the systemic, so I would tend to think that where we would want to see any action taken is with respect to strengthening and supporting advocacy assistance for individuals. Not to say that the systemic stuff isn't important, but that's where our experience lies and that's where I guess our expertise lies.
Mr John L. Parker (York East): You make a specific recommendation concerning subsection 87(1) of the SDA and the role for volunteer groups. As one such group yourselves, can you assist us with what sort of role you would like to see yourselves given in the statute?
Mr Tardif: I would say that the volunteers, certainly volunteer advocates who are involved with Citizen Advocacy, not just in Ottawa but in lots of other Citizen Advocacy organizations in this province and elsewhere, what they do is they provide a very personal approach to a vulnerable person's difficulties. So we talk about how Bill 19 depersonalizes the approach to a substitute decision-maker being appointed and the approach to a finding of capacity or incapacity. A volunteer can provide the assistance that a person might require or wish to have in those deliberations.
The other thing is, when we're talking about people who are really vulnerable, what we're finding is that it's the volunteer advocates who are the people who are watching out for them, because they don't have anyone else. Quite frankly, they're doing it, but they don't have any real authority to do it. I think that's one of the main gaps that exists at the moment.
Mrs Elinor Caplan (Oriole): I'd like you to be a little more specific as to the kinds of amendments that would achieve your objectives, given the fact that the government is determined to eliminate the entire Advocacy Act as part of this bill. What sections do you think should be amended that would give the protections for vulnerable people that you're looking for?
I understand where it is as far as giving them information and helping them to make an appeal, and I think those areas can be strengthened. But you made quite a general statement, "to increase protection for consumers and to decrease the potential for the marginalization of people with disabilities," and you've stated four areas. I'm wondering whether you have any specific amendments other than those four areas that would assist, for example, in areas of education for providers or for families or for patient consumers themselves. There's no mandate for anyone to do any education in this legislation. Have you thought about that at all?
Ms Lalonde: The elements we have thought about are either in the presentation I've made this morning or they are in the brief, although I have tried to summarize the brief we have given you. Those are the elements that we think are the most important. I don't know of any other specific recommendations we could make, although we would certainly be happy to give it another look and try to come up with some.
Mrs Caplan: I think your first recommendation is a particularly important one, where it says, "That the Substitute Decisions Act and the Health Care Consent Act be further amended to include stronger recognition of vulnerable persons and provide a more balanced approach to the need for personal protection and the need for personal autonomy." Many of the safeguards have been removed from the legislation. It in fact weakens that, but you haven't been specific as to which ones you'd like to see put back in, outside of having an Advocacy Act. If you'd like to think about that and give us your suggestions, I'd be happy to hear them.
Ms Lalonde: We would certainly be happy to do that.
Mrs Caplan: Also, I'd like to know, when you talk about volunteers, I think that's extremely important. Certainly they've been the backbone of providing assistance to vulnerable people for many, many years. One of the concerns that I have, however, is in the area of training, because sometimes, as well meaning as we can be, unless people receive the kind of training, then I don't think they're as valuable in providing that assistance. I wondered if you thought about that at all.
Ms Lalonde: Certainly, as an organization, we are very concerned with the quality of advocacy and supports that our volunteers provide. I'll leave to Brian the care of telling exactly how we achieve that.
The Chair: The time is up to answer that question. I'm sorry. Mr Marchese.
Mr Rosario Marchese (Fort York): Thank you for your submission. I wanted to highlight a few things that a number of other people have been saying. Because we don't get too much time to ask people questions, they simply don't get to be highlighted, but there have been a number of people who have been saying, "requiring that notice of finding in writing be provided at all times," which is in the existing legislation, and that's been removed.
"Requiring that a review of capacity be conducted by a board of at least two members." There have been a number of people already who have spoken about that, particularly consumer survivors, who have said that it's terrible to have to rely on just one person for a determination of your capacity or incapacity and that's frightening. So people have been saying that.
Your recommendations 4 and 5 as well are consistent, where people have been saying, "We need advocacy and we need rights advisers, in whatever form, and if you can't accept the Advocacy Act as we have it with the Advocacy Commission, we still need advocacy and rights advisers." We've been getting a number of suggestions from people on how to do that. It would be, in my view, almost unconscionable that this government would not act on that, given that 95% of all the deputations have said, "We need that." So I thank you for that kind of support.
Doctors have been saying that it would be harmful to give rights advice to patients, that given their condition, if they had informed them of the kind of problem connected to incapacity, that could do more harm to them. The other point they made was that doctors are not lawyers and rights advice is almost a legal matter, not something that they normally do or I guess should do. Do you think that not giving information to people might be in fact more harmful than to do the opposite, that not to give them information is more harmful than to withhold information?
Ms Lalonde: I'm certainly not a psychologist or a psychiatrist to determine what is going to do mental harm to another individual. However, as an organization, we believe the people we work with are capable of making decisions in a lot of cases and we give them the benefit of the doubt. I'm not sure it's up to the government or to anybody else to determine that I as an individual don't have the capability to make decisions for myself until that decision has been made in some kind of impartial and objective venue. So I would would err on the side of giving information to an individual whose life is involved.
The Chair: Thank you very much. Your time is up. We appreciate you condensing your written submission and that'll be reviewed by the committee.
0920
EARL ATNIKOV
The Chair: Mr Atnikov.
Mr Dwight Duncan (Windsor-Walkerville): Mr Chairman, my agenda's showing Mr Capelle.
The Chair: Yes, it's been changed.
Mr Duncan: What was his name again? I'm sorry.
The Chair: Atnikov. You are in place of Mr Phillip Capelle?
Mr Earl Atnikov: Yes, Mr Chairman. I've been slotted in at the last moment, if I may.
Thank you, Mr Chairman, honourable members. On behalf of the members of the local bar in Ottawa representing patients and review boards, I am pleased to have this opportunity to address some of the concerns we have with respect to the proposed amendments and their effect on perhaps the most vulnerable population in our community.
If we as a province and as a community are to be judged by the manner in which we treat the weakest and most disfranchised among us, I fear that these proposals will leave us wanting in the eyes of our children, and indeed it is our children who may use these very amendments to deny us basic rights and freedoms without meaningful recourse or protection.
The broad language setting out the purposes of the Health Care Consent Act, and I'm referring to clause 1(c) and 1(d), "to enhance the autonomy of persons for whom treatment is proposed...." and "to promote communication and understanding between health practitioners and their patients or clients," is, in our respectful view, not realized by the legislation in its current form and will often fly in the face of another stated purpose, that is, of clause 1(e), "to ensure a significant role for supportive family members when a person lacks...capacity."
In my reading of the proposals as drafted, emphasis is placed on a paternalistic health care system and individuals' families to make decisions regarding admission and treatment to care facilities. These take precedence over the individual's wishes, and the purpose appears to be to allow simply for administrative ease over those rights we all hold very dear.
It is our view that with these amendments, the balance has now swung back years in the protection of those who need it most. This is demonstrated in three major areas that I wish to just highlight briefly, and those are the rights advice, the makeup of the board for certain hearings and the requirement of providing written reasons.
Firstly, with respect to rights advice, equal access to the law implies knowledge of the law. We are dealing with, we must recognize, a vulnerable population whose basic freedom is at stake. We are also dealing with a population which is very impressionable. To ask of psychiatric facilities to designate persons or classes of persons to perform the functions of a rights adviser under the Mental Health Act or to appoint volunteers for this purpose or to have the minister appoint rights advisers does not adequately, in our view, ensure that these individuals are receiving independent and full and fair information regarding their rights. Indeed, it places the hospital and doctors and other facilities in a clear conflict, for it would be the psychiatric facility or doctor who has just certified that individual and restricted that individual's freedoms. While most psychiatrists are no doubt conscientious and well meaning, to expect them to provide this balanced information is expecting, in our view, simply too much. I also understand that some hospitals and doctors are clearly uncomfortable with the proposals and having been put in this position.
It's our view that an independent body is needed to provide this rights advice. It need not be the Advocacy Commission as it stands currently. There have been processes in the past that have worked rather well, including sending out, for example, lawyers on a legal aid, duty counsel basis from the legal aid office, as under the next-to-last amendments. What we do have, however, are individuals currently who have been well trained in providing this advice in a balanced and fair manner and who will allow for individuals to make decisions to, for example, appeal or not appeal a decision of a finding of incapacity or committal.
We also request this committee to consider that Ottawa is peculiar in that we have no provincial psychiatric hospital. We are dealing in an area where there is solely acute care beds, and accordingly we have no patients' rights advocacy office.
As Ms Caplan, in questioning the previous presenter, mentioned, I think she expressed a concern with respect to having volunteers do some of this work. It's my feeling that volunteers simply, without any training, are not in the position to provide this very needed service.
Beyond the advice itself, there is section 75 of the Health Care Consent Act, with reference to individuals being represented by counsel or agents. We feel that, given the seriousness of the consequences for individuals before a board, individuals should be allowed access, and in fact guaranteed access, to counsel, including legal aid, if otherwise qualified.
Second on our agenda is subsection 71(2) of the proposed Health Care Consent Act, which allows a single member of a board to sit alone in dealing with issues of capacity. As the previous presenter indicated as well, there is concern that that poses some concerns, given the fact that there may not be any particular expertise in that individual to make decisions of capacity. We must recognize that these decisions are far-reaching and have serious consequences to the individual. In talking to members on boards and doctors, I believe it's the general feeling that the expertise of, for example, psychiatrists, in assistance and guidance to the board in dealing with such issues would be invaluable. In our view, again it's a demonstration of the administrative ease that has taken precedence over an individual's rights and the ability to pursue those rights in a fair manner.
Thirdly, subsection 73(4) of the act requires the board to issue written reasons only on the request of a party. While we anticipate that if counsel were present, they would be a regular occurrence, the written reasons would be requested in every situation, the question I simply put to the committee is why the onus would be shifted to the individual to request reasons for a decision to in effect restrain one's freedoms, especially where that person may indeed not be represented by counsel. When we are dealing so intimately with the security of the person as we are in these situations, we find this proposal reflects the tenor of the legislation as a whole, which is to facilitate the placement and treatment of individuals at the expense of a fair protection for individuals under the law.
Those are my comments. I thank you for this opportunity and I hope this has been of assistance.
0930
Mr David Ramsay (Timiskaming): Thank you for your presentation. I'd like to narrow in on rights advice and just try to clarify what you're saying. As you know, under the present legislation, after a finding of incapacity the onus is on the person who made that declaration to advise the patient that he has the right to appeal that. That's not there, as you pointed out, in the legislation we're talking about today, the Health Care Consent Act. I just want to be clear: Who exactly do you feel now should give the rights advice?
Mr Atnikov: The situation we have currently is with the Advocacy Commission, where they have trained individuals, trained rights advisers, to provide that information. That seems to have been working fairly well. In the past it was lawyers going out as duty counsel, and as required by the previous Mental Health Act under the legislation legal aid lawyers were going out, again an independent body. It matters perhaps less as to who is actually doing it; it's just that they'd be properly trained and independent and provide a fair and balanced indication of an individual's rights.
Mr Ramsay: So there would have to be some sort of mechanism that once the health care professional makes that decision, then somebody would have to be notified, this independent rights adviser, and then that person would come in and talk to the patient.
Mr Atnikov: I think there must be a mechanism where notification in every case, for every decision in effect that restricts an individual's basic freedoms, must be in place.
Mrs Marion Boyd (London Centre): Thank you for your presentation. I can understand entirely why the local bar would be concerned about the situation in terms of the lack of rights advice. You made the comment that you felt most of these amendments really were showing that the government was looking at administrative simplicity, and I would add financial savings, as opposed to individual rights. I think that is the real danger. From your perspective as a lawyer, do you not think that's a fairly short-term saving in the long run? Don't you really agree that in the long run the kinds of challenges to this sort of ignoring rights is going to be more expensive?
Mr Atnikov: I think there's a real question of whether some of this will hold up under certain challenges before the courts. The stated purpose of the proposed legislation, to ensure significant rural support of family members, in some cases, perhaps in many of the cases, misses the point of the kind of population we're dealing with here. In effect, I think it's just marginalizing further an already very weakened, disfranchised segment of our community, at great risks to the community as a whole. That's really the emphasis that I would like to stress.
Mrs Boyd: Particularly this issue of having a single member alone, with no requirement that any member of a board, whether it was the three members or two or one, have any particular expertise. When you look at a single member with no expertise in the assessment of capacity, it certainly gives rise to a great deal of concern among vulnerable communities because they've been taken advantage of before, have they not?
Mr Atnikov: I think a lot of individuals I've run across in my practice would say they've been taken advantage of. To have, for example, a doctor give certain advice probably places that doctor in a more difficult situation with the patient, with the client, and defeats again one of the stated purposes of the legislation.
Mrs Boyd: It's really difficult, isn't it, knowing the population that is affected and knowing the vulnerability. This whole issue that first of all they're not necessarily being informed that they're incapable, and then not necessarily being informed that there's any appeal against that finding, and then not having any way to ensure that substitute decision-makers are being honoured in the system. The whole thing is really very difficult, isn't it?
Mr Atnikov: I find it difficult. Thank you, Mrs Boyd.
Mrs Helen Johns (Huron): I just wanted to draw your attention to the Mental Health Act, that basically stated that rights advisers for government-run psychiatric hospitals had to be government employees, part of the PPAO. From other psychiatric institutions, those people would be set by regulations, but it is certainly our intention not to have someone involved who is a member of the clinical team. We would have someone, ie, the chaplain or someone who is on another team. I think we address your interest there.
I was very interested in your comments about the Consent and Capacity Board and the one-member team. We put this one-member team in because it was very difficult, in rural and northern Ontario, to get the board together in a very timely manner. In fact, in some cases it's taking seven days to get someone. When you said the person had to have really no qualifications, I'd like to draw your attention to 71(2)(a) through (d), which says the person has to be a lawyer, has to be a member of the Ontario bar for at least 10 years, has to have been on the board for at least two years so has seen this process go through a number of times, and possesses any other qualifications set by the board.
I think those are pretty substantial qualifications and I somewhat take issue to the fact that you said they don't have qualifications. Do you want to comment on that?
Mr Atnikov: It says the chair may set certain qualifications. Those aren't outlined in the act and I haven't seen the regulations.
Mrs Boyd: No one has.
Mr Atnikov: That leaves me with some concern.
Mrs Johns: Clauses 71(2)(a) through (d). Those are not the regulations. That's the legislation.
Mr Atnikov: But (d) says "he or she meets all of the other qualifications specified by the chair."
Mrs Johns: Yes, but she or he at least has to be a lawyer, has to be from the Ontario bar and has to have two years of work on the board. Those are pretty substantial qualifications.
Mr Garry J. Guzzo (Ottawa-Rideau): It depends where you're sitting.
Mr Atnikov: When you're dealing with issues of capacity, I think there's a particular expertise that one would want to bring to the board. I'm not saying that it isn't there or it won't be there. I'm saying there's more of a concern, when you're dealing with one person who is making a decision, with far-reaching consequences to an individual who may or may not be qualified. I'm not saying that in all cases they won't be qualified.
In terms of why a one-person board might be composed for regions, say, in northern Ontario, frankly, if seven days is what it takes for a hearing to be held, then seven days is what it is. I think when you're dealing with an individual's decisions and taking those decisions away from that individual -- excuse me, sir?
Mr Frank Klees (York-Mackenzie): What about the patient?
The Chair: I'm sorry. Mr Atnikov, I thank you for your presentation.
ALZHEIMER SOCIETY OF OTTAWA-CARLETON
The Chair: The next submission is the Alzheimer Society of Ottawa-Carleton, Ms Kathy Wright, executive director. Welcome. Could you identify the other individuals who might take part in the presentation for the purpose of Hansard.
Ms Kathy Wright: This is Nadia Diakun-Thibault, who will be actually making the presentation. I apologize, I did call on Friday to give that information. Nadia is a former board member and current member of the Alzheimer society and served on our public policy committee for many years. On my far left is Pat Murphy, who is on our board of directors and is our legal counsel.
Ms Nadia Diakun-Thibault: Thank you, Mr Chair. With your package, you have received from us a clause-by-clause discussion and some points and some of our concerns as they are reflected in Bill 19. You can read those at your leisure. We trust that you'll take them into serious consideration.
Interruption.
0940
Ms Diakun-Thibault: I hope that's not the Premier calling from Hong Kong.
The Alzheimer Society of Ottawa-Carleton exists to increase the understanding of, and most effectively alleviate, the personal and social consequences of Alzheimer disease through patient and family support, information, education and promotion of research. Alzheimer disease is a disorder of the brain causing loss of memory and serious mental deterioration.
At first, the person with Alzheimer disease exhibits only minor, almost imperceptible symptoms that are often attributed to other illnesses. As memory loss increases, changes also appear in personality, mood and behaviour. It may take longer to complete a simple chore; judgement, concentration, speech and physical coordination may also be affected. The symptoms are usually progressive, but there is a great variation in the rate of change from person to person. The person with Alzheimer disease is often unaware of or may deny the full extent of his or her limitations.
The illness is a source of deep frustration for both those afflicted and for their loved ones. Caring for an Alzheimer person is a 36-hour-a-day job. An estimated 300,000 are affected in Canada; approximately 7,000 persons in the Ottawa-Carleton region have Alzheimer disease.
The fluctuating capacity of an Alzheimer person, the absence of a definitive test for Alzheimer disease in early stages and the ever-decreasing capability of the "sandwich generation" to care for their aging parents in the light of their own aging have placed a tremendous socioeconomic strain on many families. There aren't enough facilities to care for Alzheimer persons in a manner that would address their particular needs.
We must consider those with Alzheimer disease as incapable of granting consent to treatment and to manage their property. Whatever capacities the person may retain throughout the steady progression of the disease, these become more and more limited as to make decisional participation moot.
Bill 19 proposes changes to the Substitute Decisions Act and Consent to Treatment Act which in our opinion may have a deleterious effect on persons with Alzheimer disease and their families. We see some of the provisions of Bill 19, the Health Care Consent Act, as weighted in favour of the health practitioner, the care facility and the personal assistance plan manager rather than the substitute decision-maker, often a family member.
First, we would like to dispel the notion that there are many treatments that pose little risk or harm. The understanding of risk or harm is relative to the individual. Changing the formulation of a prescription for persons in their twenties may pose no additional risk, while such a change could be serious for a geriatric patient. What is considered the statistical or clinical norm is not necessarily applicable to the elderly. Consider a non-invasive diagnostic test such as a CT scan or MRI, which requires the cooperation of the patient. For the cognitively impaired person, executing simple commands is often extremely difficult.
Subsections 19(2)(c)1(ii) and (iii) and companion sections 40 and 57 effectively suggest that if a treatment is likely to "reduce the extent to which, or the rate at which, the incapable person's condition or wellbeing is likely to deteriorate" the health practitioner is given an override of a substitute decision-maker's right to refuse such treatment on behalf of an incapable person.
For example, the patient is an 86-year-old Alzheimer person in respiratory distress. The treatment proposed is intubation and placement on a ventilator to facilitate respiration, and the likelihood of this being a temporary measure is slim. This course effectively prolongs life for a seriously debilitated individual. The substitute decision-maker refuses consent to intubation and asks that palliative care be administered instead. Section 35 allows the health practitioner to claim that it was an emergency, allege non-compliance with section 19 and apply to the Consent and Capacity Review Board.
The board may substitute its opinion for that of the substitute decision-maker and give directions, and if the substitute decision-maker does not comply with the board, then the substitute decision-maker is deemed not to be authorized to give or refuse consent on the incapable person's behalf. The board's ruling would not be based on evidence of fact but would be rendering judgements of compliance or non-compliance based on principles of medical ethics, bioethics, moral autonomy.
What gives an administrative tribunal the right of a court to override a legally executed document, such as a power of attorney for personal care, perhaps with an appended advance medical directive? In our opinion, such a contrary action on the part of a health practitioner in the case we have illustrated would have deleterious effects on both the person and the family.
The long-standing common law provision of a person's right of self-determination must be preserved. The common law provision of informed consent must be upheld, and a person's wishes in the event of irreversible incapacity regardless of causation must be honoured.
By granting such decision-making powers to the Consent and Capacity Board, the Legislature is subdelegating a power to an administrative tribunal that is more properly in the domain of the courts. Decisions rendered under section 35 would set precedent.
Inasmuch as the Consent and Capacity Board is also given the power to sit in a panel of one, three or five and the decision of a panel of one shall be deemed as the decision of the board, is it the intention of your government to change the very nature of dispute adjudication away from the court, where strict rules of evidence apply, to place it where "in the opinion of the health practitioner" carries greater weight than fact? Is it the intention of your government to delegate matters of consent to treatment to a panel of one and have the force of common-law precedence?
Matters of consent, determinations of decisional capacity and incapacity on property and personal care are too grave to be decided by a panel of one and rendered in 24 hours.
This bill further implies, albeit not explicitly, that adequate care for incapable persons is possible in the home. Section 40 and companion compliance section 52 could be used to refuse the admission of an Alzheimer person to a care facility because, in the opinion of the evaluator, the Alzheimer person's quality of life would be better in the home rather than in a care facility.
For those who suggest that there are adequate community supports, such as day-away programs, Meals on Wheels etc, think again. Your government has proposed serious reductions to community and social programs. If this were your parent, your spouse, would you be able to care for the person at home in the face of economic hardship or your own reduced capability to provide around-the-clock care? It is a statistical fact that elder care in Canada is provided primarily by spouses -- females -- daughters, daughters-in-law, granddaughters. Is it the intention of this government to disadvantage women?
Bill 19 proscribes the use of appropriate monitoring devices or means of chemical or physical restraints. Alzheimer persons often have excess pent-up energy and wander. Their somewhat difficult behaviour could be used as a cause for their deinstitutionalization, as it were, from a care facility, to be sent home or other place, citing this section. Anxiety and agitation, often common among persons with Alzheimer disease, is not necessarily a threat of bodily harm to themselves or others, and low doses of neuroleptics can help control the condition.
It would seem that this section could be applied to such security devices as door alarms, perimeter alarms, secure floors. Is it the intention of this government to force the care of persons in early stages of Alzheimer disease to be provided in the home until such time as the person's condition has deteriorated to the point they are no longer ambulatory?
Bill 19 proposes to remove conditions currently found in section 16 of the act, conditions which stipulate that an assessment should not be performed unless the assessor first explains to the person the purpose of the assessment, the significance and effect of a certificate of incapacity and the person's right to refuse to be assessed.
In the early stages of Alzheimer disease, the person maintains varying degrees of comprehension and appreciation. This fluctuating capacity is difficult to work with. Regardless, the person is entitled to be properly informed.
This bill outlines that evaluators shall be persons as defined: audiologist/speech-language pathologist; nurse; occupational therapist; physician/surgeon; physiotherapist; psychologist.
By virtue of the evaluators' belonging to a particular professional college does not automatically qualify them to determine capacity for admission to a care facility. What assurance will be given that such evaluators will be properly trained to perform a capacity assessment? Would anyone -- any one of you, perhaps -- readily agree to have capacity determined by a family physician with little knowledge of neurology?
Certification of evaluators must assure the public that they are fully qualified to carry out the rigours of capacity assessment and minimize error and inaccurate assessments. It is not enough to use the principle of fiscal responsibility in an effort to lower the cost of assessments by broadening the class of assessors without strict regulations, guidelines and criteria for certification.
Bill 19 also seems to propose that a person who provides health care and residential, social and training or support services may hold a power of attorney for property or a power of attorney for personal care on behalf of a patient, resident, client, with the exceptions of statutory guardianship of property or person.
It is a pecuniary conflict of interest for the owner of a residential care facility or administrator of a home for the aged to hold a power of attorney for property on behalf of a resident. It is an ethical conflict of interest for a health practitioner to hold a power of attorney for personal care on behalf of a patient.
The proposed amendment to 57(1) seems to fetter the court in its consideration of the public guardian and trustee. That would seem to be ultra vires the Legislature. The state has a duty and obligation to its citizens to protect their welfare. For those incapable persons without family or persons willing to act as their guardians of property or the person, removing the PGT abrogates that obligation.
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Section 58 repeals sections 87 and 88 and makes provision for "volunteers to provide advice and assistance" to the public guardian and trustee under the act. Just what does this mean? Volunteer rights advisers, volunteer guardians of property, volunteer guardians of person, volunteer advocates? Then further, no liability "for any act done in good faith in the execution or intended execution of the volunteer's powers and duties"?
The public guardian and trustee should not require volunteers or conduct any business using volunteer help, not even for clerical duties. It would jeopardize the confidentiality of records, which could be seen by persons who are not accountable. It is inappropriate for the crown to engage in volunteerism within the Ministry of the Attorney General and to extend immunity to persons who are not directly employed by the ministry.
The minister has every opportunity and right, without a specific clause in statute, to invite persons to provide advice on policy or other matters. Advice and opinion may be accepted or rejected.
We hope that the notion of volunteers performing duties for the public guardian and trustee is not a halfhearted effort and gesture on the part of this government to placate supporters of an advocacy system on behalf of vulnerable persons. We believe in advocacy for the elderly, especially for persons with Alzheimer disease and their families. We do not, however, support the use of volunteers at PGT.
In delivering the certificate of incapacity, there are no safeguards to protect the confidentiality of the person, to assure that the notice will not fall into the wrong hands, to assure that the contents and effect of the notice will be communicated to the person and the substitute decision-maker, albeit that the person may not comprehend or be able to read the document, and done so in a proper fashion.
The Alzheimer Society of Ottawa-Carleton firmly supports the principle that government intervention should be the last resort. We firmly support the principle of informed consent and appreciate well the challenge and difficulties of applying it to an Alzheimer case. The nature of neurological disorders makes it very difficult to implement informed consent in a very meaningful way, and therefore it is incumbent upon the health practitioner and others to be well prepared when dealing with a patient with cognitive impairments. If the revisions to the Consent to Treatment Act are to be in any way useful, the application of the act must be rational and realistic.
It would be prudent for this government, considering the increasing numbers of elderly in the province and the inevitable aging of the baby-boomers, to initiate policies that will address future needs. Such a visionary approach could begin with the establishment of an office of the Ombudsman for the elderly to tackle such problems as elder abuse. It would be prudent for this government to take demographic data seriously as a statement of the future. It would be common sense.
Mrs Boyd: Thank you very much for your presentation. The concerns that you've mentioned about confidentiality, about the need for appropriate information --
Ms Diakun-Thibault: I'm sorry, Mr Chair. I cannot hear the member.
The Chair: You'll have to speak a little louder, Mrs Boyd, I guess.
Mrs Boyd: I think it was the noise on the other side of the table, Mr Chair.
Thank you for your presentation. The concerns you've expressed about privacy of information and about the override by physicians of substitute decision-makers, given the sections that allow the physician to apply to the board, just on a belief that the person may not be following those rules under an advanced directive, are quite concerning to a lot of people. But you've expressed it much more forcefully and clearly than many groups that have come before us and it's very helpful for us.
I noticed that you've appended a clause-by-clause section which will be very, very helpful to us as we go through the clause-by-clause and I really thank you for doing that, because it represents a lot of work.
I guess the one thing we hear from you is that families may be caring and loving and wanting to help, but the expectation that they can do that on a 24-hour-a-day, seven-day-a-week basis -- in fact you described it as 36 hours a day and I understand what you mean -- is not very realistic. Every time someone comes before this committee and talks about the need for rights advice and for advocacy at arm's length and apart from the family, the government starts talking about this mythical family that can manage all these sorts of things. So thank you for making those comments.
Mr Tony Clement (Brampton South): Thank you very much for your comments. I wanted to say just right off the top that you've raised some very serious concerns from your perspective and we'll have to review the legislation as we go through this process, because it certainly was not the intention to disadvantage women, to create a structure which was going to disadvantage victims of Alzheimer disease. We'll review the legislation from your eyes and ensure that that is not the case.
Ms Diakun-Thibault: Excuse me. We'll be waiting for the amendments very eagerly.
Mr Clement: We'll be reviewing it from our perspective and see whether your view is valid or invalid according to our perspective, and that's what the legislative process is all about. But I thank you for your input.
I just wanted to talk about section 35 once more, because you reference very, very quickly in your paper section 19, which is what section 35 refers to, to see whether the health practitioner views the practice that is being supported by the substitute decision-maker as being within the bounds of section 19.
If you look at section 19, as I'm sure you have, you'll realize that the values and beliefs of the vulnerable person are very much first and foremost in considering what's in the best interests of that vulnerable person. I'm just wondering whether you've taken that into consideration in your remarks, because it seems that we have covered off that particular concern and have ensured that the substitute decision-maker is not overruled just willy-nilly. It has to be in reference to what's in the best interests of the person.
Ms Diakun-Thibault: I have read sections 19, 40 and 57, respectively. They are clones of each other with modifications. I have read section 19 perhaps now 500 times, and that's not a light number that I would say, because I wanted to make sure that I understood what the implications were.
The seminal difference is --
The Chair: Sorry. Mr Clement, I'm sorry, your time is up. I'm sorry, ma'am.
Mrs Caplan: We'll use our time to let her finish that question.
Mr Duncan: Yes, could you please continue.
Ms Diakun-Thibault: Thank you very much. I appreciate that. The seminal difference between section 19 as it appears in this bill and as it was in the previous bill is 19(2)(c)1ii and iii; (c) is the addition. In our reading, it seems to suggest that it goes far beyond simple considerations of the wishes of the vulnerable person. There is an implicit judgemental suggestion that a health practitioner has greater and better judgement by virtue of education or training. I do not think that that is necessarily the case. I think that in some instances this may be correct and it might be applicable. However, I think that if there is a valid power of attorney for personal care and explicit advance medical directives, there is no need for that section whatsoever and no need to second-guess the substitute decision-maker nor the person who has expressed those wishes.
Mr Duncan: I'm new to this, and I just want to make sure I understood all the proposed amendments you have. What you're suggesting to this committee is that the bill gives too much power to health providers and not enough either to victims or their families in supports and that the proposals you've outlined will help set those balances in better order. Is that correct?
Ms Diakun-Thibault: Yes. If it is the intention of the bill, as it says in its preamble, to facilitate communication, then please do so. I don't see that suggestion in the proposed changes.
The Chair: Thank you for your presentation.
REAL WOMEN OF CANADA
The Chair: The next submission is from REAL Women of Canada. Perhaps you could identify yourselves for the purpose of Hansard.
Ms Diane Watts: My name is Diane Watts. I'm a researcher with REAL Women of Canada, and this is Sophie Joannou, on the board of directors of REAL Women of Canada.
