ONTARIO FEDERATION FOR CEREBRAL PALSY
CANADIAN MENTAL HEALTH ASSOCIATION, METROPOLITAN TORONTO BRANCH
PERSONS UNITED FOR SELF-HELP IN SOUTH CENTRAL ONTARIO
NADIA
DIAKUN-THIBAULT
MICHAEL KLEJMAN
INTERNATIONAL ASSOCIATION FOR THE RIGHT TO EFFECTIVE TREATMENT
CITY OF TORONTO COMMITTEE ON THE STATUS OF WOMEN
TORONTO PEOPLE WITH AIDS FOUNDATION
CONTENTS
Wednesday 21 February 1996
Advocacy, Consent and Substitute Decisions Statute Law Amendment Act, 1995, Bill 19, Mr Harnick /
Loi de 1995 modifiant des lois en ce qui concerne l'intervention, le consentement
et la prise de décisions au nom d'autrui, projet de loi 19, M. Harnick
Ontario Federation for Cerebral Palsy
Tim Kinney, coordinator, participation projects program
Ontario March of Dimes
Jim Grant, chair, government relations committee
Emily Atkins, government relations coordinator
Carmen Thériault
Linda Davis Bonar
Canadian Mental Health Association, Metropolitan Toronto branch
Steve Lurie, executive director
Persons United for Self-Help in South Central Ontario
Bill Gallagher, chair
Queen Street Patients Council
Jennifer Chambers, facilitator
Nadia Diakun-Thibault; Michael Klejman
AIDS Action Now
Maggie Atkinson, co-chair
John Miller, member, steering committee
International Association for the Right to Effective Treatment
Dr Andrew Dalrymple, chair, Ontario chapter
City of Toronto Committee on the Status of Women
Audrey Swail, member
Jane Koster, member
Toronto People with AIDS Foundation
Eric Andrew Dow, executive director
Tracy Ribble, employee
Dr William Butt; Dr David Molloy
Ontario Dental Association
Dr Roger Howard, president
Linda Samek, director of professional affairs
STANDING COMMITTEE ON ADMINISTRATION OF JUSTICE
Chair / Président: Martiniuk, Gerry (Cambridge PC)
Vice-Chair / Vice-Président: Johnson, Ron (Brantford PC)
*Boyd, Marion (London Centre / -Centre ND)
Chiarelli, Robert (Ottawa West / -Ouest L)
Conway, Sean G. (Renfrew North / -Nord L)
*Doyle, Ed (Wentworth East / -Est PC)
Guzzo, Garry J. (Ottawa-Rideau PC)
Hampton, Howard (Rainy River ND)
Hudak, Tim (Niagara South / -Sud PC)
*Johnson, Ron (Brantford PC)
*Klees, Frank (York-Mackenzie PC)
Leadston, Gary L. (Kitchener-Wilmot PC)
*Martiniuk, Gerry (Cambridge PC)
*Parker, John L. (York East / -Est PC)
*Ramsay, David (Timiskaming L)
Tilson, David (Dufferin-Peel PC)
*In attendance / présents
Substitutions present / Membres remplaçants présents:
Brown, Michael A. (Algoma-Manitoulin L) for Mr Chiarelli
Caplan, Elinor (Oriole L) for Mr Conway
Hastings, John (Etobicoke-Rexdale PC) for Mr Guzzo
Johns, Helen (Huron PC) for Mr Hudak
Kells, Morley (Etobicoke-Lakeshore PC) for Mr Tilson
Marchese, Rosario (Fort York ND) for Mr Hampton
Also taking part / Autres participants et participantes:
Ministry of the Attorney General
Chetner, Saara, counsel, treatment decisions unit
Clerk / Greffière: Bryce, Donna
Staff / Personnel: Swift, Susan, research officer, Legislative Research Service
The committee met at 0903 in committee room 1.
ADVOCACY, CONSENT AND SUBSTITUTE DECISIONS STATUTE LAW AMENDMENT ACT, 1995 / LOI DE 1995 MODIFIANT DES LOIS EN CE QUI CONCERNE L'INTERVENTION, LE CONSENTEMENT ET LA PRISE DE DÉCISIONS AU NOM D'AUTRUI
Consideration of Bill 19, An Act to repeal the Advocacy Act, 1992, revise the Consent to Treatment Act, 1992, amend the Substitute Decisions Act, 1992 and amend other Acts in respect of related matters / Projet de loi 19, Loi abrogeant la Loi de 1992 sur l'intervention, révisant la Loi de 1992 sur le consentement au traitement, modifiant la Loi de 1992 sur la prise de décisions au nom d'autrui et modifiant d'autres lois en ce qui concerne des questions connexes.
ONTARIO FEDERATION FOR CEREBRAL PALSY
The Chair (Mr Gerry Martiniuk): Good morning. Welcome, members, ladies and gentlemen. Our first submission is the Ontario Federation for Cerebral Palsy, Tim Kinney, provincial coordinator.
Mr Tim Kinney: On behalf of the Ontario Federation for Cerebral Palsy, I'd like to comment that some of the rhetoric around Bill 19, as rhetoric tends to be, is simplistic and incomplete in describing the complexities and needs of this situation, specifically the part about putting advocacy back in the hands of families and individuals. Certainly we must do all we can to encourage individuals to advocate for themselves and, where necessary, to encourage support of family and significant others to assist people to the extent that one might need.
Clearly government did not like the solution and costs associated with the Advocacy Commission, and concerns have been voiced about some of the powers in areas such as substitute decision-making, but Bill 19 goes further than that to also eliminate the basic advocacy and rights advice services.
To my knowledge, advocacy has always been in the hands of vulnerable people and their significant others. It is as a result of the frequently crazy-making experiences of trying to get us other people to listen that people came to believe there needs to be some form of organized support for individuals and families in the province. There was a need prior to the commission and there will continue to be a need after the commission is disbanded.
A little bit about the Ontario Federation for Cerebral Palsy: It was formed 50 years ago by member groups that consisted of families and individuals with CP and many other disabilities, given the time period. Our mandate was to work primarily with groups, because we thought the local organizations would be able to take care of anything in their area. With individuals or people who phoned in, we would mostly just provide information. We've helped many groups develop services over the years.
I guess one of our assumptions was that families and individuals could pretty much look out for themselves, especially where services were organized by family organizations -- family board members and so on. Similarly, as individual concerns might come up, we felt they would be dealt with fairly and expeditiously. For years, when individuals contacted us, we would simply just refer them back to the same agency or to another group in that area geographically.
Over time, and given our mission of helping groups develop services for people, we were really struck that a large part of the volume of calls and the mail were not about those other organizations in the towns and cities but were about the very ones that had been formed to support people with disabilities.
In terms of putting advocacy back into the hands of people, these were the families and the individuals themselves who were calling us and saying that they'd exhausted their efforts in trying to get some attention to matters and they needed some further help. Over the years we've got into that more and more, of trying to support people, and particularly around agencies that provide direct services to people. We found it was very difficult to get their attention because they believed they were the leader in the community around issues for disability, so how could they be in the wrong in terms of serving somebody with a disability? There just wasn't room for that with some agencies, although there are many that do very well.
The federation encourages people to speak for themselves. Frequently after we'd talked to them and encouraged them to talk to the agency, they would come back to us weeks or months later, often because there just was no customer service process, no way to hear complaints; or if there was, it seemed to just stall off into endless meetings and not get addressed. When this happened, we would support the person to try to negotiate something that would at least resemble some form of due process. But often, if the earlier efforts had failed, people really weren't interested in due process and it just wouldn't go on from there.
Calls to government, the funding ministries, would tend to just die at that point, because they say we have to call the agency to see what the situation is. If the agency felt there was no problem, then there was really no problem and no way to pursue it further.
Beyond that, the only way to get attention would be to start writing letters to your MPPs or other people, and this would take a lot of courage. Contrary to what people often say, that they're a bunch of complainers, it takes a lot of courage, because it's often going to incur the wrath of the people who are providing you a daily service. If it's attendant care services, where they're getting you out of bed, that's where you have to go home at night after your talk with the MPP, or maybe the MPP's called there. Often staff can be either just in a very quiet way unfriendly or very openly very unfriendly to the fact that whatever started off as a concern between you and them has now got outside the organization.
With respect to talking about situations where people are not respected, I'm talking about two general categories: one where it's involving directly a staff or a family member or an associate of theirs in the community or, at a second level, where there have been concerns made known and the process just isn't working. So that, we feel, is also a very serious part of disrespect.
I've touched a little bit on the need for accountability with agencies that serve people. There is often a lot of confusion. An agency like ours, we've encouraged somebody to talk and they've tried the process. At the point where we might come along with somebody and talk to an agency or sit in on the discussion, people are saying, "What are you doing here talking for these people?" or whatever, and that's not what we're there for. We're there largely because the agencies or people involved have refused to listen to the person in the first place. So we're saying, "Please give this person a hearing, and from whatever comes out of that, let's please see a due process that we could agree would look at least reasonable."
That's very difficult, because even where they're a member group, we've lost about five member groups over that over the years. They said: "Well, we'd rather just dissociate ourselves. We're no longer affiliated." They'd send a letter to all of the government ministries and so on, and at that point -- we never had any authority with them in the first place -- they can just say, "We refuse to talk about it," and there's no further recourse for people.
0910
I think for many citizens and possibly for MPPs, we might assume that because vulnerable people tend to be served by the sort of apple-pie, not-for-profit organizations of Ontario, this ensures that people's best interests are always respected. While there are thousands of really wonderful staff, family members and others who are involved with people in their everyday lives, and these people are to be really highly commended, available information indicates that vulnerable people are very much at risk in Ontario today. Unfortunately even in 1996, accountability to people's customers, even where there's a direct contract relationship, is only as good as the paper it's written on. It's entirely up to the agency whether it honours that or not. If the customer feels it's not honoured, there's really no recourse under most funding mechanisms that we come to deal with.
Appeal policies: As I said, they're often just on paper. For example, a single mother in the Windsor area had half her hours per month cut off from home care. I suggested: "Well, why don't you just appeal it? That should be fairly straightforward. You seem to have good cause for it." She phoned me back a couple of days later to say, "They have no appeal policy in home care." It's just not expected to be questioned, whatever their decisions are. In this case they were cutting half of her hours per month. She's got two small kids at home, a lot of responsibility. Our concern was that there was just no venue to have this heard. We talked to the ministry: "Well, sorry, that's where the policy is at, at this point. That's all that's required."
I just have some examples of people's experiences. I've been talking generally. One group of individuals who became a group I guess just out of having common concerns with a particular provider -- this is an attendant services provider -- finally tracked down the president of the organization and thought, "Well, if we can't get a response from the staff, we'll talk to the president." They had an impromptu meeting with him, about an hour and a half. He was busy at the time, said he would get back to them shortly. Six months later, they were getting very frustrated and wondering when this meeting was. There were calls back and forth. So they took it in their hands just to write out all their issues, about 10 pages describing the nature of them, and sent them to the board saying: "You'd agreed on a meeting. This is an ancient issue." They also CCed it to the Ontario federation and one other advocacy group, plus to the funding ministry.
The provider was quite horrified that these people were telling tales on them. The provider complained to the funding ministry that they weren't following the due process. By all accounts, there really just was nothing that resembled due process. Further, the board had its lawyer send a letter, at our expense, chiding them for referring to themselves as vulnerable people -- this was a year and a half ago, when there was a lot of discussion about vulnerable people in the news -- and threatening to sue them for libel, indicating to them that action could be taken on the basis of libel if they continued to talk about this agency's deeds in public. It wasn't really in public; it was to an advocacy group, plus to the funding agency.
Another customer of this same agency was only allowed to appeal a decision after we intervened and told the agency it would really be important -- they were a member group at the time; no longer -- that if you're terminating somebody's services and they have a bone to pick about it, that you give them a chance to talk about it first. So after we talked to them and to the funding ministry, they reluctantly agreed to give the person a hearing. Based on the information they found at the hearing, they found that there was no reason to take her services away. She still has services. But it was over $8,000 in bills between the various meetings and the workup to this. She lives separate from her family because of her support needs, but her husband and family put up some $8,000, and that's not to be recovered. The agency probably spent a similar or larger amount for their own board's lawyers, and that was all paid for by the government. So in terms of this need for support and advocacy, there really are two levels of support available to people.
Another customer with the same group -- I don't mean to pick on this one, but they just provide a lot of examples -- dared to disagree with a decision about how their lifting would take place. Because they disagreed with it, their services were going to be terminated. So they said, "Let's have a third party." They had one third party come in and the same manager again overturned that, saying, "I don't agree with that third party." They had another third party come in and she didn't agree with that third party, and again with the fourth one. It finally went to a formal appeal. When they found out that these same people who had done these assessments were going to be at the appeal, they decided that they shouldn't have the appeal at that time; it should be later. So for undisclosed reasons it was postponed, and it's never happened yet. I think that was September 1994. The person has ultimately been successful at finding services at another agency.
But that's a very difficult aspect: If the relationship breaks down, even if it was the fault of the customer, in most cases there's only one agency that provides services in a given community. So with no recourse and no alternative, these are very difficult circumstances that people face. A number of people just decide to put up and shut up and go along with it.
In another community, a woman who requires about eight hours of support a day as a result of a motor vehicle accident came home from university one day to find out that her services were terminated. It was something to do with a dispute the night before. The agency had unilaterally decided that everybody needs to be lifted in a Hoyer lift, that's the only safe way to do things -- and that's a questionable decision -- but they gave somebody a little bit of training and then left her on night shift. So when this woman was going to go to bed the night before, she had untrained staff who put her in a Hoyer lift. We later found out, through having an assessment, that she was far too light -- she was only about 90 pounds despite being 20-odd years old -- to be in a Hoyer lift and it was dangerous for her. Her experience the night before was 20 minutes of swinging around the room. So she finally told the woman, "Get me out of this thing and put me to bed the normal way." So the next day she came home from university to find out that she had no services because she failed to comply with a safety requirement.
There was no hearing of it. After about five weeks, though, through advocacy intervention the agency reluctantly agreed to take her back, but it was not very friendly to her. As a lot of former staff came forward and testified later or explained later, there was real organized racism and disrespect for this person, stemming from one person who was in a team leader position. Because it was a smaller operation, she was the team leader; she did all the training, the hiring and the firing. Head office was miles and miles away and she was their sole source of information as to what the problem was.
So when things went sour and they found out that she had a lot of information to back up her side that the agency might be in the wrong, they spent I don't know how many thousands for a top lawyer in their community from a highly respected firm, and that's who we had to deal with. He had spent three days over the weekend talking to staff. They came up with an idea that they didn't need to talk about these other issues because the reason she no longer had the services was that staff felt she was rather dangerous to deal with.
Very discouraging; December 22, not a good time to find replacement services. But thankfully, the assistant deputy minister at the time, Mr Ennis, did intervene and provide her emergency services for a period of time. She's lived for the past two years on a series of emergency services. I had a call from her yesterday while I was preparing this. She's been told by March 15 to either reduce the services she needs by about 25% or -- well, there are no ifs; that's it. She's been told she needs to find another provider. But again, there's no other provider in this community. She's 35 miles outside of a major community where she could live, but with eight-hour-a-day needs, that really doesn't fit into most agencies' spectrum of services.
So she remains in a very difficult situation. She's lost two semesters in her master's degree, the first time because she lost services and again when this was all up in the air December and January; she didn't go back to school because there was just too much going on.
The federation knows, from our experience, that individuals and families want help in advocating for people when they need help and that help that is available often isn't sufficient to really overcome, because we're talking about really powerful forces at times. So for me just to take an hour off my job one day and go and help somebody in a meeting, there needs to be a lot of follow-through. I think there is room for professional advocacy.
0920
The OFCP would like to see a provincial body with a mandate to support the advocacy efforts of individuals and supportive others, and it's necessary because the existing groups just can't provide enough support. Often people fall between the cracks. The CP group might help people, but another group might not help with this type of advocacy.
A large part of the structural problem we deal with is that the government has farmed out services to a hodgepodge of agencies -- many of them reputable, many of them not. There's no way of distinguishing them. There's no energy put into distinguishing which agencies have a quality of service prior to renewing contracts; they're just turned over, rolled over year from year, regardless of whether there's a thousand complaints or one about that agency. Where appeal processes exist, they rarely loop back outside the agency and particularly not back to the funding ministry.
We also think that some form of body is needed, and it could also help in the area of education of people. We would never think that a body was going to provide all the advocacy, but just something there that would support the efforts of people that are already very much needed.
With that, I'll turn it over to you.
Mr Rosario Marchese (Fort York): Thank you for your presentation, Mr Kinney. The examples you give are the kinds of examples that we've heard from other people that make a strong case for advocacy, and I think they make a strong case for government-involved advocacy. The government members say that the government should not be involved in this kind of advocacy, that it's too intrusive. The commission was just too wasteful; $18 million was just too much. One other suggestion: "Maybe you could have reduced that. Wouldn't that have been helpful?" I guess it's not a sufficient answer. They say: "There's too much intervention; rights advisers are interventionist and that's not helpful. We should just help volunteers and organizations to do their job better." I'd be interested to hear the kind of comments they make again in this regard.
We don't think that's adequate. We think we need to get to these abuses and we think what you say here is critical, that you need a provincial body with a mandate to support the advocacy efforts of others. We need a body that has authority, because you talk about how people have no authority. When people go through an appeals process, there's no way to deal with them unless you have a higher authority in the ministry being able to deal with them. Do you have a response to what the government is telling you, that maybe we can help you do your job a little bit better by, I don't know, perhaps training or helping volunteers better? Is that the answer?
Mr Kinney: I'm not hearing that we're going to get any support. We were very encouraged to know that there was some kind of advocacy that was coming in the province. So I kind of started thinking that I could start turning maybe some of these more difficult cases over, or ones that I just simply couldn't follow through on, because as a non-profit organization it's very difficult that we take in -- we're used to largely ignoring them, thinking that there are local people taking care of them. As we worked through our denial and realize that our member groups and other groups weren't looking after things on a regional basis, we got involved, but there's still so much that we're not able to deal with. I don't know what kind of support will be there for people.
We're looking at moving to a competitive system where contracts will be -- we're opening up to for-profit. I think it will really help that there be more than one provider in any jurisdiction; that's critical, be it for-profit or not-for-profit. We need a measure of quality. One side is that the funding group needs to be requiring quality, but I think the people who have to live with the results of our efforts -- I've helped evolve things, you guys have helped fund it -- those people need some kind of support when it's all not working. We can't just say let's wait another 10 years and see how maybe this thing will develop over time and get better.
Mrs Marion Boyd (London Centre): I want to thank you for coming. I think it's very hard for an organization that is an umbrella organization for a lot of other organizations to talk about the problems of those organizations. I think it's important, though, for us to be very clear, as you say, that although there are many well-meaning people out there, appeal processes and the way to deal with this just isn't there yet, and it becomes more and more urgent with long-term care going out into the community, doesn't it?
Mr Kinney: Yes, because people are unsupervised, maybe have 10 to 12 hours of training in many cases and then work unsupervised for years on end in very private situations, plus with people who cannot speak for themselves and the family's not around to supervise. So there just isn't a basis. In speaking about matters today, our organization took a stance that we would look into matters whether it involved our member groups or not. So what I'm talking about today sometimes involves our group, sometimes other groups, and other umbrellas say, "Don't look into ours, because that's our customer."
Mr Frank Klees (York-Mackenzie): Thank you for your presentation. Just for the record, I want to assure you that we as a government are in fact very interested in ensuring that advocacy is alive and well in this province. But what we disagreed with the former government on is how we're going to go about that.
You've made reference in your presentation to many government-funded organizations that should be out there providing services on the front line and you've ended up in legal debates with them about the lack of service. Our view is that the last thing we need is to add one more level of bureaucracy into this province so that you have one more government bureaucracy to get into legal debates with.
What we want to do is start to get to the root of the problem, and really I think what you've referred to is a quality control issue. It's not that there aren't agencies out there being funded. The problem is that many of the services that are being provided are inefficient and aren't meeting the needs of people in the community. What we want to do is ensure that we work with organizations such as yours to provide the kind of quality control in the community that we need, and we look forward to working with you on that.
Do you have any suggestions for us in terms of how we can get to the root problem? How can we get feedback more effectively from organizations such as yours and from end users as to the agencies that aren't performing well so that we can deal with that?
Mr Kinney: One thing: I provided you a separate piece, and it comes from an Accreditation Ontario newsletter. First, I'll address that briefly: There's need for both. I'm involved and I'm trained. One of the things is that, out of my interest and concern, I've become trained in a quality control effort. Through the auspices of Accreditation Ontario, which we're becoming a sponsor of, we will be helping organizations who are willing -- it's strictly voluntary, because there's no requirement by government -- to open up their doors and have us come in. I've spent three weeks out of the last three months visiting at agencies and interviewing not the staff but the customers. Based on methodology that was developed in the States and used across the States as an accreditation tool -- we simply don't have time to reinvent the wheel -- it's based on independent living values and philosophies about people having choice and respect.
We're doing that. We're doing the quality control. non-profit agencies are taking the lead in that. Government has helped. Comsoc helped with a small grant to get it piloted, but based on those 12 pilots, there were some good things we found. But I'll just point out on page 6 -- it's the second side and it starts with "Pilot Results" and the first side is "Bulletin Board" -- some of the key areas here that we're talking about around vulnerability are whether people choose the goals -- we found this present in five out of 12 agencies; people choose where they live and with whom -- five out of 12; where they work -- there are obvious barriers there, but still three out of 12 only; people choose the services they get in half the agencies. Remember, these are agencies that voluntarily opened up their doors to a pilot with a new tool. I couldn't argue that they're representative; I would guess that they're some of the leaders in the province, but not absolutely, because some of us may believe we're leaders when we're not.
People have friends: That was found to be present in only two out of 12 agencies where we sampled with the customers. An interview is two to four hours, plus follow-up with family and significant others. So you get a pretty good sense of how this person's doing.
People exercise their rights: This was found to be present in only five of the 12 agencies, the ones that willingly opened up their doors.
People are afforded due process if rights are limited, some kind of an appeal process in only six of the 12. We asked, "Did the staff even know that there's an appeal process?" "Well, not really. We think we're supposed to call someone if there's a problem."
0930
Mr Michael A. Brown (Algoma-Manitoulin): Thanks very much for your presentation. As I was listening to you -- some of these stories are not unusual for a constituency politician who becomes involved in them. I just listened to the government side, and it strikes me that we've seen and are seeing considerable downsizing of at least funding for groups out there that are providing these services to your community. There's less money in the system, and projected to be less and less money in the system. We're also seeing the elimination of the Advocacy Commission under this legislation. Make no mistake; that's happening. We're also finding out that while they chatter a lot about a new system of advocacy and all that kind of stuff, they're going to study it. So that means really, at least in the short term, there's nothing.
That all adds up, to me. If you're going to cut funding to services and provide fewer services, the last thing you want out there is anybody to be saying, "You're providing less services." It just makes pure common sense. We've seen an attack on benefits for disabled people, the assistive devices program, you name it -- paying a fee for drugs. All those kinds of things are happening, but I also know there's something that's very interesting happening, and that's something called -- I think it's called CCAC or whatever the name is for long-term community care, the new organization. Are you involved in that organization, in the planning of the various ones around the province, to see that the people you represent are having real input into how these organizations are structured and will provide care to those individuals in the province?
Mr Kinney: There are a number of people with disabilities, often affiliated with organizations, and also some staff associated with our member groups and other organizations, who are involved -- mainly the people are involved with the development of district health councils and have been sort of carried over, so the appearance is that there is involvement. I'm not able to really comment in a definitive way.
Mr Michael Brown: You're saying your organizations are actively involved with long-term care --
Mr Kinney: Yes.
Mr Michael Brown: -- with these organizations. The evaluations you spoke to Mr Klees about: Are those being provided --
Mr Kinney: That's only just starting, out of maybe 1,000 agencies. This is a cross-disability instrument that can be used -- maybe out of 1,000 or 1,500 agencies in the province, we've worked with 30 of them so far. Twelve of those had the funding provided by the government. The Ministry of Community and Social Services did provide the money for the pilot, and up front they said they'd provide no further funds, so they've told all their agencies they're not allowed to spend money on this tool. That's the status right now. We're hoping that as they see some of the results and as agencies can find some way to spend the $3,000 or $4,000 a year it costs to have an assessment, that our community, including the ministry and others, will come to realize that we need this external look at agencies.
It's two things. It's a learning tool -- it's not just strictly an assessment, but the people who use the tool learn, in the same time during the day, how they can pay attention, as with any good-quality tool, to involving the individual maybe in making the choice more so than the family. What we've found is that while we want to support family involvement -- that's clearly the mandate of our organization -- often staff and the people involved tend to just automatically ask the family, "Which apartment do you think this person should live in," when they could have asked the person. It's usually only when you don't have any family that you get to make the decisions yourself, for people who are more vulnerable.
The Chair: Thank you, Mr Kinney, for your thoughtful presentation.
I welcome on behalf of the committee the honourable member for Etobicoke-Rexdale, Mr John Hastings.
ONTARIO MARCH OF DIMES
The Chair: The next submission will be the Ontario March of Dimes; Mr Jim Grant, chair of the government relations committee; Bill Hoch, member of the government relations committee; and Emily Atkins, government relations coordinator.
Mr Jim Grant: I'm Jim Grant; I'm the chair of the government relations committee for the Ontario March of Dimes. Joining me today is Emily Atkins. Bill Hoch, unfortunately, is delayed. He's coming in from Hamilton and he may be joining us; I can't assure you of that.
I'd like to thank you very much for allowing us to present today. I will basically go through the submission as it is set out in the document that you've received. If there are any questions for follow-up, myself or Emily will be happy to address those.
The Ontario March of Dimes exists to promote the independence and dignity of adults with physical disabilities. Independence, as we see it, does not simply mean the ability to perform physical activities. It encompasses an individual's ability to make decisions about all facets of his or her life from the mundane to the extraordinary.
This is why the Ontario March of Dimes is concerned about the government's new approach to advocacy in Ontario, as embodied in Bill 19, An Act to repeal the Advocacy Act, 1992, amend the Substitute Decisions Act, 1992 and amend other Acts in respect to related matters. We feel that certain aspects of the new legislation may limit individual rights and freedoms.
The Ontario March of Dimes is primarily a service organization, assisting 10,000 people with physical disabilities in Ontario each year through our 58 locations across the province. We provide independent living assistance, assistive devices and employment services. While 90% of the Ontario March of Dimes' funding supports these three programs, we also offer recreation and leisure, post-polio education and group support, augmentative communication, stroke recovery, non-profit housing and medical research.
Another facet of the Ontario March of Dimes is advocacy on behalf of people with disabilities. Our volunteer board of directors is active in developing policies on social issues which touch the rights and privileges of people with disabilities.
Our policies are informed by the principle that people with disabilities should have the same freedom to make decisions about their lives as any other citizen. We therefore lend our support to measures which make it easier for people with disabilities to choose and which ensure that when others must make decisions for them, their rights are protected.
Ontario March of Dime is thus concerned that the government's new direction with respect to vulnerable persons in Ontario may make it more difficult for individuals with disabilities to achieve and maintain the independence that so many of us take for granted.
We are concerned about the effect of repealing the Advocacy Act and provisions of the Health Care Consent Act and Substitute Decisions Act which may make it easier for a person with a disability to be subjected to decisions beyond his or her control, or treatment which he or she does not desire.
We would also like to comment on the Advocacy Commission's proposal, Now More Than Ever.
Under the heading, rights advice, information and advocates: When the Advocacy Act, 1992 is repealed, the Ontario March of Dimes believes that some protection afforded people with disabilities will be lost. The Advocacy Act, and by extension the Advocacy Commission, provided important resources to persons with disabilities. Together, the act and commission were designed to help vulnerable people understand their rights and express their wishes. They were also designed to promote the rights of vulnerable people and provide means to remedy situations in which the lives of those people were at risk. With its repeal, rights advice and advocates will no longer be as readily available to vulnerable persons.
Specifically, repeal of the Advocacy Act removes all references to rights advice and advisers. Such references are removed from the other legislation as well. For example, the requirement that individuals be advised of their right to refuse an assessment and their right to appeal an assessment have been eliminated. It also eliminates the requirement that an individual be informed by the assessor that he or she has been found incapable. Individuals still have rights, but lose the guarantee that they will be informed of what those rights are.
The Ontario March of Dimes recommends that the legislation be amended to require that individuals be informed if they have been deemed incapable and of their right to refuse an assessment and to appeal decisions.
The next section is determination of best interests: We are concerned that there may be insufficient safeguards to prevent action from being taken against the wishes of persons who are deemed incapable. Under both the new Health Care Consent Act and the amended Substitute Decisions Act, the family becomes primarily responsible for substitute decision-making and consent to treatment for incapable individuals. While this is not in itself a radical departure from the old legislation, two changes cause concern.
0940
First, the definition of "family" has been expanded to include persons who are related by blood, marriage or adoption, without clarifying the proximity of the relationship. Second, Bill 19 removes the requirement that a family member make a statement to the effect that they have had contact with the incapable person within the previous 12 months and believe that he or she would want to make their decisions on his or her behalf.
While families may act in the best interests of vulnerable persons, there are no guarantees. The Ontario March of Dimes is concerned that these changes will increase the likelihood that persons in a decision-making capacity will be unaware of the incapable individual's wishes. The more distant a relative, the less likely he or she will be able to know an individual's preferences.
Since the legislation does not require that they be in close touch with the vulnerable person, relatives may be uninformed about that person's state of mind or wishes stated prior to becoming incapable. There is also the danger that family members might have ulterior motives in making decisions about an incapable family member. It is not logical to turn over protection of an individual's interests to someone who may not have those best interests at heart.
The Ontario March of Dimes therefore recommends that the requirement for personal contact between the substitute decision-maker and the incapable person be reinstated in Bill 19. We also recommend that a provision be added to require that family members be educated in the principles of substitute decision-making as set out in the act prior to assuming decision-making power.
Discrimination against people with disabilities: We are also concerned that provisions of the Health Care Consent Act may make it possible for health care practitioners to ignore the wishes of persons who are capable but who have difficulty communicating. Clause 23(3)(b) permits health care practitioners in an emergency to treat a capable individual who has difficulty communicating. This in effect removes the hospital or health care practitioner's responsibility for accommodating a person with a disability and protects them from liability should the treated individual challenge their decision.
Ontario March of Dimes recommends that the protection from liability for treatments performed when a person has difficulty communicating be removed from the Health Care Consent Act. Health care practitioners should be held responsible for their actions, regardless of the circumstances of the individual they are treating. If their chosen course of action is proper and defensible, it is immaterial whether that person has a disability or not.
Statutory guardianship: Statutory guardianship was originally intended to allow the public guardian and trustee to manage an individual's property in the event that he or she was admitted to a psychiatric facility and found to be incapable of managing property for himself or herself. Under the Substitute Decisions Act, statutory guardianship could be invoked if a person was found incapable and did not refuse the guardianship. The person was informed of his or her rights first by the capacity assessor and then by an advocate.
Bill 19 amends the Substitute Decisions Act so that the public guardian becomes the statutory guardian as soon as the person is deemed incapable by an assessor. Thus, a single assessment gives the PGT complete control over a person's property. The requirement for rights advice prior to the PGT assuming control is removed, so that the individual is informed that he or she may apply to the Consent and Capacity Review Board for a review of the assessor's finding of incapacity only after the PGT has control.
Ontario March of Dimes has two objections to this change. First, if the government's objective is to remove unnecessary bureaucracy and interference in the lives of individuals, it does not make sense to force people to apply to the review board if they object to guardianship. Time-consuming and expensive investigations and hearings will result. Our second objection is to the elimination of rights for vulnerable people that this represents.
Ontario March of Dimes therefore recommends that these amendments to the Substitute Decisions Act be dropped and the original clauses restored.
Now to the Advocacy Commission proposal: The Ontario March of Dimes believes that the proposal, Advocacy: Now More Than Ever, put forward by the Ontario Advocacy Commission has merit and should be seriously considered by the government. Creation of an independent, non-profit corporation, with a mandate to provide community development, training and education and systemic advocacy, could fill the gap created by repeal of the Advocacy Act.
After participating in the government's recent consultations around potential new approaches to advocacy after the Advocacy Act is repealed and the Advocacy Commission eliminated, Ontario March of Dimes feels that the proposal offers sorely needed leadership in this field. The consensus at the discussion group in which we participated was that independent advocacy is necessary. It was apparent, however, that the government did not have a framework in mind for providing it.
