LEARNING DISABILITIES ASSOCIATION OF ONTARIO
CONTENTS
Thursday 6 August 1992
Advocacy Act, 1992, and companion legislation
Learning Disabilities Association of Ontario
Eva Nichols, executive director
People First of Ontario
Judith McGill, adviser
Anne West, vice-president
Patrick Worth, past president
Ontario Advocacy Coalition
David Baker, executive director, Advocacy Resource Centre for the Handicapped
Joan Fussel, co-chair; representing Concerned Friends of Ontario Citizens in Care Facilities
David Giuffrida, acting provincial coordinator, psychiatric patient advocate office, Ministry of Health
Subcommittee report
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:
*Kwinter, Monte (Wilson Heights L) for Mr Mahoney
*Owens, Stephen (Scarborough Centre ND) for Mr Winninger
*Sterling, Norman W. (Carleton PC) for Mr Harnick
*Sullivan, Barbara (Halton Centre L) for Mr Chiarelli
*Wilson, Jim (Simcoe West/-Ouest PC) for Mr Runciman
*In attendance / présents
Also taking part / Autres participants et participantes:
Fram, Steve, counsel, policy development division, Ministry of the Attorney General
Malkowski, Gary, parliamentary assistant to the Minister of Citizenship
Valentine, Mary Beth, senior policy and program adviser, Office of Disability Issues, Ministry of Citizenship
Clerk / Greffière: Freedman, Lisa
Staff / Personnel: Swift, Susan, research officer, Legislative Research Service
The committee met at 1010 in committee room 1.
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'd like to call this meeting of the standing committee on administration of justice to order. This is the second round of hearings on the amendments to the advocacy package.
Before we start, we have the answer to Mr Sterling's question of yesterday, if you would, please.
Ms Mary Beth Valentine: Mr Sterling, I'd like to make the point that I'm not giving a legal counsel perspective. I'm not legal counsel and I wouldn't want to get myself into hot water.
The issue relates basically to the concept of disability policy. There is a World Health Organization document called International Classification of Impairments, Disabilities and Handicaps that basically sets out --
Mr Sterling: For other people in the committee, I think the question relates to what "perceived" is in the definition.
Ms Valentine: I'm sorry. Yes. Why the act was amended to include the words "or perceived" in the term, "disability, whether actual or perceived," and that was clearly the change. The question Mr Sterling raised was why "perceived" had been included.
Mr Sterling: In the definition of who is a vulnerable person. In other words, it's somebody who has a disability. It doesn't matter whether that disability is actual or perceived. The "or perceived" was added in the amendments. My question was why it puts in that "or perceived."
Ms Valentine: The World Health Organization document International Classification of Impairments, Disabilities and Handicaps recommends that disability policy worldwide be established considering the three distinct concepts of disability.
The first concept is impairment, which is considered the basic ideology, the disease, the disorder etc that creates a disability. The disability itself is the second concept. It's the actual limitation of activities, a functional disability, the functional limitations. The third concept is the handicap. The term "handicap" has to be considered in the context of the environmental factors: the society the person is in and the societal role of individuals, attitudes, roles and perceptions, the impact on our perceptions as a society and the impact that has on disabled people.
In particular, the Canadian Classification of Disability, Impairment and Handicapped, which is sort of a secondary document to the WHO document, stresses the fact that the handicapping concept is a situational result of the person's interactions with the environment, not simply a result of the impairment and the disability.
From this perspective, persons may face handicapping situations that are completely based on societal factors such as misunderstanding, fear, ignorance, stereotypes and stigma, thus a perceived disability. People's limitations are often not based on their own ability or disability but on the labels we as a society have placed on them.
People First of Ontario will be presenting this afternoon, I believe. For them the issue of labelling, for instance, is very important. I hate to use some of the types of derogatory terms, but you could think of the issue of labels in the same sense as racism and the types of terms that used to be used to refer to certain classes of people, and I suppose certain races of people etc that I suppose still are in some situations.
By the same token, terms like "retard," "dumb" and "gimp" are the types of terms that people with a disability have been extremely conscious of over the years, of those types of attitudes actually having an effect on people's perception of them and their abilities.
Obviously this is an extremely sort of sensitive issue for people with disabilities and disability groups. It relates to the Obstacles report that you will probably remember, Mr Sterling, in particular because you were a member during the era of the disability issue, the Ontario Year of the Disabled Person. Then the ongoing Decade of Disabled Persons and the Obstacles report that came out reinforced the same concepts.
Quite frankly, the amendment is also directly a response to the disability groups represented by the Ontario Advocacy Coalition. The advocacy coalition in its presentation specifically asked for this amendment to be made. I honestly didn't have the time last night to go back and look and check and see what other groups had also requested the amendment, but there are certainly a number of individual groups that have approached the minister or the Office for Disability Issues wanting to make sure the inclusion was in the act.
Mr Sterling: Can I just ask a supplementary, with your indulgence?
Ms Eva Nichols: This is of great interest to us anyway, so it's fine.
Mr Sterling: I guess my concern about including "or perceived" is that I had hoped that if in fact the Advocacy Commission was set up and went ahead, it would be dealing with real problems for vulnerable people; in other words, that we would be dealing with real issues.
Would this definition not leave it open for people who wanted assistance in lobbying, assistance in promoting their own self-interest in some way, be it an individual or a group? Would it not put the Advocacy Commission in the vulnerable position itself of having to respond to people who really were not vulnerable people and were not what the intent of the commission was set up for?
Ms Valentine: I think it has to be very closely tied in with the other parts of the definition, and clearly the definition says that a person has to have a moderate to severe disability and that he has to have difficulty in expressing his own wishes, acting on his own behalf. So there have to be the first two situational criteria there before they would be eligible to start with.
The third issue would come into play, probably not in an actual open discussion, around a labelling type of situation or around a situation where a person perhaps had a difference in opinion with a physician or an employer or whatever about what the label was that he had. Psychiatric clients would often question their diagnosis, and again with good reason, in that on repeated admissions their diagnosis frequently changes. They might be labelled schizophrenic one time, schizo-affective another time, affective disorder. You don't have to agree with the label to agree that you have a problem, so perceptions are important in that concept to some people.
I don't think it changes in any way the intent of the act and I can't honestly tell you why it wasn't included in the first place. I think probably if the draftspersons at the time had been familiar with disability policy, it would have been included.
Mr Sterling: I don't agree with its inclusion. I think you're leaving the Advocacy Commission open to utilization by people who should be using other avenues to promote their causes. I really think the Advocacy Commission is going to have a difficult time turning away anybody under this definition. Anybody in society is going to fit into the vulnerable category as a result of putting in the "perceived" part in the definition. I think that is unfortunate, but I understand your arguments. I think your arguments make sense, but not within the definition.
1020
LEARNING DISABILITIES ASSOCIATION OF ONTARIO
The Chair: I'd like to call forward our first presenters today, from the Learning Disabilities Association of Ontario. Good morning. Just as a reminder, you will be allowed a half-hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 or 20 minutes to allow time for questions and comments from each of the caucuses. I understand that you don't have a prepared brief, so please, as soon as you are comfortable, identify yourselves for the record and then proceed.
Ms Nichols: Thank you very much. My name is Eva Nichols and I'm the executive director of the Learning Disabilities Association of Ontario. With me is Tanya Lewis, who is a resource counsellor working in the provincial office for the association.
We appreciate this second opportunity to come back before you and present some further comments about the amended version of Bill 74. Our remarks will focus exclusively on that particular bill and not the other accompanying bills.
The Learning Disabilities Association of Ontario is an advocacy organization that has been in existence for some 29 years. We advocate on behalf of those people who are identified or who are presumed to have a learning disability. Perhaps the "perceived" problem comes into that situation, because the majority of people who have learning disabilities in fact are not identified, very largely because when they went to school such identification still wasn't around. We represent about 10% of the general population, approximately 800,000 people in the province of Ontario who have learning disabilities.
First, I'd like to comment that many of the amendments that you recommended and that have been included in this revised version reflect some of the concerns that we had before. On that, I'd like to compliment you and thank you on behalf of our population.
Second, there are eight very specific points that I would like to make in relation to what we now have in front of us in terms of Bill 74. I'd just like to run through those. It will not take very long, and then hopefully there will be an opportunity for questions and dialogue.
Starting out with the first comment, in section 2 under "Definitions" the current recommended definitions of "advocate" and "community agency" both talk about these individuals acting on behalf of the commission. I'd like to put in front of you a concern that where advocates and community agencies act on behalf of an external organization which is appointed and reports to government, in many respects this creates a problem for consumers and for those community agencies.
Very often the kind of advocacy, especially the systemic advocacy, that organizations like ours get involved in relates to legislation which is discriminatory in nature. In a different forum, we were delighted to see that Mary Cornish recommended in the human rights reform that there should be group action allowed on human rights cases. We are just concerned that if in fact all advocacy and all community agency advocacy occurs on behalf of the commission, people will feel that they have one hand tied behind their back and cannot act in a totally independent fashion on behalf of the consumer.
Second, in the definition of "vulnerable person" I would like to bring in front of you the concern we had last time, which is that when it is limited to "mental or physical disability, illness or infirmity," it leaves some rather major gaps which currently exist in various parts of Ontario legislation, and people with certain kinds of disabilities that, strictly speaking, do not fit either under the mental or the physical disability label in Ontario are currently left out of certain programs and services.
It seems to us that it would be much more appropriate if the definition either made reference to the human rights code definition of "handicap" and used the same categories, so that there is that correlation, or, alternatively, made reference to the various categories that are delineated in section 15 in terms of the organizations, so that there are no groups of vulnerable people that, in some people's eyes, do not fall under the category of mental or physical handicap and therefore can be excluded.
Currently, this is a very major problem for people with learning disabilities that are excluded from all kinds of government services and funding opportunities on the ground that in the eyes of the Ontario legislators learning disabilities are not a mental or physical disability. We feel very strongly that it could leave a gap that would really provide disservice to our population.
In subsections 7(2) and 7(3), once again there is reference to the role of non-profit community agencies in providing advocacy services. Again I would just like to comment that it seems to us that these services should not be provided on behalf of the commission, but rather on behalf of the consumers whom these agencies represent.
I would like to refer you to this report on human rights reform that Mary Cornish tabled. In recommendation 6, there is some really interesting discussion about the role of community agencies in providing advocacy services for those people who need those. It would seem to me that it would be a very good idea if there was some correlation between these various initiatives.
In section 8 of the amended act, there is some discussion about the structure of the commission and how advocates are to be paid and so on. We have a concern that the Advocacy Commission should not become a really major bureaucracy. We are looking at the Ontario Training and Adjustment Board structure that is currently being set up, which seems to be getting bigger and bigger and bigger, and all that is happening is that money is being allocated to structures and systems and commissions and boards. We feel that, yes, training is very important, but advocacy is of vital importance to the kind of people we represent. We just want to be very sure that the primary allocation of funds will not be to the bureaucracy but to real services to real people who have real needs.
In paragraph 15(1)2, "learning disability" is included as a "physical disability, illness or infirmity that is not readily apparent." When the first reading of Bill 74 occurred, we immediately called the minister's office, pointing out that learning disabilities are not and have never been identified by anybody as a physical disability. We expressed the concern that by including it there, it again will become about as invisible as it is in the people who have it.