We make four recommendations, you'll note, at the end of our brief: the age of consent for minors to be set at 16 years of age; families to participate as a right in all applications to the Consent and Capacity Board; when a partner's substitute consent is given, there should be a requirement that the incapable person's family be notified and consulted; and the "best interests" of an incapable person should include a presumption in support for treatment and an application to the Consent and Capacity Board be required before any withdrawal of treatment occurs. I'll try to explain that as I go along.
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Realistic, Equal, Active for Life: Those are the meanings of REAL in our name, REAL Women of Canada. We're a non-partisan, interdenominational organization of independent women, federally incorporated in 1983. We come from all walks of life, occupations, social and economic backgrounds. We promote equality for all women, the concept of which is expressed in the E in our acronym, REAL Women. One of the objectives is to support policies for women that provide equal opportunity in education, employment and retirement. We believe that the social and economic problems of women today should be resolved by taking into consideration their impact not only on the woman but also on the family and society as a whole.
Thank you for this opportunity to appear before this committee today.
We are pleased that as stated in clause 1(e) of Bill 19, one of the objectives of this bill as set out is to ensure that supportive family members have a role when a person lacks the capacity to make his or her own medical decisions.
Unfortunately, however, it would appear that this legislation does not, in several important respects, provide this role for the family. In particular, we refer to the failure to include in the legislation a role for parents in their children's medical treatment and in regard to applications to the Consent and Capacity Board.
Our association is shocked that Bill 19 fails to provide an age at which a child would be presumed not to have the capacity to make a decision in regard to health care. This omission is destructive to the family unit as well as to the wellbeing of the child.
Subsection 3(2): "A person is presumed to be capable with respect to treatment, admission to a care facility and a personal assistance plan." Section 9 gives the health practitioner the right to treatment.
It is clear from these two sections that the health practitioner has the sole authority to determine whether anyone, including a child of any age, has the capacity to give consent for medical treatment. This is an unbelievably wide power given to health practitioners, who, according to the definition in section 2, include chiropractors, masseurs and naturopaths and who may be complete strangers to the child. Treatment is defined in section 2 to include "therapeutic" and "preventive" services. The health practitioner may also determine the child's capacity to consent for cosmetic services.
In the second paragraph on page 4, we note that the failure to provide a cutoff age for a child's consent creates the absolute absurdity in practice of a parent's consent being required to permit that child to participate in a field trip at school but not for major surgery. The age of 16 is required for driving a car, voting; the purchase of cigarettes and alcohol requires adolescents to be 18 or 19. Why then the exception in medical treatment -- the decision in this regard having long-range ramifications throughout the child's life.
Failure to provide a role for parents in the child's medical treatment appears to be inconsistent with other parts of the bill. Several sections mention 16 years of age -- sections 18, 19, 22, 31 -- in various situations.
Common sense indicates that children do not have the same experience or decision-making skills as adults. They are frequently not aware of the family medical history or the risk elements involved. Procedures such as those operating abortion clinics, who after all are in the business of making profit -- this refers to health care practitioners -- it is certainly in their financial interest to find such minors capable to make such a decision. It is particularly disturbing that abortion entrepreneurs have this decision-making power, considering the fact that teenagers, particularly young ones, are subject to greater risks in abortion procedures than older women, and we give a source for that.
Parents have known a child for his or her entire lifetime and, in most cases, display a superior protective instinct commonly understood to flow naturally from the parent-child relationship itself.
On page 6, we mention that it should be pointed out that the Ontario Association of Children's Aid Societies protested the radical change in philosophy apparent in the bill's predecessor, the Consent to Treatment Act, which also included a bias in favour of a child's emancipation over the rights of the parents. I'll quote from that statement:
"We...feel the need to point out that the Consent to Treatment Act makes radical changes to provincial legislation and policy with reference to all families and in particular the responsibilities of all parents in Ontario.... We strongly object to the failure of this legislation to respect...the legitimate and necessary role of parents in the first instance with respect to supporting the medical needs of their children."
So this is what we see happening: again, increased power on the part of the health practitioner.
Parents are placed in a difficult position. They have under this bill the onus of law of proving that the child is not capable of understanding proposed treatment. Since they were not present at the consultation by the health practitioner, parents are therefore put at a distinct disadvantage. On the other hand, if the bill included a presumption of incapacity for all those children under 16, this would reverse the onus, putting it back in the hands of the health provider who wishes to provide such treatment.
Moreover, the parent is doubly disadvantaged in Bill 19 by the fact that section 27 of the bill provides that the health practitioner need only declare that he "believes, on reasonable grounds and in good faith," that the minor child has the capacity to give consent and he is then given full protection from liability. The parent therefore is not even provided with an opportunity to legally challenge the health provider's decision. That is, under this bill the health practitioner has full protection and the parent of a minor child has none at all. This is indeed a travesty of due process, not only for the family, but for the child and society as well. It constitutes an injustice so grave that it undermines the entire credibility of the bill.
The unconstitutionality of Bill 19 as to a minor's capacity: We refer you to a case in the Supreme Court in January 1995 stating that the court concluded that the rights of parents, including that of deciding medical and other treatments, are a fundamental aspect of freedom of religion guaranteed by section 2(a) of the Charter of Rights. I'll read off Mr Justice La Forest's statements:
"Although [in Canada, a parent's] liberty interest is not a parent right tantamount to a right of property in children, our society is far from having repudiated the privileged role parents exercise in the upbringing of their children. This role translates into a protected sphere of parental decision-making which is rooted in the presumption that parents should make important decision affecting their children because parents are more likely to appreciate the best interests of their children and because the state is ill equipped to make such decisions itself.... I would have thought it plain that the right to nurture a child, to care for its development, and to make decisions for it in fundamental matters such as medical care, are part of the liberty interest of a parent."
Not only is the failure to provide a cutoff age for a child's consent wrong in policy, but it would appear to be wrong in law, as well.
The family is excluded from application to Consent and Capacity Board. In subsection 9(1) the health practitioner is given the singular responsibility of determining whether an individual has the capacity to give her or her consent. It's a departure from the previous Consent to Treatment Act. This does not provide sufficient protection for a child or an adult from a health practitioner's possible bias in support of withholding treatment owing to economic considerations, or perhaps a bias in support of birth control or abortions for minors, even though they may be directly contrary to the family's values and religious beliefs. This can only lead to disharmony and heartache for the family.
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Regrettably, as stated previously, there is no way a family member can appeal any decision of a health care practitioner. The individual and the health practitioner have as a right the authority to be a party to the application. The family may participate, however, only if the board so specifies under subsection 30(3) of the bill. Who then is to be the spokesperson for the vulnerable person? Surely the family, who know and understand the background of that individual and who would be most personally affected by any decision of the board, should have as a right the choice to participate in the hearings. The same argument applies as well to the provision of section 32 of the bill in regard to an application in regard to a person's admission to a hospital. Sections 34, 48 and 63 also fail to provide for the family in applications to the board.
Finally, this failure to include the family in the appeal process would appear to be in direct conflict with clause 1(e) of the bill, which provides as follows:
"1. The purposes of this act are...
"(e) to ensure a significant role for supportive family members when a person lacks the capacity to make a decision about a treatment, admission to a care facility or a personal assistance plan...."
Consent of "partner" in giving consent: Our association has some concerns about paragraph 4 of section 18, which provides that a partner may give a substitute consent for an incapable person's treatment. Partners are defined in subsection 18(9) as two persons who "have lived together for at least one year and have a close personal relationship that is of primary importance in both persons' lives." This section does not provide that these partners be of the opposite sex.
Our concern lies in the fact that this "partner," a relationship consisting of an association of only a minimum of one year, takes precedence over subsection 18(3), over all family members. This would appear to be an unduly harsh provision in that it excludes the family from a very sensitive and crucial decision and gives a partner the total decision-making authority. At the very least, this proposed legislation should require that a family member be notified and consulted in regard to the decision if a family member is available.
The "best interests" doctrine: It is noted that section 34 provides that the substitute decision-maker may apply to the Consent and Capacity Board if he or she wishes to depart from the patient's wishes to refuse treatment. However, there should always be a bias in support of life and dignity backed by life-sustaining treatment. Accordingly, the onus should be placed on those who wish to refuse treatment, and they should be required to apply to the board for any departure from necessary treatment. The "best interests" principle in section 19 should include an onus in support of treatment. Support of treatment should be the standard, and those who wish to withdraw treatment would then have a responsibility to establish that treatment should be withdrawn. So it should be the reverse of the situation.
Our concern about this arises from documented cases in the US such as the famous Nancy Cruzon case, where a substitute decision-maker suddenly and conveniently found flimsy evidence to establish the wishes of the patient that food and water be withdrawn because it was supposedly in the best interests. The result, of course, was the death of Nancy Cruzon.
In summary, although one of the objectives of Bill 19 is to better promote the role of the family in the treatment of mentally incapable persons, unfortunately, the proposed legislation has failed to do so in two critical areas. These are a minor child's consent and the participation in application to the Consent and Capacity Board by a family member.
Therefore, our overall criticism of the bill is in regard to the unfettered discretion given to health practitioners. We believe the bill gives far too much credibility to health practitioners' decision-making objectivity in deciding a vulnerable person's capacity. Although health practitioners may achieve the technical and professional skills required by their professional associations, this does not automatically confer upon them moral and/or philosophical insights necessary to deal with the issues before them. Health practitioners, just like everyone else, are subject to their own particular biases. It is very important, therefore, that there be checks and balances in the proposed legislation to curb excesses of the authority accorded to health practitioners. This can only be achieved by providing the family with a decision-making role. Without this provision, the bill fails in one of its major objectives.
Now I'll repeat the recommendations:
(1) The age of consent for minors should be set at 16 years of age.
(2) Families are to participate as a right in all applications to the Consent and Capacity Board, not just at the discretion of the board or the health care practitioner.
(3) When a "partner's" substitute consent is given, there should be a requirement that the incapable person's family be notified and consulted.
(4) The "best interests" of an incapable person should include a presumption in support of treatment and an application to the Consent and Capacity Board should be required before any withdrawal of treatment occurs.
The Chair: Thank you very much. Each caucus has only one minute left. Mrs Johns.
Mrs Johns: I just wanted to talk about the age, and I know we don't have much time. The Hospital for Sick Children was in last week to talk to us and basically said they believed children were on a scale that changed as they aged, ie, that they were able to make more decisions as their age grew and their understanding grew.
The health practitioner at this particular point has to look at a child or anybody and decide if they are able to understand the treatment and also, on top of that, if they are able to see the reasonable, foreseen circumstances if they do or they don't take the treatment.
From that standpoint, when you're talking about families always being involved and the age always being 16, what do we do with kids who live on the street, kids who won't talk to their parents and who badly need treatment? What do we do with those kinds of people who would slip through the cracks under your system?
Ms Watts: Well, we make an exception for those --
The Chair: I'm sorry, the time is up. Very sorry, ma'am. That's the way it works. We're limited as to time. Mr Ramsay.
Mr Ramsay: Again, on age of consent, I just want to say as the father of two grown daughters that I believe kids grow up too quickly today and I wish they didn't. It's such a precious time of life and it's the only one time we have that time of our life and then we're adults. But it does happen, and the reality is that many children, from all walks of life, become sexually active very early.
If I had a daughter who was afraid to come to us and say that this is her situation and maybe afraid to go to a doctor because she suspects she has a sexually transmitted disease, I wouldn't want any impediment in law to be placed before her to go and seek that treatment because she's afraid that it might be reported back to me. And even though I wish the whole situation wasn't there, that maybe is the situation. That's why I support the government on this, that it remain open.
The Chair: Thank you, Mr Ramsay. Mr Marchese.
Mr Marchese: I understand your concern, of course, around number 3, "When a `partner's' substitute consent is given, there should be a requirement that the incapable person's family be notified and consulted."
I am one of those who supported the rights for gays and lesbians, and many of them have talked about the problems they have with some of their family members who have rejected who they are. They say, "We'd rather be taken care of by our partners or friends that we have been with for a long time than to be taken care of by parents who obviously rejected who we were and who we are." So they have strong concerns about inviting family members who may be distant now, whom they haven't seen for a long time, making decisions on their behalf, which they worry about.
Ms Watts: Well, in all three cases we're assuming that the family is incompetent and doesn't really care about the person involved, and in all three cases the family is put in an inferior position, whereas the family has taken care of this person for many years, and quite often when things fall apart, the person involved comes back to the family and the family has to deal with the negative consequences of the situation if the law does not protect the family interests, and most families are concerned about the interests of their children.
The Chair: Thank you for taking the trouble to come today with your presentation. We appreciate it.
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OTTAWA GENERAL HOSPITAL
The Chair: Next is Ottawa General Hospital, Ms Davis, vice-president, medical affairs. Welcome.
Ms Marie-Adèle Davis: Thank you. Good morning. Although I am here today as the acting vice-president of medical affairs of the Ottawa General Hospital, this presentation has been constructed in consultation with a number of the other hospitals here in the Ottawa area.
Firstly, we would like to congratulate the Ontario government on taking the initiative to change the Consent to Treatment Act and the Advocacy Act. These two laws often left our health care professionals facing needless delays in administering care to patients and being subject to an overbureaucratic and complicated system to protect patients' rights. Please remember that all my remarks today are based on the principle that hospitals want to care for people in as appropriate and timely a manner as possible while completely respecting the rights and the wishes of their patients. It is appreciated that the new Health Care Consent Act has addressed many of the most objectionable parts of the consent-to-treatment legislation, and on the whole we are pleased with the direction it has taken. Given the short time available today, I will, therefore, concentrate my remarks on our concerns with the new act.
Rights advice: While we applaud the repealing of the Advocacy Act, we are concerned that there is no mechanism in the Health Care Consent Act to advise patients that they've been found incapable and how they can appeal the finding of incapacity. Further, there is no indication of how an application to the Consent and Capacity Board is to be made and who will represent the patient in this process.
The reality is that individuals who disagree with the health care professional's finding will choose to appeal to the board, and therefore there must be a clear and simple procedure to do so. Perhaps this is to be addressed in the regulations. The staff of institutions would be pleased to assist in streamlining this process to ensure that patients receive care without needless delays. As well, tools to document the finding of incapacity must be available at the provincial level for ongoing treatment decisions and any legal purposes.
The Consent and Capacity Board: We continue to feel that the board poses a number of problems for both the health care professionals and patients whom they serve.
Firstly, the new act allows for a board of one person. While we can appreciate that such a format will save money and difficulty in establishing boards, we are worried that a single non-health professional will not be able to fully understand the intricacies and subtleties of incapacity.
Secondly, the new act, while allowing the board to assist families in naming representatives and ensuring that the best interests of patients are protected, continues to allow the patient to object. This assumes that the incapable person will be capable of understanding what a substitute decision-maker representative is and the role of the person. This is not always the case. This section needs review and changes to protect the rights of the patient and the families in making important choices.
Lastly is the fact that the new act does not totally eliminate the potential for delay in providing treatment or admission to a care facility. The time lines in the new act need to be carefully re-examined to see if the time for application to the board can be shortened.
Substitute decision-makers: The hierarchy of substitute decision-makers was one of the most positive aspects of the Consent to Treatment Act. It is appreciated that it has been retained and clarified. However, there are three points which we would like to highlight.
First, the validated power of attorney no longer appears in the substitute decision-makers list. While the process to be named a validated power of attorney was found expensive by most families, it was less complicated than guardianship when such a type of substitute decision-maker was needed. Therefore, we encourage that the validation process be reviewed, with an emphasis on lowering the costs of capacity assessment.
The second point in relation to the substitute decision-maker is the use of the public guardian and trustee as a last resort. In the acute care setting, decisions on certain treatment issues are needed in the shortest time possible. Experience to date has proved frustrating to the caregivers when a timely decision is needed. It is also felt that the PGT case managers need further formal training to deal with the more complicated treatment decisions such as withdrawal of treatment. As well, the role of the PGT in the placement of patients must be expedited to ensure speedy access to appropriate long-term placement once this decision is reached.
Finally, in the section on capacity, we question why a health care practitioner who is aware that an incapable person is making an application to the board to have a representative named cannot begin treatment if the person to be named representative is willing, available and there are no objections.
Treatment and plans of treatment: The changes to the definition of treatment are welcome, as is the flexibility given with the potential to alter a plan of treatment. There will, however, be questions raised by health care professionals as to what constitutes a significant difference to the nature, expected benefits, material risks and material side-effects of the change in treatment compared to the original treatment. The clauses of the Health Care Consent Act with respect to emergency treatment are clearer and more functional than the Consent to Treatment Act.
Evaluators: The role of these individuals in conjunction with the capacity assessors is unclear. What training will evaluators be given to ensure continuity and consistency? Further clarification is needed as to the criteria which will be used by these individuals to judge capacity. As well, it would seem that the role of evaluator would be suited to social workers.
Finally, thought must be given to how assessments and evaluations will be carried out in smaller towns that do not necessarily have the range of health care professionals that a larger town or city might have. Vulnerable individuals are most comfortable in familiar surroundings and this would lead to the fairest evaluations. We often have people brought in from smaller communities to our hospital to have these evaluations done.
Protection from liability: The institutions at which health care professionals are employed or have privileges should be given the same protection from liability as its professionals.
Implementation of the Health Care Consent Act: Thought and time must be given to allow proper implementation of the new law. Health care professionals and their institutions should be provided with practical guidelines to follow to ensure that the new act is initiated with consistency across Ontario. Time is also needed to educate those who will be using the new law, as this will lead to maximum compliance and protection of patients' rights. Finally, any new forms associated with the Health Care Consent Act must be available before the act is implemented, for educational purposes. This was a major problem for us with the implementation of the consent-to-treatment legislation.
Education of the public: If Ontarians are to get the full benefit of the Health Care Consent Act, then there is a tremendous need for public education. There is appropriate emphasis given to advance directives. However, the majority of people are unaware of how to indicate their wishes to make them the most useful for the substitute decision-makers and the health care professionals. Information should be given to citizens that advance directives are most appropriately discussed with a health care professional and one's power of attorney for personal care and do not necessarily need legal input. As well, public information about the rights of people with respect to treatment and placement decisions must be widely available in an understandable format.
Research: Although incapable persons may not be capable of consenting to research, they should not be excluded from research which is designed to bring insight into the disease from which they suffer. The decision to consent to research should be made by the substitute decision-maker, using the principles of the Health Care Consent Act.
Thank you for providing me the opportunity to address you today on behalf of some of the local hospitals. We trust that the views of a group of large health care providers will prove helpful.
The Vice-Chair (Mr Ron Johnson): Thank you, Ms Davis. We want to move now to some questions. We've got about four minutes per caucus, and we'll start with the Liberal caucus.
Mrs Caplan: Thank you very much. It was an excellent presentation, and you've identified a number of issues which we've heard repeatedly, the first one as far as the obligation. I want to be very clear that you support a statement in the statute that would give an obligation to those providers, professionals, who will be deeming a patient incapable of making a treatment decision?
Ms Davis: Yes. What we want to stay away from is reading the statement that was there under the Consent to Treatment Act. It was complicated, it was very long, and if they read it verbatim, I'm not sure the patient actually was made aware of their rights. That's what we want to get away from, but they do need to be told.
Mrs Caplan: I agree that the Mirandizing of the former legislation was not fostering the kind of communication that would see that a patient truly was given the opportunity to understand. We know there are some who clearly are comatose and not in a position to understand, but there are a whole lot who I think would benefit.
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I also think it would foster better communication with the professionals, so we've been arguing that there should be something in the statute that requires the obligation. Would you be comfortable with allowing the professional colleges to establish the guidelines or the protocols for how that would be achieved, where there is a professional college?
Ms Davis: Yes, we would be, as long as there is consistency. In an institution such as our own, we have a member of almost every one of the regulated health professions, and then social workers and others who are not yet members, so we need to have a consistent message across our institution.
Mrs Caplan: That's a really good point. I also agree with you that social workers should be included, and that while they don't have legislation and a self-governing college, if they're going to be included, you have to have something in the statute.
I'm not sure I agree with the concerns you express around the validated power of attorney, and I wish we had more time to go into that. That concept was seen as confusing, that people just didn't understand, and that where there was a need for guardianship, statutory guardianship is possible. I know these are difficult concepts.
Ms Davis: What we did find with the families who chose to go with a validated power of attorney, who felt that a full-time substitute decision-maker was easier and preferable for them, was that having the person assessed by two capacity assessors and then filing that with the public guardian and trustee was less complicated than going the legal route.
Mrs Boyd: Thank you very much for your presentation, and it is helpful. I'm very pleased to see again a representation from the health care facilities that the patient must be informed of incapacity. We certainly realize that the experience people have had with the form as it was, was not sufficient. It's good that we have an opportunity to hear that the principle is good but the method wasn't and we need to find a new method.
I have reason to know that your hospital is very careful about explaining treatment to patients and asking for consent for various things, so I really take very seriously the commitment you have to that. My criticism around the research aspect -- I wouldn't want to be misunderstood, but I always have concern about research issues and how research issues intersect with treatment issues, particularly knowing that we often don't know about the course of diseases and we often have to find out through research how that goes on. But the thought of doing that with incapable people worries me. We have the particular example in this act of the withdrawal of the prohibition on faradaic stimulation, for example, an issue which involves both research and treatment. I wonder if you'd like to comment on that.
Ms Davis: One of our concerns is that for a certain population, they will never be capable to consent to research; for example, the population that comes in from a traumatic accident, and we want to do research in trauma. Without being able to advance and do that research, we'll never be able to afford the medicine that might help other people who may be injured in an accident. Or with the Alzheimer population, the persons themselves may never regain the capacity to consent to research, but some of the research that might be done will bring further insight for future people who may suffer from that condition.
Mr Marchese: I agree with you with respect to the implementation of the Health Care Consent Act, the need to educate those who will be using the new law as a way to lead to maximum compliance and protection of people's rights. I think we make a mistake as governments, all governments, in terms of how we implement those new laws and the time we allow and the education that should be allowed to do that, including the education for the public. We never do that as governments; hopefully, we will learn in time, as people tell us to do that over and over again.
With respect to the Consent and Capacity Board, you say the new act allows for only one board member. You're not the only person saying there should be more than one person doing it, because to leave the decision to one person to make that assessment is a scary thought for the person who is the victim of incapacity. Many people support that view.
With respect to treatment and plans of treatment, you're right, many people are worried about the variation of treatment: What does that mean and what does that imply to patients, and can we entrust the health care person to always do the right thing? Many people are concerned about that.
Mr Klees: Thank you very much for your report -- very concise and very helpful. I'd just like to make a clarification with regard to your comments about the validated power of attorney. In your proposal, you rightfully say that the validation process under the SDA was a very expensive one. I want to assure you, though, that the power of attorney is still there and is ranked second, as it was under the SDA. The only difference is that we're not calling it a validated power of attorney, but it has the same function. We've simply removed the validation requirement, which will streamline the process --
Ms Davis: I understand there were the two types of power of attorney under the consent to treatment law, both the validated power of attorney and the power of attorney. I was speaking of the validated power of attorney in those cases where people have been found to be permanently incapable and therefore need a permanent substitute decision-maker, as opposed to the power of attorney which comes into effect once a person becomes incapable and then would go out of effect once that person regains capacity.
Mr Klees: Okay. I think our intent with regard to the power of attorney is that it would have the same effect as the previous validated power of attorney, without the necessary requirement for the expensive validation process.
Mrs Johns: I just want to draw your attention to -- you're talking about the Consent and Capacity Board. The reason we're doing it is the timing factor. I don't know if you were here earlier when we talked about it.
I'd also draw your attention to 71(2)(c), which says these people have to have experience that in the opinion of the chair is relevant to adjudicating capacity. So we're not talking about a person who has never been involved in the process before. They have to be a lawyer; they have to have been involved in the process before; they have to have been on the board for two years. There's some substantial requirements for this person; it's not a person we drag off the street.
Ms Davis: I understand that, but what we have found, albeit in just about a year of the implementation of the Consent to Treatment Act, is that almost every one of our boards has been different. There have been different issues, different subtleties around, and it's not necessarily only the psychiatric population but the population made incapable because of disease or age. We feel that the experience and judgement of a health care practitioner might be important on those boards.
The Vice-Chair: Ms Davis, on behalf of the committee, I thank you for your presentation.
Mrs Johns: Can I make a point of clarification while the next person is coming up? Mrs Caplan talked about social workers. I think she knows -- I just want to make sure -- that they haven't been set up as a college yet, so we can't include them in that section. But if they were to be made a college, the last subsection in that section says we could set up a regulation that would allow us to put them into that section.
Mrs Caplan: However, if in the statute you have a statement that obliges all providers to communicate finding of incapacity and inform them of their right of appeal, if social workers are in that category it would be automatic; you wouldn't have to worry about doing it by reg. That would cover everybody. The other thing is that they're doing it now -- we can discuss this further in clause-by-clause -- so you've got to find some vehicle, outside of waiting for legislation, to allow them to continue doing what they're already doing.
The Vice-Chair: We're going to have to stop you there and proceed with the next presentation.
CENTRETOWN COMMUNITY HEALTH CENTRE SUPPORT GROUP
The Vice-Chair: We now have the Centretown Community Health Centre.
Wilderness: My name is Wilderness. I'm one of the survivors of abuse, so I am part of the vulnerable population, but I'm here on behalf of a group of users of mental health services, family members and friends of users of mental health services. We met through a program at Centretown Community Health Centre. For two years or more, we have been following closely provincial government proposals and policies that affect the mental health system and the people in our community who use it. Some of us are on the district health council mental health board. Many of us are involved with other consumer, family and community groups, as well as being survivors ourselves.
We are all angry and very frustrated with this government's decision to repeal the Advocacy Act. We want you to know that getting rid of the Advocacy Act is not hurting the NDP; it is hurting the voters who asked for it. The Advocacy Act did not come from a political party. It came from the people.
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After many years of consultation, we finally got government support for advocacy, and now the new government is starting the process all over again. We are tired of having to start from point zero, tired of having to educate yet another bunch of politicians. The government should be continuing what the people asked for.
This government is concerned with cutting government spending, so why spend more money on having another consultation on something that voters have already asked for? If, on the other hand, you are serious about doing something about advocacy, why do you need to consult us again? There's already a lot of material from the consultation on advocacy that happened during the last government's term of office that's available for your information. This group sees this as another way of wasting taxpayers' dollars by unnecessary repetition.
Advocacy is a basic thing. It's a lot easier to make a decision to trash the act when you're not the one who has to live with it, but I'm the one who's going to have to live with the decision you make. A lot of people in this community are the ones who are going to have to live with the decision you make. It might be a lot easier for you to make that decision because you're not the one who's in the vulnerable situation.
This government is putting a lot more people in a vulnerable situation and making vulnerable people a lot more vulnerable than any other government has done before. We definitely need the Advocacy Act a lot more than we ever needed it. This is something the voters and people have been requesting for at least 15 to 20 years. We're still waiting for a long time to have this, and just when we're finally starting to have it, it's being taken away.
From an economic point of view, as a survivor myself and in the group as well, we have not found it economical to not provide our rights. When our rights are not being respected, that causes a lot more stress, and when we are much more stressed it makes it even harder to work, so we end up on welfare or disability, and taxpayers have to spend a lot more money that way. Also, we end up with more medical problems as a result of the increased stress from not having our rights respected. It's very tough to try to fight to have these rights respected -- very, very tough. I'm doing it myself, and a lot of members in this group are doing it themselves and finding it very tough. It's more money, because we end up being on disability for a lot longer than we need to.
There's an example of a mother. One of the members is a mother of someone who has been in and out of crisis for 20 years. This mother has been unable to work. Every time she tried to work, her child's crisis interrupted. Eventually, she felt she was too unreliable, that it was not reasonable to expect employers to put up with her sudden departures and emergency calls, so she stopped trying to work and she probably got on welfare or something. As she got older, it became harder for her to find work when she did try, so she has been an economically unproductive member of society for 20 years.
This woman feels that if her child had had the support of an advocate she, the mother, would not have been alone in the role of support of her child. The mother's life would have been much more stable and she could have continued to work. It's much more expensive not to provide advocacy support because then people can't work for a much longer time.
It's not unusual for survivors of a dysfunctional family and an abusive family to find themselves in a situation where the family tries to get you declared incompetent just as an extension of the abuse.
There's somebody in the group who said she was depressed to the point that she didn't care about anything, so she signed a consent-to-treatment form. She thought it was part of entrance information about hospitals. They did not mention anything about what the forms were. They did not explain what it was and the next day they came to give her electroshock. She didn't want it, but nobody had explained to her that she had the right to say, "I didn't know what I was signing." They asked her to sign that when she was at her most vulnerable time, which is not a good time to ask somebody to make decisions, usually. They did not explain to her what she was signing either. Fortunately, she had somebody she could phone to get advice, but that meant a long-distance call. But not everybody has someone they can call who can be impartial to help them make the right decision for themselves. She was able to get out of it, but it was a close call. Had it been explained to her what she was signing, she would have refused.
There are a lot of people who have clearly resisted electroshock and were forced to take it anyway. When you're vulnerable, it's hard to make decisions, so you need to have somebody, an impartial advocate, who can be there to help make sure that the form is explained correctly and in a way that you can understand.
Mr Harry Drury: Hello. I'm Harry Drury. Traditionally, the court system is a place where vulnerable people have been dealt with. Courts are for deciding what is good and what is bad, who's right, who's wrong, who will win and who will lose. The adversarial relationship doesn't have anything to do with people in the community needing help. It seems to me that it's sort of the white hats and the black hats, the old TV, the old movie stuff; when there's somebody who cannot express what their situation is, the courts traditionally have been there to try to help, but that is not their fundamental function, it seems to me. Advocates are knowledgeable people who can bridge the gap between people needing help in the huge system. They can say: "What do you want? Can we negotiate? Can we figure something out?" They can try to find a solution that both parties can live with instead of a win-lose situation. Advocacy makes more sense.
Here's a story from one of our members. That's me -- Harry. I fell down and hurt my shoulder. I was all strapped up. It was mid-February and there was lots of ice around. I had to go to pick up my disability cheque. This was before the computerized deposit system. It was reasonably difficult and dangerous. The somewhat disinterested staff didn't understand why I couldn't get there, since both my legs worked just fine. They would not modify the way they did things just for a month. Their attitude was: "It's here. Come and get it. Give us proof. Don't give us the truth. We didn't do anything wrong. You are just paranoid."
I'd like to just pick up on that proof thing. How do you get it across to people, when you don't particularly have anything to show, that you're just saying the truth, trying to cope against this whole notion of, "Oh, we've got somebody else here who's bending the truth and trying to rip off the system somehow"? It's a real issue for me. I don't have the proof.
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My experience has been that if someone with an official title or an authoritative manner calls on my behalf when I'm in this kind of situation, they get what I need. That's why we need advocacy. This touches on the whole communication situation. People you run across, some of these stories, they're not really able to get the situation across, telling anybody, and in this kind of a situation I'll say it's somewhat intimidating. Somehow I'm able to put myself in front of a group of people and try to get something out. It is very puzzling to me that the whole notion of -- boy, time sure goes by, doesn't it? I guess I should wind things up.
