ADVOCACY RESOURCE CENTRE FOR THE HANDICAPPED
CONTENTS
Monday 15 June 1992
Advocacy Act, 1992, and companion legislation
Advocacy Resource Centre for the Handicapped
David Baker, executive director
Carol McGregor, president
Carla McKague, senior staff lawyer
STANDING COMMITTEE ON ADMINISTRATION OF JUSTICE
*Chair / Président: Cooper, Mike (Kitchener-Wilmot ND)
*Vice-Chair / Vice-Président: Morrow, Mark (Wentworth East/-Est ND)
Akande, Zanana L. (St Andrew-St Patrick ND)
*Carter, Jenny (Peterborough ND)
Chiarelli, Robert (Ottawa West/-Ouest L)
*Curling, Alvin (Scarborough North/-Nord L)
Harnick, Charles (Willowdale PC)
Mahoney, Steven W. (Mississauga West/-Ouest L)
*Malkowski, Gary (York East/-Est ND)
*Runciman, Robert W. (Leeds-Grenville PC)
*Wessenger, Paul (Simcoe Centre ND)
*Winninger, David (London South/-Sud ND)
Substitutions / Membres remplaçants:
*Owens, Stephen (Scarborough Centre ND) for Ms Akande
*Wilson, Jim (Simcoe West/-Ouest PC) for Mr Harnick
*In attendance / présents
Clerk / Greffière: Freedman, Lisa
Staff / Personnel: Swift, Susan, research officer, Legislative Research Service
The committee met at 1552 in room 151.
ADVOCACY ACT, 1992, AND COMPANION LEGISLATION / LOI DE 1992 SUR L'INTERVENTION ET LES PROJETS DE LOI QUI L'ACCOMPAGNENT
Consideration of Bill 74, An Act respecting the Provision of Advocacy Services to Vulnerable Persons / Loi concernant la prestation de services d'intervenants en faveur des personnes vulnérables; Bill 108, An Act to provide for the making of Decisions on behalf of Adults concerning the Management of their Property and concerning their Personal Care / Loi prévoyant la prise de décisions au nom d'adultes en ce qui concerne la gestion de leurs biens et le soin de leur personne; Bill 109, An Act respecting Consent to Treatment / Loi concernant le consentement au traitement; and Bill 110, An Act to amend certain Statutes of Ontario consequent upon the enactment of the Consent to Treatment Act, 1992 and the Substitute Decisions Act, 1992 / Loi modifiant certaines lois de l'Ontario par suite de l'adoption de la Loi de 1992 sur le consentement au traitement et de la Loi de 1992 sur la prise de décisions au nom d'autrui.
The Chair (Mr Mike Cooper): I call this meeting of the standing committee on the administration of justice to order. Today we will be proceeding with the second round of public hearings on advocacy bills: Bill 74, the Advocacy Act, 1992; Bill 108, the Substitute Decisions Act, 1992; Bill 109, the Consent to Treatment Act, 1992, and Bill 110, the Consent and Capacity Statute Law Amendment Act, 1992.
First we have a couple of announcements. The House leaders have agreed to let us meet starting at 3:30 over the next two weeks, whether we're out of routine proceedings or not, because of the number of presenters we have coming in to make presentations again.
Second, there was a question from Mr Sterling, I believe, that was asked quite a while ago of the Ministry of Citizenship. We now have the answers to that and they will be handed out to the committee members.
Also, the research we've asked Susan Swift to do for us is not complete today. Hopefully it will be complete tomorrow, but the computer network has been down. I hope it will be fixed before tomorrow and we'll have that prepared for the members of the committee.
ADVOCACY RESOURCE CENTRE FOR THE HANDICAPPED
The Chair: At this time I would like to call forward our first presenters, from the Advocacy Resource Centre for the Handicapped. Good afternoon. As soon as you're comfortable, could you please identify yourselves for the record and then proceed.
Ms Carol McGregor: My name is Carol McGregor. I am the president of the Advocacy Resource Centre for the Handicapped. With me is Carla McKague, the senior staff litigator, and David Baker, the executive director.
The Advocacy Research Centre for the Handicapped, more commonly known as ARCH, is a specialty legal aid clinic that was established 12 years ago to promote equality rights of people with disabilities. ARCH is comprised of 43 member organizations with a membership mainly of people with disabilities. One of the main criteria for joining ARCH must be that an organization supports the principle of self-advocacy for people with disabilities. This membership obviously supports the Advocacy Act, and that is why we are here today.
We believe there is no doubt between all three parties that this is not a partisan issue: From the Tories under Roy McMurtry who appointed Rosalie Abella to conduct a report, and who then appointed the Fram committee which established the first model on advocacy; under the Liberal government under Ian Scott, Father Sean O'Sullivan developed the Advocacy Act legislation; and in April 1991 the NDP government introduced the Advocacy Act legislation in Ontario. We are still waiting for this legislation.
We congratulate you, however, on the fact that all parties have finally come to an agreement to introduce the legislation in one month's time, following yet again another round of public hearings. We are happy with the amendments; we support the amendments. We hope they do clarify and make other opposition members understand some of the more technical aspects of the legislation. But for people with disabilities, this legislation is a necessity and it should be a right. We need to have this type of protection. We need to have legislation and we need to have it implemented immediately.