We were told at that time that, yes, they recognized that indeed there was a minor error in that, but there had been some rush about preparing this bill and that it could be amended later. That amendment has not occurred, and we feel very strongly that either learning disabilities should be in a separate category in those organizations and those definitions -- because, after all, it is a very large group of people who are vulnerable -- or, if you don't wish to add an additional category, it should be included in subsection (6) with neurological impairment such as autism and Alzheimer's.
If one looks at such things as the World Health Organization definitions and the DSM-3 -- from the Diagnostic and Statistical Manual of Mental Disorders -- and various other categories of disabilities and so on, learning disabilities are always included with neurological impairments and are viewed as being on the same continuum as such things as autism. We feel very strongly that it's important that this kind of categorization be accurately done and that it reflect the facts.
We would like to recommend that somewhere in this act there be some clarification of the situation for vulnerable individuals who are aged between 16 and 18 and who may still be in school. Our association wrote to the minister after Bill 74 was tabled to express our concern about 16-year-olds who are still in school and who, because of what happened with the freedom of information act and because of what is presumed to come from the Advocacy Act, are now having to assume responsibility for certain things relating to special education. The school boards in many cases are excluding the parents from participating in any of the discussions and so on.
1030
The minister wrote back to us at some length about the role of parents and said:
"In most societies parents, by definition, are guardians of and advocates for their children. Children do not have independent legal status from their parents or otherwise appointed guardians until they reach the age of 18, although children between the ages 16 to 18 have more legal autonomy than those under 16, and Bill 74, the Advocacy Act, will not change the legal status of children or the role of parents."
We feel that the current act does not adequately address the situation for those 16- to 18-year-olds who are still in school and who are involved in various educational decisions.
We would like to recommend that either follow-up regulations or the act itself should deal with the issue of disclosure of information as laid out in sections 29 to 33. It is a very complex set of directions that are laid out there about where advocates may and where advocates shall disclose.
If indeed we want this whole advocacy process to be responsive to the needs of vulnerable people and if we want even small community agencies to be able to work with it, I think it's very important that be explained very well and that, whatever training is offered to advocates by anybody, all of that is really focused upon. I think for some individuals the differences between "may" and "shall" and the threat of possible fines is going to be a very scary prospect and I think you need to be sensitive to that.
In clause 36(1)(c) there is some discussion about procedures and standards governing the provision of advocacy services by community agencies and their advocates. It is very important that community agencies recognize that what are laid down in legislation and in regulations are guidelines, but that they are not absolutely bound by a pre-set set of procedures and standards. The whole strength of the kind of non-profit voluntary agency system we have in this province is that in many cases they have autonomy in how they practice within the strictures of the law.
I think that for some organizations the hint of very tight controls is going to be a really threatening one and perhaps that section could be softened or elaborated upon in such a way that small community agencies are not going to feel they are totally bound.
Finally, we would like to raise again the question that there are advocacy components included in the proposed Employment Equity Act within the Human Rights Code and certainly the human rights reform that has been put forward. We feel it is very, very important again for consumers, vulnerable individuals and community organizations that, if there is going to be a whole series of systems for the delivery of advocacy services, they are the same so that you don't have one set of advocacy procedures when you deal with employment equity and another one when you deal with human rights and another one when you deal with pay equity and so on.
I think that because we want this to be a responsive system which responds to the needs of consumers and their organizations, there should not have to be a whole series of different procedures for community agencies and for advocates to learn and to try to remember that right now we use this kind but tomorrow we might have to use a completely different kind of advocacy system.
Thank you. Those are our comments on Bill 74.
The Chair: Thank you very much. Questions and comments?
Mr Monte Kwinter (Wilson Heights): I'd just like to ask you a question about one of your suggestions on section 15. What is the practical effect of moving learning disabilities from category 2 to category 6? Does it do anything for you other than you feel that would be a better place to have it listed in the act?
Ms Nichols: There was reference made earlier about how organizations and consumers feel about labels and certainly that's a very hot and thorny issue within the disability community.
Because people with learning disabilities are denied so many services and so many opportunities currently, it really is very important to our organization and to the consumers we represent that learning disabilities are correctly designated and they are recognized for what they really are.
I think all it does is it corrects an error. We know it is not a physical disability, and in terms of what the organization gets out of it, no, there is nothing very much, but what the individuals who have the disability get out of it is a much more appropriate identification.
Ideally, yes, we would like to see it in a separate category because we are representing a very large number of people and we would like to be assured of the opportunity of being involved with the commission, but if that is not possible, then at least I think it is important for our consumers that it is correctly identified. They seem to spend an awful lot of time battling existing organization systems, mainly within government, about whether a learning disability is a real disability. I don't think that is an issue here because clearly it is recognized. I think it is very important for them, though, that it is correctly identified as a neurological problem and not a physical problem.
Mrs Barbara Sullivan (Halton Centre): I thought your presentation today was very interesting. I want to pursue some of the discussion you raised about the potential of the expanding bureaucracy associated with the Advocacy Commission and its effect on the volunteer organizations.
You indicated in your remarks that in your view the volunteer organizations should be able to see the legislation and the regulations of the commission more as guidelines so that they could function in the way that most appropriately met the needs of their communities. In fact, that's not what the bill will provide. The bill will provide for quite determined and explicit rules with respect to reporting and the conditions around which the advocates must work, which are included in the bill, plus regulations that none of us has seen and none of us knows about, which are of some concern to us because in fact we don't know what the parameters of those regulations are.
I'd like you to expand for the record on how you see the commission's involvement in determining standards for advocacy organizations affecting a group such as the Learning Disabilities Association of Ontario.
Ms Nichols: I would imagine that the Advocacy Commission -- and I agree with you, we don't have any regulations -- would function in somewhat the same kind of way as the Ontario Human Rights Commission, in other words, dealing with issues that are brought to it and advising agencies how to proceed. An organization such as ours currently certainly spends a lot of time reviewing legislation and reviewing regulations and setting up ways that we can deliver advocacy services within that legislation.
Just because of where our organization is most effective, a great deal of that relates to the Education Act. Of course there isn't a commission of that nature, but certainly under the Education Act and the accompanying regulations, we have set up a process whereby people who represent our association work with school boards, and we certainly control how they carry out those advocacy tasks. We would have no problem with being accountable as a provincial organization to a government-level commission as to how that kind of a process functions.
Where I see the concern is in the advocacy we carry out at the provincial level, which is primarily systemic advocacy, and, second, our 52 local groups who do much more individual advocacy -- all of that has to be on behalf of the commission. I can see us having a tremendous amount of administrative and supervisory activity going on which really would not be in the best interests of our consumers. Quite honestly, if our staff in our provincial office, for example, spent its time supervising advocates throughout the province with the 52 local groups we have, then clearly those people would not be delivering the kind of services that people want of us.
1040
I know money is not the most important thing, but it's pretty important, and if in fact we will continue to function as we do, funded entirely through charitable donations, I'm not at all sure the corporations and foundations and individuals who currently give us their money to spend on behalf of individuals with learning disabilities would be quite as responsive if we said, "We spend a large amount of money reporting to a government commission, and we spend a large amount of money supervising people in the field in terms of their advocacy."
Obviously, there is a reporting structure in place now, and we do try and keep very much on top of what individuals who represent our association do, but at least we don't have this sort of additional structure.
The other issue that is suggested in this is that the pay of advocates should be as delineated by the commission, including benefit packages and so on. I'm sure that all of you who are involved with non-profit organizations know that the only reason we can have the kind of non-profit organizations we do is because there are lots of people in this province who are prepared to work for very little money, no benefits and long hours because they really are committed to it.
If we are going to have a situation where some of the people who work for the non-profit agencies will be commission advocates and they will have to be paid one way and have one set of benefits, we are going to have some fairly major internal problems with the other people who deliver the other services we offer who will not have those kinds of things.
Those are the reasons why we are concerned about everything being on behalf of, rather than under guidelines set by the commission.
Mrs Sullivan: I don't want to steal from my colleagues' time, but I do want to ask one other question. If there are a limited number of resources, which clearly there are in terms of volunteer organizations or other organizations, as the executive director, presumably subject to a board, what would your recommendation be in terms of delivery and use of those resources? Would it be to provide primacy to your requirement and your obligations under the Education Act or under the requirements of the commission?
Ms Nichols: That's a very difficult question to answer. If you were to ask me what I see as the most important thing for us as an organization, advocacy or education, then there is no question. Advocacy is the most important thing for us to do, because it's a cliché that children grow into adults. Frankly, whereas the children of this province are served not too badly one way or another, there are many adults who really are falling through the cracks, and it really requires some significant advocacy. But if it comes to the fact of people working locally with school boards versus the provincial level, working with a structure, a commission, then I would have to say that our board of directors would probably opt for the local, very much more hands-on sort of thing.
The limited resources for advocacy should really go into such things as training people to be advocates, and as much as possible supporting vulnerable individuals to access the services of advocates so that they can get services and funding for things they need; in other words, very much more the decentralized, grass-roots type of thing rather than a great deal of administrative structure at Queen's Park.
Mr Jim Wilson (Simcoe West): Thank you for your presentation. This is really more of a comment or observation. A great deal of time has lapsed since the first round of public hearings and it strikes me today that many of your comments are similar to, and many of your problems or concerns that you raise are still unresolved from what we heard in the first round of public hearings.
Are you getting any satisfaction or degree of comfort that you're being listened to? You've seen 199 amendments come in. Do you have any general comments on that or any salient pieces of advice you'd like to leave with the committee?
Ms Nichols: To be involved with the Learning Disabilities Association of Ontario in the province of Ontario in 1992 is a very frustrating experience, but it doesn't just relate to the Advocacy Commission. It relates, for example, to the fact that we have had an interministerial working group looking at the status of people with learning disabilities in Ontario that has created a really powerful report which has not been released and which none of you has seen as yet. It's being held up because of administrative problems.
Although certainly, when we talk to individuals such as yourselves or to individual civil servants, we always get a very responsive hearing and people always tell us that they understand why we are frustrated, why we are concerned in terms of systemic change, at the moment it really does not appear to be happening.
I think where we have seen a significant change, though, which I suppose is positive, is that as we have been dealing with such things as the long-term care issue and the advocacy issue, we have become more and more involved with coalitions of other disability groups, and I think within the disability community there is a much better understanding about just exactly why we as an organization always seem to be complaining. It's not a comfortable situation when you're always saying "but we are not happy," but I think many of the other disability groups are really understanding why we are not happy, and that is a positive step because at least we are in sync with them.
In terms of what is going to happen with this act, we certainly are very committed to the fact that there needs to be a structure and a system for advocacy for vulnerable people. There is no argument there. I hope that what finally gets royal assent, whenever it does, will be a little more responsive to the needs of our population, because it's a large population and it is an often forgotten and neglected population.
Mr Gary Malkowski (York East): I would just like to clarify it. You're talking about the learning disability organizations specifically, the consumers' organizations. Are you suggesting, then, that in section 15 they would be under the neurological grouping? Is that what learning disability groups want? Do they want to have members appointed to the Advocacy Commission coming under that category?