Ontario March of Dimes therefore supports the Advocacy Commission's idea. While we believe that there is room for adjustment in the specifics of the plan, we do endorse the proposed objects of the new non-profit corporation. The Ontario March of Dimes suggests that the government seriously consider this idea as a means of achieving community based advocacy without excessive bureaucracy or expenditure. Implemented as a pilot project for a specified term, the advocacy corporation could be thoroughly tested before requiring a substantial long-term commitment of funds and infrastructure.
In conclusion, the Ontario March of Dimes believes that Bill 19 should be amended. As drafted, the legislation curtails the ability of vulnerable people to control their own lives by making it more difficult for them to know and understand their rights. It makes it easier for persons who may not understand an individual's wishes to become their substitute decision-maker, and it makes it more difficult for individuals to retain control over their affairs.
It is difficult enough for people with disabilities to lead fulfilling and complete lives. Society throws up barriers in nearly every area of endeavour and discriminates against people with disabilities. Legislation which makes it more difficult for individuals to exercise their rights is counterproductive and regressive.
Ontario March of Dimes therefore urges the government to implement the amendments we recommend in this submission.
Mr Klees: Mr Grant, thank you for your presentation: some very helpful suggestions for us. You make reference in your brief that your organization provides advocacy on behalf of disabled people. For how long a period of time have you been able to do that, and do you intend to continue to be involved in advocacy?
Mr Grant: The Ontario March of Dimes actually has, as part of its mandate, that as one of its clauses, it's been doing it for some 40 years, shortly after its existence into being. We have a government relations committee whose primary function is the advocacy role. Obviously, there are corporate objectives and corporate concerns of the organization, but we are active in, for and with people with disabilities, both with the Ontario Advocacy Commission and other organizations that speak for themselves. What the March of Dimes prefers to do is work with rather than be a front person on these issues. As an agency with a mandate also for advocacy, we feel that's the best means by which to do that.
Mr Klees: You'll be prepared to continue to work with us as we evolve --
Mr Grant: Oh, yes.
Mr Klees: -- the appropriate forum for the province. I wanted just to confirm for you as well -- you referred to the Advocacy Commission proposal that has been put forward as an alternative -- we are considering that proposal as one of the options. I just want to assure you that proposal is being looked at by us.
Mrs Helen Johns (Huron): Mr Grant, I just wanted to talk to you about the concern you had with family members who weren't close to the individual and then being able to act. I was wondering, I'm sure that you're aware of section 31 that says that anyone can go before the Consent and Capacity Board to change their representative at any time. The person who has been declared incompetent can do it, as could a friend if they wished to go and say they wanted to become the substitute decision-maker. That alternative doesn't satisfy the need you have, the concern that people would have the people they want to be their substitute decision-makers?
Mr Grant: It is an option. For an organization such as ourselves, providing independent living assistance through our support service living units, experience would show that is not always the best approach to have. There are instances where family members do take advantage of those in a vulnerable condition. While I guess I agree with you that the means by which to make it happen exist in the legislation as proposed, it is something that has to be acted upon by an individual who, in their circumstances, either may not be aware of that as an option or will be in an incommunicative or incapacitated state, so that the option does not exist. Rather than having it as something that is a reactive gesture, I believe the legislation should be revised so that it is proactive in terms of that family member having to have that closer contact.
It's not so much specific to the legislation that I'm speaking to it. The reason we raise it is that, as an organization, we see that these concerns come up on an organizational basis where there is potential for abuse and not looking after the person's interests. That's why I table it here.
0950
Ms Emily Atkins: May I add a point? It's true that there is that recourse. However, with the absence of the rights advice, we feel that people may not be informed they have that avenue. That's our chief fear.
Mrs Elinor Caplan (Oriole): Thank you very much for an excellent presentation. The first question I have for you is, was the Ontario March of Dimes association consulted by any of the ministers prior to the tabling of this legislation?
Ms Atkins: We were not specifically consulted on the legislation. However, we did participate in the focus groups around the government's plans after the Advocacy Act is repealed.
Mrs Caplan: But that was after this legislation was tabled, was it not?
Ms Atkins: Yes.
Mrs Caplan: So you were not party to any formal or informal consultation with the minister prior to the tabling of Bill 19?
Mr Grant: No, we were not.
Mrs Caplan: The second question I have is around something that isn't in your brief but that I'd like your advice on, if that's possible. I think you're very clear on your recommendations around people being told of their right to appeal to the board and also of their right to know when they've been found incapable. That's clear; we've heard that consistently. While there was someone before us yesterday who suggested that the atmosphere was so poisoned that providers would not respond to a statutory requirement, frankly I think the overwhelming view is that if it can be phrased in a way that would encourage communication to achieve that goal, we might be able to do something that would be acceptable.
I think we have to try to find something that will not get everyone's backs up with the notion of the Mirandizing of the previous legislation, but that still is clear about the obligation. I've been thinking about it in this context: Rather than putting it in an upfront, statutory, "You must advise," what do you think of the idea of saying -- this legislation, as you know, says that any provider or family member or substitute or anyone who consents to treatment in good faith, and the treatment is provided in good faith, is free from all liability. What if there was an exception to that liability that said you wouldn't have an exemption from liability unless you were satisfied that the patient had been told that they were either incapable or unable to understand and communicate, and if the patient had been informed of their right to appeal to the board? Would that be a way around a statutory obligation to inform?
Mr Grant: I agree with that wholeheartedly. I think that is a good approach to ensuring that --
Mrs Caplan: I don't think you can have it both ways, that you don't have any obligation statutorily to inform and yet you're free from liability. It's been troubling me since yesterday and I just came up with this idea of, "Well, you get the freedom from liability unless...." Do you think that might work?
Mr Grant: Yes. I agree with that.
Mrs Caplan: The other point is that there has been some confusion over whether or not caregivers should be able to be substitute decision-makers. Under the substitute decisions legislation they cannot be guardians, but there is permission for a caregiver to be able to make decisions for purposes of treatment as a substitute decision-maker, I believe, in certain rare circumstances.
What about a clause -- this would not apply to families who might be future heirs -- that would be what I would call a conflict-of-interest clause, so that if the caregiver would benefit materially, then they could not. They could be in an employment relationship as, for example, an attendant might be if the person wanted that attendant to make decisions. Would you have any comfort with that notion of a clause that clearly said if you were in a conflict situation you'd require Consent and Capacity Board consent before you could assume that role?
Mr Grant: Yes, I would agree with that. I would be interested to extend on your thinking there to know how a conflict would be determined.
Mrs Caplan: I think a fee-for-service relationship where you would benefit by ordering services for the person would be one that was clear. There might be others, and where there was any question or concern by an organization such as yours you could then make an application to the board.
Mr Grant: Yes, that's a good idea.
Mrs Boyd: Thank you very much for coming this morning. One of the things I was struck by in both the previous presentation and yours is that originally many of the groups like yours formed and were fairly disease- or condition-specific, the cerebral palsy association and March of Dimes connected to muscular dystrophy and that sort of thing. But what I hear from both of you is that what is happening in the disability community is an acknowledgement that whatever the condition or the disease that has created the disability, there are more things that people have in common than differences, and this cross-disability approach is beginning to be the favoured one by many of the large associations. Am I correct in that?
Mr Grant: Yes.
Mrs Boyd: My understanding was that one of the real objectives of the Advocacy Commission was to foster that cross-disability approach so that in fact we stop doing things because we have an interest, because we have a loved one who happens to be in this particular position, that we know the situations and the barriers facing people are similar no matter what their circumstances, and really trying to stop that divide-and-conquer issue that has really plagued getting changes to community acceptance, to the kinds of supports people have. Am I right on that?
Mr Grant: Yes.
Mrs Boyd: You would see another function of a replacement for the Advocacy Commission as being that cross-disability encouragement, that ability for us to look at the barriers rather than the specific disease people face?
Mr Grant: Yes, and in our involvement with the Advocacy Commission prior to this -- March of Dimes is a sitting member -- great strides were made in that area, because it's not always easy to break down those sort of cross-disability barriers, but it was a very good exercise and it's one that should continue.
Mrs Boyd: One of the things we found in all the discussions around long-term care is that there still is a huge gulf between those who become disabled as a result of becoming seniors and those who have been disabled for most or all of their lives. So the real issue, as we really look at the problems people face, is that the realities of the barriers are the same; the difference in lifestyle and focus is different. For most of your clients, the effort is to become more independent. For most seniors who become disabled, the idea is how to maintain an independence already there and yet have the supports you need as you go into more and more disability.
It really is necessary for an overview, for some group to be helping associations to overcome the barriers between them and really stop what I would say, and I don't mean to be harsh, but what has tended to be a bit of a competition over clients. Am I correct in that, that really none of you has enough resources to do what you want to do, but clients often feel that their effort to be independent, even from the helping associations, is prevented by that sort of ownership people have of people because they first became connected to those associations.
Mr Grant: I think associations will always have areas of specialization specific to their own client base, but it does not preclude that for the purposes of common barriers, as you mentioned, they can be addressed in a unified fashion.
Mrs Boyd: Those specialized agencies are mostly around the research funding and the kind of focus for research, isn't it, to try and deal with a specific condition that has sort of won the hearts of the association?
Mr Grant: Yes.
1000
Mr Marchese: I'm one of those people who believe in rights advice and one who believes that governmental advocacy is critical, that we can't just leave it to individuals out there and to the moral responsibility of everybody to adopt it magically somehow. The government has to do it.
It's interesting, when people are suffering and people talk about the various cases of suffering of people with disabilities, that that somehow is almost assumed when we talk about how that intervenes with other people's rights, where somehow it's controversial or adversarial to have rights advisers; if you have these sad stories that are being told and nobody there is able to have the authority to intervene, that that shouldn't take precedence over an organization that somehow is not delivering, and that that is called intrusive, is called government intervention. For me, it's incomprehensible.
The government members say, "We're considering the proposal by the commission, the $3-million proposal," but I don't believe them, because when they speak they say: "It's interventionist, it's a bureaucracy, we don't need it. What we need to do is support volunteers out there." So when they say, "We're considering that option," I frankly don't believe them.
We thank you for the kind of history that you bring and your support to advocacy and we think your submission is very, very useful to us.
The Chair: Mr Grant and Ms Atkins, thank you very much for taking the time and trouble to come before our committee. We appreciate it.
Mrs Johns: On a point of clarification, Mr Chairman: Mrs Caplan, I just want to ask you, what you had suggested there you envisioned would bring about a lot of challenges within the court system, both for consumer and health practitioner, and increase the burden and make it maybe more litigious than we want it to be. I was unsure about how you thought that would go. If there was no protection from liability, do we move into the court system, which I don't think anybody wants to do?
Mrs Caplan: I do think people who have been wronged have to have some recourse and I don't think it would unduly burden because it would give an incentive to ensure that people were told of their incapacity and rights. So in fact it would be a positive incentive to ensure that happened and therefore you wouldn't see the litigation. But surely the litigation would be a protection for those whose rights had been abridged.
Mrs Johns: Well, except the --
The Chair: Thank you. I thought this was supposed to be an opportunity for making inquiries. I was just doing it while Ms Thériault got organized.
CARMEN THÉRIAULT
The Chair: Next is Carmen Thériault of the firm of McMillan Binch. Welcome.
Ms Carmen Thériault: All right. Perhaps I should tell you a little bit about myself and my firm. I am a lawyer and a partner of McMillan Binch, which has offices in Toronto and Mississauga. We're part of a national partnership with offices in Vancouver and Montreal. We serve a broad range of clients -- large, small, domestic, foreign, public, private -- and two of our principal areas of practice are health law and estate planning. In that context we routinely provide advice to individuals, hospitals, health care facilities of other kinds and health professionals.
Since the existing legislation came into effect in April 1995, we have advised many individuals, many hospitals, concerning the implications of the legislation, procedures and policies that should be followed to reflect its provisions and how staff members of hospitals and financial institutions should be educated to ensure that the legislation is complied with.
Although most people I think would support the basic principles behind the legislation, the practical reality in the experience of many of my clients is that it has created a system and procedures that are to some extent unnecessarily complex, costly and adversarial in nature. So we view Bill 19 as a very positive development in that in addresses some of the most serious concerns that have been expressed to us by clients, and I'd like to go through some of the key sections with you.
First of all, we view the repeal of the Advocacy Act and the elimination of mandatory rights advice as it now exists as a positive development. The practical reality of the existing system is to cast an adversarial net over the relationships of doctors, patients and families which in turn can lead to increased costs and unnecessary friction in the doctor-patient relationship. Perhaps more importantly, it has the potential to result in delayed treatment.
Having said this, some provisions should be made to ensure that vulnerable people are made aware of their rights under the legislation, particularly in so far as rights of appeal are concerned. In particular, there appears to be no assurance at the moment, under Bill 19, that a person who is assessed as incapable for consent-to-treatment purposes specifically will be made aware of those rights. Also, it's not clear at the moment that those who cannot afford independent legal representation will be able to obtain it in all circumstances.
What is the answer? There are some suggestions in my paper, and I'll leave you to go through them. They are by no means perfect or complete. It is something that needs to be investigated further. I have seen the proposal of the Advocacy Commission and it is an interesting one, although I haven't yet had an opportunity to review it fully.
Turning to the new definitions that have been included in the act, in particular the amendments to the definition of "treatment" and the introduction of definitions for a "course of treatment" and a "plan of treatment" are very helpful. They clarify the circumstances in which consent must be obtained and the procedures that should be followed and that is welcome.
Having said that, a number of hospitals still feel that there is some concern that it is not entirely clear as to whether a health practitioner who supplies a component of a plan of treatment, such as an X-ray for example, is entitled to assume that informed consent has been obtained in respect to that particular component by the practitioner who proposed the plan of treatment. We think that it would be reasonable for the practitioner who performed the X-ray, for example, to be able to make that assumption that proper consent was obtained, and that issue should be clarified perhaps by means of an amendment to section 27 which deals with liability concerns.
Under section 11 of the act, a health practitioner will be able to assume that consent to a treatment includes consent to a variation in the treatment or to the continuation of a treatment at a different setting if there's no significant change in the nature, expected benefits, material risks and material side-effects as a result.
This is a positive change. Under the existing legislation, health practitioners are often required to go through these consent procedures repeatedly with patients because of minor variations in treatment or because a treatment has to be provided in a different setting. In each case, revisiting the matter of consent achieves no real benefit in terms of the patient, we don't think, and serves only to increase the time and the costs involved in delivering the required medical care.
The inclusion of a definition for "relative" is another positive development given that this is a class of substitute decision-makers that is vague and uncertain at the moment. Health practitioners need to know who they can turn to for consent if the individual in question can't provide it himself or herself.
With regard to emergency treatment, section 23 would permit a health practitioner to administer emergency treatment without consent where communication with the patient cannot take place because of a language barrier or because there's a disability that prevents the communication from taking place. In the case of a language barrier, it can be difficult to obtain appropriate interpreter services in a timely manner. Many of the hospitals that we have dealt with have expressed concern in that regard. Many of them have very busy emergency departments and they are worried that a patient's health could be put at risk unnecessarily because of delays resulting from a language or disability barrier, so this change in the legislation is welcome.
Treatment without the consent of a substitute decision-maker is dealt with in section 25 of the legislation. There are occasions that arise where health practitioners are concerned that a substitute decision-maker is not acting in accordance with the principles set out in the legislation. When this occurs in the context of an emergency situation, the practitioner should be able to treat the patient in accordance with the provisions of the act despite the refusal of the substitute decision-maker of that treatment. Section 35 reflects this principle and again we see it as a positive development.
1010
The amendment to the test for informed consent is also welcome since it helps clarify the obligations of health practitioners who propose treatment. Section 13 and section 18 of the act deal with the withdrawal and withholding of treatment. Section 13 now confirms that a substitute decision-maker can withdraw consent to treatment on behalf of an incapable person in appropriate circumstances and section 18 says that a substitute decision-maker can also refuse treatment on behalf of an incapable person.
Both of these provisions help clarify the powers of substitute decision-makers. In many cases these powers have to be exercised in very difficult circumstances. In those cases, although the decisions and the reasons for the decisions should be discussed, families and health care providers should not be burdened with uncertainty as to what is permitted or not permitted by the legislation.
Witness attestation requirements is the next issue that I'd like to deal with, and I deal with this on almost a daily basis, because I'm often called upon to prepare powers of attorney in my practice. The proposed changes are set out in subsections 10(3) and 48(3) of the SDA; those are the existing witness requirements rather.
Powers of attorney by their nature are often required to be executed at a person's home or at hospitals or at other health care facilities. Since the Substitute Decisions Act was introduced, many hospitals and many financial institutions have adopted policies that prevent their employees from acting as witnesses to a power of attorney. Why have they done this? Because they're worried that their employees and the institutions themselves might be drawn into potential litigation as a result of these witness requirements.
If you look at subsection 10(3), I'll just take a moment to read it to you. It says: "Each witness shall, if the witness has no reason to believe that the grantor is incapable of giving a continuing power of attorney, sign the power of attorney as a witness." The problem words are "if the witness has no reason to believe that the grantor is incapable of giving a continuing power of attorney."
The introduction of that provision significantly altered the law in Ontario with regard to the duties imposed upon a witness who is witnessing a document. Under a power of attorney, that person is no longer simply signing and attesting to the fact that the document was signed by someone else. Instead, subsection 10(3) requires that that person understand that this is a power of attorney that's being signed and it implies that the witness has to make some kind of capacity assessment of the grantor. In order to be able to do so, presumably the witness has to be aware of the mental capacity test that's required to be met by the grantor.
Needless to say, many if not most witnesses have no experience or training that would equip them to make such an assessment, and very few people have any actual knowledge of the mental capacity test prescribed by section 47 of the Substitute Decisions Act. It's probably also safe to assume that most witnesses don't even understand that they're under this kind of an obligation. They're probably still thinking that all they're doing is signing and attesting to the fact that someone else has signed this document. That's clearly not the case.
That leads us to wonder, what about all those powers of attorney that are signed out there by witnesses who haven't complied with this section? They're probably not valid. They don't comply with the act and they're probably not valid technically.
In addition, a number of legal experts have written papers suggesting that where a person acts as a witness to the execution of a power of attorney in circumstances where he or she had any reason whatsoever to believe that the grantor was incapable, that witness could be held liable personally if the power of attorney is subsequently attacked on the ground that the grantor was incapable at the time of execution and there has been any loss to the grantor's estate by reason of the actions or omissions of the attorney.
I should also note that these witnessing requirements are even more onerous and are inconsistent with those that apply to wills, and there doesn't appear to be any persuasive justification for this difference.
Given the liability concerns that I've described, it can be very difficult for a patient who is in hospital to find two individuals who are prepared and able to act as witnesses to a power of attorney. That's particularly the case where they have few or no family members who would qualify as possible witnesses. It's also the case where a patient is suffering from some kind of an illness or disability that leaves him or her lucid and capable most days, but incapable on occasion. Presumably, that person should be able to give a valid power of attorney on a day when he or she is capable. Having said that, anyone who knows about the individual's condition might be very nervous about acting as a witness for that power of attorney and might be well advised not to do so because of personal liability concerns. The reason is that if you know a person is occasionally incapable, how can you say, as required by subsection 10(2), that you have no reason to believe that he or she is incapable?
The unfortunate result of all this can be delays in the execution of an important document, excessive costs. I as a lawyer, for example, am often required to cart an articling student or another lawyer to a patient's home or hospital to have these documents signed. Even more problematic perhaps are all those powers of attorney that may have been executed without complying, perhaps unknowingly, with the requirements of the Substitute Decisions Act and which may not technically be valid.
In view of this, the changes to the witness attestation requirements I think are very well advised.
There is one other issue that I want to raise with you that is not dealt with in my paper. It because a client yet again, yesterday, raised it with me. The Substitute Decisions Act imposes a number of soft duties on attorneys. That's under section 32. For example, you have a duty to try and foster regular personal contact between the incapable person and supportive family members and friends of the incapable person, you have a duty to consult from time to time with supportive family members and friends, and there is a standard of care that attorneys must comply with. These are just a few.
These duties and standards of care are based upon assumptions about family units and relationships that may be entirely inappropriate and often really are. What happens typically is that the client will come to me, and I'll give you one example. A couple will come in and they'll say: "We have five children, two are straight as an arrow. Of the other three, one is a spendthrift, one is an alcoholic and then there's Suzie, who makes trouble wherever she goes. We want to name our two kids who are as straight as an arrow as our attorneys and we want them to be able to have complete control over our affairs and not have to consult." When I tell them that they're going to have to consult periodically with Suzie, the alcoholic and the spendthrift, you can imagine that they will want me to put a provision in the document that permits them to opt out of that. They don't want to impose that obligation upon the two kids they trust.
Under the existing act you can't do that, and I think there should be a provision that permits individuals to opt out and set their own standards, set their own duties. If I'm capable, I should be able to decide who my attorney will be and the standard to which he or she shall be held in terms of acting and the powers he or she has as well as the duties. At the moment, you can't. That's quite different from the law that exists when I'm appointing my own attorney under a will or if I'm establishing a trust and naming it as a trustee; I can certainly do all of those things. Why should it be different when it comes to an attorney?
Mr Chairman, those are my submissions.
Mrs Caplan: Thank you very much for a thoughtful brief. On the last point that you made, in fact the existing legislation does not permit a capable person to formally appoint someone to act on their behalf, but in practice that happens every day. I think most providers will respect the fact that an individual will say, "My daughter knows what I want; listen to her, " and the provider will say to the individual, "Are you sure?" but as long as he's satisfied that those are the wishes of the patient. Do you see a problem with that? Do you really think a statutory requirement that would allow that to be formalized?
Ms Thériault: I'm not sure we're talking about the same thing. Are you talking about the soft duties that I was dealing with?
Mrs Caplan: Yes.
Ms Thériault: Those are duties that are imposed by law, and clients who have the biggest problem with them are the clients who are thinking about their financial affairs.
Mrs Caplan: I'm talking about personal care decisions.
Ms Thériault: Similar duties are imposed in the personal care context, there's no doubt about it, but where I get the biggest complaint certainly is on the financial side.
Mrs Caplan: Could that not be satisfied with a power of attorney given, which is effective immediately now under continuing property?
Ms Thériault: If I give a power of attorney to my two children who are as straight as an arrow, my two children are subject to all those duties whether I want them to be subject to them or not. I don't have any option in that regard under the existing legislation.
Mrs Caplan: But under the existing legislation you also have the opportunity to instruct.
Ms Thériault: Certainly, as I understand it, the public guardian and trustee and a number of legal commentators have on occasion taken the position that they have some doubt as to whether you can opt out of those duties that are statutorily imposed.
1020
Mrs Caplan: Are you referring to Bill 19 or what's in place before Bill 19?
Ms Thériault: I'm referring to the Substitute Decisions Act as it now exists, and I don't believe that Bill 19 addresses this concern.
Mrs Caplan: It's my understanding, and I would like clarification from the ministry, that someone filling out a power of attorney for property can make it as specific as they wish today, so effectively to opt out of those obligations. If that's not the case, then this should be amended to permit that. That is exactly the purpose of a power of attorney for property: to allow someone to give as much or as little authority while they are competent.
I've always told people to be very careful, when they write a power of attorney, not to state that it's only effective when you're incompetent, because then all of the capacity assessments are required. So make sure it's somebody that you trust, because it is effective immediately as long as it's in their hands.
Ms Thériault: When you're preparing a power of attorney, you have certain freedoms in terms of what you can put in the document. You can make it limited to certain property, you can make it applicable to all of your property, you can make it limited in terms of time, but my interpretation of the law, and certainly the interpretation that I've heard from many others who are legal experts in the area, is that you do not have the ability to opt out of those duties that I've just referred you to.
Mrs Caplan: I'd like some clarification from the ministry because I've been telling people they can; and I'm a lawmaker, therefore I think the law should reflect that, which lawmakers believe the law should do. If that's no the interpretation, then this legislation should be amended so that can occur. As far as I'm concerned, that is the entire duty of having a power of attorney, whether it is for personal care or property. Thank you for bringing that to our attention.
The Chair: Do we have somebody here from the ministry who can give us a quick answer? The point is that the presenter has implied that there are certain soft obligations of consulting with families by an attorney of property and whether or not the drawer or drafter of that power of attorney can instruct his attorney not to consult.
Ms Saara Chetner: Certainly Ms Thériault is correct that there have been many different interpretations about that. To my knowledge, there has been no judicial interpretation of the statute as to whether those public interest or balancing kinds of provisions, which are not about the legal authority of the attorney but rather about the attorney's process for decision-making --
The Chair: Excuse me, what is your opinion, or do you have one?
Ms Chetner: The provisions suggest that those are duties and that one cannot opt out of them --
The Chair: You agree with Mrs Thériault, then?
Ms Chetner: -- though the grantor can certainly give guidance to the attorney as to how to carry them out, and many lawyers do counsel their clients to specify if they want consultation to occur in a certain manner or the degree to which consultation should occur, given the vagaries of family relationships.
Mrs Caplan: But what if in their instructions they write in that no consultation is required?
The Chair: I'm sorry, Mrs Caplan, we've got our answer. Mrs Caplan can further inform herself afterwards. We must proceed.
Mrs Caplan: -- consent to the ability to say yes or no? I don't think she did.
The Chair: I thought she did.
Mrs Caplan: If someone writes it in their instructions, is there no requirement under the law for the consultation to take place? Is that valid?
Ms Chetner: The statute requires it.
Mrs Caplan: Would that override the statute?
Ms Chetner: I don't believe that it would.
Mr Marchese: Thank you, Ms Thériault, for your presentation. There are a number of concerns and I want to touch on some of them. You say that it's a positive development that we're repealing the Advocacy Act and that we're eliminating the mandatory rights advice. I don't see that as a positive development. I see that as a step backwards.
For me, it's a question of how we protect the rights of individuals who are vulnerable, be they people with disabilities or seniors who are frail, often, and very vulnerable in many situations. How to put systems in place to protect them is what concerns me, because where it works we don't have a problem; it's where it doesn't work that we have a serious concern. The March of Dimes and the Ontario Federation for Cerebral Palsy were here, talking about so many systemic problems that are found for which, unless we have people with authority to deal with them, those abuses continue to exist.
It's irrelevant that people say, "We care and we like advocacy, who doesn't like advocacy, and yes, those abuses shouldn't exist and we should deal with them," but if we don't have a system in place that advocates on behalf of these people generally and that has people with rights advice to deal with them and advocates to deal with them with right of entry, then some of those abuses continue to exist.
My concern in terms of what you speak about, the Advocacy Act, when you say variations in treatment or in a treatment setting are a positive change, is that a number of people have come in front of this committee who are advocating on behalf of vulnerable people who say that this is not such a positive change, necessarily, because people should be advised of their rights every step of the way.
I know that for the people you defend this is a positive change, but the clients and those who advocate on behalf of clients worry about that. They also worry about emergency treatment, for example, which I think you say is a positive change. But a number of people, including the March of Dimes, say that with respect to language and disability it may be a barrier, but people should have the right to be accommodated, that we should at least make an effort to find an interpreter. So where you find that as a positive change, those who defend the rights of individuals with disabilities and language problems say we should at least make an effort to accommodate that problem. If we haven't, it's a serious situation.
My concern is how we defend those rights at the other end, and you seem to have another concern at another end. Do you have suggestions on how we protect these very people who have vulnerabilities in systems, in service treatment areas and so on?
Ms Thériault: I want to answer by saying from the start that your comment initially, where the system works, is not a problem. It's where the system doesn't work that concerns us; those are the cases that concern us. I think the problem with the legislation is that it's based upon the assumption that it doesn't work most of the time, so what you end up with is a system that's too intrusive, too cumbersome, too expensive and just too much.
In the emergency treatment situation that you gave, where the new legislation proposes that it be administered even though you don't have consent because you can't get it because of a language barrier, for example, you say that those people should be accommodated. I agree that yes, they should be accommodated, yes, we should try to find an interpreter, but at the end of the day, if the person's health is in danger, treatment should be able to be administered to that person. That person's health shouldn't be put at risk.
Mr Marchese: We agree.
Mr Klees: In Mr Marchese's philosophical soliloquy he made the point for the retention of this bureaucratic structure for advocacy, and I'm encouraged that you as a lawyer would come here and tell us that we don't need that kind of adversarial structure to solve many problems that aren't there. I appreciate your perspective that you brought to us.
I want to just address very briefly a point that you made on page 3 of your presentation where you ask the question about the health practitioner who remains unsure whether his component of a plan of treatment is covered. The intention under section 12 was that one health practitioner would be the lead person in approving and would also be responsible for ensuring that consent is obtained. I'm wondering, in light of the fact that you raised this, whether you feel that it is not clear enough as to what the intent is here.
Ms Thériault: That's right. I think the intention is clear, but I think there should be a companion amendment to the section that deals with liability of health care providers -- that's section 27 -- to make it clear that that is in fact the case.
Mr John L. Parker (York East): Ms Thériault, I wouldn't want Mr Marchese to think that the subtlety of his language escaped my attention, so I just wanted to ask you, do you carry on an active practice of defending doctors as a litigant?
Ms Thériault: No, I don't.
Mr Parker: You're a wills and estates lawyer, as I understand it.
Ms Thériault: An estate and trust lawyer, yes.
Mr Parker: Are you here representing any particular client or client group?
Ms Thériault: No, I'm not.
Mr Parker: You are here in what capacity then?
Mr Parker: We've received deputations from a number of professionals who are knowledgeable in the field and we're very encouraged with the response we've received and very encouraged by your support today. Thank you very much.
The Chair: Thank you, Ms Thériault, for sharing your expertise with the committee. We appreciate it.
1030
LINDA DAVIS BONAR
The Chair: Our next submission is from Linda Davis Bonar. Welcome, Ms Davis Bonar. You have one half-hour and you can use that time as you see fit, and that includes any questions you might receive. Please proceed.
Ms Linda Davis Bonar: Thank you very much. I call my presentation "Dead People Can't Talk." I want to thank you for giving me this opportunity to express my opinion on advocacy. I'm here today to speak for all the people who did not have an advocate to help keep them alive. If I were not a strong survivor and self-advocate, I surely would not be alive today. Suicide and/or emotional abuse and neglect, followed by an actual domestic assault, were quite enough to make me want to give up. But I would not expose my children to any more of the cycle of abuse and I promised myself to do everything possible to empower all of us.
Recently, my close friend would have surely died within these past two weeks if I had not been there in the hospital with her almost 24 hours each day. Keeping her alive is costing lots of money, for dialysis three times a week and radiation treatments for lung cancer. A cardiac arrest from the kidney failure and/or suffocation on the blood vomit from the enlarging lung tumour would have been an easy reason to explain her possible death. We questioned everything the doctors and nurses said and did. It was obvious they did not expect her to live. No one knew she was not ready to give up, and I was there to make sure she had the best treatment and explanations. After the radiation treatments, we came home: alive, and very proud of it.
What was the bottom line? Why was I there with her most of the time? I feel it is money, as usual. I feel they wanted her to die.
I call this "Advocates Plus," because the real people who have helped me are few -- very few. They went the extra mile for me. They validated and supported me when all appeared hopeless and impossible. They went way beyond the call of duty and really stuck their own necks out for me. They put me in contact with important players to access this intricate web of self-advocacy, especially in the government and different organizations. These are the advocates who helped me to get the supports that I needed.
In "Self-Advocacy and Proactive Thinking": I now am able to help advocate for vulnerable others. I do the same for them that I was given, to have the willpower to go on for a better life, and in doing so, they get the strength to keep on advocating for themselves. It is a chain reaction in the most positive and motivating way possible. When an empowered person with a disability supports their own fellow man and woman, it is conceivable to that vulnerable one that they can better their life also.
This is the main reason that we all need an independent support such as the Advocacy Commission in place. This guides others how to help and where to go. Finally, we were getting an effective and efficient force, and now our government wants to take this away from us. How can this be abandoned -- like us?
This is "Life from the Other Side of the Fence." It could happen to any one of you, any day, at any moment. Today you are healthy and able-bodied, and tomorrow you could be in the disabled category. I have lived both places. I never imagined what it was really like. When I became disabled, there was no magic advocate who appeared to help me live this roller-coaster life. This myth that there is help for you out there must be dispersed. There is nothing. Bureaucrats appear callous and invalidating. A lot of lip-service gives way to waiting lists, no funding and all kinds of "Sorry, but not today." What we need are what I call advocrats, not bureaucrats.
Standing up for one's self does not mean physically being able to stand. It is speaking up for a person's right to a dignified and respected life. When will anyone have the right to live without fear as we are facing and challenging our new nothing that the government is presenting?
I ask: Open your hearts, open your minds, open your mouths and help. Actions speak the best. Give back our freedom. Advocacy must be top priority to be able to stay alive. Or will only the healthiest and wealthiest people be able to populate this so-called civilized country?