I'm going to ask David Baker to perhaps provide you with more of the technical background.
Mr David Baker: I'd like first to talk about one particular case in which ARCH was involved some years ago, which in many ways crystallized for us the issues that underlie this legislation.
The case involved a young man with cerebral palsy named Justin Clark. He had been institutionalized by his parents at the age of one and a half in the Rideau Regional Centre. He had not been in communication with his parents for a considerable period of time following admission to this facility. For a very long time people had assumed he was unable to reason, think and make decisions on his own behalf. Basically, his cerebral palsy was such that he was unable to speak and he was unable to communicate until such time as a new system of communication, known as Bliss symbolics, was developed. And so at the age of 15 or 16 for the first time he was able to communicate with the outside world.
If you looked at his clinical record you would see that people, in assessing his capacity, felt he was an imbecile, an idiot and unable to make any decisions whatsoever on his own behalf. This is the kind of person for whom we have, and should have as a society, a great deal of concern.
When he decided he wanted to leave the institution and live in the community with the support of his friends, who were former staff members of the facility, first the staff of the administration of the institution and then, at the suggestion of the administrator, the parents, raised the issue of Justin's mental competency to make that decision for himself.
Through the intervention of his friends, or I could use the term "his advocates," he was able to get in touch with the Advocacy Resource Centre for the Handicapped. We were concerned that we were being contacted by advocates who may not have been acting on his instructions or direction, and so before we were prepared to go down to meet with him we insisted on receiving communication from him directly. The communication arrived in due course. It was basically a handwritten message. Obviously the advocates had written it down, with a very rough scrawl at the bottom of the page which was his attempt at a signature.
When we went to communicate with him, initially we were told he was not capable of having a lawyer, even though he was over the age of 18 and no one had been appointed his guardian. We were turned away. Only after some persistence and intervention at the senior levels within the Ministry of Community and Social Services was it possible to communicate with him more directly.
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As an advocate, a legal advocate in this case, it was important to establish who was in control, providing direction. In my first meeting with the administrator, I asked that Justin be present. The administrator refused. He said it would be contrary to Justin's interests to be present in the meeting. I indicated that I could not carry on the communication without my client being present. I then went down the very long corridor to the ward where Justin was kept and told him this. Through a rather tortuous process involving the use of Bliss symbols he told me I had acted too precipitously and that in his judgement I should go back and be more compromising in my dealings with the administrator. At that point it was quite clear in my mind who was providing the instructions -- who was the advocate and who was the client in that situation.
Through the court process, the relationship with the family was deeply problematic. The family obviously was acting in what they perceived as being in their son's best interests, and no one ever questioned that at any point. But clearly, in the end, when the court found that Justin was capable of making decisions for himself, there was a great collective sigh of relief and, I think, a sense in which justice had been done. The decision of the court was less attributable to any of the usual players in court -- the judge, the lawyers and so on -- than the testimony of Justin himself. Clearly, too, once everyone had heard what he had to say on his own behalf, the message was quite clear.
But the point lingered for me for a long time afterwards that I honestly don't believe he and I together could have accomplished what was necessary to get that matter into court. What was really essential was to have the assistance of the friends or advocates who assisted him in communicating with me initially, in supporting him and enabling him to persevere in the face of what for him must have been almost inestimable odds. In the end, as I say, people were pleased to see that justice was done and that Justin was free to make the decision he did and which eventually led to his leaving the institution and living in Ottawa, where he has lived since that time.
I mention that story at some length because I think it illustrates a number of the reasons we are here going through a second round of hearings on this issue. A lot of it has to do with the response of family members to the idea of an advocacy system. You've heard and will continue to hear, I believe, from several groups such as the Ontario Friends of Schizophrenics, perhaps the Alzheimer society, that this issue of an advocacy system is not a priority for them. I suggest that may be true in their particular cases, but there are many people in situations such as Justin Clark's who do not have family members actively involved in representing their interests or in supporting them to protect them from the kinds of abuse and neglect people can experience, despite a well-meaning health care system.
So if you hear from people saying the money could be better spent elsewhere, that may be true in their particular case because they are family members actively involved on behalf of their sons, daughters, spouses or parents, but the majority of people in schedule 1 and 2 facilities for developmentally handicapped people who have no family member active at all on their behalf and who are referred to as citizens of the world have no advocate. For them, the issue of having an advocacy system is an extremely high priority.
That is why the number one priority for the Advocacy Resource Centre for the Handicapped since 1981 has been the issue of the establishment of an independent, consumer-controlled advocacy system, the only issue to which we have asked member organizations seeking to become involved with ARCH to subscribe.
We feel the amendments to the legislation have gone a long way in addressing the concerns that have been raised by family members. If I may, I would refer you to section 15.2, which can be found on page 10 of Bill 74. This section, which is a new section, asks that an advocate who is providing advocacy services to a vulnerable person "shall, if feasible,
"(a) consult with the vulnerable person to ascertain whether there are family members or friends who may be willing and able to provide assistance to the vulnerable person; and
"(b) if the vulnerable person agrees or is incapable of instructing an advocate, assist family members and friends in their efforts to provide assistance to the vulnerable person."