Ms Nichols: The primary thing in terms of section 15 would be if learning disabilities stood by themselves as a separate disability grouping, rather like it is in the Human Rights Code under the definition of "handicapped," where learning disability appears separately from other disabilities. That would be our number one choice, because I think it would really represent a level of visibility that learning disabilities don't currently have.
If, however, for some reason I don't know about, the number of categories of organizations has been limited to the number you already have there, then I think it would be more appropriately placed with neurological organizations.
I recognize that one of the downsides of that particular subsection is the differentiation between who the consumer is, and I'm assuming that's what you are really getting at: Would that in some way disfranchise the consumers? But I think that as an organization we are very well aware that our consumers are people with learning disabilities, and while we work a great deal with families because many of our consumers are children, we don't have any mistaken idea that somehow we have to speak on behalf of the consumers. The consumers certainly do speak on their own behalf and direct us accordingly.
Mr Malkowski: So is there actually a consumers' learning disabilities organization?
1050
Ms Nichols: No, there is not a separate organization. We have worked together simply because many of the needs are so unmet at the moment that there has not been the kind of separation there has been in some of the other disability areas. The Office for Disability Issues actually has just given us a grant to establish the beginnings of a separate consumer organization and that is about to happen, but in fact they may choose to continue with the single organization. That will be their choice.
The Chair: We have Ms Carter, Ms Akande and Mr Owens yet, so perhaps you could be very brief.
Ms Jenny Carter (Peterborough): Thank you for your constructive criticism of Bill 74, but I am concerned about this accusation that it's a bureaucracy. It seems to me that we have gone out of our way to make it as unbureaucratic as possible; for example, by having it under the Citizenship ministry rather than Health or Community and Social Services and by having this appointments advisory board which is going to consist of consumer representatives. You have also conceded that we need some sort of overall organization for advocacy. I'm just wondering if you could clarify a little bit what we could do to overcome that problem or what that problem really consists of.
Ms Nichols: I compared what I feared -- because obviously I don't know how it's really going to be because we don't have the regulations -- what I see happening with OTAB, the Ontario Training and Adjustment Board project, which began as a way of responding to training needs. At the moment, looking at it from a community organization, all I see is the establishment of a great many boards and a great many things and most of our involvement so far has been to nominate people who then have been interviewed and that kind of thing.
At the moment, in spite of the fact that we have spent an inordinate amount of time responding to documents and going to meetings and being consulted, what we don't see yet in OTAB is how anybody who needs training is going to get money to get that training. I recognize that will come, but at the moment that is not obvious. It equally isn't obvious how Jobs Ontario will tie into that, and that may be because I have not seen the overall plan.
I'm merely alerting you to the concern many other organizations besides ours have. It is because advocacy is such an important thing for the kind of people we are, who we represent and work with that we would hope there would be as few boards, structures, processes and so on, and that as much of the very limited available resources would go into real services for the real people who desperately need it. So in a way I'm raising a problem which perhaps isn't quite there yet. I really just want you to be aware that we are very concerned in terms of what we see in some of the other areas and we hope it won't rub off.
Ms Carter: This is more a warning than a condemnation of what's there. Thank you.
Ms Zanana L. Akande (St Andrew-St Patrick): Your idea that learning disabilities should be included is an interesting one that I support. However, I also know that the identification of learning disabilities is often questionable and that it is actually -- if you look at special education definitions -- a definition by exclusion, a disability that is not caused by intellectual deficit, is not physical, so there isn't an actual formal pinpoint. Having been a consultant in that particular area, it is particularly interesting to me to know how you would have that designation assigned formally, by what assessment procedures. Whose would you have us accept?
Ms Nichols: The definition that the Ministry of Education has for learning disabilities has not been formally revised since 1984. In the past eight years, a great deal has happened in terms of research and our ability to identify. Certainly today you could, if you wanted to, use electroencephalograms and such things and identify learning disabilities. The last thing I want to suggest is that we go that route. All I'm saying is that Education's definition pre-dated our capability in sort of medical ways of identifying.
I think that especially if in fact the vulnerable person will continue to be identified as the identified or perceived problem, then many of the much more informal structures for identifying learning disabilities, based on discrepancies rather than exclusions, would be beneficial.
I recognize that one of the big dilemmas we have faced and we continue to face is that the identification of children with learning disabilities so much reflects the person who is doing the identification rather than the child.
Ms Akande: And the class of the child.
Ms Nichols: Right. I certainly would not want to suggest that we remain with that situation. But in fact there are excellent interview-style assessment tools for adults that are being used and can be used, so that we don't have to have psychologists involved and we do not have to have medical examinations. I think that in fact those kinds of ways of identifying learning disabilities would work well.
It seems to me that many people want to eliminate the category of learning disabilities, because in so many cases it has been poorly used. It seems to me in that case it's really throwing the baby out with the bathwater, because indeed learning disabilities do exist, and they really are a difficulty. Just because many of our school systems have misused the terminology, it doesn't justify getting rid of it all together. I think there are good ways of identifying and defining learning disabilities these days which are not all exclusionary, because I grant you that the exclusion is a problem.
Mr Stephen Owens (Scarborough Centre): You brought up a really interesting point with respect to the employment relationship of the advocate in terms of the amount of time and money that would have to spent by agencies like yours to supervise etc.
How do you view that employment relationship? Do you think the advocate should be employed by the agency that he or she is advocating against perhaps, or do you see the nature of the advocate's employment relationship needing to change?
Ms Nichols: It seems to me there may be a number of different ways that advocates can be employed. Certainly there are currently advocates who are employed by community agencies such as mine and they may indeed be advocating against that very organization or perhaps another branch of that same organization they work for.
It does not, as far as I can see, create a tremendously big problem while the choice of the advocate is the consumer's, if the consumer can decide who is the advocate. In the same way, if the advocates work for the commission and the commission is or is perceived to be a part of government, then all those advocacy issues that come up via the government and government services and government funding would also create a roadblock.
I would say the ideal situation is that the advocates work for community agencies and that the commission sets the guidelines but doesn't have them working directly for it. That is more for financial and reporting reasons than anything else. It just seems to me if the commission is going to have thousands upon thousands of advocates throughout the province working on its behalf and somebody's going to have to supervise them and so on, the finances related to that are tremendously costly.
Mr Owens: So in your view, you don't feel there might be either a conflict of interest or a perception on behalf of the clients that because the advocate works for the particular association which they may be having trouble or difficulty dealing with, that advocate would be perceived as being less effective. I guess the second part of that, in terms of the advocate's position, do you not feel he or she may be coerced -- that's a strong word -- into perhaps not advocating as strongly against his or her employer?
Ms Nichols: I think certainly the question of conflict of interest would have to be very carefully addressed, but the consumer who is using the services of that advocate would always have another choice, because I'm quite sure there will be advocates who will be with other organizations or in other circumstances, legal aid and that kind of thing. I would like to think that most non-profit organizations would not coerce their staff when their staff were doing the right job. More than that I can't say. Obviously it depends on the individual agency.
I think one of the guidelines the commission could in fact set down is that agencies have to come up with a structure for how the advocates are to function, how they are to be supervised and to what extent they have latitude in terms of advocating within that organization.
The Chair: Ms Nichols, Ms Lewis, on behalf of this committee, I'd like to thank you for taking the time this morning and giving us your presentation.
Just a reminder that we'll be having a subcommittee meeting right now and we will reconvene at 2 o'clock to discuss the subcommittee report. This committee stands recessed until 2 pm.
The committee recessed at 1102.
AFTERNOON SITTING
The committee resumed at 1414.
SUBCOMMITTEE REPORT
The Chair: I call this meeting back to order. First of all, we'll deal with the report of the subcommittee.
"Your subcommittee met on Thursday, 6 August 1992, and agreed to the following with respect to Bills 74, 108, 109 and 110:
"1. The committee will utilize the reprinted bills contained in proposed government amendments and deem these amendments moved.
"2. The clerk of the committee shall request the attendance of the ministers of Citizenship, Health and the Attorney General for the purpose of clause-by-clause on their specific bill(s).
"3. The bills shall be considered in the order that best accommodates the ministers' schedules.
"4. A maximum of two days clause-by-clause consideration shall be spent on each of Bills 74, 108 and 109. One day clause-by-clause consideration shall be spent on Bill 110.
"5. Votes on the individual sections and on the bills as a whole shall be stacked until following consideration of the final bill."
One thing I have to mention is that recommendation 1 has to be unanimous. Agreed? Agreed.
Would somebody care to move the subcommittee report?
Mr Mark Morrow (Wentworth East): I'll move that, Mr Chair.
The Chair: Mr Morrow moves the subcommittee report. Any discussion? Comments?
Mrs Sullivan: I'd like to emphasize that certainly the opposition parties feel very strongly that the ministers should be in attendance during clause-by-clause consideration. We have not had their presence other than at the opening addresses. While the parliamentary assistants are doing their work to the best of their ability, they have not been able to respond to the policy context. In fact, it's quite clear they don't have the authority to concur with amendments that are put forward from the opposition if those amendments are ones which could be accepted by the government. As a consequence, we feel that is a singularly important aspect of the subcommittee report.
The Chair: Further comments? Seeing no further comments, all those in favour? Opposed?
Motion agreed to.
The Chair: Our next presenters aren't here yet, so we will have a 10-minute recess.
The committee recessed at 1416.
1433
PEOPLE FIRST OF ONTARIO
The Chair: I call this committee back to order. I'd like to call forward our next presenters, from People First of Ontario. Good afternoon. As you know, you'll be allowed a half-hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you're comfortable, could you please identify yourself for the record and then proceed.
Mr Patrick Worth: I'm Patrick Worth, the past president of People First of Ontario.
Ms Ann West: I'm Ann West. I'm the vice-president of People First of Ontario.
Ms Judith McGill: I'm Judith McGill and I'm a part-time adviser to People First of Ontario.
Mr Worth: Thank you for inviting us here today. We appreciate being able to give you a chance to hear our point of view on advocacy and guardianship.
Before I get into that, I'd like to explain the role of our adviser. Judith McGill is here to support us in case we get stuck on things we're not sure about and to help us generally along with communication if we don't know where the communication is going at some times, and just generally to be supportive of People First members here.
We believe that the Advocacy Act should be a shared advocacy model. That means both paid and volunteer. It's very important to understand that we, as People First members, think a lot of people with disabilities have had nothing but paid people in our lives and we believe that volunteer advocates working with paid advocates make a better team. It assures the individual that advocacy will be a friend and that advocacy means that we are reaching out to people who have been left isolated and segregated for a long, long time.
We don't believe that advocacy, volunteer advocacy or paid advocacy, should be one versus the other. Both are equally important, and we recognize the fact that some people need to be paid to be advocates and we also recognize the fact that there need to be volunteers. There need to be people who are just willing to give their time to be advocates and to be a closer friend to the individual.
The emphasis must be on advocacy. Standing beside someone in a time of need is a very important thing, to make sure that the individual is not left alone or isolated or feeling that the individual is completely powerless. We feel that true advocacy means standing beside the individual no matter what the circumstances are, no matter how hard it gets, and maybe accepting a lot of criticism at times from people in society. But if we don't stand beside the people we say we advocate for, then we are not true advocates.