My little addition here is, "How dare I." This is just in personal experiences. How dare I not accept the crumbs handed out to me. How dare I challenge authority figures. How dare I want a happy home and life for my children. How dare I help vulnerable others encourage their lives out of intimidating conditions. How dare I believe I have rights to live as full a quality life as possible. And how dare I leave a relationship for the freedom of a peaceful and safe home of my own.
I have these rights to live my life in as positive a way as possible, as every one of you does. Let us all do what is right.
Thank you for listening.
The Vice-Chair (Mr Ron Johnson): Thank you very much for your presentation. We do have about six minutes per caucus and we'll start with the third party.
Interjection.
The Vice-Chair: Oh, did you? That's what the Chairman had down here, so we'll start with you, if that's okay.
Mrs Boyd: All right. Thank you very much for coming today. It takes a lot of energy and a lot of courage to come and be public about very personal issues and I want to thank you for doing that.
One of the issues that we've been facing is this assumption that people who are in the disabled category, who have been labelled in one way or another, who come before this committee somehow are coming out of a special-interest focus. Somehow every time groups like the groups that spoke this morning or individuals like you come and talk about what the real experience is like, we get a sense that the government members seem to see that as a special-interest presentation. Mr Parker, just with the previous person, for example, said, "What is your interest here?" "Oh, well, I just represent health professionals and hospitals." That's not a special interest, but you're a special interest.
1040
Ms Davis Bonar: Yes.
Mrs Boyd: I guess one of the real issues in talking about the need for advocacy is exactly that, isn't it? Those who have wealth and power in our society, who have privilege and power in our society, are not seen as a special interest, but those who try to advocate for those who don't have that power and privilege are seen as being a special-interest group and therefore not quite as legitimate, somehow working out of a vested interest. Do you want to comment on that? Because you watched that happen this morning. I'd be interested in your opinion.
Ms Davis Bonar: Yes, I did watch that happen, and it does seem like if you have money, you have power. People in power do get better service. It's the VIP or the -- I call that the special-interest group more than myself. I feel that many times the best interests of the person are really not being taken into consideration at all.
The bottom line is usually money, time, energy, and after a person has been in a position for a while as the caregiver or professional, so to speak, there appears to be a type of callousness and a type of almost non-caring, just do it and get it done.
I feel it is just so intimidating and invalidating to the person that it makes you feel like, what's the sense? So in banding together, we are giving each other power. And I feel that there shouldn't really be a definite division between the able-bodied and disable-bodied because of just so recently being in the able-bodied community myself. I really can see it from both sides of the fence so much right now and I'm really appalled that I was suddenly put on the wrong side of the tracks.
Mrs Boyd: My daughter is going through the same thing. She was diagnosed with MS this summer, and she was just saying to me this week that it feels the same way for her, that here she was given a whole lot of credibility in terms of self-advocacy when she was an able-bodied person. As soon as she is not, then the situation becomes much more difficult.
One of the things you raise here is the value of the life of disabled people. We heard some shocking allegations that in fact there is pressure on people who are disabled in fact to agree to do-not-resuscitate orders when they go into the hospital for something totally other than their disability and that sort of thing. May I ask if you have any personal knowledge that that indeed does happen? Your story makes me think that you had a sense that there was a devaluation of your friend who you were advocating on behalf of. I'm curious as to whether you know yourself of instances where this has happened, where in fact either the person or a substitute decision-maker is in fact asked to sign an order like that.
Ms Davis Bonar: I certainly can't say that I can name a case or anything like that. I feel that it is really in my gut feeling that they would've surely let a person in her condition die, just by her appearance etc. That to me is not fair to base a judgement, an assessment of, is this person's quality of life worth it, so should we or shouldn't we do a costly treatment or whatever? That is not really what it's all about. It's about, do we want to be people? Do we want to be human? Do we want to live as a civilized world? And don't make assumptions on appearance, for sure.
Your question if I've seen anything in particular: I feel that an advocacy part, a person speaking there for the patient and with the patient and for their wishes, is extremely important, because the person lying in bed is not really heard. I was one of those people not really heard. One of the strongest reasons I'm here is because I've lived that side where I wasn't really heard, I wasn't listened to. I feel it's very important that this comes across, that nothing should take place without there being some kind of knowledge of what's going on.
Mrs Boyd: If your friend had been ready, if your friend was in fact ready to die and was agreeing to that, you wouldn't have the same feeling, would you?
Ms Davis Bonar: I think there are phases you go through as well when you're told you're ill or when you're told this or that. So I don't fully understand that completely; I don't really know what I'd do.
Mrs Boyd: But if in fact you knew that your condition was terminal and that you were in a palliative stage? Part of our problem, you see, is that we have to see both sides of this, and part of the advocacy issue is seeing both sides. There are people who are in end stage of life who want the right to say: "I want to refuse any further treatment. I want to have withdrawal of treatment." So we have people coming in front of us on both sides, and part of the challenge for us as lawmakers is to make a law that really respects the wishes and the particular circumstances of each individual.
Mr Klees: Thank you very much for your very thoughtful presentation. In your second-to-last line, you say, "Let us all do what is right." I know that every one of us in this room, every member of this committee wants exactly that. We want to do what is right, and we want to do what is right for everyone in the province, particularly the vulnerable, because that's what this legislation deals with. There are, obviously, differences in terms of perhaps how we feel we should get there.
I just want to share with you, and this is not news, that we are facing a very difficult problem in this province. You put your finger on it, and that is money. Unfortunately, there are some restrictions that our financial circumstances place on us in terms of how we can go about solving these problems. So at the outset I just want to assure you that we all have a common objective here, and that is to ensure that the right thing is done. In fact, as a member of the Legislature, when the Legislature sits, in our daily prayers the Speaker reads a prayer and one of the lines in that prayer is, "Help us to use power wisely and well." I think that guides all of us, and that's certainly our hope.
You made another comment in your submission, and that is that bureaucrats many times appear callous and invalidating. That also has been my experience. In the very short time that I've been in this position, many times I've had complaints from people who feel that the bureaucracy just isn't responding, that the animal of government, if I can put it that way, just is very callous to their needs. I think that too is one of the things that we're trying to achieve, that we don't create another level of government by trying to help people, that we try to keep this as human as possible and try to keep that human touch to the issue of advocacy. You're doing that very well yourself in terms of your personal initiative by being here and obviously the work that you're doing in the community.
We recognize that we can't just allow that to happen, that government has a role to play, whether that's in education or coordinating, and we know that some resources have to be put to that. I just want to assure you that we are willing to do that, but we want to do it in the most effective way possible.
We have been accused in the past of not consulting, but that's why we're here now. The reason that we're here and the reason for these public hearings is to get input from people like yourself as to what the best model is. Within the limited resources we have, what is the best model that we can put forward to help people?
1050
I want to thank you for coming forward, for bringing some of these issues to our attention. Also, to yourself and those you represent, we want the message to be very clear that we are there to help, that we don't expect it to just evolve, that there is a role for us to play. But that's what we're here to find out, and had we come forward again saying, "We're taking this away and here's what we're replacing it with," I don't believe that would have been doing credit to the process. The reason that we don't have anything right now in a package to say, "This is what it's going to be," is because we wanted to hear from you and we wanted to hear from other people over the last month in terms of what that system should look like, how it can best be provided in the province of Ontario.
Thank you and I trust that you'll be available to us over the next number of weeks as well to perhaps get some further input.
Ms Davis Bonar: Do you have a question for me?
Mr Klees: I wanted to first of all make that statement, because I think to a large degree what we're trying to do here has been in some cases misrepresented and in many cases perhaps misunderstood. It's important that that is set straight for the record.I give you an opportunity, if there is any more time, to make any further comments.
Ms Davis Bonar: I appreciate what you're saying and I appreciate your comments to me. I still feel I'm getting lip-service because nobody knows what it's really like to be on the other side. The only interest that I have in coming forward is so that everybody can see that we're all the same and that in making decisions you are going to be making -- and I hope that they are going to be positive ones that are going to be helping vulnerable people -- I hope these things aren't taken away from us, what we've gained. My question to you is, will we be getting feedback? Will we be getting answers? Will we be questioned again before you do final acts and bills again?
Mr Klees: The reason that I wanted to just connect with you on this, to ask if you would be available, is that we would like to be in touch with you. Certainly we're holding meetings now with stakeholder groups, and there will be responses to the input that we've had here and ongoing consultations, so we want this to be a very meaningful process. I fully understand your concern about lip-service, because there's a great deal of cynicism about the political process and about government. We have reason to be cynical, because governments have disappointed us, governments of all stripes over the past. I guess what we have to do now is say, "Look, we've had enough of that and it's time to be positive and it's time to make a difference."
Mrs Caplan: During the past election, when your Conservative candidate knocked on your door, did he or she discuss this issue with you?
Ms Davis Bonar: I cannot say that anyone did in particular, no.
Mrs Caplan: Because what is becoming clear is that that's what this government believes was consultation prior to the tabling of Bill 19. I've been asking all of the major organizations and groups that have traditionally been involved in consultation prior to the tabling of legislation, and what's clear is that there were very inadequate discussions with those groups which would expect to be involved with a consultation with the ministers. Frankly, I take no comfort either when I hear that they talked to 20,000 people, or knocked on 20,000 doors, because in my own experience in my own riding I can't think of more than one person who raised this issue in the hierarchy of concerns when I knocked on their door.
The reason I'm making that point is that I think that this is about values, and the values that society places on these issues frequently don't pierce the consciousness until you're in the position which many of us have difficulty imagining or contemplating, although I did have a personal experience 11 years ago. My father had been diagnosed with terminal bone cancer and began his chemotherapy treatment. He had a massive coronary with extensive brain damage. They had no idea how long in fact he'd been unconscious before they found him and in fact he was resuscitated. The reaction of the family was, "Why did you do that?" In fact, there had been no communication or discussion about wishes upon admission. I think we've made some progress in the 11 years, but it certainly isn't consistent across this province, in seeking wishes. What I hope this legislation will do is be amended to encourage those communications to take place, because they are not consistent.
One of the concerns I have and I'd ask you to comment on is that there is no obligation in this legislation for a provider of service to inform a patient or client that they believe they do not understand and appreciate the consequences of the proposed treatment and are therefore calling in a substitute decision-maker; there's no obligation on the part of the substitute decision-maker to inform the individual; there's no obligation to inform the individual that they can object or that they can make an application to the Consent and Capacity Board. So they don't even know or have a right to be told under this legislation. Then, to compound everything, the provider and the substitute decision-maker have total freedom from liability through the courts.
Mrs Johns said to a proposal I made earlier that said, "Maybe you should only give the freedom from liability if they are satisfied that the person is aware of their rights," that might lead to excessive court challenges. That question sort of alarms me, because it would suggest in fact that this government, notwithstanding the very fine words from Mr Klees, just doesn't get it. So I wonder if you would like to comment on the proposal that if you're not going to have an enforcement model up front to require people to be told of their rights, do you think it's reasonable to say you don't get the liability protection unless you are satisfied yourself that people are aware of their rights?
Ms Davis Bonar: My personal opinion is that I feel that a person should be liable if they make a decision like that. Yes, I really feel they should be liable, because they should not make a decision at all if they really don't know what the person wants. That's basically what I've got to say. I realize I'm probably out of time.
Mr Klees: Mr Chairman, could I clarify something? I don't want to take anyone's time.
The Vice-Chair: Very, very quickly.
Mr Klees: I think Mrs Caplan made reference to a comment that Mrs Johns made and I don't think that's what Mrs Johns said. I think Mrs Johns made the point that your suggestion that we should leave it open to litigation, liability --
Mrs Caplan: Would clog up the courts.
Mr Klees: Exactly, that that may be too litigious an issue. I wanted to clarify that. That's not the same as the message that came out.
Mrs Caplan: Check the Hansard.
The Vice-Chair: Thank you, Mr Klees. On behalf of the committee, I want to thank both of you for your presentation today.
CANADIAN MENTAL HEALTH ASSOCIATION, METROPOLITAN TORONTO BRANCH
The Vice-Chair: The next presenter will be Steve Lurie from the Canadian Mental Health Association, Metropolitan Toronto branch. Good morning, Mr Lurie.
Mr Steve Lurie: I want to thank the committee for agreeing to hear me. I want to say at the outset that our branch supports the submission of the Canadian Mental Health Association, Ontario division, so I won't be going over ground that they covered in their presentation to you. What I would like to do is spend some time looking at how the discussions about advocacy have taken place over the last 17 years. I've been privileged to be involved in the mental health field beginning in 1975, so I've been able to see a number of provincial governments attempt to grapple with this issue. I'd like to talk a little bit about the patterns I've observed in the debate, take you through some landmark pieces of the debate and then finish with some recommendations about how we could go about building an advocacy system.
1100
Just to finalize a few remarks about my own background, I've been with the Canadian Mental Health Association since 1975. In the early 1980s, I was able to work with Health Minister Grossman around the establishment of the provincial psychiatric patient advocate program. In 1987, I had the supreme honour of being able to be part of Father Sean O'Sullivan's review of advocacy, and also worked with Minister Caplan on the Graham report. In 1991 and 1992, I was appointed on a secondment basis as the coordinator of mental health and addictions for the Ministry of Health, and since 1993 I've been a member of the provincial advisory committee on mental health reform. I guess if I'm not a survivor of the advocacy debates, I'm probably a veteran.
I would start off by saying that so much of the debate has been framed in terms of absolutes. No matter what side of the issue you're on, people have a sense of their truth is the truth and there's only one way to do this. I hope that as we try and develop an advocacy system for Ontario, we recognize that as Father O'Sullivan said in 1987, and it's hard to believe that it's almost 10 years since he wrote his report, we really do need to foster a mixed system of advocacy in this province.
Let me begin by talking about the Alviani inquest, because that's when I first became aware of the need for advocacy. Alviani was a psychiatric patient -- today he'd be called a consumer survivor -- who was medicated on haloperidol and valium and died in the Queen Street Mental Health Centre. There was no formal advocacy system in those days, but something emerged from the community, an organization known as the Coalition on Psychiatric Services, which was made up of CMHA, ARCH, some consumer advocates and the Patients' Rights Organization.
Despite some real differences in our groups about how we would run the mental health system if we were allowed to run it, we were able to find common ground around the need for advocacy and the need, in particular, for systemic advocacy. One of the things we found was that despite the legislation which talked about detaining and restraining under the Mental Health Act, there was no clear agreement, and there were a multiplicity of hospital bylaws and government policies that covered the administration of restraint when somebody was involuntarily hospitalized.
This suggested there was a need to have an overview, because what goes on in the general hospitals is different from what goes on in the psychiatric hospitals and every general hospital is different. As well, we did a survey of people at the Queen Street Mental Health Centre at the time and found there were numerous instances of a lack of informed consent to the administration of treatment.
This small group didn't have any money from anybody, so we just kept meeting on our own and we wrote lots of letters to the government of the day, and we had some meetings with Dr Boyd Suttie, who was the ADM for mental health at the time. I'd like to believe that some of the pressures this group were able to bring to bear got Minister Grossman thinking about the need for a psychiatric patient advocate program. Certainly, within a few years that was announced, as well as the strengthening of the community advisory boards in the provincial psychiatric hospitals, which again suggests there's no one way to do this but at least we began to evolve towards an advocacy system.
The year 1983 saw the establishment of the Psychiatric Patient Advocate Office. At the time there was extreme controversy over what model this office should take, whether it should be wholly independent of government, or in a sense owned by the government. There was a real concern by some that having it as part of the Ministry of Health would compromise its ability, that it would be unable to do the right thing, that the ministry would stop it from being effective. If you review the history -- I know the PPAO has made a presentation here -- you'll see that was not the case. In the first year, there were 12,000 complaints and 30 instances of problems. I remember being on the Ontario Association of Professional Social Workers at the time talking to my provincial colleagues who had some real concerns about some of the institutional resistance to that program, but none the less we've got a success that's now almost 15 years old and it would be a shame to lose that success.
Once again, as we moved advocacy into one set of institutions, we found that despite the polarization of the debate, as long as you put something in place it would work. That wasn't to say it was haphazard. There was a lot of planning that went into it and I would suggest that the current government, if they wish to review the experience, Dr Manson did a review in the 1980s of the patient advocate program, Mary Beth Valentine is still around, Ty Turner is still around. So some of the people who were involved with the establishment of that program and remember its early years I think can provide some very good guidance as to how that can continue and how its mandate should be expanded.
In 1987 the O'Sullivan review -- I want to use part of my time to read some of what Father O'Sullivan had to say into the record because I think we too often forget the advice he gave us. In particular, I remember having a discussion with Father O'Sullivan early on in the process because one of the belief systems that the government of the day had when that committee was set up was that the professionals and the government and the consumers could never agree, so they actually put us in three separate groups and asked Father O'Sullivan to play Solomon.
I said to Father O'Sullivan: "Look, why don't we try and bring the three groups together. Let's see if there is any common ground." He agreed to do this. We didn't go on an expensive retreat. We went to a crowded room at OISE. It was a real opportunity to see Sean in action and it was one of the most awe-inspiring events of my career. I will never forget it. He stood up at the front of the room and he said: "Now we're all here. We all have different viewpoints, but if we had to create the ideal advocacy system, what would it be, everything from how would you get the information out about it to what would it do?"
He literally allowed people, with very little discussion on his part -- he simply asked probing questions -- to spend about two and a half hours designing an advocacy system, and the walls of OISE were papered with flip charts. Then when this report came out some months later, I realized that what he done was he had found common ground. I would like to take some opportunity to remind you of what he said in 1987:
"Ontario needs advocacy. More particularly, we, as Ontarians, need to be advocates. Most of us already are, but we can do more. If we are to improve our society, we must. Primary responsibility for advocacy must remain with us as individual citizens, but primary responsibility for advocacy education and the development and support of advocacy services is the proper role of government."
1110
Then he goes on to define advocacy: "Social advocacy entails speaking or pleading on behalf of others with vigour, vehemence and commitment, and we've seen a lot of vehemence and we've also seen a lot of commitment and vigour but those are not things we should be afraid of. Using non-legalistic resources, a social advocate, unlike a legal advocate, does not directly invoke or participate in the legal process to obtain the desired result.
"Social advocacy includes the following four basic principles: Advocacy must be client-directed or instruction-based. Advocacy must be administratively and fiscally independent of the human service delivery system. It must be accessible and it's not necessarily adversarial.
"Major findings" -- you'll see that I've included these as an appendix to my submission -- "The evidence presented to the review identified a clear need for a coordinated and effective advocacy system in Ontario.
"Statistics indicate that there are potentially one million or more vulnerable adults...living in Ontario at the present time who could have need of advocacy." If we look at the impact of the aging population in the time since, there are probably more people now.
Most importantly, "Ontario has a mixture of fragmented advocacy services which are only available to a limited number of vulnerable adults....
"The present system lacks a clear mandate to provide advocacy services as there are no uniform standards of service or training programs for advocates" and advocates "are hampered by the lack of a clear right of access to care facilities, clients and clients' records.
"The gaps in the present system produce inequities and discrimination....
"Other shortcomings...include: underfunding; lack of resources; excessive workloads; lack of direction and support; lack of supervision; and limited accountability.
"There are alarming numbers of vulnerable adults who have been abandoned by family and friends in long-term-care facilities and in the community."
The advocacy review was provided with about three binders, each of which totalled about 200 pages of submissions from people across the province at the time, and the range of problems identified and the range of issues identified was really quite astounding.
It was everything from people who had trouble with their family doctor, to people who had trouble with hospitals, to people who had trouble in the rest homes, to people who had trouble with community services.
But when Father O'Sullivan said there was a real need, he was just reflecting what he heard from the community. This was not invented. It was not a notion of "We better do something to look correct here." There were heartfelt submissions, some of them on scraps of paper that came in to the commission. I would suggest that the committee refer to the archives, because there's some profound evidence that not much has changed.
What O'Sullivan did was he reviewed five advocacy models and came up with a mixed model of advocacy, and I won't go into detail except to say that there are a number of ways one could provide advocacy, but they all have shortcomings. You can go with an ombudsman program, you can go with a volunteer-based program, but what O'Sullivan came up with is he said we need a shared advocacy model, which means that we have to share the "responsibility for the delivery of advocacy services among government, volunteers and community groups," and that -- I think this is prophetic -- "it is an evolutionary/slow growth model which draws upon the successful experience" -- I guess times may have changed his wording now on the Ontario legal aid plan -- "by encouraging community groups to develop advocacy service programs to meet the particular needs of their community and to apply for funding these programs."
The bias here was essentially to have a community-based advocacy system, and we have to figure out how to do that and we have to put one in place.
He goes on to say that it should report to the Legislature through a standing committee or to the Attorney General.
Just to review what he was saying in terms of the themes, the O'Sullivan review was linked to legislative changes regarding substitute decisions. There was a debate over service provider conflict of interest and there was debate over the differences between advocacy and case management coordination. These debates will still continue. But many submissions detailed the suffering and the need for a mixed system of advocacy was identified.
Moving on to the 1991 report on community mental health legislation, we saw there for the first time in the mental health field an exceptionally strong consumer voice which articulated the needs to enshrine rights in legislation, and when the previous administration, government, announced the three acts you're now amending, some of these issues were taken off the legislative table of the Ministry of Health because rights were articulated, and there was going to be some way to enforce rights.
One of the things this report talked about is it also identified the need for dispute resolution mechanisms and provisions for ministerial action in cases of abuse. I've attached some excerpts from that report in the appendix of my submission.
I draw your attention to recommendation 3, "The legislation should include a statement of rights...the right to be accorded dignity and respect...least restrictive environment...right to receive services in one's own community" etc
The subcommittee recommends the government implement an advocacy scheme with haste and emphasize self-advocacy, development of advocacy skills by consumers. The legislation should require service providers operate services in accordance with principles enshrined in the legislation, that there be a complaint and appeal process and, finally, that the ministry have the ability to move into all instances where abuse or neglect is suspected, and if necessary, inspect, and following that being able to take over the operations. They go on to recommend the development of local dispute resolution networks.
If we look at the past period that began from 1992 to the present with the Advocacy Commission, again we see a linkage to legislative changes regarding consent and substitute decision. Again, a strong consumer voice; this time, cross-disability.
But limitations on service provider and family involvement were debated, and I don't think effectively resolved, and the conflict over the Psychiatric Patient Advocacy Office transfer. Then on the positive side, some tools for developing volunteer advocacy and a study that identified gaps in service, but the commission has ended before the services were developed and evaluated.
Now we have the current bill, which is again linked to current changes regarding consent and substitute decisions. Some provisions appear to remove consumer rights and restore family and health practitioner rights, and there is no legislated advocacy contemplated.
I want to summarize now by setting out some observations and recommendations, and you'll find those on page 2 of my submission. I know you've received a lot of detailed submissions. I thought if I could do it in two pages, maybe the committee would be able to remember what I had to say.
(1) There continues to be a need for a mixed system of advocacy, and I think I've identified that in my presentation to you.
(2) Internal advocacy should be fostered through encouraging the development of internal mechanisms in all health and social services.
I've appended for you a complaints procedure developed by my own organization where we consulted with consumers, and the board of directors took on its responsibility to make sure that if people feel we act inappropriately they have an ability to contest that action. Again, you want a non-bureaucratic approach that starts with the person and the person who they complain about, trying to bring them together, and then if all else fails, bring in additional supports all the way up the line.
But sometimes even in an organization where there's an enlightened approach to consumer involvement and dispute resolution, for a variety of reasons, people will need to be able to go outside. So just having an ability and a given hospital program or a community program and saying we can stop there isn't good enough. There needs to be an ability, at a systems level, to intervene and try and rectify disputes.
That also means there may be legislation necessary mandating the reporting of abuse and the protection of those who report it.
(3) Also at the local level, as I mentioned, there needs to be a dispute resolution mechanism. These can keep you out of court and save money, but families, for example, often simply need to talk to a department of psychiatry about why their relative didn't get in. We don't have the capacity to allow for easy access when somebody has a complaint about how the system is performing.
(4) There needs to be a capacity to investigate and address systemic issues at the provincial level, because we do have to look at both the provincial view and the local view, and allowing simply for individual organizations or a local dispute resolution at the community level doesn't allow for the province to say: "What are the themes here? Are there some bigger issues than the local community or the local agency can resolve?"
If you look at how the Ombudsman program has functioned, and that's a possibility to look at in terms of a model, at least they're able to draw to the attention of an operating or funding ministry problems in policy and problems in practice. They can't enforce that the ministry act but they have that responsibility of saying, "This has gone wrong," and they talk to the deputy minister or they issue a report saying, "You've got to rectify these things." I think the government has to have a capacity for somebody to say, "If you're funding the system, you're responsible for it." It's a shared responsibility with those of us who work in it.
1120
(5) An advocacy system costs less than the failure to provide it. I have looked at the most recent estimates on what we spend on health care. We spend about $17 billion a year in this province, and if you add to it the spending on personal social services in Community and Social Services, you get about an $18-billion expenditure.
I guess the question would be, if you spent $1 on services, how can we not afford to spend one cent of that dollar on advocacy? While there was an announcement to cut the commission funding from $18 million, all it represented was 1% of the total that we spend on human services. Now, I'm not sure that's the best figure, but it seems to me, as Father O'Sullivan said to us, we have to acknowledge the need to protect our vulnerable citizens and protect their rights.
Unfortunately, not having a mixed system of advocacy and an organized system of advocacy, it may have us spending more in the long run. If cases go to courts or if we have to have commissions or inquests, these are costly public endeavours.
(6) Rights advice must be available under the Mental Health Act, consent and substitute decisions legislation. I found that the current legislation suggests that it may be available; the minister may provide it. It seems to me that's a must.
(7) The functions now provided by the provincial Psychiatric Patient Advocacy Office need to be maintained and expanded to cover general, specialty hospitals and community programs. I would raise with the committee that there is now discussion in this province about the potential of divesting provincial psychiatric hospitals. If that were to occur, we still would need to find a way to protect the patient advocacy program or those functions.
That brings me to the end of my presentation. I hope all parties on this committee can unite in the need for advocacy services and to get a better organized system than we now have. I'd be happy to answer any questions you may have.
Mr Ron Johnson: I'll be brief. Actually I don't have a question, but there are a few comments that I do want to make.
I want to thank you for your presentation. It's clear that a great deal of thought went into it, in respect especially to your recommendations and I can tell you that we are going to look very closely at them.
At the outset, of course, I want to say that we take advocacy very seriously. We just differ with the approach of the previous government. You've indicated through a number of things you've said -- you talked about the O'Sullivan report and how it talked about that it had to be the grass-roots education and support the government's role. You talked about it being community-based, a non-bureaucratic approach. You talk about making sure there's some sort of system in place for rectifying disputes, that kind of thing, and that's the kind of information we really want to get from you.
Particularly, you've said that O'Sullivan also stated that the heart and soul of advocacy services will depend upon caring volunteers. I want you to understand that's what we really want to foster. That's what we want to develop, community-based advocacy service based on the good work of volunteers and organizations that are already in place, doing advocacy. We see ourselves in an education training possibility and coordinating that kind of advocacy system.
I want to thank you for your presentation. It was very insightful and your recommendations are very good.
Mr John Hastings (Etobicoke-Rexdale): Sir, what would be your reaction to an accreditation sort of process in terms of advocacy that the cerebral palsy coordinator spoke about earlier this morning and tie that to financial incentives?
Mr Lurie: I think that's an interesting model that needs to be looked at. The issue is, how do you guarantee quality and how do you guarantee similarity of service regardless of who provides it? I think there are a variety of models. Accreditation is one of them that bears consideration.
It seems to me that it would be an interesting initiative to bring together the various groups who are now involved in client-based advocacy and see if they could develop a set of standards. Then the issue again is whether the profession or the group polices itself or whether somebody else has to do it, and again there will be debates on all sides of the issue. I think what O'Sullivan identified, and I don't think the situation's changed, there is a need for some standardization.
Mrs Caplan: I would suggest that when you use the term "standardization," that is why there's a need for coordination so that you have that standardization. A lot of people don't understand the language that we use, Steve.
The question that I have for you is: Prior to the tabling of Bill 19, was the Canadian Mental Health Association, or you, given all of your past experience, consulted by the Minister of Health or the Attorney General for advice before they tabled Bill 19?
Mr Lurie: I understand that our provincial office, because they already had a seat on the service provider and family committee of the commission, were invited to a meeting to discuss possible changes, but I wasn't contacted.
Mrs Caplan: It's my understanding in the recommendations that you've made, where you talk about rights advice, that rights advice will be continued under the Mental Health Act, although this legislation doesn't mention the Psychiatric Patient Advocate Office and the intention to maintain that for mental health facilities, but I hope they will take your recommendation that the PPAO -- which I think should be enshrined in legislation now. I think it has proven itself and I think its mandate should be expanded to include the specialty hospitals, community hospitals, as well as community programs.
I'm also proposing that under the Mental Health Act, when they talk about the "psych facility," that it would facilitate that if that was changed to "psych program." That might cause the need for some other amendments under the Mental Health Act, but do you think if we're going to talk about the shift to community, we should change this notion that psych services are provided in a facility?
Mr Lurie: Yes, especially with the shift to even psychiatric hospitals and general hospitals providing services in the community.
But it also raises the whole question of governance of the mental health system, and it seems to me that while we might do some things to facilitate advocacy, and certainly one support would be ensuring, as Manson recommended, I guess, in 1987, that the mandate of the PPAO at a minimum is expanded to cover the whole range of mental health programs.
I think at the same time we also want to encourage individual programs and institutions to develop their own dispute resolution mechanisms as well, yes.
Mrs Caplan: Those two objectives are not inconsistent.
Mr Lurie: Right.
Mrs Boyd: Thank you very much for your presentation. It's really very good for us to be reminded of some of the history and in fact, as I think you will agree, the development of a mixed or shared advocacy system was exactly what was intended by the Advocacy Commission creation because one of their tasks, as you point out, was that they were to give those tools for developing voluntary activity and in fact fostering that education around both the rights and the responsibilities of everyone involved in the community, and they weren't given that opportunity to show what they could do.
When people say the Advocacy Commission failed, they never got the opportunity to do that. All they got to do for a very limited period of time has been to provide the rights advice. Is that not the case?
Mr Lurie: Yes. There are two papers that they've now put out. One is the study of gaps and the other one is a model for volunteer development, which I think we should proceed with.
I think it is unfortunate to close something down before it has an opportunity to demonstrate its worth. Despite some of the problems that occurred with the commission, the fact that they did have a service provider and family committee, that they were starting to engage the field and I think the missing piece would have been to build in an evaluative mechanism.
I think three years from now, if they'd have been allowed to continue, we would have been likely saying, "Here are ways that we can improve this service and here are things that we better change," because there undoubtedly would have been problems and I guess I'm disappointed that we may have to start at the beginning all over again.
Mrs Boyd: The proposal that the commission has made around how to carry on with this coordinating educational effort, have you read it and are you in favour of it?
Mr Lurie: It's a good idea. I think at the same time there has been a bit of a polarization at the commission level around the notion that the disabled community itself, while I agree they are majority stakeholders -- but the assumption that just because you work for a service provider, you have no understanding of issues, and if anything, I take that as a responsibility to make sure that my organization provides decent service to people. I want to know when there are problems and I want to be able to ensure that they get corrected.
I think as this thing evolves -- and that's where I tried to compare the notion of the standalone disability consumer rights and advocacy of O'Sullivan, contrasting it with the 1991 report on community mental health legislation, which said it's not either/or, it's both. So I would hope that as we evolve, we have a system that encourages service providers to make sure that their services are accessible and that they're accountable and that at the same time there are abilities for people who can't use or who feel afraid of using a service provider mechanism, that they've got another option.
The Chair: Thank you, sir, for your practical experience and sharing that with the committee.
1130
PERSONS UNITED FOR SELF-HELP IN SOUTH CENTRAL ONTARIO
The Chair: The next submission is Persons United for Self-Help in South Central Ontario; Bill Gallagher, chair. Good morning, sir. Does south central Ontario include my riding of Cambridge?
Mr Bill Gallagher: It sure does.
The decisions made to repeal, amend and revise the Advocacy Act, the Consent to Treatment Act and the Substitute Decisions Act are extremely damaging to the disabled community in the province of Ontario. The fact this government has chosen to totally isolate and intimidate the disabled community from being equal citizens with equal rights and access to services is immoral, unethical and illegal.
The Decade of the Disabled -- and here we go again -- the Father O'Sullivan report and the Kendall inquiry report have all been thrown aside. The recommendations of former Conservative, Liberal and New Democratic governments have been abandoned, all without consultation with those who are going to suffer the most, and it poses a big question: Why?