The point here, to many of us, was self-evident from the beginning. If there is an active, supportive, helpful family, it's quite likely that individual is not going to require the services of an advocate.
I would go further. Whatever resources are available to whatever government in such a prosperous province as this, we are still never going to have the resources necessary to provide advocates to people who don't need them.
As I say, there are thousands and thousands of people just in schedule 1 and 2 facilities who have no family member present. To us, section 15.2 merely expresses what was self-evident and inevitable from the beginning. However, if it serves to calm concerns on the part of organizations of family members, that's fine.
Section 10 is another new section. This is on page 7 of the bill. Section 10 requires that the minister establish an advisory committee composed of family members, non-professional persons and health and social services practitioners who provide services to vulnerable persons. Again, this would appear to us to be a natural support to an advocacy system and one we would have anticipated seeing. Nevertheless, if people feel this is useful, then we certainly subscribe to the addition of this section imposing an obligation on the minister to assist in the establishment of such a committee to assist the commission in its work. It's an appropriate role for family members and professionals to play within an advocacy system.
However, there is a section which was not changed and which is ARCH's first and foremost concern with respect to this legislation. That's subsection 15(2) on page 10. This is a section that in essence states that in the establishment of the Advocacy Commission it is not necessary that organizations representing persons with autism, Alzheimer's or traumatic head injury be consumer organizations, as is required for all other categories under the legislation.
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For us this is clearly the most objectionable for a number of reasons. First, it is totally inconsistent with the purpose of an advocacy bill to assume that any group of people who are going to be served by advocates are incapable of having their own organizations or their own voice. It is totally inconsistent with that. It is entirely consistent to do so in circumstances where we're talking about substitute decision-making or substitute consents in health legislation, but it's inconsistent when we're talking about people who are being supported in speaking for themselves to presume that they are incapable of establishing such organizations.
Second, it will prevent the establishment of new or further organizations of people with autism, Alzheimer's syndrome or traumatic head injury. Why? Because the history of these kinds of organizations, which is consistent across virtually all of these categories, goes as follows: The first to establish themselves and to establish a voice are the professional organizations; the second to establish themselves and to empower themselves through the establishment of an organization are the parents and family organizations; and the third and last to establish themselves, the organizations which have the greatest difficulty in finding resources and attracting the attention of the public, the press, the media and so on, are organizations of disabled people themselves.
By empowering parents' organizations to speak on behalf of people with autism, Alzheimer's syndrome or traumatic head injury, it effectively precludes the establishment of organizations which do not yet exist but which could have and would have existed if this section were not in the advocacy bill. It's analogous to saying that men must speak for women, that some other group can speak for you. This bill is about people speaking for themselves.
The third objection to this section is that it stifles the voice that should be given to the groups which do exist in these areas. We've made some inquiries and we have learned that across the province there are quite a number of support groups for people with head injuries. Indeed we've been in touch with a number of them over the years as they seek to establish themselves. These groups exist now.
I have heard and spoken to many people who have traumatic head injuries and I'm very impressed with their capacity to run an organization, so much so that the Alzheimer society has hired one of these people as its lobbyist on this legislation. I'm sure there is no connection but I make the point to establish that these are people who are very capable of speaking on behalf of themselves in many circumstances, and to say that their organizations will be overwhelmed by these other organizations of professionals and family members is most unfortunate.
In the case of Alzheimer's disease, this like the others is a relatively recently diagnosed disability. It is progressive. Its effects as we know are extremely serious in terms of one's capacity. However, we know that with early diagnosis and increasingly earlier diagnosis of Alzheimer's there are people who are aware of their circumstances and can make decisions for themselves. Indeed, that is why the sections in Bill 109 dealing with personal powers of attorney are so important to people with Alzheimer's. They know what is coming. They know what impact it will have on their lives and they are perfectly capable for as long as they are capable, of making those decisions for themselves. That is what they require of an advocacy system and that is why they should have a voice for themselves within an advocacy system.
At present we have a member of Parliament from New Brunswick who has learned he has Alzheimer's. He is capable not only of advocating on behalf of himself but he has concluded he is capable, at least until the next election, of advocating also on behalf of his constituents. This is the kind of person who is denied a voice by subsection 15(2).
Finally, in the case of autism we know, as is true for all the disabilities and all of these categories, that there is a range or spectrum of disability. But it is true that there are people with autism who are capable and do indeed organize themselves in support groups. I was informed this morning by the Autism Society Ontario that support groups of people with autism do exist. When discussing the potential of people with autism to speak for themselves -- that is, whether they require an advocate as opposed to a guardian -- in speaking to the Autism Society Canada executive director I was directed to the movie Rain Man. I don't know if you recall the movie Rain Man with Dustin Hoffman, but this is a movie about a person with autism. It was clear in that movie that while a person has a disability -- it does have an impact -- it does not prevent the person from establishing relationships, organizing and speaking on behalf of himself.
In fact, I was told by the Autism Society Canada representative that there has been a breakthrough as recently as last year in what they referred to as facilitated communication, which is more severely disabled people with autism being found to be capable of speaking for themselves through a mechanism of facilitated communication. He stated that while most organizations representing people with autism at the present time are, in his words, "parent-driven," parents have been quite "shaken up" by the impact of facilitated communication and what it means to be able to speak for oneself.
