SERVICE MANDATE FOR DEVELOPMENTALLY HANDICAPPED
ONTARIO ASSOCIATION FOR COMMUNITY LIVING
ONTARIO HEAD INJURY ASSOCIATION
CANADIAN UNION OF PUBLIC EMPLOYEES LOCAL 2191
COMMUNITY LIVING ALTERNATIVES SCARBOROUGH
ADVOCACY RESOURCE CENTRE FOR THE HANDICAPPED
FEDERATION OF ONTARIO FACILITY LIAISON GROUPS
ONTARIO PUBLIC SERVICE EMPLOYEES UNION
CONTENTS
Tuesday 22 January 1991
Service mandate for developmentally handicapped
Ontario Association for Community Living
Ontario Head Injury Association
Afternoon sitting
Canadian Union of Public Employees Local 2191
Community Living Alternatives Scarborough
Advocacy Resource Centre for the Handicapped
People First of Ontario
Parents for Community Living
Federation of Ontario Facility Liaison Groups
Ontario Public Service Employees Union
Adjournment
STANDING COMMITTEE ON SOCIAL DEVELOPMENT
Acting Chair: Miclash, Frank (Kenora L)
Vice-Chair: Cordiano, Joseph (Lawrence L)
Beer, Charles (York North L)
Caplan, Elinor (Oriole L)
Haeck, Christel (St. Catharines-Brock NDP)
Hope, Randy R. (Chatham-Kent NDP)
Malkowski, Gary (York East NDP)
Martin, Tony (Sault Ste Marie NDP)
McLeod, Lyn (Fort William L)
Owens, Stephen (Scarborough Centre NDP)
Silipo, Tony (Dovercourt NDP)
Wilson, Jim (Simcoe West PC)
Witmer, Elizabeth (Waterloo North PC)
Substitutions:
Cooper, Mike (Kitchener-Wilmot NDP) for Mr Hope
Jackson, Cameron (Burlington South PC) for Mrs Witmer
Johnson, Paul R. (Prince Edward-Lennox-South Hastings NDP) for Ms Haeck
Also taking part: Miclash, Frank (Kenora L)
Clerk: Mellor, Lynn
Staff: Drummond, Alison, Research Officer, Legislative Research Service
The committee met at 0905 in committee room 2.
SERVICE MANDATE FOR DEVELOPMENTALLY HANDICAPPED
Resuming consideration of the designated matter, pursuant to standing order 123, evaluation of service mandate for individuals with developmental handicaps -- multi-year plan.
ONTARIO ASSOCIATION FOR COMMUNITY LIVING
The Vice-Chair: Members of the committee, our first group of presenters is the Ontario Association for Community Living. Welcome. We have you scheduled to be on between 9 and 12. I know there are a variety of regional groups that will be with you today and you can divide that time up as you have probably already decided. I will let you proceed in the way you would like. If you would like to start, we are here to listen.
Mr Zwerver: Following up on your comment, what we thought we might do this morning is to break up our presentation by some of the areas that the committee is looking at specifically. We have a number of people representing parents and service providers across the province of Ontario, people who have specific knowledge about some key issues that I know are of interest to the committee.
What we will do at the beginning is we will have an introduction by our president, Nancy Stone. I am Harry Zwerver, the executive director for the Ontario Association for Community Living. Nancy Stone is our president and she is from Niagara Falls, Ontario.
Following that, we will have a couple of people talk about the process of deinstitutionalization and planning, followed by a presentation on family support and community development. That will be followed by a short presentation on resources and the area of employment, especially supportive employment, and then a presentation on advocacy. Then we will have some time for a wrapup after that.
The suggestion that was made -- I am open to comments, obviously, around that -- was that what we would do is take about 10 minutes for each of the presentations and leave about 20 minutes for questions and then move on to the next area, unless of course we get some real juice going around something and that may vary, but that is the suggestion at this point if that meets with your approval.
The Vice-Chair: Absolutely.
Mr Zwerver: Okay. I would like to introduce Nancy Stone, our president, who is going to give you a little bit of background about the Ontario Association for Community Living and then I will make some comments.
Ms Stone: It is nice to be here this morning. I was having heart palpitations on the way up University Avenue, afraid I was going to be late.
OACL is a federation of 119 local associations across the province. They vary in size and in service delivery. We have over 21,000 members just as part of those associations. OACL and our local associations work with and on behalf of persons with developmental handicaps.
The very first local association was organized in 1948 by parents and families of persons with developmental handicaps because of the lack of services in communities. We are very much a grass-roots organization and over the years those parents who began the movement have remained part of it. We have evolved over those 43 years into a sophisticated network of service delivery and a strong advocacy movement to address issues of importance for persons with developmental handicaps.
The goal of OACL is that all persons live in a state of dignity, share in all elements of living in the community and have the opportunity to participate effectively. This goal envisions a society in which the innate value of each one of its people is honoured and protected. The dignity and self-respect that its people enjoy in their respective communities are the result of sharing and shouldering the responsibility of welcoming and supporting all members of the community without discrimination.
This evolves from our "Goal and Vision Statement." This is part of it and I suspect you probably have copies of it. We are presenting issues this morning around deinstitutionalization and the effects of Challenges and Opportunities. The issues around those with developmental handicaps are very much tied to that deinstitutionalization initiative by government, so that other aspects of persons who live in communities are also affected by this document. So the issues affect not only those in institutions, but also those who live in communities. We cannot address one without the other and certainly they rely on each other.
We recognize the importance of smaller dwelling units and options for persons with developmental handicaps, choices and a better quality of life. We need support services in place for people from community and institutional settings. Special services at home is one program that meets a great need for people both in the community and those who are coming back from institutions. I see special services at home as a preventive kind of program and definitely to be considered a primary program in the plan.
We need proper planning, individualized with involvement by the individual, his family, the community and the service provider. We need proper and sufficient resources. This encompasses a great deal, very many items, one of which is wage comparability. We feel this is a very important part of it. In the past and right at this moment in Ontario, those who are working in agencies, in communities and part of the local associations are paid on average about 25% to 30% less than those who are working in institutional settings. We very much feel that we must look at competitive wages for those people for several reasons. I am sure the other people will go into this a little further, but it enables quality programs to operate in communities.
We also need those employees who are now part of the institutional setting and we cannot compete at this point with the wage level they attain within the institutions, but we need those people in communities when the deinstitutionalization plan comes into effect. So wage comparability has many overreaching issues around it. We need proper planning and sufficient support. I think I have said that. That is also related, obviously, to resources. We need day programs and supported employment, opportunities for choice for people, for those older people who choose not to be employed and who might need some day programs and so on.
We have many issues of importance to persons with developmental handicaps. OACL is looking at these issues day by day and they all relate. I think it is very difficult to look at some issues and not to look at all, one of which is advocacy. Your government is looking at that very closely. Guardianship is another really important area. The special services at home I have referred to just a little bit. Education continues to be important to persons with developmental handicaps. Having an integrated education is extremely important. Boarding homes and other forms of residential care that are unregulated are very much on our agenda at all times. We have other issues that probably you will not be touching on, but that we feel it is important to point out.
That is my little beginning process. If you have any questions, I would be happy to answer. Perhaps Harry can add to what I have said.
Mr Zwerver: I think it is very timely that the committee is looking at Challenges and Opportunities at this stage, because we are halfway through the first phase of the multi-year plan. The key ingredient in the multi-year plan is obviously to provide adequate community-based alternatives to people who have been living in institutional settings. As an association and as people who are working with and on behalf of individuals who have been labelled by our society, we continue to be very excited about those possibilities, but we do have a lot of concerns. Some of those are ones that Nancy has already referred to.
I think the core issue really for us continues to be the need to have adequate funding to develop community support alternatives, whether they are in the areas of housing, employment, education or recreation. We have many families who presently are on waiting lists for services in the community. Families are at risk. People do not know where to turn.
The focus for much of what has been happening so far in deinstitutionalization has focused on providing services within a service structure. We also recognize that there are a lot of concerns and fears that are expressed by parents of individuals who are presently living in institutions. They are concerned about the risk for their sons and daughters when they move back into the community. We know the concerns of institutional workers, who are very concerned about what their future employment is going to be about. They are concerned about whether there is a place for them in the system that is evolving.
Those are two legitimate concerns. However, they should not be used as reasons to maintain what is clearly an inadequate system of institutional care. We think all of these are really opportunities to indicate the level of support that is available to truly integrate people into community. Integrating people into community and the whole concept of community living is not just about moving somebody into the community.
We talk a lot, and I am sure you have already heard some of the statistics about how many people have moved from institutions into community and somehow we equate that with community living. Our position is that this is one element of community living, but unless someone is truly integrated into that community, he can be as isolated in that community as he was when he was living in the institution.
It is not about developing artificial alternatives either. It is about how we use the resources, the agencies, the churches, the social clubs, all of the political and social structure of the community, to make people truly feel part of that community regardless of what the label is. We are not just talking about people who are developmentally handicapped. It applies to anyone who has been labelled by society. This is really about, how do you ensure true community living alternatives?
The other theme that goes along with this is really, I think, the need to move from looking at all of this in a context of services to supports, really starting with the person, starting with that person's abilities, that person's skills, that person's interests rather than always looking at the issue of need.
The way in which we develop supports looks and feels very different when we start with the individual and what abilities he or she has rather than when we look at someone by label and say, "Here's another half a dozen people who need certain kinds of services in the community." I think there is a real challenge for us who are in the business of providing services as well as for government which is looking at ways in which to develop and support adequate networks within the broader community as well.
I think there is a real tendency by us in society to hang labels on people. We start with one label and then we add another label to that, so now we have people who are dually diagnosed and we have people who are triply diagnosed. Somehow whichever label it is that the person starts with tends to determine where the individual gets streamed by the service system in our society.
The mental health system does not know how to deal with someone who has a developmental handicap. The services for people who have been labelled developmentally handicapped claim to not be able to deal with the person who has an intellectual disability or has a mental health handicap, and it just goes on and on. I think it is time for us to really look at the person as a whole human being and take a look at how that person can best be supported, regardless of what that label is. I know the government is looking at that in terms of some of the long-term care alternatives, but we believe it needs to happen much more quickly and needs to be part of planning to move people into community.
We believe we need to ensure that people who have disabilities or who have been labelled, like everyone else within the community, must have an opportunity to make real choices and to be able to avail themselves of real opportunities, choices about where to live, where to work, with whom to spend time, to make friends, to contribute, to go to places, to do things, to be paid for work and to continually be able to acquire skills as part of being in the community and being part of community living.
Our existing systems of support, we would suggest to you, are underfunded. Our planning mechanisms are inconsistent. They tend to be underco-ordinated and they tend to still be very service oriented. So it is important for us as we move through this stage of examining the multi-year plan to find a way of bringing this back to focus and to move people out of institutions into something that truly is community and that truly can support people who need to be part of our community and part of our society.
Having said all that, what I would like to do is to introduce to you Eva McPhail. Mrs McPhail is a parent of a young man who came out of an institution. She is going to tell you a little bit about her story and the kind of struggles that has been for her family. I am also going to ask Maureen Brown, who is the chairman of the executive director's co-ordinating committee, to come up here. She is the executive director for the St Catharines Association for Community Living. She will talk a little bit about how planning is working or not working in various parts of the province for people who are moving out of schedule 1 facilities.
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The Vice-Chair: Point of order or question?
Mrs McLeod: Actually to get a sense of the flow of the morning, if I can just take a minute to do that and perhaps just to set our morning's discussion in the context that I hope it can take. As you know, when we had asked that this be a subject to be considered at committee, it was when there was a period of uncertainty about the future of the deinstitutionalization. I think there is less uncertainty now and that puts our committee hearings under a somewhat different context, because I think on all sides there is a commitment to continue with the deinstitutionalization that people believe is important and that it will go ahead, but it is also seen by the government to be equally important that the plans be reviewed. I think all of us would concur that this is always a good idea.
I guess the concern I have is that I would want to see our deliberations in the committee be a constructive contribution to that review and also to the progress of deinstitutionalization. That means obviously we need to identify the problems, because there are real concerns, as you have said, and we can identify those and get a sense of what has to be addressed for the deinstitutionalization to be successful. That will work well, but I know there is a tendency for us all to focus on the problems to the point where sometimes we can be so overwhelmed by the problems that it almost creates a sense of helplessness and paralysis that could almost have a backlash on the deinstitutionalization program itself. I am hoping that what we will do this morning is be able to see what is working as well as where the problems are.
Is that the sense of what you wanted to bring to it? Could you tell us when you think different areas should be questioned on our part, the flow you would like to have to the morning.
Mr Zwerver: Obviously, this is your time to ask us and we will provide you with information as we go along. The suggestion that was made was that we look at a number of components of the challenge that is before the committee starting with the planning process and the process of deinstitutionalization from a number of different perspectives, then move into the area of family support and community development, then the whole issue of resources and employment and then following that with some discussions about advocacy.
It is not our intention, certainly, to focus on negatives. I think what we are wanting to do is to share with you the experience of the multi-year plan to date, to talk about the challenges that are there, as I said in my introductory comments. We are very excited about what has happened, but there are concerns and I think it is the concerns that you as a committee are wanting to focus on because there is an opportunity I believe, at this juncture, to really take hold of some of these and maybe provide an opportunity to shift.
In some cases, it is a very subtle shift and I think in some cases it is really a different kind of emphasis. So my point about the process of deinstitutionalization and moving people into the community is around that. I think we are very excited about people moving into the community. A lot of good planning is going on. It is inconsistent at this point and that is part of doing things differently obviously. At the same time, there are some really interesting things that are happening across the province. The key issue is making sure that we do not accept as a fact that just because you move someone from place A to place B and the place has fewer beds than where he came from that somehow we have accomplished something called community living. I think it is a very critical theme that we will keep talking about as we go through the presentation this morning.
Mr Jackson: Just as Mrs McLeod has indicated, I do not think she can speak for all of us in terms of the lack of concern level with the direction the multi-year plan is going. I have some serious concerns about it and I am not encouraged at all by the hastily prepared response that we did receive from the minister in terms of putting the multi-year plan back on the rails. So I very much would hope that given that the multi-year plan has a time framework to work within, because we are not having the ministry come before us for cross-examination, we only have access to you as the primary agency, if I can use that word, or association that can suggest to us that the benchmarks are not being met.
It is very important that you understand the concerns I have and that the Conservative caucus has. We are going into a recessionary period. We have not received one single statement from the minister with respect to capital commitment. We have only received personal statements of assurance. I have been around here long enough to know exactly what that means. I just wanted to suggest that I do not share completely the view, as Mrs McLeod has stylized it --
Mrs McLeod: Do not misinterpret what I said.
Mr Jackson: I did not misinterpret it. You said everybody was in accord that this is the direction we are going in. I do not believe that is the direction we are going in. One deputation yesterday indicated how pleased they were that the minister had put the plan on hold and done all this research and investigation during the course of 30 days and was satisfied now that everything was back on the rails. I thought that was an incredibly naive statement on the part of the deputation, but it was allowed to just float around as though in fact there was some meaningful review and analysis and the minister and her government were completely satisfied.
I want to stress to you that although I have been a member of the association for 17 years, I know that it is worth while that we have a stronger understanding of your work. I think it is also incredibly important, when I look at the list of people presenting to us, that we look to you to give us the specifics of the areas in which we are not on target with the multi-year plan, without pointing a finger at the previous government or the government before that or the government of the day; just simply, the plan is a good one and where are we along the plan, what kind of capital dollars are required, and if they have not flowed for three years, why have they not flowed for three years, and what has that meant to your families.
I want to put that on the record because I feel very strongly about that and I do not want this to be just a cosy, fuzzy review.
Mr Owens: Just a brief comment without getting into a discussion with Mr Jackson about what he said she said. I think his final point is well taken, that it is up to the consumers to give this committee direction as to where we can assist them, where they feel the process of review should take place. I do not think it was the minister's intent in any way, shape or form to indicate that the review process was finished and, second, that everything was hunky-dory and we will just proceed on schedule.
Again, as Mr Jackson has pointed out, I think it is up to the witnesses who come before us today to indicate where the pitfalls have been, the pitfalls you foresee perhaps around staffing, perhaps around capital budgeting and issues like that.
The Vice-Chair: We are indeed here to listen to what you have to say. If you would like to proceed with other presenters, it is entirely up to you how you want to divide this period. If you want to allow us time to ask questions, again, that is your decision. We are in your hands in terms of how you want to proceed and how you want to divide this time up. Please do what you feel is necessary.
Mr Zwerver: Thank you. We have made a suggestion obviously as to how we might do this and our sense is that within each of those areas, given the fact that there will be a brief presentation, there will be an opportunity for you then to ask the specific questions that you feel will help you in your work as a committee, and if there are things that are not clear, then by all means make sure that you probe and push us. We will either give you our best shot at an answer or, if necessary, we will leave here today, pull together further information and submit that to you if that is in order. We are basically at your disposal to help you with the challenge that is before you.
The Vice-Chair: I will proceed on the basis then that you will indicate when you have finished a presentation and then I will proceed to ask for questions from members of the committee. Please identify yourselves as you come to the microphone.
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Mrs McPhail: I am Eva McPhail. I have come today prepared to talk a little bit about my child Paul. I have brought a picture of him that I would like to pass around.
It is a real honour for me to be here with you today. I would like to share with you some of my experiences as a parent of a profoundly mentally retarded young man named Paul. This is a story about change: change in Paul's life, change in the lives of Paul's parents and family. It is a story of advocacy and how advocacy works to change situations and people.
First, I would like to tell you a little about Paul's early years. In medical terms, my son is described as being profoundly mentally retarded, hydrocephalic and partially paralysed. He is purported to be epileptic. He is prone to urinary tract infections, prone to tonsillitis and prone to eye infections. He is anaemic, has chronic gastric upset and some known food allergies. He is doubly incontinent and has his own seating apparatus, as he has no use of his lower limbs. He is tactile defensive, hypersensitive to hot and cold, he is visually impaired and has no formal mode of communication. What does this really mean?
To his family, which consists of a mom, a dad, an older sister, a twin brother, a younger brother and two grandmas, Paul is a medical miracle. At birth, he was six weeks premature and weighed four pounds. He was the first-born of twins. He was given a 50% chance to live. At two weeks of age, he suffered a petit mal seizure. The doctors discovered he had contracted meningitis, which led to hydrocephalus. They gave Paul an optimistic 30% chance to survive. He survived.
By age three, Paul had undergone more than 39 brain operations to install and then correct malfunctioning shunts and tubes. At that stage, his doctor refused to operate any further and he suggested that Paul might live three months longer. To facilitate a final separation for us, his family, the doctor suggested that we should place Paul in a chronic care nursing home. The doctor phoned to arrange these services for us.
Surrey Place Centre contacted us and strongly urged us to place Paul immediately in a care facility. After months of agonizing decision-making, I finally agreed that Paul's name could be referred for placement. We then learned that Paul's name was on a waiting list of 200 other young people, and perhaps a place would be found for him within a couple of years.
Paul was first placed in a nursing home near Barrie. On visiting the home, we were appalled. The building was small, cramped, overcrowded and smelly. Most of the residents were completely bedridden and none were expected to live long. Visiting Paul was almost worse than never seeing him again.
Through a friend of my mum, we located a children's home close to our native town and we were able to transfer Paul there. Throughout Paul's many medical crises and placement process we, the parents, felt we had no control over any of the decisions. I was regarded as stubborn and unco-operative as I refused immediately to place my child at the whim of the professional.
Paul moved to Sunnydale Nursing Home in Sunderland in 1975. He was six years old. This seemed to herald a time of peace and happiness for all of us. The home was large and airy. We saw few terminally ill children of the 72 there. The children seemed happy, clean and well cared for. The staff were kind, caring and open to sharing with the families. The staff treated Paul as a normal boy and they loved him. They welcomed visits from the family at any time. This home included community volunteers, and the children here were included in local parades, fairs and musical events. We visited Paul often and we hoped that he could stay there for ever.
In 1981, we were informed that the government had allocated funds to provide extra services for residents of special care homes. Paul was eligible and thought to be a good candidate for these services. We were asked if we could be included in this program. My husband was against Paul's taking part in this program. He felt that it was too late for any meaningful change to take place, too bothersome and a senseless waste of time and effort for such a severely handicapped individual. I, on the other hand, was enthused and interested to see programs developed for my child. My husband and I did agree that Paul could be included in this program on condition that we had the right to withdraw him if we felt the activities were inappropriate or harmful for him.
The triministry program, as it was called, was very rewarding for Paul and for us. The experienced, trained personnel of this program were eager to support any and all suggestions for Paul's program. They seemed optimistic that programming would benefit and change Paul. After several weeks, the behaviour therapist was able to determine that Paul had a range of thought processes and could adapt his behaviour to cope with new and different situations. Paul showed strong preferences for some people and was strongly attracted to male voices. Paul was very aware of routines and change in them.
Over the next three years, Paul again became a happy, active boy. He learned to feed himself. He went swimming weekly, and my mother was able to accompany him. He was taken out to activities in the community. He appeared more alert and involved in his environment. He began to respond immediately to his name. He began to track people and objects accurately with his eyes. He began to tease his care givers. He actively involved others in his life by reaching out and grabbing them and often not letting them go without a real struggle.
The triministry program changed us as well. We were kept well informed about new programs and routines, and invited to open-house occasions. We knew whom to call if we had a concern. We were encouraged to visit at any time, and co-operative planning sessions for Paul were arranged to fit our convenience. Both of Paul's grandmas became actively involved. My mother went swimming weekly with the young people and became very attached to them. Both grandmas made afghans, quilts and picture books for the day centre.
In 1984, a residents' council was formed at Sunnydale and my husband and I participated. Later my husband served as chairman of this council. In 1985, a school program commenced at Sunnydale under the direction of the Durham Board of Education. Fifteen students attended in-house classes. This program in our opinion was inferior to the triministry program. The board neglected to inform any parent of its intent to educate their child. I found out that Paul was attending school, as he was no longer able to go swimming. He was in school from 9 o'clock till 3 o'clock. He could not go swimming. The board assessed these children without parental permission to do so and proceeded to program these children without parental consent. Clearly this was an infringement of my parental rights and an abuse of the law.
The teachers of these classes were inexperienced in educating this population. Supplies were virtually non-existent for months and these exceptional students did not receive services equal to other identified exceptional students in the community schools. The school staff refused to share pupil information, resources or expertise with other professionals. We, the parents, were strongly discouraged from being involved in a meaningful way with our child during school hours. Paul did enjoy his time in school but his life skills learning dramatically decreased.
These two diverse services to our son have clearly shown us how systems should function to increase opportunity for the individual and his family. During this phase of school board involvement in Paul's life, we at least had continued reliable home care for him. Worse was to follow. In 1986, we learned that all homes for special care were scheduled to close. We were devastated. Where was Paul to go? What was Paul's care to be?
Friends and counsellors from the Oshawa and Durham Association for Community Living and from the Ontario Association for Community Living encouraged my husband and I to visit several group homes and associate families to see if these options might be suitable for Paul. We soon realized that all agencies had long waiting lists and many were unable to provide the intensive care needed for Paul. We established the notion that a group home would likely be a good placement for Paul, but there was none available to us.
Again, with the support of association friends, we encouraged other parents to join with us to develop a policy and program option for a non-profit organization to serve our own handicapped youngsters. Twenty-four-hour-a-day care would be provided, plus an in-house program of day activities would be arranged for each child. Twenty-one sets of parents worked for many months through hours of great discussions to form New Beginnings. This is an agency now operating two group homes and servicing eight young people here in Metro.
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I felt tremendous hope and optimism for this opportunity to again become meaningfully involved in my son's life. I expected Paul to live in a safe, secure home with quality care. I expected Paul to have meaningful day activities in the home to further develop his life skills. I expected Paul to go to school. I expected or at least hoped that Paul would have regular recreational outings.
Paul moved to ChesterLe home on 30 June 1989. Paul was admitted to school later that year and continues to daily attend a regular high school, Sir William Osler, in Scarborough. Thus far, Paul is the only such severely handicapped youngster educated by the Scarborough board in this manner.
Last summer, Paul attended a day camp for several weeks. The Scarborough parks and recreation department operated the program, which included a daily swimming session, group activities and weekly jaunts to community activities and events. We have been pleased to have Paul closer to home. We enjoy the opportunity to visit him regularly and to bring him home for day visits. We have started to go swimming with him regularly. We feel a closer bond to Paul now and we enjoy our times with him.
Changes have occurred for Paul. Some have been positive, but some have caused severe stress and anxiety for his parents and his siblings. Paul's care in the group home has been questionable. At times the home appears clean and tidy, at other times it is appallingly dirty and unkept. Recently Paul suffered a severe grand mal seizure. Paul's neurosurgeon determined that Paul had not been receiving his prescribed daily medication. This unnecessary trauma occurred because the staff are untrained in medical procedures and are inexperienced care workers. There is no legislated certification required to be a care worker. Thus far, Paul's in-house activity consists solely of watching TV. This staff has no programming vision or training.
I am personally frustrated, as Paul is now 21 and he will be demitted from school in June and there are no other educational options available for him. I am personally frustrated because I have been unable to locate a life skills program or a workplace setting for Paul in all of Metro.
I feel the policy to move residents from institutions back to the community is a great one. These youngsters can thrive and further develop in smaller homelike settings. These young people can become reinvolved with their families, neighbours and communities in meaningful ways.
As you can see, Paul's family relishes their involvement in his life. We want to see our dream for Paul become a reality, but this dream can only become a reality with strong, determined, creative people ready and willing to put their shoulder to the wheel. Changes have occurred for Paul and his family and I am still enthused and stimulated by the great potential we have to make meaningful changes happen in the lives of our most vulnerable citizens.
Mr Zwerver: That is obviously one parent's story of the process that has led from a very segregated, institutional model to living in community, with the concerns that are very much theirs, as we all know. Part of our challenge now is how we deal with those kinds of ongoing concerns, even when someone lives in community and is supposedly part of community.
What I would like to do is to ask Maureen Brown, the executive director for the St Catharines association, to reflect the other side of that, which is really some of the critical issues involved in planning for individuals who are ready to move out of institutions, and from an agency administrator's perspective to reflect on some of those in a succinct fashion, and then we will open it up for some discussion.
Ms Brown: In listening to Mrs McPhail's presentation, some of the things came to mind that I think were raised by the members today. One of the biggest concerns for community administrators is the lack of consistency between the areas and the regions. If you have a good relationship with your area office, you usually can work around getting the necessary funds to bring the individuals back to your community. Depending again on the region and the region perspective, some of my colleagues in other areas are not as lucky and have a difficult time trying to meet the community's needs.
Mr Beer: Excuse me, I am not clear. When you talk about the region, do you mean the regional government or the regional office of Comsoc.
Ms Brown: The regional offices of the Ministry of Community and Social Services. We would like regional government involved.
In the document there were supposed to be local planning groups, and many of the areas have formed local planning groups in order to incorporate the kinds of things we need to bring the individuals back to our communities. But these planning groups many times are not even resourced. It is done on an ad hoc basis. Some of the groups do not get support from their local ministry offices. I happen to be fortunate and have a ministry office that is very supportive, but some of my colleagues complain about the fact that they do not feel their needs are being listened to.
The other area we are very concerned about is the lack of support in the community associations' infrastructures. Most associations have tripled, quadrupled in size since the multi-year plan has taken place, and many of us are still operating on the same models we operated on five, six, seven years ago, yet we have a lot of staff, we have a union, we have parents who need our support, and we do not have the infrastructure in place to run basically a business. I think these have to be looked at.
We are concerned about how the dollars are accessed. Many times now when an individual is identified to return to the community, such as St. Catharines, where I live, we have to prepare a proposal for the ministry that would encompass an actual plan, such as a group home. So if I have two or three people of similar needs or likes then I would put in a group home plan for those people and attach dollars to some day program or other supports those individuals need. We seem to forget some of the other supports. Many of these individuals come with behavioural needs; they need school support; they have medical and physical needs. I think it is very important that we try to look at the individual; if he does not actually fit into something we currently have, let's try to be creative. But we are locked into the system now and I think that is sometimes not very good for the people. That is one of the things we get discouraged about, very much so.
Certainly the wages are improving, and certainly some of the things Mrs McPhail mentioned about the untrained staff is improving because of the fact that we are able to pay a little more and we are able to keep consistency. In the cities like Metro it is probably a lot more difficult than in a community like St Catharines or the Niagara region. But I do think that is improving and we thank you for that. We have a ways to go. Of course, our staff needs more training and support through the Ministry of Colleges and Universities to teach our people how to look after these high-need individuals returning.
Those are some of the bullet points for myself as an administrator. Again, other areas experience different things, but I would be pleased to answer any direct questions at this time.
Mr Owens: First, I would like to thank Mrs McPhail for her very frank description of the problems she has had in dealing with her son Paul and the system as it exists today and yesteryear, which is not all that far away.
I would like to talk about some of the supports that are in place for families and perhaps where you see that lacking. You describe a fairly horrendous process at the beginning of your time with Paul, when he was essentially deemed only prepared for palliative care as opposed to developmental care. What kind of supports are in place to deal with the kind of intrafamily tensions that kind of situation can bring on? You mentioned a disagreement between yourself and your partner about which direction that treatment could take, and I am sure it was not as polite and succinct as you described it today. I am concerned about that, about the kind of services that are out there to help support families through decisions like that.
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In the later part of your presentation you talked about the current group home situation and your concerns over staff training. I wonder if you or your group are prepared to make the kind of recommendations of what you see as being needed to promote staff training to bring them up to the level of competence you feel they should be reaching as standards of practice. In speaking with staff people who are currently working in these group homes, I know they share your concerns. It is not just the parents who are concerned about the level of service that is being provided; the staff is deeply concerned about whether the home is cleaned or whether your son or the many other children who are in these homes are being provided with a stimulating and challenging program.