Statistics Canada tells us by the year 2000 we will have 20% of our population who will suffer some kind of disability; currently we're at approximately 18%. With Ontario's population standing at 11,162,500, that means over two million Ontarians have some form of disability and approximately 300,000 of us suffer seriously from a physical and/or mental disability.
This misguidance in the passage of Bill 19 will confirm us as non-status persons, residents, leaving us without proper representation and protection of our rights. You are leaving us totally exposed to the whims of others -- you've heard that in the two previous discussions that I've heard -- without the right to be heard. That is a violation of each and every section of human rights in this country.
Self-determination and independence are fundamental rights of us all, yet many of us need assistance in expressing our concerns. You are taking that away from us entirely in one sentence, "The Advocacy Act...is repealed." This 30 pages goes along with 15 to 20, and in some cases 30, years of hard work, frustration and being fragmented, as is listed in the O'Sullivan report and the document my predecessor just listed. You have disposed of us in just one sentence.
Where is the respect? How little have we become? The last time this manner of legislation was recorded was in Germany, for which many Canadians gave their lives to protect us from suppression. The limitations of communism have been restricted severely in the last five years, yet you wish to take every person with a disability back to a suppressionist state.
Advocacy is needed for both the individual and for the systems which govern us. Are we to go back to being subjected to physical abuse, unclean and unsanitary premises, dealing with cockroach infestations, being told this squalid way is the only way your government says we can live? Are we to be subjected to being restrained in our beds and/or our wheelchairs without having the freedom to hear the birds or experience fresh air? Does the fact we suffer from multiple sclerosis, muscular dystrophy, arthritis or any other disability mean we have lost the ability to be productive human beings? I think not.
Advocacy must be practised in all its forms, not be directed by those who abuse and intimidate us, which restricts our opportunities to be productive members of society. Individuals must have the right to be seen and heard when they wish to. Each and every circumstance that follows below as a systemic problem results in many thousands of individual needs for advocacy. I'm going to repeat that because this is important: Every circumstance listed below as a systemic problem results in many thousands of individual needs for advocacy.
Systemic advocacy is needed to correct the inequities within the legislation and regulations currently in use. Many of the individual needs for advocacy would be eliminated, creating considerably less cost. Many of these corrections, if implemented, would avoid duplications in the overall picture -- and they are many. The barriers and obstructions placed in front of all disabled persons are far too massive, degrading and abusive. If you were to ask any disabled person living within the limits of the Canada pension plan, family benefits and general welfare programs what they fear most, it is the abuse taken daily -- I repeat, daily -- in the threatening of loss of services if they stand up and complain and/or demand their rights. Why should this be acceptable at any level?
Why waste constant reviews of people who have a permanent disability, requiring constant visits to physicians? That alone costs the province overuse of the OHIP funding and excessive demands on the transportation system, just to justify the need for more staff. The fear and loss of self-esteem, dignity and personal pride are heavy tolls for this attitude. Is it really necessary for us to grovel and cower to the workers? And understand please, that is a true circumstance. We have to beg for our rights to access programs that are legally ours. How many of you would subject yourselves and your families to this demeaning, beguiling attitude?
Why do we have medical review boards with members, who don't have to be physicians and are not required to have specialist experience, allowed to overrule decisions that the specialists have already discovered and reported upon? OHIP has already covered the cost of making the decision that a disability has been proven. Why then have civil servants review same and deny pensions, then pass the decision along to a further unqualified review panel at the cost of over $70 an hour for each panellist?
Inequities of service vary from region to region, worker to worker and, far too often, from case to case with the same worker. What some are being covered for legally is being denied others. Why is that considered legal, ethical and/or moral? Are not all of us supposed to be equal?
1140
Income barriers are also very significant. Discrimination by the province to those who are covered by CPP or private pensions in our housing costs is rampant. We are told by family benefits we must apply for CPP if we have worked long enough to merit it. When we receive it, and if it exceeds FBA's monthly allowance, a higher rate of rent is charged to those on housing subsidy. My own personal experience is a good example. My income from family benefits totalled $688 monthly and I was charged $92 rent. When I received my CPP, my rental increase was more than the funding increase that I received from CPP. Today, I receive $793 CPP -- there might be a minor fluctuation of about $10 in there with a cheque that I received since this was printed -- and FBA and am now being charged $235 rent for the same apartment. The province has received the benefit of my CPP payments, yet penalizes me 255% more in rent, a $143 rent increase with an income increase of only $105. Refugees and workers' compensation clients with higher incomes are charged less than $100 for the same accommodation in my same apartment. I have requested review and am told that's the way it is.
This is not an isolated case. We have seen incomes be reduced by as little as one cent, one-cent-cheque deductions because someone has earned interest in that amount. The cost of making the changes, plus the recording of it all, far exceeds the benefits. Errors made in payments calculated by the FBA and GWA staff are repeatedly taken off our meagre incomes. There is no detailed explanation given. When you do question a decision, you get a very short, terse answer, along with a notice that to follow this further, you'll have to apply to the Social Assistance Review Board. I must tell you, this is absolutely automatic. You question them once and this is what happens. No way are you allowed further to question staff. A barrier in the form of a rock-solid wall greets any opportunity to try to correct inequities. Mistakes made by staff should not be taken out of the hides of the disabled. Staff should become more responsible. Whenever someone complains about this, you always find a deeper review of your file. They try to find more mistakes they have made and, once again, arbitrarily reduce your income.
With the increased workload staff complains about, we often wonder how they get enough time to destroy someone's esteem and dignity until you're beholden to them. This must stop. We need to be separated from the social services umbrella. I'm going to repeat that: We need to be separated from the social services umbrella. Individual and systemic advocacy are sorely needed here. Why are we denied same?
Barriers in education are getting worse every day. FBA will only pay for education if you can go to school at least half-days. Some people have even been subjected to being forced to sign a performance contract. How can any person with a disability guarantee they will be available every day? University tuitions have gone up sharply. How is a person on a disability pension going to afford schooling when you put it so far past our ability to pay? When someone applies for OSAP funding to help themselves, we are subjected to a review of funding under GWA and risk losing our funding. We are discriminated against before we can even get out of the starting gate. The loss of funding by the school boards results in less assistance for those with a disability, and their future is now a foregone conclusion: They will be dependent upon the system because they are denied basic education and will be unable to work meaningfully. With systemic advocacy proper programs could be initiated, reducing the need for dependency on the system. The system discriminates at nearly every point. Systemic advocacy is sorely needed here.
You wish to revert control of our lives back to the professionals -- my predecessor just went through this -- yet you do not require them to have accessible offices so we may get treatment. I suggest that less than 10% of the doctors in Ontario have accessible offices. It requires us to see a physician at the hospital. Would you risk leaving a wheelchair outside for someone to steal? The wheelchair of the lady who was here two presenters ago was worth roughly $8,500; my powered chair is worth $10,000.
Again, OHIP and the hospital costs go up. Why? You want to give control of our lives to the medical profession in advocacy and consent to treatment. Equal access to medical service is very difficult and is becoming increasingly so. This is often followed up by giving up in despair. What a way to live. Medical reports mentioned above are now subject to a fee, a minimum of $50. To keep our funding, we are told to get a new medical report every year, but you won't fund the cost.
How are people on a disability pension going to afford this? Chances are that the food budget or clothing necessities are not met. Proper diets are ignored because there is no funding for same. Diabetics are frequently discriminated against. Workers deny many funding for needles, lancets and test strips, and as a diabetic I can tell you that can run up as high as $250 a month.
You are shutting down hospital beds, and in some cases wish to close entire hospitals. No thought has been given to the idea that these same empty rooms and buildings could help reduce the housing problem facing the poor, seniors and the disabled. The buildings already exist, and many buildings are partially in use, so the cost would not be excessive. Coordinating between ministries is non-existent. Systemic advocacy is needed.
The Ontario Building Code blatantly discriminates against the disabled. The code requires that apartment buildings with suites for the disabled must have an entrance door of 36 inches, then allow the foyer door immediately behind it to be 32 inches wide. One of the two buildings in my complex is exactly like that. I'm denied access to that building. I require the 36-inch door. How do you get in to visit anyone else? The same code says that the doors to the bathroom and bedroom in our own suites do not need to be of equal size. My own apartment is four years old, a co-op, yet I cannot use my wheelchair, either my manual, which is smaller, or my powered chair, to access my bedroom or bathroom, because the doors are four inches less in width.
In moving to my building, myself and two other persons with a disability found that in providing all the kitchen amenities the designers thought we should have, they forgot we needed to be able to access the cupboards, hold open the fridge door, and we had only 12 inches of workable countertop space. The retrofit cost $27,500. It's the same old rhetoric that we are supposed to have a place to live in, but don't let us use all of it.
Similarly, seniors residences are built with only a 34-inch door requirement. Are we supposed to shrink as we age? I haven't been doing that, unfortunately. Added to this, the same building code sets the limitation for commercial establishments to have access doors of only 32 inches. The same regulations that allow these dimensions then provide space for a foyer which does not allow a wheelchair to make a turn to enter.
Drugstores, restaurants, every Liquor Control Board store that I know of, except two in the province, all have 30- to 34-inch entrances with the same turns. Are we not allowed, because of our disability, to eat, imbibe or medicate? How are we to access these dimensions? I personally have to sit outside of many of these establishments, my drugstore especially, and I have to knock upon the window in the hope that some good Samaritan will take heed and come outside and serve me. Try doing that at 20 below. Am I not allowed the right to see what I wish to buy?
Currently in Kitchener, a townhouse development is being reoffered to the public by CMHC. While this is not a provincial project, the fact that a ramp is being provided for one of these units is good. However, no thought has gone to providing a bathroom or bedroom on the first floor. There are 18 stairs to climb to reach either facility, with no elevator. This type of attitude extends to the provincial arena as well. We need systemic advocacy.
1150
Transportation for the disabled is also being denied to many of us. The funding cuts announced for the municipalities were not supposed to further affect the disabled community's parallel transit services in 1996. Your cut last fall was supposed to be sufficient. The city of Waterloo has taken it upon itself to reduce last year's funding by 10% this year and a further 10% next year. This will reduce our opportunity to access rides. Who will get priority? Those of us who work or those going to school? What about the rest of us? The parallel transit system which operates in Kitchener has announced an increase of 95 cents a ride and a proposed increase in Waterloo of $1.80. How can anyone on a disability pension afford to go out? Our ability to volunteer, shop, visit friends and family or go to church is being taken away from us.
The repealing of the Advocacy Act takes away our opportunity to fight for our rights. What is fair about $2.35 and $3.20 fares for specialized transit when the local transit authority, Kitchener Transit, offers $1.60 cash fare with discounts for bulk ticket purchasing to the walking public? Anyone going to school or university will need five return trips a week on specialized transit. How are we going to pay $100 to $140 for transportation each and every month on less than $650 to $800 income monthly? You'll notice there's no allowance here for shopping, doctors' appointments or recreation included in this. Advocacy, systemic and individually, is required. Do you still want to deny us equality?
Housing starts have been stopped to house the disabled and the poor. Subsidized housing in Waterloo region has a waiting list of five years for any apartment. Ontario Housing does not have any accessible units and has been depending upon co-op housing to provide same. There is no hope for a disabled person to move, whether a resident or someone wishing to become one, because you have cancelled all those units which were available and which were on the drawing board. You are eliminating rent controls, which will immediately result in devastating rent increases, without a doubt. You're proposing to give rental allowances, but will they cover the increased cost? Extremely doubtful. What happens then? Where are all the disabled going to live?
You incarcerate us if we demonstrate, yet you will not give us the opportunity to be heard by denying us access to advocacy at every level. Bill 19 is a disaster to the poor, to the homeless, seniors and the disabled, and their rights to be equal partners in life. You forget that most of us have participated in the workforce to keep this province alive. Yet now you discard us without justification and remorse. Our pride to be an Ontarian is being stripped away since you don't consider us worthy of being equal citizens of Ontario.
The changes to the Substitute Decision Act and the Consent to Treatment Act also deny all of us our basic rights as human beings. Independent advocates and rights advisers are being discontinued under Bill 19. You are assuming that the family and the care givers are the best people to rule and regulate our lives. Yet the legal aid problem and the OMA's doctors' rates and where to practice are just a few examples of how this system just does not work. This vested interest discriminates against all of us who need help.
The right of someone else having control of your future is scary. How would you like not to have any bearing on what you may or may not do? Go out for a walk. Have the police come to your doorstep and forcefully take you away because someone else determined that you were not responsible or incapable. Would you like your parent to be removed from the home because another member of the family decided they were incapable in living within society? What if it were you in this position? This is the funny part. Realize everyone here could be removed from society the same way.
You're automatically making legal incarceration for anyone who's had any sort of psychiatric disorder regardless of their current status. Are you stating that there are no psychiatric survivors? What guarantee do each and every one of you have that you will not be the next victim of spousal abuse, rape, swarming, mugging or vehicle accident?
I'm going to do some jumping here to get everything in. Early in this hearing a representative from Sick Children's Hospital presented a blanket approval for the consent for children that did not in any way address the plight of the adult population in this province. The protection of being able to hide and justify one's mistakes is being given to those who make the mistakes. Is this not double jeopardy to those who are receiving treatment? Malpractice lawsuits will surely be eliminated because the horse will own the cart.
Did we not learn from the happenings in Orillia in both the private and the governmental institutions? The physical and verbal abuse, the restraining. Most of us believe in a life thereafter, but no one has given the government the right to provide us hell on earth. What are you doing to the most vulnerable of our citizens? Are you prepared to build and operate these jails of conscience?
After hearing of life without advocacy, would you feel secure of your health, of your family's future, or are you telling those of us that need your help that you just don't care? Are you prepared for the legal implications that can affect every area of your or their financial future with all financial assets being stripped away before being able to qualify for assistance?
I'm going to leave it there. The last two pages that I have here are from southwestern Ontario, Mr Chair, including your region. This is the result of all of the meetings conducted by the Advocacy Commission in that area. That's telling you what our problems are. They're there. That's coming from everybody. Thank you.
The Chair: Thank you very much, Mr Gallagher, for your presentation. I appreciate you taking the trouble to come forward. This committee will recess until 1:30.
The committee recessed from 1159 to 1331.
QUEEN STREET PATIENTS COUNCIL
The Chair: First on the agenda, from the Queen Street Patients Council, is Ms Chambers, facilitator.
Ms Jennifer Chambers: I've given copies of my talk to Donna Bryce, the clerk. I hope that you will take the opportunity to read it.
My name is Jennifer Chambers. I work for the Queen Street Patients Council. The patients council is an organization representing psychiatric consumer-survivors who either have used the facilities of Queen Street Mental Health Centre or live in the Queen Street Mental Health Centre catchment area. It's the mandate of the council to represent concerns of patients to the system so that the system will operate more on the patient care basis than on what the system needs.
The Queen Street Patients Council is a member of the Ontario Advocacy Coalition and wholeheartedly supports its submission to the committee. The patients council participated in the process leading to the appointment of the Advocacy Commission, and we speak from experience of the absolute necessity of independent advocacy and rights advice that is accountable to the community of vulnerable people.
Like many members of the disability community, we accepted the Substitute Decisions Act and Consent to Treatment Act because we believed that our rights would be protected through the use of the Advocacy Act. Now that it's gone, we're quite concerned about the protection of our rights. Contrary to what's been suggested by some, the Mental Health Act and common law allowed health practitioners and families to take action whenever there was danger to any individual or individuals. It's our position that our fundamental rights and liberties were safer when they were covered purely by the Mental Health Act in common law. An example that some people have used to support the concept that doctors are forced to respect people's right to consent over that person's wellbeing is the case of man who died at Sunnybrook. In fact, the law did allow treatment in that case; it was the doctor's ignorance of the law that was the problem.
Ontario's Mental Health Act was a piece of legislation of which to be proud. It was routinely violated, but it offered shelter to psychiatric patients from some of the abuses that survivors are all too familiar with. The Consent to Treatment Act and Substitute Decisions Act diminished some of our rights, and Bill 19 proposes to reduce our rights further while removing the Advocacy Commission dedicated to our protection.
I'll review some of the problems with the legislation and give some examples to illustrate our points, but I reiterate, we would prefer to do without either of these acts and revert to the Mental Health Act and common law. I won't address all of the points in the paper; I'll just address some of the points I think would be best highlighted by the concerns of our particular constituency.
Context of Bill 19: The Mental Health Act required doctors to acquire informed consent before they could administer treatment, which usually meant drugs. Despite the existence of this requirement of informed consent, it was fairly routinely violated. In my work at Queen Street Mental Health Centre I've yet to meet a patient for whom all the requirements of informed consent were met, which means telling someone what their diagnosis is, what the proposed treatment is, how it's supposed to help, all of the side effects and the alternative treatments. People who have asserted that the did not want to take drugs reported being threatened in some fashion. They were told that they could be made involuntary patients, that they'd be forcibly injected or restrained, that they'd be found incapable or that they'd be summarily discharged. My experience was echoed in the auditor's report of 1992, looking at Queen Street Mental Health Centre, that found requirements for informed consent weren't being met.
It's very important that you realize that dangerous treatments must involve informed consent. Psychiatric drugs are dangerous treatments. They can cause tardive dyskinesia, which is brain damage that can be irreversible. The effects can be debilitating, usually involving involuntary muscle movements, facial grimaces and spasms, writhing. By the time these physical effects appear, it's often too late to stop the progress of this drug-induced disease. I won't go into every possible problem that can result, but some of the more life-threatening ones are throat spasms that can cause difficulty breathing and swallowing, which means that psychiatric drug users can be at greater risk of choking to death on food. Some people who could have been assisted by help other than drugs are not offered it in provincial psychiatric hospitals, and can instead end up permanently disfigured or disabled by drugs, so that along with their original problem, they can have this problem added. I've not met anyone at Queen Street who was offered any treatment other than drugs.
The tragedy of these drug-induced diseases is compounded when the person is unaware that what they're experiencing is drug effects, and instead believe that it's part of their mental illness, and they become afraid of themselves. If fully informed, some people would choose psychiatric drugs; other people would choose not to take the drugs and decide to exist in the situation that they were originally in or with some other form of assistance. There should be some choice available, other than just drugs, for consent to be meaningful.
Under the Mental Health Act, doctors could have been held accountable for violating the requirements of informed consent and could have been subject to a fine, not more than $25,000, for committing statutory breach of duty. The Consent to Treatment Act abolished fines and allowed the requirement for obtaining informed consent to include implied consent. As anything other than active resistance tends to be construed as consent, and active resistance can result in people being forcibly injected and restrained, this means that the meaning of consent is lost. While it was imperfectly observed, the Mental Health Act did give us something to appeal to that the Consent to Treatment Act diminished.
Most of my concerns with Bill 19 are about when people are found incapable, but there are some problems when people are capable as well. One example would be the potentially serious problem of the Health Care Consent Act permitting capable people to be treated in emergencies without their consent if the health care practitioner can't communicate with them because of disability or language. In the psychiatric context, the danger from people receiving a psychiatric diagnosis is that their agitation, if they can't communicate to the doctor, might be justifiable but they won't be able to explain this if their communication isn't facilitated somehow. Someone who's then treated with psychiatric drugs can become quite incoherent. Instead of amendments reducing liability, the public would be better served by providing health practitioners with facilities for diversity of communication needs.
The rest of the points are when people are found incapable. I won't mention all of them; I'll mention some of our major concerns.
One of them is the loose criteria for people eligible to be guardians or substitute decision-makers. The definition of family is expanded in Bill 19 to include anyone related by blood, marriage or adoption. Bill 19 removes the requirement in the Substitute Decisions Act for a statement from the potential substitute decision-maker that they've been in contact with the person in the last 12 months. These changes allow people who have had no contact with an individual in years, or at all, or with whom there might have been an abusive relationship, to become a substitute decision-maker. If no recent relationship or no positive relationship existed, the substitute decision-maker wouldn't be able to meet the criteria that are elsewhere, in the Health Care Consent Act, to act according to the person's values and beliefs. Generally, people would be better protected under the auspices of the public guardian and trustee than they would be being represented by a distant relative. The public guardian and trustee has certain procedures they have to follow that allow better protection of people's rights.
While I think families are important, often wonderful sources of support, and deserve their own means of support, it also must be recognized that families can be a danger to people. A study of elder abuse found that at least 4% of elders were being mistreated, which means 10,000 elders in the Metro Toronto area alone. A large number of people in the psychiatric system are survivors of abuse. Temi Firsten did a study that was published in 1988-89 of five Toronto hospital psychiatric wards and found that 83% of the women interviewed reported severe physical or sexual abuse in childhood and/or adulthood. I knew a woman who was battered and, because of the stress of her situation, ended up in the psychiatric system. As a result of having a psychiatric history, she lost custody of her son. The batterer often appears much more capable and coherent than the victim. It seems reasonable to me to expect that a truly loving family wouldn't mind their loved ones having access to an outside source of advocacy and support.
Another point is that with the exception of rights advice for civil commitment and financial incompetence in psychiatric facilities, rights advice has been stripped away. A person can be deemed incapable and not told that this has happened, and that they're being treated as incapable and not told that she or he has the right to apply to the review board to oppose the finding. The person is also not told they can apply to the Consent and Capacity Board to have someone of their choice, rather than a person who might be the substitute decision-maker, appointed. Bill 19 removes the requirement that the person meet with a rights adviser before the public guardian and trustee can become their guardian. The public guardian and trustee simply informs the person they are their guardian and that they can appeal to the review board to review the incapable finding, but they'll get no assistance in doing so. Having rights that you're not told that you have and that you have no assistance to access, especially for the psychiatric survivor community, is a cruel joke. It's a Kafkaesque system. Without rights advice, a person in this situation is more at risk of losing their rights without due process than is someone who is charged with a crime.
We have concerns about changes to temporary guardianship allowing someone to be now held for 90 days without even notice that there's a guardian acting for them.
I won't go into detail about the powers of attorney. I'm sure you've heard about some of the problems with the Ulysses clause.
Another great concern of ours is the conflict of interest that's involved when caregivers can act as guardians and rights advisers. There's a blatant conflict of interest when people who can benefit from where someone resides and decisions that are made about their care actually have the ability to be guardians of their property or person. According to Bill 19, rights advisers can be designated by the minister or psychiatric facility. The conflict of interest inherent in this situation should be obvious.
At Queen Street Mental Health Centre the patient advocates were approached with complaints by patients of abuse by staff 41 times from 1986 to 1992. It's safe to assume, as with all abuse, that this is just the tip of the iceberg.
The day Bill 19 was introduced, the auditor's report described facilities for developmentally disabled people at which staff were spending people's personal needs allowance on expenses that were supposed to come out the facilities' budget. At London Psychiatric Hospital in 1992, male staff were routinely stripping teenage girls naked and putting them in solitary confinement. At Brockville Psychiatric Hospital, a patient was returned to the same floor with the same staff after having reported having been raped by one of them. The staff in question threatened her and she withdrew her complaint. There was a social worker who was aware of what was happening -- in fact, the person that the girl complained to -- but she did not pursue the matter because she did not want to interfere with her relationship with her colleagues. Some staff have reported their fellow workers, but this is rare and they often pay a price. In one small town with a psychiatric facility, a woman who had reported her fellow staff for abuse left town after being threatened. There should be whistleblowing protection for staff.
But the point is that the people who are in the best position to abuse vulnerable people are the ones whom they are dependent on. This may happen in a minority of cases, but there's no way of telling which staff or which family members are the ones who put vulnerable people at risk. There's no way of telling this. There must be some outside source of help that abused people can turn to. That's why there must be advocates or rights advisers who are independent of care provision and only accountable to the community of vulnerable people that they exist to serve.
The day the Advocacy Act was repealed the Minister of Health was heard to say in the press scrum afterwards that "Contrary to what we've been told, primary care workers do not abuse their patients." We beg the minister to look at the evidence to the contrary available in the research, court cases, inquests and personal stories.
Rights advice when consent and assessment of capacity are at issue again have the staff in a conflict-of-interest situation, as it is usually staff who would be the ones treating someone without consent or making the finding of incapacity.
The right to privacy is an issue that came up in Bill 26 and again in Bill 19. It appears that sections of Bill 19 would allow regulations permitting an assessor or anyone who simply states in writing that they want to make a guardianship application free access to personal patient records held by any regulated health professional, with the exception of what's covered by the Mental Health Act and the Long-term Care Act. The possibility of serious and damaging violations of privacy is considerable. You could interfere with vulnerable people's willingness to seek help.
Finally, we're very concerned about reducing restrictions around restraints and electroshock. The Substitute Decisions Act allowed a guardian to consent to the use of restraints only if it was part of a guardianship plan. Bill 19 removes this requirement. It means that the limited accountability provided by having to give the use of restraints some forethought and inform the court would be gone. There's no reason to believe that this would not allow unlimited use of bondage and locked doors in homes or other places of residence.
Restraints are dangerous. Even their use in a facility that is supposed to use them safely and monitor their effect doesn't guarantee any safeguarding of the individual. I have a copy of an inquest report showing that in 1994 an inquest was held into the death of Celia Thompson, who died August 14, 1993.
Celia Thompson had been placed in four-point restraints on August 13. She was on three different psychiatric drugs, some of which would have had the effect of lowering her blood pressure. Although the hospital protocol at Queen Street Mental Health Centre called for vital signs to be taken every 30 minutes, at no time did a nurse or doctor take her blood pressure or her pulse rate. Protocol called for the removal of restraints on a rotational basis and the passive exercise or massage of limbs. Obviously the designers of the protocol were concerned about circulation stasis. But there was no restraint release at any time.
In the 24 hours prior to the patient's death, she had only 550 millilitres of fluid uptake and no output was measured. The consultant noted that dehydration and decreased urinary output could be a factor in clot formation, as could be, I would tend to believe, the drugs that lowered her blood pressure and the lack of release of limbs. On August 14 Celia Thompson was dead of an acute pulmonary thromboembolism. This happened in a place that's governed by protocols that are supposed to prevent this kind of thing happening when someone's in restraints. Imagine the danger if restraints are used in someone's home or an unregulated facility. Please don't take the use of restraints this lightly.
The Health Care Consent Act also allows substitute consent to electroshock as aversive conditioning. I believe this is an assault on a person. An expert who is up to date on the use of aversive conditioning, which is a branch of learning psychology, would also be able to inform you that it doesn't work. This isn't news. People knew this when I was in university. Positive reinforcement works far more effectively. Aversive conditioning tends primarily to cause an aversion to the person who is giving the conditioning. People quickly habituate to pain that's given them.
We hope our comments on Bill 19 will be helpful, but we do want to emphasize our position that we'd prefer to be without the Substitute Decisions Act, the Consent to Treatment Act and the Health Care Consent Act and return to the auspices of the Mental Health Act and common law. Ontario needs rights advice and systemic advocacy. To be effective, independence, accountability to the community of vulnerable people and money are required.
1350
In closing, I want to read an excerpt from a letter that was written by Mike Harris on June 15, 1993. He said:
"The NDP's approach to deficit reduction could have a profound and far-reaching impact on our social services and health care systems. In achieving short-term savings, the government will create long-term pain for the disabled with its ill-conceived changes. While my party and I are heartened that the government is coming to grips with the crisis in costs faced by the broader public sector, we are concerned about the issues of quality, access and fairness as it affects people with disabilities. So we will be working to ensure that these things are not compromised by the NDP's `slash and burn' approach to deficit reduction."
Under the circumstances it seems like an ironic statement, and I hope that the government will live up to what their original concerns were about the safety and protection of disabled people in Ontario.
Mrs Boyd: Thank you very much for your presentation. I think I saw a little bit of shock on some my colleagues' faces across the way when you suggested you were better to go back to common law and the Mental Health Act than to have the Health Care Consent Act and the Substitute Decisions Act without the Advocacy Act. We certainly heard that when we were doing that legislation from lots of patient groups, that the only way in which some of the provisions around substitute decision-making in particular would be acceptable to people would be if there were an advocacy organization available to assist them. I gather you haven't changed your minds. In fact, if anything, you feel more strongly about that today than we even heard in 1991-92 when we were making that legislation. Is that correct?
Ms Chambers: We feel very strongly about it. Obviously now, in retrospect, we wish that we hadn't supported any of the acts, but then of course we had no way of knowing that the Advocacy Act would be so quickly abolished.
Mrs Boyd: Well, none of us did. It was quite a surprise to a lot of people. I don't think we've ever had a government who set out to destroy everything that the previous two governments did before in the way that this one has, so that was obviously not within our experience, it wasn't something anybody expected.
The people you serve are all people who are part of the mental health system. They may be sometimes inpatients, sometimes outpatients, that sort of thing. I'm curious as to what your impression is of the ability of the psychiatric advocate's office to protect them at least while they're in a facility and whether an expansion of that to community programs would be acceptable to your group.
Ms Chambers: I think it's good that the Psychiatric Patient Advocate Office has a rights adviser available on site in facilities. As with all of the advocacy that we're recommending, we emphasize that we believe it's important that advocates be independent and accountable to the community of vulnerable people, and we'd like to see this happen with the Psychiatric Patient Advocate Office as well.
Mrs Johns: Thank you for your presentation. As you can see, it wasn't as bad as you thought before you got started.
I just want to talk a couple of minutes about emergency treatment and then try and move on if I can. On page 3 of your document you talk about emergency treatment and the Health Care Consent Act. Basically what you're saying there is that the patients you're representing are worse off as a result of us, that they may have an inability to communicate with the doctor and we would therefore treat them and it may not be what they wished to have happen.
From my perspective, and I'd like to be corrected if I'm incorrect, but it's my understanding of that section that if the health practitioner knows that the person doesn't wish to be treated, he cannot do that. That's section (e), I think, of 3. Then it goes on to say that they have to always be making an effort to find some way to communicate with this person. As soon as that happens, they have to communicate with the person.
My fear in not implementing this section is that someone could come in and we would have to stop and not treat them. You could see that, for example, if someone had a car accident or something happened, and we would be sitting there, we can't communicate with them, so I'm caught between a specific problem with the system you have versus what's good for the people of Ontario. Can you talk about that with me and tell me if I'm misinterpreting that or what you actually meant? Maybe I'm misunderstanding.
Ms Chambers: I think the difference is that in physical emergencies, where people's lives are threatened, the need to immediately treat is more obvious and the provisions to need to do so. In psychiatric emergencies or psychiatric crises, there isn't necessarily a life-threatening situation going on and the matter of whether or not it's an emergency is sometimes a matter of interpretation of the physician.
My concern is that people who are unable to speak or people who are unable to communicate clearly enough in English will be suffering the effects of the treatment without consent or ability to communicate. I'd like to see there be facilities established where physicians more easily access people to help them with that kind of communication.
Mrs Johns: So from your standpoint, you're basically talking about a person not being able to understand a language. Am I understanding you correctly still?
Ms Chambers: Yes, or someone who communicates with sign language or is unable to speak clearly. It also might apply to people who are labelled developmentally disabled and who just need some extra support that the doctors aren't used to giving in order to communicate well.
Mrs Johns: I think the problem is the emergency definition then.
Ms Chambers: Yes, that is part of the problem.
Mrs Johns: I believe that if we can wait, then we should, that's not an emergency then. From my standpoint, I believe that it will only be serious emergencies that will be treated in that definition.
Mr Michael Brown: Welcome to the committee. I certainly enjoyed your views. I want to go back to the point that Mrs Boyd was raising, that your preference here, given the circumstance, would be to just repeal the acts, go back to the Mental Health Act and the common-law rights that all Ontarians have. That's an interesting concept and, in my view, you're often right. I don't that you're right in this particular situation, but often when governments try to codify rights, they actually take rights away.
My question is the accountability to your community or the community you represent by advocates. I'm wondering, given what's going to happen -- because what the government says is going to happen, they're not going to change it -- what we might be able to do to help you, because even the government itself says, "We're going to have this informal system," blah, blah, blah. Is there something we should keep in mind as legislators that would help your community to more effectively advocate in the situation we're about to find ourselves in?
Ms Chambers: You could emphasize as a policy issue that, even if advocates end up coming from, say, the funding of existing organizations, that they none the less be controlled, directed by the people they serve rather than, say, the facility that they exist in.
Mr Michael Brown: Does your community of volunteers receive any kind of government support or public support?
Ms Chambers: The patients council receives enough funding for two part-time staff.
Mr Michael Brown: So could they act in effect as advocates in a measure that I understand is limited by this act to some degree? But could that be one of the answers here?
Ms Chambers: An organization like ours that's appointed by the people they serve, yes, would be a good model. One full-time equivalent position for an organization in the largest psychiatric hospital in Ontario would be awfully difficult to meet all the needs of the people.
Mr Michael Brown: Extraordinarily challenging.
Ms Chambers: Yes. But that sort of model, I think, is a good one.