We would say that for all these three reasons subsection 15(2) is unnecessary and in conflict with the purposes underlying Bill 74 and should be changed so as to require that in paragraph 6, as in all the other sections, only organizations of vulnerable persons should be permitted representation rights on the Advocacy Commission.
I would like to make four other quick points. First, the advocacy bill is part of a package. It could stand independently, perhaps, but Bills 108, 109 and 110 certainly cannot survive without the advocacy bill. It's not a compromise; it is a totally different approach to the issue of capacity which is attempted here. Instead of relying upon lawyers and due process under these bills, there is an attempt, through the intervention of an advocate, to counterbalance the power that non-vulnerable people have over vulnerable people. That's why it's essential to the survival, in our view, of these other pieces of legislation that there be a strong and adequately resourced advocacy system in place.
Second quick point: We're not aware of any other effective method of dealing with abuse of vulnerable people other than what is proposed here in the advocacy package. There are basically two methods of responding to the abuse of vulnerable persons. The first can be analogized to the child welfare system, where somebody steps in and intervenes, taking decision-making power away from the child. The second system represented by this advocacy model is one of strengthening people who are vulnerable in our society, not because of themselves but because of the problems that exist within our society. So by strengthening people through the provision of the support of an advocate it has been possible to come up with a different approach to the issue of abuse.
That's critically important because disabled people and seniors reject absolutely the analogy of their situation to that of a child. They reject absolutely the idea that they should be treated through a child welfare system. I point out as well, since at least the Toronto Star has seen fit to talk about resources, that even if we wanted a child welfare system, I would put it to you that there's no way on earth we could afford it.
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The issue of abuse is something ARCH has looked at carefully over a large number of years. We've been involved in many inquests into the deaths of people. We have been involved in an institutional outreach project which was coordinated by Patrick Worth, who is now co-chair of the Ontario Advocacy Coalition and past president of People First of Ontario, and who is present with us today. We've been involved in an abuse project and we are currently involved in yet another abuse program with the support of the Solicitor General of Ontario.
We are well aware of the issue of abuse. We've looked at it for a long time. We know what happens to people who are vulnerable in our health and social service systems. It is our conclusion that the only workable response to the issue of abuse is the establishment of an advocacy system.
The issue of whether or not the advocacy system is bureaucratic has been raised, again primarily by the Toronto Star. I think it is fair to question, as disabled people and seniors have questioned, the accuracy of a number of the points raised by the Toronto Star, but this one I think requires a special response.
It's not possible to do what is necessary to enable people who do not have family members there supporting them without having some resources, some access to information, some access to the individual. It's just not possible to do that. To pretend that we are addressing the issue of abuse without giving people those powers is pointless because it would only be a façade of action on behalf of that group.
There are many voluntary groups such as the Patients' Rights Association, Concerned Friends of Ontario Citizens in Care Facilities and so on which have struggled for a very long time without resources, without support of legislation of this kind, and have done an admirable job. But they are the strongest supporters of this legislation. They don't see their grass-roots identity being lost in a bureaucratic system. On the contrary, they see this breathing new life into their voluntary efforts on behalf of vulnerable people in this province, because the legislation clearly contemplates not that there will be 100, 150, 200 or however many staff-paid advocates out there, but it clearly contemplates that there will be a number of different models of advocacy provided which will in many cases involve extensive, if not almost exclusive, use of volunteers. This is something that, for whatever reason, has not been well understood by the critics of the legislation.
It's been our hope for many years that advocacy will grow from the communities that are there to support people, that the models used and supported by the Advocacy Commission will be as different as the ethnic population makeups of those communities and reflect the needs of those communities. We reject absolutely the idea that an advocacy commission which is accountable to vulnerable people, seniors and disabled people in this province would be bureaucratic.
I'm going to leave it there and pass it over to my colleague Carla McKague.
Ms Carla McKague: Given that our time here is quite limited, I want to address some of the issues in bills 108, 109 and 110. I'm going to address exactly three different types: One is an amendment we are very much in favour of, one is an amendment about which we have concerns and the third is an area that's remained unamended that we think is of major importance.
The first of these, which I'm just going to briefly address, is the addition to Bill 108 of section 47.1 in the present numbering, which gives quite a low level of competency for giving a power of attorney for personal care. This is an extraordinarily important section and very much has our support.
What this section says is that there may be people -- and we know many people -- who are not functioning at a level that enables them to make their own decisions about personal care, medical care or perhaps about housing. However, they do know who to trust, they do know who loves them and who cares for them, so that someone who would not be able to make those decisions personally can choose the person who will do that for them. They don't have to undergo the often necessary but somewhat humiliating experience of guardianship. They don't have to be declared incompetent by a court. They can put that decision-making into the hands they choose: often a parent, a family member or a child, perhaps, in the case of someone with Alzheimer's. I recommend this section very strongly as a very important addition to this bill that will do a great deal to preserve autonomy and dignity.