To have someone just step forward, rather than going through the whole court system and the official people and experts and one thing and another which traditionally has made sense and I guess is my bias -- here we are in the mid-1990s somewhere and things have changed. Things have changed and the old way maybe should be modified.
I think that's about what I have to say.
Mr Marchese: We want to thank you for your presentation. It's people like yourselves we need to hear from when we talk about the changes that have been made here. One of the things that people have talked about is the retaining of the Advocacy Act. What both of you talked about is the need to have people who are there, advocates there to support you, rights advisers who are there to support you, because it's very difficult on your own at times to be able to deal with problems or solve problems. In getting rid of these people, the rights advisers and the Advocacy Commission, who helped people like yourselves, you'll find more and more people alone again out there, trying to cope and trying to deal with difficult personal problems. We thank you for your presentation because we need to hear those things, and I think the government members particularly need to hear the concerns you've raised.
Wilderness: The main problem I have is being revictimized and having my rights not respected. That's the number one problem I have.
Mrs Boyd: I'd like to thank you as well. You've told a number of stories, some your own and some of those in your group. I think one of the points that you made was the frequency with which people who are survivors in fact are survivors of abuse within the family, and therefore the need they have for advocacy outside the family. While that is not something the general public wants to hear -- we'd like to believe that all families are supportive and caring -- the reality for people like you is that that's not the case. It's important for us to hear in your own words that this is not the case again and again.
Mr Klees: Thank you very much for your presentation -- very much appreciated. I'd like to take this opportunity to clarify something for you. I want you to be assured that the repeal of the Advocacy Act does not mean the repeal of advocacy in the province. What it means is that we're going to be doing away with a commission and with a system that would cost $18 million a year. I think those you represent understand that's a lot of money that we can't afford to simply continue to put into a bureaucracy. What we want to do is ensure that your rights are protected, that you have the kind of support you deserve, but we want to do it in an efficient way so that we can provide more people with advocacy support in this province. That's our commitment to you and that's what we're going to achieve here.
Wilderness: Traditionally, I have found that it's more expensive not to provide advocacy because then I end up -- I could be back in school right now if it wasn't for all the time that my rights were not respected and all the fight I have to put up. But I can't work and I can't go back to school as a result of that, so it becomes more expensive to taxpayers not to provide advocacy.
Mr Klees: We do intend to provide advocacy. We just don't believe it's appropriate to provide it in the expensive way that the previous act was providing it. I want to give you that assurance.
Mr Clement: I wanted to take a different tack and say, in the 30 seconds I do have -- Ms Boyd talked about survivors of family abuse, but there are survivors as well of institutional abuse. Institutions wreck people's lives. Governments wreck people's lives. We, on this side, from a moral perspective, don't see more government advocates, more government inspectors necessarily being the solution. That can add to the problems rather than subtract from the problems. We want friends and family who care about and love the vulnerable person to have more of a say. That's where we're coming from.
Wilderness: I want the survivors to be the ones who decide for themselves.
Mr Clement: Quite right.
Mrs Caplan: If the government means the words that we're hearing, I'm hopeful that it will accept some amendments to this legislation. It's clear that they're planning to scrap the Advocacy Act. They're not going to go back on that, but I believe there are some changes that could be made under the existing legislation, the remaining consent to treatment and the substitute decision legislation, that could put in place some of those safeguards -- not all, but some. For example, if there is a statutory obligation of providers to inform people when they have been found incapable, I think that is one protection. It would also be a requirement to inform them of their right to appeal. That's something that's missing from this.
But there's another one, and I hope the government will listen, because this is a response to your concern. The Psychiatric Patient Advocate Office has a very good reputation. They, right now, only have a mandate in the provincial psychiatric hospitals. Rather than allowing a hospital administrator to appoint an advocate who might be a chaplain, as proposed by Mrs Johns, I would be far more comfortable, and I think many in your community would be more comfortable -- this is my question: Would you be more comfortable if this act specified an increase in the mandate for the provincial psychiatric advocacy office to include all of the community hospitals that provide psychiatric programs as well as community-based programs where there may be a need for an advocate from time to time, or someone to offer assistance, as they have been doing in psychiatric hospitals?
Wilderness: I think what we would be more comfortable with is that advocates would really be impartial to hospitals and not connected with professionals and also be survivors themselves.
Mrs Caplan: That's the experience of the PPAO. They are independent and they're impartial and I know they are well respected by the people they have been serving in the provincial hospitals. It's not a perfect solution, but it's an alternative.
The other proposal: Right now this legislation talks about psychiatric facilities. I'm going to propose an amendment that will change the word "facility" to "program," because it's not the bricks and mortar. There are many community-based programs, and that's the whole thrust in community mental health. That change would also ensure people's rights whether they were in a facility or in a program, and I think that's the sort of thing you want.
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Wilderness: Not all survivors are dealing with hospitals and stuff. Like, I'm trying to heal my childhood abuse for many years now. I'm trying to do that without having to be sucked into psychiatry, because I don't have a mental illness; I just simply have been abused. So I shouldn't have to deal with hospitals. I do need support, but outside of that. I'm finding it extremely difficult to be able to do that; in fact, almost impossible, because I'm not having the support that I need to do that outside of it.
A lot of the times when my rights are not being respected is within the government. Like compensation for victims of crime, I'm having problems with that. In regard to having counselling that's not psychiatrically related, like a social worker, it's not covered. So those kinds of things are also a problem. There's revictimization outside of psychiatry as well. So this is another concern that I have, that it be broad enough to cover anything, anywhere where your rights are not being respected.
Mrs Caplan: I'm not sure you're going to accomplish that, but thank you for an excellent presentation.
The Chair: Thank you for your presentation and assisting the committee today.
KENNETH SMITH
The Chair: Mr Kenneth Smith, the Lanark County Law Association.
Mr Kenneth Smith: I expect to be fairly brief. I appreciate the opportunity to appear before the committee. I come as a lawyer who has been in private practice in the town of Perth for 17 years. I'm a member of the Canadian Bar Association and of the Lanark County Law Association. I think, having canvassed my local colleagues, the views that I will be expressing in this presentation fairly well represent those of my profession, at least in the local area of Lanark county.
I'm going to confine my remarks to the Advocacy Act, the repeal of that act and to the amendments to the Substitute Decisions Act. Certainly, I find most welcome the promised repeal of the Advocacy Act. I believe it created a new level of bureaucracy in the person of the Advocacy Commission, and it seems to me that the commission was highly intrusive into the lives and financial and property affairs of people in a most extensive fashion, all in the name of protecting vulnerable persons.
I was most especially disturbed that the act required that in each and every instance where a person was certified incompetent pursuant to a properly conducted assessment, an advocate would have to immediately be dispatched. That advocate would have to meet promptly with the individual so assessed to counsel that person to the effect that he or she did not have to abide by the power of attorney arrangements that they had made perhaps some years earlier when competent to do so. It has always seemed to me quite unimaginable that a government bureaucrat should be counselling a person assessed by two assessors as incompetent to try to proceed to undo arrangements that they had put into place when they had been competent to do so.
This situation applied both to powers of attorney for property and those for personal care. In each case where an advocate intruded, it would be necessary for the attorney named in the document to make a court application to be appointed either guardian of property or of the person. The result of this process is a significant expenditure of both time and money, all as a result, I believe, of a legislative provision whereby a government bureaucrat would encourage an incompetent person to undo arrangements that they had earlier made.
So I respectfully submit to the members of this committee that the Advocacy Act would have been highly intrusive, resulting unnecessarily in complications and expenditures of time and money. I believe it was an ill-conceived legislative endeavour, and I believe its repeal by Bill 19 is to be applauded.
As to the Substitute Decisions Act, I am certainly pleased that the amendments proposed by Bill 19 make it clear that the public guardian and trustee is only to be involved as a very last resort. Under the present legislation as it now stands, when a certificate of incompetency is issued, the public guardian and trustee automatically becomes statutory guardian of that incompetent person, despite the fact that a power of attorney had previously been signed and had not been revoked. The person named in the power of attorney would then have to apply to displace the public guardian and trustee as the individual's guardian of property. So the public guardian and trustee was, I believe, in the existing legislation put in the intrusive position of deciding whether the power of attorney arrangements made by the individual, when competent, should in fact be allowed to be implemented.
Just as in the advocacy provisions mentioned earlier, I believe this to be a matter of government setting up a system to judge whether or not arrangements effected by a person, when competent, are in fact in that person's best interests. I cannot accept, and I do not think the average person in Ontario accepts, that the province knows better what is best for the individual. I believe the provisions of Bill 19 as proposed effectively redress these problems in the existing legislation.
There are, I believe, some areas where the thrust of Bill 19 could perhaps be more effective. By virtue of section 32 of the existing act, it is the duty of a guardian of property to consult "supportive family members and friends" of the incapable person in the decision-making process. I believe this presumes far too much about family relationships, which in some instances can be strained. For example, a person might have several children and might have complete confidence in two of those children while perhaps others have problem characteristics. Accordingly, the parent executes a power of attorney in favour of those two individuals, those two children whom they trust implicitly. Those two children might be very greatly hampered in carrying out their duties as attorney for property if they have to consult with the others, who may be wayward or have characteristics making it inappropriate to consult.
So I believe perhaps you have once again a situation where the legislation could be improved by considering the removal of the consultation requirements of section 32 or, alternatively, the addition of a provision to the legislation whereby a person can include in their power of attorney a clause removing the duties of consultation.
I am concerned that Bill 19 appears to propose to remove the requirement of an affidavit of subscribing witnesses attesting to the belief that the grantor is not incapable of giving a power of attorney. I do have concerns about that. There will undoubtedly be instances where an interested party will attempt to have a power of attorney set aside on the ground that the grantor was not capable when it was executed. I believe in these cases the affidavit of subscribing witnesses mentioned above can be very important in upholding the integrity of the document.
To remove the requirement of the affidavit would result, I believe, in a greater degree of costly litigation in the days to come, as the non-presence of the affidavit will have the effect of making the power of attorney document a far more assailable target for those who would attack it for whatever reason. So I would urge that the affidavit of subscribing witnesses attesting to the person's capacity at the time of execution be retained.
One other possible problem area I wanted to point out is that under the present legislation, when a person gives a continuing general power of attorney, or any power of attorney, it all automatically revokes any previous documents in place. A problem could conceivably arise where a person had signed a continuing general power of attorney for property and finance and perhaps several years later, forgetting about that document, is going away for a time and signs a specific power of attorney in favour of another individual to complete a business transaction, perhaps to handle a bank account or pay bills at the bank. In such a case, the general power of attorney for property previously given is automatically revoked, when clearly it would not be the intention to do so in signing the specific document that I mentioned. So in view of these circumstances, I think Bill 19 could be perhaps improved by containing a provision whereby it is only a general power of attorney that can revoke a general power of attorney.
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I'll make one final comment. I had the opportunity in April 1995 to make a presentation in conjunction with your colleague, Leo Jordan, on the legislation as it was then. During the course of that talk to the audience, I mentioned that a person had only to be 16 years of age in order to be a power of attorney for personal care. I remember the audience gasped in unison at that time and there seemed to be certainly a strong feeling that 16 was just too young for this sort of responsibility. I don't believe the new bill has raised that age but certainly that's a consideration that I would recommend to the committee. I thank you.
Mr Klees: Mr Smith, thank you very much for your presentation. I'd like to just draw your attention to comments that you made on page 3 with regard to the affidavit of the subscribing witness. I think your statement here implies that Bill 19 proposes to remove the requirement of the affidavit of subscribing witness.
Mr Smith: I believe so, sir.
Mr Klees: I'd just like to clarify for you that the SDA did not have a provision for an affidavit of subscribing witness, neither did the previous power of attorney act, so this is not a change. I think what's very important -- one of the reasons that we're even here -- is that the complexity of the process under the previous legislation was such that people were very confused and they found it cumbersome. What I think this would mean is that they would have to come to you as a lawyer in order to put a power of attorney in place. Is that not true? Would that not then add to the cost as well as the complexity?
Mr Smith: Not necessarily. No, not necessarily at all. A person could have that affidavit commissioned -- the witnesses could have their affidavit commissioned in front of a municipal officer or some other such person.
Mr Klees: But it would add that additional step --
Mr Smith: It would add an additional step, but I think perhaps in the long run it might be a good step to be able to hold the integrity of the document, should it be questioned at some future time. You have a sworn affidavit there on the part of the witnesses. I think it could be quite helpful.
Mr Klees: Okay. I did want to clarify that it is not a change, it's not something we're removing at this point.
Mr Smith: The form is presently in use; certainly the forms that are widely in use are including this affidavit of subscribing witness.
Mr Duncan: First of all, thank you for a very thoughtful presentation. In terms of section 32, page 3 of your document, and removing the consultation provisions in section 32 or the addition of a provision whereby a person can include in their power of attorney a clause removing the duties of consultation, it's premised on a notion that's been of some concern to us and that is whether or not a family member or members, or certain subsection of family members, will act in the best interests of an individual. Can you elaborate more on that and share some of your experiences in that area with us?
Mr Smith: Generally I find when an individual wants a power of attorney and designates a particular child, say one child out of two or three, they're doing so because they want that particular child, for whatever reason, to be the one to make decisions on their behalf. Presumably they're closer to that particular child, or friend, if not a child, and they have confidence that that person will make decisions that are the decisions they themselves would have made had they been able to do so.
To require that person in whom confidence is espoused then to have to go and consult with others in the family I think is counterproductive and perhaps contrary to the wishes of the individual who signed the power of attorney in the first place. They gave it to that person for a purpose, they didn't give it to all three, if they have three children, they gave it to the one. So the presumption, I think, should be that that person should proceed without the obligation of consultation.
Mrs Boyd: Thank you for your presentation. While we certainly agree with you that many of the processes that were set up under the previous acts may have been cumbersome, I certainly can't agree with your belief that the Advocacy Act or advocacy is not important. Listening to the people who have come before us and the importance of advocacy for vulnerable people, I simply can't agree with your premise that advocacy necessarily means that government somehow is trying to take over from individuals. In fact, what it was doing was trying to support individuals in being independent.
Some of your concerns that you've described around the Substitute Decisions Act, I agree with. You're concerned about section 32. It's a real concern for me as well because it does make assumptions that consultation is not going to give rise then to challenges as to whether or not the power of attorney was appropriate in the first place. Very often, those very family members who the person does not want making decisions on their behalf want to force decisions according to their values and principles as opposed to the individual's, and certainly at end-of-life decisions, that might be a particular concern, so I wanted to say that.
On the age thing, that's been a real issue and it's been discussed a lot, but the age decision was made, 16 being the age at which children are independent of their parents, on the request of a number of people. Where there is only a child and a parent and that is the only family there is, it would have made it impossible for that child to have some say in terms of what happens to a parent who is ill. There were many representations made to us about those kinds of situations.
The Chair: Thank you very much, Mr Smith, for your presentation.
Mr Klees: Mr Chair, I have a point of clarification. I think it would help the members of the committee. It's with regard to the concern raised by Mr Smith about consultation. It's important to clarify that the consultation is with supportive family members. That would perhaps address, Mr Smith, your concern about family members who may not be supportive of a particular direction.
Mr Smith: I appreciate that. I'm aware that the wording is "supportive family members and friends." I guess at that point anyone who is a family member can be claiming to be supportive when perhaps they're not. There's just a degree of interpretation in there. I do believe that Bill 19 is excellent legislation. I just feel that there are some improvements, perhaps, that could be made in those very specific areas.
MARIANNE TAYLOR
The Chair: Our next submission is Ms Marianne Taylor.
Mrs Marianne Taylor: Thank you; that's Mrs.
The Chair: I tend to use the word "Ms."
Mrs Taylor: I realize it's politically correct.
The Chair: That's correct.
Mrs Taylor: I'm old enough to affiliate it with other things.
My name is Marianne Taylor and I'm an advocate. For the last 15 years I have been paid by the province of Ontario to provide advocacy services to people you now refer to as vulnerable persons. I have worked under the auspices of the Renfrew County and District Health Unit. The name of the program in which I provided advocacy services was the adult protective service program. I regret using the past tense. It is the adult protective service program, which you have come to know under the term APS.
During my tenure of employment with the health unit, I was elected to represent the needs and interests of the regulated health care practitioners who work within the health care environment of the community. This afforded my knowledge of what the requirements of the regulations of working under a college and providing health care can bring for these individuals.
In March 1995, I undertook a one-year leave of absence from the Renfrew County and District Health Unit to act as a rights adviser for the Ontario Advocacy Commission. To the best of my knowledge, I don't think there is anybody else who has had a combination of this tenure and experience in delivering advocacy services in the province.
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I'm not going to try and address the specifics of Bill 19 because I think you'll hear enough of that. I'm going to try and address the impression of advocacy and my opinion of some of the issues which have arisen under a lot of different legislation. Some of you may or may not realize that Bill 188, which I believe arose in 1973, was really the first attempt to codify living wills and informed consent.
This small card, which has a picture of me from many years ago, was that which I used to enter the homes, to enter facilities, and to assure people of my credibility as an advocate who would be accountable under the parameters of the province of Ontario when I delivered services.
This card is my licence as a rights adviser. It serves the same function. It assures people that I operate and will deliver services in an accountable manner under the legislation at hand. It tells people when I walk into their home that if I misbehave or really tick them off, they've got somebody to call and they've got somebody who will deal with me.
It is important for you to know that my ability to continue being employed does not rest in Bill 19. If you abolish the commission, if you abolish independent and impartial rights advice, come April 1, I will be back to providing advocacy services to the people of Renfrew county. I feel they will be greatly advantaged by the fact that I have the knowledge, the training and the experience of having been a rights adviser.
I would also like you to know that today I'm speaking to you as an individual. The people, the groups and the employers which I have referenced will each be making or have made their own presentations and they will represent the collective view. I feel strongly enough about this issue to come forward today, unpaid by the commission and away from my duties, to address these issues.
I would also like you to know that I have just learned that the Clemens coroner's inquest has, through recommendation 31, just recommended that independent and impartial rights advice be continued for vulnerable persons under consent to treatment or what we now know as the Health Care Consent Act.
I think the greatest single dilemma with what I call the partnered legislation of the Advocacy Act, Consent to Treatment Act, consent and capacity statute law amendment -- I've never quite straightened out which comes first, amendment or law. The whole problem with those acts was the fact that they were so grossly misrepresented and poorly marketed in the community.
As an adult protective service advocate who had, since the early 1980s, been committed to independent advocacy and working with the government, vulnerable persons and their families in moving towards independent advocacy systems, I did not have a clue what this legislation was about. I was privy to going to private meetings, to Ministry of Health meetings, to advocacy meetings, Comsoc meetings. I had access that the general public just didn't have, and prior to undertaking the licensing requirements which were provided by the commission, I really had no idea what was going on. I was very angry. If I didn't know what was going on, I was fairly certain that the people I served really didn't know what was going on.
After taking a very lengthy period of time of study and passing examinations, examinations which several of my colleagues did not pass and therefore were not able to provide rights advice or rights information, I become very committed at understanding what this was about. It's just that we weren't allowed to interpret for people. That was unfortunate in some ways because we constantly had doctors and so on asking us: "What does this mean? What should I do?" We'd have to direct them back to their college or the Ministry of Health.
Misinformation was one of the largest problems in this whole legislation, and in that respect, I believe the Bill 19 response is a response to perception and not a response to the reality of how this legislation could have worked.
By suggesting that people -- you tell somebody something, that it's going to cause them to do something that's not good, that's very protective, and it's not, I don't think, where Ontario wants to be. Do we really want to be deciding what each and every citizen should know? I think that's far more consistent with a Marxist agenda than it is with the agenda we now see coming from the government. Citizens, even in incapacity, have the right to know what's going on. They have the right to ask for a review.
Review: the one word taken out of the mandate of the Consent and Capacity Board. I don't know why. I hope that at some point the government will address this. It's kind of like when they took "fair" out of the Employment Standards Act. Don't know why, but maybe there's a reason for it.
The partnered legislation was fragmented. My biggest frustration, and that which I have heard from the more than 400 people I have seen in the course of rights advice in the city of Ottawa, and the county of Renfrew, the county of Lanark etc -- because this is a huge area -- has been, "There's no one person I can telephone." If I want to know about substitute decision-making under the Health Care Consent Act, I've got at least three phone calls to make, one to the Ministry of Health, one to the public guardian and another to the Attorney General, which is a different part of the public guardian.
Citizens have been so frustrated and they've taken it out on, "Well, if you hadn't told that person what was going on, none of this would've happened." Telling them didn't cause this. What caused it was the inability of the system to respond to the needs of families to make this simple, to apply simplicity to this legislation. Going to the review board to seek a decision does not cause difficulties. What it does cause is that you have to trust that you've put the right people at the review board who can make the right legal decisions. So fragmentation needs to be addressed and you've not repaired that in Bill 19.
Advocacy: The Ontario Advocacy Commission never implemented the legislated advocates. I was offered the job, thought I had it, and after the election, "Sorry, we're not implementing it, so you get to stay a rights adviser." Well, thank you, I mean it's been interesting, but I would rather have been an advocate.
Therefore, we've had a gap. The other day I watched a doctor. I had responded to a consent-to-treatment call. I was there within an hour, as we usually are, within an hour or so. If I have to go up to Pembroke, maybe it's going to be three hours, but that's our top priority. We're there. We've never missed. That doctor, after I had served him written notice, which he can put in his file, which says what the decision of the patient is, turned about, he could not find a substitute decision-maker. He was calling the families. I watched him for an hour, because I was seeing other people, and every time I came out he was on to another family member explaining what the situation was, and they were telling him to go away. They don't care. They don't want to have anything to do with it.
Finally, he called the public guardian. The public guardian said, "Hey, if there is a living and breathing family member out there, we can't help you." So the doctor turned into an advocate, came to me for help, and I would never admit to you here today that I ever did that because that's not my function. That doctor could've seen six or seven patients and done his real job rather than doing my job of an advocate.
You've not repaired that in Bill 19. Doctors, nurses, hospitals, facilities and family members will be so frustrated by trying to assume their responsibilities. I have a bit of a nightmare of my sister and I trying to make a decision about my mother, and we're not dysfunctional, we're just normal people who have different points of view, and if mom ever needs our substitute decision-making, our diverse values and beliefs have no reconciliation in Bill 19.
The lack of training provided to regulated health care practitioners, the public guardian and most people has been a real problem in this. The transition from the current legislation to Bill 19 is going to be a nightmare. I have no problem telling you today that as a rights adviser, I am on legal termination of employment notice from the Ontario Advocacy Commission to take effect on March 29, 1996.
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As I understand it, third reading couldn't even begin until March 19. If you believe that 10 days are sufficient, the mayhem that we saw on April 3, 1995, will look like a party compared to what will happen on March 30, 1996.
I believe in advocating for rural communities. I come from Renfrew county. We have no schedule 1 psychiatric facility. We have, however, been forced to live with the substitute decisions and consent to treatment act, which removes our rights and removes our ability to respond to issues of incapacity. We are still kept at home. We still lose our property. We still send our seniors to places where nobody will hear them, and yet we do not make any effort to make sure that the provisions are still in place for that person to have the same access to rights information and advocacy.
In a psychiatric facility at this time, a mandatory referral is made for rights information. What made psychiatric patients so special? Whatever happened to my mother? So if a capacity assessor, which by the way I personally can't afford on the salary you pay me, decides that my mother is not capable of property management, she loses the right to manage that property under Bill 19. Yet, you have done nothing to ensure her right to rights advice under the Health Care Consent Act. People living in the community do not have the same opportunity for rights information and facilitation.
I would suggest that perhaps the government may wish to look at making this a more equitable society and say, "Maybe not just psychiatric patients need rights advice and rights information; my mother and my children may also need it." They'll get it from me, except it really won't be rights advice, because I'll have their best interests at heart, and that's not what rights advice is about.
I do believe that it is important for you to consider looking at having advocacy available to serve the needs of all citizens. Advocacy is a very defined and skilled trade. It is one where emotion does not enter into arguments represented on behalf of vulnerable persons. It is one which respects the integrity and actions of family members. It is a non-intrusive service. I don't know where this came from, just because you can go into a home.
This little card issued to me by the province of Ontario in 1981 gives me the right to enter any facility between dawn and dusk, and any home. This is not new. It's how it's carried out. As a government bringing forth legislation, you I believe have the responsibility to ensure that all citizens of Ontario have the right to those little anomalies and those very real situations out there which have kept me in business for 15 years. I don't often see overly healthy families. I don't often see overly healthy individuals. I deal with situations of gross abuse, neglect and even where your own laws have served to marginalize an individual.
I might say to you, just going back a bit, one of my real efforts in 1981 was to have the government realize that it's not fair to have family benefits cheques sent just to the man of the house. This was outrageous, just outrageous. People thought this was a bizarre notion. I think we now realize, and it does happen in Comsoc, that the lady of the house may also receive the family benefits cheque if that's the agreement of the couple.
So when we talk about advocacy and we talk about what seems bizarre today, 10 years from now that may be seen as very routine. I know that was a minor example. Usually the situations are more serious than that.
On a final note, I would like to tell you that it is my personal belief that advocacy and advocates are a function of the political right. In the political left, regulations abound. Everybody's regulated. There's really no room for people to move outside of the parameters. In the political right, which is where advocacy did evolve from in the early 1970s, there's an aspiration to get to that ideal family, that ideal situation, that ideal response. But there's the recognition that the advocate is needed for those situations where the ideal is not being met.
Mrs Caplan: I think you've put the case very well. I don't think the government is going to not scrap the Advocacy Act as part of Bill 19. So one of the things we've been looking for or some of the things that we could do to amend the bill as it stands now that would leave in place I guess the foundation -- you've identified one advocate service that's been around for a long time: the adult protective service.
You mentioned the Psychiatric Patient Advocate Office. They only have a mandate in provincial psychiatric hospitals. So not only do you have two classes of people in the province; you actually have even two classes of mental health patients, and one of our proposals is that the Psychiatric Patient Advocate Office's mandate include all of those who are in a provincial program, as opposed to just a facility.
Would you support that kind of amendment to the legislation, albeit that it doesn't achieve your goal?
Mrs Taylor: I realize we're stepping back. Basically, I think we're heading back to 1973 and we'll have to mature and grow again and try and get it right this time. I would support the Psychiatric Patient Advocate Office assuming rights information and advocacy, continuing with that, provided that there were no other options.
I have worked with these people. They were brought in to work with us and I have come to know them; in eastern Ontario, we had a great relationship with our PPAO counterparts in Kingston and Brockville. What we did see very clearly was that there's a totally different set of skills which comes with working in a community environment, in acute general hospitals, working and going into someone's home as opposed to the common environment of one facility. That would have to be dealt with. I also believe you have community-based advocates through the adult protective service program.
Mr Marchese: Just to make a few comments in agreement with what you said and then to ask you some quick questions. First of all, with respect to education of the public, there was another group behind you that also talked about that. I agree strongly that governments almost have an obligation to explain their laws. We also leave that education to the public and to those people who need to administer the law, and often that leads to a great deal of confusion, as you also pointed out. So we have to do that.
The other point you made is, why do psychiatric patients have access to rights advisers and why not the rest of the population? You mentioned your mom. We agree with that. We think rights advisers are a must, and I'm looking forward to seeing what the government will propose. Mr Klees says we've gotten rid of the Advocacy Commission and the act but we will restore advocacy. What that means, we're not sure. I'm not entirely clear about what they might propose. In fact, I'm worried about what they might propose, because we don't know yet and I'm certain it'll be very minimalist, if any.
You point out, with respect to the whole notion of rights advisers, that they're not intrusive. A previous speaker, a lawyer, said he was happy we got rid of rights advisers because it was a whole new bureaucracy whose whole purpose was to intrude on person's lives. You pointed out how that isn't so and how accountable you are for your actions.
Last question: Given that they're going to eliminate the Advocacy Act and the rights advisers, what suggestions do you have to this government about what else they might be able to do?
Mrs Taylor: I think the government needs to understand that the elimination of rights advice puts the government at risk. There's going to be a lawsuit. You won't be without rights advisers long, because there will be court actions that will decide you need them. I think the doctors will revolt. The doctors in Ottawa have been very clear with me that they like getting written notice of the decision of the patient. They like the expediency. They like the idea that they are free to do medical work and to meet the best interests and ethical obligations of their work.
Rights advice: I don't have a proposal other than saying that rights advice is necessary. If we're a democracy and we actually believe that all our adult citizens have the right to know about decisions which will remove charter rights of liberty, the management of property and finances and who will do what treatment to my body, then you can't be without rights advice. I don't believe it is the function of any volunteer who has no accountability, and I'll tell you, no volunteer would work in the conditions I've worked in. No volunteer would be able to stand it. You cannot flinch. When you are meeting with a patient and a doctor and the patient strips down, you can't flinch.
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Mr Parker: Thank you very much for your comments this morning. I was looking over the recommendations that are a few pages into your submissions here. I just wanted to follow up on recommendation number 5, that the bill "provide for equitable and reasonable access to capacity assessors for all citizens...regardless of community and/or income level." That's a concern to us as well, frankly, and one that we felt needed some attention. With that, we took a few steps towards addressing it in subsection 71(2) of the Health Care Consent Act. That's on page 102.
Mrs Taylor: I didn't bring my act with me. Sorry.
Mr Parker: Okay. What the proposed bill provides is that in certain cases a single assessor can act alone, and there are particular qualifications that have to apply to that assessor before the assessor can act alone. If you read the qualifications, it reads much like the qualifications for a high court judge. Particular assessors can act alone in that capacity, and that gives some flexibility to the provisions of the bill, so where a remote location is involved, you can get the assessor up there to carry out the assessment. You're not involved in the cumbersome apparatus of a large assessment board with the whole process that would apply in other cases. That's an attempt to give some flexibility to the bill to make access to assessors a little bit more readily than at present. I wonder about your comments on that.
Mrs Taylor: I think perhaps some of my point may have been missed. What I'm saying is that as long as you have a set and established rate that must be paid by the citizens of Ontario to exercise their rights, to exercise their options under legislation, you should have a mechanism -- some people will say there is one but I know there isn't; I know it's not working -- that allows everybody in Ontario, regardless of income, to access a capacity assessor, or to not be disadvantaged by happening to live in Pembroke and the capacity assessor's in Ottawa. You're going to pay four hours' travel time, so your costs go up.
I think what I'm suggesting to you is yes, make the system more user-friendly, but the beginning of that is, let's get rid of the absolute élitism of the Substitute Decisions Act. It is so élitist that it is only available to people with the money and the knowledge to exercise the options under it. The rest of us are going to have to go hightailing to the psychiatric facilities in order to get the doctors to do exactly the same thing.