The Chair: Ms Chambers, thank you very much for taking the trouble to make a presentation here today.
1400
NADIA DIAKUN-THIBAULT
MICHAEL KLEJMAN
The Chair: Our next submission will be made by Michael Klejman and -- I'm going to have trouble with this one -- Nadia Diakun-Thibault.
Ms Nadia Diakun-Thibault: That's not too bad. Not quite accurate, but not bad.
The Chair: I guess I got it close. You have one half-hour. We will be pleased to hear your presentation.
Ms Diakun-Thibault: Thank you very much, Mr Chair. I am Nadia Diakun-Thibault. I am soon to be a former member of the Ontario Advocacy Commission. Michael Klejman, who is here with me today, is also soon to be a former member of the commission. We would like to express regrets from Jane Darville, who unfortunately was taken by the flu and could not join us.
Thank you very much for the opportunity for our appearance. I would like to view this opportunity as an exercise in natural justice. This is a chance for you to hear the other side.
In the quest for a civic community, government and the public, whom it serves, must find ways of collaboration: not just strategies or tactics to achieve an end but a new way of doing business around public issues. The new way of doing business is called collaborative leadership. Collaborative leadership draws into its sphere responsibilities, duties as well as rights. It makes the citizen and his or her government equal partners working towards solutions, not patchwork, on public issues. There is less reliance on government to deliver every want and need. There is more emphasis on creative thinking and problem-solving.
In December 1991, when Elaine Ziemba, Minister of Citizenship, appeared before the standing committee on administration of justice, she must have felt a sense of pride and satisfaction, having tabled just months before a piece of legislation full of good intentions, flawed and rough in its drafting albeit. By 1994, we would have a basket of useful legislation intended to give the citizen greater control over matters of moral autonomy.
The error in judgement was not in the legislation and its noble intents but in the implementation, in the lack of leadership within the Advocacy Commission. The answer to the question "What went wrong?" can be classified as: mistrust, of government, of special-interest groups, of service providers, of families; dominance, of special-interest groups, angry individuals and powerful professional associations; failure, of government to make clear its intentions, of special-interest groups to rise above parochialism, of leaders to lead. And this before the legislation even received royal assent.
The Advocacy Act draws its genesis from two decades of societal change that gave rise to the notion of social advocacy. The O'Sullivan report describes social advocacy as an activity:
"Similar to legal advocacy, social advocacy means speaking or pleading on behalf of others and entails many of the same professional responsibilities... The basic difference, however, is that a social advocate speaks or pleads on behalf of another by using non-legalistic measures: He or she, unlike a lawyer, does not directly invoke or participate in the legal process to obtain the desired result."
This definition, I submit, is unsatisfactory. The social advocacy concept had not evolved nor been clarified by 1991. Nor was it further developed after extensive committee hearings. It was the one glaring flaw of the legislation. It did not clearly define advocacy. For legislation to work, we need to know what essence drives it.
Commissioners in private meetings and discussions had personal notions of advocacy and appropriateness of activities, some of which clearly were proscribed for the commission. I had a sense that notions of ethics, legality and public policy implementation were of little importance to some commissioners. It was more an opportunity to play out whatever personal biases one had, especially on the part of some "consumer" commissioners. Such activities seem more like lobbying rather than advocacy.
Before long it was clear, at least to me, that there was no place or role, in the view of some, for commissioners appointed by the minister. I should like to believe that my appointment was the result of the minister's belief that the experience of a family member of an Alzheimer person would have been of particular interest and usefulness to the Advocacy Commission. The minister understood; her mother had Alzheimer disease. Some of you were kind enough to share privately with the Alzheimer society that you understood our concerns, when I represented them when you were in Ottawa, from personal experience with a parent.
In this regard, it is incumbent upon this committee to take more than just passing notice. In the wake of this government's fiscal agenda, many elderly, those with neurological disabilities, those with developmental disabilities and their families will feel the backwash. Fiscal responsibility need not be callous.
Spare not the commission. It has demonstrated its inability to not do the job well. Do not be seduced by proposals that would give this commission a new look. Advocacy must be done well or not at all. It must be exercised competently and without bias. From the materials that we saw as commissioners, the elderly are the most vulnerable. A prudent option is the creation of an ombudsman for the elderly, reporting to the Legislature and serving the public. I ask that this committee bear in mind that the public will not forgive any government if it abandons its most vulnerable.
Mr Michael Klejman: Moving on to the second of a three-part team, I'm Michael Klejman. I also was appointed to the commission in the fall of 1994. In my remarks to the committee, I will not focus on the old legislation or the proposed new legislation contained in Bill 19. I want to share with you my experience and some of my thoughts on the future of advocacy and the needs of vulnerable persons. These will not be very profound or extensively researched views. Rather, they will be coming from a person who feels as uncertain today as he was some two years ago about what is the right or wrong way of ensuring that rights of individuals are recognized, individuals are aware of their rights and how to balance these with societal needs and constraints.
In the fall of 1994, I was approached and invited for an interview by the then Minister of Citizenship to become a commissioner on the newly formed Advocacy Commission. It was a fairly new sphere of human service that I had not been directly involved in in all my years of work in social and health services.
When my appointment was confirmed, I was still somewhat uncertain as to whether I should proceed. I was warned at the time by a colleague who had been a strong advocate for years to reconsider, that I would be in for an unpleasant experience. I was also told to be very alert to the politics within and around the commission. I was told that the advocacy movement, with which I was only peripherally familiar and primarily from the perspective of the elderly consumer, was not unified or in agreement about the commission and its consumer appointees. As I have done so many times in my life, I put trust in my abilities to communicate, understand people and get past political and other facades to work at issues face to face.
I have to say that I feel I have failed in my role as a commissioner. As one individual among 12 commissioners, I was prohibited from carrying out my responsibilities as a commissioner. I was labelled and made to feel unwelcome. These are my own observations and feelings. I also observed a rapid process of control being established over other commissioners, manipulation and pressure to the point that individual commissioners did not feel or were able to speak their own minds. In the period of about five months, we, the three remaining commissioners who were appointed by the minister, were prohibited from sitting on certain committees.
It is not my intention to say much more about the workings of the commission except to observe that it was in the process of creating a structure that, in my opinion, would have led to a system that was confrontational, driven by extreme views that appeared to reject any provider of services as untrustworthy, without principles and fundamentally incongruent with objectives of the commission. This view I think extended to include families of vulnerable individuals.
The system for advocacy that was emerging from the commission did not have the time to move beyond the rights advice, thus avoiding the potential of entrenching such a schism.
I feel strongly that the demise of the commission was necessary. I do regret the impact it will have on the concept and principles of self-determination and the need for safeguards for vulnerable individuals. No one segment of the society can claim total right to and usurp control over mechanisms and legislative provisions for protection. Health professionals do not have a monopoly, families and close relatives do not, and neither do vulnerable individuals. We all must recognize that it takes all these individuals to ensure that people are not abused and that their ability to live in security and with a sense of self-control is not taken away from them.
Where do we go from here? I would strongly suggest that the government that places great value on individual responsibility and challenges its citizens to take a full account for their actions needs to have in place legal provisions that define what these responsibilities include. Whether this is accomplished through a single piece of legislation or through existing acts may not matter. These provisions ought to set out requirements on professions, agencies and institutions, as well as families and government ministries. These provisions should involve educational requirements and specific provisions related to access to services.
1410
I am not convinced that a purely voluntary system will work, maybe because I have not seen such in action in my own realm of work. The concept of employer-vested provision of advocacy has its real limitations as well. Maybe we need to build on existing experiences and look at areas such as the rapidly growing elderly population in which to pilot initiatives that test both employer-based advocacy and the external voluntary approach.
Thank you for the opportunity to share my views with you. We'd be prepared to answer any questions you have.
Mr Marchese: It's good to see you both again, in different capacities. One of the points I guess for me is that I've been involved in many volunteer organizations over my lifetime and I've never found uniformity in our groups. It's very difficult to find homogeneity of thought and things evolve in organizations in terms of how we get there to solve those differences. Obviously, both of you have pointed out differences that you've had with the commission. I'm not sure how we solve these from the outset, and I'm not sure that as we set up an organization we can solve all of these problems from the beginning. Things emerge, and then we attempt to solve them. Is that a reasonable thing to say or to expect from organizations?
Mr Klejman: Yes. If you're referring to the functioning of the commission, I agree with you and that was the mindset I had when I approached the commission. I found, as time went on, fairly quickly, that, first of all, I -- and I was just one of four people -- was deemed not to be acceptable in certain parts of the commission's life and the commission's work. Secondly, there were issues of major importance that were being set aside because some members of the commission were determined to put their agendas forward and carry the day. The dynamics are what they are, and sometimes they work to the best of the process and sometimes they don't.
Mr Marchese: My understanding is that on the whole, over 80% of the time there was agreement by most of the board members around issues that you were dealing with. Obviously, there was disagreement some of the time. That seems to me reasonable, and from time to time you'll get disagreement from some of the board members. Do you have a reaction to that?
Ms Diakun-Thibault: Could I address that? I agree with you that there shouldn't be homogeneity of thought. Certainly, I would never advocate that. I didn't enter this job or this role as a commissioner with the expectation that everyone's going to think like me. That would be foolhardy. I think you know very well that what makes Parliament work is certainly not that there is a homogeneous mass of thought but that there are different opinions.
The problem with the commission was that there were certain legal inabilities. I would state that albeit we had legal advice and constant legal advice, there was on occasion an unwillingness of some commissioners to behave and to act as a crown agency with a vast amount of power and a vast amount of responsibility.
We did try to amend. Yes, there was certainly agreement, but if you look at every single one of the resolutions that was passed, for the most part those were non-contentious issues, except for the one motion that was passed in December 1994 here in Toronto. We tried with a motion in Ottawa in February to redress that. It failed. It failed because we were outnumbered eight to three. It's not difficult to have so-called consensus if the numbers are on a particular side.
Mr Klejman: If I may just follow up, there's a difference between having discussions, debates and disagreements and a situation where rules are set to prohibit some individuals within the commission from participating, even, in the discussion process and decision-making.
Mr Marchese: I guess it's difficult to comment on the internal workings of a committee, but my general view is that a commission is set up to represent many different points of view and sometimes it may be difficult for some to feel that they're not being represented. I understand that. That will happen, and my view is that we work that out.
Ms Diakun-Thibault: We tried.
Mr Marchese: Or we try.
Ms Diakun-Thibault: It failed.
Mr Marchese: But I want to get on to another question. You're suggesting an ombudsman for the elderly. That would be one office representing one particular group, as opposed to the kind of office we thought was set up to represent all groups across the board, which I think is much more effective. I'm not convinced the government would think that's not a bureaucracy, creating another bureaucracy, so I'm not sure how far that proposal would go. Is it your sense that creating such an ombudsman to represent only the elderly is useful as opposed to a cross-community kind of commission, as we have set up?
Ms Diakun-Thibault: At this time, yes. Mr Marchese, you will recall, because you were at my confirmation hearing, that I was very much in support of advocacy and I still remain so. I am no longer a supporter, and it is unfortunate that I have to say so and be so frank, of the Advocacy Commission. I believe that demographically the argument falls very much on the side of the elderly. We have an aging population; even the words are now becoming cliché. We have to address the problems and difficulties of the elderly.
Every single day in my regular capacity as executive director of the Advisory Council on Aging for Lanark, Leeds and Grenville, I receive a telephone call either from a family member or a spouse who is having a great deal of difficulty with whatever. It is very difficult work to try to solve their problem or help them resolve their problems, and the elderly need particular attention at this time.
Mrs Boyd: I think it's very unfortunate that your solution to try to solve the problems was to take the commission to court. You lost in that because the commission was within its rights to make a decision as it did. It's very important when we talk about trying to resolve disputes that we recognize that there was a dispute -- you had a disagreement; you took a particular course. I can well understand why that is not a very happy situation for you, but it seems to me also that your proposal is taking exactly the same step you complained about the other commissioners taking. You are looking at one particular group and the service of one particular group over the others, which is in clear contravention of the notion of cross-disability provision of advocacy.
Mr Hastings: My questions relate more to the functioning of the past Advocacy Commission in terms of, was this a schedule A, B or C agency? In other words, did it distinctly have an at arms's-length relationship with the minister?
Ms Diakun-Thibault: It was a schedule 3 agency and it was intended to have the arm's-length relationship with the minister. You will recall that it was November 1994 where there was a huge bill proposed by the NDP of the time. It was called the Statute Law Amendment Act (Government Management and Services) which would have given the commission an even greater arm's-length relationship with the ministry. In that bill, under pressure of your party and the other opposition party at the time, those sections referring to the Advocacy Commission were removed.
Mr Hastings: Given that we had an experiment then with trying a bureaucratic approach to this resolution of trying to achieve some kind of a mixed advocacy model, why do you now advocate that an ombudsman approach would be any better of a model, given the Ombudsman we have for the province of Ontario, who doesn't even come to the committee and resists in many instances requests for information?
Ms Diakun-Thibault: That's a very difficult question to answer. First of all, I think you're almost trying to kind of back me into a corner to say something about the current Ombudsman. I shan't do that. I believe that having one person dedicated to look at the systemic problems that face the elderly -- you could very easily define the roles and responsibilities of the ombudsman for the elderly -- would be a better solution rather than a schedule 3 agency.
I did believe that a schedule 3 agency, at the time, might have been a very good solution. I think it is one thing you are incumbent to do: You must address the problems of the elderly, who will be left out in a lurch. If you wish, I would happily invite you to come to our neck of the woods, spend several days with us and meet with the elderly and hear from them yourself.
1420
If I might, I'd like to say something about the statement Mrs Boyd made about our going to court, taking the commission to court. We filed for a judicial review in the Ontario Court, which we felt was a proper course to go. We tried to amend; we found that there were instances in that motion, there were elements of that motion that were clearly ultra vires the commission. That is why we had to seek redress in the Ontario Court.
We did not lose, however. We were never heard. The commission changed the resolution, withdrew the resolution and then imposed five new resolutions, which effectively in our minds did the same thing, excluded the commissioners appointed by the minister.
Mr Klejman: Hoping to outweigh us and outspend us in terms of our ability to retain legal advice to fight this process. The case was never lost by us.
Mr Hastings: My final question relates to your experience in terms of, it seems to be somewhat misfortunate, if not highly unproductive, in terms of what you went through with this Advocacy Commission. I would be interested in knowing if you could get a copy of the cerebral palsy association's proposal for more of an accreditation model to advocacy, whether you could comment on it in terms of its theoretical or conceptual nature, where you don't get involved in these bureaucratic models of administration, because they usually seem to fail in even their most minimal official objectives or goals.
That particular agency seems to be advocating a way of, from the bottom up, despite perhaps some -- it's almost like a hospital accreditation process, but that is more institutionally oriented, whereas the one they're advocating is looking at a customer service client- or consumer-based approach in terms of having it tied to financial incentives. Completely new to me; it seems like it might have some interesting possibilities.
Ms Diakun-Thibault: I personally would be happy to look at it and offer some comments. I have not seen it.
Mr Parker: I don't know if there's time to get into the question that would be on my mind, but we've been told by the third party that this government hasn't given the Advocacy Commission a chance to prove itself, that it's in its infancy and it's hardly gotten off the ground. Now we're hearing they're already in court and they're falling apart at the seams and all kinds of problems are emerging.
I'm just not clear what those problems are. In the minute I've got I guess we can't get into that, but if we have the chance, I would like some more information about just what sort of difficulties have arisen so far.
Ms Diakun-Thibault: The judicial review and application and our motion are a matter of public record. There's a huge file that you can secure from the Ontario Court at your leisure. If anyone so desperately wishes to have their very own copy, I'd be happy to provide it.
Mr David Ramsay (Timiskaming): Thank you both very much for coming forward. Because of the length of your briefs, I was able to read them while the other parties were in discussion with you. I have to say I feel sorry about your experience in the commission. Obviously, it wasn't a happy time.
If any good is to come from this, I hope that certainly the government members have listened to this when hopefully they do come forward with some sort of proposal, because I think there has to be some replacement for this commission that they are repealing. You've given us some ideas and I'd certainly have to give them some further study, whether there would be an ombudsman-type system for the elderly.
What it does is point out, and I think the previous government had tried to do this also with education and training, where some of these organizations are perfect organizations in a perfect world, where you try to bring together a lot of people who have related interests but don't necessarily share a community of interests, you give them a lot of power and you give them a whack of money, and you throw them all into a room with a mandate and say, "We'll do what you prescribe to do, and what the government is telling you to do here, work on behalf of the people you believe in, and all of that," without allowing growth to happen, where that commonality of interests would need to mature, and under the pressure of having the power to be able to make immediate decisions and with all that money, it creates a pressure cooker.
If you are to embark on such a system such as this, it would seem to me what you'd need to do is to bring the people together who have that commonality of experience and let those relationships mature without giving them the power at first, and maybe start that group off in an advisory position with the intention that, as the group matures and those relationships mature and it looks like they are working effectively together, you start then to give them that mandate.
I think it's unfortunate that this thing just started up too big, too expensive and with such a scope of responsibility that it maybe was doomed to fail, which is unfortunate, because I think all of us around here do believe in advocacy. We have just some different ideas about how we should go about it.
In the remaining time, if you had any other suggestions of how you would think we in opposition and what government should be proposing in regard to advocacy, I'd be interested to hear any other ideas you have.
Mr Klejman: You've touched a number of points and I'd say I agree with the element of participation at the community level, that the local level of individuals representing numerous sectors, not just from the vulnerable persons' side but also those who provide services, who need not just "education" and understanding but sensitization, I think has great potential.
It's difficult to do and there's a fair amount of recrimination that occurs during the initial stages, but that has to occur, besides the commitment through legislation that covers various professions, to truly impose a sense of expectation that to be a professional, whether it's a physician, a nurse, a social worker, there is an obligation within their responsibilities to recognize the rights, and the need to inform individuals of rights has to be built into the process.
We saw some examples during our short time of actually being on the commission, physically, examples in some communities where some of that dialogue was taking place, and we believe some of that work should continue. There's potential for that, much better to develop those kinds of communications and links at a local level than make assumptions that we can create one provincial body that'll run the show, particularly where there's a lack of prior awareness of the kinds of politics that come into play at the provincial level.
There are different degrees of sophistication, determination that different groups bring into this setting. What we saw on the commission is that the elderly groups were in effect losing control, no voice at the commission, and issues of numerically very small segments of our society were driving the process.
Ms Diakun-Thibault: If I were to ask for a favour of this committee and perhaps of government, it is that the next time such social policy legislation is being proposed or is contemplated, you take time to develop, first and foremost, a definition of what it is that you want to achieve. Advocacy never had a true definition. There is no definition in the legislation.
I have my own, out of experience and a studied definition of what advocacy could or should or might be. However, that was not what I saw when I was a commissioner. I think, if I were to ask each one of you now to write down on a sheet of paper what it is that you think advocacy is, you'd give me as many different answers: everything from social advocacy to legal advocacy to lobbying to political action committees. It would be anything and everything.
That's not what I believe was the intention or the intent the minister had in creating the Advocacy Commission. In my mind, I saw this as an opportunity for a lot of vulnerable persons to have a way, to have a system which would address their specific problems, their specific concerns, albeit not legalistically but at least in a fashion where it would be professional, of high calibre and appropriate. Appropriateness is something that should always be first and foremost in mind.
I perhaps erred in my judgement, and it's unfortunate that the commission will be history. However, again, very honestly and very frankly, perhaps that is better for all of us and maybe we can revisit this notion of advocacy at some later date. I hope so.
The Chair: I thank you both very much for giving this commission an inside look at the workings of this commission.
Ms Diakun-Thibault: Thank you for your time.
Interjection.
The Chair: I'm sorry?
Mr Parker: You just called us a commission, but that's okay. We're watching you very carefully.
The Chair: Yes, I'm having difficulty today.
Mrs Boyd: Wednesdays don't seem to be a good day for you, Mr Chair.
The Chair: I'm sure the members will be assisting me along the way.
1430
AIDS ACTION NOW
The Chair: Our next submission is by AIDS Action Now, Maggie Atkinson and John Miller. Welcome.
Ms Maggie Atkinson: Thanks. I'll start. My name is Maggie Atkinson and I'm co-chair of AIDS Action Now. With me is John Miller, who's a member of the steering committee of AIDS Action Now.
First of all, I'll introduce AIDS Action Now and our mandate and then I'll begin to go through our brief, which I've just provided to you. Two things that I want to emphasize are that the rights to determine our own treatment must be delegable to our attorneys for personal care and also that the common law of consent, which is codified in this act, shouldn't be abridged by the act. Those are the two main points that I'll deal with. Then John will deal with the latter section of the brief, which deals with the definition of "partner," a creation of an offence for not complying with the act and changes to other legislation.
To begin, AIDS Action Now is a Toronto community-based activist group fighting for improved treatment, health care and support for people living with HIV and AIDS. Some of the fundamental principles which I think apply to Bill 19 are that we support the right to make decisions and choices relating to one's personal care and health care and to participate in the processes leading to such decisions and choices, which means a full participation in the informed consent process. In addition, we believe it's essential that each individual be able to delegate that authority and decision-making power to a person of one's own choice.
I'd like to make a few comments about AIDS and how that affects health care and treatment. First of all, I think many people are under the impression that with AIDS it's just a steady downhill decline to death. However, the opportunistic infections which can affect people with AIDS range in severity from mild and chronic illnesses to acute and life-threatening. A person can often go from being at death's door at one point to recovering and being able to carry on their own life again. Concomitantly with this, a person's capacity can also fluctuate: At one point you may not be capable to make your own decisions and at another point you regain that capacity. I think there has to be flexibility in the way that substitute decision-making is carried out to accommodate that.
There's a wide range of opportunistic infections which require an equally wide range of treatments. The treatment of HIV is constantly evolving. It's a very difficult disease to treat and manage, and people with HIV are often very sensitive to the very treatments that we seek, so that a person's care is complicated by the fact that they're very sensitive to treatments and will often get adverse reactions. This makes the treatment of HIV very complex and it requires that the patient and the doctor work together to a coordinated plan in dealing with the infection.
Another important aspect of our care is that because it's a constantly evolving field of treatment, we often resort to experimental therapies and experimental uses of already approved drugs. This happens because the standard of care is changing more rapidly than the approved drugs through the regulatory system. At this time, people with AIDS, as well as people with other catastrophic illnesses, have a catastrophic right to decide to take treatments which aren't yet approved. This is provided federally, through the emergency drug release program, and it's essential that we be able to delegate this power to those who are substitute decision-makers. Unfortunately, the way the acts are drafted now, that right isn't delegable. That's one of our main points which I'll begin with, and it's set out on page 2.
There are actually two points here: First, a person with AIDS often has a very active role to play in the consent process and they make decisions on the advice of their physicians and often others, like treatment information counsellors. People with AIDS research treatments on their own and demand access to innovative and experimental treatments through various processes -- clinical trials, compassionate access to drugs and the emergency drug release program. People with AIDS don't just passively consent to the treatment suggested by their physicians and they are quite often very active and request or demand access to drugs. For this reasons, the Substitute Decisions Act, which allows a delegation of have an ability to consent or refuse consent to treatment, is inadequate. It's imperative that people with AIDS be able to delegate, by power of attorney, the right to actively request or demand access to all forms of treatment.
We therefore recommend that subsection 46(8) be amended to allow for a request or demand of any treatment.
As I said, people with AIDS often need access to experimental treatments. On page 4 of the brief, we address this. The problem is that section 5 of the Health Care Consent Act states that nothing in the act affects the law relating to giving or refusing consent on another person's behalf to a procedure the primary purpose of which is research. Many people with AIDS rely on procedures which are experimental, through clinical trials, and we are concerned that this would be considered to be treatment the primary purpose of which is research. People with AIDS need access to procedures the primary purpose of which is research. As a matter of fact, we do have access to that now. The problem is, we need to be able to delegate that ability to our substitute decision-makers.
For that reason, we suggest that section 46 of the Substitute Decisions Act be amended to allow a grantor to make a specific provision in the power of attorney to confer that authority on the attorney, and also that the Health Care Consent Act be amended to allow a health practitioner to provide that kind of procedure, the primary purpose of which is research, to an individual on the request or consent of the substitute decision-maker, the attorney for personal care.
With respect to the Substitute Decisions Act, I'd like to make a brief comment about what we saw as a procedural safeguard that was in the Substitute Decisions Act and that is being removed with Bill 19. That point is addressed on page 2 of our brief at the bottom, with "Execution." We support the requirement that is currently in the Substitute Decisions Act which requires that witnesses to the power of attorney for personal care must have no reason to believe that the grantor is incapable. We think that this helps provide some kind of protection against undue influence, but we don't think that it's overly onerous, because it doesn't put a positive duty on the witnesses to inquire as to the capacity. So they don't have to actually to test the grantor, but if anything seems suspicious or they have any reason to doubt the capacity, then they would be discouraged from signing it if this requirement were in place. So we think that this is a minimum safeguard for the grantor, especially considering that a lot of the safeguards that were put in place by the Advocacy Act have been taken away.
1440
With respect to the issue of consent, the act currently codifies the common law of consent, and we're concerned that there are a number of provisions in the Health Care Consent Act which limit our common-law rights to consent. The act reduces the individual's right to be consulted and informed in a number of instances. In particular, with the definition of "treatment," we are reducing the situations in which consent is required. In the definition of "treatment," and this is dealt with on page 3 of our brief, we object to the whittling away of areas that will require consent.
For example, in the act "a treatment that in the circumstances poses little or no risk of harm to the person" is taken away from requirements of consent. We're opposed to the exclusion of this because we feel it would be an abrogation of the common law. If there is little or no risk to the individual, that's up to the physician to determine, if there's no material risk in determining what information should be given to an individual. However, an individual should still have the right to determine whether they want, for example, a blood test or not. Your permission is still implicitly requested. It can't be just assumed that someone can go poking you in the arm and taking tests and so on just because there isn't a material risk. I think that it's a matter of law that touching without consent is tantamount to assault, and we think that there still should be consent for even matters where there's no risk of harm.
"Anything prescribed by the regulations" could be removed from the consent requirements. We're concerned that is too vague and that there won't be adequate public scrutiny of matters that can be prescribed by regulation.
For these reasons, as we set out on page 4, we recommend that these particular clauses be deleted from the Health Care Consent Act. However, if the prescribed treatments are still to be included in the act, we would suggest that there must be clear criteria which must be satisfied before any particular treatment could be excluded by regulation.
The next thing I'd like to deal with is the issue of the plan of treatment and course of treatment, which is set out on page 6 of the brief. We object to the idea that a health practitioner can present a plan dealing with the whole gamut of illness that a person might have and get consent right at the beginning and not have to seek consent on an ongoing basis. We think that this is impractical, especially with a disease like AIDS, and if it's determined that this is something valid to put in the legislation, because there probably are times when it might be useful, we think that it would be necessary that an individual be advised that they don't actually have to consent all at once to a plan of treatment today to cover the next two years of treatment, but that if they would prefer, the doctor will consult with them or their substitute decision-maker as time goes on.
We're not so concerned with the individual who's capable, but we are concerned that a substitute decision-maker might be encouraged to agree to a plan of treatment now but wouldn't know what the condition of the patient was on an ongoing basis, wouldn't be apprised of how they are reacting to the treatment. I give an example here of a person with PCP, the AIDS-defining pneumonia. The treatment for it's fairly complex; there are at least four standard therapies for it. You can get all sorts of reactions to it. You may progress despite treatment and have to move on through the different options, and what options you want to take will depend on your state of health as you go on. Because if you've had two serious reactions to a drug, you might decide that you don't want to go on to an intravenous therapy, which may be even more toxic. I think it's impossible to determine at the outset which treatments you are going to want to follow; it's impossible to set a paradigm accurately.
Although a capable individual may be able to change their mind as time goes on, the substitute decision-maker may not be available at all times and be aware of the condition of the individual.
We are also concerned that the patient and the substitute decision-maker may feel under pressure to agree to such a plan. Therefore, we think it's essential that both for a plan of treatment and for a course of treatment the individuals be advised that they don't have to agree to the plan or the course but that they could be consulted on an ongoing basis.
One essential thing that I'd like to deal with is set out on page 5 of the brief, and that is that we are strongly opposed to the idea that consent doesn't need to be sought if there's going to be a change of setting. We strongly feel that this would be against the best interests of the patient, that especially where there's a substitute decision-maker involved, the substitute decision-maker or the patient should be consulted before there's a change of setting, because this is material to the patient's care and any change should require consent.
I give the example that many people with AIDS live in the area of the Wellesley Hospital -- that's where their friends and their acquaintances live, that's where their primary care physician is -- and if a doctor decided to put them into a facility that was more remote, for example, even Sunnybrook might not be as accessible to the patient's friends and caregivers, and also if they were put in a hospital that might not be as approachable for people with AIDS. We feel this provision must be deleted from the act.
Also, another point on page 5 is that we feel that it should be made explicit that consent to treatment is a continuous process and that consent must be renewed if there's any material change to any of the matters in the act which constitute consent.
Now I'll turn it over to John.
Mr John Miller: I'll try to go through the remaining points quickly so that we can get to some questions. The first thing I'd like to deal with is the meaning of "partner" in subsection 18(9). When I was here last week listening to the presentation by the HIV legal clinic, there were some questions around this. Particularly Mr Clement, who isn't here, was wondering how to define "partner" without watering down the definition. It is our opinion that the definition of "partner" contained in the act is insufficient, and we recommend that the definition be changed to include "two people who are in a personal relationship that is of primary importance in both persons' lives."
There was some discussion about whether a residence was important, and how long. We believe that the really crucial issue is how important these people are in each other's lives, that solely defining someone's residence as a criterion is not adequate. It could mean that someone is a roommate who doesn't have this primary relationship for that person. However, there may be someone who isn't in residence who has been in a relationship for a period of time that isn't as long as some might think who is, and these people are of primary importance.
I give the example of a colleague of ours who died last year, who at a certain point during his illness looked like he was going to die. He subsequently did not die at that point, and his partner did not live with him and they had not yet been in a relationship for a year. If he had been deemed mentally incompetent and required a substitute decision-maker and hadn't had that explicitly set out, this law would not take that into account, and in fact his family was removed geographically from where they were. It wasn't even practical for them to become substitute decision-makers.
Again, we would suggest that the relationship of primary importance to both people is the crucial idea in this section and that that is the case for gay and straight relationships. This needs to apply across the board.
The second point is regarding the issue of offence under section 9 or 16. The Health Care Consent Act doesn't provide for any remedy or penalty for failure to comply with this requirement. I'd like to point out that a person can be charged if they're acting on a person's behalf under sections 80 and 82, but the doctor cannot, and although the provision is available through civil procedures to seek damages, this is quite onerous. We believe to give this legislation some teeth in this respect, the following provisions should be added to the miscellaneous section of part VI of the Health Care Consent Act:
"A health care practitioner who contravenes sections 9 or 16 of the act is guilty of an offense and is liable, on conviction, to a fine not exceeding $10,000."
1450
The other two points relate to amendments to other statutes in part IV of Bill 19, the first relating to the Public Hospitals Act. For many people with HIV or AIDS, they have experienced discrimination in hospitals while receiving care. We feel that in the bill there should be an amendment which requires the Public Hospitals Act to have the effect of requiring all hospitals which are subject to the jurisdiction of the act to take all the necessary steps to implement all the policies and procedures that would be contained in this act and therefore have the effect of eliminating discrimination in the treatment and care of people with HIV and AIDS. As you can see, on page 8 of our brief under this section we have laid out our suggestion as to an amendment.
The second case is on that same page, at the bottom, regarding the Health Protection and Promotion Act. For a long time we have felt that there were some problems with this act with relation to the powers of a physician to treat someone in a case where the communicable disease is not treatable. For instance, in the case of HIV and AIDS, there is no known cure for the disease. So if the objective of the Health Protection and Promotion Act was to force someone -- to treat them so they're no longer communicable, that isn't possible. I think this is an opportunity for the legislation to amend this part of the Health Protection and Promotion Act so that consent still is needed for other kinds of treatments. We feel that this is quite important in terms of the rights of people to determine their own course of treatment.
I give the example in particular of a pregnant woman who it is deemed that she is giving birth to a child and that there's a risk of transmission to the foetus and a doctor would force her to take AZT, a course of therapy which is thought to reduce the risk of transmission to the foetus, but it's quite controversial both in terms of the health of the mother and in terms of the health of the child. Under the provisions of the act, unless it's amended in the way we suggest, a pregnant mother in such a situation would not be asked for consent.