Mrs McPhail: I do not know what the support services are today for parents going through a crisis. When we were first advised to place Paul, the doctor made the decision, phoned Surrey Place Centre, which was the regional placement centre for all the children in the Ontario region, and they came out. They said to us, "We think your child should go to an institution." When I said, "I need time to think about it," they were quite annoyed, because they were the professionals, they knew what was best for my child. I do not know whether that has changed.
Shortly after that, the Scarborough Association for Community Living invited me to some meetings so that I could meet other parents who were dealing with handicapped children in the home, but their needs were different from mine. I did not meet at any time another parent who was placing his child in an institution. Until we ourselves decided that our option was to meet with parents to discuss bringing our child from an institution back to the community, I had not met another parent in Sunnydale Nursing Home with the same needs and concerns I had. I am not sure if that is different now.
Mr Zwerver: In fact, the next two presenters are going to talk about the whole area of family support and what is happening currently across the province, from both a parent perspective and an agency perspective. That might help answer the other part of your question.
Mrs McPhail: For the staff training, I would like to see some legislation in place. I am a teacher by career and I cannot teach in the public school unless I have good quality certification. I am not sure why care workers who are looking after the most vulnerable citizens do not have to have some kind of certification, because there certainly is some essential training that must take place for them to work in these group homes.
Mr Jackson: Ms Brown, maybe you could share with the group the last two homes you were able to open, or three -- how many homes have you opened in the most recent --
Ms Brown: Four.
Mr Jackson: What was the ratio of community based to institutional based?
Ms Brown: Two community and 20 facility.
Mr Jackson: I suggested to the minister yesterday that in the original document of the multi-year plan there was the matching approach, that we would assist those families with children in the community and those with children in institutions and we would go on a matching program, yet I am tracking more specifically the fact that it has become an exclusively institutional-based transfer. Can you share with this committee further insights in this area? In my view, it is a deviation from the multi-year plan. I am also concerned that it has become a policy of the government and, if not checked, will continue to be considered the norm once we are past these hearings. I have one other question after that.
Ms Brown: As far as the matching is concerned, for the community agency I did not think that was in place any more. About three to four years ago we were told that really was no longer valid, that the dollars community agencies would get for development would be attached to individuals currently living in schedule I facilities and nursing homes throughout the province. When an individual is identified, such as in the homes we were, whose home might have been in the Niagara region or the St Catharines area, we go and meet these individuals and try to match them with individuals of similar needs so that the home can be fairly supported by like staff. We can squeeze in the odd community individual.
I agree that it is a crisis for us. In St Catharines alone, I have a waiting list of 54 families who want their sons or daughters placed yesterday. They are saying: "You're bringing back these people from the institutions. We know their home community is St Catharines and we applaud you for it. However, that doesn't help me. I'm 75 years old and what am I going to do about Bill or Joe?" I say, "I realize that and I am trying to do my best."
It is frustrating for all local administrators, the fact that we are not able to support the families who have for whatever reason been able to keep their sons or daughters at home. We do, though, firmly support deinstitutionalization, whether it be the citizens of the world or people who are coming back. But you are right that in the homes we have opened up, there have only been two community people served out of the 20.
Mr Jackson: That is an experience I have heard from other groups as well.
I have another quick question. It has to do with the bump funding, which concerns me. The first point -- we did not have time to ask the minister -- is that we have not received our transfer payments for transfer payment agencies in this province, of which you are one. It has never in the history of this province been this late. Having said that, bump funding was delayed several months from the time it was first announced. We now have received the bump funding and I am hearing from the associations that it only partially addresses pay equity, as well as some other issues, but it is not really moving the salary grid to the extent we had hoped. Could you tell us what your experience is in your association? We will certainly get an opportunity to hear from Harry with respect to his global view, but I would like to take this occasion to ask how it has affected your agency.
Ms Brown: It has been really good. Yes, it was late, but with the election and things, we understood that. Our staff really did not, but we just kept holding them off. Basically, it is retroactive until I September, so no one has any dollars yet. We do not have the dollars; I just have a note saying how much I got, so I am just hoping it is going to come. But it has made some difference to the staff. Yes, they still are being paid less than their counterparts at schedule 1s. I happen to be in an area, though, where there is not a neighbouring schedule 1 facility, so it is not as apparent as for someone who is in the London area, say, where they are actually neighbouring right by someone. Our competition is mostly with school boards and things like that, community colleges, which can pay more. But it has made a difference and I am hoping it will continue to make a difference to try to attract the kind of individual Mrs McPhail is alluding to, who can work in our homes, who has the expertise and experience needed to look after these vulnerable people.
Mr Jackson: I wish we had more time. Thank you.
Mr Beer: I have a couple of areas I would like to talk about, but are we going to be coming back to the funding? Is there another place where you would, in the global sense -- because I appreciate Cam's question and I think it is important that we see how it is working locally and globally. Were we going to be coming back to that?
Mr Zwerver: I was going to take an opportunity near the end to pick up on that issue, but we can do it here as well.
Mr Beer: Fine, because I want to take advantage of having a parent here as well as people who come from individual group homes or administrative settings, to get a sense of what it is you go through; then that will help us as we move to the global.
Mrs McPhail, I found your voyage of discovery, if I can put it that way, extremely well done in terms of the humanizing of the process and the different kind of points along the way where, as a parent, with the expectations any parent has for any child -- we all know all of our kids have varying levels of ability; it is just that here we are talking about some who are perhaps more obvious and more in need of assistance.
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I was trying to get a sense of some of those critical places where as a committee we might be able to help in moving the system forward or making that system, I think as you and others have said this morning, more responsive to individual needs. I want to make sure that I have understood some of the things you have said.
I take it that you see the concept of the group home as being essential in this framework, but that group home -- your comments about New Beginnings and some of the positives and some of the negatives there, clearly that the requirement of appropriate support, whether in terms of the kind of training the people who are working there have, the funding that is available and just the setting, the sense of home and community.
With that program, in terms of the involvement of parents -- and I think this is one of the themes frankly last week we were dealing with in children's mental health issues and in a lot of these areas we hear that comment about, as a parent, feeling blocked at times by the system. I think you said at one point you had to be obstinate and quite frankly I find that in a lot of these areas that is what it takes. I am sure that is not the way you wanted to necessarily do it, but it is the only way that you found that you could get through.
How do you see the parents' role as we go forward? What kinds of things might we be saying that will strengthen the involvement of the parent in the development of the services, of group homes, of other kinds of settings that perhaps we ought to have? How do you feel right now about parental involvement and what are the things that need to be done so that, in your view, you would have a much greater say in what is going on?
Mrs McPhail: As parents, I think we should have the full support and encouragement to be involved in every area of our child's life. It has been difficult for us since Paul moved to the group home because it was a group of parents that developed this idea. Now I think we are kind of looked on as, well, we are not professionals so we really do not understand the system still and we are too emotionally involved so we really do not know what is right for our child, which I do not agree with.
I still have expectations for this child, as much as for my other three children. I feel that I should be totally involved in this planning for my child, an indication of where he is going, what support services I would like him to have and what are the essential services in the community. I think parents have a lot of creative ideas to offer here.
Mr Beer: Where does the professional come in in terms of your own setup then? How do you, as the parents, relate to the professionals and how does that work, in your view?
Mrs McPhail: I would like to see a professional who is experienced, well-trained and knowledgeable about services for these children and has a visionary view of it to help us develop these ideas more fully. I see that as a very important part. I see it as an important part for the staff to be involved with parents too and get to be like a small family so that they know and understand our values and our ideas as well as we would understand their values and their ideas.
I really see it as a visionary person leading a group probably that has some new ideas and different ideas that he has seen at work in other areas who can share those with us.
Mr Malkowski: I have been very impressed with the presentation in terms of explaining your experiences, what you have had to go through as your child has grown up and the struggles you have had to endure.
I am wondering, at the very beginning, at the time, did you receive any parental support relating to the grieving process as well? I am wondering if you had opportunities to meet with consumer groups to get them to share their experiences with you in terms of what they had to endure through the system.
I can see from what you are saying that most professionals will advise parents on what to do, but often the consumer groups or advocate groups are not involved in terms of offering parents their perspective on their experience. I was just wondering what has been your experience in terms of consumer involvement.
Mrs McPhail: I have not received much support from community groups or individual citizens, perhaps because our experience is very unique. I have received support from friends that we have made over the years in the associations, personal friends that I have made through my school years. I actually myself have gone for counselling sessions. The counsellor said to me: "I do not understand this area. We do not have people going through this. I cannot advise you. I can only tell you what has worked in a general sense for other people."
This is a chronic grief system. It is not something that stops. There is no end to the story yet, so I cannot get over the grieving process. I have to continue through and struggle with it to try to make the dream still a reality for us. This is a difficult situation to deal with personally. We have that emotional issue to contend with continually while trying to contend with the business aspect of getting on with our child's life and our lives.
Mr Malkowski: Do you feel it is important for parents to receive emotional support from the group at the very beginning, as soon as the child is diagnosed, as well as getting the consumer perspective as soon as the child is diagnosed? Do you feel that those two issues are important?
Mrs McPhail: Yes, very much so.
Mr Jackson: The only reason I ask this is because for years people have asked me the question, "Where do I get help, Cam?" When I was a school trustee it was through that vehicle, and then here at the Legislature, but I find an overwhelming number of people who are not members of the local association. They vary in terms of having their own healing circles. They vary in terms of having their own in-house professional counselling or group counselling. At what point did you join an association and what was your experience?
I know that is a delicate question in one aspect, but I am sorry, I am a strong advocate of joining associations and building those healing circles within them. I wonder at what point you joined, and I think that is what Mr Malkowski is getting at. What advice could we give that might focus in that area?
Mrs McPhail: When it was first suggested that we would have to place my child, as I say, we were involved with the local association. I felt the people there really tried hard to involve us, to give us some support, but because their situation was so different, they were not having to deal with placing a child in an institution, I could not strongly relate to them.
So we did not become involved with the local association again then for many, many years, not until I knew my child was coming back to Scarborough. Then I became reinvolved and am a member of our local association.
I think they are very supportive people. They are terrific people. But because they still have not had the same, similar experience as we have, they have not been able to support us emotionally. The people who are now supporting us are the other parents in our group home.
Mr Jackson: That was my point.
Mrs McLeod: I was just wanting to comment before asking a question that I sometimes think if we go back, and your experience goes back such a long period of time, we do not always have the knowledge of what was in place then and how much that in fact has changed. You really were pioneering towards a very different kind of environment for your son. We have come a long way, although there are still problems we have to identify.
If I could come specifically to the question that I think Mr Jackson was beginning to address with his first question, that is the issue of support services that are there for people currently in the community alongside the supports needed for the deinstitutionalization. I was a member of the cabinet committee when the deinstitutionalization plans were being further considered. I know that there was a very strong recognition at that time that there were waiting lists of people in the community needing support services and that those had to be addressed. They could not be put on hold while the deinstitutionalization plans went forward.
I guess one of the concerns that I have certainly continued to have as I talk to people in my own riding is whether or not somehow that commitment did not become translated into the services that were actually provided in the community, whether or not that sense of commitment had not been conveyed, whether or not the expectation that the community needs of people would be met or whether it was funding that had not kept pace, I am not sure, but I wonder if you could just comment on whether or not there was even that recognition that the support services had to be provided for people in the community now.
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Mr Zwerver: This might actually be a good time to move to our next two presenters, because their whole focus is on the issue of family support and support in community. If they can take a few minutes to outline that, it may make it easier to kind of get a focus on where some of this needs to go.
The Vice-Chair: I do have two other members who wish to ask questions, perhaps on the previous set of discussions. We should probably proceed with those and then move on to this other area. Is that okay?
Mr Zwerver: That is fine.
Mr Johnson: It is unfortunate that often we cannot ask these questions more timely. With regard to the group homes, I was wondering who owns them, what it costs to fund them and who pays for these costs.
Ms Brown: It depends who owns them. In our association, we own the houses. There have not been any capital dollars from the ministry in the last few years, so our association has fund-raised for the down payment and then the principal and interest is debt-retired through the operating budget that you receive in order to fund that home.
The cost: Again it would depend on your area, what you would have to buy for a home. The homes are like homes like you or I would buy. Basically, the operating budgets are dependent again -- and this goes back to having to take the individuals from the institution and not bringing in community people. An individual from an institution may come with $50,000 or $60,000 annualized. You put four or five people into a home, you staff it, you buy food, you buy clothes, so you end up with an operating budget somewhere around $200,000 to $300,000, less their family benefits allowance.
Mr J. Wilson: I just have a short question for Mrs McPhail. In the group home setting, when there were problems with Paul receiving his medication properly and on time, was that more a function of improper service or not timely service, or would those care givers have required sort of paramedical training?
Mrs McPhail: I think they require more medical training. I do not think they understood the importance of his needing this medication daily and at specific times of the day.
Mr J. Wilson: I think that is important when we look at the training of care givers in the group homes in the sense that there would be a real cost factor there if we were to provide paramedical training, and that is why it is important. But in your case it would have helped a great deal.
The Vice-Chair: Let's go on to the next presenters.
Mr Zwerver: The next two presenters will be Doug Cartan, who is the executive director for the Brockville Association for Community Living, and Michelle Friesen, who is a parent from Windsor. They are going to take a few minutes to talk about what is presently happening in the province in the whole area of family support and community development. I think that will get at some of the questions hopefully that Mrs McLeod was asking and other issues that I know some of you would like to address.
Mr Cartan: Thank you very much for the opportunity to speak with you today. This aspect is extremely important to us and I want to give a brief introduction to it before passing it on to Michelle Friesen.
I also want to say that no evaluation of the service mandate for individuals, or in fact the multi-year plan, can be complete without an examination of what has been put in place of the institutional options that people had to choose at one time. If we have any expertise to offer -- and I hesitate to use that word, but between Michelle and myself we have significant knowledge of some of the flagship programs that the government has put in place to support families and hopefully to provide other kinds of options, so we have an extreme amount of knowledge on that between the two of us.
One of the programs we wish to talk about today is called the special services at home program. It is mentioned again and again as a flagship program replicating the principles of the multi-year plan, mentioned when the plan was initiated in 1987 and mentioned in the most recent speech by the current minister. We want to talk more about how that is or is not meeting the test of the supports that need to be put in place for families, given that we have curtailed the institutional options for children and other people, which we applaud. It is those kinds of questions that we hope we can get into even more personally in a dialogue process.
At this time I wish to turn it over to Michelle Friesen, who is a parent from the Windsor area, to talk a little bit more about her experience of supports at home and with her family.
Mrs Friesen: I will just tell you a little bit about myself before we get going so you kind of know from where I am coming. I am a mother and I have four children, like Eva, from ages 3 to 13 years old. I brought pictures too, but mine are big enough to hold up. As I am holding them, I will just tell you a little bit. One of the things I want to talk about is the idea that all of us are really busy within families. These are my two oldest. They are 12 and 13 years old; and my two youngest, 9 and 3. David, Nicole, Lisa and Matthew. I guess I am here because of Lisa. This is my daughter Lisa, who is 9 years old.
My family does keep me very busy, between the two pre-teens and their rebellion and all of their after-school activities and running around with their friends; between my daughter who is 9 and her wanting to be with her friends and enjoying their time together and all of the things we do with her at home that she enjoys, and between my 3-year-old, of course, who tries to get a little time in there some of the time.
I would like to tell you a little bit more about my daughter Lisa. As you can see, she has beautiful long brown hair and brown eyes. She loves being with her friends. She enjoys going to school, smiles widely. She is one of the tallest kids in her class and that was discovered by laying her on the floor and having the tallest kid in the class lay next to her. She has a beautiful smile and a contagious laugh, and like most 9-year-olds, as I said before, loves being around other children. She is at the same school as my other two children in our community. I live in a rural community in Essex county outside of Windsor.
In the past, I guess over the last 9 or 10 years that we have had Lisa, there have been people who would describe her to you differently from what I have just described, and I am going to sort of go over some of the things that we have been told. To the local association, she was once a client. As a client, she has been part of a case load. As part of various case loads, she has needed all kinds of various therapy -- physiotherapy because she has cerebral palsy, visual stimulation because she is cortically blind, intellectual stimulation because she is severely developmentally delayed. So we have a severely developmentally delayed child with a microcephalic brain who has cerebral palsy, seizure disorders, she is visually impaired and she cannot do anything for herself.
Yet my first description of her as being a happy child who enjoys her friends, I think, is more welcoming, and I start this way by saying to begin with, when we label people, we set up barriers. If I were not to have introduced my daughter to you the first way, I think you would have had a harder time sort of even thinking about getting to know her.
The children in her class and the kids in our community who come into our home do not know what any of those words mean, but they know exactly what she needs, and nobody has ever given them that list to describe her. They know that she needs somebody to be her eyes and that she needs somebody to be her hands and that she needs wheels to be her legs and they know what she likes to eat, what she likes to do and they know how to communicate with her even though she cannot speak and they know how close to hold up something so that she might see it, and they never got a diagnostic list of labels to tell them that.
One of the things that happens as our kids enter the system as infants with all of these labels is that professionals start to take pieces of them. The physiotherapist gives you this program and you are supposed to do that, and somebody else says, "You have to do this to stimulate the eyes," and somebody else gives you a feeding program, "It is taking an hour at a time to feed your child and this is the way you are supposed to do it." Pretty soon you have tons of agencies and professionals in your life telling you, each of them, what you are supposed to be doing, and nobody is looking at, "Here is a young mother who has a child with high needs and two other toddlers in the home, and how the heck is anybody supposed to get any of this done anyway, because it is totally impossible."
Nobody ever looked in the earlier years at the family, the unit of the family and what was there and, "What does the whole family need, what does the child need in relation to the family and what could we do to support that?" Because it was difficult and we were not coping, the first advice we would get was, "Why don't you take some relief at the neighbouring institution?" That was all there was at the time. My daughter was 16 months old. When we went to the institution to visit, one of the things that really struck me was that that particular institution was mainly filled with adults. There was not a crib in the place. There were hardly any children, and reams of people who had to be helped to eat. I said, "How long do they get to eat?" "A few minutes each." My daughter needs an hour and a half or she will starve.
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Of course we said no way could we manage that, but I have to say that had not a program come into place within the next six or seven months we could not have managed any longer. We had reached the breaking point, but special services at home was developed in the meantime and people were plugged into our home to help with our daughter.
That was not the be-all and the end-all for us, however, because as the years progressed it was a constant battle and struggle to convince the professionals in the community that it was something that needed to be ongoing, that it was something we might have, in our case, needed a lot of. It was a constant re-educating of the people in our community around that. They were always looking at the rules and regulations of what the program or the agencies wanted to do.
That is the second thing I want to come to, is that it is a barrier to families and support to families. The first one would be the labels and the programs and not looking at the family as a whole and holding that family in high esteem. The second would be rules, guidelines, agency, association, whatever kinds of stringencies that are put on families.
An example I am going to give of that for us was that we needed relief for our daughter. Later, as years went on, there was a relief bed in a neighbouring group home. However, we did need a lot of in-home help as well. One of the conditions for us getting help in the home is that we would use the group home a certain portion of the time for relief. That ended up being quite a headache, because we had to train staff. Lisa would come home dehydrated. They could not feed her, they could not give her a drink, and on and on and on. It got to the point where we were raising such a stink -- and I had many of the same labels that I think Eva does -- that they said, "Fine, we're going to give your child somebody to take care of her for 12 hours a day in the group home," I thought, "Why can't I have somebody at home 12 hours a day?" but that was not the way it operated.
I am only saying this to say this still goes on. Because the services and the systems are in place to do things in a certain manner, families who are able to identify what they need and want are always caught in the middle; they have this over here, but these are the rules and we have to do it this way.
The third thing I would call a barrier is the way professionals listen to families. They do not always listen to families. The people who are running some of these systems and the people who are out there are not hearing what families are saying. The families are saying: "This would work for me. All I need is an individual plan and a little bit of money and somebody to support my ideas and help me in my own community, then a lot more could be accomplished." I firmly believe that a lot more energy has to go into the community people live in, so that the people at the library and the park and that kind of thing can get used to our children. That means if people want to keep them in the community, individual life dollars have to stay with those families. That means special services at home.
The families I have been involved with range in age from parents of infants to adults. The parents are saying that this is what is working for them, this is what is empowering them and this is what is helping their families, so that we are living by our own rules and not by the games of so many agency- or association-set-up programs. What happens when all of the resources are put in the pots of agencies and services? As families, you become dependent upon those agencies and services, because that is where the resources are and you have to follow their rules. I think it is dangerous for us as a society, as a province, to continue to make people dependent. Families want control, as Eva said. Families want to be empowered, and oft-times they do need somebody who will listen to what it is they want, support them to get the resources and, if that is what they desire, help them to operationalize it. They need choices.
Harry asked me to go quickly and to only take five minutes, so I think I might be leaving a couple of things out.
I want to say that I am involved with the Windsor-Essex multi-year planning committee as a consumer. I have been on the committee for a couple of years. I think there has been a lot of growth in terms of that particular planning committee looking forward, and a vision and the ideas are there. However, I have the same concern that it appears that that planning body or that community is also strangleheld because of the systems that were in, when comments come up like, "We just have to wait and let it evolve and it will change."
More and more families push for this, and I am saying we are out of time. There are people now who do not want to get into the stream of the existing systems and agencies. They want a different approach. They want the resources to put in place what they need for their kids. They want a co-ordinator or somebody who will listen to them. In our association right now people are so bogged down with budgets and staffing and meetings and doing a good job with all the other stuff they have to do that they do not have time to do that, there is not the staff to do that. There are a lot of parents coming together in Windsor and they are saying the same things: "Why can't we phone one place? Why do we have to phone all these different agencies to get what we need? Why can't we phone one person who can help us and why can't we put in our own plans? The program is very successful, but it has to go further.
Ms Stone: I would like to point out, too, that this is a very articulate parent. She is the kind of parent who makes things happen for her child. But what of those who have trouble with language and do not have the education to be able to go forward with confidence asking for what they need? Those parents are left. I think both of us would agree that some attention has to be paid to the universality of this program being available to everyone, not to those who are more articulate or are able to express the needs of their children better, but available to anyone who needs it, regardless of handicap of the child.
Mrs Friesen: I think also that if some parents do not come forward and say to the professionals that they need these same things -- they do not always feel confident to do that -- there is the mistaken assumption that everything is okay. Yet parent to parent, over and over again, the same thing comes up. Some of those parents just are not comfortable with coming forward, but they say it to each other and they say it to me and they say that is what they really need.
The Acting Chair (Mr Miclash): Would you be comfortable with some questions?
Mrs Friesen: Doug, do you have a wrapup?
Mr Cartan: I think questions will be more appropriate at this time.
Mr Owens: Once again we have, direct from the source, comments that I always find more helpful in crystallizing issues, especially situations like this, rather than just the "professionals."
The issue I would like to address is twofold. One is respite care and the other is creativity in the provision of services. In terms of attacking waiting lists, I need to get some kind of direction on the level of respite care that might be needed within the community. It is my understanding that some facilities have only one bed available for respite care and that the need far exceeds that one bed per weekend. I wonder if you could tell the committee about your experiences in trying to obtain respite care and perhaps some of the experiences of some of your fellow parent contacts.
The second question is on creativity in the provision of services. I am quite interested in hearing more about that, in that it seems that once we have one model set up to provide services we stick with that model for better or for worse. I wonder if you could make some recommendations to this committee on how you feel the government could be more creative and perhaps even more proactive in providing services such as care at home and many of the other services that you find both useful and also required for your child.
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Mrs Friesen: I will start with the respite, and I can tie a little special services into that, too. I served on an interagency committee for a year or so in our community that was looking at respite care needs of individuals with higher need. At that time, the only opportunity for respite was in a couple of group homes in the community where there were beds set aside for that. What a lot of families were finding was that the model was very curtailing, very difficult, because you had to quickly get on the phone to get your bed and it might not be the weekend you needed it and you might have to go without that month.
The other side of it was that it was a model that really was not working for all kids, because you have so many staff shifting and they do not know your kid very well. An example is that a daughter of a friend of mine went in and they fed her something she was allergic to and she was rushed to the hospital and almost died. It is a difficult model to provide respite with.
In our community we worked for the number of years it took to finally develop something that was family-centred. It has grown from serving no families in March of last year to serving 50 families now and matching them with other families in the community; where many people are receiving their respite care in our community is that a co-ordinator has been hired to search a family in the community near the family, match them up. They are paid for service: I call it an honorarium, because for what they are doing it is not a lot. It has worked really successfully. It is also serving the most families, more than the associations are with their beds, because I think especially for a lot of younger families coming up it is seen as something they can feel comfortable using; people kind of hold back until their child gets a little older before they use a group home.
The way it ties into special services is that if families were to have an individual budget for their needs, if the family were to say, "I need so much help to do this and this at home, but I also need some respite care," and that became part of their individual family budget, it can be done with special services. A co-ordinator in the community can find a family and they can get some of the special services dollars to do family respite.
Ms Stone: I think respite, as with special services at home, needs to be flexible. I have a 20-year-old son who has a developmental handicap. He operates normally -- I mean, to look at him he does not look visibly handicapped -- but to find a babysitter for somebody who is 20 years old is not easy. In fact, it is virtually impossible; the kind of money you have to pay to get people to do it is very difficult. He operates best in his home environment, so to have someone come to us is much more easily handled by us and by him and probably by that companion person than if he went to someone else's house. That upsets his routine and is very difficult. So in my case that would be a better scenario.
In some cases having the child transported somewhere else works better. Having another family in place can sometimes work better for some families. But I think it is really important to have that flexibility and to have a variety of choices so that it works best for the person with the handicap. It also works best for the family and for the support mechanism that is in place. I believe that is true of special services at home. It cannot be tailored. You cannot set up a rigid structure that says, "This is the way it must be." The reason it works so well and is so much in demand is because it looks at the family. If I only need three hours a week, that is what I ask for and that is what I get. If I need 15 hours a week, then that is what I ask for. The makeup of that 15 hours is left strictly to the family, and that is really important.
Mrs Friesen: I probably made it sound like all of those 50 families receiving relief were doing it through another family. I should not have, because in some cases people are coming in.
Mr Jackson: I am glad you started to further refine this notion of respite and home care, because I think we need to clarify for the committee that this is a multiple delivery system and it has evolved over a number of years.
Mrs Friesen, you talked about Lisa's experience when she was nearly two, which would be seven years ago. Am I to understand that you did not have home care services for your local -- it was not one of the pilot projects?
Mrs Friesen: We were not aware of special services at home. We started asking for it when she was about 20 months old. It took five months to get into place. She was almost two when we started receiving help.
Mr Jackson: Maybe you are not qualified to get into this area, but perhaps at some point we will come back to this issue, because I have some concerns about how that system works in terms of it being an envelope; I have had experiences with families who fought to have their number of hours reduced while other families could not get access to the envelope. There are serious problems with the manner in which we administer that. I wanted to ask you to explain more clearly the difference between respite, which is in a sense moving out to another location. and then special services at home brought in and the kind of support that gives. Perhaps it has now been clarified a little better.
Mr Zwerver: Maybe Doug Cartan can try to answer that and add a broader context, both the history of the program and how that has come together as well as some of the realities of how that is being administered at this stage.
Mr Jackson: One other point, because I will probably lose the floor unless I get the question on. I want to thank both Mrs Friesen and Mrs McPhail, but I have to be very careful how I say this: I am very impressed with your presentation, but you are certainly not totally representative of the kind of parents we have out there. In my 17 years of doing direct association work, I have had cases -- first, we keep talking about family, and we must at some point underscore that we have a lot of mother-led, single-parent families, that there is a high incidence of this. We do not wish to discuss why that is, but there is. I have been called by doctors at 11:30 at night saying, "I am admitting Mrs So-and-So, who has had a nervous breakdown, and we are scrambling to find someone for the child." I think it is important that we get on the record at some point -- the word "desperate" comes to mind in several cases I have dealt with in my community and how terrible the support system is at that moment of crisis.
I think we serve the committee well if we allow that to be put in perspective -- not to take away from your presentation, which was child-focused. You are exceptional parents by virtue of your presentation today. We have a lot of parents who have nothing but their love to give their kids, and there are some differences out there. Those are the two questions.
Mrs Friesen: Would it be okay if I respond to that, or is there going to be a question at the end?
Mr Jackson: Those are my questions before I got cut off; I have left two hanging out there.
The Vice-Chair: Was there a question there, Mr Jackson?
Mr Jackson: I wanted them to perhaps expand the description of parents. I sense those are the only two parents we will be hearing from on the association today.
Ms Stone: Well, me.
Mr Jackson: Three. I am sorry. You wear three hats, actually.
Mrs Friesen: I get that kind of comment quite frequently: "You are different from other parents. You hang tough. You have it together. It may be easier for you." At the risk of being vulnerable to a pile of people I do not know -- Charles can attest to this; he has heard me speak before -- there have been times that I have been very close over the edge, totally exhausted. In fact, I slept two hours last night and have not slept for three weeks. You get a little adrenalin when you do some of these things. It is very tough at home when the load gets heavy and there is not the extra support. I say that to you because I am not that different from any other parents. The other parents I meet, when we share one to one, may not be able to speak it out, but we have more in common than we have differences. I can appreciate what you are saying about single mothers, because it would certainly be doubly hard. We have had our personal crises and we have had our moments, but I am thankful that we are in a community and that there are some people I can call on, because she has been in community and been supported to be in community.
Mr Cartan: I wonder if I could just take a little further the question you have just mentioned now, as well as previous to this. People have asked whether the multi-year plan is meeting the benchmark or the standards that have been set. That is one of the reasons for looking at this. Our presentation focuses, on pages 15 and 16, on Challenges and Opportunities, which is what we really want to talk about. If you look at those pages, you begin to look at the flagship initiative for providing other kinds of service and support to individuals so that institutionalization is not needed. That is what we are talking about here: Is the cup half empty or half full? That is part of the presentation here.
To put it in a different context from Michelle's, because I am not a parent but I help to implement and deliver this program to people, I want to say that, first of all in terms of describing relief and support, there are two types of relief and support in this province. One is out of home. You go somewhere for a weekend, a week, a day -- time -- somewhere to a home or to a bed somewhere.