Helping a person find his voice is something that is extremely important to people who are vulnerable and never had a voice. I myself was once a person who didn't have a voice in society and people thought that I couldn't do things. People thought they had to make decisions for me. I wound up in segregated, isolated places. If people had recognized the need for me to have a voice a long time ago, maybe I wouldn't have been as wounded as I was in going through segregated workshops and segregated group homes and other segregated places. Most of our members in People First are people who have had a life of segregation and isolation. Maybe if our members were people who were thought of as people who had the right to have a voice a long time ago, we wouldn't be sitting here right now speaking to you about the importance of having a voice.
We don't need any more people in our lives to control our lives. We need people to empower our lives. We feel that advocates who have the right kind of principles and the right kind of heart to get involved with people and recognize that people need friends, people need to be loved, people need to be nurtured in a true, meaningful relationship, that's how we empower the lives of people. That's how we make them less vulnerable.
It is important that an Advocacy Commission must be run by vulnerable people themselves, not service providers. We have had enough people in our lives who have controlled our lives. We must be able to set the destiny for teaching advocates how to advocate for us. We must be able to somehow reach out to people and be able to teach people, and maybe people will teach us, about how to advocate for the most vulnerable.
The independent advocacy system must be independent from the government and at the same time be supported by government. You are the people who control this province; you are the people who actually have a lot of say in what kind of politics go on and what kind of decisions are made. You are the leaders of this country and we feel that we have the right to expect you to support an independent advocacy system.
1440
It must not be something that is here today and gone tomorrow. We're in a world where we talk about cutbacks. We feel that this is something that must not be cut out of people's lives once it begins to operate. We feel that we must be able to count on the leaders of this country to make sure that once an advocacy system is set up, it is set up for good; it is a lifetime support, not a support that is going to be cut off some time down the road. People will be hurt again. People will lose trust in you again, and maybe that trust will never be restored after that.
We believe that an advisory committee made up of family members and service providers will increase the vulnerabilities of the commission members. This is an issue of who has the power to direct the work of the commission. The advisory committee should be made up of people who have demonstrated their commitment to advocacy; their powers must be limited to providing advice only.
We feel it is important that this committee be made up of people who are community advocates and people who generally might have some knowledge of how to advocate for people in the right way. We feel that this committee must be limited to only advising the commission, because the commission must have the power to decide what advocacy looks like. We're talking about a commission of people with disabilities having the power to empower us, the vulnerable people.
We support the amendment that will exclude community agencies offering services to contract with the Advocacy Commission. We recognize this recent change and we appreciate it very much.
The Advocacy Act should only go through if it includes the right of all people labelled with disabilities. This is a fundamental right with People First of Ontario that we've taken position with. We believe that all people with disabilities, regardless of how they communicate, can communicate. We know there are people out there who people think can't communicate because they can't verbalize themselves physically, but we think it's time and it's important for people to recognize that we all have different communication skills.
Somebody who's biting their arms in an institution, in a back ward, can be saying to you: "I'm frustrated with this place. I'm frustrated with living here. Nobody's paying attention to me. I'm frustrated." People always take that as a violent act. Where people are abused every day of their lives, they also learn to abuse themselves because that's the only thing they have to do and that's the only reaction they ever get. Nobody ever pays any attention to them.
You can't tell me that if you were in the same circumstances, you wouldn't be doing the same thing, because you don't know that. We must not make judgements on people whom we think cannot speak for themselves or make decisions, because I think there is something inside all of us that gives us the skills to communicate and make decisions.
The most vulnerable people are the people in the most need of advocacy. We feel that the most vulnerable people generally are being left out of the Advocacy Act, and we don't feel that's right. People who have difficulty verbalizing themselves or trying to communicate their needs to someone must not be punished by leaving them out.
We must have the responsibility in trying to understand their communication, and that means a long-term commitment to developing a relationship with people who communicate differently from us, but nevertheless communicate. Their behaviour is not something that should be considered as violent. Their behaviour should be considered as trying to communicate, and we're not recognizing that. Now I'm going to turn this over to Ann West.
Ms West: People First of Ontario believes that the proposed legislation for substitute decision-making discriminates against people who are deemed not able to speak for themselves. Under this legislation, people who are so labelled would be treated differently. They would essentially have their humanity taken away, because the process would involve being assessed as being incapable of making their own decisions, then legally being replaced by someone who is given the right to make decisions for you.
The right to make your own decisions is fundamental. We believe that it is a right that all human beings must exercise in order to be full citizens. Our movement exists because in the past society took away this right from many people labelled mentally handicapped. Sometimes this was done through a legal process, but often it occurred because of an assumption that all people who were labelled mentally handicapped were not capable.
One of the goals of People First of Ontario is to speak for ourselves and make our own decisions. We know that some people may need a considerable amount of support to do this, but the fact that one may need support must never result in that person being defined as incapable.
Now I will turn it over to Pat Worth.
Mr Worth: What are some ways of helping people to make decisions? We need to put in supports for people who need and want help making decisions. We must make sure that people have support in making decisions from partners they know well and trust. These partners then would interpret these needs and desires to others. Just like ramps and elevators are needed for people with physical disabilities, support is needed for people who need help in making decisions.
We all need help in making decisions sometimes. I don't think there's anybody in this room who entirely makes decisions on his or her own. We all need the interdependence, and it should be there for everybody. We should never have a separate law saying something different. We should never exclude people from the law. If we exclude people from the right of making decisions, then we exclude people from every practical need in society.
People First of Ontario believes that advocacy should be available to all people who are vulnerable, regardless of the disability or how severe the disability is. No one is completely without ability, and the law should guarantee the right for all people to use their abilities to contribute to decisions made about their lives.
No law should allow people to be legally replaced, as they would be under the Substitute Decisions Act. Powers of attorney should only be an option for people who can understand that by giving a power of attorney, they are choosing a substitute decision-maker. For people who don't speak for themselves, decision-making must be interpreted within trusting relationships, and it is essential for the law to meet this need. Doctors and other service providers may need protection, but this protection should not require taking away the rights of people who can't speak for themselves.
The Chair: Thank you. Questions or comments?
1450
Mrs Sullivan: I have a brief question in relation to the point Mr Worth made about supporting the removal of some non-profit community agencies with respect to the provision of advocacy services: subsection 7(2), page 6 of the bill.
You spoke positively in your opening remarks about the role of volunteers in providing advocacy services as well, along with the role of paid advocates. One of the things we've found interesting as we've been going through this act is that the intention is that the commission would have authority over all advocates, including specifying their training, their accountability and so on, through regulation.
One of the things that has concerned some of us as we've looked at the bill is that this particular section may well mean that certain agencies in certain communities which provide other services, perhaps group home services or whatever, would be excluded from providing advocacy services with this provision in the bill.
I wonder if you think it's appropriate that this occur and why. Why should an agency that is community-based, that may be the only agency in an area providing those services, not also be able to provide advocacy services and be under the aegis of the commission in terms of the requirements for training and the accountability of the advocates?
Mr Worth: I do think the amendment is appropriate. The reason why I think this is clear to us and People First -- group homes are still a segregated service. It's not independent; it is an agency that operates a segregated service.
We believe people who are segregated will always be vulnerable. We believe service providers provide an agency, but that doesn't necessarily mean advocacy all the time. It becomes a conflict sometimes. How can a service provider advocate for an individual and an agency? There are times when service providers run into tough battles when the agency disagrees.
There's also the fact that the service provider does have more power than the individual. You provide a service for people who are vulnerable, but you provide a segregated service. People who are vulnerable are voicing their feelings about going out to work, going out into community homes and going out into their neighbourhoods, places where we want to be with family members, neighbours and people we get to know just naturally.
It doesn't happen naturally in group homes. Group homes are restricted places. I lived in a group home. I was told when to go to bed, when to get up, what to eat. I had to go to a sheltered workshop, I had no choice in that, and I was very poor. I didn't have a choice.
Ms McGill: I'd like to ask you a question, Pat. Do you believe an organization that runs sheltered workshops, sheltered residential services and services in general can also do advocacy? That seems fundamental to what you're asking.
Mr Worth: It can do advocacy sometimes, but I don't see how it can be a part of the independent advocacy system, because this advocacy system is about empowering the powerless. It's an independent system that is set up for people with disabilities to have a chance to have their say in advocacy and be able to run an independent system so that advocacy is independent.
Ms McGill: Is a person working in a sheltered workshop likely to go to the sheltered workshop employer and talk about the difficulties in his life at that sheltered workshop?
Mr Worth: No. Most of them I know are too afraid.
Ms McGill: So that's part of the issue.
Mr Jim Wilson: I think part of your concern, if I got it correct, was that perhaps improper assessments will be done or that an assessor may deem someone incapable improperly, simply because the assessor doesn't understand the communication of the person. First of all, tell me if that was part of the concern. Second, how can we, through this legislation, improve upon that? The way it's left now, as you know, the qualifications and process that an assessor will use are being left to the regulations.
Mr Worth: I'm not sure what the question was.
Mr Jim Wilson: I wrote down here that people most vulnerable, first of all, may be left out of the Advocacy Commission; ie, those not able to speak for themselves may at times be assessed incapable, when in fact they're capable. I can see the problem. Part of the problem is, I think, that it's not spelled out very clearly here exactly who these assessors are and how they go about making their assessments.
Ms McGill: Do you understand the question?
Mr Jim Wilson: I'm sorry. It's the way I am phrasing it.
Ms McGill: Maybe I can try to rephrase that. You're asking whether or not People First of Ontario believes there is a problem in how people are --
Mr Jim Wilson: Assessed.
Ms McGill: How the decision is made about who is deemed incapable of making their own decisions. Is that an issue for People First, about how it's decided who can make decisions for themselves?
Mr Worth: I think the issue with People First is that we know there are people who think there are people who cannot make decisions and cannot communicate. I think our message here is that everybody can communicate. Everybody has a skill to communicate; if not verbally, then in some other ways. We just don't listen. We need to listen harder to people who are trying their best to communicate and are trying to say they're frustrated.
We need to feel for a lot of people we are talking about, people who cannot verbalize themselves, people who have trouble communicating their feelings to people. I think part of the problem is that we don't listen to their feelings. We think they cannot communicate, so we just don't communicate with them. We make the decision they can't communicate, that they can't decide.
Ms McGill: So would People First of Ontario want someone to assess someone as being incapable of making a decision?
Mr Worth: No. We don't need any more labels. We have had enough labels, and legally deciding that people are mentally incapable just lowers their self-esteem. It makes them feel they can't do anything. It doesn't make them feel good about themselves.
Mr Jim Wilson: For the advocates to be called in, there is a requirement in this legislation that they be deemed incapable, that at least there be a question of their ability to communicate, as it were.
Mr Worth: Yes. We disagree with that requirement.
1500
Ms McGill: Maybe I can clarify that, as it relates to substitute decision-making. Is that what you're referring to, Mr Wilson?
Mr Jim Wilson: Yes. So specifically in substitute decision-making, okay, you can see it. I understand.
The Chair: We have three questioners -- Ms Carter, Mr Owens and Ms Akande -- so perhaps you'd be brief.
Ms Carter: I agree pretty well with all that Patrick Worth has said about what should happen. The difference is that I believe Bill 74 does meet those requirements almost as far as is humanly possible.
First of all, it's not just paid advocates that we're looking at. The bill does specifically say that volunteers will continue. If you want to look at that, that's on page 21, subsection 34.1(3): "Nothing in this act prevents a person who is not authorized under subsection 7(4) from providing advocacy services, as long as the person does not purport to provide the services on behalf of the commission."