The Chair: Thank you, Mrs Taylor, for sharing your concerns with the committee today.
BILL CARNE
The Chair: Mr Bill Carne. Welcome. You have 20 minutes, including questions, and you have the floor.
Mr Bill Carne: Thank you very much. I'm not doing too well this morning. I recognize that the government didn't like advocacy, and it was my intent to go back to what I call my year of hell just to show you why rights advisers are required. My problem is, I am reliving that and it's hard to talk coherently at times.
This morning I wrote some of these thoughts. I've been thinking what to say to this committee for the last month. It's been the only thing I've done since Friday evening. As I mentioned, I had a great deal of difficulty focusing on it and I could not figure out why until recently.
I know the government wants to repeal the act. I don't believe it would be wise. It would be very costly in human terms, and to me, even more importantly, it's more costly because it helps maintain what I see as being an inefficient institutional mental health system.
By the way, I should say that I call myself a professional crazy person. Sorry, I'll do that later. That shows you how incoherent I am right now. Anyway, I'm reliving my year of hell. I'm reliving the pain, the panic and despair that I was then experiencing.
In the formal part of my presentation, I had planned to refer to research showing that the most productive thing in helping us when we're in trouble is "somebody who believes in me." But the stigma of having a mental illness is so great in our culture that things can happen to us with the tacit approval of our society that would be considered to be an outrage if it happened to ordinary citizens.
That's where the Ontario Advocacy Commission came into our lives. I have trouble when I say these words. Finally, there was someone out there who believed in us. There was a lot of positive therapy in knowing that, even if we never used their services. The only reason why I'm able to talk to you today is because somebody believed in me. I had a very supportive GP.
Anyway, the more formal part is, my name is Bill Carne. I've been acting as an advocate for people who have used mental health services for the last five years. I'm the member of a board of directors of two groups of consumer/survivors in Ottawa. I'm a member of the Friends of Schizophrenics families group, as well as the self-help group of those diagnosed with schizophrenia. Because of the mental health reform process I am at the table with all kinds of professionals and to achieve equal status I now refer to myself as being a professional crazy person. As proof of my insanity, I would far rather attend a committee than go to a movie.
But I'm quite lucky, it's not under the DSM IV. I forgot my props here. This is the big book that decides whether or not you're crazy. So I'm not crazy for that apparently.
I'm one of the lucky people who are crazy. I was educated, had a career and then things happened to me. As a result, I've got a degree in physics, which taught me to determine why an event is taking place. I have a masters degree in electrical engineering which taught me how to go from a known existing situation to achieve a given objective and then I got sidetracked and got a degree in social work -- I think I was my most primary client -- in community development and that taught me how to ensure the human element is included in achieving any objective.
I've been diagnosed with nine different kinds of craziness. I do agree with schizophrenia and major depression and dissociation, which is a mild form of multiple personality disorder.
In summary, I've a very unique way of looking at the world. I recognize you get lunch after I talk and I was hoping to offer you some food for thought, and I hope I still can.
I think I should say, though, the views expressed are mine and not necessarily those of the groups that I belong to. Most of my comments apply to those who have a psychiatric disability. I recognize that for those who do not have the ability to make decisions for themselves, as say in severe cases of Alzheimer's, the rights advice process is probably a waste of time. But since, as I will show later, there's no accurate means of determining competency, easy access to a formal review board hearing is needed in order to be fair to disabled people when they're vulnerable. This is especially true for the situation of people with a psychiatric disability because their competency varies widely with time.
I think it's important to recognize that when you use the words "mental illness," every person you would talk to has a different impression of what it is. Part of that is because the diversity among people who are diagnosed with mental illness is extremely great. There are those where the illness comes on early and, as I mentioned, there are those who were educated, had careers and then something happened. There are those who believe they've been well helped by the mental health system and there are those who believe they've been so abused by it, they want to abolish it. There are those whose condition is mild and there are those who were in so much pain that they chose death as a way to end the pain.
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I think it's important for the members of this committee to understand what happens to a person when they're declared to be mentally incompetent. If you talk to a psychiatrist, it is something very positive and valid. What is left unsaid is that it's a form of incarceration where more basic civil liberties are lost than a criminal loses in prison. In some ways, it's worse than being a criminal. A criminal is not locked up for something they did until after the trial. A psychiatric patient can be locked up, based upon the opinion of a psychiatrist, for what they might do in the future. There's a great difference.
That leads to one of my main issues. In general, it is impossible to accurately predict people's future behaviour. But that is what a psychiatrist is asked to do when they determine mental incompetency.
There is no way of predicting which stressors and supports a person might encounter in the future. Behaviour that indicates irrationality in one person can also be behaviour carried out by a stable person and we get judged by our behaviour, and not by what we're thinking and feeling.
For normal people fines for speeding would not be permitted unless radar was 100% accurate; the same is true for giving fines or suspending drivers' licences after a breathalyser test is given. If they're not 100% accurate, it would never be allowed in our society.
I gave a talk to the Ontario Psychiatric Association about a week ago about stigma as part of a panel and recognized from my comments and the panelists' comments and questions from the audience just how much stigma affects our lives and how again things that wouldn't be acceptable for normal people are considered to be quite rational for us.
So because of the stigma of mental illness in this country, its citizens are willing to have us locked up based upon the opinion of what someone thinks we might do in the future. If I were better prepared, I could show to you that a psychiatrist cannot predict well competency. I know of personal cases, people who should have been in the hospital who were able to say what they needed to say, act in a certain way and they got out. I know people who didn't need to be there and were locked up for 100 days, which is $40,000 of the government's money, and they had no need to be there. In this case, a psychiatrist had confused her physiological disability as being a mental incapacity. So it ranges from the two extremes.
To me, that's why rights advisers in some format are required even if the Advocacy Act is abolished because there is no 100% accurate means of taking away your basic civil liberties because there's basically no trial before we are committed. Some means for those who would want to appeal is necessary. It's to be just fair, and I think it's important if the government doesn't do it, then some well-trained and independent body does it. I have fears that each hospital being allowed to hire rights advisers who will just ensure that whatever the hospital says goes.
I don't know if I should use this or not. As I say, this is the thing for diagnosis. I sometimes think they should include politicians in this, if I might suggest. I know you put in long hours. I know whatever you do, somebody's going to call you wrong and try to abuse you for it. I know for what you do the pay is quite low, so why anybody who is sane and competent wants to become a politician -- should become crazy sort of thing. But it's not in the book, so you're okay.
Why I tie into that is, I find it always very upsetting when something goes wrong and somebody kills somebody, injures somebody, like we had recently in Ottawa, and the hint is the person has a psychiatric disability. Immediately on the radio and the TV and in the press, psychiatrists come by and say, "Well, the Mental Health Act is not strong enough that we could lock up this person." I take great exception to that because you get cases -- a husband has said very specifically "I will kill my wife," and I never hear the psychiatrist saying "Well, the Mental Health Act is too weak to prevent me from locking up these husbands."
There are some very violent people out there. I know, one of our members in one of the groups I belong to was very violently attacked in the elevator of her apartment, and the guy lives there. He attacked somebody the previous week and he's just a time bomb waiting to go off. I never hear the psychiatrist complaining that the Mental Health Act is not strong enough to lock up these type of people. It's only because we have the stigma of being crazy that the laws change.
I think some of you are aware of what was called the Krueger trial out of Brockville. About two or three years ago one of the people there brought along a friend, a former inmate -- this is Lieutenant Governor's warrants -- to go for a day pass. As soon as they were out, they killed a third inmate that this person didn't like. For about six months afterwards there were hearings and trials and I kept reading in the papers, "The Mental Health Act is not strong enough to lock up these people." But the fact was, this guy's a Lieutenant Governor's warrant, the doctors had total control of his behaviour but they could not predict that an hour later he would kill somebody.
That's why I want to emphasize that the means for determining our incompetency is quite inaccurate. You have to, in all fairness, provide a means to at least have a second hearing on the matter.
I can ramble for a bit but maybe you could ask some questions.
The Chair: We have minutes left, Mr Carne, and we'll start off with Mr Parker.
Mr Parker: I think I have about one minute to work with, is that correct?
The Chair: One and a half minutes.
Mr Carne: With my answer, right?
Mr Parker: Mr Carne, maybe all I can do in that minute and a half is just respond to the general point that I take from your remarks this morning, which is that you and others like you suffer a great deal of pain in your condition and we recognize that and I sympathize with that. I do recognize the pain that is associated with the condition you have suffered under and what you have had to endure.
What we have to concern ourselves with is what is the best way to address that pain. If we could wave a magic wand and make it go away, we would do that. There is the presumption behind the existing legislation that the Advocacy Commission has that magic wand, and we question whether it has that effect, or whether it's wiser to let families and people close to the individual affected care for them, take care of them, make the decisions, and assist in that process and not have somebody coming in from the outside and interfering. We just question whether having an outside party interfering is going to assist with the pain at all, or if in fact, it may just add to the pain.
I'm not asking for a comment back from you. I don't know if we have time with the time left. But that's the concern we have with the whole process that we are faced with, with the existing legislation.
Mr Carne: I can make two comments. One is, about a year and a half ago when David Reville was first appointed chair, I was at a meeting, and I made the mistake of going off topic and mentioning in passing I think I could tell when people are becoming incompetent, and he tore into me for five minutes. He basically said: "My rights advisers are to give people advice about what their options are. I do not want them to be measuring or determining your competency. If they do, I'll fire them. If they start giving suggestions to these people, I will fire my rights advisers. Their total position is to present people with the options available and let's listen."
And two is, to me, it's better to have somebody who is more neutral, it really is. Family members sometimes get too close and they can't see the wider picture. I know, I belong to the FOS families group and to Depression under Depression, and in both cases the family members -- you know, death is a very major option. I think one person out of 10 diagnosed as schizophrenic actually dies, and four out of 10 actually try, so keeping your sons and daughters and family members alive is their prime directive. The other problem is, they are declared incompetent and, a lot of cases, they don't need to be there, and I don't know how you balance that. I don't have a solution to that one.
Mrs Caplan: Thank you very much for, I think, a very important presentation to the committee. We appreciate that. The question I have for you is, in the meantime, we know they're going to scrap the advocacy legislation. You've had experience with the PPAO, the Psychiatric Patient Advocate Office. Would you support an expanded mandate for them so that everyone under the Mental Health Act, whether they're in a provincial institution or having service provided from a community mental health program or a community hospital, would at least have access to those rights advisers and advocates under that organization?
Mr Carne: I have little association with the provincial psychiatric hospitals, only locally. I used to, five years ago, act as an advocate and people phoned. As I mentioned, there is one case, a woman was in the hospital for 100 days because they couldn't distinguish what her incapacity was -- yet definitely some means where an independent person presents people with their options and stops talking and listens, and they say, "I don't want to appeal this," that's it, they leave; they say yes, it goes to the process, just a second court of appeal because you can't predict competency accurately.
Mrs Boyd: I want to thank you as well for your presentation. It helps very much and I know it takes a lot out of people to come and talk about their personal circumstances. You might be interested to know that a couple of years ago they tried to put a section in that probably would have covered us all. It was a masochism syndrome, so it may well have had the effect you suggested.
When you talk about the independence of rights advice and the need for people to respect the right of a person once they know what their rights are to have that decision be their decision, do you think that even with this new act it's too complex in many cases for people with the current kind of information that people have to be able to lay out what those decisions are? Would you see a large function being an educational function to enable people to exercise their decision-making appropriately?
Mr Carne: I think for most people I know who end up in a hospital, in many cases it's close to the line whether they are or are not incompetent and endanger themselves, and that's the hassle, I really admit that one. But if you're there, even when you don't need to be, it's a sudden shock. You've lost your freedom; you're confined to quarters; you're taking medication which may not be helping you. There are a bunch of other strange people. You're in a hospital setting anyway. To be able to act as your own advocate is a very rare ability under those circumstances.
I've got a fair knowledge of this, at least the previous legislation and I would know enough to appeal for reassessment, very likely do it competently and go through the hassle. I know just trying to get a form for somebody else from the hospital is a real big hassle. They say, "We don't have them." You say, "You have to have them." Then they talk, "Oh yes, we do," and they go to some back file. It's a real hassle to act as your own advocate when you're in the hospital.
The Chair: Thank you very much, Mr Carne. I know how stressful it is, not just yourself, but for all of us, and we appreciate your presentation today.
Mr Carne: Thank you.
The Chair: We will be recessing to 1:20.
The committee recessed from 1204 to 1320.
ROBERT FROOM
The Chair: Our first presenter, in substitute for the person who was listed, is Mr Robert Froom. Mr Froom, could you tell us on whose behalf you are speaking?
Mr Robert Froom: I'm speaking as a private citizen. My brother is a vulnerable person.
The Chair: Fine. The floor is yours. You have 20 minutes, including questions.
Mr Froom: As I say, I'm coming here as a private citizen. I'm not associated with any particular agency, but I felt it was very important for me to speak to the subject of the Advocacy Act and to speak against Bill 19.
I'm here to bring to your attention the consequences of not having a systematic method of ensuring that vulnerable people's rights are respected. I bring with me 40 years of personal experience on the matter and over 100 years of family history. I know the limitations and capabilities of families, and I have no interest in returning to the days when families took care of their own.
Just to give you some background, my brother suffers from a condition called Norres disease. It's only recently been understood. It resulted in him being blind at birth and developmentally delayed, and in his middle age he has gone completely deaf. He is a vulnerable person, and I'll go into more detail. It's a genetic disease and I've had three uncles who suffered from the same condition. A hundred years ago, there were two other members of our family who suffered from this disease. I can draw on a lot of experience. I'm bringing it to you today because I think it has relevance to the Advocacy Act and Bill 19.
It would seem that the intent behind Bill 19 is to reduce government interference into private lives. It seems to be based on the assumption that the Advocacy Act is too intrusive. "Leave well enough alone" seem to be the operative words, yet there are vulnerable people all over this province who need a voice and who deserve to live better lives. They used to live in attics and basements. A hundred years ago, they were seen to be God's punishment and quite literally they never saw the light of day.
Today, we would want to rescue a person who was confined in such a way. We would want to protect a person from abuse by his family. But this bill seems to think that intervention into family matters would be just too intrusive.
We all agree that the state has the right to interfere where our fundamental rights are abused or that the state has the right to expropriate land for roads. Why, then, would the government not act on its responsibility to protect all its people and to support advocacy for the rights of vulnerable adults?
There seems to be an idea that families are best suited to advocate for their disabled family members, but there are problems with families taking on this responsibility. Vulnerable people cannot pick their parents. Not all families have financial resources. Not all families are stable. Many vulnerable people do not have families at all, or worse, they've been abandoned by their families.
Two generations ago, my grandfather was a farmer in southern Ontario. Actually, just before that he was a school principal in northern Ontario. He held a very responsible position. But in 1925, he moved his family south to take up farming because it was becoming increasingly difficult to serve as a school principal with three of his five children blind and developmentally delayed. Socially, at that time, it was a stigma to have disabled children.
The Depression was hard for farmers and it was hard for him, and after 10 years of trying to cope, he lost his farm for unpaid taxes. By this time, one of the boys had died of accidental causes in the home. So he put his other two blind and developmentally delayed boys into his car and he drove them to Toronto, where he left them in an institution. He went back to northern Ontario to work in the mining industry in menial labour, and when he got his feet under him he sent for his wife and his normal children. He never saw his developmentally delayed children again.
Most families are caring and loving, but cannot face the responsibility of caring for a family member indefinitely. A generation ago, one of the children who was left in that institution in the 1930s -- he's my uncle -- had made his way to live with my parents and their young family. He lived in the attic and spent his days stripping insulation from copper wires as occupational therapy. When my brother was born blind and developmentally delayed, the family just could not handle the strain. My uncle drifted down to Toronto, and without proper supports, he slipped deeper and deeper into institutionalized life. By the 1960s, he was diagnosed as being deeply depressed because he no longer spoke.
What was not understood at that time was that he was losing his hearing and that he was increasingly being cut off from the world around him because he was already blind. Eventually, he was given extreme forms of therapy for his wrongly diagnosed depression. It's a tragedy.
I am convinced that advocacy would have significantly changed the direction of my uncle's life. His hearing loss would have been identified and he would have received intervention services earlier in his life. He died last November, after a long and lonely struggle.
Presently, my brother is 52 and he is both deaf and blind. He's developmentally delayed and he lives in a nursing home. He has been living in homes for the aged since they were called that, about 28 years, to be precise. Being both blind and almost totally deaf, he is increasingly cut off from the world around him. In general, people are unable or reluctant to communicate with him. Often, he goes for days without meaningful communication. He has caring and loving parents and brothers and a sister who love him dearly, but this is not enough.
Thirty-four years ago, when my brother David was 18 years old, he was no longer qualified for public education and his parents were faced with difficult decisions about his future. They consulted the family doctor, who brought in a psychiatrist, and on the basis of very little information and faulty judgement, they had my brother admitted to Brockville Psychiatric Hospital. What really needed to be addressed at that time in his life was a need for housing.
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He was there for four years and complained that he was not allowed to wear his own clothes and that other patients harassed him about sexual matters. Now, over a quarter of a century later, my brother still says frequently when I visit him that he forgives his family for making such a terrible mistake.
My brother was eventually discharged from the hospital and was found, two weeks later, in a state of extreme anxiety in a nursing home 100 miles away. It seems that the hospital had neglected to tell my parents that he was being discharged, nor did they tell my brother where he was going. I am certain that if the Advocacy Act was in effect in the 1960s, my brother's life would have been less emotionally scarred.
Today, my brother receives 10 hours of intervention from CNIB deaf-blind services each week. His CNIB intervenor is his lifeline to the world around him and she helps him communicate with fellow residents, the nursing home staff and his family.
Until last fall he received three visits from his intervenor each week. I'd like you to imagine what it would be like to receive three visits a week and during those visits you must do all your communication, during those 10 hours a week. We know there is no other communication when his intervenor is not there.
Due to provincial budget cuts, his intervention time has been consolidated into two visits per week to save on transportation costs. This is an intolerable reduction in his services. At a time when my brother is facing the total loss of his hearing, the very services that help him connect to his world are being reduced. David needs an advocate who understands the system to ensure that he gets the services he needs and to lobby for the services that he needs but that so far do not even exist.
Communication is my brother's biggest need. He needs more intervention time, not less. The consequences of not receiving intervention services are well known from our past experience in the family.
I attended a meeting last night for the family members of vulnerable people receiving case management from an MCSS-funded agency. We were told at that meeting that the agency providing case management to my brother had lost its contract to do so and that a new agency would be taking over his file. This is not in itself a tragedy; things like this happen. But it is a tragedy that my brother's file has been bounced from agency to agency over the period of years. In the past four years, his file has been handled by three different agencies. This is after a period of about five years of being on a waiting list.
These are the people who are supposed to be advocating for services for my brother and addressing his urgent need for community-based housing. Due to his communication deficits, none of the case managers has gotten past the friendly visit stage, the very earliest stage in the intake process. No progress has been made -- none.
The tragedy of other generations is repeating itself and my brother remains in a nursing home -- not in an attic, but he is out of sight. This is the part that concerns me most: My brother is not unique; in fact, he's typical of vulnerable people. In recent weeks, the sheltered workshop at Silver Springs Farm has been closed, sending numerous developmentally delayed workers back to the limited resources of their home.
Tonight there's a meeting at Algonquin College to discuss the termination of a program for developmentally delayed individuals. As one developmentally delayed client of community integration service put it at last night's meeting, "We are never informed about these changes; they are always done to us." We should all be listening carefully to the vulnerable people across this province who are having services withdrawn and their rights removed by Bill 19. At this critical time, a time when new directions are being set and difficult decisions are being made, we need the Advocacy Commission and the Advocacy Act more than ever, yet this is the very time the Advocacy Act is being repealed by Bill 19. Shame, shame, shame.
That concludes my presentation.
The Chair: Thank you, Mr Froom. We've only got two minutes left, so you're going to be limited to about 30 seconds each. Mr Duncan?
Mr Duncan: No questions. Thank you for a very profound presentation.
The Chair: Third party?
Mrs Boyd: I think you and your family were promised that disabled people would not suffer as a result of the changes, and you've told us that you are. Thank you.
Mr Klees: Thank you very much for your presentation. It's occasions like this that certainly help us and guide us. I can just assure you that the government will do everything it can to ensure that advocacy in this province will continue on an effective basis for people like your brother. I also want to say thank you for the advocacy that you represent, because you've certainly advocated very effectively today.
The Chair: Thank you for your eloquence, Mr Froom. Unfortunately, that's all the time --
Mr Marchese: There must be time. I think he wanted to reply to Mr Klees's comments.
Mr Froom: Just because I'm here does not mean that families can adequately advocate for their loved ones.
Mrs Boyd: Mr Chair, I wonder if I could table a document with the committee. I have in hand the jury recommendations stemming from the evidence in the Lonnie Clemens inquest. I would like to table these and ask for them to be circulated to all members.
The Chair: We agreed that would be tabled. Thank you very much for obtaining that, Mrs Boyd. The clerk will have them copied and distributed to the members.
CANADIAN COUNCIL OF THE BLIND KINGSTON FRIENDSHIP CLUB
The Chair: Canadian Council of the Blind Kingston Friendship Club, Mr David Renwick.
Mr David Renwick: First of all I want to thank you for allowing me to address the committee, and I'd like to briefly introduce myself. I am a visually impaired male. The medical term for my visual impairment is congenital aniridia; that is, in layman's terms, I have no iris in my eyes, which is the blue part or brown part. While I do not consider myself mentally incapable or developmentally challenged, this condition is oftentimes associated with mental retardation.
I am here, however, as a representative of the Canadian Council of the Blind, which is a national, non-profit, charitable, self-supporting and consumer-driven organization. We are a friend, advocate and educator of blind and visually impaired people across Canada, their families and friends.
There are some 1,800 blind, deaf-blind and visually impaired people in our area. Add to this the number of people simply enrolled with the Canadian National Institute for the Blind and visually impaired as a result of other medical problems, and you can see that there's quite a wide base.
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I am here today because the membership of the Canadian Council of the Blind Kingston Friendship Club has some great concerns about repealing the Advocacy Act. We feel there is a need for advocacy. There are many things to be advocated, especially on a systemic level. Employment is one of these things, and if I can, I'd like to briefly use myself as an example.
There is, I suppose, some small minority of people who appear content to exist quietly on social services, but there are a vast number of people who want more than just a job. We want a career, and as I said, I'd like to use myself as an example. With the help of vocational rehabilitation services and the assistive devices program, I have gone to school and I've studied hard. Now the Ontario government says I'm qualified as both a hairdresser and a developmental services worker, but it is still impossible to find a job due in large part, I feel, because of my vision.
Some other issues that need to be advocated are access and safety issues. It does no good to build wheelchair ramps on sidewalk curbs if people in wheelchairs can't get into stores; or if a store or a public building is wheelchair-accessible, it is oftentimes accessible through some dark alley and you have to wheel past a garbage bin and through a back door somewhere. That's just not right. We are people too and should be able to use the front door.
Public transit is another example. Kingston Transit, as opposed to OC Transpo, has black handrails on a black door and that is very difficult for people who are visually impaired or totally blind. The other thing that Kingston Transit has is white edging on the bus steps. This was put there as a result of Ontario seniors lobbying to have that put there. What I would advocate is that that white edging simply be changed to yellow so that it can serve two groups for the same cost. I don't imagine the cost between white and yellow paint would be terribly different.
There are many other issues to be advocated as well. There are health care concerns, and I will direct your attention to the last four pages of my brief, which talk about laser eye surgery and how it can correct myopia. Yet the Ontario government and OHIP say it's cosmetic surgery. It seems to me there's a certain logic in there, that if one can correct a person's handicap and get them off social assistance and into the workforce, the government would actually save itself some money. Other issues to be advocated are such things as safety concerns, audible signal lights, that sort of thing.
While it can be argued that the Ontario Human Rights Commission could possibly advocate some of these issues, it is clearly not prepared to handle all of them. Based on its policy of putting conditions on having, say, a driver's licence as a condition of employment, in one breath the Ontario Human Rights Commission says it is discrimination to say that you need a driver's licence and in the other breath it says it's not discrimination because people are accustomed to cars and depend on them. Unfortunately, blind or visually impaired people don't have that luxury. Unfortunately, the Ontario Human Rights Commission just is clearly not prepared to handle these things for us.
If the idea behind Bill 19 is to be financially responsible, that objective is fine, but the problem is in how we reach that objective. The Ontario Ministry of Community and Social Services no longer has its Council of Consumers which was set up four years ago to be a voice for its clients. Also, Community and Social Services no longer is guided by the Challenges and Opportunities multi-year plan. It seems to me that if the idea of saving money is the objective of Bill 19, full integration into the community is just as true today as it was four years ago. The need for advocacy is just as great today as it was four years ago, for advocacy means giving people the opportunity to make informed choices. Living in the community does that; it gives us that opportunity.
I would just quickly close with saying that I would be remiss in my responsibilities as an advocate if I did not suggest that there were some other things that the Ontario government could look at in saving money; things like dispensing fees for prescription drugs -- there's quite a vast difference. The Ontario government helps pay for these things through family benefits or other social assistance programs and also helps to pay for these things for senior citizens. I'm sure that if it were to look at the dispensing fees, the Ontario government would save itself some money.
There are some other ideas which unfortunately time and financial constraints just don't allow me to bring here, but I would be happy to answer any of your questions if I could.
Mrs Boyd: Thank you very much for your presentation, Mr Renwick. I really appreciated it.
You spent a lot of time in your presentation talking about the desire of people to be self-sufficient and to be able to live independently, and about the problems around employment. Of course, one of the real issues for us is that in addition to the disappearance of the Advocacy Commission, this government has also repealed the Employment Equity Act, which was designed specifically to assist people who face the kind of employment issues that you deal with. So you're really bringing to our attention the fact that there's a cumulative effect of things that have happened to you and to the people on whose behalf you advocate under this government. With employment equity disappearing, now the Advocacy Act disappearing, the changes in social assistance, the changes in terms of the drug benefit plan, it all adds up to a very bleak picture, does it not?
Mr Renwick: It does, yes, not to mention the more recent changes in Bill 26 as well.
Mrs Boyd: Yes. So the need for advocacy that you talk about is probably going to be greater and greater as time goes on, as people find themselves in more and more difficulty trying to maintain their self-sufficiency and their dignity in the face of these changes.
Mr Renwick: Right.
Mr Marchese: Just as a brief question, you heard the previous speaker, Robert Froom; I think you were here to listen to the previous speaker, were you not?
Mr Renwick: Yes, I was.
Mr Marchese: He makes a strong plea for retention of advocacy advisers, for advocacy in general. He points out that sometimes families are not there to help individuals who are not capable, or sometimes don't have the wherewithal or the means, or it's difficult, and that it's important to have advisers and an advocacy commission to help people who need those services. Do you have a comment in that regard?
Mr Renwick: Yes, I do. Mr Froom's presentation was quite good. The obvious thing here is that as the need for advocacy becomes greater and greater, I believe what you're going to find, and it has started already, is that groups are going to spread out. If I can again use the Canadian Council of the Blind as an example, I'm here representing them, but we have people who are diabetic, people who suffer from multiple sclerosis, people who have cerebral palsy, to name but a few. That is going to happen more and more, that there are cross -- and that's great, because the more we work together, the better we can make things happen.
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Mr Clement: Thank you again, Mr Renwick, for your presentation. I just wanted to springboard off something Mr Marchese said. Maybe you'd like to respond to this. Effective advocacy existed long before the Advocacy Act, existed during the Advocacy Act, and it's going to exist after the Advocacy Act. The Advocacy Act doesn't eliminate advocacy. What it does, in our view, is deinstitutionalize it again, put it back into the friends and family in most cases, where that is appropriate, and allows them to be close to the people they love. I think we're all in favour of advocacy; it's a question of how you construct it in one's society. Does that make sense to you at all?
Mr Renwick: Yes, it does.
Mr Clement: Much of what you said had to do with something we haven't talked a lot about directly: systemic advocacy, advocacy for change of the way various persons in our society are treated or have to struggle. I'd like to get a handle from you about some of the advocates for change already in the system even without an Advocacy Act. I'm thinking of the Ontario Advocacy Coalition and ARCH, two very articulate institutions and spokespersons for disabled persons. Are they not doing a good job, or how do you feel about them?
Mr Renwick: I can't say with any great degree of honesty that they are doing a good job or a bad job. I know they exist, from a personal standpoint, and that's really about all I can say. I know from experience in working with handicapped people that a lot of the people I talk with don't know they exist, so I would have to say they may be doing a good job but they could do better, especially at getting their name out there.
Mr Clement: We've got to work together to strengthen the volunteer sector on advocacy so they can do a wonderful job independent of government. I think advocates are strongest for their cause when they are independent of government. That way, they have much more credibility and legitimacy. But I thank you for your comments.
Mr Duncan: You spoke quite well about your views about the repeal of the Advocacy Act, and the government has brought forth the Health Care Consent Act. Given that the government will repeal the Advocacy Act, do you have any comments specific to the proposals contained in the Health Care Consent Act and the Substitute Decisions Act amendments that might help us in formulating amendments that will provide at least some enhanced advocacy.
Mr Renwick: It's my personal feeling that there are some concerns. Alarms bells went off in my head when I was reading the proposed changes to the Consent to Treatment Act which specifically said that, given consent, the doctor is then allowed to presume you give consent to alternative treatments. Knowing that there are people out there who have allergies and such, and possibly a limited capacity to appreciate a whole lot of information and still make an informed choice, that gives me a little bit of cause of concern. Substitute decisions? I really am not a whole lot comfortable with that yet. I only recently, within the last two weeks, got my hands on Bill 19, and it's been an awful lot of reading just to do what I have done with regard to the Advocacy Act.
The Chair: Thank you very much, Mr Renwick, for your well-written brief. The committee thanks you.
COUNCIL ON AGING -- OTTAWA-CARLETON
The Chair: Our next submission is from the Council on Aging of Ottawa-Carleton; Marian Chapman, president. Ms Chapman, perhaps you could identify those appearing with you.
Ms Marian Chapman: I will. With me are Nicole Guénette, Carol Burrows and Jim Lumsden.
Mr Chairman and members of the committee, the Council on Aging -- Ottawa-Carleton, is a non-profit planning, coordinating and advocacy organization serving 70,000 residents of the region of Ottawa-Carleton 65 years of age and over. One of the fundamental roles of the council is to study issues and advocate on behalf of the senior consumer when appropriate.