The one we are very concerned about is an amendment to 109, the consent to treatment bill. Largely, I gather, as a result of an outcry by the medical profession that this was going to be far too cumbersome and bureaucratic and there was going to be enormous paperwork and enormous delays in getting treatment, some of which has foundation, section 10 of this act has been quite massively amended. While I think some of the concerns were founded, it's also our view that this section doesn't contain the answer. This answer significantly undercuts the protections that the Fram committee and every committee dealing with this has said are necessary for this kind of legislation. You can't come in and massively intrude on people's lives without safeguards, and the safeguards here, as David said before, are the advocates. This legislation can't stand without the advocates as safeguards, and in this particular area that safeguard has been drastically reduced.
What we have now is a whole bunch of different categories of people. First of all, if you're under 12 years old you have rights but nobody tells you about them. I find something a little strange in having rights of which no one is required to inform you. I leave that probably to people dealing more with children, who may want to address that in more detail.
Second, we have all these classifications of treatments: We have controlled acts, controlled acts except for prescribed controlled acts. You have to decide if something is or is not a controlled act, or is it a prescribed controlled act, which means we're going to pull it out in this legislation. We have to look at whether the treatment is in the hospital, a psychiatric hospital or another health facility, in the community. We have to look at a large number of things.
What it really comes down to is that if you're in a hospital getting something done to you that can only be done by a medical person and no one has decided to pull that particular something out of the compass of this act by regulation, then you get a rights adviser. In fact, the way it's written at the moment, it only happens to you if you are in a psychiatric hospital. This does say "prescribed health facility," but at the moment there are no prescribed health facilities. Psychiatric hospitals are the only places you would get rights advice. Anyplace else, they have to tell you you're incompetent and they have to tell you you've got a right to see a rights adviser if you want to. That's some help, but it's a significant cutback, particularly with this wide-open door about what is going to be a prescribed controlled act.
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We're not saying you should have to go through this rigmarole every time somebody wants to put on a Band-Aid. That's absurd. In fact, it seems to me that the act now differentiates between treatment, which includes putting on a Band-Aid, and controlled acts, which include things only doctors, nurses and other health professionals can do. Frankly, I don't care if we have any protections at all around putting on Band-Aids. I think we should be defining treatment in the same way as we define a controlled act, that a treatment is something only doctors, nurses and optometrists can do, and we should then be giving appropriate protections.
I would suggest there are compromise positions; we've discussed some with the ministry. One compromise position, for instance, might be to provide full rights advice in hospitals -- including all hospitals, not just psychiatric facilities -- and to provide the opportunity in the community. But I am very worried about this section. I'm very worried about this cutback in protections. Time just doesn't allow for any extensive discussion of other alternatives, but I would ask you to think about that very seriously.
The third area I want to address briefly is one that these amendments haven't touched and which I brought up when we were here before you a couple of months ago. That is the retention in this legislation of a section in the Mental Health Act that allows a single physician to sign a piece of paper and hand a psychiatric patient's money over to the public trustee.
This legislation, Bill 108, provides for what is called a statutory guardian of the estate. Other people get to choose to have the public trustee look after their money. Psychiatric patients do not. Psychiatric patients, as I said, on the opinion of one physician can immediately lose their money.
By the way, there are emergency provisions in this act for other people where there's a desperate immediate need to go in there and take over someone's money very quickly. Those emergency provisions would work just as well for inpatients in a psychiatric hospital as they would for anybody else. There's no reason not to use them.
What we have is something that is at its base discriminatory, but there's a second concern, and I'm not sure I addressed that last time. I want to address it now. That section of the Mental Health Act is, in my experience, the most abused section of any statute in this province. It was put in there for a specific reason originally. It was put in there because very often people reach the hospital in a psychiatric crisis, in a situation where it's very important to assume control of their finances; they may be indulging in wild spending or something of that sort.
That's not how the section generally gets used. It gets used as a shortcut for little old ladies with Alzheimer's. Instead of going off and doing it the right way with the legal safeguards, you simply pop them into a psychiatric hospital, get a doctor to sign a form and a notice of continuation and there you are. No fuss, no muss, no bother.
It's worse than that. It's routine practice to send a psychiatrist down when a little old lady's down on the surgical floor and not even subject to the Mental Health Act: Fill out a form, she's incompetent, she doesn't have her money any more, and in fact she doesn't get any rights advice because it's not treated through the rights adviser program because she isn't a psychiatric patient.
The worst I've ever seen is taking someone who's not even in the hospital, who's never been in the hospital, arbitrarily declaring them to be an outpatient of the hospital and then making them financially incompetent when they've never even been there.
A section that is capable of this much abuse is a section that has to go. All the safeguards, all the protections in Bill 108 are going to be meaningless if they can be obviated by the simple mechanism of using or misusing this section in the Mental Health Act.
I don't believe I have anything else to say.
The Chair: Questions and comments.
Mr Stephen Owens (Scarborough Centre): Mr Baker, it's a pleasure to see you once again. I think your remarks were cogent and hit the nail on the head. My question to you is with respect to advocates and your comment that advocacy should not be bureaucratic and the commission should not be bureaucratic. My question is around the concern I am hearing currently with respect to advocates and the conflict they seem to feel between transfer payment agencies that pay their salary and then having to advocate on behalf of clients against the agency they are currently working for. How do you see this legislation changing that particular concern as well as keeping it the least bureaucratic as possible so it's an evolutionary process and growing with the different needs in society?