In addition to that, people who work for volunteer community agencies can function on behalf of the commission, so we have every possible means of incorporating volunteers, and really the paid advocates are just going to be a kind of last resort. We've been told there will probably be only about 150 of them in the province so what they're really doing is bringing a kind of expert backup.
It's also important that because we will have the commission and the advocates, we also have the powers that are granted to them, so they can get access to people and they can look at records and so on. It's that kind of thing we're doing in this act, trying to empower those who are helping the vulnerable. That's really what we all want.
Also, I think there is provision here for making sure that communication will be made with a vulnerable person if it is possible. That means leaving no stone unturned to find out what this person really does or doesn't want. So the question of uninstructed advocacy becomes relevant only when you're looking at somebody who is totally incapable of communicating. You've told us, and I think we believe it, that there are very few people to whom that applies. I'm just wondering what we need to do to the act to accommodate what you're saying, because it seems to me that we do agree pretty well already.
Mr Worth: The Advocacy Act very severely limits people who have problems with communication and have to communicate differently. You put limitations on those people. Their rights to an advocate must be respected as much as somebody who can verbalize.
Ms Carter: As I say, I think every effort will be made. If people communicate just by blinking their eyes or something, still they can express an opinion.
Ms McGill: A clarification on that, Pat: Ms Carter asked if there is anything in the bill that People First of Ontario would like to get rid of entirely. Your position on the substitute decision-making aspect of the bill has been outlined. I think that might be --
Mr Worth: Yes, that part I would like to see dropped.
Mr Owens: I would like to start with a comment and then a question to either ministry staff or to the parliamentary assistant. Mr Worth, in terms of your comments with respect to advocacy being provided by the service provider, I can't agree with you strongly enough that I think there's an inherent conflict for those employed by an agency advocating for individuals who are either resident in that agency or employed by that agency.
No matter how well meaning people want to be, there is a potential for conflict. If we look to associations like the Adult Protective Service Association of Ontario, I'm sure they can provide us with a litany of difficulties they've had with their advocates advocating against the person who signs their paycheques.
I take to heart your comments with respect to cutbacks and the fact that all the politicians sitting around this room will at some point in their careers cease being politicians in elected positions. But people like yourself and Ms West will continue to have to live within the system and it is clearly inappropriate to set up a system and leave groups like yourselves hanging.
My question, to either the parliamentary assistant or to the ministry staff, is with respect to individuals who are non-verbal. Is there a presumption made that these individuals are incapable and what kinds of steps are in the process of being taken to ensure that these individuals' rights are going to be protected, as capable people's rights appear to be, within this legislation? What's currently being worked on?
Mr Malkowski: I'd like to refer this to Mary Beth.
Ms Valentine: The section in the act that I think would most specifically address that is subsection 15.1(3), the clause that basically states that the advocate is not in any way to take any action unless every effort has been made -- "all reasonable steps" is the phrase -- to determine whether the vulnerable person is incapable.
The issue of communication is definitely being addressed from the standpoint of accommodation. In looking at this type of service, being again disability legislation, the issue of accommodation for persons with all different types of ability has to be very clearly addressed, both in considering funding and training and considering the types of service and equipment requirements that will be available. There would be the expectation that if there was an interpreter required, a Bliss board required or whatever the situation was, there would be every onus placed on the advocate.
Mr Worth: The point about assessment is that we don't feel people should have to submit themselves to an assessment to ensure that they get advocates or not. This goes back to the whole assumption that someone's mentally incapable and you're missing the point. We're saying that every person has a gift, every person has an ability and every person has an ability to communicate in some way. I'm simply saying that an assessment is not a way of listening to people; an assessment is a way of judging people.
Ms Valentine: Could I clarify? There's no assessment required to obtain an advocate. The issue is one where perhaps if we think of someone who has been in a car accident and is completely unconscious, completely incapable of communicating in any way, that person may well require advocacy under a certain circumstance, or there may be very specific situations under very limited circumstances where someone is unable to communicate.
You may want to address that further, Patrick, but that is where the intent is and it does not require an assessment. It requires an onus on an advocate to do everything possible to try to get instructions from the person. It's not an assessment of whether the person is capable or not; it's whether the advocate can find out what the person wishes him to do.
1510
Ms McGill: I have a question at this point in relation to the serious harm section where access to advocacy has to do with whether or not an advocate can determine that the person either is directly in serious harm or is apt to be in serious harm, because there are restrictions on whether someone is deemed not to be able to speak on his own behalf and on his access to the advocacy provisions, are there not?
Ms Valentine: Yes. The issue there again is a restriction on the advocate, that the advocate is only able to act in a situation where there is a risk of serious harm to the health or safety of the person and is not able to get instructions from the person. Only under those circumstances is an advocate able to act without instructions.
Mr Worth: But that was saying that the person's life has to be in jeopardy first.
Ms Valentine: A risk of health or safety is what it says.
Mr Worth: That's what we don't agree with.
The Chair: Time's up. We have other presenters waiting right now.
Ms Akande: I think it's an important point. If you would bear with me to make one --
The Chair: Very briefly.
Ms Akande: I think one of the things we haven't differentiated, and I know that Ms Carter referred to it, is that there are really two levels of advocacy. There is primary advocacy to which all associations would subscribe -- people, neighbours, family -- and then there's the advocacy of last resort around which we have fashioned this legislation.
No one is suggesting through this legislation that any of that primary advocacy would be denied or restricted to any individuals who required it, and so all individuals would have access to advocacy at all levels. The only thing we have designed legislation around is for making sure that there are provisions for situations of last resort.
The Chair: Mr Worth, Ms West, Ms McGill, on behalf of this committee, I'd like to thank you for taking the time out this afternoon and giving us your presentation.
Ms McGill: There are copies of the brief if you want to pass them around.
ONTARIO ADVOCACY COALITION
The Chair: I'd like to call forward our next presenters from the Ontario Advocacy Coalition. A reminder that you will be allowed a half-hour for your presentation. The committee would appreciate it if you'd keep your remarks to about 15 minutes to allow time for questions or comments from each of the caucuses. As soon as you're comfortable, could you please identify yourself for the record and proceed.
Ms Joan Fussel: Thank you very much for inviting us back today to discuss the amendments to these bills. I'm Joan Fussel. I'm co-chair of the Ontario Advocacy Coalition on which I represent Concerned Friends of Ontario Citizens in Care Facilities. With me are David Giuffrida, who is the acting coordinator of the psychiatric patient advocate office -- he will primarily address the Consent to Treatment Act -- and David Baker, executive director of the Advocacy Resource Centre for the Handicapped. He will primarily address the Substitute Decisions Act and I will address the Advocacy Act.
I'd like to point out to you before we get into the substance of the bills that the Ontario Advocacy Coalition represents 30 member organizations across the province. Among our organizations, we have organizations which represent each of the categories that are mentioned in the Advocacy Act.
We feel it's fair to say that the Ontario Advocacy Coalition, because it's so broadly based, is as close as you can come to representing the community at large of vulnerable people who will be affected by all these bills.
Personally, I am a family member of someone who was in a nursing home. I'm not a lawyer. I'm an ordinary person, though my colleagues are lawyers whom I've invited because of the technicalities of Bills 108 and 109. I'd like you to know that most of the members of the coalition are not lawyers; they're ordinary people. Many of them are people who themselves have disabilities.
I'd like to commend the government and the people working within all the sponsoring ministries for the great effort they have made to listen to the different points of view that were presented to you in the first round of public hearings. I think they've made a tremendous effort to take all those into consideration, to balance them and to make some positive changes in all the bills.
I also want to thank and commend all three political parties for your cooperation with each other in agreeing to proceed with the bills -- because I know that was in question at one time -- and to work together. I hope and trust that will continue.
The coalition feels particularly strongly, as we have all along, about the Advocacy Act. It is the central issue which caused our formation. There have been some criticisms of the Advocacy Act in the press over several months in the past. It's been discouraging to read them because, almost without exception, they've been based on misrepresentations of what was in the legislation.
The act is innovative, and it's understandable that some will feel threatened by it and find it difficult to comprehend its basic element of empowerment of vulnerable people. It's legislation that's very badly needed and it deserves to be subjected to well-informed and well-intentioned scrutiny to ensure that in its final form, on third reading, it will have the best possible chance of fulfilling its purposes.
Within the act itself, we're particularly pleased that the issue of conflict of interest between service providers and the advocacy system has been addressed. A new concern we have is about the advisory committee of family members and service workers.
This is obviously a very fair intention to address concerns of family organizations and service providers. We can accept it, but we have in juxtaposition with that some very grave concerns over what was left in the bill, which was the exception concerning organizations to be involved in the appointments advisory committee process, the exception being organizations representing people with neurological disabilities.
Those organizations, as the bill is now written, do not have to consist of a majority of people with neurological disabilities. All the other types of organizations, the other categories, have to represent the people themselves, and that exception still stands.
Frankly, it isn't fair. It isn't fair to the other categories where people are speaking for themselves. It isn't promoting self-advocacy. It is allowing well-intentioned family members to continue to speak for people with neurological disabilities when they obviously have advocates in that that they have their family members. It's other people who do not have family members to speak for them who will not be represented by those organizations.
We feel that you've made a very fair concession to your detractors by adding the advisory committee of families and service providers, and it is certainly not necessary and not acceptable to keep this additional concession to people concerned about family members with neurological disabilities. You should let the people with the disabilities speak for themselves.
1520
Another issue concerns non-instructed advocacy. Several amendments were introduced to Bill 74 with the intention of extending advocacy in certain circumstances to persons who are deemed incapable of instructing an advocate. These amendments authorize an advocate to act in such situations, but only "if there is a risk of serious harm to the health or safety" of those persons.
We believe this is too restrictive. It's unacceptable to create a legislative scheme in which the most vulnerable persons of all will not be entitled to the full scope of the assistance an advocate can offer.
These amendments will mean that an advocate will be unable to do anything for a person who is suffering harm that does not appear to be serious until the point is reached at which the threat to the person's physical wellbeing does become serious. Any concerned person should be entitled to intervene in order to rescue a vulnerable person from situations in which he or she is experiencing or will likely experience serious harm.
Where such a situation becomes known to an advocate, the peril the person is in is tantamount to instructions to the advocate to act on that person's behalf. Also, as you know, often instructions can be determined in non-verbal ways. An advocate should be able to act on those instructions as well.
To move on to the question of an additional member for the appointments advisory committee, this again directly addresses one of the amendments brought forward by the government. There is an attempt to produce a balance by giving the Minister of Citizenship the authority to name three members of the appointments advisory committee rather than two, as the original bill read.
This amendment was apparently introduced to the bill in order to ensure that the appointments advisory committee will have an odd number of members and will consequently not find itself deadlocked, but we think this tie-breaking additional member should be another senior. There is a preponderance of organizations representing various types of disabilities, and we've no objection to that, but the balance and the tie-breaking should be done by the addition of another senior to represent more equitably the large seniors population in Ontario.
In our brief you can read a detailed amendment concerning access to information. The gist of this is that there should be broader access to information for advocates, that they not just be specifically allowed to see information about that one person, but also have access to policy manuals and incident reports.