In responding to Bill 19, we have collaborated with other groups whose focus is support of vulnerable persons in order to bring a holistic approach to the issues. The names of all members of the task force are listed on page 9 of our brief.
With me today are Carol Burrows, from Disabled Persons Community Resources; Nicole Guénette, from Psychogeriatric Community Services; and Jim Lumsden, who is a family representative.
The scope of our brief: The government has previously given heed to the many expressions of concern during previous public consultations on the Advocacy Act, 1992, and its companion legislation, and the experience gained since its proclamation last April. We commend them for this. However, there remain some concerns, which we would like to comment upon today. We will make recommendations which we put forward for your consideration during your clause-by-clause study and the subsequent development of regulations under the acts. In the interests of time, I will be summarizing the information contained in our brief.
Our first concern relates to protection for vulnerable persons. The purposes of the Advocacy Act included contributing to the empowerment of vulnerable persons through the promotion of respect for rights, freedom, autonomy and dignity and providing advocacy services. Its repeal removes any formal mechanism for a legislated or authorized advocacy system for persons, wherever they reside. There is a need to coordinate the efforts of families and other volunteers who provide services and assistance to vulnerable persons.
The aim would be to supplement these efforts with advice, assistance and support, so it is recommended that a replacement group be established which will undertake a review of means to provide support, assistance and coordination of those many family members and existing volunteer organizations who undertake advocacy tasks for vulnerable persons regardless of where they may be in the community.
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Now to advocacy. Our recommendations for the provision of advocacy are addressed according to the settings where vulnerable persons are encountered: residents living in facilities, persons receiving care in the community and, finally, individuals residing anywhere within the community who are neglected, abandoned or abused.
Regarding advocacy in long-term-care facilities, a capability to undertake advocacy is required for both residents who have substitute decision-makers and those residents without family or friends to speak on their behalf. In addition to dealing with advocacy issues within the facility, there is a need to maintain contact with external agencies whose policies and sphere of influence affect the quality of life and care of residents. This might be accomplished through family or volunteer participation on residents' councils. However, residents' councils as they currently exist are not the appropriate vehicle, due to the ever-advancing age of entry and increased care needs of residents.
It is therefore imperative that a means for such advocacy be established. This could be instituted through several possible mechanisms; one is the revision of the role and function of residents' councils, with the inclusion of strong substitute decision-maker representation; another is the inclusion within the legislation of a mandatory requirement for an advisory board of substitute decision-makers and family members.
Although beyond the scope of the present discussion, we also urge the government to develop a mechanism for advocacy whereby residents of retirement homes and other care facilities which do not fall under the jurisdiction of the present legislation will be adequately protected.
Therefore, our recommendation is that Bill 19 make provision for the establishment and empowerment of a body within long-term-care facilities which is mandated to provide advocacy on behalf of the residents.
Next we deal with advocacy in the community. The wide dispersion of care delivery in the community requires another type of mechanism to link vulnerable persons with those who could advocate on their behalf. It is suggested that this could be done initially by the provision of details of such assistance at the time of seeking service through the new community care access centres. This process could clearly set out a person's entitlements, rights and reasonable expectations and advise them on how to make contact with the volunteer advocacy groups for the help they may need.
Therefore, we recommend that community care access centres be required to develop a capacity to advise on the availability and means of contact with existing community advocacy services.
Finally, advocacy for individuals who are neglected, abandoned or abused. There are many persons who are not in receipt of care in either a long-term-care facility or through community services. Individuals who are neglected, abandoned or abused are the most vulnerable in our society and lack family or friends to speak on their behalf. There is a need for a proactive advocacy capability for these persons who may not be capable of, or are prevented from, seeking advocacy assistance. It is critical for the safety of such persons that there be a mechanism for rapid intervention to assert their rights. This capacity must be legislated and supported with the necessary authority to inquire into cases of potential abuse, neglect or abandonment. This would include provision of right of entry under closely controlled circumstances.
A close relationship with the office of the public guardian and trustee would be essential in these situations. It is noted that the Substitute Decisions Act, subsection 87(1), now provides for that official to appoint volunteers to provide advice and assistance. There is a lack of clarity regarding the intent of this section, including the role, recruitment, selection and training of these volunteers. It is unclear whether the volunteers would be able to meet the advocacy needs of this group of vulnerable persons.
Our recommendation is that there be a capability to coordinate the efforts of the volunteer advocacy and support services agencies which act as advocates for persons who are neglected, abandoned or abused. Persons who serve in such a capacity must be provided with adequate authority and rights to perform in an effective manner. This would include the right of entry. We also recommend that the role of volunteers referred to in subsection 87(1) of the Substitute Decisions Act be clarified in the legislation.
Our next comments concern the scope of practice for health practitioners. The legislation states that health practitioners can override the decision of the substitute decisions-maker in cases regarding emergency treatment and treat, despite refusal, if they feel that the substitute decision-maker is not operating in the best interests of the individual. As a safeguard, it is recommended that in circumstances where a health practitioner proposes to override the decision of the substitute decision-maker, a second opinion be obtained where the situation makes such a second opinion reasonable under the circumstances.
It is also important that advance directives or living wills be given recognition in the legislation, since at times the decision not to treat, even in the case of an emergency, has been a well-thought-out decision.
Therefore, it is recommended that the primacy of living wills and/or advance directives as the considered and expressed wishes of the incapable person be given formal recognition in the legislation.
We now address capacity assessment. An issue which has come to our attention relates to the difficulty in accessing capacity assessment services in the community. Capacity assessment can now be done in only two ways: The first is through admission to a schedule 1 facility for a determination of capacity, at no cost to the individual requesting the assessment; the second is by certified assessors in the community, at considerable cost to the person requesting the assessment.
The method of determining capacity through admission to a hospital is counterproductive, given the cost to the system and the fact that hospital bed closures are imminent. This will undoubtedly increase the pressure on the remaining institutional beds. It is obvious that people who require a capacity assessment and, in certain instances, are living in the community at considerable risk to themselves and their neighbours will not be well served by the inevitable delay this will cause.
In addition, the high cost entailed in obtaining an assessment in the community by certified assessors results in assessments simply not being done in many cases because, with the present rules, outside a hospital setting the person who requests the assessment, not the patient, is responsible for the prohibitive cost involved.
We are therefore recommending that psychiatrists affiliated with community psychiatric services which are associated with a schedule 1 facility be able to perform capacity assessments in the community.
We now move to the Consent and Capacity Review Board. Bill 19 authorizes panels of single members to deal with particular applications. The impact of decisions on the life, dignity and wellbeing of the individual suggests that more than one person should be involved in a hearing in order to avoid possible prejudice or bias. The former requirement for written reasons for decisions on a universal basis has been amended to require such reasons only when they are requested.
We have two recommendations on these issues. It is recommended that a panel consisting of three members be the minimum required for a hearing. It is recommended that the present proposal whereby reasons for decisions will only be provided on request be amended to require that the board provide each party or the party's counsel or agent with written reasons for its decision within two business days after the end of the hearing. It should also provide that such reasons shall be accompanied by a notice of right of appeal under subsection 78(1) of the Health Care Consent Act.
We come now to communication. Subsection 23(3) in the Health Care Consent Act states that the initiation of emergency treatment may be undertaken without consent from a capable person due to a language barrier or because the person has a disability that prevents the communication from taking place. It is essential that such inability to communicate not be mistakenly attributed to inebriation or mental incompetence. It is crucial that health practitioners be aware of alternative forms of communication and that the capability to access such alternative communication form a part of the operational procedures where emergency treatment is generally delivered.
Therefore, the recommendation is that regulations developed under the Health Care Consent Act clarify what would constitute reasonable steps envisaged under clause 23(3)(b) when providing such emergency treatment to capable persons without their consent.
In closing, we commend the government for its action in clarifying and simplifying existing legislation related to advocacy, consent and substitute decision-making. There are, however, some remaining concerns, which we have set out in our submission. These are elements critical to the protection of vulnerable citizens and we forward them for your consideration of amendments to this proposed legislation. Thank you.
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Mrs Johns: Thank you for your presentation. I just want to explore a couple of things with you, if I might. In your recommendation 7, talking about advance directives, advance directives or wishes expressed by a person do take precedence over any other circumstance. I am unsure if you're coming at something else by this comment, but an advance directive basically is precedent unless there is some reason to believe they haven't expressed a wish after that time frame. It's important to realize that advance directives will be given the priority they deserve, so you can set an advance directive and it will be recognized.
Ms Chapman: We didn't see the actual words "living will" and "advance directive" in the document.
Mrs Johns: I can find you the subsections and let you know. Section 4 is where we're talking about that. So it's just that you want to see the words in there?
Ms Chapman: Yes.
Mrs Johns: Okay, thank you. In section 9 -- I've been on this all day. I don't know if you've been around all day and have heard this.
Ms Chapman: I haven't been here, but I listened in Toronto.
Mrs Johns: Coming from rural and northern Ontario, it sometimes takes up to seven days to get a board of three people together to ascertain that we can move forward. That's way too long, and in some particular circumstances we have to look at a one-person board just to be able to move forward. We've made some pretty stringent requirements, I believe, about who this person can be, ie, they have to be a lawyer; they have to have been on a board prior to this time; they have had to be on the board for two years; they have to have had experience with the particular topic they're adjudicating in this circumstance. I believe we have safeguarded the person but that this allows us to move on in the case where we need to have this go quickly. Do you have a problem with the one-person board under those circumstances?
Ms Chapman: Yes, we do, and the task force dealt with that at great length. We certainly felt that one person could lead to a certain degree of bias or prejudice and that three persons was a better solution to this issue. Nicole, would you like to comment on that?
Ms Nicole Guénette: All of us have some racial or significant prejudice sometimes -- it's probably not voluntary but it's sometimes there -- and we've felt that more than one person would eliminate the possibility of any kind of prejudice in any decision, especially when you're looking at capacity and these issues that are very delicate because we're dealing with stressed families or neglected individuals. I can see your point of view as to rural areas, that it can become difficult, but I think prejudice and bias are always present. It's just to eliminate that aspect. It can be the best person in the world, the best lawyer with the best experience, yet there are circumstances where more than one protects that eventuality from happening.
Mr Duncan: Your recommendation 2, that Bill 19 make provision for the establishment and empowerment of a body in a long-term-care facility -- I presume you're saying a body that would be independent of the facility itself and would have its own governance structure.
Mr Jim Lumsden: Yes. We would see it as being entirely independent from the management of the home.
Mr Duncan: And that's because of potential conflicts of interest?
Mr Lumsden: Yes, and of course that leads to the extension of having some coordination capability that the board can talk to, external to the home.
Mr Duncan: Further to the point raised by my colleague opposite about the single-person hearing, the concern we share with you is that I know lots of lawyers who've been out 10 years that I would not want arbitrating on my behalf, quite frankly. I think you answered her question very properly. We'll be bringing forward some amendments around that whole area.
Mr Ramsay: You talked about establishing a replacement group to conduct a review. Do you see that group potentially having additional powers after it would do that, maybe giving it the power to allocate resources to fill up some deficiencies in the province, if they were to find some?
Ms Chapman: We were not providing a solution here. We were just indicating areas that we felt needed to be addressed, so we did not deal with solutions.
Mr Lumsden: What we would like to see, though, is the capability to provide programs of public information. As Mr Renwick said, in response to Mr Clement's question about ARCH and the Ontario Advocacy Commission, there is a requirement for public information. Someone must be coordinating that type of information going to the public. There is a need for someone who has a full understanding of advocacy as well.
You dealt with Mr Froom's issue of out of sight. Mr Froom's brother is lucky he has a brother who is that active. What will we do with a person who is very deep out of sight? This group would look to this sort of thing. Eventually, you may see us referring to the power of entry we would like to see be established.
Ms Carol Burrows: When we're talking about people having families, the families do not always act on behalf of the person, even when they are present. One regrets having to say that, but all of us who work in the community know it's true.
Mr Marchese: I want to make some comments by way of agreement with a number of the things you've said. One of them has to do with the point you made around communications on page 7, saying that, "It is crucial that health practitioners be aware of alternative forms of communication." I believe that's fundamental.
A woman appeared in front of our committee who was deaf and could not speak. What reasonable steps do we take to understand that particular kind of difficulty? I like what you said in there -- well, it's hard to find the points in the brief, but we'll go back to it. I just think that your observation is an important one.
With respect to the Consent and Capacity Board, having more than one panelist has been a recurring theme with people here. Government members try to justify it in their own way in terms of why one and that in northern regions it would be difficult to get two or three, and so on, but the majority of people who've come in front of this committee from a number of places have said, "You need more than one person."
There's something that informs you about why we need to have more than one person, that when you're dealing with capacity it isn't a matter that one individual has the ability to reason and all that. When we're dealing with capacity, a number of things come into play, and to leave that in the hands of one individual is a problem. You identified bias or prejudice or discrimination as something we should also look to, that having a second person there is sometimes a security or a check in that process.
I wanted to get to some of the areas you talked about in terms of advocacy, because a lot of what you said here is really what we were trying to implement through the Advocacy Commission. Although you're recommending different things about how to create advocacy, essentially the Advocacy Commission was trying to do this.
What Mr Froom identified earlier, and so many others, is that we need advocacy. Volunteers are fine, but they don't have the expertise. Families are good, but they don't have the expertise at times; they burn out. Some of them are not capable. Some of them are abusive. What all of you are pointing out is that the state, contrary to what Mr Clement says, needs to be there to provide the rights advice, that we can't simply hope that the volunteers and the families are always going to be there doing the advocacy for those poor vulnerable people; that we as a government have a responsibility to put something in place to make sure that vulnerable people have something to hang on to. Any comment on that?
The Chair: Thank you, Mr Marchese. We have to proceed.
I thank you very much for the care and the trouble that's gone into your presentation. I noted you had 14 on your task force, and I can imagine the time it took to reach a consensus.
Mr Ramsay: I think the record should show they nodded.
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ONTARIO RESIDENTIAL CARE ASSOCIATION
The Chair: Our next submission will be from Mr David Porter of Bearbrook Court Retirement Residence. Welcome, Mr Porter. You're not associated with Bearskin Airlines or anything like that?
Mr David Porter: No.
The Chair: I was declaring a bias. If you would proceed, sir.
Mr Porter: Thank you, Mr Chairman and members of the committee. The Ontario Residential Care Association, or, as we call it, ORCA, is a voluntary organization of owners and operators of retirement and residential care facilities. ORCA was founded in 1977 and currently represents more than 220 care homes providing assistance with activities of daily living for about 15,000 residents. ORCA member facilities employ more than 10,000 staff.
Across Ontario there are approximately 23,000 residential care beds. The average age of residents who occupy those beds is about 84 years old, an increase of five years from a decade ago. In some jurisdictions across Ontario, residential care facilities are also home to a younger population of disabled or post-psychiatric patients.
Residential care plays an important role in the long-term-care continuum. We fill the increasing gap between home care services and the extended care support delivered by nursing homes and homes for the aged. As our population continues to age and the demand for a limited number of long-term-care beds increases, we fully anticipate the contribution of retirement and residential care services to continue growing.
We participated in the committee hearings involving the Advocacy Act, the Substitute Decisions Act and the Consent to Treatment Act in the early stages of the previous government's mandate. Like many health care provider groups across the province, we expressed concerns about the Advocacy Act.
We argued that by its own definition in section 1 of the act, a successful advocacy initiative should result in the need for few, if any, provincially designated advocates since the spirit of the concept involved moving towards self-advocacy. In fact, the residential care environment has long promoted the rights of residents to make personal decisions. It is our strong belief that delivering quality care can only occur when done in a setting that encourages individual dignity and autonomy.
Our association urged the previous government, at a minimum, to test its Advocacy Act on a pilot basis. We were concerned with the complexities inherent in a system which involved reporting to a commission through untold numbers of quasi-judicial advocates handed extremely broad mandates.
Most importantly, we were concerned with a system that appeared to promote confrontation between caregivers and advocates. The act gave advocates the right to enter any building on the reasonable belief that there were vulnerable people inside. In fact, this meant that an advocate could enter a residential care facility at any time and go on a fishing expedition for advocacy issues. Then, with almost as little basis for their action, they could tie up valuable staff time searching for and copying records. Warrants were either not required or could be obtained without naming a single vulnerable person.
We have registered staff in most residential care settings. We also have qualified support staff who contribute to a supportive and compassionate environment, and we strongly believe our staff is committed to delivering care that is in the best interests of our residents.
We applaud the government's move to repeal the Advocacy Act and, given the nature of our client base, we further endorse changes involving substitute decision-making and consent to treatment intended to reduce red tape and strengthen resident support. Examples can be provided in the question period, if you wish. The rest of the presentation will concentrate on issues of particular concern to us; that's examples of particular things that we support in the legislation.
Our experience in the residential care sector is that families or designates often play a participatory and caring role in meeting the changing needs of our residents. Although our services are predominantly private-pay, we have historically experienced limited problems with payments. In the odd case where a family member or designate appears negligent, we agree with the concept of contacting the public guardian and trustee as a last resort.
We believe that rights advice, as it is currently detailed in the act, is a system that is restrictive and one-dimensional. We support the government's position to delete the rights advice from the Consent to Treatment Act.
People familiar with residential care settings will know that, as a standard of practice, registered staff will provide rights advice. Non-registered staff, such as administrators, who are generally sensitive and informed are also capable and willing to provide residents with rights advice. We prefer the flexibility inherent in removing the cumbersome system as it currently exists.
We suggest that there may be merit in applying the hierarchy of consent in section 18 to include residents of residential care and retirement homes, rather than just stopping at the nursing home level. It seems impractical and costly to force family members to hire a lawyer to arrange for power of attorney in cases where residents are deemed incapable of making a decision. If you want further explanation of that point, I can do so.
We wonder if there may be further merit in expanding the personal assistance plans to include services beyond long-term-care facilities. As you know, personal care planning is equally important in the delivery of chronic and residential services as it is in nursing homes and homes for the aged.
We are concerned, however, that the capacity threshold as proposed in Bill 19 may be too high. We believer that the proposed concept may be counter-productive if approval for a care plan by a substitute decision-maker overrides the ability of residents to make routine, daily decisions involving their personal care. Encouraging residents to participate in routine decision-making is a vital component of any meaningful personal care plan. Again, I can provide an example of that.
There is another area of concern which we believe should be considered prior to the passage of Bill 19. About 18% of our residential care population rely upon general welfare assistance. This program was initially set up for frail elderly people who require funding support. However, over the years GWA recipients have become predominantly post-psychiatric patients.
In GWA cases, agreements to meet an individual's care needs are handled directly between a local social services agency and an approved residential care operator. A condition of residency for any post-psychiatric patient who chooses an approved residential care facility involves care plan compliance. These care plans are developed in co-operation with a person's physician, social services and the residential care facility staff.
If there is an Achilles' heel in the system, it involves the post-psychiatric patients who, after living in a stable residential care environment for a period of time, opt to lead a more independent life in the community. This is their choice; in fact, this is the goal that the province and the caregivers hope to achieve for these individuals.
It is, unfortunately, not always a realistic goal. It's our experience that many of these individuals return to the system soon after they exercise their choice. The absence of a stable living environment, which fails to provide the necessary nutrition and medication regimen, contributes to the revolving door syndrome that our residential care operators often witness.
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Typically, GWA residents lack family support. Because they are usually considered competent, there is no involvement with the public guardian and trustee. We know that, through a structured environment, many GWA recipients are capable of participating in community programs and even holding jobs. We believe the revolving door problem is very real, very costly to the province and counterproductive to the individual. Perhaps a more thorough assessment by area social services is required when a person requests a move from a residential care setting into the community. A review of one's condition, history and previous experiences in the community might be a prerequisite to approving any move into the community. We know this recommendation does not fit nicely into either the existing or proposed sets of legislation, but it is important and should not be overlooked.
There may be other considerations that benefit the individual and assist the province to control costs. A living will or advance directive, for example, signed by an individual prior to discharge from the hospital might empower social services to intervene prior to a community crisis and readmit an individual to the residential care facility of his or her choice. In this way, persons with predictable cyclic patterns of hospitalization and recovery could make decisions for themselves when they are well that they may not be able to make during periods of breakdown.
Under the previous government, the Ministry of Community and Social Services commissioned Ernst and Young to perform a comprehensive domiciliary hostel review. We believe it was a fair assessment, with appropriate recommendations. However, we are not aware of the study's current status. We suggest this document may be helpful in addressing the unique situation involving the GWA population living in residential care settings.
In the main, we believe Bill 19 is a productive and positive step forward. We hope our comments have been helpful, and we thank you for this opportunity to present to the committee today.
Mr Ramsay: Thank you very much for your presentation. I wanted to ask you to clarify a little more the area of rights advice. You say you support the government's position to delete the rights advice from the act, yet you go on to say that people familiar with residential care settings will know it's basically a matter of practice that it happens. I know you're concerned about the red tape in the existing legislation for how that rights advice has to be delivered, but would you object to having it put in the act that it's at least a requirement, though it may be delivered in a much more casual way, that the patient understand they have the ability to appeal that decision?
Mr Porter: I think we would agree with that. We had a problem with the formal requirement for basically an outsider to the whole treatment process to come in and interfere with its natural flow, particularly in the case of GWA post-psychiatric residents, by providing advice to people who are maybe not in the best position to handle it right at that particular time. That's why we proposed the idea of the advance directive for those people, so they could make decisions at a time more appropriate in their own lives, when they're more capable of doing that.
Mr Ramsay: I'm glad you agree with that, because my concern is that it may not be the standard practice everywhere. I feel that by trying to correct something that was too bureaucratic in the present legislation, government has maybe gone too far by eliminating it entirely. Especially, if people have the right to appeal, they should be notified of that.
Mrs Boyd: Let me clarify. Your association represents retirement and residential care facilities that are currently unregulated. Is that correct?
Mr Porter: That's right.
Mrs Boyd: Some of what you suggest suggests to me that you may be looking for some regulation in some areas. Would I be wrong in assuming that?
Mr Porter: For the last number of years, actually, we have proposed in our association that there be some regulation of our sector, and we presented that point of view very strongly when the discussions were under way to introduce Bill 120, which put us under the Landlord and Tenant Act and the Rent Control Act. We argued at that time that even if there was some control over our rates, which we didn't absolutely definitely object to, we would go along with that. We did not belong in the Ministry of Housing. We belonged in Community and Social Services or Health. In fact, our association has set up its own standards system and its own self-evaluation system of residences to meet that need.
Mrs Boyd: Was that effort in response to the Lightman report, Dr Ernie Lightman's report, which looked at unregulated residential care and found indeed that there was great evidence for the need for rights advice and for the need for advocacy for people living in those facilities? It is a report that many found shocking and I find it rather surprising, quite frankly, that we would take very seriously the notion that rights advice was not required in a setting, having read the evidence in the Lightman report. I'm amazed.
Mr Porter: Well, we're speaking for our association members, and we feel that right now we have a system of standards and so on in place in our own association which is well regulated and well inspected and in those facilities the staff and the administrations very much have the needs and interests of the residents in mind. We'd like to see that kind of regulation throughout the entire industry, but we don't want to have this kind of more bureaucratic system of rights advice, which in many cases could interfere with the treatment or care plans, as a kind of halfway measure. We'd rather see that the other facilities which are not members of our association are subject to more regulation, perhaps through municipalities, if they're not willing to join our association.
Mrs Boyd: That was certainly Dr Lightman's finding, that some were good and some were --
The Chair: Thank you, Mrs Boyd. Mr Johnson.
Mr Ron Johnson: Mr Porter, I want to thank you for your presentation. It was certainly insightful. I want to say it's encouraging to see that you support the government in its move to repeal the Advocacy Act. To steal a line from my colleague Mr Marchese, you're not the first person to come forward with that idea. We've had a number of people who --
Mr Marchese: Two more people who did have said --
Mr Ron Johnson: There have been a number of people who have come forward and expressed a number of different ways that advocacy service can be provided more at the grass-roots level and that advocacy service isn't about a bureaucracy. Advocacy service is about providing grass-roots service to people who need it, and it's encouraging to see that you recognize that as well.
I guess where I'm going with this is, I want to get some ideas from you, if you have any suggestions, on ways we can sort of tap into a lot of the volunteer organizations that are already there, ways we can possibly organize that so there's a concentrated effort to provide organized advocacy service, and of course the government to play a role, whether that be in training or otherwise. I just want to get some feedback from you on that.
Mr Porter: It's something I haven't thought about in a great deal of detail. I think members of our association do support the concept of vulnerable individuals having somebody they can turn to when that's necessary, and I think if we could involve some existing volunteer groups, that would be great, but we don't want to have this kind of a system where people can come in and almost cause trouble. It's set up so that that's possible, so that somebody can walk in and start going around fishing for issues that may not exist, but if you talk about them long enough, maybe you can make them exist.
The Chair: Thank you very much, Mr Porter. The time is up and we thank you for your presentation.
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CANADIAN MENTAL HEALTH ASSOCIATION, OTTAWA-CARLETON BRANCH
The Chair: Our next submission is from the Canadian Mental Health Association, Heather Smith-Fowler. Welcome. If you could identify yourselves for the purposes of Hansard, you then have one half-hour, including questions.
Interjection: Twenty minutes.
The Chair: Or 20 minutes, sorry.
Ms Joanne Lowe: Gee, I thought we were getting another 10 minutes there.
The Chair: No, unfortunately not. We'll be walking to London instead of flying if that happens.
Ms Heather Smith-Fowler: My name is Heather Smith-Fowler. I am a member of the board of directors of the Ottawa-Carleton branch of the Canadian Mental Health Association. I am also chair of the Community Housing Resources Coalition, which is a coalition of community members to try to expand and help better coordinate the housing stock in Ottawa-Carleton and supports for people with mental illness. I am also a family member of somebody who has been diagnosed with mental illness.
Ms Lowe: I'm Joanne Lowe and I'm the executive director of the Canadian Mental Health Association, Ottawa-Carleton branch.
Ms Smith-Fowler: As you may know, CMHA is a non-profit organization involved in the planning and delivery of services for people with a serious mental health disability. It's directed by a community board and partnered with members of the community, including consumer survivors, family members, other community agencies, government representatives and planning bodies. Our focus here today is on the implications of Bill 19 and how changes to the Substitute Decisions Act and Consent to Treatment Act and the revoking of the Advocacy Act will have an impact upon the lives of people who experience a serious mental illness, such as depression, schizophrenia and manic depression.
We at CMHA believe in the rights of self-determination and choice, and we believe that people who experience mental illness and other types of disability have the same rights as those who do not, and we believe that these rights need to be respected by all people at all times.
But we can't assume that the rights that are provided to all people are respected at all times. There are some people who, through no fault of their own, are unable to insist that their rights be respected. Children, people who are disabled, the elderly, basically anyone who in any way relies on another person or a group of people for care, support or financial assistance can be considered vulnerable, and these relationships have a power imbalance. There must be a system that ensures that trust and rights are not violated.
While in most cases the person upon whom an individual depends for care and support is respectful of rights, we know, there's documented evidence of tragic abuse and rights violations. On the most tragic end of this continuum is the case of Joseph Kendall, who was a resident of a care home in Orillia, Ontario, and who died in 1987. As you know, it was the coroner's inquest into his death, which disclosed neglect, which led to the Lightman commission, which in turn studied the conditions of care homes across Ontario.
The Advocacy Commission was established to protect vulnerable individuals from these types of abuse, neglect and rights violations. Their third-party, objective role is intended to ensure accountability and the safety and security of the more vulnerable people in our community.
The government has stated concern that this commission is bureaucratic and intrusive and that advocates could enter institutions and hospitals and even private homes without a warrant and at virtually any hour of the day or night and that the members of the commission had the power to examine records belonging to an institution, in some cases without the consent of the people they related to.
We believe that the right of entry and the right to access a facility's records are necessary powers in the rare event that an institution attempts to prevent access of a rights adviser to a patient or client. The rationale that the current government is using to revoke the Advocacy Act and disband the Advocacy Commission is one which hinges on a belief in the protection of privacy and self-determination, but in this case it's not of an individual but of an institution and the self-determination of a professional body. One of the aims of the Advocacy Commission has been to protect privacy and self-determination of the individual. We don't believe that it was ever the intent of the Advocacy Act to override individual rights, but to enable an individual to exercise them.
In terms of the role of rights advisers, we like to think that, as professionals, it's our professionalism that makes us objective, but it doesn't. There's a common belief that health care professionals are objective, and they're not-we're not. Each person is subject to their profession, their way of viewing the world, their work, their clients or patients, and it makes them inappropriate to be third-party rights advisers.
There's also a notion that the process of providing rights information and advocacy is confrontational and adversarial, but in most cases, advocates have tried to avoid confrontation and attempt to work cooperatively with family, friends and service providers.
We believe that clients, in working with their health and social service workers, their family and their friends, intuitively know what's best for themselves, even though it may seem to be in conflict with a profession's values and belief system. We may not agree as professionals with their choices, but they have a right to these choices. We may not even agree with them as family members, and we have the responsibility to support these choices. It's critical that we listen to people and respect their decisions regarding their own treatment and care.
With the adoption of Bill 19 as it currently stands, there will no longer exist a truly neutral third party that can do individual case, systems and rights advocacy for vulnerable individuals. The proposed amendments which Bill 19 brings to the Mental Health Act will permit the minister or psychiatric facility to designate rights advisers to provide rights advice in psychiatric facilities.
But instead of advocates providing rights advice, this rights information will be provided in specified situations by specific persons working within the system, and there's great danger of subjectivity and conflict of interest. There's also the great danger that the values and beliefs and needs of the patient will be lost. This is a common and concerning experience of psychiatric patients, as I think you've already heard today.
Bill 19 must be amended to guarantee a vulnerable person's rights and access to a third-party objective person to work on their behalf.
Ms Lowe: I'd like to spend some time speaking to the Substitute Decisions Act. Subsection 24(1) of the current Substitute Decisions Act provides that a person who provides care to an incapable person cannot be appointed his or her guardian of property. Exceptions to this are included in subsection 24(2). Bill 19 will amend this section to allow a person who is providing care to also become a court-appointed guardian of property "if the court is satisfied that there is no other suitable person who is available and willing to be appointed." This amendment could permit a caregiver to also be guardian of a person's property. This provision could lead to potential abuse by caregivers who could, under the guise of providing care services, appropriate an incapable person's property.
Also of concern to us is subsection 50(2.2), which removes the ability of a patient who has previously granted the power of attorney for personal care to then be able to revoke this power of attorney once the power has come into effect.
Similarly, we see the provision which waives the grantor's right to apply to the Consent and Capacity Board for a review of a finding of incapacity as being a denial of a person's right to due and fair process.
Although a person may be incapable of making informed decisions when their symptoms of the mental illness are most acute, there will be many times when their symptoms are being managed or have alleviated to the degree that they are quite capable of informed decision-making. The cyclical or episodic nature of mental illness demands that a person have the right to appeal decisions of incapacity.