We suggest that subsection 67(1) of Bill 19 be amended by adding to the end of the proposed clause 22(5.1)(b) of the Health Protection and Promotion Act the following:
"However, no health practitioner shall administer any treatment pursuant to an order under this section without first obtaining the consent of the person where such treatment will not render incommunicable the communicable disease or infectious agent which the order under this section is designed to address."
Mr Hastings: I guess my only question relates to your proposal of an additional civil remedy or penalty of $10,000 in the act. What does it really accomplish when they already have access through the courts for civil remedies if the courts themselves are already bogged down in many instances and you'd end up having to have the case heard in one of the courts? Where do you end up getting any greater level of satisfaction in the penalty, except you have somebody with a fine now that they're convicted?
Won't it also dissuade additional health care practitioners from wanting to treat AIDS? I understand you're trying to get more physicians involved. If you penalize them, why, if I were a doctor, I'd say, "Why should I bother?"
Ms Atkinson: I don't think that applies just to people with AIDS, though. This would be a protection for all people under the act. So I don't think that it would particularly dissuade people. It's not as though this penalty would apply only when they're treating people with AIDS. If they didn't get appropriate consent from any individual, then they could be subject to this kind of fine. It seems odd that in the act there's a fine available to individuals but not to the physician, who actually is an educated individual who knows, through the professional code of conduct, that that's what their behaviour should be.
Mr Ramsay: Thank you very much for your presentation. I think you've given us some food for thought here on some areas that I would certainly encourage our critic next week to bring forward some amendments to the bill on, specifically on research. I thought that was very interesting. Why shouldn't somebody be able through a power of attorney to agree some time down the road that procedures that have a research nature be utilized?
I'm glad you brought forward maybe better clarification of the definition of "partners." Many of us were sort of satisfied that what was in the bill might be adequate, but you've brought some good points about a partner may not be somebody who cohabits with the other person, so that's something maybe we should consider.
Also, the change you've suggested that would make it imperative, by actually amending the Public Hospitals Act, that hospitals respect this law and recognize relationships that maybe some hospitals don't recognize, while it's not directly to this act, that's maybe something we need to look at. When it comes to something as simple as visitation, I know some people are restricted. So thanks for bringing those points forward.
Mr Miller: Can I make a comment on that? In fact, with respect to the issue of a partner, there may be some concern by some of the members that there would be something onerous that was placed on doctors to determine who was the partner. In fact, in different parts of the act, that isn't the case. I think the doctors are allowed to determine this based on a number of means which you've already outlined in the act. We don't believe that this will be an onerous thing to do but that it does really get to the teeth of the matter. You know, what is a partner? A partnership is in a relationship of primary importance between two people. The other things are trappings which for some reason we define in our society, and they don't always work.
The second issue, with the Public Hospitals Act, as someone who's worked in the social services sector for several years -- I'm currently the executive director at Trinity Hospice, where we take care of people who are terminally ill -- I know that in terms of giving real credibility to ideas, you need to implement policies and procedures that have meaning within an institution. Otherwise, things don't happen, and that --
The Vice-Chair: Mr Miller, I'm sorry, I have to cut you off there. We have to move quickly to the NDP caucus for one question.
Mrs Boyd: Thank you for your presentation. I am very struck by your offence clause and I think you ask a very good question, why substitute decision-makers would be subjected to an offence clause and physicians wouldn't. I think it's a very good question that you ask.
I certainly would support your comments around the definition of "partner," while reminding you that if that definition doesn't change, then the obligation for the AIDS network is education around making sure that people have powers of attorney that actually take care of that and that's one of the other things.
I would say in relation to your issue around research, that opens the door in a way that frankly would be very, very unacceptable to most of the people who have come in front of this committee. Treatment for the purpose of research is one of the issues, particularly for psychiatric survivors, that's a very, very serious issue. So I think here again if in your personal care power of attorney you specify, given the nature of your condition, that you agree to experimental treatment, you agree to new drugs, and you give it as a continuing power of attorney to deal with the changed circumstances, that helps you. The changed circumstances that you're talking about are knowledge that the physician has that he hasn't shared with the patient. That happens a lot, and I think you make a very good point.
Ms Atkinson: When we talk about research or experimental procedures, we are limiting that to powers of attorney for personal care. We're not suggesting that all substitute decision-makers could consent to it.
1500
Mrs Boyd: But that personal care for people who have developmental handicaps, people who have psychiatric handicaps, would also be covered. It would not be acceptable to them, and I really don't think that we, however sympathetic we are to your point of view, could ever recommend an amendment like that.
Ms Atkinson: I'm just saying the amendment we would like is that persons could indicate in their power of attorney that they would like to have that provision, so it wouldn't be a blanket provision for all vulnerable adults.
Mrs Boyd: I don't think you even need to do that, because we believe the power of attorney allows that.
The Vice-Chair: I'm sorry, I'm going to have to stop you there. We are out of time. I apologize for that. Thank you for your presentation.
INTERNATIONAL ASSOCIATION FOR THE RIGHT TO EFFECTIVE TREATMENT
The Vice-Chair: The next presentation will be made by Dr Andrew Dalrymple from the International Association for the Right to Effective Treatment.
Dr Andrew Dalrymple: Thank you, Mr Chairman and honourable members of the standing, or should I say sitting, committee. I hope to leave lots of time for questions.
I'd like to point out, in direct contradistinction to the presentation made by Jennifer Chambers previously, that most of human behaviour is predicated on the basis of punishment or negative reinforcement, as anybody who's ever received a parking ticket outside this august chamber would know. It's a very effective and long-term way to ensure that you don't violate society's precepts.
This list of names on this form provided to you, who are the founding members of the International Association for the Right to Effective Treatment, consists of major editors of the major journals in terms of learning theory. Names such as B.F. Skinner may be familiar to you. Others such as Ivar Lovaas, who's developed the primary effective treatment for children with autism, and a number of other luminaries in the field of learning theory, would also support my contention that punishment is one of the prime ways we acquire knowledge and how we acquire conscience. Those who say this is not the case are sorely misguided.
I'm getting away from the text, but the text takes about five minutes to read, so I'll get back to it. Who here thinks that their paycheque is a reinforcer for work behaviour? Is it your paycheque that gets you out here to work every day? Is that what the contingency is? No, it's not. The contingency that brings you to work every day is that your paycheque establishes a certain standard of living that you're used to, and the threat of loss of that standard of living is what keeps you coming into work each day, as opposed to your paycheque reinforcing the particular kinds of behaviours that you exhibit. So it's threat of loss or negative reinforcement that we're talking about here, not positive primary reinforcement, and that's Fred Skinner's particular argument that I've always agreed with. B.F. Skinner is the founding father of the principles that I espouse today.
My name is Andrew Dalrymple, as I've said. I'm a certified psychologist and the chair of the Ontario chapter of this organization that lists these people. I wanted to get the philosophy statement exactly right, so I'd like to read it into the record. This is the considered opinion of this group of individuals:
"We view the right to the most effective treatment available to be the ultimate human right of each disabled individual. Technology exists now to help persons with physical handicaps, sensory impairments and behavioural excesses and deficits to achieve the highest potential quality of life. IARET is an educational and advocacy group established to ensure that all individuals with disabilities which manifest themselves in behaviour patterns that are highly unsocial, non-functional or potentially destructive, benefit from the most progressive, effective interventions available.
"It is our explicit mission to accept only those procedures with empirically verifiable, reliably repeated effects, and to make them available to all individuals with disabilities. Cosmetic attractiveness is not an acceptable substitute for demonstrable clinical effectiveness. We must therefore work towards educating the public as to what constitutes effective and acceptable treatment." Most of them consider that primary reinforcement is the primary treatment modality; there's no doubt about that, but in a very small percentage of cases it is necessary to use punitive techniques. "It is our belief that the least restrictive, effective treatment should always be employed, and that reinforcement and training aimed at teaching alternative and more socially appropriate behaviours should always be the primary focus of treatment. In cases in which a potentially intrusive intervention is to be used, we believe that the intervention should only be implemented after appropriate consent has been obtained from the individual, guardians or (if required by law) a court."
You'll have to excuse my shaking. I happen to have a disability. It's a neurological condition known as Parkinson's disease. So if I'm unclear, please let me know.
"The tolerance of non-treatment, mistreatment, inappropriate or inadequate treatment of severely impaired individuals violates the precepts of, and cannot be acceptable to, a highly developed, enlightened society. Our objective and obligation must be to provide effective treatment. This means a procedure, or combination of procedures, which most efficiently produces the greatest magnitude of change. This change should be in a direction which allows the individual to function most adaptively in the greatest number of situations, and which benefits the individual most over the course of their lifetime. For some persons the right to effective treatment is tantamount to the `right to life'; for all persons it is the `right to a better life.'"
IARET's membership consists of some 300 individuals and it covers 13 states. We only have one provincial chair and I happen to be that chair. We do have members from Nova Scotia, Quebec, Ontario, Manitoba and New Brunswick, most of whom are professionals engaged in the treatment of individuals with developmental disabilities and frequently with pervasive developmental disabilities: autism, severely disturbed-type children and serious behaviour disorders.
I am presenting this brief in strong support of Bill 19, in particular the provision within the bill which allows substitute consent for the application of aversive stimulation as part of a treatment package where individuals cannot consent for themselves.
Previously under Bill 109 and Bill 108, such consent could not be given except by the individuals themselves, and this resulted in a discriminatory, unequal availability of effective treatment. It is demonstrated that this is indeed effective and humane treatment -- I want to emphasize that -- effective treatment denied to developmentally disabled individuals. This lack of access to treatment has and will result in life-threatening situations for the few severely disturbed developmentally disabled individuals who need this treatment. The new provisions in Bill 19 that allow for parents to consent for such necessary treatment are both humane and logical responses to the treatment needs of these very disturbed few. There probably would be only a couple of cases, two or three in Ontario, where such treatment might be warranted.
Advocates for non-aversive therapy will claim that this is demeaning and unnecessary and that we can treat all severe behaviour problems with positive treatment alternatives. They have never been able to prove this argument in either its generic form or in terms of the specifics of the case of Brian Singer.
My experience in the system -- I've been working for 15 years now with these kinds of children and it's extensive -- the literature and the group homes in the province of Ontario, my experience with those as well, is that there are many treatment failures masquerading as success. Often because people are not qualified and are unable to access qualified psychological support, people with severely injurious behaviours are left in chronic, four-point restraints or under extreme chemical sedation rather than attempting to liberate them by means of controlled application of aversives.
The specific example of Brian Singer shows how less than a total of a few minutes of faradic stimulation -- shock, if you will -- can result in massive positive changes in his quality of life, a quality of life that would otherwise be restricted to the gentle, mothering arms of a straitjacket. There is no ethical dilemma here. I do not feel that we have dehumanized, derogated or humiliated Brian in the least. Rather, he has been provided a safe, humane, appropriate treatment.
I support the need for close monitoring and ethical review of the treatment course provided to such individuals. I have complete faith in the parents of these children, as part of a treatment team, to decide and monitor treatment effects, side-effects and unintended effects. These parents are also expected to, and should participate in, due process review and examination of their child's status at regular intervals.
1510
The proponents of non-aversive alternatives might imply that allowing one child to be treated in this fashion is the slippery slope or the foot in the door that would allow for many more children to be treated this way. I've had some input into the stringent standards laid out in Ontario, and some commentary through my other role as the chairman of the Ontario association on developmental disabilities, a professional organization. I'm no longer chair of that organization, but my past experience with the standards and restrictions of this therapy to specific sites, one site in particular now, is sufficient to ensure that this does not happen. This does not mean that those children who are treated cannot be monitored in the community by suitable safeguards in some institutional structure.
I am more concerned that there are many individuals living in the community who are not receiving proper or effective treatment because of the chill that previous legislation and previous misguided advocacy efforts has had upon the treatment community. Ideology should not drive the treatment process any more than religious concepts of good or evil should drive the justice system. Evidence, evaluation, experimentation, replication, generalization and observation should form the basis for each treatment we accept. Ideology alone results in injustice.
The provisions in Bill 19 that allow for parents to consent for shock treatment of their incapable children must stand. They will save at least one life.
Mr Ramsay: Doctor, thank you very much for your submission today. Elinor Caplan, the critic in this area, and I will be looking through that this week in anticipation of moving amendments in clause-by-clause.
Mrs Boyd: Thank you for coming, Dr Dalrymple. I assure you that in no way was your communication affected. You're a passionate defender of the procedure you're here to talk about.
You can appreciate that we've spent the last three weeks listening to people talking about treatments that were defended just as passionately, by psychiatrists in particular and psychologists in years past, treatments like insulin therapy or electroshock therapy in psychiatric institutions. I hope you appreciate that we have a certain lack of acceptance necessarily of what one says is the only treatment available and is saving hundreds of lives. We've heard that before about treatments.
I think we need from you a little understanding that this isn't strictly an ideological position around this particular treatment. It is based on a good deal of concern -- I have to assume they are errors meant in good faith -- around treatment before and that objections to that kind of treatment have been greeted with exactly as much horror as you are meeting with the objections to this particular treatment. I think that's something that ought to be at least recognized.
You say in your brief that you think there need to be all these controls on this kind of treatment, and I'm glad to hear that. If it were to be permitted, it would need controls. There are no controls in Bill 19. It could be done anywhere, anytime and agreed to by any parent. There is nothing in this legislation that guarantees people that there are going to be any controls. At the very least, I can assure you, we would be wanting to bring forward amendments that would clearly control this, because otherwise there's a whole population out there that is very fearful and very angry that this might be allowed. We have heard very passionate views on the other side.
You say here that there ought to be legal provisions for guardians and/or the courts to approve. I would suggest to you that if it is as rare as you seem to be saying -- you seem to be saying it's rare --
Dr Dalrymple: It is.
Mrs Boyd: -- but then in your last paragraphs you say there are lots of people in the community who could be helped by this. I run into real problems, because we've heard this from other people.
Dr Dalrymple: The distinction that needs to be drawn there is between the banning of all aversive procedures as opposed to the single therapy I'm trying to consider here, which is the use of aversive electric shock.
Mrs Boyd: But there's no question of a banning --
Dr Dalrymple: Electric shock would only be considered in a very tiny percentage of cases.
Mrs Boyd: So you think it would be reasonable for one of the provisions to be that there needs to be an application to the court and an agreement by the court that it is the last resort. Would you agree that there need to be some guidelines in there about the circumstances under which it could be done?
One of the presenters here seemed to admit quite freely that it would be quite probable that he would agree to do it in his office, if it were allowed. That really gave us a lot of concern. Do you agree that we need to build some protections in here if it is going to be allowed?
Dr Dalrymple: If you look at the situation at Cedar Springs, Pancho Barrera's program, there are sufficient controls and review processes available in that institution to ensure that there is no abuse of this particular therapy.
Mrs Boyd: That's true, but they were only won through very hard advocacy work on behalf of those who disagreed with the treatment.
Dr Dalrymple: And on behalf of those who agreed with the treatment, such as myself, who also recommended those particular controls. I wouldn't characterize the controls placed upon this as being won by the advocates of positive therapy only. We also want stringent oversight of these procedures as a responsible therapist.
Mrs Boyd: So you do think that Bill 19 ought not to just give a blanket approval of this but should indicate that there are conditions under which it might be appropriate for a substitute decision-maker to make that decision?
Dr Dalrymple: I think there are sufficient oversight mechanisms available at Cedar Springs to allow for the provision of --
Mrs Boyd: You're not understanding me. There is nothing in this legislation that restricts this to Cedar Springs. We have had people in front of us saying that they want parents to be able to make that decision and to offer this treatment in their office.
Dr Dalrymple: But I think they should be hooked in with the oversight structures of the institutional system.
Mrs Boyd: I agree with you.
Mrs Johns: You'll appreciate that this is a controversial issue. I have a number of questions I want to ask you, so if you could give me the facts and we can move forward on each of them, I would really appreciate that.
First of all, I want to comment that I'm interested in checking Hansard from that gentleman. I'm unsure about whether he was talking about consenting capable adults or incapable children with parents who were consenting for them. The Hansard isn't out yet. Mrs Boyd and I may well disagree about how we heard it. I'd want to check that first, then we'll come back to that and I may have some other questions I'll have to ask --
Dr Dalrymple: I wasn't here, so I don't know.
Mrs Johns: I need to know, to fill out my education on this, the difference between what treatment is with respect to what's happening with Brian Singer, for example, versus what research is. What's happening to Brian? Is that a treatment? Is that research? What's the process? Tell me about that.
Dr Dalrymple: I suggest that what's happening with Brian Singer is treatment, that what we have is an already established therapeutic modality that's being applied in known ways with predictable results and is being monitored for side-effects and other unintended effects. We're not operating in a void here. There is a whole body of research which actually demonstrates that these procedures are effective for a certain small number of individuals.
1520
Mrs Johns: How is the treatment controlled? How do we know that this isn't a horrible treatment that isn't helping Brian in any way? And how did he evolve to get to this process, that you know this is the only treatment that will help him?
Dr Dalrymple: I think Brian had been run through the mill in terms of the alternative therapies, many of which are entirely discredited, such as gentle teaching and so on and so forth. There were many positive efforts made in Brian's history to reinforce, shape and change behaviours, most of which failed. This was indeed one of a series of very many placements; he'd finally come to the point where there was consideration that this should be attempted, and in fact in turned out that it was very effective for this individual, and it was attempted under strict controls.
Mrs Johns: There is some talk that there were four, five, six people on this treatment when it was changed under the previous government and that only one has had to come back to that. Can you talk about that process? Was that not the right process for the other five people or what has happened to those other five?
Dr Dalrymple: I can't comment specifically on other cases in the system. Some may still require this particular therapy to achieve pre-treatment levels of independence and functioning that they'd achieved previously. It is also possible that, with additional efforts, some alternatives have been found for these individuals. But I'm not in possession of all the facts, so I can't really comment on those cases.
Mrs Johns: I need to ask you a question about your last page. I circled the same thing Mrs Boyd did. You start the paragraph by saying, "I am more concerned that there are many individuals living in the community who are not receiving proper nor effective treatment because of the chill that the previous legislation" put into effect. Are you saying lots of people would be on faradaic stimulation if you had your -- if we took this away?
Dr Dalrymple: If I had my way? No.
Mrs Johns: Well, if anybody has their way. We need to know that.
Dr Dalrymple: There are a number of people who are not receiving treatments which might be minimally aversive, such as time out or other forms of aversive --
Mrs Johns: Time out is like when I put my kid in the corner and say, "You have a time out"?
Dr Dalrymple: That's correct, that kind of thing. They don't have structured therapeutic programs, well-designed programs. All these programs should include a strong positive base of training and reinforcement. Nobody is saying that you use just an aversive in and of itself. What you need are well-structured behavioural interventions or packages of treatment that might at certain points in time include an aversive component, perhaps a removal of a previously granted reward or a time out from an enjoyable situation if behaviour so warrants.
But what I am saying is there's been a survey of individuals who are duly diagnosed across this province. I haven't seen it released yet, but I hear there is a number of people who are actually -- I think the previous government commissioned the survey and it hasn't been released. Are you aware of this survey?
Mrs Boyd: No.
The Vice-Chair: I'm sorry. We are going to have to stop you there. We've run out of time.
Dr Dalrymple: There do seem to be many instances of individuals who are not receiving suitable treatment in group homes. Thank you.
Mrs Johns: So the 100 are just people who would require some punitive --
Dr Dalrymple: No, some structured behavioural intervention, not necessarily punitive.
The Vice-Chair: Doctor, on behalf of the committee, thank you for your presentation.
CITY OF TORONTO COMMITTEE ON THE STATUS OF WOMEN
The Vice-Chair: The next presentation will be Audrey Swail, the City of Toronto Committee on the Status of Women, employment equity division. Please identify yourself for Hansard, and you've got 30 minutes for your presentation.
Ms Audrey Swail: Hello. I thank you for this opportunity for us to come today and present our response to Bill 19. I am Audrey Swail, and I represent the Committee on the Status of Women for the city of Toronto. With me is Jane Koster, who is also a long-term member of this committee. I believe you have our brief; I will be referring to that through most of my presentation.
The City of Toronto Committee on the Status of Women is a permanent committee of Toronto city council, and we report to council through the Neighbourhoods committee. We were established in 1991, and the committee consists of 15 volunteer members from the community, three members of council and the mayor. We're non-partisan and we represent the full range of political views, but we certainly come together on the view that we promote the equality and the quality of life for women in Ontario and the city of Toronto.
I'll begin by referring to a question you might be asking, that is, why is advocacy a women's issue? It may not be immediately clear. We work from the basis that we value the framing of issues and power and vulnerability, and we root our work from a social justice perspective. That means we strive for a fairer and more just world for women, and also for men and children.
We want to speak to you today because we're alarmed by this government in some of the approaches it's taking, particularly in this bill. A large number of vulnerable people -- people with moderate to severe disability and those who are frail and elderly -- a disproportionately high number of these people are women, for a variety of reasons. One of the reasons is that women live longer, and I think most of us know the demographic statistic there, but there are other reasons. Women are much more likely to be in positions of financial stress or poverty, particularly disabled women but also women who are elderly and frail, for a number of reasons that you've probably heard from status of women councils and advisory groups in the past; that is, that discrimination in the workplace is one of the reasons why, over time, women are not as able to prepare for a secure older age.
As to women with disabilities, I remember at one point in the early 1980s when I went to a conference sponsored by DAWN, the Disabled Women's Network, an advocacy group for disabled women which I understand has just had to close its doors. That group at that time held a conference on all the issues facing disabled women, but the shock to me, because I thought I really was very much up on these issues, was that women with disabilities are at least twice as likely to have experienced sexual and physical abuse in their care. That's quite shocking.
A large number of people considered vulnerable also have psychiatric histories. Women are also overrepresented in this system, and the number of people experiencing mental health problems is high for women. Violence against women is one of the factors that contributes to increased vulnerability. For example, many women have mental health difficulties directly resulting from violence and abuse that they have experienced earlier in their lives.
The high rate of women psychiatric survivors is particularly evident these days in the Toronto area, where as the result of the deinstitutionalization that started over a decade ago, many of these women find themselves out in the community with little or no support, and increasingly homeless.
I'd like to talk now about the need for independent rights advice. By the way, I'll be primarily addressing the Advocacy Act, the impact of the repeal of the Advocacy Act. I will not be taking a legal and professional perspective; those were very well done by the Advocacy Centre for the Elderly and the Ontario Association of Professional Social Workers and other groups that addressed these in great detail, and we support many of their recommendations. I'm going to really focus on advocacy.
With respect to rights advice, the majority of the Advocacy Commission's rights advice, 78%, is under the Mental Health Act. I guess that is really still there, primarily for people who are being made involuntary patients, and these are people who, for a short time, can be held without their approval. Once again, as women are overrepresented in the psychiatric system, the Committee on the Status of Women is concerned about the new proposals regarding rights advice, as a social justice issue broadly and also as an issue affecting women in particular.
1530
We're concerned that as a result of the proposals in Bill 19, rights advice will not be mandatory and will not be independent. Those are the two factors that we think are essential that we will be missing if Bill 19 goes forward as it is. We're concerned about that. Having staff of the public guardian and trustee and health providers giving rights advice is a conflict of interest. We don't believe that is neutral enough and unbiased enough.
We're also concerned about that the question of how rights advice will be provided under the Mental Health Act has not really been addressed. When the Advocacy Act is repealed -- there's no reference to this. Currently, it's provided in the 10 provincially operated psychiatric hospitals by staff of the Psychiatric Patient Advocate Office; the PPAO provides this now. There's no reference to how people will get this help outside of the PPAO. We would like the government to address that.
We certainly support independent rights advice being provided, and that could be done without huge expense, we feel, by utilizing the non-profit community sector. We understand that this bill was criticized because it was perceived as being overly bureaucratic and costly. We're asking, instead of repealing the bill, why not make amendments that would take out those elements of greatest concern? Rather than completely repeal the bill, it could possibly be amended or something could be put in its place.
I would like to move on now to the need for advocacy services for vulnerable people. It's our firm belief, based on our experience in the community, that there is a tremendous need for advocacy services in the province, and you're probably hearing that from many, many groups. It's estimated that there are 300,000 vulnerable people; there probably are more. Vulnerable people are simply not able to exercise the rights that many of us take for granted. We go around every day with a sense of our inalienable rights. They are intrinsic, and we make decisions on our own behalf. But any one of us within a moment's notice could suddenly be put in a position where we would be extremely vulnerable, and all of a sudden those rights would be questioned and we would not be so assured of them. Maybe then we could understand what it feels like.
Many vulnerable people are often afraid to exercise their rights even if they know these rights. They may not even know that they have a right in some cases, and if they do they are afraid of exercising rights. People feel somewhat powerless when their everyday care, or even aspects of that care, is dependent on other people. Even when those are loving family members, there is some fear of questioning decisions that might be made on their own behalf. In the brief, we have given you a quote from a psychiatric survivor as she sees this, and I would appreciate that you look over that.
Another aspect is that vulnerable people may come to accept abuse and neglect as a natural price for the help they are receiving: food, shelter, physical care. Society has a responsibility not only to protect these people, but also, to live up to their potential, vulnerable people must be able to know what their potential is and get that help when they need it.
Advocacy services are not about telling vulnerable people what to do or even telling the caregivers what to do. Very often advocates go out and talk and mediate and help resolve a dispute or a difference of opinion rather than always telling people what to do. It isn't a matter of intruding so much as protecting and being sensitive. Much of the work of advocate advisers has been to educate. In talking to people from my profession, social work, people were telling me they gained a great deal from having the advocacy office there, with people coming out and actually improving the communication between them and the people they were helping.
The need for advocacy services in this province was acknowledged by all parties, Conservative, Liberal and NDP. These issues came up in the early 1980s, as I was saying earlier; I was a policy adviser in the early 1980s in the provincial government, and we were addressing some of these issues then. A plan describing the need for advocacy and the way in which it could be carried out was presented to the government in 1987. In fact, there were three different government documents at that time, one of them being Father Sean O'Sullivan's report, You've Got a Friend. That report was written to address the tragic deaths of vulnerable people and issues raised in subsequent coroner's inquests, and there were some quite shocking incidents at that time.
None of those societal problems has completely gone away. Many of them are still with us; some are worse. The report identified the poverty, lack of housing, lack of services, abuse and neglect faced by vulnerable people, and these are still there, probably more so. As I mentioned earlier, a program like DAWN, just an excellent community advocacy group for disabled, has closed its doors, and I haven't had the opportunity to call around and find out how many other support services are either on the brink of being closed or are struggling, or whatever's happening to them. If anything, the issues identified in that report have worsened today.
We would like to comment on the myth that vulnerable people can simply rely on family support. We're not bashing families. We do say, though, that many people, families and caregivers, are practically saints, give a great deal of themselves, but unfortunately this is not always the case. We wish to point out that the notion of families being composed always of loving, caring people who support and comfort vulnerable family members is a problem. In the last 15 years, we have begun to recognize the level of violence against women right in their home. Many of us have come to realize that for many women and children, the home can be a dangerous place. This has been shown by reports of the prevalence of elder abuse and violence against people with disabilities.
When we say we want to depend on the family, want to trust the family, I think that should be the first order, but I would remind us that families are under tremendous stress these days, scattered geographically, under financial stress, and that the people who are taking care, either directly in their home or those living in other homes, in institutions or in more sheltered areas -- most people around this table, possibly, are having some stress with the care of people in our families who have some form of disability or are frail elderly. The stresses are enormous and getting greater, and the families need support and help.
When the Advocacy Act was passed by the previous government, many people, particularly those who had long been calling for change, hoped this would make a difference. It made some difference, possibly. It wasn't perfect, but we really didn't get much chance to find out to what extent it was going to resolve some of the problems. We'll never really know that, as it's being repealed.
What we would like to see: I understand that back in July, the government said that while there would be a repeal of this act, there was a continuing support for advocacy and the role of government in advocacy and the need for advocacy. More recently, but just very recently, I understand there are consultations going on with families and people in the community and professionals, caregivers, around what might be done around the advocacy issue. It's good that that's happening, but it seems to be a little late. If this was thought in July, why would this not be part of the Bill 19 package?
1540
Something in Bill 19 should be alluding to the fact that if we're not keeping the Advocacy Act, if we're not making amendments, we're not creating new statutes, at the very minimum there should be some reference to how advocacy will be a continuing responsibility for this government. Somehow, there should be something statutory or regulatory that refers to that.
I'll summarize what I think the city of Toronto Committee on the Status of Women is looking for from this committee, from this government.
(1) We want government to provide funding and some form of sanctions that ensure that a system of advocacy exists and is effective for the protection of all vulnerable people against abuse and neglect in this province.
(2) We want the government to provide some form of funding and support for systemic advocacy. That's a role where it's not just case by case and complaint by complaint, but looking at whole systems and seeing how they contribute to the unnecessary vulnerability of these people. We want to look at systems as well, so I ask that the government support systemic advocacy directed towards changing systems and attitudes that put vulnerable people at risk, possibly assigning this responsibility to the non-profit community sector, and providing training, education and the supervision of volunteer advocates.
(3) Ensure that the provision of rights advice to vulnerable people be unbiased and neutral so that there is no conflict of interest between vulnerable people and those empowered to make decisions about critical aspects of their lives.
I want to thank you for giving us this time to make our presentation, and I would now welcome your questions.
Mr Marchese: Thank you for your submission. Much of what you say has been said by many, but we appreciate that, because each one brings their own new experience relative to where they are and the kind of work they've done. In that regard, you emphasize the kind of need that people have been talking about.
Your comment around systemic work and systemic advocacy is something we agree with. If you don't deal with that, it's hit and miss; it's waiting for someone with a complaint and then finding someone who will deal with it. If we don't deal with systemic work, we've got a problem. That's why the commission was set up, in effect, to deal with systemic issues -- one of the reasons.
We hope the government members will listen to the fact that we need rights advisers, which you talk about, and that they should be independent. That's been a constant theme of many, many presenters.
Let me ask you some questions, because we hear different things from different people. Did you find that the Advocacy Act or rights advisers or the commission itself were, in your view and experience or from what you heard, intrusive, adversarial or bureaucratic in any way?
Ms Swail: I have to acknowledge that there were complaints. A lot of people said it was complicated and not always easily understood by the public. It's very important when we make laws that they can be very readily understood and interpreted and acted upon. One of the complaints I would hear is that people thought, rightly or wrongly, that people would be coming into their lives, into their homes, into their institutions and telling them what to do. In fact, there were all kinds of safeguards against that, but that was not the message people were getting, and I have to say there were complaints. I have to acknowledge that.
Mr Marchese: We appreciate that, and you said in response to that, "If you, government, have a problem with that, whatever complaints you may have heard, which may have been real, deal with them and propose something in its place," either in its entirety or something that deals with its particular parts, but keep the system intact because that's what people have asked for in the last 15 years that we've been hearing people's concerns.
You say two things. One is education. We've heard that as well. A lot of groups have said, "Before you put this out again" -- and this applies to all governments; we've all failed in this regard. Education needs to take place so people are properly informed.
I want to agree with one comment before the time runs out, that is, that the government really has a responsibility to tell us what it is they want to replace this Advocacy Act with, not to have us wait until sometime in the future for something that leaves us completely without anything in its place or without anything for people to comment on. Do you agree?
Ms Swail: I hope that is the message we've conveyed in our brief.
Mr Ed Doyle (Wentworth East): Thank you for your presentation. It was very thoughtful and well prepared. You paraphrased Father Sean O'Sullivan's You've Got a Friend, and I'd like to read from your brief.
"We agree with Father O'Sullivan's statement in You've Got a Friend `that primary responsibility for advocacy must remain with us as individual citizens, as families, as friends and as neighbours of Ontario's vulnerable population. Primary responsibility for advocacy education and the development and support of advocacy services is the proper role of government.' To that end, we support the recommendations of the Ontario Advocacy Commission with respect to further advocacy initiatives."
Basically, this is really why we're here, to see if we can implement these things in the way that is most effective and in a way that has meaning, perhaps in a way that is not quite so expensive because of the bureaucracies that have been building up in government today. I'm wondering if you can explain to us whether you have any ideas about what role the advocacy organization could take, because that's one of the things we're truly interested in seeing.
Ms Jane Koster: We don't have a problem with the use of volunteers as advocates -- absolutely. I think we all know that volunteers are very committed and capable of doing a really good job. But it's necessary for them to have effective training, and an advocate can only be effective if they know things about laws and regulations and all those kinds of things that vulnerable people get caught up in. That's why it's necessary to have money to provide training for advocates on behalf of vulnerable people; also to do public education about attitudes towards people with disabilities and elderly people etc; and to conduct systemic advocacy. That's what we would see the money needing to be spent on: training, systemic advocacy and education.