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The other type of relief and support, which is more preferred by families by and large, is in-home support paid through a program called special services at home, which is by and large administered through the area office of the government. We are just concluding the eighth year of that program, so one could say it is an eight-year-long study of what families need. It was a needs study here. We have many lessons from this eight-year-long needs study which we can now present to you which we feel are not yet being taken seriously, and that is the issue we want to raise today.
The eight-year-long needs study has shown us that while the program was set up in order to have a quick in and out to a family -- see what is wrong, do something and back out, a six-month agreement and then the six months are over and you are back out -- the prime use of the program for families is that once you use it, you will probably want it again because chances are the handicap does not go away, chances are the family stress does not go away. So the intention of the program does not match its current use.
The good news is that people of the day, the eight years, allowed things to be flexible. They did not say, "Six months; get out; you can't use it ever again." People realized: "Maybe we should just go with what families are asking us. Let's just see what is happening." So after eight years, we find the majority, as much as 75% to 80% of the families who use it once use it twice, three times, four times, since 1982, like Michelle. That is number one.
However, the policy surrounding the program, the policy surrounding the main flagship initiative to prevent institutionalization is still last resort once you have tried everything else. It is not a primary home support option. As a result, many things fall out from that. Number one, we do not commit serious dollars to it. Number two, we do not have a policy of multi-year funding to a family, so a family has to get nervous and frightened every 6 and 12 months, and that is happening now in the province.
We do not treat the support family's needs the same way as we support service structures like group homes when a family gives up a child to a group home or to an institution. We indicated to you earlier that there is a wage discrepancy between institutions and community staff. The same discrepancy exists between community staff and people doing home support. We are now creating a third system. The third system is a home support system and it has an equal if not greater gap in the wages paid those people. So in other words, if you want to look at the value of someone in our society and you apportion that value by the wages that person gets, which is one way of looking at value in our society, the most valued workers are if you give away your son or daughter to an institution; next, if you are in a group home; and the least valued workers are the workers who support families to have their kids, sons and daughters, at home.
So it is an issue of the amounts of resources we are committing to it, but it is also a policy issue which can be done, it can be looked at, multi-year funding for families. Group homes do not have to sweat whether they are funded on I April, families do. My question is, why does that have to happen?
The second thing we want to talk about, and it is an issue for us and I deliver this program to 60 families; we hire a lot of people in delivering this, besides the wage, but it is becoming another women's ghetto of work. Not only do we have statistical data in our society to indicate that women still do a lot of child-rearing in our society, women are the people we are employing in our agency to deliver this program. We are averaging somewhere around $7 an hour to do something that we have now set other minimum standards, because of wage compensation adjustment, for community workers, not to mention institution workers, which for me is like nirvana in terms of being able to retain and control people.
So I want to indicate to you that, number one, the program is good. It is a good direction and we all applaud this direction; it just ain't taken that seriously in terms of the option for institutions.
The other thing I want to say in terms of page 16 on the program called special services at home, again, as the flagship it talked about adults. What happens to the 75-year-old family with a 50-year-old son or daughter still living at home and they do not want an institutional option or a group home option? After eight years of the program, after nearly four years of the multi-year plan, that family can still not access the dollars. The cup is less than half empty in terms of adults. It is probably half empty in terms of kids and families because there are some things going on, but in terms of adults it is woefully inadequate at this time. My agency has just had applications for adults, a 65-year-old single mother with her 33-year-old daughter, turned down for the program that was just expanded to serve adults.
A final point I want to make about the program, putting it in a systematic context, is that there is emerging in the province a pent-up demand, which has been alluded to by the Ministry of Community and Social Services for some years now, of adults who need support. Rather than being resolved or met, that pent-up demand is simply growing and the expansion to services in the community has not happened.
Special services at home is the one program which replicates all of the principles in the multi-year plan. It is the only one besides orders in council. It is the only one that replicates all of the principles of the multi-year plan and we have yet to take it really seriously as an option.
The Vice-Chair: Perhaps at this time I can point out that we have less than half of the time remaining that was allotted originally. As far as this section goes I have a great number of members on the list, but you have three more presentations to make, if I am correct.
Mr Zwerver: Essentially two more presentations; one on employment and another one on advocacy, essentially.
The Vice-Chair: All right. We can go on for at least another 10 or 15 minutes and then split the last hour between the other two presentations. Is that a good way to finish this?
Mr Zwerver: This is a pretty critical issue which is core to so much and reflecting on the policy as it has been developed and as it reflects the principles of the multi-year plan, and I would suggest to you, as a committee, that it is really the core issue to where we need to go.
The Vice-Chair: I just wanted to try to guide you in terms of time.
Mr Zwerver: If we take the next 15 minutes to deal with questions, we could probably pick up our starters in the other areas involved.
The Vice-Chair: That is fine. Very good.
Mr Beer: It is nice to see you on. I am very glad to hear about the respite program. It is nice sometimes that something that gets started works. We talk about this and other areas that are in the broad social service field. We know that we are trying to do things to move the yardsticks and yet there are still tremendous problems and issues.
What I would like to focus on here from all three of your experiences is, I do not think there was a program I learned about in the short time that I was in the Ministry of Community and Social Services that struck me as being as effective as special services at home, and that the infusion of a small amount of money could have such an immediate, direct and dramatic impact. When the Windsor-Essex group was organizing that particular program, that day I was down there talking to people about being able to design and develop how you would use dollars to be of real help in your own homes in many cases, and so how do we begin to shift to incorporate that much more in programs?
My question is this: The previous government, and the present government is going to continue with it, the long-term care initiative which spoke to community-based care for seniors and those with physical disabilities -- that was the initial thrust, and that is proceeding. You have said, and I have heard others say, if only there were sort of one place where we could go to find out about programs, to get direction which as parents we could access, because sometimes there are programs in communities and for a whole bunch of reasons people do not know about them.
Do you think we should be trying to envelop the multi-year plan more into that long-term care initiative, or is it simply that if we could enrich the special services at home program, the parental involvement in defining and what we should be doing, and really focusing on families, because I think both you and Eva earlier really underlined what looked like a need? Certainly there are needs that the child has, but the child is part of a family of whatever shape and description, and increasingly we know that there are more and more infants and younger children who are now living much longer with greater needs, as well as those who are now adults whose needs are perhaps less.
How do we begin to attack this organizationally, because again, I think what we have to be doing here is trying to help move things forward. We can say, "Put more money into special services at home," and frankly I think any government, if it can, wants to put more money into those things, but are there also some things that we can do that, if we can get more money into them, will also make it a more effective system? From your end of the telescope, what are some of your thoughts on that?
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Mr Cartan: I think it is an extremely complex question. In terms of its relationship to long-term care, which has some similarities that we can see in this, I would advise extreme caution at this current time for a couple of reasons. One, the long-term care program in my community and in other communities has an extreme medical focus, although there are other kinds of integrated homemaker programs and other things that come out of it. For example, case managers are nurses in our community; 99% of them are nurses. So there is a medical perspective on the situation. It is, at the same time, not as easily flexible as special services is.
Also, the final thing, which I think is the most important thing in the province, is that special services at home allow the user of the program to have control over some of the resources. Things are accountable, but that is not replicated anywhere else. While not all families choose the option to self-direct a contract, you still control the resources in saying, "I want it to go here or here and they can help me implement." That characteristic is fundamental to any of the announcements that have been made about self-direction in this whole field. I think in that sense I would express some extreme caution around seeing the two melding so quickly together.
Mrs Friesen: I would just like to add that when I was referring to one place to go, it was more for one person to ask for help, not one place to go get your resources, because families need the choice. We have experienced where needs were not being met because of inflexible agency guidelines or whatever and we could take our pot of money and we could go there where the needs would get met. That is really important. People have to be able to choose where they direct their funds.
Mr Beer: I think that is an important point that I wanted to make sure we heard because it has come up. In fact, I think for those with physical disabilities there has also been that concern around the self-direction, the individualization which you speak to.
The Vice-Chair: I would like to move on to Mr Malkowski next on the list, and then I have several other members waiting. If you could be brief, we will try to get everyone on for some questions.
Mr Malkowski: I want to thank Mrs Friesen for her presentation and sharing her experience with us. You described your experience. Most of the previous information has been provided by medical professionals who describe it from a medical perspective or a deficit model. They say all the things the children cannot, cannot do and then that of course influences the parents to increase their grieving process.
Do you feel that the medical professionals should change their focus from a deficit model to a humanistic model, and do you think that would help parents to feel less stress or have less negative feelings towards their child?
Mrs Friesen: Actually, that was part of my presentation I eliminated when Harry told me to speed up.
I was going to refer to the fact that not only the medical people, but other professionals who are supporting you operate from a medical model, which is: "Fix it. This is wrong. Let's go in and fix it." One example I was going to give that was not even related totally to the medical was that when we were in a state of collapse at one time and appealing for more dollars through special services at home, we were told by personnel who had the control of the money, which in our area was the institution at the time, if we just could not cope with what was there, the maximum, then maybe our daughter should be placed, which I could hardly believe because the answer was like if we could not manage, it was our fault.
One of the social workers sitting around the table who I think had just gotten out of university said, "Maybe I could give you some counselling," so it was like the mother needed fixing and everything would be fine, that kind of thing, and everything is like that, absolutely everything; and we have done a lot of work with parents in our community where we have said, "You have to start looking at your kid as a child first and even work with professionals," and we see change in our community.
However, across this province people do operate from, like you say, the deficit model, and what really has to happen is that people look at the whole person and what does that whole person need to be part of the community. If it means support, you are there; it is not necessarily because something is wrong and we are going to fix it. It is because they are different and they need the support and I would wholeheartedly agree that that does help parents if they can look in a more positive light that way at their children.
Ms Stone: I always say, with my son, positive versus negative, and if you look at him in a positive sense and all the things he can do as opposed to those he cannot then you see him as a positive, functioning human being instead of someone who is negative. I think that is a really important point to bring out. How you view that person and the amount of ability, even if he can only smile, that is something that he can give to us and I think it is really important to look in those terms.
Mr Malkowski: I have a very brief supplementary. Do you feel it is important that we have a hotline that could help parents on the phone giving them the opportunity to express their feelings as well as get information? By using this humanistic approach, do you think the hotline would help? Is there any way that parents can get relief?
Mrs Friesen: That is not anything I have ever thought of so I do not really know how to respond to that. I really want to be in favour in communities where people can get to know each other and network and support each other and I see that working in our community. A hotline, like I said, is just something that I have not even thought of. Possibly in communities where there is in fact networking going on it would be a help.
Mr J. Wilson: I have a difficult question and I guess it comes partly from my background. Prior to the election I was an assistant for many, many years, as Nancy may know, and also worked at Canada's Health ministry in the last couple of years. Time and time again when we meet with groups we hear the same thing, as Maureen mentioned and Michelle has mentioned and that I think a number of speakers have touched on, and it has to do with the government itself or the bureaucratic process, and just to take a step back -- Douglas, I know you want to talk about the service aspect more -- what can we do, in a nutshell, given the time limitations of this committee and the limited recommendations I think we will only be able to make? Should we be training our bureaucrats farther back in the system to understand parental needs?
It seems to me there is always that gridlock of understanding. Maureen mentioned that if you got along with your regional office, things went better for you. If they took the time to understand you, it was better. We talk about the need for flexibility and control and accountability and yet the bureaucratic mind and the governmental mind often is: "We live in a legalized world. What if something goes wrong? Can we trust the parent to deliver the service? Somebody might get sued along the way." I am looking for the miracle answer, I guess, but we talk about training care givers; maybe we should be doing something farther back in the system. We can give all the orders in the world as legislators, but particularly my experience with Canada's health system, it seldom gets translated into the field. I have always looked to see what the answers there might be so I would be interested, Mrs Friesen, for instance, to know what your experience there is?
Mrs Friesen: Well, my feeling is that it is very simple. If the bureaucrats and the people delivering service just felt that families were that important and that they are important institutions and we value them, then we are going to listen to them. If the whole model is what the families say they need and all the bureaucrats -- if it is written in their guidelines and it filters down to the area offices -- and they know that families are the most important thing and what they say they need and what they ask for, we should give it to them. We should help them get those resources. We should support them in any way. So then the bottom line is, it is simple now, as far as the training -- if I can touch on the training of staff people, in my experience, maybe because I am doing the training, I find I have a lot more success if the people do not have any preconceived ideas and have not been trained already at some community college. My daughter has medical needs and they manage, because when the parents who hold the key are doing the training and the asking, it can only work. It is as simple as, if families are important, we have to give the workers who are in the families more money and we have to listen to what the families are saying.
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Ms Stone: If I was going to give you a magic answer, I would say that many families deal with many ministries. The co-operation between those ministries is less than nil in the sense that if you have a health problem and you go to the Ministry of Health, they look at you with blinkers and only see the health portion of your family. If you go to the Ministry of Community and Social Services for support mechanism, they look at you with blinkers and see only that section of your family. Somewhere along the line we have to get some co-operation between all ministries. Education is another biggie in the sense that if the Ministry of Education is running a program, there is no flexibility for sliding back and forth or for some co-operation with another ministry. They are all done with the blinker concept. They are looking straight ahead only.
I would ask you as a politician to begin to address some of that interministerial co-operation and some of the grey area that slides from one to the other. I think that is really important to families, because we often find we are dealing with lots of ministries, and we are dealing with them in quite separate ways and categories, as it were.
Mr Zwerver: I think there is one other piece of that as well. Unfortunately, the issue of training and attitude in some ways is not as different within the bureaucracy of government as it is in the community at large, so it is one thing to have corporate direction and corporate policy, but it still means that there are people who come out of a certain mindset, who come out of a certain level of understanding, of attitudes, who have grown up with a whole lot of myths around people who have been labelled and are going to have to deal with implementing some of those policies.
I think part of what we need to do is to be much better at beginning to deal with attitudes early on, with public education, and clearly we have to spend much more time dealing with some of those basic issues with the people who are hired to implement policy. That is true not just within government; that is true within the agencies and the structures. Parents have a lot to teach us about that, obviously. We have heard that this morning. I think that is just a very basic issue and it runs throughout the whole system, because it is a system.
Mrs McLeod: I want to take a moment to link a couple of parts of what you have been saying so that I can clearly understand it, because I think what you have been talking about for the last little while may represent some fundamental change in our approach to providing service. You began by talking about an inflexibility that systems tend to develop and went on to talk about the importance of providing a service directly to the family, so that the family can essentially design a plan that works for it. As I listened to you, I wondered if you tend to think of the family as being the parent and the child with the particular problem that we are providing service for and fail to understand that the family is a larger unit that needs support.
I will take 10 seconds to think of one constituent I talked with recently, a single mom with a two-year-old multiply handicapped child with severe medical problems requiring fairly constant attention, who was receiving everything the system could give, special services at home, respite care through the voluntary organizations, Easter Seals support for medical treatment, extended family with informal care givers, but it still was not meeting the need she had. The response was, "What more can we give?" What she was really saying was, "I need special services at home to be delivered outside of my home so that I can stay home and be with my four-year-old." Is that the kind of flexibility, that specific kind of thing?
Mrs Friesen: That is the kind of flexibility we want, for you to say, "Yes, if that's what you want, we'll do it."
Mrs McLeod: But that is where the inflexibility tends to come in.
Mrs Friesen: Yes, and in our community right now, where there are some associate families developing out of this respite program I was talking about, we have been told, "No in-home programmers from special services at home can go into those homes." So you tell me how some family that has young children is going to take care of my daughter by themselves for a week without a little bit of support. It is exactly what we are saying. There has to be flexibility.
The Vice-Chair: Perhaps we should move on to the next presentation.
Mr Zwerver: The next piece we want to focus on for a few minutes is the whole area of resources and employment, which is about, how do we use the resources of the community more effectively, not specifically family focus but how you deal with the wide range of supports that an individual needs within the community? What I am going to ask Doug to do is just briefly introduce that, and I have asked Gordon Kyle, who is our employment consultant, to give you a quick snapshot of what is happening in the area of employment.
As you know, in the multi-year plan, Challenges and Opportunities, reference is made to providing a new direction to employment for people with disabilities, with specific reference to moving away from the sheltered minimal employment opportunities to really supporting people to be productive in a very real fashion in the community. We are in year four and Gordon will talk to you a little about where we are with that and what some of the roadblocks are, and also, I think, share with us some of the directions that are possible at this point. We will try to keep this piece relatively short to allow for some questions at the end.
Mr Cartan: In terms of the resources in the multi-year plan, I think there are essentially, I guess you could say, two or three different aspects of resources that need to be looked at. One is the resources that are dedicated to individuals or families -- special services is one example we talked about -- but there are also resources dedicated to people coming out of institutions, nursing homes, that kind of thing. Those are what we call individualized resources in our system. They have been available to people coming out of institutions. However, they have not been available to people currently living in the community. That is a significant issue for us at this time, increasing the whole idea of the pent-up demand in the system.
In addition to the resources for individuals, there are resources allocated to the infrastructure, the people who are core-funded, the supervisors, the behaviour management people, the infant stimulation people, other kinds of things, the infrastructure resources. A subset of what has happened in terms of that in the multi-year plan is the wage compensation exercise, moneys, resources, allocated to strengthen the infrastructure. That has been a good initiative. We applaud that and hope that can be extended in the future so that there is more wage comparability inside the system.
In line with those resource allocations, a subset of all of that is, by 1991 is anybody taking a look at how the resources have been spent and changing it all around? If you had a company and were spending for 12 years on a piecemeal kind of approach -- that is the way things grow in social services, a piecemeal kind of approach -- would you not stop at one time and then sort of reorganize the resources differently because the demand in 1991 is not the demand of 1979? That is one of the key issues we are trying to look at right now in our system. Two key areas where we are looking at that is residential and employment. I think Gord is going to speak for a few minutes on the allocation of resources and how it affects the employment side of the equation.
Mr Kyle: I think the issues around employment are not significantly different than all the things we have been talking about this morning. We have seen that the multi-year plan has really called for a new direction and a new way of thinking about how we use the resources at hand. That is that we have tied up right now, or over the last two decades have tied up, a lot of resources into building base rehabilitation systems for people. We have attempted for some time now to make people better, to take people with disabilities, put them in rehabilitation centres and prepare them in some way for community.
What we have found over the last several years is that the more effective approach to dealing with people with disabilities is to take them directly into their communities, as with all the other services we have talked about here, and provide them with the supports they need to make decisions about the type of employment they want to go into and that would be suited to them, and support them in helping them to go out and meet with employers and find employment and then with support to go in and learn the job, to do job modifications and to retain employment over the long term.
This is not new to the ministry. I think the documentation that has been developed over the last few years following Challenges and Opportunities has clearly outlined what it is we want to do. The problem is that we are not getting to it. Quite a number of support-employment services have started in the province in the last few years, but it often seems that they are starting despite the efforts of the ministry. We have agencies going off and playing with their own resources and digging it up, and often fighting battles with their area offices just to allow them to use the money they give them in a different way to provide a different type of service.
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I guess the good news in this is that the minister recently came out with guidelines around supported employment which laid out a lot of these issues and I hope that will give some guidance to the area offices in looking at new ways of providing funding to services. However, at this time I have not seen a whole lot of new action. In fact, a number of area offices that I have talked to just have not begun implementation of the policies, or in some cases do not know what I am talking about when I ask them about the guidelines. I think we need to get that information out. Clearly, we really need to look at where we are spending money and how we can begin to start realigning the resources.
The shelter workshop systems we run are very expensive and have a lot of resources tied into them. If we can find a way of moving that resource into supported employment, I think we can make a lot of effective change.
There are a couple of the key things that are stopping change from happening right now. One is that the workshops were traditionally set up to be places of work and to produce revenue. On the original funding basis they were all funded originally at 80% funding. The ministry provides 80% and they are expected to produce 20% of their budget through revenue. Clearly, if you are moving to a system of community supports, there is no room for revenue production and the new systems just will not support that.
I think one of the keys to addressing this is that in some cases we need some money to offset the revenue expectations that services are now expected to carry. I have worked with a lot of agencies in helping them look at their budgets and in many cases we do not even need additional money. I think that because of the costs it took to run sheltered workshops, in the purchase of supplies, in running trucks to get your supplies around and all the additional costs that this kind of rehabilitation centre called for, the money that they save by not doing that and by going to community supports -- in many cases we are seeing that the services could run on the existing money if they were simply allowed to and were given some support from the ministry to make the transition to the new services.
Another area that we are going to need to address, however, is staff training if we are using existing resources to develop new systems. We have a lot of staff who are trained and who understand the old way of doing things. They are well versed in rehabilitation, but not necessarily in community support.
I got into this field in the late-1970s, running a sheltered workshop, and at that time when I did my budgets we used to normally slot in $125 per staff person in the budget. I recently sat down with one of our local organizations to do a budget. They are still slotting in $125 a year per person 12 or 14 years later. It just will not do. We have to get more money in there, at least for the next few years, to get the staff up to speed and really address that. In some cases we will need additional staffing resources as well. A lot of the services we run could provide community-based service with the staffing they have, but that is not always the case.
Finally, I think that one of their real keys to success in getting into the community in the next few years is going to be the legislation around employment equity. We really need to get employers on side with what we are trying to do here and get more support from the community. We are pleased that the new government has said it would bring in employment equity legislation. That will be a very important component of this whole question.
Mr Zwerver: We are open to questions and we can elaborate on any of these points.
Mr Malkowski: I wonder if you are aware that there are services related to the Ministry of Community and Social Services. Often vocational rehabilitation counsellors refer people to sheltered workshops or to employment training centres for people who are disabled. I wonder if that referral system needs to be changed to more of a supported employment opportunity. Do you feel that would help?
Mr Kyle: Yes, I think so, absolutely. What all our speakers have talked to this morning is the issue of individual plans for people, looking at the person, looking at his family, looking at the networks that are around them and beginning to develop those networks to support people. The traditional vocational rehabilitation services system of evaluation and assessment and rehabilitation just is not working in the new model and I think we really do need to look at all those questions.
Mr Malkowski: I wonder if you have any models of supported employment-centred models, whether in Canada or the United States, or an organization or some kind of model that you may wish to follow.
Mr Kyle: The United States is somewhat ahead of us on this and a lot of the models we are adopting in Canada we are kind of taking and modifying for Canadian use, so there are a lot of models of planning and support that came out of the United States. There are now, in Canada in the last five years, services that have done a very good job. We do have examples of quite successful services -- one close at hand here.
The Mississauga association has been running a support employment service since 1984, I believe, and has had a great deal of success. It is a larger organization. We have smaller organizations all over the province that have done very creative things. One of our newer organizations is the Valley Association for the Mentally Retarded north of Sudbury that just never had any building based services and has been very creative in the development of the community, be it little towns like Nipigon and Red Rock up near Thunder Bay that took a very traditional building based service.
I think it was just a matter of a new director who came in and took seriously the literature that the Ministry of Community and Social Services had been sending out and did what it said it wanted her to do with the money it was giving her. It now has an absolutely community based system running in a very small town with a very minimal employment base in that town. There are a lot of other examples. Yes, we do have good examples.
I think the key now is the planning components and that is what we are struggling with, finding good models for individual planning and figuring out how that planning mechanism links with people's residential and recreational options, as well.
Mr Jackson: I would like to follow up on Mr Malkowski's line of questioning. It is very good. He asked my first question, which was for examples and I was pleased you shared those with us, but on the point you made earlier, Gordon, with respect to change in format and cost analysis, has that ever been put to paper? Has that ever been analysed or are you aware of any reports?
Mr Kyle: Cost comparisons between the two different approaches?
Mr Jackson: Yes. You alluded somewhat to it and I did not know if it had been formalized or if it is just a gut instinct.
Mr Kyle: It has been done at local levels. We do have some. The Mississauga association I just mentioned has done a very careful tracking for its own purposes there, costs between the way of doing business as they used to do it and what it is costing now, and that has been done in various areas. I am not aware of a provincial or Canadian --
Mr Jackson: Okay. On the employment equity legislation issue, I have seen the statistics of what has been loosely referred to as the five identified groups, of which the severely challenged, the challenged, or as some may call it the disabled community, has been identified. I have a concern that within that subset of disabled that although the provincial average is high for disabled, access for children with developmental handicaps, they do not fare well within that group. Am I making myself clear?
Mr Kyle: I think so, that people with developmental disabilities would not necessarily do as well as other groups under --
Mr Jackson: The blind and the deaf and those without limbs are doing extremely well in the context of access relative to others and that is a concern for me. I do not want you to address employment equity legislation, but I want you to at least tie down a point for us in terms of within the community there may be some importance to advocate for that.
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Mr Kyle: If I understand your question, I think yes, sure, there is some concern that employment equity legislation will still leave employers going with -- if they are legislated to hire a person with a disability, they will hire the person who is the least disabled and the most capable of doing the job at hand. I think this is where we need to marry the employment equity legislation with a strong support network, this type of system that we are talking about here around supported employment. The two need to be done hand in hand. I do not think one or the other is necessarily going to do the job for us.
Mr Jackson: Might I suggest then that given that we are aware that it is a commitment, it might be worthwhile for us to be looking at models around North America which have succeeded so that we are ready when the legislation does come in order to have that fine-tuned input, and might I share that with the association publicly, as I have privately.
A final, quick question, Mr Chairman. It has to do with the economy we are in. I asked the minister yesterday if she had anything to share with us about the minimum wage policy and legislation which was dropped. You have not really talked to that issue.
Mr Kyle: We had a comment on it in the document that we are submitting.
Mr Jackson: We have not had a chance to read the documents. We are very much at the mercy of what you present to us verbally. The concern with that, also with respect to a slowed economy -- we are not getting the numbers of contracts -- and its impact on our workshops, if you could hit those two points very quickly. I will stop there with questions, but those were two that I really wanted to get some feedback from your association and perhaps you directly on.
Mr Kyle: If I understand the question, just to comment on the wage policy, we are very pleased to see that the direction that was being sought has been abandoned now. We had a lot of concerns about any attempt to evaluate productivity of individuals with disabilities and then pay them accordingly, to pay people less than minimum wage. Very clearly, people with disabilities deserve the same protection of law as everybody else and we have to get better at providing support systems to ensure that people can work at a reasonable level that warrants the minimum wage or better.
We keep talking about less than minimum wage. Minimum wage, especially if you are in the Toronto area, is an impossible level to live at. We have got to do better than that.
I think clearly there will be cases where we do have people whose productivity level is a real barrier to their employment and I think we will have to find models by which we can make some compensation perhaps to the employer or look at other approaches to it. But I think the Employment Standards Act set the standard that we want to see adhered to.
I did not quite understand the other question, but I think it was the productivity within workshops.
Mr Jackson: How are they going to survive if we are not getting the contracts in this economy? What impact is that going to have?
Mr Kyle: On what?
Mr Jackson: On the sheltered workshops. Are we going to tell them: "Just go home. There is no work"? What is going to happen? What possible recommendations could you give us?
The government talks about protecting workers and I would like to make sure that we are protecting these workers as well. They have a right to the same kinds of protections and interventions and supports financially which we are seeing in this very difficult recessionary time. What are you seeing happening, or do you have concerns? You have gone through one recession in this last decade, and this one apparently is going to be worse.
Mr Kyle: I do not have a lot of concern on the sheltered workshop side of things. Traditionally the sheltered workshops have been an inexpensive way for community employers to get subcontracted work done, so I do not hear a lot of concern coming up from those services that they are hurting. Where they have lost contracts, they have been able to pick up others because employers are looking for cheaper ways to do things. I have not seen that as a concern anywhere right now. Clearly it is a concern on the level of community employment, though, because there are people being laid off in all sectors and often people with disabilities are in the line of the first to be cut from jobs as cuts are made.
I do not know that there is an easy answer to that, other than just making sure that we have supports so that people with disabilities are seen to be as valuable as other employees.
Mr Beer: Just one comment, I guess, having moved away from the ministry. One point I want to make about the wage policy is that I think, frankly, that you had made your case and that would not have gone forward in the way in which originally it was going. I know -- not only I personally but many others, as we looked at the pilot projects, had deep concerns about it, and certainly it is important that you indicate the new direction we are going now. But I think a case had been made and I just want to put that on the table.
The question I would like to ask you is one perhaps that especially those of us have who are from smaller communities outside the larger centres, although this may apply as well in Metropolitan Toronto and Hamilton and Windsor and Ottawa. It is around the role of the sheltered workshop. I guess when we meet with parents, whether it is through the OACL or other organizations, there is a lot of fear at times among parents when they hear that the local sheltered workshop is going to disappear. The concern is not necessarily about the individual or about his employment or rehabilitation or what have you, but just simply that in terms of a range of opportunities, I suppose, that exist in a lot of the smaller communities, that workshop plays a number of roles.
I do not think that I have found in my brief experience as an elected member of the Legislature an issue which, if you are at an annual meeting, kind of brings people alive. Seeing things like the Mississauga program and talking to the people who are involved and really realizing the thought that has gone into it and the individualization, and then if you just talk to the people first, you know that really is the way we want to go.
What are some of the things that we need to do? Clearly, as Cam says, if we are in a recession, that adds difficulty and so on, but in many communities those sheltered workshops are very much into the terra firma, and you cannot be saying to people they are bad, they are all these horrible things, because the reason they are there is to provide help and people see them as being supportive. How do you work with that shift? I mean, it is an attitudinal shift, but it is more than that.
Mr Kyle: It is an issue I deal with a lot, and a key part of what I do in my job is support to our local agencies in planning for transition of service. I have learned long ago to be very careful. I never walk into a place and suggest that what we are planning for is to get rid of the sheltered workshop, because you are right, you cannot deal with the backlash because there is still quite a bit of support for them in some cases.
I think the key to it really comes down to what we have been talking about all morning. Again, it is individualized planning. I just recently had been working with one of our agencies on development of a new system of planning for people, and one of the things we are realizing as we go through the process is that by individualizing, working with families and working with people, we do not have to cut options from people. If, clearly, a planning process makes an indication that the person and the family and everybody involved is in support of the person staying in the sheltered workshop system, I do not think at this point there is any real reason to be moving people out of that system. Clearly, the sheltered workshops are not going to be disappearing in the next two years. It is a slow process of getting people into the community.