Mr Baker: As you're aware, the amendments make it clear that organizations that would be in a conflict-of-interest position, as are many of the transfer payment agencies currently supervising the services of adult protective service workers, cannot apply for and cannot be given funding by the Advocacy Commission. The provisions defining the class of organization specifically preclude funding of organizations that provide other services to vulnerable persons. This is something that has received the support of the Ontario Advocacy Coalition. ARCH is a member of that coalition and is supportive of that position.
Mr Malkowski: I was wondering if it would be useful to hear from the public trustee on the issue of statutory guardianship. He won't be coming unless he is formally invited by the committee. Could you suggest this?
Ms McKague: I certainly think it's always valuable to hear from the public trustee on these issues. He is the person who is going to be dealing with this later. On the specific issue I raised, I'm not sure how directly relevant it would be, because the public trustee of course is largely concerned with administering these estates once someone has filled out the paper. He's not obliged -- and in fact I think he properly takes the view that it would be improper for him -- to go behind the paper. He's not there to make findings of competency or incompetency but merely to administer once someone else has made those findings.
On the other hand, having dealt with a number of people put into the system through this mechanism, he may well have a good deal more to say about it than I would think. I would suggest, in any case, given that Mr Paisley is the person who will be administering this system, that it would be valuable in a number of respects to have him before your committee.
Mr Malkowski: Perhaps I could ask a different question related to Bill 74, subsection 15(2). You were talking about a concern about including organizations of consumer groups -- for example, head injured and autistic consumer groups. Those groups have not approached us. I'm wondering, have they approached you and made recommendations about changing the legislation?
Mr Baker: I think that's probably directed to me. The groups themselves are small and are basically self-help in their orientation. They are referred to as support groups. We have communicated with some of the head injury groups. I was on the task force for the Ontario Head Injury Association which received submissions from a number of these groups, so I'm familiar with them. I don't happen to have addresses and phone numbers for them. I think the mere fact these groups do exist, and no one denies they exist, suggests to me that there is no need for subsection 15(2) as it is currently worded. Perhaps we should be out doing our homework and tracking these groups down across the province. However, resources, time and other distractions have not permitted us to do that.
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Again, I think it is a question of principle. If you asked me 12 years ago if there were groups of developmentally handicapped people in this province, I would have had to say no. If you had asked me about psychiatric patients -- again, the first groups of psychiatric patients I'm aware of really only started to come together about that time as well, in the late 1970s. There is a history and a progression to these things, as I tried to describe it, of moving from professional organization to family organization to self-help and eventually to advocacy organization, which has been the norm for all the other groups listed here.
The neurological conditions have basically come to light only recently. Traumatic head injury has only become an issue in the last 10 years because of advances in medical technology. These people didn't survive traffic accidents 10 or 15 years ago. It's that recent. Alzheimer's has only been separated out from senile dementia in recent years. Autism: Again, it has been relatively recently that there have been advances in this area. As recently as this past year, people it had previously been assumed were non-communicative, unable to speak for themselves, through the mechanism of facilitated communication are now being found to be capable of speaking for themselves. It is like the Justin Clark situation. Until Bliss symbols were developed, Justin was assumed to be incapable of making any decisions. He was unable to communicate.
To me, the assumption underlying subsection 15(2) is that these groups are somehow fundamentally different from other groups and I think that is absolutely wrong and inconsistent with why we have this here. If these people are incapable of speaking for themselves or organizing themselves, we should just say that people with autism, Alzheimer's syndrome and traumatic head injury should not have an advocate. If you ask those organizations whether that is the way they feel about it -- that is, parents, family-member organizations in these categories -- I think you will be told, "No, absolutely, these people would benefit from the assistance of an advocate." Why? Because they are capable of speaking for themselves with the assistance of an advocate. That's what this is all about. So the short answer is, "No," but the longer answer is "So what?" Let's give these people the chance to come forward and the next time there are hearings on this issue, I'll bet you dollars to doughnuts they'll be here.
Mr Alvin Curling (Scarborough North): The ARCH group, as you know, has contributed tremendously to advocating for those who are most vulnerable. I want to commend you for your presentation and hope that, of course, it's progressing the way it's of benefit to all. As you were making your presentation, I noticed that both of you have some reservations about some of the amendments our government has put forward, and like anything else you can't have a perfect bill.
Your last comment, too, brought me to a point when you were asked about other groups not included yet and should they come forward and make their presentation. You said: "No, they have not yet done this. Maybe we should put this through quickly and then later on," if I understand you correctly, "then the presentation or their case could be made, because then at least we have to get on with it." I presume I'm hearing, then, that it is urgent that we should proceed as quickly as possible. On the other hand, if these things become law -- one of the things I have discovered since I became a legislator is that as soon as a law becomes effective it is one hell of a thing to get it back off if it is wrong or even to amend it. We should be very careful about this. Do you feel the progress of this is too slow or is it extremely important that we go rather carefully to make sure that those who are not yet included be included?
Mr Baker: I think the view is that the process has been a lengthy one, as our president Carol McGregor has said. The history of government being called upon to deliver this kind of legislation goes back to 1981. It has involved action by the Progressive Conservative government, by the former Liberal government and now by the New Democratic Party government.