Bill 19's removal of other aspects of the Substitute Decisions Act also concern us, for example, the deletion of subsection 66(12), which prohibits the use of electroshock as aversive conditioning without consent, and the amendments to subsection 66(10), which delete the requirement that the guardian not use or consent to the use of restraint or confinement unless this was consistent with the guardianship plan. Such amendments expose the vulnerable person to horrible abuse.
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I'd like to speak to the Health Care Consent Act. This act was created to protect the vulnerable person's right of informed choice and to protect those who are assessed as being mentally incapable of making informed choice regarding treatment. The Health Care Consent Act, however, focuses more on the rights and protection of health care providers than on clients' rights.
The Health Care Consent Act, in subsection 2(1), excludes certain things from treatment such as assessment of capacity and routine care that is not a risk to client or patient. A health care professional is no longer required to ask for or receive consent for these aspects of treatment. Nor is a practitioner required to ask for or receive consent for an adjustment of variation in treatment if that practitioner deems the adjustment poses no risk to the patient. In this manner, Bill 19 merely strengthens the power of the health system and professional, rather than the powers of the patient or the individual.
The Consent to Treatment Act allowed professionals the right to provide treatment in situations of emergency; that is, when a patient is experiencing severe suffering. The Health Care Consent Act, in subsection 23(1), broadens this allowance to include when a patient is deemed to be apparently experiencing severe suffering, in the opinion of the professional.
Where are the criteria for emergency? Our concern is that behaviours which are symptoms of a mental illness may be seen as problematic or inappropriate to a health practitioner, and be assessed by a health practitioner as rendering a patient incapable of decision-making. We are very concerned that treatment may then be given to control these symptoms with the justification that it was an emergency.
Bill 19, in section 23, also gives the right to a health practitioner to treat in an emergency when a person is capable of providing or refusing consent but when communication between the health practitioner and a person to get consent can't take place because of the person's disability or language barrier. Section 23 states that reasonable steps must be taken to find practical means of enabling the communication to occur.
With the cuts already being made in the health and social services sector by this government, and the resulting tremendous pressure on professionals to be providing more and more services with less resources than ever, what is reasonable and practical can barely meet the basic needs. Special or minority needs, such as francophone staff or cultural interpreters, are very rarely met. We are very concerned that in these cases rights will be violated. We believe that the purpose of the legislation should be to protect minority rights and needs.
While recognizing that genuine situations exist when treatment must be provided immediately, the vagueness of the words "emergency" and "reasonable steps" and "practical means" may result in the creation of many loopholes for rationalizing the denial of rights. This section must state clearly that it is the professional's responsibility to ensure and demonstrate that all possible means of communication are explored prior to any treatment being given.
Ms Smith-Fowler: In terms of determining capacity, in Bill 19 it's not clear what the specific procedures or criteria are for determining the capacity of a person to provide informed consent. Previously, a person's incapacity was determined by someone experienced as an assessor of capacity, but the current bill seems to leave this determination to clinical practice.
In our view, this is even more disturbing when the Consent and Capacity Board, which reviews appeals, does not require in its composition anyone with expertise in evaluating capacity, except when it is a panel of one, when that review board must have relevant experience but not necessarily expertise. While the amendment to the Mental Health Act states that to deal with applications under this section the board must sit in panels of three or five, it's unclear as to when the individual will be afforded a panel of three or five or one.
We believe that the Consent and Capacity Board should always be composed of a minimum of three objective persons with relevant background and experience. We recognize that efficiency and timeliness are critical in health care, but we urge this standing committee to provide a fair objective process that ensures that individual rights are not put at the mercy of what is convenient to the system.
In terms of the role of family, we at CMHA strongly value the role of family members in the lives of people with a mental illness. We see daily the commitment and caring these family members provide to their loved ones. We hear of and know and witness the struggles, the grief and joys that parents, brothers and sisters and children of people who experience mental illness, what they go through. We believe that these family members do have the best interests of their kin at heart.
We also recognize, however, that what a child, a parent or a sibling wants, or believes is best for their relative, may not be what that relative wants. A family relationship should never nullify accountability to the individual. We feel that Bill 19 weakens the accountability of family members, since a formal statement will no longer be required before the decision is made on behalf of their so-called mentally incapable relatives.
According to subsection 27(6) of the bill, health practitioners will be permitted to rely on assertions by family members, or anyone else who gives or refuses consent to treatment on an incapable person's behalf, and to rely on the accuracy of these assertions without formal statements being offered by these family members.
By way of conclusion, the CMHA, Ottawa-Carleton branch, strongly urges this committee to revisit the fundamental principles upon which the Consent to Treatment Act, the Substitute Decisions Act and the Advocacy Act were inspired and built. These pieces of legislation arose from the documented and unfortunate need in our province for the rights of vulnerable individuals, including people with a mental illness, to be protected from professional and system abuse, neglect and violation. It is the rights of these individuals that need support. Legislation must recognize the tremendous power imbalance that exists in an institution, especially when a person is deemed incapable. Legislation should serve to create an environment which remedies this power imbalance.
The repeal of the Advocacy Act, and amendments to the Substitute Decisions Act and the Consent to Treatment Act are being rationalized as correcting system inefficiency and treatment delay. The absence of the Advocacy Act means that the vulnerable will remain vulnerable, and the replacement of the Consent to Treatment Act with the Health Care Consent Act makes it easier by law for people's rights to receive or refuse treatment, to appeal decisions regarding their own capacity to decide, and even to receive information about their rights and opinions and options to be dismissed.
We believe that the efficiencies which the government is striving towards can exist within a system of checks and balances that ensure protection of rights.
We don't want to create a community that does not allow health care practitioners to do the jobs they're trained to do. We don't want the quality of care to be compromised. But what we do want is to ensure that the understanding of what constitutes care includes caring about a person's right to choice and self-determination.
Thank you for your time.
Mr Marchese: Thank you very much for your presentation. I think your conclusion is perfect. You're not against efficiencies. What you have talked about and everything you've said here is that there needs to be checks and balances, particularly for those people who suffer system abuse, neglect and violation.
I didn't have time to ask you, but I was going to say that the stated purposes of the bill really are contradicted by the content, because when they say "to provide rules with respect to consent to treatment that apply consistently in all settings, to enhance the autonomy of persons and to promote communication and understanding between health practitioners and patients," it's really not happening when you look at all the things that you've said; is that true?
Ms Lowe: Yes.
Ms Smith-Fowler: That's our concern.
Mr Parker: Thank you very much for your presentation. In the minute available to me, I just want to make one point that I hope will give you some comfort. In the second paragraph of page 4 you express concern regarding section 50(2)2 which, in your submission, removes the ability of a patient who had previously granted a power of attorney for personal care to then be able to revoke the power of attorney.
What I want to assure you is, that section does not have that effect. The existing provisions for revoking a power of attorney remain in effect. What this particular provision does, however, is it gives the grantor the option to make the power of attorney survive any subsequent expression of desire to revoke it if he suffers from a particular case -- the type of thing we've been talking about, where somebody slips in and out of a mental condition. He has the option to say up front, "If I subsequently lose my faculties and I insist on revoking my power of attorney, I want you to ignore that instruction."
Mr Ramsay: Thank you very much for your presentation. Looking back at the couple of paragraphs on determining capacity, it's certainly shocking to me and to my colleagues that as we do talk about the Consent and Capacity Board and the appeal mechanism that gives, we're still quite shocked that the patient, once a finding has been rendered, does not have to be told of his or her rights.
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Mrs Caplan: Or the finding.
Mr Ramsay: Or the finding itself. We think that really has to be in the act. I'm glad you touched upon that in your summary.
The Chair: I thank you for your presentation. Your time is up.
Mrs Boyd: Mr Chair, on a point of order: I was just wondering if you could ask our researcher, Susan, to provide for the members of the committee the recommendations that flow out of the report of Dr Ernie S. Lightman, A Community of Interests, the report of the Commission of Inquiry into Unregulated Residential Accommodation. I would like to ask that we all read the whole report, but it's very large and I don't think that's very realistic. But the recommendations certainly which came out in 1992 were very important in terms of some of the issues that have been raised.
The Chair: Is there any objection to that? No? Sounds like a good idea to me, too. Thank you. We'll get that.
Mrs Caplan: Also, while we're at it, the other report that was mentioned here, the Ernst and Young --
Mrs Boyd: Yes, the Ernst and Young domiciliary hospital report.
Mrs Caplan: -- if there is an executive summary to that, and also if the government's prepared to let us know what the status of that is. Since it was raised at committee it would be helpful to have an answer for them.
The Chair: Perhaps you could raise that with Mr Parker here. Now, we're taking up Mr Tennant's time, and that is not fair to him.
STEVE TENNANT
The Chair: The next submission will be the Tayside Community Options, Steve Tennant, board member.
Mr Steve Tennant: Thank you. I'll apologize firstly. We're all trying to deal here with mechanisms, and my mechanism, the photocopier, died last night and so I was only able to provide 10 copies. In the spirit of sharing, let's do it.
Thank you for the opportunity of speaking to you today about my concerns regarding Bill 19.
It will be four years ago tomorrow that I first spoke to the standing committee on advocacy, substitute decisions and consent to treatment. It seems incredible to me that after all this time the number of investigations, hearings, reports, writing of bills, parliamentary debate and the passing of same, I am here again to try to get across the need of accessible, consistent, legislated advocacy for all vulnerable people in this province.
This all began because it was realized there is a segment of our population that is at risk of not having their rights to the dignity of personal choice respected in any multitude of scenarios, of falling through the cracks, of being victimized.
Governments may change, but the needs of these people do not go away. They may not be a segment of the population that is going to sway an election, so there are no big votes to be won or lost here, just morals, scruples, principles and ethics. There is a statement roughly interpreted that says, "Society is judged on how it supports its least able." Given this, how will we be judged when we take away the Advocacy Act, replacing it with nothing more than what was there previously, the same big cracks for people to fall through that are getting even bigger with government cutbacks to social infrastructure?
From all the reports that were completed prior to the decision on the current Advocacy Act, notably the late Father Sean O'Sullivan's report, You've Got a Friend -- A Review of Advocacy in Ontario, and the Fram report by Mr Stephen Fram, the strong message indicated was that a working, provincial advocacy system must be in place before the Substitute Decisions Act and Consent to Treatment Act were put in place. It was seen as essential to ensuring that people are not made victims of even more bureaucracy without representation or the awareness of its availability.
It's interesting that the Consent to Treatment Act and Substitute Decisions Act were seen as slowing down the medical and legal processes of the country, so have had changes made to supposedly simplify their workings. Why is it then that the resource seen as imperative to go with these acts, the Advocacy Act, has been repealed -- not repaired, but repealed -- with no replacement? Bureaucracy carries on but protection, the original intent of all this, falls by the wayside. Please do not tell me this is part of the Common Sense Revolution.
The adult protective service program, commonly known as APS, was originated by the Conservative government as a proven response to guardianship way back in 1974, and has grown to over 150 workers across this province. We provide advocacy and case management for adults with developmental disabilities. APS is seen by our overseeing body, the Ministry of Community and Social Services, as a cost-effective program. We have indicated through our provincial organization, the Adult Protective Service Association of Ontario, to MCSS for years that we need to have some problems with service delivery for our clients corrected. These problems have also been raised on the floor of the provincial Legislature. Some are sponsorship conflict of interest, lack of legislated standardization, to name a few. Yet, to date there has been no response to our requests.
Meanwhile, this already existing program has proven itself, already provides advocacy as its mandate, but is being denied the opportunity of correcting its problems to more effectively work to support the adult developmentally disabled across this vast province. Even now there are areas of the province that have had the APS program discontinued and other areas that are suggesting placing the program with service-providing sponsors, clearly a conflict of interest. How also do we advocate for our clients with the Ministry of Community and Social Services, the hand that actually feeds us? Again it's a conflict of interest, but is this common sense?
I'm not suggesting our program is the total answer to the advocacy question. In attempting to support our specific population now we have waiting lists, and with cutbacks to our community supports they are getting longer each day. But with improvements to the program indicated earlier, the APS program could provide advocacy for the large segment of the vulnerable population we know locally as developmentally delayed.
It is interesting that the doctors and lawyers who have complained about being hampered by the acts have been able to have proposed changes made to the Substitute Decisions Act and Consent to Treatment Act less than two years after their enactment. Compare that to the APSWs who have been working within the system for 22 years and have been unable to get recognized and change fundamental problems that impair our ability to advocate for vulnerable adults of this province. There appears to be an imbalance in whose rights are being recognized and dealt with.
I have worked in several roles supporting people with developmental disabilities in many areas of the province for 20 years. During this time I have observed most that we forget that it takes time for someone to open himself up to you and trust you with his thoughts. It takes time to develop a rapport with someone and gain that trust so that you know what he may need your advocacy support in. The adults we work with have been so well-meaningly overprotected, they often lack the experience of making their own choices to the degree that they are able. Many would have been capable of directing their own lives, but now are dependent on the system for support, as they lack the confidence and self-esteem to follow their dreams and their desires. The more delayed someone may be, the longer it sometimes takes to understand where he is coming from. APSWs are a voluntary program in that we can only work with someone who wants our help. Yet often, if you've never made choices for yourself, why would you ever think of wanting an advocate? Being known in the community, being around programs and taking the time to talk with them can help, but it all takes time.
Ontario is incredibly vast and diversified, but when you look at a map, the majority of it is rural. I grew up in Toronto but I've been working as an APSW in Lanark county for 14 years and have come to appreciate the benefits of what we call community. Because I am raising my family and living in a community my clients live in, we see one another in the stores, downtown, at the park or recreational events. As a result, I know them and they are familiar with me, so the process of advocacy for and with them is often simplified. Families don't see me as a threat because they know me as part of the community.
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I've described this because I feel we've lost what this is all about: supporting and empowering vulnerable people. How can someone in Toronto or Ottawa advocate for one of my clients in Perth?
Let me share with you an example. An 18-year-old young man lives with his mother and her boyfriend. He is physically handicapped, has spastic movement, uses a wheelchair for mobility and has limited ability to direct his personal care. He is heard by a neighbour, screaming, "Stop hitting me, Mother!" The neighbour calls the OPP, as this is in a rural setting, who upon investigation found the mother admitting that he had chased her and grabbed her, so she started hitting him. Upon further investigation, speaking to the boyfriend and the young man's brother who sometimes lived there, the OPP were told that this was probably not a safe place for this young man to be staying. Mother stated she needed him there for his disability pension cheque. Service providers in the community reported that this same mother had threatened suicide previously if her son was not placed elsewhere for extended periods of time, and yet, when planning was put in place to have him moved elsewhere, she refused.
As a result, the police temporarily suggested he be placed in a relief bed site they sometimes used and they called the APS program. The OPP did not see the use in laying charges, as it was the son's word, which he was not able to present, against hers. But they realized there was a problem, so I made them aware of the new urgent investigations unit, UIU, of the public guardian and trustee's office. The OPP called and reported the case to them.
I followed this up with the UIU office, making them aware of my previous involvement. I felt this young man required a guardian, as he was unable to protect himself from the physical and financial abuse that his mother admitted to. Other support workers in the area supported my request. It remains unclear what the UIU office was willing to do to protect this man. His mother began challenging and coerced the UIU worker to allow her to keep approximately $100 of her son's $700 monthly cheque, giving the home where he was staying the rest of it to buy clothes for school. She in fact reneged on this promise and kept everything except $10, but no recrimination came from the UIU office.
Time dragged on, and when I requested who should sign school forms, it was indicated to me by the UIU worker that I should do a hand-over-hand X -- assist him in making an X -- with this young man, even though I knew he was not able to give informed consent. I refused, indicating to both the UIU worker and the supervisor that this was illegal. Even after letters of support from the director of social services, who knew the case, and the Ministry of Community and Social Services area program supervisor, no one came to visit either the young man or the mother, and without any further consultation he was returned to his mother's care. So far he has stayed in the relief home, but she has refused counselling, so he still remains potentially quite vulnerable.
I attempted to approach the Ombudsman's office on this young man's behalf, as I did not feel he was being properly represented at the UIU office, but was told by the Ombudsman's office that since this young man could not give me consent to speak to them, they could not take my statement of concern. I explained that he was mentally unable and this was why I was asking for a guardian to be put in place for him. This did not seem to matter. My complaint was not heard. So again this vulnerable young man was refused the support of the mechanisms actually put in place to protect people like him. That's quite a system.
How does this young man get assistance from the big bureaucracy? They made no attempts to visit him and get to know him or his situation. Yet, even though I knew the case well and had community approval for what I was requesting, I feel my role as an advocate under the APS program was not recognized or respected, so advocacy for this young man was compromised, in fact, by the system.
By giving workers like APSWs the tools to work in their own communities, much of the local advocacy could be completed avoiding the faceless bureaucracy so often unnecessary.
There are some amazing families doing fabulous jobs at supporting their vulnerable individuals, but let us realize -- and I think you've heard this a lot today -- that not all of them are wonderful. For some families, the vulnerable person is a means to increase their income by the person's disability cheque, with little or no interest in what this person may wish to do or where they might wish to live or hang out. With some families, even the thought of suggesting the money from the individual's disability cheque should go to assist with paying for the wants and desires of that person is seen as ridiculous. Just living with them is seen as a privilege.
In this situation, how does the individual have his or her rights respected when the one calling the shots is the one putting the food on the table and is family? Studies around abuse show the most vulnerable are the most likely to be exploited, often by family, friends and neighbours.
I describe this because there needs to be an access and review mechanism put in place to observe how families or caregivers are supporting and respecting their relative's or resident's rights, not as an invasion of their privacy but, if anything, an affirmation that they are doing what is best for that vulnerable person. These are not easy choices, but ones that must be responded to for the best interests of the vulnerable persons who cannot speak for themselves or may not be given the chance.
It has been suggested that volunteers can assist with advocating for individuals, and this in its ideal concept sounds quite possible. In fact, though, I have seen only rare ones actually work. I say "rare" because this is what they are. If you talk to the volunteer segment of our communities, you will find volunteers are becoming fewer and more particular in what they do. I was on the board of our county Big Brothers/Big Sisters organization for more than 10 years, while also sitting on the provincial Big Brothers board, and from these experiences find volunteers are becoming harder to lure into supporting roles. Some of those in need of advocates are extremely hard to work with, so people who find rewarding experiences in this are few and far between. Training and liability issues are becoming larger concerns, as well as the lack of accountability for volunteers.
I have been trying through many channels to secure a person to visit a client I have who has no family and has required total care for six years now, and have yet to have any success. I will keep trying, but please understand this is difficult.
In summary, please remember these points:
(1) Society is judged on how we support our least able.
(2) It's one thing to remove the Advocacy Act because it is not working, but it was put in place for a reason and the reason is not going away, so other responses must be found to fill those gaps.
(3) It was previously recognized that the Advocacy Act must be in place before the Substitute Decisions Act and the Consent to Treatment Act. Why is this now being disregarded?
(4) The APS program is an existing, cost-effective way of assisting with this response. If you can make changes as needed to these other acts, you can also legislate the necessary changes to the APS program to better respond to its mandate, advocacy.
(5) Recognize that true advocacy takes time, and respect this in any of your planning. True advocacy takes time.
(6) Remember that the majority of this province is rural and has difficulty relating to urban bureaucracy.
(7) With all due respect, recognize there are some less than honourable families, so expecting everything positive from expanding their abilities to be involved may not be in the person's best interests.
(8) The most vulnerable are the most likely to be exploited, and often are by family, friends and neighbours.
(9) Volunteer involvement sounds great, but the reality is that to expect much from this is being very unrealistic.
(10) In conclusion, I recognize these are difficult times for you as government representatives to maintain fiscal responsibility. I do pray, though, that you do not see this as a dollars-and-cents issue because the lives of vulnerable people who deserve our support, in this caring community, and of our caring community, depend on your understanding and your ability to respond and cooperate. Please don't let them down. I thank you for your time.
The Chair: I thank you for your thoughtful submission, Mr Tennant. Your timing is impeccable; you used exactly your 20 minutes, so I thank you very much.
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KEN HRANCHUK
The Chair: Dr Ken Hranchuk. Welcome, doctor. You have exactly 20 minutes, including questions.
Dr Ken Hranchuk: My presentation today closely reflects the contents of my written brief. I have an overriding concern that all persons in our province have the right to receive the most effective treatment, regardless of their level of functioning, either physical or mental.
Specifically my support for the removal of section 66 of Bill 108 goes beyond allowing the most effective treatment for life-threatening, self-injurious behaviours in persons who cannot consent to such treatment. If that section were to become law, it is quite possible that other effective treatments could, in the future, also be disallowed for those unable to consent to treatment.
For example, I work with numerous children who demonstrate a variety of self-injurious behaviours across the eastern Ontario region. My therapeutic interventions include all the positive non-aversive procedures available to me as a professional in the field. However, on occasion, purely positive interventions are not sufficiently effective in decreasing some intense high-frequency, self-injurious behaviours.
I'm not sure the general population is aware that there are individuals in our society who demonstrate such severe self-injurious behaviours that they are life-threatening. In my personal caseload, I've dealt with young children who eye-poke; they'll shove their finger up their eye socket to the point where retinal damage is of concern. I've worked with many children who severely ear-slap, resulting in mushrooming of their ears and damage to the tissue around the ears and resultant infections.
I've worked with many children who are self-biters, a very serious condition that results in the breakage of the skin and is also dangerous in terms of infectious diseases. I've also worked with many children who are head-bangers. I hate to use that term but that's the best way to describe it, and there can't be anything more disturbing than to see a young child who looks as normal as most children embarking in such severe behavioural patterns.
What we do know is that early intervention in these children, across environments where these behaviours occur, can prevent a life-long disorder from disrupting that young person's life. The treatment personnel and trained parent therapists I work with have found that minimal physical restraint can be used effectively in young children with serious self-injurious behaviours, and it can result in the elimination and the continued reduction and maintenance of that elimination over time.
Minimal physical restraint is a simple procedure whereby a parent or a trained therapist will take a young child's hands and hold them to his side and wait until he's calm and then release him. Then, of course, at that point there would be the commencement of numerous positive training programs that would kick in to teach the child that he or she can get attention without having to be self-injurious.
If Bill 108 had been implemented, it could have set a precedent that might have led to things like minimal physical restraint also being disallowed in the future by preventing parents from consenting to treatment for their children who are unable to do so. This is not an exaggeration. There are a number of states in the United States that now have passed laws preventing such things as minimal physical restraint. The problem with that is that there are no alternatives presented. Of course, many people who are advocating against these techniques have the children's self-interest in mind.
There's no question that our field is a controversial one and that many people, in advocating against these techniques, are doing so because of their love for their children. but they must be responsible in making sure that the families and the therapists who are confronted with these severe behaviours have alternatives. If not, we have to look to what is most effective at this point in time.
If that were to happen, I can assure you I know many parents who would not allow their children to continue to embark on serious self-injury and would employ minimal physical restraint procedures if necessary in their home or whatever. That would mean they would be breaking the law and I think that's something serious to look at.
A related concern of mine is that people with developmental delays and persons with autism are not protected from interventions that are clearly scientifically proven to be ineffective. This is not an issue today, I don't think, but I do believe it's something that should be considered as also potentially intrusive or aversive. I'll give you a good example of that.
For about the past six or seven years, a procedure known as facilitated communication has been employed with this population. This is a technique whereby a facilitator, a so-called helper, takes the individual's hand and guides the hand and the consequence of that is that the target person now has some control of some sort and can spell out words on an alphabet. As of today, there are upwards of 25 soundly designed experimental pieces of research showing clearly that it is the facilitator who's doing the communicating. There has been no research yet to indicate why it's the facilitator. It wouldn't appear that people would intentionally do such a thing to a person who is unable to speak. However, that still has to be determined.
This is still going on and that means there now are people out in our society who have received this form of communication, if we can call it that, for four or five years. I don't know if you have read recently in the Toronto Sun of a case where a family was put through extreme stress, a costly process, and ended up coming forth with an $8.5-million lawsuit against a variety of people, including educators, police forces and others, and that particular case was settled out of court.
When we look at that, there are many other examples of people who are subjecting our developmentally delayed and autistic population to unfounded treatments for extended periods of time. If a young man has been receiving facilitated communication, or a young child has been receiving that intervention for four or five years, that has serious implications.
We know very clearly that the earlier the intervention in that particular population, the more likely we'll be able to perhaps reach some sense of normalcy, if not normalcy itself in some rare cases. That also means that during that time, that person has not received effective, scientifically sound treatment. I, in my opinion, consider that to be intrusive and potentially aversive as well. The thing about that is that the individuals cannot consent not to receive such a form of treatment.
It's unfortunate that many of our most effective treatments are somewhat intrusive and in some cases aversive. There's no question that surgery that might require amputation to save a person's life is extremely aversive to that person. Drug treatments for physical and mental problems have serious side-effects in some cases that can lead to permanent physical damage in people.
Defibrillators are used in cardiac arrest. They generate high, intense voltage of electricity in order to save a person. Faradaic stimulation, applied effectively with well-controlled standards of practice, has been shown to be effective in reducing serious self-injury. Electroconvulsive therapy, which has as its intent degeneration of a convulsion in a person in order to treat depression, is acceptable in our society. Interestingly enough about electroconvulsive therapy, people's rights can be taken away from them through the Mental Health Act in order for such treatment to be applied.
My last point is that these interventions are default technologies. This is a term that comes from my field of applied behaviour analysis, because we're so overly concerned about what we have to do in some cases to prevent life-threatening behavioural patterns or serious tissue damage or bone breakage.
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A default technology exists because there are no other technologies or therapeutic interventions at this point in time in our history that are effective enough to reduce the problem. We have to look at that seriously. We must continue to research both experimentally and applied in every way possible that we can so that we don't have to use default technologies. If we found ways of preventing physical disease at early onset, we wouldn't have to do things like remove lungs because of smokers. If we could find effective ways of identifying manners of reducing self-injury in young children at an early age that were rapid and non-aversive, then we wouldn't have to deal with situations such as the ones I'm sure you're familiar with in Ontario at this time at Southwestern Regional Centre.
I don't have any other points. I'm open to any questions and I'll try to be as informative as I can in assisting you in maintaining your stance with Bill 108.
Mrs Caplan: Do you believe there should be any regulation or standards applied to the usage of aversive therapies?
Dr Hranchuk: Oh, absolutely. I would hazard to say that I think the program at Southwestern Regional Centre is better controlled than any other program in Ontario.
Mrs Caplan: I agree with you and I think there are those standards in the Community and Social Services Facilities, and I know that Southwestern Regional's the only place where faradaic stimulation is even permitted under the Comsoc facilities. As I read this legislation, faradaic stimulation, other aversion therapies dealing with shock therapy, but certainly shock therapy, as it's called, faradaic stimulation, would be permitted in any office of anyone who was under the Regulated Health Professions Act or in fact, as I read it, anyone who felt they were providing treatment within the context of this legislation.
Dr Hranchuk: That should be corrected, because I certainly, as a professional psychologist trained in this field and on occasion having to use mildly aversive strategies like restraint, would not embark upon utilizing faradaic stimulation.
Mrs Caplan: Would you be comfortable if there was a clear restriction in this legislation that it be within a Comsoc facility, for example, or that we find some way of making sure that our psychologists could not provide this in their offices?
Dr Hranchuk: I would highly support that.
Mrs Caplan: That's the concern we have, that this opens it up in a way that does not ensure it only takes place in a regulated environment. In fact, the other suggestion was that as to this shock therapy for the last-resort treatment of those individuals that you recommend, another option would be that you require approval from the Consent and Capacity Board. That's another option to control it only for those special cases.
Dr Hranchuk: I'm a member of the board of directors of the association for behaviour analysis. I'm not speaking on behalf of that organization, but I can tell you that part of our concern is the regulation of the application of any behavioural procedures. Behavioural analysis has been misused, not necessarily by behaviourists but by a variety of people out there who feel they can write little recipes and proceed and alter human behaviour without any sense of responsibility. I'm part of a committee that's specifically addressing standards of practice, what is applied behaviour analysis and who can do it. So we're ahead of you in that sense, because as professionals we are very concerned.
Mrs Boyd: You premised a lot of what you said on the fear that having this prohibition in the act as it was in the original act would lead to other prohibitions. I'm sure if people did not understand exactly what was involved here, they would get very confused around the kinds of things you were saying. No one was ever suggesting that the kind of mild restraint you say you say you would use -- you said very clearly you yourself would not use faradaic stimulation.
Dr Hranchuk: Right. That doesn't mean I wouldn't refer someone to that program.
Mrs Boyd: Part of the problem that certainly we had when we put the original act into place was that there were all sorts of presentations to us about how this as a method ought to be expanded, that it ought to be available anywhere, that this worked and therefore it ought to be available. This is a real problem, because you're quite right, there are parents who, faced with the very serious difficulties that some of their children have, would accept almost anything as relief. It was certainly our concern that this was not necessarily in the best interests of the children, that the kinds of methods you have talked about using might not necessarily be used first, because they don't work as quickly; it takes time to change that behaviour.
Dr Hranchuk: I can't speak to who it was who was suggesting that it be expanded. However, I can assure you that as behavioural analysts, we're not seeking out people with severe self-injury. There's no consideration I'm aware of whereby somebody is advertising that we have this program. We're sitting back as responsible professionals servicing those who have come from other places and environments where that service, or whatever the intervention was, was ineffective.
Mrs Boyd: The reality was that in fact the suggestion was made on the part of the researchers cum treatment experts at Southwestern Regional that this ought to be in much more widespread use, that the restriction of this to four children initially -- and incidentally, I would challenge your comment that this works, because I think experimentally the research shows that it works in only very, very limited cases. I think that you should know that indeed there was a desire to have this much more available and indeed a justification for its use and its quick use in terms of a quicker solution. So you need to know that.
Dr Hranchuk: I think the rationale for the increase of any therapeutic technique should be based upon need and scientific demonstration of effectiveness.
Mr Ed Doyle (Wentworth East): Thank you for coming today. I'd like to point out, first of all, that we are going to be able to restrict faradaic therapy through regulation. I don't know if you were aware of that, but that is included in the changes we're proposing. There's been some dispute in different presentations that we've had as to just how serious a shock we're receiving here. We've heard various views on this. One view was that it was no worse than walking across a carpet and touching a finger against something metallic, and we've heard other views that it could be as bad as receiving an electrical shock from a socket on a wall.