It's also important that the advocate have access to information about a third party that directly concerns the person for whom they're advocating. For example, in an institution there could be an assault upon an individual, and it would be important for that individual that the advocate have access to a report which may name that person who made the assault.
The details, of course, of our concerns about these amendments are contained in the brief, which you all have before you. I think now it would be best for time that we move on, and I'll ask David Baker to discuss with you the Substitute Decisions Act.
Mr David Baker: As was said about Bill 74, it's the position of the Ontario Advocacy Coalition that most of the changes which have been made to the legislation as a result of the initial hearing process have been positive changes and they have the support of the Ontario Advocacy Coalition.
I point out to you -- and you've just heard from People First, so you know it as well as we do -- that there are not only concerns from the professional interests and a relatively small group of family organizations about the legislation, from one perspective -- you can say on one side of the spectrum -- but there are also major concerns being expressed from a number of organizations, some of which were formerly members of the Ontario Advocacy Coalition, from another perspective; namely, they're taking the position that this legislation is far too intrusive and goes too far in taking away the rights of disabled people.
As I say, you've just heard from People First. Patrick Worth, from whom you heard, was our co-chair up until July 31, so I think it's important to understand that there are many perspectives. We are hearing within our own coalition the perspective of People First, and I think in many ways it's beneficial for you and perhaps for us as well that you're hearing that perspective, because it needs to be heard.
Having said that, let me say that our major concern with respect to Bill 108 is that it potentially will be too intrusive, and by that we mean that too many people will be found to be incapable under this legislation. Our major concern with this legislation is that steps be taken to prevent that from happening. If there is any way we can be clearer about our objectives, we should do that.
I heard Mrs Carter say it was the intention to ensure that a very small group of people be found to be incapable. If that is the case, then we are suggesting at page 12 of our brief that we revisit an issue which was raised initially with you, and that is the standard of proof in this legislation. What we are saying is that if you cannot be absolutely certain that a person is incapable beyond a reasonable doubt, then we should not be taking away a person's rights; we should not be finding him to be incapable. The requirement that there be proof beyond a reasonable doubt currently exists in the Mental Incompetency Act and is applied in a vast majority of cases where the issue comes before a judge.
I had experience with this issue in a piece of litigation which I mentioned to the committee on a former occasion, the Justin Clark case, where this issue of standard of proof was not proof beyond a reasonable doubt in the case in which I had to argue. I felt that case would never have gone to court if the issue had been proof beyond a reasonable doubt. It should never have gone to court and we shouldn't allow cases where there is a reasonable doubt to go anywhere near a court.
We should be clear about it, and we should be able to tell people like Patrick Worth that there are not going to be members of his organization yanked before a court in circumstances where there is not clear evidence that goes beyond a reasonable doubt in being satisfactory to a court. That position should be clear in the legislation and it should have always been clear in this legislation.
There are a number of other issues we'd like to touch on briefly.
In this legislation and in the consent to treatment legislation, there is the issue of the definition of "spouse." Currently, that would include an estranged spouse, so a situation could arise where an estranged spouse who has been in some dispute, has perhaps been abusive of the person whose capacity has been removed, will be introduced as the substitute decision-maker.
It is our position that as is the case with "others" under the legislation, there be some test. We suggest that the person be currently living with the individual, that that be the criterion which would be added to define "spouse" so as to deal with this particular issue. It is not a theoretical issue. It is something which arises on regular occasions now under the current legislation.
I'm at page 7 now and discussing the issue of the public guardian and trustee as statutory guardian of property.
Essentially, what has been done in Bill 108 is to create a comprehensive, fair mechanism for dealing with people who are unable to deal with their property. Unfortunately, to this point in time the government has chosen to leave the unsatisfactory and discriminatory informal process under the Mental Health Act as applying to people who are in a psychiatric facility.
It is our position that there is no justification for denying psychiatric patients the same procedural protections available to all other incapable people in Ontario. The mechanisms are there in Bill 108 which would satisfactorily address the needs of people in this situation.
1530
At the bottom of the page we point out -- and this is again consistent with what I was saying about our concern that this legislation only be used as an absolute last resort. In our initial presentation to you we had called upon you to do away with the concept of partial guardianship because we were concerned that concept would be used to include a greater number of people under this legislation.
We have, again consistent with our goal to minimize the number of people who are found to be incapable, decided to recommend to you that greater particularity be used when identifying exactly what incapacity it is which is being referred to.
Halfway down page 8, there is the issue of the guardian's authority to admit a person to a psychiatric facility. We are concerned that the provisions of the Mental Health Act governing involuntary admission to a psychiatric facility and all the procedural safeguards which are set up to deal with involuntary admission will be circumvented through the too casual application of the substitute decisions legislation. It's our position that the provisions of the Mental Health Act are adequate and sufficient for dealing with this issue. Our concern in particular is that there will in fact be a significantly higher number of people who are found to be incapable as a result of this legislation. That we recognize as being inevitable.
Our concern is that the current application of the Mental Health Act results in virtually no one being involuntarily admitted by a person's guardian. We are concerned that there will be a significantly larger number of guardians of the person under this legislation, with the result that there will be a significantly higher number of involuntary admissions to psychiatric facilities than is currently the case. We feel it's inappropriate because the Mental Health Act provisions comprehensively should govern in these circumstances.
Page 9, the issue of cattle prods: The time does not permit to go into great detail about this issue. We feel it should suffice to say that Ontario is the only jurisdiction in the country which continues to permit professionals to use cattle prods for aversive conditioning. It has consistently been our position throughout that this is an outmoded mechanism which should not be permitted and in particular should not be legitimized with specific reference in this legislation, albeit an attempt to control the use of cattle prods. We urge the government to reconsider its decision to permit this to go on in Ontario.
On page 10, the issue is restraint and seclusion. We are concerned that the substitute decisions legislation will have application in settings where there are not safeguards in place as there currently are under, for example, the Mental Health Act, which is currently virtually the only place where you find restraints and seclusion being used. If you like, these decisions will be made in people's homes and in communities. People may be restrained and secluded in circumstances in which they currently cannot be, nor should they be.
We feel at a minimum it should be mandatory that when this power is being used a written report be filed stating that these restraints are being used, where they're being used and why they're being used so that there is some mechanism for overseeing the use of this power.
The issue of electroshock as opposed to electroconvulsive therapy, at the bottom of page 10, I think is a simple point of clarification which I would hope the government would have no objection to making. Clearly it is not the government's intention that ECT be used as aversive and circumventing in that way the application of the Mental Health Act. However, some people feel it's important to make that explicit. I would hope that could be done.
On page 11, halfway down, the one change that we felt was a serious step backwards in the legislation was the decision to omit what was formerly paragraph 63(3)6, which stated that it is the responsibility of the guardian to take the person's current wishes into consideration if they can be ascertained. We don't feel it's too much to ask of a guardian that there be that degree of human interchange between two individuals.
I can tell you, because I've argued this issue in court as well, that there is case law to the effect that a person's current wishes are to be taken into account by the guardian. For the benefit of the lawyers present, it's a case called West v West out of New Brunswick. It's an important issue. The effect of having had this paragraph in the legislation and then removing it -- again from a technical, legal standpoint -- is to overrule the application of that particular case in this province, and I think that's precisely the wrong direction to be going in. I would ask you to put the paragraph back in.
At the bottom of page 11, the need for the public guardian and trustee to produce guardianship plans: Basically the issue here is that all guardians are required to produce plans as to what it is they're going to do with their authority as guardians and tell the court what it is they intend to do. An exception is made for the public guardian and trustee who is presumably seen as being infallible.
Those of us who have had dealings with the public guardian and trustee, particularly in years past, have unfortunately found that to be far from the truth. We ask that the plan be produced, because that is the only way in which the public guardian can be held accountable for the way in which he or she exercises the authority of that office over an individual.
I turn to page 12, to the issue of proof beyond a reasonable doubt. I would ask, if you feel at all responsive to the issues raised by Patrick Worth, that you consider this as the least we can do in order to assure him and to make clear what our intentions are in this legislation. We state that if it's not an open-and-shut case, it should never go anywhere near the court. We should not be tampering with people's very fundamental rights as individuals. I believe Ann West said it involves taking away a person's humanity. That's how serious it is to make this kind of decision about somebody. If we can't be sure about it, we shouldn't start that kind of process.
Now David Giuffrida will address Bill 109.
Mr David Giuffrida: I'm aware that time is short. I propose in the interests of time not to address each of the items listed in the portion of our written presentation beginning on page 12, but of course I'm willing to respond to questions about them if you wish.
I want to address my comments first to the point about the definition of treatment, in the middle of page 13. Section 2 of the Consent to Treatment Act says that the act "applies in respect of treatment," which is a defined term, "administered by health practitioners," which is a defined term. As goes the definition of "treatment," so we really define the scope and application of the act.
There has been a lot of fine-tuning of the legislation to ensure that the kinds of due process protections it provides are proportional to the invasiveness of the clinical intervention. We don't need a rights adviser visit if someone is having a bandage changed, for example. That scenario doesn't please anyone.
The proposal before you today is that the definition of "treatment" be essentially confined to the definition of "controlled act" under the Regulated Health Professions Act, plus behaviour modification. The consequence that would flow from that is that the due process protections in the Consent to Treatment Act would only apply to the more invasive sorts of interventions that are enumerated in the list of controlled acts under the RHPA. They include inserting a hand or instrument into an opening in the body, setting a bone, drawing a blood sample etc.
It's our intention -- I hope this might be one that is positively received by health care providers as well -- that we achieve some proportionality here and that the interventions, like a visit by a rights adviser, are limited to those situations where it is a controlled act happening within an institutional setting, the setting in which there is more potential for coercion.
Putting a time limit on substitute consent to treatment: We feel strongly that someone who is acting as a substitute decider in respect of an incapable person be in touch with that person, hopefully dropping in on him, seeing how he is responding to the treatment. What we would not like to see is someone who gives consent over the telephone in January and is not heard from again for the next 12 months.
The office of the official guardian, when it is called upon to give substitute consent to treatment under existing legislation, typically gives it for a maximum of three months. Then it wants to hear back how the person's doing. That seems like common sense and we'd like to see consent by substitutes limited to three months.
Seven-day delay before treatment is administered: For people who might have the misperception that those of us who work for patients' rights are exclusively trying to concoct ways of keeping treatment from people, I want to point out that three of the points I'm going to be speaking to you about are ones which could result in people getting treatment who would not get treatment as the act is now worded.
For example, in several places in the legislation, if a person is determined treatment-incompetent and just suggests that he might be considering applying to the review board to review it, the provider has to back off for seven days before the treatment can start. We think that's too long. If the person says, "I'm thinking of applying to the review board," we think a rights adviser should show up and assist him to apply if he wishes to apply. If he doesn't apply, he has 24 hours and then treatment can begin. We think that's more efficient.
The need for substitutes to have personal contact with the patient. That's something I've addressed. We don't think it's sufficient if there's just telephone contact or someone who hasn't heard from the patient in years is contacted from another province. They should be more actively involved.