Mr Doyle: Earlier in your brief, you mentioned the need for independent rights advice and expressed some concern about this. This is a question that of course has come up consistently throughout these hearings, the issue of who should be giving these rights. Would you feel that perhaps the health care providers should be -- for example, the College of Physicians and Surgeons. Do you think they should be placed in the position where they should be telling patients what their rights are?
Ms Koster: No. I think that's a conflict of interest, for the same person who is the service provider to also express your rights to you. No, we see that as a conflict of interest.
Mr Doyle: So you would prefer that that not be done by somebody in the medical profession even if safeguards were put in through, for example, the College of Physicians and Surgeons.
Ms Koster: I think the issue here has a lot to do with perception. Patients will be unlikely to say, after their rights have been explained to them by a health care professional, "Yes, I'd like to go to a review board hearing," because they're going to be afraid to do that. These are people who have power over them. In particular, doctors are held in a lot of esteem in our society and a lot of people are afraid of questioning doctors.
1550
The Chair: Thank you, Mr Doyle. Mr Ramsay? Actually, Mr Brown. Sorry.
Mr Michael Brown: We all look alike. Thank you, Mr Chair -- I think.
I appreciate your presentation. As I went through, the first thing that struck me was that I hadn't seen the number 300,000 before. Maybe it's been there, but I haven't seen it. One of the things that strikes me about all this legislation that causes all of us some problems is that 300,000 in this province is a relatively small number, but each of us can be touched by that. Either we ourselves will become vulnerable or some friend or family member will. That experience will probably touch us all.
I'm interested in pursuing the area of education, how you educate a population about these issues. We had some suggestions yesterday from some people about how that might be done. How would you see that happening?
Ms Swail: We talk about respite support for people looking after very sick people. For people who are looking after others, particularly if those people are very dependent, it can be a very stressful situation and they need those supports and help. They also can get education and training in how to deal effectively, how to maximize the autonomy of the person they're helping, without making it unmanageable. I think the training can be done by professionals for professionals, but it can also be wider than that and deal with families as well, helping families and general caregivers understand that just because somebody has a physical disability in one area, it doesn't mean they're totally disabled, or if they are, that they're not able to mentally handle making decisions. They still need some way of feeling some autonomy and some self-respect.
Ms Koster: Our society for a long time had a very paternalistic attitude towards people with disabilities and towards frail elderly people. That's one of the things we need to work to raise people's consciousness about and to move towards seeing people with disabilities as people who for the most part can have autonomy and should be treated with the respect everyone deserves.
In terms of the 300,000 vulnerable people, we should point out that that statistic represents people who have a severe to moderate disability, have difficulty expressing their wishes, making their rights known. This is not the figure for all people with disabilities in the province. This specifically takes up very vulnerable people, primarily people with developmental disabilities, head injuries and psychiatric disabilities.
Mr Michael Brown: From my own experience, many people who become vulnerable -- I'm thinking probably of the aged or people with a progressive disease. It's very difficult in your own family to understand when the lines get crossed, when competency is a question and when it isn't. How do you educate the broad population about those kinds of issues and what rights the vulnerable person has in that situation? Do you have any suggestions along those lines? After all, the government tells us they're interested.
Ms Swail: I think it takes consulting with a wide a range of people and coming up with guidelines that are flexible enough to relate to a wide range of people -- simply some standards. I saw there were some definitions added around people who were not competent to make decisions. I read that and thought, "Some days, that could be me." It depends on whether we're talking about how to make my VCR work versus everyday decisions. There are times when I might feel I'm not competent to make decisions.
There needs to be great care taken. There has been a lot of work in this area which I would want us to build on and not spend money redoing. We can learn from some of the reports of the past. And I think consultation is very important. The government is now getting into consultation. My question is, why now, and why wasn't that happening long enough ago so that as this bill goes forward, the issue of advocacy would have been adequately addressed?
The Chair: Thank you both very much for your presentation today.
TORONTO PEOPLE WITH AIDS FOUNDATION
The Chair: Our next submission is from the Toronto People with AIDS Foundation. Welcome.
Mr Eric Andrew Dow: I'm Eric Andrew Dow, the executive director of the Toronto People with AIDS Foundation.
Ms Tracy Ribble: I'm Tracy Ribble, and I'm an employee from the Toronto People With AIDS Foundation and Positive Youth Outreach and PASAN.
Mr Dow: The Toronto People With AIDS Foundation is the largest direct-service, consumer-driven AIDS organization in Ontario. We advocate on behalf of over 10,000 men, women and children living with HIV and AIDS. We provide direct services to over 4,000 clients who have become unable to work due to health concerns.
Before we begin discussing Bill 19, we want to take a brief moment in this presentation to brief this committee on the negative effects thus far with the passing of Bill 26.
An average client of the Toronto People With AIDS Foundation is an individual who has become impoverished due to HIV illness. Because governments allow insurance companies to discriminate against people living with HIV and AIDS, these individuals do not always have access to private insurance. These individuals rely on the Ontario drug benefit plan for basic medications. These medications are limited in helping to maintain health at current levels.
Bill 26 has allowed the introduction of copayments. We refer to these copyaments as taxes on the poor. An understanding of these copayments in action shows how this tax on the poor, the disabled and the vulnerable can be devastating.
An average client of the Toronto People With AIDS Foundation requires the use of at least four medications per month. Each prescription costs our clients a tax of $2, or $8 per month. The Ontario drug benefit program allows for prescriptions to be filled on a monthly basis only. If the medication needs to be taken long-term, the individual must pay this tax each and every month. With 4,000 clients who are impoverished, this tax costs our impoverished clients $32,000 per month, or $384,000 per year.
We present this example to you so that you may understand the realities of living with HIV and AIDS in Ontario today. We hope you will listen to the concerns these presentations bring to your attention. We hope you will adjust and amend the legislative changes you propose and take into consideration the concerns of the public, of vulnerable communities and of individuals and people living with HIV and AIDS.
With Bill 26 you asked Ontarians for a blank cheque. You asked us to trust the government. Your promised that your intentions were honourable. In clause-by-clause considerations, government responses asked for power without explanation of why these powers were needed or how these powers would be implemented. I tell you that the intentions and realities have diverged.
With Bill 19 you are asking for a blank death certificate. I am not willing to give you the opportunity to write my name nor the names of our members, people living with HIV and AIDS, on this death certificate.
Our concerns with Bill 19 are many. We have concerns with definitions and changes to definitions. We have concerns with the lack of basic rights for vulnerable people.
The concerns we have time to address in our limited presentation will concentrate on the three following issues: (1) the need for individual and systemic advocacy; (2) the right an individual has to be informed of a determination of incapacity and the process for appeal; (3) the need for a true consultation process with front-line workers and elected representatives of vulnerable populations.
I'm really not nervous. I have PCP, so it makes it difficult to breathe.
We support the October 1995 principles of the Ontario Advocacy Coalition. In particular, we support the points:
(1) The advocacy system must be governed by representatives of the vulnerable people it is designed to serve.
(2) The advocacy system should set a high priority on the identification and development of the potential of the community to create and conduct its own advocacy initiatives.
(3) Advocates must respect and promote the capacity of individuals and groups to help themselves, including the capacity to engage in self-advocacy.
(4) Advocates must, with the consent of the vulnerable person, be able to see records kept about that person that may reveal important facts about the person's situation. This authority carries with it a corresponding duty of confidentiality.
(5) Advocates should themselves, to a very significant extent, be drawn from the ranks of those who have personal experience of vulnerability.
1600
At the Toronto People with AIDS Foundation, 75% of our staff and our board of directors are people living with HIV and AIDS. We have certain positions, such as the executive director, that are designated for people living with HIV and AIDS.
The word "advocate" has been removed as a definition; the word "advocate" will no longer appear in the act. Bill 19 does not legislate the role for an advocate in advising a person who is to be deprived of his or her rights for self-determination. This change is not acceptable from the viewpoint of the foundation.
The Toronto People with AIDS Foundation has been involved and continues to be involved in issues of individual and systemic advocacy. As a truly consumer-driven, peer advocacy group, we have found a great deal of success in issues of individual advocacy. Where we need support from the government is in the area of systemic advocacy. A central advocacy office which can funnel systemic advocacy issues is key to the success of systemic advocacy. The proposal brought to your attention addressing changes to the Advocacy Commission is a step in the right direction. A central contact can collect information on individual advocacy and identify trends where systemic advocacy can make real changes in the system.
Around issues of capacity, we understand that the requirement for the assessor to explain the process and acquire agreement for an assessment can be found in part IV of the Substitute Decisions Act. However, with this understanding, we have concerns that thus far the government response to questions around this issue suggests that this requirement is not clear. Clarification of this issue is recommended. Further, a debate seems to be continuing with regard to appropriate notification of a finding of incapacity.
We ask this question of the government: If an assessor is required to explain the process and acquire agreement for assessment of capacity, why are the findings of this assessment not also required? If the individual understands the process of determination and agrees to the assessment, that same individual has the right to be informed of the results of the assessment. There is no question that notification of incapacity is a fundamental right of the individual being determined incapable.
Further to notification of incapacity, rights advice must follow. An individual must be guaranteed their right to access to appeal. Without these fundamental rights, consent to assessment must be discouraged. Assessments may become non-existent. The issue of capacity will become a moot point.
Consultations: As we appreciate the opportunity to address this committee, we wonder why we were not consulted before the legislation was drafted. As with Bill 26, Bill 19 has been brought forward without the input of many individuals, communities and advocates of the vulnerable. We are the people who are directly affected by these changes. We should be part of a process for their development.
The appearance given to some of us in the disabled community is that you are not interested in our issues. As a government, your actions are quick, but are they true? As a government, you seem to believe that cost-effectiveness means cost cutting. This is not our experience.
Over the years, many individuals living with HIV and AIDS have worked with different governments to ensure the protection of the vulnerable people living with HIV and AIDS. Some of these individuals who are no longer with us include David Kendall, Gary Thorton, James Thatcher and Brian Farlinger.
With the changes you propose in Bill 19, you are asking for more than a blank cheque; you are asking for a blank death certificate. I hope that in five years another advocate needs to present before a similar committee because my name has been added to the list of advocates who weren't heard and my name appears on the death certificate you ask me to entrust to you.
We also have concerns about definitions, but we wanted to open it up to questions a lot faster than other groups have been able to do.
Mr Parker: Mr Chairman, I'm looking for the provisions that respond to one of the points that was made.
Mr Hastings: While Mr Parker is waiting to ask his question, I'm wondering whether I could get some comment on your relationship with the other group that deals with AIDS in the city of Toronto or within Metro.
Mr Dow: Which one?
The Chair: AIDS Action Now, I believe.
Mr Hastings: AIDS Action Now. Do you work with them in a collaborative way?
Mr Dow: It depends on what the issue is. Because the issue is closer and their resources are such that they can deal with the issue better, different organizations talk about that among themselves. So we have talked with AIDS Action Now. We also talked with the HIV and AIDS Legal Clinic Ontario and we talked to a few disability groups before we did our presentation. So, yes.
Mr Hastings: You have a fundamental difference in philosophy and outlook in terms of advocacy compared to their presentation, which I have an impression -- probably incorrect -- is somewhat more legalistic, whereas yours seems to be more humanistically oriented. I hope I'm not being unfair here.
Mr Dow: No, no. The issues the foundation tends to take on are more human rights issues, because we have more anecdotal evidence -- we have 4,000 clients -- whereas AIDS Action Now's participation tends to be more on the legal side because they have more lawyers involved within their organization. But there's a lot of cross between the different AIDS organizations. Louise Binder, who is the chair of Voices for Positive Women, is the co-chair of the Community Research Initiative of Toronto. She sits on our board of directors and she's also with the AIDS Action Now treatment committee.
Mr Parker: I found the sections I was looking for. In your paper you ask the question, "If an assessor is required to explain the process and acquire agreement for an assessment of capacity, why are the findings of this assessment not also required?" Well, they are. That is in subsection 78(4) of the amended Substitute Decisions Act, page 31 of Bill 19.
Mr Dow: Right. We can't afford to actually buy the bill, just to let you know.
Mr Parker: I just wanted to give you some comfort on that point. The question you asked is unfounded because the presumption underlying it is not accurate. If there is an assessment, there is a requirement that the results of the assessment be revealed to the person in question.
Mr Dow: I think what we're trying to get across with that point is that we haven't gone detail by detail, because I'm not a lawyer, but what we do is we watch what's going on here. We have seen that argument over and over, whether or not the person who's being assessed as incapable has the right to be notified of their incapacity, and at times the government side has said no, that they do not have that right. So we want to be very clear that they do have that right, especially if they have the right to decide whether or not they're going to go through that process, they do have the right to be notified that they are incapable. But that hasn't always been the response that comes from the government side so far in these hearings.
Mr Parker: We're mixed up in the terminology. You're talking about another point, and that's a matter we are taking advice on in the course of these hearings. We've been asking a great number of the deputants before us as to their views on that, and you've been very clear as to your view. That's all being taken into consideration.
1610
Mr Michael Brown: I appreciated your presentation. I thought it was thoughtful and powerful. I'm interested in your views on systemic advocacy. We know the Advocacy Commission's gone. Forget that; whether we like it or not, that's happened. In your view, what suggestions could you give to the government on a replacement; they say they want to replacement over there. Tell me, in your view, how we can get to that point from where we are now.
Mr Dow: When I was going through all of the documents that I had access to, it wasn't a question of whether or not shutting down the Advocacy Commission was a good decision. I haven't determined whether or not that was a good decision, but what I have determined is that we do need some central office somewhere in Ontario where we can address issues of individual advocacy so that trends can be formulated, not just within the AIDS community but within all vulnerable communities.
We may find that things that are happening to vulnerable people living with HIV may be similar to things that are happening to people who are elderly, so we need that one central office so that we can change the system. It doesn't make sense to have us running around doing individual advocacy on the same issues if we can change it systemically. So we'd like one office.
Mr Michael Brown: Some sort of just coordinating office that would let everybody know your group's interested in this particular issue and so are these others and maybe you should get together and talk about it and approach it on a common front.
Mr Dow: Exactly.
Mr Michael Brown: That sounds like a reasonable and strong suggestion. On the level of individual advocacy, your organization and ones like yours, not just relating to AIDS but other organizations -- we've had quite a number through here over the past while -- I'm wondering, does your community, though, find a particularly difficult time in advocating for patients as individuals, or is it more that you have difficulty on a kind of global basis for your community?
Mr Dow: I think our organization, and the AIDS movement as a whole, has been very lucky because we are very well organized. We've been able to do individual advocacy. We sit on things. The Wellesley Hospital has a community advisory panel for HIV, so there are many groups that are represented there to make sure that the hospital is addressing concerns that we have. There are many concerns that they've been able to address. We've worked with Women's College Hospital around the sensitivity issues that people in emergency need to understand when they're treating somebody who comes into emergency who has HIV, and they've actually partially funded with us a position to do that type of training. So we've been very, very lucky there in the AIDS movement.
One of the things that we find at the foundation is that there is a lot of individual advocacy that is happening, but it's because of the years that we've spent building this up and it's because of the connections we've made over the last few years with other disability communities. I think I answered your question.
Mr Michael Brown: Yes. I was thinking that was probably the case, from my knowledge of organizations.
It seems to me that you are in a particularly good position, because of your experience, to talk to the educational value, because I think among your own community you have been able to educate people to their rights and what it is that they need to do to make themselves heard, and much of what you have developed over a period of time would be very valuable shared with other organizations completely unrelated to your particular cause.
Mr Dow: One of the programs that we did develop was a peer advocacy program where we train individuals to do advocacy for other individuals. Also, when we see a client, we teach them how to do self-advocacy for themselves. The only time that we're the actual advocates for most of our clients is when they ask us to intervene on their behalf. We've found that that's been very successful.
One of the interesting submissions that I listened to was from I think it was the Ontario Nurses' Association, where one of the presenters said that they considered nurses to be very good advocates. That hasn't been my experience, and in talking with the clients of the foundation, that hasn't been very many people's experience. I think that the nursing care has been fine, but I believe they're in a conflict of interest to be an advocate on my behalf and I'd rather bring somebody from a community who's familiar with my disease in to do my advocacy. We're lucky in the AIDS movement that we have that.
Mr Michael Brown: Again, you're confirming my suspicions about your abilities. The government has talked about the education component and self-advocacy and training volunteer advocates, and it would seem to me that your particular experience may be far stronger than many other organizations. Have you had the ability to share your educational approach with the government to this point? Have they asked you about these issues?
Mr Dow: That's a big concern for us, that there isn't that type of consultation happening, and I'm not sure that when it does happen it's being listened to.
I don't want to beat up the government, but it would seem to me more logical that you talk to the people who are going to be devastated by some of the changes that are proposed before you ram them through, so that at least we have a voice at the beginning, because then I don't think the changes would have been written the way they were. I think advocate would still be in the legislation instead of being really watered down, I think rights advice would still be in there, all the things that we know that are really important.
We're not asking for the government to spend a whole bunch of money on something. We understand the constraints they're under, but we would like to have a voice in the changes that are going to directly affect us on a day-to-day basis.
Mr Michael Brown: We're having some difficulty. We understand what the agenda is, but we would have thought that if they were going this way, they would have something to replace it immediately.
Mr Dow: So would I.
Mr Michael Brown: It seems to me the old "throw the baby out with the bathwater" sort of thing. It's easy to criticize the present system without putting up one of your own to measure against that.
Mrs Boyd: Thank you very much for your presentation. It's good that we have some time to actually talk with some presenters a little bit.
On the issue around capacity, it is true that a health care professional who finds you incapable does not have to tell you he or she has found you incapable and does not have to provide rights advice under Bill 19. Assessors are different than health care providers and that's where the confusion came in, but I think for most people it is that immediate issue around the health care provider not providing that information that has caused a lot of the concern within the community.
Certainly we have heard very conflicting views from health care professionals about whether or not they ought to do that. We have some physicians coming in front of us who say, "Of course that is my job, that is my ethical requirement as a physician," and others who say that they're not lawyers, that this is not their job and that no, they shouldn't have to do it. There seems to be actually some real concern that there isn't a uniform position.
The nurses you spoke about, for example, said that yes, they thought that was their ethical responsibility as a profession. The OMA didn't seem to think it was, but individual physicians who have come in front of us have said that they did think, very much, that it was, interestingly enough, many of those being psychiatrists who have been used for 10 years to working with the Mental Health Act which requires them to do that, and they are no longer objecting to that because they've learned to work with that act. So I think it's kind of interesting.
Similarly, the findings of an assessment by an assessor, when you get to that formal stage of an assessor, have to be given to you. In other words, you have to be told you've been found incapable. What you're thinking of are the reasons. Under this bill the written reasons, which were required under the previous bill, don't have to be given.
Mr Dow: For us, especially living with HIV and AIDS, dementia is a reality, but also another reality is dealing with the stress. My concern is that if I'm really stressed and really angry, I may be assessed as not being able to be competent to make decisions on my health care.
I kind of look at the list of who's going to be called up, and I called my parents in. They would be the people who would come up and make decisions, but they don't feel capable to make those decisions and that's what concerns me about this law. It puts a huge onus on me to set things up to sort of intervene there where it also makes my parents feel guilty that they're in a position where the government is expecting them to help do something they're just not capable of doing because I was in a bad mood one day in the hospital. That's what our concern is.
1620
Also with dementia, it could be fleeting. You could be a little spacey for a couple of days in the hospital, and I've done that, whether it's dementia or whether it's with drugs, but the next day I may be able to make those types of decisions on my own and this bill doesn't address those types of issues.
Mrs Boyd: I think you're wrong there.
Mr Dow: No.
Mrs Boyd: I think you are wrong there, in that there was some very careful design feeling about cyclical incapability and I think there's room in here for that. I think a lot of what the problem is is that there is a section there that was specifically asked for by some members of the psychiatric community around Ulysses contracts, where you do give up that right, you waive your right in a power of attorney to withdraw that power of attorney under those circumstances. You would never put yourself in that position.
Mr Dow: I might not. If I was truly aware of all the laws and all the things --
Mrs Boyd: But it is a very specific thing that would have to be written in. If you're not specifically waiving your rights and your power of attorney, then that wouldn't happen and you would have to specifically waive them under the section, I think it's section 50, of the act. There are some protections there around that kind of thing.
I think your worry is, will people actually inform you as you go along of what's right, and will you be able to exercise those rights if you don't know what they are?
Mr Dow: Without the advocates and the rights advisers who can be there, but I'm not guaranteed I'm going to have access to those provisions.
Mrs Boyd: That's right and often when people are in a vulnerable state, they have a hard time thinking about how to do that sort of thing as well, don't they? If the rights advice isn't offered at the time, it isn't necessarily going to be something that you remember in those moments of stress. I think that's quite true. You said you had some questions about definitions.
Mr Dow: Just as a really quick example, one of the definitions we had difficulties with was treatments. We believe any individual has a right to consent to any treatment, but Bill 19 changes definitions of "treatment" and it now excludes certain activities. Of concern to us would be that assessment of capacity is no longer in that definition; communication of an assessment or a diagnosis; admission to a hospital or other facility; treatment that in the circumstances poses little or no risk or harm to the person; and anything prescribed by the regulations as not constituting treatment.
That was one of our really big concerns, that the definition of "treatment" doesn't really explain to us what treatments are any more, and it sort of gives powers to the medical professionals to make decisions and perform tasks that we might not want to be part of.
Mrs Boyd: And possibly, also, to withdraw things you might not want withdrawn. We've heard a lot about issues around nutrition and hydration and we know that a population that anticipates a point where they may be in an end-of-life stage might have some concerns about that. We certainly heard that from other groups, that you need to have some understanding of whether or not nutrition and hydration, for example, are a treatment. Are you entitled to be offered food, whether or not you decide to eat it, whether or not you physically wish to do that at that time?
Those are the kinds of questions that, you're right, aren't there and that have a lot of people exercised. As we go through the amendment process, we're going to try and get some clarity around some of those things. I think there's been a forgetting that some of the things that are in there for a particular group -- for example, the admission to a long-term-care facility -- are there for a particular group that asked for it, but may have implications for other groups that didn't ask for it and I think those are the kinds of things you need to be concerned about as well.
Mrs Johns: Section 15 of the act talks about the return to capacity you were talking about earlier and the ability one day for someone else to have to make the decision for you and another day for you to be returned to capable and be able to make the decision for yourself, so that's section 15 in the Health Care Consent Act.
Mr Dow: And without rights advisers and advocates to ensure that happens.
Mrs Johns: I wasn't here when the question was asked, but we've been listening to how rights advice would be best brought out to people, so we haven't said that won't be an amendment. We are looking at that possibility at this particular time.
Mr Dow: So we can safely say that will be an amendment?
Mrs Johns: We are looking at it, I said. Yes, we are looking at it.
Mr Dow: We'll take that as a yes.
Mrs Johns: Thank you very much. If you'd like to suggest anything, we'd be happy to hear from you. We're waiting with anticipation to see what's there from the other parties.
The Chair: I will just quickly read in a letter from the Ontario Association of Non-Profit Homes and Services for Seniors. It's directed to me. It says:
"On Monday, February 19, 1996, we appeared before your committee and presented our comments on Bill 19. At that time copies of our written submission were not available.
"It now appears that 35 copies were received at Queen's Park on Friday morning, February 16, 1996, but were not delivered to the clerk's office until today," meaning our clerk. "We would appreciate it if you would advise committee members of this fact."
They were somewhat embarrassed.
WILLIAM BUTT DAVID MOLLOY
The Chair: Our next submission: Dr William Butt and Dr David Molloy. Welcome.
Dr William Butt: I'm Dr Butt. I just circulated a very brief outline and that's probably all we'll discuss at the moment. First, I have to commend and thank this committee for allowing us to come before you at this time. I also feel I should commend the government on Bill 19 and certain amendments it has made.
At this time, we hope to present to the committee a brief summary of conditions with respect to capacity, and second, a draft of an act for the accurate capacity assessment. This act would be based on studies that have been made on a scientific pilot program, also confirmed by research. The assessment of capacity to manage health care has been put together and we have a rather large volume which we will probably submit for you. I have it here, but it's not one that you could distribute as 30 copies.
As far as we're concerned, we're probably looking at Bill 19 with respect to health care. I'll probably combine most of my remarks or inquiries with regard to assessment of capacity with regard to health care.
A draft of assessment of capacity for personal care provides for the government a referral, if necessary, when medically or for other reasons the person's capacity has to be reassessed. In other words, to me it's like a referral if I wanted to get a medical opinion prior to doing surgery.
There is very little else to say with regard to that except that the results from this assessment would probably be referred back to those who are looking after the care of the individual. Many of these have been dealt with, unfortunately, from my feeling, in health care in a legalistic manner and also bring out the adversarial process, which is probably not the best for the individual being looked after.
The measurement of capacity or vulnerability can be accurately and reliably done with valid instruments. These have been produced and are available. This proposal I'm suggesting would be simple and very cost-effective.
I think at this point we'd be open for questions, rather than belabour you with a lot of my ideas, but perhaps we could explain what we have to suggest for the committee. This is Dr Molloy, who will continue.
Dr David Molloy: I was on the Advocacy Commission and I suppose I have the privilege of saying I was the first person to resign. I resigned after about two months from the Advocacy Commission when I realized that the Advocacy Commission was not going to achieve what it set out to do. At the same time, I was employed by the Substitute Decisions Act, the office, to develop instruments to measure capacity for health care, personal care, property and finances, and they gave us $620,000. We had a group of researchers from McMaster in Toronto and spent a year developing the instruments. In the middle of all this stuff, I got appointed to the Advocacy Commission and then everybody became very excited that I was in a conflict of interest because I was working for the enemy making competency instruments and here I was supposed to be an advocate and people thought that was completely incongruous. So eventually I resigned from the Advocacy Commission and the Substitute Decisions Act cut our funding for the study, so we lost everything. We actually had the instruments and had spent a year developing instruments, and we actually have instruments that measure capacity but nobody wants to listen to us or use them.
1630
One of my problems with this whole process that I'm watching -- I'm very frustrated and I just told Trudy here that I get blood pressure when I come back to this stuff because I'm a health care professional; I'm a geriatrician. I work with the elderly every day of the week. I get asked to see people for assessment and capacity is an integral part of that assessment. I was telling Dr Butt in the car on the way up, it's kind of like being a mechanic and working on cars all the time and being told that you're not allowed to work on the brakes, that if you're going to get the brakes fixed, you have to get this guy to come from Toronto who's going to come down and examine the brakes and it's going to cost you $1,000. So you're going to say, "Well look, forget about the brakes, we can get by a bit." This is what's happening all the time in the health care system.
This capacity is totally blown out of all proportion and now what we're doing is, we're developing legislation in offices that are air-conditioned on the 15th storey of some building in Toronto that are totally disconnected from the health care system and trying to impose the system on the health care system that's legalistic, adversarial, Byzantine, completely inappropriate and very expensive, and it just doesn't work. We spent literally hundreds of millions of dollars developing the Substitute Decisions Act and we had an Advocacy Act which was totally adversarial. We were spending $1,000 assessing somebody with two assessors in this whole process, determining the person's incompetent and then we have an advocate coming in and telling the person, "You don't have to believe all this stuff. You can fight the whole" -- and the whole thing was just a joke. To me, the whole thing was -- anybody in the health care system could look at this stuff and say this wasn't going to work and it obviously didn't work.
My concern is, again, here we go revising the old blueprints and the plans and nobody has ever tested this stuff in the health care system. Can you tell me it's going to work? Can you tell me what impact it's going to have? No. We've never even bothered to pilot any of this stuff and it's all social experimentation. We actually have the researchers that the government hired to develop the instruments and the process and they went and developed them and then when we told the government, they didn't like what we had to say so they cut us off at the knees. If you look at our final report, we told them that this stuff would not work. So when you tell them it's not going to work, and this is the process you have to use, they cut you down.
Let me give you an example of what I'm talking about and make it really simple and make it practical for you.
I have an 84-year-old woman who's living at home and burning pots and pans. Her daughter is concerned about her -- and I don't know about aides and stuff; I'm a geriatrician. But 90% of the problems with incapacity we have in this province are with elderly people and it's getting bigger and bigger and bigger, and here I am telling you what the problem is.
An 84-year-old woman living at home, she's burning pots and pans. Her daughter's concerned about her. Mother doesn't want to acknowledge she has a problem and she doesn't want to go and live in an institution and she says: "I'm okay. I've been living on my own for 50 years. Leave me alone. My daughter's a busybody." Now, if we have a capacity assessment process, the daughter's going to have to contact somebody in the government office and you're going to have to send out assessors. You're going to have to tell mother that this is the problem: "Your daughter squealed on you" -- you have to -- "Your daughter squealed on you. We're going to come and assess your capacity and if we assess you as having capacity, then you can decide to stay at home and continue to burn the pots and pans and put the whole apartment building on fire and roast everybody. Or, if we decide that you don't have capacity, then somebody else can make your decisions and put you in an institution."
The solution for the woman is not capacity. The capacity is one of the problems. The problem with the woman is, she's burning pots and pans. Switch off the stove and get her Meals on Wheels and we have no problem.
The problem with capacity is that we're making this big deal of capacity but it's usually a symptom of an underlying problem and it's usually part of a complex mix of problems in a person's life. If we make capacity a legalistic, adversarial affair, then we're going to blow it out of all proportion, set people against each other. It should be done as part of an integrated assessment process. Sometimes the solution to capacity is not all of the stuff we do and as health care professionals out there doing that routinely, day in, day out.
What percentage of people do you think in the long-term -- care system lack capacity? About 50%. What percent of people come to hospital, lose capacity, gain it again, have capacity for this, don't have capacity for that? Capacity's not an all-or-nothing affair: you can lose it; you can get it back again. For example, even within health care, you could have capacity to make certain decisions and lack it to make other decisions. And you really can't come in and say the person has capacity for health care. They could have capacity to make one decision and not to make another. With the system that we're inventing, it's going to cost you $800 to $1,000 to assess capacity every time we have to make any decision in the health care system.
I would suggest to you, the solution to the capacity issue is not the way you're going about it. The solution is simple instruments that we have developed that are objective, scientific, valid and reliable, that you can use routinely to assess capacity and 80% of the time they'll assess it, and if they don't work, then the other 20% you need a more complex system. But it's got to be part of an integrated assessment of older people and not a single issue the way you're doing it now. This process of developing laws and trying to impose them top-down the health care system -- I'm afraid it won't work. Thank you.
The Chair: It's actually Mrs Boyd, but rather than use your time, Mrs Boyd, and with your permission, I would ask you to describe in general the instruments.
Mrs Boyd: I think we saw them this morning. I think the gentleman from the cerebral palsy foundation brought in your instrument, Ace.
Dr Molloy: No, Ace is not an instrument.
Mrs Boyd: Oh, I thought you were the person that he had collaborated with.
Dr Molloy: No.
Mrs Boyd: Oh, okay. Must be another Dr Molloy who's into this whole field then.
Dr Molloy: We don't call our instruments Ace. I've never heard of Ace before.
Mrs Boyd: Oh, okay. We'll look at our stuff and we'll show you what it is.
Dr Molloy: Our instruments basically are very simple. Capacity's got three components. It has context; you have to understand the person's context. The person has to know their decisions and appreciate the consequences of their decisions. To assess capacity, you have to actually construct the decision. You have to have a model of capacity. For example -- give me an example of a capacity assessment you want to do.
Mr Doyle: Okay, I have one.
Dr Molloy: What is the capacity assessment?
Mr Doyle: I'm sorry. I misunderstood what you were going to say.
Dr Molloy: Give me an example of a decision you want.
Mr Doyle: Well, for example, I drank too much coffee last night and I got one hour's sleep and I'm having a bad day.
Dr Molloy: Good. Me too.
Mr Doyle: I'm having a bad day. How would you judge that?
Dr Molloy: What's your decision? There has to be a decision to assess capacity. You have to have a decision. Capacity can only be involved in a decision.
Mr Doyle: Okay.
Dr Molloy: You want to buy a pair of socks. You want to buy a car. You want to make a health care decision. You want to choose where to live, go on holiday. What's the decision and I'll tell you how to assess capacity.
Mr Doyle: Well, okay. I want to buy a pair of socks.
Dr Molloy: Okay. You want to buy a pair of socks. It's a fairly trivial decision and we probably wouldn't want to assess your capacity to do it because it's not going to have serious consequences for you, but say you're going to buy something.
Mr Doyle: Okay.
Dr Molloy: Well, what are you going to do? You're going to buy something. Let me do a decent decision because the pair of socks is fairly trivial. Give me a decent decision: health care, personal care or something. Let's not trivialize it that much.
Mr Doyle: Okay, we won't trivialize it but I think it's perhaps important to show that it is trivial, isn't it?