Dr Hranchuk: The latter view I'm not aware of. In terms of my information -- and I have extensive literature on the topic and I've read it carefully -- as the technology increases, the milliamperage decreases as well, so my understanding is that presently Southwestern Regional Centre uses between 3.5 milliamps and 10 milliamps for a brief one fifth of a second. Now, that's a little more of a milliamperage than is required than to generate a pacemaker. Again, I shouldn't be speaking for that program, because that's not my right, but I'm just reflecting to you what I see from what I've read in the literature, and I have no reason to doubt that literature.
Mr Doyle: Because we have some difficulty in trying to grasp just how bad a shock people are receiving here.
Dr Hranchuk: I do know it's an open-door policy, and the first opportunity I get to go there, I will subject myself to it so that I have a fuller understanding of it.
Mr Doyle: I was wondering just how much freedom a person would have to find out about this himself or herself.
Dr Hranchuk: It's an open-door policy, as I'm aware.
Mr Doyle: For example, if I had a child and it was recommended to me that this child be perhaps given that treatment, I would have the opportunity to try it myself?
Dr Hranchuk: I am aware of one case, and I do believe you've also been presented with that case, where the parent was subjected to it and did considerable research beforehand. I'm also aware of cases in the United States where there have been legal ramifications because parents weren't informed that this was the most effective treatment available and their sons and daughters had gone through long periods of serious self-injury without being informed of faradaic stimulation as an option.
The Chair: Our time's up. Thank you, doctor.
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BROCKVILLE PSYCHIATRIC HOSPITAL PATIENT COUNCIL
The Chair: The Carleton Disability Awareness Centre had an emergency and their representative had to cancel out. We're proceeding to the Brockville Psychiatric Hospital Patient Council, which was slated for 4:40. Welcome.
Ms Linda Rheaume: I'm Linda Rheaume. My colleague Steve Thomas and I are here representing the Brockville Psychiatric Hospital Patient Council. It represents the interests of about 1,300 inpatients and outpatients. The hospital serves all of eastern Ontario, which has a population of approximately one million. It is the only provincially funded long-term-care facility in eastern Ontario. Both the forensic and psychogeriatric facilities in Brockville have seen growth over the last few years. The patient council is just beginning its second year of existence and is funded by the Ministry of Health. Our mandate is to improve the quality of life of patients and to do systemic advocacy.
I'll now tell you about my credentials. I am a manic depressive with a long and serious history of sexual abuse. I've been hospitalized in London, England, and three times in hospitals in Ontario. Until 1994, I was employed at a salary of $46,000. All my experiences in hospital -- when I went in, while I was working and even after I stopped working -- were traumatic. There was some physical and sexual abuse. There were some life-threatening problems regarding the wrong mix of medications. On the whole, I believe in the medical model. I believe that psychiatrists have helped me and that they will continue to help me.
Mr Steve Thomas: I was first hospitalized in 1973 when I was 21 years old. Since then, I've been in and out of hospital. I've spent most of my adult life inside, more than half of it, and presently I'm receiving outpatient treatment at the Royal Ottawa hospital.
What is the social, economic, medical and demographic contest in which consumer-survivors find themselves? In 1996, it could not be worse, and it is unlikely to get better soon. We haven't had an increase in FBA in over four years. What causes mental illness? Is there any way to treat it at a lower cost? Psychiatrist do not have all the answers. For some disorders the cause is thought to be a genetic predisposition or birth trauma. Triggered by stressors, such as reduction in welfare cheques, loss of work, low self-esteem, inadequate housing or homelessness, the illness blossoms.
Ms Rheaume: The problem at the outset is not that patients have too many rights which have to be clawed back; rather, the problem is that budget-cutting and downsizing is reducing services at too fast a rate without proper consideration of all the elements and arguing among all the stakeholders. So the psychiatric bed space now is dangerously low in Ottawa and in Brockville. Many of our friends have been unable to access hospital beds in times of crisis due to bed closures. They went to emergency -- these are our friends -- with such things as intermittent hallucinations, suicidal ideology or the onset of uncontrollable urges to become violent with a family member. They were turned away.
Mr Thomas: The movement for care is to the community. But there is no money to provide or replicate the services that disappeared from the hospitals. Bill 19 is a misguided attempt to redress the problem of lack of services by restoring illegitimate powers to doctors and family members. These attempts will backfire, and homelessness and crime will inevitably increase and lead to more expenses elsewhere in the system. Long-fought-for advances in the civil rights of the mentally ill are being thrown away. It is unlikely this will occur peacefully. There will be more aggressivity on the wards and in the streets. It is ironic that in an era of disintegrating family structure, relatives, even distant ones, are being given more power. It is even more ironic that doctors will be given more powers and are absolutely absolved of any responsibility or liability in misuse of that power.
Ms Rheaume: I have an example of misuse of power. A physician did not like Mr Harris's omnibus bill. He then decided to identify Mike and Jim, his Minister of Health, as having various behaviours and conditions which led him to report them to the justice of the peace. This caused this next step that they were to be assessed. They were ordered for assessment under the Mental Health Act. This was an abuse of the rights of Mike and Jim. This was a doctor who had a political agenda and he misused the rights of someone. This happens every day, but Mike and Jim were in the newspapers. For us, the police arrive in the restaurant, at the office -- cuffs, shackles and we are taken to hospital by police car.
In an attempt to keep our 20 minutes short, although there are many issues we worry about, we'll focus on three only.
First, we disagree strongly with rescinding the positive advances that infused the Advocacy Act and Advocacy Commission. In a time when most mentally ill people in the community are in the community, and that's what the government wants us to do, why on earth would the government see fit to limit advocacy to the hospitals? This is criminal neglect of the most vulnerable in our society: the elderly, the handicapped, the mentally ill. There is no longer any bed space in the hospitals for the mentally ill. They are largely being relocated in the community, and one of the reasons is to save money.
The Advocacy Commission was a relatively inexpensive way -- $18 million a year -- to ensure that these people's rights were protected out in the community where costs would be and should be lower. However, there will be a great fallout, much more than $18 million, because of the bill as written. The Advocacy Act was done through negotiation, not confrontation and not expensive litigation in the courts. The Advocacy Commission had an arm's-length relationship with the hospitals and residences to prevent conflict of interest. I ask you, honourable members, who is going to fulfil that role now? To suggest family members and friends is fanciful thinking. Families of the 1990s have two jobs, adult children at home or are struggling with their own problems to find work. Many families, as you must know, although we don't like to admit it, have abandoned their mentally handicapped, mentally retarded or Alzheimer's relatives.
Mr Thomas: Second, the lack of liability for doctors and health care practitioners for mistreatment of patients is unconscionable. In the early 1980s, a patient at Queen Street Mental Health Centre in Toronto was murdered by excessive administration of Nozinan to subdue him. In Penetanguishene, in the 1970s and 1980s, LSD was routinely administered to patients to "break down their defences," as was Scopolamine, which was used by the Gestapo during the Second World War. A litany of cruelty and abuse was perpetrated in Penetanguishene in the name of treatment. I can attest to that, if you want details.
To remove doctors' liability for treatment opens the door to abuse. I'd love to sue Penetanguishene, but it would bring back too many memories. Witness the concerns in Hamilton expressed recently on the treatment of the brain-injured at the McMaster clinic. Cruel aversion therapy was being used on young teenagers. Please remember that despite protestations and advances, psychiatry is not a science like other areas of medicine. Expert psychiatry is closer to an art. The brain is still regarded as the last frontier of medicine. There's still a long way to go to get standardized diagnostic and clinical procedures to intervene successfully in the lives of many of the mentally ill.
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Ms Rheaume: On the topic of "Can I try aversion therapy before it is administered to my child?" I am now investigating on behalf of the civil rights group here in Ottawa the use of pepper spray. I asked the police, "Can I use it?" They said, "No. We have a regulation. We can't give it to you."
Our third major point: A person has no rights unless he or she is made aware of them, and a psychogeriatric pre-Alzheimer's patient or an overdrugged person who is only temporarily unable should not have all their rights taken away. It's quite beyond belief that this government would see fit to eliminate the rights adviser's role, and further to say that the patients do not have to be advised of their rights.
This opens the door to civil rights abuses of the worst kind, the forcible confinement and drugging of the fragile, suffering, downtrodden, disempowered and displaced. It is just one more regressive step in the treatment of the mentally ill and it takes us back about 50 years in the legislation that we've worked so hard for. Even criminals are advised of their rights and have habeas corpus. Unhappy relatives and patients are going to clog the courts with litigation.
Bill 19 as drafted is difficult to understand and interpret, open to very many different interpretations. Certainly I don't think I understand it as well as I could either, even with the help of a lawyer to go through it with me.
Mr Thomas: In conclusion, in this life health is all we have, and for the chronically ill, the physically handicapped with a mental illness, the developmentally delayed and the psychogeriatric patient, quality of life is most important. In light of everything we have said, we have four recommendations.
Ms Rheaume: (1) Slow down the pace of your deliberations. Consult with the customers of these health services. Talk to the developmentally delayed. Many of them can express themselves quite well. Talk to the psychiatrically handicapped. Talk to the geriatric people. Delay, please, the implementation of your legislation until you do those things.
Mr Thomas: (2) Make advocates independent of hospitals. Perhaps they could work for a charitable or not-for-profit organization.
Ms Rheaume: Or maybe you could privatize them.
(3) Mount a public awareness campaign to explain to family and patients about this new legislation. I came down on the bus today, and the man next to me turned out to be a lawyer who works for the government. His dad did his will just before the Advocacy Act came in, redid it again, and now I told him he's going to have to have his dad do his will over again. I was speaking to a very intelligent man who could understand at least that there were problems, but what about the rest of us?
Mr Thomas: (4) Assure all consumer-survivors that your government is committed to humane treatment and a decent quality of life for all citizens of Ontario.
Despite the lateness of the hour, we hope you will have some questions for us. Thank you for the privilege of appearing before you.
Mr Marchese: I want to thank you both for your presentation. Quickly, I agree with the idea that we should mount a public awareness campaign to tell families of patients about the new legislation. People need to know, and I think all governments should do that whenever a new law is passed but we tend to fail in that regard.
I agree with you and many have agreed with you that, "The patient has no rights until he or she is made aware of them," and you say, "It is quite beyond belief that this government would see fit to eliminate the rights adviser's role, and further to say to say that the patients do not have to be advised of their rights."
Most people who have come in front of this committee agree with you, and we hope that the changes will be reflected with respect to your experiences because if we don't write policies or bills based on the experiences that you are aware of, I'm not sure how meaningful those policies are.
You talk about the lack of liability for doctors, and I have to tell you a few people mention that.
Ms Rheaume: No financial responsibility for any treatment.
Mr Marchese: In Thunder Bay they said if a substitute decision-making person is liable for any breach of duty, why shouldn't doctors be as well.
Ms Rheaume: Exactly, and it's a criminal offence, not just a civil offence. It's a criminal offence.
Mr Marchese: I think it's a good point that you make.
The point that a previous speaker made about society being judged on how it supports its least able is really fundamental. It's a fundamental way of looking at how society should be governed, and that was an important saying. You support that very strongly, I would imagine. Is that correct?
Mr Thomas: Yes, and also I take issue with the fact that the Advocacy Act is being disbanded, because all these patients are being put in the community and there's going to be no one to advocate on their behalf. You rely on family and friends, but they're in a different city or they're alienated from you or they may be dead. Usually the parents of single children are much more elderly and they don't have any time or expertise in handling their children's affairs.
Mr Clement: Thank you very much for your presentation and especially the four points you mentioned at the end. Certainly this committee is spending four weeks, three of which are the consultative process, to hear from people such as yourselves, and I think some more knowledgeable and experienced colleagues across the aisle remember the weeks and months and years of consultations that have been part of this seemingly never-ending debate. But I thank you for adding your points of view on it.
What I wanted to concentrate on is something that I must confess is mystifying me. I think that you speak for persons who have experienced the evil side, if I can put it that way, of governmental institutions and how they can upset, perhaps forever, a person's life. Yet you have a lot of faith in an Advocacy Act which was creating another governmental institution, taking it away from individuals in the community, and I just don't understand the reasoning.
Ms Rheaume: If I could bring it to a personal level again, I'm a mother. I had to commit my son. He was committed as a manic-depressive because they thought it was genetic but it was drug use. I needed an adviser, an advocate, a lawyer, a friend, I don't know what. I was distraught. He was in for three months, and they made him worse, and he was dying, he was in restraints and he wouldn't eat. So from the parent's point of view, I'm not saying the advocate has to be a government person or an institution person; in fact I'm saying they shouldn't be an institution person. They could be a legislated private group.
Mr Clement: How far away are we from that right now, in essence?
The Vice-Chair: Mr Clement, I am sorry. We are going to have to move on to the Liberal caucus.
Mrs Caplan: An excellent presentation. Obviously your experiences were really important for the committee to hear, and I hope that the government is listening.
You raised something that really we haven't heard before, and that is just how difficult this bill is to understand. That's because the government opted to stick in one legislation that which before was dealt with in two separate pieces of legislation. The fact that they repealed the advocacy in there is something else, but this deals with consent to treatment, now under the Health Care Consent Act, Mental Health Act amendments, changes there, and under the Substitute Decisions Act you have both power of attorney and guardianship and it has nothing to do with wills.
It's so confusing for the average person, the average family whose lives are going to be impacted by this. They pick up this bill and try to read it with the different references. All you have to do is look at a section, and I can understand why you would say that it is complicated. I'm a legislator, and I can tell you this is the kind of legislation that has an impact on people's lives. They should be able to pick up the legislation and read it and understand it.
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Ms Rheaume: Elinor, can I interrupt for a minute?
Mrs Caplan: Sure.
Ms Rheaume: Steve, my colleague, feels I didn't answer this question properly. He would like to talk himself.
Mrs Caplan: Go ahead. Use the time.
Mr Thomas: I thank you for that. It's very obscure, and I think there must be a lot of Conservatives who are lawyers or something. There's not many common people could understand this legislation. The references made to the Substitute Decisions Act in the Health Care Consent Act almost negate the whole purpose of the Substitute Decisions Act, and it's totally ridiculous what's been done here.
In response to --
The Vice-Chair: Mr Thomas, I am sorry. We are going to have move on. The 20 minutes' time has expired and to keep on schedule, we have to go to the next one.
Ms Rheaume: We came in place of somebody else when we weren't ready. Can we just have another minute to answer this?
The Vice-Chair: I'm sorry. We are going to have move on. We have to keep to a very tight schedule. It wouldn't be fair to the people following you. But Mr Clement will address it outside.
Mrs Johns: Could I have a point of clarification? Protection from liability, section 28, is substitute decision-maker protection. I might have misunderstood that, but I thought someone said there was no protection from liability for the substitute decision-maker.
Mrs Caplan: For all volunteers. This act has the broadest protection from liability of any statute I've ever seen, Helen.
ONTARIO COLLEGE OF FAMILY PHYSICIANS
The Vice-Chair: Good afternoon. You will have 20 minutes for your presentation in which you may want to leave some time for some questions. You can begin any time.
Ms Cheryl Katz: Thank you. A hard act to follow.
I'm Cheryl Katz, executive director of the Ontario College of Family Physicians. With me is Dr Gordon Riddle, who is a director on the board of directors of the Ontario college. He's a member of the college and provides a broad spectrum of practice of care to his patients. Dr Riddle has a large component of elderly patients in his practice and a large nursing home component of patients in his practice.
Our purpose in making this submission today was to stress the need for flexibility and ease of administration in applying this legislation. We, as a college, became involved in the Substitute Decisions Act and the Consent to Treatment Act well into the 1980s. At that time the president of the college, Dr George Miller, was a strong advocate for the need for adequate protection of the mentally ill. Since that time, we have become very involved in this process.
We've now reviewed the amendments proposed in Bill 19 and, contrary to what has been said, we actually endorse the efforts of this government. What we find in reading Bill 19 is that in essence it codifies the common law with respect to consent to treatment and attempts to streamline the process of caring for the mentally and physically ill. As I said, one of our objectives in making this submission is to reinforce the vital importance of ensuring that the delivery of health care proceeds efficiently and effectively with the minimum of unnecessary delays and unencumbered by bureaucracy and administrative inflexibility. We do believe that Bill 19 is a step in the right direction.
We were pleased to see the concept of treatment fleshed out in the Health Care Consent Act and rationalized within the context of the bill to enable initial assessment of capacity, physical exam, history taking and care providing little or no risk of harm. We do believe it is in the best interests of the health care providers and of patients that significant efforts be made to provide education to health providers, as well as to the public, to allay the fears that have arisen around the issue of providing treatment.
To that extent, we absolutely endorse what was said moments ago, that there must be efforts at public education around this piece of legislation. We believe that it is often the case that there is confusion arising around tables, pieces of legislation. A lot of the fears arising out of that confusion can be allayed by a public education process.
We were also pleased to see the protection from liability in respect of the administration of treatment done in good faith with apparently valid consent.
Under the Health Care Consent Act there is no longer a requirement for a panel of three or five members to sit for every application being heard. The chair, under that act, is now empowered to assign a member of the board to sit alone with respect to a particular application. We believe that streamlining that process is a move in the right direction. We believe it is appropriate that the act goes even further, to eliminate some of the other requirements relating to the composition of the panel such as the expertise in applications involving capacity.
But in principle, we have a problem with the whole concept of the Consent and Capacity Board. We believe, in a word, that Bill 19 doesn't go far enough in terms of streamlining. We believe the board itself should be abolished. From the perspective of cost-effective and efficient delivery of care, we question the necessity of establishing this board at all. Experience tells us that establishment of administrative and quasi-judicial tribunals don't streamline processes, particularly where there is an unfettered right of appeal to a court which has the ultimate jurisdiction to determine questions of capacity, among other things. The decision to continue this board, albeit under a shortened name, is questionable. We recommend that the decisions regarding capacity to consent to treatment under Bill 19 be taken directly to the court to eliminate what we see as an unnecessary, time-consuming and costly middle step. In the interests of the public and the providers, it seems that with this kind of mechanism in place, the only people who are happy are the lawyers.
Dr Gordon Riddle: One of our biggest concerns in the past has been the case of patients suffering from serious mental illness being allowed to deteriorate because they were assumed to have had capacity to refuse treatment in the community. Formerly, no one had authority to treat these individuals until they became a serious threat to themselves or to others. With the passage of Bill 108, the Substitute Decisions Act, patients' needs could, for the first time, be met. We were pleased to see that under Bill 19, the scheme of substitute decision-maker was simplified and priorities among them streamlined.
Under this legislation, the public guardian and trustee is intended to be a substitute decision-maker of last resort. However, the need for treatment decisions can occur at any time. In caring for seriously ill patients, situations requiring a decision of the PGT do not pay homage to weekends or holidays; the PGT must be available and accessible at all times. We would strongly recommend that there be a duty roster to ensure that in such cases, a PGT is available to make the needed decisions. Time is of the essence. Availability of a PGT must be ensured. However, once accessed, the decision-making must be expeditious, with the minimum of delay. We would suggest that the process could be expedited if the office of the PGT had onsite, professionally trained health care providers. Such support could facilitate rapid decision-making by focusing issues and concepts.
At the same time, we also question the ability of case managers to operate effectively and efficiently. Once again, experience tells us that unless case managers are adequately trained and funded, this method of entry into the system can create a tremendous bottleneck. We would recommend elimination of case managers by the introduction of a streamlined approach whereby standardized forms and flexible protocols enable direct access to the public guardian and trustee in order to eliminate an unnecessary step.
We stress the need for flexibility in interpreting and implementing this legislation in the interests of providers and the public.
We applaud the repeal of the Advocacy Act as ill-conceived legislation. Health care providers enter this discipline motivated to help others and act in their best interests. The Advocacy Act assumed that vulnerable people need protection from health care workers. A new layer of bureaucracy was created in the Advocacy Act to respond to this perceived need. We endorse the repeal of this act. Although we feel that the repeal of the Advocacy Act is good, there is still a need for protection of incapacitated persons. An agency akin to the children's aid society which health care providers and others could contact might be considered to fill that role. We have seen instances of neglect and emotional, psychological or financial abuse of patients in nursing homes by family members.
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Our recommendations:
(1) Education of public and health care providers about Bill 19 to allay concerns.
(2) Abolish the Consent and Capacity Review Board to enable decisions to be made directly by the court, thereby eliminating a middle step.
(3) Public guardian and trustee to be available and accessible at all times.
(4) Decision-making by public trustee to proceed without delay; eliminate case managers; staff office of PGT with health care providers to provide necessary support.
We thank you for your attention and we'd be happy to answer any questions.
Mrs Johns: The Consent and Capacity Board -- I was interested in your philosophy of not having a board. We put that board there to have a quick, cost-effective ability for people to appeal decisions they didn't like. To go to a judicial body, as you suggest, I believe would be costly and time-consuming. I'd like you to comment on that.
My second question is about rights advice. As a doctor, as a health practitioner, I'd like to know what you believe is your obligation with respect to telling people they're incapable and what rights you believe you should be giving them if they don't seem to agree with your decision.
Dr Riddle: Under the current situation with the rights advice -- I'll answer that one first -- there is a whole document you're supposed to read to a patient which is incomprehensible to anybody who's incapacitated, and I don't know as it's comprehensible to the health care provider either, in most cases. But I do think the patient should be informed: "No, I don't think you're understanding what I'm telling you. I would like to be able to talk to somebody who can assist you in this so you can help understand it and we can have a better way of understanding what you need and what we believe would help you out." They certainly need to be informed that there's something needed, but I don't think you need to go into a long document that doesn't assist in understanding anything.
As to your other question, there's been some experience with the Consent and Capacity Review Board where they have been asked to intervene, and when doing so, they end up at the end of their discussions saying to the incapacitated person, "Do you accept this substitute decision-maker on your behalf?" and the person who is maybe paranoid or worried about what information they're going to receive says, "No, I don't want to have them." They've not gained anything. There is no one who's going to then take their role and help them make the decisions. They've come full circle and accomplished nothing. If that's what the board is going to do without actually making a decision, it's a waste of time.
Ms Katz: The experience we have seen with administrative tribunals or quasi-judicial tribunals is that in theory they make a lot of sense -- it is easier to go before a board of this kind than it is to go before a formal proceeding in a court -- but what happens is that an appeal is almost always launched to a court and in essence you're delaying the final decision-making process. In fact, you're incurring greater expense both for the system and for the litigants, the people involved. They're going to hire their lawyers; their lawyers are still going to appear before the boards. The boards have become formalistic, only now you don't have the rules of evidence to protect the interests of the needy. We look at the Workers' Compensation Board, we look at the Human Rights Commission; they're all boards and there are some real concerns with the decisions rendered and a lot ends up in court anyway. So I don't see that the theory actually plays out in practice.
Mr Richard Patten (Ottawa Centre): Thank you for your presentation. I gather your report talks about flexibility, less red tape, addressing some the cost issues. As to your idea of having a roster of public guardians and trustees who would be available, how would you see this being managed on a practical basis in an area?
Dr Riddle: There should be a central number or a regional number that you'd phone. Somebody could be contacted by pager almost within minutes so that something gets done right away, rather than waiting until the weekend is over, if you're on a holiday weekend, a long weekend. Somebody is in need of treatment; they're not life-threatened, they're not in an emergency, but they're uncomfortable and their situation might deteriorate if they don't get expeditious treatment. To have somebody there who's trained, able, equipped and ready to make a decision on behalf of the incapacitated person is what's needed.
Mr Patten: So a central registry to which institutions could plug into and there'd be one call. I'm moving quickly because there's another area you talked about, and I've experienced this and have had calls on this; that is, the abusive people who may even be guardians or named on behalf of an incapacitated patient, especially in terms of financial abuse. I wonder if you'd elaborate on that, because that's a mechanism that isn't really addressed here.
Dr Riddle: I work in three nursing homes and visit three others on an interim basis. In any of those you can find over time that there are people who have had their assets converted by a family member who is supposed to be their substitute decision-maker. Everything's sold, invested, whatever, and there's nothing left to pay the debts. They walk away; the parent dies and a $6,000 bill is outstanding and there's nobody around to collect from or take responsibility.
We've even had a case where a son believes his father's going to live to 120. He's 88, and he's been using curtains as toilet paper -- just to show evidence of his status -- and he's yelling at him to get up and get walking, get exercising and so on. Who do we call on who's going to come in and help protect this gentleman? We see the abuse, but we don't have a lot of authority. We try and run interference, but every time this guy was in a different institution, he had his lawyer on their backs because he was going to threaten this institution or that institution. There's abuse out there, and we need some form to help protect against that kind of abuse.
Mrs Boyd: I have to admit that I'm quite puzzled by your presentation in a lot of ways. If I look at the four recommendations, it would be hard to disagree with (1) or (3). In fact, I think (3) is the case; there are regionalized offices. I don't know whether the current government has cut back on the funding, but we had already set up some regionalized offices and an arrangement for people to be available 24 hours a day. If that's not happening, it was certainly always intended that the PGT would be available. I'd like some research done, actually, into the statistics that the PGT has had around calls and what exactly has happened there, because that's a very important issue and I think we should see it.
But the thing that puzzles me is that you talked just a moment ago about the need for someone to intervene in these cases, and that's exactly what the Advocacy Act did. It provided for people the opportunity to intervene when there was a situation. You would have someone to call -- the advocate's office -- who would then be able to do the investigation and protect your patient, yet you say you applaud the repeal of the act. I have a problem with that.
I think most of us think of our family physicians as being among our greatest advocates. Most of us believe that. Yet what consumers have said coming in front of this committee and in front of every other consultation has not been just suspicion of health care providers -- very seldom their family physician; mostly other health care providers -- but that these are the things they need. Yet as we go through here, all the things that consumers say they need most, you folks seem to be saying that you want this government to remove. That worries me, when I think of my family physician as one of my greatest advocates and one of the people I could count on to represent the vulnerable most effectively. I'm not sure what's going on, and I don't quite know how to respond to you.
Dr Riddle: We believe we are patient advocates. That's one of the things we're trained for and one of the things we endorse and want to carry out. The tone of the current legislation is that health care providers are to be feared. The tone seems to be, "Hey, these guys are something to watch out for, what they might do to you." I don't like to think we fit that role at all.
Mrs Boyd: I would say most of you don't. In fact, family physicians were among the people who came to us most desperate for solutions to the problems for their patients, whether they were facing abuse in institutions, whether they were facing abuse from their families or from their guardians, whether they were facing neglect because they had nobody. Those were all problems that were brought to us by family physicians. All the work that was put together in terms of the Advocacy Act, in terms of having substitute decisions available, getting case management of the PGT, all those things were in response to those kinds of problems brought forward by family physicians.
Dr Riddle: I personally haven't had a lot to do with it, other than one case where an advocate was speaking to a crowd of which I was a member. This fellow was reiterating how he was so badly abused in his youth, and he very clearly had an axe to grind and he was going to get back at those health care people for doing what they did to him. That's what makes people very apprehensive in the health care field, that if they're out to get us, we're not really going to be working effectively as a team. There's always going to be some apprehension, and that's not going to be very effective care.
The Chair: Thank you, doctors. The time is up. I appreciate your presentation.
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PSYCHIATRIC SURVIVORS OF OTTAWA
The Chair: Psychiatric Survivors of Ottawa, Mark Parsons, the advocacy coordinator. Welcome.
Mr Mark Parsons: Hi. How's everybody doing? Are you hanging in there?
The Chair: We're doing very well. You have the floor and may proceed at your convenience.
Mr Parsons: Thank you very much. My name is Mark Parsons. I work with the Psychiatric Survivors of Ottawa. I have a brief. Do I hand them out, or do you just want to listen to my wonderful voice and not read? That's an option; sometimes that's more helpful.
I work with the Psychiatric Survivors of Ottawa, a self-help, peer-support group that focuses on building voluntary, informal supports and advocating for changes in systems that affect the lives of individuals who have had and continue to have mental health problems.
I'm not an expert but a representative of the collective experiences of our membership. That is what I hope to bring to you today. All irrationalities and inconsistencies of thought are my own, and I hope there are at least some in here.
I plan to be short and to stick to my script.
Our immediate comment is that the changes proposed in Bill 19 peel back an enormous amount of discussion and debate in a very short period. The process the government has chosen to implement this plan seems to us inadequate to the task it sets itself. In the rush to divest ourselves of the Advocacy Commission, we are not looking adequately into the future of the services and the systems that are now being utilized. When looking at this legislation, we asked ourselves, does Bill 19 help implement the mental health reform processes that Ontario's last three governments have supported?
The issues we hope to touch on here are the role of rights advice in mental health -- what should it look like? -- and the role of vulnerable individuals as valid partners in the mental health system and their collective ability to participate in changes.
Other concerns, that I will not touch in this presentation but that we consider important, include the pruning of liabilities, for little particular overall gain, and the ambiguous use of language describing treatment.
The future goal of a reformed mental health system is to move resources from a treatment-focused approach with a few supports to a support-focused approach that is aided by treatment. Other jurisdictions where this has been attempted have reported developing a more efficient, focused and responsive system.
In brief, modern treatment, especially in psychiatry, attempts to take control over some of the basic neurobiological functioning in the hope of modifying distressing behaviours. Things need to be modified and changed.
Supports, on the other hand, rely on an individual's basic instincts for survival and adaption to live in their community, helping them to learn or to live through their sometimes poor choices. Nobody else will live their lives for them.
A key to allow future transitions from the community to the institutions and back to the community is a system that will be accessible, consistent, competent and understandable for the individual. Otherwise, the traditional solitudes of hospital and community will leave the system clogged and in self-competition.
Our system can at times choose not to serve our most needy and vulnerable citizens by focusing almost exclusively on the power of treatment within four walls instead of community supports. Treatment often consists of the ability to detain individuals for their own -- and sometimes the community's -- best interests, and the ability to dispense medications.
I had a discussion with a psychiatrist working in a provincial hospital once, known to be too honest for his own good, who informed me that he spent the largest part of his time acting as a policeman and most of the rest of it writing prescriptions. He seemed to me to be describing his role as being reduced from a figure of authority exercising best practices to a figure of power exercising his basic responsibilities.
Our current bill emphasizes treatment, the powers of treatment, the ambiguities of treatment and the minimized liabilities of treatment.
Expertise tells us that doctors-health practitioners are figures of authority, attempting, with the aid of expensive educations, to deliver best practices to an individual in their care. Experience tells us that doctors are often figures of power, obligated to fulfil the responsibilities of their powers.
If power is truly a substantive issue, we believe there is a need to balance that power with the power of clear knowledge allowing the individual to make an informed choice about the totality of proposed and possibly imposed treatments. Rights advice is still a necessary component of the Mental Health Act, and clarity, accessibility and consistency is still a necessary component of rights advice.
What is the goal of rights advice?
A friend of mine, wise in the ways of hospitalizations, not too long ago felt the need to challenge a psychiatrist's decision to keep him in an institution. The psychiatrist felt that treatment was necessary and that he needed to exercise his responsibilities and detain my friend in order to effect said treatment.