Suspension of treatment pending an application to the review board. Again, the existing provision in the Mental Health Act is quite inflexible. If patients apply to the review board to review a determination of treatment incompetence, they can't get any treatment, even treatment they'd very much like to have. Sometimes that means they've deteriorated mentally to the point that they cannot present themselves in the best fashion at the review board hearing. We think if the provider wishes to provide the treatment, if the patient wishes to have it and the person who would be the substitute wishes to consent to it, they should have that treatment during that interim period.
Who may apply to the review board for directions? Wishes expressed when competent are pivotal in determining whether there will be consent or refusal by a substitute.
The Chair: Excuse me, could we have a five-minute recess while we fix up the sound system? This committee will stand recessed for five minutes.
The committee recessed at 1543.
1551
The Chair: I call this meeting back to order. Our apologies, Mr Giuffrida. Perhaps you could read your recommendations where we lost you, I believe, and then continue on.
Mr Giuffrida: Thank you, Mr Cooper. I am loathe to subject the committee to another summer rerun. I'm going to summarize what I've said to date, maybe even with minor variations.
Beginning on page 14, it is our recommendation, as shown in the middle of the page, that a time limit be put on substitute consent to treatment of three months, so that there's an obligation that the health care provider check back with the substitute decision-makers and make them aware of the health state of the person on whose behalf they are giving the consent.
I'd like to draw the committee's attention to two points at the top of page 15. In clause 5(2)(a) there is a fairly exhaustive list of the ingredients of informed consent, but conspicuously absent is the obligation on the provider to tell you what's wrong with you. We think that in that list you should have the phrase "the nature of the health problem."
Down to the next paragraph, subsection 5(3) says that consent may be "express or implied." This indeed is true, but out of context it could be an invitation to ignore the requirements of voluntariness and informed consent. I think it should better read, "Voluntary, informed consent to treatment may be express or implied." It is only a point of clarification of assertions made elsewhere in the legislation.
Turning to about the middle of page 16, seven-day delay before treatment is administered, we believe that the mandatory seven-day suspension of treatment when a person indicates a wish to apply to the review board is too long, and provided he has the opportunity to confer with his rights adviser and get assistance in completing the application form, he should be given 24 hours after that point to make up his mind and then treatment can begin if he doesn't apply.
In the middle of page 17, the need for substitutes to have personal contact with the patient: We would require the substitute to indicate that during the last year "he or she has had ongoing personal communication with the person to the extent their respective abilities permit." Our wording is carefully chosen here, because we're sensitive to the fact that there might be an elderly couple where the husband is in a nursing home and the wife might find it difficult to travel 60 kilometres to visit with him. She is as involved in his life as her and his abilities permit and we would honour that kind of relationship and permit her to be the substitute. But if it's someone who just can't get around the corner to see a loved one in a nursing home, we don't think he should be the substitute.
Page 18, suspension of treatment pending an application to the review board: This recommendation arises out of real situations that have come to my attention in the Psychiatric Patient Advocate Office where a patient says: "I wish to review the determination of incompetence, because I don't believe I'm incompetent. However, I do wish to take the treatment, but I can't get it if I beg for it, because the act says `Treatment shall be suspended.'" We want to introduce some flexibility there.
Turning to page 21, who may apply to the board for directions, a lot turns on what wishes a now incapable person expressed about treatment on a prior occasion when competent. It would be wonderful if everyone reduced these wishes to writing and had it signed and witnessed and we had that kind of clarity. That isn't the reality. It won't be the reality.
There are going to be people who bring their best abilities to trying to figure out what weight to assign a statement that was made by a person two years ago about a certain kind of intervention. We think the provision that now exists in the act that allows the substitute decider to apply to the review board to get some guidance, some clarification, is a good one. Our concern is that sometimes the substitute may feel that the prior wishes are abundantly clear, but someone else doesn't, and he is the only person authorized to apply to the review board. We think, for example, that the patient should be able to apply and the public guardian and trustee as well.
We are aware of situations where people are untreated now, perhaps in seclusion, seriously disordered. This is ostensibly because the substitute is carrying out prior wishes expressed when competent, where the health care providers may seriously question whether that was a competent wish. Under our proposed amendment, if the health care providers are able to persuade the public guardian and trustee that there really is some serious doubt here, the public guardian and trustee could initiate an application to the review board. There could be a review by that board expeditiously about what those wishes were and they could give some guidance.
Let me turn to the bottom of page 23, professional background of the public guardian and trustee under Bill 110: We have noted that there's a requirement that the PG&T be a lawyer of ten-year standing. We cannot understand why that's a requirement. We can understand why there are many qualities the person holding that important position should have, including a very clear and profound understanding of the lives of vulnerable people and how best they can be empowered. We don't see that the person in that position be a lawyer.
Turning now to the bottom of page 22, in contrast, we do see a role for lawyers as chairs and vice-chairs of the Consent and Capacity Review Board. There are many technical decisions to be made by the person in that role. He or she must make decisions about burden of proof, onus of proof, who has party status, what documents are admissible etc.
The personal issues can be very strong. There can be a temptation to override the technicalities of the law because of the personal issues. We're concerned that will lead to decisions built on sand.
The Chair: My apologies again; we're down for another couple of minutes. We will have a couple of minutes of recess.
The committee recessed at 1558.
1605
The Chair: I'd like to call this meeting back to order. Once again, my apologies for the breakdowns. Mr Giuffrida, if you'd please proceed. Order, please.
Mr Giuffrida: Thank you. I was trying to guesstimate at one point when we most recently experienced technical difficulties -- at the top of page 21, I was pointing out the benefits of expanding, in section 28, the scope of who may be permitted to apply to the board to have a review of what the allegedly competent wishes expressed in the past were.
We think this is an important provision in situations where, in particular, a person is not being treated and the substitute believes it is based on wishes expressed while competent, but other people in the incapable person's life, who may have heard other utterances at different times, may not be as convinced that the utterances that the substitute is relying on were made during a time when the person was competent etc.
As the legislation stands now, the only avenue available to people who feel that the substitute is not accurately interpreting competent wishes is to apply under the Substitute Decisions Act to have the substitute removed. That's quite a significant and, one could say, aggressive act, and I wouldn't expect substitutes to be removed unless it could be shown that they were acting in bad faith or with significant incompetence. We think this could be a very convenient intermediate step, to have a review at the board to clarify prior wishes.
I was then talking about where it is and is not important to have lawyers in the system, stressing that for the public guardian and trustee, it did not appear important to the coalition that that person be a lawyer, whereas for chairs and vice-chairs of the Consent and Capacity Review Board, it did seem quite important.
My point is that, among other problems with having people governing the process of the board who might not have expertise in the processes of administrative tribunals, their decisions, while perhaps sound on the merits, might be built on sand. Technically, they may not have followed due process and may in fact give one or the other party grounds to appeal. There could be more appeals resulting from making wrong calls on process in the first place. As a rule, appeals will take some time, and as a rule, treatment will be suspended pending the appeal. So there are any number of reasons why it would be better to have the people in place who can make those calls correctly in the first place.
Finally, on page 24, the suggestion in the middle of the page under "Authority of the Mental Health Review Board to order transfers" also relates to a provision that would allow the Consent and Capacity Review Board to review the decision of a substitute to authorize the admission of a person to a psychiatric facility. As David Baker has pointed out, we don't believe, as a rule, that a substitute decider ought to have the authority to compel someone to come to a psychiatric facility.
Our point is that too often in reviewing civil commitment, the review board, under the existing legislation and under the Mental Health Act, has to decide whether the person can be released to the street or retained in exactly the same setting that he is in now, an institutional setting. The review board may be of the opinion that the person is in too restrictive a setting. It might be a double-locked ward, for example, or he may have very few privileges. However, if they conclude that it would be irresponsible to discharge the person directly to the street, they can do nothing but confirm the certificate and maybe make some obiter, non-binding comments in the decision.
We think it would be a useful improvement to give the review board some more refined tools than the simple ones they have now: either lift the certificate or confirm the certificate. With the blunt instrument they have now, they can only but confirm the certificate 85% of the time. We'd like to see the Mental Health Act amended to give them the opportunity and circumstances they deem appropriate to say, "This person's not yet ready for the community but doesn't need to be in as restrictive a setting in that hospital as he now is," and to give effect to that.
Trusting in the technology to prevail, I'm going to pause there and give you an opportunity for questions.
The Chair: Thank you very much. Mr Kwinter?
Mr Kwinter: I have a question, and it has to do with one of your recommendations at the top of page 7 dealing with changing clause (a), the definition of a spouse. I appreciate the rationale, given the example you use. I want to give you the other side of the coin and I just want to get your response on how you deal with it.
Let's say we have a spouse and one of the partners is confined to an institution and has been for years. They still have a relationship. That spouse, for whatever reason and whatever his or her illness is, has to be institutionalized. Under your recommended amendment, that couple, by no stretch of the imagination, legally or in reality, have been living together. Would that in fact remove the ability of that spouse to make decisions on behalf of the partner who is in the institution?
Mr Baker: You may be aware that under the Divorce Act the issue of separation of spouses is in issue, and if a spouse is residing in an institution but does not have an intention to be separate from his spouse, he's not considered to be separated for the purposes of the Divorce Act.
While we've used the word "living" here and might have chosen the more technical legal term of "residing," I think our intention is to deal with the issue on the basis of a mutually agreed-upon decision to be living separate and apart, rather than a physical separation in those terms. I don't know if that answers your question, but that was our intention.
Mr Kwinter: My problem is that I see different people taking different interpretations if that recommendation were to be adopted. I see it setting up problems and I just want to get your reaction to it.
Mr Baker: We could add the word "intending to be living apart" or something like that, or "wishing to be living apart." There may be other words that could be selected. I'm suggesting the Divorce Act might serve as the precedent because there it's the intention of the people which governs, not the physical arrangements. A person may be working in a distant country and in that sense be separated from the spouse, but the intention is that they are living together in the sense of husband and wife, and that's what we're getting at here.
Mrs Sullivan: I just want to say on behalf of the committee that we appreciate the extensive work that you've put into dealing with the redrafted bills. Your comments are thoughtful and we wish we'd had them before, I suppose, because we could have asked more questions about them.
There are a couple of comments I want to make, one of them with respect to Bill 108, section 75, criteria that you propose that incapacity be determined "beyond a reasonable doubt." The two issues I want to raise in that context are, first of all, the criterion associated with the assessors, about which we have no information because there's nothing written down in any of the bills about who will be making those assessments and, second, the criterion that you could establish beyond a reasonable doubt of incapacity.
Where would you find either one of those things and how can you be so definite in legislation, given that the decision would have to be made not only by the assessors but also by the advocates, for instance, under Bill 74 in terms of determining whether a person was not only incapable but vulnerable?
Mr Baker: Your first comment was a very generous one relating to the effort we put in. I'd like to say, just for the record, that we're aware of the effort that you personally have put in. I recall, when the amendments to this package came out, you had stayed up till 4 o'clock the night before and, over that evening, read them all and proved to us that you had read them all. So we're not the only ones who've done our homework.
Turning to the issue of proof beyond a reasonable doubt, the current standard in the Mental Incompetency Act is proof beyond a reasonable doubt on the application. When the court is reviewing the medical evidence which is submitted in affidavit form, the court must be satisfied beyond a reasonable doubt that the person is incapable; 99% of the cases go on the basis of that standard.