Dr Molloy: Well, no, it shouldn't be trivial. You shouldn't be assessing people's -- capacity is a very important thing because if you lose capacity, you lose freedom, and millions and millions of people have died for freedom. The last thing society wants to be doing is arbitrarily taking away your capacity. Just because you seem to lack capacity, we shouldn't be assessing you. There should be a serious reason for assessing capacity. It's not a trivial thing.
Under the present system, there are no criteria for actually proceeding. If somebody asked for it, you get it, and it shouldn't be that simple. There should actually be risk to life or to property. It shouldn't just be, you know, like Jean Chrétien, somebody --
The Chair: Excuse me. Do you have one? We haven't said that. The question was mine. You need an example. My senior partner at my old law firm at the age of 77 had to make a decision regarding varicose veins, which was giving him some discomfort. He was in excellent health.
Dr Molloy: Okay. So --
Dr Butt: Let me answer this. I've been in practice for a good number of years: in emergencies for a good 20 years, looked after hundreds of facial, auto accidents, reconstruction, and so on. So you're asking me about a person with regard to varicose veins, have I heard you correctly?
The Chair: Yes, at the age of 77, that gives him some small discomfort.
1640
Dr Butt: Okay, and whether to look after it or not. Now, am I to ask or am I to interpret the capacity of the individual to ask me as a surgeon to look after them? Is this the position? I've done this thousands of times.
Dr Molloy: Can I just talk about the --
Dr Butt: Let me finish on this.
The Chair: Yes, whether he should proceed and whether he has the capacity to --
Dr Butt: The point being that the health care system of which I've been part -- very definitely, I would say okay, I'd explain it to the patient. I would tell him what had become, now it's called informed consent, and if they do not appreciate what I'm saying, then the next person is the person who may or may not be with them, and at that level, if nobody understands and I see a serious risk, I have to make some sort of decision personally. Now, to bring in somebody that, for whatever reason -- if this is going to complicate the person's life or the way he can live, then I may have to have somebody to assess them on a specific thing. But personally, this has all been done for years by competent people in the field.
Dr Molloy: Can I tell you how we propose to do it?
Dr Butt: Just a minute.
The Chair: Excuse me, Doctor, we'd better start the rotation. Mr Brown is actually leading us off and we have about five minutes each.
Mr Michael Brown: What you present to us is a very interesting concept that's new to me, at least the empirical part of it, where you --
Dr Molloy: Can I just briefly describe how you would do that?
Mr Michael Brown: That's what I was going to ask.
Dr Molloy: You would construct a decision. The decision here is to have varicose veins done or not. It's not a life-threatening procedure. You would have to describe to the person the potential benefits of having the procedure. So, for example, one choice is to have it done, the other choice is not to have it done. The benefits of having it done are, you will not have the discomfort any more, you will not have the swelling in your leg, and you will not have the pain. The downside is that you can have serious problems from this, it can go wrong, you can have infections, and you list all the serious problems.
You actually construct the decision on a piece of paper and you say: "Here's the decision. The choice is to have it done or not to have it done. We have beneficial, good consequences and bad consequences." You write them all down for the person, you give them to the person and you come back to the person and say, "Okay, what do you want to do?" "I want to have them done." "Why?" "Well, because I want the good things that are here." "And what about the bad things?" "Well, I know I could have the bad things, but I'm prepared to take that risk." Fine, and there's the decision.
If you start doing capacity assessments, you have an obligation to educate the person and you have to construct the decision and you have to actually write down the good things and the bad things, and that's truly informed consent. You can construct that for any single decision and that was the model we developed and it worked. It was very simple. So basically, you construct a model. The person says, "Which is more important to you, safety or quality of life?" And the person says, in this case: "Quality of life. I'll take the chance on the safety and I want to improve my quality of life. Therefore, I choose to have the veins done and therefore I accept the consequences." That's it.
For the woman living at home, the context again is safety or freedom -- safety of living in an institution or freedom of staying at home. Her choices are to stay at home, but she's at risk, or to go to an institution where she's potentially safer. You list those out and she says, in this case: "I choose safety. I go to the institution. I give up my freedom," or whatever. You construct the decision and it's a very simple model and it works extremely well. It's very simple. That's why all this fuss about capacity and this $800 and $1,000 assessment is completely inappropriate, I think. It couldn't be simpler, really.
Mr Michael Brown: If I'm understanding, though, the capacity assessment in the case that we've just presented is based on the person making a rational choice.
Dr Molloy: No. Capacity assessment's got nothing to do with the choice you make.
Mr Michael Brown: It's understanding the process --
Dr Molloy: You don't call a person as having incapacity because they make a decision you disagree with. That's a bad decision. For example, say I decide I want to drive down Queen Street here at 200 kilometres an hour. I can kill pedestrians. Now you say: "That guy's got to be crazy. He can't have capacity." You say, "Why do you want drive?" "Because I like the fun. I really like having fun. I think it's very exciting. I want to drive down Queen Street." "Well, what about all the people you're going to kill?" "Personally, I don't give a damn. I accept, I understand I could kill people, but I don't care." Do I lack capacity? No, I don't. I don't lack capacity; I'm just making a bad decision.
You can't use capacity as a way of enforcing or stopping people from making bad decisions in society. You say: "That person has capacity. We're not going to put him in prison because he lacks capacity. He has capacity but he's making a terrible decision. We have to deal with the bad decision." What people are afraid of is that we're using capacity, only we have a double standard in the health care system. If you're lying in bed and you agree with everything that's happening, then everything is okay. It's only when you start refusing treatment that people start questioning your capacity. So we're using capacity in the health care system to make people do what we think they should do, and that's the wrong thing. That's the problem.
Mr Michael Brown: I'm having some problem understanding exactly what it is in that it isn't the decision we're questioning. It's whether the person understands both sides of the question.
Dr Molloy: The consequences, absolutely.
Mr Michael Brown: And how do you determine whether they've actually understood both sides of the question.
Dr Molloy: They answer you. You ask and they answer you. You have to construct different models for different people who have communication problems.
Mr Michael Brown: Then, if the answer is not appropriate to the information they had, you could say the capacity for that decision isn't there.
Dr Molloy: For example, if I'm inconsistent and I say I prefer my freedom or I prefer safety, I couldn't risk anything bad happening to me but go ahead and do my veins, that would be inconsistent. Or if I said to you one minute I want the veins done and the next minute I don't want the veins done, I'd be inconsistent. Or if I said to you, "Oh, no, I believe that nothing is going to happen to me when I have that surgery; everybody else gets side-effects but not me, it could never happen to me," then I have denial; I don't accept the consequences.
Mr Michael Brown: All right. That was the question.
Dr Molloy: But if I'm consistent and I can answer the questions appropriately and I accept the consequences, I have capacity. That does not mean that I cannot choose to make a very bad decision. That's a different issue.
Mr Michael Brown: I understand that. What you are interpreting, then, is that the person understood what the choices are.
Dr Molloy: They know their choices and appreciate the consequences. That was your own law. You operationalized that. It's very simple, and you put it into the system and nobody wanted to hear about it. You can ask me why I think that.
Mrs Boyd: Dr Molloy, my understanding of what you were doing was to develop the procedures for the Consent and Capacity Board, am I right? Of those, we had a very small number of applications from people who weren't psychiatric. In the six months -- well, April to December -- 341 were looking at capacity, so when you say everybody having $800 to $1,000 for a capacity assessment, that is not the intention of this bill and never was the intention of the current bill that's in force now.
Capacity on a normal basis would be handled by the health care provider, based on exactly the kinds of comments that you've used, whether the person can appreciate the consequences of not having the treatment, of having the treatment and so on. That was the anticipation for the vast majority. It's only when the person refuses and applies to the Consent and Capacity Board that the other kind of situation would kick in.
I understand your frustration, but it really isn't hundreds and hundreds of people we're talking about. We're talking about only those who apply to the board for a capacity assessment either because the persons themselves don't recognize that they're incapable or because there's some other problem that's happened with that assessment. We had 341, during that period from April to December, who would have fitted into the category that you're most concerned about. I think most of those would have been gerontology patients as well. I suspect you're right on that.
1650
Dr Molloy: How are you going to assess capacity in the health care system at present? How is it being done?
Mrs Boyd: I agree with you there should be a simplified method. I'll show this to you because it's very much what you're talking about as a kind of a simplified guide that we got from one of our presenters. It sounds very much as though it goes along the lines of what you're talking about, in fact telling those people how to make that assessment, how to score themselves as to whether they're sure or unsure.
It still leaves that broad middle category of somebody being probably capable or probably incapable. That's the group of people you might want to have apply to the Consent and Capacity Board. But I really understand your frustration around this and I agree with you -- it was always anticipated -- that in the first instance it would be a relatively simplified kind of procedure.
Dr Molloy: Our problem was that we actually developed it. The government asked us, we spent a year developing them and all of a sudden they just cut us off. One day they just wrote to us and said, "Stop." The reason we were told was because the process we were developing did not fit with the process they were developing and that there was some other group that was developing this process. It was very confusing, because actually we were informing the government as we went along. We were having regular meetings with them and telling them all the way along what was going on and then one day, honest to God, out of the blue we got a letter saying, "Stop." It was incredible. Nobody wanted to hear what we had to say after that.
Mrs Boyd: Let me just tell you that as one of the ministers -- I assume this was while we were still in power, was it? Or was it since?
Mr Molloy: You were kind of winding down at the time.
Mrs Boyd: We were winding down. This explains it. It's amazing what happens when an election has been called and there is a power vacuum. I really want you to know that when I was still there --
Dr Molloy: I don't think it was done at a political level, actually.
Mrs Boyd: No, I don't think it was either. Our understanding was that that process was going along and that those instruments would be available to the capacity board.
Dr Molloy: I'm not going to comment on how it went. I'm just telling you what happened from my perspective. I'm not here to throw stones at anybody.
Mrs Boyd: Our impression was that the expertise was being used properly as well, just so you know that, because I think we're all sitting here going, "Whoa, this doesn't sound like a good thing that happened."
Dr Molloy: The only thing you can do to people after that is to have character assassination, right?
Dr Butt: May I answer quite differently from Dr Molloy? I'm just a plastic surgeon looking after reconstruction and burns and all these sort of things. There's many a time when I get into the situation where, if you take a third-degree burn over 30%, the patient is in this unfortunate position of not knowing what's going to happen, maybe thinking he's going to live; I may think in my mind that he probably will die no matter what I do.
However, with that legislation, which was in as of April 3, 1995, we were put in a position -- I was and so were many of the other doctors -- of finding an impossible thing, besides bringing in somebody who reads them their rights. It makes no sense, because then I stop looking after him, the other fellow stops looking after him, and say, "When this fellow comes in to read him his rights and he doesn't understand, what am I doing?"
I'm not saying that the people who were doing this over many years made as much as possible an educated decision. We certainly brought in informed consent, we brought in all of the other reasons of making everybody know, but when it was legislated that we should stop and bring in these people it was impossible to carry out, and that is probably my strongest concern in this particular field. I don't want to argue on the power of attorney and the advocacy and who does which and what. Some of it I agree with, some I don't, but that's irrelevant to what I actually know, and I've been there. That was my concern.
I also read the act from beginning to end and realized that there was a $5,000 fine against me if I didn't call in these rights advisers. Anybody who's in emergency for a certain length of time, and it's usually the younger doctors, and a $5,000 fine -- he says: "Well, that's fine. We'll leave it and call." A few people did die, as you know.
Mrs Johns: I just want to make a comment and I'm going to pass to my colleague. In the Health Care Consent Act, under section 3, a person is deemed to be capable if they understand the information that's being told to them and if they reasonably can foresee the consequences of the action. That's basically what you're describing when you're describing your decision tree with the different alternatives, the yeses and the nos: "This is the action. Do you understand it and do you see the consequences?" In effect, I believe we have taken into consideration what you have said. I think you outline it maybe a little better with the decision tree analysis, but I believe that's the process we are now going to go through under health care.
Dr Molloy: The problem is that you say those words, but how do you actually operationalize that? How do you make a determination that this person knows his choices and appreciates the consequences? Does "Uh-huh" do? Is "uh-huh" okay? Do you say, "Do you know what's going to happen?" "Uh-huh, I do." Is that enough? How do you actually operationalize that? That's the problem we have. We are implementing from the top down. We had the legislation, the Substitute Decisions Act -- same thing; you know your choices and appreciate the consequences.
What does that actually mean in the emergency department? When I make a decision about operating on somebody, what does the person have to say to me? That's what the health care professionals don't have and that's what government after government has repeatedly failed to do to the health care professional. Health care professionals are terrified of this whole area because they can't interpret the laws. It's easy to sit here, you and me, and say, "Well, this is what they have to do," but I'm in the emergency department. What does that person have to say to me before I can do it? That's the problem.
Mrs Johns: For example, after I've just broken my leg I have to understand what you're telling me. I have to understand that I have a broken leg and then I have to understand the consequences of that. I think that's fairly straightforward in knowing whether I'm capable to make that decision or not. I don't understand why this is some involved process that we're going to go through. I imagine predetermined decision tree charts or something like that. Is that what you're suggesting?
Dr Molloy: No. The problem is that competency is not being interpreted like that. Some psychiatrists in this province will ask the person: "What day is it? What week is it?" If the person doesn't know, they're incompetent. There's all kinds of stuff being done and competency is being misinterpreted. The average health care professional in the field doesn't understand competency. If they don't understand it as simply as that, they don't know how to ask the questions and they don't know how to interpret the responses. For you it's very easy. For a deaf 85-year-old person for whom English is not the first language and who is defensive and has short-term memory loss it's not so easy. Interpreting their capacity is different. It's difficult. We need simple guides for health care professionals and not complex legislation, and that's what we've been giving people.
Health care professions are terrified by this, they're completely confused by this and we've been giving them the wrong information. We spent literally hundreds of thousands of hours teaching about the Substitute Decisions Act and the Advocacy Act and when to call them and guidelines. Health care professions are extremely confused by all of this. We have not put this into the system. You need to put it in the system and test it -- it's easy to do that -- work through the glitches and find out where the problems are. I don't believe we should be doing province-wide experimentation on the health care system, and that's what we're doing. You can actually pilot this in the health care system and see if it works and develop simple aids and simple guidelines and videos for health care professionals. We're not doing that.
Mrs Johns: I guess I don't understand what aid we need to ascertain if a person understands it and if he sees the consequence.
Dr Molloy: Most health care professionals don't even understand that much.
Mrs Johns: I think you're underestimating the health care professionals.
Dr Molloy: I work in the health care system.
Dr Butt: I've worked my whole life in exactly those situations. I don't know whether I've described it accurately for you, but if you've lived as I have when I was in Detroit -- we had them shocked and we had this and that. It wasn't nice, quiet Toronto, although Toronto is moving that way. There was no question that we had to make decisions, and the capacity of the person was often very, very fuzzy. With these laws coming down, heavens, I would just have to walk away from them and call in one of these rights advisers. That was the greatest fear and it was a real, genuine fear of everybody who worked in emergency.
Dr Molloy: If it's that simple, why does it cost 800 bucks? Why does it cost them between $800 and $1,000 if it's that simple?
Mr Parker: Dr Molloy, if this issue is to be pursued, would you prefer to see further detail in the legislation on the matter or would you rather have the colleges work out the details and give directives to the profession?
Dr Molloy: I'd prefer to see simple little packages going to health care professionals, simple little aids in how to measure capacity instead of complex interpretation of difficult laws. Give them simple little aids: "This is how you measure capacity. Here's a sample interview. This is how you implement this law." That's what they need.
Mr Parker: Would this be an appropriate matter for the professional college to work out as a profession?
Dr Molloy: Probably.
1700
Dr Butt: May I answer that? I've been treasurer of the OMA, about 10 years at one point, and also the college. Again, the college can look after the people and represent them, first. Secondly, the doctors can listen to their cases.
The college has to do with laws, and I think we're talking about something that is not in the field of the legal people, whether it's laws or whether it's our own laws, our governing laws with regard to care. This is an entirely different situation, which is not an illegal situation; it's something that has been created. If it gets into the legal part of it, we're into big trouble.
Dr Molloy: Yes, you don't want this to become legal.
The Chair: Thank you for your practical approach to the problems we're deliberating and all that good stuff.
ONTARIO DENTAL ASSOCIATION
The Chair: Our next submission is the Ontario Dental Association. Welcome.
Dr Roger Howard: Good afternoon, Mr Chairman. Thank you for this opportunity to meet with the committee about Bill 19. I'm Roger Howard. I'm a general dentist from Ottawa. I'm also president of the Ontario Dental Association. With me today is Linda Samek, our director of professional affairs.
The Ontario Dental Association is the voluntary professional organization which represents the dentists of Ontario, supports them in the provision of exemplary oral health services and promotes the attainment of optimal health for the people of Ontario. The vast majority of our members provide essential health care services in private office settings in communities throughout Ontario.
Today, our comments will focus on the proposed Health Care Consent Act. In general, we're pleased with the direction of the legislation. We're here to support the initiatives and offer some advice on one or two aspects of the proposal.
Because dentistry is community-based, it's necessary to implement a consent process that is not only clear for providers and patients but also usable in all practice locations.
We wish to state at the outset that the proposed Health Care Consent Act addresses many of the problems associated with the existing complex legislation known as the Consent to Treatment Act. The existing consent to treatment legislation imposes unreasonable restrictions on the delivery of health care. The rights advice process is quite simply not workable in the community practice setting.
Let's be perfectly clear. Under the existing Consent to Treatment Act, the rights adviser only explains that there's been a finding of incapacity and informs the patient of the right to challenge the decision. The rights adviser is not able to provide or refuse consent to treatment on behalf of the patient, and therefore the introduction of this intermediary simply delays the consent process and, in our view, creates a disturbing myth that the patient should not trust their regulated health care provider.
Fortunately, the Health Care Consent Act aims to restore faith in professionals, and we certainly applaud the government for its efforts to restore the balance of trust in the patient-practitioner relationship.
The concept and process of providing informed consent is not new. Traditionally, patients and health care providers have entered into agreements about patient treatment plans based on informed consent. While the existing Consent to Treatment Act attempts to build upon this customary practice that's well established in common law, it is simply too complex. In fact, the process is so complicated that our vulnerable patients may not be able to receive needed treatment in a timely fashion.
The ODA has provided brief overviews to our members on the existing Consent to Treatment Act to enhance an understanding of the requirements under that act. But the fact is, brief overviews may not provide sufficient information to ensure that practice always reflects the letter of the law. Our alternative was to create documentation like that developed by the College of Physicians and Surgeons or the Ontario Hospital Association. Yet providing a two-inch binder of facts like the information binder created by the Ontario Hospital Association on how to apply the legislation suggests that the law is far too complex for providers to implement on a daily basis.
As health care providers, Ontario dentists care for vulnerable adults and minor children on a daily basis. The primary concern of our members is their ability to meet the oral health needs of all their patients in a fair and timely manner. This includes ensuring that a responsible, informed consent process is followed.
Our members support the principles of informed consent. We also recognize the instrumental role of the government in the coordination and administration of Ontario's health care delivery system. Because it is important for government legislative policies and stated philosophies to be complementary, we believe there is a need to change the existing Consent to Treatment Act. Ontario dentists are pleased to see a move in this direction, and we are sure that by working with all interested groups, we'll be able to bring in new legislation that protects patients in all practice settings. We trust that our following comments will be helpful in your review of Bill 19, the Health Care Consent Act. Our goal is to enhance the consent framework outlined in the current legislation.
Purpose: The ODA supports the stated purpose of the act. We agree that there is a need for the dual goals of facilitating treatment while enhancing autonomy. We also agree that informed consent should lead to the promotion of communication and understanding between health practitioners and patients. Unlike the existing consent to treatment legislation, this bill is expected to ensure a significant role for supportive families and to permit the intervention of the public guardian and trustee only as a last resort in the decision-making on behalf of people regarding their health treatment.
Treatment: We are pleased to see a fairly simply stated list of services that are not included in the treatment definition. However, we would ask for clarification of clause (g) of the exclusion listing under the definition, "a treatment that in the circumstances poses little or no risk of harm to the person."
As this legislation applies primarily to regulated health professions under the Regulated Health Professions Act, we are concerned about the use of the phrase "little or no risk of harm." When deciding to control activities rather than scopes of practice, there was a listing of 13 duties outlined in the RHPA as potentially hazardous acts. In one of the consumer guides published by the Ministry of Health on the new law, it was noted that "the new law will build a fence around only those health services that can cause harm." It goes on to note that "by not controlling all other low-risk services and activities, the new laws will give you more choice."
Does the complementary language in Bill 19 suggest that non-controlled procedures are not considered to be a form of treatment for the purposes of the Health Care Consent Act? If this is not the case, there needs to be clarification within the legislation to ensure internal consistencies for legislative language for health care delivery.
Presumption of capacity: We agree that a provider should be able to presume capacity with respect to treatment unless there are reasonable grounds to believe that the person is incapable with respect to the treatment, admission or personal assistance plan. We believe that our members and other providers will be able to rely on this reasonable-grounds test in their practice settings on a daily basis.
Elements of consent: The ODA supports the four elements of consent outlined in section 10. In our view, the elements are simple and clear. Section 10 provides dentists and other providers a reasonable framework to follow to ensure informed decision-making. Similarly, we see the inclusion of consent to variations or adjustments in the treatment and/or for the continuation of the same treatment in a different setting, as set out in section 11, as a necessary support to section 10.
Capacity: We agree that capacity should depend on treatment. While there are similar requirements in the existing Consent to Treatment Act, we find the current bill respects the patient-practitioner relationship. The existing Consent to Treatment Act requires practitioners to confront patients where they have been found incapable with respect to the proposed treatment. As we read Bill 19, we believe that this confrontational process, together with the delaying mechanism of calling in a rights adviser, have been eliminated. The rights of vulnerable patients are protected, as treatment cannot begin without informed consent. Yet the patient and practitioner have not been forced into the confrontational and personally embarrassing position for the patient of having a notice read describing the right to challenge the finding and receiving the completed and signed notice. Now practitioners can deal with patients in a professional manner that suits the individual needs of the patient and, where required, still turn to an appropriate substitute decision-maker.
1710
We see no need to embed the rights advice process within this legislation. In fact, legislating rights advice would leave us in the same position in which we find ourselves under the existing Consent to Treatment Act, which is complex and virtually unworkable in the private practice setting. Our members are professional health care providers who work within a self-governance framework, a framework that requires the governing college to serve and protect the public interest.
Bill 19 recognizes and depends on the ability of the dentist and other providers to consider the best interests of the patient. Under section 25, there is a provision for treatment to be provided despite refusal. This legislation relies on the ability of colleges to govern professionals in the best interests of the public. In section 25, Bill 19 provides a clear statement regarding the expectation that practitioners can and will work in the best interests of patients under the most serious of circumstances.
Emergencies: We are sure that our members and other providers have individual concerns about an appeal process that delays the delivery of needed care. Despite such concerns, we support a system that embeds the protection of due process for patients and practitioners alike. We believe that the emergency treatment provisions that accompany the appeal process provide a needed balance. Indeed, the opportunity to have an order to authorize treatment pending an appeal is in the best interests of the patient's safety and overall wellbeing.
Substitute decision-maker: In general, the ODA supports the hierarchy listing of people who may give or refuse consent to treatment on behalf of an incapable person. Subsection 18(4) is an important addition. The ability to rely on those present or who have otherwise been contacted will in most instances build on the family relationship.
Principles for consent: We believe that Bill 19 takes a commonsense approach to the principles of consent; that is, consent should be in keeping with a person's wishes and/or the best interests of the incapable person. Further, we like the clear statement that the substitute decider is entitled to receive all the information required for an informed consent.
Applications to the board: We are particularly pleased to see some limitations on repeat applications to the board with respect to the same or similar treatment within six months, without the knowledge that there's been a material change in the circumstances, which might justify a reconsideration of the person's capacity.
We also see the application for direction to a substitute decision-maker as an important balancing option to consider the specific needs of the patient. In effect, this permits the substitute decider to share the decision-making burden.
Consent and Capacity Board: The ODA supports the term of appointment to the Consent and Capacity Board being established at three years or less, as determined by the Lieutenant Governor in Council. Similarly, we support an opportunity for reappointments. However, we do not believe that the reappointment process should be open-ended and suggest that a limitation of, for instance, a maximum of three terms be established.
Nothing in the Health Care Consent Act provides the substitute decision-maker the authority to make financial decisions on behalf of the incapable person. It's important to note that not all essential health care services are OHIP-insured. For dentists, a very limited number of in-hospital dental procedures are considered to be OHIP-covered services. Thus, as the cost of care may be considered in the decision-making process, it's important for the dentist and other providers to understand who has the authority to make payment decisions for the proposed treatment on behalf of the incapable person. Payment authorization also relates to the provision of treatment to the capable child who consents to treatment but has no authority to enter into a contractual payment agreement because of age. We continue to ask for positive supports to be embedded in the legislation related to the authorization of payment for treatment where consent has been granted under this legislative framework.
In summary, the ODA is supportive of the general direction of Bill 19. We think it goes a long way towards the introduction of legislation designed to protect vulnerable members of society without alienating family. The legislation builds on the presumption of capacity and eliminates the need for a rights adviser. For the most part, the proposals are practical and workable for dentists and other providers in private community practice and other settings throughout the province.
We have identified one or two specific areas of concerns that require additional clarification.
Under the definition of treatment, clause (g) contains the phrase "little or no risk of harm." Because the RHPA uses this language, we wish to ensure a common application of the phrase. If the intent is to refer to controlled acts or to exclude public domain activities, we ask that this be spelled out clearly for everyone who must rely on the application of this legislation. If a different meaning is intended, that also must be clarified.
We also suggest that the number of terms of service on the Consent and Capacity Board be limited to three, or a maximum of nine years.
Finally, we raise the question about the authority of the substitute decision-maker to make related payment decisions; and in the case of children, including teens, we question the relationship of having the capacity to make treatment decisions without the corresponding authority to enter into payment agreements. We believe that this aspect of the legislation needs to be examined to ensure complementary treatment and financial decisions can be achieved.
Once again, we thank you for this opportunity to comment on the bill. We would be glad to answer any questions.
Mr Marchese: Thank you, Mr Bevilacqua, for your presentation. I have a few comments and perhaps some brief questions. You're suggesting that there be a maximum of nine years on the Consent and Capacity Board. Did you give a rationale for that in the paper, or did I miss it?
Dr Howard: Not in the paper, no.
Mr Marchese: What are your views around that? I don't disagree, but I'd like to hear from you why you think nine years is sufficient for the board members.
Ms Linda Samek: We just want to ensure that there's an opportunity for change. In any board I think there's a reason to make sure that we have continual renewal of a number of board members.
Mr Marchese: I don't disagree with that at all. I think nine years would be a rather lengthy experience and that once people go beyond that there is --
Ms Samek: It becomes a career.
Mr Marchese: I think you're right. I agree with you.
I apologize for calling you Mr Bevilacqua. I didn't understand why you were smiling. Now I realize. You're Mr Howard. Sorry about that.
Ms Samek: In fact it's Dr Howard.
Mr Marchese: Dr Howard. Just some comments with respect to your being happy about some of the changes this government has made with the elimination of rights advisers. We're not happy with that. We think it's a serious problem. We think the majority of consumers who have come before this committee are not happy with that, and many of the groups that work with consumers are also not happy with that at all. So we see different types of people who are interested in the field having different opinions. I'm one who says we need to listen to the consumers who go through these experiences making sure that we give protections to those who otherwise would be -- not "otherwise," but who are very vulnerable.
How do we give those protections? For me, it's a balancing of your interests with theirs. The government says, "We've done that through the bill." Consumers have come here and said: "You haven't done that. You've taken those rights away. For 20 years we've been lobbying for that and now you've taken away that particular right that we believe is needed."
Do you actually believe that eliminating the Advocacy Act and the commission and the rights advisers is a proper balance for those who don't have families, who have been abused, who are abused in a variety of different settings? That this bill takes care of all the worries that people have been talking about for years and still talk about?
Dr Howard: I think you have to recognize that the essence of a health professional is looking out for the interests of the patient. That's our first requirement. In seeking to treat people, we have a very strong commitment to the essence of proper consent for treatment.
You have to remember that the rights adviser process in no way helps that incapable person come to a decision about the treatment that they're being asked to deal with. It doesn't give them any more information; it doesn't give them any advice on how to deal with the particular problem they're facing at that time. The goal of treating people is to provide appropriate treatment, and that's something we do one on one with our patients or with their families. Certainly there are some very rare situations where people don't have any other supports and often they'll turn to friends who can give them some help. But the goal of a health professional is to meet the patient's needs, not my needs.
1720
The Chair: Thank you. Mr Marchese, is that the answer you're looking for?
Mr Marchese: That's the answer you were looking for.
The Chair: I wasn't looking for any answer.
Mr Ron Johnson (Brantford): I want to thank both of you for your presentation. Despite what my colleague Mr Marchese wants to say, there are a number of people who have come forward and supported the government in the initiatives that we've outlined within Bill 19 and in particular about rights advisers. I think that you make a very good point when you say that practitioners are really bound to look after the best interests of the patient.
The problem with the previous legislation was that it was very adversarial, very confrontational. It didn't recognize that practitioners are in fact charged with that responsibility and take it very seriously, that the best interests of the patient are certainly first and foremost. I think this legislation, as proposed anyway, at least recognizes that much.
There are a lot of very, very good points that you brought forward and we'll certainly be looking very closely at in terms of potential amendments. I don't know whether you have anything you want to add, Mrs Johns. Go ahead.
Mrs Johns: I want to talk about your comment on treatment and clause (g). When you look at the regulations that were outlined in the previous CTA, they went a long way to try and explain treatment or what a treatment was not. In effect, a lot of people said that it was too onerous, it took them too much time. We were concerned, when we were developing the definition of treatment, that we allowed some opportunity for health practitioners to actually look at the process and to see whether it was low risk, because for some people it's low risk and for some people it could be high risk depending on what state they're in and what condition they're in. Can you tell me what your problem is with the treatment issue? Can you go through (g) and tell us, given what I have just said about that, what you would like to see different about it?
Ms Samek: Basically we're very concerned that people will confuse the Regulated Health Professions Act that says specifically that controlled acts are high-risk activities and everything else is public domain, and the phrase that's used here is "low risk". We heard, for instance, Linda Bohnen in one of the presentations to the committee talk about pelvic examination, which is in fact an invasive procedure and would be considered to be a controlled activity under the Regulated Health Professions Act, and referring to it as a low-risk activity.
To me, that will leave a lot of confusion in people's minds about when something is low risk or when it is not. We think that the language needs to be very clear. If it wants to refer to controlled acts, that's fine. If it means something other than controlled acts, though, we think it should be spelled out much more clearly because that's the connotation of the RHPA, that's what people have been using and relying on. Anything that's potentially a risk or invasive is going to be a controlled procedure, and that language should be fairly consistent in its use.
The Chair: Thank you, Mrs Johns. You have the pleasure, Mr Brown, of ending our day with your last question.
Mr Michael Brown: You'd be pleased to know I had the opportunity Saturday night to precede Elvis.
My question relates to your comments about clause (g) too. I have a strong sense that this is an important element that you're bringing forward today, having been around when the health professions acts were finally passed and proclaimed. It seems to me that we have a duty in government to make sure that legislation is consistent and provides the public -- not just the public but providers also -- with a certainty and a constant set of rules that we all need to know and that there isn't confusion between legislation. I'm concerned, if I understand what you're saying here, that we may be changing the rules dramatically without knowing that. Would you like to elaborate?
Ms Samek: I guess what we want to know is if someone is in fact trying to change the rules. Is low risk supposed to be a public domain duty or is it supposed to be an invasive duty that doesn't carry an inherent large risk with it but still has some risk and that is why it's being controlled? We want to make sure that the public understands that when they go to health care providers and receive certain kinds of treatment it is considered in a consistent manner. We're not suggesting that it should be the 13 controlled activities, although that makes it easier. We're just saying that suggests to us, that language suggests to us and to our members, and I expect all other health care providers under the RHPA, that they're talking about controlled activities and so I think it will be applied that way. If it's not expected to be applied that way, let us know that so that we can in fact ensure our members have a good understanding of the legislation. We don't want to get into something that's more complex than necessary.
Mr Michael Brown: I appreciate that and I don't know the answer either. We'll have to get some clarifications from the government as we go through clause-by-clause about whether they're talking about controlled acts or not.
Ms Samek: We're just flagging that as an inconsistency is all.
The Chair: Thank you, Dr Howard and Ms Samek, for your presentation. It's appreciated. I'd like to thank the members of the committee for their patience and good humour on this very long day. We are adjourning until 9 o'clock tomorrow morning in this room.
The committee adjourned at 1727.