I tend to lean towards suggesting to people to deal with the people who want to get out of that system and to work in getting people, through the planning process, out. If people are wishing to stay where they are, then stay there. Down the road, that may not be satisfactory in the long term because you come to a real philosophical barrier at some point, I would think, where the agency just simply says, "We philosophically are for a community living organization and can no longer support being the people who provide the segregated service in this town." I am not sure what we will do when we get to that. I just have not seen any agencies that have actually got there yet, that have been so successful that they just do not have any need at all for their sheltered service. So I think as long as we are running them, let the people who want to be there stay there. Down the road we will have to deal with that.
I think also what we see is that the people who want to stay in sheltered services become fewer and fewer as they become more comfortable with the idea and see that the supports are working for other people's kids and for other people in the communities.
Mr White: I have a couple of questions that are quite related, and perhaps I could address those both to Mr Kyle and to also you, Mr Zwerver. What I hear from the earlier part of your description of the program and changes in the program is some difficulty in shifting, in terms of the personnel who are employed, from one kind of work placement, which I believe is the sheltered workshop placement, to the community-based program. Essentially what you are talking about is using the same people who had the earlier skills, and without additional training moneys, without additional staff development moneys. Out of the $125 a year. which nowadays pays for lunch if you include GST, you are expecting these people to adopt whole new ranges of skills. I will leave the other bit for a supplementary for Mr Zwerver along the same lines. How is that process working?
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Mr Kyle: It is working somewhat by agencies being very creative with whatever money they have and finding ways of getting the training, but that is not terribly well, necessarily. It makes the transition of service very slow, because often services wait until they have an opportunity to hire new staff and then go and find people who have some training and some qualifications to hire in. I do not know; it is a very major problem in it. It is not working well, I guess, is the answer.
Mr White: If I could, along the same lines, to Mr Zwerver, we had earlier an allusion from Ms Brown about the difficulty with increased service demand and of course, as Mr Kyle indicates, the changes in service requests and need for help in terms of infrastructure and the means of addressing those issues. I am wondering if you could comment on that.
Mr Zwerver: I think that is becoming a very serious problem. As Maureen indicated, if you have an agency that has grown three- or four-fold over the course of even four or five years, and when additional resources have not been made available to deal with the infrastructure question, then you really do get into difficulties around, how do you manage that kind of system, how do you provide the supports in-house that are necessary to ensure that service quality is being addressed, the training needs are being addressed for the organization, especially if there are not a lot of training dollars and it really is a matter of supporting it by the people that you have?
I think what is happening in some cases is, agencies are beginning to say: "Stop already. We can't cope with one more request. We can't take one more person out of an institution. We can't do anything more until we take a look at where we are, in-house." The way that used to be dealt with was by agencies being challenged to look at the fat that was in the system and by reallocating resources and doing all those kinds of things. Well, frankly, there is not much to reallocate any more and that is becoming a very serious problem, even with some of the larger agencies.
So really, I think for government it is now a question about if we are going to support a range of service options in this province, from very traditional kinds of models of community residences that are run by community living associations and other programs that are being provided by our member organizations, as well as providing parent-driven models and so on. I think it really is time to go back to some very basics. One of those basics, I would suggest to you, is not just around the amount of money that flows but also the flexibility with which that money can flow.
We have some legislation that I would suggest to you creates problems. We have the Homes for Retarded Persons Act, we have the Developmental Services Act. One is funded 80%, one is funded 100%. There is the whole issue of community agencies trying to find local money through fund-raising to essentially provide very basic services to that community, children's programs that are funded at less than 100% because of a historic problem that has been there and people having to try to find the 3% or 4% in the local community. Yet essentially what is happening is, these agencies, transfer payment agencies, are in fact carrying out government's mandate. It seems to us to be unreasonable to expect that these agencies go back and compete with all the other services in the community that do not in fact have a mandated responsibility to provide a range of services when we have government committing itself to a challenge contained in Challenges and Opportunities, saying, "This is what we're going to do as a government on behalf of the people of this province to make sure that community living opportunities, truly individualized community living opportunities are going to be made available for all people, including those coming out of institutions, as well as supporting people who are already in the community." If that is government's commitment, then I think the dollars have to be there to do that.
The Vice-Chair: I have Mr Owens, who would like a final quick question on this segment, and then we will move on to the next segment.
Mr Owens: I may try the chairman's patience on the definition of "quick," but one of the success stories that I am aware of with respect to supportive employment is the Sunrise Janitorial Services here in Toronto. I am just wondering, in looking at recommendations that you folks might be prepared to make with respect to training people and preparing folks to get into employment, are we heading in the right direction? I am aware that there is a program or a model, social role valorization. Is that worth supporting? Does that head in the right direction or are we doing enough? Maybe that is a dangerous question to want to ask, but are we headed in the right direction?
The second is, Mrs Friesen touched on an issue that I am concerned about, cultural sensitivity. Are we doing enough, again, to be culturally sensitive to the whole problem of supportive employment, or are we slotting people into places where the family may or may not think it is appropriate? Due to cultural reasons, the family may or may not be able to communicate because of language problems and, again, not understand the reason why their son or daughter is in the situation.
The third issue that Mr Jackson touched on is, with the economy in a downturn. my understanding is, and you correct me if I am wrong, there is apparently a lengthy delay in terms of when a person is laid off and then when he can get back into the FBA loop in order to start receiving money again. Can you make some recommendations how we can close that kind of gap so that there is that economic support from the time of layoff through to when FBA kicks in, or whatever social service is required?
Mr Kyle: I think Harry will respond to the first part of this.
Mr Zwerver: I will respond a little bit to the second half as well. If you remember the Transitions report, it really did talk about how some of that loop can be closed and I do not think we want to get into kind of going back through those recommendations, although Gordon may want to comment on that specifically related to supportive employment.
The answer to the first part of your question, which I think underlies the whole issue that you are raising, is that, no, we are not doing enough. The question I guess is, what is enough? Enough is only when we can respond to an individual's unique needs and be able to develop a range of supports for that person so that that person can truly be supported in community. Ultimately, that is where we have to come to. All the steps we have been talking about this morning and all of the things you have heard already in your committee deliberations are really pieces of that puzzle, and I think at this point, for a lot of people, it is a puzzle. We are trying to get all the pieces together. There are many different pieces to that.
I think philosophically the issue from our perspective, and I think it has been well stated by the parents who were here, is that we have to respect the individual needs of the person. We need to provide a range of options for people based on their needs and based on their skills and interests. There are no simple answers. We have a lot of history in this province of doing things well. We also have a lot of history of sometimes doing things well in spite of the systems and structures that are there.
I would suggest that one of the things we need to do very quickly is to take a look at some of those systemic questions. They have already been alluded to -- program funding, model-building, legislative reform, all those kinds of issues. I think that really has to be the challenge of the government at this point. How do you make sure we have an environment within which all of these things can work, rather than people feeling like they are beating their heads against a brick wall because somebody says, "It doesn't quite fit" or if that is the kind of dilemma that we as a society are in, as an organization which advocates in this area we certainly continue to push for that. It is very difficult in a morning like this to be concrete and specific about every one of these issues. We have background documents for all of the things we are saying here today which we can make available to the committee. The fact is that it is a matter of vision. If we have a vision which is reflected in Challenges and Opportunities for the future of all citizens of this province, then we have to make sure that at least the systemic issues do not get in the way of that. That is the least we can do.
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The Vice-Chair: I think it is probably best to move on to the next segment. We are quickly running out of time.
Mr Zwerver: Moving along to a systemic issue, I am going to ask Orville Endicott to share briefly with you some of our concerns and our position around the whole area of advocacy. We are very pleased, obviously, with the announcement by the Minister of Citizenship recently that the province is going to embark on developing a province-wide advocacy system. What we are going to share with you this morning are some of the questions and concerns which we think ought to be addressed as this model is being put in place and which I think you as a committee need to look at in terms of the broader scope you have in your deliberations.
Mr Endicott: I feel somewhat inadequate following the presentations you have heard this morning. Even though they are my friends and colleagues, I have to say I was very impressed with them. They are, without exception, very hard acts to follow. I have to do that also without the support and assistance of my friend Ruth Hatton from Oshawa, who warned me that she may have difficulty getting here. Ruth is someone who shares her home with another woman who has some very challenging needs, and maybe those needs this morning took precedence over my need to have Ruth here to assist me. She did have the foresight to do a one-page handout about particular cases she has been involved in and I will be happy to share that with you at the end of the session.
I guess I can take some comfort in the fact that I do not need to persuade people in this room about the usefulness of advocacy. One of the really interesting things is the degree to which we have had, across the political spectrum in this province, concurrence about something which is essentially a very revolutionary program.
We had first the articulation of the vision by a former Progressive Conservative member of Parliament, the late Father Sean O'Sullivan, in his review of advocacy in the province. We had then, during the latter half of the 1980s, a period of reflection and nurturance of the idea under the former Liberal government, and now we have the New Democrats in the position to announce that implementation is going to take place no later than 1992.
Mr Chair, can I get some clarification? Is this the same committee that will be studying clause by clause the package of legislation that the Minister of Citizenship announced would be introduced?
The Vice-Chair: I do not have word of where that legislation will be going. I cannot confirm that.
Mr Endicott: Maybe at least some of you will be participating in that process during the coming year, and I am sure some of us will have an opportunity in that process to come back and share our ideas with you.
What I wanted to do in a few minutes, and of course leave room for questioning, is to plant in your minds some of the things you ought to be looking for in the process of the introduction of this legislation and its ultimate implementation.
Advocacy is something you probably do not need me to instruct you about, but at the same time it is in danger of becoming a motherhood word that people assume they have commonality of understanding about. What I say sometimes to people is that the essence of advocacy is found in those three letters in the middle, V-O-C. Those same three letters are found in the word "voice," V-O, and then there is an I thrown in, C-E. Advocacy is giving expression to the voice of the individual, particularly, in our case, the voice of the individual who is vulnerable to loss of rights, to loss of autonomy, to loss of opportunity in our society.
The articulation of that voice ideally comes from the person himself or herself, and the advocate, then, is in the role of supporting and encouraging the voice that says, "I have rights, I have needs, I have entitlements." But there are times, as well, when the advocate will amplify that voice, augment it with maybe special knowledge about the individual's rights, and there will be times when the advocate will be called upon to actually be the voice for someone who literally has no way of communicating in language the world can understand what his or her needs and wishes are. You have heard people this morning who obviously have used the voice of advocacy in that context.
What I would also like you to keep in mind when you are considering the implementation of this proposal is that advocacy has to be independent. It has to be independent of government. It has to be independent of service-providing agencies, including service-providing agencies which are part of the Ontario Association for Community Living. Advocacy has to be -- and this is clearly the government's intention -- consumer controlled. It has to be accountable to and shaped by those for whose sake it exists. The minister's announcement was interesting, because I think she was trying to find a balance between not saying something vague and meaningless while at the same time not saying, "It's going to look like this and this and this," because the commitment is that the community is going to be able to have input and control about what advocacy in this province will look like.
There is another important thing for you to keep in mind. You have heard advocates this morning who are not part of an organized system funded by the government of Ontario. Whatever system does develop as a result of this legislation must not interfere with that kind of natural support that comes in families and friendships and existing community circles of support. We have to make sure our advocacy is not something that rides roughshod over those good things that are happening, but recognizes and validates them.
I have to say also something about the relationship between advocacy and substitute decision-making, because the government's announcement was that there would be a legislative package of three bills, not only establishing advocacy in the province but reforming the very badly outdated law of guardianship of adults, and also a third bill which would again deal with substitute decision-making but within the context of health care services.
This is probably one of the most difficult areas for you as legislators and us as advocates in the community to come to grips with, because when you really consider it, you are talking about two diametrically opposed phenomena. When you talk advocacy you are talking about empowering people, letting them be in control of their lives by supporting them, but when you talk guardianship you are talking about putting someone else in control of someone's life.
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We saw it coming, so we certainly were not taken by surprise, but it is kind of puzzling that those two essentially conflicting kinds of legislation and public programs are being introduced in tandem. I think there is a reason for it, and the reason is that guardianship needs to be under the scrutiny of advocacy so that guardianship is not resorted to too easily. Right now people complain that guardianship is costly and difficult. If you make it easier, are you really solving the problem or are you creating a new problem, that people too easily lose their autonomy? That is where advocacy comes in, to make sure that autonomy is not lost.
I think we had better stop at that point so there can be some dialogue.
Mr Malkowski: Thank you very much for your presentation. I have been impressed. Something I would like you to know is that I am a parliamentary assistant to the Minister of Citizenship, and what was announced in the House is related to the introduction of legislation in terms of advocacy and guardianship. I think you will find that there will be announcements being made some time in the late spring.
In terms of the multi-year plan, I think this relates quite well. I wonder how you feel about the obstacles and how that might be included in terms of the multi-year plan. I wonder if you could inform us of what you feel are priorities.
Mr Endicott: Certainly advocacy is one of the most promising ways of dealing with issues of community living, where people are going to be able to understand that they have an alternative. One of the things we expect is that advocacy, under the terms of the new legislation, will have a mandate to see people who are institutionalized, to get to know them, to allow them to know they have alternatives which are available to them if they choose.
Of course, once they choose those alternatives, advocacy again can be a very strong support to make sure they receive support in the community, which, you have been hearing this morning, is so often wanting. You have heard very effective parent advocates, but it is not everybody who has a parent who is able to make that kind of strong claim to the entitlement of the individual, so we do need other advocates out there as well.
Mr Malkowski: I understand you have a lot of advocates. You are talking about advocacy and empowerment projects. I am wondering if the parents and other disabled groups are involved and how those two are related. Do you find that often there are conflicts between the parent group and, say, the consumer groups? Do conflicts happen?
Mr Endicott: There is potential for conflict, yes. Inevitably, when the system comes to fruition, those potentials will materialize and we will have to deal with them, hopefully with sensitivity and by respecting, as I said earlier, the genuine advocacy that happens already in family settings and in other natural circumstances.
I am glad Mr Malkowski brought up the scope of organizations that are involved. I would like to draw your attention to the existence of the Ontario Advocacy Coalition, of which OACL is a member along with some 25 or 26 other provincial groups including People First, from whom you will be hearing this afternoon. I wish like anything that I could be here to hear that presentation. but unfortunately I have to go to a meeting of the Ontario Advocacy Coalition so I will not be able to. I think you can expect to have a very stimulating time with the delegates from People First this afternoon.
Mr Jackson: Orville, I thought it was an excellent presentation. Mr Malkowski has raised questions in the area I wanted to, but I wanted to add to his comment as well. Have you had an opportunity to examine the Weisstub report? You made veiled references to the third nature of guardianship; it is medical, and the right of an individual to refuse support treatment. Have you had a chance to look at that report? Not to deal with it specifically -- I am aware of the report's controversial recommendations. What is the nature of your association's response to the government vis-à-vis the Weisstub report and/or some preliminary advice before we get legislation on guardianship? Those are my two questions.
Mr Endicott: To answer your first question first, I have not had a look at the Weisstub report, if you mean to actually read it. My colleague Rod Walsh, legal counsel for OACL, who is in the room, was part of the Weisstub committee. If you have particular questions about that, he would be in a better position to answer them than I. He does have a copy, because he showed it to me. I have had a look at it, only in that sense of the word. He has promised me that I will have a photocopy of at least the executive summary and recommendations, which I am looking forward to.
This association does have an obligation to assist you as legislators and other members of the community to look carefully at the issue of substitute decision-making and what its implications are. We are very hard pressed to deal with all the things that have to be dealt with; even with a wonderful army of volunteers, sometimes it is difficult to be timely in our response to these issues.
One of the encouraging things about the advocacy announcement is that it is going to provide to advocates in the province not only funding to support individual advocacy but to support systemic advocacy, which would mean that groups like People First, like other community groups, would be able to have resources, which it does not have now, to think through these issues and come and think through them with you, which I think is very promising.
Mr Beer: It is a brief comment I want to make, if you would respond to it. In a sense, I think I am also making it for Gary to take back to the minister.
As we go forward in developing the advocacy system, just as we have been concerned that we do not want a service system that is going to work with all of the people with developmental disabilities or with physical disabilities, that we do not want that model to be purely medical, we accept that what we are trying to do in setting up an advocacy system is not to develop an overly legalistic model. I fully accept that there are times when the full force of the law has to be brought to bear, but I suppose one of the great concerns that often comes up in this discussion is whether those who are working within organizations, working with everyone we are talking about today -- there is still an essential advocacy role within your association, within any number of organizations. What I would hope, as we move towards setting up this independent advocacy organization, is that the approach it takes is to go in to try to make things better, to use powers of persuasion as much as possible so we do not end up with just something where, in effect, every time the advocate comes to the door there is a sense that, "Well, today we will have a discussion and tomorrow we will be in court." I want to measure my words carefully, because I do think there is no question that there is a need for advocacy, but I think we have to be very mindful that we are trying to help people here, not simply to spend more time in court or in quasi-legal systems.
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Mr Endicott: The area of adult guardianship is one that has needed to be overhauled not just for decades but centuries. It goes back almost to the origins of our system of law. It is really just now that we are saying: Should we not be focusing primarily on helping people determine what happens to them in their own lives rather than focusing on assigning somebody else to make those determinations? When the minister announced that the centrepiece -- that was her word -- of her proposal was advocacy, that gave us great hope.
The Vice-Chair: We have time for one final question by Mr Owens.
Mr Owens: It is more a comment, to thank OACL for the presentation they have taken time to pull together, and the presenters. I know it is not easy for people to appear before these committees, but I think you have provided the committee with lots of food for thought. You have certainly provided me with some direction I need to head in as a government member, as well as a member who deals with community living organizations within my community. I thank you for giving me that direction and some clarity on this issue.
Mr Beer: I want to join Steve in expressing our thanks, but I would also like to note -- and this is the bad news -- that Harry is leaving the OACL I believe at the end of the month, as some members of the committee may know and some of us who have worked with him over the years. I know the tremendous job he has done there, both for the organization and in speaking on behalf of those with developmental disabilities. The good news is that he is still going to be working with families and children. I know we all wish him very well in his future endeavours.
Mr Jackson: I would like to echo those sentiments.
If I take my legislator's hat off, as an active member of the Burlington Association for Community Living I would like to ask why we did not have specific recommendations in the report. I ask that question not as a legislator but as a member of the association. We can cope with whatever report we get. The oral presentation was outstanding.
Interjection.
The Vice-Chair: You had better put your member's hat back on.
Mr Jackson: Thank you for the interruption. It is appreciated. This is my brief time for closing statements, which is what you are in the process of.
I simply wanted to suggest to you that we followed the brief very carefully -- I have not had a chance to examine it -- and it will be helpful, but I would have liked to see some specific recommendations. I hope there will be an opportunity for us to get them in the next 24 hours, because we are into recommendation-writing tomorrow morning. I will not ask the final question, but had I had time it would have been for you to give three specific recommendations to this committee that you would like to see in the report. Time will not allow that, so I leave that with you. Thank you very much for your presentation and all those who came today.
The Vice-Chair: We have run out of time. I will take this opportunity to thank you as well, because we had a long, interesting and very informative session this morning. You have brought a lot of people to the committee who have had the opportunity to add to our information. I think that is very worthy. Once again, thank you.
Mr Zwerver: Could I just respond very quickly to Cam's challenge about recommendations?
The Vice-Chair: One minute.
Mr Zwerver: What we tried to do in this presentation was provide you with a very broadly based series of issues and the concerns that come out of that, rather than specific recommendations. That was done very carefully. Obviously, we would be pleased, on the basis of the discussions today, to come forward with some very specific recommendations, because all of these actually are based in recommendations. We would certainly be very pleased to do that, and thank you for the opportunity to be here.
The Vice-Chair: The only way we can entertain those would be if you submit them before tomorrow morning. Once we start getting into our final report writing, I do not think they can be added.
In any case, we must move on. We have a very tight schedule today.
Interjections.
The Vice-Chair: Could I have some order, please? If you are going to have discussions, would you please do that out in the hallway. We must have our next set of presenters before the committee. Could I have some order, members of the committee? To be fair to our next set of presenters, I would like to move forward.
ONTARIO HEAD INJURY ASSOCIATION
The Vice-Chair: We have the Ontario Head Injury Association, Ray Rempel, before us. I am sure he would like to get on with his presentation. I thank you for being patient with us. We are under a time constraint and I need to move forward. As I have reminded all of the witnesses, we have half an hour for each presentation. I am going to have to hold you to that half hour. You can divide that up at the end or in the middle for questions. Whatever way you would like to do that is your choice.
Mr Rempel: There are so many issues and items we would like to get into with you specifically, but we felt we had to step back and try to make a point more strongly, and try to make the point in such a way that the minister would understand that a lot of us are used to skating uphill but it is a tiring process. We need to have a much clearer dialogue and understanding between ourselves, as people who are of that vulnerable or fragile population and those of you who sit in the position to change situations for ourselves.
The mission of the Ontario Head Injury Association is to develop an environment within the province of Ontario that encourages people who live with the effects of a traumatic brain injury to recapture, to the greatest degree possible, the most productive lifestyle. Such a changed environment includes the development of educational, avocational, vocational and living opportunities of equal value to persons who live with the effects of traumatic brain injury as are available to the population at large within Ontario; and further, to alter the attitudes and understanding of society regarding the importance of the prevention of traumatic brain injuries.
I would like you to keep that in mind as we go through this brief.
Of the five stated outcomes that follow the mission statement, the two germane to this presentation say, "to significantly increase the number and types of resources that benefit persons who live with the effects of traumatic brain injury," and, second, "to undertake and encourage the development of research and educational initiatives as they relate to traumatic brain injury issues."
I guess one of my jobs today is to educate the honourable minister and those who work with her.
The original announcement by the minister to put on hold the deinstitutionalization process was a tremendous blow to the administration of the Ontario Head Injury Association, to the families who work with family members, and to those who have sustained injury to the brain. I will get into that in a little more detail later.
To provide you with the rationale for the statement that it was a tremendous blow, it is important for you to recognize that within the developed world and even within support agencies to the Third World, there is one common area of agreement that is a cornerstone of change, that is, to ensure to the greatest degree possible a most productive lifestyle for persons. That such a lifestyle could be considered as a possibility within institutional walls for a person capable of growing and living outside of those walls is reprehensible and näive.
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Most devastating of all, in our thinking, was that in the past decades we have had to attempt to influence governments whose priority sometimes perhaps seemed to be more the economic viability of the country or the province than concern for disenfranchised Canadians. But even within that context, they worked with us to the extent that we could develop an interest, and strides were made. Tremendous gains in fact, including the bill in question, occurred within that context. Now in 1990-91 to have a social democratic government put that deinstitutionalization process on hold without presenting any substantial or horrifically validated reasons for the move is devastating and crushing to those of us who are directly affected by the move.
The most immediate and persistent rumour which has gone through the head-injury community and eroded confidence in the minister of the new government is that the freeze was the result of presentations by affected unions and their employees, more concerned to protect their status and wages than caring about the people they, to this point, have been purportedly serving.
Government, advocacy groups and those in the position of providing opportunity for the people in question must always diligently safeguard the rights and the safety and the humanity of what can be described as a subtly fragile and vulnerable clientele. But to callously and with disregard simply change plans and direction creates confusion and havoc and fear in individuals' lives. For some already fragile people who were in transition at the time of the announcement, it is just totally unacceptable.
The minister and her staff need to be reminded that change, if needed and if the political will is there, can occur without shutting down the process. In fact, as initial experience is evaluated, one would think that ongoing change in a productive manner would be one of the anticipated outcomes of such a project.
It is important that the minister and her staff recognize that a significant portion of persons affected by this transitional process are persons who in fact live with the effects of acquired injury to the brain. I want you to understand this, because the population of fragile people comes with a whole host of problems they cope with. Such persons as we are talking about here, with traumatic brain injury, should be recognized as having many and frequently most of their pre-morbid capacities, and much of the knowledge still intact and within themselves. The brain cells destroyed through trauma of course reduce the capacity to act out and/or perform with the same degree of intensity or skill as was the case pre-morbidly. However, the non-affected areas of the brain, as best they can, continue to function, and in the appropriate environment such a person will continue to develop in a productive manner. Likewise, unfortunately, in a counterproductive setting, that person will as well continue to develop but generally in a counterproductive manner.
For that reason alone, it is imperative that never again will persons who live with the effects of injury to the brain experience institutionalization as a first-choice option by health care professionals and uninformed family or friends, and that those already institutionalized will be provided support with appropriate skill and knowledge to assist them to live as capably as is possible with the skill and knowledge developed to assist our population.
A friend of mine and of the Ontario Head Injury Association, a man in his late 20s, has resided in an Ontario psychiatric facility for the past four years, not because of psychiatric illness but because of his inattentiveness, a common deficit following traumatic injury to the brain. Were he here this morning, he could dialogue with you at par on any issue you would want to raise. Inattentiveness, however, is his primary deficit. Even without life-skills relearning, he is capable of much of his own daily living requirements. Unfortunately, inattention is a hazard to oneself on the streets of any Ontario city, stepping out into traffic specifically. Rather than an appropriate residential setting with adequate supports, we keep him in a safe psychiatric facility, and we do so because he does not have access to a residential program with appropriate supports and his mother is too elderly to work with him at home.
In 1989 we held hearings to determine the status of wellness of Ontario residents who live with the effects of traumatic brain injury, and he gave testimony. He said in part: "I can't participate in appropriate programs" -- here at the institution -- "because I am not yet a psychiatric patient. However, I live with psychiatric patients and if I stay here much longer I am afraid I will become a psychiatric patient."
In summary, it is of small solace to be told that the freeze has in fact been lifted. We trust that the minister, in an attempt to restore confidence in the population of persons we represent, will henceforth include us who live with the effects of injury to the brain, both through first-person experience and through the experience of supporting and befriending a family member or friend, to participate in any and all of the ongoing studies, discussions and decision-making that pertain to the treatment and planning for treatment of vulnerable adults.
Mr Owens: Without making any comment on the unsubstantiated rumour you have included in your paper -- and it is an unfortunate inclusion in your document -- I would like to agree with your statement about disenfranchised Canadians.
I had the pleasure of meeting the parents of a brain-injured child in my constituency. They had come in to speak with me about another issue, but very quickly the subject turned to the source of their problem, which was their child, 21 years of age, who had been attacked and was left with a serious brain injury. I felt a complete sense of hopelessness. As a matter of fact, I referred these parents to your association, on the types of services we could offer these parents in -- again, the words "respite care" come up, the type of retraining that is available, the level of diagnosis we are able to do. This young man was a computer technologist with Bell Canada and the likelihood of his returning to that occupation at this point seems to be very limited.
What do we do with these folks? Do we keep them on some level of social assistance? Do we create group homes for brain-injured people? I guess what I am asking you to let this committee know is what kind of resources we need to allocate to that disenfranchised section of the province and quite possibly the country, and how we specifically address their needs. Do they necessarily have to be different from the way we address issues which affect the developmentally handicapped?
Mr Rempel: In regard to your first comment, we did not just glibly put that rumour in. We put it in because within the community of people affected, that is reality. We are not at all implying that that was the case, but we are saying that rumour went through that community quickly. You had better believe that that is what quite a few people believe. Fact or fiction is not the point. That is reality at this point, and you need to be aware of that. We did not indicate at all that that was the way it was. Where it started, I have no idea, but that is the way it went through our community, and I think it is our duty to let you know that that is what occurred. It does not say that is what it was, it says "the rumour." We will leave it at that.
I appreciate your question about the resources. Coming out of the 1989 hearings were 33 recommendations. As well as those 33 recommendations, there were four specific projects that we felt had to be initiated in order for significant change to really occur. With the previous government we were able to initiate one of those four and there was a sensitivity to dialogue and work towards the additional, but one of the problems of a change of government is that things kind of go on hold.
The summary document of the hearings went out to a number of the ministers, I would say to about eight or nine ministers, who would have reason to relate to head injuries. I would be happy to provide this committee with that. It indicates the kinds of opportunities that are inexpensive opportunities, but opportunities that do not exist presently for people who have sustained injury to the brain.
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Independent living is definitely a place to start, and we are right now pretty much precluded from participating in independent living because we are not completely self-initiating. In fact, one of the common deficits is a lack of ability to initiate, albeit the ability to perform. It is just the nature of the brain, that once it gets twisted and torn and those synapses get scarred, one of the first things to go is an ability to initiate. However, once initiation occurs, then performance is there.
That is something that science is still a number of years away from being able to cure, so programs need to be developed to provide appropriate vocational and avocational opportunities for our population. The literature is there. The one thing that there is not is a dearth of literature on the kinds of things that are done in other jurisdictions, but really are not a part of any province. Our neighbours to the south and some countries in Europe are much ahead of us in Canada.
Mr Beer: We have a short period of time, and I wonder if we might just focus on the funds that were set aside. I would be interested in knowing and I think it would be helpful for the committee. If I recall, it was something in the order of $7 million from the ministries to begin to provide help. I am just wondering how that is going.
Is that beginning to get into the communities and can you see some good things happening there? In building on that, what are some things that perhaps we ought to be looking at? Just as part of that, in terms of the approach to the head-injured community, should that be enveloped within and very clearly within the long-term care initiative, or do you see this as something that would be independent of that?
Mr Rempel: One of the real dilemmas that we have is that money going to traditional agencies does not really help, even though it is earmarked for head injury, because there is such a lack of education and there is also a misunderstanding. The kind of rehabilitation that occurs in rehabilitation hospitals is not the kind of rehabilitation or support that people with a blow to the head require, and so a physiotherapist is not generally of utmost need for that person. In response to Mr Beer's question, the money is there, but too frequently it is being put into traditional programs that are attempting to provide service and we are trying to fit that round peg into the square hole and it ain't working.