My friend, on the other hand, saw himself as a social being, not as a biological entity, having to meet the needs of an individual in the community. He was staying at the time in a city different from the city he had been hospitalized in, and he needed to effect changes to his living situation in order to have a place to call his own. Without fulfilling those needs, things would go badly for him, no matter how well the treatment went.
Expertise tells us to treat those in our care to overcome poor behaviours and bad choices. Experience tells us that we function in the community, at least 95% of the time anyway, and personal needs expressed in order to fulfil that role are at least equally important.
With a clear understanding of his right to challenge the treatment-detainment decision, he took it to review board and it decided in his favour. Apparently, expertise can be modified by experiences and the expression of needs. His knowledge of the review system helped him act upon his view of himself as a citizen with responsibilities, not merely as something to be corrected or managed. It is the accessibility and understandability of one's rights that allows individuals to project themselves as something more than a burden on the treatment system.
Overreliance upon treatment and little reliance on linking treatment to the greater whole we believe significantly reduces the ability of our mental health system to reorient itself towards supports. Four-walls treatments do not necessarily meet the needs of those most vulnerable and their community.
A member of ours, with a number of deeply felt anxieties and insecurities due to past experiences, could not bring himself to use the treatment-based health system. He relied on informal community supports like our own, his neighbours, his landlord, his mother etc, people who had little or no power over him. We could not arrange for more formal, ongoing community supports. There was no current availability, and because of the immediacy of his feelings it was difficult for him to get in line for them.
Unfortunately, his fears got the better of him one day and he decided to leave our fair city and travel. He stopped in another North American city, and without his informal support network, he was quickly institutionalized. No treatment they offered him worked. He knew this would happen because he had been treatment-resistant in the past. His increasing despair and fear caught up with him. He managed to run away and on a beach in yet another North American city his life ended.
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We believe, because the formal system offered him unwanted treatment and powerlessness and little else for his fears, his life ended more tragically than it should have. Our mental health system made it very difficult for him to make the choice of a mostly supports system instead of a mostly treatment option. The combination of volunteer organizations and conscripted volunteers of family and neighbours were inadequate in and of themselves to help him live through his sometimes poor choices.
Expertise tells us about history, best practices and responsibilities. Experience tells us about the here and now, individuals and the need to live their lives.
The need for vulnerable individuals to come together and provoke changes in the way resources are used to meet their needs and the community's needs are critical in creating, not a perfect system with a volunteer Polyfilla, but a system of process, change, responsiveness, individuality and continued trial and error.
Our deepest concern with the current legislation is that it projects the four-walls treatment mentality despite the fact that, in use, it is a small part of the whole. It provides little in the way of linkages or acknowledgement of present and future community supports.
Traditional liberal societies like our own, because of a belief in imperfect human nature, have generally sought to balance all powers that it can recognize.
We believe we need to balance the powers of detention, treatment, authority and expertise with the powers of rights, accessible knowledge, and the power to instigate changes on a community level when experience seems to dictate.
Mr Patten: Thank you, Mr Parsons. I can see that this means a great deal to you, and I thank you for coming today. When you talk about the balance, successive governments have talked about the process of deinstitutionalizing over time, as you well know, and providing more community supports. Some of the deinstitutionalization has taken place without the community supports being in place, and you address this somewhat in your paper. I have two questions for you, quickly because I only have two minutes. Could you be more specific on the nature of some of those supports? And what impact does having Brockville so far away from the Ottawa community have in terms of the community you're trying to represent at the moment?
Mr Parsons: Brockville -- what an issue. But to answer your first question, the kind of community supports we are looking at have been defined by mental health reform. There are many documents speaking on it.
It considers four priorities: case management; the ability to -- I hate the word -- support people where they live in a manner they choose to be supported; housing supports, finding the ability to choose housing in their community and keep that housing; peer and family supports, supporting their peers and building family supports. Can somebody please inform me of the fourth one? I can't remember now. I'm sorry.
These are the traditional answers to moving resources away from institutional to community-based resources. They help people live in the community, they recognize the need for people to be there and they do their best to meet their needs there.
The issue of Brockville: Brockville stands a good couple of hours away from Ottawa. All our long-term-care needs are supposed to be met by Brockville. In the short term, Ottawa meets needs, but in the long term, any needs of somebody who has extended health care needs, like psychogeriatric people, older people with psychiatric problems, or people who need long-term care on occasion are delivered from Brockville. They are very far from the community of choice, and we've had many, many discussions with the ministry about how to bring some of those resources to our community. It's been a very long discussion, and not a very fruitful one.
Mrs Boyd: Thank you very much for coming, Mr Parsons, and for sharing with us the views of yourself and I gather your self-help, your support group, because it is important for us to know. I'm curious as to whether you saw as one of the supports that would be available to you the existence of the Advocacy Commission, having advocates within the community, or whether in fact you have another vision of how to achieve that kind of advocacy support within the community.
Mr Parsons: We did support the Advocacy Commission's creation. It was an important option, we felt, to develop a consistent and open rights advice system and to develop ways in which to build the community so it could advocate for itself for changes and see that as a community process rather than a confrontational process. We felt that that would be a really good goal of the commission and that it was possible. I realize that the present government finds it as being something else, but we felt that it was a good response to meeting the needs of vulnerable individuals.
Mrs Boyd: So you are fearful, as we are, that the repeal of the act will leave yet another gap in what I gather from your presentation are many gaps now for people within your community who are survivors.
Mr Parsons: It leaves the gaps that were always there. The Advocacy Commission came in less than a year ago. We felt that it was the opportunity to build a support-based system, that that was a real goal of mental health reform and that it was there to ensure that was to happen. We reverted seemingly back to treatment-focused and looking back rather than looking to the future about what we want for the people who live in our community. The goal of advocacy was to develop a different role for our community and a different role for people to play by using both volunteers and paid rights advisers.
Mrs Boyd: And self-advocates, of course.
Mr Parsons: And of course self-advocacy was the key development initiative, yes.
Mr Parker: Thank you for an excellent presentation. You spoke very articulately and it's clear that you have put a lot of thought into your presentation and into these issues generally. I wonder if you could help us with one issue that we have been struggling with so far over the last week and a half.
Right now, in the present draft of the bill, there is no requirement that a doctor who determines that someone is mentally incapable actually advise him that he's been so found. That is not an obligation in the present draft. Some people have made the suggestion that that should be an obligation and it should be included in the terms of the statute. Others have suggested that that's improper, and there's been some discussion as to just how that news should be delivered, if it is to be included in the statute, just how directly the person should be told. The caution has been given to us that in some cases that might be harmful to the individual to be told that. The bad news would itself be a bit of a shock and it would be destructive to that individual. We've been told to tread lightly here and be careful how we proceed. I wonder if you have any advice on that whole subject.
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Mr Parsons: Well, being institutionalized is bad news enough. It's not going to be any less bad news to know you've been institutionalized formally. I mean, somebody has to tell them somewhere along the line that they have been detained formally, they cannot leave, and if they think that that's not correct that they have the right to challenge or to ask for an independent review of their detention in a facility. I don't see that as necessarily harmful, any more than the institutionalization itself. I think in the long run people appreciate being given the opportunity to know that, even though at the time they may not have found that all that helpful. I think people can respect what they've been told, if not in the present then at least in the future.
Knowing that a system is accessible and open allows people to use that system more fruitfully. Running away or being frightened of the system is one of the problems of the current system, and knowing that rights advice will be available when being detained by that system is a key element in taking away fear. You know, you do have the right to objective viewing of your situation, and I think that should be built into the legislation. I don't see why it shouldn't -- people should be given access to the knowledge that this has happened and what they can do about it.
The Chair: Thank you, Mr Parsons, for your thoughtful submission.
Mr Parsons: Thank you for allowing us to present. I'll thank my members for their input in this presentation and give them your thanks.
CITIZENS COMMISSION ON HUMAN RIGHTS
The Chair: Our next submission is slightly out of order. It will be Cathie Mann, the Citizens Commission on Human Rights. Welcome, Ms Mann. You're here early, so you must be eager. That's great.
Ms Cathie Mann: Less time to sweat and worry. It's like being called to the principal's office here. I don't know what you're going to throw at me after, you know? You know what I'm going to say.
My name is Cathie Mann. I am the director of the Ottawa chapter of the Citizens Commission on Human Rights, otherwise known as CCHR. I do this as a volunteer, and I appreciate having an opportunity to address you today.
I will start by briefing you a little bit on what my group does so you understand where I am coming from. I have been working with this group for 10 years now. In these years, I have met with, corresponded with and documented many cases of psychiatric abuse. So I have something to say about this particular group of vulnerable people.
I'm just going to diverge a little bit. I don't claim to be a legal expert and have all the solutions, but I do know what has happened in the past.
I realize there are many categories of vulnerable people, such as the elderly, those afflicted with AIDS, those who are sensory deprived and so on, but mental health is the area that I am most familiar with from the point of view of having listened to those that the system has failed. I want to tell you about some of the people I have heard from and worked with and some of the difficulties we have run into and why it is so important to have advocacy.
A young girl, 17 years old, went into the military about 15 years ago. She was sexually harassed and complained to her superiors. Nothing was done. She continued to complain. She was based in Winnipeg at the time. They flew her to Ottawa and put her in the National Defence Medical Centre. She was told it was for the estimate of damages both physical and emotional. It was also supposed to be for rest and to make a report of damages and an estimate of damages so that justice could be brought.
This did not happen. It was an assessment instead whereby psychiatric drugs were used before any assessment was even started. In fact, she was put straight on the psychiatric ward and put on drugs against her will and knowledge, having never even taken street drugs in her life before. She did not in fact even know the extent of the drugs she had taken until years later when she gained access to her medical files.
She was then flown back to Winnipeg and given a dishonourable discharge. She no longer has her trade as an aircraft mechanic and private pilot that she worked so hard to obtain while in the military. She is now on welfare and seeking justice.
Perhaps some rights advice and/or intervention, which she tried very hard to get during this time period, would have prevented this waste and saved the province some money. She knew she had rights, because she knew what happened wasn't right and was never given access or knowledge of a review board. It was bad enough that she had been sexually harassed, but then to be given psychiatric drugs and a label in answer to that was just more abuse.
Another example: A young girl, also approximately 17 years old, abused by her parents at home. Her mother used to drag her across the kitchen floor by her hair. What she needed was a good home, some love and understanding. In her case, she would probably have been better off with the help of the children's aid society.
She was put in a psychiatric hospital, given such strong medication that she could barely get out of bed, and when she did she sometimes had to hold on to the walls so she would not fall down. I also forgot to mention in here that she'd also tried to kill herself. She also received shock treatment against her will, suffers from memory loss and is unable to work.
I know these stories sound unbelievable. Until I actually started talking to people 10 years ago who had had psychiatric treatment, I didn't believe it either. What seems to have happened is that our society has become more and more dependent upon drugs, upon quick fixes. Compassion and human kindness is what we need. Actually, this is something I saw in the Advocacy Commission that was set up. Because these commissionaires, each in their own way, had been there, they cared and tried to do something about the situation.
I have noticed a very disturbing trend: The life expectancy rate for a consumer-survivor is much, much lower than for the average person. I know of at least five suicides in the past three to four years.
In one case, a man who had had a head injury as a child had been given psychiatric treatment. He did not feel this was warranted and proceeded to attempt to find scientific evidence to the contrary. He also participated in a drug study in an Ottawa hospital. I do not know what he was like prior to this, as I only met him after he had been in the drug study. He told me how he told them to stop. He told them he did not want any more drugs and how finally after the study was over he suffered the withdrawal from the drugs. He had no one to turn to, no advocates, and certainly in this case it would not have been a good idea to empower the nursing staff as advocates, as this would be a conflict of interest. Anyway, he had been in and out of psychiatric hospitals quite a lot, from what he has told me. He was terrified of being picked up and being put in a psychiatric hospital.
The last time I spoke to him, over a year ago, he called me from a hospital in Baltimore. He told me he was there against his will, and he sounded awful. He asked me to call his mother, which I did. It is thought that he went to the Baltimore area to see Dr Breggin, who is the author of several books, one of them called Toxic Psychiatry. Breggin is well respected in the consumer-survivor movement because he believes that people need love and understanding, not drugs and shock treatment.
Well, that was the last I heard from him. I got a call from his mother. He was dead. I called the police investigator in Georgia who was handling the case. They had figured out that he had taken the Amtrak down there, taken a bus, taken a taxi out to Jekyll Island, walked into the ocean and never came back. Had his rights been listened to and acted on, perhaps this tragedy would not have happened. I think he had finally had enough.
As you may recall, around 1994 the Ministry of Health put together the implementation planning guidelines for mental health reform. It is my understanding that the breakdown for funding for mental health at that time was 80% went to the hospitals and 20% went to the communities, keeping in mind that the percentages, I am told, were more like 60-40 in the Ottawa-Carleton area. What was going to happen over a 10-year period was that these percentages would reverse and there would be alternatives set up in the community, thereby putting people first.
The reason I am mentioning this is because I think that some sort of advocacy would be more and more needed and indeed help the ministry's vision become a reality. After all, why do we have a government? The purpose of a government is to bring order. You want to bring order so that people can live their lives, go to work, go home, raise their families etc. We need to have a vehicle that will help facilitate this shift and help people navigate their way around the red tape.
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I will give you a short example of what I have seen happen to a few people. After having had forced treatment and having decided to do something about it a few years later, when feeling more able to handle it, they went to the police to lay a complaint. The complaint was refused and they were referred to the College of Physicians and Surgeons. A complaint was laid with the college but not really followed up on except for a few brief letters saying it was being investigated. The person then tried to file a civil suit, had difficulty finding a lawyer versed in mental health law and so on.
We needs rights advice. We need a non-profit charitable corporation where at least some of the directors have disabilities. We need to strengthen the disability community. I think we have a responsibility to care about what happens to our fellow man. I think that in this way you can save and not waste money, because some of these disabilities that have been created could have been prevented in the first place. You don't have to believe me. Just look at the number of complaints the College of Physicians and Surgeons of Ontario receives every year. Thank you.
Mr Marchese: I just want to say that the case examples you give are very, very important, because we tend to lose sight of what we're really trying to do here at times. It's only by hearing these case histories that we realize what we're trying to do. We take the axiom of one individual who stated it as follows: Society's judged on how it supports its least able. If we can't support our least able in a way that protects them, then we as a society are not to be looked upon very, very favourably.
The problem is that we tend to forget that the reason why we put in place, the previous government at least, the commission and the rights advisers was to deal with these kinds of situations. Overall it may not solve all of them -- obviously one is aware of that -- but you need something in place. I agree with you when you say that governments are needed. This government says we need to get the state out of your hair, but if we do that, then who protects the people you spoke about? Would it be volunteers? Would it be the families? Would it be some other agency that has been out there in the past to do this work? Are they there?
This government says, "We might have something in place." I'm not sure. They talk about having something in place. I don't believe it, to be frank. But I'm worried about that. Are you worried about what would happen to people like the ones you described if we leave it to a system of having volunteers look after this or just families look after this, assuming that all families are good and assuming everybody has a family?
Ms Mann: I really wouldn't it want to be just volunteers. I really appreciate what you said. I was trying to give examples. These are very real case scenarios. Actually, I could go on for pages on things that have happened.
Mr Marchese: I'm sure you could.
Ms Mann: What I really see is some kind of a liaison where some of the community groups have some kind of access to maybe an official outside board of some kind when a person does go to complain -- obviously, when you're in a hospital you're at your most vulnerable -- where they have someone they can go to who can do something and has an authority to say, "Listen, this person hasn't had their rights complied with." When you're a volunteer, you're a volunteer. You're not recognized; you're a volunteer. So it does have to be somebody.
I do have faith. I'm not a political-type person. I tend to believe in whoever is honestly trying to do the best thing that's going to do the most amount of good and the least amount of harm. I think the Advocacy Commission was forging ahead, but that's not to say that another government can't come up with something as good or better. I'm not an expert in the area.
Mr Clement: The last comment should be a challenge to all of us to come up with something that is better and that works, and I thank you for that last comment.
One would not have a pulse if one was not affected by some of the stories that you have just shared with us. As politicians, the tendency is to then say: "Something must be done. I don't care what it is, but let's do something, anything." Please forgive me when I say we have to resist that to the extent that we have to do what actually will work. Sometimes governments do things because they just want to do something, and the law of unintended consequences means that tragedies are multiplied rather than solved.
I'm very interested in your second-last paragraph where you talk about the non-profit charitable corporation, which of course Mr Reville has been talking about. I guess I have two questions and I'll say them both at once. What's stopping you now from doing a non-profit charitable corporation? If the answer is money and provincial involvement, my second question would be, wouldn't it better to have a truly independent non-profit corporation that need not rely on government and need not be in any way directed by government?
Ms Mann: There are many non-profit charitable organizations actually operating throughout the province and throughout North America that have been trying to address this area. Most of them are support groups. But when you're a non-profit charitable organization, you're not a government official. If you go to the police and try to get some rights wronged, they'll send you elsewhere. I know this from experience.
If you don't mind, I want to just take this opportunity to tell you what I was really hoping for and what I was looking at. I was really happy a few years back when this mental health plan came out, because what I saw -- this does fit with this, right? If this were to happen, then there would probably be more consultations in the community. There would probably be some things set up in the community. I'm sure some people would be willing to volunteer their services and to tell what's needed.
The biggest problem of people coming out of a psychiatric hospital is getting off the drugs -- the biggest problem. Where do they go to? An ordinary physician is not prepared to handle that. There are a lot of things that need to be put in place, and I see advocacy as a beginning.
Mr Patten: Thank you, Cathie. I'd like to pursue a little bit as well. You make reference to one model that works with younger individuals, the children's aid society and the responsibilities they have when someone feels that something should be investigated and they immediately have a particular source. I would like to pursue the thought. Are there organizations that would not need to be set up totally but might be able to adopt that kind of a function, by reference, with the addition of some skill that may be in the legal area, at least a good understanding of the legal area and certainly a knowledge of the rights of individuals, but can build off of its strength and knowledge in the whole area of mental health?
Ms Mann: I think that's an excellent idea. A lawyer would be in the position where he could say and do something. I know that there are some lawyers who actually do have a problem. You have a hard time finding a lawyer who even understands how to fit the Mental Health Act with the rest of the laws, because a lot of the things that go on are things that would be considered to be assault in the ordinary laws but they're not an assault. Sorry, I don't know all the legalese on this, but when you take it and you look at it, somebody who's been forcibly drugged, that's an assault. I know that there are certain lawyers in town, one in particular, and he for a number of years has been working with people who have been in the psychiatric institutions. If he, for example, were empowered with that, that would help him a lot, because right now legal aid does not want to fund him fighting the psychiatric system.
The Chair: Thank you very much, Ms Mann. That completes your time.
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INTERVENTION DES SOURDS FRANCOPHONES ONTARIENS
The Chair: Mr Laurent Deguire will be presenting the last submission of the day. He is francophone and deaf. Ms Translator, could you give your name into the microphone so that we have that on the record.
Ms Monique Deguire: I am Monique Deguire.
The Chair: Thank you. You can proceed and translate to us what Mr Deguire would like to say to us.
M. Laurent Deguire (Interprétation) : Ça me fait plaisir de présenter mes idées. Je vais faire mes signes lentement, parce que mon interprète n'est pas professionnelle. Il n'y en avait pas de disponible aujourd'hui, malheureusement. Je pense que tout le monde peut comprendre qu'on va aller lentement. C'est important que tout le monde comprenne ce que j'essaie de dire en signes. Si l'interprétation manque trop, il va y avoir une mauvaise communication et puis ça va défaire le but.
J'ai six sujets à adresser. Premièrement, avant les six sujets, mettons un peu de contexte. Moi, je suis une personne sourde, pareil comme tous les autres personnes sourdes. Ça n'existe pas pour moi, une langue française, ni l'anglais. Ma langue principale, ma langue maternelle, c'est les signes et c'est différent d'une langue entendante que vous parlez. Les sourds ont un langage complètement différent. Votre langue des entendants, c'est ma seconde langue. Ma langue maternelle, c'est les signes et ma langue parlée, c'est ma deuxième langue.
La culture sourde communique avec des expressions corporelles et des signes, en images, en idées. Les signes, c'est une langue profonde en elle-même. N'oubliez pas qu'un sourd n'est pas capable de communiquer facilement avec un entendant, ni de prendre simplement un texte et de le lire. La lecture, tous les sourds sont faibles, ils ne sont pas capables de comprendre ce que ça veut dire, la structure de phrases entendantes. C'est complètement différent.
Maintenant, je retourne à mes sujets que je vais adresse, premièrement sur l'éducation. Il y a beaucoup de sourds qui rêvent de participer aux études à différents niveaux, étudier pour avoir la chance d'obtenir un bon travail comme vous-mêmes. Mais il y a un manque de services d'interprète à cause des manques de fonds. Mais le gouvernement provincial de l'Ontario transfert certains fonds à toutes les écoles, à tous les niveaux d'école pour supporter les besoins spéciaux, les étudiants avec des besoins spéciaux. Mais malheureusement, c'est trop cher pour les interprètes, c'est trop cher pour les tuteurs parce que les administrations personnelles des écoles qui sont autonomes coupent continuellement leurs budgets et disent aux personnes avec les besoins spéciaux, «Je regrette.» Moi, je suis bloqué puis je n'ai pas de futur.
Maintenant, les compagnies obligent tout le monde à avoir des diplômes. Moi, je n'en ai pas ; les personnes sourdes n'en ont pas. Alors, comment on peut entrer ? On est faible ; on est vulnérable. La langue est faible pour communiquer. Il y a souvent des personnes qui vont suivre la formation pour devenir interprète et qui réussissent le programme mais qui ne sont pas compétentes. Alors nous, les sourds, on perd notre but, nos rêves d'avoir un bon futur comme une personne qui est moins vulnérable, qui est entendante.
Une des preuves, il y a un article qui était passé au Citizen qu'un homme sourd essayait de suivre des cours au Collège Algonquin, et puis il n'était pas capable d'avoir des interprètes. C'est ça. Ils ont été coupés parce qu'il n'y avait pas d'argent et il n'y avait pas d'interprètes compétents.
La Commission des droits de la personne a de la difficulté à intervenir parce qu'à la Commission on ne connaît pas la culture et les problèmes, et le système qui est nécessaire pour les personnes sourdes. La Commission devrait avoir les compétences pour le système des sourds, comment ça fonctionne, la communauté sourde, mais ça n'existe pas. Vous, le gouvernement de l'Ontario, avez créé la Loi 4, le projet de loi 168 et aussi 114, je crois, au sujet de l'éducation, qui couvre aussi les sourds et l'interprétation en LSQ et ASL pour les sourds à l'école. On l'a créée, et partiellement c'est correct, mais pour le reste, non ; ça ne fonctionne pas.
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Les sourds sont frustrés. Ils savent qu'ils ont une loi pour les supporter. Ça, c'est aux niveaux primaire et secondaire. Ils ont des droits dans la loi pour supporter qu'il y ait accès à l'éducation dans leur langue, mais ce n'est pas toujours l'expérience à cause de l'argent. Les écoles refusent les droits.
Deuxième sujet : le système judiciaire, c'est grave. Souvent, la police arrête une personne sourde. Quand la police arrête une personne sourde et ne connaît pas les signes, ne sait pas communiquer avec la personne sourde, ce n'est pas des vrais signes ; c'est comme des mimes. Ce n'est pas la vrai langue des signes. Le sourd ne comprend pas et la police le met en prison. Des fois il doit attendre trois jours pour avoir un interprète sans savoir ce qui se passe parce que le sourd ne sait pas qu'est-ce qui se passe. Il doit attendre pour avoir un interprète trois jours dans la prison. Ce n'est pas normal.
Souvent, la police ne respecte pas la loi sur les handicapés, qu'il faut avoir un interprète pour une personne sourde. C'est important de savoir pourquoi on se fait arrêter. On n'a pas de raison. On ne comprend pas. C'est souvent. C'est un rapport qui a été fait par OAD.
The Ontario Association for the Deaf did a report and had some fact situations it was reporting. The one that Laurent was referring to is a deaf man who had been arrested and escorted by the police during a stat holiday. He had to stay in jail for three days until an interpreter arrived to interpret with him and the police to make the statement. The group questions why he had to stay in jail for three days for a very small reason.
Il y a plusieurs exemples, mais juste un résumé pour montrer qu'est-ce que ça veut dire.
Troisième sujet : service médical, les hôpitaux. Tout le monde qui est sourd a peur. Les sourds n'ont pas confiance aux médecins. Souvent, à cause des différentes langues, la communication est difficile et il arrive que le médecin donne une mauvaise prescription parce qu'il n'a pas compris ce que le patient, la personne sourde, essayait de dire. Le médecin n'a pas compris ce que la personne sourde essayait d'expliquer en tant que symptômes, de problèmes de santé.
Les sourds demandent souvent, «S'il vous plaît, un interprète.» Le docteur refuse. Le docteur dit, pour obliger, que je peux écrire. Mais le docteur lui-même est savant. Il utilise des mots qu'un sourd ne peut jamais comprendre. Ça ne marche pas, lire un texte écrit, et moi comme patient, je ne suis pas capable de m'exprimer pour que le médecin comprenne. Il n'est pas capable de me comprendre.
Aussi, souvent le docteur pense qu'un sourd peut être un malade mental et l'envoie a l'hôpital pour ceux qui sont handicapés mentalement. Un sourd n'a pas de problème de santé mentale. Un sourd n'est pas stupide. Un sourd est intelligent et visuel et il est capable de communiquer profondément en signes. On est capable de vivre, comme moi avec ma femme ; on a des enfants, nous avons une ferme. Moi-même, j'ai étudié en droit. On n'a pas de problèmes mentaux, mais souvent ça arrive qu'un médecin veut référer une personne sourde.
Les sourds des États-Unis et du Canada ont des liens forts entre les deux pays. Un patient sourd à l'hôpital, Jean-Marie Paré, une personne sourde lui-même, faisait une dépression. Il a perdu son travail et il a paniqué. Ils l'ont envoyé à l'hôpital Royal depuis 1984 jusqu'à aujourd'hui. Ce n'est pas normal. Il vivait. Il était découragé, il avait perdu son travail, puis ils l'ont enfermé à l'hôpital.
C'est un conflit avec les droits de la personne. Les sourds gardent des liens et observent beaucoup ce qui se passe aux État-Unis, parce que la population sourde est beaucoup plus forte et avancée. Ils ont peur aussi. Il y a eu un article, je pense encore dans le Citizen, où ils ont trouvé un homme de race noir qui était dans une institution mentale pendant 69 ans parce que l'homme est sourd et ils n'ont pas pu évaluer le problème ; ils l'ont juste mis en institution, puis finalement il est sorti après 69 ans. Ils ont découvert qu'il était simplement sourd. C'était le seul problème.
La population sourde étant visuelle, ça marque. Ça marque beaucoup quand ils voient quelque chose et ils deviennent craintifs, beaucoup. C'est déjà arrivé au Canada, ici aussi, a quelqu'un depuis 1984, et il est encore là aujourd'hui.
Aussi, c'est important de savoir qu'un sourd, ce n'est pas une machine. Ça veut dire, une personne sourde -- il y a un groupe qui s'appelle Colère-Sourds ici à Ottawa et en France. Les sourds sont beaucoup contre l'implantation cochléaire et se sentent comme des cobayes utilisés pour faire des tests, comme si c'était expérimental. Beaucoup de sourds ne sont pas d'accord avec ça. Ils sont humains et ils ne veulent pas se faire utiliser comme une expérience, un test.
The Chair: Mr Deguire's time is technically up. I will permit five more minutes. He understands that we are flying to London tonight and must make a plane.
M. Deguire (Interprétation) : Je fais un résumé. Tout le monde sourd est vulnérable et très frustré. Toutes les portes sont fermées. On n'est pas capable d'avancer. Il n'y a personne pour nous guider, intervenir pour nous, de notre part, parce que les sourds ne connaissent pas le système judiciaire, ne connaissent pas leurs droits. Ils n'ont jamais appris ; ils ne savent pas comment se défendre. C'est très grave comme on est ignorant sur le sujet. C'est très rare, quelqu'un comme moi qui peut un peu guider en droit ou sur le sujet. Je suis capable de lire de base. La population sourde était très frustrée et déçue qu'ils avaient fermé la Commission d'intervention, parce qu'ils ne savent plus où aller pour avoir du support de la direction. La Commission des droits de la personne n'a pas les compétences, n'a pas le temps, ne connaît pas la population sourde. Souvent ils n'ont pas de compétences dans le domaine.
Le gouvernement a écrit le Code des droits de la personne provincial. C'est écrit là-dedans que c'est interdit, la discrimination contre un sourd, mais je subis toujours la discrimination et je suis vulnérable. Ça continue toujours. Où est ma protection ? Il n'y en est pas. C'est très vulnérable. C'est sérieux. C'est comme une crise de vie. Les entendants sont confortables. Les sourds, 360 000 sourds au Canada -- je n'ai pas le chiffre pour l'Ontario. Je ne l'ai pas encore. Je vais le recevoir bientôt.
Je vous remercie. J'espère que vous allez réfléchir parce que nous avons besoin d'un intervenant. Le gouvernement provincial a écrit dans la loi sur les droits de la personne «sans discrimination pour les handicapés». Sinon, c'est inconstitutionnel. Merci.
The Chair: Could you thank Mr Deguire and tell him I'm sure that the committee has more understanding of the problems and challenges facing the deaf in our province.
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Mr Patten: Can I say something for just one minute? Je veux dire félicitations. Je sais que ça prend beaucoup de temps de dire les mêmes choses, mais avec une interprétation, ça prend plus de temps. Il me semble que vous avez noté essentiellement deux grandes choses : premièrement, à cause de la mauvaise communication, quelqu'un perd ses droits, et deuxièmement, vous avez suggéré une solution, peut-être un réseau, un bureau, d'avoir 24 heures par jour un service pour les gens qui ont besoin d'un service immédiat auprès de la police ou d'un hôpital ou d'autres situations d'urgence. Peut-être pourra-t-on en discuter après la session ici. Merci pour votre présentation.
M. Duncan : Je veux aussi dire merci pour votre présentation. Je veux indiquer que la discrimination contre les sourds est triste et que je regrette ces problèmes, mais je pense que la loi qui existe maintenant, selon les avocats, ne s'adresse pas à la question des sourds et la discrimination, la plupart de ce que vous exprimiez aujourd'hui. J'espère que nous pourrons avoir une opportunité de parler de toutes ces questions pour les sourds dans l'avenir avec un autre comité de la législature.
The Chair: Thank you very much. We're adjourned until 9 o'clock tomorrow morning in London.
The committee adjourned at 1727.