This represents a dilution from that standard. That's been the standard which has been in operation in this province for probably 100 years, and from our standpoint there's no justification for moving away from that. If there is a doubt, then there are other, less intrusive mechanisms for intervening, whether it's an advocate, the Mental Health Act or a number of other mechanisms which are available to us.
What Bill 108 does is it says you no longer have a single legal right as an individual in Ontario. That's the impact of 108. There is no other statute which in any way approaches it in terms of intrusiveness into a person's humanity, as Ann West from People First said. In legal terms, it takes away every single right you have when you're found to be incapable under Bill 108.
What we're saying is if you're not 100% sure about that, we don't want judges making decisions, we don't want people being yanked before courts and we don't want People First members being intruded upon in any way with this legislation. They should not be.
The government assures us that's not its intention. The way to make that clear is to set a standard which is beyond a reasonable doubt. In our opinion, that is not asking too much of professionals. They are to provide their professional opinion. It's the court which must decide beyond a reasonable doubt. The professional merely offers his or her professional opinion as to the capacity of the individual, and the court, as has been done for 100 years in this province, has to weigh that evidence.
Mrs Sullivan: When the assessor takes that information with respect to his or her recommendation of incapacity, one would expect that there would be criteria for the assessors. Do you not see a weakness in Bill 108 in the fact that there are no criteria specified? There is no training, there is no proficiency or accountability required in legislation for the assessors.
Mr Baker: We have the Weisstub report. I must say I have my own reservations about the Weisstub report. In my view, it formalizes the whole process of finding incapacity beyond what is practical in most communities, certainly throughout the north, and I think it's unnecessarily formal, frankly.
None the less, that is available to the government, and in terms of designing mechanisms for doing assessments, that information is available. If courts decide that is the standard of evidence they're going to require, then that's fine. But to my mind that's a separate issue from this issue of the standard we're asking the court to assess the evidence against. Those are two separate issues.
Certainly a court is going to feel more comfortable with the comprehensive assessment process, multidisciplinary teams and the involvement of highly specially trained people in the area of doing assessments. That's wonderful. I think it's theoretical, frankly, in the north, where those people are not available to us, and I think that's why there was some hesitation in building it into the legislation.
The issue was addressed during the Fram task force process, with which I was involved from 1983 or 1984 until 1987 or 1988 when we wrapped up. We discussed these issues at great length and the decision was that because it was not practical in the north and we shouldn't build it into the legislation, at least at this point in time. I must say I was persuaded that it couldn't be made to work in the north; the people just aren't there.
Mrs Sullivan: It's fairly shocking though, isn't it, that one region of the province is basically left out because it's an underserviced area and therefore criteria aren't defined for the entire province, including the north?
Mr Baker: Absolutely. We're currently looking at a legal issue, whether it's discriminatory against people with AIDS because they cannot be treated in their home communities and are in effect forced into the city of Toronto because they cannot get physicians to meet their care requirements. Certainly that's a major issue for the province, but it's much larger, I think, than just the issue of assessment of capacity.
Mrs Sullivan: Mr Chairman, as this is the last presenter of the day, could I beg the indulgence of the committee to ask one more question with respect to Bill 109?
The Chair: If it's brief because, in fairness to all the other presenters, these people have gone over.
Mrs Sullivan: Right, I understand that, but it is a coalition.
Mr Jim Wilson: You're on a roll, Barbara.
Mrs Sullivan: I'm on a roll.
I want to ask, with respect to Bill 109, about an issue with which I have some concern. In fact you have raised it as something that you favour. That is that the consent to treatment, you suggest, should be defined as requiring consent for controlled acts, that treatment should be defined as controlled acts, but also that the consent should be required only for controlled acts that occur or take place in a facility or in an institutional setting. I am very concerned about that. It seems to me the consent should be for the treatment and not the place where the treatment takes place. I think you're dead wrong.
Mr Giuffrida: Perhaps I failed to make clear how we would see the scheme working. The definition of "treatment" would be equated to controlled acts plus behaviour modification. That being the case, treatment in any setting would require informed voluntary consent. The act would apply to it.
What I'm talking about is confining the situations in which there's a mandatory rights adviser visit. That's the kind of due process protection I was talking about that we think could appropriately be limited to circumstances where the patient is 12 or over and it is a controlled act or behaviour modification that is happening.
1620
Mrs Sullivan: Why would you want that difference in the rights adviser's involvement if it was the same procedure, the same consent and the same determination of incapacity, and instead of it taking place in a hospital, the decision being made or the treatment recommendation being made, it takes place in a doctor's office, all the other circumstances being the same? Why would you say there should be a rights adviser in a hospital but not in a physician's office?
Mr Giuffrida: Let me say first of all that in any setting the person should be told of the health care provider's determination of incompetence. If they're 12 or over and it's a controlled act, they should be told about their right to have a rights adviser; they should be told that much.
What we are saying, as far as automatic rights advice goes, is that where the health care provider contacts the rights adviser and there's a visit, we would limit that to situations where it's in any hospital and a controlled act or behaviour modification. Your question is, why distinguish based on the setting? Any place you make a delineation like that will not be perfect. There'll be ones close to the line that you might wish were on the other side of the line, but generally speaking, institutional settings are ones where the patient has a greater risk of loss of autonomy and there's a greater risk that the consent won't be voluntary.
Mr Jim Wilson: I too want to thank you for your brief today. I find the tone of it to be very helpful and the approach to be somewhat more moderate than the last time we met.
Mr Owens: Mr Moderation himself.
Mr Jim Wilson: Hey, listen, I'm trying to be nice. There's really no need to ask me how long I stayed up to read the 199 amendments.
It's important, as we approach clause-by-clause, Mr Chairman, and perhaps this is best directed through you to Mr Fram, that on page 11 the group does make the point to ask the question why the clause, "The guardian shall take the person's current wishes into consideration, if they can be ascertained," was deleted.
Second, following on what Mrs Sullivan said in terms that the proof of incapacity should be beyond a reasonable doubt, I wonder if you can enlighten us what the discussion among ministries was pertaining to that.
I was also going to ask a question about treatment and controlled acts but I'll defer that one, so perhaps just those two to let us know, because certainly we were thinking along lines similar to this group.
Mr Steve Fram: On the first one, really, the one on page 11, listening to current wishes, we just moved it. If you look at page 36, we moved it down to subsection (3.1) from subsection (6). We reorganized it but the provision is still there:
"(3.1) In deciding what the person's best interests are, the guardian shall take into consideration...(b) the person's current wishes, if they can be ascertained."
So we didn't leave that out. I'm glad you asked that.
The other question, on the standard of proof, is a very difficult issue. I know David has been a strong believer in "proof beyond a reasonable doubt." The dilemma is that in various settings, as Mrs Sullivan pointed out, you're going to have assessors deciding on the balance of probabilities, you're going to have physicians deciding on the balance of probabilities, and you come down to the judge and you're going to say it has to be beyond a reasonable doubt.
When you start playing with the various elements of that, of when this applies and when that applies, and when someone believes that the physician has made the wrong determination and goes to court, for example, for a guardianship order or for a review board order, you get into all sorts of knots in terms of changing standards and inconsistent results.
On the other hand, the point philosophically that Mr Baker made is one that we all feel very strongly attached to. As he pointed out, it was one of the recommendations of the committee report which I chaired.
Mr Jim Wilson: I'm not a lawyer but I'm familiar with the standard, having worked with the courts in my career. Does anybody have any comment on what sort of equivalent safeguard could be put in there in particular, as this group has pointed out, to try to meet that very real concern that's been presented by People First?
Mr Fram: No one has come up with a better suggestion than the criminal standard of proof.
Mrs Sullivan: Which is?
Mr Fram: Which creates some real problems in seeing it as a system-wide standard.
Mr Owens: My question is both to Mr Baker and then to the Ministry of Citizenship with respect to the comments on page 2 of the brief, the issue of individuals with neurological disabilities and the exemptions of organizations from participation in the commission. I'd like Mr Baker to perhaps expand a little bit on that, and then ask the ministry why that was done, as there are different types of neurological disabilities and people function at different levels, and some of these individuals function at extremely high levels.
Mr Baker: Thank you very much for asking the question. As you may be aware, it's certainly an issue which is not only strongly held by the Ontario Advocacy Coalition but it's very strongly held by the Advocacy Resource Centre for the Handicapped, so thank you for giving me the opportunity to address the issue.
For us the issue is a very fundamental one. When I spoke to the minister about this issue a week ago last Monday, she said it was a compromise. I think there have been many compromises in this bill which have been constructive compromises. It's my position that this is an unprincipled compromise. It is a compromise with a fundamental principle about why we have advocacy legislation, why we're trying to empower vulnerable people. It's the kind of compromise I would hope the government would reconsider because it's the kind of compromise I think creates a fundamental flaw in the legislation. My organization feels very strongly about this.
I think the effort that was made by the government to satisfy a small group of family organizations -- notably the Ontario Friends of Schizophrenics -- was misguided. They, as an organization, are an organization of supportive family members. No one denies that they have the best interests of their family members at heart. The resources of the Advocacy Commission will be such that there will be little done in the way of advocacy for their sons and daughters because of their involvement, and that is as it should be and that is what we would expect.
That organization well understands that it is going to see little benefit from this legislation. When they come before you attacking the advocacy bill, they are basically saying, "For our sons and daughters, we could spend this money better somewhere else." But what they are not taking into account is all the people who do not have supportive families about whom this legislation is intended.
The idea that we can compromise to satisfy this group or a small group of other organizations is, to my mind, unprincipled because it is pandering to that kind of purely political overture which is being made, and I think it's wrong that the government gave in on that point because this is about empowerment of vulnerable people.
Mr Malkowski: I'd like to refer this to Mary Beth.
Ms Valentine: I cannot respond to the original drafting of the bill, certainly. One of the significant issues that has been a policy decision for the minister has been in trying to determine whether in fact there are groups, and to the best of the ability of the minister's office and the office of disabilities there has not been the ability to determine that there are self-help groups, consumer groups, at this point that would be able to represent themselves on the commission.
The policy issue for the minister, the philosophical issue, certainly is that the minister would like to see people represent themselves the same in that category as in other areas. But the decision to date has been based on the factual information that there have not been those groups identified and that rather than have no representation of people who are in tune with, know, understand those issues, that has been the policy decision to date. This issue has been identified, certainly by Mr Baker, very recently with the minister and I anticipate it will be an issue that the minister will want to at least revisit, review, at the end of the committee hearings after hearing submissions from all groups that come forward.
Ms Fussel: We all know that once a bill is enacted, though, it's hard to change. If this is left in as it is, what incentive will there ever be for the organizations to form? It's going to be more difficult for them to form. There is a real need for them to have a bit of support from government to try to come together now.
Ms Valentine: Again, Joan, I think your concern is very valid, and a very concern that the minister has addressed. At this point, her policy decision has been that should there be the need to bring forth amendments in three years, five years or whatever, as self-help groups begin to form and there's time for new elections and so on, that the ministry would be quite prepared to do so at that time.
The Chair: Ms Fussel, Mr Baker, Mr Giuffrida, on behalf of this committee I would like to thank you for taking the time out today in coming and giving us your presentation.
Ms Fussel: Thank you very much.
The Chair: Seeing no further business before this committee, we stand adjourned until 10 am Monday morning.
The committee adjourned at 1633.