Neuropsychologists, for example, are probably the most important health care professionals for this population. OHIP excludes payment to neuropsychologists outside of a hospital setting. In regard to most programs funded by the Ministry of Community and Social Services -- no reflection on your past work or on Mrs Akande -- but the people out in the field have been taught to think, "Keep this program affordable." A neuropsych is, according to the people in the field, not an affordable health care resource, and so we will hire physios and occupational therapists, but we will not okay neuropsychs. That is some really elementary thinking, but that is the level that we are at with head injury services.
We are hoping that the new government will continue to look to the provincial Acquired Brain Damage Committee, because one thing that Mr Beer and Mrs Caplan did that we thought was very positive was to listen to that advisory committee and to begin to act on some of the recommendations. We trust that these ministries will discover it and will continue to listen to it. But we are dealing with a population that is described really by the leading researchers and clinicians as the research being in the pre-penicillin era, so there is still an awful lot to learn about helping folks who have had their brains jostled about to really get back into a functional and enjoyable capacity in life.
Mr Malkowski: Your presentation has been helpful. Previously I worked as a vocational rehab counsellor and I found from my own experience that it was very hard to find services of a neuropsychologist in Ontario. It is also hard to predict if the person has a temporary head injury or a permanent head injury, so it makes it more difficult for the rehab counsellor to predict what kind of services would be required. I understand there is also a lot of stress on the families, having to take a lot of responsibility for those people who have been brain-injured. There have not been appropriate social adjustments and, as well, there is a problem with their thinking skills. I understand that we really need some kind of service, for example, attendant care to watch that person, to make sure that his rights are protected or the person is protected.
Can you make any comment on that situation? Do you feel that, if attendant care or neuropsychologist services were expanded and funding was provided for them, that would be helpful?
Mr Rempel: Yes. I think that the neuropsychologist really needs to be used more for educating the health care workers and professionals who work with this population than for further assessments on individuals in this population.
In response to the observation about permanent versus temporary disability, if you look at the neuropathology, you are born with all of the brain cells that you will ever have and you only lose brain cells throughout life. A line that should be interesting to you is that we all are shaped partly by the blows we have sustained to our heads from infancy on. Unfortunately for some, the blow creates a system of disturbance and damage that goes beyond what the brain can absorb and still have them function acceptably in society.
What happens presently is that damage will occur and generally a good neuropsychologist can look at that damage and can begin to assist this person to develop strategies to improve her quality of life, not necessarily to get her back at her job as a computer analyst, but to make good progress. But because we generally do not have access to somebody who understands the neuropathology and then the behaviours that are resultant from the neuropathology, what happens is that apparently the person begins to layer additional psychological problems on top of that base damage, because that base damage has not been identified correctly and the person provided with the appropriate opportunity for continuing development. We are laying problems one on top of another and, by the time she gets into one of the few transitional living centres in the province, she has such a host of issues that she is frequently not acceptable and ends up in a psychiatric facility, when really she could have been back at home as a functioning member of society.
What was the other question?
Mr Malkowski: If we could expand the attendant care service.
Mr Rempel: Yes, an informed attendant care service.
Mr Malkowski: What percentage of the people who are brain-injured is a result of accidents? Also, what percentage is a result of sickness, tumours, that kind of thing?
Mr Rempel: Approximately 78% of the injuries are vehicle-related. That would be bicycle, motorcycle, etc.
Mrs McLeod: I will make my question very brief as well, although I think this is a particular field in which we need to have much more awareness and information. I live in a community in northwestern Ontario which would be in terms of population a middle-sized community. My brief experience of direct work with brain-injured individuals was that you could receive physical assessments and physical therapy but virtually no psychological assessment or assessment that would identify what skills are remaining and how those could be utilized. I was hoping to hear you tell me that that is an exception because of our location, but I am hearing you say that is more the pattern than it is anything else.
Mr Rempel: It is that way in downtown Toronto.
Mrs McLeod: Assuming that we can get beyond that and recognize those needs -- and your example is close to a totally different type of example but a similar kind of situation that I experienced of residual skills being there and being unrecognized -- to recognize what skills are there, to do that assessment, would we not need to go even beyond neuropsychology and break down some of the barriers between traditional service, for example, learning assessments, educational assessments, the kind of support that might be needed and would traditionally be offered to physically disabled people rather than brain-injured people?
Mr Rempel: A prime example of that is that in any foray that we try to make into the Ministry of Education, for example, school boards say: "We don't have a problem. We have Bill 82," and we say: "You have a tremendous problem. If you want to really help that person receive an appropriate education as opposed to providing a service to that kid, there is a hell of a difference. If you don't recognize the problems that this kid has besides the physical limitation, you're not helping that kid."
Mrs McLeod: And if the brain-injured individual is beyond school age, then I would think there is a real problem in accessing traditional learning assessment services.
Mr Rempel: Definitely, except in private practice which is not covered by OHIP.
Also, in response to Mr Beer's question about long-term care, we would love to feel comfortable that persons who sustained injury to the brain would receive appropriate opportunity through the long-term care initiatives. Just based on what we have been talking about here, the lack of understanding that even the health care professionals have, including general practitioners, we feel that we collectively, you politicians and those of us who work with the population, are in for some really unpleasant surprises when we attempt to have people who understand physical disability provide appropriate service to people who have sustained a blow to the head. We trust that there will hopefully be some flexibility there as that process is designed.
The other thing I would like to say is that this really is a large population. I can assure you that each of you in this room, although you may not have thought about it, either grew up with somebody who had sustained an injury to the brain or know somebody now as an adult. I know that is the case. You just think back to some kid you were in school with who was "strange" and was a real "behavioural problem." The list goes on, but I can assure you that you know somebody. The prevalence is really significant in this population.
We trust that you will continue and even speed up the process that we began with the previous government. We are sure here to support you and to back you in that.
The Vice-Chair: Unfortunately we have run out of time. I would like to thank you for making your presentation. We are adjourned until 1:30.
The committee recessed at 1235
AFTERNOON SITTING
The committee resumed at 1336 in committee room 2.
CANADIAN UNION OF PUBLIC EMPLOYEES LOCAL 2191
The Chair: I call the meeting to order. I would like to call on our first presenters, CUPE Local 2191. Welcome to the committee. For the purposes of Hansard, identify yourselves on the record and then you are entitled to a half-hour for your presentation. The time is entirely yours. If you would like to leave some time for questions by members of the committee, that is within your rights as well.
Ms Faucher: My name is Francine Faucher and we are representing CUPE 2191.
Ms Maye-Chandler: I am Pat Maye-Chandler. I think we would like to start the presentation. We are going to be doing it together this afternoon. I will be doing the first part and then Francine and then in the recommendations I will do some again and then Francine. I think we will have plenty of time for questions.
On behalf of the members of CUPE 2191, employees of the Metropolitan Toronto Association for Community Living, MTACL, we would like to thank the committee for providing us with the opportunity to outline some of our concerns about the state of the social services in Ontario. In this brief we will present relevant background information and provide you with an overview of the problems as viewed by the members of our local.
It is no secret that community-based services for people with developmental disabilities are in the midst of crisis and that crisis has taken the form of an inability to provide urgently needed services. It is a crisis which can be seen in high rates of staff turnover, a lack of quality care provided to the individuals with developmental disabilities, wages which in some cases are literally below the poverty line, and hopelessly long waiting lists for existing programs.
A brief look at the situation in adult residences within the association, MTACL, will give you some idea of the extent of the problems. Last year our employer provided services to more than 4,800 individuals. In the adult residential services, there are 252 spaces available. At the end of 1990, there were 605 individuals from the community who were put on a waiting list for a space in a residential setting. Of the people on the waiting list, 198 were considered to be priority, meaning they were likely experiencing abuse or neglect, had aging care givers or their care givers had died. We offer these figures to reinforce our primary message to you today: this government must proceed with the ministry's multi-year plan but only after it has addressed the concerns of the present system.
We must also state clearly that expanded government funding is necessary for these services to survive in the coming years. Unless this happens, equitable wages and a safe environment for workers and their clients are simply unachievable. It has now become almost commonplace to hear reports of staff experiencing threats of physical assault and attacks on other residents or themselves by individuals who are often dual diagnosed.
Providing services for people with developmental disabilities has traditionally fallen on the shoulders of three components of our society, those being family members, provincial institutions and community agencies. The main drawback of institutional care has been how it limits the access of people with developmental disabilities to community and family life. Families often turn to these institutions when they discover that they are no longer able to provide for the physical, emotional, educational and social needs of family members with these disabilities. Community agencies have the unique advantage of providing specialized and necessary services without imposing the restrictions and isolation of institutional care. They are, if you like to say, the happy medium.
Over the past 15 years or so in Ontario, the ministry has pursued a policy of deinstitutionalization, the net result of which has been that many of these individuals who were previously served in residential institutions have been moved to community settings. All of this has taken place during a period in which the demand for services from the community has greatly increased. While we firmly support this expansion of community agencies, recognizing the many benefits it can provide, we must emphasize that inadequate funding has severely restricted the level of services, such as the need for advocacy, housing, employment, education, public awareness and recreation for these individuals as well as the community at large.
Ms Faucher: Probably, more than any one issue, the whole question of staffing has taken on a sense of urgency within the social service community. A severe shortage of qualified and experienced staff combined with continual turnover of existing staff has made the provision of quality programs next to impossible.
It is clear to us that when existing staff are offered wage settlements of 1.5%, the message sent is that their work is considered neither important nor valued. The other message is that people with developmental disabilities are really not important members of our society. High staff turnover in community agencies is the direct result of low wages and high levels of work stress that we face on a daily basis. Sadly, the service provided by casual staff is often nothing more than custodial care. To make matters worse, workers in these agencies doing similar work as Ontario government employees are paid significantly less. Right now in Ontario there is a wage difference of 20% to 30% between ministry and community agency staff.
As our representatives at Queen's Park, we cannot impress upon you strongly enough that qualified and trained staff must be in place if residents living in institutions are going to receive the quality of care and services they need once they move into the community. We must not set them up for failure. Leaving familiar environment and people is often a traumatic experience. All supports must be in place before the move to minimize these traumas.
In our society, more and more parents have chosen to care for their children with developmental disabilities. They are, however, sometimes in need of time away from their children or are faced with a crisis situation where they need to have access to a parent relief service. This service is available in a few of the group homes within MTACL where a bed is allocated for this purpose. As you can imagine, the waiting list for this particular service is very lengthy.
A parent relief service is urgently and greatly needed in our community. However, it should be mentioned that in order to adequately meet the needs of the parents of developmentally disabled children or adults, this service should operate independently -- and I do stress independently -- from the group homes. This would ensure that appropriate assessments could be done by trained staff to provide the necessary supports to the parents and the individuals requiring the services.
We, the community, the government and advocacy groups must all put ourselves in a position to provide the appropriate community alternatives to the families and the individuals who have developmental handicaps. We believe that You've Got a Friend review of advocacy in Ontario must be implemented to ensure that advocates independent of the agency providing the services are available to ensure that all people with developmental handicaps are treated in a fair and humane way at all times.
While we have only briefly touched on some of the problems facing communities agencies, we have, hopefully, given you a sense of how urgent these problems really are. As things stand today, it is clear that everyone is suffering, the people with developmental handicaps, the families, the front-line workers and the community. We are in a crisis situation. Staff turnover, too much dependence on casual staff, obscenely long waiting lists, wage disparity between ministry and community staff, aggressive and threatening behaviours, again, are some of the more urgent problems which need to be addressed now.
Ms Maye-Chandler: We hope you will agree with us that our ultimate objective is to provide the highest quality of care possible. To that end, we recommend the following.
1. Staff should be hired in accordance with the current demand for services for people with developmental disabilities. Staff-to-client ratios must not be arbitrarily decided. Each setting must look at the particular needs of the individuals presently in their setting; for example, medically fragile individuals and those with histories of aggressive or disruptive behaviours. More staff time should be available to develop ongoing program activities to ensure teaching of life skills and promotion of independence for the population we serve. Existing programs must be on a continual expansion in order to meet the community need for today and future services.
2. Massive public education for staff and the community to ensure that integration occurs whenever possible and to make sure that all vulnerable individuals are protected.
3. Staff salaries must be increased to the levels paid to provincial government employees in similar positions. This would require an increase in government funding to enable agencies to negotiate appropriate wage settlements. Equitable wages would encourage qualified individuals to enter our industry and would retain the services of existing staff which will increase the quality and consistency of services being delivered.
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Ms Faucher: 4. Independent advocacy groups must be recognized and implemented.
5. The document labelled Transitions must begin with implementation at stage 1. All individuals must live in the community regardless of the severity or type of their disabilities. Newer models must be developed to meet their needs. Staff must be adequately trained to provide these services. Resources and supports must be easily accessible to families, staff and agencies.
6. Government inspections need to be done on a regular basis. Inspections of all settings providing services for individuals who are developmentally disabled must be occurring on a regular basis, at random and without previous warnings.
Once again, we thank you for this opportunity to speak today. We will answer any questions you may have.
Mr Owens: I would like to thank both of you for your presentation. It is always nice to get that third component, the view of the workers in the actual situation as to what they see going on. I would like to ask a couple of questions with respect to recommendation 6, about government inspections being done on a regular basis.
Am I to believe by this comment that, first of all, inspections are not being done on a regular basis, and second, that there is some type of forewarning that is given to the particular home or group that is being inspected? The second question I have is with respect to parent relief. Again, we talked earlier about group homes having perhaps one bed available for respite care. I would like you to perhaps further comment on how that affects your role as workers in the group home and also how it affects the parents of the children or adults who are on what you determined is a lengthy waiting list.
I am wondering what kind of recommendations you could make to this committee as to how we as a committee can recommend to the government on improving that role as an aid to going forward with the multi-year plan devolving adults and children from institutions.
Ms Faucher: As far as the parent relief services are concerned, we do have a few group homes within the MTACL where there is a bed for parent relief service. What happens is that a parent brings the child, who may be an adult or a child, to the group home where other individuals reside. I am sorry; I am very nervous.
The Vice-Chair: Take your time, but we do not have a lot of it. I caught myself there.
Ms Faucher: The reason I was emphasizing parent relief service to be independent of the group homes is not to impose on the privacy of the residents who live in those group homes. However, the service is needed and there are more and more parents who do choose to keep their kids. After 25 or 30 years of keeping the kids at home without taking a holiday, they need to have some time away. Now, how do I propose this solution?
Mr Owens: What type of recommendations could you make to the committee as workers in the situation to enhance the program? Do you see it going in a particular direction that it may or may not or should or should not be going in?
Ms Faucher: My idea is, in the group home setting, to have beds for parent relief service where the staff would be trained to take assessments and meet the needs of the individual on a short-term basis as needed. It would be not a residence.
Ms Maye-Chandler: If I can answer that as well, I work in the parent relief unit for children's services. Currently, we serve two different individuals. We serve clients on a regular, scheduled basis of parent relief, but we also serve clients who come in in a crisis situation. I have had clients who have come in after they have beaten up their mother and been beaten themselves and we have had to soak them for a long time in the bathtub just to find out what the damage is, and I get half an hour's notice.
Our employer has tried to change that and give us as much notice and knowledge as possible, but currently we often do not get any information except that a client is coming in in a crisis situation. The other thing is that the other community agencies that we are providing parent relief to, specifically for children, are now closing down, so where I work, we are it for the community. That is very sad because the idea is to try to help keep these individuals in the community with their families, and yet they are not getting the supports and in fact they are closing down.
Mrs McLeod: I would not mind pursuing the problem of some of the respite care facilities being closed down, because I have heard that on other occasions, but I think I will focus instead on the question of training, because you mention in your brief that adequacy of training is absolutely essential. Could you say a little bit about your feelings on the training that is available now? Are there enough programs? Are people interested in going into them? Are there any opportunities for extra training after you are out in the field?
Ms Faucher: There is opportunity for extra training out in the field, but now a lot of times, because we are working so short-staffed, your training is by doing. You are filling in and you are expected to fill the roles without knowing what the objectives really are.
After being in a position for a short or lengthy period of time, depending when the courses are offered, then you go into a classroom setting and take the theory aspect of it. So the training is limited. The turnover is so high that the training is continual. The people who have been there the longest are always training new staff. But if you are learning from me and I have a lot of bad habits -- the training has to be more in depth in order to meet the needs. What we are finding is that a lot of the care that our individuals do get is custodial, without engaging in more independent living skills.
Mrs McLeod: Would most of the people who are working in the group homes be community college-trained graduates?
Ms Faucher: Some.
Ms Maye-Chandler: When I started working for the association 15 years ago, I was only in the second group of people to go through a community college program. Before that it was training in the institutes and it was hands on. Sad to say, I see it is going back to that. The community colleges are not able to attract people to the programs because of the shifts, the wages and all these things, so it is coming full circle again in terms of that. That is very sad.
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Mr J. Wilson: Just briefly, we have heard not only from you today but from other groups about the wage gap. Frankly, I do not really know what the wages are. Do you have sort of an average salary scale, for example, in Metropolitan Toronto? Second, what are the staff-resident ratios on average?
Ms Faucher: The staff-to-resident ratio on average is one to three or one to four, depending on the level of independence the individuals have. The wage gap is quite high. We have individuals who work full-time for the association. Their salaries start at $17,000. In the residential setting, I believe it goes up to $28,000.
Ms Maye-Chandler: I have worked there for 15 years and I now make about $26,000 on top of working weekends, afternoons and all that kind of thing.
You asked the question about staff ratios. In residential, there are kinds of guidelines which need to be expanded and changed, as we said. We feel that there needs to be more on the guidelines of the needs. We have group homes now where children who need to be tube-fed are known to have aggressive, destructive behaviours. Also, Francine and I are both in the residential setting, but we have members from vocational services in our local. There is a great deal of concern in terms of giving some kinds of ratios in staff to clients there. Some groups have 20 clients to one staff in their vocational settings, some have 10, some have eight. There are no basic guidelines in the vocational area.
Mr J. Wilson: I thank you, because it is helpful to hear the actual figures. We have heard a lot of statistics today on percentage gaps.
Mr Malkowski: Your presentation gave us a broader understanding, but I have specifically two issues that I would like to focus on. Can you tell me roughly what a shift schedule would look like in terms of how many staff are working and how many clients would be in the residence, for example, in the morning or afternoon or evening shifts?
Ms Faucher: Again, it depends on the residents. Our residents are an aging population now. We do have quite a few group homes where the residents are retired. In these homes we have one staff for six clients. When the other residents who are at work during the day come home around three, there are usually two staff on, but again it depends on the need, from maybe three staff to eight residents. It depends on the setting.
Mr Malkowski: If staff call in sick or arrive late or you have a staff member who quits, does that force the other staff to work a lot of overtime?
Ms Faucher: Depending again on the setting. In a lot of the homes, when staff call in sick or are late, they will call a relief list of individuals who can be called in or we ask our part-timers. But most often, especially these days, we are using more and more agency staff. That is what we were referring to when we were talking about casual help. These individuals are mostly trained in the health care domain to provide the immediate needs. That is the dilemma we are in right now.
Mr White: I am struck with the kinds of long-term effects you are talking about here in terms of the poor remuneration. You are talking about an incredible turnover; basic services only being provided by health care aides; feeding and continence issues. I am wondering if you have comparative figures for OPSEU workers in the residential facilities. What is the relative wage gap?
Ms Faucher: The information I gathered was between 20% and 30%.
Mr White: And this issue has no doubt been addressed by your union on many occasions.
Ms Faucher: Definitely.
Mr Jackson: I deeply appreciate this brief and putting it in recommendation form is very helpful. I wanted to thank Pat for her candour but after 15 years, to be making that wage, I wanted you to know I have no consolation for you, of course, that with 15 days' experience the waitresses in this building make more money than you. The waitresses in this building are earning more than you are, with full benefits. There is a lot of disparity beyond the own-industry example is my point, but thank you for your presentation.
COMMUNITY LIVING ALTERNATIVES SCARBOROUGH
The Acting Chair (Mr Miclash): Our next presenters are the Community Living Alternatives Scarborough. Welcome to the committee. As you know, we have a half-hour presentation, whichever way you wish to break that down in terms of presentation and questions.
Mr Meldazy: Members of the committee, I would like to thank you for having me here today and giving me the opportunity to address you. My name is Bill Meldazy and I represent an organization known as Community Living Alternatives Scarborough, whose acronym is CLAS.
I would like to introduce some of our people here. Kay Anderson is our executive director and she is responsible for the administration and the operation of our group home; Bill Sparks is a member of our organization and also a parent of a handicapped child; Terry Francis, sitting in the audience, is the vice-president of our organization and also the mother of a handicapped child.
CLAS is a non-profit organization and a registered charity with Revenue Canada. Presently, CLAS has 42 members who are supporting developmentally handicapped children at home. The average age of the parents is 65, but some of them are in their late 70s with dependent children ranging in age from 19 to 45.
Our purpose is to provide supportive lifetime housing in the community for our children while our health permits in order that they not suddenly have to be placed in unfamiliar surroundings. In this way, we are able to prepare them for their eventual separation from us.
CLAS was incorporated with the intent that it would address and reduce long waiting lists for residential placement. Most parents have been on a waiting list for more than 10 years with no hope of placing their child in sight. This parent group took an active role in forming our association by planning, fund-raising, holding meetings, political lobbying and whatever.
CLAS's objective is to ensure that our children will benefit from participating in a positive and supportive environment which will encourage growth and independence. Their parents and family members will have the new experience of feeling secure in the knowledge that their family member is comfortable and well cared for. The parents have never complained about keeping their children at home, but life has passed quickly and now help is badly needed.
No parent of a handicapped child is ever free. They for ever worry and are still doing parent-child things, such as dressing them, driving them and teaching them, even after more than 30 years, nor are they able to retire once their children become adults, as are parents of normal children. Many parents have no supportive family or friends to assist them and must sit at home with very little opportunity to get on with lives of their own. There are parents who have never had a day off or a holiday without their child.
Handicapped children are now living longer, primarily because they have no social problems such as drinking, smoking or overeating, but also because as children they are under very little stress due to their dependence on others for assistance, advice and direction. They display stress only when they have displeased someone or are unable to do what is expected of them.
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Some years ago, institutions became acceptable because parents felt that their child would be cared for in a reasonable manner in these establishments. However, those presently being discharged from these same institutions are displaying emotional problems when they are suddenly thrust into a new social environment and expected to fit into a family atmosphere after having spent their entire lives in an institution.
It is imperative that we now start to introduce transitional programs for those being discharged from institutions which will give them the tools they need to adjust to a totally new and foreign lifestyle. CLAS is prepared to offer whatever assistance we can to support such a program. The basic necessities of life are not enough. Those people must be given a place to work and to play and, above all, they must be given the necessary tools to enable them to be integrated into society to the greatest degree possible.
Following are histories of a few of our members, whom I know personally, and their children who are still living at home.
Mrs A has been a widow for 18 years. She is 68 years of age and her son is 39. He is attending Monsignor Fraser College in a literacy class for part of the day and is home on all school holidays. Mrs A is also the grandmother of a 30-year-old Down's syndrome child.
Mrs H is a widow, 70 years of age, who has a heart condition. Her son is 42 and working in a sheltered workshop. He too has a heart problem.
Lorne is 78. He has such severe emphysema that he must always carry an oxygen tank and wear a mask. He must also sleep with this equipment. His wife is 72 and his daughter, who is 30, works in a sheltered workshop.
My son Glenn is 33 and now lives in our first group home at 9 Courtlands Drive in Scarborough. At the time Courtlands opened, Lorraine and I did not anticipate Glenn's living away from home for some time. However, when we asked our son if he would like to do so, he wholeheartedly agreed. He had the best of both worlds to choose from and the choice was his. In late September 1989 Glenn moved into our group home and adapted to the change immediately. Lorraine and I went on a holiday last February without children for the first time in almost 34 years and felt quite lost for a couple of days. Lorraine died suddenly in April 1990, at the tender age of 63, just seven months after Glenn entered the home. I alone could not have coped with Glenn and I firmly believe that the events in my family were prearranged by our Saviour. Lorraine's death has caused many people to reflect that perhaps time does run out before we expect it to and before we are able to make our preparations.
CLAS has received approval in principle from the Ministry of Community and Social Services and has been given firm approval from the Ministry of Housing under the federal-provincial 1991 program for funding for another group home to accommodate six persons in 1991. We have 11 parents, many of whom are seriously ill, who are very anxious to see their children secure as soon as possible and we expect our new home to help in this regard.
One of our parents stated that membership in CLAS was like having an insurance policy in that the parents are assured of having someone to take care of their child when they are unable to do so.
CLAS's board of directors is planning to expand beyond the services we are presently offering. Ultimately, the organization intends to serve a maximum of 50 to 60 lifetime residents and some of the programs being proposed for the future are residential programs, respite care, service for complex needs, employment support and semi- and independent living programs.
In closing, I would urge you to continue on your present course of deinstitutionalization. While there are certainly weaknesses and problems which need to be addressed with respect to this process, it is very clear that large institutions are not a viable alternative to community living residential programs such as the one offered by CLAS. Institutions are simply not equipped to enable our disabled population to realize their full potential and we cannot continue to deprive them of what is surely one of the most basic of human rights.
Mr Owens: I would like to begin by thanking Mr Meldazy and his group for the presentation this afternoon. CLAS is a fairly unique organization that exists in Scarborough. Could you tell the committee a little bit more about how you operate and the kind of parental assistance that is rendered to the clients within the group home? I think it is an excellent example of how community-based group homes can be run and I think perhaps we should be looking to CLAS as a model when we start looking at community-based programming.
The second issue revolves around the senior parents of adults and the kinds of supports that you see lacking within the community as of today in 1991 and what kind of recommendations you think this committee would need to hear to present to our government with respect to dealing with the population that you addressed in your report.
Mr Meldazy: The parent support. We are responsible entirely for what is happening in the home today. Our board of directors is composed of parents in the association. We have a hands-on on what is happening in the home. We assist our staff, our executive director in every which way possible. We assist in furnishing the home. We assist the staff when it is necessary, when they require assistance, such as when they might not have adequate staff on hand. We do a lot of the landscaping around the house. We just have a real hands-on situation there.
Mr Sparks: I think CLAS is relatively unique in that the composition is predominantly parents who are moving into what is euphemistically called their golden years, my wife and I probably being one of the exceptions since our daughter is only 18. We got involved for advice and support, but I agree about the insurance policy. We are not going to drop our membership, because time does slip away fairly rapidly.
A group of parents in Scarborough had continuously expressed their concern and in some cases their panic about what was going to happen to their offspring because they were getting progressively more ill. One of the two partners of the family would disappear and the person who was left would be doing his or her best to cope. They worried about what happens at the next stage when they are gone and, in many cases, there just are not other family members available.
The kind of nuclear family that we looked at 100 years ago with everybody in the farmhouse just does not exist. The closest relative might be in Vancouver or somewhere, and to take a person who has lived in the community for 40 or 50 years and ask them to move somewhere else to be perhaps in a group home near a sibling would be extraordinarily difficult. So the group on its own, with support, created the board structure: what its membership would be, who could belong and who could not. I think its strength is the fact that it continually monitors what it is doing and where it is going.
One of the criticisms that has been forthcoming for some of the larger agencies is that when they get too large there comes a feeling of impersonality; no one knows to whom individuals are accountable. I think having set a maximum of the number of people over a few years that they can handle is one of the strengths of this group. They are not going to try to solve this problem for everybody in the world; they are going to try to solve it for their own group and then offer their expertise for other people who have the same needs to begin their own groups that they can monitor.
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Mr Owens: With respect to the comment about ongoing evaluations on the effectiveness of your programming within the group home, can you tell me how you go about doing that and what you do with the results after the evaluation is done?
Mrs Anderson: We have our independent program planning in which we involve the parents. At that time the parents also have a say in what their sons and daughters are involved in, what other programs they would like to see and their impressions of how the house is being run and functioning.
Mr Beer: Your presentation was very interesting. It seemed to me that you underlined an area that is very important for us to understand centrally in the work that we are going to be doing in coming up with recommendations around the older parent. I am particularly interested in and had the experience of meeting with a couple of groups over the last year, one of which was based in Kingston, which had come together to try to find and develop linkages, particularly among groups where we were talking about parents who were over 60 or 65. I think you described the kind of fear and panic at times, where suddenly the parents' health could change very drastically and what would happen.
Are you aware of other organizations like yours, or do you see a need for perhaps particularly older parents to come together around some issues that while they may touch everyone are even more key for you, and are you also part of the Ontario Association for Community Living? Do you link in that way as well?
Mr Meldazy: Yes, we are associated with the Metropolitan Toronto association and indirectly, of course, with the Ontario association. We are members of the Metropolitan Agencies Representatives' Council, and I believe there is one other organization in Metropolitan Toronto that is similar to ours. Is that correct?
Mrs Anderson: They are parent founded, parent based.
Mr Beer: I was dealing specifically with older parents.
Mr Meldazy: We are not aware of any other association dealing directly with older parents. We have spoken to people in the Richmond Hill area, other families who are interested or who have seen our program in operation. We have spoken to them and they are presently trying to form a group of their own. We have had requests from other parents who have more severely handicapped children than we have at the present time.
I think what we have to get across to these other parents is to try to encourage them by some means to get together and form an association. We would be only too happy to assist them and give them everything that we have learned and tried over the years. There is a very definite need, not only in Scarborough. There are a lot of parents in Scarborough who are reluctant to come to us. I do not know why.
Our organization has grown very quickly in the last two years. There are other people who are scared to come forward. A lot of parents are scared to come forward because they do not want to be publicized. I feel that we have got to try and break through, we have got to get through to these families. We would be only too happy to assist them any which way we could.
Mr J. Wilson: Bill, on behalf of all members of the committee here today I want to extend our condolences for your loss in your family. We certainly appreciate that you have brought the message to us in a very personal way and we appreciate your being here today as with the other witnesses.
I do have a question, though. I too have a CLASS in my riding: the Clean Living Association of South Simcoe. You may be familiar with it. It just started up a home with five residents. I have some background in the length of time it took them to get the home up and running and I was wondering, in your particular case, how long does it take from the time you think you have established a need for a group home to actually get it running? It is important when we are deinstitutionalizing people or taking them out of the parental home.