We're pleased to see the matter is progressing. We're pleased to see that it's progressing on a non-partisan basis with all parties attempting to improve the legislation to the extent that it is possible. We're pleased to see that everyone will have a say in that process and we're pleased to see that the end is in sight because it's time to actually do something after having laboured for 11 years trying to get this legislation through.
In terms of the particular issue which we are raising, subsection 15(2) of the advocacy bill, that was a matter which was raised in the first round of hearings and we were mystified to see that the one issue that we felt was of sufficient concern to be our overriding concern in relation to advocacy was not addressed when the issues of so many other groups were so successfully addressed as part of the amendment process.
We would hope the opposition would continue to press the government on this point if that remains necessary, because we feel strongly that this is a wrongheaded section in what is otherwise an excellent piece of legislation.
Mr Curling: I have another question which is a different matter. I know we try to define what an advocate would be and who would be an advocate, so to determine that, one would wonder what sort of training an advocate should have. That might be a very long question but could you give us some idea of what and who an advocate would be, and what sort of training is essential to make a good advocate?
Mr Baker: As you may or may not be aware, I was out of the country for a period of seven months and I was mystified when I came back to realize how issues of this kind could have become so pressing to so many people, and then I realized why that would be. I think it's because people are not familiar with what disabled people and seniors are capable of doing when they work together, and in this case I say that the structure which has been established will represent the establishment of an Advocacy Commission which will be disabled people and seniors working together on behalf of vulnerable adults.
The issue of training has been raised. The issue of role definition has been raised and so on. To my mind, what has been missing in the discussion has been a sense of respect for what an Advocacy Commission accountable to disabled people and seniors is capable of doing, and a sense of trust that they will be the best at identifying the functions of an advocate and the kind of training an advocate requires in order to effectively provide vulnerable Ontario citizens with advocacy services.
I feel strongly about this because I work for an organization which is governed by 43 organizations of disabled people, and the fact that the commission is going to be drawing from organizations of disabled people to my mind resonates with the kind of accountability I have within my organization, the kind of training my staff has and the kind of decision-making which functions within ARCH.
For me, the Advocacy Commission represents an organization which is to be respected and trusted as the voice of disabled people and seniors in this province, and should be given a great deal of leeway in the areas of role definition and training to be flexible. You can't have it both ways. If you want to define training, you want to define roles, you want to define anything, you've got a bureaucratic system. If you want to have a flexible system which is responsive to the needs of people, you can't define in specific language the kinds of training that people require.
Patrick Worth -- I referred to him earlier -- one of the finest advocates the province of Ontario has ever produced, has very little formal education, but he's lived in an institution, he's worked in a sheltered workshop and he's a powerful advocate on behalf of people who have been labelled "developmentally handicapped." That's the kind of person I would be fearful an advocacy system would lose if we go about the business of defining with academic degrees and precision what we mean by an advocate. It may be that we can, through various training programs, provide good training for advocates, but I don't think we should say now and for all time, "This is what an advocate will look like."
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I heard my friend John Ellis on the radio Saturday morning -- John Ellis is the executive director of an Alzheimer society -- saying that he hopes the advocates will receive sufficient training to be aware that people with Alzheimer's have certain behaviour traits, and I hope so, too. I think you should assume, for the same reasons you would assume that someone who works for my organization is informed when representing someone with Alzheimer's about what it is to have Alzheimer's, that an advocacy commission will want to have the advocates who are ultimately accountable to it knowledgeable about Alzheimer's. For me, that is a given. I would assume that, but I would not assume that an advocate requires a degree or formal education in order to be effective.
I would hope we could leave things where they are in trust and respect for disabled people and seniors and their Advocacy Commission -- which is not the government's; it is their Advocacy Commission -- so that they can establish the kinds of standards that we all know will come out of this kind of a system if it's given the opportunity to operate.
Mr Curling: I wasn't taking the position that advocates should have degrees; I was asking how you feel and what kind of training they should have. I don't necessarily feel that if one has a degree one then makes a good advocate or not. I know that experiences and even compassion -- a lot of things -- are taken into consideration. Of course, as you get a structure set up -- I know you talk about the bureaucracy -- sometimes we lose the human being in that process.
The other question that has been asked is whether advocates should be paid. As soon as you bring remuneration into it, should it come in, it's going to take on a different kind of direction as to who should be an advocate. This is your input, which would be important to the committee here to know what direction we should go in.
Mr Baker: Certainly the message I'm trying to convey is this: The system should be as flexible as possible. We don't know exactly what's going to work, but I think a commission, given the mandate to fund different models, using different mixes of staff and volunteers, different kinds of training, will be in a position, over a period of years, to evaluate what works best. But I would not want to preclude someone who has no formal education, no recognized skills but who, as you say, sir, has great compassion, from being an advocate almost in the sense of a friend, as Sean O'Sullivan said, for someone in a chronic psychiatric wing of a hospital or in a nursing home or home for the aged.