Mr Meldazy: We got incorporated in 1988. Immediately upon our incorporation we started to pursue the necessary channels to get the funding. I guess from the time we made our first application --
Mrs Anderson: It was 1987.
Mr Meldazy: When we first met it was 1987, but I believe it was 1988 when we submitted our application for funding to the ministries' offices. We received approval from both the Ministry of Housing and the Ministry of Community and Social Services about October 1988. The funding for the home, cash in hand, was not available until January 1989. We purchased our first home in January 1989 and we opened up in September. So let's say about a year and a half from start to finish.
Mr J. Wilson: That is very good. You must be good at working through red tape.
Mrs Anderson: That is not the norm, though.
Mr Meldazy: That is not the norm, of course. We were pushing.
Mr White: I would also like to express my condolences to you. Certainly in terms of timing, as you mentioned, at least have a break with your wife.
The question I had was something following the lines of Mr Beer's. At the time of your organization, did you receive any assistance from the Metro association and from the OACL?
Mr Meldazy: Yes. the Metro association. We received some assistance in the form of advice and so on. We spoke to several people in the Metro association. People did come out and address us. I cannot recall some of the names, though. It has sort of slipped me right now. But there were people from the Metro association who did give us advice.
Mr White: And from your experience, you found that advice to be somewhat helpful, I am sure.
Mr Meldazy: Oh, very definitely. Yes, positively.
Mr White: Do you have any suggestions as to how a group such as yours could be enabled at the grass-roots, beginning stages?
Mr Sparks: The starting up of an organization, making it a registered charitable foundation, making it a corporation, is incredibly complicated. People from the general population just do not have the expertise. The original founding group that worked together to produce CLAS had the advantage of advice from the Metro association and actually met in its Scarborough offices free of charge, because many of the individuals were members of the other organization but knew that there was not a hope of getting into a group home.
They also had free support from a lawyer for advice and were able to tap, through OACL and through MTACL, people who could shepherd them through the process. What we were hoping to do is to create people at CLAS who could then take others through the same process so that you would get a pyramid effect so that people became experts at how to work through bureaucracy. There was a lot of very careful shepherding of this group so that they did have a home within a year and a half. It is a year and a half later and the second one is still in process. It does take time.
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The best we can offer is that there is a network available. The hardest part, as Bill said, is to get the first group of parents who are willing to sit down and talk about their problems and who their offspring are and what they want to do about it, because they have their own lives, their own responsibilities, and it takes an incredible amount of time. Bill has put in countless thousands of hours in the beginning of this process.
The Vice-Chair: Thank you very much for appearing before the committee. I think you brought a very sensitive story to us today and we appreciate your sharing that with us.
ADVOCACY RESOURCE CENTRE FOR THE HANDICAPPED
The Vice-Chair: We turn our attention to our next set of presenters. We have to move quickly along. The Advocacy Resource Centre for the Handicapped, Harry Beatty. Welcome to the committee. I would like to remind you, as I have done with each of the presenters, that we have approximately half an hour for your presentation. I will stick to that half-hour limit and allow you to divide that time up in whatever fashion you deem fit so you can allow for questions at the end of your presentation.
Mr Beatty: In the interest of time, I will not read our submission but simply summarize it.
I am not going to say very much about our own centre, except that it is a specialized community legal clinic which has operated since 1980. It is supported by 40 disability organizations. Because of our structure, a majority of our directors and a good number of our staff are themselves persons with disabilities. I have put a brochure in your materials describing ARCH more fully. If you have any additional questions, you could ask Mr Malkowski, who was a member of our board until September.
Personally, I have been a lawyer at ARCH since 1986, but prior to that time --
Mr Malkowski: On a point of clarification, if I might, I am not a member of the board of ARCH.
Mr Beatty: No, not now, but prior to September, prior to the election.
Mr Malkowski: No, I have never been a member.
The Vice-Chair: Perhaps we can clarify that later on if you like.
Mr Beatty: Prior to joining ARCH I was with OACL for seven years, so I have spent 12 years now advising on legal problems and critical issues relating to people with disabilities.
On the first page of our submission we have outlined some of the circumstances in which people who are developmentally handicapped find themselves in Ontario in 1991. I know that during your hearings you will hear about these circumstances from people who have lived them and are, therefore, much more qualified to speak about them than I am, but even having to advise on these problems is something, I think, that would have to affect you deeply. Simply to be faced with these circumstances and to have to tell someone there is not very much I can do about it is a difficult thing.
There are still people who have spent and will spend their entire lives on institutional wards without any family contact, basically without any friends, or at least friends external to the institution, and without any personal privacy. I am told as a rule of thumb by people who work at institutions, and I have visited a good number, that perhaps a third of residents will never receive any contact from family and another third will have only the most nominal contact, an occasional letter or perhaps a once-a-year visit. Only a very small number have any regular contact.
There are still children in Ontario who are living in group homes -- and I am thinking of, in particular, some individual families who have contacted me -- rather than at home with the family because funding is available in the group home but it is available only to a much more limited extent, if at all, when the child is at home with the parents.
We are still institutionalizing children in Ontario. The Provincial Auditor's report recently identified 130 children in schedule 1 and 120 children in schedule 2 facilities. Children labelled developmentally handicapped still are often not permitted to attend the neighbourhood school with their siblings. People labelled developmentally handicapped, children and adults, female and male, are subjected to physical and sexual abuse much more frequently than others in our society. There is substantial research being conducted by Professor Dick Sobsey at the University of Alberta which is referred to very briefly in ARCH's abuse publication, Responding to the Abuse of Persons with Disabilities, a bilingual publication which is being distributed nationally.
There are still too many examples of inadequate care and life-threatening neglect. As the previous presenters explained so eloquently, people even in their 80s and 90s who have been looking after their sons and daughters their whole lives are faced with the terrible dilemma of allowing their son or daughter to go to a boarding home or an institution, if that is even available, because group homes are not available, or else continuing to shoulder the burden themselves. I would venture to say that is a women's issue, in that if you really examine what has happened in these families, in many cases the great burden of the care has fallen on the mother, although that is not always the case. A final example is that many people in Ontario labelled developmentally handicapped are still in sheltered workshops making 25 cents or 50 cents an hour, with little hope that that will ever change.
These things have all been documented many times, and I am sure others will tell you about them. The question is, what is to be done? Reviewing the announcement to the Legislature of the minister, Mrs Akande, I think there are a number of things there that ARCH can enthusiastically support.
It is good to see that People First of Ontario, which is presenting next, has been identified as a key group to be consulted, because too often in the past debate on these issues has proceeded without the people most directly affected, the people who actually live in institutions. It is often more or less assumed that they have no voice, that there is nothing worth while that they can say. At last I think this is starting to change as ARCH strongly supports consumer movement and established funding for organizations like People First.
We see in the minister's announcement some support for the special services at home program and individualized funding. We see the announcement of a forum in which there will be participation of all involved parties. We stress again that has got to include the people who have lived with the label of being developmentally handicapped.
Clearly, the area of deinstitutionalization has been a highly political one and approached -- you were around for some of the history around the five-year plan -- in a very adversarial manner in the past by, I would venture to say, pretty well all of the interested parties. We need some kind of forum in which a more constructive discussion can take place.
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Finally, ARCH is an active member of the advocacy coalition and a long-time strong supporter of independent advocacy, going back to our role in Judge Abella's report on legal services and advocacy for people with disabilities in Ontario. ARCH, of course, is involved with organizations and individuals with all disabilities, or as far as we can, and certainly we welcome all disability groups and serve clients with all disabilities.
Developmental disability has been a significant part of our mandate. We responded to over 200 summary advice calls last year involving developmental disability. Many major provincial organizations dealing with developmental disability are of course part of ARCH. Included in the materials is a report of a conference, although not a traditional conference, held in 1988 called Let's Talk and Listen. It was a conference to which there were many present and former institutional residents invited. Through skits, pictures, different kinds of personal interaction, some institutional issues were identified.
We view ourselves as a resource to the disabled community rather than spokespersons for it, and if we can encourage you to all support a wider voice for People First and other groups directly representative of individuals labelled as disabled, I think that is the main message we could bring today.
There are some ideas that we have put forward for improving the multi-year plan, classed under three headings. First is a better recognition of the rights of citizens with developmental handicaps in Ontario. Residential services and other services to adults are offered under the Developmental Services Act and the Homes for Retarded Persons Act, which have really not been amended since the 1970s. They were very progressive pieces of legislation when introduced, but now they need to be updated. They do not say very much about people's rights or about even basic quality of service except for some minimum standards in the regulation. Some of the important rights provisions in the Child and Family Services Act were passed by this Legislature but never proclaimed in force.
But it is not just a matter of legislation. Again, we come back to the importance of talking to institutional residents. For example, in visiting people who have been in the institution and placed in the community, there is a real concern on their part that existing relationships which they had would not be respected. It is important to remember that even though we may not agree with the institution as a setting for individuals, if they have lived there their whole lives or a good part of their lives, that is where their friends are. Residents would express concern that they would be placed in the community without a boyfriend or girlfriend or that they would never again see a staff member whom they were close to, that they would perhaps be placed in some place where they would be lonely. I suggest that through strengthening of peer support, through People First and perhaps otherwise, maybe some of that could be alleviated.
We need better information for systemic planning and advocacy, in our opinion. In preparing for this presentation, I went back and reviewed some of the reports that had been done, particularly around the five-year plan implemented by the Ministry of Community and Social Services beginning in about 1982. It involved five institutional closures, five institutions which were closed altogether, and two or three others which were significantly downsized. In looking at the reports, it was really quite disappointing to see that no matter who had authored them, there was not too much information. They were the sorts of reports where the author had started with the conclusion and just included the information which seemed to support it. That is perhaps a little bit strong, but I do not think too strong.
There was a great deal of political pressure placed on various organizations during that period either to support or to oppose the plan. Consequently, I have put in a quote from an OACL report on the closure of Pine Ridge which indicates the ministry had done an excellent job, to an Ontario Public Service Employees Union report saying it is a disaster. I am not saying that the reports were badly done or that any of the information was not accurate, but I think all of these reports would have to be looked at very carefully to see if the whole picture was given.
In my experience, and admittedly I have only been in contact with a very small number of the individuals who are deinstitutionalized or their families, there is the whole range of outcomes. For some people, being placed in the community was a whole new life where you could hardly recognize the person the way they were before, and the families would support that, but other people were reinstitutionalized.
I think the ministry deserves some criticism for the fact that people were not followed up. So today, if we try to look at whether it was well done or badly done as a whole, I stand to be corrected if someone has this information, but I would doubt that anyone knows where the people who were in St Lawrence Regional Centre or Bluewater Centre for the Developmentally Handicapped are. I think it is only by looking at consequences 5 or 10 years down the road that you could really say whether it did work or it did not, hoping that the systemic function of the new advocacy commission will fill some of these needs in future.
Finally, I discuss funding -- always a major problem -- very briefly in the last section of the report. I will just mention a list of issues.
One is that in deinstitutionalization a major problem is transitional funding. When people are moved from an institution or in fact from any service, you cannot really reduce the funding proportionally. The idea is often expressed that the institutional dollar should follow the person to the community. If we are spending $75,000 or $80,000 on the individual in the institution, boy, we could provide a pretty good community service for that. The trouble is that if you downsize the institution, there are many fixed administrative costs, building costs and so on that do not drop that fast.
The Canadian Association for Community Living has developed a national proposal to deal with this issue which has been presented to the government of Canada, entitled the Community Living Resource Fund. If they are not presenting to this committee, I think at least that report should be looked at in terms of a national initiative to deal with this problem.
I also believe, having visited institutions and spoken to the staff, that there are many staff there who have accomplished a great deal with and for the residents despite the very difficult circumstances and that the skills they have should be brought into the community. Of course, in many cases they are the only people the residents know and can provide some continuity.
I also would like to strongly support the special services at home program. I am quite familiar with it because I played a small role in advising on it when it was first established. It has accomplished a lot for parents whose children are at home, but I believe it is fair to say it has been badly underfunded, with the result I mentioned earlier, that people are saying: "Look, the government will pay $30,000 or $40,000 for my child to be in a group home. Can't there be $10,000 or $15,000 if we have our youngster at home?" Often the answer still seems to be no, the money goes to the established place. Part of that is due to the Canada assistance plan and is something that should be discussed with the federal government, because the cost-sharing dollars are triggered by the child's being placed in the care of the minister.
Individualized funding and brokerage, I believe, are new ideas but ones that should be looked at seriously, because they begin to address the ideal of the individualized program that meets the individual's needs. Unfortunately, these kinds of approaches are often associated with privatization and cost cutting, but I do not think that is a necessary connection. I think an alternative is to look at ways of employing people to provide services on a flexible basis so that they will have adequate salaries and adequate benefits.
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Finally, the broad initiatives of employment equity as it affects people with disabilities and social assistance reform have major implications for people labelled developmentally handicapped. There are now over 100,000 disabled people receiving the guaranteed annual income system for the disabled in Ontario. That is the disability part of the family benefits program, and their dependents are on the program as well; 22.3% have "developmental handicap" as a primary label.
Many of those people would like to work and I think it is important from a social perspective as well as in terms of the personal dignity of those individuals that we do everything we can to make sure that happens. We need to move towards a society where job coaching and modifications like, say, colour coding of what buttons have to be pushed are just as much a part of job modifications of the concept of employment equity as are ramps and adapted computers. I think we are moving towards that, but it is very important that some progress be made, because it should not be the case that developmental handicap automatically means a life on social assistance.
The final issue is one I personally have been involved with for several years. It is the problem faced by families who want to make a provision for their son or daughter in their estate. It is far from a simple issue, but I would argue that basically government has done very little, if anything, to facilitate this. I believe that a better policy is available which would look at some sharing of support between, say, a trust established by the family and social assistance.
There are some things that have been done in other countries in terms of specialized foundations or non-profit administrators of trust which may be looked at as models. I have not had an opportunity to visit those places and review it in any detail, but I think to say to parents basically, "If you leave more than $3,000 in a trust, we are going to review it and see if we can cut your son or daughter off family benefits, and that means the loss of drug and dental benefits too" to put that kind of disincentive in the way of people who basically want to provide support is quite a shortsighted policy, especially when there is such a shortfall of funding to provide even a minimal level of service.
That is only a very brief overview and I am happy to try to answer any questions that you have about it.
The Vice-Chair: We have, unfortunately, only seven minutes left for questions. Please keep that in mind.
Mr Malkowski: I just wanted to clarify to provide correct information. I have never been on the board of directors of ARCH. I have been a member, but not on the board of directors. However, you brought an important issue to our attention that we should consider. Can you make specific recommendations for this committee to think of in terms of the multi-year plans?
Mr Beatty: I have tried to outline some of those in the brief. I think I should emphasize one or two things. First of all, I think the forum, the way in which it was conducted and the participation of people who themselves have a developmental handicap, is absolutely critical. It is important to recognize those who carry around the label as active participants in the process.
That is not to say that the disabilities which many have are not significant and that their capacities to communicate are not limited, because they are, but I think it makes it all the more important to include them. Too often the debate proceeds with the people most directly affected not there and not taking part. I remember some years ago when I was with OACL, the ministry sponsored a conference at OACL that was called Why Can't I? and invited exactly one person, Peter Park of People First, to participate. Peter had some fun with the notion of "Why can't I?" I mean, basically, if I am not invited, I can't. I think you will hear more in the next presentation about that kind of difficulty in getting heard that consumers have had.
Mr Malkowski: Your report shows more than 100,000 people on permanent FBA are developmentally handicapped. Is it because of the label that they are on that permanent FBA?
Mr Beatty: About 23%, about another 25% have a psychiatric disability as the primary disability. Very often, once a person has the label of developmentally handicapped, yes, he does receive family benefits. I have been told by the Learning Disabilities Association that sometimes the people who have a learning disability are also labelled as developmentally handicapped. That is an indication they will get family benefits too. So the general model has been that if you are labelled developmentally handicapped, you get family benefits, but you do not get much priority or much consideration in terms of competitive employment.
Mrs McLeod: Of all the areas of interest and concern that your brief raises, I will try to focus on only two, with two very brief questions. The first relates to transitional funding, which the previous presentation also mentioned, the importance of the transitional period. Do you have a sense that that is an area of concern that has been recognized? Is there a transitional fund that you are aware of? Has there been any chance to look at the program of the Canadian Association for Community Living?
Mr Beatty: I know it was presented to the Minister of National Health and Welfare, but I was not part of it and I am not aware of the detail. I think, however, it would be worth while for Ontario to look at their proposal as the starting point. I do have a copy with me. I could leave it with someone or get a copy made.
Mrs McLeod: My second question is in a whole other area. You make a note that a child labelled developmentally handicapped will not be allowed to attend school in some situations. Is it your sense that Bill 81 has been fairly effective in dealing with the appropriate placement of children with developmental handicaps or are there some real problems still there?
Mr Beatty: It is hard to generalize, because the response has been very different among boards. In some school boards, there has been a very positive response and an integrated placement will be available. In others, there has been a very considerable resistance. I think the legislation still leaves a lot of authority in the hands of the boards and it has been a very different picture from place to place.
Mrs McLeod: I will just ask, as a point of information, if the ministry could tell us whether there is any program in place for a five-year tracking as a monitoring evaluative device. It would be too early for us to have seen a report of that nature, but perhaps there is a process for that kind of evaluation in place.
The Vice-Chair: We have the ministry person present making note of that.
Mr Owens: My question is on the subject of abuse. Do you see the abuse detection and reporting protocols that are in place now as being effective and if not, why not, and what kind of recommendations could you make with respect to these protocols?
Mr Beatty: It is not a question that can really be answered briefly. There are certainly some ideas in our publication. It is very difficult, because many people labelled developmentally handicapped are vulnerable. They are not in a position where they have anyone to communicate a concern like that to. Even if they communicate the concern, they may not have anywhere to go to get away from the abuser.
I think over time one of the things the advocacy commission will have to look at is abuse. But there are so many things that have to be looked at, not just reporting but how these matters are handled by the criminal justice system and particularly what the alternatives are, so that if people come forward they are not at risk of being left in the environment where the abuser is.
The Vice-Chair: I am afraid we have run out of time. I would like to thank you for appearing before us.
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PEOPLE FIRST OF ONTARIO
The Vice-Chair: I would like to move right along to our 3 pm scheduled hearing for People First of Ontario, Norval Sears, who is the president, and Michael Callaghan, board member. Would you like to come forward, please. Might I ask that you identify yourselves, as I see that there are more than two people present. Welcome to the committee and, as I remind each of the presenters, you have half an hour and you may wish to allow yourself some time for questions at the end of your presentation. Please proceed.
Mr Sears: My name is Norval Sears, and I am the president of People First of Ontario.
Mr Callaghan: My name is Michael Callaghan and I am a member at large for People First of Ontario.
Ms McGill: My name is Judith McGill, and I am the adviser to People First of Ontario.
Mr Sears: I just wanted to say a little bit about the adviser's role. Judith has advised the board to help the board understand some issues and stuff that we do not understand, or if we sit on a committee or anything, she would help us to understand what the issues are. Some of us cannot keep up with issues too well.
People First has a board. They often label handicapped who have been in institutions, group homes, workshops or segregated schools. We do have a board to put in pride and we do our own business. They do not have anybody outside telling us what to do. We do it ourselves. Just to clarify, because we usually end up with somebody asking us if we run our own stuff or somebody else runs it for us, we run our own organization.
We have some big issues here that we thought are really of concern to us right now. What we want to see right now at this point is close down every institution in Ontario. It is not really right for these people to be in these institutions, because there are a lot of deaths in these institutions right now that were not known about. It has been around a lot of years.
We want to speed it up a little bit and we want to see these people who are dying in institutions out in the community, because they have a right. If they are stuck in an institution, they are dying in institutions right now. There were recorded deaths in Brantford, and Christopher Robin had so many deaths. I am not sure of the total, but I think it was 17 in Brantford at the last count, and Christopher Robin had 15 or 16 deaths. These are children who have never grown up to see what the world is really like. They died in these institutions. We want to have these institutions closed before anything else happens to these people.
I just visited with one institution, which Michael is going to be speaking on, where he used to live. What place is that?
Mr Callaghan: Huronia Regional Centre.
Mr Sears: Yes, we visited there. The human rights commission set that up and wanted us to go with them and take them through this institution. What we saw there is not a pretty sight for anybody to see. A lot of the corridors are all locked up. They do not let their members walk around or nothing. They put restraints on their beds, they hold them down with restraints on their beds. It is terrible, and there is a terrible smell in this institution that they have to live in. They all are grouped into one room; they are not separate.
There is an unmarked grave in this institution, in which people have died. It does not have their names, who they are or which families they belong to or anything. They are unmarked because they do not have a name and it has been covered up too long. We need to know what is going on in these institutions.
That is why we want this institution to close down and give these guys a chance to live out in the community. A lot of them can live out in the community and they get support out in the community. We are not saying they will not need a lot of support; they will need a lot of support. We are not saying we are not going to give them support; we are going to give them support.
Just going on to talk about freedom for a minute here, freedom is when we can do our own things and we can do everything else. But right now, people in institutions cannot go to the bathroom or to anywhere in that whole institution without a staff member present. That is taking away freedom of a person who has to go to the bathroom and has to take a staff person to the bathroom. It is not really right.
In this institution they do have padded cells, like a cell. There are no doors on it, but it is padded one person who tries to hurt himself. They say these people are hurting themselves, but we have not even seen that happen. They said one guy would tear his flesh off, the skin, and he gets into violent rages. He never got into violent rages when we were there. He was calm enough to talk and he tried to talk to us, but he could not talk too long because he had a staff person there and he was scared to talk.
To talk a little bit more about this will be Michael. He will tell you what it has been like in an institution.
Mr Callaghan: Being in an institution is terrible. I was in one of them. I was in Huronia Regional Centre and it was like prison. I mean prison. It is just like a cell with bars all over the window. It is also not popular. It is not very good down there, no.
Interjection: How many years have you been in there?
Mr Callaghan: I have been in an institution for 17 years, and that is darned well long enough. They put me in, they would not let me go anywhere I wanted. If I was to go somewhere, they would have to keep an eye on us just in case we did something, and that is wrong. They drugged me too.
Ms McGill: Michael, who are "they"?
Mr Callaghan: The staff. Being in an institution is just like being blocked from freedom and that is not right. We all have to have our freedom sometimes. Freedom to do anything we need, to go to a show, to see the movies, to see a hockey game, to see a baseball game and go dancing, go to church and be with our girlfriends and with our parents, especially with girlfriends. We were separated from each other, separated instead of being together, which is usual.
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Ms McGill: Who was separated from you?
Mr Callaghan: My girlfriend, Suzanne.
I am living in Mississauga now in an apartment with my room-mate. He is doing okay. I used to live in a group home before that. It is not fair not having a girlfriend living with me. They should not do that. They should have me and my girlfriend living together, so I can take her to church every Sunday and go dancing and go to work and all that stuff. Being locked up is just like being isolated from freedom.
Ms McGill: Michael, where do you work now?
Mr Callaghan: I work in a nightclub, Superstars.
Ms McGill: Do you want to say anything else?
Mr Callaghan: That is all I have to say for now.
Mr Sears: You are probably thinking to yourself you can make up better rules than these institutions, but who is going to follow the rules? You can basically put rules in institutions, but no one is going to follow them. The staff are going to do what they want to do with these people. You do not know what is going on in these institutions. There are terrible things. You can basically, like I said, put the rules in effect, but no one will follow them, so you are just wasting time there. So we still want the institutions closed and bringing out all these people who could live in the community and have some support.
I just want to go on to the issues that we want dealt with. Michael is going to read them and I am going to answer them.
Mr Callaghan: People First of Ontario would like institutions to be closed as quickly as possible. The multi-year plan is painfully slow.
Mr Sears: As I was saying before, there is Brantwood and Christopher Robin. Brantwood has an inquest into the deaths. Christopher Robin does not; it just got a coroner's inquest. But we want an inquest in that death too, because a coroner's inquest could cover up a lot of what is happening to these people in this institution.
They have no right to say no because they are dead. They cannot speak on their own behalf or anything like that, so we are speaking on their behalf. We want that because the minister said there were four reported and the rest of them were not. It sounds like it was covered up, so we are asking just to think to put an inquest in both Brantwood and Christopher Robin and keep us informed as to what is happening in the institution because we have no authority to go in there to find out what is going on.
Ms McGill: Can I clarify something?
Mr Sears: Yes.
Ms McGill: Your comments there were for this second one.
Mr Sears: Yes.
Ms McGill: Maybe you could just read the second one, so that people know what recommendation that was for, Michael, and then go on to number 3. So what you have just said really has a lot to do with this number 2.
Mr Callaghan: People First of Ontario would like a provincial inquest into all deaths in provincial residential institutions in Ontario, including provincially sponsored community residences.
Mr Sears: I kind of answered that question accidentally, so we will just go on.
Mr Callaghan: People First of Ontario would like a full inquest to be conducted into all of the deaths at the Brantwood and Christopher Robin institutions, that these inquests be carried out by community advocates and not by medical professionals only.
Mr Sears: The reason we want that part is, right now I guess the minister has three nurses looking into or inquiring into these deaths. They are part of the government, in a way. They will probably just say they died of natural causes and they will not come out with the very truth, but if we have one of People First's members in there to talk to these people, who can be able to communicate with them, now we just need an advocate to go in there and tell us what is really going on and not to cover this whole mess up, like it tends to be covered up all the time.
Mr Callaghan: People First of Ontario would like better external monitoring of conditions in residential facilities, including more effective reporting of deaths and causes, having a way for residents and families to report abuses without worrying about further abuse, and full authorized access to institutions by People First members.
Mr Sears: The reason we said that was, we need at least one of our members or people who have to do with People First or the local group to go in and talk to these people, because right now, if they have staff around them -- I have seen this happen many times -- staff will be in the room and then the people will not say what they wanted to say. Let's go back to the one I just visited, the institution. One person opened up to me because there was no staff around and he was just telling me he had been in an institution. He is 75 years old now and he saw his own brother and sister die the first day they went into that institution, and he opened up. There was no staff around at that point, so that is what we are trying to say: if they can communicate with us, we can communicate with them without staff telling them what to say. Staff could make them say anything they want to say and then we will not get near the truth of what is really going on in those institutions.
Mr Callaghan: People First of Ontario would like commitment to the idea of ensuring that the advocacy commission remains independent with strong powers for monitoring abuses in community and institutional settings.
Mr Sears: That one speaks for itself. Right now, there is not much that I could say about that one.
Mr Callaghan: People First of Ontario would like a policy of no further admissions to provincial institutions and that people at risk of institutionalization or readmittance be given top priority for community services.
Mr Sears: We want the institutions closed, but from the minister's point of view when we talked to her, it sounds like she wants to admit more people to the institutions. Instead of closing them down, she wants to keep them open. But we want them closed. I am just going back to the deaths. There are too many deaths which are occurring. People have got to live their own lives. They have their rights, but they are taking away theirs right from them.
Mr Callaghan: People First of Ontario would like closure of all homes for special care and boarding homes and rest homes that are allowed to make a profit out of exploiting helpless people and treating them poorly.
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Mr Sears: I want to make a comment for that part, that people in these residents and group homes and that, the staff gets more money than the people they are serving. So you get the money, but the staff is getting the money just to support them and work with them and that, but it should be the other way around. It should be the people in these institutions and these nursing homes who should get the money, not the staff.
Mr Callaghan: People First of Ontario would like the Lightman inquiry into unregulated residential facilities in Ontario to include self-advocates who have had to live in these facilities, as well as to consult extensively with People First of Ontario.
Mr Sears: What we are asking right there is to be consulted. We have not been consulted with any inquests or anything. We have been hearing this by an airwave situation and we get it piece by piece, but we want to be consulted as to what is going on so that we can help our own members to understand. We need that consulting so that we can do something for them.
Mr Callaghan: People First of Ontario would like to participate in the forum that has been called by the Ministry of Community and Social Services and have a say in the way this is structured so that we can participate in a meaningful way.
Mr Sears: This one here, it was just mainly saying that the mentally handicapped want to have a say in what is going on. We are not having our say in what is going on in these inquiries. You have to go through a lawyer right now. We would have to if we wanted to ask a witness or something like that, but we want to do it ourselves. So we want to have our say in these inquests into these deaths. These are our people who are dying in these institutions, so we should be able to have our say in these.
Mr Callaghan: People First of Ontario would like to be consulted about which community service options are the most supportive of the needs of people labelled mentally handicapped so that people will live in homes, not services.
Mr Sears: That speaks for itself. That is the end of our thing, if you have any questions.
The Vice-Chair: Okay, we have seven minutes left for questions. I would like to divide that time up evenly among the three parties. Mr Malkowski is on the list first.
Mr Malkowski: I think we should be allowed to add extra time. I think you should maybe give them 10 minutes, give them extra time, because the presentation was slow and we want to be fair to them.
The Vice-Chair: Okay. We can certainly do that. I can probably go on a little longer, but I still have the three questions, one from each party.
Mr Malkowski: Okay. Thank you, Mr Chairman. I was very impressed with your presentation. I was very struck by the information and how it will be helpful to us, providing your firsthand experience. Do you feel it is very important for people who are in the institutions to have the right to get information related to their rights about reporting sexual and physical abuse, that the people in the institutions should be informed of their rights, and then that allows them the choice that they could move out of the institutions?
Mr Sears: Yes.
Mr Malkowski: Do you feel that is important as recommendation?
Mr Sears: Yes.
Mr Malkowski: I know that consumer groups and parents both have very strong and often different opinions. Some parents want to put their children in institutions and keep them there. Often that conflicts with the consumer's option. Do you feel we need to consider the recommendation to protect the rights of children who are under the age of 18?
Mr Callaghan: Yes.
Ms McGill: Can I ask Michael a question for clarification? Mr Malkowski asked you whether or not people who are not yet 18 should stay in institutions. Is that fair?
Mr Callaghan: No, it is not fair.
Mr Malkowski: Do you think we need to set up protection for those people who are under the age of 18 who want to move out of institutions but their parents do not want them to? Should we provide some kind of protection for them?
Mr Callaghan: Why not? That is a great idea.
Mr Jackson: I want to thank you for an excellent presentation. I have listened to Pat Worth's presentations on several occasions. You are doing as good if not a better job as Pat ever did, so I wanted you to know I am very impressed. I want you to know that Marilyn Heintz is a close friend of mine and I work closely with her, as she is a full board member in our association of community living in Burlington. I know you have met Marilyn Heintz before. I am very proud of her work.
I want to thank you for focusing on an issue that no one wants to talk about at these hearings, and that was the situation at Brantwood and Christopher Robin. I want you to also know that you are the first people to really raise this issue for us. I want to share with you that I certainly agree with you that a full inquiry is required and want you to know that when I asked the government if it would have a full inquiry, would it do so because of the reasons you have raised, it indicated it did not feel it was necessary at this time. However, four years ago when this was happening in a nursing home for senior citizens and they were dying, they were asking for a full public inquiry.
Do you feel that is discrimination, that there is one level of concern for a full public inquiry when senior citizens were dying but when developmentally disabled children in institutions were dying we do not have the same standard? Do you consider that discrimination against you?
Mr Callaghan: Yes.
Mr Jackson: Norval, do you want to expand on that, because no one is talking about this aspect of your brief. It may not be discussed again unless we talk to you about it.
Mr Sears: Do you want to repeat the question?
Mr Jackson: It has to do with the fact that you know that the government is unwilling or will not allow a full inquiry so that your association can go in and advocate, to consult, to listen to the residents who are living there to discuss the terms and conditions. In fact, Marilyn Heintz said to me her concern was that the person appointed by the government is a nurse and a member of a union, and the persons they are partially investigating are members of a similar union. Those are the kinds of concerns Marilyn shared with me. You have hit that point here, both of you, and I just wondered if you agree that perhaps the nature of the current inquest was inappropriate and that you want standing before some larger inquest so that you can be present, ask questions, listen and make sure the residents' concerns are being discussed.
Mr Callaghan: Yes.
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Mr Sears: Just to expand on that a little bit, why People First want to be at this inquest is so that we can be heard. We are advocates. We advocate on behalf of other people who cannot talk for themselves. That is why we want to be involved with this inquest, so that these people will understand that we went there and got their issues across about what happened to them in institutions. So that is our way, it is advocacy to help every one of us in nursing homes and everybody who is dying in the communities. I am not just segregating the institutions. It is all over that needs to be overhauled.
Mrs McLeod: I also wanted to thank you for doing an excellent job of telling us your story today. I wanted to ask Michael another question or two. You told us what it was like to be in an institution and what that felt like, but I would like to know a little bit more about what it was like to go into the group home. Was that a good place to be? Was it easy to move in?
Mr Callaghan: It was.
Mrs McLeod: So you had no problems when you went into the group home.
Mr Callaghan: No problems at all.
Mrs McLeod: Is it okay in the apartment now? Is it okay getting to work and managing on your own?
Mr Callaghan: Yes, it is.
Mrs McLeod: Congratulations, Michael. That is great to hear.
Ms McGill: Could you maybe explain to Mrs McLeod who made the decisions about your leaving the institution, how much say you had, or what would you have liked to have done when you left the institution?
Mr Callaghan: Staff made the decision that I move out of the institution.
Ms McGill: Who decided that you would move to Port Credit?
Mr Callaghan: The staff.
Ms McGill: Where would you have rather moved to?
Mr Callaghan: Hamilton.
Ms McGill: Can you tell them why?
Mr Callaghan: Because my girlfriend is there now.
Ms McGill: Did she leave the institution at the same time you did?
Mr Callaghan: No.
Mrs McLeod: Did anybody ask where you wanted to go?
Mr Callaghan: No.
Ms McGill: You said earlier that you would like your girlfriend to live with you now.
Mr Callaghan: Yes.
Ms McGill: Why is that a problem?
Mr Callaghan: Because they do not believe that we have a good relationship together.
Ms McGill: Who are "they"?
Mr Callaghan: Staff in Hamilton.
The Vice-Chair: I would like to thank you for your presentation. Unfortunately, we have run out of time and we have a very, very tight schedule. Only so much time was allocated so I have to move on. Before we do that, I think it is appropriate to have a few minutes' recess. It was requested. We have been going two hours straight here and I think everyone needs a brief recess.
The committee recessed at 1534.
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PARENTS FOR COMMUNITY LIVING
The Vice-Chair: I would call upon the Parents for Community Living, Joye Krauel, Allison O'Farrell and Keith Heimpel. Welcome to the committee. As I remind each of the presenters, you have half an hour. You may divide that in whatever way you deem appropriate.
Mrs Krauel: Perhaps I could just introduce us. I am Joye Krauel, this is Allison O'Farrell and this is Keith Heimpel.
Mrs O'Farrell: We are from Parents for Community Living, Kitchener-Waterloo. First we will tell you who we are and our history. Parents for Community Living is comprised of a number of families who have one or more family members or friends who, because of a developmental handicap, require support to live fulfilling lives in the community. Our goal is to provide homes. At present, 20 such families form the core of our organization, which has over 100 members who support us in our vision of a community where everyone belongs.
Our vision: We envision "home" to be family-sized, comfortable, nurturing, responsive to the strengths and needs of those who live there and supported by a Christian environment. Support persons will live in the home and work together to respond to the needs within the home. Each home will be developed in partnership with a faith community, and our hope is that every faith community will in time become involved in the lives of persons who have a developmental handicap.
We believe adults with disabilities need to have a life of their own, involved with their families but not necessarily living with them. We seek a quality and direction to their lives that is based on belonging, acceptance and welcome in the community.
We want to build a community of support which will secure the future for our family members and friends, a community which allows them to have fulfilling and interdependent relationships with their families and friends. They need support in a home and they will also have a great need for continuity in relationships. Their families need the assurance that a caring community will provide this continuity.
Sons and daughters who are adults should be recognized as such. Therefore, they need to live in homes with people with whom they relate, whom they respect and with whom they are compatible. They need to live in households where they have some control over the decisions made, some voice, equitable responsibility consistent with their ability and where they have the status of ownership. There are many ways to achieve ownership, but fundamentally, it is to mean that the home is their home.
We will develop a support network to ensure continuity of responsibility over time. It is important that persons from the community freely choose to become involved to the point that they develop a commitment. This support network of friends will encourage active participation in faith community and community life.
An incorporated board of directors will have ultimate responsibility for the homes. However, each home will have a house council comprised of the support couple, the individuals in the home and an advocate for each individual representative from the faith community, support networks, Parents for Community Living and the board. This council will be concerned with the quality of daily life within the home, will help to ensure that the home remains true to the philosophy and will also act as a liaison with the support network and the faith community.
Mr Heimpel: I would like to give you a little background on Parents for Community Living, how we came into being, because I think it is important to get that context, from where we are coming. About six years ago, several parents came together because we had mutual concerns for the wellbeing of our adult sons and daughters. Within a year, a core group of parents were meeting on a regular basis with the help of a facilitator, Father Pat Machan, who is a resurrectionist priest centred in Waterloo and who did a lot of work internationally but largely across Canada.
Under Father Pat's guidance we began to develop our community work. We told our stories to several church communities and asked them to consider working with us. Our stories would be the story of what it was like to have a handicapped family member and to keep that family member in our homes with us. St Francis parish in Kitchener invited us to submit a proposal and so began our plans for our first home.
In October of 1988, we incorporated a board of directors, purchased a home at 48 Blueridge, right across the street from St Francis parish, and secured a mortgage on the home through the signatures of a number of our parents and friends. With a donation from St Francis parish, we began renovations to the home to make it wheelchair-accessible. In February 1989 Douglas and Tom moved into their new home, and with the completion of added renovations in June the same year, Joseph joined them.
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Everyone in PCL participates however she or he is able to. We do not have government funding, so it is a real struggle to continue to raise funds to pay the mortgage interest and to assist the men in paying the operating costs of the home. We know that our service is very cost-effective. We know it is unique in its person-centred vision and in its depth of community involvement. However, the fact is we will not be able to proceed further on tenacity and faith alone; we need assurance of operating funding, and fairly soon.
We are currently in second-stage funding approval for a Ministry of Housing grant for this home and also for the purchase of a second home. Final approval is anticipated for April 1991, all things going well, and we will hope, of course, that operating funds will follow with the support of the Ministry of Community and Social Services. Assuming all goes well again, four persons will move into home number two in the fall of 1991 in partnership with Trinity United Church in Kitchener.
I would like to talk a bit about our observations about the multi-year plan. We formed Parents for Community Living to ensure that your family members and friends would not be placed at risk of institutionalization. We are in complete agreement with Challenges and Opportunities, where it is stated that "The institutional system is not considered a viable model for the future." We believe strongly that everyone belongs in the community -- I would like to emphasize that -- and that those persons who have been excluded from community living must be returned to the community.
But in order for that to happen, a lot of other things have to be put in place. It certainly does not make sense to us to place persons already in the community at risk due to lack of proper housing, employment opportunities and support services and at the same time bring individuals out of institutions. To make the closure of institutions a reality, persons living in the community already must also be served there. Many of our families in the community are already meeting needs of very challenging individuals. All of the challenging individuals in the province of Ontario do not live in institutions. So we need supports on both sides of the equation.
Special services at home is an example of a program which offers an individualized approach to support for families. However, families often find this program inflexible and deficient with regard to the number of hours and, in some cases, the types of services it will provide. For instance, with regard to serving adults, the type of support extended is very limited and consequently may not respond to the needs of individuals. If this service is truly meant to support families in keeping their family members at home, families have to be listened to. The needs of their sons and daughters have to be addressed. Families do not have the time or energy to constantly be renewing contracts and/or really not having the assurance of ongoing funding under that program.
Existing waiting lists indicate clearly the need for housing options, particularly for adults. Many of the parents in our group have sons and daughters who have lived with them for 30 years or more, and they have no peace of mind with regard to the future of their family member. Indeed, it is this very reason why Parents for Community Living came into being.
Again, employment opportunities in our community are also very limited. New initiatives in employment are badly needed. In fact, for the first time in over 30 years, K-W Habilitation Services, which is the major service provider in our area, has established a waiting list for all of its training and developmental programs for adults. Our daughter, Jennifer, like many other young handicapped people, graduated from high school to nothing. There is nothing there for her. Unless, as in our case, families have the resources to put their own dollars behind the purchase of a supportive worker, there is nothing for them at all. Even post-secondary school education is not an option in our community if in-school supports are required.
Funding for job coaches is badly needed. Persons with challenging needs have a right to a range of options in employment. Not everyone wants to or indeed can work in a sheltered workshop setting. Very few of the intentions noted on page 28 of Challenges and Opportunities have been initiated. We would encourage this government to do what it can to open opportunities.
In order to meet the needs in each of the above areas, we must have more flexible services and funding arrangements that are tailored to each person's individual needs, an objective also stated in Challenges and Opportunities. Services provided should respond to the needs of an individual and should not be linked to where a person lives. They ought to be totally portable. Again, Challenges and Opportunities talks about doing exactly that thing.
Mrs Krauel: We are certainly in agreement with phasing down the institutions. Our philosophy is to build around individuals, to get to know them well, their strengths and their needs. Each person living in a Parents for Community Living home has a circle of support. This is built up by the families themselves and consists of a family member, friends of the family, people from the community and also from the faith communities. We consider this network of support essential in order to provide advocacy and the assurance of real involvement in the community. Parents and friends play an important role in the development of circles. If we provide homes for individuals from institutions, it is quite likely that there will not be a family network. As I mentioned, this circle of friends is usually built up by the family, so we would need funding to provide a co-ordinator-community developer to provide this service.
We feel that anyone living in an institution or a nursing home should be considered for community placement. For instance, we would like to be able to consider individuals living in Sunbeam Home, which is our local institution in Kitchener, for placement in our homes, but we have been informed that extra funding would not follow these persons and we desperately need that funding.
It is essential that a person returning to the community has a day program and/or extra dollars to provide for any special needs. At present, there are no day programs or employment openings. Pete mentioned that there are no spots at the K-W Rehabilitation Services any more for employment for community persons, let alone anyone returning from institutions. Obviously this deficiency has to be addressed, and very quickly.
People with very complicated needs are already living in the community, not just in institutions. We have two families in our group alone who have sons who are 30. They have kept them home all these years. Neither of them is toilet-trained. They have to wear a helmet because they have seizures and they fall. They have kept them at home all these years, so they are not just all in institutions. We need to enrich supports for them. If these supports are in place, the community will be already prepared to respond to the needs of persons returning to the community. We would not like to see the development of a continuum of special services, but rather the services that are already in place in the community should be enhanced.
For example, we have in our community a community resource team which is mandated to assist families who have a member with a developmental handicap or individuals living away from their families. This team provides an excellent service that may well need to be enriched. Also, we feel that community support workers should be available to persons living both at home and away from home, not just in independent living situations.
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As well, at the moment we have a small, pilot, integrated employment program operating in conjunction with the Association for Community Living and the Centre for Research and Education in Human Services. They may have some very valuable experiences to share with regard to the integrated employment. At the very moment, they are working with my son to get him a job in the community because we are hoping that some day he can work there and be treated a little more humanely.
A major concern for us is the indicator from government that numbers of individuals sharing a home must be increased from three to six. We take strong exception to the wisdom of this move. The successful integration of persons with special needs is very dependent upon their ability to adapt to the community and to the community's acceptance of their presence. If they are in large residences, the community will simply see them again as small institutions. It is critical that barriers are not placed in their way to be accepted. The ability of persons to live together in harmony is contingent upon numbers to a great extent. Small homes are both more appropriate for residents and more acceptable to the community.
In summary, we support community living for everyone. We have identified the following as barriers to the achievement of this goal: the lack of flexible funding and the portability of funding; the lack of more homes and a range of living options; the lack of employment opportunities and options for employment; the lack of funding for job coaches. This is what so many of the community jobs depend upon. They are ready to take one of our people as long as they have a job coach with them.
We are concerned about the lack of creative day programs; the lack of support for innovative projects; the lack of opportunities for post-secondary education; the lack of emphasis on relationship building and networking to ensure inclusion in community life.
We certainly appreciate the opportunity to come here today and give you our opinions and our concerns. If we can answer any questions, we would be glad to.
Mr Malkowski: I am very impressed with what you have given us this afternoon. I think it is really important for this committee to consider specific recommendations that would assist us during our deliberations. I am wondering if you agree with the concept that institutions should be closed or should be made available to individuals as options.
Mrs Krauel: I think we are all in agreement that they should be closed.
Mr Heimpel: Yes, no question about it.
Mrs Krauel: No question about that.
Mr Heimpel: It is not the right place for people to live.
Mr Malkowski: That is fine. I think it is very important to provide more resources for parents, because often they do not know what their options are and they end up putting their children in institutions. Resources information is not being made available to them. I think this would certainly help them in making a decision not to put their children in institutions.
Mr Heimpel: I agree. I think one of the problems in Ontario is that we seem to be going the route of a little bit in the community, but institutional models staying in place. I think it is a mistake because it is dividing the use of scarce resources. I am afraid the institutions are gobbling up a major share of that valuable resource. I think it is better to follow the example of some of the other provinces that are closing institutions altogether. It is not the right place for people to live.
Mr Beer: One brief question: On the concern you indicate that the number of individuals sharing a home must be increased from three to six, I am just wondering when that began and whether you know is that because of financial issues or is it that people felt it was more important to have that grouping.
Then if I could, there is your point about the lack of flexible funding and portability of funding. What would you like to see here, that the money would go with the family or with the individual, and that is the way you would determine what would be done as opposed to going to an agency? What sort of correction do you want there?
Mrs Krauel: Could I answer the last part first? I am going to let Keith answer the first part.
I am going to be very personal. My son is 30 and he now has, as I said, the opportunity to work out in the community. Unfortunately, he cannot use the bus at this point in time. When we have tried to teach him, he has thought of it as a game, so he gets lost and he thinks it is great fun. We have applied for the adult services now to give us some funding for bus training. We have been told, fine, we can have the money, but we may not use it for him at the time that he is going to work.
Now, this is ridiculous. If we train him in the middle of the afternoon or in the evening, there is none of this mobs of buses, with six or seven buses coming up to one bus stop, which we have in Kitchener-Waterloo, and this is where he becomes confused. I personally have been agitating and I finally have got our local transit to turn that -- I do not know what you would call it, but that little thing at the front; I am sure you have it everywhere. They were not turning that sometimes until they were driving away and this was very confusing for our people. They have now promised to do that.
The point is that if my son Blair is trained in the middle of the afternoon there is not going to be a problem. Only one bus will pull up to that stop and he will get on and be fine. Where he needs the training is at the actual hours that he is going on the bus, but they have said that unless I accept the funding the way it is, there is no funding.
Mr Heimpel: I think on the affordability issue we are often told that because Blair might move into a home away from home, the funding stops altogether because he is not living at home any more. That is what I mean by affordability. He needs that support just as much as he did at home. Why stop it? That may not be a good example. Once Blair knows how to use the transportation system, he maybe does not need that funding any more, but there are lots of other good examples where the funding is required almost on an ongoing basis. That is a barrier against independent living.
On the issue of the number of people living in a home, when we began talking to the Ministry of Community and Social Services about a second home, when we got indications of a housing grant for a second home we were told, "Three is out, six is in." We feel quite pressured to get away from small is better to the larger, because of costs. We are told resources are not available to accommodate homes with three any more.
I think that is a mistake, because we ought to be looking at the quality of life for all of these people and confusing it with greater numbers is putting that quality issue at risk; it really is. It is not the right thing to do. Besides, I think the community has expressed itself well in that regard. When the house next door is filled up with six persons plus support people, with cars in the driveway, all over the place and so on, it is not a good thing to do. We want the community to be accepting, and on the other hand we do these things that tear it down. So both reasons are quite valid. Please do not do that to us. Do not make us take that quality away.
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Mr Jackson: Let me say first that Elizabeth Witmer, who is a regular member of this committee, had to leave for a funeral in her riding or she would have been present today, but she has briefed our caucus at least with respect to your concerns and has shared them personally with me as the critic, and she sends her best wishes.
Thank you for your presentation. There are a couple of elements I want to focus in on very quickly. First of all, Keith, who is it who is specifically communicating to you the move from three to six residents? I am not catching this.
Mr Heimpel: The local Ministry of Community and Social Services office, the Waterloo regional office.
Mr Jackson: Do they share that with you in the form of a memo or is it a ministry directive?
Mr Heimpel: No. It is verbal, but it is indicated as a ministry directive.
Mr Jackson: Can you share with us who the individual at that office is. I want to get to the bottom of that.
Mr Heimpel: The deputy minister was in town a couple of weeks before Christmas and that is when it was made a lot more official than it was in the previous telephone conversation, but the rumbles had already started even in November.
Mr Jackson: Have you had any discussions? I know of situations where we have four, where we have sufficient bedrooms. I have worked in my own community for these homes. We have acquired several and we draw the line at four. If we get a fifth bedroom, it is an extra bedroom if a family member wishes to stay, but not for respite. Are they suggesting that you start at six and negotiate down to four? We know that is a game that is played.
Mr Heimpel: It could be. We have told them we think we can manage with four.
Mr Jackson: Have you heard anything from the municipality? I know we worked for two years to eliminate exclusionary bylaws in this province and Kitchener was one of the target communities that was discriminating badly against groups, trying to categorize them as group homes and impeding them. It strikes me that runs counter to the spirit, by starting to increase the numbers. You are really referencing that a community backlash might be what happens as a result of the ministry pushing you in this direction. They are contributing to bad relations within a community at the very time when relations need to be improved.
Mrs Krauel: That is right.
Mr Heimpel: I agree. It is kind of against the spirit.
Mr Jackson: My final question -- and thank you because there is a lot I wanted to cover with you -- is on continuing education program access. This is a big bugbear for me. We have heard many presentations about that is it for a student at age 21. In fact we have evidence that at age 20 they are cut off. It strikes me that we are seeing sort of a perverse set of priorities from school boards and others in terms of we will partially fund advanced bridge for adults as continuing education and adult education in our schools, but we do not have the commitment nor the linkage in order for the education system to do follow-up life skills, which is really the vehicle that would be helpful for your son.
Mrs Krauel: It certainly would.
Mr Jackson: The school could operate those programs at varying times. I notice we are doing it for seniors, for activation following strokes. There are some great pilot projects around the province. But it seems to me the school boards are not helping us to find an agenda for this group of citizens. We have grandparent linkage programs for older people, but it seems that this community is just -- we are glad that is over with for them and that is the end of it.
Just briefly, have you had any discussions with the school board about shifting some of its priorities for programs so that it can embrace them? The legislation does not prohibit it. The trustees have the right and ability to move in that direction. Have you any comments on that or any discussions with the Kitchener-Waterloo board?
Mr Heimpel: I am on the K-W association's committee for post-secondary school opportunities. I think we are really talking about the community colleges here. I think the school boards -- Ottawa let them off the hook totally -- are doing what they can. I think they are being fairly flexible too in our area, the separate school board especially. It is the community colleges that are closing the doors to our people. They have some supports available, but the problem becomes when you need a support person to help get around the campus of the college. Do you have to pay tuition for the support person as well? They are saying yes right now and they are not very willing to even work with us on a pilot project to let us show them how we think we could maybe get together and make the program work. Of course, they are citing the lack of funds to do this, etc.
Mr Jackson: That is very helpful.
The Vice-Chair: I am sorry. We have run out of time. I would like to thank you for your presentation. We must move on. I am pressed. We have two other groups appearing before us.
FEDERATION OF ONTARIO FACILITY LIAISON GROUPS
The Vice-Chair: I call on the Federation of Ontario Facility Liaison Groups. There are a number of you from that group, so I will ask you to introduce yourselves and make your presentation. I remind you, as I do all of the groups, that you have half an hour and we have to stick to that time limit. You can divide that half-hour in whatever way you deem appropriate.
Mrs Paproski: We appreciate the opportunity to come here. I am Margaret Paproski, president of the Federation of Ontario Facility Liaison Groups. Archie Leduc is our treasurer; Stuart Mussells our vice-president, and Dr Alan Bruce-Robertson another member.
The Vice-Chair: I just mention to members of the committee that we have a package that was made available by Dr Bruce-Robertson. Our research officer has it available for your use. It is filed with her. Please proceed.
Mrs Paproski: There is also a package which was faxed from me last Thursday which you should have received. I thought what I would do would be to speak to the highlights on the second page, not go through the document itself. It was pulled together very quickly on Thursday when we found out we had the opportunity to attend.
I would just like to further state that we are all volunteers, that we have no paid assistants or such. We come from a wide area of the province, representing facilities at Thunder Bay; I myself Rideau Regional Centre, Smiths Falls; Archie Leduc is with Oxford Regional Centre; the other two with Huronia Regional Centre. We also have a representative here with us from Southwestern Regional Centre and other representatives from Prince Edward Heights, and we also have somebody from Muskoka Centre as well. We represent, in total, eight different facilities.
We started our organizations when the facilities began to operate as parent support groups. Today they would be called advocates. In about 1982 we felt that the needs of severely, profoundly multihandicapped people were not being addressed by what is now called the Ontario Association for Community Living. We are also, most of us, members of that association and many of us have spent many hours in developing community programs. We are fully in support of community programs for people whom we feel benefit from them.
We must, however, address the issue of the severely, profoundly mentally retarded person who may have other handicaps and who is aging. In the institutions today, at Rideau Regional Centre, for instance, the average age is 35. At southwestern, out of a population of 600, only a few are under the age of 35. So their skills are declining.
The federation had established a subcommittee to work with the ministry last year, to tour community facilities and see what was developing in group homes, workshops, etc. We have visited two group homes in Ottawa. Each one cost over $300,000 to acquire and to furnish. They accommodate four to five residents and have 24-hour staff. During the daytime there are three counsellors, plus administration costs. We are looking at a very, very high per diem rate.
We have to be realists. We have faced up to the fact that our children are handicapped. They have acquired a number of skills, but they are never, ever going to be employable, not the majority of those who currently live within the institutions.
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Also, with these particular group homes I visited, the agency which started up those homes is now starting to go into deficit budgeting. We do not think the multi-year plan has been well thought out in terms of the total cost if we are to provide equal, universal services throughout this province for people with handicaps. In fact, it will develop privileged services for a few. Others will receive below-average services and others in desperation will receive none.
The budgets, also under this multi-year plan, are being squeezed at the institutions and having adverse effects. For instance, at Rideau Regional Centre we have been without a speech therapist for two years. We are now in the position where we have some residents who have, with great difficulty and great work acquired skills in communications using the Bliss symbols or sign language, and they have counsellors who cannot use those communication skills. Can you imagine the frustration after many years of developing a system of communicating and now being in the position where your counsellor cannot communicate with you? We are losing some of our best counsellors, the well-trained counsellors, because they have to look for their own young families, their own career opportunities and therefore if there is a chance for them to get into the community to work, that is where they are going.
I would like now to go into an area which we feel very strongly about. The very specialized needs of the aging severely, profoundly multiply handicapped adults have not been addressed. It has been estimated that the residents within facilities require five to six times the medical care of the average population. Many of them have limited community skills, so they are very vulnerable and they need protection and security. The institutional service can provide that.
My daughter, for instance, has been lost, on a short basis, for 20 minutes. Immediately the search and rescue squads are called out. She functions at a two or three level intellectually, communicates at maybe a six-month level. She was found. Immediately, the doctor is there to investigate to see if there has been any problem, and there is the support to help her get back into her little milieu and feel the security of her friends.
What is not recognized is that the institutions are home. They are home to some people who have lived there for 30 or 35 years, yet under the multi-year plan it is proposed that these people who have lived in this home are to be discharged. To where? To foreign communities where they have no friends? In an institution they have the opportunity to make friends from a wide group of people. They can develop supportive relationships based on affection and similar interests. They have an opportunity to give and take, help one another and therefore build up their self-esteem. They belong and feel accepted there. It operates as a small community.
There is a variety of activities which can take place without transportation problems, without having to brave the elements of the snow or the rain and all these other things that are especially difficult for physically handicapped people. There are developmental programs, adult education, work opportunities, recreation, swimming, sports, concerts, dances, parties. They have a choice of whether to attend these or not. They can walk down the hall and hear a great party going on and say, "Hey, I want to go in for 15 minutes," and then it becomes too much for them, the stimulation is too great. They have the opportunity then to go back into their private quarters to calm down. They have choices.
They also have choices to go into the community. I must say that the $100 per month they are receiving has enabled them to do this much more. They are going to ball games, hockey games, going out to church functions, to concerts, on small trips. Certainly from Rideau Regional Centre they have come down to Canada's Wonderland. They are able to get out, maybe to go to a restaurant with a couple of friends who support them. In fact, it is easier: My daughter will go with a counsellor and a couple of other residents into a restaurant much more easily than she will with us. She is happy with the group she is with.
I had the opportunity of keeping my daughter at home until she was 11, and I saw what the community did to her. They rejected her. As she got older it became even more so, because she became more strange looking to them. She is aware of that and she withdrew, to the point where I could barely get her out of her bedroom. Now that she has received self-confidence within the institutional setting, where she knows she can do some things well and she can assist in certain things, she is more forthright, outgoing, happy to be involved in things. She has that security, she has that supportive environment.
Also, within the institution they are challenged to improve and to develop, but with professionally trained staff and support staff the stress and anxiety levels can be kept within normal limits. Too often in the community we have seen people who are developmentally handicapped ending up in psychiatric wards because they cannot take the stress of normal life. As I mentioned, within the institution they have tremendous freedom to walk down a hall and think they are not supervised, yet in fact somebody is keeping an eye on them when they need to.
However, under this multi-year plan we do have some very grave concerns about the institutional life. It was 10 years ago developing a more normalized environment for all its residents. Wards were being developed into apartment settings and day programs were being developed. People were being treated as individuals. This budget squeeze is now being placed on the institutions themselves. As the population declines, instead of using the extra space to develop an environment of maybe six people within a ward, make it into a bungalow-type setting, they are closing those areas or, for instance, in Huronia I believe the Ontario Provincial Police is using some of the excess space. Many of our residents are being placed into unacceptably overcrowded wards where they have no privacy, no opportunity to keep their own things. This multi-year plan, because it has not addressed the cost of caring for people either in the community or in the institution, is adversely affecting the quality of life in the institution.
On the other hand, we have some very good institutions and we really would like an answer to the question we have asked many a time. Midwestern, outside Palmerston, is a beautiful little institution where they do have apartment-like settings, yet it is slated for closure in 1994, while another one which is not as modern, does not provide as high a quality of life, is to remain open. Muskoka: a beautiful piece of property, marvellous opportunities to develop a good quality of life for people who need a supportive environment. It is slated for closure. We must question the rationale of the multi-year plan. In whose interest is it being implemented? In our opinion, not in the interests of profoundly mentally retarded adults, especially those who have additional handicaps and who have limited communications skills.
The federation, contrary to probably all the submissions or the majority of submissions you have heard today and yesterday, strongly supports congregate care as an option. A very important aspect of quality of life is choice. We believe that choice should be there, just the way that choice is available for senior citizens who opt to move into a retirement home or people who join the armed forces, who have a very specialized community. You can see it today with the men going to war, how those communities band together to support each other. We think developmentally handicapped people should not be denied that choice.
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The last thing I would like to address is that we have called time and time again for cost projections of community services and institutional care. We have not yet seen any valid or any comprehensive cost projections for this multi-year plan.
I would like to thank you for this opportunity, and we would welcome any questions you may have.
Mr Malkowski: Thank you for your presentation. What we heard so far this afternoon from two different groups, People First and then the parents of disabled people, is that they both are very strongly in support of closing the institutions and transferring those people into community living. So it is interesting to hear your perspective about that situation. Would you support their opinion? What are your feelings in terms of closing the institutions?