Those people don't require an advocate like the advocate required by someone who is living rough on the streets or who is in Oak Ridge at Penetanguishene. Those require different kinds of skills; they pose different demands on the advocate. To say that there is one kind of advocate we need in this province, I think is a mistake. What we have is a very broad range of needs based on cultural and regional differences, and we need to be as flexible as possible, particularly at this stage, I believe, in allowing people to get about the business of starting to deliver this kind of service. This is an area where, if any further tightening is required, I would suggest we're five or 10 years away from being in a position to say so. I think we need to have more experience with this kind of system and we need to be erring, if we do err, on the side of flexibility rather than on the side of bureaucracy.
Ms McKague: Could I add one aside? This may reassure Mr Curling a bit. I subscribe totally to what David said, but just to let you know that the educational institutions of our province are in fact anticipating the need, I spoke to someone just two or three days ago who called me to inform me that, starting this September, Humber College will be offering a program in advocacy, and to give me a rough outline of the curriculum, which, unfortunately, I have not really retained, other than sort of general -- it's a certificate program. One would come out with a certificate in advocacy -- obviously, some of the legal issues that have to be dealt with, clinical issues, a breakdown in part of the program into advocating for a particular population so that you get some specialization. I have no idea how it's going to turn out. I was impressed with the names of some of the faculty they've lined up: very experienced and respected advocates.
So I don't think once the commission decides what it wants there's going to be a shortage of places to get it. In fact they're going to be banging the commission's door offering training.
Ms McGregor: In the north as well there are five community colleges who are now going to be offering an advocacy program that has been designed by a disabled woman by the name of Joanne Nother in Sudbury. This program is very exciting because it's going to be offering people with disabilities a bit more formal education to perhaps address some of the concerns that you are raising. But it is also going to give them the right perhaps to earn money to get off welfare, which all of us feel we have that right to do.
Mr Curling: Just to make two things clear: I'm not raising any concerns.
The Chair: We have two more brief questions.
Mr Curling: Can I just for a minute say that I raised that because I'd like, for the record, to hear your views on this. The other part: I'm not really impressed with the community colleges having a course. They seem to be jumping the gun anyhow because I think as soon as it has been defined here they will be in a better position to put the courses forward, to know what an advocate would be.
The Chair: Very briefly, Mrs Carter.
Ms Carter: First of all I want to thank you for your presentation and questions. I think it has been extremely valuable and very much in the spirit of what we're trying to do. I just wanted to pin down absolutely what it is that you're objecting to in section 15.2, because to somebody just reading through quickly, there's not much there. I take it it's the words "or is incapable"? Is that the real problem there? In section 15.2 of Bill 74.
Mr Baker: I'm sorry. I'm referring not to section 15.2 at this point but to subsection 15(2). The specific words I'm referring to are "except in the case of organizations referred to in paragraph 6 of subsection (1)." Do you follow me? On page 10, about a third of the way down the page, is subsection (2), and it says, "In order to participate in the nomination process, an organization must have at least 20 members, and, except in the case of...a majority of the members must be or have been persons whom the organization represents."
As a result of that, any organization with 20 members which claims to represent persons with neurological disability need not have any members who are persons whom the organization represents. To us that is a contradiction of the whole spirit of the advocacy legislation.
Ms Carter: Okay, I get your point, yes. So that it's not the actual vulnerable people who are going to be involved. Right.
Mr Baker: Exactly. Yes, thank you.
Ms Carter: I wanted to be absolutely clear what that was. Is there any more time?
The Chair: Mr Winninger. One more, last question.
Mr Winninger: Actually, my question was answered, so can I give my time to Mrs Carter?
The Chair: One more brief supplementary, Mrs Carter.
Ms Carter: I was actually talking with a group about Bill 74 this morning and they were in favour of it, they were friendly and they had a couple of concerns. One was that some people who are involved as care givers and so on who might discover people who need an advocate feel that they are subject to confidentiality rules that would preclude them drawing anybody's attention to that. Do you have any feelings on that?
Mr Baker: Yes. The people in that situation, in my opinion -- I am confident in ARCH's opinion -- should speak to the individual himself or herself and advise that person to avail himself of the services of an advocate if the person is not capable of doing that with assistance from the staff person. Perhaps we're not into an advocacy situation in those circumstances. So that's the direction in which things should be going.
There is provision of course for what's referred to non-instructed advocacy under the legislation. We certainly strongly support the circumstances in which that provision is made for non-instructed advocacy. You'll be hearing more from the Ontario Advocacy Coalition on this point. I believe it will be perhaps the primary point which the advocacy coalition will be raising with you. Not wishing to anticipate it, I would simply say that ARCH is supportive of the Ontario Advocacy Coalition on that point.
Ms Carter: There might be a care giver who discovers that somebody is not being well treated. They could call an advocate and hopefully there'd be no comeback against them.
Mr Baker: Yes. To return to the Justin Clark case, someone called up and said, "I think Justin Clark needs a lawyer." I said, "Well, that's fine that you think that; what does Justin Clark think?" That's the point we're making.
The Chair: Ms McGregor, Ms McKague and Mr Baker, on behalf of this committee I'd like to thank you for taking the time out this afternoon and giving us your presentation. Thank you very much.
Seeing no further business before the committee today, we stand adjourned until 3:30 tomorrow afternoon.
The committee adjourned at 1701.