Mrs Paproski: We would like to see that option remain open. We do believe there should be improvements and that the style of life should be more normalized, that people should not be congregated unto large open wards. But there is an opportunity to develop that community, which I think would be very supportive and should be an option, just an option.
Mr Malkowski: On page 3 of your presentation, you say you support the transfer from the institution to the community if all the support services are available. Can you clarify what you would look at as criteria for "all support services?"
Mrs Paproski: Support services within the institutions provide medical, psychiatric, psychological, physiotherapy, speech therapy, developmental training, teaching, social and recreational supports and dental care by people who know how to work with residents who are handicapped. I am going to let Dr Bruce-Robertson respond to this a little further, because he has a greater awareness of some of the conditions of the people.
Dr Bruce-Robertson: The quality of services is so high in the institutions that we reckon it is going to be very hard in most cases to duplicate them in the community, certainly when they are scattered around. Contrary to what you have heard from some people, none of you is taking sufficient account of the societal aspect of living. It is all very well to be living in Utopia and saying that normalization is the thing we should aim for, that we should have, and that it is just around the corner. The fact is that it does not exist as yet.
My own experience of 20 years at a medical drop-in, dealing with a lot of schizophrenics living in single, supported, independent living, is that none of you likely have any concept of the tremendous loneliness that most of these people suffer. Because of this loneliness, they sell their birthright. They have all sorts of friends for the first week and none for the second. I will not go into all the other horrors that occur through trying to buy or obtain friendship. It is something that those of us who are fortunate here cannot begin to imagine, what these people who are lonely will do to try to get a friend who will bunk in with them, who will then scrounge from them, raid their larder and everything else.
I think we very much need to think of a societal model. At present, unless we are able to change society so that we have a great many more volunteers, in many instances people are going to be imprisoned in their group homes unless they have somebody to take them out, because unless everybody goes out at the same time nobody is going to go out, unless you have an extra person to deal with that trip or transportation.
I believe some thought has to be given to this aspect, and I do think that some of you may not realize that there are parents who believe, quite honestly, that their children are better off at present in a congregate model, cottages on an estate, on one of the schedule l facilities where they have a great deal of freedom. They get into towns and they have trips and various other things and we know that they are safe. Many of these people cannot be trained. They do not have the reflexes to react quickly enough to traffic problems, or other problems, for that matter.
I think there is something to be said for this sort of setup, which should be included. It is not excluding anything else. Everybody is individual. Give them a chance. If it does not work, though, do not push it, but take them back and try something else.
The trouble with Challenges and Opportunities is that it is a one-way street; you can only go one way. You are expected to be ever better and to go from one stage of productivity or creativity to another. We all know that most of our clients are going to age more quickly, they are going to lose their skills, and unless they are stimulated maximally, which they are, by and large, in an institution, they are going to lose a great many of their skills. You see it all the time.
The Vice-Chair: I have two more questioners, Mrs McLeod and Mr Jackson, with approximately seven minutes left.
Mrs McLeod: I appreciate what you are saying and I think I understand it, but I am struggling with it. I guess the reason I am struggling is that I have been peripherally aware of the field for some 20 years, and when the first trainable mentally retarded classes were being mainstreamed into the regular school setting, I suppose at that time I wondered how it could work and went on to see how well in fact that worked. But I continued to remain sceptical that the more severely developmentally delayed could ever be mainstreamed into a regular school setting to any degree at all, and discovered some years later that in fact some quite marvellous things had been achieved in that direction.
So the reason I struggle, and I am sure I have not anguished with it to nearly the same extent and with the same constancy you people have, is that issue: How do we define the limits of what is possible? Particularly, how does government set those kinds of limits, and are we in danger, if we try to define what is possible in terms of community living, of limiting the support we provide? I think the point you make is that it requires tremendous support for community living to be successful. If we do not have some conviction that it can work without setting limits around it, we will set limits on that support.
To make it a question, do you not feel that if we were to maintain an institutional setting as a choice, by the very fact of doing that and by the realities of doing that -- as you indicated, we have to be realistic -- that would limit the choices for community living that we could provide?
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Mrs Paproski: I think, if you look at the cost figures of the operation of an institution versus the costs of operating group homes, you will find that it is infinitely cheaper to have people in congregate care. That is taking the person out of it and saying that we are just looking at the dollar figures. But we have to look at dollar figures. How can you maximize the use of your dollar figures to provide the most opportunities for the most number of people? We have had to face that as parents.
You talk about mainstreaming in the schools and yes, there have been tremendous successes. Unfortunately, we do not hear about the failures. My daughter was a failure in a trainable mentally retarded school. We had her in England for two years where she was in a special school where she received one to one. When we came back, she could not cope with the stimulus of the TMR school and because she had very extreme epilepsy they could not cope with her epilepsy. We do not hear about all the failures.
What we are asking for is a recognition of the very special needs of probably a very small portion of the population. But just as we recognize the needs of senior citizens as they become more disabled and try to provide supports for them, whether it be in the home or eventually in an institution when the home can no longer support them, I think developmentally handicapped people should also have that type of option. I would have to say that people who live in institutions and have experienced life in the community often want to go back to the institution; it is their friends.
Mrs McLeod: I am appreciative of the very high degrees of support that are needed by the severely developmentally delayed, but for an institution to exist as we know it, it requires a fairly large population. As I hear you describing this small and fairly select group of people who need what you are describing as institutional care, it sounds to me as though you are talking about something very different from the institutions as we know them, almost to the point of a somewhat larger group home model.
Mrs Paproski: It is quite possible. We figure this is the government's job, to determine what the figures should be for the population and what is cost-effective. That is why we have been asking the question for the past six years. We have said that we were never opposed to the closure of institutions if the move from the institution could be proved to be better and could be done, but we must always take into consideration the social needs of people. It is not sufficient to move somebody into a group home where they sit and look at the other four or five people all day. That is not putting them into a community. The institution is a greater community where they can move about freely. They can choose their friends not just from the people with whom they live or with whom they work. This is a question that I think this government has to address.
Mr Jackson: I did not appreciate the brief as much. I have read the material that has come from your association; you have been kind enough to send it to me. I do not necessarily share your view and I think it is fair that I share that with you. I think we all can be imprisoned by our own opinions. The doctor referred to being imprisoned in community living settings and we have had ample evidence of that being described about life in institutions. In spite of that difference we share fundamentally, I would like to ask you if you are concerned with some of the information about the use of restraints, the use of locking -- this is the only non-criminal element in society, that we lock up in an institutional setting or any setting for that matter -- and further, if you acknowledge, for example, the incident at Brantwood, that it should be subjected to a provincial inquiry. I am just trying to get a clearer sense of your thrust. By focusing on the multi-year plan so much perhaps you are not focusing on the very things that you agree with community living in terms of life in institutions that need serious reforms and perhaps the public has been denied the real truth about institutional living.
Dr Bruce-Robertson: I think, as always, it is a tremendous dilemma as to how much you should allow a person to self-destruct. We have the same problem in simple life. How far are you going to go to prevent a person from committing suicide?
Mr Jackson: No, I am sorry. I know you are a coalition of eight various groups. I understand the concerns within the Friends of Schizophrenics organization and I know its position vis-à-vis your position and it is different. We do not wish to get convoluted with persons with mental illnesses. We would hope that as a practising physician in this province you have not made the distinction. We would like you to speak purely to developmental disabilities as we understand them and not the schizophrenic. That is your second reference to that and I would like that to be clear.
Mrs Paproski: Excuse me, I think we have done this. I have just a short word before you answer. You must recognize that a good number of the people in institutions are dual-diagnosed. They do have psychiatric disorders. They are not simply developmentally delayed.
Mr Jackson: I understand that, but it would have been helpful to make that distinction. I would hope we would not be talking about that group at this time.
Dr Bruce-Robertson: I was just saying, though, that to me there is a great parallel and that many developmentally disabled can make a decision that any one of us would think is contrary to their best interests. How far you go to prevent that, whether it is by constraints or sedation and so forth, I think is a very difficult question.
Mr Jackson: Even shock therapy. Sorry, that is scary.
The Vice-Chair: I am sorry. We have run out of time. I apologize, but we do have to move on. Thank you for your presentation.
ONTARIO PUBLIC SERVICE EMPLOYEES UNION
The Vice-Chair: Our final presentation is from the Ontario Public Service Employees Union. Please come forward. Welcome to the committee. I would ask that you identify yourselves and I would remind you that you have half an hour and you can divide that half hour as you deem fit. You may allow for questions at the end of your presentation. Please proceed.
Ms Whitehead: I am Carol Whitehead and this is Nick Di Salle. We are both research education officers at OPSEU.
We welcome this opportunity to express some of our concerns about the multi-year plan. It is not our position to do a comprehensive analysis of the plan. What we will do is offer you some of the concerns we hear from our membership as well as ideas that we believe would help in our mutual concern to address the needs of the developmentally disabled. We express these concerns in general terms because we feel it is more appropriate to discuss the substance in a forum that includes other constituents.
We know that you are truly committed to addressing the needs of the developmentally disabled in Ontario. We hope that you will take seriously our concerns around the MYP. We know that you also want to be truly responsive to and representative of the various communities and interests that you serve. In order to do this in a meaningful way and address the needs of the developmentally disabled in this province, we make one recommendation very strongly: Establish a task force to do a comprehensive analysis of the current system of care for the developmentally disabled in Ontario. This task force should include consumers and their families where possible, parent groups, community advocates and front-line bargaining unit staff. OPSEU would be pleased to serve on such a committee and we are sure that others concerned about this issue would be willing also.
This committee will enable all of us concerned about the issue to look at what parts of the MYP have been working well and what have not and together develop strategies to put services to the developmentally disabled on the right track.
The debate about how to best deliver services to the developmentally disabled is a long-standing one. Over the past decade, Ontario's provincial governments have chosen to divest these services under the guise of communitization following the pattern established with the deinstitutionalization of psychiatric patients.
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Divestment of developmentally disabled facilities began under the former Conservative Comsoc minister Frank Drea, who was a strong proponent of low-cost options for the disabled at any cost to the disabled themselves. This divestment was motivated by a desire to distance government from the administration and delivery of services in order to gradually withdraw its level of funding without being held accountable for the outcome; in short, to nickel-and-dime services to the developmentally disabled and the community agencies that serve them.
We should collectively and co-operatively reassess both the types of services and funding structures to services for this community. It is our view that if the new government is committed to responsible care for the disabled, with community control and community-based services, a comprehensive review of the current system must be done before the current plan is fully implemented, not after. Otherwise, we will be confronted with more Cedar Glens, and we fear that care for the developmentally disabled around the province will be worse instead of better. OPSEU is committed to working with the community and government to jointly develop a high-quality, consistent system of care for the developmentally disabled.
It is our belief that an effective system of care should at least include the following principles:
1. That the community of the developmentally disabled is as varied as the population as a whole. Therefore, a truly effective system of services will contain a continuum of living models; for instance, village within a village, groups homes, family support programs, etc. The government should explore these options fully, many of which are successfully used around Ontario and in other parts of the world, before it places people into situations which are often worse than those in which they now live.
2. This system must be open-ended, enabling people to flow through the system as they need, not as bureaucratic plans dictate.
3. Clients, and their families where appropriate, should have the choice as to where and how they wish to live and when and if they want to move. Again, this choice should not be predetermined by any bureaucratic plan, but according to the clients' needs.
4. The system must provide a quality of working life that will permit direct care staff to effectively and efficiently deliver the needed services. Currently, many facilities are underfunded, understaffed and undertrained -- as I am sure you have been hearing -- a situation that serves no one well. The quality of work life of front-line staff is crucial to the success of community integration. As anyone working in the human services can attest to, if staff are undervalued and working conditions are bad, service to clients will suffer.
5. The communitization movement to this point has not fully met the objectives of its promoters -- normalization -- mainly because of a lack of adequate funding to meet the true needs of community-based service delivery. Funding arrangements that reflect the actual financial needs of community services must be developed again before more developmentally disabled people are dumped into underfunded community agencies.
6. The multitude of different employers in the developmentally disabled field has led to the current situation of erratic, inconsistent staff training and wages around the province. There is a need for provincial standards for staff training and qualifications in order to ensure consistent and high-quality delivery of service. Also, sectoral bargaining for workers doing the same work in the same field should be considered.
7. The placement process for clients in any facility must be an open and responsible one involving residents, and their families where appropriate, front-line staff, community agencies, etc. The goal of placement must be to provide residents with the broadest possible perspective on available living alternatives, rather than forced movement due to bureaucratic rationales.
8. The system must be completely and adequately funded by the provincial government. Funding for services to the developmentally disabled should not and must not be dependent on charities or successful fund-raising.
OPSEU is not opposed to deinstitutionalization. Our concerns with the multi-year plan stem from the fact that this plan was formulated by governments whose motivations were political and fiscal and had little to do with ensuring the development of high-quality, consistent, adequately funded alternative living models.
The prime motivation initially of the MYP was simply to eliminate one option of care for the disabled, large residential facilities, with little concern for the clients and staff. It failed to provide the full range of services and living alternatives we believe the developmentally disabled, their families, front-line workers and the community deserve, and also failed to ensure the safety of the developmentally disabled in society.
The following are some of our concerns about the effects of the current MYP on society, as well as some of our concerns about the placement process and provision of services in the community. Again, however, we must underline that this list is not conclusive and we strongly believe that if the new government is committed to ensuring safe, quality care, a comprehensive investigation must be done with community and staff input.
Our summary of concerns about placement and process:
1. Placements currently are driven by numbers to be placed, determined by bureaucrats rather than by client needs and readiness. As the MYP is currently structured, each region determines how many clients must be moved in a given time frame in order to fulfil the bureaucratic aims of the plan; ie, to close large facilities. If I could just interject, I believe that has been modified somewhat so different bureaucrats determine the numbers of clients. However, our point remains that placements are determined by bureaucratic rationale. Client need and readiness for placement is secondary to the bureaucratic decisions to close institutions and move specified numbers of clients within certain time frames.
2. The numbers of clients to be moved are determined by regional managers, with no input from clients, their families or advocates, or front-line staff who know the clients.
3. We also have grave concerns about some of the facilities used and appropriateness of some placements. Recently our members have reported situations where clients have been readmitted to large institutions because their group home placements and staff are ill equipped to deal with them. This situation must be fully investigated before more people are placed in facilities which may very well be worse than their current one, if not downright dangerous.
4. The current lack of provincial standards for staff training and staffing levels is of grave concern to us.
5. Insufficient or non-existent monitoring of conditions in facilities, as evidenced by the recent inquest at Cedar Glen Boarding Home and the auditor's report, must be addressed. It is irresponsible to place clients into facilities that are not inspected and monitored sufficiently.
6. Clients who have returned to facilities requesting readmission have been turned away because of the current focus on closing institutions regardless of client need.
7. Tracking of clients to assess and ensure their coping in the community is inconsistent, sporadic and sometimes totally non-existent. As a general rule, it is for a very limited time period; for someone who might need support services for the rest of their life, this does not seem sufficient.
8. Our members in corrections and psychiatric facilities express concern at a seeming increase in the numbers of developmentally disabled in their institutions in the last few years. We suspect a correlation between this and the multi-year plan in its current form.
9. The current system is not open-ended, with a variety of types of facilities and services available, and clients are not able to move throughout the system as they need.
10. Clients and their families have little choice in type of placement models available. Some of the few facilities that offer a variety of residential styles are being divested.
11. Services are not readily available in all communities.
12. Health services in the community are often unable to deal with the client; even the Canadian Medical Association has expressed this concern.
13. Current schedule 1 facility staff are provided few acceptable opportunities to remain in the field of service delivery, despite having devoted their lives to this field.
Effects on the community: As the multi-year plan is currently formulated, those who suffer most from its problems are the residents and those who take care of them, whether they are workers in the facilities, workers or volunteers in related organizations, home care workers or family. These helpers are predominantly women.
The MYP has operated as a policy benefiting government whose priorities are not people, at the expense of some of the most marginalized and exploited people in our society and women. It is, in its current formulation, a discriminatory policy because women bear the brunt of care if they want to look after their own families or members of their own communities. Governments have used this policy to reduce their deficits and provide cut-rate or free services by often using women as employees to do the same work for less money in community agencies.
Above are a few of our general, and in many cases fundamental, concerns about MYP as it currently stands. As we stated earlier, we believe very strongly that to act responsibly, the new government must initiate a review and assessment of the current MYP. This must be done before the plan is fully implemented, or more Cedar Glens will occur.
OPSEU's commitment to social unionism is a matter of record and we will continue to strive towards a more socially just and responsible society. We look forward to working with government and all others concerned about this issue to develop and enhance social services and programs available to the developmentally disabled.
Mr Owens: I would like to thank you folks for your presentation and the rapidity with which it was put together for your presentation today. I would like to address my questions to sections 3, 4 and 5 in your summary of concerns of that placement process.
My first question is about the revolving-door syndrome that you address, with clients rotating back to institutions from group homes due to poor staffing or because their staff is ill equipped to deal with them. Do you have any sense of numbers as to how many people have been rotated back and forth? Does it occur with some regularity? To your knowledge, is the ministry tracking this type of problem with a view to perhaps resolving this kind of an issue? I do not think you need to be a rocket scientist to figure out the impact that this type of revolving door has on both the client and the staff, as well as the family involved.
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I guess sections 4 and 5 essentially could be melded into one. The CUPE local that represents the folks that work in the group homes essentially expressed the same type of concerns about standards and training as well as inspections within their own group homes.
Could you just elaborate a little bit more on whether inspections do take place, how often they do take place, and are institutions forewarned of an impending inspection so as to allow time for any kind of preparation or cleanup or painting of the walls or whatever folks do with these inspections?
Mr Di Salle: I think it is a difficult question to answer, specifically because there is a lack of tracking, there is a lack of monitoring. Most of our members who work in this field report to us on an ad hoc basis when this happens. We have tried over the last year to start monitoring it ourselves. We feel that it is not our job to monitor breakdowns in placements. We have continuously approached the government, on several occasions, to work with us in monitoring the success or failure rates of people moving into group homes.
I was up in Huronia last summer and I spoke to several members. I cannot give you specific names and dates because it is confidential. But several people who were placed from that facility -- one in particular apparently was quite destructive and in one of the group homes the furniture after a few weeks was destroyed and this client was returned to the institution. They said, "We can't handle him."
Stories like that keep coming to us. It is difficult for me to give you numbers because we have a variety of different members, both in institutions and in the community. But that is one thing I think is essential, and we have asked for it in our brief, that a proper monitoring and tracking system be established.
We had similar problems with the ex-psychiatric patients that would be institutionalized. We discovered a secret report by government that over 900 of these people were in fact in correctional facilities. That has nothing to do with developmentally handicapped, but I am saying it is the same problem. There is no system to follow them, to find out how they are doing. It is very haphazard; in some cases a three-month follow-up, in other cases a six-month follow-up, but there is no standard. That is one of the major problems.
Mrs McLeod: I am quite prepared to accept the fact that the concerns that OPSEU brings to this are concerns for the clients and the people involved. I would have hoped you would have understood that the concerns the government had in instituting the multi-year plan were equally motivated by concern for the client.
I was a little distressed, obviously, to note the references to fiscal and political gains. I was part of one of those governments and I can assure you that there was no political gain expected, sought or realized in any way, and certainly there was no expectation that there would be a financial saving through moving people into the community, that if the supports are to be provided that are needed for community living to be successful, it could be equally or more costly than the program of maintaining people in an institutional setting.
There is no denying that there are problems, and one of the reasons why this committee is wanting to have the hearings is to be able to focus on how successfully the plan is being carried and, where there are problems, to encourage government to deal with those problems in a very real way so that common goals are being achieved.
I worry a bit when the references are made to the psychiatric deinstitutionalization because I think, as we look back on that, it is one we need to learn from, that the community supports were not in place and there were problems at follow-through. But I would hope we would not put the two into the same discussion because there was a real effort made to deal with this in a very different way than the psychiatric deinstitutionalization that was carried out.
To make a very brief question, if the problems can be addressed, if the supports can be provided, do you feel OPSEU would in fact be supportive of deinstitutionalization?
Mr Di Salle: I think we stated that fairly clearly and categorically. We are in favour of deinstitutionalization. The problem is in the way it is implemented. That is what is bothering us. To clarify the political reference, there is no doubt in our minds that in the late 1970s there was a growing political desire to distance the governments, whether federal or provincial, from the direct delivery of services. Coincidentally, the community started to request more and more empowerment and these two desires seemed to fit very neatly together. We understand why the communitization, but we would like to clarify some of the motivations behind government.
You may disagree, but it is our opinion that it is in fact a Reagan-Thatcher type of neo-conservative thinking that says government must be out of this service. It happened to fit neatly with the desire of communities to say we want more empowerment. But the government's intention was, I think, to dump the complete responsibility for these people on to the community without the proper funding.
We believe in communitization and we believe in deinstitutionalization. But we also believe strongly that these individuals and their families should not be pushed around by bureaucratic plans. We believe they should have the choice, and one of those choices might be a medium institution, a large institution. I was listening to your question earlier on about what size an institution should be. That is something that should evolve with time. It should not be dictated by bureaucracy or by political desires.
Mrs McLeod: This will not be a question, but just a follow-up comment. It is not a coincidence if government direction happens to fit neatly with community desire. I think it is a responsibility of government to respond to the interests of the community. I do not have a need to attribute different motivations for that.
Mr Di Salle: We see different motivations.
Mr Jackson: I have a whole series of questions and I know time is limited, so let me just ask you, what the heck are you talking about with discovering a secret government report as it relates to 900 residents? What are you talking about here?
Mr Di Salle: As I said, it did not relate to this issue.
Mr Jackson: Then why did you bring it up?
Mr Di Salle: To explain the problem of trying to track people and to find out how they are doing in the community. When they put in the deinstitutionalization of psychiatric patients, they did not follow up, and consequently people ended up in the wrong place.
Mr Jackson: What did you do with this report when you got a copy of it? Did you make it available to anybody?
Mr Di Salle: I do not think that is the issue here.
Mr Jackson: You say you have the interests of these residents at heart. Do you not think that giving this kind of a report daylight, exposing it, would help the residents? Why would you allow it to remain secret and use it in what I consider a rather offensive way before this committee?
Mr Di Salle: It is no longer a secret, Mr Jackson. It was in fact released, but it was for a long time held away from the public.
Mr Jackson: By both you and the government apparently.
Ms Whitehead: As soon as we got it, it was released in a press release that OPSEU put out as soon as we heard about it.
Mr Jackson: Okay. I have read the OPSEU memo that was sent out where you referred to you have stopped everybody, only those with their bags packed, that you have won your fight at the local level. Does that sound very much as if you yourselves are not embroiled in political and fiscal battle?
Mr Di Salle: No, not at all.
Mr Jackson: Are you not meeting your own perceptions of government with similar action?
Mr Di Salle: No, not at all.
Mr Jackson: There was an information picket in Oakville at the Oaklands Regional Centre. It is controversial at the moment, no question about it. But there was not an effort to help take the issues of the residents' concerns and relating to them the issues of the multi-year plan. That is why I have circulated this to the members of the committee, "Oaklands Workers Call For Change."
We are getting some interesting things from your union. For example, during the information picket they were handing out pamphlets warning that local businesses have been ransacked and that you are somehow unsafe letting these people out into the community. It goes on to your local representative in discussions with the media saying that parents really do not want their children taken out of institutions. Is that the kind of conduct you are condoning in terms of information about the sensitive issues involving deinstitutionalization and the legitimate right of those individuals who would like to leave institutions?
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Mr Di Salle: I think the union is on record, and we have repeated it today, that we believe that people who are in institutions have a perfect right to leave and have a perfect right to choose where they would like to live. Our members are probably raising some of the concerns that they have observed in the community, but our members are not against people leaving.
Mr Jackson: So you do not agree with the statement that most parents do not want their children leaving facilities. You do not agree with that statement.
Mr Di Salle: I did not say I did not agree with that statement.
Mr Jackson: I asked if you did.
Mr Di Salle: There are parents who do not want their children to leave the institution because they feel there is better care in the institution than they would get in the community. Of course, I do not know what every parent thinks. It is pretty difficult to find out.
Mr Jackson: The final question has to do with the issue of Brantwood, and you were careful to only reference Cedar Glen and not Brantwood. Do you believe there should be a full public inquiry into the Brantwood situation? Do you support that?
Mr Di Salle: I think that standards and inspections need to be more structured, of course, to prevent that type of thing from happening.
Mr Jackson: Carol is nodding her head. I just asked a simple question: Do you support a full public inquiry?
Mr Di Salle: That is up to the government. We would probably like to get involved in finding out what is going on in some of these places, but certainly we would support looking into that.
Mr Malkowski: Your information has been helpful. From the other presentations that we have heard this afternoon, the People First group, as well as the parents who support community living, they feel the institutions should be closed and all residents should move to community living. Do you feel that the institutions should be closed but perhaps become resource centres to provide services to the community? How do you feel about that?
Mr Di Salle: I travelled to all the institutions over the last year and a half and there is a tremendous variety of people living in institutions. Do not forget, OPSEU has almost 2,000 people organized who deliver community-based services, and I say the majority of them are in agreement in saying that in some instances some types of clients do in fact need the services available through an institution or through a large residential facility. How many of them there should be and how large they should be is something that I think we will clarify with time, but I do not believe that personally, from what I have seen, there will come a time when there will be no need whatsoever for a large residential facility. I find that hard to believe.
Mr Malkowski: I would also just like to make a point around the use of the term "institution." When I hear the term, I certainly shudder and I think back to 18th century horror stories. It feels jail-like. I do not know how many of you on the committee have yet had a chance to tour around some of the facilities. Recently I visited Darcy Place -- and I presume by "institution" that you are referring to the schedule 1 government facilities. I do not know how many of you had a chance in particular to visit Darcy Place and Edgar, both of which are referred to as institutions. They are just lumped in, but as far as I am concerned I was quite pleasantly surprised that they had nothing to do with what I thought institutions would be. They really are communities. So I think it would be useful for members on the committee, if you are going to be investigating this issue further, to visit them and get a sense of what the options currently are. I have found that incredibly useful myself and I think that the use of the word "institution" really clouds the issue.
Mr Di Salle: I would like to add something to that, and I think it refers back to what Mrs McLeod was talking about earlier, that the government not only thinks institutions are large residential facilities, it has an opportunity to diversify them into group homes and run them, where the standards are kept up, where the staff is well paid, where the staff has opportunities. But what the government then does, it goes a step further and divests that. It says, "We don't want to run it at all any more." It is not a question of their simply providing a community service. The government can provide community-based services. It is when they start divesting them to non-profit boards that we see their real motivation.
I had a letter that was written by the previous minister, Mr Sweeney, and it shows a breakdown of transfer payments to divested institutions, divested services and government-run facilities. Over a seven- or eight-year period, you saw an 11% or 12% difference. It is the nickel-and-diming opportunity that they have once they have divested this. They divest it and then they fool around with the funding and 10 years later you find out you are running to the local United Way or to a charity or you are doing fund-raising to meet your budget. That, I think, is the hidden agenda that we have to be careful of.
Mr White: On a point of information: I think Mr Beer was the previous minister.
Mr Di Salle: Before Mr Beer, sorry.
Mr Malkowski: Does your union provide information to parents or consumers about their rights and the choices that are available to them to live in the community?
Mr Di Salle: We have been asking repeatedly that our members be involved in the consulting phase with parents in the initial meetings about placements. We would hope that this would become a regular process, that our people can be involved.
The Vice-Chair: Okay. We have come to the end of the time. Thank you for your presentation. We should stop our clock at this point. But before members of the committee leave, we have a couple of items to attend to. First of all, let me thank all of the committee members for their co-operation in getting through this marathon session today. I appreciate your co-operation.
The first item to deal with is instructions to our research officer, Alison, for tomorrow, the subcommittee meeting at 1 pm in room 1545 in the Whitney Block. Can we turn to Charles Beer for that?
Mr Beer: Subject to what others think, it might be most helpful if Alison could do a summary of the recommendations that were contained in the reports, as she did before. It may well be that she wants to do some of the introductory work just to make use of time, but I would think probably what we would want to focus on would be our recommendations.
I think we are going to try before that meeting to have some sense of some of the things that we would like to do, and I assume others would do the same. If Alison was able to do that, I think that would be particularly helpful.
Ms Drummond: Okay, what I thought I would do is try to distribute a quick summary of the recommendations, only the ones that have been made by witnesses, and try to get that to the subcommittee tomorrow morning. Does that seem reasonable? Then you could decide and you could distribute it.
The Vice-Chair: We could get it to their offices before the meeting.
Ms Drummond: At some point late in the morning so that you can look at it before the meeting, so that is a piece of paper that we are all working from. Does that seem reasonable?
The Vice-Chair: Is that agreeable?
Mr Jackson: Can we get the recommendations categorized? It would be a help.
The Vice-Chair: It would be similar to what you presented in the last segment.
Ms Drummond: Certainly they will all be identified by who made them. I can organize them into topics as well, if that is helpful.
Mr Jackson: Yes, it is helpful. I will respect your natural groupings. I just find that in that form it is far easier to read and develop a consensus.
The Vice-Chair: Is that agreeable to everyone? All right.
The second item is that we will have the full committee meeting on Thursday at 2 pm to finalize the report. We have approximately three hours left, give or take. The clerk reminds me we have two hours and 58 minutes exactly. There you have it. Is that acceptable to everyone? Whether it is or is not, we have already scheduled Thursday's meeting, so we cannot change it.
Mr Jackson: I have one issue I wish to raise and I will just flag the committee on it now. It may have escaped our first week's activity. That is with respect to the issue of publishing a report, the number of copies and the languages used. I will raise it tomorrow in subcommittee. There are two subcommittees now operating simultaneously.
Clerk of the Committee: The subcommittee report that was deemed to be adopted covered the languages for the report, which were both official languages. It also covered the tabling of the report if the report was not available in both languages when the House came back. The reports were being tabled then and it would be in one language --
Mr Jackson: We can discuss this tomorrow, because we are going to have some blockages here, no doubt.
The committee adjourned at 1721.